Tuesday, October 03, 2006


Transition is coming! Our choices appear to be an autism classroom or regular classroom with support. And it only gets more interesting from there. The good news appears to be, though, that we won't be able to sell our house. Now that I've learned more about the district we were hoping to live in, I'll take our little rural one anyday.

Time and time again, I've heard great things about the other district - well-monied, good graduation rates, excellent programming - but not such great things about special education, including a number of conversations with a high school special ed teacher who wrings his hands over requests to retest juniors who want to go to college after graduation.

Most kids are identified as having a learning disability or even Asperger's in early elementary school. We know that they don't grow out of those disabilities, but we do know they can learn to compensate for them, so students should know where they stand when they are 15 or 16 or 17 versus where they stood at age 8. Why should the district pay? First, because they ethically should. If we are decent, reasonable people trying to teach kids in the best way, we should have a clear picture about the severity of a disability. Also legally, schools must faciliate the transition of their students into the adult world in whatever way that should happen. Second, legislation states that students can be tested at any point if it is requested by the school or by parents. Parents could ask for it yearly, if they wanted, and would be entitled to it under IDEA-2004 guidelines. Thirdly, it costs districts about $80. It costs many families between $300 and $1200. That's a big expense that's tied directly to education. Under IDEA families are entitled to a Free and Appropriate Education. If they need testing in order to plan for the best transition activities in their senior year, the district should do it. And so... I hear this guy and am frustrated. Then I meet with his recently graduated seniors who are incensed and it's not pretty (though I diligently hold my tongue).

The hand-wringing gets me most because it is stated without regard to who the kid is. Any conversation about transition leads him to this mournful discussion of the cost of testing, not whether or not it's good information or if it facilitates any changes in the kid's education, just the cost. Ridiculous....

Saturday, September 09, 2006

Sharing and Biting....

Bird is connecting more with us these days which results in both him being interested in his brother and sister and utterly irritated when they don't let him get his way. Bird doesn't call for my intervention ("Mom!!.....") in these cases, he just bites, hits, and kicks them. His older brother and sister are becoming a little wary of him. They really, really want to play with him, but they don't want to endure the pain that can come from these interactions. So here is poor big brother, playing a computer game this morning, when Bird walks over and tries to edge him off the chair. That won't work, especially because his brother weighs twenty pounds more, so Bird decides to scream and bite. His poor brother is now marked with a healthy bruise on his left upper arm. He's also a tiny bit timid of his baby brother. I turned off the computer so Bird would understand that biting was not going to get him what he wanted. His dad and I gently scolded him but then, after a few more minutes of crying, I sat down to comfort him.

Here's my rationale: On one hand, Bird's got to learn that biting won't be rewarded. He's four years old and therefore working at the same cognitive developmental stage as every other four year old. That means figuring out how to share and work with other kids to negotiate space. It's important that he understand that there are other ways to get what he wants. On the other hand, the little guy doesn't have any means of vocalizing these negotiations, of saying, "Hey, can I play for a little while?" He can't tell us that he's irritated or frustrated or if his sister won't share. All he's got to pull from is a physical response.

Underneath the anger of not getting his way, I am assuming a level of frustration that he can't figure out any other way to handle it. So I scold the physical aggression and comfort the frustration. But wouldn't it be great if he could say, "Mom! He won't let me use the computer!"

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!

Monday, July 31, 2006

Getting Back Online

I haven't blogged in a while for three reasons: First, we've been crazy busy, especially with the addition of swim lessons. Second, I've been avoiding the blog since sometimes I let myself get mired in the bog that is autism. Third, I've been mulling over a question from Amy Umble's article that I posted a while ago. She wrote, "Mostly, I want to know if she ever noticed the moment autism stopped being a tragedy and simply became a fact of life." How would I answer that question? Well, I think I've made some sort of peace with it. A truce anyway. I think I'm ok because he is so happy. This has been a great summer for him. He's even playing with his siblings, tolerating them trying to hold him and tickle him. He's allows his sister to lead him by the hand. And though his language has retreated to nearly nothing, he's really tapped in to the family as a whole. Remarkably. And so, I'm ok with it. I don't think it means I wouldn't change things if I could. If I knew that chelation or vitamins or standing on my head all day would cure him, I'd do it.

But now, we are off for the 2006 Autism Conference at the Penn Stater. We've got a hotel room with enough space for the five of us. The kids join the Children's Institute while us parents attend sessions. At the end of the day, there are social gatherings for families. It's a little voyeuristic, but I'd like to see the other kids as much as I'd like to meet other parents. Roughly 2400 people from around the nation and world attend, including Dr. Daniel Ayoub, who so kindly responded to my letter to the Schafer Report. Full scoop when we return next week.

Wednesday, June 28, 2006

NPR Interview

Click here for an NPR interview about autistic adults who are embracing their autism and about one man who didn't learn of his own Asperger's until his son was diagnosed. Pretty interesting thread....