Tuesday, September 27, 2005

Aspie Digest - September 27, 2005

Links

http://www.udel.edu/bkirby/asperger/ (courtesy of Gawdessness)
http://www.tonyattwood.com.au/

A fellow blogger -
http://aspergerteen.blogspot.com/

I'm Going to a Conference!

This just in - Tony Attwood will be conducting a series of conferences here in the US in the fall. He will be in my area on October 13, I have already booked a seat and will tell you all about it. (I hope my youngest son won't kill me for going to a conference on his tenth birthday!!! Yikes!)

(On Mr. Goldie's 35th birthday, I went out to dinner after work with a guy friend, who was from out of town and couldn't make it on any other date. There is definitely a pattern here.)

Dr. Attwood will also visit Seattle and Spokane, WA. (*and* our village in the middle of nowhere! Are we lucky or are we lucky??)

Click
here to register.

Currently reading:

"Different Minds" (sorry, that book is huge!)

I've been also advised to read:

"Parenting Your Asperger Child" by Alan Sohn
"The Oasis Guide to Asperger's Syndrome"
"Quirky Kids"

Quote of the day:

Stuart had trouble learning to generalize when to use certain greetings. Thus, he had been instructed to say "Thank you", "Excuse me", or "I'm sorry". At first, he only said these with cueing. Later, he learned to use these expressions spontaneously but it was not always appropriate when he said them. Once he even apologized to the door after banging into it!

"Different Minds", p. 192

Why did I have my son tested?

They say feedback is a gift. I've been getting gifts ever since my 12yo was born. Here are some of the things I've been hearing:

"Oh, don't you worry, he's doing fine. He doesn't cry, he doesn't fuss, he's just lying quietly in his crib" - one week old, heard from a nurse at the hospital (my son spent the first two weeks of his life alone in the same hospital where he was born).

"Why doesn't he play with other kids, has he been sick lately?" - one year old, a helpful Mom in a swimming class.

"He is like an independent planet. He just goes about his own business like he doesn't even notice the other kids" - 18 months old, another Mom at a home Bible study were we had a lot of toddlers and preschool-age kids.

"He ran away twice this afternoon. I took the class out for a walk and he just walked off our class's area. When are they going to transfer him out of my class?" - 3.5 years old, preschool teacher.

"I've never seen anything like this before. He sits there, drawing in different colors. Then, right before class is over, he covers his whole drawing in black paint" - 3.5 years old, art class teacher.

"A very quiet child. No complaints on my end." - four years old, preschool.

Basically, I12 was a very quiet kid who liked to explore, liked to keep to himself, and didn't like playing with other kids. As a baby, he wasn't too fond of physical contact, either. It was my first child and I'd had very limited exposure to kids previously, so I had no way of telling whether all this was normal.

Then, right after I12 started second grade, he told us one day, in a very casual tone of voice, that he and his friend had decided to kill themselves "because life was boring". Of course, the first thing I did was call the friend's Mom, who got mad at me. I didn't know what else I could do, so I asked his teacher for advice. The school put I12 on the record. Slowly, things started changing. Now, each time I12 did something bad or just plain odd, the school was looking for sinister motives. They started calling me at work on a regular basis.

"He has some really gross habits like chewing on his pen or picking his socks with scissors, the other students are complaining" - 4th and 5th grade, pretty much all teachers.

"There is something wrong with your son, just look at the way he walks – always with his head down. And he never smiles!" - 4th grade, guidance counselor.

"He is depressed."

"What is he being exposed to at home?"

"His special interests are computers, violence, and everything dealing with war and blood" - homeroom teacher, 4th grade.

And, of course, my personal favorite: "We are afraid that, when he grows up, he's going to kill someone, or himself" - 4th grade, the school principal.

I12 changed schools, because it was time for him to go to the middle school. His badass friend moved out of the area. I sent him to a computer camp, and he got interested in programming. He was participating in the school's gifted program, and was getting good grades. For a while, it looked like things were getting better.

