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What it Means to Me Now

March 27, 2014

“When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies.”
― J.M. Barrie, Peter Pan

Troy is giggling mischievously as he runs around the corner and pops out from behind the wall. The glint in his eyes is unmistakable joy, because as he emerges, Mary is laughing so hard she can barely catch her breath, celebrating by waving her little strips of paper excitedly in front of her. Happily, Joyce is behind Mary laughing equally hard as she feverishly flaps her fairy dolls up and down in the air, as she bounces up and down on her toes. They are all laughing. They are all rejoicing in each other’s joy.

These three children are autistic. You’ve probably heard about the newest autism rates released by the Centers for Disease Control. Based on data collected four years ago, 1 of every 68 children in the US has autism. Three of those happen to be mine.

And if you happen to be at all involved in the autism community, you have probably seen or heard the passionate cries from either side of the aisle about vaccinations, about curing these stricken children, saving them from being lost forever….. Light it up Blue for Autism Speaks, Light it up Red to sound the alarm, save our children, fix them…. There is so much, just too much. It makes my head spin….

Because I just don’t get it. I don’t see that my children and my friends need fixing. I don’t see where they need a cure for who they are. Because in our house we don’t declare victories over autism. We don’t try to recover our children from autism. We don’t try to separate them from a part of themselves that paints every single perception they have with its multicolored brush. And I believe our children are better for it. They are happier. They are more complete, learning to work with their super powers (as we commonly refer to their autistic gifts) instead of trying to hide them or change themselves to conform.

Sure, there are hard days. Lots of them. Life would be simpler, easier, and more “normal” if we didn’t have autism in our family. Life would be simpler if Troy didn’t have hour and half long meltdowns like the one he had yesterday. Life would be easier without the anxiety attacks that come on suddenly. Life would be easier if Joyce could better interpret the social cues in her first grade classroom. Life would be simpler if her language came a little faster and more clearly. Life would be easier if Mary could speak. Life would be simpler if Mary could play with her friends. Life would, indeed, be simpler without the autism.

But we would miss so much.

We would miss the satisfied smile that he gets when the tractor engine starts up and the mischievous glint in his eyes as he revs the engine on his dirt bike. We would miss the seemingly endless dissertations on the marvels of British and German engineering, and the crinkling of his nose as he processes new information. We would miss the pure joy that going to a good car cruise brings him. We would miss the boundless energy and the intensity with which he is able to pursue his passion…..

We would miss the dreamy way that she smiles as she regales us with another story of what her princess dolls are up to now. We would miss the imaginative way she compensates for her struggling language by seamlessly weaving scripts from various movies together in a sort of coherent conversation that for so long was the basis for much of her language. We would miss the bounce of her hair as she happily skips down the hall, and the way she is so open with her affections, and carefree in her expression of joy. We would miss out on the simple fact that fairies are real, and all that that means…..

We would miss the opportunity to watch the trees bend and wave in the wind and the leaves flitter and dance individually in the breeze, as the sunlight filters through the branches. We would miss the floating, bouncing droplets of water in the fountain, or the rush of the waterfall. We would overlook the beauty of the bubbles moving and reflecting the late afternoon sunlight in the aquarium. We would miss the gentle caress of her hands exploring our face, the quiet touch of her forehead pressed against our own. We would miss the joy of the dance, free and intense, as she smiles and squeals in delight, staring into our eyes….

We would miss so much.

There was a time, not so very long ago, when I asked my friends and family to place a blue light on their front porch. So many of them did. They did it not to support Autism Speaks, but to support us, to offer light in the darkness of confusion during those early days of our journey. I am still so grateful for the quiet support we received.

As I explained here in my post Community, my children have come to look to April 2nd as a sort of party day – a day when they celebrate that special part of themselves that makes them a little bit different. But as I have come to understand more about this community, I have found myself torn between wanting to celebrate this day in the way that my children have come to expect and enjoy, and realizing that those blue lights are somehow supporting a group that is hurting my children and the community of autistic adults that they will one day join. So last year I wrote this in Blue Lights and Rainbows, explaining why our house would look a little more like a disco.

And then the other day, my sister, wanting to do something to show her support, but understanding that after Suzanne Wright’s awful op-ed last fall that there was simply no way I could bring myself to ask anyone to support Autism Speaks, asked me what color light she should put up this year. After giving it some thought, I realized, my kids see this as a party day – a day to celebrate themselves, their autistic friends and everything that makes them, well, amazing. So maybe we should quit with the candlelight vigil attitude. Because, despite what Suzanne Wright may think, I haven’t lost these kids to autism. Autism is just one of the many fabulous things that makes them who they are. It brings challenges, but the gifts are still worth the celebration. So no more quiet blue lightbulb. Nope. Those Christmas lights that we just haven’t been able to get down yet (it’s been one heck of a winter. 😉 )…. Well they’re being switched back on tonight. Just because we’re not lighting up blue, does not mean we can’t still celebrate our fabulous family.

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2 Comments leave one →
  1. April 3, 2014 2:13 am

    That is very well said and so beautifully written. God bless you and your special and adorable children. 🙂

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