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

Tuesday, July 11, 2017

The Major Issue with Fragile X Syndrome No One Seems to Talk About

July is National Fragile X Awareness Month…..and there is one major thing you will NOT learn about Fragile X Syndrome by looking at posted facts on Facebook or Twitter.  For all of the scientific facts or to learn more about fragile X syndrome, please take a moment to go to www.fragilex.org.


In my one-and-one-half hour drive to work this morning, I was able to fully contemplate every aspect of the subject matter for this blog.  I mulled over the many chapters of my life and how it relates to the one thing that no one seems to talk about when it comes to fragile X syndrome—marriage.

In 1985, when Chris and I made our way down the perfectly groomed path of his parent’s back yard to recite our nuptials, I somehow doubt that any one of the more than 100 friends and family gathered were wagering on whether or not we would have a son or daughter affected by a genetic anomaly called Fragile X Syndrome.  How could they?  No one had even heard of it back then!

As Newlyweds, all we thought or talked about were goals, dreams and predictable difficulties yet to come. We shared thoughts on future disciplinary methods for children yet to come, what would bring each of us joy, financial goals, work/job goals, what we envisioned our future to look like and a thousand other things.

Five years later, as we both looked down into the angelic eyes of our first-born son, we still had no clue what we were in for. We shed tears of joy over his arrival and reflected deeply into the bright future that our progeny presented. We dotted over his every move and milestone, until those milestones were delayed and delayed, causing his worried parents to sink into an unfamiliar life of question and uncertainty.

Twenty-six months later, our second son was laid in my arms, and again, I wept tears of joy, but also tears of concern. I passed the little, warm, innocent creature to Chris, and watched as small wisps of fear appeared in the worry lines of his face. Virtually days later, our entire existence would change.

We heard those hallowed words “both of your beautiful boys have a genetic developmental disability called Fragile X Syndrome”…..and there was NOTHING we could do about it.  There was no cure.  Our married life had shifted into a whole new dimension with this news.  We were forced to question every fundamental moral and life value that we had previously laid out. 

One new assignment was laid in our laps right away.  We had to learn how to cope while learning how to grieve.  It was immediately obvious that I would grieve at a different pace and in a different way than the one person that I thought I knew better than anyone.  I grappled for information and asked questions while Chris stayed silent, taking in the realities. We had to figure out how to keep it together for the boys, but still support each other, even though we were in totally different places emotionally. The reality that very precise, minute, little dreams were dying one-by-one before our eyes, made the task even more daunting.  How could we possibly overcome so much devastation and do it together….and stay together?

For the first four years or so, we merely existed, not comprehending the extent of the implications some microscopic gene would play in our life. I found myself crying over small things, but didn’t always understand what I was crying about. Chris stayed strong and upright, but inside he was angry. Over the years, we each did progress through the entire grieving process at our own pace, doing our best to support one another. How we did it, I am not completely clear on, but I think a strong love surely helped.

I cannot put my finger on any specific reason that we’ve made it 32 years. I can point to some coping skills that we’ve eased into naturally, as well as some things that I, personally, would attribute to our wedded longevity.  We, of course, are not perfect, just like all couples. We have good days and bad…but more good as the years go by.  We have squabbles, compromises and miscommunications just like everyone else.  But learning each other’s rhythms has certainly added to a positive day-to-day life.

It can’t hurt that we met each other in Mrs. Johnson’s 7th grade French class (for full details on that story, click here The Lost Chapter).  Having 8 years to get to know one another before we were married didn’t hurt. By the time we got married, we really knew each other pretty well! Now, we own and run a company together! Yes, we see each other every day and work together, too!

On the jobsite  (on our Anniversary no less!) as we
run our commercial plumbing company together.

I have to say that one thing rings pretty clear when it comes to our happiness as a family despite fragile X….finding small moments of joy can carry us through those tough spots.  Once we learned how to see these small moments of joy, we all woke up and were able to see the blessings instead of the sorrow, the devastation, the sadness.  Small moments of joy can be found in the strangest places.

