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

One of my favorite sayings was that 'worry is never productive'.  I’ve said it many times over, say, the past 15 years.  My head knows this, but in reality my heart is missing the message entirely.  Today is the day that I abstain from saying this ever again….mostly because it’s not always true for me.  Worry, in fact, HAS been productive for me.  But, does it ever cease when you have two adult sons born with fragile X syndrome, and later also diagnosed with Autism?

Since April is National Autism Month, I think it is important to mention that Fragile X Syndrome is the single most common inherited gene form of Autism and accounts for approximately 2-3% of Autism cases (read the full article here: http://fragilex.org/2014/support-and-resources/fragile-x-syndrome-and-autism-spectrum-disorder-similarities-and-differences/).

Speaking from my own perspective, worry for my husband and I began long before our first son was ever born.  We worried about whether we would we love him/her enough?  Would we be able to provide all they needed until they could provide for themselves?  Would they have all 10 fingers and toes?  I believe these worries are fairly common when it comes to parenting….but that’s where our common thread with parents of typical kids ends.

Once our oldest son, Jake, was diagnosed with fragile X syndrome at the age of 2 ½ (coincidentally our youngest was just 3 days old at the time and we were told there was an 80% chance he, too, would have it—which he subsequently did) with the most common form of genetically passed developmental disability, our worries shifted into overdrive.  Not that we hadn’t had any worries until the age of 2 ½, of course!  But, now the worries were pretty rampant due to the complexity of unknown factors. 

At the age of 2 ½, Jake was not saying any words.  One of our central worries at that age was whether he would ever speak at all!  He had barely learned to walk by this age, too, which steered our worries toward the unbearable thoughts of physical disability.  Day or night, we worried and fretted over things we had no idea how to solve or even which way to shift those worries into something productive.  Wrinkles began to appear in places they had never been before.  Sleep became less and less as we lie awake after hitting the pillow exhausted from our day’s work and worry.  We ran from one expert to another trying to dispel one worry or another.  Sometimes we got answers, and sometimes we just had to wait and see.  This caused further worry. 

These symptomatic worries shifted to more outward worries as the boys got older.  Behaviors were more evident and would often cause stares and embarrassment for my husband and myself.  Both boys would flap their hands in response to joy or overwhelm.  They would make loud noises when they were happy or unhappy.  Stares and looks of disapproval shot our way.  Then, we worried about what others might think of us….might think of our parenting skills….might conclude in their own judgement of our sons.  Our own energy and demeanor would shift, causing us to often exit the store, restaurant or museum at a brisk pace. 

Fast forward to today….both of our sons have been diagnosed with a developmental disability for 25 years.  Yes, they still have challenges, and yes, we still worry.  Our worries now center around tough subjects like, what will happen to them when we are gone? Will there be enough money to take care of their needs forever?  Who will care for them and can we trust them?  All really big, difficult, scary worries.

We’ve been able to affect the outcome of many of our past worries like whether or not our sons could work at a job (the answer is yes); whether they will ever have friends (also a yes); whether they will ever be able to sit and eat a meal at a restaurant (this has become a “hobby”!); whether they will in fact ever speak (they each say about 100 words); will they ever successfully be able to travel and enjoy a family vacation.  That’s the one we’ve worked on for years….family vacations. 

At a young age, we wondered if we’d even be able to leave the house without one of them melting down and spoiling the whole outing.  As parents, we knew we didn’t want to spend every last minute staring at the walls of our home, but how could we manage a vacation with two sons having all of the needs and behaviors ours did?!  We needed to find a way to make the boys’ world's bigger!  We needed to be able to teach them how to tolerate the world around them so that they could see more than just our own wonderful community.  That’s been a long-term goal for our family.  I’ve blogged many times about it, and I’ve even written a book telling some of the stories about our adventures, so it is obviously important.
(To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers)

It’s taken many years, but, having visited all 48 of the lower U.S. States via our RV, we have come to a turning point, and a momentous time of worry….we’ve made a goal to visit Hawaii in November, 2016.  We’ve arrived at step 3 in the master plan by doing our first plane ride with the boys on our way to reaching the island of Oahu.  If you want to catch up and read about the first 2 steps click here:
http://mrsrogersfxneighborhood.blogspot.com/2016/01/its-lofty-goal.html

We obtained TSA Pre Check passes a few months back, then we arranged a practice session at our local airport.  Those steps went well.  Then, it was time for our first actual flight.  We chose Phoenix as our destination because we have family there and this helped fill the idea of providing a motivation for the guys.  As a planner myself, I booked the tickets back in January…ya’ know….just to give us more time to worry, and worry we did.  I know I sure did! 

Having traveled quite a bit myself, I am keenly aware of every step a person has to go through in order to board a plane, ride in a plane, depart on a plane and get logistically situated in a new environment.  I consciously broken down each and every step in my head in order to visualize my two sons doing them.  Then, I worried about the parts that I could not control, and there were lots of them.  This very fact is the thing that kept me awake for the past 3 months. 

My brain started out worrying about the chaos that takes place when one goes through security screenings.  Would my guys be able to tolerate just standing in the excruciatingly long line?  Would they be able to tolerate taking their shoes off if asked?  What if they were asked something?  They likely would not be able to answer due to their cognitive disability as well as their lack of language.  What if they got upset during the screening?  We would, of course, be there with them, but what if we could not bring them back from the depths of a meltdown?  My standard course of action is to create a visual schedule showing the specific steps that would happen based solely on what I knew to be true, minus the stuff that I had no idea that could happen.  My brain didn’t even reason with the fact that we had already gone through a successful practice session…brains don’t work that way when you are the Mother of a child with a disability.  Insert worry, subtract reason.

