I received another note from Jared’s service coordinator:
I wanted to let you know that from today on, Jared will be in Mrs. XXX’s (1st grade) class every day for math. I am in this class with him. This decision was made so that he could be in a team-taught classroom. He will still be in Mrs. YYY’s class for all other subjects. If you have any questions or concerns, please let me know.
Here’s my response, mostly placed here so that I don’t lose it:
I’m afraid I don’t understand what you mean in your letter. I’m certainly not an educator, so I don’t know what the advantages of a “team-taught classroom” are for Jared. What I do know is that while Jared deals with change better than many autistics, changes like this are usually accompanies by a certain amount of anxiety and stress for him. Considering that his assistant has been changed, does changing his math teacher, his math classroom, his method of instruction and his access to the break-time de-stressors in Mrs. YYY’s class make sense? Also what advantage do we hope to gain by using a team, considering that Jared has such a hard time dealing with more than one person at a time? And the biggest piece of information missing from your letter is why this change needs to take place. Is Jared doing poorly in math? I he doing so well that he needs more advanced lessons? Why is this change worth making him anxious all day? Please understand, I want to support you and the other members of his team, but I feel like your short note was a little too short. If you’d like to expand, you can reach me at…
They’re trying to turn me into one of those crazy parents who fights with the school about everything, they really are. I don’t want to be that guy that turns the IEP meeting into a shouting match. I don’t want to be the father that makes the teachers afraid that he’s lawyering up. I want to be the friendly, jovial parent that the teachers like almost as much as they like his son. But as Jared gets older, that might not be in the cards.
There’s a hypothetical question that crops up every once in a while in online autism communities, and it’s this:
“We can give your child a shot now, and when he wakes up tomorrow he will no longer be autistic. Would you like us to give him the shot?”
Strangely, this question comes up a lot more online than it does in “the real world,” mostly because as hypotheticals go, it’s pretty far out. For instance, while we don’t know much about what causes autism, but we know quite a bit about its physical manifestation in the brains of autistics. One of these is that autistics have a different structure to their brain than other people. Instead of a spiderweb of interconnected neurons, autistics seem to have columns of brain tissue with more linear connections.
The reason this is important is that your brain is you. The structure of your brain determines not only the way you think, but the kind of thinking you can do. These differences in structure are a part of why it can be so difficult for autistics to learn certain kinds of information, and also why they can be so good at other kinds of thoughts.
So when you talk about a “cure” for autism, you’re talking about something that would require re-wiring the structure of the brain, taking it apart and putting it back together. And that’s impossible. Not just difficult - impossible. Have you seen the pictures of the enormous spiderweb in Texas? Imagine a spiderweb a hundred times larger and denser, and then imagine trying to use a pair of tweezers to reconnect every strand to turn it into the Taj Mahal.
Worse yet, all of our memories are wrapped up in the way that our neurons are connected, so even if you could rearrange everything, you’d be destroying every memory, every behavior, every function of the brain in question. So rearranging the brain would be like giving somebody a complete lobotomy - like turning them into an infant.
But even if you could get past all of the technical hurdles that make a cure impossible, you have to ask yourself, “what would a cure mean?” It would mean changing the fundamental identity of the person in question. The way that a person thinks defines who she is. So part of the “cure” question is, “Do you want to trade your autistic child for a different child?”
Would I trade Jared’s problems for somebody else’s? Would I give up his strengths in order to get rid of his weaknesses? If Jared didn’t scream and cry when things didn’t go his way, would he still be completely unwilling to lie to me? If Jared was better at making friends, would he still amaze me with his sense of humor? If he didn’t wake me up in the middle of the night, would he still walk everywhere holding my hand telling me how much fun we were having?
So needless to say, I’m not looking for some impossible cure. I like my child and wouldn’t trade him for somebody else. Yes he can be difficult, but to be perfectly honest, an autistic boy is no more trouble and worry than a teenage girl. And in two months, I’ll have one of each.
Last week we had a meeting at Jared’s school to go over his IEP (Individual Education Plan). The teachers made some changes to his goals and PLOPs (Present Levels of Performance), but the real discussion was about two other topics: evaluation and transition.
The school conducted a series of evaluations of Jared’s skills in February, and they presented the results to us at the meeting. Jared is doing well – they find that he’s capable of doing age-appropriate work (first grade, since he’s six) and is performing in the average range. We were pretty impressed.
For Jared to score in the average range, that means that he had to perform exceedingly well given that he has the added distractions and problems that are a result of his autism. He missed a bunch of questions because he lost focus, and wouldn’t complete a test that involved writing with a pencil (he can’t bear the way it feels). And when you factor in that he started with a language delay, it’s clear that he did magnificently.
To make an analogy: It’s like if Jared finished in the middle of the pack in a marathon. A marathon that he gave everyone else a head-start on, and then carried 30 pounds of weight on his back and had to take a break every 5 minutes. Maybe he didn’t finish at the same time as a world-class runner, but he ran a much more difficult race. I’d like to see even a world-class runner do that.
So I’m impressed. While he struggled on the writing, he was above average in reading skills and matrix reasoning (typically a strong suit for autistics). And he also got marked down for not answering questions the way that the test requires them: for instance, one of the tests requires kids to identify pictures. Jared labeled one a “sculpture” but didn’t get credit because they were looking for “statue.” He also said “shape” when they wanted “rectangle,” but we’re talking about a kid who knows heptagons and parallelograms. I think he knows rectangles.
His distractability came into play in other ways as well: when asked “who brings letters?” he said “a fireman brings ladders.” After struggling to convince Jared that they were talking about mail, Jared said, “Daddy brings in the mail.” Absolutely true, but not what they were looking for. And I’m happy with the result because funny is always better than accurate at our house.
Another factor may have been that Jared is far-sighted, and didn’t get glasses until after the IEP meeting. He certainly looks cute in them, but I wonder how much better he would have scored if he could have seen the the test better.
But the end result of the meeting was the most gratifying: they’re kicking Jared out of his school. Next fall, Jared leaves the calm confines of Ruth Eason and heads off to Kindergarten at the same school Sierra attended. He’ll be going all day to a class of NT (Neuro-Typical) students with some additional support. His current school is recommending an assistant for the first quarter, but he may or may not get that.
We were worried at first about “mainstreaming” Jared beceause Kellie and I both know how cruel kids can be. I spent just about all 13 years of compulsory education being picked on at best, and beaten up at worst. But at 48” and 66lbs, Jared is above the 95th percentile on the growth charts (PDF) for both height and weight. And keep in mind that he’ll be 6 and a half when he gets to kindergarten and the other kids will be 5 and a half a the oldest. Anybody that messes with him in school has a death wish. And don’t get me started on how strong he is.
So things are looking good for Jared. For the other kids in his class? We’ll see.
Coming up: Sierra is entering middle school in the fall – will any of us survive the ordeal?