Sometimes, during a rough patch, I’ll head into my peaceful place….my kitchen. I find that doing some mindless chopping or stirring or measuring brings me back to an even keel. I’ll open the refrigerator and pull out some Italian sausage, some hamburger, some green pepper, onion and celery, and lay them on the kitchen counter.  I’ll turn toward the pantry and gather a few cans of pureed tomatoes, some tomato paste and a handful of different herbs. After a few minutes pass, Chris appears right beside me wielding his favorite chopping knife and a cutting board to serve as my sous chef.  No words are spoken. We each enact our own steps as if to follow a well-choreographed dance that we’ve done many times before.

The aroma begins to fill the house. The table is set and wine is poured. We calmly sit together as a family. Plates are heaped with noodles (sometimes homemade if we are all feeling particularly in need of comfort), then ladled with sauce. Sprinkles of fresh parmesan are dropped on the surface like little snowflakes. The boys eat their meal in the characteristically fragile X way, with the fervor of a famished animal, wiping their faces and leaving the table. Chris and I are left to enjoy the fruits of our labor and a glass of Chianti. This always seems to incite calm conversation followed by settled nerves.  It’s a small thing, but for us it’s what gives us joy and resolution. We can come together over a delicious meal and approach whatever is hovering overhead in a more approachable mood, together. We seem to have some of the most productive conversations over a meal we’ve prepared together.

One of many instances where we share a special meal together--my birthday.

I realize how incredibly lucky I am to have a life partner that supports me no matter what the challenge, and I him.  I have a best friend that I can lean on or cry on whenever I need to.  No marriage is easy, I realize.  There are tough times in every life. There are days that I curse him and he curses me.  Let’s be real here. We are human. We have all of the normal married life stresses, along with one additional, huge element.


Having a devastating diagnosis of Fragile X Syndrome for both of our sons has added a huge layer of stress, responsibility, a shift in our dreams and hopes, financial hardship, an uncertain future, and yes, daily frustration. We are in this life together for the long haul.  Nothing is even close to the way we dreamed it would be in those early years……it’s better.

During this month, I will share our vision for the future as we face difficult decisions.

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

Wednesday, July 5, 2017

What the Facts Will Never Show About 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 Facebook or Twitter.  Let’s start with the things you will learn by going to the website fragilex.org or by reading posts from people on Facebook or Twitter.

-Fragile X Syndrome is the most common inherited cause of intellectual disability and autism and can range from mild to profound impairment.
-The gene responsible for Fragile X is called FMR1 and is found on the X chromosome. Everyone has the FMR1 gene on their X chromosome
-The FMR1 gene was identified in 1991.  The FMR1 gene makes a protein (FMRP) that is important in brain development. Individuals with Fragile X Syndrome (FXS) have a deficiency of this protein.
-Mutations or changes in the FMR1 gene lead to developing one of the Fragile X conditions.

There are a myriad of other things to know factually and scientifically about this genetic developmental disability, so I hope that some percentage of you will take advantage of the onslaught of information available during this month to really learn about Fragile X syndrome.

I consider myself to be highly qualified to speak on the subject due to the fact that I have two adult sons that were born with Fragile X syndrome.  Somehow, 26 years of living with it makes me a certified expert….or something of that nature. 

Sometimes, I find much of the information on the subject to be equivalent to blah, blah, blah, blah…..blahhhhhhhhh.  All of the scientific jargon is well and good, but it doesn’t get to the real picture of what our life truly looks like.  For that, I need to dig deeper and take a chance by opening up myself so that you can glean, perhaps, even a small taste of what it’s like day-to-day.

There are good days and bad days, much like every other human being on the planet.  But the bad days can be really bad.  Behaviors have been a big part of our life, although they have dissipated as our sons have aged.  Sleep problems are also common in children with the full mutation of fragile X, which in turn, causes the parents to be sleep-deprived and cranky.  Stresses about the children’s needs and the financial means to meet them are ongoing.

As a couple, our worries are unlike any other couples that we know—they are far-reaching, and will never end until we die.  Our children will be our responsibility until that time; day……………and night. We will likely never be “empty nesters” in the true sense of the word. Having a night out together as a couple can be a real challenge, let alone a weekend away.  Imagine…..finding a “sitter” for two adult men, ages 26 and 28 years.  Not an easy task.

