I just registered to walk for our local “Walk Now for Autism Speaks“. I’ve known about the walk for a while, but just today got up the guts to actually register for the event.
The guts, you say? It’s a one mile walk around a race track. What guts does that take?
Well for me, a lot. When I first read about the event, I decided we weren’t going to participate. I had a million reasons as usual. I would have to schelp the whole family into Boston early in the morning. It’s the week before my first 5K and I didn’t want another thing to have to think about. I hate asking people for money. There would be a lot of people there, and I’d have to manage my family with the crowds. I hate porta-potties.
Of course, as usual, these weren’t the real reasons for my hesitation. I just wasn’t sure if I was ready yet to do it.
When my son was first diagnosed, we started getting a lot of information from our local autism resource center. One of the events they were promoting was a race/walk to raise money to support that center. Feeling bombarded and overwhelmed by everything, my husband and I decided we weren’t going to participate. The fact that it was happening on a weekend that we were going to be away helped that decision, but truthfully we couldn’t have done it even if we were around. It wasn’t that we were in denial, although there were still a few doctors questioning if our son had been misdiagnosed (our pediatrician thought he had ADD, our GI thought maybe it was bad reflux or an allergy). I think we just weren’t ready to announce to the world that our son was autistic. Or at least it seemed like that’s what we would have been saying if we participated in that fundraiser.
Fast forward to now, several months later, and it’s clear our son wasn’t misdiagnosed. Along the way our family has slowly come to terms with what his diagnosis means for him and for us all. Hiding in the shadows of our pride didn’t help anyone, especially our son. While still attempting to maintain our privacy, we’ve opened up more to family and friends about what his autism means and we’ve met some amazing people along the way. I’ve helped start a support group to reach out to other families in our town so we all feel less alone.
I write this blog, for goodness sakes. Can’t get more public than that.
But still the hesitation came when I saw the e-mail about the Autism Speaks walk. Why was it that I was still so uncomfortable about signing up?
It’s taken me until today to figure it out. As “out there” as I thought I was, through our group and through this blog, it’s still been within my comfort zone, surrounded by people I know or anonymous people in cyberspace. By participating in the walk, by asking people for money, by actually walking that day with my kids, I was no longer going to be a just a quiet voice in the corner. I would be out there with the potential to be photographed, interviewed, and questioned about my son. It brought me back to that first day when I walked into the gymnastics class just for kids on the spectrum. I spent that whole time wondering if we were in the right place until the end when I realized that we belonged there.
And it hit me. We belonged at the walk just like we belonged at the gymnastics class.
The Autism Speaks walk is the perfect place for us to feel like we’re among friends. It’s a one mile walk followed by activities and entertainment geared towards families like mine. No one there will care if we get there late because we couldn’t get out of the house on time, or have a meltdown on the track, or a tantrum leaving. I’m guessing we won’t be the only ones. This is also an organization that has given our family so much – it was the first place I went for information after my son’s diagnosis, and it was the place that published my essay about that gymnastics class. That essay is now included in their 100-day kit, which is sent out to families all over the world to help them understand what to do after receiving their child’s autism spectrum disorder diagnosis.
Now that I’ve registered for the walk I’m hoping that a few friends will join me too. If they don’t, I understand completely. If someone had asked me last week if I wanted to walk with them, I might have said no. We all need to get to that place in our own time. I don’t want anyone to feel like it’s something they have to do. For me this is something I finally WANT to do.
If you’re looking for me there, I’ll be the one trying to blend in with the crowd.
“Walk on through the wind,
Walk on through the rain,
Tho’ your dreams be tossed and blown.Walk on, walk on
With hope in your heart
And you’ll never walk alone,
You’ll never walk alone.” – You’ll Never Walk Alone by Rodgers and Hammerstein