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!)
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?)
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.
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.
Catch you later at the back of the pack!