Getting our sons jobs, helping them in everyday tasks, keeping them safe, coordinating appointments, mastering technology so that we can try to stay ahead of whatever device is necessary in their routine, and on and on and on and onnnnn…………..it can be overwhelming and exhausting.

But……we’ve found ways to cope with all of it.  It’s become our way of life and we’ve managed to create a pretty nice life at that.

In the midst of all of this lack-of-what-we-don’t-have, let me also tell you what my husband, Chris and I do have that facts will never display.

We’ve become members of a society that no one wants to join, but once there members are glad to be a part of. As a result of some stupid gene that mutated without our consent, we now have friends all over the world that I know we could reach out to on any given day, make a request, and it would likely be met with the words, “How?” and “When do you need it?” We share a special bond.

There have been many opportunities for our family to meet other families in smaller venues; more intimate opportunities like the one we just left.  Our family just spent 5 glorious days with two other families, in the beautiful splendor of Montana camping and enjoying every moment together. When we were together as families, these friends never asked why our sons do this thing or that. There was never any question about what kind of disability our son has, or why they are on a certain medication, or why they might open the RV entry door appearing solely in their underwear.  Nothing was strange.  No explanations were needed. No looks of disdain or embarrassment were exchanged between parents. It was so comfortable, like my favorite pair of aged, well-broken-in shoes.

Our children never felt weird around each other, never needed to have constant interaction, or even say a word to each other to know that they were there….just being themselves.

A simple 99 cent beach ball provided hours and hours of fun in the campground swimming pool for seven kids ranging in age from 10 to 28.  No questions were asked. The directions were simply understood and everyone was in the same zone. The feelings of joy abounded as each child did his or her part to play the game of hitting the ball back and forth. Each adult beamed with a smile from the skills that their own child and those of others, exhibited.  Perhaps there were newly found skills, or perhaps they were familiar.  It didn’t matter. A warm relief rose up in me knowing that my sons were having so much fun. It didn’t matter what genes they were born with. There was no attention paid to the things they couldn’t do. The focus was simply on fun.
7 kids and 3 Dad's with our 99-cent beach ball

During several sessions of swimming and beach ball hitting, another beautiful thing happened. Other kids without fragile X syndrome saw how much fun we were having as the ball volleyed back and forth between kids and parents, and they wanted to join in, too. There were small kids and even teenagers that paid no attention to any genetic developmental disability—they just saw fun and wanted to be a part of it. They were just being kids.

We shared three meals a day together, accommodating everyone’s taste preferences, without incident. Bedtimes were flexible based upon each person’s personal routine (routines are critical in our life!). No sacrifices were made. Parents helped each other’s kids with mindless effort. Stories were shared around the campfire as heads nodded in familiar adoration.

The daily feeling of anticipated-explanation and necessary definition-giving conversation that the public requires were absent during this 5-day trip.  There was no need for these dreaded words. It was all unspoken, familiar experiences. THIS was the antidote that we all relished.

This morning, we gave hugs, elbow-fives, high fives, and hugged again to close this visit of friends that came together through a challenging, devastating genetic developmental disability. We packed up the last camping chair, and prepared “Rocket” (our RV) for the journey home.  Then, we waved incessantly until we could no longer see the physical presence of these dear, special friends.

Now, as Chris skillfully guides “Rocket” southward toward home, we both feel content and fulfilled. This visit was just enough of a recharge to get us through whatever may come our way, until we can do it all over again.  It reassures us once again that we are never alone. The importance of this one thing is larger than I could ever portray.
Our older son receives a long-awaited, but promised, "hoodie hug" from our friend
  

Next month, we will celebrate 32 years of wedded bliss and we will continue our effort to face each day with resilience, love and compassion. We will do our best to provide our adult sons with a high quality of life through focus and determination. In many ways, I think it’s what pulls us all together even closer. We are not perfect, but we do our best most days. It’s not easy when a marriage has the added stress of a fragile X gene thrown in. As July ticks quickly by, I’ll share a few of the experiences we’ve endured in our marriage…………… so keep reading.

