Sunday, August 28, 2016

A Difficult Teachable Moment for a Parent of a Disabled Son

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.

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.  

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 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.

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.  

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”.  

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.  

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.

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, “The Death of a Goldfish”.  He also has a book entitled, When a Pet Dies. We had our resources, now we just needed to muster the courage and swallow back our own tears in order to begin.  

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.

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.   
Just as that ole’ guarantee promises, the situation has again come to the surface.

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.

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.  

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.  

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.

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.  

“The connections we make in the course of a life--maybe that's what heaven is.” 
― Fred Rogers

To learn more about Cindi Rogers visit

Monday, April 18, 2016

The Worries of a Parent Never Cease: Autism & Fragile X

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?

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:

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.

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. 

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. 

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. 

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 forever?  Who will care for them and can we trust them?  All really big, difficult, scary worries.

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. 

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.
(Click here for information on my book:

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:

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! 

Having traveled 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. 

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.

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. 

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. 

Three days of visuals prepared and waiting

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. 

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).

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… 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!). 

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.

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 seat belt”, 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!!!

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!  Somehow, things we worry so much about, work out in the end.  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. 

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.

Sometimes I just have to cling to faith and let go of worries....

"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

To learn more about fragile X syndrome please visit
To learn more about Cindi Rogers go to 

Tuesday, March 8, 2016

With Gratitude to Mister Rogers

Click here to read "Part 1" if you need to catch up:

I often wonder if Fred Rogers, also known by his adoring fans as Mister Rogers of Mister Rogers Neighborhood, knew the long-reaching impact he would have on people long after his death in 2003?  The impact he’s had on our family alone would, hopefully, bring a smile to his face and a feeling of great pride.

When they were very young, our two sons would watch intently as Mister Rogers would enter his television home, take off his jacket and replace it with a sweater, zip up that sweater, and change into his sneakers to welcome his neighbors into his realm.  Both would sit or lie on their stomachs, all cozy in their footed pajamas, rarely taking their eyes off of our old console television set.  For our oldest son, now 27, it was a long-term relationship that still continues today.  It may seem strange to think that a 20-something-year-old would still love Mister Rogers, but not for him.  Yes, we do share a surname with Mister Rogers, but sadly, we are not related.  Our younger son, who is now 25, and has also intermittently shared his brother’s love of all things Mister Rogers.  You see, both were born with a genetic developmental disability called fragile X syndrome, and an inherent tendency toward familiar, comforting and repetitious.  This love has come in quite handy many times!  We often use books or videos from Mister Rogers Neighborhood to help us navigate some challenging situations in our own family.  Some might think this a bit old-fashioned or remedial, but it is both necessary and extremely helpful!

The most recent situation to warrant Fred’s help is a doozey.  We are embarking on new territory for our family—teaching our sons how to fly on an airplane for the first time.  Yes….yes….we are kicking ourselves for having never done it before now, but we spent the past 21 years enjoying the sights of the U.S. via our RV, lovingly named “Rocket”.  “Rocket” has taken us to all of the lower 48 states in our effort to help make our sons’ worlds bigger.  In fact, we’ve even been to the home of Mister Rogers Neighborhood in Pittsburgh, PA, four times!  We’ve grown our collective tolerance of Disneyland and Disneyworld, which in itself was no easy task.  We’ve savored many memorable moments visiting other families affected by fragile X syndrome across our great land—something we could never replace.  But, now it’s time for a much bigger feat…..adding Hawaii to our tally.

I blogged about this goal when we set it in January, 2016, so feel free to catch up by reading here:

It's important to note that our sons, although in their 20's, have NEVER flown before.  This warrants a full 11 months of preparation in order to successfully fly 7 hours to Hawaii!

The first step was to start calling and e-mailing in an attempt to gather the attention of folks that could help me through the steps that we felt would be necessary to begin this journey (pardon the pun).  My idea was to expose our sons to a practice session at the airport before we would ever attempt to board a plane and fly.  This is what my analyzing mind told me.....but, after three weeks of calling people and no progress, I decided to make a day trip to the Denver airport (DIA).  I suspected that it would be more difficult to say “no” to my face than during a phone call and I was right!  Thankfully, I wore my walking shoes for this one! 

I finally found the offices of DIA and spewed out my story to the first person that would listen.  The nice lady behind the counter picked up the phone, relayed my message to someone on the other end of the line and handed me the receiver.  As my heart pounded outside of my chest, I explained my idea for making a successful first airport experience.  Lorie, a United Angel, seemed unfettered as she took me under her wing.  I explained in so many words that, based on my 24-plus years of experience with my sons, I felt a perfect scenario would be to allow them to go through a full-on practice session at the airport prior to any kind of “live” flight.  Lorie said, “No problem!  Just let me know what date you’d like to do it, and I will prepare a Designated Needs Pass for all of you.”  I jotted down her phone number and e-mail address for use as soon as possible. I had never heard of a Designated Needs Pass, but it sounded like just what we needed!

I prepared the needed information that Lorie requested, and we set a date for our first practice….Friday, March 4th, 2016.  In the meantime, I followed the advice of many other helpful families in the fragile X world, and we applied for and made an appointment for the TSA Precheck passes.  This in itself was no cake walk.  I completed the applications online prior to setting an appointment to get fingerprints.  On Friday, February 26th, we loaded all of us, including our Angels (and the boys’ mentors), Daniel and Amanda, into the car and we set off to the offices of TSA to complete the process.  The TSA passes would mainly help us as we actually ventured through security to a flight, so we wanted to have those available, especially for Hawaii, our long-term goal.  I was a bit nervous about whether our youngest son, Joe, who has many sensory issues still today, would be able to cooperate with the whole fingerprinting process.  As was routine for me, I prepared a visual schedule for the days’ activities to the best of my ability, which helps both of our sons to know what is going to happen, how long it will last and when they will be finished.  That was easy.  When it became Joe’s turn to place his thumbs (both together) on the small glass panel, Daniel jumped into action just as any friend would do.  Joe trusts Daniel and this trust continued as each hand, all four fingers together, needed to be pressed firmly on the glass surface.  When it was Jake’s turn, Amanda guided him with her calm resolution.  After a relatively short time, the process was complete on all six of us.  Step 1—SUCCESS!!

