About this blog.

My son was diagnosed with PDD-NOS at 24 months. I created this blog to bring meaning to the often-confusing label. Sometimes I have answers. Other times, just more questions.

Friday, September 23, 2011

Back To School Video

Interview subject has the sillies.


And here is Jeremy's first day of school interview, with Brad and more sillies, lazing around the house in the morning.

What happens in Fight Club...

***Spoiler Alert: mild Fight Club spoilers below***

I have Fight Club on the mind. The movie. But for a non-obvious reason. I feel like Edward Norton in the beginning of the movie, when his character goes to support group meetings, for various medical conditions he doesn't have, including testicular cancer and gynecomastia. There's a great scene in the movie featuring a sweaty Meatloaf with man boobs seeking emotional support. That's the way I feel sometimes. Not like Meatloaf, but like Edward Norton bearing witness.

Over the last few years, I too have sampled parent support groups. Anyone else in the blogosphere do this? Even when you were in the I'm-not-sure-whats-up stage? I'm just sitting there thinking, am I Edward Norton in Fight Club, or am I like these other parents, just in denial? The answer is likely somewhere in between.

For starters, I've met with a few mothers of children who are severely autistic. These mothers are of such high character, I don't feel worthy of being mentioned with them in the same sentence. The challenges, from darting to self-injurious behaviors to almost no verbal communication. I feel like my life is richer just by having met these wonderful parents - heroes really - but I could not relate to their challenges.

Next, I went to a small informal talk for parents led by a social worker. It was broadly focused on dyspraxia, nonverbal learning disability (NVLD), aspergers, dyspraxia and central auditory processing disorder. The problem with this one is that it was just bullshit. Tremendously disappointing. It started with a youtube clip, which she couldn't get to work with her overhead. But rather than moving on, she held us captive for 15 minutes while she tried to get youtube to work. She couldn't wing it. Not confidence inspiring. I got up in the middle of the meeting and left, after she told her captive audience that children with asperger's "are atonal and don't process emotions." Check please!

Most recently, I went to an asperger's parents support group. Best fit yet. I really connected to the parents and their anecdotes and view points resonated with me. At one point, the person running the meeting quoted a story written by a child with asperger's (who is now an adult and an accomplished journalist):
Well, we went to Boston, Massachusetts through the town of Warrenville, Connecticut on Route 44A. It was very pretty and there was a church that reminded me of pictures of Russia from our book that is published by Time-Life. We arrived in Boston at 9:17. At 11 we went on a big tour of Boston on Gray Line 43, made by the Superior Bus Company like School Bus Six, which goes down Hunting Lodge Road where Maria lives and then on to Separatist Road and then to South Eagleville before it comes to our school. We saw lots of good things like the Boston Massacre site. The tour ended at 1:05. Before I knew it we were going home. We went through Warrenville again but it was too dark to see much. A few days later it was Easter. We got a cuckoo clock.
Wow. This is exactly how Brad talks. It's all about the time and idiosyncratic details.

But then...

She asks the entire group "who here has a child with anxiety issues." She nods knowingly when everyone raises their hand. "Yes," she says, "children with asperger's have anxiety." Well everyone's hand was raised but mine. Brad has no anxiety. None. And bam! I feel like Edward Norton. You don't really belong here.

So you see, the more things change, the more they stay the same.

Sunday, August 28, 2011

Back To School

Just a quick update, and apologies for slacking. I’ve taken a break from label gazing and am focusing on…living life. Which is a good thing!

At age 5 and a half, Brad is doing well.

On the speech front, he was recently evaluated and is testing in the average range for vocabulary, language organization, syntax, direction following, paragraph comprehension and question comprehension. All good! His deficits are in the domain of “narrative formulation skills.” Even there, he is okay when questions are structured, but when questions are open, he struggles. Also, not surprisingly, his speech is characterized as idiosyncratic. As for pragmatics, he excels at “topic initiation” but fails at “topic maintenance”. Love the SLP jargon. Big picture though, he is communicating, and it’s mostly in the average range. I’m so proud of his progress.

Now onto the fun stuff: he’s off to kindie in a few weeks. Can you believe it? He’ll be in the public school in a regular classroom, with an aide. Not a private aide – that I’m aware of anyway. He’ll get pull outs for speech and some sort of social group. I haven’t had the first meeting yet with the school, so I’m not really sure of the details at this point. I’m afraid for him, socially, but that’s my problem, not his. His special ed team says he’s ready.

As Bradley’s speech has improved, his personality has continued to emerge. He really is a joy to parent. Of course I’m biased but he really is very sweet, smiley and well behaved. He continues to be quirky, but that’s what makes him who he is. We appreciate his unique perspective.

Academically, he’s reading up a storm. I marvel at this ability, especially because he’s so far ahead of where his brother was at this age. However, his reading ability is way ahead of his comprehension – which is either good news or bad news, depending on how you look at it.

Anyway, sorry again for the slackage and best wishes to all.