Friday, January 31, 2014

Running For or From Autism?

As I have delved full force into raising funds for Dougie's Team, I have once again been plagued by questions about what to share and how much to share about our family's journey with autism.

When my son was younger, we kept very busy going to various therapies.  I often quipped that I hadn't met a therapy we didn't like. Our days were filled with speech, occupational, and music therapies not to mention play groups, Gymboree and more. 

Because all the literature and practitioners told us that the more therapies we got in and the earlier we got it, the better off my son would be. 

So, we went all in and lived a life devoted to the autism spectrum disorder. But, as time went on, we grew a bit weary of it all--the therapies, the diagnosis, the challenges.  And, after all, Alex was in typical classrooms doing typical things.  Maybe no one noticed more than a little quirkiness. Maybe we could all just ignore it and it would go away.

In the meantime, the world of social media exploded and suddenly, there it was--for all the world to see.  A person could post and brag and showcase his or her child's accomplishments in real time.  Not that I haven't done that, but I was always very careful about what to post lest anyone who wasn't around us a lot figure out that we wore the Scarlet A in our family.

That changed when I made the decision to run the 2014 Boston Marathon for Dougie's Team, part of the Doug Flutie, Jr. Foundation for Autism.  For to be honest about it, I had to acknowledge why Dougie's Team was my first choice and my personal connection to autism.

But, there was also a new wrinkle.  Now, my Aspie was a teenager and had very definite ideas about what I could and couldn't say about him. Plus, he deals with his own questions of how much he wants to disclose to others.  Luckily, he embraced my little project and even gave me permission to talk about him and his Asperger's when I did presentations for autism awareness.  (I gave my first one this week and, as I was going out the door he reminded me to first tell them how charming and intelligent he is!  And, a local TV station will be doing a feature story on my run so they want to interview the family--he is pumped about that!) 

 With that, though, comes the question of how others view Alex and our family.  I often wonder if others reading my Facebook or blog posts pity us or--even worse--smugly congratulate themselves because they don't have a child on the spectrum.  No matter what, we are incredibly blessed.  Alex has his challenges, but then again--so does every other child on the planet.  We don't know what the future holds for him, but no other parent knows that about any of their children.  All we can do is enjoy the gift we have been given of our son and work with him to help him grow into a mature and responsible adult.  (And, I have no doubt that is a challenge for parents of any teenager.)

This attention to autism has made us all "come out" again.  And, I'm realizing that's not a bad thing.  In fact, I'm enjoying reconnecting with people and organizations I haven't had contact with in a while.

And, that took me back to an article I wrote in 2006 that was published in Autism Spectrum Quarterly magazine.  I share it here to show that--this whole "in or out" question has plagued me for a while.  (But, as you read this, guess what I have on my wrist?)
"My Bracelet’s Gems of Wisdom"
Linda Brain Beck, M.Ed

I looked down at my bracelet today and was taken by the sparkle in the small, colored beads. For just a moment, I held up my hand and turned it ever so slowly to enjoy what looked like tiny decorated lights dancing across my wrist.

I thought about how far I’d come in the last few years, for you see, my bracelet is an autism awareness bracelet. And, I have alternately hated and marveled at it—just as I have at the disorder it represents. I didn’t plan to buy the bracelet. And, of course, even though I feared it during my pregnancy, I didn’t plan on having a son with autism either. But since my defense mechanism is to research, research, research, I had to learn as much as I could about autism spectrum disorders through any and all available resources.

So, I ended up at a national autism conference. And, while there, I decided to listen to the inner tapping—a definite light tapping, not an insistent knock—that was telling me I needed something to identify myself—to mark me in solidarity with all those other moms whose fears had come true; with the moms who know what it’s like to turn down a birthday party invitation because they just don’t have the energy to deal with the unexpected issues that will inevitably arise from their child’s behavior; with the moms who want so much to choose between soccer and Little League for their kids, but instead spend their time driving between this therapy appointment and that one because something has to make a difference; and even with the other moms who didn’t want to buy any kind of darned autism awareness bracelet either!
So, I did it! I bought it, but only after getting the seller to create a regular wrist bracelet out of an ankle bracelet. 

After all, the one she had designed for the wrist had larger stones. If I wore that one, wouldn’t it draw too much attention to the bracelet? I wanted to be in solidarity with the moms who knew, but I didn’t really want anyone on the “outside” to ask me any questions about it. Maybe if I got the small bracelet, no one would notice.
As if I could keep my membership in the parental “A-Club” a secret. No, my son always outs me—whether I want to be outed or not. And it started early—like when as a two-year-old he would run up to the salespeople in Costco and read their name tags. Or, when he was three, and thought he was doing the right thing by opening each conversation with “What kind of operating system do you have?” It’s in the toe walking and the special diet. It’s in the aide he has to guide him when other children are simply playing with each other. It’s even in the minutia of a voice that’s just a little too loud, and in a gesture that’s just a little too awkward.

So, I don’t always wear the bracelet. It doesn’t always match my outfit. It doesn’t always seem like a piece of jewelry that’s “me.” And, some days I just want to ignore the fact that it’s in my jewelry chest—just like I want to ignore the autism itself.
But, then, there are those other days-those days when I think my bracelet is the most beautiful piece of jewelry I own. Those are the days I’m reminded that my son is the most beautiful and precious gift I could ever have been given. And, those are the days, I find myself being caught up in the joy of a child—my child—the one who will never be perfect; but the one who is perfectly mine.
So, I’m thankful I purchased that little piece of wire with the tiny multi-colored beads, because it reminds me to look at life with a different perspective—and to enjoy the view—even if I didn’t ask to see things so differently. After all, we all need to be reminded to appreciate the people in our lives who are as different as the stones on my bracelet.
So, who knows? Maybe one day, I’ll open my jewelry box and in it will be a bracelet with BIG stones that I will proudly wear for all the world—and me—to see.

Catch you later at the back of the pack!

1 comment:

  1. Great Article about the anguish we face as parents!