And then, adolescence hit I12 like a ton of bricks. He started growing at a crazy rate. His voice changed. And God only knows what was now going on inside his head. All we saw was that, he lost all his friends, and his grades dropped.

He said he didn't need to have friends, or go outdoors, or play sports, or get good grades, because this was all pointless. But he still wrote computer programs. Some of them worked. One won a prize. He never talked about his programming hobby to anyone in school.

Because he looked like a teenager now, I12 was now suspected of being disrespectful and rebellious. Because he does indeed have a high IQ and is on the district's gifted lists, he was suspected of feeling superior to other students and teachers.

And then an even worse thing happened. I started getting calls from the elementary school about I12's younger brother. It was almost like the school eventually expected K9 to either turn into a second I12, or to be hurt and abused by his big bad brother. There were entirely too many labels floating around. If a label had to be put on my son, at least it needed to be an accurate label.

I12 started posting on Internet forums. He joined a programming forum, where most of the members were in high school, took honor classes, earned straight A's, had part-time jobs and girlfriends. Then came my son with his totally inappropriate posts.

I almost died of embarrassment when I saw what he had posted on the September 11th anniversary thread. He said that, every day, 150,000 people die on our planet, and no one cares. So why all the fuss about three thousand people that died? Or something like that. People thought he had written it for shock value. I thought it was just another one of his brain farts. He'd had those before.

Picture this - in 2000, after a surgery and a week in the hospital, my husband was released, sent home, and was assigned at-home care. So, when the nurse came to our apartment, the seven-year-old I12 stopped in the doorway, looked inside the room, and said, to no one in particular, "Is this brown lady a nurse?" Mr. Goldie and I were gasping for breath, grasping our chests, and apologizing all at the same time. Deep inside, I guess, both of us really wanted to drop dead.

Thank God the nurse had a sense of humor.

But, back to the 150,000 people, it took me a year to realize that he really believes in this stuff. You know, 150,000 people die every day, like it or not, so why bother about every individual one? Why not just accept the whole thing as a law of nature? I hope for his own good that he doesn't get to speak at my funeral, he will surely freak everybody out!

By the way, I emailed the mod on the programmers forum with an apology. It went along these lines: "I am his mother; he's only in 6th grade; and he's a really odd kid". The mod forgave us.

By the time I12 started school, I had finally realized that something wasn't right. I tried to blame it on my poor parenting skills. But my other son, while not without his own faults, was a completely different person. It's not that he was better or worse, he operated differently. Then I tried to blame it on lack of attachment when I12 was a baby - that I had not co-slept enough, hadn't held him enough (even though he really disliked being held), hadn't nursed him enough (even though he quit when he was five months old and no amount of coaxing could make him go back).

Then I thought about I12's brother - all the times he spent in the hospital; the three surgeries that he had; the time we almost lost him to pneumonia and dehydration; all the times I couldn't give him enough attention because I was busy with I12; the time when we had to put him into full-time daycare when he was eighteen months old. And it was in America, so the poor K9 couldn't understand a word his teachers were saying. He was miserable there, crying all day long for three months straight. So it wasn't as if my second son had it easy. But he turned out different. Why? By the time I12 was in sixth grade, I came to the conclusion that it wasn't just poor parenting. Something wasn't right on a much deeper level. What was it?

One day I was reading a book "
Protecting the Gift", by Gavin De Becker. One of the last chapters was on children with autism and autism spectrum disorders. What I read was the most accurate description of my son that I had seen to date. Could it be? No, impossible. Besides, I12 was finally doing well in school, so I decided to let sleeping dogs lie and not to investigate any further.

But just about at the same time, I12 stopped doing well in school. By the time I got a call and a request to come over and meet with the teachers, I had my mind made up. Something was wrong with my son, and this time I was determined to finally find out what it was.

Next time, I'll tell you how I got around to having I12 tested (it wasn't easy).

The Goldie has spoken at 12:30 PM


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