My Autism Insights

As I promised the district, I went to visit the class they’ve been trying to convince me to transfer Gus to.  I had spoken to the teacher at length last week.  On the positive side, she is very knowledgeable, has a diverse background, and we see eye to eye on many important topics like mainstreaming and homework.  But we also have some core philosophical differences, which could become a problem like the use of candy as a reinforcer.

I spent a good hour in the in the class.  At the moment, the class is quite small.  Next year it is expected to more than double in size.  Class size was always a concern of mine since it would be bigger than what Gus is accustomed to.  The room is set up to be very open, which I think would be very distracting for Gus, but she has a primarily behavioral outlook (Applied Behavioral Analysis background) and believes that his behavior would just have to be modified.  I don’t know that it is a) possible or b) totally desirable to do that in all instances.  There would be less sensory support for Gus as well, and there would be no internet capability.  So the learning program he’s using now would be out the window.

Academically, this class focuses on much more basic skills than what Gus needs, and there is very little emphasis on Social Studies or Science - his two favorite subjects.  She does have a very interesting take on Math instruction, which I plan to do some looking into.  Overall, I doubt his academic needs would be met, and he’d be bored stiff.

As much as I like the teacher, despite our differing opinions, I can’t see Gus succeeding or being happy in that class.  I’m going to bring him in next week (he’ll be out of school anyway) just to see what he thinks of the room.  But I’m about 99% sure that I’ll be fighting for him to stay in his current school next year.  Either that, or I become a home-schooler.

Weeks like this, when everyone is feeling awful and communication is essential, make me truly appreciate just how far Gus has come over the last few years. He’s very verbal now with his main speech issue still being pragmatics. But there was a time that I remember quite well when he stopped developing language.

From around 12 to 18 months, he was acquiring words at a fast rate. Then around 18 months, he didn’t exactly regress, he just sort of stopped. And instead of starting to put those words together to communicate, he fell into a pattern of constant tantrums. The winter between 18 months and 2 was the worst we’ve ever had. I was pregnant and home bound with a child that I didn’t understand.

Fast forward five years and we have a child who can tell me exactly how he’s feeling.  Last night, he had a stomach ache, but didn’t feel like he was going to throw up.  This morning, his head was hurting a little bit, and his cough was “50% better.”

All his progress was a direct result of intensive education from the time he was 2 and a half.  Speech therapy, a brief time with PECS  and ABA for 2 years  all helped Gus to be the boy he is today.

I went to a baby shower today.  And as we sat around watching the new mom open all the little onesies and bibs and blankies, I remembered my own pregnancy with Gus.  In particular, I remembered a game I used to play with him while he was still in the womb - the tapping game. (The tapping game was when I would tap on my belly and he would kick back - very sensitive even in utero, I guess.)  At no time during my pregnancy did I ever imagine the path we’d end up on.

I never imagined the most awesome giggle I’d ever heard.

I never imagined how cute the word ‘tur-tle’ could sound coming from the mouth of a one year old.

I never imagined how a child so affectionate at home could be so isolated at day care.

I never imagined that a two year old would know the alphabet and would be counting.

I never imagined early intervention, ABA therapy, occupational therapy, special ed classes, medication trials, or IEP meetings.

I never imagined a seven year old who could make up Pokemon riddles that are actually funny. (What does a Pokemon say when he has a cold?  Pik-achoooo!  C’mon, that’s pretty good!)

I never imagined what an awesome and fun kid I’d be blessed with.

At the shower, we were asked to give the new parents advice or words of wisdom, and I just thought of something I should have added because there seems to be so many people who worry these days about autism:

You never know what cards you’re going to be dealt, so there’s no point in worrying, but also no point in bemoaning a hand that seems less than optimal when it’s dealt.  The cards will fall where they will, and all you can do is play it to the best of your ability.  Even a difficult hand can be a winner.

image from the Asperger’s Express

I couldn’t make a post yesterday because, honestly, I was just too disturbed by what I’d been reading in the morning. I needed to take a step away from autism in the news.

Maddy at Whitterer on Autism posted about state agencies in the UK removing children from families, not to provide them better, safer services, but cheaper services. LeftBrainRightBrain discusses as well. And it’s not just in the UK! Remember Nate Tseglin?

Then there was the New York Times article about the increase in restraint usage for autistic students that Kristina Chew talked about. The comments were particularly enlightening and saddening to me.

Take these two trends and you’ve got the makings of almost all my worst nightmares. And people wonder why I am so insanely overprotective of my children. How can I not be when I know that one of the safer places I can send Gus to might really be the most threatening?

And one more link to The Asperger’s Express about ABA (can be useful in tandem with other therapies) with a little blurb about restraint usage at the bottom. Reading this article reminded me of the reasons I had rejected ABA at first, until I found someone who used the theory in a way that wasn’t overly dependent on discrete trials or heavyhanded.

This is not exactly a brand new report, but Harvard researchers have some telling findings about the genetics of autism, as reported today in The Phoenixville News.  The most interesting part of this for me was a statement about why educational programs seem to have such good results for autistic students:

The findings also may help explain why intense education programs do help some aistic children — because certain genes that respond to experience weren’t missing, they were just stuck in the “off” position.

I’ve been thinking a lot about Gus’s progress and development over the years, and I’ve come to the conclusion that he was at his best when he was getting ABA (Applied Behavioral Analysis) services with a very competent ABA teacher.  He’s done all right with the TEACCH method, but the more emphasis that’s been placed on his academics, it seems the more he loses focus, which they then want to ‘fix’ with medication.  I think that if he still had ABA, even if only a couple of times a week, he’d be so much better off.   Both methods have their merits, but I think a combination would work the best FOR GUS.

As for the genetic findings, they’ve given me a good deal to think about.

“We have trouble getting through to these children, but with repeated stimulation we can do it,” he said. “These are circuits that have an ability not so much to recover but to work around the problem.”

I’m all for creative solutions!