Monday, June 11, 2007

This 'n' That

The good news is that it seems like I am at least vaguely healthier . . . I even had low blood pressure when Thane decided to throw himself down while he was standing on top of the exam table as the nurse was inflating the BP cuff on my arm. I upset him by suggesting he shouldn’t unroll the entire spool of paper that goes across the table. He’s done it before without everyone getting angry with us, but the incredible waste of paper is a little bit more than my obsessive-compulsive personality can handle!

I made it up to him when I was done by helping him write letters on the paper with crayons. He was very cute trying to sign the letters too, and wanting both upper- and lowercase.

The doctor was again impressed with Thane’s progress – I think she is still surprised to hear him speak at all. She walked in and he announced “Now that’s a doctor!” He was being pretty loud, but I commented that at least this time he was being cheerful and loud instead of screaming in total terror at the idea of someone looking in his throat.

We went to the playground for a short visit afterward. Braeden and Thane played for a half hour but then Braeden said he wanted to leave because he was finding the other children there obnoxious. I suppose I may be odd, but I was happy to hear that as I noticed poor behavior right off. They were there for the Y-Care (“Why Care?”) and the supervision is dismal.

I’ve been reading another mom in Maine’s blog . . . she doesn’t just write about the day-to-day stuff I post here, but a lot of information and thought-provoking discussion about autism. I have been reading about the controversy with Autism Speaks – between the founders Bob & Suzanne Wright and their daughter, Katie Wright. I found myself feeling as if making that video of Thane may not have been the best choice – at least not as a fundraiser for Autism Speaks. The vaccine hearings are fascinating too. Anyway, I highly recommend Adventures in Autism.


Kimberly said...

So what is the controversy?

I should mention that I have a time controlling Bryce with that crinkly roll of paper at the peds office. :) He LOVES the noise it makes.

Bec said...


The short version of the story is that Autism Speaks was started by Bob & Suzanne Wright -- Bob is the former head of NBC Universal. They started AS after their grandson Christian was diagnosed autistic . . . their daughter, Katie, Christian's mom, now feels was it was vaccine-induced. Katie is on the board of a couple of organizations that support biomedical treatment for autism (think Thane's diet plus supplements and sometimes chelation, which is to detox heavy metal loads).

Anyway, Katie did an interview with the author of Evidence of Harm in which she said she said something needed to be done now, not years and years of research before treating kids, especially when a lot of people are seeing results with biomed. She was clear that she was speaking as a mom, not for Autism Speaks, the organization her parents started.

For some odd reason, Autism Speaks issued a statement distancing themselves from Katie, even though she said she wasn't part of AS and was speaking for AS. Autism Speaks, IMO, is trying to balance what one might consider a moderate position, but since they absorbed some other groups, including NAAR (cough, gag -- my brother speaks for them), they are giving a lot more money to genetic research than environmental.

I have very mixed feelings about vaccines. I think they could easily be made safer, and I think doctors don't give adequate info . . . but I also think there is a genetic component. It's kind of like my diabetes. Obviously my body doesn't know what to do with sugar. Thane's can't cope with other things that might not hurt another child.

I personally would like to see greater acceptance in the medical community for diet changes because it has made such a big difference for Thane. Even if it only helps one kid in 10 that have his diagnosis, it seems worth trying.

I don't understand some of the issues surrounding gluten specifically. If there are studies showing a link between gluten intolerance and dementia, and there is a condition called gluten ataxia where those with intolerance can respond by being clumsy and such, then why is it so far-fetched to think it might help some kids on the autism spectrum? Thane's apraxia, motor planning, is so distinctly improved by removing gluten . . . not 100% fixed, in my opinion, but in comparison to where he was and what happens if he gets glutaminated . . .

Anyway, that wasn't very short, was it? There is a good article on AS at Injecting Sense.