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Sunday, October 26, 2008

The Changeling

School has made a dramatic difference for Ellie. I really can't explain the ways in which I see her true personality emerging. Cooperative. Sensitive. Funny. She seems to want to exert control over parts of her life, and then she's content to let me still run the show in many respects. Her functional communication is enormously improved. She has mastered "yes" and "no" and is internalizing many of the social skills that ASD struggle with. She is an expert describer, categorizer, organizer of things into groups and subgroups. I believe she is math oriented; I think that skill comes easily to her. She doesn't like to try things unless she believes she'll be successful. I wonder who she reminds me of?

Monday, October 20, 2008

Jenny McCarthy, or, You Knew This Was Coming

"We believe what helped Evan recover was starting a gluten-free, casein-free diet, vitamin supplementation, detox of metals, and anti-fungals for yeast overgrowth that plagued his intestines. Once Evan's neurological function was recovered through these medical treatments, speech therapy and applied behavior analysis helped him quickly learn the skills he could not learn while he was frozen in autism. After we implemented these therapies for one year, the state re-evaluated Evan for further services. They spent five minutes with Evan and said, "What happened? We've never seen a recovery like this."

from http://www.cnn.com/2008/US/04/02/mccarthy.autsimtreatment/index.html

1. The last time I checked, the gastrointestinal system and the neurological system were not the same thing. I mean, I'll ask Dr. Horn, who lives around the corner and is a real, live, breathing neurologist, but I'm pretty sure.

2. If this child had several food issues, and lots of kids do, then sure, starting a diet that would assist with his ability to properly digest food would be appropriate. But not every kid on the spectrum has this. Ellie doesn't. The kids in her class don't.

3. Here's the problem: lots of parents start a crazy diet and simultaneously start behavior therapy and speech services and whatever else they deem appropriate. So the child begins to improve. Well, is it the diet? Or the services? Without a control, who knows? McCarthy says she did one before the other. I can't believe any parent who knew behavior services were needed would wait out a diet before starting with professionals. Who says, well, little Snowflake here needs speech, play therapy and OT, but I'm just going to go with this diet first? Please. Basic research rules tell us, no control, no way to know, no data.

"We believe autism is an environmental illness. Vaccines are not the only environmental trigger, but we do think they play a major role."

4. FAIL.

5. People are thanking God and Sabins & Salk for eliminating polio. Childhood disease kills children. KIDS CAN DIE FROM THE MEASLES. Vaccines do not cause autism. Science says so, and I go with science over Jenny any day. This is how the kid's brain is, how it was hardwired. That's difficult to accept, but it's better than playing the blame game. On everyone.

I'm glad Jenny's son has improved. I wish his mother weren't a wackjob. She should be talking about the benefits of early treatment, intensive therapy, and supportive parenting, not pointing her finger at the medical profession, who I truly believe want to do everything they can to work with this problem. I know the doctors we know do.

Get your kid vaccinated. You will save his life. He will thank you.

Saturday, October 18, 2008

Rocking the Pixie, or, Miss Hepburn, We're Ready for You



Ellie is a hair twirler. It might be just a thing she does, like kids who suck their thumb. The problem is that her hair gets matty and a little wonky looking. So we rock the pixie. Sal cuts it, of course. Here's the thing with kids with ASDs--sometimes haircuts are a no-go. Let's not even get into haircuts in a salon with people chattering and hairblowers going. So what we do is go at the end of day, with no one else getting serviced, after nap. That seems to nip the anxiety nonsense in the bud. Now lest you think I'm just a no-frills hair kind of gal, if the girls would let me do their hair, I'd do it. I am all about the hair dodad. But they won't, so it's short hair for them.


What Barack says about ASD's

http://www.autism-society.org/site/DocServer/ASA_-_Obama_letter.pdf?docID=9642

Monday, October 6, 2008

Business card idea

I've seen a lot of signs, bumper stickers, etc. for kids on the spectrum and some are cute and some are obnoxious. I want to get one for Ellie that says, "I don't do small talk," because I think that's age-appropriate and cute. There are some that are so in your face, that I wouldn't let her wear them. And I'm coming from a place where Ellie has both a CASH t-shirt and a Ramones t-shirt. So I'm pretty loose about some things, but not others.

I also think I may get a business card made up in case Ellie just loses it in public and somebody feels the need to say something, or get that "look," the one that says, you need to control that damn child. I was thinking of something like this:

Thanks so much for being interested enough in my child to watch her behavior so closely, or perhaps feel the need to remark to me about it. I know you probably think she's a willful, disobedient child--but nothing could be farther from the truth! She has an autistic spectrum disorder (ASD) and when her brain gets too much input, too much stimulation, she struggles with being able to process it all. And because her disorder includes a speech delay, she can't always put into words what she's experiencing, or what help I can be to alleviate her discomfort. Thanks so much for your concern, but I assure you, we've got it under control. If you have more questions about ASDs, feel free to check out www.autismspeaks.com.

Yes, I think that's a good idea.