As the time approached for the actual live practice at the airport, I confirmed details, prepared our visual schedule and kept my lip zipped so as not to generate any anxiety over the unknown, new experience.  Anxiety has always been our nemesis, and keeping it at bay would be the key to making the airport experience successful.  I have found that any time we associate a positive experience for any one word, such as “airport”, then future associations will be successful as well.  If it goes in the opposite direction, we tend to have the opposite outcome.

I asked myself how I could help the guys visualize what we were going to do with no real point of reference from previous experiences?  Videos are a powerful way that I have been able to relay information to them in the past, I thought, so why not now?  I viewed many videos on Youtube, but nothing really felt detailed enough.  Then, I thought about our beloved Mister Rogers.  Did he have a dvd that talked about flying or the airport, I thought?  Of course he did.  AND, of course we happened to have a dvd in our sons personal dvd library—duplicate copies, no doubt.  It’s no wonder since Jake spends just about every dime he earns buying Mister Rogers Neighborhood dvds. 

I popped the dvd into my computer and watched every moment as Fred calmly exits his television home and goes to the airport.  He says, “Would you like to visit an airplane with me?”  Of course we would.  The camera follows him as he approaches the airline gate counter, goes through the jet way door and down the long hallway, mentioning how long it is, and onto the airplane.  Fred visits with the pilot and then makes his way to the coach of the plane and into the capable hands of the Flight Attendant.  She helps him find a comfortable seat, buckle his seatbelt, recline his seat, put the tray table down and even gets him a small pillow and blanket to “help him feel comfortable”.  Then, he unbuckles his seatbelt, stands and heads back to the bathroom (brilliant!).  He senses his usual need to ease any child’s fears by flushing one simple little square of toilet tissue down the toilet, washes his hands and directs his viewers to the trash bin.  I found myself nodding my head as I realized how important such simple logistical details are to my own situation.  Fred and the Flight Attendant head to the galley where she shows him the boxed lunch or breakfast that any passenger might eat while on a flight.  All very familiar and comforting details.  Fred thanks her, shakes her hand and heads back up the jet way and into the terminal. The scene fades back to him comfortably sitting in his television home.  I breathed a huge sigh of relief.  Fred has provided me a perfect video model to use in our time of need.  How thankful I am that he had such foresight that could be used in many of the real life situations that we face still today. 

On Thursday night, while sitting on the couch in full relaxed mode, we all viewed Mister Rogers Neighborhood: Going on an Airplane by Fred Rogers.  I could feel the sense of wonder and curiosity.  Both boys were smiling widely.   When asked if they wanted to visit an airplane like Mister Rogers, both replied in a resounding, “Yeah!”  The stage was set.  The plans were made.  Now, for a good night’s sleep.  My own nerves were a bit on edge, but I knew I had to keep them in-check so that I could be both inwardly and outwardly calm the next day.  Chris, my husband, and I have a pact to practice calm whenever we can…..sometimes it is not humanly possible.  It HAD to be today.

Lorie had arranged for Heather, another United Angel, to meet us at a designated spot in the airport, which she did.  She was very calm and at ease, which allowed all of us to proceed like visiting an airplane was going to just be a fun activity.  The first step was to be getting through TSA security.  Surprisingly, it was quite crowded and I wondered if both guys would have the patience to make it through.  I didn’t let on that I was uncertain.  We had Heather go first, then Daniel, then Joe, our youngest, Chris, Amanda, Jake and finally, me.  I was reminded that the Mister Rogers video was pre-9/11 and did not include any details about going through the security process.  But, we had the visual schedule to help, and a pocket full of hope besides.

Despite the crowds, the lines, and the confusion of the TSA process, we all made it through completely unscathed.  As we headed for the train, I breathed a sigh of relief over what I had been so worried about.  I also made a mental note to myself that we would need to practice the process of the screening tube (ya’ know..the tube where you stand inside, line up your feet and a whoosh, whoosh thing goes around you?) at home prior to any kind of flight.  This process is obscure and unclear to someone with Jake and Joe’s disability. 

Next, we boarded the DIA train and headed for the concourse.  The train was fast and there were, thankfully, places to sit down, to help make the ride smooth.  Up the escalator to the gates we went, following Miss Heather the whole way.  There were glances back towards me from calm, smiling faces, as we stepped onto the moving walkway that glided us past several gates.  Joe loved the moving walkway, but Jake proved to be a bit unsteady as he grabbed elbows. 

Heather guided us to the gate and pointed us toward some seats, as we observed passengers still departing the plane that we would get to visit.  There was no hesitation from anyone.  We calmly sat down and waited.  I realized that having to wait a little bit was actually a good thing, as any flight we would actually take would mimic this same process.  Everyone was quiet and observant, but not anxious at all.  Joe even got up and looked out the window, exclaiming, “Airplane!”

When everyone but the crew of the airplane had disembarked, we were told we could proceed. Heather reminded everyone to present their Designated Needs Passes, which we each handed to the Flight Attendant to scan.  I watched with a little bit of uncertainty as we approached the jet way.  This was the part that I had lost sleep over, knowing that it’s a bit closed in and the end can be somewhat visually obscure.  Then, I realized that Fred had also walked a long jet way onto the airplane he visited, which gave the guys a point of reference.  I echoed Fred’s words that he used in the video. “Wow, this is a long hallway!”, I said loud enough to be heard by even Joe who was quite a ways ahead of me.  On everyone went without even a hiccup.

