Adventures in Christmas Programs

And audiologist exams, and vision screenings, and potty training, and....

Let's just say the boy's not been much in a cooperative mood lately.  He's been sick recently, which doesn't help matters, but he's been a royal uncooperative crank in the last month or so.

This is actually good news in some ways. I mean, it's a royal PITA in a lot of ways, but it's good news because he's no longer the passive, "good baby" that he used to be. He doesn't sit in the shopping cart or stroller and watch as the world goes by. He won't stare dully at you when you try to get him to make a choice.

He's decided he should be part of the world and interact with it, and express opinions. That opinion is usually "no." That's very typical for preschoolers. It's the first and easiest opinion to express.

But as I resign myself to caring for his Christmas program meltdown, and get frustrated that he won't wear headphones for a hearing screening or tell the nice clinician what's on the card on the room is full of all sorts of other things to see, I remind myself that this is a positive step. A frustrating and annoying step at times, but a positive step.

In other, somewhat related news, teaching to the test begins early. The preschool teacher and we agreed that we should start teaching him to point at specific objects when asked and to find the difference between a series of objects when asked. Why? Those are two skills commonly used in IQ tests. We're trying to give his baseline assessment for kindergarten as much of a boost as possible. We all agree that he belongs in a regular classroom, not in a resource room.

Chicago Tribune - Getting It Right

Alternative therapies are uncontrolled experiments. And uncontrolled experiments do nobody any good. 

It's a long article, but it's worth the read. Also see Science hijacked to support alternative therapies. 

IEPaloooza

So after having 10 people sit around in a circle to discuss one little four year old, we have an IEP for half a year. And the school district is threatening to force us to go to a different school if we want summer school. Because taking an autistic boy and putting him in a strange environment with new teachers for three weeks in the middle of the summer is productive. Yeah.

Anyway, they're thinking he's going to outgrow his AAC and need something more advanced soon. It's clearly appropriate for him. He navigates it like a pro. However, he's also created new problems by having a voice. Just as with spoken words, sometimes he's communicating wants and needs, and sometimes he's just making noises for internal reasons not relevant to the discussion.

The preschool directer thinks they pretty much have this one under control, and I tend to agree. Rather than saying something like, "No talker!" or "Talker down!" like the school district suggested, the teacher just says, "But we're not talking about X right now. Let's talk about Y." Just like any other kid babbling about something unrelated to the lesson. Sometimes when the lesson is over a skill he's already mastered, they just turn down the volume on his AAC and let him explore as much as he wants. This? This is why I am not taking him to a school district preschool.

Our next IEP will be for transitioning to kindergarten. I have to admit I'm concerned about this. I have faith in the school he'll be attending, but I can't control all the variables there either. What if he gets a horrible teacher? How much are they going to underestimate his abilities? How bad is it going to get next year when he's stuck in this new routine?

I'm glad he's doing so well with reading, because I feel like that's something that shows proof that he's educable. And it saddens me that he needs that. I feel like when it comes to special ed, some kids are taught, and some kids are warehoused.

Conventional Wisdom

Yeah, I'm a slacker. I learned more at the autism conference I recently attended than what testing goes on inside a DAN! office.

ABA is on the decline.  Several speakers with a background and education in ABA spoke of the shortcomings, including a certified and practicing behaviorist. Mainly that while it's effective in some cases, it's often pushed as a panacea and the only therapy anyone should use. One professor said that kids who had the sometimes recommended level of 40 hours a week of intensive ABA were simply overwhelmed by it.

I tend to agree. I have concerns about the true effectiveness of ABA beyond teaching a discrete behavior. Yet I, like many others, tend to hold it up as an example of an evidence based practice, because it's certainly better than admitting that there's very little evidence based practice in the education system, period. This would certainly be a better place to throw research money than disproving the vaccine-autism connection again.

The problem is that many states are starting to role out mandated autism coverage laws. What gets covered? ABA. Speech therapy, occupational therapy, and ABA. That means there are situations where a family would be told that they can get ABA or nothing. Let's hear it for teenagers that demand a reward for every action. Let's hear it for kids being taught that food is a reward. ABA in theory isn't that, but in practice it quite often is.

That said, we're in the process of hiring a behaviorist for potty training. Using the toilet seems like a behavior where rewards and positive supports would be effective. I really hope it works. He's going to kindergarten next year. And while it's not surprising that he's not potty trained, he's got enough social barriers as it is. He doesn't need a poopy diaper incident to follow him around his school career.

Another point:

The phrase "genetics loads the gun and environment pulls the trigger" is in some ways an invocation of Bettelheim. We didn't cause autism in our genetically predisposed children, though sometimes prenatal stress seems to make the difference. And that's an environment we already do our best to control.

Hamthrax Vax

So we got the kids their H1N1 vaccine. They didn't sprout extra limbs, get the flu, or develop strange neurological symptoms. I did notice my son had autism after the vax, though.  

You'd think preventing a potentially deadly illness with a treatment with low risks would be a no-brainer. But it is not. Thanks, mercury militia. The chance of having a severe allergic reaction to a vaccine is roughly the same as the chance of being struck by lightning in a given year. And yet, I had parents asking me if we noticed "any symptoms."  I saw someone else asking if it was normal to have a sore arm the next day or if it was a sign of a bad reaction.

