tag:blogger.com,1999:blog-65371708177999882982024-03-05T21:25:46.381-08:00Mrs. Rogers' NeighborhoodCindi Rogers is the Author of "Becoming Mrs. Rogers: Learning to Live the Fragile X Way".
She blogs about her life with two sons diagnosed with fragile X syndrome. Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.comBlogger67125tag:blogger.com,1999:blog-6537170817799988298.post-54629186480669733342022-07-13T09:44:00.004-07:002022-07-13T09:53:11.799-07:00Creating Jake and Joe Community<p> </p><p></p><p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">The
internet is filled with helpful facts about Fragile X Syndrome, and they are
all appearing in concert with Fragile X Awareness Month. You can find
everything from transitioning your child to school, therapy methods, toileting
training strategies and all of the genetic information you so desire.<span style="mso-spacerun: yes;"> </span>But, you know what’s not listed anywhere?</span></p>
<p class="MsoNormal"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">How
to die peacefully as a parent of special needs child.</span></i></b></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">Chris
and I have worked tirelessly for 31 years since diagnosis to learn and
implement what works best for our two guys. We’ve adapted every aspect of our
life in hopes of giving them a world that takes all of their needs into
consideration. Truth be told, time ticks away but our guys are stuck in a time
warp. As they live a high quality of life in the bodies of men, strongly
affected by a genetically passed cognitive disability, their routine is
incredibly stable and smooth. In contrast, we are aging closer and closer to
our assembled reality.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">Eight
years ago, I wrote <a href="https://www.amazon.com/Becoming-Mrs-Rogers-Learning-Fragile-ebook/dp/B00NLY0V2E/ref=sr_1_1?crid=3HIKQV57SFGZ9&keywords=cindi+rogers+becoming&qid=1657730263&sprefix=cindi+rogers+becoming%2Caps%2C202&sr=8-1" target="_blank"><b>my memoir</b></a> that outlined our plans for our sons’ future as it
was known back in 2014, but the specifics were a bit murky.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">As
I reread one of the last chapters in my book, the words resonate even more
than when I originally wrote them. (page 278)</span></p>
<p class="MsoNormal" style="margin-bottom: 0in; margin-left: .5in; margin-right: 67.5pt; margin-top: 0in; margin: 0in 67.5pt 0in 0.5in; tab-stops: .75in 5.5in;"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">“….The point is
that we can see a future. We can envision success. We can even visualize the
actual steps now…..<o:p></o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0in; margin-left: .5in; margin-right: 67.5pt; margin-top: 0in; margin: 0in 67.5pt 0in 0.5in; tab-stops: .75in 5.5in;"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;"><o:p> </o:p></span></p>
<p class="MsoNormal" style="margin-bottom: 0in; margin-left: .5in; margin-right: 67.5pt; margin-top: 0in; margin: 0in 67.5pt 0in 0.5in; tab-stops: .75in 5.5in;"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">When I think
about the actual implementation of “the plan” though, it scares the crap out of
me. The reality is daunting. Can it be done? Who will help? Will there ever be
anyone who will love Jake and Joe as much as us? Will they be well taken care
of? What if there is a difficult behavior issue that arises? Will anyone know
how to manage this or what tools to use? These are scary questions—scary
because we don’t know all of the answers.”</span><span style="font-family: "Times New Roman", "serif"; font-size: 14pt;"> </span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">With
the passage of time, we’ve been able to fill in a few blank spots, at least the
physical steps. </span></p><p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">In January of this year, we had the opportunity to purchase the
home across the street from our current house. Even though it wasn’t an easy
decision, it seemed in complete alignment with our life-long plan for “Jake and
Joe community”. So, we’ve spent the past 5 months renovating the house in hopes
of allowing 2 caregivers to live there. We have always envisioned having 2
caregivers live in our house when we retire, but this additional home will
allow a full team to occupy space in a very close proximity to meet, hopefully,
every possible need.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">We
anticipate that there will be two people to oversee the daytime routine across
the street, and two others to manage the nighttime care here in our house. It
is our hope that this will also allow for backup in every situation. During the
past several months, I have been able to see clearly that there are many
possibilities for Jake and Joe community. The reality is that we will not know
every hurdle until we can put the actual plan in place.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">Even
after every foreseeable detail has been addressed, and every person involved is
in place…we still cannot know every scenario. We cannot anticipate every
possible minute, hour, or day. Without these answers, how can we find that necessary peace that Chris
and I so desperately need?</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">With
a majority of the physical pieces in place, now comes the really hard work….the
mental preparation for all four of us. This is the monumental task.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">Who
will know when Joe needs a hug, or when to back away because he might bite you
instead? I do. How do I teach that? There are a million details, but it’s the
little things that I stumble over. Like, when we tuck the guys in at night (yes,
we still do this). Likely a caregiver will not do this. I know we need to begin
to back away, but my heart won’t allow me to right now.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">It’s
the little things….each and every detail needs to be addressed. On the other
hand, who in their right mind would want this life? Will there ever be someone
who wants to give up years of their life to take this on?</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">We
spend our days trying to live our best life without exuding worry or fear even
though it occupies the back depths of our mind. We are filling Jake and Joe’s
years with memories and experiences that will hopefully stay with them long
after we are gone. But, the facts still float around in our heads. Chris and I
know that likely one of us will be left to finish it alone. There aren’t many
couple that pass away together. In the meantime, we are working together as
long as we can to see our plans through without that guarantee of time.</span></p>
<p align="center" class="MsoNormal" style="text-align: center;"><b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">We are banking on the hope that we will
live long enough to see every detail through, but no one is guaranteed
tomorrow. We are awash with fear every day even though we exude hope through
our actions.</span></i></b><span style="font-family: "Times New Roman", "serif"; font-size: 14pt; text-align: left;"> </span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">What
we are left with is faith; faith in our ability; faith in our friends, family
and caregivers to finish what we started. There is no guidebook for this
chapter. We have to wander aimlessly in the dark, feeling our way each step.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">The
darkness is so terrifying, I imagine it is comparable to the sheer panic one
might feel just before jumping from a bridge while tethered to a bungee cord.
You know you’ll be ok, but there is still that 1% of contagious doubt that
courses through your body just before you plummet. In theory, we have 5 years
before we retire. Then, shit gets real. We can’t wait to be ready. We have to
keep plugging on. The eminent clock is ticking.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">There
may not be a point of absolute peace. Now, I wonder if everything will ever be
done to the point where we can say, “Ok, we are ready”. At present, we have no
idea how we will fill this new home with kind, capable people that will care
for the most precious gift of our lifetime. We already know that no one will
love them the way we do. But, how do we begin to take the tiny steps necessary
to pass the baton on to the next custodian? On paper, I estimate the transition
process to take 2 full years once we begin.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">I
pray that we have that many years to see our plan come to full fruition—to see
our sons happy and enjoying their life without us. I know the truth in my head.
I know that I have wasted mountains of energy in the past worrying about things
that always work out. I know that Chris and I are capable to doing this. <span style="mso-spacerun: yes;"> </span>The life of a special needs parent is never
done. It sucks. But, we will do it. Our purpose is defined. Step by tiny step.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">We
count down the moments we have left, even at our “young” age….because we must.
We try to focus on enjoying every moment, doing things we all like to do
together, not knowing what the future will grant us.</span></p>
<p class="MsoNormal"><span style="font-family: "Times New Roman","serif"; font-size: 14pt;">Now,
this is some real Fragile X Awareness.<o:p></o:p></span></p><i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i><p></p>Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com14tag:blogger.com,1999:blog-6537170817799988298.post-74346067105463923932021-12-25T08:58:00.002-08:002021-12-25T08:58:54.460-08:00Christmas Blessings and Angels<p>2021 marks almost two full years of this frickin pandemic. Coincidentally, December 19, 2021 also marks our 21st airline flight with our guys! This is quite monumental for 2 guys with Fragile X that never flew before 2016!</p><p>As we celebrate Christmas in Cancun, I find myself reflecting on the two years we've faced, like everyone in the world, and my emotions flow first toward sadness.</p><p>I'm sad that we've known 5 young men who lost their will to live during this dark time, including our Nephew. </p><p>I'm sad that the small-but-full world our boys live in day-to-day grew even smaller. For some with disabilities, it's been zero quality of life in this world.</p><p>I'm sad that I am not able to physically hug so many people that are important to me.</p><p>I can't wallow in that mind-set, obviously, so I choose to focus on the thousands of blessings I have to be thankful for, especially the people....the Angels. The Angels who are always there to help us, even in minute ways.</p><p>There's the Secretary at the church where Jake works, Miss Tammy, who often takes time to give him a full-page "print" of Mister Rogers, which he proudly and gently carries home.</p><p>There's the waitress at Chili's that is truly a part of our family now, Miss Jen. She finds time to text me every Wednesday to make sure we are coming for a visit so she can have our usual table, drinks at the ready, all prepped and saved.</p><p>There's one of Jake's favorite people and hair stylist, Lisa, who adoringly chats in "Jake-speak" every time he gets his haircut (4 weeks on the dot), and ends his visit with a hoodie hug. </p><p>Or, Joe's barber, Eddie, who makes him feel like Norm from "Cheers" every month, yelling along with all the guys in the shop, "Joe!!" Then, knuckle bumps all around.</p><p>There are numerous friends and neighbors that we have clung to during this time in an effort to assume some semblance of a new normal. We've shared numerous meals and delightful company together.</p><p>Our dear friends Tim and Kathi are always a soft place to land no matter what the situation, making travel especially adventurous.</p><p>Of course, we have the biggest daily blessing of all in our Daniel and Amanda who keep a watch over the guys like their own siblings. There is no possible way to equate their commitment in words.</p><p>The folks at the Ace where Joe has worked for going on 13 years, are amazingly dedicated to making him feel useful and loved.</p><p>If you've been kind enough to follow our whacky, quirky stories for any amount of time, you know we celebrate Christmas in a most unconventional way. We never wait until December 25th to open presents. The anxiety and lack of sleep for our guys would be insurmountable. Thankfully, I have the luxury of adjusting our visual calendar any way I like (devious Mom that I am). </p><p>This year I kindly asked Santa to grant me a favor....I asked him to come while we were at dinner on Friday, December 17th, and amazingly he did!!</p><p>Now, understand, thinking up new gift ideas for Jake (32), and Joe (30) is NOT easy. But, in other ways it's a breeze. After years of sleuthing and mystery solving, we figured out that what they really want in the mix are some consistent items like new sweat pants and DVDs. So, we buy those and then try to come up with one or two surprise items. This is where it gets complicated, but sometimes we hit the mark.</p><p>Five years ago we bought Joe a replica of an old pay phone for his room. If you want to see a vision of joy, come over any morning and take part in a call to 1 of 4 of his favorite restaurants! I printed out a "speed dial" menu, for example, 1 for Chili's, 2 for Red Robin, etc. He picks up the receiver, dials 2, then yells my name to come and participate by giving the verbal food order. I usually do one round and then remind him that we are "all done", then redirect (again, mean Mommy).</p><p>Many years ago, we secretly pocketed a Chili's menu and brought it home. After daily perusing by Joe, I finally had to laminate it to save it. We still have it many years later, and it's still a part of our daily routine. Joe grabs it from it's special spot on my desk at least 10 times a day, waving it in my face with a pleading look. So, I had a brilliant idea... surprise him with a menu from his beloved Red Robin! </p><p>I could go to the restaurant and ask nicely....but I had an Angel. Jake and Joe's friend, Katherine has worked at our local Red Robin for years, so I asked if she (with the help of her Momma, Pam) could get us one? A Christmas wish was granted. </p><p>Joe tore through his familiar fare then pulled out the menu from the gift bag. I wish I had been better prepared to capture the moment, but..... you know the story. So, here we are, 2 hours later, still holding tight on that menu...that free menu.....that ultimate gift menu. All granted by way of an Angel. </p><p>Each year, as parents, we learn the incredible value of the things money can't buy, and we are constantly reminded that Angels are all around us.</p><p><br /></p><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEiRhc_ccnMCXV0sSd34WbN7i8uknByOX6e1P-rSQ4al9CrJLasXs_tfuqamSDwkGBia1_n3OVmPAP7hHzg0jhpHD296zxv3z3GPS_Y0bc61fnqQ5-pSaIUhlKi1O6nkpP97R24ox03i2xo828Gf5JAiK-87iZtN94LnfRldt4QyBV-Eg8bOrH8BDPa6=s4000" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="4000" data-original-width="3000" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEiRhc_ccnMCXV0sSd34WbN7i8uknByOX6e1P-rSQ4al9CrJLasXs_tfuqamSDwkGBia1_n3OVmPAP7hHzg0jhpHD296zxv3z3GPS_Y0bc61fnqQ5-pSaIUhlKi1O6nkpP97R24ox03i2xo828Gf5JAiK-87iZtN94LnfRldt4QyBV-Eg8bOrH8BDPa6=s320" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Joe all goo-goo-eyed with his menu<br /></td></tr></tbody></table><div class="separator" style="clear: both; text-align: center;"><br /></div><div class="separator" style="clear: both; text-align: center;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEjuy_swtBKEirrSCeTznhRH92-qL-F31n-wkoHePpn7-EmXe6kwPIQHMnR1er1_2L6j4bHppHAVw2nTO91Bq2VeaGFK7G__04h6JV8wBuh4RuPXvbOrAgoiJOpgMniDVstHLjatvE3KoYutj7GhYDOke0mbF-3UFezhuonS71vik6Qzc_Uzul_29m_c=s960" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="720" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEjuy_swtBKEirrSCeTznhRH92-qL-F31n-wkoHePpn7-EmXe6kwPIQHMnR1er1_2L6j4bHppHAVw2nTO91Bq2VeaGFK7G__04h6JV8wBuh4RuPXvbOrAgoiJOpgMniDVstHLjatvE3KoYutj7GhYDOke0mbF-3UFezhuonS71vik6Qzc_Uzul_29m_c=s320" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Attempt #1 of the ultimate family photo</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEh045WpIppuQLmxw4bltzv7pX1sMSBZgb5VjCSBYowN1yYs6gEFl013Hi69puS7hcl_PlEQ2fvjvaD7KBaOHB0El9BX6mbiHNT4KbhMO1XkeiabaVBc6VoPuzmhb5ykVf-5PVqkOKUw6AS4NSOw81k7NUB-6uDNMTuhb93Jnv2HLYFJR87Rp_OIl37L=s1600" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://blogger.googleusercontent.com/img/a/AVvXsEh045WpIppuQLmxw4bltzv7pX1sMSBZgb5VjCSBYowN1yYs6gEFl013Hi69puS7hcl_PlEQ2fvjvaD7KBaOHB0El9BX6mbiHNT4KbhMO1XkeiabaVBc6VoPuzmhb5ykVf-5PVqkOKUw6AS4NSOw81k7NUB-6uDNMTuhb93Jnv2HLYFJR87Rp_OIl37L=s320" width="240" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Attempt #2 of the ultimate family photo</td></tr></tbody></table><br /><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/a/AVvXsEgUd6b9at8sxzPgj55cB_Xb2k9f5NdC9q8uELa_7hV4BE7fKpILmsSVrK9TnLX77WqTl1Jtdgg3xpMDY_ucI57OEfoNi7R6TgYmA2DAcv3vwwcfdQOu5JZHrKFh-E3I6G5aY13Q5ApIi61pOJ6JMCKdnfoKSpbF632K-Wd-hJkMTkwFqyzj2s95_otS=s1083" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="703" data-original-width="1083" height="208" src="https://blogger.googleusercontent.com/img/a/AVvXsEgUd6b9at8sxzPgj55cB_Xb2k9f5NdC9q8uELa_7hV4BE7fKpILmsSVrK9TnLX77WqTl1Jtdgg3xpMDY_ucI57OEfoNi7R6TgYmA2DAcv3vwwcfdQOu5JZHrKFh-E3I6G5aY13Q5ApIi61pOJ6JMCKdnfoKSpbF632K-Wd-hJkMTkwFqyzj2s95_otS=s320" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Finally 🤣</td></tr></tbody></table>Merry Christmas to all!!<br /><div><br /></div><div><br /></div>Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-38142919368681021672020-03-24T14:58:00.000-07:002020-03-24T17:10:06.006-07:00Friends Are So Important<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw_2UzP6FWczux7SALKxHHRCG63iAwLZ83OP2MGxCyjObcsBNu4B7WarkjYb4kAaU2j3s-X26zF4plN2J1SiD5jtCwkdD-b0SbQUptX3BKGP6k8EFjqt8Os5bZ3rqNIfWURcu6KEwY8_Y/s1600/FB_IMG_1585094911114.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="412" data-original-width="485" height="271" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhw_2UzP6FWczux7SALKxHHRCG63iAwLZ83OP2MGxCyjObcsBNu4B7WarkjYb4kAaU2j3s-X26zF4plN2J1SiD5jtCwkdD-b0SbQUptX3BKGP6k8EFjqt8Os5bZ3rqNIfWURcu6KEwY8_Y/s320/FB_IMG_1585094911114.jpg" width="320" /></a></div>
<br />
<br />
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Dear
Friend,<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Thank
you for checking on us as the world faces unfathomable challenges. We are
actually doing quite well, thank you.
Never in my life have I felt <b><i>less</i></b> alone than I do right now! This pandemic
has certainly leveled the playing field by which we all play! Every human
being on the planet earth is facing many of the same obstacles, which makes it
difficult to complain, therefore, I won’t.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Also,
never in my life have I felt more prepared to get a 90% score on a test in my
life! It’s kind of like I know what to do for 90% of the time, and the other
10% will be learning and growing.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">You
know Jake and Joe, so you know that hubby and I have worked our butts
off for the majority of our life to make theirs one of quality and
happiness. These past 10 days have been
no different. As is true for almost
everyone in the U.S., we are now approaching day 10 of no stimulation outside
of our own homes. We’ve made it work,
but it certainly hasn’t been without our share of tests.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">You
may remember, we started over 12 years ago building a work/life routine for the
boys. We made sure to include areas of the community so that they could have a
full range of choices. Well, without their work, movies, the mall, the library
and the rec center, this makes a small-but-full world even emptier. So, we’ve resorted to using the small range
of choices we have and offering those more often. They’ve always loved eating out, but now we’ve
made the highlight of a few nights a week to be getting a “bag” from a
restaurant and bringing it home. This seems to be working as a highlight, so we
will continue to do that.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
made our usual monthly calendar, but I’ve already had to change it three times in the
month of March—highly unusual. It’s so tough to plan ahead right now, even for
me, so providing guidance to them is nearly impossible. One of Jake’s favorite
activities is the one day a month where he gets his haircut. He adores his Stylist, Miss Lisa and looks so
forward to seeing her, getting his “cut” and “poo” and paying her for the
service. Well, that one went by the
wayside, twice, so I removed it from the calendar. This situation fell within
that crazy 10% of learn-as-we-go. He managed to work himself up into tears after
asking us 1,000 times for “cut”. We no longer knew when it would happen definitively,
so I resorted to cutting it myself, which seemed to settle him down. Needless
to say, I am NOT a hairstylist, but I didn’t screw it up too much.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It’s
very comforting to know that all the work we put into helping the guys trust
and understand their routines has paid off. They trust us implicitly. We still
see it as a blessing even though right now it’s tough to project anything.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We’ve
reestablished some of our old routines that I used to use during summer break
from school. Back then, when I didn’t know how to fill their time, I got really
creative with outdoor activities, but it’s winter here in Colorado, which poses
its own challenges. Luckily, we’ve had highs in the upper 60’s 3-4 days a week,
which allows us to grill outside and enjoy some time outdoors. I resorted to
putting the beach chairs on the patio just so we can sit outside several hours
a day and get some fresh air in between the snow showers. I added it to the
visual schedule hoping that the boys are more accepting of these transitions
from the “normal”. They’ve done a fantastic job. I’ve tried to add one
additional new item to the visual schedule each day over the past week to
expand their horizons gradually. Chores are still a part of everyday life with no exception. I know eventually we are going to run out of
new choices, but for now we are moving forward.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The boys usually earn $1 a day in their normal routine, so we've continued to do that. We thought about raising it to $2 a day, but Lord knows we don't want to start something we can't continue long-term...hahahahahaha. I'm so thankful that I have always kept a "stash" of prizes that we can draw from when needed. You never know when you might need a new Mister Rogers DVD or a Doodlebops DVD to appease the shopping urge.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif;"><span style="font-size: 14pt;">I
feel like we’ve really been preparing for a situation like this for many years.
I have another friend, you know her, that always asks me if I ever live in the
now or am I always projecting forward? You know the answer….always projecting
forward. I am thankful for that now! I had ordered Joe’s beloved peanut butter
cracks in bulk several months ago, thank goodness, now we won’t run out. He's such a picky </span><span style="font-size: 18.6667px;">bugger</span><span style="font-size: 14pt;">. I’m
also glad that we have the RV if we need to “get away” LOL. Chris thinks it’s
his personal “man-cave”! Thank goodness for Rocket!<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
always, Chris and I are practicing coping and calming ourselves so that we can
try to project that on the boys. It doesn’t always work, but it seems to be manageable
right now. Even though we both have lost a bit of sleep over worry, we are trying hard not to project that worry on the boys. We decided to minimize the tv news, allow each other a break each day, and take turns doing massage on
each other as a method of relaxation and deep pressure. You know that giving
the guys deep pressure has always been such a calming method for them, so now
it’s just part of that routine. We also put together two different music
playlists that we can listen to—one for dancing (good gross motor) before
dinner each night, then one for quiet time. We all love this small but powerfully effective element in our day.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">All
in all, we are not putting too many new demands on the guys in order to keep
the peace. I’m so happy that we are beyond the school years so that we don’t
have to try and be Teachers too. We are
not that talented. We’ll just try to continue to meet the physical and
emotional needs of all 4 of us while using those resources in our immediate
proximity. It’s all going to be ok. As with everyone, the most frustrating part
is not knowing when it will end. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I am so happy to write to and chat with friends.
The guys miss their friends so much—we all do. Please keep us posted on how you're doing and let us know if you need anything. We
wish you all the best with you and your family. We cannot wait until a day when
we can hug you all. By the way, we are totally NOT practicing social distancing at home. It cannot be done in Joe's world. 😜😜😜</span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i></span>Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com1tag:blogger.com,1999:blog-6537170817799988298.post-30606093656808101042019-07-09T12:04:00.000-07:002019-07-09T12:21:27.371-07:00My Life-A Race to the Finish Line<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjflVjy_HQsooO16_qKi1kplQTorsmpkWHPxQZmnKovSAUVC8c0brphaDqmDNp8heNxgv7Iks0SgLWjhW3rucBaVx6uTzwoKbBSpwtsJX3GxILay-8PtYO3TUhcbbKz3iJudWepnmwNN2c/s1600/IMG_20190221_074811_482.jpg.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1267" data-original-width="1354" height="299" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjflVjy_HQsooO16_qKi1kplQTorsmpkWHPxQZmnKovSAUVC8c0brphaDqmDNp8heNxgv7Iks0SgLWjhW3rucBaVx6uTzwoKbBSpwtsJX3GxILay-8PtYO3TUhcbbKz3iJudWepnmwNN2c/s320/IMG_20190221_074811_482.jpg.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our family enjoying the beach in FL, October 2018</td></tr>
</tbody></table>
<span style="font-family: "times new roman" , serif; font-size: 14pt;">When
Jake and Joe were first diagnosed at the ages of 2 and months-old, I rarely
thought about what my or my husband’s death would mean to their lives. I was
too engrossed in the day-to-day. My thoughts were consumed with which therapy
appointment I had to tote them to, or trying to interpret their every need when
they couldn’t tell me.</span><br />
<br />
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As the boys passed toddler-hood and moved into preadolescence, my time was still depleted by their every need while contemplating
which IEP goal I needed to focus on, how to stop shirt chewing, or the ever-elusive
hand biting or groin scratching. I couldn’t face even the thought of looking
too far into the future. There was too much uncertainty.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
wasn’t able to even conceive what Jake would be doing when he was 16 years old,
or how Joe would learn to cope with all that consumed his little body when he
was 10. The future was too scary to foresee, especially on those bad days when
everything Fragile X Syndrome looked me straight in the face. Yes, there were
even days when I hated that I had to think about all this when my friends were
doing something totally different. Jealousy abounded.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">My thoughts were
only a dark place where images of the worst scenario lived. I couldn’t see the
hope that existed within their ability or the people that endlessly supported
us. Then, a</span><span style="font-family: "times new roman", serif; font-size: 18.6667px;">s with all things, my thoughts evolved. The boys grew and learned and flourished far beyond what I could have conceived in my own thoughts.</span><span style="font-family: "times new roman", serif; font-size: 18.6667px;"> </span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Fifteen
years ago, I did something that dramatically shifted my thoughts.<span style="mso-spacerun: yes;"> </span>I attended a workshop put on by the ARC of
Colorado that included planning for their future, a session on Wills &
Trusts, Legal Guardianship, an explanation of the different waivers available
through our county agency, one on Social Security and a brief touch on
employment.<span style="mso-spacerun: yes;"> </span>I was apprehensive at first
to learn about all of this intimidating stuff, but, it changed our life!<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
I sat waiting for the first speaker to begin, I gazed around the room at the
other attendees. There were Mothers, Fathers, Grandparents and Guardians. The
speaker began to introduce the days’ agenda and asked us each to give a short
introduction. After each person had given their short spiel, it was clear to me
that I had the youngest kiddos in the room….a testament to the fact that I have
no interest in waiting until the last minute for anything in my life. I don’t
like the stress that comes with waiting until the moment is upon me, nor do I
like not having all of the information available to make a decision and plenty
of time to analyze it. It was evident that this workshop would provide me with
tons of information to jump-start my thinking in a new direction. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
raced home with all of my notes, eager to share all I had learned with my
husband, Chris. For months after the workshop, I was still energized enough to
tackle some of the issues they had talked about. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Over
the next several years, Chris and I took the leap and created a will and
special needs trust with the help of a lawyer that guided us to make decisions.
One statement during our consult with him still resonates with me today. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">He
said, “Make decisions on guardians and trustees based on today, not what you
think the future will hold. You can always revise the documents later.” This
gave me peace and the ability to sleep at night. It felt liberating to be able
to check that one HUGE task off of our to-do list without going into
speculation about who would be around in the future. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
had a pile of information on Legal Guardianship that we put to good use when
Jake turned 18, and later, Joe turned 18. We breathed a sigh of relief as we
crossed off that daunting task. I subsequently took another course on how to
file the Annual Guardianship Report by myself in order to save a few pennies
(about $1500 a year to be exact). <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">When
the guys were eligible, we filed for and received SSI and Medicaid. This is a privilege
that I still struggle with. I was raised by folks who never took a handout so
it stings a bit to accept help. Knowing that it will assure services for the
boys long after we are able to (or if we are unable to) is the one thing that
gives me reassurance that we did the right thing. I feel like it never hurts to
question convention. Just because others do something does not mean we have to
do it…but, in this case we feel it has helped our sons more than it has hurt
our mental struggle. We strive each day to fulfill <u>our</u> part of the
responsibility for our sons, too. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">During
our sons’ journeys through middle school and high school, we heard many options
for employment, or ideas on how to obtain employment. This was the hardest
thing by far to envision. We were told, “Think about your sons interests and
focus on those.” I wondered how we could capitalize on an extremely high
interest in Sesame Street or Mister Rogers Neighborhood as a job opportunity.
Well, suffice it to say that we worked methodically and exhaustively on securing
motivating and interesting jobs for both of our sons. I detail all of these
challenges in my book, <b>“Becoming Mrs. Rogers” (Click <a href="https://www.amazon.com/Becoming-Mrs-Rogers-Cindi/dp/1497373409/ref=sr_1_1?keywords=Becoming+Mrs+Rogers&qid=1562698856&s=gateway&sr=8-1">Here</a> to order)</b> if you wish to read more about
that.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
compilation of everything I learned during that workshop caused us to write
down a conceptual 2-year transition plan on how we hoped to retire without our
sons and leave them in the care of others in our own home. Mind you, it’s been
only on paper without super-fine details attached up to this point. There were
some holes in the plan that we just could not fill 10 years ago when we wrote
it. But, it would include the fact that we’ve left our home in trust for our
sons so that they can viably stay in their own home with constant supervision.
As with all things in their life, it requires a VERY gradual, methodical change
in order to be successful. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">This
entire transition plan, we knew, would cost money.<span style="mso-spacerun: yes;"> </span>We had no exact idea how we would fund the
caregivers or the upkeep of the house. So, some years ago, we established some
ways of saving money in the trust. I also continue to tap away at a 3-ring
binder that will record facts about the upkeep and maintenance of the house.
This gives us an idea on how much it will cost…. but nothing is perfect when
you are projecting into the future. It’s a start, and perhaps a middle.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">This
month, a big thing happened. Jake qualified for a different waiver that will
help fund his caregiver for the rest of his life, despite us believing that he
would never clear the wait list we faced when he signed up at the age of 15. This
came long before we ever thought it would. It was the best and the scariest
news yet. We are thrilled that the question, “How will we fund the caregiver?”
has been answered, but it puts things in motion that we were not ready to think
about in our mid-50’s.<span style="mso-spacerun: yes;"> </span>We will be ready.
