Pages

Describe the Invisible in 15 Minutes or Less

It’s one of those weeks. At last count, I had 8 appointments scheduled, with only one of them for me, and that’s not counting each kid’s dentist appointment as a separate thing. For a girl who gets anxious having to be anywhere at a specific time, this ain’t my best week. But it happens that way sometimes – the usual weekly meetings (psychologist, occupational therapist…) are piled on with occasional ones. It makes everyone touchy – the boys are out of their routines (never good) and half the stuff is miserable anyway (read: dentist).

As an added bonus, this week is also Parent Teacher Interview time at both Liam and Finn’s middle school, and Rory’s school. I know there are some parents out there who look towards that 15 minutes neutrally, even happily: a little progress report, a chance to hear a few charming anecdotes from the child’s teacher, a chance to find out what exactly the kids have been doing every day besides, “Nothing, mom”.

I, on the other hand, spend the week or so before the interviews cramming: reading books, making notes, devising strategies, and washing down ibuprofen with red wine.

To be fair, Liam’s is usually relatively straightforward. He’s a great student: enthusiastic, bright, hard-working. But Finn and Rory both have challenges that, while obvious to everyone around them, are understood by sometimes no one.

This afternoon, I got an email from Finn’s French teacher. We’ve never met in person, but she and Rob met briefly at the beginning of the year. Then a couple of weeks ago, I got a phone call from her in the middle of the day, with Finn at her side. She was apparently at her wits’ end about how to deal with Finn: “He’s not doing his work in class, and I know he can, and he won’t, and it’s do INFURIATING,” and on and on. I empathized – this is an old issue with Finn, and one with needs a lot of active managing. We resolved to communicate more often about Finn’s participation and his work, and she seemed calmed. Since then, I haven’t heard from her, but I have been asking Finn if he’s making more of an effort in class; he’s said he was.

Then I get this message: It starts, “I blew up at Finn today” and kinda goes on from there. Apparently, not for the first time, Finn became vocally upset when he entered the computer lab with the class and found someone sitting in “his” seat. The teacher, having already told Finn that they did not have assigned seats in computer lab, lost it, and her note tells that she’s been over this ground with him before. I could picture it perfectly – Finn fixating on the issue of his place (his chair, his zone), and her trying to teach a lesson. She said she thought Finn had understood “weeks ago” because she had told him that, unlike when his homeroom is in computer lab, she does not use assigned seats with them. So after the blow up, she had Finn sit away from the rest of the class and write a letter to her stating he now understood the policy of the lab. She also wrote on the letter that she would try to listen to him when he had something to say, which I admired.

I’m the first to admit that Finn can persist with an issue he’s wrestling with, perhaps beyond what seems reasonable to me, or in this case, his French teacher. But Finn is not stupid; he is not deaf, nor thoughtless, nor confrontational, nor intentionally disruptive. In fact, he is startlingly bright, amazingly perceptive, extremely sensitive, and by far the most even-tempered of my children.

But he IS AUTISTIC.

He copes beautifully – in fact, he amazes me every day. I could go on for pages about how self-aware Finn is becoming, how much he tries, how little he shows what challenges he battles EVERY SINGLE DAY. But he does battle, and by the time he comes in the door at 3:45 or 4:00 he’s exhausted from negotiating the outside world for 8 hours. If he coped less well, maybe it would be more transparent. As it is, I’m pretty sure most people who deal with Finn on a daily basis don’t have any idea how differently he experiences being in the world than they themselves do, or than the kids around him do.

He’s developed incredible passing skills, but he’s still who he is. And honestly, if Finn wants to sit in the same place for French class every day, what the hell. Go ahead, I’d say. It’s one of those things that would make his day, his place, out in that big wide world seem more controlled, more familiar, more HIM. And those touchstones are few and far between for kids like Finn.

So I’m going to keep this post short(ish), and draft an email back to the French teacher. It’s going to thank her for the note, express my gratitude at her patience, and sympathize with her struggles to get the best out of what she knows to be an imminently capable young man. But it will also suggest she and I meet soon, so we can talk about how to look a little differently at the Difficulties and Challenges she sees, in light of some things she might not understand about Finn. It’s one of those talks Rob and I have had countless times with other teachers, with friends, with doctors, with drama teachers and camp councilors and other kids’ parents. But it keeps needing to be said, because no matter how many times someone hears the words autism, or Asperger’s syndrome, they aren’t necessarily closer to understanding my kid. As one of the presenters at the Geneva Centre Conference said repeatedly last week, “If you know one kid with autism, you know one kid with autism.” And no matter how smart they are, how well they dress – and Finn does dress really, really well –  no matter how funny or articulate they are, they are also coming from such a different place that you or I can never really understand. But we can try. And more than that, we can acknowledge, and then accept.

1 comment to Describe the Invisible in 15 Minutes or Less

  • Nancy

    Life is a challenge at the best of times. We are still not very good at relating to and accepting the incredibly different life conditions of people we deal with daily.

    We need constant reminders and admonitions. We feel heroic when we support one cause or another. People with physical challenges and their families are the real heroes. P

    Thanks for the education. I pray that you will find the strength be able to continue your quest for justice. It certainly sounds like you find yourself caught in a nightmare of bureaucracy daily. The great thing is that you recognise the dreams of Finn, Liam and Rory.

Leave a Reply

You can use these HTML tags

<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>