Having never flown before in their life, I worried that our sons would not tolerate the pressurization that occurred during takeoff and landing of the airplane.  What if their ears had some kind of reaction to this type of sensation?  What if we were already in the air and they began to scream uncontrollably so that my husband or myself could not calm them?  This was a very realistic worry.  I attempted to push it out of my mind late at night when I was trying to fall asleep and all my brain wanted to do was think about these things.  That, and all of the logistical things that I knew I had to think about in order to make any trip successful.  We’d pack DVD players, PSPs, Ipods, DVDs, snacks, sick bags (just in case), chargers, battery back-ups, chewing gum, all the plugs to charge everything, their favorite clothing, essential oils for calming, medications, passports, boarding passes and on and on.  The list grew and grew. 

The day finally arrived for our 1 hour 50 minute flight from Denver to Phoenix.  The visual calendar said so.  I did what worked for us and revealed the “big secret” just the night before so as not to encite anxiety over time.  We went over the visual schedule for the day together giving a verbal word for each visual photo. Everyone seemed relaxed and prepared.  I tried to squelch any worries from rising to the surface and appearing on my face.  The time for worrying was past and it was time to reap what we had sewn. 

Three days of visuals prepared and waiting

We persuaded both guys to practice pulling their own little suitcases around before we left the house.  They would be expected to help lug the cases with their weighted blankets in them, for sure.   Each one loaded their own bag into the back of the car, loaded themselves and off we went.  Uncharacteristically, anxiety seemed to be missing in the air of the family.  We parked and headed into the airport. 

I could see the traces of our previous practice as each of our guys marched confidently toward the security check point.  They appeared to know what to do by handing the agent their passports and boarding passes.  So far, so good.  We stepped into a line and awaited our security screen.  I spoke to a gentleman and asked for assistance, which they provided.  Overall, everything went pretty smoothly.  We were detained a little bit by the odd perspective that the weighted blankets projected on the security xray screen. (note to self: check these items in the future).

We proceeded to the elevator instead of the escalator because I had already worried and resolved that it would be too difficult for the guys to negotiate the bags while on an escalator (yay brain!).  We boarded the train to the concourse…..no anxiety yet!  We all walked together to the gate and found seats.  There were quite a few other passengers waiting for the flight, even though it was over an hour from departure.  We passed the time by listening to DVDs, ipods and having a snack.  At one point, Joe, our youngest, seemed to need some movement, so hubby took him for a walk to the restroom.  The time to board finally arrived, and we took the opportunity to board with those that “need a little extra time”.   We took our seats and buckled in…just as we had practiced (more thanks to Mister Rogers!). 

I sat with Jake and Dad sat with Joe in front of us, two-by-two.  A little flicker of worry passed through my head as I knew the “unknown” part was upon us.  How would the guys do during takeoff?  I took a deep breath in and let it out.  I made sure they each had a piece of gum and their headphones on.  I rested my head back on the headrest and sighed.  I heard no sounds.  I felt no worry.  Suddenly, I realized that the time had passed without incident.  In fact, the 1 hour and 40 minutes (we had a tail wind) passed so quickly, I didn’t even have time to read my book that I had brought along! As we descended into Phoenix, Joe shouted, “Look! The city!”  I swallowed back tears.  Worry averted.

We all enjoyed family for two days, and then it was time to worry about heading back home.  On the morning of our scheduled flight, I produced the visual schedule that I had prepared for just this occasion.  I pointed through the steps, providing a verbal reinforcing word for each visual step, including “go to airport”, “get on plane”, “buckle seat belt”, and “home”.  Neither one of the boys produced any outward signs of anxiety over any of these previously learned steps.  This was the sign I had been waiting for to prove that the words “airport” and “airplane” lacked the negative connotation of a past negative experience.  We had done it.  They were ready.  Everything we had done to this point produced only a positive outcome….I could subtract many steps from the worry list in my head.  I needed only worry about the things that would become new as we move forward.  What a relief.  What an utter gargantuan relief!!!

Of course, we made it home in one happy piece.  Everyone survived…even Mom and Dad.  What did we learn?  Well, the same thing we always learn!  Somehow, things we worry so much about, work out in the end.  But, the fact that I/we thought through each step, each scenario, each anticipated morsel, helped us plan and methodically approach this HUGE step in our ultimate goal and make it doable for our sons. 

Will we get to Hawaii?  We will continue to push forward…one worry at a time.  It’s a huge, long flight to Hawaii….7 hours!  That’s huge compared to the 1 hour 50 minute flight.  Oh, and now I am worried because a few days ago when I checked flights from Denver to Hawaii, the price had doubled since I checked in January.  I am worried because it may be out of our price-range.  My worries will carry on.

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

"If we expect our children to always grow smoothly and steadily and happily, then we're going to worry a lot more than if we are comfortable with the fact that human growth is full of slides backward as well as leaps forward and is sure to include times of withdrawal, opposition, and anger; just as it encompasses tears as well as laughter."~~Fred Rogers

To learn more about Cindi Rogers, read her full story at Becoming Mrs. Rogers