We are prepared to move forward, not backward.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It’s
been fifteen years since that workshop, and we’ve arrived at a really good
place in our lives. Our worst nightmare never came to fruition despite the
worry. I only wish I could have that time back to spend in a more productive
way.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Chris
and I have spent a great deal of time over the last year talking and
implementing many things that we need to tick off of our list in order to know
that our due diligence is done. It’s been difficult to say the least. Morbid
for some to even to read about, I know.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
are working with our lawyer to complete the third revision of our Trust as I
write this. It’s all evolved in a very natural way and has come to a better
ending than we ever imagined. We feel at peace with the decisions we’ve made so
far.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Over
the past year, we’ve taken time to talk about and resolve issues surrounding
our own quality of life and the life after that. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">-We
were able to purchase long term care insurance so that when no one is able to
care for US, there will be a plan. It was a nagging, unresolved issue that has
since been dealt with. One less worry.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">-We
are in the process of pre-paying for our own funerals so that no one will have
to think about or decide what to do. Check it off!<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Another
thing we have come to realize is that our sons enjoy many of the things we do,
including spending some time at the beach during the cold, long winter months.
So, we are exploring the idea of getting a small place in a warm climate where
we can begin to practice another transition that will, hopefully, carry on
after we are gone. It’s a work in progress. The ability to envision a positive
future has allowed these thoughts to flow through and be a bright spot as we
get older.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Our
sons have some of the best quality of life of any people we know. They love
their home, their jobs, their friends and all of the opportunities that come
their way. Behaviors are still with us, but in a minimal way. No one in our
family is perfect, so we do our best. Yes, we still have some learning to do
before Chris and I exit this earth, but we have faith that it will all happen
in due time.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">So,
for now and the rest of time, we are vowing not to spend every waking moment
thinking about Fragile X Syndrome or what will happen when we are gone, but
making memories to last a lifetime.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span>
<br />
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt;"><i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i></span></div>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"></span><br />
<br /></div>
<br />Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com2tag:blogger.com,1999:blog-6537170817799988298.post-85575492566375277642019-05-09T11:28:00.000-07:002019-05-10T08:54:38.761-07:00I WILL ALWAYS BE THEIR MOM<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3eMel0gtVUtH8-zV3Ze3voPGi16U20LrcGICxPZtWcTpWabBMg-vBLCYx8oX1-7b1hrxDUFZb2Rdd5_azNeIeUyZ08RXdQUlHHgRnDWvedJImV77B_HWW9nhEKHlV6kWpJkTa8Jx9Who/s1600/604170_4864372849491_166031637_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="490" data-original-width="490" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3eMel0gtVUtH8-zV3Ze3voPGi16U20LrcGICxPZtWcTpWabBMg-vBLCYx8oX1-7b1hrxDUFZb2Rdd5_azNeIeUyZ08RXdQUlHHgRnDWvedJImV77B_HWW9nhEKHlV6kWpJkTa8Jx9Who/s320/604170_4864372849491_166031637_n.jpg" width="320" /></a></div>
<br />
<br />
<br />
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">First
I was a girl<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Then
I met him and I became a wife<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
held our firstborn in my arms, and I became a Mom<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
became a family<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
worried about a sniffle, a cough or a tumble<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">He
grew, but at a rate that didn’t seem quite right<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">A
Mother’s instincts are stronger than facts<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
longed for more love<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">So
we had another son<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As I held him in my arms</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Many questions surfaced</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
day I heard “diagnosis” was a new chapter of sadness<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">My
worries grew and grew<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
felt unrelenting guilt as I gazed into his blue eyes<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
gene came from me<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
prayed to God for some kind of resolution<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">If
only I could do more<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
knew if I did more that it would cause a cure<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">No
cure came<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">But
the behaviors and challenges did<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
saw my sons as a representation of Fragile X<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Long
face, prominent ears, speech delays, motor delays<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It
defined my every waking moment<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
didn’t know how to love this<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
had to redefine my expectations<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
quickly learned to always have the green Gecko shirt clean<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Then
I learned to buy 5 of everything<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Then
I taught him to do his own laundry<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Waiting
was especially hard<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">So
I hurried at everything<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Then
I taught him how to wait<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">This
took a very long time<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
was consumed by all things Fragile X<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">School
meetings, therapies, strategies, approaches<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Each
day was a learning experience<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">How
to dress, how to learn, how to care for their every need<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Then
I saw that they could learn some things<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">And
do some on their own<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
the years passed, we continued to learn together<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
focused on tasks and jobs and life skills<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They rose to unexpected heights</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
taught me patience and perseverance<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I am still learning those<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Together
we learned how to live together<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
learned how to cope with my own expectations<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
learned how to tolerate me<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Then,
finally, we learned how to <i style="mso-bidi-font-style: normal;">live<o:p></o:p></i></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It
took me a long, long time<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
had to give up the traditional definition of Mom<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
had to learn how to spread our wings<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">And
fly together<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">In an unconventional path</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Now,
I almost never think about Fragile X Syndrome<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
like to think about quality of life<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Sometimes
it’s a quality of life without me<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Without
Mom<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I’ve
learned that it’s ok to think<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">About
their life without me<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Life
without Dad<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Life
without family<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It
allows a new realm of thoughts to emerge<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">New
thoughts about reality<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">New difficult questions</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Who
will care for me and Dad<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">What
about our own retirement<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">These
question bring about worry<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">But it's also forced us to act</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Action has brought about peace and contentment<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
are able to breathe deeply<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
are able to feel encouraged<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
found out it can be ok<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
are making plans<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Transition
plans<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Quality
of life plans<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Difficult
plans<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
best things can happen when<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
allow myself to think ahead in a positive way<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">To take action instead of worrying</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
good people come through<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
emerge when I least expect it<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">This has taught me to have faith</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Nothing
has ever or will ever be perfect<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">That’s
part of my own learning<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">But
they are perfect<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">And
I am their Mom<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I’m
glad I’m their Mom<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Even
through all of the really hard parts<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I’m
grateful for all of the learning<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Mostly
for learning to cope<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I’m
forever a Mom<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">To
two amazing sons<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
learning will never be done<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
will make mistakes<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">But they love me anyway</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 14pt;">Thankfully</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">At
28 and 30<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
still hug me daily<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
still call me “Mom”<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">My love could not be any deeper</span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><span style="font-family: "times new roman" , serif;">I will always be their Mom</span></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBaGkYHQilvcFpMCoK6hrpURLITBt3TlvMFK1OyXpfBypbsGV6ti9QOVNiVsuZXxcxdTUU4vf5yYjese6iEltUrCbD7HRG1giA9wYzYg-HjzeXSFIoZxlpYD2OsseaR-7EvS0vawe9-eA/s1600/1380311_10202229601643785_1311994263_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="412" data-original-width="485" height="271" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBaGkYHQilvcFpMCoK6hrpURLITBt3TlvMFK1OyXpfBypbsGV6ti9QOVNiVsuZXxcxdTUU4vf5yYjese6iEltUrCbD7HRG1giA9wYzYg-HjzeXSFIoZxlpYD2OsseaR-7EvS0vawe9-eA/s320/1380311_10202229601643785_1311994263_n.jpg" width="320" /></a></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i></span></div>
<br />Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-87654730076342601652019-02-19T10:02:00.000-08:002019-02-19T14:56:10.998-08:00Looking in The Rear-view Mirror<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiccvfAD5e9Y2Du9I9uRpdVWfCOfDQZnmH3dmQLDdvoNkwbBcHkc3qPLkVR0TXDpQVFnrBMfZo6nJBIN8ex6C5INIHU2gTtU0PbENTx80bb2tfCWgXkjTV16KwES6FjvWhitxHYU4s4Hu8/s1600/rearview2_edited.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiccvfAD5e9Y2Du9I9uRpdVWfCOfDQZnmH3dmQLDdvoNkwbBcHkc3qPLkVR0TXDpQVFnrBMfZo6nJBIN8ex6C5INIHU2gTtU0PbENTx80bb2tfCWgXkjTV16KwES6FjvWhitxHYU4s4Hu8/s320/rearview2_edited.jpg" width="320" /></a></div>
<br />
<br />
<br />
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It’s
taken me nearly a year to formulate the words to write
this blog. My oldest son, Jake, turns 30 -years-old this week. If the very words
weren’t enough to freak me out, then the facts could be. As I’ve come to this
harsh reality over the past many months, my emotions have been a virtual roller
coaster.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">First,
I began to feel a sense of panic over the fact that <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">my</i></b> son is 30!<span style="mso-spacerun: yes;"> </span>T-h-i-r-t-y!<span style="mso-spacerun: yes;">
</span>3-0!<span style="mso-spacerun: yes;"> </span>That makes
me….errr….well….not a spring chicken anymore! That also makes him not a young
man anymore.<span style="mso-spacerun: yes;"> </span>He’ll be 30! I don’t think
I even had this much trepidation over my own 30<sup>th</sup> birthday.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Once
the panic began to ebb, I felt a strong sense of urgency.<span style="mso-spacerun: yes;"> </span>An urgency to make sure that my husband and I have done all
we can to teach him what he needs to know to go forward without us—a fact that
seems to be creeping closer with each passing day. This urgency comes when
you have a son born with a cognitive developmental disability, and you are responsible
for teaching them <u>every single thing</u> they need to know to be set up for
their own success in life.<span style="mso-spacerun: yes;"> </span>I’m not talking
about business sense or some other professional nonsense.<span style="mso-spacerun: yes;"> </span>I’m talking about very basic skills to get
through each day with as much independence as possible, like dressing,
showering and eating—basic life skills.<span style="mso-spacerun: yes;">
</span>Gradually teaching Jake, and his brother, Joe, 28, who is also affected
by the same developmental disability, is something that my husband and I have
worked our butts off at for the past 20 plus years…in fact, I wrote a book
about many of our methods and strategies in an effort to help others get to
where we are-- <a href="https://www.amazon.com/Becoming-Mrs-Rogers-Learning-Fragile-ebook/dp/B00NLY0V2E/ref=sr_1_fkmrnull_1?keywords=cindi+rogers&qid=1550595191&s=gateway&sr=8-1-fkmrnull" target="_blank">Becoming Mrs. Rogers-Learning to Live the Fragile X Way</a>! But, we are not finished yet.<span style="mso-spacerun: yes;">
</span>They are not completely ready yet, and this frankly scares the shit out
of me.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">So,
I do what I have always done….I take some time…..like a year….and I analyze my
emotions and try to make sense of them in a way that helps me get a handle on them.<span style="mso-spacerun: yes;"> </span>I have to find ways to cope; I need to be courageous and present for our family. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As I sift through my emotions, I find some calm in the one
thing that has always been available to me—my hypothetical, historical rear-view
mirror. I often find it helpful to gaze in my rear-view mirror in order to gain
some significant perspective on a current situation.<span style="mso-spacerun: yes;"> It allows me to use lessons from the past to cope with challenges that lie ahead of me.</span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Looking
all the way back to when my sons were babies, and moving forward through some
of the toughest challenges of my life to-date, helps me see that each one held a
special gift.<span style="mso-spacerun: yes;"> </span>Each challenge holds a
special memory in my bank that I can draw on when I need that sliver of
perspective. <i style="mso-bidi-font-style: normal;">In hindsight, those gifts
seem to be far more worthwhile than the actual time we spent toiling over the
challenge</i>.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I’m
not particularly fond of the word “challenge”. I think it’s been grossly
overused to the point where it no longer reflects the actual depth of each point
it attempts to describe, but there isn’t always another word available. The
fact is, who doesn’t have challenges in this human life, after all?<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
</div>
<ul>
<li><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">When
we received a diagnosis of Fragile X Syndrome for both of our sons within a
short span of months, my husband and I suffered heart-wrenching agony over the
loss of “normalcy”. This taught us <span style="color: #38761d;"><b>grace and passion</b></span> for each other and our
family beyond anything we could have gained otherwise.</span></li>
<li><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
we painstakingly navigated ages 0 to 7 years with our sons, we wondered why the
word “sleep” was ever created. We had not seen much of it! We were consumed
with attempts to get them to rest, particularly our youngest,
who, as it ended up, did not sleep through the night until he was 7-years-old.
We steered our way blindly through each day and then each night as the years
passed and we grew more and more weary. It took 7 years, but those days and
nights did come to pass and we are all finally sleeping. Now, it only seems
like a distant memory, but vital in the scope of life teachings. This difficult
lesson taught us to <span style="color: #38761d;"><b>appreciate good sleep and all that is brings to each day</b></span>.</span></li>
<li><span style="font-family: "times new roman" , serif;"><span style="font-size: 14pt;">When
we grew frustrated and tired over, what seemed like eternity-but was probably
2-3 years, our youngest son chewed the collar of his t-shirt until the
seams separated and we continually applied cream to his raw chin until we were
blue: this experience taught us <span style="color: #38761d;"><b>patience and </b></span></span><span style="font-size: 18.6667px;"><span style="color: #38761d;"><b>resilience</b></span></span><span style="font-size: 14pt;"><span style="color: #38761d;"><b> beyond anything we could have imagined</b></span>.</span></span></li>
<li><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We ached from hunching over as we held our sons hands above his head and emulated the motions of walking, praying all the while that he would walk at the
conventionally appointed time, only to be shown that <span style="color: #38761d;"><b>forbearance was a crucial
skill that we must learn</b></span>. Each of the boys reached this milestone in their own
time, but they did walk!</span></li>
<li><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
cried and tried to anticipate the day when Jake would utter his first words. Our
patience grew weaker and weaker as the years passed. We thought we had done
everything we could do to facilitate the arrival of that huge milestone.... it
finally came at the age of 6 when he was completely ready himself. <span style="color: #38761d;"><b>This taught
us faith in things we could not change</b></span>.</span></li>
<li><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
remember a seemingly insurmountable sadness and worry over our years of
struggle with our youngest sons’ aggression as he navigated through puberty.
<span style="color: #38761d;"><b>This poignant challenge taught us morality and then it taught us everything else
we needed to know on how to live the Fragile X Way</b></span>.</span></li>
</ul>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
we face yet another struggle of unknown origin with an unknown cure, we find
peace in that ole’ rear-view mirror once again. Joe, who has never had an OCD tendency
in his life, unlike Jake whose had so many we couldn’t possibly count, developed an OCD behavior that we have not yet remedied despite 9 full months
(so far) of attempts. The facts and attempts at a solution read something like
a case study which I may blog about in the future, but for now remain an
action plan. We are learning more about persistence and perseverance….even at
the ages of 28 and 30.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
could easily describe in endless detail 1,000 struggles, 1,000 trials and
tribulations, 1,000 gut-wrenching challenges. The truth is, now that years have
passed, I am able to look through that rear-view mirror and glean so much perspective
that I am able to cope more easily. I only wish I could take back so much of the
time and effort I wasted worrying about those challenges. This is a lesson
in-and-of-itself for me. I wish there was a way I could gift that lesson to the
many other families that I know that struggle with these things.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Even
though I still have momentary bits of panic, my sense of urgency gets less and
less; my acceptance of our life grows calm. <span style="mso-spacerun: yes;"> </span>Milestones come and go without incident
despite that worry. I have faith that it’s all going to be ok.<span style="mso-spacerun: yes;"> We'll get through this birthday with jubilant celebration for all of our sons' accomplishments and the joy that he brings to us every day. Thirty is just a number--not an accurate reflection of the "miles" we've traveled.</span><o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Besides a birthday, this
week, our family also hits another huge milestone. We are planning our 6<sup>th</sup>
airplane flight with the guys, but our first international flight. It will be a glorious break from the cold winter we are having here in Colorado. Both boys have
somehow mastered the major steps required to take a flight, so adding a couple
of steps for Customs and Border Security should be easy enough.<span style="mso-spacerun: yes;"> </span>As a precaution, I’ve advised Chris that he and
I should have a little drinky-poo on the plane so that we can set a good
example and be ultra-relaxed when we arrive to face whatever unexpected,
uncontrollable issues arise. It never hurts to be prepared.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Just
in case, I’m packing a rear-view mirror.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span></div>
<i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i>Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com2tag:blogger.com,1999:blog-6537170817799988298.post-73199724612003932112018-08-27T13:21:00.001-07:002018-08-27T13:21:46.386-07:00THE SOUND OF SILENCE<br />
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Sometimes, after my husband and I slip into bed at
our usual 9:30 bedtime, I purposefully avoid going right to sleep so that I can
revel in the silence. The daylight hours in our home are a constant flow of
noise and movement, often making it difficult for my mind to be creative or
focused. In contrast, nighttime is so peaceful, quiet and somber. I relax into
the utter stillness of the house, listening to the breathing of all three men
as it fills the airwaves around me. Once their breathing is heavy and
unrestrained, I know I am alone in my thoughts. They are all asleep. Any
evidence of the day’s stress slowly begins to melt away, but as my thoughts
develop, another evil begins to creep in…..worry and fear.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">As a Mom, it’s my predisposition to worry.<span style="mso-spacerun: yes;"> </span>Every Mom worries. I suspect that some of my
worries and fears are similar to other Moms; like worrying when my kids are
sick, or worrying about a kid bullying them, or worrying if I am spending
enough time on priorities.<span style="mso-spacerun: yes;"> </span>There are
many common worries among Moms. But, as the Mom of two sons born with a genetic
cognitive disability, I know my worries and fears are somehow different.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><span style="mso-spacerun: yes;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">When our sons were very young, I had plenty of time
to worry and obsess over a solution to many challenges we were facing at the
time due to the fact that our youngest didn’t sleep through the night until he
was 7 years old.<span style="mso-spacerun: yes;"> </span>I distinctly remember lying
awake at all hours of the night worrying that our sons would never do simple
little things like drink from a straw, or say their first words. Anything to do
with the mouth was a huge worry, as is the case with many kids affected by
Fragile X Syndrome. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Another worry was whether or not our sons be able to
participate in fun things or would their days be dictated solely by
appointments to therapists, doctors or structured learning?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqo7U5Poan-R1Ralyt-PAfK4JteAOHBYd9141aVMG2Haps_cT0HDI-7pNhSy_7LNUP2-vYpyHL8vfBblK8bWVm-HWG-LWQyQoZoyneCL0rrFUMd3xR0SaPjtnkenCbVS5CPXFTqq84adA/s1600/Joe+Article0001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1097" data-original-width="1600" height="273" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqo7U5Poan-R1Ralyt-PAfK4JteAOHBYd9141aVMG2Haps_cT0HDI-7pNhSy_7LNUP2-vYpyHL8vfBblK8bWVm-HWG-LWQyQoZoyneCL0rrFUMd3xR0SaPjtnkenCbVS5CPXFTqq84adA/s400/Joe+Article0001.jpg" width="400" /></a></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">I came across a reminder of that challenge with
Joe. It was a newspaper article written about the special-needs basketball team
that he and our older son did and still do play on. When this article was
written some 13 years ago, Joe had only recently even been able to participate
in certain aspects of the game. It took us two long years to get him to even
want to be a part of basketball and to help him want to play. These poignant
photos reflect his inner conflict that was so evident to us at the time….him
painstakingly going through the emotions of something that was bitterly
difficult for him, but at one moment he was able to turn and gaze lovingly up
into the stands to emulate a kiss to his Dad—such symbolism that still rings
true today in some of the life challenges he faces on a daily basis.</span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Then you had other worries and fears; <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Would our sons ever be able to learn, grow and be
successful members of their community?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Would our sons ever have joy?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Would behaviors be the only thing that people saw
when they looked at or met our sons? Would those behaviors keep them from
living a full life? Would behaviors always be a part of their life?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Without verbal language, would our sons be able to
have friends or relationships, or even communicate their needs?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">And finally, the worry that plagues every single
parent of a child with a disability….who will love them when I am gone? Who
will care for them when I can no longer do it? That’s a doozy. That’s the thing
that keeps many, many people awake night after night after night with seemingly
no answer.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">When my sons, now 27 and 29 years old, were young, I
didn’t <i style="mso-bidi-font-style: normal;">choose</i> to enjoy the peaceful
quiet of the night, I was forced to lay awake waiting for the next need to
arise.<span style="mso-spacerun: yes;"> </span>This seemed to reaffirm my theory that
nighttime was the best time to solve all of the world’s problems. That is…until
I learned to admonish those worries and fears and shift my thoughts to
problem-solving mode.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">At my core, I consider myself to be a very
analytical person with a robust desire to think things through rationally then
come up with a plan to resolve whatever is plaguing my thoughts.<span style="mso-spacerun: yes;"> </span>That doesn’t mean that my strong Motherly
instincts didn’t keep me from years of allowing those wicked worries and fears
to stifle my sleep until I could rationalize my thoughts.<span style="mso-spacerun: yes;"> </span>This core desire is what lead me to find
people that could help me. There is no way that I could continue the path of
sleep deprivation and still be able to be an effective Mother.<span style="mso-spacerun: yes;"> </span>No. Way.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">I’ll go out on a limb and say that husbands and
Fathers don’t worry the exact same way as Mothers. At least my husband doesn’t.<span style="mso-spacerun: yes;"> </span>He is a “fixer”; a “doer”. He lies awake some
nights thinking about how he can fix a situation. He wants it resolved
lickety-split and he’s just the man to do it! Sometimes, he thinks that if he
raises his voice loud enough that, like magic, the desired result will appear. With
our sons, the fact that it doesn’t materialize that way, can be quite
frustrating for him. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Cambria","serif"; font-size: 14.0pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><i>I know in my heart that worry is not productive unless you
act to resolve those worries—but, putting this philosophy in motion is much
harder. </i><o:p></o:p></span></b></div>
<div class="MsoNormal">
<b style="mso-bidi-font-weight: normal;"><span style="font-family: "Cambria","serif"; font-size: 14.0pt; line-height: 115%; mso-ascii-theme-font: major-latin; mso-bidi-font-family: "Times New Roman"; mso-hansi-theme-font: major-latin;"><br /></span></b></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Many years ago, my husband and I met some amazing
experts who took us under their wing and taught us things that saved more than
my (our) sleep.<span style="mso-spacerun: yes;"> </span>They taught us how to
problem-solve with a whole “tool box” full of methods and approaches that me
and my husband could apply to our sons. Do you know how empowering that kind of
knowledge can be? It’s life-changing.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">They taught us specific things like calming and
coping, a method called “ready-not-ready”, video modeling, side dialogue and
many others that we could utilize whenever we needed to. Along with basic
therapies that incorporated speech and occupational therapy, they used a
combined approach to motivate our sons. As positive changes occurred, we found
ourselves more motivated than ever to want to learn more and to implement these methods in our everyday lives! <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">We had waited years to see smiles on our sons’
faces. They were able to be calm and focus on simple things that we had been
unsuccessful at engaging them in. It was magical.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">The amazing ladies we are talking about are Tracy
Stackhouse and Sarah (“Mouse”) Scharfenaker and team at a one-of-a-kind Denver-based
non-profit called <b style="mso-bidi-font-weight: normal;"><u>Developmental FX (DFX)</u></b>.
Every single day this team wakes up and gets to work changing the lives of
families all across the <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">world</i></b>! <span style="mso-spacerun: yes;"> </span>They have a very unique combined approach that
treats not only children (and adults), but the families as well.<span style="mso-spacerun: yes;"> </span>They help parents just like us to <u>know
what <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">to
do</i></b></u>; to feel empowered and filled with the knowledge that we need to
help ourselves and our children. Do you have any idea what that kind of knowledge
is worth??????<span style="mso-spacerun: yes;"> </span>We. Do!<span style="mso-spacerun: yes;"> </span>As a Mother of two significantly affected
sons with a challenging cognitive disability…I DO!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">This kind of knowledge is the difference between worry
and action. <span style="mso-spacerun: yes;"> </span>I remember an evening many
years ago after the boys had gone to bed, we started to reminisce about the big
growth curse the boys were on.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">I looked at my husband and said, “What do you think
about the idea that every single thing we have grieved about, every single
thing we have been fearful of, and every single worry we have had; it’s all
been about us?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">He looks at me like I have two heads and says, “What
do you mean?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">“I mean that, these boys were born with Fragile X
Syndrome. They do not know any difference. They do not know the fears we know.
They do not know worry the way we do. They only know what we project and what
we show them.” By now tears were streaming down my face.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">I continued, “Look at what they are capable of if we
project confidence. Look at what is possible if we commit ourselves to teaching
them and helping them. Everything to this point has been about our own grief,
not about what they are capable of.” <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">This revelation has been the pinnacol in our
lifetime of learning and continues to drive us to want to know more.<span style="mso-spacerun: yes;"> </span>It keeps us searching for answers and
resolution to worries and fears that we face.<span style="mso-spacerun: yes;">
</span>Some fears are ongoing and continue to show up at the top of the “to-do”
list—the resolution too scary for us to face, i.e., “who will love them
when we are gone?”. But, it must be done. An answer must be found,
eventually.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">So, we continue to reach out to those amazing, dedicated,
Fragile X whispers called <b style="mso-bidi-font-weight: normal;"><u>Developmental
FX </u></b>to help us sleep peacefully at night and not allow those evil fears
to dominate our thoughts. That’s why I, personally, have dedicated the past 15
years of my life to helping them spread the word about the incredible work that
they do. It’s worth that much to me. I want every family I know to have the
same benefits that I have had. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">*So, today I want to ask you to consider how much
this kind of peace is worth? <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">*Is it worth $10 or $20 or $100 to have THIS
organization continue to give peace to families?<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">*Consider a world without them…..<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">To have access to people who <i style="mso-bidi-font-style: normal;">know</i> what you are going through; to have a solution; to allow you
to help your own child; to help you see joy on your child’s face; to give you
as a parent the confidence to deal with just about everything that comes your
way, or to be able to call when you can’t….this is what DFX does. That’s what
they have done for us.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">Today, we feel like we have the basis of knowledge
to be able to cope with whatever fear comes our way, whatever challenge comes
our way, whatever life throws at us<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">…..it’s a good thing because 5:30 a.m. comes early
and quick.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><b style="background-color: lime;"><a href="https://www.coloradogives.org/DevelopmentalFX/overview" style="background-color: lime;" target="_blank">DONATE TO DFX</a></b></span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhClzfjOqy5EMTlAx5L90Yy3DXqBUcxPjXxH7s0QUF0TMFDkcvpEKXSNBmI5yP2kD5qSv9Pk6VIl3tw-AMr7UxfpU-YvMnjbDW0JRshHNlaaD-Mjbpkc6n7pEI6wJWI-ZMmMBieOX69cbs/s1600/Becoming+Mrs+Rogers+Cover.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1036" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhClzfjOqy5EMTlAx5L90Yy3DXqBUcxPjXxH7s0QUF0TMFDkcvpEKXSNBmI5yP2kD5qSv9Pk6VIl3tw-AMr7UxfpU-YvMnjbDW0JRshHNlaaD-Mjbpkc6n7pEI6wJWI-ZMmMBieOX69cbs/s320/Becoming+Mrs+Rogers+Cover.jpg" width="207" /></a></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;"><i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i></span></div>
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Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-28241552854696528412018-07-17T11:55:00.001-07:002018-07-17T12:21:21.846-07:00You Can't Do It Alone<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd6pZltB_MVhv86PYwoZ9yrc89n8UmWzPnfCZHk8T02sOZbfkZBmVTxiX7tB6tmMJ3NYyXnnCxVDtzSG8f4Hcl1GW967mnFwO6tIzevJNG5DSJESj1BUg1M4EmSZvCBd_8PJP-dOvne5o/s1600/15585210_10211751135556182_2461289289564016885_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="593" data-original-width="1600" height="147" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgd6pZltB_MVhv86PYwoZ9yrc89n8UmWzPnfCZHk8T02sOZbfkZBmVTxiX7tB6tmMJ3NYyXnnCxVDtzSG8f4Hcl1GW967mnFwO6tIzevJNG5DSJESj1BUg1M4EmSZvCBd_8PJP-dOvne5o/s400/15585210_10211751135556182_2461289289564016885_o.jpg" width="400" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
just returned from a quick trip to Cincinnati where I was privileged to attend
the banquet at the bi-annual International Fragile X Conference. It was a treat
getting to see so many of my old friends, and even meet some new friends. I am
often taken aback when I meet someone new and they start by saying, “You are
such an inspiration!” A feeling of embarrassment washes over me.<o:p></o:p></span></div>
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<div class="MsoNormal" style="background: white; line-height: 20.25pt; margin-bottom: .0001pt; margin-bottom: 0in; mso-outline-level: 2; vertical-align: baseline;">
<b><u><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.7pt;">Webster’s Definition of <span style="border: none windowtext 1.0pt; font-variant: small-caps; mso-border-alt: none windowtext 0in; padding: 0in;">inspiration</span><o:p></o:p></span></u></b></div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; vertical-align: baseline;">
<b><span style="border: none 1.0pt; color: #3b3e41; font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.5pt; padding: 0in;">1.<br />
a</span></b><span style="border: none 1.0pt; color: #3b3e41; font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.5pt; padding: 0in;"> <b>: </b>a
divine influence or action on a person believed to qualify him or her to
receive and communicate sacred revelation<o:p></o:p></span></div>
<div class="MsoNormal" style="background: white; line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in; vertical-align: baseline;">
<b><span style="border: none 1.0pt; color: #3b3e41; font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.5pt; padding: 0in;">b</span></b><span style="border: none 1.0pt; color: #3b3e41; font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.5pt; padding: 0in;"> <b>: </b>the action or power of
moving the intellect or emotions<o:p></o:p></span></div>
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<b><span style="border: none 1.0pt; color: #3b3e41; font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.5pt; padding: 0in;">c</span></b><span style="border: none 1.0pt; color: #3b3e41; font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.5pt; padding: 0in;"> <b>: </b>the act of
influencing or suggesting opinions<o:p></o:p></span></div>
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<b><span style="border: none 1.0pt; color: #3b3e41; font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.5pt; padding: 0in;">2.