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


Monday, June 26, 2017

WHY I HATE JULY

This coming Saturday may be a normal day for most people. It’s a work week end!  It may be a Saturday summer day where one can enjoy the out-of-doors, maybe swim in the heat of the sun; a day with friends or family at a baseball game or kids sporting event….but for me it’s not that.

It’s July 1st.  The first day of the month where families all over the United States begin to “celebrate” National Fragile X Awareness Month……a month I never would have even known about had it not been for a devastating day back in 1991. 



That was the day that my husband and I learned that our beautiful baby boy, then two years old, had a genetic developmental disability that we had never even heard of….Fragile X Syndrome.  My husband and I sat blank-faced as the Dr. revealed that Fragile X Syndrome is the most common form of genetic intellectual disability.  As the words continued to spill out of her mouth, I felt tears well up in my eyes, not believing what I was hearing. It was an X chromosome abnormality that effects 1 in 3,600 to 4,000 males in the world, and our son had it. The future suddenly turned very dark and dismal.  It was also the day that we learned that our, then, 3-day old youngest son had an 80% chance of also having the very same diagnosis….and he did. 

We’ve spent the past 26 years learning something we never wanted to learn.  We spent the next 26 years wading through blood, sweat and tears in an effort to do things we never would have dreamed about during our 8-year courtship where we talked about our future like it was some kind of fairy tale. 

My husband of now almost 33 years, and I, have faced challenges that no couple, no human, should have to endure.  We’ve watched our handsome, seemingly normal-looking sons overcome the many obstacles that this damn genetic predisposition has laid before them. Through years of speech therapy to combat a significant speech delay, they’ve come out with only about 100 words. Through years and frustrating hours of occupational therapy to learn to cope with the extreme sensory defensiveness and lack of motor skills, nerves have been shattered. We all display scars from moments of uncontrollable meltdowns caused by behavioral issues that we had yet to know how to avoid. Financially, the marks of necessary treatment, trials, medications and hardship are evident in our bank book.

As a Mom, the grief, the guilt, the depression and pain are always hiding in the background, just waiting to emerge and engulf me like a prickly wool blanket wreaking havoc on every cell of my being.

But, this is now our life-long reality and we must deal with it.  We are dealing with it. Despite all of the day-to-day challenges we tackle, we deal with it.  What choice do we have?  We didn’t ask for this diagnosis! We can either fight through each day and hope that our sons will become happy, contributing members of the community….or we can lie down and let it win. 

WE CHOOSE FIGHT! 

I ask……no I plead with you to take just a moment of your time and learn about Fragile X Syndrome.  If you have just a glimmer of empathy in your soul….learn.  Our sons and all human beings with Fragile X Syndrome are worth your time…I promise.  They will enhance your own life ten-fold.


If you want to learn more about me and my family, check out my website Mrs Rogers World.  Hint:  We are doing just fine J Over the next month, I will attempt to portray the past 26 years and give you a sense of our world.  I hope you will follow along. I guarantee it will be worth your time to immerse yourself in our story.



Friday, April 14, 2017

It's Difficult to See the Blessings Through Tears

Mom and oldest son-Easter 1993

Holidays always elicit mixed emotions for me.  I often use holidays as a yard stick-a measuring implement to gauge the progress of my two sons.  Photos from past years stir up feelings of happiness or even sadness, good times or not-so-good times, making it difficult to immerse myself in the blessings of each passing year.

When our oldest son was just learning to walk, around the age of 2, I ignorantly imagined that he was ready to participate in a childhood rite of passage--dying and hunting for Easter eggs.  At the time, I remember thinking how wonderful it would be to organize the egg dyes, each one mixed with care, prepared in little matching plastic cups, ready for him to patiently dip each egg and wait for it to magically turn a bright color.  I purchased the necessary items, methodically prepared each cup, dropping in the little tablet, mixing it with the vinegar then stirring to reveal a new color.  I put a drop cloth on the floor, knowing a toddler could wreak havoc on a floor, me smiling in anticipation of what was to come.

