My Kid is a Damn Nutter

[Pico and ME]

Wow, I can relate to Tiger. I have absolutely no artistic imagination, but give me something to copy and Im not half bad. However, give me an organizational challenge and I'm a whiz - for instance, getting everything to fit in a suitcase or in cabinets when it doesn't look like there is enough space.

[monster]

fan-bloody-tastic

[classicman]

they accidentally rang up the real price of the Entocort prescription, then undid it and put in the insurance copay.
One month's supply of Entocort for one child? $.805.95. No shit.

The real cost... $.08595.

I'm dealing with the same thing.
Total "no insurance cost" was over $2000.00 a month.
Medicaid cost, now that I finally found a pharmacy that accepts it, $0.

[ZenGum]

This thread always makes me think of Lorenzo's Oil.

[Griff]

He should draw for Hyperbole and a half.

[Clodfobble]

Well, it's happened. We got our very first "he must not have ever had autism to begin with" implication, just like I knew we would. (The comment was from a distant acquantaince, sparked by the latest progress video I posted on YouTube, seen below.)

Of course I couldn't let it stand, and I politely asked how many other kids out there with NotAutism (TM) are going untreated because their parents have been relentlessly told that their kids' disease is definitively not treatable. About 85% of the parents I have personally convinced to try treatment have seen major improvements, and at that ratio it kind of comes around full circle and becomes "children with a diagnosis of autism" again, because what other descriptors do we have? Might as well re-diagnose the non-responders instead, it would be less paperwork.

I can't wait until it turns out my daughter never had autism either.

[classicman]

Wonderful. I love seeing this after following this thread for so long.

[Clodfobble]

There's been way too much going on, I keep starting these long posts and then abandoning them because I don't have enough time to properly explain everything that's been happening. But I wanted to throw this tidbit up here.

Studies on the GI problems of autistic kids have been coming fast and furious recently, a new one is published at least once a week and there are a total of maybe 200 by now, confirming or exploring various aspects of autistic GI pathology. Now, when discussing one of the recent GI studies done as a joint effort between Harvard and Columbia, the Chief Medical Officer of the US Autism & Asperger Association has made the ballsy step of saying:

This reaffirms the published findings in autism from more than a decade ago of such groundbreakers as Wakefield, D’Eufemia, and Horvath, all of whom the authors reference.

For a mainstream, high-profile MD to speak positively of He Who Must Not Be Named... believe me, this is huge.

[footfootfoot]

"...Yeah, I bet they can't get in the car after it goes..."

I was cracking up at this whole conversation, it sounds just like the kinds of chats I have with my kids.

Oh, and your kid is clearly a malingerer. nothing wrong with him at all.

[Clodfobble]

Nothing wrong that a good whipping wouldn't fix, anyway!


Actually, that's what has us in a major frenzy these last few months. It was time to wean off the steroids, and it did not go well. Minifobette got off them okay, but Minifob definitely still needs them, and at a relatively high dose, or he regresses severely. Except being on them forever is not an option, they will fuck your shit up.

So we are now working with the doctor on a different combination of meds, including a higher dose of the non-steroid anti-inflammatories, plus a very low dose of immune suppressors, which have had good results in people with severe autoimmune disease. On the one hand, these meds are serious business and I'm scared to death of them. But on the other, there are kids who get kidney transplants or whatever, and they take immune suppressors for the rest of their lives and somehow manage. As the doctor said, "These are drugs that are reserved for very serious conditions like cancer--but frankly, in my opinion this is worse than cancer." And I agree. It was pretty damn devastating to watch him fall apart again within just a couple weeks of going off the steroids. Fortunately his teacher has been very understanding, since she now has to deal with a very different kid than she started with. We've gained about half of the ground back, but right now he is as bad as he was a year ago in most respects. Stuttering and perseverating much, much worse than he was in that last video. Very difficult time focusing, major emotional upsets over imaginary problems.