Jake and Joe went right onto the plane, found a seat and sat down; without hesitation, without anxiety, without fear.  It was simply amazing.  They each found their seatbelts and clicked them tightly.  It was as if they were ready for take-off.  Chris and I beamed with joy.  Amanda and Daniel sat next to the guys and savored the moment, too.  We sat for a good five minutes while we chatted with the Pilot who had peeked out of the cockpit to see who had boarded.  

Then, he asked if anyone would like to see the cockpit.  Joe seemed uninterested, and was ready to exit, so we sent him and Daniel back up the jet way.  Chris and Amanda were excited to see the cockpit, so I guided Jake to the exit.  I was beaming with peace and relief. 

They did it.  It was a success.  There were zero negative connotations attached to the word, “Airplane” or “Airport”.  These are important things in our neighborhood!  It means that we can use these words again in the future without anxiety from either of the guys, and use them for a purpose, a goal…...or to simply make their world bigger.  I think we have the tools to move to step 2.  Angels are all around us.

“While some challenges our children face may make us anxious, they also present us with one of the great opportunities of parenting—the chance to resolve these lingering anxieties of our own.  That’s why I often say that ‘children offer us another chance to grow’. Going through an experience with your child that was once frightening to you when you were a child allows you to find ways to comfort not only your own little son or daughter, but also the child that has remained within yourself.  You’re an adult now and you can use your adult perspective to make a difference in your children’s present and your own past.”~~Fred Rogers

Next up?!  Our first flight to Phoenix! Watch for our story on this full practice.  Click here to read about step 3! 
To learn more about fragile X syndrome please visit learn more about Cindi Rogers go to 

Monday, January 4, 2016


My husband, Chris and I, have never been ones to shy away from a big goal for our sons.  One of the biggest goals we set 8 years ago was for our son, Joe to walk the graduation ceremony with his classmates at Columbine High School as a Senior.  Of course, I had to blog about the experience in hopes that is would help other families facing some of the same challenges we faced to see that it is possible.

“Challenges” is really too minor of a word when I speak about the daily things that we face each day with Jake and Joe, our sons both diagnosed with fragile X syndrome. (  Sometimes I think a more appropriate word would be impossibility!  Any person diagnosed with a cognitive disability can have difficulty with simple that others may arrive at more easily.  In the case of our sons, speaking, taking care of their own personal needs or even being around other people and things can cause overwhelm.

My husband and I, over the 24 ½ years since diagnosis, have learned many methods and strategies to help us help them.  We continue to hone our skills in these methods and approaches every day.  In 2016 we have set a very lofty goal where we are going to need to muster every ounce of experience from our past to help us meet the goal.  It is possible that we may have raised the bar too high, but only time will tell.

In the past 20 years, we have become avid campers and currently own our fourth RV, we adoringly nicknamed “Rocket”, after a character on a children’s television program, "Little Einsteins".  We have had the privilege of traveling throughout the U.S. in “Rocket”, hitting all of the lower 48 states, all the while visiting other families touched by fragile X syndrome along the way.  Why not make a goal to get to Hawaii, we thought?  Seems like a nice goal, right?  With this lofty a goal, we anticipate many challenges to come. 

The very first stumbling block is the fact that neither of our sons has been on an airplane.  Never.  Ever.  This fact lends a itself to many hours of worry in a Mother's mind!  It's also one of those times when I wonder why on earth we never made flying a priority!  Would'a, should'a, could'a.....We have no idea if the loss of air pressure as we ascend in the aircraft will bother them.  We have no idea if we will be able to keep them occupied during an almost 7-hour flight!  We have no way of knowing how long the security line will be on flight day.  And this is only to mention a few of the things I have begun to worry about.
So, naturally, I shift into to my panic modus operandi whenever I approach a problem.   I will start with what I DO know:
-I will take on the task of calling, calling, and calling to find out about any programs that are offered by either TSA, our airport or other airlines that might help us do some sort of practice.
-We will make a plan to take 2 other short flights (destination unknown) to help prepare us during the 11 months prior to our departure to Hawaii (hopefully cheap flights).
-We will attempt to fly first class even though it will cost a significant amount more. I already know that United Airlines is the only airline that flies non-stop from Denver to Honolulu, so we’ll book that as soon as possible to secure it.  I suspect first class will allow us more room as well as early boarding onto the plane.  It’s a chunk of money, but we will forego any other trips in 2016 and save our, in the words of our son Jake, “bucks”! Anybody have any spare miles they want to will us?
-Our destination in Hawaii will be the Disney resort so that it is highly motivating for the guys, and builds some level of familiarity. We will harness our helpers from our last Disney trip to help us book this one, too, since I am not familiar with anything there at all.  Watch out Missy Zolecki and Me and the Mouse Travel!
-We will plan to take our most trusted friends in Daniel and Amanda with us.  Jake and Joe would much prefer to hang out with them, anyway.  It will add some extra cost, but the goal is to make the trip successful, and this will definitely do that.

There are a number of other logistical issues that must be addressed as well, but they will wait.  By booking the flight and resort early, it will force me and Chris to stick to this goal.  Not that it’s not a fantastic goal, but it poses some scary hurdles.  I think this might be the biggest goal we have ever set….or perhaps since a huge majority of it is so out of my control, it may just seem lofty. I like to do stuff I can control.

Sure, I have fears!  But, I have 11 months to work through them.  It’s important for Chris and me both to take this time to work through our own fears so that we can be calm energy for Jake and Joe.  Any sign of fear will likely cause the plan to fail. 

This will surely be one of the most expensive goals we have ever set, too!  It is not a fact that we take lightly, but we'd like to make it a reality for all of us.  Any person that doesn’t know us might ask, why we would put ourselves through this kind of stress when we know it will be tons of work without any guarantee of the outcome?  The answer is simple.  We strive to make our sons’ world bigger.  Life with a disability can be limiting enough without us setting boundaries.  We just need to work hard to make new things possible in a way that allows them to reach up to meet the bar.  Hawaii here we come! 