The moment that I plucked our son away from his spot in front of the television, watching his favorite program, he began to wail.  I cradled him close to my body to reassure him that my idea would be much more fun than whatever he was watching, I was sure.  He quieted some. I effortlessly shifted my grasp to high under his armpits, as all Mothers learn to do, bent his little limp body to slip his legs into the highchair, and moved to set him down.  Sometime during the split-second maneuver, he flailed his arms, knocking over the perfectly placed cup of blue dye.  It fell to the floor onto the smooth cover, spilling over onto the hardwood floor.  As it fell, I inhaled sharply in a startled gasp, causing him to start, resuming the ear-piercing wail. 

My mood and my determination plummeted.  My disappointment rose to the surface. I paused, as I sat next to him crying, evaluating my own motivation and reasoning.  Nothing seemed fun about that moment at all.

Every emotion possible floods back to me as I hold a photo from Easter, 1993.  I am bent over attempting to convince our oldest to want to participate, search for eggs and to smile.  My own expression is hidden, but I can remember feeling a bit hopeless at my failed attempt.  His expression is not one of fun, either.  His expression exudes uncertainty. He was still in a horrible phase of extreme fear at the mere sight of any kind of grass or lawn, so I chased him around the patio.  He had no idea what we were doing when it came to searching for eggs.  He didn’t even like to eat eggs!  My hand was completely guiding him into some kind of unknown territory that simply scared the crap out of him. Nothing even remotely close to the word fun.

Another photo from Easter week 1997 elicits another memory completely.  My husband, Chris and I, sit relaxed and smiling in a little restaurant in the center of Paris, France.  He sits handsomely in his new suit, purchased just for this trip, and I, leaning toward him on his left, wearing a brown fitted dress with matching jacket, both of us smiling wide and looking our best. The photo appropriately gives the feeling of a relaxed evening among friends, sharing wine and good food.  On both sides, we are surrounded by some of the greatest minds in the world of Fragile X Syndrome, a genetically transmitted cognitive disability that both of our sons had been diagnosed with some six years earlier.  As I stare at the image, the emerging emotion is one of utter warmth.  Why would such a photo representing a devastating diagnosis, ever bring on such a positive emotion?

After six years of grieving, struggling, and questioning all things on the earth, this one single week proved to me that we were not alone.  We met professionals and families alike that knew what Fragile X Syndrome was. We were welcomed into the homes and at the tables of families just like ours, albeit in the romantic surrounding of Paris. They’d all had similar stories to tell, and they all shared them us.  We learned that there were Doctors that cared and sweated and aimed to help us.  I shared our family’s story.  The audience applauded with a look of familiar sadness in their eyes. 

Now, here our family is, 20 years later.  Easter weekend is once again upon us.  We’ve learned many lessons over the years, mainly how to make it meaningful for our family and do it in a way that makes sense for our very adult sons. 

Many years ago, I threw away all of the paraphernalia associated with egg dying, knowing that it wasn’t necessary to mark this holiday with an egg hunt.  The four or so years of tearful photos of both sons proved that point loud and clear.  So, we moved on, doing what wasn’t “typical” in order to live a happy life for us—not as dictated by the convention.  Yes, it was sad for me in the early years, seeing photos of other children with broad smiles on their faces, holding little baskets, dressed in finely pleated costume, as they bent to retrieve the treasured colored egg.  That picture is not a happy life for us.

This year, we planned the usual dinner in the dining room with napkins on laps, the air filled with smells of yummy choices that I have prepared with care.  But….there will be one new addition. 

About a week ago, as we reviewed the week’s upcoming events with our sons, as we always do, listing Easter and dinner and visitors, we had our own surprise.  Because it is helpful to alleviate any anxiety for our guys, I rattled off some of the familiar things to give ease to the dialogue; ham, potatoes, deviled eggs, jello salad, rolls, coconut cake, sit in the dining room.  I was met with the occasional, “Yeah”, or “Mmmmm” as I listed off each item.