<br />
a : </span></b><span style="border: none 1.0pt; color: #3b3e41; font-family: "times new roman" , "serif"; font-size: 14.0pt; letter-spacing: 0.5pt; padding: 0in;">the
act of drawing in; <i>specifically</i> <b>: </b>the drawing of
air into the lungs<b><o:p></o:p></b></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
don’t mean to seem ungrateful, but I often just want to crawl in a hole when I
hear that! Not at all because I’m not glad to have been, perhaps, a role model,
but because I don’t feel the compliment is warranted. After all, I am <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">just
a Mom</i></b> like most of the people who tell me this! I make mistakes on a
daily basis. I make bad decisions that I regret. I screw stuff up that I can’t
take back. I’m just doing the best that I can. AND, I also had a lot of help
getting to where I am today. Everything we are today is because someone taught us what to do.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Many
of the people that helped me survive a diagnosis of Fragile X Syndrome, the
most common form of genetic autism, for both of my precious sons, are the ones
who are an inspiration.<span style="mso-spacerun: yes;"> </span>They are the
ones that need to be thanked for giving me the communication that allowed me to
have 'sacred revelations'! <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">One
of the most poignant revelations that my husband and I reflect on almost daily is one that I wrote about in great detail in my book, <i style="mso-bidi-font-style: normal;"><u>Becoming Mrs. Rogers</u></i> (turn to page 129 in your books). If
you haven’t read it, check it out on Amazon (<a href="https://mrsrogersworld.com/becoming-mrs-rogers/" target="_blank">Becoming Mrs. Rogers</a>).<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
fact is that every single hurdle we’ve faced has been approached with fear, but
overcome with determination and tools.<span style="mso-spacerun: yes;">
</span>Those tools are the product of someone who passed them on to us. We were
and are just the delivery system--the messenger! <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">From
the moment we were diagnosed with Fragile X Syndrome in 1991, there was an
amazing Dr. right beside us, Dr. Randi Hagerman, helping us cope with
medications or advice on where to look next. As time went by, we were blessed
with a new Doc, Dr. Nicole Tartaglia at Children’s Hospital here in Denver
where we live, again, supporting our every need.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">From
the time our boys started school, we had some amazing bus drivers, paraprofessionals,
teachers, therapists and administrators dedicated to helping our sons move
forward in their learning and their lives. Sure there were those with less than
perfect methods, but the ones that stood stead-fast by our side made up for the
short comings of others. Nothing in the world is perfect.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
we progressed through the years with difficult questions about coping and
calming and toileting, Dr. Karen Riley was there, along with Dr. Marcia Braden,
offering their expertise based on years of experience with others facing the
same challenges we had.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">From
the moment we were told that our sons needed intense OT and Speech therapy,
amazing therapists like Tracy Stackhouse and Sarah Scharfenaker (aka “Mouse”)
of Developmental FX (<a href="http://developmentalfx.org/" target="_blank">http://developmentalfx.org/</a>) were there. They taught my husband and I methods and
approaches that we will use still today after many years…and we continue to learn. I
believed in their philosophy so much that I’ve served on the Developmental FX Board
of Directors for 15 years!<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Knowing
that there were people in our world to help us, made us feel less alone and
capable of helping our sons get through the toughest day. It has taken a lot of
people with a lot of expertise to help us make it to where we are today.<span style="mso-spacerun: yes;"> </span>The journey is not over, so we will continue to
need help! But, those helpers will not be there forever. We are now realizing
this. It’s a tough reality to face.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
admit it…I have taken some of these helpers for granted. This fact became quite
clear to me when Mouse recently announced her retirement from day-to-day
treatment for families. She’s planning to retire in December, 2018, and this
will be a sad day in the <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">Rogers Neighborhood</i></b>. Mouse is still
planning to give of her time to a world that she has so generously dedicated
her life to, but it will be an abbreviated schedule, reserved solely for
special projects. One of these special projects will be working alongside Tracy
on some long overdue projects, including a book on the day-to-day
strategies used in working with children and families affected by Fragile X
Syndrome (FXS). I, personally, cannot wait to read this!<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Damn
them all for wanting a life of their own! Right? What will we do when every one
of them decides to retire? I can’t bear the thought. There are brilliant newcomers
being trained as we speak so don’t fret. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">All
of this has made me think about how much and what a
huge influence they have had on our life! THEY are the inspiration. They are
the ones that influence action, and communicate sacred revelations that
influence our day-to-day life.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
are the ones who dedicate their lives to the betterment of ours.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
are the ones that move my intellect closer to being able to cope with any
challenges that come my way.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
are the ones that push my emotions toward hope.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
are the ones that influence or suggest opinions that reflect the very best in
the field of Fragile X.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">They
are the ones that allow ME to draw air into my lungs day after day after day
despite some of the challenges that cause me to drop to my knees and beg for
answers.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">During
this month of July, also named <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;"><u>Fragile X Awareness Month</u></i></b>, I
plead with you to think about those people or organizations that have truly
helped you through whatever journey you are facing. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">If
you can’t give money, give your time.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">If
you can’t give your time, create something to donate to their auction or their
cause.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Show
them that they mean something to you.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Show
them how much they have given to your life.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Show
them how much they have helped you to make it to today.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">For
that help may not always be there, don’t let it slip away.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">You
cannot do it alone.<o:p></o:p></span></div>
<br />
<i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i>Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-40428192015986728012018-05-21T15:04:00.002-07:002023-07-03T19:42:29.227-07:00You Are Special<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCpM1TTFhd216N_DIAFXzukc2GMB1vveJd0EIWiyvEQY2B5yjHmKbppGOm6U1GGbfcUwAmiXmB6qsDnkYwsd8Pf6rVaipRkISnYEZUt2LYrA98tslYjOjg9CqT2zmOIapoOoNrG8Nohfs/s1600/Jake+with+mister+rogers+cropped.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="690" data-original-width="653" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiCpM1TTFhd216N_DIAFXzukc2GMB1vveJd0EIWiyvEQY2B5yjHmKbppGOm6U1GGbfcUwAmiXmB6qsDnkYwsd8Pf6rVaipRkISnYEZUt2LYrA98tslYjOjg9CqT2zmOIapoOoNrG8Nohfs/s320/Jake+with+mister+rogers+cropped.jpg" width="302" /></a></div>
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<span style="font-size: 14pt;">From the moment he could sit up and
watch television, our oldest son was fully enamored by <i style="mso-bidi-font-style: normal;">Mr. Rogers Neighborhood</i>. As a toddler, he had no idea what the
words, “You are special just the way you are” meant, and we as parents, had no
idea what an impact they would have on our way of life.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">Each morning, Jake would creep over to
our behemoth console television, pull himself up to a standing position, and
stare intently as the John Costa piano introduction of <i style="mso-bidi-font-style: normal;">Mister Rogers’ Neighborhood</i> began. He’d stand statue-still while
touching the glass, completely focused on the scene as it shifted from a birds-eye
view of the model neighborhood to Mr. Rogers himself entering his television
house. The real truth was that he was waiting for his favorite part…the moment
when Fred would remove his suit jacket, grab the wooden hanger, hang up the
jacket, then remove his sweater from another hanger…the hanger would dangle
from the closet rod as Fred slowly closed the closet door to begin his lines. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">As he grew, Jake would start each and
every day waiting for the school bus while watching <i style="mso-bidi-font-style: normal;">Mister Rogers Neighborhood</i>. Twenty five minutes later, he’d be
faced with the toughest decision of his day—whether to stay home for the final
goodbye from Fred, or run for his beloved bus. That situation was serious! He
loved both with every cell of his body.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">Day after day, year after year, Jake’s
love for <i style="mso-bidi-font-style: normal;">Mister Rogers Neighborhood</i>
was a steady comfortable part of his routine. For him, the world of
make-believe and <i style="mso-bidi-font-style: normal;">Mr. Rogers’ Neighborhood</i>
really existed as Fred came into his living room and spoke to him in his calm,
monotone voice each day. When Jake was young, we didn’t realize what power
there was in the thing he loved most.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14pt;">Jake dearly trusted Fred, and since Jake
was diagnosed with Fragile X Syndrome and Autism at the age of two, we learned
how that trust could be helpful in our everyday life and in communicating with
both he and his brother, Joe, who was also diagnosed with the same. Mr. Rogers had a
gentle way of helping children understand things in a calm, soothing way, while
often teaching something important.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14pt;">When we were at our wits end in helping
Jake’s behavior at school at the age of 10, we developed a reward system using <i style="mso-bidi-font-style: normal;">Mister Rogers Neighborhood</i> videos as a
motivator.<span style="mso-spacerun: yes;"> </span>Boy, did that work! For every
day that Jake achieved his goals for the day, he earned a dollar. We pinpointed
an end goal ahead of time and Jake could work toward that goal.<span style="mso-spacerun: yes;"> </span>Without fail, he would choose to earn enough money to
buy another episode of <i style="mso-bidi-font-style: normal;">Mister Rogers
Neighborhood</i>.<span style="mso-spacerun: yes;"> </span>At the age of 29, he
still prefers that purchase over any other, although his interests have spilled
over into the world of <i style="mso-bidi-font-style: normal;">Star Trek the Next
Generation</i>, too, but that love is not nearly as deep as his love for <i style="mso-bidi-font-style: normal;">Mister Rogers Neighborhood</i>.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">He owns every book published by Fred
Rogers, as well as at least one copy of every video and DVD available. Without
uncertainty, I believe Jake is Fred’s number one fan! His brother, Joe, is fast
becoming the second.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">Years ago, when we struggled with potty
training Joe, we incorporated the reading of “Going to the Potty” (1986), and
watching “When Parents Go To Work” (episode 1614 from 1989), where he sings
“You Can Never Go Down the Drain”, as a part of our daily routine. I’m not sure
if the book or video actually helped, but we like to think it was instrumental
in giving some comfort to Joe ……..or at least subsequently, to his parents.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14pt;">When our beloved dog, Elmo, died, we
watched the episode, “Death of a Goldfish” (1970-Episode 35), and read
comforting words from his book, “When a Pet Dies” (published 1988). The boys
love to hear my imitation of Fred’s voice as I attempt to read to them in a
steady, calm voice. It’s amazing how they get that it’s really Fred’s words,
and not mine. The phrases emanate his understanding ways, and the words are categorically
his.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14pt;">We’ve embraced these same methods when
we’ve experienced the loss of someone close to us. Simply reading passages
from, “The World According to Mister Rogers” (2003) was helpful. Any tragedy
that occurs in our world requires moments of comfort and understanding, and we as parents must be the driver. It can
often be difficult to interpret our sons’ feelings caused by the world around
them since they possess little ability to express, and we find it very helpful
to give them the opportunity to express those feelings through Fred. You see,
it is not unusual for tears to begin flowing once we sense something going on,
and then we sit calmly to read words from a comforting person, Mister Rogers. The very first
time this happened we, as parents, learned the power of Mr. Rogers’ words. We
also learned that that power would be a reigning force in the way <i>we learned</i>
how to best interact with our sons.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14pt;">Suffice it to say, that we’ve used every
Fred resource over the years. One of the most notable was a situation from 2016. </span><span style="font-size: 14pt;">Jake and Joe had never flown on an airplane before, and we knew it
would take a methodical, calm approach in order for it to be successful when
traveling with 2 sons with special needs.</span><span style="font-size: 14pt;">
</span><span style="font-size: 14pt;">Needless to say, it was incredibly helpful to incorporate watching an
episode of the program entitled “Divorce” (episode 1480, 1981) where Fred visits
an airport and tours an airplane, and to read </span><i style="font-size: 14pt;">Going on an Airplane</i><span style="font-size: 14pt;"> (1989). The whole experience was amazing for
our family! If you want to read the whole story, visit my very detailed blog
here </span><a href="http://mrsrogersfxneighborhood.blogspot.com/2016/01/its-lofty-goal.html" style="font-size: 14pt;" target="_blank">It's A Lofty Goal!</a><span style="font-size: 14pt;"> </span><span style="font-size: 14pt;">Being able to fly as a family
has really opened up many doors in our small-but-full world.</span><span style="font-size: 14pt;"> </span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: 0in;">
<span style="font-size: 14pt;">As parents, it was to our advantage to
embrace Fred because it became such an effective way of learning, teaching,
motivating and connecting on an emotional level with our sons. While we were knee-deep in learning how to bend down and meet our boys where they were, we also learned how to embrace <i>Mister Rogers Neighborhood</i> as part of our daily life. Because we
embraced him, it was such a shock for us to learn of his death on February 27<sup>th</sup>,
2003. When we heard the news, we cried big tears for the loss of a man that
brought so much to the world, and so much to our sons. We had to find ways to
keep him alive for them.<span style="mso-spacerun: yes;"> </span>Of course, they
had no idea that he was gone. There really wasn’t any way for us to portray the
loss of someone that continued to come to them in the very same way he had
since the beginning of time….so we didn’t even try.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">We made our very first trip to
Pittsburgh, PA, in 2007, where we visited the Pittsburgh Children’s Museum! At
the time, they had the complete television set from </span><i style="font-size: 14pt;">Mister Rogers Neighborhood</i><span style="font-size: 14pt;"> as well as a wonderful collection of
memorabilia from the show. We </span><span style="font-size: 18.6667px;">traveled</span><span style="font-size: 14pt;"> all the way from our home in Colorado
to PA in our beloved RV, lovingly named “Rocket” (an homage to the
program “Little Einsteins” which is another learning-based program). Having
Rocket has made a whole wealth of possibilities available to our family, while
still providing all of the comforts of home that our sons need. We took the
time to also visit LaTrobe, PA, which is the home of Idlewild Amusement Park
(where Trolley used to live but now </span><i style="font-size: 14pt;">Daniel
Tiger’s Neighborhood</i><span style="font-size: 14pt;"> lives), as well as the birth place of Fred
himself.</span><span style="font-size: 14pt;"> The looks on our sons’ faces as
they took in every sight and sound—each one unfolding right in front of them--was
the stuff that dreams are made of.<o:p></o:p></span></div>
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<span style="font-size: 14pt;">Since that trip in 2007, we have made 3
others, and are currently preparing for another. Now, the television set
resides in the Heinz Museum in Pittsburgh, and is all ready to celebrate the 50<sup>th</sup>
Anniversary of <i style="mso-bidi-font-style: normal;">Mister Rogers Neighborhood’s</i>
television debut. We decided that we couldn’t miss it. We’ll journey in Rocket,
as always, to Pittsburgh, then on to a little town just south to visit the
Trolley Museum where Fred once visited (Episode 1531, 1984, entitled “Grandparents”).
We’ll visit a few friends along the way (we have friends in just about every
State since we share a journey that no one wants to be a part of but is so glad
they joined—that of Fragile X), then visit the amazing train museum in
Strasburg, PA, because Fred and our sons love trains!<span style="mso-spacerun: yes;"> </span>We can’t forget a visit to the Idlewild
Amusement Park and Soak Zone in LaTrobe, if nothing else, but for some shopping
for Mister Rogers memorabilia!<span style="mso-spacerun: yes;"> </span>How else
can we celebrate this milestone year?<o:p></o:p></span></div>
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<span style="font-size: 14pt;">One of Jake’s very favorite episodes of
Mister Rogers Neighborhood has always been, “Music” (episode 1547, 1985) where
Fred visits the infamous Yo-Yo Ma, world-renowned cello player, at Negri’s
Music Shop.<span style="mso-spacerun: yes;"> </span>So, Jake and I will brave a
sold-out crowd to see Yo-Yo at Red Rocks Amphitheater here in Colorado in
August.<span style="mso-spacerun: yes;"> </span>The tickets cost an entire
paycheck, but….oh well…you only live once. I cannot wait to see the look on his
face when he sees Yo-Yo.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14pt;">Then, we hope to get tickets to see
Itzhak Pearlman next February when he performs with the Colorado Symphony
Orchestra so that both of our sons can experience another of their favorite
visitors to <i style="mso-bidi-font-style: normal;">The Neighborhood</i> (episode
1670, 1993). Fingers crossed. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">All of these are memories that will last
a lifetime, no matter the cost. It is priceless for us to see our now, 29 and
27 year-old sons enjoy things in their life—even if they are things that others
might consider childish. As I watched yet another episode of <i style="mso-bidi-font-style: normal;">Mister Rogers Neighborhood</i> on the PBS
channel (thank you Amazon) the other evening, I noticed so many things that are now obsolete and it made me sad. When Fred answered the landline phone and
spoke to someone, or when Mr. McFeely came and again used the phone to call, or
when the actors imagined play scenes in the “Neighborhood of Make Believe”, or
when they talked about building a school where kids can feel safe and the
puppets believed it. These things need to be revisited….we need to embrace
those things again. <o:p></o:p></span></div>
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<span style="font-size: 14pt;">My husband and I never imagined that our
sons would come as far as they have compared to when they were just babies. Back then, we imagined the
worst. Then, this kind, calm man came into our living room and told our sons
that they were special just the way they are, or that they make each day a
special day by just your being you. It ended up being so true. We all just had
to get to the place where we could believe it.<span style="mso-spacerun: yes;">
</span>I think we took a Trolley through the Neighborhood of Make-Believe,
through many different places where we learned many lessons and were asked many
questions, and finally we arrived at Mr. and Mrs. Rogers Neighborhood where we
could live happily ever after.<o:p></o:p></span></div>
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<strong><i style="mso-bidi-font-style: normal;"><span face=""calibri" , "sans-serif"" style="color: #26323e; font-size: 14pt; letter-spacing: 0.4pt;">"Part of
the problem with the word </span></i></strong><em><b><span face=""calibri" , "sans-serif"" style="color: #26323e; font-size: 14pt; font-style: normal; letter-spacing: 0.4pt;">disabilities</span></b></em><strong><i style="mso-bidi-font-style: normal;"><span face=""calibri" , "sans-serif"" style="color: #26323e; font-size: 14pt; letter-spacing: 0.4pt;"> is that it immediately suggests an
inability to see or hear or walk or do other things that many of us take for
granted. But what of people who can't feel? Or talk about their feelings? Or
manage their feelings in constructive ways? What of people who aren't able to
form close and strong relationships? And people who cannot find fulfillment in
their lives, or those who have lost hope, who live in disappointment and
bitterness and find in life no joy, no love? These, it seems to me, are the
real disabilities."—Fred Rogers</span></i></strong><i style="mso-bidi-font-style: normal;"><span style="font-size: 14pt;"><o:p></o:p></span></i></div>
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<br /></div>
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<span face=""calibri" , sans-serif" style="color: #26323e;"><span style="font-size: 18.6667px; letter-spacing: 0.533333px;"><br /></span></span></div>
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<span face=""calibri" , sans-serif" style="color: #26323e;"><span style="font-size: 18.6667px; letter-spacing: 0.533333px;">To learn more about Cindi Rogers and her book: Please click <a href="here: https://www.amazon.com/Becoming-Mrs-Rogers-Learning-Fragile-ebook/dp/B00NLY0V2E/ref=sr_1_1?crid=82YHDJXPP6VI&keywords=cindi+rogers+becoming&qid=1688422496&sprefix=cindi+rogers+becoming%2Caps%2C137&sr=8-1" target="_blank">"Becoming Mrs. Rogers-Learning to Live the Fragile X Way"</a></span></span></div>
<br />Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-47064825713501653812018-05-07T08:28:00.000-07:002018-05-07T13:08:29.658-07:00LEARNING TO CLIMB<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCUnP9ZyBhMc1lK410ybhjLOnSBKqbXd7N2gosRHQszJK5dH3Zu-3yGAk42U14YOq-ZS8Wz86GgvitUf4CvA1L7BNFmW56B2VcJJgUQgS7NXHlpEAnHJa01114LAiU26bSSVuIzLa-C9Q/s1600/CO+Mountains.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1147" data-original-width="1600" height="229" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCUnP9ZyBhMc1lK410ybhjLOnSBKqbXd7N2gosRHQszJK5dH3Zu-3yGAk42U14YOq-ZS8Wz86GgvitUf4CvA1L7BNFmW56B2VcJJgUQgS7NXHlpEAnHJa01114LAiU26bSSVuIzLa-C9Q/s320/CO+Mountains.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Every
life has its challenges.<span style="mso-spacerun: yes;"> </span>Those that my
husband and I have overcome together have been some of the toughest, starting
with the day we received our genetic diagnosis for our two precious sons some
27 years ago.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
believe it’s no coincidence that we live in Colorado, allowing us the splendor
of living among some of the highest peaks in the world. Our life has
forced us to become involuntary hypothetical mountain climbers when it comes to
facing and overcoming those challenges, so being in Colorado makes it
ever-so-convenient.<span style="mso-spacerun: yes;"> </span>In climbing terms,
we could be considered what are called Alpinists, those who practice many
different types of climbing, due to the fact that we’ve scaled mountains,
boulders and sheer cliffs, all requiring a different skill-set. I know very
little about <span style="mso-spacerun: yes;"> </span>real mountain climbing,
sport climbing, bouldering or even free solo climbing—in reality I’ve never
(and never will) do any of these. I am way too cautious to attempt such a
feat….besides, my vertigo wouldn’t like it. My husband, Chris, might like to
try, but I suspect he has many other things he’d like to try before that.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
clearly remember the day 27 years ago, when that diagnosis was laid in our
laps. It was like Chris and I were standing at the base of a sheer cliff,
looking up and wondering how we would ever begin; if we would have the strength
to make it even halfway; or if we would cascade to our deaths?<span style="mso-spacerun: yes;"> </span>How could we take step one when our grief was
so immense? Even if we took the first step together, how could we manage to
stay in tandem? Would we have what it took to climb as a team? Could we finish
together and still love each other at the summit?<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Just
as John Gray suggested in the ethereal Venus and Mars scenario from his book,
Chris and I did not follow the same path when it came to the actual grieving
process. We were each very different in our phases of grief and our behavior as
a result.<span style="mso-spacerun: yes;"> </span>There are parts of the actual
stages that I don’t remember well, or choose not to remember well (leave it to
selective memory retention).<span style="mso-spacerun: yes;"> </span>We are
quick to remind each other about some of the more memorable days, grimacing at the memories, while simultaneously bidding them a fond adieu.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">In
my own journey of grief, whenever I felt angry, I would find myself crying over
the smallest thing, like when Joe bit me for the first time—he was only one. I
questioned whether this boy that was born from my womb actually loved his
Mother. It seemed so vindictive at the time. I blamed the gene. Crying was my
way of showing anger.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It
was easy to get through denial since I was engrossed in my corporate job
working 60 hours a week, while a caregiver took on the role of
moment-by-moment--a role I would later take on full time as a
corporate-Mom-goes-stay-at-home.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
waffled between anger and denial for a few years, throwing in some bargaining
tactics.<span style="mso-spacerun: yes;"> </span>I was convinced that if I spent
enough money, if I toted the boys to enough therapy appointments or “Mom and
me” classes, that they would somehow be cured. We wrote checks with the promise
of a cure and banked on those organizations’ success to help us tackle that unattainable
sheer cliff. Suffice it to say that the bargaining tactics didn’t erase one
single genetic footprint or cure our sons.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Day
after day, week after week, month after month, somehow Chris and I kept going.
Some days it was like scaling a small foothill with occasional boulders and a
gradual slope—other days it was excruciating mini steps up a wall that pointed
in a backward direction. During those more difficult days, I was alone. I was
forced to use my fingertips to try and place the next foothold or hook in order
to lift myself up. Chris could not be with me.<span style="mso-spacerun: yes;">
</span>I was far ahead of the place where he was and there was no way for me to
help him catch up. He was physically on a more gradual track.<span style="mso-spacerun: yes;"> </span>I had to move ahead at a faster pace since I
was with the boys in what I like to call the full-emersion program.<span style="mso-spacerun: yes;"> </span>Chris was on the part-time track, working
full-time outside the home.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">His
progress through anger and denial were so much slower than mine. Little things
seemed to set him off, like when a tool wouldn’t cooperate just so, he’d yell
and curse. He’d blow off my frustration by saying things like, “Oh, he’ll (one
of the boys) get over it”. I knew they wouldn’t, and I knew this was his own
denial showing through. I also noticed his lack of acceptance (denial) in the
way he would respond to others about the way our son did this or that in
public. His anger was outward and palpable, unlike my own. He never cried like
I did.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">There
were evenings when he would return home from a long day, only to hear me
complain non-stop as I broke into tears of exhaustion. He was often at a loss
for words, and emotionally unsure about how to feel. I believe he was at a loss
on how to support me, too, which made it even more difficult as a couple. He
couldn’t be in the same phase as me when it came to emotions.<span style="mso-spacerun: yes;"> </span>In his defense, and in hindsight, he did an
amazing job based on the tools he had to offer. Somehow I made it through to
acceptance and I thank God every day that I made it.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">For
Chris, on the other hand, like many men I know, he was not as transparent in
his feelings. Small things would incite a larger-than-deserved angry spell. His
temper was much shorter, and frustration was sitting just on the surface of any
activity. Sometimes, the words flowed out of his mouth in angry phrases,
causing me to question his love for our precious sons. Then,there were times
where his utter silence caused me to wonder how I would cope. I was in no
condition to help him cope when I was struggling myself. It was a very
difficult time with no real end in sight. We just kept climbing and climbing, pausing
at times for emotional gridlock, then going on almost at a turtle’s pace. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
a couple, we teetered between an attempt to comfort each other in our shared
grief, and resisting a pull that forced us to back away from any constant
reminders of our inevitable reality.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Then,
years into the grieving, one real day of helplessness came to pass.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Chris
arrived home as usual. I had dinner ready, so we sat down to eat as a
family.<span style="mso-spacerun: yes;"> </span>The boys finished at their usual
lightning speed and left the table. Chris and I reviewed the moments of the
day, pausing in between bites. Silently, Chris placed his fork on his plate,
took a drink of water, and dropped his head. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
asked, “What’s the matter?”<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">He
raised his head and I saw tears in his eyes that I had not seen in years. My
heart sank into my stomach. I stopped eating, too. Chris sat for a moment in silence,
collected himself, then he began to speak. He was ready for me to help him. I
was afraid I wouldn’t be there to hoist him up when he needed it most.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">He
talked about his real fears for us, for the boys and for our life. The words
poured out slowly and steadily, telling me that he had been thinking about
these things for quite some time. It had been roughly five years since our
diagnosis.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
most excruciating thing for me was to not be able to take the pain away for
him. This was the one man I dearly loved. I wanted desperately to hand him a
pill or an antidote that would help him speed ahead to the place of acceptance
where I was.<span style="mso-spacerun: yes;"> </span>I needed him to be beside
me….but, it wasn’t possible. That’s not the way grief works.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
he spoke, I realized exactly where Chris was on our journey up this
mountain.<span style="mso-spacerun: yes;"> </span>He was following the same
exact path I had taken, but now I knew without looking down where he was—I recognized
the signs from my own experience.<span style="mso-spacerun: yes;"> </span>He
wasn’t lost….just taking it at a slower pace than I was.<span style="mso-spacerun: yes;"> </span>I was able to see signs of where he had
been…..I also knew where he was headed.<span style="mso-spacerun: yes;"> </span>Seeing
these things allowed me to ask him some important questions that I had already
resolved in my own mind.<span style="mso-spacerun: yes;"> </span>I was able to
offer some comfort knowing that he, too, would make it through.<span style="mso-spacerun: yes;"> </span>We hugged and I held him in my arms.<span style="mso-spacerun: yes;"> He was on the trajectory of acceptance.</span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">There
is no time since that I could point to that was more poignant in our marriage or
that would define our future together. Prior to that time I often wondered if
we would be able to get on the same path or wavelength—if we would even make it.
I questioned whether we would be able to support each other in our climb and
our journey. I know had real hope that we could.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Over
the next several years (yes, years) we came together on many things, including
decisions, day-to-day approaches, discipline and what our future looked like.
It was so liberating…that mountain became a clearly marked path that contained
two lanes wide enough for both of us. Yes, there were still boulders to dodge
and some steep slopes, but the sheer cliffs had disappeared.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
haven’t reached the summit yet, but acceptance is a part of our every day life now.