As I formulate an action plan and check off items, I will update this blog with our progress.  Thank you for reading!
Click here to proceed to "Part 2":

Friday, November 13, 2015

A Dream Is A Wish Your Heart Makes

A dream is a wish your heart makes
When you're fast asleep
In dreams you lose your heartaches
Whatever you wish for, you keep

Have faith in your dreams and someday
Your rainbow will come smiling thru
No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true”
~Sung by Cinderella/From the movie Cinderella~
Written by Mack David, Al Hoffman and Jerry Livingston

Yeah, Mack David, Al Hoffman and Jerry Livingston had it just right with these lyrics for Cinderella, didn’t they?  Her life story made these words pretty significant with that fairytale ending.  It tied right into the whole idea that Walt Disney created by saying that Disney is the place where dreams can come true.

Dreams manifest themselves differently for each person.  Before I had children, I had many dreams while I slept that glorified what a life with children might be like.  Sometimes, I day-dreamed about these, too.  Once I actually had two sons, those dreams shifted to a more realistic type of dream, both while I slept and in the daytime.  I am certain they were very different from my other friends’ dreams. Why, you may ask?

To fully understand, I need to give some context.  My family consists of my amazing and patient husband, Chris, of 30 years, as well as my two sons, ages 26 and 24.  My sons were both born with a genetic cognitively disability called Fragile X Syndrome (visit for more info on this), which is characterized by speech delay, sensory issues and behavioral issues.  Chris and I have worked for many years to attempt to master the skills necessary to help our sons learn to cope and function at home, at work and at places like Disney World.  Just as the commercial plug calls out to many, it called out to us, too.  We wanted to make Disney a place where our own dreams could come true.

Let me start by saying that nothing is easy with any kid, but having two sons with special needs has added stress and emotional repercussions.  A place like either Disneyland or Disney World poses special challenges for our sons to just function, let alone have fun.  The crowds of people moving this way and that (and stopping right in front of them) create sensory overload almost immediately.  The constant variation of sounds pose a whole set of other sensory input that helps fill up the proverbial “overwhelm cup” to overflowing.  Standing in line with people moving all around you at a very close range can put their body into a state of perceived pain.  Mom and Dad asking them to wait, wait, wait (for everything under the sun at Disney), requests of them something they often cannot provide.  The added excitement of seeing something they consider a very high level of interest just puts them over the top like a volcano overflowing.  But, I still want what every other parent on the planet wants….for my sons to experience joy on a Disney level.  I want to see them smile and enjoy something they love so much.  The song says, “In dreams you lose your heartaches/Whatever you wish for, you keep”, right?  Well, damn it!  I want that too!

Before I had children, I would dream of doing things with my own kids that I never did myself as a kid.  At the ages of two and newborn we received our genetic diagnosis, and that put a kibosh on many of the dreams that I had.  Over the years, I had to find a way to create new dreams, real dreams.  Of course, Disney, even for my kids with disabilities was a real daytime dream.  In reality, what I learned is that in order to be able to even try to approach something like Disney World, I would have to do some real honing of skills.  It took years, but I worked and worked to learn all I could.  Then, the real first test.

In 2006, we packed up our travel trailer and headed off to Disney World for that magical family vacation in the family truckster.  What I can tell you now is that Chris and I only have one of, what the movie “Home” would consider, permanent memories, and it’s not a good one. The rest we blocked out, leaving us with very little to go on for a repeat trip, except fear. Obviously, I needed to continue to work on my skills.

Disney is the perfect place to test any skills you think you may have and to challenge any others.  One of the skills I thought I had was the ability to plan and prepare.  Thanks to our personal expert, Missy Zolecki, who helped me plan an innate number of details about the Disney experience, I was prepared to some extent. We always travel with whatever the guys need to help them in their sensory diet routine (, like their weighted blankets, and we use our methods religiously even when traveling.  But, like any other away-from-home experience that could be stressful for our sons, I prepared our familiar visual calendars and schedules to help them know the things they need to know to feel safe; what am I doing, how long will it last and what’s next?  Each of these things is usually pretty easy for me to provide, and are usually fairly predictable and fairly accurate. In the World of Disney, I, much to my chagrin, have zero control, and was not able to predict with 100% accuracy. 

Our first full day of park time began with our very first test.  Prior to that day, Missy and I used every resource available and still did not predict that busses would not run between Fort Wilderness, where we parked our 4th RV, endearingly named “Rocket”, to the Magic Kingdom.  No, no, no!  We were then told by park staff that we could drive to Magic Kingdom and park right at the park.  Still not correct.  Yes, we did drive and yes we did park, but no, we were not AT the park.  We still had to take the Monorail to get TO the park.  This was a total surprise to me and Chris, and therefore, a complete surprise to our guys.  Now, when our guys were young, this would be a deal-breaker, but on this day full of excitement to capture the dangling carrot, they took it completely in stride.  When Jake and Joe were young a situation like this might cause an irreparable meltdown that cannot be recovered from, causing us to have to leave.  It did help, as it always does, when Chris and I gritted our teeth and remained calm, acting as if it was all part of the greater scheme in life, while in reality, we starred at each other secretly cringing and rolling our eyes.  Hurdle #1 was cleared.

