Sunday, April 14, 2013

This is how we do it

Today was an autism-packed day, friends.  Our annual 5K for autism started obscenely early this morning, and I put in the 3.2 miles, followed by another 1 walked, as I have for three years now.  While wonderful, these events are always a little sad at the same time, too.  Old friends are greeted once again, with apologies made for life having gotten in the way of get-togethers over the last year.  New friends are made, and I am glad to fill the roll of One with Experience--glad I can be that someone for another parent, as one was once for me.

Putting in the miles provides a time for reflection, as this run is something I often think of as my ground zero--it was here that I first really came to grips with my child's autism, three years ago.  It was here that I identified myself, with hand raised shakily in the air, as a special needs parent for the first time.  So much has changed since then--we are in no way in the same place now as we were--but I always remember that trembling, reluctant hand, and take a moment to appreciate what mind-blowing ground we have covered since then.

Tonight, my mom and I attended the opening of an art gallery little C was featured in.  The photographer whose work was on display gave a wonderful talk before the opening, describing the bond he formed with his autistic son through the shared creation of those images.  His words resonated with me, in a way I hadn't really expected.  I'm not usually the art-gallery-going type, really, so I expected to show, take few pictures of however Little C featured, and leave.  Instead I found myself wondering what that thing would be for us.  I want that bond--viscerally--that cooperation on a common goal, sans the step-by-step instructions for new things that he still needs at this stage in the game.  Maybe it's age, maybe it's that creative thinking just hasn't arrived yet, but I think, as I often do, that I can't wait to really share something with him.

Parenting an autistic child has taught me no greater lesson thus far than the value--and payoff--of patience, though.

It'll come.

I was able to talk to the photographer a bit after the gallery opening, and it was an interesting experience.  Somehow, he had found my blog, and in meeting me, exclaimed, "You're that writer!" (Or maybe it was, "You're that writer...?" Whatever.)  He asked, motioning to Little C's photograph, "So where are you going with that?  Are you writing a book?"

Recovering from the shock of someone actually referring to me as a writer, I fumbled for a response.  "I don't really know," I managed.  "I'm just experimenting right now."

We talked for a while after that, though, and I found myself reflecting on where I was going with any of this.  An experiment in personal expression, maybe?  Using this--all of this--as a way of exploring the intricacies of my children's minds?  Stretches of time go by that I almost forget Little C has autism.  A combination of how well he's doing in school, an ever-increasing grasp of language, whatever it is--sometimes we're so wrapped up in our daily chaos that I just forget, as silly as that sounds.  Then I'll trip over a train after the kids are finally--blissfully--asleep for the night, and I'll look down to find a nice neat line of Thomas characters, all positioned just so, as if to say, "Yep.  This is autism, and I'm still here."

It's in that moment that I'll take out the camera, and try to capture that.  I have dozens of photos like this--little moments of remembrance that I'm sure will only ever resonate with me.  As I snap, I wonder what it is that makes this ritual so fulfilling for him.  He doesn't need his trains to remain in place, as some kids do.  They're like his own little message in a bottle sometimes, saying, "I was here.  This is me.  Maybe it's not everyone's idea of normal, but this is still me."  As long a way as he's come, and as varied as his other interests are now, too, I want him to always understand that I value all of his interests, whatever form they may take.

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