My Kid is a Damn Nutter

[Sundae]

Thanks for those Sky.
Also had great help from Clod via email.

Yesterday the SENDCO came and took my draft Social Story from me and as yet hasn't returned it.
Given that all I wanted to do was talk through it with her, this is not particularly helpful.
The good news is I thought about it and worked on it for a couple of days (on and off) so can rewrite it in an instant if I don't get it back before Tiger's Speech Therapist comes tomorrow.
I also have one I think is more relevant, and regardless of what the SENDCO says about the first one I will submit the new idea as a virgin product to the Speech Therapist. That way I get get her perspective from scratch.
I have a horrible feeling Mrs L will just dash in at the last minute with "corrections" which is not what I want at all.

[Sundae]

Guess what? Mrs L had in fact "corrected" my first draft.
And she had it to me by the generous time of 13.15. The Speech Therapist arrives at 13.30.
And she had split it into two separate issues, because she knew what I was trying to get at, but it was a bit jumbled.

The fact she split it into two issues - I will wear my coat outside, and I will share my toys and games - means she didn't see what I was trying to get at at all.
The coat statement was a descriptive sentence - Tiger loves his coat and associates it with the good things in life - mostly running and sometimes falling over. And being allowed to raise your voice.

The point was trying to get him to do some non-physical work with me before outside before he went on the obstacle course each day.

AND she used a completely different way of writing it out, using a single icon for every word, making it into a full page which looked like cave paintings. Which is NOT helpful as a preparation for going into a meeting with someone who has asked me to do it another way entirely.

So. Very cross.
Obviously the Social Story was jumbled to her, so it's nowhere near perfect. I wasn't expecting it to be. But I did not "submit" it for grading and certainly not to be rewritten, I asked to sit down and speak her her about it. Twice in 5 days. I have the benefit of working with Tiger daily - she made assumptions in her rewriting based on the statement made in July 2010. Not good practice.

I'm not saying she doesn't know her job.
I'm saying she doesn't listen.
And she doesn't work to a timeframe that is reasonable for other people.
I would far rather she had said, "I really don't have time this week. Can you speak to the ST at your appointment. I'll schedule a catch-up with you the week after, so if you have any more questions at that point I can help."

AND.....!
(not about Mrs L this time) the Speech Therapist didn't show up either!
No word to me, but then the Office was empty all afternoon - for all I know the ST could have been trying to call me.

Oh and finally - I was promised worksheets for the cub.
I was supposed to get them as usual last Thursday but the ST forgot. Fine, it was a mistake, of course it happens. But she said she would put them in the post. I asked at the Office every day - nothing. In the end the secretary suggested I ask Mrs L, as it may have been in with the info she gets from County, which comes in a sealed wallet through the internal post (because it deals with sensitive issues for some children).

Mrs L said not to worry, she could get me some photocopied from the regular visiting ST.
Again, got them today at 13.15.
One workbook, way below Tiger's current competancy.
No, I don't expect her to be psychic, but if she didn't know she should ask. I'm in the same place every single day until 13.00 at least, I'm easy to find. It didn't occur to me that there are many different levels of worksheets. Of course there are. But I'm learning on the job.

I'm happy to work as hard as I can.
I just don't deal with frustration very well. And today I felt like I was playing Blind Man's Buff. In Wellingtons and gardening gloves.

My GRRRRR is now over.

I've been working on prepositions using a whiteboard and pen.
He likes my drawings and the stories we make up about them. So it's all a part and parcel of teaching pronouns anyway, talking about the Fat Old King and the Skinny Witch or the noisy female cat and the quiet male dog.

All out of my system.
Tomorrow is another day.

And after all in that extra hour I got the see the Jelly Party which I would have missed otherwise.

[Clodfobble]

Originally Posted by Sundae Girl

using a single icon for every word, making it into a full page which looked like cave paintings.

I don't know your Tiger cub at all. But from what you've said, this sounds way below his functioning level... some kids need this kind of thing, no question. Minifobette still does. But not a verbal child who is inclusioned.

[Sundae]

Okay.

All my Grrrrrs were resolved and I left school yesterday feeling soothed and settled and most of all - positive.

I had a 30 minute session with Mrs L which went SO well.
I do wish we could have had it before I supposed to see the Speech Therapist (who did leave a message apparently, but it wasn't passed on. My teacher got the apology for that rather than me, but I'm happy to accept it) but due to circumstances it turned out okay.

The confusion was due to the fact Mrs L expects to see the issue in the first sentence.
This is not clear in the notes I was given or in the examples I've read, but it does explain why she thought the coat was the important point.

The icons were simply to introduce me to a program called Communication through Pictures (or somesuch).
It is highly adaptable and you can remove or change icons at will, meaning there might only be one per line, or the icon is larger than the text, or text larger than icon etc. It is based on the idea that children on the autism spectrum are visual learners and I can see it can be used in so many ways.

I came away from the session so much better informed - not just about what I was trying to do re social stories, but also about Tiger's behaviour. No, she doesn't know him, but I was ignoring the fact that she has far more knowledge of children with his type of condition than I have. The worksheets were unsuitable, but she fully supported the ideas I'd been using and came up with some wonderful suggestions.

I don't feel bad about venting here.
I needed one to one time with her, and once I had it things changed completely.

Thanks for letting me hijack a little.