There has been no tougher climb than the one we have traversed together, and I
wouldn’t have made it without him, nor he without me. It’s been the best lesson
ever…learning to climb, and the best partner to do it with. I think we are
prepared now to take on whatever obstacles come our way; foothills, high peaks,
sheer cliffs or gradual slopes….hand-in-hand.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"></span><br />
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<h4>
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 21.4667px;"><i>To learn more about her 5-star rated book, "Becoming Mrs. Rogers" or about Cindi, please visit <a href="http://www.mrsrogersworld.com/" target="_blank">www.mrsrogersworld.com</a></i></span></h4>
<div>
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 21.4667px;"><br /></span></div>
</div>
</div>
<br />Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-36341933777430678982018-04-09T13:14:00.001-07:002018-04-09T13:22:46.458-07:00The Month of April is More than Just the Word Autism & Disability--Mrs. Rogers World<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-HFMu1HnL7akCuVBplILneo-fWlxcf7uXO89iqRuLhBrgTmAAvtCzd6Cods8JsJUUovk9mGGTu_MVgFFLh4Oe48p5tAreKddQI2ZaoTQTz8W-w-Rl6WxLlSLbjwYajJKe3Biwl5M-jwY/s1600/2012-08-25_19-02-09_207.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="903" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-HFMu1HnL7akCuVBplILneo-fWlxcf7uXO89iqRuLhBrgTmAAvtCzd6Cods8JsJUUovk9mGGTu_MVgFFLh4Oe48p5tAreKddQI2ZaoTQTz8W-w-Rl6WxLlSLbjwYajJKe3Biwl5M-jwY/s320/2012-08-25_19-02-09_207.jpg" width="320" /></a></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
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<span style="font-size: 14.0pt;">Some mark this month as Autism Awareness
Month. For me, it’s the anniversary of our diagnosis of Fragile X Syndrome (the
number one cause of genetic Autism) 27 years ago.<span style="mso-spacerun: yes;"> </span>The other day, I also realized that I was 27
years old when we heard the dreaded words, “Your son has what’s called a full
mutation of a genetically passed gene called Fragile X Syndrome, and there is
an 80% chance that your newborn son will also have it.”<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">The significance of this month for me is
a bit profound…..it means that every day, every month, every year after this
will mark a tipping of the scales toward a majority…..I will now know that <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">more</i></b>
than half my life will been spent in the throes of disability. That one word
will define my minority past, every moment of my present, and perhaps be the driving
force behind my future.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;">I vaguely remember my past. Some days I
can barely remember yesterday! <o:p></o:p></span><br />
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">I recall one particular happy memory as
I sat in Mrs. Johnson’s 7<sup>th</sup> grade French class staring across the
room at this really cute boy.<span style="mso-spacerun: yes;"> </span>My mind
was dominated by thoughts of boys back then, and this one had my attention! His
name was Chris Rogers.<span style="mso-spacerun: yes;"> </span>After one clever
ruse with a candy bar involving Chris’ locker mate, I was able to gain his
attention in return.<span style="mso-spacerun: yes;"> </span>Leave it to the
stomach to be responsible for gaining a man’s heart. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">We spent years contemplating our future
together (eight to be exact) and conjuring up dreams. Those dreams were nothing out of the
ordinary, but to me they were enough…..enough of the good stuff to make a happy
life with the one person I wanted to spend it with…..marriage, a home, and two
kids we could nurture and help shape into good human beings. We envisioned a
future together after kids, walking barefoot on a beach holding hands with an
orange-hued sunset in the background.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">We took the first step with the vow of
marriage in August of 1985…..almost 33 years ago.<span style="mso-spacerun: yes;"> </span>We immediately bought a little house that we
made into a home, and where we still live today. Four years later, we welcomed
our first precious, beautiful son into the world.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">We never thought we could love something
as much as we loved him. His little vulnerable, warm body enveloped us and made
us even that much more motivated to do whatever it took to make his life as
close to perfect as possible.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">Our little guy ruled our every moment
with his cooing and smiling and his need for our care. We gave him all we had
to give…but that was not enough.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">By the age of two years, he was not
saying one single word. He’d already had numerous (too numerous to count) ear
infections, to the point of needing a daily dose of antibiotics to keep them at
bay. He was developmentally delayed in many other aspects, including walking.
We sought treatment, therapy and experts to help us figure out how something so
perfect could be struggling. These challenges were beyond our ability to help.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">Suffice it to say that we did get help
and we did get answers.<span style="mso-spacerun: yes;"> </span>The answer came
in the form of those life-defining words….Fragile X Syndrome. <o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">After a few months of further testing,
it was determined that our newborn son would also have the genetic curse. Our
lives would forever be transformed. I never knew that my own life would, from
that point forward, be guided by the word disability.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-size: 14.0pt;">Some four years later, after Chris and I
got our “poop in a group”, I began a whole separate journey deep into the world
of Fragile X Syndrome and disability. I joined the local support group; I read
all I could about next steps, and we spent countless hours with therapists and
doctors. </span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">There have been years and years of challenges, pain and tears in order
to help our sons reach all of the potential they can muster. These were the
years that blurred the memory of those dreams we had all those years before. <i>We lost
sight of our own dreams and ourselves while immersed in the intensity of caring
for the things we loved so much. </i><o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">We are the kind of people that feel
obliged to do everything possible until we can do no more and this situation
was no different. We learned every method and approach we could in an effort to
help our sons and the world around them. We spent countless hours helping
others learn about our sons in an attempt to make their world bigger and fill
it with people who love them.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">Over the past 27 years, Chris and I have
learned a thing or two about disabilities, Fragile X Syndrome and our sons:<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-We know what an IEP (Individualized
Education Plan) is, but that is only one-in-a-thousand acronyms that have become a part of our daily dialogue;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-We know that our boys <i>CAN</i> learn with
the right application and attention;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-People affected by Fragile X Syndrome
are incidental learners;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-Using a full scale of both visual and
audiological methods to communicate is essential for our sons;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-Every behavior <i style="mso-bidi-font-style: normal;">IS</i> communication;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-There are some incredible approaches
that work by some amazing experts out there, such as, ready-not-ready,
first/then, pic sims, social stories, video modeling, side dialogue, all-done
method, sensory support, peer modeling and the rhythmic approach. All of these
are part of our daily life;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-Love can only carry you so far—we have
to put in the work to affect change in outcomes;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-There is an amazing thing called
sensory integration, and the recipe is magic;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-The relationship between the parent and
teacher can be an incredible team, so hold on because you have 16 years of
endurance exercises.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-The real learning is by way of the
parents….not the children they raise. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">All of these things were a very
important part of our sons’ success toward living the quality of life that they
currently live, but the true learning was for Chris and I. In hindsight, I believe
some of the biggest lessons learned were involving us as parents.<span style="mso-spacerun: yes;"> </span><i>We had to see the reality in front of us and
learn not to focus only on what was missing in order to move forward</i>.<span style="mso-spacerun: yes;"> </span>We were backed into a corner and forced to
learn how to cope as a couple, as partners and as teammates. The ultimate
challenge for our marriage was in how to cope at different speeds and still
keep pace with each other. Some of the more poignant lessons were:<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-rearranging our priorities individually
and as a couple;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-coming to terms with our immediate and
future fate as parents of two sons with life-long disabilities;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-we desperately need to lean on each
other through the tough challenges—we are the only ones that truly understand
the circumstances;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-helping each other through the grieving
process, only to be thankful we both made it to the other side;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-discovering that sleep is often way
more important than sex when the boys were young—a fact that was a difficult
reality, but this also gave us something to look forward to;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-learning patience was one of the most difficult, but most helpful skills we gained through our children;</span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-realizing that it was pertinent we
rearrange our financial priorities in order to plan for our sons’ futures;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">-learning how to give up the old dreams
and make new ones.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">All of this learning has taken us 27
long years. But, here we are…standing upright, breathing in and out, surviving
and thriving.<span style="mso-spacerun: yes;"> </span>We are stronger for all of
the experiences. We’ve made it this far.<span style="mso-spacerun: yes;">
</span>We learned how to have hope when we couldn’t see any. We’ve grappled
with issues that none of our friends with typical kids will face. Now, we look
to the future.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">What does our future look like? It’s
hard to imagine sometimes. We’ve done a pretty good job as parents in making a plan
for the guys.<span style="mso-spacerun: yes;"> If nothing else, we've done our best. </span>We’ve spent lots of
dollars and countless hours preparing for their living situation and made a
plan for what will happen to them when we are gone. But, what about the time in
between? In the past, we could not see anything very clearly when it came to that chapter.<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">Thankfully, now, Chris and I are able to
see something….a glimmer of hope for a retirement just for us.<span style="mso-spacerun: yes;"> </span>There is still probably another 10 years of
research, heartache and learning, but it’s there…..<o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">It won’t look like our friends’
retirement.<span style="mso-spacerun: yes;"> </span>We won’t be able to pick up
and go across the globe whenever we want. We won’t be able to go without worry
or checking in at home (that’s where the guys will live when we retire—they will
kick us out). Our children will always be our children--they have no plans of “flying
the coop”. <span style="mso-spacerun: yes;"> </span>But, it’s a small, yet-to-be
planned glimmer of a chapter without the day-to-day hands-on management of the
guys’ lives. <o:p></o:p></span></div>
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<br /></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-size: 14.0pt;">We’ll take it.<span style="mso-spacerun: yes;"> </span>Together and as a team, we’ll get there.<span style="mso-spacerun: yes;"> </span>There is hope that the final chapter will not
be all about disabilities. That sight looks beautiful from here.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
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"Love isn't a state of perfect caring. It is an active noun like 'struggle.' To love someone is to strive to accept that person exactly the way he or she is, right here and now.”--Fred Rogers</div>
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<i><span style="font-size: 12.0pt;"><br /></span></i></div>
<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<i><span style="font-size: 12.0pt;">To
learn more about Cindi Rogers, here book or her work with Fragile X Syndrome,
please visit:<a href="https://mrsrogersworld.com/" target="_blank">www.mrsrogersworld.com</a> <o:p></o:p></span></i></div>
</div>
<br />Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com1tag:blogger.com,1999:blog-6537170817799988298.post-88063886945267239192018-02-08T11:27:00.005-08:002023-07-08T12:23:54.323-07:00The Courage to Fight<br />
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">As I reflect on recent events, I am reminded that this Fragile X life will have its challenges. The negative effect of this genetic
disability inherited by my 2 precious sons rears its ugly face less frequently now, but their need for
assistance will never fade. <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Recently, we have been even more aware of one
challenging behavior in our youngest son, now 26. This awareness has led me to retreat to a dark corner where I am revisited by a past sense of doubt and fear that I have not felt since the guys were very young.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">When Joe was about 10 years old, that place of doubt
and fear came to its pinnacle, causing me to first retreat into some pretty
extreme thoughts, only to emerge to a new place where I had the overwhelming
urge to fight. At the time, I had no idea where that urge to fight came from,
but looking back, it has become quite clear to me.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Prior to Joe turning 10, my husband and I learned
bit-by-bit about methods and approaches to help Joe.<span style="mso-spacerun: yes;"> </span>We wrung our hands and pondered whether or
not we had the courage to face his challenges and to really act upon them using
those methods.<span style="mso-spacerun: yes;"> </span>Every single method took
time and patience and resilience to learn and impose.<span style="mso-spacerun: yes;"> </span>None of them had any written guarantee that
they would work. Each one required us to be the guide and also be
consistent.<span style="mso-spacerun: yes;"> </span>Nothing would be easy on
this path. They also required us to listen and watch and wait. Our inner voices
were hard at work sending words of doubt into our daily routine in an attempt
to sabotage our efforts.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">If you’ve had the chance to read my book, “Becoming
Mrs. Rogers”, (<a href="https://www.amazon.com/Becoming-Mrs-Rogers-Cindi/dp/1497373409/ref=sr_1_1?ie=UTF8&qid=1518109325&sr=8-1&keywords=cindi+rogers&dpID=51Gct6X9geL&preST=_SY344_BO1,204,203,200_QL70_&dpSrc=srch" target="_blank">buy it here</a>) then you know we prevailed and how we did it, but if you haven’t,
then you might give it a read. Needless to say, we did prevail with the amazing
help of some resources. The real courage came when we took the first step to
ask for help, and the second came when we heeded that advice.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Over the years we have come to embrace many of the
methods and approaches in an attempt to help our sons become productive, happy
members of their community. They have many who care about them and that make a
difference every day. Don’t get me wrong….nothing is perfect! But, I work hard
to tamp down those negative thoughts of doubt….but sometimes it’s inevitable
that they will rise to the surface.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">When Joe started High School, he began to have some
pretty challenging behaviors during his school day, making it nearly impossible
for him to focus on any kind of tabletop activity or to participate in class.<span style="mso-spacerun: yes;"> </span>Again, we leaned hard on our resources—the amazing
team of Tracy Stackhouse and Sarah Scharfenaker (endearingly known as “Mouse”
to everyone) of Developmental FX here in Denver, Colorado where we live.<span style="mso-spacerun: yes;"> </span>We had been working with these intuitive
ladies for some years, so they knew Joe, and they knew he could be a challenge
at times. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">My husband and I had a consult with them to go over
what exactly was happening and determine, if we could, what was really going on
with our “Joe Man”. We discussed the specifics of his daily schedule, his
routine, and what areas were troublesome. What we discovered then was a poignant
fact that remains with us today.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">On a typical school day, Joe would ride the bus for
about 45 minutes to get to school, then walk a little bit to his home room
class. The first scheduled activity was one of the 3 “Rs”, reading, writing or arithmetic.<span style="mso-spacerun: yes;"> </span>Inevitably, Joe would begin some kind of avoidance
behavior like pulling his t-shirt up over his head, then laying his head on his
desk.<span style="mso-spacerun: yes;"> </span>Sometimes he would even cry if it
was an especially difficult day. Sometimes, he would physically engage whoever
was trying to verbally engage him, and this was not good. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">After two hours or so of attempted tabletop
activities, the students would go to gym class where Joe would be like a bird just
let out of a cage. He would jump around, run away and generally not participate
in any organized activity. Then, another classroom exercise followed by lunch
at a table sitting down. Joe would eat his lunch, but he would not stay with
his group or listen to the staff.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Just these facts alone brought up one very clear
issue with Joe in the minds of Tracy and Mouse….Joe NEEDED more gross motor
activities incorporated into his day. Gross motor activities are ones that use
the largest muscles in our bodies, like running or walking.<span style="mso-spacerun: yes;"> </span>This kind of plan can also be called a
Sensory Diet.<span style="mso-spacerun: yes;"> </span>I’m no expert, but I do
know that a sensory diet is VERY important to my sons and it has been and will be forever.
The requirements of that sensory diet has changed a lot over the course of their lives, but it still needs to be an
integral part of their day.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">So, we worked with the school to come up with a new
schedule for Joe, and subsequently for some of the other kids in his class.<span style="mso-spacerun: yes;"> With the change, </span>Joe would get off the bus, put his things away in his classroom, then walk directly to gym
class. After gym he would have one tabletop activity, then we created a new job
task for him that involved walking—mopping the hallways. After that, another
tabletop, then lunch. After lunch, we also created another job for Joe that he
grew to adore—picking up trash around the campus outside. We had no idea that
this task would be such a growth area for him, but the social implications were
amazing. Joe was allowed to purchase his own little push cart to hold the
trash, and then we taught him to use a little pincher-picker-upper thingy (do
you like my technical jargon?). As he walked the campus, the other students got
used to seeing Joe, and would answer his greeting of, “Hey!” We had several
years of magic growth for Joe during these years after we figured out the
answer to the symptoms. The schedule change was incredibly effective at changing the outcomes to make Joe successful for the remainder of his High School years.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal"><span style="font-family: "times new roman", "serif"; font-size: 14pt;">Now, in his adult routine, Joe comes home with his amazing mentor,
Daniel, after several hours of work, lunch and downtime, to our house. For the
past couple of years, this has resulted in Joe entering the house with the
power of thunder, throwing his backpack or earphones, shoving me (not hard),
then proceeding to stomp until I swear the floor will cave in.</span><span style="font-family: "times new roman", "serif"; font-size: 14pt; mso-spacerun: yes;"> </span><span style="font-family: "times new roman", "serif"; font-size: 14pt;">We’ve simply let this go on, not thinking completely about what Joe's needs are. As you can imagine, some days
are worse, some days are better, but we handled each one. I had little thoughts
about the fact that I needed to address this behavior, but that was it…just
thoughts.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">That fear of acting on my thoughts or implementing a solution allowed that voice of
doubt to just keep things the same.<span style="mso-spacerun: yes;"> </span>The voice told me that, “It will get better”,
or “This too shall pass”, but it hasn’t. It didn’t. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">I imagined myself in a dark room looking out into
the lighted abyss not knowing what or who was out there, feeling like I was being
interrogated, but not being able to see the face of the questioner. My own
voice saying, “He’s ok. This behavior happens but we’re used to it and I know
it will get better”.<span style="mso-spacerun: yes;"> </span>All the while, Joe
is telling us something….I NEED SOMETHING!<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Last week while I was at a Board Meeting for
Developmental FX, I had a few moments with Tracy and Mouse, so I mentioned the
challenge and the fact that we needed to do something and wondered if they had
any ideas.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Like a switch, Mouse says to me, “Oh, Cindi, you
know what to do!”<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">I paused and she paused, then I said, “Well, I was
thinking about a plan where I have Daniel drop Joe at the park and meet me,
then we both go for a long walk before we go home.”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Mouse replies, “Or, what about incorporating some
activity at the rec center as a part of his routine before he goes home?”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">The conversation continued for a few moments, but
these ideas resonated with me just like they had some 16 years before.<span style="mso-spacerun: yes;"> </span>“RIGHT!”, I thought….Joe still needs his
gross motor input so desperately that he’s exerting his energy when he comes
home!<span style="mso-spacerun: yes;"> </span>DING!<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">The following day, I sat with Daniel and Amanda
(Jake’s mentor) and we discussed things they could do on days when they are all
together as a foursome, and things just Daniel and Joe could do together.<span style="mso-spacerun: yes;"> We are so lucky that we have such caring people surrounding both of our guys, and knowing that we can trust them to do whatever is needed.</span><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><span style="mso-spacerun: yes;"><br /></span></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Yesterday was day 3 of this new plan, and boy-howdy
is it working! On day one, Joe was 25% better; day two, 50% better; day three,
75% better.<span style="mso-spacerun: yes;"> </span><o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><span style="mso-spacerun: yes;"><br /></span></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Out of this enlightening exercise, two things have
been real “Ah-ha” moments for me….<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">One: that voice of doubt has always been present and
will always be there to try and trick me into succumbing to fear instead of
action, but I will continue to strive to fight and persevere in the loving
interest of my biggest priority—my sons.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Number two: I am one of the luckiest people I know
having the resources I have and those who love us. Why don’t I take advantage
of those more often? Because it takes courage to ask for help. When I doubt my
own knowledge and ability, it helps to chat with someone close to me who can
remind me that I know what to do.<span style="mso-spacerun: yes;"> I realize the questioner in my imaginary, dark room was there all along offering their extended hand in aid.</span></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">I just needed the courage to fight and to ask my people to help me fight it.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<h4><div class="MsoNormal" style="font-weight: 400; line-height: normal; margin-bottom: 0in;"><span face=""calibri" , sans-serif" style="color: #26323e;"><span style="font-size: 18.6667px; letter-spacing: 0.533333px;">To learn more about Cindi Rogers and her book: Please click <a href="here: https://www.amazon.com/Becoming-Mrs-Rogers-Learning-Fragile-ebook/dp/B00NLY0V2E/ref=sr_1_1?crid=82YHDJXPP6VI&keywords=cindi+rogers+becoming&qid=1688422496&sprefix=cindi+rogers+becoming%2Caps%2C137&sr=8-1" target="_blank">"Becoming Mrs. Rogers-Learning to Live the Fragile X Way"</a></span></span></div><div><span face=""calibri" , sans-serif" style="color: #26323e;"><br /></span></div></h4>
</div>
<br />Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-18182189762822770812018-01-09T08:31:00.001-08:002018-01-09T08:49:07.525-08:00PLAYING HOPSCOTCH<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnp_PFxM18uzmD2uLFpBAqFAgO96mlYWqPnV5C0jZOcRksjvW28TYhedaptNVwCpbGo5JmCXtjXQLwdQY3uFZ-BMMdljTgwef1qrrJcMSk4pVwb9j3nVO3ZkrItuwwa68ANYoUI3FUzUI/s1600/hopscotch_drawing-13625.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="541" data-original-width="700" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnp_PFxM18uzmD2uLFpBAqFAgO96mlYWqPnV5C0jZOcRksjvW28TYhedaptNVwCpbGo5JmCXtjXQLwdQY3uFZ-BMMdljTgwef1qrrJcMSk4pVwb9j3nVO3ZkrItuwwa68ANYoUI3FUzUI/s320/hopscotch_drawing-13625.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I have five unfinished blogs on my desktop. Five! Each one started as a complex thought
with an ending in mind, but I could never complete the thought enough to
finish. Me. It’s like a profound mental
block preventing me from making that circular story fit together. Until
today. Today, I arrived at the reason
for my stumbling block, and it’s not a reason that I particularly want to
discuss…but I must. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">They say grief is a process. Who knew it would last
this long?<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">When my oldest beautiful baby boy was two years old
and just diagnosed with fragile X syndrome I grieved all of the things that I
imagined he would not be able to do in school or with friends. I was certain
those thoughts were the most devastating things a Mom could ever experience. They
ripped my heart out, stomped on it and put it back in my chest to heal.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">When our youngest was also diagnosed with fragile X
syndrome as an infant just a few months later, I again grieved the same things
for him. I also imagined as far as I
could what our life would look like with two sons with disabilities, although the
imagination can only take one so far. The grief was no less staggering and
debilitating.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">The real reality stared me right in the face on a
daily basis with delayed milestones, an absence of any verbalization and
behaviors that reminded me of our designated fate. All I wished for was some
kind of affirmation that everything would be ok.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">As years passed, I realized that all of those conjured
images were just thoughts, and that our sons could <i>do</i> things, and they could experience things, and we could have joy
as parents. We celebrated small moments of joy and “inch stones”, as my friend
Holly calls them. I exhaled a sigh of relief as we settled into some level of
normalcy. Of course, there were tough
times, no doubt, but we saw progress! This progress created little flickers of
light that kept me hanging on, hoping and striving for continued development. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">We saw our sons graduate! We never thought that would happen, but we
made it happen. It didn’t look exactly
like their peers, but because it was so hard-fought, we were elated at the
achievement…and <i>it was great</i>.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Grief reared its ugly head now and then through the
years, but subsided shortly after, leaving me with my perpetual sunny outlook.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Year after year, my imagination could not transport
me far enough into the future to see our sons as adults. Those were unimaginable
thoughts that frankly scared the shit out of me. I couldn’t possibly formulate clear,
realistic thoughts about what their “job lives” would look like, but suffice it
to say that I don’t think I ever could have imagined it looking as good as it
does now. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">My husband and I always dreamed our sons would have
a strong work ethic just the way we were raised, but that’s as far as my mind
could take it. I couldn’t fill in the specifics on what each of them would be
doing or how well they would do it. It
just wasn’t possible.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I am familiar with all of the phases of grief;
denial, anger, bargaining, depression and finally, acceptance. When the boys were little, I definitely
followed the path exactly as written. As
time passed, I found myself having little bouts of sadness or depression in
unexpected times, but again, I found my way out to land once again on acceptance. It felt like a game of hop-scotch; skipping
onto the block marked, “Acceptance”, only to be forced backward onto the
dreaded depression box when my turn came around. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">It’s literally been years since I’ve played that
ole’ game of hop-scotch, but as I pass yet another birthday, I find myself
joining in the game once again. Something as minute as age can certainly do
that to a person…or perhaps it’s more than that. Other things have stirred those old feelings
up…joyous things like weddings and babies. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Our sons have had some of the most amazing friends
through their school years and subsequently into adulthood. My husband and I, and the boys, have watched
each one of them move on to college, jobs, and now, the normal path of
engagements, weddings and now, babies.
We are elated at their joy and success and <i><b>we celebrate with them</b></i>….but
at the same time, I look around and see our life not changing and I am once
again hopping backward.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">This morning, my calendar glared at me with the
reminder that it was time to file the annual guardianship papers on one of the
boys—a task that I loathe, but at the same time, I am thankful to have as an
option. The forms beckoned me with questions like, “Who currently supervises
the Ward (my son) on a daily basis?” or “Please describe in details the current
mental condition of the ward.” On any
other given day I might just busily go about filling in the questions I am so
familiar with giving no regard to the emotional ramifications….but, today it
hit me hard. Another reminder of our path.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I needed a break from the paperwork so I dragged myself
into the shower, trying to take a deep breath and swallow away the lump in my
throat. I rotated the faucet and put my
face directly under the spray so that I could feel the hot rush of water run
over my head. It was peaceful and
soothing. I relished the solitude and
quiet. It gave me some time to gain
perspective on the feelings I was having.
I needed that. I find that perspective
is often my best teacher.</span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"> <o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I finished getting myself together and returned to
my computer to finish the dreaded chore that continued to beckon my
attention. There is no delaying the
chore since a delay would mean receiving a “nasty gram” from the court system
stating that I was tardy in submitting the form, and I didn’t ever want to be
late. It’s something I loathe more than the task itself.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I decided to take a
peek at Facebook as a momentary diversion to see what my friends were doing.
They had to be up to something better than I was, I told myself. As I quickly glanced through the news feed, I
came upon one of those memes that I typically scroll past, but this one caused
me to pause….then to think and reflect.</span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span>
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<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUEFAWRcKWtP-MZgJml8zARAD9Zzc62pnJDz1beMbCYFBYvOnPGAwfXISGPuJKmAoO4NCLfT4UXCdYu0K8H961sCV57icjtZ8PYPPIgK54GGOfu2y7kuuGXAPExCvnhDWeHJei4qPxN5o/s1600/Meme.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="632" data-original-width="466" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiUEFAWRcKWtP-MZgJml8zARAD9Zzc62pnJDz1beMbCYFBYvOnPGAwfXISGPuJKmAoO4NCLfT4UXCdYu0K8H961sCV57icjtZ8PYPPIgK54GGOfu2y7kuuGXAPExCvnhDWeHJei4qPxN5o/s400/Meme.jpg" width="293" /></a></div>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span>
<br />
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">This was just the perspective I needed at that
moment. Mind you, I am keenly aware that
my life is full of blessings. I am constantly thankful that my sons have taught
me lessons that I would surely never have learned had it not been for their
disability. I have a Saint for a husband that puts up with my every whim or
mood or ridiculous desire. I am capable of many things and have many friends that
love me. Every person has one challenge or another and mine is no more difficult.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 14pt;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , serif; font-size: 14pt;">I am reminded that </span><u style="font-family: "Times New Roman", serif; font-size: 14pt;"><i>no life is perfect</i></u><span style="font-family: "times new roman" , serif; font-size: 14pt;">, but that it’s
our response to those challenges that makes us the person that we are.</span><span style="font-family: "times new roman" , serif; font-size: 14pt;"> </span><span style="font-family: "times new roman" , serif; font-size: 14pt;">So, I will continue to do my part to make my
family’s life a series of experiences. I will strive to make memories to last
for whatever life we have left together. This shall be my path.</span></div>
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Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-52365039051434612492017-11-28T08:54:00.000-08:002017-11-30T08:25:01.401-08:00DO YOU BELIEVE IN MAGIC?<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbXuNyzp0LYb0meN44BRN7XxQ3Gx_V-k3zeoyI76siTD_T3ZzDXXRLuxHmiLOoyejKJ9v8ks28fw5nvlotRmEWOdz3jNyeyzunJZ8t8U8ERMeOBnzczoMgiVCTLXwKTCOd8PTUdNPTmFY/s1600/T%2526M.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="388" data-original-width="528" height="235" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjbXuNyzp0LYb0meN44BRN7XxQ3Gx_V-k3zeoyI76siTD_T3ZzDXXRLuxHmiLOoyejKJ9v8ks28fw5nvlotRmEWOdz3jNyeyzunJZ8t8U8ERMeOBnzczoMgiVCTLXwKTCOd8PTUdNPTmFY/s320/T%2526M.jpg" width="320" /></a></div>
<br />
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<span style="font-size: 14.0pt;">Magic
can come from many places.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">There
are days when I find it excruciatingly difficult, and it takes every single cell
in my body to conjure up the patience, to deal with my two adult sons, both born
with a developmental disability called Fragile X Syndrome. Today is one of those days. It momentarily feels like any
magic that was there is gone.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">At
26 years old, my youngest son has been my consummate teacher--my measurement of
personal growth. He has strong opinions
and shares those with me often, like today. Today, for some unknown reason, he
did not want to wear the clothes he had carefully picked out last night. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">Years
ago, I developed a method for the guys to pick out their clothing for the next
day the night before, mostly to save my own sanity in having to do it during
the morning rush. But, this morning, all bets were off. So, even though I was not
in the mood to deal with it, I pulled out my “ready-not-ready” card and waited.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">“Ready-not-ready”
is a method that two incredible women taught me years ago when things were at a
tipping point in our family’s life. My husband and I were on the brink of “Neverland”
as I like to say, meaning that we were at the point of never knowing what to do….<b><i>and
giving up</i></b>. We needed some kind of life preserver—literally. We had lost
hope and we needed someone to help us <b><i>restore that hope</i></b>.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">Today's blog is not about the "ready-not-ready" method, but about the people that made it possible. Thankfully,
we knew the right people for that job—Tracy Stackhouse and Sarah Scharfenaker,
or “Tracy and Mouse” as they are known in fragile X circles. They are never known independent of one another,
which is perfectly fine with me because together they are <i><b>MAGIC</b></i>. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">In
2003, they created an amazing non-profit organization called Developmental FX (<a href="http://www.developmentalfx.org/" target="_blank">developmentalfx.org</a>)
simply because they wanted to dedicate their lives to helping families, like
ours, all over the world with a wide range of therapeutic needs. Totally
logical since these ladies are considered world-wide experts in their fields of
OT and Speech Therapy. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">They’ve
spent the past almost 15 years building a team that has a strong base of
knowledge and that shares their philosophy about wrap-around services and a
combined approach to treating people. They built a clinic that is too
incredible to describe, but suffice it to say that it is magic to the little
people that experience it.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">Over
the many years that we have known these Magicians, I have also been the
privileged recipient of a wealth of knowledge bestowed upon me by them. This
knowledge has been nothing short of a miracle for me and my husband. Each and
every day we use one method or another to help us survive and get through each
day. Some days we are even a happy, seemingly typical family. Knowing <i>WHAT</i> to do gives a parent
the power to go on with hope and determination. This includes a method called “Ready-not-ready”.
