School (torture chamber) and my kid

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First, a bit of background. Kayli is 7 yo in first grade (US). She's been diagnosed with ADHD but I don't know if she really is, or if so, that that's the full story. She fits most of the criteria for AS except the special interest. I've only seen her stim in groups of children. She has a tough time socially. She also strenuously resists learning the alphabet or writing, although she loves to be read to. She has had severe behavioral issues since preschool, but only in school. For me, or in the community she's fine.

She loves learning on her terms. For example, a few weeks ago she was talking to me about whale worms, something she'd heard about on Animal Planet. I had no idea what she was talking about, so we looked it up on the internet, then I read an article from Zoology to her. The article was college level. She listened to the whole thing and wanted to read other articles. She understands the gist of the scientific method and uses the word "hypothesis" correctly.

Now the problem. Yesterday I was called to school because Kayli was having a harder time than usual. She'd had a melt down because she'd taken her shoes off after recess and wouldn't put them back on. She'd even hissed at them (In her imaginary life she's a cat-human). I got them back on her after I poured out all the sand. It turns out she was coming down with a cold, but her behavior was fairly typical so they tell me. I stayed to observe for a while.

There are 22 kids. Sometimes there are aids, sometimes not. The kids spend a lot of time sitting on the floor in front of the teacher. The kids are generally within arms reach of each other. Kids being kids, I'm sure you can guess the jostling and noise level. Then there's the noisy air conditioner. The rest of the time they're working in small groups, once again with accompanying kid noise. I really didn't see all that much actual academic instruction, although this was a fairly well run classroom. There's a lot of sit down, get settled, listen while everyone is jostling, get up, go sit down, do a bit of work, go do something else. A lot of transitions involved here.

While all of this is going on, Kayli is off in the corner doing her own thing. The corner has books and comfy chairs and couches. She's not being disruptive particularly, but she's also not attending to what's going on with the teacher. This is typical of her. No amount of coaxing etc on my part would get her to the group. Any force would have caused a melt down which is unfair to the other kids. After recess I did the shoe battle with her again. I got her to put her shoes on, but it took a minor melt down to accomplish this. After lunch the air conditioning was off so she was more willing to sit near the group on my lap, but she had a near melt down when I asked her to do the [silly] activity the other kids were doing (making a book). No way, no how.

Now, the room is uncomfortably noisy and hectic for me, and Kayli is more sensitive to noise than I am. She's also very particular about who touches her and how. She doesn't like kids close to her, especially boys. I wanted the heck out of there. I know she really wanted out of there.

It's apparent to me that it would take massive behavioral intervention to get her to even join a group--and for what? Not much. She is probably dyslexic and possibly dysgraphic on top of the behavioral issues. She only has behavioral issues like this in group situations. There is no way she's going to learn in a group environment.

She has been evaluated by a diagnostician, twice actually. She will not cooperate with assessments so it seems inconclusive, although she does qualify for services due to the ADHD which I'm not convinced she has. So, so far she might get a pull out for an hour once a week. Smaller classes -- not available. One on one--not available. Classes for kids with AS -- not available.

I'm just discouraged. I don't see that that's going to be anywhere near enough. I feel like I'm consigning her to a torture chamber every day for no good reason. I have no idea what the heck she's supposed to learn there, other than how to take torture.

If its possible I think home schooling would be best.

Your right in that school is a torture chamber regardless of age and even school programs designed for people with AS are at best only a bit less torturous.

I think you're right. Homeschool would be best for her. However, I am currently in a situation where my SO, who is not her bio father, is unsupportive of this idea. I'd have to stay at home, while he supports the two of us. It doesn't look like he's particularly willing to do that. As it is, I've provided all of her clothes, testing, and all that. I am currently out of work, so this is profoundly uncomfortable to say the least. I'm looking at ways to deal with it in future, possibly moving closer to her bio father so he can homeschool while kicking in cash to help him out. Or something. In the short run I need to deal with the situation as it is.

On the plus side, if you can call it that, no one is punishing her or ridiculing her--at least among the adults. The adults in her school actually like her even when she frustrates them. It may be that for the time being kicking around in the back of the class doing her own thing is the best way for her to be schoolwise. Her real learning is done at home any way.

