Saturday, August 18, 2007

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.

Friday, August 17, 2007

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.

Thursday, August 16, 2007

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?

Wednesday, August 15, 2007

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.

Tuesday, August 14, 2007


My husband agreed to come with me today to the nutritionist in order to get the results and to ask some questions of his own. I was actually quite disappointed with her responses, with the report and with her attitude in general. So, I think that perhaps he was right to be skeptical this time.

My biggest problem with the report was that it told us virtually nothing specific to my son. There was maybe a paragraph listing the different sports that were considered 'active' but no other explanation of just what that meant. The other four pages of the report were an outline of the program we'd be expected to follow: three to six visits initially, then anywhere from twelve to thirty-six weeks following, depending on progress. There wasn't even any specific explanation of what the two supplements were that she was recommending; she just said that they were homeopathic - not even a name brand. This lack of information disturbed me.

I asked about the specific reasons for the dietary changes, and the reasoning behind removing dairy from Gus's diet was mostly for physical reasons - it produces more phlegm in the body. That has nothing to do with his Asperger's, though.

Then my husband got around to asking his questions. He asked about clinical trials, about where he could get more specific information on the technique. She got somewhat defensive and actually seemed annoyed that he wasn't all gung-ho over her methods. And, although she said that she was fine with our decision to wait until we get back Gus's blood work before putting him on any homeopathic remedy, she did become very cold and short. This bugged me as well.

I mean, really, if I was going to give my son medication from a doctor, I'd want to do some checking on it. It's perfectly reasonable for a parent to ask such questions, and now I'm glad that my husband stopped me from jumping in (although I expect that I would have hesitated once I saw the lack of info in the report anyway).

So at this point, my opinion of Nutrition Response Testing is not good; it may change if we find that she was right from the blood tests. But as for now, not something I'd recommend.

Well that didn't go as planned

My husband did some of his own research last night on Nutrition Response Testing and is dead set against it and most of the nutritionist's recommendations. He's okay with removing the sugar from Gus's diet. There's a small chance that he may decide to come and talk to her, but he's firmly convinced that it's a bogus practice and doesn't want Gus taking any supplements. He's also not quite convinced that we should take him off dairy.

So we compromised a little. We're going with the sugar removal for 2 weeks to see the effect, then we'll try out the dairy removal to also gauge any differences. As for the metals, we've agreed to wait until we get the blood work back from the geneticist to see if they show up and we'll proceed from there.

Last night's was one of the most heated discussions we've had since trying to decide where/when/if to move.

Monday, August 13, 2007

Whaddya Know

We went to see the nutritionist today at the Center for Natural Healing located in Kingston, NY. What a fascinating practice!

Marsha uses Nutrition Response testing, which upon further research seems to be (or at least closely related to) Applied Kinesiology. Now the latter has been criticized as 'quackery' ( see Quackwatch) and honestly, if I didn't have some level of experience with energy work, I'd probably agree. Yet, NRT seems to combine elements of acupuncture and homeopathy to perform muscle testing in order to pinpoint where the problem areas are and what nutritional supplements can counteract said problems.

More information on Nutrition Response Testing can be found here:

AcuNatural Family Healthcare

So what did we learn thus far? Well, I go back tomorrow for the full report, but
apparently, Gus does not have gluten problems. Big relief!! The recommendation is that we remove dairy from his diet as well as sugar. It will be a challenge, but nothing that will kill us. Quite frankly, I've always known that sugar is bad for him, in particular, but for people in general. (We were also given, as part of our packet, 124 Ways Sugar Ruins Your Health by Nancy Appleton, PhD.) In addition, it seems that Gus has mercury and lead in his system. So that will need to be addressed with a supplement called Metal Free. It's expensive, but if should last for several months and if it works, I can eat the buck-fifty. I'll just have to convince my husband.

But how could mercury and, especially, lead possibly be in his system? There could be contaminants present around us now, or there could have been some exposure as far back as when I was pregnant. I've got metal fillings, Gus had vaccinations, which probably had preservatives containing mercury. as for the lead, we've lived in 2 places that were built back in the thirties, so there could easily have been lead there, or who knows? there could even be some sort of lead contamination in our drinking water or in the canned food we eat. So if there's something that can get the metals out of his system, would I be remiss to not even try it and see if there's some improvement?

So far, I'm pretty optimistic about what I'm hearing, but time will tell. Despite the nay-saying, I've seen enough testimonials and heard enough first hand about this particular nutritionist, that I'm willing to give it a real try.

There could be something to this

I took the weekend off partly because I wanted to observe Gus for a couple of days on our Feingold diet. Saturday worked out quite well as the doctor had instructed me to keep both kids quiet over the weekend (Gus had swollen tonsils and MM was getting over an ear infection). So we all went to Hannaford's to check out their natural foods section. I was very impressed - no only do they have an entire section of the store dedicated to organic foods, but there are other things scattered throughout the store as well. Their prices are excellent, too.

So this weekend a good 95% of what we've eaten has been unprocessed, additive and preservative free.

Any effect on Gus? That's hard to say, as he does have the thing going on with his tonsils. However...

He hasn't complained about any discomfort whatsoever; whereas he typically spends afternoons running back and forth across the house or some other such form of bouncing off the walls, he's been extremely calm and quiet; we only had one meltdown all weekend - over his video game not saving so he was afraid he'd have to start from the beginning. Now, he has spent a good deal of time in front of either the game console or his computer, but that's not very different from what he typically does. The calmness we've seen gives me reason to think that this dietary change may just work out for him. I won't jump at shadows just yet, but hope is good, isn't it?

If you've had any similar experiences with dietary changes, please comment and share them with us!