So there I was at the TASH New England conference a month ago tomorrow, attending the second of the five or six workshops I was to attend that day. This session was on facilitated communication, or FC for short, which is a topic that greatly interests me, especially given what I do and who I work with.

I didn't know that much about FC, going in. I mean I'd read about it, heard about it - chiefly, the controversy surrounding it - and I'd seen people doing it, but this, I sensed, was somehow different.

I didn't know how right I was.

One of the presenters was a ten year old boy, and another was a good friend of mine; the third was a man I did not know but Karen did. As the presentation opened, Matthew, the ten year old, opened the floor to the audience for questions, after the panelists had introduced themselves, via their communication boards. It worked like this: they, with or without the help of a facilitator, typed into a communication device, all variants on a standard keyboard. Sometimes it took several minutes for a full sentence to be produced, at which point it was fed through a voice synthesizer, which "read" the answer aloud to us.

And what was the outward appearance of the people demonstrating FC? Well, they looked profoundly autistic, actually. They rocked, they hand-flapped, they made vocalizations as they typed that were not speech. They looked, in other words, like exactly the sort of people I was once told couldn't possibly be capable of intelligent thought or even emotion, much less share it with the rest of us!

I sat there in the back of the room, having arrived a few minutes late, trying to think of something intelligent to ask. What did I know about FC? What did I want to know? What was important, here?

Presently, a woman also in the back of the room raised her hand, and when she was asked for her question, she asked, "What do you like to do on the weekends?"

There was a pause, and after a few moments of furious typing, came Matthew's reply.

"Everyone always wants to ask the simple questions," he said. "Why don't you ask a real question?"

( I liked him immediately. )

Post-cut, and for the tl;dr crowd:

The trouble is that the school department is refusing to allow Matthew to use FC in the public schools. Matthew is capable of going to a mainstream school, and deserves to be afforded that chance. Right now, they are willing to allow hand over hand assistance with actual writing (for those who don't know, hand-over-hand is when someone physically puts their hand over the other person's and manually guides them through what they are doing, be it writing, using eating utensils, brushing their hair, getting dressed - it's been a long-accepted practice in occupational therapy - of course in those cases the object is to teach a person to do things mechanically, not to encourage free expression so much, except perhaps in the case of artwork).

It seems to me, and to Matthew's parents, that if hand-over-hand is allowed, FC should also be allowed. It is, of course, highly political in certain circles, the specifics of which may be gotten into later, by me or by others - but I felt at the time, as I do now, that it's important to put our heads together and see if we can't come up with any ideas for this family. His father gave me his email address and I promised to be in touch when I could with further ideas.

So far I've thought of contacting the ACLU (though I understand some sort of class action suit is being looked into), and trying to raise awareness among educators about FC.

FC works and is real. I've seen that clearly as shown by my friend here in Newport, and at TASH. If we gave people more credit - thought in terms of "What is possible" and not "what we think we know" - who knows what could happen, and how much people, who previously could not communicate with others as easily as most, could share with us and teach us.

Not to get all sappy on you. But I've seen some pretty incredible things happen when I've asked for help here before, and I'm hoping to see it happen again.

Let's get to talking and see if we can work a little LiveJournal flist/advocacy community magic here, and hopefully it'll accomplish things in the real world, as well.

Starting with Matthew. When he gave me that hug, it was pretty much all over for me; I knew I had to do what I could to help him.

I'll forward suggestions and discussion to his parents, and see if we can "get 'er done," as Chet in New Orleans was wont to say. Or at least get some good dialogue and thoughts going.

Thank you for any help or suggestions you can offer.

(By the way, don't let the fact you might not be "in the field" stop you from suggesting options; one of the things I've been fascinated to find out lately is that a lot of us know more than we think we do, if not always as individuals, then collectively.)

( Facebook status updates, Feb. 22 - April 19, 2008. In reverse chronological order, naturally. )

I will write a real update... sometime. I'm sure I've said that before, though.

... and I'm not feeling like writing much now, I'm taking a page from goldmourn's playbook. Sort of.

Yes, I've become addicted to the Dark Side - uh, Facebook. So, I give you my status updates. I find I'm into those sound bite things lately. And - they'll catch you up, a bit. Enjoy?

( The last 2 months or so of Facebook staus updates )

"Each of us here today will look upon a loved one in need and ask ourself the same question: we are willing to help, Lord; but what, if anything, is needed? If the Word is true, we can seldom help those who are closest to us. Either we don't know what part of ourself to give, or that which we have to give is not wanted. And so it is those we live with and should know who elude us. But we can still love them. We can love completely, without completely understanding.

...

Eventually all things merge into one, and a river runs through it. The river was cut by the world's great flood and runs from the basement of time. On some of the rocks are timeless raindrops; under the rocks are words; and some of the words are theirs. I am haunted by waters." - A River Runs Through it

The inevitable window shot -with reflection. mom said I could have the window seat this time. maybe I'll see fireworks?

This was taken in November, but speaks to how I'm feeling now. at PBI and checked in for an 8 PM flight. I suppose we should go through security, but as I just told mom I don't want to move. She does, though, so we will as soon as I hit send. 3, 2, 1...

Just a boy (my grandfather) and his dog.

Day 2 of the 24 marathon. Oddly, perhaps, neither Mom nor Milt had really heard of it before, and now they seem hooked.

This is why I was unable to watch the Pats game yesterday. I am triply glad they won, because Karen, who texted me updates throughout the game, told me it'd be m faut if they lost, since I'd watched the last five games or so with her and Neil. Man, that is a responsibility I didn't need. :P

Sue and Ethel.

JFK-PBI.

Mom won't give up the window seat. :( Very comfy JetBlue plane though - and the same flight I took as leg one of my first trip to NOLA. I will take that as a good sign.

Karen's new pets - not dinner.

I know very little about some of the people on my friends list, or those who just happen to drop by, for that matter. Some people I know relatively well. I read your journals, or we have something else in common, and we chat occasionally. Some of you I hardly know at all. Perhaps you lurk, for whatever reason. But you friended me, or wandered over, and I thank you for your interest in my words.

But here's a thought: why not take this opportunity to tell me a little something about yourself. Any old thing at all. Just so the next time I see your name I can say: "Ah, there's so and so...they enjoy the savory aroma of monkey brains a la mode."

I'd love it if every single person who friended me would do this. Yes, even you people who I know really well. Then post this in your own journal and see what gems of knowledge appear.

(If you think you've seen this before, you're right; you have. I've done it at least once before, a few years back. But it's always good to do it again - it's cool to be reintroduced, no?)