It’s just one of the MANY methods and approaches that Tracy and Mouse taught us
to cope as parents, but also to help our sons in a way that is productive and
helpful.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">Developmental
FX has given us something that no other organization has given us—<i>HOPE</i>. <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">How
many organizations do you use every single day that give you that? Oh, there
are organizations that do a lot of good…but this one allows something no other
does…it gives you <i>tools to use every
single day</i>…..to survive.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">When
our sons were very young, there were days when I wanted to sit down in the
middle of the floor, cry, pound my fists to the floor and holler at anyone who
would listen about how tired I was…how sad I was….how I had nothing left to
give. But, that’s all changed.<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">Oh,
yes, I still have bad days—that’s only human. But, most of them are not because
I don’t know what to do to help my sons. Having the knowledge that Developmental
FX has given me empowers me to help them learn and grow and for us to function
as a family. <o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">Today
is Colorado Gives Day, and between now and December 5, 2017, I want to shout
from a mountain top, loud enough for everyone to hear about Developmental FX so
that folks will fund something special….something <b><i>MAGIC</i></b>. No matter where
you live, you can be a part of this! It’s for everyone, not just those in
Colorado! We want to see Tracy and Mouse and their team continue to help
thousands and thousands of other families all over the world just like ours…..<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">The
ones who struggle every day to find hope;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><span style="font-size: 14pt;">The
ones who have fought so hard but are "this close" </span></span><this close=""><this close=""><span style="font-size: 14.0pt;"><this close="" style="font-size: 14pt;">to giving up;<o:p></o:p></this></span></this></this></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">The
ones who live in countries where no one knows anything about fragile X
syndrome;<o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">The
ones with a newly diagnosed child that feel like the diagnosis will strip away
every ounce of determination they can muster.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">Click
here to go to Colorado Gives (<a href="https://www.coloradogives.org/DevelopmentalFX/overview" target="_blank">Colorado Gives Day</a>)<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">This
morning, I was knee-deep in a shallow pond of impatience…but two hours later, I
feel confident that I have the tools to go on another moment, another hour,
another day, another year with the power of knowledge that will guide me
forward. No day is perfect, but somehow I know I can go on. It’s all because of
two ladies who have shared their <b><i>MAGIC</i></b>.<o:p></o:p></span></div>
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<span style="font-size: 14.0pt;"><br /></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 14.0pt;">I
hope you will share this post so that others can experience the <b><i>MAGIC</i></b>
too.<o:p></o:p></span></div>
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<br /></div>
<br />
<div class="MsoNormal" style="line-height: normal;">
<span style="font-size: 10.0pt;">To
learn more about Cindi Rogers or her book “Becoming Mrs. Rogers-Learning to
Live the Fragile X Way”, please visit <a href="http://www.mrsrogersworld.com/" target="_blank">www.mrsrogersworld.com</a><o:p></o:p></span></div>
Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-57478534269364706842017-11-02T09:44:00.000-07:002017-11-02T10:06:19.229-07:00DAD IS KING<div class="MsoNormal">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh9Mdcb-dIKnhbvITMJAnxwp0DoVP53EmRPc7nqWFTnQh50i1GyLLXAD0dk4AGyiWxN_9Uhe6-SXW9wJNzGU8Gd2W9ZawsgkaxOyZf96zGNAQzvhOUyWZM8M8VQQT4iHEG7bx6piChwNA/s1600/10312502_10207041737664178_7014188901990955818_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="541" data-original-width="960" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjh9Mdcb-dIKnhbvITMJAnxwp0DoVP53EmRPc7nqWFTnQh50i1GyLLXAD0dk4AGyiWxN_9Uhe6-SXW9wJNzGU8Gd2W9ZawsgkaxOyZf96zGNAQzvhOUyWZM8M8VQQT4iHEG7bx6piChwNA/s320/10312502_10207041737664178_7014188901990955818_n.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">This morning, as I was assisting Joe, our youngest
son, with brushing his teeth, he looked up in his usual way to avoid toothpaste
running down his face, and concurrently reached his left hand into the right
pocket of my bathrobe, knowing my cell phone would be there. Joe suffers from serious phone envy, and
often snatches mine away, then giggles like he’s done it inconspicuously. He gently
slides the phone out of my pocket and places the sleeping, dark-screened cell
phone to my ear. He loves to emulate
making a call--knowing it can often reap the result he desires. He generally wants to call someone, even
though in real life he has never even dialed a phone or had a full on
conversation, except with his Dad, and only on the speaker phone. Sometimes he
wants me to call his favorite restaurant, Chili’s, and pretend to
place a to-go order. Sometimes he wants me to call the library and request his
favorite book. But, most of the time, he wants to pretend call his Dad. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Joe’s Dad is the world to him—you might even call
him a “Daddy’s boy”. He and Dad are like two-peas-in-a-pod. But, this week, Dad
is working out of town, so Joe knows we need to call him in order to talk to
him. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I ask my usual question in this situation, “Who
should we call, Joe?”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">With a mouth full of toothpaste he still manages to
answer in a mumble, “Dad”. It sounds more like, “Daa”.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I reply with the phone to my ear, “What should we
tell Dad?” trying my best to distract him from one of the most sensory-defensive
activities that exists in his day, even though he’s 26 years old.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Joe doesn’t miss a beat and manages to gurgle, “Is
King”.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Me, not completely understanding this newly
developed phrase, I ask, “Is Dad King?”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Joe says, “Yeah…!” with a strong sense of
enthusiasm.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">We finish brushing, rinse, spit and wipe his mouth.
I reclaim my cell phone, place it back in my pocket and shift Joe toward his
hoodie to complete his ablutions for the days’ work ahead. Then, my mind shifts
back to a much more chaotic, stressful, sad time some 15 years ago.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Fifteen years ago, Joe was only 11 years old. Of our two sons, he has most definitely been
the one that has taught us the critical lessons of parenting a child born with
Fragile X Syndrome <a href="http://www.fragilex.org/" target="_blank">(www.fragilex.org)</a>, some of which are patience, determination and, the most
difficult, a sense of calm. Fifteen years ago, my husband, Chris, and I were
knee-deep in a world of hopelessness, frustration, sadness and despair. Joe was testing every cell in our bodies as
parents, as humans and as a married couple.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Sometimes with a child who is severely affected by
Fragile X Syndrome, there are behaviors involved, extreme behaviors. Jake, our oldest son, now 28, has never had
many of these behaviors, so this gives us a sense of perspective on the genetic
disposition. But, Joe had the full gamut
back then. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">From the time Joe was born, he cried, whimpered and
expressed his disdain for many things in a variety of ways. Suffice it to say
that Chris and I have learned a mountain of methods and approaches to help Joe
and, in turn, help us cope and eventually live our day-to-day lives in a
semi-peaceful state. It’s taken years and years of blood, sweat and tears to
get where we are now. If you want to
read about the details, you can always read, <u>Becoming Mrs. Rogers</u>, <a href="https://www.amazon.com/Becoming-Mrs-Rogers-Cindi/dp/1497373409/ref=sr_1_1?ie=UTF8&qid=1509639539&sr=8-1&keywords=cindi+rogers&dpID=51Gct6X9geL&preST=_SY344_BO1,204,203,200_QL70_&dpSrc=srch" target="_blank">(Buy Becoming Mrs-Rogers by clicking here)</a> my
memoir about our life. All of the sometimes gory details are there for you to
enjoy.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">The book also details the amazing people that took
us under their Angel wings and taught us how to live and how to help Joe, and
subsequently, Jake. Each process was
trial and error, as there are no perfect answers. Eventually, after years of successes and
failures, we honed our approach, and added some techniques of our own. There is one very effective method that I did
not include in the book. I simply couldn’t
find the words to describe this method in such a way that I thought it would be
void of judgement or reproach from the reader…and I am still not sure. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Until you have a child with severe needs, you will
never know how desperate you might become. You hold your newborn, innocent,
warm, beautiful baby in your arms with a feeling of hope and joy and love. And
then, you receive a devastating diagnosis that crushes every single joyful
thought you ever had and your direction drastically shifts to desperation. You
would do anything to make their world better.
It is utterly the most brutal and devastating news you will ever hear.
You attempt to take in a breath, but no air will come. Your body is devoid of
life for a split second….until you realize you must gasp even if it causes
uncontrollable tears to fester.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">So, we did take in deep breathes, day after day
after day. We learned and listened and tried. Chris and I tugged and pulled at
each other, and eventually, embraced our fate. It was never easy and still isn’t. Especially for a Dad. He’s an amazing Dad
that works his tail off every single day to provide for us. He works at a very
physical job, but still finds energy to give us, and especially Joe. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">As we were still in the phase of trying to find
every possible means by which to make Joe’s world more manageable, and learn
ways to help him cope and exist in our world, we also discovered something
bigger than we ever expected. An unconventional way to help build trust and
help Joe physically at the same time.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">One day all those years ago, Chris came to me and
asked if I ever thought about the physical discomfort that our boys must feel
due to the extreme stress they experienced from the world around them? I said,
yes, I did, but there did not seem to be any clear symptoms. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I often had some pretty intense aches and pains due
to the physical stress that my body endured while caring for these two big
guys. Nothing felt better than a white-knuckle neck and shoulder rub to ease
the piercing pain from a knot in my shoulder blade. My favorite "rubber" was
Chris because he had such strong hands. I never seemed to give him as good a
rub as he gave me because my hands didn’t have the same strength.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Chris said he wondered if, as tense as Joe was on a
typical day, he would tolerate a back rub to help him relax and relieve some of
that tension. I questioned whether he would even let Chris touch him for more
than 60 seconds…he loved his Dad more than anyone, but touching his back, I
doubted.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">That night, after Joe had had his hot shower, he and
Chris came downstairs where I had laid out one of my exercise mats on the floor
in front of the television. Chris had waited to help Joe put his shirt on in
hopes of postponing until after the trial rub. Joe was outwardly confused. I
suggested he lie down on the mat, an act that was totally out of our newly
established routine, causing some verbal backlash from Joe. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Chris talked calmly, something we had both been
working on, as it didn’t come naturally to either of us. He asked Joe to lie
down again, saying that, “Dad is going to help you”. After a few more words of
gentle coaxing, Joe did finally lie down on the mat. Our usual “Jeopardy”
programming played on the television as Chris took a moment to warm up his
hands. I could see a bit of hesitation in this
masculine-and-completely-homophobic man that I loved. This was NOT something he
was used to or familiar with….ever. I
sensed his inner struggle between being a “man” (and men don’t touch men in his
mind), and desperately wanting to help his son…no matter how much it cost him.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Chris placed both hands firmly and silently on Joe’s
back. Joe lifted his head a bit not knowing exactly what was going to happen. It
was difficult to watch as a Mom and the nurturer in the family. I don’t think
anyone in the room was really breathing at all.
Joe relinquished a bit and sunk into the mat a little at a time. We all
blew out our breath.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Chris began to rub with guarded pressure at first,
and increased it bit by bit. After a short 60 seconds or so, Joe was unable to
tolerate the situation, and sat up like a shot. Chris helped him with his shirt
on and Joe made his way to his usual spot on the couch, readying himself for
his weighted blanket. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">The whole 60 second experience was a success in several
small ways. Joe now knew what the words, “Dad is going to help you” meant, and
he tolerated something new and extremely difficult for his body. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Dad had some pretty huge accomplishments that night,
too. He did something completely out of his comfort zone, and he gained an
incredible amount of trust from his son that no one else on earth had. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">We continued this exercise every night for
God-only-knows how long. At least until a point where Joe would actually gain
some physical benefits from a back rub. Chris talked to him in a calm voice
throughout each massage, and felt many knots that often took time to relax. It
even got to the point where Joe would close his eyes and melt into the mat
until he was almost asleep—a monumental achievement compared to that first
time.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Over the years, we have shifted methods and
approaches, finding some had long-lasting effects that didn’t require ongoing
use, like this one; and others that we still use every day. But, these boys
continue to surprise us every single day.<o:p></o:p></span></div>
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Just last week, I was traveling and Chris was home
with the guys by himself. He told me about something that nearly brought me to
tears. The reason is because it shows how incredibly far-reaching some things
can be, and how far our guys have come. <o:p></o:p></span></div>
<div class="MsoNormal">
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">On this afternoon, Joe comes into our bedroom where
Chris is changing clothes. In order to fully understand the depth of our world,
you must know that Joe is capable of speaking about 100 words, and most days it’s much
less. Anyway….Joe had seemed a bit restless on this day, according to Chris. He
seemed to want to say something but it seemed he could not find a way to muster
the words.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Joe bounds onto our bed and sits cross-legged. This
in itself is not unusual, but Chris sensed he needed something. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Chris says, “Joe, do you want something?”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Joe says, “Yeah!!” with a certain amount of decisive
exclamation.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">In an unusual act, Joe reaches for Dad’s pillow,
places it at the foot of the bed, and lies down on his stomach!</span></div>
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<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Chris not
believing what he was seeing, was dumbfounded and speechless for just a split
second until he said, “Joe, do you want a backrub????”<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Joe exclaims, “Yes!” <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">A chuckling, open-mouthed, stunned Chris says, “OK!”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">This HAD NEVER happened. Not only that, but it is rare, and I mean rare,
that our guys will even tell us what they <i>need!</i> <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Chris warmed up his hands, and even though he was
tired from a full day or household chores, he relaxed and gave his son what he
needed. He gave his son something that was incredibly difficult for him to give
one day a long time ago, but which now is just a part of his life. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">This is why, in Joe’s eyes, his <b><i>Dad is King</i></b>.<o:p></o:p></span></div>
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</div>
<br />
<div style="-webkit-text-stroke-width: 0px; color: black; font-family: "Times New Roman"; font-size: medium; font-style: normal; font-variant-caps: normal; font-variant-ligatures: normal; font-weight: normal; letter-spacing: normal; margin: 0px; orphans: 2; text-align: start; text-decoration-color: initial; text-decoration-style: initial; text-indent: 0px; text-transform: none; white-space: normal; widows: 2; word-spacing: 0px;">
<i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i></div>
</div>
Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-21364744068595089932017-10-30T11:41:00.000-07:002017-10-30T16:27:43.084-07:00I'm Finding It Difficult to Cope<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgdmUANQwWItQj1RlFRcfhJkRyMNhbRv1sctlXC1VUP2DT6h9eD8akr_Ts_Kc-S2INAhRA_zU8WQJTKeyDWQ1dNRMWhR1ZRIbzYowWUIMtDarDKSZ5tIUt9J9yiKTQ-i0Za9XWISxX1mA/s1600/Dear-Future-I-worked-hard-and-made-sacrifices-to-equip-my-children-for-you.-intelligentdomestications.com_.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgdmUANQwWItQj1RlFRcfhJkRyMNhbRv1sctlXC1VUP2DT6h9eD8akr_Ts_Kc-S2INAhRA_zU8WQJTKeyDWQ1dNRMWhR1ZRIbzYowWUIMtDarDKSZ5tIUt9J9yiKTQ-i0Za9XWISxX1mA/s320/Dear-Future-I-worked-hard-and-made-sacrifices-to-equip-my-children-for-you.-intelligentdomestications.com_.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Last night, the boys and I retired to the basement
for our evening routine. After we were fully settled with our cozy blankets, remote and snack, I
realized that I had left my cell phone upstairs. For just a moment, I
considered unfurling from the blanket just to retrieve it, but decided against
it. It wasn’t the first time this had happened…and, somehow I survived. We
enjoyed watching some football, then Charlie Brown before the guys were ready
for bed. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I got them all tucked in, and returned to my
hopefully-still-warm spot to shift to “This is Us” and some quiet moments to
myself. Dang it! I, again, left my phone
upstairs. I paused the program,
unfurled, and retrieved it. As I browsed
the home screen I realized that nothing earth-shattering had happened. No one needed me. I survived. This was all ok. This has been my
coping mechanism for several months now.
No overwhelm by the likes of technology.
Very little by way of Facebook or Twitter.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Technology is one thing as I age that I have
difficulty coping with, so I’ve decided to take it in regulated doses. Just for grins, I’ve dedicated myself to
trying to talk to friends on the telephone (yes! LIVE!) once a week. Yes, I still text, but, I need some
connection to people’s voices. With all of the "social" media, there can be a real lack of human contact! In fact,
I predict there will soon be a severe shortage of oxytocin, the chemical
released in our bodies when we receive a hug.
I refuse to be a part of that world!
I NEED hugs!! <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I’m so thankful that I was born with, or learned some
coping skills that help me every day.
They come in all different ways and means.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">When I was a little girl, maybe 4 or 5 years old, there
were rare times when I would get into trouble for one thing or another.
Discipline would be issued; a swift spanking followed by alligator tears, then
I would be condemned to my room where I was told to “think about what I had
done”. I would lie on my bed, hands crossed underneath my head, and think about
what every other person in the world must be doing…while I was suffering what I
was sure was the worst and saddest time ever in my life to that point. I
imagined that other kids were out-of-doors playing games or riding their bikes.
I imagined that people were laughing and going about their happy lives while I
was suffering a fate <i>no one else on earth
could possibly be facing</i>…alone. I
had no intention of thinking about what I had done wrong. I preferred to think
about how awful I had it while every other single person on the planet had
happiness. Silly, I know, but this kind
of thought process, I believe, was my own way of coping. It helped me get
through those few hours until I was released once again to play another day.
Not bad coping skills for a 5-year-old!<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">As I’ve grown and new experiences have come my way,
I’ve had to adapt and learn how to cope with both good and bad. I suspect most human beings have similar
situations. But, now I find myself in the midst of what I call the AGE GAP! This
will require some extra refined coping skills. So many things to cope with.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">The Age Gap seems like it crept up on me without any
notice. It’s like this physical place
between the future and the past. When
one tugs at me the other relinquishes, and visa-versa. I’m developing ever-new ways of coping with this one.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">According to some news reports, it seems that
human-kind is obsessed with erasing the facts of the past and creating a new
narrative. Mind you, there are lots of
parts of my past that I wish I could erase, but on the other hand, I find it
difficult to find time to even dedicate to those issues that I cannot change. So,
I cope by ignoring. One decided thing I did to help was to “cut the cable cord”
back in February. Believe it or not, it
was easier than I thought it would be! Even my two routine-oriented sons have
not missed it one bit! Here I was
thinking we would keep it for them! Boy,
was I wrong! Life goes on without a constant sound of cable news in the
background. I’m pretty sure someone will let me know if the day of my birth is
erased. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Despite all my efforts, another issue of future
events constantly invades my day-to-day, forcing me to pull out every coping
skill I have to muster……holidays. The
onslaught of Christmas regalia in September causes a whole new group of problems
to arise in my household. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I have two amazing sons that both happened to be
born with a genetic developmental disability called Fragile X Syndrome. They’re adults now, so we’ve been around the
block more than a few times, but holidays fester up some of the old
challenges. Christmas can have its own
set of challenges for our guys; what gifts to buy someone with limited interests
and still make it fun; how to incorporate so many new and unfamiliar things and
situations into the already-established routine; arming them with coping skills
while everyone around them is stressed out and excited; how to help them cope
with all of these things while still coping ourselves. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Besides all of that, they
both work at retail establishments so you can guess what happens with regard to
holidays in those environments….yep!
Stuff, stuff and more stuff. Once
the summertime paraphernalia has been clearanced, they make way for holiday
garb. Don’t get me wrong…I’m not
anti-holiday. I’m just pro-timely
holiday stuff. This challenge brings
forth a whole new approach to coping for my husband and I. Without good coping
skills we would surely be admitted to a mental hospital.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">As a matter of routine, both boys have learned that
once Halloween is over it must mean that we skip directly into Christmas. Thanksgiving is just a dinner in their mind--nothing
to really look forward to. I get it that
kids love Christmas. I get it that most
of society spends a huge majority of their year preparing for one single day,
or two single days…..I just can’t spend 1/3 of the year hearing about it! Even though our sons are verbally limited to
a mere estimated 100 words, “Christmas” is certainly one of them. Constantly.
One of them. Repeat. My husband,
Chris and I have become totally unconventional when it comes to Christmas in an
effort to keep ourselves at some level of sane.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Last year, by the time we got to December 1<sup>st</sup>,
our oldest was beyond his ability to really cope with the anxiety associated
with such an exciting upcoming event. I
did everything I knew how to do; I prepared visual calendars exposing only one
week at a time in order to try and help him slow down time; we waited to put up
the tree until after December 1<sup>st</sup>, when normally I would put it up
Thanksgiving weekend. Nothing seemed to help.
Both guys were losing sleep over it which meant Chris and I were losing
sleep over it, too. We could not slow
down time enough. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">In some ways, it’s a blessing that our two sons are
on the severe spectrum when it comes to Fragile X Syndome (<a href="http://www.fragilex.org/">www.fragilex.org</a>) because this allows us to “manipulate”
events. So, that’s what I did. I created a new calendar showing that
Christmas would take place one week early.
We had to get it over with. Then,
we booked a week away in the mountains during Christmas week to enjoy some down
time. I know…..I know….the religious day
and all…..but, for us, we had to help our sons.
They do not understand all of that, but they do understand the word “Christmas”
and know that a lot of excitement correlates with that word. It was glorious and
relaxing.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">The regalia has already begun in stores as expected
and so has the verbal perseveration over “treats” (tomorrow, thank God). Our
coping has already begun, too. I’ve
booked the same week away and we look forward to it.
This year I plan to put it on the visual calendar once December rolls around.
My favorite holiday is Thanksgiving, so I’ll cope by savoring a long weekend
and time spent in the kitchen. We even
expect some family to come by, so this will add to the festivities. I cannot change the course of events as they
happen in society, but I will do my best to pull out all of the coping skills
and hopefully, enjoy some small moments of joy as we go along. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">The coping also continues just about every day as
Chris and I endure the Age Gap, especially when it comes to retirement. This is
a tough subject to even write about…believe me. There is nothing good that comes from aging when you have kids with disabilities. We are rounding the corner and are within 10 years of that event. Some of our friends have already retired. Having
two sons that will always need supervision, with or without us, is a
gut-wrenching fact. Unlike many of our friends, we have special circumstances
that will surely take our retirement on a different course than any of them. The
anxiety that this produces is more than I can even think about in one sitting.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I’ve written in much detail about our plans for our
sons in my book “Becoming Mrs. Rogers”, so I won’t rehash that. The fact still
remains that we continue to age and the transition grows closer and
closer. It's a' comin'! Our priority list grows longer
and longer. It’s times like these that I feel extremely blessed that I’ve learned
how to cope with such a monumental task. I have a very organized mindset. Chris
and I still have the physical-ability to work, and boy, do we work. We have the
means by which to <b><i>do</i></b> something. So, we
will continue to put one foot in front of the other. We will continue to think about the end goal
and hope that we can achieve each step on the journey that lies before us. This
one thing will be more and more of a priority for us as time goes by. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Somehow in all of this chaos and coping, I hope we can
enjoy each day and relish our time with friends and family. I think we can. We are here right now….right
this minute….we just need open our eyes to see the small moments of joy.<o:p></o:p></span></div>
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<br /></div>
<i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i><br />
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Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-46916156920763950122017-07-25T15:09:00.002-07:002023-07-03T19:54:46.943-07:00Imperfect Hope-Living with Fragile X Syndrome<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">July is National Fragile X Awareness Month…..and
there are a lot of things that you will NOT learn about Fragile X Syndrome by
looking at the web, Facebook or Twitter.
To learn the real facts about it, go to the website </span><span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><a href="http://www.fragilex.org/">www.fragilex.org</a>. That's what this month is all about...learning something you may not have known before.</span><span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Hope is not a word that my husband, Chris and I say
with casual disregard.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">I clearly remember the day we got the diagnosis of
Fragile X Syndrome for our oldest son, then 2, and the subsequent same
diagnosis for our youngest. All hopes that my husband and I had for a fairytale
future went out the window.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">In the early years, we both walked with a permanent
bend in our spines as we practiced walking our son; our hands in his
little hands held over his head, holding his little body erect, hoping he would take his first
steps at the prescribed age of 12 months. The long awaited moment gradually
came at the age of 17 months, long after his "typical" peers.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Symptomatic of fragile X are the speech delays. I
prayed, wished and hoped with all my might for words to spill out of my
determined son’s mouth. I longed for him to utter the words, “I love you Mommy”,
or “Mama”, or something……anything.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">There were daily, physically exhausting elements of
fragile X that beckoned every ounce of determination and patience in us—7 long years
of sleeplessness; 10 years of insurmountable potty training…we thought, all
testing how much we loved our sons.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJtS_QO1Od2EWdj8Rhgo1qhd0B90gB49n536CIbSMOK07ZgbpLE6P7vaL3wjCEfpB_RWLcbkGbusWqeCezBHChc1U0iQN1khHZ4nBnhoh1tVMmeaN8ieSA-f4bAZHVWml1TaAaOw5eKzo/s1600/Joe+on+toilet.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJtS_QO1Od2EWdj8Rhgo1qhd0B90gB49n536CIbSMOK07ZgbpLE6P7vaL3wjCEfpB_RWLcbkGbusWqeCezBHChc1U0iQN1khHZ4nBnhoh1tVMmeaN8ieSA-f4bAZHVWml1TaAaOw5eKzo/s320/Joe+on+toilet.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The beginning of the dreaded potty training</td></tr>
</tbody></table>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">As the neighborhood kids rode their bikes up and
down our street, our youngest, Joe, watched with curiosity from the window. I saw
the hope and excitement in his eyes while my heart tore into a million pieces,
knowing his fragile motor skills would not cooperate with such lofty goals. Later
that year, we bought him a bike with training wheels, assisting him until our
backs arched in a semi-permanent state from “side-steering”. The very day he finally
learned to pedal that bike years later, a tear welled up in my eye as I saw one
of those kids drive past. Joe never really learned to ride that bike
independently.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWEb4pn596UB0j8cQy7xTRD-cXPuiEbqbEmNpyP_RLOxYQPS4GM0jVhkQYYLWWHT70rMqQhKsc1ePWPxHP6bYLzFvwqkz3L1tGXxzMrmJeLjilH00UUYl4HEFr47UV7ouqit6ZH5msjzs/s1600/Joe+on+bike.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWEb4pn596UB0j8cQy7xTRD-cXPuiEbqbEmNpyP_RLOxYQPS4GM0jVhkQYYLWWHT70rMqQhKsc1ePWPxHP6bYLzFvwqkz3L1tGXxzMrmJeLjilH00UUYl4HEFr47UV7ouqit6ZH5msjzs/s320/Joe+on+bike.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of the first moments of Joe on his new bike--standing still.</td></tr>
</tbody></table>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Little league sports were everywhere as the years
passed and our two sons grew. We were on a course of therapeutic swinging and
deep pressure in and attempt to calm and gain some semblance of focus. Bouncing
a ball was out of the question.
Following rules and directions were not words in our vocabulary. Hope
had disappeared it seemed.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">The very idea that our sons were going to someday be
adults….without us……kept us awake at night, and worried during the day. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Our boys continued to grow and develop and learn and
love.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Their parents continued to grow and learn and
acquire acceptance.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">And then they <i>did</i>
become adults. All of the distant worries and faded hopes disappeared. Our sons
were still grown. In fact, they grew into happy, productive citizens of their
community, just the way our modified plan exclaimed. There is no cure for
Fragile X Syndrome—it’s a lifelong diagnosis—nothing has changed in that
regard. But, our view of hope has changed.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Looking back, I realize that hope was with us all
along. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">When the words spilled out of the Doctor’s mouth,
she was right there with us providing support.
