Newsday article on autism

This link was sent to me by another mom whose daughter has autism. You may have seen it already, but if not, here's the link:

New Understanding of Autism

I read the article, and I intend to read it again. While it's confirming what I've suspected for a while now, that there's a genetic component to autism, it's a bit disturbing that the 'blame' seems to be shifting to mothers. The article mentions how mutated genes get transferred by moms. Great, thanks. Because I don't beat myself up enough every time my son does something like throwing a video game across the room (which he just did two seconds ago) because he's frustrated instead of asking for help.

I'm sure that the researchers and the writer aren't really attacking mothers, and the more answers are uncovered, the better. I'll work on not taking articles like this personally, but at the moment, it's not making me feel too good.

A trip to the zoo

We took the kids to the zoo today and Gus did surprisingly well, even compared to our last trip there a few months ago. Last time we were there for his school trip, he had some trouble waiting for the group to assemble and for lines to move, etc. There was about the same level of crowdedness. Today he didn't try too hard to run off, he didn't have a single meltdown in the zoo, and we were even able to go in some of the houses: the monkey house and the nocturnal animal house. We also stood in line to wait for a carousel ride, which was a major feat. He still wanted to race through each exhibit, but when asked to wait for his sister to catch up, he did. I could see him starting to lose his self-possession after about three hours, but that's a pretty big stretch of time, all things considered. He sat for lunch and a story hour (which was really awesome) as well. They had a great time.

A couple of things that I did to try and make sure we didn't have a disaster - I made sure to pack plenty of snacks - grapes, watermelon, apples and some animal crackers that are very low in sugar (three grams). The kids only had water to drink - no juice. I think those things made a big difference for us.

The Study - an update

Five full days after we've started our little private study, we've seen an interesting occurrence, and have also had our first heated discussion on how to interpret what we're finding.

First, the good news: I've noticed a definite reduction in hyperactivity over the past five days, even on the days that Gus didn't really go out and burn off any energy. He hasn't been lethargic, and there have been brief, minor spurts of bounciness. Then yesterday, we gave him one of those fruit bars (like a Nutrigrain Bar, but with unprocessed sugar) that had about fifteen grams of sugar and just before that he had two oatmeal cookies with about nine grams of sugar. We were at the beach and the kids have gotten into the habit of having cookies for their snacks when we're there (not provided by me, by the way). About two hours later, he was zooming through the house like the Concorde, and that lasted for at least an hour.

I took this as a pretty clear indication that the large amount of sugar revved him up to that manic state, but my husband seems to think that it's inconclusive and we'd need to give him a big dose of sugar again to see if we get the same results. I can see the logic in that, but I don't think that getting Gus excessively worked up, just to see what will happen, is an acceptable idea. Hubby thinks that an hour of manic behavior (which by the way can also be dangerous for Gus - he often runs and slams himself into the wooden or glass doors, or starts jumping and climbing on chairs) isn't the end of the world. Maybe not, at least until he breaks the glass or goes sprawling on his face and ends up in the emergency room.

so, we continue to observe. I've got to find some snacks to take with us later this week for our visit to the water park, because I know it will be a challenge to keep him from all the crap that will be available. Wish me luck.

New Yorker article

There's a great article in the August 20th New Yorker written by Tim Page entitled Parallel Play. Tim Page is a music and culture critic and has Asperger's Syndrome. He shares his experiences growing up with Asperger's. It's pretty fascinating and I highly recommend it.

School, TEAACH and ABA

I just received the packet from Gus's school for September. apparently he's getting a new teacher. I can't help but to feel slightly disappointed - his teacher last year was amazing. I'm sure it will be fine, but ever since his first school experience, which was an awful one, I'm always nervous about changes. Yes, I need to get over it - most kids get a new teacher each year. All I can say is I'm working on it.

When Gus started Early Intervention at two and a half, he got into one of the most sought after programs in our county at the time. They used the TEAACH (Training and Education of Autistic and Related Communication Handicapped Children) method, which I found to be preferable to ABA. (Applied Behavioral Analysis.) I was dead set against ABA because of awful stories I'd heard about it: children being physically forced to sit in chairs, children being tormented with the very substances that they had aversions to...the stories made my skin crawl. So I tried the TEAACH school; they were supposed to have loads of experience in dealing my son's particular needs, especially since he was very high functioning.

It was a miserable eight months. The method was not the problem, but the school was. The teacher (in her first job, first year) could not manage the different issues and needs of her class of ten. So they got the teacher some support. Since she was having such trouble just getting through the day, communication was often sacrificed, so I often didn't know what was going on during the day unless Gus had trouble, then I would get a note. There were enough notes for me to become concerned, and I started popping into school (which was permitted by this particular school) unannounced, with my infant in tow. On many occasions, I would observe Gus through the window of the classroom door crying or having some kind of meltdown. He had no idea I was there, so they couldn't say that I was setting him off.

I can't tell you how many times the teacher, or later one particular administrator, would say things like, "I don't know what's wrong with him," or "Why is he doing this?" Are you kidding me? I would think, "You're supposed to be the experts!"

