Some mark this month as Autism Awareness Month. For me, it’s the anniversary of our diagnosis of Fragile X Syndrome (the number one cause of genetic Autism) 27 years ago. The other day, I also realized that I was 27 years old when we heard the dreaded words, “Your son has what’s called a full mutation of a genetically passed gene called Fragile X Syndrome, and there is an 80% chance that your newborn son will also have it.”
The significance of this month for me is a bit profound…..it means that every day, every month, every year after this will mark a tipping of the scales toward a majority…..I will now know that more than half my life will been spent in the throes of disability. That one word will define my minority past, every moment of my present, and perhaps be the driving force behind my future.
I vaguely remember my past. Some days I can barely remember yesterday!
I recall one particular happy memory as I sat in Mrs. Johnson’s 7th grade French class staring across the room at this really cute boy. My mind was dominated by thoughts of boys back then, and this one had my attention! His name was Chris Rogers. After one clever ruse with a candy bar involving Chris’ locker mate, I was able to gain his attention in return. Leave it to the stomach to be responsible for gaining a man’s heart.
We spent years contemplating our future together (eight to be exact) and conjuring up dreams. Those dreams were nothing out of the ordinary, but to me they were enough…..enough of the good stuff to make a happy life with the one person I wanted to spend it with…..marriage, a home, and two kids we could nurture and help shape into good human beings. We envisioned a future together after kids, walking barefoot on a beach holding hands with an orange-hued sunset in the background.
We took the first step with the vow of marriage in August of 1985…..almost 33 years ago. We immediately bought a little house that we made into a home, and where we still live today. Four years later, we welcomed our first precious, beautiful son into the world.
We never thought we could love something as much as we loved him. His little vulnerable, warm body enveloped us and made us even that much more motivated to do whatever it took to make his life as close to perfect as possible.
Our little guy ruled our every moment with his cooing and smiling and his need for our care. We gave him all we had to give…but that was not enough.
By the age of two years, he was not saying one single word. He’d already had numerous (too numerous to count) ear infections, to the point of needing a daily dose of antibiotics to keep them at bay. He was developmentally delayed in many other aspects, including walking. We sought treatment, therapy and experts to help us figure out how something so perfect could be struggling. These challenges were beyond our ability to help.
Suffice it to say that we did get help and we did get answers. The answer came in the form of those life-defining words….Fragile X Syndrome.
After a few months of further testing, it was determined that our newborn son would also have the genetic curse. Our lives would forever be transformed. I never knew that my own life would, from that point forward, be guided by the word disability.
Some four years later, after Chris and I got our “poop in a group”, I began a whole separate journey deep into the world of Fragile X Syndrome and disability. I joined the local support group; I read all I could about next steps, and we spent countless hours with therapists and doctors.
There have been years and years of challenges, pain and tears in order to help our sons reach all of the potential they can muster. These were the years that blurred the memory of those dreams we had all those years before. We lost sight of our own dreams and ourselves while immersed in the intensity of caring for the things we loved so much.
We are the kind of people that feel obliged to do everything possible until we can do no more and this situation was no different. We learned every method and approach we could in an effort to help our sons and the world around them. We spent countless hours helping others learn about our sons in an attempt to make their world bigger and fill it with people who love them.
Over the past 27 years, Chris and I have learned a thing or two about disabilities, Fragile X Syndrome and our sons:
-We know what an IEP (Individualized Education Plan) is, but that is only one-in-a-thousand acronyms that have become a part of our daily dialogue;
-We know that our boys CAN learn with the right application and attention;
-People affected by Fragile X Syndrome are incidental learners;
-Using a full scale of both visual and audiological methods to communicate is essential for our sons;
-Every behavior IS communication;
-There are some incredible approaches that work by some amazing experts out there, such as, ready-not-ready, first/then, pic sims, social stories, video modeling, side dialogue, all-done method, sensory support, peer modeling and the rhythmic approach. All of these are part of our daily life;
-Love can only carry you so far—we have to put in the work to affect change in outcomes;
-There is an amazing thing called sensory integration, and the recipe is magic;
-The relationship between the parent and teacher can be an incredible team, so hold on because you have 16 years of endurance exercises.
-The real learning is by way of the parents….not the children they raise.
All of these things were a very important part of our sons’ success toward living the quality of life that they currently live, but the true learning was for Chris and I. In hindsight, I believe some of the biggest lessons learned were involving us as parents. We had to see the reality in front of us and learn not to focus only on what was missing in order to move forward. We were backed into a corner and forced to learn how to cope as a couple, as partners and as teammates. The ultimate challenge for our marriage was in how to cope at different speeds and still keep pace with each other. Some of the more poignant lessons were:
-rearranging our priorities individually and as a couple;
-coming to terms with our immediate and future fate as parents of two sons with life-long disabilities;
-we desperately need to lean on each other through the tough challenges—we are the only ones that truly understand the circumstances;
-helping each other through the grieving process, only to be thankful we both made it to the other side;
-discovering that sleep is often way more important than sex when the boys were young—a fact that was a difficult reality, but this also gave us something to look forward to;
-learning patience was one of the most difficult, but most helpful skills we gained through our children;
-realizing that it was pertinent we rearrange our financial priorities in order to plan for our sons’ futures;
-learning how to give up the old dreams and make new ones.
All of this learning has taken us 27 long years. But, here we are…standing upright, breathing in and out, surviving and thriving. We are stronger for all of the experiences. We’ve made it this far. We learned how to have hope when we couldn’t see any. We’ve grappled with issues that none of our friends with typical kids will face. Now, we look to the future.
What does our future look like? It’s hard to imagine sometimes. We’ve done a pretty good job as parents in making a plan for the guys. If nothing else, we've done our best. We’ve spent lots of dollars and countless hours preparing for their living situation and made a plan for what will happen to them when we are gone. But, what about the time in between? In the past, we could not see anything very clearly when it came to that chapter.
Thankfully, now, Chris and I are able to see something….a glimmer of hope for a retirement just for us. There is still probably another 10 years of research, heartache and learning, but it’s there…..
It won’t look like our friends’ retirement. We won’t be able to pick up and go across the globe whenever we want. We won’t be able to go without worry or checking in at home (that’s where the guys will live when we retire—they will kick us out). Our children will always be our children--they have no plans of “flying the coop”. But, it’s a small, yet-to-be planned glimmer of a chapter without the day-to-day hands-on management of the guys’ lives.
We’ll take it. Together and as a team, we’ll get there. There is hope that the final chapter will not be all about disabilities. That sight looks beautiful from here.