Reminder

Last night was the Halloween-that-can't-be-called-Halloween party at the school. I hate it when fully secularized holidays get the PC treatment. Anyway, we saw the girl's old preschool classmate. He's severely affected. He's nonverbal and isn't using his communication device that well, either. He spent the entire time stimming and looking away from everyone. Princess tried to say hi, but he plainly didn't recognize her. Very frustrating for everyone involved.

Anyway, his parents told me they'd read Jenny's diet, and it was just doing wonders for him. Maybe there is a change, and I just can't see it, but Jenny was certainly not curing him.

Two words with purpose

Woo! The boy caught a conversation we were having with the girl and understood it. We wanted her to go take a bath. He said her name and then bath. Twice. He clearly understood what she was doing, and he managed to articulate the concept. Yay for communication!

No Fragile X

We had the boy tested to rule out Fragile X. They sent the sample to the wrong lab, so we thought we wouldn't get the results. I guess they caught their mistake after all. We got them anyway, and they're negative. So yay.

And in all that naval gazing that I suppose goes on when your son gets a diagnosis for something like autism, my mom and I have mentally diagnosed my brother with Aspergers. He has some quirky speech patterns. He had behavioral problems in school. He was diagnosed with ADHD, which is a classic misdiagnosis for kids on the spectrum. He's always had a love for machinery, mechanical objects, electronics, etc. Does he have it? Eh, it doesn't much matter. He's who he is, and he's able to live without supports. But it does explain a lot.

Autism conference

It was good. I'm glad I went.

Yesterday's keynote speaker has autism himself and wrote tons of books on the subject. He was an amazing presenter and really engaged the audience. I had to catch the bus, or I'd have bought Autism for Dummies and Beyond the Wall for him to autograph. I'll probably buy them from Amazon later, but I'm still digesting 1001 Great Ideas right now.

Today's speakers included a morning panel with the developmental pediatrician who was part of the team that diagnosed my son and two other professionals on the state autism task force. The lunch session was presented by someone who wrote a book on career paths for people with Aspergers. The career info is a little too early yet, and the diagnostic info a bit too late. And when they talked about HCBS waiver services for the state, it was a bit frustrating, since I know those services aren't funded this year. Lunch conversation was really engaging, and I wish we'd had more time to just talk.

The last speakers were two of the three board of director members of ASAN. They did a good job presenting, even though the whole conference was running late from lunch, and they had some very valid points, but they also ran into the problem of coming off as a little adversarial to parents when describing their anti-cure stance. They were in one breath saying "don't cure us," and in another saying, "we need appropriate treatment." And that's confusing for parents to hear, especially if they confuse the terms "treatment" and "cure."

It's also not evil to wish you could make autism go away for your child. It's a healthy parental wish that you could make your child's life easier, especially if you're watching them get bullied in school. But, as I've said before, it's just not realistic to think that will ever happen.

I think they were just trying to say that parents could spend a year teaching their child to tie their shoes, or they could buy velcro shoes and spend that year teaching them social skills, and we all have to pick our battles and set realistic goals. Most of us would probably agree on that. Unless we're Jenny McCarthy.

I, once again, had to run to go catch the bus, so I missed the closing statements, but I'm fairly sure nobody ended up pulling out a knife. ;-)

A few good points that they brought up in the last panel:

• By the time your kid reaches high school, they should be participating in IEP meetings, not just sitting in them. They need to learn how to self advocate.
• Colleges need social and executive skills classes, not just accommodations for academic issues like quiet rooms for tests.
• People need to think about adults with autism, not just children.
• Give alternate IQ tests that don't focus on verbal communication.
  

I wrote down the name for an IQ test, but I'm lazy and not sitting next to my notes. I'll have to transcribe it before I lose the ability to decipher my handwriting. I'd like to ask them about it at my son's IEP meeting, since IQ monitoring was one of his recommendations.

Magical thinking

I was reading this study, and it went a long way to explain the Jenny McCarthy branch of autism parenting. Basically the theory is that the more out of control your life is, the more likely you are to see patterns when none are there and believe irrational things.

Our brain doesn't like situations that leave us out of control, so we're more likely to jump to conclusions without evidence and engage in ineffective rituals to create order where none exists. When your child is diagnosed with an incurable condition, and this is the sort of thing you see? Oh yeah, you need some magic.

I remember seeing that video before Mr K got his diagnosis, and it scared the bejeezus out of me. I remember thinking how glad I was that all he had was a little speech delay. Um, oops. While there's a lot of truth in the emotions and the feelings those mothers have, I don't think it's the whole story. I still have hope that at the end of this parenting thing, I'll have an adult who manages to make his own way in the world.

At any rate, I've tried my best to substantiate any suggestions before I go off and try some crazy Jenny McCarthy "cure." It's not that I don't think she believes she cured him, it's just that there seems to be a simpler explanation to what he had in the first place.