In a surprising twist, our oldest who has limited verbal skills, immediately responded, “Eggs, there!” (pointing to the back yard)

I looked at Dad, who seemed as surprised as I was.  I looked at our son with that hopeful expression on his face, and said, “You want to hunt for eggs in the back yard on Sunday?”

He said, “Yes!” with all of the fervor he could muster.

I said, “Ok, I will put it on the calendar for Sunday.”

Now, at the age of 28, I wonder if he has any real recollection of those egg hunts all those years ago. It doesn’t matter. He wants it now, so I will oblige. There is no age limit for egg hunts.

Dad taking a break from "fun" with boys 1993

Sometimes it’s hard for me to see the blessings during any holiday as I am deluged with images of cute, eager faces on typical children enjoying a typical Easter celebration with family and friends.  As I gaze at my own photos of years gone by, though, I realize that all I need to do it look for blessings and I will find them right in my own midst.

When I look at the photos of our, now two adult sons, when they were very young, I realize how very far they’ve come since those difficult toddler years, I am in awe.  I’m in awe of their growth, yes, but also their courage, determination and perseverance.  They have far exceeded any expectations we had in those early years.


When I look at the lovely memories from our trip to France, knowing it’s been a very long time since my love and I have had a vacation alone, I still feel an overwhelming sensation of warmth, happiness and camaraderie.  These photos represent a real emergence into a world of fellowship that we’ve come to need and enjoy.  Back in 1997 there was no Facebook. Now we are able to share and console on a world-wide scale, knowing that we will NEVER be alone—no matter where we are.  That is one blessing among many that I am filled with.

To learn more about Cindi Rogers visit:  www.mrsrogersworld.com

Monday, April 3, 2017

Why I Don't Want the World to See My True Son


My morning started at 3 a.m. with him waking, heading straight for the bathroom, thinking it was time to get up.  Hearing him with the one ear that I keep open, I dragged myself to his bedroom, grabbed his pillow and “woobie” and guided him to the family room couch where I hoped he might go back to sleep.  I tucked the covers around him, then spoke the words I’ve spoken about a million times in the past….”It’s nighttime—not time to get up yet.  Go to sleep.”  I placed a nearby pillow over the lights that reflect from the DVD/VCR combo that sits directly across from the couch where he lay, hoping my efforts would incite further sleep.  I briefly scanned the rest of the room to make sure I had not overlooked any other sleep detractors, then slithered back to my own bed.

Of course, this kind of problem-solving may not seem strange, unusual, or even unconventional to one who has children.  Trying to get a child to sleep in their own bed or sleep regular or continuous hours can be a years-long project for a typical child.  But trust me…this is not normal or typical or conventional.  Our son is 26 years old.

Even though he is 26 years old, a diagnosis as an infant of fragile X syndrome and later an additional diagnosis of Autism, his genetic fate has been known to cause widespread sleep issues, as well as, on rare occasions, some pretty aggressive behavioral problems.  Our couch routine is a highly unorthodox evolution of trial and error that works about 80% of the time. The unorthodox or unconventional part of the whole thing is that he IS 26 years old.  A 26-year-old with a genetic developmental disability that will be with him the rest of his life……..and ours.

When we look at a diagnosis of fragile X syndrome or Autism, one person’s diagnosis does not automatically inject all of the “check list” items to every individual, but, in the case of our youngest son of which I speak, it has.  (To learn about the traits of fragile x syndrome, click here https://fragilex.org/fragile-x/fragile-x-syndrome/ or it’s relationship to Autism, click here https://fragilex.org/fragile-x/fragile-x-syndrome/autism-and-fragile-x-syndrome/).  We also have an older son, 28, with the same diagnosis, but he’s as different as night and day!  Go figure.

I am a very strong Mother who has taken particular pride in my ability to learn, create and teach specific methods and approaches that have, for the most part, afforded my two sons a high quality of life, despite this genetically passed predisposition.  Today, I blame myself.  Today, I am personally responsible for molding a negative outcome to a specific situation.  Me.  The advocate, mentor, teacher, friend. 

