My Kid is a Damn Nutter

[Clodfobble]

I keep starting to write an update, and then get bogged down in trying to explain all the backstory, and include all the details, and before long I run out of energy and just give up. So I'm going to try to just stick to bullet points and see how far I get.

--Both my kids have spring birthdays, which means their annual ARD meetings happen right about the same time. This is a legal proceeding where the school and I have to agree on their educational goals for the next year (since it's generally accepted that they won't be following the standard curriculum and/or need additional skills taught, all special ed students have an Individualized Education Plan, or IEP.) We have thus far managed to avoid having an adversarial relationship with the school, although that's rare and probably can't last forever, because their primary concern is to spend as little money on my kids as possible. We may have to escalate from passive-aggressive to plain-old-aggressive soon, as I want the after-school bus to take Minifobette to therapy rather than home, and they are thus far refusing. They have no legal standing for this and they know it (and it's only 7 miles, fer Chrissake,) but they are stalling, and I may be forced to put up the money for a legal advocate to prove to them I'm not backing down.

--Minifob's ARD is not complete but has so far been more amenable than his sister's. He is being fully mainstreamed with minimal support options being kept open, but no aide or resource pullouts anticipated. He's been inclusioning in the class of his future Kindergarten teacher since February, so she's very much in a position to know if he can hack it socially/academically while also not disrupting the class, and the answer is he definitely can. He came home the other day and showed me how his "big friends" taught him how to play Rock Paper Scissors. I'm so proud of my little monkey.

--We go to see our new gastroenterologist tomorrow, the one who's in the top of his field and has a very long waiting list. The bad news is, as a gastroenterologist who only sees autistic patients, he is under a huge amount of political scrutiny, thus it's pretty much a given that any child who walks through his doors is going to have to get scoped. He has to document beyond a shadow of a doubt that any child he treats does, in fact, have intestinal disease and damage. On the other hand, our overly detailed medical records get to contribute to the growing body of proof, so we get to feel good about that I guess. How much insurance is going to cover is debatable, but we figured if we were going to hit our out-of-pocket maximum, we might as well do it early in the year and get the second kid done for free. I'm really, really excited to see what our overwhelmingly comprehensive pre-appointment lab work shows. Some of the tests included things any other doctor would be far too terrified to test for... like measles antibody titers. If the titers are sky high (that is, enough to indicate not just basic-level immunity but rather current infection,) then he will do a series of biopsies during the scope to try to document the presence of live, vaccine-strain measles infecting the gut. In that case, we would not only get to add to the growing body of evidence, we could also be prescribed antiviral meds that could dramatically improve their symptoms (likely only Minifobette's, but you never know.) Of course all the other standard GI meds will be at our disposal too, including (hopefully) long-term antibiotics for Minifobette. We're not even going to discuss the current mucous situation with her; suffice to say it is horrifying.

--One of the fascinating things I witness on a daily basis is the difference between various autism sub-communities; not just biomedical vs. traditional, but things like Asperger's vs. "regular" autism. I find myself increasingly pissed-off by the Asperger's message board, because these are people who have convinced themselves that they have miniature Einsteins, and they are not at all interested in helping their children improve their very real deficits. Instead, every failing is cited as further evidence of their brilliance, and they send dozens of messages back and forth each day on topics like how to get it in their child's IEP that he doesn't have to turn in homework, ever, because he has a disability and it's not fair to make him do it. Or how to make the school pay for his private sports team membership, because it's critical to his social development, which is part of his disability and therefore the school's problem. People like this are the reason that there's not enough money to drive my daughter a couple extra miles to the desperately-needed therapy that I'm already paying for.

--On a similar note, the stupidest thing you can ever say to someone who tells you their child is autistic is, "Wow, congratulations!" Yes, I have actually been told this by well-meaning but idiotic people. Twice.