Having an abbreviated monthly calendar posted in the RV, as well as a more detailed daily visual schedule with us showing what steps we had planned, has always been very helpful for our guys.  It’s helpful for them to achieve their work at their daily jobs, for their chores at home, and for leisure activities they participate in like Disney World.  They are accustomed to it, and most of all, they trust it.  This was no different.  Normally, I use the pictures of things that I am sure of and try to represent the things I am not sure of (as long as I know about them!). The first item I had posted on the visual schedule was to arrive at the park.  The second was for us to go get the infamous Disabilities Access Pass which would involve the guys being present, but waiting off to the side while Mom approached the queue.  Chris and I had planned that they would sit somewhere and perhaps enjoy a small snack while they waited, which was a good plan—until we get to City Hall and realize the seats are all occupied.  Thankfully, we were asked to move to the Chamber of Commerce building to complete the process, and there were a few seats there.  The unfamiliar and uncomfortable Florida heat and humidity were already taking its toll on Joe, our younger son, as represented by his profuse sweating, and we hadn’t even begun the day!  My turn finally arrived to speak to a smiling Disney representative, holding an ipad and asking what she could do for me.  I explained our need and she proceeded to assist.  She was calm and extremely helpful.  In addition to issuing the DAS pass she helped to rearrange the previously created schedule in order to better accommodate our time requests.  Fabulous, I thought.   She then explained that the DAS pass would be held on our older son, Jake’s, Magic Band, the rubber arm band used to hold every detail of our vacation, and worn by each one of us.  We set off with smiles hoping to resume our visual schedule and capture that prolific “magical” feeling everyone in our midst was seeking. 

The first event I thought the guys would want to see was the Buzz Lightyear Space Ranger Spin ride.  Though they had never really ridden a ride, it was described as a slow moving, spinning ride, and seemed like a good possible first-time ride goal. Buzz and anything “Toy Story” are high interest so we thought we’d try. We approached the “Fast Pass” line, scanned our Magic Bands on the electronic band reader and joined the other anxious waiters for our turn.  The line appeared to wind around and around.  People stood close to one another as the heat in the air rose and fell.  No one was moving.  Not at all.  The line just stood there.  After some time that felt like an hour but was probably like 10 minutes, a voice echoed from the loud speaker alerting waiters that “This ride has stopped and will resume running in just a few moments”.  We waited.  We stood.  Joe sweated and we wiped his head, neck and face.  Chris and I stayed calm, but we looked at each other with an inquiring look on our faces.  Joe became more and more agitated as the minutes ticked by.  The line still wasn’t moving.  After a few minutes more, the voice repeated the same announcement.  Joe didn’t seem to understand why the bodies around him were not moving and why we were simply standing there.  We asked him if he wanted to ride or go out…he chose go out.  So, we asked a nearby staff member where the exit was, we moved toward it and we exited.  Chris and I sensed that this first step was not a success, although we considered the fact that Joe was able to communicate his needs a win.  Visual schedule ride #1, skipped. Hurdle #2-crash and burn.  We stood a moment to get our bearings on the park map and moved toward the next visual—Pooh Bear. 

The heat and humidity continued as the sun bared down on all of us as well as every single person who moved around us.  We plodded on through the crowds to Pooh Bear.  When we arrived to see the Hundred Acre Wood that we remembered from our visit in 2006, it became evident that this would not be the Pooh Bear we remembered.  There was new “Fast Pass” line and “Stand By” line, but no little place where you could just walk up and touch and see the Hundred Acre Wood.  We decided that standing in another line to ride an unfamiliar ride probably would not be the best idea for Joe. Chris and I did a little, what we call side-dialogue (a method where we talk to each other about something we really want the boys to hear) saying, “Boy, it looks like Pooh Bear has a really long line.  I don’t think we want to stand in another line, so I think we’ll skip this and go on to see Beauty and the Beast.”  No outward response from Joe. We had to walk on, skipping another item on the visual schedule.  Joe was visibly agitated now as exemplified by his red face, but holding it together.  We ducked into a store to distract, spent some money and warded off some of the anxiety over the skipped visuals.  The next item on the schedule was “Enchanted Tales with Belle”, so we headed for it.  The “Fast Pass” line was clear!  But, we had to wait…..more waiting.  There was literally no one in front of us, but there was a nasty rope preventing us from entering the attraction.  Joe was mustering every ounce of energy he had to keep his cool.  Chris, Jake and I stood back to give Joe some room and allow him to move around.  People began to line up behind us as the show time neared.  Finally!  It was time to take down the rope and allow us to move into a room where we would all gather and begin to hear the story of Beauty and the Beast as told by Belle, whom both guys really liked.  The room became more and more filled.  We chose a place at the back of the room against the wall so that no one was behind us.  The room, thankfully, was air conditioned, but as the people filed in, this became less evident.  Joe moved from side to side.  He was still sweating profusely.  He bumped Chris and bit his hand—always a sign that he was nearing his that eminent lava-flowing stage.  I mouthed the words to Chris, “Should we exit?” He nodded, no.  As I glanced away at Jake, I felt Chris touch my side.  Joe had bitten his shoulder.  At that very moment, the next set of doors opened and the crowd moved in to view the attraction.  Chris motioned for Jake and I to go, so we followed the crowd.  I glanced back, bending at the waist to see Chris asking a member where they could exit.  I was sad.  I knew from experience that all of this might be too much for Joe.  Our 2006 visit had left that permanent black mark in my memory.  Here we were again feeling like dog doo at the fun and happiness we attempted to instill upon him.  Why is it that the happiest place on earth, as it’s trumped to be, is NOT the happiest place for him?  A lump formed in my throat.  I was struck back to reality as Jake squealed with delight at the voices and music sung by the Wardrobe character in front of us.  He was having a ball!  We were escorted into the facsimile of a library from the movie scene, where Belle made a grand entrance and Jake was in awe.  He made noises far and above anyone else in the room, forcing a few quick glances in his direction.  I ignored those out of habit.  I really didn’t care because I knew he was in sheer Heaven at that moment.  In a very un-Jake-like moment, he later rose to wait in a short line just to hold Belle’s hand.  Such delight.  Tears stung the backs of my eyes, but I resisted in order to exhibit only a proud smile.  As I glanced around the room at all of the little boys and girls in the room with their quiet, adoring parents, I felt a pang of jealousy.  These kids were smiling, yet alert and quiet.  The contrast was stark.  Not only was Jake 6’1” tall, he also made a lot of noises to express his glee.  This was all a good diversion to keep my mind from drifting back to Chris and Joe.  Soon enough this momentary joy would end and we would exit and go outside to see what the outcome was.   