It upset me most because I could easily see what was making him tantrum. Gus can't handle other people, especially children who tend to be very high pitched, crying. There was a little boy in the class who made Gus look positively lethargic by comparison, and would often have his own tantrums. When the little boy started to lose it, Gus would lose it shortly afterwards. Another behavior that seemed to upset the school a great deal was that Gus tends to moan or hum when he eats. It's just something he does - who cares? Do I worry that some kid is going to harass him for it when he's older? Yes. But quite frankly, it's not something that keeps me up at night; there are much more important things for me to worry about - like the fact that Gus used to (and occasionally still does) wander off. Yeah, the school lost him one day. And the best part is, they didn't tell me until about a month later. He wasn't at the school much longer after I learned that little tidbit. He wandered into another classroom, and his teacher didn't even notice.

New teachers scare me. They don't know Gus, and sometimes that can be a danger. I won't worry too much right now because I'm fairly certain that at least one of his old aides will still be around and they know him well enough.

Incidentally, after the school from hell, Gus was given an at-home speech teacher from an ABA program. I only agreed to try her approach because I'd met her and liked her very much. She accomplished within a week what the school hadn't managed in months. Her first concern was the safety issue, so she worked with him on staying with us when we were outside and not running off. A second teacher was brought in also, and that summer we saw some lovely progress in Gus's staying with us, in his play skills and in his communication. They were incredibly supportive, and they loved him. And the ABA method was working - no horror stories here. We were even able to start working on potty training. By the end of the summer, we got Gus into the home-therapist's school and he spent two very happy years there.

Ironically, the TEAACH method is the basis for his current school program, and Gus does beautifully with it. He thrives when he's got a schedule and knows what's coming next, he focuses much better when he's got a small visual space to concern himself with (his 'office') and he gets just the amount of social interaction that he can manage. Last year he did performances onstage, and was able to go on three field trips - one of which I did not have to go on, and he didn't wander for a second (but I'll admit, I was a wreck during the one I didn't attend). I think one of the most important factors, more important than the method being used in a school or by a therapist, is the staff implementing that method. I think many of the different approaches have their benefits, but without a caring teacher who truly respects the individuality and specialness of the student, they can also be pointless. That goes for any kid, really, even the ones who aren't on the spectrum. I'm crossing my fingers that we get lucky again this year.

These things make me sad

My mom is visiting for a few days, and yesterday she invited a couple of her friends over for the day. One of her friends brought along her six-year-old granddaughter. She was a lovely little girl and got along well with MM; Gus entertained himself for the most part with his video games. After lunch we all went to the beach. As we were packing up to leave the beach, Gus got a little restless and started running back and forth. We had to redirect him several times.

Now, this is a perfectly normal routine for us. We just get everything packed up as quickly as possible and just try to keep him out of trouble or from getting all wet again - no big deal. MM and her new little friend were sitting quietly waiting for us to leave when the little girl asked, "What's wrong with him?" Insert big sigh here.

I know she's only six, and she certainly meant no harm. And six-year-olds aren't typically discreet, so of course Gus was standing two feet away just as she asked the question. I tried to explain in as simple terms as I could that Gus doesn't always understand what we're telling him to do or he doesn't always know when we're speaking to him if he's not paying attention or he can't always help not following directions although he tries to listen. Then she asked, "What's that called? Is it called something?" And I answered her honestly that he has autism. She let it drop and we all went on our merry way.

But it made me sad - not so much that a six-year-old asked such blunt questions, but more that I tend to project forward. Will kids still ask those blunt questions when Gus is ten or fourteen, except in a less benign manner? Will those questions be directed toward him and will he be hurt by them instead of oblivious to them as he is now?

The hardest part of his condition for me has always been the worry of how his peers will treat him when he gets older. I know what it's like to be teased, to be threatened, to be a social reject. That wasn't always the case for me, but I definitely had some very traumatic experiences at different periods of my life.

I know I can't shield him from the world and that even if he was 'typically developed,' there are no guarantees that he wouldn't have those types of experiences. Yet as his mother, it's natural to want to shield him, isn't it?

A Study of Our Own

After the nuttiness earlier this week, DH (dear-husband) and I decided to do some tracking of our own. Since we've agreed that sugar is never a good thing for Gus, we're removing it from his diet for a period of at least two weeks. But the only way to know if it's having any effect is to keep track of the results. We're looking at 5 specific characteristics: hyperactivity, responsiveness, verbalization, meltdowns and how he's sleeping; with each characteristic we'll keep a record of how they are effected on a 1-4 scale. By breaking the day into two hour chunks, we can also see if there are any specific times of the day when Gus is struggling or if there seem to be other factors effecting him besides diet (like being tired). Many of these things we already have a good sense of, but we want to look at them specifically as effected by the removal of sugar (or not effected if that's how it works out).

Once we have an idea of how the sugar removal with help/not help/not effect his behavior and coping ability, then we will be better informed to decide if we should pursue the next step, which would be removing dairy from his diet. But one thing at a time.

And I think I need to make something clear, mostly because I've been reading some other blogs and I have a tendency toward second-guessing myself. My reasoning for taking these steps has nothing to do with not accepting my son for who he is or being disappointed in the child we have. I adore both my kids for their strengths as well as for their flaws. But I know that the world is often a hard place for him to navigate, and if something like changing his diet can make it easier for him to function in the world, then I can't really justify (to myself) not taking those steps.
Hopefully, I'll figure out a way, in the next day or so, to easily post my spreadsheet in case anyone's interested.