Things that give me pause in a busy world

February 2000
Originally uploaded by Citizen Rob

I just wanted to quickly post and say that I'm alive and well, just a little busy and getting caught up. We received a visit from Fox 26 Houston reporter Greg Groogan, who spent some time with Schuyler and Julie and myself, both here at the apartment and at Schuyler's school. I'm told that his story will probably run in early May and may be picked up by affiliates in different parts of the country. In your town, too? Well, perhaps!

It felt like a really good interview; Greg's got a lot of experience with special needs kids, both personally and professionally, and it absolutely showed. I've talked to a variety of reporters since the book came out, and some of them were exceptionally sensitive and good, but with Greg, it was almost disconcerting, being interviewed by someone who really gets it. I'm curious as to how it's going to turn out; I suspect it's going to be outstanding. When we were doing the actual interview, I almost got a little weepy a few times. Not he-manly at all, I know. I suspect Greg was slipping estrogen into my water when I wasn't looking.

There's so much I want to talk about in more depth, such as the fact that I did a little book-for-movie exchange with Dan Habib, the father and filmmaker behind the brilliant documentary Including Samuel. I'll have much more to say about this, but for now, let me simply say that if you have any feelings or questions about inclusion and mainstreaming for special needs kids, you really do owe it to yourself to see his film. We're not in 100% lockstep agreement (you can probably imagine how I feel about the page in the film notes called "Words Matter", about person-first language), but we come to the same conclusions about the benefits of inclusion for these kids. Not just for my kids, but for yours, too. See this film if you get the opportunity, even if you find yourself opposed to inclusion education. Or especially if you're opposed to it, really.

In my book, I mention the polymicrogyria online support groups that I follow. I never contribute to them, probably out of something akin to misplaced guilt for Schuyler's comparatively good fortune, but I read them religiously. In Schuyler's Monster, I wrote about the heartbreak when a parent comes on the forum and reports the death of their child. There was one a few days ago; I showed it to Greg when he was here, and I think it made a powerful impression on him. Well, of course it did. If you're not touched by reading a parent's words as they report the death of their three year-old as a result of repeated, nasty seizures, there's something dead in your chest. You might want to go have that checked by a physician.

How does a parent watch their child die? How do they make peace with that, with their seemingly cruel or indifferent God and a world with such monsters in it? How do you bury your own son or daughter? People have been telling us how brave and how strong we are, but that's a world of brave and strong that I've never lived in, and do not believe I am capable of. I don't breathe the air on that planet. People have said that God never gives you anything that you can't handle, and I'm here to tell you that's the worst kind of bullshit-on-a-stick there is.

Compared to the Godzilla-like monsters that snatch up little babies and consume them before their heartbroken parents' eyes, Schuyler's is the fucking Cookie Monster. And that's good enough for me, thank you very much.