Friday, September 01, 2006

Been A Long Time

A month has passed and the summer has ended. Bird started back at preschool through the local IU. His teacher is fantastic and we all missed her. Though his experience with his summer placement was terrific, having him go back to preschool feels like we are sending him to his second home.

The summer program was at a new autism program in Hanover, PA called The Amazing Kids Club. The club is specifically designed for kids with autism. It has an arts-n-crafts room that features bumpered support poles through out the room and pretty neat seating. Just down the hall is an indoor exercise room with a trampoline, a balance beam that can be raised and lowered at any end and in all kinds of configurations, and these awesome tricycles that have huge exercise balls as seats. He had to balance on one to reach the pedals! Past there is a toy room with a great Thomas the Tank Engine set, another room for snack, and the last and best room - the Sensory Room. I'd love to spend a little time in it.

The Sensory Room is white, but as with all of the other rooms, the lighting is soft and can be adjusted with a dimmer switch. In the far right hand corner is a set of pillow, huge white, probably 4'x4', pushed up against two mirrors in the corner. Those mirrors are centered around a tube of water that can change color using light filters. Push a button and the tube fills with bubbles. In another corner is another large pillow surrounded by light strands that fall from the ceiling. Those strands cascade around the person seated on the pillow and change color as the colors "fall". There's also a platform swing, large enough to lay on. Other areas are there too, and the total effect is so stimulating that Bird was only allowed to spend about 10 minutes a day in there. But couldn't you imagine the swing? What bliss!

It was a great place and one that the psychologist who prescibes Bird's treatment really likes. In fact, she tried to cut TSS hours in order to keep him with Kids Club. Her logic was that 25 hours of TSS a week plus 10 hours of preschool might be too stimulating and causing the troublesome behaviors we've been seeing (some biting and kicking). She proposed her solution, failing to realize that her logic was flawed. Really, what she was proposing was creating a program that would be more taxing on both him and the family. Getting Bird to Kids Club was a 40 minute trip, one way. Getting him to preschool is also 40 minutes, one way. That's well over two solid hours of travel four days a week on top of 10 hours of preschool and up to 15 hours of the other program. That's up to 32 hours scheduled over just 4 days. So, his therapy would be his full time job. He's four. We ended up sticking by our guns and keeping the TSS/preschool combo, and I'm pleased about the arrangement.

If the psychologist had been able to provide some sort of evidence as to why her solution would be more effective, we could have considered it more. When I asked her for her rationale, she confessed she didn't really have one. She was simply going with her gut. That seems to be all we have. I'm hoping to dig up a recent study that was released about the use of TSS's and its benefits. It would be the first one I've heard of anytime recently.

The dearth of information on the outcomes of these various therapies is alarming. But it's getting better. Mark Sundberg is in the midst of a longitudinal study that tracks the acquisition of language in typical children so that he can propose a better approach to teaching autistic children. Gail McGee at Emory University is also researching a better approach to teaching language. Better than ABA (Applied Behavioral Analysis ala Lovaas), probably better that VBT (Verbal Behavior). Nevertheless, what strikes both me and my husband again and again is that all of this is just a crap shoot. We're sort of sure that all of the things we are doing are good, based on anecdotal evidence, but no one's really sure what works best and whose theory is the right one to use. I don't think it's going to change anytime soon. That kind of sucks really. If this were a truly medical condition, somebody would know what to do by now (granted, our behavioral specialist assures me that nothing we do will permanently damage him).

Still, my standard soap-box rant remains the same - not much movement since Skinner published on verbal behavior in the 1950's and Lovaas published on ABA in the 1981. Those are the granddaddies of autism treatment, the two on whose shoulders an entire field of therapy has been built. There's some overlap in places and people call therapies by different names because they are slightly different from one another (we're often talking just nuances), but it all goes back to these two guys, to breakthroughs that happened decades ago, regardless of the onslaught of children like these. I'll save my other rant on the welfare mess that's to come for another day.

Welcome back to school, folks!


At 2/14/2007 9:17 PM, Anonymous another PA mom said...

Libby I am also a mom of an autistic child in adams county PA. My son just started the Amaizing Kids Club in september. We love it. We are now entering the world of the IU since he turned 3 in Jan. I am looking forward to more on your blog. (when you get time LOL)

At 7/30/2007 6:39 PM, Anonymous Anonymous said...

I am a professional that has been working with Autistic children for 10 years and I have heard wonderful things about the Amazing Kids Club however there is no information found online about it. Can you provide me with any contact information or a location for the club. Thanks so much.

At 2/01/2010 10:44 AM, Anonymous Anonymous said...

im an amazing kid

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