Tuesday, May 19, 2009

"Whoa - oh, what I want to know, is are you kind?"

On Saturday we went to a potluck barbecue at the Woodstock home of a friend who is an advocate, educator and activist and the mother of a teenager on the spectrum. All sorts of families with kids on the spectrum were there and I was filled with a feeling — such a very rare and delicious feeling — peace and acceptance.

The last time I had such a feeling was at the autism and advocacy conference organized by Jim Fisher at Fordham University. But this time was even better because both Sweet M and her father were along for the fun. Our entire family was filled with a sense of ease and peace.

Everyone at the potluck had been through the sorts of things we've been through with psychiatric and educational professionals, everyone had struggled to find appropriate educational settings, and everyone adored and supported their quirky, autie kids.

When Sweet M had enough interaction — playing with foam-covered swords and running across a dandelion-feathered lawn — she retired to our friend's bedroom and watched some television. She was joined by a boy about her age and when I peeked in on them, Sweet M and he were talking about their favorite programs.

Later on that evening Sweet M told me, "You know that boy I was talking to?"

"Yes," I said.

"He told me he likes Arthur . . . but he doesn't tell his friends so they won't make fun of him."

Sweet M likes Arthur, too.

She's an Arthur-and-Dora-loving girl in a Hannah Montana world.

And she'd talked with someone who has the same "problem."

Her tastes in television, books, and toys mark her as developmentally-different. The delighted way that she says, "Isn't he a cutie-wootie?" marks her as developmentally different. Even the high pitch of her voice, according to her one-on-one, marks her as developmentally different.

But on this one Saturday afternoon, none of that mattered as we were not encumbered by neurotypical benchmarks. On Saturday, she could be herself and be great.

At another point in the afternoon, our friend and a young woman on the spectrum were heading off to take a ride in our friend's convertible. The young woman, for whom it seemed that speaking was not the easiest of things, turned to me and asked if Sweet M would want to go with them. Someone for whom talking is difficult took the time to talk — in order to reach out to Sweet M.

I asked Sweet M if she'd want to go in a car with no roof and feel the wind in her hair, and she jumped up from the television in a burst of enthusiasm — sure I'd want to do that!

Later when I asked M about the ride she said: "It was so great . . . it felt like something . . . it felt like something like freedom."

Another guest at the party — an older teenager — had brought along a turntable, speakers, and a crate of old vinyl LPs. One of the LPs was an old Grateful Dead album that I hadn't heard since sometime in 1977, back in a time and place when listening to the Grateful Dead was cool. When "Uncle John's Band" filled the yard with the Dead's acoustic blue grass and rock blend, I was filled with happy sadness:

Well the first days are the hardest days,
Don't you worry any more, 'Cause when life looks like easy
Street, there is danger at your door.
Think this through with me, let me know your mind.
Whoa - oh, what I want to know, is are you kind?

What I've learned at autism's edges: kind is better than cool. In fact, kind is the coolest cool.

Listen for yourself . . .

Or if this embedded file is slow, go straight to the source.


Unknown said...

Donna Williams once said, famously, "Normal is being in the company of people like yourself". I'm a friend of your host, that weekend, and regret that we weren't able to make the several hours' journey that day and join you all.
A propos the Grateful Dead: here in Boston I once saw someone wearing a t-shirt with Hebrew lettering and a Grateful Dead logo at the bottom of the text. The text said (in transliteration, then translation) Ezeh tiyyul rahok u-muzar zeh hayah -- What a long, strange trip it's been. The story of my life, and my family's. I *so* want that t-shirt :-).

MothersVox said...

Phil! Hi! I wish you'd made it . . . it was a lovely day that has reverberated through my thinking all month long . . . Maybe another time we'll see you . . . with your Dead t-shirt!

Holly said...

Hi I found your blog on blogged and really liked this post. I can relate to it on so many levels... I have two kids on both sides of the spectrum and I thought about my son---who is afraid of being made fun of by his typical peers-- and how great it would be to have other kids--like him--in his life. What a great barbecue!

I blog over at www.fearlessfolks.com