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.
16 comments:
Wow, thanks for the great link. The Habib family lives an hour away from me and I hadn't heard of this documentary. The trailer was moving, I intend to check out the film.
watching babies slowly slip away each day is pain you never forget. thank God for schyler's daily victories!
It's not bullshit. You cope because you have no choice. The worst thing I could ever imagine was burying a child. I just knew I could never survive that. Well, joke's on me--I survived burying two. We don't know what we're capable of until we are faced with it. It's not bravery; it's just what is. People say "how do you go on?" Well, you look around and realize that there are others you love who need you and how selfish it would be to give up, and what a disservice to the one(s) who died.
There is guilt, sometimes, when you compare your pain with the pain of, say, someone like yourself and what you are coping with and then you realize there are no degrees of pain. My pain is big because it's mine. Yours is big because it's yours. Someone else is big because it's their's. But it's all just pain, and coping and survival and trusting that somehow you're doing the best you can with what "is." And in that coping you can often find surprising joy and hope...and yeah, even humor.
Thanks for continuing to provide such good information, links to other wonderful sites, and for continuing to let us all be participants in Schuyler's life.
Word, Rob. Now that I have a kid, I kinda understand casket-climbers.
Look at that little Grub! SHE'S SO TINY!
Great post, Rob! Looking forward to hearing more of your views on the person-first language. As the sister of someone born with CP, I came to understand years ago that often the PC language used to describe any number of disabilities is more for others - not the person who is disabled...or whatever one should call it now. :)
Yep. Monsters make me hate god. I think deep fried bullshit, too.
I just finished reading your book, and can't begin to tell you how much it moved me. I've worked with special needs babies, and yet have only a small understanding of how difficult it must be to be the parent of one of these little broken kids. But the courage you and your wife showed in fighting for what you knew was right for Schuyler is truly inspirational. If all parents had the strength you do, our society as a whole would be a much better thing. Thank you for putting it all out there.
I have trouble with that cruel or indifferent god who would allow the suffering of these little children. I've seen too much of it in my work. A loving and omnipotent being would not let children be burned and beaten, or let them go off to school healthy and happy and lapse into a coma by the end of the day, or any of the other horrors some of them endure. I suppose some people find comfort in their faith, but it doesn't make sense to me any more.
Rob, I'm intrigued by your comment that you don't post in support groups. I can certainly see your reasoning, and the need to be sensitive. And yet I remember when Schuyler was first diagnosed (yes, I've been reading that long), how concerned you were about her future. Seems like you might have wanted to read posts from the parents of other Schuylers as well as from the parents of those more severely affected, as a way of understanding the range of possibilities that existed.
Whether or not that's appropriate obviously depends on the site in question, but I figured I'd throw that out there.
Have just devoured your book. After kicking myself for missing your signing in Arlington last month (I'm in Grand Prairie), I stumbled into a Borders (which I don't even LIKE) and there was an autographed copy on one of their displays.
Have lurked on your blog since sometime last year, and am always awed by what you write, but having the book was AMAZING.
As are you, Julie, and Schuyler.
Rob, I am a speech therapist from Israel who augments the communication of children like your doughter using AAC systems for the last 18 years. I read your beeautiful love story and was impressed how accurate and moving it was. I think your book is a gift in that it encourages parents for children with "Monsters" not to loose their faith but to revive it day after day. Thanks for sharing it with us.
Did you know that there is an International association called ISAAC which brings together parents, users, and professionals using AAC to discuss and share the knowledge?I am an ISAAC member and benefit very much profesionally attending conferences , seminars and being all the time up to date.
Just saw Including Samuel last night here in Rochester. I didn't see the reference to "words matter" in the movie (must have missed it?).
I went with a few other moms and we all agree (quite cynical we are), that the older grades become much harder for full inclusion. One of my friends asked if Dan will be continuing his story as Samuel progresses through school and Dan said he hopes to pick it up again at middle school.
We enjoyed the movie but felt we were once again in a speaking-to-the-choir moment.
Yeah, it's not in the movie, only in the printed guide that was included with the DVD. Not sure if that guide is being distributed at public viewings of the film.
I love the look on Schuyler's face in that pic. "WHAT THE FUCK IS THAT!"
I love the look on Schuyler's face in that pic. "WHAT THE FUCK IS THAT!"
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