She offered us resources, and help and hope.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">When Jake finally said his first word at the age of
6, we knew why and how because a very special Speech Therapist and Occupational
Therapist (OT) had taught us. As Angels
do, they took Jake under their wing and helped him, step-by-step, bit-by-bit,
giving us more hope.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">With each improved motor skill like pedaling a bike,
or bouncing a ball, or simply learning to regulate their bodies, hope was always
all around us. Kids from, what seemed like out-of-nowhere, appeared to guide
our sons to love basketball and baseball….and offer friendship. Tiny baby steps
of improvement were there—we just had to adjust our eyes to see them.<o:p></o:p></span><br />
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<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjvSZvBOEhQmPLjg0pmL27Il0UxyUHY4jN2FlgbAmgtUFFvKc2dgSokcRBaet6dqmSPPpJtxEFnQ_5Iw3O27PejWS3fRFnEzXrJpogwW0i9zc_qsfK60p4f14vVbVRtGpEglWqPVR9XrY/s1600/10842296_10206102339819819_9024828125018638922_o.jpg" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjvSZvBOEhQmPLjg0pmL27Il0UxyUHY4jN2FlgbAmgtUFFvKc2dgSokcRBaet6dqmSPPpJtxEFnQ_5Iw3O27PejWS3fRFnEzXrJpogwW0i9zc_qsfK60p4f14vVbVRtGpEglWqPVR9XrY/s320/10842296_10206102339819819_9024828125018638922_o.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jake with his friend, Daniel, who guided him in basketball for years.</td></tr>
</tbody></table>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Other “Angels” like Teachers, Para’s and friends
provided sprinkles of hope, day after day, year after year.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">We are far from finished with daily challenges, but
we have knowledge and resources. We have hope each day—imperfect hope—a hope
that allows us to continue moving forward, knowing that it can and will get
better. Since that dark day 28 years
ago, life is so much better than we ever imagined it could be.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">We have built a wonderful, caring world around our
sons with friends and neighbors; family and professionals; all working with and
loving them. No, they will never love
our sons the way we do--but, that’s how our imperfect hope works.<o:p></o:p></span></div>
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Now, here we are in the land of grown up, dependent
children—the unknown future--wondering if our sons’ futures will evolve to be
what we envision. We’ve already learned that any attempt at a perfect hope was
a dream derived from convention. For me to have wished that Jake would come
right out and suddenly say, “I love you Mommy” was not realistic. What DID
happen was perfect for him……a miracle for me.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">I submit that if I had a nickel for every moment I
wasted on worry and despair, I would be wealthy. Most things I worried about
turned out in the end. So, now should I revert to that old routine after all of
these years of learning? Worry about
things that I <i>can</i> do something about?
Worry about things that those consummate Angels will help us with?<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">Chris and I cannot predict the future—no one can.
Looking back at all of these moments when we questioned hope, and later, clearly
saw the positive outcomes, has helped us see a continuous flow of hope. It
gives us precious perspective that we need to carry us through the tough days
still yet to come. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;">For those families that are just beginning their
journey, I want you to know that THERE IS ALWAYS ROOM FOR HOPE. It’s there…..you just have to open yourself
up to see it clearly.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span>
<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPxXUQQkewHLsJCDzoKm9kQNdQCdaFBAWn1kJsTr0iNkJajt8WXy1Ps-gzAovgmfPrDtn27TsMElaLd7QVxnvGTKQ5JQE-3qzNLn6oq-uoewnbEMU9zwNRnmtRAnBQE-r9pIKBZHlwsO0/s1600/10957188_10206560139744531_3349981303879313163_o.jpg" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1353" data-original-width="1600" height="270" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPxXUQQkewHLsJCDzoKm9kQNdQCdaFBAWn1kJsTr0iNkJajt8WXy1Ps-gzAovgmfPrDtn27TsMElaLd7QVxnvGTKQ5JQE-3qzNLn6oq-uoewnbEMU9zwNRnmtRAnBQE-r9pIKBZHlwsO0/s320/10957188_10206560139744531_3349981303879313163_o.jpg" width="320" /></a></div>
</div><div class="MsoNormal"><br /></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14pt; line-height: 115%;"><br /></span><span style="color: #26323e; font-size: 18.6667px; letter-spacing: 0.533333px;">To learn more about Cindi Rogers and her book: Please click </span><a href="here: https://www.amazon.com/Becoming-Mrs-Rogers-Learning-Fragile-ebook/dp/B00NLY0V2E/ref=sr_1_1?crid=82YHDJXPP6VI&keywords=cindi+rogers+becoming&qid=1688422496&sprefix=cindi+rogers+becoming%2Caps%2C137&sr=8-1" style="font-size: 18.6667px; letter-spacing: 0.533333px;" target="_blank">"Becoming Mrs. Rogers-Learning to Live the Fragile X Way"</a></div>
Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com8tag:blogger.com,1999:blog-6537170817799988298.post-22901952740283016812017-07-11T09:33:00.000-07:002017-07-11T09:33:30.921-07:00The Major Issue with Fragile X Syndrome No One Seems to Talk About<div class="MsoNormal">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%;">July is </span><b><span style="color: #4f6228; font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #4F6228; mso-style-textfill-fill-colortransforms: lumm=50000; mso-style-textfill-fill-themecolor: accent3; mso-themecolor: accent3; mso-themeshade: 128;">National Fragile X
Awareness Month</span></b><span style="font-family: "Times New Roman", serif; font-size: 14pt; line-height: 115%;">…..and
there is one major thing you will NOT learn about Fragile X Syndrome by looking
at posted facts on Facebook or Twitter. For
all of the scientific facts or to learn more about fragile X syndrome, please
take a moment to go to </span><span style="font-family: "Times New Roman", serif; font-size: 14pt; line-height: 115%;"><a href="http://www.fragilex.org/" target="_blank">www.fragilex.org</a></span><span style="font-family: "Times New Roman", serif; font-size: 14pt; line-height: 115%;">.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWmE6jeGocHqb8HIVvHA9WNebqh7RzhxERubG4s1hAwoMt3pSwPOo8KdamWRMmfidSp6rciiaDhB7OuAKusWrghRq5xi_JovNBKSPfMSOpthGYlVjJISCKsu9AaMAFWbZLwbefKFnsWr4/s1600/FXAWA.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="495" data-original-width="495" height="200" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWmE6jeGocHqb8HIVvHA9WNebqh7RzhxERubG4s1hAwoMt3pSwPOo8KdamWRMmfidSp6rciiaDhB7OuAKusWrghRq5xi_JovNBKSPfMSOpthGYlVjJISCKsu9AaMAFWbZLwbefKFnsWr4/s200/FXAWA.jpg" width="200" /></a></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">In
my one-and-one-half hour drive to work this morning, I was able to fully
contemplate every aspect of the subject matter for this blog. I mulled over the many chapters of my life and
how it relates to the one thing that no one seems to talk about when it comes
to fragile X syndrome—</span><b><u><span style="font-family: "Times New Roman","serif"; font-size: 14.0pt; line-height: 115%; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: Calibri; mso-fareast-language: EN-US; mso-fareast-theme-font: minor-latin;">marriage</span></u></b><span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">In
1985, when Chris and I made our way down the perfectly groomed path of his
parent’s back yard to recite our nuptials, I somehow doubt that any one of the
more than 100 friends and family gathered were wagering on whether or not we
would have a son or daughter affected by a genetic anomaly called Fragile X
Syndrome. How could they? No one had even heard of it back then!<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">As
Newlyweds, all we thought or talked about were goals, dreams and predictable
difficulties yet to come. We shared thoughts on future disciplinary methods for
children yet to come, what would bring each of us joy, financial goals,
work/job goals, what we envisioned our future to look like and a thousand other
things. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">Five
years later, as we both looked down into the angelic eyes of our first-born son,
we still had no clue what we were in for. We shed tears of joy over his arrival
and reflected deeply into the bright future that our progeny presented. We
dotted over his every move and milestone, until those milestones were delayed
and delayed, causing his worried parents to sink into an unfamiliar life of
question and uncertainty.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">Twenty-six
months later, our second son was laid in my arms, and again, I wept tears of
joy, but also tears of concern. I passed the little, warm, innocent creature to
Chris, and watched as small wisps of fear appeared in the worry lines of his face.
Virtually days later, our entire existence would change. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">We
heard those hallowed words “both of your beautiful boys have a genetic
developmental disability called Fragile X Syndrome”…..and there was <i>NOTHING</i> we could do about it. There was no cure. Our married life had shifted into a whole new
dimension with this news. We were forced
to question every fundamental moral and life value that we had previously laid
out. <o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">One
new assignment was laid in our laps right away.
We had to learn how to <i>cope</i> while learning how to <i>grieve</i>. It was immediately obvious that I would grieve
at a different pace and in a different way than the one person that I thought I
knew better than anyone. I grappled for
information and asked questions while Chris stayed silent, taking in the
realities. We had to figure out how to keep it together for the boys, but still
support each other, even though we were in totally different places emotionally.
The reality that very precise, minute, little dreams were dying one-by-one
before our eyes, made the task even more daunting. How could we possibly overcome so much
devastation and do it together….and stay together?<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">For
the first four years or so, we merely existed, not comprehending the extent of
the implications some microscopic gene would play in our life. I found myself
crying over small things, but didn’t always understand what I was crying about.
Chris stayed strong and upright, but inside he was angry. Over the years, we
each did progress through the entire grieving process at our own pace, doing
our best to support one another. How we did it, I am not completely clear on,
but I think a strong love surely helped.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">I
cannot put my finger on any specific reason that we’ve made it 32 years. I can
point to some coping skills that we’ve eased into naturally, as well as some
things that I, personally, would attribute to our wedded longevity. We, of course, are not perfect, just like all
couples. We have good days and bad…but more good as the years go by. We have squabbles, compromises and
miscommunications just like everyone else.
But learning each other’s rhythms has certainly added to a positive
day-to-day life.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">It
can’t hurt that we met each other in Mrs. Johnson’s 7<sup>th</sup> grade French
class (for full details on that story, click here <a href="https://mrsrogersfxneighborhood.blogspot.com/2014/08/the-lost-chapter.html" target="_blank">The Lost Chapter</a>). Having 8 years to get to know one another
before we were married didn’t hurt. By the time we got married, we really knew
each other pretty well! Now, we own and run a company together! Yes, we see
each other every day and work together, too!<o:p></o:p></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiftkM-vKMndKHm6X1_COs2-LpKxeUOVZKE6JQZn2mbQoOE-OXvOwzqqRMSmGz851aiFWzL3dfyMFvGmweYQvNZNYkMRYMtLxuLAukw8ZHLPR2M8fDXysd_jop9xFOOYkONyvW2mU3pbNY/s1600/c+and+c+on+job+site.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="528" data-original-width="960" height="176" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiftkM-vKMndKHm6X1_COs2-LpKxeUOVZKE6JQZn2mbQoOE-OXvOwzqqRMSmGz851aiFWzL3dfyMFvGmweYQvNZNYkMRYMtLxuLAukw8ZHLPR2M8fDXysd_jop9xFOOYkONyvW2mU3pbNY/s320/c+and+c+on+job+site.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On the jobsite (on our Anniversary no less!) as we<br />run our commercial plumbing company together.</td></tr>
</tbody></table>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">I
have to say that one thing rings pretty clear when it comes to our happiness as
a family despite fragile X….finding small moments of joy can carry us through
those tough spots. Once we learned how
to see these small moments of joy, we all woke up and were able to see the
blessings instead of the sorrow, the devastation, the sadness. Small moments of joy can be found in the
strangest places.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">Sometimes,
during a rough patch, I’ll head into my peaceful place….my kitchen. I find that
doing some mindless chopping or stirring or measuring brings me back to an even
keel. I’ll open the refrigerator and pull out some Italian sausage, some
hamburger, some green pepper, onion and celery, and lay them on the kitchen
counter. I’ll turn toward the pantry and
gather a few cans of pureed tomatoes, some tomato paste and a handful of
different herbs. After a few minutes pass, Chris appears right beside me
wielding his favorite chopping knife and a cutting board to serve as my sous
chef. No words are spoken. We each enact
our own steps as if to follow a well-choreographed dance that we’ve done many
times before.<o:p></o:p></span></div>
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<br /></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">The
aroma begins to fill the house. The table is set and wine is poured. We calmly
sit together as a family. Plates are heaped with noodles (sometimes homemade if
we are all feeling particularly in need of comfort), then ladled with sauce.
Sprinkles of fresh parmesan are dropped on the surface like little snowflakes.
The boys eat their meal in the characteristically fragile X way, with the
fervor of a famished animal, wiping their faces and leaving the table. Chris
and I are left to enjoy the fruits of our labor and a glass of Chianti. This
always seems to incite calm conversation followed by settled nerves. It’s a small thing, but for us it’s what
gives us joy and resolution. We can come together over a delicious meal and
approach whatever is hovering overhead in a more approachable mood, together.
We seem to have some of the most productive conversations over a meal we’ve
prepared together.<o:p></o:p></span></div>
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<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh07NY2_7ezwgBpahol7OWo9GIiqji9KLRzS25BVAfaQLbdtoQGwLDqXalzLO0gXxZnTcMT8t1PaAddKvfsgrY9GgjI3_v1PY0kftwFtTqk9TqSLHBNBcKrz2xGbaFeklxD2zRJHb5Zdsk/s1600/1503939_10202744052544736_223156504_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="516" data-original-width="782" height="211" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh07NY2_7ezwgBpahol7OWo9GIiqji9KLRzS25BVAfaQLbdtoQGwLDqXalzLO0gXxZnTcMT8t1PaAddKvfsgrY9GgjI3_v1PY0kftwFtTqk9TqSLHBNBcKrz2xGbaFeklxD2zRJHb5Zdsk/s320/1503939_10202744052544736_223156504_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of many instances where we share a special meal together--my birthday.</td></tr>
</tbody></table>
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<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">I
realize how incredibly lucky I am to have a life partner that supports me no
matter what the challenge, and I him. I
have a best friend that I can lean on or cry on whenever I need to. No marriage is easy, I realize. There are tough times in every life. There
are days that I curse him and he curses me.
Let’s be real here. We are human. We have all of the normal married life
stresses, along with one additional, huge element.<o:p></o:p></span></div>
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<br /></div>
<br />
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">Having
a devastating diagnosis of Fragile X Syndrome for both of our sons has added a
huge layer of stress, responsibility, a shift in our dreams and hopes,
financial hardship, an uncertain future, and yes, daily frustration. We are in
this life together for the long haul. Nothing
is even close to the way we dreamed it would be in those early years……it’s
better.<o:p></o:p></span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;">During this month, I will share our vision for the future as we face difficult decisions.</span></div>
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<span style="font-family: "Times New Roman","serif"; font-size: 14.0pt;"><br /></span></div>
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<i style="color: #333333; font-family: "Times New Roman", Times, FreeSerif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman", serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i></div>
Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com1tag:blogger.com,1999:blog-6537170817799988298.post-44188318896772165302017-07-05T08:53:00.003-07:002017-07-05T09:12:43.153-07:00What the Facts Will Never Show About Fragile X Syndrome<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">July is <span style="background-color: white;"><span style="color: #38761d;">National Fragile X Awareness Month</span></span>…..and
there are a lot of things that you will NOT learn about Fragile X Syndrome by
looking at Facebook or Twitter. Let’s
start with the things you will learn by going to the website <a href="http://www.fragilex.org/" target="_blank">fragilex.org</a> or by reading posts from people
on Facebook or Twitter.<o:p></o:p></span></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">-Fragile
X Syndrome is the most common inherited cause of intellectual disability and
autism and can range from mild to profound impairment.<o:p></o:p></span></i></div>
<div class="MsoNormal" style="line-height: normal;">
<i><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">-<span style="background: white; color: #1d2129;">The gene responsible for Fragile X is
called FMR1 and is found on the X chromosome. Everyone has the FMR1 gene on
their X chromosome</span><o:p></o:p></span></i></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">-The
FMR1 gene was identified in 1991. The
FMR1 gene makes a protein (FMRP) that is important in brain development.
Individuals with Fragile X Syndrome (FXS) have a deficiency of this protein.<o:p></o:p></span></i></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">-Mutations
or changes in the FMR1 gene lead to developing one of the Fragile X conditions.</span></i><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">There are a myriad of other things to know factually
and scientifically about this genetic developmental disability, so I hope that
some percentage of you will take advantage of the onslaught of information
available during this month to really learn about Fragile X syndrome.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I consider myself to be highly qualified to speak on
the subject due to the fact that I have two adult sons that were born with Fragile
X syndrome. Somehow, 26 years of living
with it makes me a certified expert….or something of that nature. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Sometimes, I find much of the information on the
subject to be equivalent to blah, blah, blah, blah…..blahhhhhhhhh. All of the scientific jargon is well and
good, but it doesn’t get to the real picture of what our life truly looks
like. For that, I need to dig deeper and
take a chance by opening up myself so that you can glean, perhaps, even a small
taste of what it’s like day-to-day.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">There are good days and bad days, much like every
other human being on the planet. But the
bad days can be really bad. Behaviors
have been a big part of our life, although they have dissipated as our sons
have aged. Sleep problems are also
common in children with the full mutation of fragile X, which in turn, causes
the parents to be sleep-deprived and cranky.
Stresses about the children’s needs and the financial means to meet them
are ongoing.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">As a couple, our worries are unlike any other
couples that we know—they are far-reaching, and will <i>never</i> end until we die. Our
children will be our responsibility until that time; day……………and night. We will
likely never be “empty nesters” in the true sense of the word. Having a night
out together as a couple can be a real challenge, let alone a weekend away. Imagine…..finding a “sitter” for two adult
men, ages 26 and 28 years. Not an easy
task.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Getting our sons jobs, helping them in everyday
tasks, keeping them safe, coordinating appointments, mastering technology so
that we can try to stay ahead of whatever device is necessary in their routine,
and on and on and on and onnnnn…………..it can be <i><u>overwhelming and exhausting</u></i>.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">But……we’ve found ways to cope with all of it. It’s become our way of life and we’ve managed
to create a pretty nice life at that.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">In the midst of all of this lack-of-what-we-don’t-have,
let me also tell you what my husband, Chris and I <b><i>do</i></b> have that facts will
never display.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">We’ve become members of a society that no one wants
to join, but once there members are glad to be a part of. As a result of some
stupid gene that mutated without our consent, we now have friends all over the
world that I know we could reach out to on any given day, make a request, and
it would likely be met with the words, “How?” and “When do you need it?” We
share a special bond.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">There have been many opportunities for our family to
meet other families in smaller venues; more intimate opportunities like the one
we just left. Our family just spent 5
glorious days with two other families, in the beautiful splendor of Montana camping
and enjoying every moment together. When we were together as families, these
friends never asked why our sons do this thing or that. There was never any
question about what kind of disability our son has, or why they are on a
certain medication, or why they might open the RV entry door appearing solely
in their underwear. Nothing was
strange. No explanations were needed. No
looks of disdain or embarrassment were exchanged between parents. It was so comfortable, like my favorite pair of aged, well-broken-in shoes.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Our children never felt weird around each other,
never needed to have constant interaction, or even say a word to each other to
know that they were there….just being themselves. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">A simple 99 cent beach ball provided hours and hours
of fun in the campground swimming pool for seven kids ranging in age from 10 to 28. No questions were asked. The directions were
simply understood and everyone was in the same zone. The feelings of joy abounded
as each child did his or her part to play the game of hitting the ball back and
forth. Each adult beamed with a smile from the skills that their own child and
those of others, exhibited. Perhaps
there were newly found skills, or perhaps they were familiar. It didn’t matter. A warm relief rose up in me
knowing that my sons were having so much fun. It didn’t matter what genes they
were born with. There was no attention paid to the things they couldn’t do. The
focus was simply on fun.<o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsr0Ofm8jSMNm8xjbAsdrwQ1kQxjkN3XyyRqmMPngPavnGgT9VbnggQZCJ-ZEqfq8YIu3RlQLbSnWM_rxe0x-scaUqchEW54reSsC2-NCfoOVjunLbHlvEy62hyphenhyphenOjbPzRlIBQ1iE4in7g/s1600/20170702_111529_1499268234214_resized.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhsr0Ofm8jSMNm8xjbAsdrwQ1kQxjkN3XyyRqmMPngPavnGgT9VbnggQZCJ-ZEqfq8YIu3RlQLbSnWM_rxe0x-scaUqchEW54reSsC2-NCfoOVjunLbHlvEy62hyphenhyphenOjbPzRlIBQ1iE4in7g/s320/20170702_111529_1499268234214_resized.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">7 kids and 3 Dad's with our 99-cent beach ball</td></tr>
</tbody></table>
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<span style="font-family: "times new roman" , serif; font-size: 14pt;">During several sessions of swimming and beach ball hitting,
another beautiful thing happened. Other kids without fragile X syndrome saw how
much fun we were having as the ball volleyed back and forth between kids and
parents, and they wanted to join in, too. There were small kids and even teenagers
that paid no attention to any genetic developmental disability—they just saw
fun and wanted to be a part of </span><span style="font-family: "times new roman", serif; font-size: 14pt;">it. They were just being kids.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">We shared three meals a day together, accommodating
everyone’s taste preferences, without incident. Bedtimes were flexible based
upon each person’s personal routine (routines are critical in our life!). No
sacrifices were made. Parents helped each other’s kids with mindless effort. Stories
were shared around the campfire as heads nodded in familiar adoration.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">The daily feeling of anticipated-explanation and necessary definition-giving conversation that the public requires were absent during this 5-day trip. There was no need for these dreaded words. It was all unspoken, familiar experiences. <i>THIS</i> was the antidote that we all relished.</span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">This morning, we gave hugs, elbow-fives, high fives,
and hugged again to close this visit of friends that came together through a
challenging, devastating genetic developmental disability. We packed up the
last camping chair, and prepared “Rocket” (our RV) for the journey home. Then, we waved incessantly until we could no
longer see the physical presence of these dear, special friends.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Now, as Chris skillfully guides “Rocket” southward
toward home, we both feel content and fulfilled. This visit was just enough of
a recharge to get us through whatever may come our way, until we can do it all
over again. It reassures us once again
that we are never alone. The importance of this one thing is larger than I
could ever portray. <o:p></o:p></span></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlLeVmbku79YyIc38vjfUupOr9BP65SGWVseAcfoxGqCY4UwAxU5d37FHkrJZ_Dzim_xN1LEqF68MorhJRz64qSvIjU0qZYS3v6D_lTuepWQb2ZZlhMoRsg0Sr80DXNIcvWaTKcSAsZck/s1600/20170704_182123_1499268233500_resized.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjlLeVmbku79YyIc38vjfUupOr9BP65SGWVseAcfoxGqCY4UwAxU5d37FHkrJZ_Dzim_xN1LEqF68MorhJRz64qSvIjU0qZYS3v6D_lTuepWQb2ZZlhMoRsg0Sr80DXNIcvWaTKcSAsZck/s320/20170704_182123_1499268233500_resized.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Our older son receives a long-awaited, but promised, "hoodie hug" from our friend</td></tr>
</tbody></table>
<span style="font-family: "times new roman" , serif; font-size: 14pt;"> </span><br />
<br />
<div class="MsoNormal">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Next month, we will celebrate 32 years of wedded
bliss and we will continue our effort to face each day with resilience, love and
compassion. We will do our best to provide our adult sons with a high quality
of life through focus and determination. In many ways, I think it’s what pulls
us all together even closer. We are not perfect, but we do our best most days. It’s
not easy when a marriage has the added stress of a fragile X gene thrown in. As
July ticks quickly by, I’ll share a few of the experiences we’ve endured in our
marriage…………… so keep reading.<o:p></o:p></span></div>
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<i><span style="font-family: "times new roman" , "serif"; font-size: 12.0pt; line-height: 115%;">To
learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://www.mrsrogersworld.com/" target="_blank">mrsrogersworld.com</a><o:p></o:p></span></i></div>
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Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com13tag:blogger.com,1999:blog-6537170817799988298.post-29853486154083791852017-06-26T13:24:00.000-07:002020-07-02T09:35:38.465-07:00WHY I HATE JULY<div class="MsoNormal" style="line-height: normal;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">This coming Saturday may be a normal day
for most people. It’s a work week end! It
may be a Saturday summer day where one can enjoy the out-of-doors, maybe swim
in the heat of the sun; a day with friends or family at a baseball game
or kids sporting event….but for me it’s not that. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It’s July 1<sup>st</sup>. The first day of the month where families all
over the United States begin to “celebrate” <b><u><span style="color: #4f6228; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #4F6228; mso-style-textfill-fill-colortransforms: lumm=50000; mso-style-textfill-fill-themecolor: accent3; mso-themecolor: accent3; mso-themeshade: 128;">National Fragile X
Awareness Month</span></u></b>……a month I never would have even known about had
it not been for a devastating day back in 1991.
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">That was the day that my husband and I
learned that our beautiful baby boy, then two years old, had a genetic
developmental disability that we had <u>never</u> even heard of….<b><i><span style="color: #4f6228; mso-style-textfill-fill-alpha: 100.0%; mso-style-textfill-fill-color: #4F6228; mso-style-textfill-fill-colortransforms: lumm=50000; mso-style-textfill-fill-themecolor: accent3; mso-themecolor: accent3; mso-themeshade: 128;">Fragile X Syndrome</span></i></b>. My husband and I sat blank-faced as the Dr.
revealed that Fragile X Syndrome is the most common form of genetic intellectual
disability. As the words continued to
spill out of her mouth, I felt tears well up in my eyes, not believing what I
was hearing. It was an X chromosome abnormality that effects 1 in 3,600 to
4,000 males in the world, and our son had it. The future suddenly turned very
dark and dismal. It was also the day
that we learned that our, then, 3-day old youngest son had an 80% chance of
also having the very same diagnosis….and he did. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We’ve spent the past 26 years learning
something we <i>never</i> wanted to
learn. We spent the next 26 years wading
through blood, sweat and tears in an effort to do things we never would have
dreamed about during our 8-year courtship where we talked about our future like
it was some kind of fairy tale. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">My husband of now almost 33 years, and
I, have faced challenges that no couple, no human, should have to endure. We’ve watched our handsome, seemingly
normal-looking sons overcome the many obstacles that this damn genetic
predisposition has laid before them. Through years of speech therapy to combat
a significant speech delay, they’ve come out with only about 100 words. Through
years and frustrating hours of occupational therapy to learn to cope with the
extreme sensory defensiveness and lack of motor skills, nerves have been
shattered. We all display scars from moments of uncontrollable meltdowns caused
by behavioral issues that we had yet to know how to avoid. Financially, the
marks of necessary treatment, trials, medications and hardship are evident in
our bank book.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As a Mom, the grief, the guilt, the
depression and pain are always hiding in the background, just waiting to emerge
and engulf me like a prickly wool blanket wreaking havoc on every cell of my
being. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">But, this is now our life-long reality
and we must deal with it. We <i>are</i> dealing with it. Despite all of the
day-to-day challenges we tackle, we deal with it. What choice do we have? We didn’t ask for this diagnosis! We can
either fight through each day and hope that our sons will become happy,
contributing members of the community….or we can lie down and let it win. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">WE CHOOSE FIGHT! <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 14pt;">I ask……no I plead with you to take just
a moment of your time and learn about </span><span style="font-size: 18.6667px;"><a href="https://fragilex.org/fragile-x/" target="_blank">Fragile X Syndrome</a></span><span style="font-size: 14pt;">. If you have just a glimmer of empathy in your
soul….learn. Our sons and all human
beings with Fragile X Syndrome are worth your time…I promise. They will enhance your own life ten-fold.<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">If you want to learn more about me and
my family, check out my website <a href="http://mrsrogersworld.com/" target="_blank">Mrs Rogers World</a>. Hint: We are doing just fine </span><span style="font-family: "wingdings"; font-size: 14.0pt;">J</span><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"> Over the next month, I will
attempt to portray the past 26 years and give you a sense of our world. I hope you will follow along. I guarantee it will be worth your time to immerse yourself in our story.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><i style="color: #333333; font-family: "times new roman", times, freeserif, serif; font-size: 13.524px;"><span style="background-color: white; font-family: "times new roman" , serif; font-size: 12pt; line-height: 18.4px;">To learn more about Cindi Rogers, her book or follow her family, please visit <a href="http://mrsrogersworld.com/" target="_blank">mrsrogersworld</a></span></i></span></div>
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Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com2tag:blogger.com,1999:blog-6537170817799988298.post-3045658769467039152017-04-14T13:28:00.003-07:002017-04-14T13:28:51.109-07:00It's Difficult to See the Blessings Through Tears<div class="MsoNormal">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9xMUyus0URSmCDIt6TIKObh2pWraxdH3_iUYaVIqHrroEjrRppDvRF1x7ch7_gyJPI8mRjdLLwN_0yR_kZLa7HP0JYaA608d2x7uz8YsbNBx6KVQ1bNRtQ0PMplKPrEydTgEaM7ql_cI/s1600/Mom+and+Jake+Easter+1992.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="186" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi9xMUyus0URSmCDIt6TIKObh2pWraxdH3_iUYaVIqHrroEjrRppDvRF1x7ch7_gyJPI8mRjdLLwN_0yR_kZLa7HP0JYaA608d2x7uz8YsbNBx6KVQ1bNRtQ0PMplKPrEydTgEaM7ql_cI/s200/Mom+and+Jake+Easter+1992.jpg" width="200" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Mom and oldest son-Easter 1993</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Holidays always elicit mixed emotions for me. I often use holidays as a yard stick-a
measuring implement to gauge the progress of my two sons. Photos from past years stir up feelings of
happiness or even sadness, good times or not-so-good times, making it difficult
to immerse myself in the blessings of each passing year.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">When our oldest son was just learning to walk,
around the age of 2, I ignorantly imagined that he was ready to participate in
a childhood rite of passage--dying and hunting for Easter eggs. At the time, I remember thinking how
wonderful it would be to organize the egg dyes, each one mixed with care,
prepared in little matching plastic cups, ready for him to patiently dip each
egg and wait for it to magically turn a bright color. I purchased the necessary items, methodically
prepared each cup, dropping in the little tablet, mixing it with the vinegar
then stirring to reveal a new color. I
put a drop cloth on the floor, knowing a toddler could wreak havoc on a floor, me
smiling in anticipation of what was to come.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">The moment that I plucked our son away from his spot
in front of the television, watching his favorite program, he began to
wail. I cradled him close to my body to
reassure him that my idea would be much more fun than whatever he was watching,
I was sure. He quieted some. I effortlessly
shifted my grasp to high under his armpits, as all Mothers learn to do, bent
his little limp body to slip his legs into the highchair, and moved to set him
down. Sometime during the split-second
maneuver, he flailed his arms, knocking over the perfectly placed cup of blue
dye. It fell to the floor onto the
smooth cover, spilling over onto the hardwood floor. As it fell, I inhaled sharply in a startled
gasp, causing him to start, resuming the ear-piercing wail. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">My mood and my determination plummeted. My disappointment rose to the surface. I
paused, as I sat next to him crying, evaluating my own motivation and
reasoning. Nothing seemed fun about that
moment at all. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Every emotion possible floods back to me as I hold a
photo from Easter, 1993. I am bent over attempting to convince our oldest to want to participate, search for eggs and to smile. My own expression is hidden, but I can remember feeling a bit hopeless at my failed attempt. His expression is not one of fun, either. His expression exudes uncertainty. He was still in a
horrible phase of extreme fear at the mere sight of any kind of grass or
lawn, so I chased him around the patio. He had no idea what we were doing
when it came to searching for eggs. He
didn’t even like to eat eggs! My hand
was completely guiding him into some kind of unknown territory that simply
scared the crap out of him. Nothing even
remotely close to the word fun.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Another photo from Easter week 1997 elicits another
memory completely. My husband, Chris and
I, sit relaxed and smiling in a little restaurant in the center of Paris,
France. He sits handsomely in his new
suit, purchased just for this trip, and I, leaning toward him on his left,
wearing a brown fitted dress with matching jacket, both of us smiling wide and looking our best. The
photo appropriately gives the feeling of a relaxed evening among friends,
sharing wine and good food. On both sides, we are
surrounded by some of the greatest minds in the world of Fragile X Syndrome, a
genetically transmitted cognitive disability that both of our sons had been
diagnosed with some six years earlier.