[xoxoxoBruce]

Since you are new at this, like you said promoted from within rather than coming in unknown, she probably is underestimating you. She doesn't know how hard you've worked, seeking advice outside on your own time and all. You probably should be more aggressive on keeping her up to speed with what you're doing. You know, I may be wrong, but it almost sounds like she doesn't really care if there's good results for the kid, as long as you're putting in the time with him that's prescribed.

Oh, and don't doubt you're doing ok, 'cause you're doing great.

[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.

[Griff]

I'll be writing Annual Reviews all week for my kids. We actually got a one-to-one aide for next year for a kid last week but getting money out of the county/district is going to continue to be a hammer and tongs job.

Side note my Russian friend is going to attempt to build a fencing program for kids with autism for his new salle. Sounds like a big challenge.

[Clodfobble]

Originally Posted by Griff

We actually got a one-to-one aide for next year for a kid last week but getting money out of the county/district is going to continue to be a hammer and tongs job.

Your kids are lucky to have you fighting for their side. Our teacher is a truly excellent teacher who cares very much about the kids under her care, but she leaves all the fighting up to the parents. She's not necessarily on the school's side either, but she is painfully judicious in what she will and will not say in certain situations.

Your fencing friend will have a challenge in teaching the class, but the customer base is most definitely there. I bet his program is full within a couple weeks of announcing it. We're all used to paying thousands of dollars for therapy, so sports team fees are nothing by comparison, and we're desperate for social activities where our kids won't be totally mocked and singled out. A couple of different martial arts places around here have just realized that, and as each new program gets announced, the parents pounce on it.

[Griff]

It is very hard to hit the right note. If you over-sell a behavior issue to get an aide you're suddenly giving ammunition to the more restrictive environment types who haunt these meetings. The whole thing can be a tooth grinder.

[Clodfobble]

Why, oh why, can nothing ever be fucking easy?

The appointment with the GI doc went very well--he said Minifobette had some of the worst bloating even HE has ever seen, but nonetheless she is a "classic" case and Minifob is far more interesting from a clinical perspective--but regardless of the details, he can help them both. He made a point of confirming with me before we begin this process that what I want is for him to treat their digestive disease. Most kids show cognitive improvements alongside the digestive improvement, but some don't, and the only thing he promises is to correct the digestive disease. I said sure.

BUT THEN... I mentioned as part of their medical history that Mr. Clod's aunt has a rare genetic condition known as malignant hyperthermia. It's a muscular reaction to certain anesthetics, including an instant seizing of the heart. It is frequently fatal, but they brought his aunt back with the crash cart during whatever routine procedure she was having a couple of years ago. Anyway, we don't know if the kids actually have the gene for it, but after his aunt's event we were told to always mention that it's "in the family" anytime someone is having anesthesia.

We had of course mentioned it during Minifob's two previous procedures, and the anesthesiologist at that time just sort of took it in stride and never said anything more about it. I'm now being told that this was because he was at a major hospital--the best children's hospital in the state, supposedly--so they just took whatever precautions were necessary, no sweat. The kids' planned colonoscopy/endoscopy procedures are being done at an ambulatory surgery center, the staff of which is far less comfortable with the possible risk. Our doctor can't do our procedures at a full-scale hospital, because his schedule in Texas is literally to fly in Monday morning, spend all day in pre-op consults, all day Tuesday doing 8 kids' procedures back-to-back at the ambulatory center, all day Wednesday doing post-op followups, and fly out Wednesday night. We can't go to a different doctor because none of them will touch us.

So we have two options. One, fly both kids to New York and have their procedures done through his main office there, where he has more flexibility with scheduling and location. Or two, get Mr. Clod tested for malignant hyperthermia via a muscle biopsy. (Can't test the kids, because it's apparently only reliable past the age of 9 or so.) Assuming he tests negative (which is the statistical likelihood, despite it being a dominant gene,) then the ambulatory center will do the procedures on the kids. The problem with option two is that there are only 5 locations in the country that can even DO the muscle biopsy test, all in medical universities. And setting aside the cost of a plane ticket for him, and the fight to get the test covered by insurance, so far two of the five places have already said they couldn't do it for him any sooner than July.

We're continuing to look into our options. But seriously, God. I've done my time, I've worked plenty hard enough. It's someone else's turn now, yeah? (Actually, I'm thinking right about now is when I get cancer.)

[monster]

Originally Posted by Clodfobble

Why, oh why, can nothing ever be fucking easy?

Because you won't sit down and take no for an answer.

Fly the kids to New York, have a mini vacation first.

I'm sorry, although those words seem so useless in this situation

[footfootfoot]

Where in New York? like, the city? Skyscrapers and everything?

[Clodfobble]

A city called Far Rockaway, not sure where that is compared to the Empire State Building.

[jimhelm]

don't get cancer. win the lottery. [/goodvibes]

[footfootfoot]

Originally Posted by Clodfobble

A city called Far Rockaway, not sure where that is compared to the Empire State Building.

Far Rockaway? Seriously? That's more in the mid Atlantic than New York, but ok. It's practically at the end of the A train. Look to the lower right @~4:00 (Funny aside, the A train was where my late father wanted his ashes left so he could ride the subway forever. It's a very long train line)

http://www.mta.info/nyct/maps/submap.htm