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.

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.

Update

Hey all,

Sorry for the infrequent updates.

Brad is doing well. Progress continues to be slow but steady. It's like we had a language explosion from age two through 2.5 years, but from 2.5 through 4.5, it's been really slow language-wise. Just trying to be completely honest.

That having been said, and without further ado: we had our IEP meeting last week, and it's official: Brad's going to kindie next year. Full on mainstream, only he will be in a class with an aid. Not his private aid, but a teacher's aid. Accommodations include wait time and prompting and the like.

And private speech therapy continues to hum along. Same type of inference/"how do we solve the problem" drills.

On the social/friendship front, not a whole lot going on there. But he had a blind date - a playdate where the mom didn't know Brad has a dx - and it went okay. That was just two days ago. I might try to fix him up again. The suitor is the little brother of one of Jeremy's friends, and he's age-matched and in the same school district. I think he's a good catch.

So that's what we're up to. Hope everyone in the blogosphere is doing well. I will try to post a video soon.

One Person Book Club Revived

Once upon a time, I was new to the world of autism. I was very calm and deliberate back then. (Not.) Anyway, I charted my reading adventures under the tag One Person Book Club.

Here, I will list some of the other books I have read, but don't particularly recommend, along with a relatively new title I recommend highly.

First, the books I've kicked over the past few years that I can't recommend without qualification:

Quirky Kids - A decent basic reference for parents, but for me, normatively, it was too focused on remediation.

Smart Moves, The Dominance Factor, Brain Gym - These are OT-themed books. The skeptic in me can't recommend them without qualification - not evidence based enough. ("It worked for Johnny! That's all we know.") But they are interesting, and if lateralization and the mind/body connection are areas of interest for you, you might enjoy these books.

And now for a book just published in May of this year that's a must-read for parents, particularly if your child is hyperlexic: Autism and Talent. Where so much of the research and so many of the parent resources are focused on deficits and remediation, this book focuses on talent, and in doing so, sheds light on the nature of autism itself.

The introduction is available for free online here. The book includes contributions from Simon Baron-Cohen and his research team, Temple Grandin, Laurent Mottron et al, whose research team includes netizen Michelle Dawson, and Allan Snyder (whose research the Eide Neurolearning Blog discussed here).

And to be clear, I recommend this book both from an intellectual perspective (interesting read!) and from a personal, parenting perspective. This book gave me a glimpse under the hood, and I'm not referring to talent (because to do so with a 4 year old is a little silly). I'm referring to the bias to local processing and the differences in sensory discrimination and processing. The entire book is evidence-based theorizing by some of the world's most respected researchers, but it's written in non-technical speak, so the every-mom or every-dad can understand. It also includes information (and, I think, messages) specifically directed towards us parents, as to how to develop talents. (Hint: regarding talent as maladaptive is not encouraging to the subject!)