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.
"Love isn't a state of perfect caring. It is an active noun like 'struggle.' To love someone is to strive to accept that person exactly the way he or she is, right here and now.”--Fred Rogers
To
learn more about Cindi Rogers, here book or her work with Fragile X Syndrome,
please visit:www.mrsrogersworld.com