As I stare at the image, the emerging emotion is one of utter warmth. Why would such a photo representing a devastating
diagnosis, ever bring on such a positive emotion?<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">After six years of grieving, struggling, and
questioning all things on the earth, this one single week proved to me that we
were not alone. We met professionals and
families alike that knew what Fragile X Syndrome was. We were welcomed into the
homes and at the tables of families just like ours, albeit in the romantic
surrounding of Paris. They’d all had similar stories to tell, and they all
shared them us. We learned that there
were Doctors that cared and sweated and aimed to help us. I shared our family’s story. The audience applauded with a look of
familiar sadness in their eyes. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Now, here our family is, 20 years later. Easter weekend is once again upon us. We’ve learned many lessons over the years,
mainly how to make it meaningful for our family and do it in a way that makes
sense for our very adult sons. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Many years ago, I threw away all of the paraphernalia
associated with egg dying, knowing that it wasn’t necessary to mark this
holiday with an egg hunt. The four or so
years of tearful photos of both sons proved that point loud and clear. So, we moved on, doing what wasn’t “typical”
in order to live a happy life for us—not as dictated by the convention. Yes, it was sad for me in the early years,
seeing photos of other children with broad smiles on their faces, holding
little baskets, dressed in finely pleated costume, as they bent to retrieve the
treasured colored egg. That picture is
not a happy life <b><i>for us</i></b>.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">This year, we planned the usual dinner in the dining
room with napkins on laps, the air filled with smells of yummy choices that I
have prepared with care. But….there will
be one new addition. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">About a week ago, as we reviewed the week’s upcoming
events with our sons, as we always do, listing Easter and dinner and visitors,
we had our own surprise. Because it is
helpful to alleviate any anxiety for our guys, I rattled off some of the familiar
things to give ease to the dialogue; ham, potatoes, deviled eggs, jello salad,
rolls, coconut cake, sit in the dining room.
I was met with the occasional, “Yeah”, or “Mmmmm” as I listed off each
item.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">In a surprising twist, our oldest who has limited
verbal skills, immediately responded, “Eggs, there!” (pointing to the back
yard)<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I looked at Dad, who seemed as surprised as I was. I looked at our son with that hopeful
expression on his face, and said, “You want to hunt for eggs in the back yard
on Sunday?”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">He said, “Yes!” with all of the fervor he could
muster.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">I said, “Ok, I will put it on the calendar for
Sunday.”<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Now, at the age of 28, I wonder if he has any real
recollection of those egg hunts all those years ago. It doesn’t matter. He wants it now, so I will oblige. There is no age limit for egg hunts.<o:p></o:p></span><br />
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><i>Dad taking a break from "fun" with boys 1993</i></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">Sometimes it’s hard for me to see the blessings
during any holiday as I am deluged with images of cute, eager faces on typical
children enjoying a typical Easter celebration with family and friends. As I gaze at my own photos of years gone by,
though, I realize that all I need to do it look for blessings and I will find
them right in my own midst.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">When I look at the photos of our, now two adult sons,
when they were very young, I realize how very far they’ve come since those
difficult toddler years, I am in awe. I’m
in awe of their growth, yes, but also their courage, determination and
perseverance. They have far exceeded any
expectations we had in those early years.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;">When I look at the lovely memories from our trip to
France, knowing it’s been a very long time since my love and I have had a vacation
alone, I still feel an overwhelming sensation of warmth, happiness and
camaraderie. These photos represent a
real emergence into a world of fellowship that we’ve come to need and
enjoy. Back in 1997 there was no
Facebook. Now we are able to share and console on a world-wide scale, knowing
that we will NEVER be alone—no matter where we are. That is one blessing among many that I am filled with.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt; line-height: 115%;"><span style="font-family: "times new roman" , serif; font-size: 18.6667px;">To learn more about Cindi Rogers visit: </span><a href="http://mrsrogersworld.com/" style="font-family: "times new roman", serif; font-size: 18.6667px;" target="_blank">www.mrsrogersworld.com</a></span></div>
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Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-44214533761698519632017-04-03T13:41:00.001-07:002017-04-03T14:40:27.116-07:00Why I Don't Want the World to See My True Son<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJyFD9RhQOwTYhRGENWSuX0gOXHj7yOfa-DG1C1MkE85cx2quzIFuS1mnuBjagTkp5ZA7LWOHzg4D_6hlCwgT3AXTQ-0lzzPsJkcw03s4gb0fMotjYeKkePA1XxafqSOiITu7LqREWndM/s1600/11217560_10207371442866602_1126920261978220390_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="209" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJyFD9RhQOwTYhRGENWSuX0gOXHj7yOfa-DG1C1MkE85cx2quzIFuS1mnuBjagTkp5ZA7LWOHzg4D_6hlCwgT3AXTQ-0lzzPsJkcw03s4gb0fMotjYeKkePA1XxafqSOiITu7LqREWndM/s320/11217560_10207371442866602_1126920261978220390_n.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">My morning started at 3 a.m. with him
waking, heading straight for the bathroom, thinking it was time to get up. Hearing him with the one ear that I keep
open, I dragged myself to his bedroom, grabbed his pillow and “woobie” and
guided him to the family room couch where I hoped he might go back to
sleep. I tucked the covers around him,
then spoke the words I’ve spoken about a million times in the past….”It’s
nighttime—not time to get up yet. Go to
sleep.” I placed a nearby pillow over
the lights that reflect from the DVD/VCR combo that sits directly across from
the couch where he lay, hoping my efforts would incite further sleep. I briefly scanned the rest of the room to
make sure I had not overlooked any other sleep detractors, then slithered back
to my own bed.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Of course, this kind of problem-solving
may not seem strange, unusual, or even unconventional to one who has
children. Trying to get a child to sleep
in their own bed or sleep regular or continuous hours can be a years-long
project for a typical child. But trust
me…this is not normal or typical or conventional. Our son is 26 years old.<o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Even though he is 26 years old, a diagnosis
as an infant of fragile X syndrome and later an additional diagnosis of Autism,
his genetic fate has been known to cause widespread sleep issues, as well as,
on rare occasions, some pretty aggressive behavioral problems. Our couch routine is a highly unorthodox
evolution of trial and error that works about 80% of the time. The unorthodox
or unconventional part of the whole thing is that he <b><i><u>IS</u></i></b> 26 years old. A 26-year-old with a genetic developmental
disability that will be with him the rest of his life……..and ours.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">When we look at a diagnosis of fragile X
syndrome or Autism, one person’s diagnosis does not automatically inject all of
the “check list” items to every individual, but, in the case of our youngest
son of which I speak, it has. (To learn
about the traits of fragile x syndrome, click here <a href="https://fragilex.org/fragile-x/fragile-x-syndrome/">https://fragilex.org/fragile-x/fragile-x-syndrome/</a>
or it’s relationship to Autism, click here <a href="https://fragilex.org/fragile-x/fragile-x-syndrome/autism-and-fragile-x-syndrome/">https://fragilex.org/fragile-x/fragile-x-syndrome/autism-and-fragile-x-syndrome/</a>). We also have an older son, 28, with the same
diagnosis, but he’s as different as night and day! Go figure.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I am a very strong Mother who has taken
particular pride in my ability to learn, create and teach specific methods and
approaches that have, for the most part, afforded my two sons a high quality of
life, despite this genetically passed predisposition. Today, I blame myself. Today, I am personally responsible for
molding a negative outcome to a specific situation. Me.
The advocate, mentor, teacher, friend.
<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Suffice it to say that the couch routine
did not work its magic this morning.
Another visit from him in our bedroom at 4 a.m. and then again at 5
a.m., strongly indicated that our efforts had failed. The day had begun, despite our objections and
diligent efforts. This small failure I can live with. We’ve failed on this today, but we can live
with it. We’ve learned to live with
it. On a normal day, our son, given
every other accommodation, could go through his day quite successfully, despite
this one small failure. But, this is just one of many challenges we face every
single day.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Three weeks ago, we, as his court-appointed
legal guardians, received a letter stating that he HAD to appear before a
federally appointed medical examiner to determine that he was still
disabled. That appointment was today,
Monday, April 3<sup>rd, </sup>2017 at 9:45 a.m.
<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I will never get used to the idea that
we will need to face many days when we are required to meet with this person or
that person in order to prove that our son is disabled; question after question
driving home the fact that he will never do this or that; never live alone;
never be safe alone; never be married; never give us grandchildren; never….never….never. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Each day we wake up, stretch our arms
and welcome a new day when we can defy all of the restrictions on our son and
strive to help him overcome every single little thing that tells him he cannot,
when all we want to do it make it possible.
But we do. Several times a year,
whether it be when our kid with a disability is in school, or as an adult when
we need this service or that, we are required to shift our minds toward every
little tiny thing they cannot do by themselves.
This is one of those times.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">For every other single situation or
incident, I would do everything in my power, spend countless hours researching,
planning and preparing him to have a successful outcome. I would prepare a visual schedule, using
symbols that make sense to him in his world using tried and true methods. I would go over the schedule with him ahead
of time and even make a reminder on his monthly schedule so that he would have
time to allow his physical response to acclimate, essentially minimizing any
negative behaviors. In the past, I’ve
done this to help him with his volunteer jobs, his self-care, his doctors
appointments, social activities and every other conceivable part of his
life. Not today.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Oh, yes, I called 10 days ago, but was
told that no information could be given in advance as far as what the appointment
would look like. Yesterday, as I
anticipated today, my mind shifted back to when he was young and we didn’t know
all the right things to do and use to help him.
My emotions remember well a certain visit to a doctor many years ago
that resulted in him having to be restrained due to extreme aggression. I also remember the fact that I had not
prepared him in any way, shape or form for that visit. Anxiety welled up inside me as I relived that
day in my mind. How could I possibly make today a positive outcome with no
information? I have no idea. I am no magician. I am just a Mother with a typical brain and a
pretty severely disabled son that does not understand many things in his world
on a normal day, given no accommodations.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">This morning, as the two of us got into
the car, with only his backpack in tow, I minimized what verbal information I
gave. I had nothing to go on. I didn’t know the doctor, I didn’t know the
building, I didn’t know the process. How
could I help him? All of the things I had used in the past were not available
to me today. I had to give the one and
only thing I knew. I said, “Mom has to
go talk to a lady.” I carefully chose
these words knowing that it is a new phrase that I have not used before. It
wasn’t a predefined phrase with historically important meaning for him—no negative
or positive connotations. I know he is listening, but he says nothing. I know he trusts me, but at this moment I
have no idea if I trust myself. We drive
in silence the rest of the way.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As we pull up and park in front of this
unfamiliar building, he is making a noise that I am all too familiar with….a
sort of nervous grunting noise. Based on
past experience, I know this is not good.
<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I remind him that, “Mom has to go talk
to a lady. Are you ready to go in?” <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">He replies, “No!” I remove my seatbelt, grab my purse and open
my door, determined to push through.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I say, “Get your backpack. Let’s go see
the lady Mom needs to talk to.” He does
as he’s told. He’s still making the
sound….that warning sound. </span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We walk to
the front door of the building, and I open it, waiting for him to go in
first. He enters the building and I
point in the direction that we need to go….Suite 100. I push the heavy door open to the office,
step inside, and he stalls in the hallway.
I know he is visibly nervous and anxious about all of the things that he
is unfamiliar with. I do not know how to
help him. I don’t know the facts myself.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I wave him in and he moves into the
small, stark, stuffy room, furnished only with a row of chrome-framed chairs
with black vinyl covers and an old-fashioned candy vending machine—the type
that you slide a coin in, turn the rectangle-shaped knob and the candy
dispenses behind a little metal door. On one side is a glass-covered window
behind which a lady sits. She slides the
window open and asks his name. I give
it, and she passes me a clipboard with four closely-filled pages of information. <br /><br />She says, "This needs to be filled out in its entirety with every space filled in, even if it’s an N/A”. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Before I can even sit down, he proceeds
to push the candy machine back and forth on its carefully balanced pedestal,
nearly knocking it over, causing me to inhale sharply. I rush to it, reach my hand out and steady it
upright, forgetting to exhale. He kicks me in the shin, then paces back and
forth. I motion for him to sit next to me in a chair. No dice. He is searching my face and eyes for
some sign of what we are doing and when we will be finished so he can get back
to his familiar place. I move back
toward a chair in an effort to begin the paperwork. He kicks me again. I shift to miss another kick and ask him to
sit once again. I know his behavior is only a form of communication. Nothing I say can make it ok for him.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The window slides open once again, and
the lady says they have a back waiting room and to please follow through the
closed door. I stand, motioning for him
to follow with his backpack and he does.
We are directed to another row of chairs behind a half-partition. I sit and he paces then kicks me swiftly in
the foot. I say a few words in protest,
then he walks back toward the first waiting room, opening a cabinet on the way,
like it was hiding a secret escape. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">A doctor appears, grabs the door of the
opened cabinet, closes it and says that it might be better if we go back and
wait in the first area until our turn—a suggestion I knew would only raise
defcon levels higher due to the maximum number of transitions allowed for my
son. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We barely reach the first waiting area
when I feel another swift kick to my other shin. Some newly appearing papers
sit atop the counter that leads to the glass window which he sees and instantly
swoopes to the floor. I see his head
shift, and the candy machine is once again a target. I gasp and reach to save it just in
time.</span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"> <o:p></o:p></span></div>
<div class="MsoNormal" style="line-height: normal;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Another lady suddenly appears and
suggests that perhaps this kind of behavior is not acceptable. I feel tears come to the bottoms of my eyes,
and apologize, but remind her that he is unfamiliar with his surroundings and
that I am doing my best. She submits
that the car might be a better place for him.
I agree wholeheartedly, as I swing my purse to my shoulder and grab the
untouched clipboard.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">He is never so happy as to exit that
building and migrate back to the comfort of his car. He is still anxious, but relieved to be “out”
nonetheless. He gets in the car, buckles
up and sits, waiting to hear what is next.
I explain to him that I still have to talk to the lady, but I need to
finish the papers first. I stand outside
the car in the fresh breeze while I attempt to fill in each space completely,
leaving nothing blank as I was directed to do.
<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I finish the paperwork, lock the car,
leaving his window slightly ajar, and return to the office alone, still feeling
a bit embarrassed. I realize as I am
walking in that these people have never met my amazing son; the one who loves
his volunteer jobs; the one who can make a basket with his basketball team; the
one who savors his life on earth set in the comforts of his rote, structured
life. But, I stifle those thoughts while
I am escorted into a Doctor’s office to once again describe in detail, all of
the things he cannot do. I am forced to
think of him as compared to a peer of his same age. They will never see anything of him except
those behaviors that he exemplified, characteristic of his genetic disability,
yes, but not the real <i>him</i>. The lovely, huggable, smiley, charming, <i>him</i>.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">This is the <i>him</i> that I never want the world to see. This is why I work every single day, and my
husband works every single day, and those that love him work every single day,
to make his world manageable……and wonderful…for <i>him</i>. He is not the sum of
these parts. He is the product of those
who love him and those who make the accommodations necessary to allow him the
awesome quality of life that defines <i>him</i>.
<o:p></o:p></span></div>
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<br />
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I don’t want the world to remember him
solely by what is written on the pages of documents possessed by government
agencies that provide him the resources he needs. It must be presented gently and carefully by
those who know him day to day, week to week and year to year and teach him what
he needs. Those who love him are
responsible for helping him put his best foot forward and overcoming every
little challenge he is capable of overcoming.
There will be some winner days and some loser days. This is the life of fragile x syndrome and
Autism for us. This is what we strive
for every single hour of every single day.
This is the real fragile X syndrome and Autism. As dutiful messengers, we will strive with hope and love in our hearts to broadcast on their behalf:<br /><br />Our children are more than just the sum of their parts; good and bad; frustrated and passionate; successful and determined. <o:p></o:p></span><br />
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><br /></span>
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;"><span style="font-family: "times new roman", serif; font-size: 18.6667px;">To learn more about Cindi Rogers visit: </span><a href="http://mrsrogersworld.com/" style="font-family: "times new roman", serif; font-size: 18.6667px;" target="_blank">www.mrsrogersworld.com</a></span></div>
Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-18284706824816218152016-11-04T13:12:00.001-07:002016-11-04T19:24:14.598-07:00A Hard Landing on the Planet Reality<div class="MsoNormal" style="line-height: normal; margin-bottom: .0001pt; margin-bottom: 0in;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">If
you are new to this story, catch up by clicking here if you want to read from
the beginning (I promise it’s not too long): <a href="http://mrsrogersfxneighborhood.blogspot.com/2016/01/its-lofty-goal.html" target="_blank">It's A Lofty Goal</a><br /><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">What
would possess a seemingly “normal” husband and wife with two developmentally
complicated, demanding, behaviorally challenging sons to try and fly a total of
14 hours to have, what we assumed would be, a vacation in paradise? You guessed
it….<b><i>the
pursuit of a happy life</i></b>.
Yep. That’s what drove us to the
challenge of our lifetime, thus far anyway.
We learned so much that I feel that I must share it with those of you
that are stuck in that horrid stage of FEAR.
Fear kept us from doing it sooner.
Fear kept me awake at night for almost a year before we finally did
it. Fear is the one thing that
previously cemented me firmly on the ground instead of in the air.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Fear
is a real thing when you have children with any kind of developmental
disability. Sometimes their behaviors
can be unexpected and uncontrollable, just like all things in life. So, the easiest thing to do is do nothing, go
nowhere, keep them in their safe environment.
But, this is not us. As hard as
it may be to step outside of our safe environment, we have tried to push our
two sons to do things that can be hard.
Thankfully, we have had incredible support from Doctors, therapists and
others, which has allowed us to sometimes try, fail, and try again. This situation is no different.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">If
you’ve read the back story, you already know that we spent A LOT of time
preparing for our first ever vacation to Hawaii. Any typical family would spend
some quality time getting flights, booking a hotel and reserving excursions…but
we are not a typical family. Our
processes were quite different. <b><i>That
reality</i></b> became quite clear to me as the long process went on. We have been fortunate enough to have visited
all of the lower 48 U.S. states in the comfort of our RV, lovingly named
“Rocket”, but we’d never braved the friendly skies. It is one thing to be in the comfort of your
own RV, and quite another to expose oneself to the vast public full of
judgement and scrutiny from strangers also traveling. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
months leading up to “D Day (departure day)” were methodical and focused, with
overall positive outcomes. The week
leading up to D Day was intense. I had
two notebook pages containing my list of things that had to be done, including
to-do’s for the house, our business and the trip. No matter how hard I tried, my sleep was
disturbed by thoughts of all the things that could possibly go wrong. I didn’t want to miss anything if I could
help it. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Traveling
such a distance with Jake and Joe required much more detail than if it were
just my husband and I. I reverted to the
things that I knew worked well in all of our past endeavors—the tools from my
tool box (pictured below) were ready and waiting. </span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4-cvq32c0Qj14G4TR_aqQq1YrTObk4u_mR-ulAmE8oKiLYUI56FDSZQd-WOwv42kZFYUSvoiwj5O2d41HhSHgXUOpICMj8W6NS-M4IFKQuMQD6axO2EbA5K0JPyE5jrnjsQ36fa7BY4A/s1600/Cindis+Toolbox.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj4-cvq32c0Qj14G4TR_aqQq1YrTObk4u_mR-ulAmE8oKiLYUI56FDSZQd-WOwv42kZFYUSvoiwj5O2d41HhSHgXUOpICMj8W6NS-M4IFKQuMQD6axO2EbA5K0JPyE5jrnjsQ36fa7BY4A/s320/Cindis+Toolbox.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My go-to toolbox of methods and approaches used daily in our Neighborhood</td></tr>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">For those of you
needing specifics, here is a list of some of the things that I did:<br /><o:p></o:p></span></div>
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<ul>
<li><span style="font-size: 14pt; text-align: justify; text-indent: -0.25in;"><span style="font-family: "times" , "times new roman" , serif;">Keeping in mind
the threshold, (this means how far ahead we can tell our two sons about
something) I created our normal refrigerator calendar for October showing only
the usual routine for every day for the whole month. I posted it in its normal spot on the
refrigerator. I created another calendar
showing the normal routine, plus I included the actual “airport”, “beach”,
“hotel”, etc. that I intentionally revealed only two days before departure. This allowed the guys to get through their
normal routine for most of the month prior to the trip without perseverating on
what’s to come, say, weeks before. Dad
and I would have needed straight jackets if I had allowed them to know too far
ahead of time—some of you may know what I mean. Giving them details about
something that is coming up sometimes causes behavioral issue due to the
anxiety it may cause, so we wait to tell them about it. (Yes…it’s trickery, but
a parent has to do what a parent has to do.)</span></span></li>
<li><span style="font-size: 14pt; text-indent: -0.25in;"><span style="font-family: "times" , "times new roman" , serif;">The afternoon before
departure, after we had duly informed both boys of our plans via the calendar,
I involved them each in the packing process so that they could more fully
understand what we were doing. This went
amazingly well! They each chose only 1
extra small item to include in their luggage. Jake chose his Ernie stuffed
animal and Joe picked a book. </span></span></li>
<li><span style="font-size: 14pt; text-indent: -0.25in;"><span style="font-family: "times" , "times new roman" , serif;">The day before
departure, I purposefully scheduled myself time alone so that I could put
together all of the detailed picture symbols for use on a visual schedule. I placed them on an “all done” board that we
would use to tell the boys what the first leg of the journey, arrival and
transport to the condo would look like.
I also packaged up additional symbols that I could use on similar “all
done” boards for the 9 days of the vacation.
Here is what the visuals looked like for the travel day:</span></span></li>
</ul>
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<ul>
<li><span style="text-indent: -0.25in;"><span style="font-family: "times new roman" , serif;"><span style="font-size: 14pt;">The night before
departure we watched the DVD “Mister Rogers-Going on an Airplane” one more time,
which was a positive reminder since we had watched it in April prior to our very
first plane ride. After the video was
over, I asked, “Are you ready to ride on an airplane again and go to the
beach?” Both boys answered with a
resounding, “Yeah!!” I, then, presented
the visual schedule that I had put together for the first leg of the trip. This included leaving home (we hired a car to
the airport so this would be a transition from the norm), getting to the
airport and all of the steps that entails, going through security, waiting at
the gate, and finally, getting on the plane.
After we had seen what was going to happen the next day, both boys
jumped up from the couch and headed to bed.
Surprisingly, everyone slept pretty well!</span><span style="font-size: 18.6667px;"><br /></span></span><div style="font-family: "Times New Roman", serif; font-size: 14pt; text-indent: -24px;">
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Departure
day had finally arrived! Our resident Angels, friends and mentors Daniel and
Amanda, arrived at our house early so that everyone could get ready for the day
together. Bags were packed and everyone
was calm; relatively speaking anyway. I verbally went over the visual schedule
again, pointing to each step as it would occur.
There were no grumbles, there was no resistance. The day of truth we had planned so long and hard for was finally upon us.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Everyone
made it through the first part of the process perfectly. We all boarded the plane and got seated. I didn’t want to let out a deep
breath yet. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
the Boeing 777 took off and ascended to its optimal cruising altitude of 30,000
feet, there was a bit of turbulence that would normally cause me to be a bit
jittery. As I glanced over at Jake and then
up at Joe, I saw only smiling faces void of any nervousness or anxiety. It was at that very moment that I realized
the fear that I had was my own. Jake and
Joe had no unearthly idea of what any turbulence might precipitate. They had no reason to worry about something
they had no idea about! <b><i>The
reality</i></b> was that my own fear was a preconceived anticipation of
something formulated in my own imagination!
It was then that I also realized that all of the worries I had lost
sleep over during the previous month were in that same category. I even wondered if Chris and I had allowed
that fear to hold our sons back? They
obviously were ready for this monumental challenge as demonstrated by their
complete success thus far. Even though I
had these thoughts, I continued to hold my breath a bit, pending the rest of
the day. We still had 7-8 hours before
we’d arrive at the condo, after all.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Just
to be on the safe side, I had prepared at length for the, what I thought would
be, exhausting 7-hour flight. Our very
kind friend, Chuck, had helped me load at least 40 full length movies on each of the
boys’ laptops—ya’ know….just in case. We
had portable DVD players, PSPs, iPods, coloring books, snacks and favorite
books. We never needed those
laptops. The time sped by without
incident. Next thing I knew, we were landing.
<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
first sign of any disturbance in Joe, our more sensitive one, occurred when the
plane landed and it was time to deplane.
He quickly jumped up out of his seat positioned at the front of the
plane, and darted toward the exit. Chris
ran after him, and quickly caught up in order to direct him to baggage claim. Joe obviously needed to move his body after a
long 7 hours. So, that’s what we
did. We walked and walked until we
reached the baggage claim. This helped,
but was not enough to get all of those sensory wiggles out of Joe. Joe was kicking me, jumping and biting his hand. We were used to this and knew it meant that
he needed some gross motor movement. Chris
needed to get to the car rental agency in order to pick up our vehicle. He thought he would take Joe with him…I was
afraid that this kind of waiting process might only add to Joe’s
impatience. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Daniel,
Amanda, Jake and I waited with the luggage.
Jake was incredibly content and relaxed.
Before we knew it, Chris and Joe had the rental car and we were on our
way without incident. My temporary fears were abated. Soon after, we all
made our way to the much-anticipated, visually planned, dinner at the
ever-familiar Chili’s. This was a great
way to inject some familiarity into a day that had been filled with so many new
things and multiple transitions. We’d
have plenty of time for trying new things later. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">One
thing that we knew would be an issue, but we didn’t know how we would handle it
specifically, was the 4-hour time change.
By the time we got to dinner, it was about 5:30 Hawaii time, but already
9:30 p.m. home time. The guys usually
took their medication at about 6:45 p.m. home time. We’d had plenty to eat on the plane, so meal
time wasn’t much of an issue, but I suspected, in hindsight of course (as any
good Mother would), that Joe’s “wiggles” at the airport might have been a sign
of the absence of those medications. So,
Chris and I decided during dinner to go ahead and give them their normal
doses. We knew it would take some time
for them to settle into a new time zone, but at this point in the trip, we
really weren’t sure how difficult it would be.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It
had been a long day so far, and everyone was very glad to finally get to our
home base and get settled. I had spent
weeks researching where to stay on Oahu, and we were all so happy with the
choice to stay at a condominium instead of a hotel. We had a full kitchen, 3 bedrooms, 3
bathrooms, a living room, dining room and lanai that overlooked the beach. We would stay at this location again and
again, given the opportunity. The
location was incredibly quiet, uncrowded and very private, giving us all an
extra err of relaxation. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
first night, we were all exhausted, and slept many hours, even beyond our
normal night’s sleep—even the boys! This
was highly unusual, but welcome. The
second night, the boys slept closer to their normal, waking at around 6:00 a.m.
Hawaii time (still, that’s 10 a.m. home time!).
For the remainder of the time, they woke before dawn at around 5:30
a.m., which is more in line with our routine.