As Jake and I filed through the exit with everyone else, both Chris and Joe greeted us in a calm, somewhat relieved manner.  I hugged Chris and asked if he was ok to which he responded, “of course”.  This is why I love this man and consider him to be such a heroic Dad.  At that point, I asked Joe if he wanted to now go see Cinderella.  He answered in a resounding, “Yeah!”, so we walked toward the castle and into another line.  I worried that placing this many demands on Joe and expecting joy might be selfish.  Both guys absolutely loved Cinderella and have enjoyed the movie since they were toddlers.  Besides, what Prince doesn’t love a Princess?  This line was much shorter, and seemed to move at a fairly brisk pace.  The orderly line of people was dominated by little girls dressed in their princess outfits, clinching autograph books that awaited her signature.  We were escorted into a small room where the beautiful Princess Cinderella stood under bright lights with only a photographer present.  It was finally our turn.  Both boys approached her gently, but unknowingly, not quite understanding what they should do.  I encouraged them to shake her hand.  She kindly took one of their hands and held each one individually, cradling them softly in both of hers.  Tears did well up in my eyes this time, but I allowed one to fall as I smiled. I didn’t want the guys to see me emotional as it might disturb their own joy.  The sad feeling of only 30 minutes before was in stark contrast to this moment of calm tenderness.  It only lasted 2-3 minutes, but like a roller coaster, I shifted from sad to an overwhelming feeling of happy in a New York minute.  I snapped a photo for my new permanent memory.  My worries were dispelled.  This was all enough for our first magical day.

That evening, I did what I often do after a situation where I am sad and disappointed in myself; I had a talk with my conscience. 
I said, “Self, what did you do wrong?
Me: “Well, I pushed when I should have pulled. I expected too much after I already told myself that this part of our vacation was for them—not me.  I should have paid attention to the known warning signs and not attempted to push through them.”
Self: “So, what are you going to do differently tomorrow?”
Me: “(Touching my imaginary index finger to my chin) Hmmmm….well, First, I need to revert back to what I know to be proven successful skills.  I think we should plan to do maybe one activity before taking a break, then try another, then a break and see how that goes.  If there are any warning signs, we will halt immediately.  I need to remind myself that this Disney thing is for the guys and to let them drive.  Somehow, I believe that tomorrow will be better anyway since we are planning the day at Hollywood Studios and there are some high interest things there.  AND, my experience tells me that day two is always better.  In fact, I am going to make a note that perhaps if we come again that we should skip the Magic Kingdom altogether.  It’s too crowded for Joe.  Ok, that’s the plan.”
Self: “Ok, then let’s forgive ourselves and move on, shall we?”

Also that same night, as always, I laid out the detailed visual schedule for day 2.  It included a first stop at a resort character breakfast that featured Mary Poppins (one of Jake’s all-time favorites), Pooh and Tigger, then on to Hollywood Studios.  We had plans to see the Muppets 3D, have lunch and then go to the Beauty and the Beast on Stage and do some shopping.  Chris and I agreed that no permanent damage had been done and that both boys seemed excited about tomorrow.

That excitement continued as they woke, dressed and loaded into the car to head to the Grand Floridian resort.  We were seated immediately upon arrival at the restaurant.  As we glanced around, Jake immediately gasped and pointed at his ever-favorite Mary Poppins as she passed through a door for an obvious break.  We managed to get him something to eat before she re-emerged and approached our table.  I explained to her his life-long adoration for her and the movie while I rose from my chair next to him and motioned for her to take my seat.  She moved effortlessly into my chair, took Jake’s hand into hers and proceeded to speak quietly to him.  As is common for those with Fragile X, Jake would not look directly at her, but she held herself close to him and spoke gently, calmly and quietly.  It was so touching and so incredible to witness.  Even though Jake could not show his joy and adoration they way others might, I sensed a great deal of love and contentment in his world.  He had waited so very long to finally get to meet her.  We had chased her all over Epcot in 2006 and never had the pleasure of finding her, but here we were….nine years later.  She was sitting right next to him.  He showed her his copy of a mint-in-box “Mary Poppins” blue ray and she smiled.  He showed her his visual schedule with a special picture indicating that she was a part of his day.  He touched the picture gently and repeated, “Ponnnns”, which stands for Poppins.  Life as he knew it could not get much better. We all enjoyed the breakfast, and Joe loved seeing the characters, too. 

Next, we drove the car directly to Hollywood Studios, entered the park and moved quickly to the Muppets 3D feature.  Joe laughed outloud and smiled widely as we entered to see all things Muppets!  He had a ball!  We spent some time shopping at the store with all things Muppets, and he was finally content.  He proudly carried his bag of goodies as we basked in our joyful glow.  He absolutely loves the Muppets so this made his day.  We had seen this attraction before so it was quite predictable and the lines were minimal.  In fact, Hollywood Studios as a whole was way less crowded than the Magic Kingdom had been, which was a relief.  We, of course, did some shopping to spend some of the guys’ hard-earned money on frivolities, then we made a plan to sit down and have a nice lunch.  Everyone was intact and content. 

Whatever image or expectation I may have had for our visit was certainly exceeded.  Yes, there were bumps.  Yes, we could have done it differently. But, one thing Chris and I agree on…knowing that 1% better is still better….this time as compared to 2006 was 75% better.  We have learned (although sometimes we forget) that things do get better.  When we take a moment to really reflect on some of the things we never thought the boys would do like sip through a straw, or talk, or sleep through the night, or wear underwear…ya know, small things…..they ARE doing those things!  When we stop and think about the things we never thought we’d get to do as a family, like…….say, leave the house…..we ARE doing those things.  Having an RV like “Rocket” has given us these opportunities.  Having incredible people around us to help us overcome some of the difficult parts, like Tracy and Mouse, these are real, tangible achievements!!!  We need to grant ourselves a break.  Screw guilt!  Screw grieving! Doing Disney for us is one of the most challenging things we've done, but we succeeded in making it overall a positive thing for the guys.  We DID this Disney thing!