Suffice it to say that the couch routine did not work its magic this morning.  Another visit from him in our bedroom at 4 a.m. and then again at 5 a.m., strongly indicated that our efforts had failed.  The day had begun, despite our objections and diligent efforts. This small failure I can live with.  We’ve failed on this today, but we can live with it.  We’ve learned to live with it.  On a normal day, our son, given every other accommodation, could go through his day quite successfully, despite this one small failure. But, this is just one of many challenges we face every single day.

Three weeks ago, we, as his court-appointed legal guardians, received a letter stating that he HAD to appear before a federally appointed medical examiner to determine that he was still disabled.  That appointment was today, Monday, April 3rd, 2017 at 9:45 a.m. 

I will never get used to the idea that we will need to face many days when we are required to meet with this person or that person in order to prove that our son is disabled; question after question driving home the fact that he will never do this or that; never live alone; never be safe alone; never be married; never give us grandchildren; never….never….never. 

Each day we wake up, stretch our arms and welcome a new day when we can defy all of the restrictions on our son and strive to help him overcome every single little thing that tells him he cannot, when all we want to do it make it possible.  But we do.  Several times a year, whether it be when our kid with a disability is in school, or as an adult when we need this service or that, we are required to shift our minds toward every little tiny thing they cannot do by themselves.  This is one of those times.

For every other single situation or incident, I would do everything in my power, spend countless hours researching, planning and preparing him to have a successful outcome.  I would prepare a visual schedule, using symbols that make sense to him in his world using tried and true methods.  I would go over the schedule with him ahead of time and even make a reminder on his monthly schedule so that he would have time to allow his physical response to acclimate, essentially minimizing any negative behaviors.  In the past, I’ve done this to help him with his volunteer jobs, his self-care, his doctors appointments, social activities and every other conceivable part of his life.  Not today.

Oh, yes, I called 10 days ago, but was told that no information could be given in advance as far as what the appointment would look like.  Yesterday, as I anticipated today, my mind shifted back to when he was young and we didn’t know all the right things to do and use to help him.  My emotions remember well a certain visit to a doctor many years ago that resulted in him having to be restrained due to extreme aggression.  I also remember the fact that I had not prepared him in any way, shape or form for that visit.  Anxiety welled up inside me as I relived that day in my mind. How could I possibly make today a positive outcome with no information?  I have no idea.  I am no magician.  I am just a Mother with a typical brain and a pretty severely disabled son that does not understand many things in his world on a normal day, given no accommodations.

This morning, as the two of us got into the car, with only his backpack in tow, I minimized what verbal information I gave.  I had nothing to go on.  I didn’t know the doctor, I didn’t know the building, I didn’t know the process.  How could I help him? All of the things I had used in the past were not available to me today.  I had to give the one and only thing I knew.  I said, “Mom has to go talk to a lady.”  I carefully chose these words knowing that it is a new phrase that I have not used before. It wasn’t a predefined phrase with historically important meaning for him—no negative or positive connotations. I know he is listening, but he says nothing.  I know he trusts me, but at this moment I have no idea if I trust myself.  We drive in silence the rest of the way.

As we pull up and park in front of this unfamiliar building, he is making a noise that I am all too familiar with….a sort of nervous grunting noise.  Based on past experience, I know this is not good. 

I remind him that, “Mom has to go talk to a lady. Are you ready to go in?” 

He replies, “No!”  I remove my seatbelt, grab my purse and open my door, determined to push through.

I say, “Get your backpack. Let’s go see the lady Mom needs to talk to.”  He does as he’s told.  He’s still making the sound….that warning sound.  

We walk to the front door of the building, and I open it, waiting for him to go in first.  He enters the building and I point in the direction that we need to go….Suite 100.  I push the heavy door open to the office, step inside, and he stalls in the hallway.  I know he is visibly nervous and anxious about all of the things that he is unfamiliar with.  I do not know how to help him.  I don’t know the facts myself.

I wave him in and he moves into the small, stark, stuffy room, furnished only with a row of chrome-framed chairs with black vinyl covers and an old-fashioned candy vending machine—the type that you slide a coin in, turn the rectangle-shaped knob and the candy dispenses behind a little metal door. On one side is a glass-covered window behind which a lady sits.  She slides the window open and asks his name.  I give it, and she passes me a clipboard with four closely-filled pages of information.