Even though I would have loved to get extra sleep during our vacation,
this early wake-up call allowed us to see some pretty incredible sunrises and enjoy
the serene, quiet mornings before the rest of the world woke (trying to see the
positive here). We found it to be more
of an issue to keep them awake in the evenings, but we strived for 7:30 or 8:00
p.m. which became our new routine.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">As
you can imagine, I could talk forever about every detail of this incredible
achievement for our family, but I don’t want to bore you. </span><span style="font-family: "times new roman" , serif; font-size: 18.6667px;">Each of the 9 days we spent in Hawaii included some routine items and usually one new thing. We spent a lot of time at the beach, allowing the boys time to get reacquainted with this sensory meca. We visited several restaurants, drove to the Northshore, did some shopping and took a break to swim in the pool. We found refuge in our home base filled with familiar things like laptops, snacks and relaxing. </span><span style="font-family: "times new roman" , serif; font-size: 14pt;">So, suffice it to say that the return trip (a
night flight) was just about exactly as we planned it. The jet lag has been amazingly minimal for everyone but me, but that I can handle.</span></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYzusulbyADqaP4uLwBFBaDqG_Vi5xtWTmHAW5UOTsb2w1AXXAaVWzkvYPNv9UzKeKNAJzqT61UwtcSjJhIuYTKIqOS-t_ohlyfDZB3otLnnnVlVRGs4kxVL5W9Ui4S3tH6bYXEqkMSA0/s1600/Hawaii+feet.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiYzusulbyADqaP4uLwBFBaDqG_Vi5xtWTmHAW5UOTsb2w1AXXAaVWzkvYPNv9UzKeKNAJzqT61UwtcSjJhIuYTKIqOS-t_ohlyfDZB3otLnnnVlVRGs4kxVL5W9Ui4S3tH6bYXEqkMSA0/s320/Hawaii+feet.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">An Ode to our beloved therapists that taught us all the tools<br />
to make our real-life dreams come true.</td></tr>
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<span style="font-family: "times new roman" , serif; font-size: 14pt;">I
would like to leave you with a few stark realities that we have gleaned from
this new and exciting experience:</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 14pt; text-indent: -0.25in;">We worried,
planned and feared every single detail of this trip even though we desperately
wanted to take it. </span><b style="font-family: "Times New Roman", serif; font-size: 14pt; text-indent: -0.25in;"><i>The reality</i></b><span style="font-family: "times new roman" , serif; font-size: 14pt; text-indent: -0.25in;"> was that Jake
and Joe were ready to do it! I suspect
that our own fears had prevented us from doing it sooner. I am happy that we overplanned the details,
but realize that it is our own fears that hold us back, not real facts. We will
need to work on this in the future (after we are over jet lag).</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 14pt; text-indent: -0.25in;">We have worked
very hard to make our home a place of independence for Jake and Joe, modifying
many things so that they can use and access them independently. Both guys even
know how to do most things independently in “Rocket”, but it’s taken time. </span><b style="font-family: "Times New Roman", serif; font-size: 14pt; text-indent: -0.25in;"><i>In reality</i></b><span style="font-family: "times new roman" , serif; font-size: 14pt; text-indent: -0.25in;">, we underestimated their
ability to transfer these skills to a new place. Everything from the faucet handles to light
switches to door knobs were unfamiliar. The
entry door, elevator and condo door required a key card, which made it
difficult for the guys to move around by themselves. We could see them struggle to use simple
things that we take for granted at home or in “Rocket”. I am so happy we had 9
days to allow the boys to get used to their new environment and begin to feel
comfortable in a new place, but it would take much more time for them to be
proficient. Having had such a positive
experience, this leaves the door wide open for using this condo again in the
future, and perhaps increase their learning.
We’ve spent years teaching them to use things in their world, but it
will take time to adapt that to new places. We still have work to do.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 14pt; text-indent: -0.25in;">One of the
hardest things for a parent of a child (even though our guys are adults, they
are still my children) with a developmental disability is the element of the
unknown. We don’t always know exactly what
sets off our kids into a behavioral episode.
There was a moment in the airport where Joe was kicking me and biting
himself in front of everyone. This is the part where we are exposed to embarrassment
and judgement from strangers—A difficult thing.
When this happens to me, I find that I instantly revert back to that old
feeling of loneliness. That rush of embarrassment and frustration fills me up
and makes me question my purpose for doing something new, even for just a
moment. </span><b style="font-family: "Times New Roman", serif; font-size: 14pt; text-indent: -0.25in;"><i>In reality</i></b><span style="font-family: "times new roman" , serif; font-size: 14pt; text-indent: -0.25in;">, I was never
alone. There were those people who were
actually Angels right there with me, like Daniel and Amanda, or the incredible
United Flight Attendants, or one of the many kind Hawaiian people; the
bartender, the Cashier at Walmart, or the staff at the condo. There were those who were there with me in
spirit as represented by, say, the super cool luggage tag from my friend Cara;
or the beautiful dress gifted to me specifically for this trip from my friend
Lisa or my handmade bag from my friend Angie. We had the spirit of our
incredible Doctors and therapists that had given us all of the tools we needed
to succeed. We had the comforting knowledge
that our friends and neighbors were caring for our dog, Lulu so that we could
have this incredible trip. We had the
kind, caring wishes of the many, many people that helped us get to this point,
only to want us to succeed. These are
the things that continue to give me strength to try these hard things.</span></div>
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<span style="font-family: "times new roman" , serif; font-size: 14pt;">We
knew all along that this special trip would be hard work and emotionally
hard. </span><b style="font-family: "Times New Roman", serif; font-size: 14pt;"><i>The reality</i></b><span style="font-family: "times new roman" , serif; font-size: 14pt;"> was that it
was so worth it. </span><b style="font-family: "Times New Roman", serif; font-size: 14pt;"><i>The reality</i></b><span style="font-family: "times new roman" , serif; font-size: 14pt;"> was that we
did it successfully and made memories that will last a lifetime. Number 49...check! The amount of proud that Chris and I feel is simply inexplicable and surmountable. Our perspective has grown beyond our wildest
dreams to see that much more is possible.
Like all things that we have discovered on this fragile X journey, our
sons have taught us huge lessons. We
will try to listen closer and be open to that learning. </span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 18.6667px;">To learn more about Cindi Rogers visit: <a href="http://mrsrogersworld.com/" target="_blank">www.mrsrogersworld.com</a></span></span></div>
Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com2tag:blogger.com,1999:blog-6537170817799988298.post-9203568964970125362016-08-28T09:03:00.000-07:002016-08-28T10:04:00.203-07:00A Difficult Teachable Moment for a Parent of a Disabled Son<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRRtI8hyphenhyphenZP2E6vjPaxydsp1I86Ws85IBRUknyftsR35vEz_PCuJoB9k0ECaqWa50BCv6z3eRWDsXl0le8HLw25KUxmViGK-g5734XGTXzXJ3iXgpn_u09H9u1xUBf8nivjF5IOryVydIo/s1600/hug.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="271" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjRRtI8hyphenhyphenZP2E6vjPaxydsp1I86Ws85IBRUknyftsR35vEz_PCuJoB9k0ECaqWa50BCv6z3eRWDsXl0le8HLw25KUxmViGK-g5734XGTXzXJ3iXgpn_u09H9u1xUBf8nivjF5IOryVydIo/s320/hug.jpg" width="320" /></a></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">In 1789, Benjamin Franklin wrote that, “Our new Constitution is now established, and has an appearance that promises permanency; but in this world nothing can be said to be certain, except death and taxes.” Today it is often condensed to just say that there is nothing certain in life except death and taxes. If this is true, why do we not spend way more time and energy on teaching those things that are the two guarantees in life? I mean…if we know these things are coming, then why not be prepared, especially when it comes to death? We are all going to experience it…there is no way around it. As humans, we are all going to die.</span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">When it comes to death, being prepared can be a bit tricky if you ask me. There is no real way to “practice” it for ourselves. When we experience the death of someone or something near and dear to us, we are often so emotional that we don’t find time to think about the stages or what we can learn from it. Having two adult sons with a developmental disability called fragile X syndrome has brought all of this to the surface for my husband and me. </span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">Fragile X syndrome has caused a whole lot of difficult-to-understand-scientific-garble-talk crap (but if you really want to know more, go to <a href="http://www.fragilex.org/">www.fragilex.org</a>) to happen in our sons’ brains. Suffice it to say that they operate at about the cognitive age of 5 year olds, with a vocabulary of a 2-year old. So, how do you teach someone in a big person’s body about something so difficult, and at the educational age of that? Very. Carefully.</span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">Even at the ages of 25 and 27, they have not really experienced a great loss of someone very close to them. Nor have they been allowed to really understand what losing someone means. When they were 2 and 4 years old, their Grandmother passed away. It was very traumatic for my husband, Chris, and I, but the boys were too young to understand. Even at that age, we memorized saying, “Grandma went to Heaven”, just to provide some point of reference if we were asked (which we weren’t because they couldn’t speak at this age). I think the whole thing was more of a coping mechanism for us than them. </span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">A few years later, we lost our Boxer, “Bud”, and, again, it was somewhat transparent to them since we had already acquired a new dog named, “Elmo”. </span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">Elmo was a one-of-a-kind dog that we had trained to eventually become our youngest son, Joe’s, companion dog. This is the dog that they both grew up with from a very young age. Elmo was the one that they formed a tight bond with. When he died in April of 2012, this was the first real devastating loss that either of the boys had experienced up to that time. There was a bit of lead-up to his passing since he was sick, which gave Chris and I time to think about how we should help the boys to understand this loss once it happened. </span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">When Elmo was sick, we made sure we used words like, “sick” on a daily basis, as well as, “doctor” and “sad”. We weren’t sure what we were doing, really, but we had to try something. We desperately wanted the boys to be able to experience loss even though it would be really hard. Hard because seeing your children sad is a difficult thing for a parent. Hard because, we ourselves were sad, too. Hard because sometimes the boys are feeling something that they themselves do not understand. But, we knew the only way they could grow to understand it would be to experience it. There is no way we could teach emotions through a book or lesson. This is the part of parenting that is get-down-in-the-trenches hard.</span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">We had an idea. We thought we could use something familiar to help them understand the very obscure concept of loss, as well as the feelings we were all going through…..Mister Rogers Neighborhood. Our oldest son, Jake, has always adored Mister Rogers, and, in fact, was obsessed (still is) with all things “Fred”. It just so happens that Mister Rogers has a video all about death in an episode called, <i>“The Death of a Goldfish”</i>. He also has a book entitled, <i>When a Pet Dies</i>. We had our resources, now we just needed to muster the courage and swallow back our own tears in order to begin. </span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">The night that Elmo died, we clung to our normal routine and when it was time for “couch”, we decided to make our move. I spoke in a very calm voice as I swallowed back my own tears, but said that Elmo had died that day and that he would not be with us anymore in the house. He would go to a new place called Heaven and he would run free and not be sick anymore (how do you really explain Heaven????). There was no reaction from the boys. Then I said that we would watch this Mister Rogers video, and there was elation from Jake because we didn’t normally watch a video at this time in our routine. We all watched the episode together and listened carefully as Fred explained that it was ok to feel sad. After the video ended, Chris said that he felt sad and that Mommy felt sad, too, without Elmo here. I said that it was ok to feel sad and that sometimes when I was sad, I cried..then, as if right on queue, my own tears flowed. Joe spontaneously broke into a whale, alligator tears and all. I wasn’t sure if it was because he was sympathetic to my tears, or if he was, in fact, feeling sad. Then, Jake screamed and hit his leg with his fist. I thought how appropriate this all was, but wondered if they really understood what was happening. We might never know. We know they both definitely have feelings, but in our 27 years of experience, we also know that sometimes the feelings can be confused or misdirected. Teaching feelings has been one of the most difficult things we have had to approach as parents. We continued to talk about how crying was appropriate when we felt sad and when we missed someone. Then, we moved right back into the comfortable routine, switched on “Jeopardy”, and sailed through the rest of the evening.</span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">As the months after Elmo’s death passed, we would often hear them both ask after Elmo, and we would respond with, “Elmo is in Heaven, remember?” To this day, Joe, especially, asks for Elmo, leaving us to wonder if it might have been easier to name our current dog, “Lulu” after him. We are never sure if it’s just the habit of knowing that name, or if he really wonders about Elmo. Again, we may never know. We continue to wonder how we could improve on their understanding of death and loss. </span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">Just as that ole’ guarantee promises, the situation has again come to the surface.</span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">This week, we lost a dear friend of the family, Jack. We knew Jack for some years and he spent quite a lot of time at our house. He lived about an hour south of us, but a visit required him to drive over something called The Palmer Divide, which is synonymous for extreme weather, often making it treacherous, especially in the wintertime. So, when needed, he would stay with us and wait out the weather. Then, Jack got sick. As Jack’s medical situation progressed, he would travel to get treatment in our area, and we would gladly offer our home for his comfort. It was a win-win because we all loved him dearly. As time passed and the relationship between he and the boys solidified, Jake would ask for “Jack” on a regular basis, wondering when he would be visiting once again. If I knew, I would tell him, but if not, I would always say, “Jack is at home today”. Each time Jack would visit and then depart, hugs would ensue from both boys, which says a lot because they are not naturally drawn to hugs from anyone but Chris and I.</span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">Jack grew sicker and sicker, and weaker and weaker. The visits were more and more frequent. His spirit did not dwindle much, always offering a “high-5” or hug to the guys. Last week, he had his sister drive him up when he came to see us and chat about things that were important to him and what the plan for his upcoming next step would be. We aren’t family, but he often referred to us as such, so we talked about many very deep subjects, including how he wanted to go to his final resting place. It was a sad time for our family and for Jack. </span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">During this illness, we, again, did not do a stellar job of communicating with the boys about how sick Jack was, or involve them in the real adult conversations. They were just there forming a bond with Jack and enjoying his company. We now see that we could have done more to prepare Jake and Joe, but we were too busy having hope for a positive outcome, and not thinking about that inevitable loss. How could we face the idea of loss when we were busy clinging to hope with Jack? That’s a tough question. So, now we are faced with the task of how to allow Jake and Joe to grow through this very sad occurrence, and teach them to be one step closer to understanding death and loss. Is it wrong to want to use this situation as a teachable moment? I don’t think so. </span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">Sometime this week we are planning to have Jake and Joe attend their very first funeral and graveside service. After I gather all of the information and facts about what is going to happen, I will do my very best to prepare them for this. It’s important. We need to find a way to say goodbye to a friend while we are here to support Jake and Joe through it…on our own terms. It promises to be a difficult teachable moment.</span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">This brings to the surface a very difficult subject for us as parents of two children with significant developmental delays. Our own death—our own mortality. Our sons will always require some kind of supervised care. Someone besides us will be in charge of this day-to-day task. We have done all of the planning; the will, the trust, the life insurance, etc., in order to prepare for our own replacement. But, what about preparing our sons for the loss of our presence? Is this something that we can prepare them for? Since we have no plans to send them both away to another living situation, we cannot do that kind of pre-transitional training. I think we will need to depend on situational teaching involving people in our lifetime where we can use the opportunity to model what is going to happen. This is in sync with many of the things that we have successfully taught them in their 25 and 27 years respectively, ……and have faith. Faith that they will be ok. Faith that they will grow to understand. Faith that everything will be ok…with or without us. </span></span><br />
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;"><i>“The connections we make in the course of a life--maybe that's what heaven is.” </i></span></span><br />
<span style="font-family: "times new roman" , serif;"><span style="font-size: 21.3333px;">― Fred Rogers</span></span><br />
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<span style="font-size: 16.0pt; line-height: 115%;"><b>To learn more about Cindi Rogers visit <a href="http://www.mrsrogersworld.com/">www.mrsrogersworld.com</a></b></span></h4>
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Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com0tag:blogger.com,1999:blog-6537170817799988298.post-24069526961742433402016-04-18T12:29:00.000-07:002016-04-18T13:21:44.856-07:00The Worries of a Parent Never Cease: Autism & Fragile X<div class="MsoNormal" style="margin-bottom: 0.0001pt;">
<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">One
of my favorite sayings was that 'worry is never productive'. I’ve said it many times over, say, the past
15 years. My head knows this, but in
reality my heart is missing the message entirely. Today is the day that I abstain from saying
this ever again….mostly because it’s not always true for me. Worry, in fact, HAS been productive for
me. But, does it ever cease when you
have two adult sons born with fragile X syndrome, and later also diagnosed with
Autism?<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Since
April is National Autism Month, I think it is important to mention that Fragile
X Syndrome is the single most common inherited gene form of Autism and accounts
for approximately 2-3% of Autism cases (read the full article here: </span><a href="http://fragilex.org/2014/support-and-resources/fragile-x-syndrome-and-autism-spectrum-disorder-similarities-and-differences/"><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">http://fragilex.org/2014/support-and-resources/fragile-x-syndrome-and-autism-spectrum-disorder-similarities-and-differences/</span></a><span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">).<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Speaking
from my own perspective, worry for my husband and I began long before our first
son was ever born. We worried about
whether we would we love him/her enough?
Would we be able to provide all they needed until they could provide for
themselves? Would they have all 10
fingers and toes? I believe these
worries are fairly common when it comes to parenting….but that’s where our
common thread with parents of typical kids ends.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Once
our oldest son, Jake, was diagnosed with fragile X syndrome at the age of 2 ½
(coincidentally our youngest was just 3 days old at the time and we were told
there was an 80% chance he, too, would have it—which he subsequently did) with
the most common form of genetically passed developmental disability, our
worries shifted into overdrive. Not that
we hadn’t had any worries until the age of 2 ½, of course! But, now the worries were pretty rampant due
to the complexity of unknown factors. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">At
the age of 2 ½, Jake was not saying any words.
One of our central worries at that age was whether he would ever speak
at all! He had barely learned to walk by
this age, too, which steered our worries toward the unbearable thoughts of
physical disability. Day or night, we
worried and fretted over things we had no idea how to solve or even which way
to shift those worries into something productive. Wrinkles began to appear in places they had
never been before. Sleep became less and
less as we lie awake after hitting the pillow exhausted from our day’s work and
worry. We ran from one expert to another
trying to dispel one worry or another.
Sometimes we got answers, and sometimes we just had to wait and
see. This caused further worry. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">These
symptomatic worries shifted to more outward worries as the boys got older. Behaviors were more evident and would often
cause stares and embarrassment for my husband and myself. Both boys would flap their hands in response
to joy or overwhelm. They would make
loud noises when they were happy or unhappy.
Stares and looks of disapproval shot our way. Then, we worried about what others might
think of us….might think of our parenting skills….might conclude in their own
judgement of our sons. Our own energy
and demeanor would shift, causing us to often exit the store, restaurant or
museum at a brisk pace. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Fast
forward to today….both of our sons have been diagnosed with a developmental
disability for 25 years. Yes, they still have
challenges, and yes, we still worry. Our worries now center around tough subjects like, what will happen to them when we are gone? Will there be enough money to take care of their needs <i>forever</i>? Who will care for them and can we trust them? All really big, difficult, scary worries.</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We’ve
been able to affect the outcome of many of our past worries like whether or not
our sons could work at a job (the answer is yes); whether they will ever have
friends (also a yes); whether they will ever be able to sit and eat a meal at a
restaurant (this has become a “hobby”!); whether they will in fact ever speak
(they each say about 100 words); will they ever successfully be able to travel
and enjoy a family vacation. That’s the
one we’ve worked on for years….family vacations. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">At a young age, we wondered if we’d even be able to leave the house without one of
them melting down and spoiling the whole outing. As parents, we knew we didn’t want to spend
every last minute staring at the walls of our home, but how could we manage a
vacation with two sons having all of the needs and behaviors ours did?! We needed to find a way to make the boys’
world's bigger! We needed to be able to
teach them how to tolerate the world around them so that they could see more
than just our own wonderful community.
That’s been a long-term goal for our family. I’ve blogged many times about it, and I’ve
even written a book telling some of the stories about our adventures, so it is
obviously important.</span><span style="font-family: "times new roman" , serif; font-size: 14pt;"><br />(Click here for information on my book: </span><a href="http://www.amazon.com/Becoming-Mrs-Rogers-Cindi/dp/1497373409/ref=cm_cr_arp_d_product_top?ie=UTF8" style="font-family: 'Times New Roman', serif; font-size: 14pt;" target="_blank">http://www.amazon.com/Becoming-Mrs-Rogers-Cindi/dp/1497373409/ref=cm_cr_arp_d_product_top?ie=UTF8</a><span style="font-family: "times new roman" , serif; font-size: 14pt;">)</span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">It’s
taken many years, but, having visited all 48 of the lower U.S. States via our
RV, we have come to a turning point, and a momentous time of worry….we’ve made
a goal to visit Hawaii in November, 2016.
We’ve arrived at step 3 in the master plan by doing our first plane ride
with the boys on our way to reaching the island of Oahu. If you want to catch up and read about the
first 2 steps click here:<br /><a href="http://mrsrogersfxneighborhood.blogspot.com/2016/01/its-lofty-goal.html" target="_blank">http://mrsrogersfxneighborhood.blogspot.com/2016/01/its-lofty-goal.html</a><o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
obtained TSA Pre Check passes a few months back, then we arranged a practice
session at our local airport. Those
steps went well. Then, it was time for
our first actual flight. We chose
Phoenix as our destination because we have family there and this helped fill
the idea of providing a motivation for the guys. As a planner myself, I booked the tickets
back in January…ya’ know….just to give us more time to worry, and worry we
did. I know I sure did! <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 14pt;">Having </span><span style="font-size: 18.6667px;">traveled</span><span style="font-size: 14pt;"> quite a bit myself, I am keenly aware of every step a person has to
go through in order to board a plane, ride in a plane, depart on a plane and get
logistically situated in a new environment.
I consciously broken down each and every step in my head in order to
visualize my two sons doing them. Then,
I worried about the parts that I could not control, and there were lots of
them. This very fact is the thing that
kept me awake for the past 3 months. <o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">My
brain started out worrying about the chaos that takes place when one goes through
security screenings. Would my guys be
able to tolerate just standing in the excruciatingly long line? Would they be able to tolerate taking their
shoes off if asked? What if they were
asked something? They likely would not
be able to answer due to their cognitive disability as well as their lack of
language. What if they got upset during
the screening? We would, of course, be
there with them, but what if we could not bring them back from the depths of a
meltdown? My standard course of action
is to create a visual schedule showing the specific steps that would happen
based solely on what I knew to be true, minus the stuff that I had no idea that
could happen. My brain didn’t even
reason with the fact that we had already gone through a successful practice
session…brains don’t work that way when you are the Mother of a child with a
disability. Insert worry, subtract
reason.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Having
never flown before in their life, I worried that our sons would not tolerate
the pressurization that occurred during takeoff and landing of the
airplane. What if their ears had some
kind of reaction to this type of sensation?
What if we were already in the air and they began to scream
uncontrollably so that my husband or myself could not calm them? This was a very realistic worry. I attempted to push it out of my mind late at
night when I was trying to fall asleep and all my brain wanted to do was think
about these things. That, and all of the
logistical things that I knew I had to think about in order to make any trip
successful. We’d pack DVD players, PSPs,
Ipods, DVDs, snacks, sick bags (just in case), chargers, battery back-ups,
chewing gum, all the plugs to charge everything, their favorite clothing,
essential oils for calming, medications, passports, boarding passes and on and
on. The list grew and grew. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">The
day finally arrived for our 1 hour 50 minute flight from Denver to
Phoenix. The visual calendar said
so. I did what worked for us and
revealed the “big secret” just the night before so as not to encite anxiety
over time. We went over the visual
schedule for the day together giving a verbal word for each visual photo.
Everyone seemed relaxed and prepared. I
tried to squelch any worries from rising to the surface and appearing on my
face. The time for worrying was past and
it was time to reap what we had sewn. <o:p></o:p></span></div>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdqEaMwbgmwW2mIrpbW0FUjOWqz3XG38mvrmatevE_dIhr-wTVakyiJCH2WO1cGusobd_ho59FCMLl063h-aIGFRmkJrVxAvg6oCcEGOt0plt6uz5r7odk-srrXKzs4t9O_vyUdlENPIQ/s1600/trip+pic+sims.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjdqEaMwbgmwW2mIrpbW0FUjOWqz3XG38mvrmatevE_dIhr-wTVakyiJCH2WO1cGusobd_ho59FCMLl063h-aIGFRmkJrVxAvg6oCcEGOt0plt6uz5r7odk-srrXKzs4t9O_vyUdlENPIQ/s320/trip+pic+sims.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Three days of visuals prepared and waiting</td></tr>
</tbody></table>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
persuaded both guys to practice pulling their own little suitcases around
before we left the house. They would be
expected to help lug the cases with their weighted blankets in them, for
sure. Each one loaded their own bag into the back of
the car, loaded themselves and off we went.
Uncharacteristically, anxiety seemed to be missing in the air of the
family. We parked and headed into the
airport. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
could see the traces of our previous practice as each of our guys marched
confidently toward the security check point.
They appeared to know what to do by handing the agent their passports
and boarding passes. So far, so
good. We stepped into a line and awaited
our security screen. I spoke to a
gentleman and asked for assistance, which they provided. Overall, everything went pretty
smoothly. We were detained a little bit
by the odd perspective that the weighted blankets projected on the security
xray screen. (note to self: check these items in the future).<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">We
proceeded to the elevator instead of the escalator because I had already
worried and resolved that it would be too difficult for the guys to negotiate
the bags while on an escalator (yay brain!).
We boarded the train to the concourse…..no anxiety yet! We all walked together to the gate and found
seats. There were quite a few other
passengers waiting for the flight, even though it was over an hour from
departure. We passed the time by
listening to DVDs, ipods and having a snack.
At one point, Joe, our youngest, seemed to need some movement, so hubby
took him for a walk to the restroom. The
time to board finally arrived, and we took the opportunity to board with those
that “need a little extra time”. We
took our seats and buckled in…just as we had practiced (more thanks to Mister Rogers!). <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">I
sat with Jake and Dad sat with Joe in front of us, two-by-two. A little flicker of worry passed through my
head as I knew the “unknown” part was upon us.
How would the guys do during takeoff?
I took a deep breath in and let it out.
I made sure they each had a piece of gum and their headphones on. I rested my head back on the headrest and
sighed. I heard no sounds. I felt no worry. Suddenly, I realized that the time had passed
without incident. In fact, the 1 hour
and 40 minutes (we had a tail wind) passed so quickly, I didn’t even have time
to read my book that I had brought along! As we descended into Phoenix, Joe
shouted, “Look! The city!” I swallowed
back tears. Worry averted.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , serif;"><span style="font-size: 14pt;">We
all enjoyed family for two days, and then it was time to worry about heading
back home. On the morning of our
scheduled flight, I produced the visual schedule that I had prepared for just
this occasion. I pointed through the
steps, providing a verbal reinforcing word for each visual step, including “go
to airport”, “get on plane”, “buckle </span><span style="font-size: 18.6667px;">seat belt</span><span style="font-size: 14pt;">”, and “home”. Neither one of the boys produced any outward
signs of anxiety over any of these previously learned steps. This was the sign I had been waiting for to
prove that the words “airport” and “airplane” lacked the negative connotation
of a past negative experience. We had
done it. They were ready. Everything we had done to this point produced
only a positive outcome….I could subtract many steps from the worry
list in my head. I needed only worry about the
things that would become new as we move forward. What a
relief. What an utter gargantuan relief!!!<o:p></o:p></span></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Of
course, we made it home in one happy piece.
Everyone survived…even Mom and Dad.
What did we learn? Well, the same
thing we always learn! <i><u>Somehow, things
we worry so much about, work out in the end.</u></i>
But, the fact that I/we thought through each step, each scenario, each
anticipated morsel, helped us plan and methodically approach this HUGE step in
our ultimate goal and make it doable for our sons. <o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Will
we get to Hawaii? We will continue to
push forward…one worry at a time. It’s a
huge, long flight to Hawaii….7 hours!
That’s huge compared to the 1 hour 50 minute flight. Oh, and now I am worried because a few days
ago when I checked flights from Denver to Hawaii, the price had doubled since I
checked in January. I am worried because
it may be out of our price-range. My worries will carry on.<o:p></o:p></span></div>
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<span style="font-family: "times new roman" , "serif"; font-size: 14.0pt;">Sometimes I just have to cling to faith and let go of worries....<br /><br /><i><b>"If we expect our children to always grow smoothly and steadily and happily, then we're going to worry a lot more than if we are comfortable with the fact that human growth is full of slides backward as well as leaps forward and is sure to include times of withdrawal, opposition, and anger; just as it encompasses tears as well as laughter."~~Fred Rogers</b></i><o:p></o:p></span></div>
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<span style="background-color: #eeeeee;"><span style="color: #333333; font-family: "calibri" , sans-serif; font-size: 14pt;">To learn more about fragile X syndrome please visit<a href="https://www.blogger.com/goog_2140655620" style="color: #993322; text-decoration: none;"> </a></span><span style="color: #333333; font-family: "calibri" , sans-serif; font-size: 18.6667px;"><a href="https://fragilex.org/" style="color: #993322; text-decoration: none;">https://fragilex.org/</a><br /><span style="font-size: 14pt;">To learn more about Cindi Rogers go to</span><a href="http://www.mrsrogersworld.com/" style="color: #993322; font-size: 14pt; text-decoration: none;" target="_blank"> www.mrsrogersworld.com</a><span style="font-size: 14pt;"> </span></span></span></div>
Mrs. Rogers Neighborhoodhttp://www.blogger.com/profile/09030739482496784093noreply@blogger.com2