Friday, March 21, 2008
Books and conversations and politcs and stuff
I'm reading this: Asperger's Syndrome and Difficult Moments: Practical Solutions for Tantrums, Rage and Meltdowns. I don't know if it's helpful or harmful to read it. Pervasive theme of the book is that once the child has experienced a rage, there is nothing anyone can do but to ride it out. The teachable moments occur as the child is building up to a rage, or during the recovery period after a rage. The fact that an Asperger's child has modeled the correct behavior and response to stress in the comfortable atmosphere of the clinician's office does not mean that the child is able to access that same information when they are under stress. Many "aspies" have excellent memory, but items in their memory are not easily accessible. I know this. I've described this over and over. Yet I still get phone calls saying, "Saul's upset. Boy oh boy is Saul upset. He's more upset than I've ever seen him."
"OK. What was happening just before he got upset?"
"Oh. I don't know. He just suddenly got upset."
And then the rest of the conversation is all about what behaviors he displayed WHILE he was upset, what punishments should be considered for his behavior, how very scary he can become if he cannot be calmed, etc. (Hint. He cannot be calmed. Deal with it. Here's a tip --- you need to work on preventing him from becoming upset in the first place. Remember? We talked about this a while ago. Remember? Hmmm? Lessening his anxiety and increasing his self-esteem comes from moderating his environment so that he is less likely to explode. Right? So why am I expected to lay the disapproval and consequences on like a trowel when you have failed to prevent another outburst?)
Reading this book, I'm stuck every few pages saying to my self, "Uh huh. Yup. Absolutely. No question about it. I know this. Why don't the professionals at the school know this?" It's affirmative to read that certain techniques are state of the art, appropriate, and respectful. And in the same breath, it's infuriating to know that the school thinks that these techniques would be inappropriate for him because he's...because.... Um, where is the because there? Because they are hard to apply? No, not really.
Do they think he's faking?
Most of it is that they really have no training in autism -- Their knowledge is all in the Oprah Winfrey version of Kanner's Autism: one day my kid was adorable and the next he couldn't speak. "I have this tear-jerking video right here to show you what he could have been." I have every possible sympathy for the heartache that these parents have gone through and continue to go through. However, that's not my child.
My child doesn't LOOK disabled. His face has the correct muscle tone. His eyes are the "right" shape. He doesn't flap his hands, tap his feet, or have tics. He has good muscle control and hand-eye coordination. He hears fine. He can carry on conversations. He just interprets what he hears in a very different manner than you do. Parallel conversations are the norm in our house.
I was talking to a friend this morning whose son is only five -- he's just like Saul. I had sent her a letter from a parent who was writing me to complain about all "those disruptive children" in the classroom. She and I are planning to push for a different elementary program, but first I wanted her to see what the general education parents are being told about special ed children by their very own general education teachers. Her response was interesting.
"It's racism. Poor and simple," she said. "If my child looked different, then he'd be patted on the head in a condescending manner and all the adults could congratulate themselves on their own charity in *allowing* that child to participate. If you look different, there's a different standard.
"My child looks the same as the others but has a different brain. Suddenly, there's no charity any more. If it doesn't make you feel good to be understanding, then there's no point, is there?
"I could explain to these people again and again and again that a doctor has diagnosed my child as having a developmental disorder, something wrong with his brain or nervous stem, and they will not give him the slack to struggle with his disability. He has to be pitch-perfect every day. If he isn't, then the teacher gossips to the room mom about how difficult her day is. And that room mom goes and tells four other parents about the child who is *allowed* to act up in class. If my child were drooling, they'd love having him there. They only want sweet idiots in the class. Not the ones that could really boost their test scores if you could just stop talking at them long enough to give them some room to breathe."
Wow. She catches on quick.
I got my first real "We need you on the school board" recruitment call yesterday. From a person who really wants me to be on the City Council, but who first wants me to run in a special election for a school board seat this summer, because then I could get some stuff done and run for City Council in November of 09 as a sitting school board member.
Are you fucking insane?
Did you notice that I got exactly nothing accomplished while I was up there because no one wanted to play ball with me? Why oh why oh WHY would I run for City Council from an active seat on the School Board? Sitting the special election out and then running for a city seat actually makes more sense, but hello? I don't want to run for city council. Zoning ordinances. Water reclamation rights. Public safety. Street lighting. How does one stay awake during a meeting like that?
And if you're so all fired to get a smart woman on the city council, why don't YOU run? If you want someone to run against the most recent school board appointee whom you don't like because the appointee said that she was using the school board as a stepping stone to city council, then, uh, why do you think it's a good idea for me to do the exact same thing? OR, why don't YOU run for school board and leave me the hell out of it?
Ugh. People. Most of the time I don't really like 'em too much.