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, read her full story at Becoming Mrs. Rogers

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