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.