She says, "This needs to be filled out in its entirety with every space filled in, even if it’s an N/A”. 

Before I can even sit down, he proceeds to push the candy machine back and forth on its carefully balanced pedestal, nearly knocking it over, causing me to inhale sharply.  I rush to it, reach my hand out and steady it upright, forgetting to exhale. He kicks me in the shin, then paces back and forth. I motion for him to sit next to me in a chair.  No dice. He is searching my face and eyes for some sign of what we are doing and when we will be finished so he can get back to his familiar place.  I move back toward a chair in an effort to begin the paperwork. He kicks me again.  I shift to miss another kick and ask him to sit once again. I know his behavior is only a form of communication.  Nothing I say can make it ok for him.

The window slides open once again, and the lady says they have a back waiting room and to please follow through the closed door.  I stand, motioning for him to follow with his backpack and he does.  We are directed to another row of chairs behind a half-partition.  I sit and he paces then kicks me swiftly in the foot.  I say a few words in protest, then he walks back toward the first waiting room, opening a cabinet on the way, like it was hiding a secret escape. 

A doctor appears, grabs the door of the opened cabinet, closes it and says that it might be better if we go back and wait in the first area until our turn—a suggestion I knew would only raise defcon levels higher due to the maximum number of transitions allowed for my son.

We barely reach the first waiting area when I feel another swift kick to my other shin. Some newly appearing papers sit atop the counter that leads to the glass window which he sees and instantly swoopes to the floor.  I see his head shift, and the candy machine is once again a target.  I gasp and reach to save it just in time.
 
Another lady suddenly appears and suggests that perhaps this kind of behavior is not acceptable.  I feel tears come to the bottoms of my eyes, and apologize, but remind her that he is unfamiliar with his surroundings and that I am doing my best.  She submits that the car might be a better place for him.  I agree wholeheartedly, as I swing my purse to my shoulder and grab the untouched clipboard.

He is never so happy as to exit that building and migrate back to the comfort of his car.  He is still anxious, but relieved to be “out” nonetheless.  He gets in the car, buckles up and sits, waiting to hear what is next.  I explain to him that I still have to talk to the lady, but I need to finish the papers first.  I stand outside the car in the fresh breeze while I attempt to fill in each space completely, leaving nothing blank as I was directed to do. 

I finish the paperwork, lock the car, leaving his window slightly ajar, and return to the office alone, still feeling a bit embarrassed.  I realize as I am walking in that these people have never met my amazing son; the one who loves his volunteer jobs; the one who can make a basket with his basketball team; the one who savors his life on earth set in the comforts of his rote, structured life.  But, I stifle those thoughts while I am escorted into a Doctor’s office to once again describe in detail, all of the things he cannot do.  I am forced to think of him as compared to a peer of his same age.  They will never see anything of him except those behaviors that he exemplified, characteristic of his genetic disability, yes, but not the real him.  The lovely, huggable, smiley, charming, him.

This is the him that I never want the world to see.  This is why I work every single day, and my husband works every single day, and those that love him work every single day, to make his world manageable……and wonderful…for him.  He is not the sum of these parts.  He is the product of those who love him and those who make the accommodations necessary to allow him the awesome quality of life that defines him.


I don’t want the world to remember him solely by what is written on the pages of documents possessed by government agencies that provide him the resources he needs.  It must be presented gently and carefully by those who know him day to day, week to week and year to year and teach him what he needs.  Those who love him are responsible for helping him put his best foot forward and overcoming every little challenge he is capable of overcoming.  There will be some winner days and some loser days.  This is the life of fragile x syndrome and Autism for us.  This is what we strive for every single hour of every single day.  This is the real fragile X syndrome and Autism.  As dutiful messengers, we will strive with hope and love in our hearts to broadcast on their behalf:

Our children are more than just the sum of their parts; good and bad; frustrated and passionate; successful and determined.  


To learn more about Cindi Rogers visit:  www.mrsrogersworld.com