One told me that she was foregoing vaccination, since she'd driven H1N1 away by giving her son some homeopathic remedy at a 30C dilution. For those not familiar with the dilution required - that dilution is so extreme there is no trace of the original solution. Yes, she knew it was nothing but water. She said it was an "energy" thing.  Well, I'll take knocking on wood and crossing my fingers. Just as effective, but a lot cheaper. And whenever someone in my family doesn't get sick, I'll credit my finger crossing, and when they do get sick, I'll claim I forgot to cross my fingers or didn't do it soon enough. 

Anyway, nuttiness.

Getting Inside a DAN! Head

So I went to a presentation from a DAN! doctor. I'm already a skeptic, I'll own that. And yes, I knew I was mainly there for the snark, but I'm also curious. What is the appeal?

Ok, so her background. She's a health administrator who went back to school to become a chiropractor with DAN!, "detoxification," and HBOT certifications. That's a lot of woo in a very concentrated package, but she's labeling it "integrative care." And there's not a single one of those things with any solid, evidence based science behind it, but all of those treatments do require regular, repeated visit$.

Anyway, as she was giving her presentation, she focused on tests. Tests are good. Tests sound very scientific, don't they? Turns out DAN!s love their tests. Actually, I'd gathered that from listening to other parents.

It was rather vague about why they chose particular testing. It sounded a lot like a shotgun approach - give them tons of tests and then treat anything that comes back abnormal.

On the surface that doesn't sound too bad, except for a couple of things. For one, she already questioned the test range. She seemed to think that the labs determined their normal ranges from people who submitted samples and were "mostly sick," so she seemed to think a result in a normal range wouldn't necessarily indicate a realistic normal range. I didn't get a chance to ask her how exactly she determined a normal range, since the labs apparently didn't do it. Does she guess? If so, why test?

Anyway, another problem is that when you take enough statistical samplings, you will eventually find something that isn't in the normal range. Because it's an average, and some people are going to normally and naturally fall at either end of the curve due to natural variation, lab errors, etc. That doesn't always indicate a problem. If someone isn't showing symptoms, chances are there isn't a problem. She seemed to think people wouldn't always exhibit symptoms when they came back with abnormal results, but they should still be treated. She also seemed to think some people would exhibit symptoms but have normal lab results. Those people should also be treated. So people should be treated whether or not they had symptoms and whether or not they had abnormal test results.

There were blood tests - too hight of cholesterol was a problem, as was too low. Normal results could also indicate a cholesterol problem. That seemed to be a theme. Even if the tests come back negative, you're still sick and need treatment.

Allergy tests - and beyond the blood IgE testing, (not as accurate as skin testing, but not as traumatic on the child) she liked to do IgG tests and claimed allergies could have a 72 hour reaction. Ok, first off - IgG is not in any way shape or form a valid allergy test. But now picture this. Your trusted practitioner gives you a laundry list of allergies and tells you that you could see "symptoms" up to 72 hours later. So for three days you're chasing shadows to find some vague symptom. Oh, a headache - must be an allergy. My kid must have had something he shouldn't have had. I've already got a taste of this with lactose intolerance, which does manifest itself the next day as a nasty diaper, but 72 hours later? Good golly, I'd never get any work done with the backtracking to figure out what he ate.

You somehow get past the impossible allergy and cholesterol testing? Well how about yeast. Yeah, we can find some yeast in your poop. We can find yeast in just about everyone's poop, because that's where it grows, but now you get the disgusting and OCD inducing joy of knowing just how much and what type if they can culture it.

I asked if yeast was always a problem or if she had a level at which she thought it should be treated. She gave a vague answer that some yeast would be ok in a normally functioning gut but that other people would need to have it entirely eliminated. In other words, if she deems your child to have a bad gut - and autism, according to her, involves "toxin and bacteria" in the gut - she's going to say you've got to get rid of all the yeast. Ever try to get rid of a standard, common yeast overgrowth in a young child's mouth? Let me tell ya, that stuff doesn't want to go away. Now I'm trying to picture getting rid of it entirely, and I'm thinking she's got a cash cow. If only cash cows were bulls, because we could... never mind.

Toxins, oh the toxins. She does indeedy chelate. My partner in crime asked her several questions about the safety of chelation, and she seemed to think that oral chelation was hunky dory in the hands of a qualified specialist like herself and that any safety/ethical concerns about clinical studies on chelation involved IV administration. The chemical involved is EDTA, which could be either IV or orally administered. If anyone in the know could tell me if the proposed studies involved oral or IV EDTA, I'd be much obliged.

Celiacs, celiacs, oh my.

One of the other things she finds is a lot of "non enteropathic celiac disease" My Google tells me that enteropathy is a disease of the intestines, and celiac disease is gluten sensitive enteropathy by definition. So a non enteropathic version would be an IgE reaction to wheat? Or possibly another case of "even if the test comes out negative, you're still sick."

IgA deficiency. This seemed to be the only thing she mentioned that when I Googled actually existed as a real problem. And, surprisingly enough, you can have it and be asymptomatic. Score one for the testing.

HBOT

Yes, HBOT therapy. It's the new secretin. She cited a study by BMC Pediatrics, and my thought was what's so special about HBOT? What's different that couldn't be done with a weighted vest and an O2 tank? My partner in crime asked her if there were any studies available in journals that weren't open access and then suggested several reputable journals where one might find medical research. She answered that the study met with the approval of some HBOT industry group. Isn't that a bit like Toys R Us approving a study that claims people should buy more toys?

Anyway, I'm sure I'll remember more at some other point in time. I've got some good thoughts from the conference to blog about, too.