Thursday, March 23, 2006

Staying on Top of the Grass

On Tuesday evening I heard Susan Senator read from her book Making Peace with Autism at Barnes and Noble. The event was moving and powerful in all sorts of ways that I will be writing about over the next several days, but one story in particular seemed to pull back the floodgates on the grief that autism families can experience around finding a place in the world for their child, and for themselves as a family.

Susan described how she and her family had gone to Disney World during a period when they were learning how to be together as a family in the world with Nat, their autistic son, a full and able member of the family. Standing in or near Ariel the Mermaid's grotto, Susan tells of tearing up, and then pulling it together, when she heard the Disney mermaid's song:

I wanna be where the people are
I wanna see, wanna see them dancin'
Walking around on those - what do you call 'em?
Oh - feet!
[ . . .]
When's it my turn?
Wouldn't I love, love to explore that shore up above?
Out of the sea
Wish I could be
Part of that world

If Susan had teared up at Disney World, I can assure you that a room full of folks sitting around on folding chairs in a Fifth Avenue bookstore were dabbing away tears just hearing her story.

One woman, sitting a chair or two away from me, wept quiet tears almost throughout the evening, telling us, during the question and answer, of how her now-grown son had screamed and screamed whenever he was placed on grass. Years later, when he was very verbal, he'd ask his mom if she could remember when he used to scream when he was on the lawn. He explained that he'd been terrified that he would fall through the grass because he couldn't see the bottom of it. He'd wondered, she reported, how people managed to stay on top of the grass instead of sinking into the seeming abyss at the base of the blades of grass.

Susan's story of Disney World, and this woman's story of her son's fear of lawns, helped me understand something from my own experiences with Sweet M. I remember the wacky enthusiasm that I had for making sure that we took Sweet M to Disney World, just as she had entered her new school that, while for LD children, has all the appearances and key features of a "normal" school — a red brick building, a playground, a cafeteria and auditorium, yellow school buses, a library, annual talent shows, yearbooks, and field trips.

While I have almost zero tolerance for amusement parks, and fairly strong objections to the entire Disney empire, I found myself almost maniacal in ensuring that we took a trip to Disney World, like a normal family, like an NT family. While so many families I know eschew Disney and other purveyor's of commercialized kid-culture, I was embracing it with a vengeance, to the puzzlement of not only my friends, but also myself.

We planned our trip for November, around Sweet M's birthday, when the crowds would be thinner. We've become connoisseurs of the off-season vacation — not only because we can save money — but also because we're likely to have an easier time with Sweet M if a place isn't bustling with people.

Like Susan's son Nat, Sweet M opened up at Disney World, and reveled in her ability to shake hands with Minnie Mouse and pose with Ariel in her mermaid's grotto. Going to places like Disney World, or Chocolate World, and Lego Land, just like NT families, is one of the ways that we find a way to stay on top of the grass.

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6 comments:

Kristina Chew said...

"Not sinking into the grass"--another metaphor for talking about life with autism--would that the grass (that Jim is gettng the mower blades sharpened to mow) in our front yard was a pool of water for Charlie to jump in anytime!

I'll confess, we're probably never going to make it to Disneyland/world. A little too much cultural critique in both of us----but then there's the familiar strangenes of the Jersey shore.

Wendy said...

My son doesn't like to walk on grass but I've always assumed it was a sensory issue. How sad to think he might be afraid of sinking into the grass.

I just started Susan Senator's book. I read her blog everyday..I figured I'd better read her book too!

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