Last night, I wrote this ..
983 of you liked it and a whole lot of you left comments on it. One of my favorites was this one …
Those incredible moments of true clarity. When you’re not sure who’s teaching whom.
I’m lucky enough to be a 40-something single dad with a four-year old son on the spectrum.
I hope I teach him half as much as he’s taught me.
And then there was one that made me think.
One that woke me at 3 a.m. with this post in my head.
One that started an avalanche of thoughts about how I view autism. About how we all do.
It was this …
One of the things I love too… those moments of complete ‘typical-ness’ that you never want to end.. and in holding on to that you realize NOTHING else in life is really so important… Raising a special needs kid has made me a better person in so many ways …
It was a beautiful sentiment. And one I might have written myself not long ago. But last night, it started the avalanche.
I began by responding with this …
A, I don’t think there’s anything typical about it really 😉
And then the questions began to thunder down the hill …
Why is it that we are so quick to demonize autism — to make it the catch-all for anything difficult in our children’s lives, in our families’ lives; how is it that we are perfectly willing to assign to it anything and everything challenging and yet, when we find something beautiful, it is either in spite of autism or gloriously representative of its ‘absence’?
As I lay awake, I thought of Godpsell — my baby’s beloved Godspell — of the first time that we took her to see it on stage two years ago, in the form of a dress rehearsal at a local playhouse. I thought of the joy and the wonder on her face seeing her favorite thing in all the world come to life. And I thought of Luau’s reaction to that night, and mine.
This was what I had written following the show …
It wasn’t until yesterday morning that I saw the status that Luau had put up on his Facebook page on Sunday night. He had written, “For three hours tonight, life felt .. typical.”
I had a very different experience. While I don’t take anything at all away from his sentiment, I have to say it was nothing like mine. For me, the night was anything BUT typical. He later told me that he felt like autism wasn’t there. That for three ecstatic hours, it had receded into the background and blessedly, finally, just didn’t matter.
For me, autism was front and center that night. Autism was part of what made the whole thing what it was. There is nothing in our world that compares to Brooke’s pervasive and abiding love of Godspell. Sure, Katie loves Taylor Swift and a show would be a hoot. But does she listen to her EVERY day, google her, watch clips of her EVERY chance she gets? Does she draw pictures of her in Halloween costumes, at the dinner table, riding on a rocket ship? Does she talk about her, reference her, create games and scripts and whole worlds around her? Is she literally imbedded in every aspect of her life? No.
I can think of nothing that comes close.
If Brooke were not who she is – autism and all – that experience would never have been what it was. For her nor for us. While I’m not ready to say that I’m grateful for autism in and of itself – not by a long shot – I am deeply thankful that within it there are moments like this. Moments of grace, moments of joy, moments when judgement is replaced by generosity and kindness and the world comes together to make something wonderful happen for a little girl who deserves nothing less.
Last night, when my girl kissed my arm then climbed into my lap, she forced the world, for one blessed moment, to stop spinning. The quiet, gentle intensity with which she approached me is not something that translates into words, no matter how talented the writer. I certainly am not up to the task.
The love that radiates from her — and the way that she expresses it — in overwhelming, all-encompassing bursts, is not remotely typical. It’s far, far more.
And I fear that if we spend all of our time chasing the Myth of Normal, we might just miss the reality of what’s in front of us.
Autism is hard. Sometimes it downright sucks. It challenges our kids and it challenges us. It can hurt like hell when we can’t take away their fear or their pain or figure out how to keep them safe or Make It Better.
But that’s not ALL that it is. It’s not one-dimensional. It’s not just the negatives. It can’t be. And if we allow ourselves to believe that it is, then how can we possibly expect that our children will not hate that part of themselves, no matter what we might tell them? How can we not hate that part of them too?
But what if we allow ourselves to see the rest of the picture? To see that the moments that we so fervently appreciate, the ones that we call time-outs from autism — aren’t? That they really are just as attributable to it as all the rest?
That when our kid plants a kiss on us and runs away, leaving the kissed spot feeling warm and loved – that’s autism too. That when our child is distracted by a small detail in a far too busy world and he draws our attention to it, allowing us to see something beautiful that we never would have seen otherwise, that’s autism too. That when our kid squeals with delight spinning or flapping or running in the wind, that his unbridled joy is autism too. That when she enjoys something with an intensity that we can’t begin to understand, that’s autism too. That when she laughs at a joke that no one else hears, that’s autism too. That when he remembers every detail of every train schedule in the Northeast Corridor, that steel-trap of a brain is autism too.
That when we become better people for parenting these incredible kids, that’s autism too.
I don’t want to whitewash it. It’s not all unicorns and rainbows. Not by a long shot. But neither is it all negative.
Because my girl has the power to stop the world from spinning. And that’s anything but typical.