Yesterday was a super busy for us. We had a follow up appointment with the wizard. It was completely different because this time he was concerned and listened- about Little Bug's bowel movements, sleep patterns, and eating restrictions.
He wants us to consider completely changing Little Bug's sleep routine- the waking up in the middle of the night has started again- in order to encourage a new sleep pattern. If this doesn't work, he wants us to "reset" Little Bug's sleep patterns by giving him Benadryl. At this point, we aren't sure how we feel about this. When it comes to eating and bowel movements, he would like us to consider the GFCF diet. Nick and I aren't sure about this one. We look at what Little Bug eats and it is only G&C. We will have to consider this.
In other news, Little Bug is still over all 7 months behind or 2 years developmentally. For language, he is border line for what a 2 year old should be able to do or -1.6 deviations with a test score of 75 when the normal range is 85 to 115. This puts him at a scary place with the school. The doctor states that he may end up losing the option for services for speech with the school district due to being so close to the line, however he is hopeful that because he is ASD, he will stay covered. When discussing this with his Therapist A and FRC, they weren’t concerned as the bar for what a two year old should do is much lower than what a three year old should do. They both stated that we may find out that he will go right be into the moderate to severe delay range once the clock hits 3 years. One additional note the doctor had was that due to his overall delay, he wouldn’t recommend potty training for a year to a year and a half. As expected, he maintains his ASD diagnosis.
We also had our first meeting with the school. This is going to be difficult. The director was very defensive and willing to lash out. He explained that Little Bug should go to the school closest to him with an appropriate program. There are two options- a regular special ed classroom that meets 2 times a week for 2.5 hours or an ASD classroom that meets 5 times a week for 4.5 hours. I asked if we would be able to visit them so that we could make an educated decision. The reply was that they treat all classrooms the same and that it isn't appropriate to shop for a class for him. I stated that as the legal expectation for us as IEP team members is to make decisions regarding his placement, it isn't logical of the school to expect us to make a placement decision without knowledge about how the school's work. He was very willing to argue and quite honestly, it was hard not to take the bait. He was very dismissive in the way he spoke and often used air quotes when describing disabilities and symptoms and the extended school year process. He often made comments like- someone has read a lot of books.
I am hoping that this was a bad day for him and that this isn’t normal. However, we will prepare for this to be normal and to advocate for an appropriate placement in the least restrictive environment while having a behavior intervention plan ready. (I know, I do read a lot of books.)
1 comment:
It seems this director probably has a practice of trying to dominate every IEP process from the word 'go'. Since this probably more often than not works, he figures he saves a lot of work in the long run that way.
At this stage, it's all bravado and BS anyway. These things are almost constructed to be defensive though, since being found out of compliance with federal law down the road brings bad things on the school district. Our county has a whole compliance office just to keep the county from getting sued.
You'll be at this for months yet, and when he realizes you're not going anywhere or yielding to his crap, he'll either get completely irrational - which will work to your advantage - or blow himself out like a bad storm.
There's a book called The Late Talker: What to Do If Your Child Isn't Talking Yet by Marilyn Agin (plus some other people). It has scads of information about negotiating speech stuff in IEPs. I'd go read it. Your library may have a copy.
They're right about the two vs. three-year-old thing. Just being able to say words is one thing; being able to use them appropriately in conversation is a whole other issue. There's a kid in our son's class who knows all sorts of words, but he's all about scripting and echolalia, which means it would be extremely hard for him to communicate in a regular classroom. And because of that - say it with me - "it adversely impacts his education" etc. etc. Commit that concept to memory.
Our son was so far behind (we were in the most bottom category - around 50 - where they just about run out of standard deviations) that he almost didn't qualify for speech because they thought he had too little speech to merit direct therapy. We negotiated our way out of that, though. I think it'll work out for you all, just read the books and do the homework.
Once we decided we were there to get what was appropriate for our son (admittedly I often thought of it as "I'm here to win") and not make social plans or try to get on their Christmas card list, it got easier.
"someone has read a lot of books" = "you're going to be a pain in my ass, aren't you?" Read and speak the language and show you know exactly what you should be getting. It's one of the best ways to show that you're not screwing around and he shouldn't either.
The only rules are the ones dictated by federal law. Everything beyond that is negotiable.
Hang in there and keep kicking butt.
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