Be thankful the adults are supportive. I have just began to homeschool my 7 yo 2nd grader with AS. While we were in the process of getting a diagnosis, he was suspended for 7 days after kicking the principal while having a meltdown. They took nothing into consideration. They just kept him away from the rest of the class in a corner. After finding this out, I was very upset. They said his physical stims and under his breath humming distrupted class. Even with a diagnosis they behaved as though he wasn't welcome, that the only reason he was was b/c it was public school. Now, he is doing so much better and his behavioral issues are getting easier to manage. I wish you the best with your daughter.

Believe me, I'm thankful. Last year she hit the vice-principal in the middle of a melt down. Luckily VP really likes Kayli and knew she'd blown a limit. Note to people dealing with Kayli: don't touch her when she's in the middle of an overload breakdown.

My son often hisses when he feels like people are violating his personal space. He also sometimes identifies with cats, and he's 14 - so don't expect this to go away! LOL!

Not knowing where you live, it's difficult to give you any specific advice in dealing with the school - laws vary, country to country. It would be a good idea to familiarize yourself with the legal obligations of your local school system, so you know whether "not available" is a legal response or not. Schools often tell parents that something isn't available, even if the school is obligated to provide it. Don't rely on the school to tell you what your child is entitled to.

It sounds like your daughter might well be mis-diagnosed. Her behavior sounds like she is dealing with a lot of sensory integration issues (typical for people on the spectrum), and her classroom is overloading her - badly. When my grandson (now 7 y.o.) was in kindergarten, he needed noise reducing headphones to deal with things like noisy assemblies, flushing toilets, the air conditioner clicking on in the building ... Maybe your daughter would be helped by noise reducing/cancellation headphones? or earplugs? - if she can stand the feel of them. Sand in shoes is also a horror scene - if school can remember that if she won't put her shoes on, it's probably because there's something wrong, you may be in better shape.

My son never wanted to sit in circle time during kindergarten - but he always knew what was going on, even though it never looked like he did. Do your daughter's teachers know whether she is paying attention despite her apparent disengagement? It can be hard in such a big class with so little support. That seems like a lot of kids for one teacher, even without the special needs complication.

As to special interests - when my son was first diagnosed (at age 8 y.o.), at first they psychologist didn't see any special interests either. Then she realized that he was playing video games in his head! That was his special interest. He often wouldn't answer questions when someone spoke to him because he had to get to a "safe place" in the game in his head, so he could pause his game before he could talk. So his interest was invisible, in a sense. Also, his interests tended to be rather age-appropriate - video games, Thomas when he was little, etc. So they were there, they just weren't as "in your face" as some.

Having a great teacher is a huge benefit. The teacher needs to have adequate supports in the classroom, and adequate understanding of your child. Most of our kids aren't that difficult - you just need to take the time to understand what they're trying to tell us. Lots of schools don't want to do that.

I agree with iat, I think she is misdiagnosed. It is quite common for AS to be misdiagnosed as ADD, and I really don't think one unique special interest is really a marker for AS. What happens more is that whatever interests them at the moment, interests them intensely, and they really really really want to stay on that topic.

If she has severe sensory issues, it may be impossible to make school work for her, although I think there are some sensory tools you can try. Chewing, movement, and such are all activities that help AS children keep themselves focused.

I might be able to brainstorm some more later ... right now I have to go, but I wish you luck. I do agree with the others that homeschool would be a good solution for now, and am sorry that really is not an option.

That's cool about your kid feeling like a cat too, jat. Her father misses his prehensile tail. Thank you for telling me that special interests can be internal. Kayli has a very vivid internal life that she's just now able to tell me about.

A member of the autism team will be at her IEP meeting so we'll see where that goes. I had her on Adderall for about a month last year and while she could sit and work sometimes she still had social issues. She also wasn't eating and had meltdowns bad enough that they had to call me to come get her.

I'll take all the help I can get.

I can definitely relate to your post--my son is in Grade 1 also. He used to hiss and make a spitting noise like a cat when he was in preschool, which was a nightmare. The setting that you describe as Kayli's classroom is very similar to how my Aidan's preschool class was--lots of circle time, noise, not much academic instruction, etc. Now that my son has a full-time aide he likes school a lot more. In his first grade class there is a structured routine which he thrives on.

I hope that you will be able to get more services for Kayli in the future. My son has an AS diagnosis on his IEP which qualifies him for more than an ADHD diagnosis would. Best of luck!