Saturday, February 26, 2005

CranioSacral Therapy

I find that deciding on what approach to take with autism is about 10% research and 90% instinct. There are so many treatments out there, and so many children with so many differences who all fall under the "autism" umbrella that it can be extraordinarily overwhemling. (If you have an autistic child, I'm not telling you anything you don't already know.)

We've been using Occupational Therapy for Sensory Integration Dysfunction with Bud for over a year, with wonderful results. We've used the Wilbarger brushing protocol (and still do), he sees an OT at preschool, and he has a one-hour OT session outside of school each week. But we've just started a new therapy that I've seen some (but not a lot of) mention of in the autism literature - CranioSacral Therapy.

CST was developed by an Osteopathic doctor (I've always been a fan of DO's over MD's, though Bud's pediatrician is and MD - but I digress), and is practiced by a wide range of practitioners - PT's, OT's, massage therapists, etc. There are a number of reasons why CST seemed like a good match for Bud, and the more I investigated the more the road led back to it. So, we're giving it a try. It's pricey, and not covered by insurance, but if it has positive effects it will (of course) be worth it. He's had two sessions so far - too soon to make any assessment of it's efficacy, but he LOVES it. He mellows right out and just melts right into the therapist. Our first session was last week and when I asked today if he wanted to go back I got an immediate "YES!" I'll continue to post updates on how it's going, and would love to hear from anyone else who has used it.

Monday, February 14, 2005

Coffee Buzz

You know you're addicted to coffee when:

you drive by Dunkin' Donuts and from the back of the minivan you hear your echolalic 5-year-old squeal "I'll have a medium coffee, milk, one sugar!"

Thursday, February 10, 2005

The Great Tubbies Mystery: Solved

It has taken four days, but I have solved The Great Tubbies Mystery.

One of the most pervasive of Bud's developmental disorders is language - the construction of it and the pragmatic social use of it. He knows thousands of words. He understands eveything. He has memorized the script of every kids video he has ever seen, and can pull out snippets of language from them that just about fit the situation when he's trying to "pass." But the back-and-forth flow of everyday conversation is an enormous challenge for him.

For that reason, trying to figure out what message he is trying to convey (and he is ALWAYS trying to convey a message) is like stepping into an Agatha Christie Whodunit. He can answer some questions, sometimes. But his answers - though relevant in some way to the matter at hand - are not always predictable responses to the question that was asked. (In his book Not Even Wrong: Adventures in Autism, author Paul Collins provides a great framework for thinking about this phenomenon. But more on that later.)

Anyway, Bud's latest challenge was The Great Tubbies Mystery. I should tell you that Bud is FANATIC about the Teletubbies. The Tubbies (or "the guys," as he calls them) are geared toward one- and two-year-olds, but Bud is well into year five and still going strong. They are his security blanket, his obsession, and his best friends. We have Tubbie dolls of every variety (and aren't we lucky that every six months or so our friends at Ragdoll produce a new line of these characters that are just slightly different from those already on the market - and in our house.)

Last Wednesday I picked Bud up at preschool and he greeted me at the door with a big smile and an announcement: "I want The Sound of The Tubbies! Is that what's a good idea?"

I immediately checked with all of the teachers in the classroom to find out what in the world he was talking about. No one knew. He hadn't been talking about it at school. But the request continued for days, "I want The Sound of the Tubbies."

I asked him for more information. "Is it a CD?"

"It's just a toy one."

"Did you see it in a book?"

"Okay." (loose translation: "Wow! They have a book on that??? Yeah, I'd love to get it!")

"What's the sound?"

"Of The Tubbies! That's a great idea! Okay, Mama?"

"Is it a doll?"

"Okay." Hmm... maybe he doesn't think of them as dolls. He sometimes calls stuffed creatures "soft ones," so I'll try that.

"Is it a soft one?"

"It's just a loud one. The Sound of the Tubbies."

"I don't understand, Bud. I need more words."

"The speaker. And Dipsy. In his belly."

This conversation becomes my life for days on end. It's clear that he really wants me to understand what he's talking about and is baffled that I can't follow him.

And then yesterday, at Target, the clouds part and the mystery is solved. There is (surprise!) a new line of Teletubbies out - BUT, this time around each of their little tummy screens have four pictures, each with it's own unique sound. When four Tubbies are lined up next to each other and one industrious five-year-old starts pressing with his chubby little hands flying at top speed, there are sixteen asynchronous sounds and a cacophonous symphony of Tubbie tunes - The Sound of the Tubbies!

He was not requesting an item; he was calling forth a happening.

Wednesday, February 09, 2005

Finding McSweeney's

Late last week I discovered McSweeney's Internet Tendency, and since that time I have been wasting inordinate amounts of time at my desk pouring through several years of postings. Apparently, McSweeney's has been around since 1998. Where the heck have I been???

Confronting the Blank Page

Right now I feel like I have sliver of a sense of Bud's world. I'm sitting here, a blogging neophyte, staring at a white screen that seems to be taunting me. My heart is racing. I'm in a state of flight-or-fight panic. I can barely stand to read the words I'm writing.

Bud has PDD-NOS, an autism spectrum disorder. We've been trying on this diagnosis for two-and-a-half years. Now it's like that sweatshirt-that-never-really-fit-right-but-is-the-right- weight-for-this-weather-so-I'll-wear-it-cause-it's-better-than-nothing. From what I have gleaned so far, the diagnosis of PDD-NOS doesn't really tell you anything about the individual who has it, because the "spectrum" plays out differently for everyone who has it.

For Bud, writing and drawing are challenging activities. He can hold the crayon and make the right marks, but he can't stand to look at the page while he's writing, so the marks are all disjointed and hanging out there in space.

Last week his teacher had a break-through. She went to hear Temple Grandin, an autistic woman who has written extensively about autism in a way that non-autistics can comprehend. Another teacher asked Temple about this not-looking-at-the-paper phenomenon (which I thought was unique to Bud, but I guess isn't.) Temple didn't miss a beat and suggested that the teacher start using cream or grey colored paper. Apparently, the light bouncing off the stark white paper is often too much for the sensory system of autists.

It never would have occurred to me. But now, sitting in front of an empty blog screen, I really get it.