No matter how your heart is grieving
If you keep on believing
the dream that you wish will come true”

I like to think these words really are true.  We learned some new lessons which we will note for next time.  Yes, there will be a next time and it will be even better!  

Note: If you would like to read more about Cindi Rogers and her family, visit  Here you can learn more about her book Becoming Mrs. Rogers: Learning to Live the Fragile X Way and about the Rogers Family FX Family Fund.  In fact, the annual fundraiser is going on now to raise funds to help other families like hers obtain scholarships to attend the bi-annual International Fragile X Conference, where world-wide experts gather to help educate those affected by Fragile X Syndrome.  Won't you help us help others???

Tuesday, September 8, 2015

A Small Slice of Heaven Amidst a World of Change

I openly admit it…I don’t like change.  In fact, I don’t know many people that do!  But, it is a daily fact of life that I have had to find a way to deal with.  One of the ever-changing things in my life has been my career.  If you’ve read my book (Come on, just read “Becoming Mrs. Rogers”!, then you are aware of some of the facts surrounding these changes. 

To sum it up, I spent 20+ years as an Executive Assistant working for high-powered corporate gurus, wearing suits and panty hose in the Monday through Friday, 8:00-5:00 grind, while, my husband, Chris, spent more than 30 years honing his skills as a commercial plumber.  Then, in 2009, together, we formed our own commercial plumbing subcontract company.  It’s a complicated title that really means we do all of the plumbing for a General Contractor, specifically on commercial jobs like restaurants and new commercial buildings. 

Not that it’s terribly interesting, but just to provide a bit of background…..We’ve had the privilege of working for one specific General Contractor that, in the past, did a lot of the building for new McDonald’s Restaurants.  This allowed us to hire a few employees, and work at a steady pace for several years.  It wasn’t hard for me to move from Executive Assistant to Bookkeeper, as they are quite similar!  It did take me some time to understand all of the details surrounding plumbing, although I had been married to Chris for 25 years at the time, and knew a lot of the lingo and could identify parts, etc.  Around the middle of 2014, though, McDonald’s nearly ceased building any new restaurants due to the flux of business capital (money).  This sent a wave of changes coming our way.  

We have been somewhat used to change since the birth of our two sons, who were born with a (SURPRISE!) genetic cognitive disability called Fragile X Syndrome.  We knew nothing about it until we got the news when our oldest was two-and-a-half and our youngest was a mere newborn (again, read the book—it’s a detailed account of these awesome guys).  This is the kind of unexpected change that rocked our world!  In hindsight, it kind of seems petty to even blog about a job change with all of this uncertainty going on, right?  Well, hang on….this is relevant.

So, last fall, Chris and I discussed it, and we decided to take a leap of faith and pursue work on Love’s Truck Stops with this loyal contractor since the future of McDonald’s and our bread and butter, were gone.  What does this mean?  Well, if you’ve done any traveling, you realize that Love’s Truck Stops are built on major interstates, miles apart!  It’s good work, but it would require Chris to travel in order to do the plumbing on this kind of job.  We had a company meeting, over a nice dinner (you can do this when you own your own business), and decided that I would become a Plumber.  I had little experience, but I was willing to learn, AND I slept with the boss, which was an added bonus.  I had a base of knowledge, but Chris had 30 years on me.  Also, the fact that he is not the most patient teacher would require us both to adjust. 

We did a few smaller jobs near home to fill the immediate void and bring me up to speed, and then we took our first real contract on a Love’s away from home.  Among the many benefits for our family is the fact that we own a little RV named “Rocket”.  This makes traveling with two young adults with Fragile X Syndrome more doable, but would still require me to be extra organized in order to make is successful for them.  “Rocket” has been a God-send over the past many years as we’ve traveled to all of the lower 48 states for pleasure, visiting other families affected by fragile X syndrome along the way!  This kind of travel has allowed us to meet the specific needs of our sons who need structure and routine when exposed to any kind of transition.  Why not use it for yet another transition—that of work? 

I began the same way I had for any other transition for our sons, planning, preparing and praying.  I spent the week before our departure planning a menu, and prepping meals for an estimated 14 days away.  There is no way that I wanted to work all day in the 100 degree heat then prepare a nice meal for our family. So, I pre-cooked things like spaghetti sauce, beef stroganoff, taco meat, enchiladas, grilled chicken and pulled pork to become major parts of easy-to-assemble meals.  Then, I packed fixins’ for other meals such as crockpot lasagna, crockpot meatloaf and a tasty dish I like to call crockpot green chili chicken rice, that I could easily plunk into the crockpot in the morning and we could eat later that evening.  I like the idea of using the crockpot when the weather is too hot to use the oven in “Rocket”.  Now that the logistics of meals were complete, I focused on preparing the guys for a whole new routine. This was also going to be a big change in their lives.

Jake and Joe really live the very best life when we can provide a structured schedule during their day, including recreation, and/or work.  They both hold very good jobs in our home neighborhood, but we had to think about how they could be happy AND productive while our own work required us to leave home.  I also wanted to find even small things that we could do to continue to make their world bigger and allow them to experience new things. This has always been a goal we lived by. So!  How could we do this? 