I keep remembering how Lookout went through this same thing with his son and Abilify. I have the medicine right here in my cabinet that would make him all better, but I can't give it to him because it will eventually hurt him worse than he's hurting now.

[Sundae]

Sorry to hear about the setbacks Clod.
My thoughts are with you and the Fobs very much.

It's odd, rewatching G after all this time.
I know when you filmed this it was because of his extraordinary progress, but the Autism markers stand out so clearly to me now.

I've worked with Tiger for a whole year (wow!) and still new people to school do not understand why he gets help and other more obvious (more worthy?) children do not. He loves order, and aside from calling out and needing immediate attention if he has something to impart, he is considered polite, well mannered and no trouble.

Mars on the other hand (my 7 year old) is large for his age, less responsive to interaction, more insistent and has a history of physical aggression. People give me a slightly pained grin when they realise I work with him too. I am about to start a highly structured programme of lessons with him. During time he was previously allowed to run around and blow off steam (!!!) I knew it was coming and have prepared for the change by having Friendship Time, where we play games that involve turn taking or the potential for pushing and shoving (praise if it doesn't happen, discussion if it does). I have chosen the children and decided the games, to get him used to the fact I am in control. I've made them fun, but imposed definite rules to ease him into it.

In fact I structured one the other week involving two Piggy games (Piggy in the Middle and Squeak Piggy Squeak) in honour of Mars's obsession with Angry Birds. He was allowed to choose two children himself for this knockabout fun. He walks out with the only two Muslim boys in the class

Of course it didn't matter - we're a C of E school - tolerant but determinedly Christian. The boys would not be at our school if their parents had an issue with Western values. Just gave me a wry smile.

I'm freewheeling with Tiger at the moment, so the planned structure with Mars will be a change in gear for me too. Think of me on Wednesday.

[ZenGum]

In fact I structured one the other week involving two Piggy games (Piggy in the Middle and Squeak Piggy Squeak) in honour of Mars's obsession with Angry Birds. He was allowed to choose two children himself for this knockabout fun. He walks out with the only two Muslim boys in the class

[Clodfobble]

Originally Posted by Sundae

I know when you filmed this it was because of his extraordinary progress, but the Autism markers stand out so clearly to me now.

Tell me about it. I can pick out the spectrum kid(s) in the room in under 30 seconds now. But there's no point in telling the parents. A couple years ago one woman excitedly told me that Minifob must not have autism after all, because her little boy did all those same things! Yeah.

[Ibby]

Is he old enough yet to "feel" the difference between when he's doing well, and when, say, you tried wean him off the steroids? That is to say, I would guess (correct me if I'm wrong of course) if an adult who was following the program they're on, and was seeing huge improvement, stopped the program, they would be able to tell the difference - be able to "feel" the improvement slipping away. But I would also hazard the guess that young-enough kids aren't "self-aware" (not the word I'm looking for, but I think you know what I mean) enough to "feel" it - but I don't think i know a single kid, to be honest, so I could be way off base.

[Sundae]

I haven't had a chance to work with H this week - have had a vomiting bug which means I was at death's door yesterday, nauseous this morning, but not allowed into school until Thursday :sob:

Anyway. I've taken on board the idea H might really be embarrassed by an adult singing (as he perceives) to him.
He isn't on the spectrum, he's a child without an official statement who needs extra help.
But that doesn't mean he has to go along with the school ethos.

Because I loved singing and was used to singing every day it was normal and natural to me.
There were probably children in my class who felt like H - it's one thing for a teacher to lead a class in singing, and to sing along yourself, but to have an adult singing AT you is just cringy.

THRASS is a phonics system we use all the way through school, not targeted for lower ability children. So he knows the songs, uses the mat and sings along every day to the songs. And I know he loves singing, from the Nativity.

I'll try speaking the songs first. They are useful.
Example (a few words changed for copyright purposes)

Let's do the cat, kitten, duck, school hand-jive
Cat is C
Kitten is K
Duck is CK
And school is C and H

There's another bit about Queen being Q
It's phonics.

Anyway.
Things to think about.