Friday, October 20, 2006

My Journey with my Son

We don't have a formal diagnosis for my eight-year-old son as of yet, but we kind of sort of think that he's got mild Asperger's Syndrome. For autistic kids, they have an extraordinarily self-defined world which they live in to the exclusion of the "real world". For "Aspergie" kids, they live in our world, but they view it through their own set of lenses which often don't make much sense to everyone else living in the world with them. AS kids tend to be genuinely confused, frustrated, or rageful at the actions of people who do not align with their own rules (which no one else may understand) which give order to the world they find themselves in.

My son's school year so far has been horrendous. We pulled him out of school two weeks ago, and he's had home instruction via visiting teachers. On Monday, he'll go back to school in a new class, with an instructional aide, with a whole new set of groundrules for everybody to understand what makes this kid tick. Welcome to the world of Special Education. Some thoughts on the experience so far.

1. I may never be able to forgive his first teacher. I don't hate people; I tend to only get angry. But I deeply hate this woman. I hate her hair, I hate her face, I want to do evil, painful things to her. I'm having Umbridge-like fantasies of scratching on the back of her hand until blood drips from her knuckles, "I will not torment my students in the hopes that they will not disrupt my lesson plan."

2. I love my child's principal. And the Special Education Director, and the Superintendent. They are genuinely pulling out all the stops to make sure that my son can be respected and loved for being the funky, funny, genuine kid that he is.

3. It's hard being on the School Board while trying to negotiate this situation for my son. I keep hearing things like, "Until the Board does X we can't...Oh, I'm sorry." Or, "We never wanted you to know as a parent that X happened, but as a Board Member you need to know that, etc." Twice today in a meeting I had to stick my fingers in my ears and sing, "La la la."

4. My landscaping will never survive my son's need to self-soothe. (Won't my neighbors be PLEASED.) When he gets upset at home, he rushes out the back door, up onto the hill so that he can dig in the dirt. So far he's started a new terrace on the quickly eroding hilside and stripped most of the bark off a rare Kashmir Cypress tree.

5. Eczema is no fun. Not only is my son twitchy in his own skin (twirls, jumps, sits up down up down up when he's anxious), but he's Itchy in his own skin. He gets flare-ups all over his thighs and along his arms. Poor kid. (Reminds me--need to get a refill on that prescription.)

6. He feels tortured, randomly tortured, by his peers. (His words) In fact, they generally don't tease him. He's in a very accepting group of kids. However, he's so out of touch with what generally accepted social behavior is, that he interprets others as being out to get him.

7. He feels tortured by the world too. Why does he have to write the word he already knows how to spell? Why does he have to write neatly? Why does he have to be polite to a parent volunteer when she's talking about art and he HATES art? Why does he have to go play on the playground when he knows there are no more playground balls? Why can't he follow the custodian around school for a while to see what he does during the day? Why don't people see that they're torturing him when they ask him to follow these idiotic rules?

8. Every time I read an article online about Asperger's Syndrome, I start tearing up. My son's definitely on the mild end of the spectrum, but lordy, this is tough. I'm not used to being so "labile" while researching. (Note--to understand the second linked article, you should know it was written in response to the first.)

9. For all that I detest my son's first teacher (#1), there is nothing more incredible than the teachers who do understand him, or who are at least willing to try to figure him out. To call them saints simply isn't adequate. To watch them sit at my kitchen table, helping him work through science, writing, math, and reading, has been a gift to me. There's no pandering--they expect him to get the work done--but there's an abiding respect for a struggling child which is beautiful to witness.

10. In as self-serving an attitude as possible, thank God for my other two kids, one on either side of my son. Because everytime someone asks, "Is it something in the home?" I can counter with, "Well, see if you can see any symptoms in the other kids." This comes up fairly frequently because my son uses dramatic vocabulary: People torture him, scream their heads off at him, his homework chokes him, his sisters squash him, and the dog tramples him. An isolated interview without an understanding of who he is could land everyone in hot water.

11. When he's got a story to tell, he tells it. He'll often try to change to details to minimize his interpretation of what he may have done wrong, but he'll carefully walk through the story again and again with remarkable patience once he feels safe with his audience.

12. Have I mentioned that I hate his teacher? (#1, #9) Because other than claiming that he assaulted her when he tried to leave his classroom, after he had been TOLD to go to the office when he was upset and she stood in the doorway to block him, she also basically fabricated a story of him assaulting a first grader. Details all came out much later, but I give credit to Dear Butcher for figuring out that something was fishy about the tale of my son dragging a first grader out of line, pinning the child behind a door, and then kicking her, not only because it didn't sound like anything he would do, but because my son could not tell any stories about any children walking in line. No stories about doors, nothing.
Dear Butcher told the principal that our son had no story to tell, the principal thought that was odd too, she investigated with the First Grade teacher, and discovered, that, indeed, nothing close to this ever happened. Piss Me OFF! (First Grade teacher witnessed my son walking one way up a hallway and two first graders walking down a hallway. They met in the middle, neither group would give way, and so my son put his hands on the First grader's shoulders to rotate him out of the way. My son's Third Grade teacher was at the other end of the hall and reported it a targeted assault. Where the pinning behind a door comes into play, no one knows. Thank God the other teacher was in the hallway.) I distinctly hate that teacher, but I love that the principal knew my son well enough to figure out that if he couldn't tell a story than something was missing.

