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 3^rd, 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, read her full story at Becoming Mrs. Rogers