I pulled out my trusty library of picture symbols that were the language of our sons.  With a very limited vocabulary from a very young age, we have learned to communicate with them via a complex mixture of pictures that tell a story called ‘pic sims’.  This story would at least give the guys a daily idea of what we were doing, how long it would last, and what was next—all important things for them.  Then, Chris, my amazing husband, and I talked about how we could make our sons’ lives quality while we worked.  Afterall, we would be taking them away from their own daily jobs and plunking them into our work life.  As with any trip we’ve taken in “Rocket”, we did some research to find out what would be in the area of our short-term community.  One thing we learned very quickly is that Love’s Truck Stops are often built near very small towns in order to make their presence more viable.  What this meant for us is that there was not much around to entertain us while we worked.  We had to figure this out.  I gleaned some help from my past methods and approaches, especially for our sons. 

The dog, Lulu, and the guys all loaded into “Rocket”, I drove our truck and towed the trailer full of tools and supplies, and we hit the road on our first adventure of working away from our home neighborhood. We decided to camp nightly at the closest RV park in proximity to the job, which was 20 miles away.  To our pleasant discovery, this RV park came complete with a full-sized drive-in movie!  It also had its own homemade pizza and snow cone stand!  We took full advantage of these amenities to help make life more tolerable during our 2-week stay, then it was home for a few weeks, repack, and make our way to the next stop.

The next town did not have a drive-in, but it did come complete with a really nice city park that included a water feature!  We decided to make a plan to pack our lunch each day and take it to the park.  As is with any transition to a new place, we anticipated our first day’s visit would be brief—only about 15 minutes.  We developed a quick, albeit successful and complete routine, for the park that included sit down and eat, play at the water park (not get in) for a few minutes, then walk Lulu around the perimeter.  Our past experience has always been that “the third time’s the charm”, and this park visit was no exception.  The second day we stayed for 30 minutes, then the third day was a full hour.  Other than a bit of relaxation, we had no expectations.

Having no expectations usually means that Chris and I are often surprised, and we certainly were in this situation!  We used to visit parks often when our sons were younger, but had not made a habit of visiting the jungle gyms of late.  It seemed they had both outgrown them.  On day number one, even at the age of 26, and being of limited motor skills, Jake, wanted to go down one of the little slides that were fairly easy to access.  I stayed back and just observed while he approached, climbed the steps and went down, all the while bearing a smile on his face.  Joe, age 24, also independently went over to the swings and climbed on.  I had forgotten how much fun these things used to be.  This park was equipped with an exceptional set of obstacles that included a rocket ship and three really tall slides, but getting to them appeared to me to be a bit of a challenge.  I was not sure if either of the guys could manage it.  What do I know? I’m just a Mom. 

On day number four, I made my way up the first level of steps, then negotiated a curved ladder that was reversed leading to a landing.  I found it to be a little bit awkward, but Jake followed me without hesitation, leaving me speechless.  I never knew he, the one with the most limited of motor planning success, could conquer such an obstacle…but he did.  I was so proud.  He took his time and carefully placed one hand then one foot in front of the other, surpassing each rung by himself.  It was awesome.  I, then, left the landing and climbed another long ladder that led to an even higher platform that led to a choice of three different slides.  Jake, again, followed, picked a slide and went down ahead of me.  This would be the beginning of a new routine that would become each day’s process.  I felt as if we had managed to make his little, but full, world a little bit bigger that day even with something as small as going down a slide.

Joe, too, made huge strides as he tolerated more and more calm and relaxed enjoyment at the park.  Then, there was day 10.  The job site was deserted on this day, but the numerous pieces of heavy construction equipment were still present.  Joe has always loved big trucks, big “diggers” and anything to do with Dad’s world.  Chris asked Joe if he wanted to drive the backhoe?  At first, Joe was hesitant, but within 60 seconds, he was out the door of “Rocket” and standing next to the huge “digger”.  Chris opened its door and Joe climbed up and sat in the driver’s seat.  Chris started the engine.  The door was closed now, so I could not hear what was going on, but the gestures were gentle and calm.  Joe grasped the steering wheel like he owned the world.  Suddenly, the gas pedal was pressed and off they went for a jaunt around the property.  Smiles were everywhere.  After a few minutes, they returned to the area where I was standing, Joe jumped out and bellowed a loud “Hulk-like” sound.  Total man moment.

The following day, we were nearing the end of our work for phase number one on this job (there are a total of three, typically).  We decided to take the afternoon off and see some of the local sites, though limited.  We had heard about one of the most interesting spots, which was a historic carousel.  Those words don’t even begin to describe this “carousel”!  This one was made in the early 1920’s and is #6 in the patent office.  It is all hand-carved wood, with hand-painted panels and animals of all kinds.  There is a tiger, a lion, a giraffe, a prong-horned sheep, and of course, horses.  Our guys had never ridden a carousel, so we, again, weren’t sure what to expect.  I had used the pic sims to attempt to communicate riding a carousel, but the actual riding would be a surprise.  We paid the extremely affordable price of 25 cents apiece, picked our animals and waited for the ride to begin.  The antique pipe organ began to play, and we began to circle at a rapid pace of 12mph, which is pretty fast!  I sat on a goat next to Jake, who sat on a camel.  Chris sat next to Joe and off we went!  We went around and around for the full 4 minutes, feeling a bit woozy as it came to a stop.  All of us enjoyed our first ride on this historic carousel and had fun while doing it!  It was a great day.

We will likely continue to abhor change, but in the face of reality, it is likely that we will also learn to cope.  As our guys have shown us…they can do it, and so can we.  My next really big task is to develop, teach and hon new jobsite tasks for Jake and Joe. They are already very good at following 2-3 step tasks on an ad hoc basis, but I know they are capable of more.  Only time will tell.  It's a matter of figuring out how to do what they are capable of in a safe manner in an environment that is not always safe.  I have faith.  We also know that these kinds of life changes are almost never permanent, but we have resolved ourselves to be happy while enduring that 4-letter thing called work.  I never planned to be a Plumber, but I am content for now to be an integral part of our company working on the front lines.  We feel blessed to have each other and be together each and every day.  Hey!  How many people can say that they got to spend their 30th wedding anniversary working side-by-side with the one they love?  All in a day’s work……