Thursday, February 8, 2018

The Courage to Fight


As I gaze up at my two sons who are now 6-feet-1-inch-tall adults, I am reminded on a daily basis that our life together will have its challenges. The negative effect of their genetic disability rears its ugly face less frequently now, but their need for assistance will never fade.

Recently, we have been even more aware of one challenging behavior in our youngest son, now 26. This awareness has led me to venture into a dark corner where I am revisited by a sense of doubt and fear.

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.

Prior to the age of 10, my husband and I learned bit-by-bit about methods and approaches to help Joe.  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.  Every single method took time and patience and resilience to learn and impose.  None of them had any written guarantee that they would work. Each one required us to be the guide and also be consistent.  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.

If you’ve had the chance to read my book, “Becoming Mrs. Rogers”, (buy it here) 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.

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.

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.  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.  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.

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.

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.  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.  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.

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.

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.  This kind of plan can also be called a Sensory Diet.  I’m no expert, but I do know that a sensory diet is VERY important to my sons and it has been forever. It has changed a lot over their lives so far, but it still needs to be an integral part of their day.

So, we worked with the school to come up with a new schedule for Joe, and subsequently some of the other kids in his class.  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.

Sometimes, I guess I need a reminder about what his needs are…even when things are going somewhat hunky-dory.

These days, 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 think the floor will cave in.  We’ve simply let this go on, allowing that doubtful voice to back us into a corner of fear. 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.

That fear of acting on my thoughts and that voice of doubt kept beckoning me to just keep things the same.  The voice told me that, “It will get better”, or “This too shall pass”, but it hasn’t. It didn’t.

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”.  All the while, Joe is telling us something….I NEED SOMETHING!

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. 

Like a switch, Mouse says to me, “Oh, Cindi, you know what to do!” 

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.”

Mouse replies, “Or, what about incorporating some activity at the rec center as a part of his routine before he goes home?”

The conversation continued for a few moments, but these ideas resonated with me just like they had some 16 years before.  “RIGHT!”, I thought….Joe still needs his gross motor input so desperately that he’s exerting his energy when he comes home!  DING!

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. 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.

Yesterday was day 3 of this new plan, and boy-howdy is it working! On day one, Joe was 75% better; day two, 50% better; day three, 75% better. 

Out of this enlightening exercise, two things have been real “Ah-ha” moments for me….

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.

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.  I realize the questioner in my imaginary, dark room was there all along offering their extended hand in aid.

I just needed the courage to fight and to ask my people to help me fight it.

To learn more about "Becoming Mrs. Rogers" or about Cindi, please visit www.mrsrogersworld.com


Tuesday, January 9, 2018

PLAYING HOPSCOTCH


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.

They say grief is a process. Who knew it would last this long?

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.

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.

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.

As years passed, I realized that all of those conjured images were just thoughts, and that our sons could do 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.

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 it was great.

Grief reared its ugly head now and then through the years, but subsided shortly after, leaving me with my perpetual sunny outlook.

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.  

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.

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. 

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.

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 we celebrate with them….but at the same time, I look around and see our life not changing and I am once again hopping backward.

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.

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.
 
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.

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.





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.

I am reminded that no life is perfect, but that it’s our response to those challenges that makes us the person that we are.  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.

Tuesday, November 28, 2017

DO YOU BELIEVE IN MAGIC?


Magic can come from many places.

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.

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.

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.

“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….and giving up. We needed some kind of life preserver—literally. We had lost hope and we needed someone to help us restore that hope.

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 MAGIC.

In 2003, they created an amazing non-profit organization called Developmental FX (developmentalfx.org) 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.

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.

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 WHAT 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.

Developmental FX has given us something that no other organization has given us—HOPE.

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 tools to use every single day…..to survive.

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.

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.

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 MAGIC. 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…..

The ones who struggle every day to find hope;

The ones who have fought so hard but are "this close" to giving up;

The ones who live in countries where no one knows anything about fragile X syndrome;

The ones with a newly diagnosed child that feel like the diagnosis will strip away every ounce of determination they can muster.

Click here to go to Colorado Gives (Colorado Gives Day)

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 MAGIC.

I hope you will share this post so that others can experience the MAGIC too.


To learn more about Cindi Rogers or her book “Becoming Mrs. Rogers-Learning to Live the Fragile X Way”, please visit www.mrsrogersworld.com

Thursday, November 2, 2017

DAD IS KING



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. 

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. 

I ask my usual question in this situation, “Who should we call, Joe?”

With a mouth full of toothpaste he still manages to answer in a mumble, “Dad”. It sounds more like, “Daa”.

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.

Joe doesn’t miss a beat and manages to gurgle, “Is King”.

Me, not completely understanding this newly developed phrase, I ask, “Is Dad King?”

Joe says, “Yeah…!” with a strong sense of enthusiasm.

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.

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 (www.fragilex.org), 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.

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.

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, Becoming Mrs. Rogers, (Buy Becoming Mrs-Rogers by clicking here) my memoir about our life. All of the sometimes gory details are there for you to enjoy.

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. 

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.

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.

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.

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.

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.

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.

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.

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.

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.

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. 

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.

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.

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.

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.

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.

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.

Joe bounds onto our bed and sits cross-legged. This in itself is not unusual, but Chris sensed he needed something.

Chris says, “Joe, do you want something?”

Joe says, “Yeah!!” with a certain amount of decisive exclamation.

In an unusual act, Joe reaches for Dad’s pillow, places it at the foot of the bed, and lies down on his stomach!

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????”

Joe exclaims, “Yes!”

A chuckling, open-mouthed, stunned Chris says, “OK!”

This HAD NEVER happened.  Not only that, but it is rare, and I mean rare, that our guys will even tell us what they need! 

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.


This is why, in Joe’s eyes, his Dad is King.



To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld

Monday, October 30, 2017

I'm Finding It Difficult to Cope


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.

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.

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!!

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.

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 no one else on earth could possibly be facing…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!

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.

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.

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. 

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. 

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. 

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.

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.

Last year, by the time we got to December 1st, 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 1st, 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. 

In some ways, it’s a blessing that our two sons are on the severe spectrum when it comes to Fragile X Syndome (www.fragilex.org) 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.

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. 

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.

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 do 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. 

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.


To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld

Tuesday, July 25, 2017

Imperfect Hope-Living with Fragile X Syndrome

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 www.fragilex.org. That's what this month is all about...learning something you may not have known before.

Hope is not a word that my husband, Chris and I say with casual disregard.

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.

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.

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.

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.


The beginning of the dreaded potty training

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.


One of the first moments of Joe on his new bike--standing still.

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.

The very idea that our sons were going to someday be adults….without us……kept us awake at night, and worried during the day.

Our boys continued to grow and develop and learn and love.

Their parents continued to grow and learn and acquire acceptance.

And then they did 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.

Looking back, I realize that hope was with us all along. 

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.

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.

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.


Jake with his friend, Daniel, who guided him in basketball for years.

Other “Angels” like Teachers, Para’s and friends provided sprinkles of hope, day after day, year after year.

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 26 years ago, life is so much better than we ever imagined it could be.

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.

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.

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 can do something about? Worry about things that those consummate Angels will help us with?

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.

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.




Personal note: I have enjoyed sharing our family’s story during this month of awareness. I continuously feel driven to write and write and write. THANK YOU for reading about our journey. It means the world to us that you care enough to read and learn.

To learn more about Cindi Rogers, her book or follow her family, please visit mrsrogersworld