The Family Room

Free Association

There's something about this kind of writing that seems sto express the way the brain works. I started this weblog back in February 2007, at a point when Isaac's speech had really begun to kick in and we were in about eighteen flavors of crisis about what it all meant. 

He liked to spin a lot then, and would often twirl or demand that his father or I pick him up and spin him around. "He never gets dizzy," people would marvel, as if he had accomplished something special. "Yeah, that's actually not so great," I'd say if I was in the mood for a little Sensory Integration 101.  "It means his brain isn't fully receiving the signal that his body is moving." 

Isaac doesn't spin much anymore, and when he does, he gets dizzy much more quickly. Those pathways--some of them, anyway--have found each other. 

I read an article by Stephen Johnson in today's Wall Street Journal about how E-Books will change the way we read, and I can already see so many of these patterns in the way I communicate.  I might be writing about Isaac and thinking about how, lately, he loves bus-riding, and it'll remind me of Ben and his recitation of all the Thomas trains. 

Or I'll be thinking about Nik and his unexplained pain, wondering why the medical world has so much trouble tracking down the source of something so powerful and debilitating. Or what GP or Leelo is doing today. Link, Link, Link.

It takes me on a journey, and if you're game, it brings you along for the ride, even if you don't choose to get off at every stop. It's not a hike; it's a meander, and you never know exactly where it'll lead.

And so, as I see my own world increasingly linked, I see evidence that my son's brain is developing associations as well; some good, some funny, some not so good. I see the unexpected joys in his particular neurological arrangement, and the pain as he crashes against his anxieties over and over again. They're always mostly the same, and sometimes a little bit different.

As J. remarked last night, Isaac is increasingly able to work through his feelings and come out the other side. It may not always be pretty, but bit by bit, those linkages are giving way to new and finer strands and tendrils and fronds and branches. More paths, more possibilities; the power of a network unfolding.

Like Johnson, I won't ever be able to give up the discipline and pleasure of a straight read through a big book: it's who I am.  But I can't help wondering whether there will be some evolutionary impact to this brave new link-rich world, and if we, and our kids, will be the better for it. 

Postcards from France

We had friends over last night, and talked, you know, about things.  One of the odd paradoxes we discussed is the fact that children on the spectrum (most children, actually) crave a sense of structure and like to know what's coming next. At the same time, our kids have a particular tendency to become anxious about transitions, even if they are transitions to something they dearly want.  So it is sometimes a delicate balancing act, the act of telling. Or you can call it by its real name: a crapshoot.

So I, uh, didn't really tell Isaac that we were going to have dinner guests. When the doorbell rang, he became a bit agitated, naming his regular babysitters in near-chronological order and insisting that it wasn't them. And it wasn't.

We set up the kids in Isaac's room with trains, cars and books, and, after a while, left them to play in proximity if not actually together. After a while, I heard a familiar pound-pound-pound down the hallway. One rosy cherubic face popped in, grinned, then another. Then pound-pound-pound down the hallway again.  And back. "We're chasing us!" Isaac crowed, clearly delighted with himself and his companion. I was so bowled over at the spontaneity that I couldn't have cared less about the pronouns. 

It didn't last long (which the downstairs neighbors probably appreciated), but it was progress. Oh, and I made Kung Pao Chicken.

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If you're looking for two beautiful things to read this week, I recommend Paul Collins' piece in Cookie about how to include a child with autism in your birthday parties, and my friend Kristen's piece about what lies beyond awareness.

Off to the kitchen. Grandpa and Nonna flew in today from the East Coast (they hit the jackpot; it's a gorgeous 76 degrees here) and I am about to crack open a bottle of Albarino and make shrimp with snowpeas for family dinner. 

P.S. If you're wondering what the heck the title means, check out this post from MOM-NOS. Classic.

Here We Are

A year ago, I sat on a plane on the first day of Autism Awareness Month and watched five straight hours of CNN coverage. I remember being deeply impressed by the commitment of the CNN staffers, some of whom had children on the spectrum themselves.  

One segment was about a center in Qatar for children with special needs. A few weeks later, I received an email from a woman who'd read one of my posts. She lived in the United Arab Emirates and was concerned about her son; so much so that she contacted a stranger in the United States for advice. 

I didn't know where she was exactly, but I told her about the Shafallah Center in Qatar. To this day I have no idea whether they were able to help her, or if she even contacted them, but it reminded me of how small the Internet makes the world. With so little really known about autism, our kids' lives are deeply affected by information passed from one of us to another: in a word, folklore.

Here we are again: it's Autism Awareness Month, and we're going to be hearing a lot of folklore in the next 30 days. It'll be the usual drumbeat of causation theories, therapies, inspiring, grim and sensationalist stories and semi-celebrities flogging their books on Oprah. 

Makes you want to check into a hotel, throw a blanket over the TV and sleep for a few weeks, doesn't it?

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Tonight as I tucked Isaac into bed, I couldn't stop thinking about the onslaught of autismania we'll be seeing this month. I looked down at Isaac as he sleepily clutched his stuffed bunny, and I thought if people really understood the incredible strength and beauty and humor of our kids, how hard they work, what the world looks and feels and smells and sounds like to them, we wouldn't have to spend so much time fighting for awareness, and beyond that, acceptance.

Enough Rain Man, enough sensationalism, enough scary and irresponsible stories. Enough. You've heard of autism: now look at the kids.

Here's mine. He'll be six this summer, he loves buses and pizza and reading and climbing, and he laughs when he learns new words.

Now. Tell me about your kid. Your brother or sister. You.

If you are on Twitter, I invite you to post a photo of someone you love with autism. At the end of the post, tag it  #waad (for World Autism Awareness Day) and #hereweare.

Here we are.