Monday, November 7, 2011

Self advocacy

Image from Self Advocacy for Young Adults
I read a post on The Thinking Person's Guide to Autism a few days ago. You really should read it yourself if you wonder about disability rights for severely disabled people. Here's a link - it'll just take a few minutes to read (although the comments will take longer).

This, and some other posts from Autistics Speaking Day have got me wondering about when we should get msk involved in his own IEP meetings. He's getting older, and at some point he will need to make decisions about his life. On the other hand, lots of talking, especially about him, makes him uncomfortable. Trying to involve him in these types of conversations, by asking questions or prompting him to speak, is therapy, and pretty hard therapy at that.

One thing I love about his middle school is that they have team report card conferences for every kid in the school. These remind me of IEP team meetings, with much less paperwork and formalities. Even at that, msk attends, but is only pulled into the discussion occasionally. We look at his work and talk to his teachers. He moves between observing us from across the room (and listening, I'm sure, with his incredible hearing), and being pulled in to answer a question or display some work. I think he's at least a little uncomfortable. I know I am. But we plug through, and I believe it's good for him to see that we all care about what he's doing in his classes.

IEP meetings, though... I'm just not sure. There are a lot of people in a small place. The most useful parts of the meeting (at least in my eyes) are when we brainstorm about issues or problems or possible paths forward. We discuss, with smiles, about some of his special skills. I wonder if this kind of talk, even if we didn't ask for his contribution, would make him uncomfortable to the point of him acting out. And during the meetings, I really work hard on listening, taking notes, contributing, and thanking team members. I'm not sure I could focus that well if I was keeping an eye on msk and honestly, feeling a little uncomfortable about his interaction, or lack thereof.

It's got to happen at some point. We're talking about a kid who is at least as sharp as your average 12 year old. And we're talking about big decisions as we come towards a high school transition. We just need to figure out a way to implement something that  pulls him in in a positive way.

I'd love to hear some suggestions. What experiences do any readers have with significantly disabled students attending their own IEP meetings?

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and The Smallest Twine


  1. I worked at a school for special needs students, and I went to several IEP meetings. I have a memory of a teen with Aspergers who came in to his meeting. Some of his responses were pretty awkward. I think the presence of the child is a good thing, but it can throw off the meeting. I noticed that for a lot of the meetings, the student would come in for a portion of the IEP meeting but wouldn't stay for the entire time. Maybe if your son comes in for a segment of the meeting, everyone can get a feel for what having him involved is like without stressing him by making him sit in on the entire meeting.

  2. @Laura Y
    Sounds like a plan. I think because of evaluations and transistion plans and the like we'll probably have more than our usual number of IEP team meetings this year. I'll bring it up at the next one which will be in a few weeks.
    Thanks for the input!

  3. cfer - been thinking about this -my daughter (developmentally dsiabled) just managed a student lead report card conference which her great teachers and teacher's assistant helped her prepare for. That's different than the vaunted IEP meeting of course. But one problem is the assumption that the IEP needs to be so stiff and so legal - what if it was all or in part a converstation designed to include the older child? Is it circular that an IEP goal is participation in the IEP - but that's a goal for the team, as well as the child. need to keep thinking about this one....


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