13. This is exhausting. I used to think that my son would grow out of this, or that we were being too lenient with him, or that he would learn a single coping skill to pull his life together. But no. This is who he is. A bright kid with an incredibly low frustration tolerance, a tendency to rage, a sensitivity to loud noises and certain clothes, and a competitive streak which is so pronounced that he cannot participate in games. He can learn how to cope with each of those areas a little better, but he's not going to snap out of this. And that means that we, his family, are going to need to stay closely attuned to him to help him survive.


Megan Frampton said...

Thank goodness you've got SOME clue about what is going on! And that your son is not being deliberately obnoxious!! My son sounds a lot like yours, just a little less so--veyr competitive, low frustration, attuned to if something has been moved in our morass of a house, but not noticing if I cut my hair, etc., etc. Takes FOREVER to get a story out, but remembers every detail.
Thank goodness for everyone but his initial teacher. Thank goodness you persevered to find out what was going on. Good luck.

Mailyn said...

I am so sorry that your son has this, I didn't know. I know it can be frustrating to deal with people who have problems but be happy that he has you as a parent because you try to help and guide him. A lot of parents with special kids don't give a damn. You are a great mother!


Kristie (J) said...

Oh Suisan - you're son is so lucky to have a mom like you, one who understands him, one who will stick up for him and one who will fight for him!!
And I hate his first grade teacher too!!

Suisan said...

Megan--Having his behavior finally reach a point where everyone could agree that Special Education was appropriate has been stressful, but ultimately a relief. And he's not just obnoxious, no. But he's always done well in school, academically, so the behavior just seemed like something the parents and teacher could work on. Now that the curriculum has caught up with him, it's clear that he truly has issues which require and IEP. THAT's a relief.

Mailyn--Thank you. I had issues too as a kid (and then different ones when I became an adult) but my parents couldn't figure out how to be helpful. So I guess that spurs me on to try to stay aware of my kids.

Kristie--Thanks. In terms of fighting, it's kind of funny to be on the school board, because just my walking into a room makes some administrators behave differently. And I know a lot more about education law than your average parent, so that's a touch intimidating for them too.

I can see how all that in the post can be confusing regarding his various teachers, but actually, his First Grade Teacher was great. She was also the one who "belonged" to the first graders in the hallway, and was the one the principal used to investigate the claim of assault. But my son's actually in Third Grade (should have been more clear), and it is his first Third Grade teacher I want to boil in oil. Now that he's moving out of her class, he'll have a new (second) Third Grade Teacher. Damn, that's confusing.

But I'm glad to hear there's ample hate to go around. Because, hoo boy, that one made an impression.

CindyS said...

I went and read the articles and WOW!! I thought Ryan's article was beautiful. My Godson has so many different issues that he has a hard time learning. There is something that will not allow information to pass from short term to long term memory, ADHA and anxiety. Then there are sensory issues also - the way his brain interprets what is placed before him etc.

I get exhausted with the things that his mother has to deal with just to get him some sort of education.

I hope that the people now put in place for your son will be able to help him with his learning. My only fear is that 'evil bitch' is still on his school grounds and might be looking for any excuse to send him up to the principal. Watch for her and if anything comes up you should go and tell the school that 'the bitch' is not allowed any where near your child.


Suisan said...

Ryan's article made me cry, actually.

When these kids get to a point where they are articulate about their needs, or their world, it's just heartbreaking to think what we have tried to get them to do.

My son has a loud voice and often yells right near my ear to get my attention. On the other hand, loud noises get him agitated. On one level, it doesn't make sense. On another level, it makes sense that noises out of his control annoy him, and the ones he make soothe him. You just have to know enough to see it that way.

Doug Hoffman said...

Is there more Asperger's these days, or is it merely a matter of correct diagnosis? I don't remember hearing about it in med school (mid to late 80s), but that's not saying much.

But you're a saint, Suisan. That's clear.

Suisan said...

Doug, I don't think there's *more* Aspergers. But two things have shifted in this diagnosis recently.

First is that people have recognized it as existing as more of a spectrum: not every AS person is a Rain Man; some are just more anxious and "quirky" than non-AS people.

Second is that many people previously diagnosed as having ADHD, and to a certain extent, mild OCD, are now be rediagnosed as having Asperger's. So if you look at all the kids and adults who were diagnosed in the 80s and 90s as being ADD or ADHD, the ones who never fully responded to medication, and reclassify them as AS, then you'll see a rise in Asperger's diagnoses.

What is also becoming more common is the "cluster diagnosis". This postulates that AS is co-morbid with very mild ADD and moderately mild depression or Early Onset Bipolar Disorder. People tend to refer to the "cluster diagnosis" as being only "mild-Asperger's"; I do it too.

It should be noted that although people talk about AS as being a form of autism, the psychiatric community isn't totally sure if that's accurate. It may be more close related to anxiety and depression with a learning disablity mixed in. Very hard to figure this out as there are no completely accurate physical diagnostic tests.

The last bit is a little scary--AS patients can react very badly to ritalin and other stimulants. So some early-diagnosed ADD/ADHD patients have experienced psychotic episodes while on their prescribed medication. It's another reason the ADD/ADHD patients are commonly rediagnosed.