I have a few items of interest today.
Earlier this year, Michigan forced its schools to stop awarding diplomas to high-school students in special education. In the past, all graduating seniors, despite ability, received a diploma. Last month I received my son Ben's report card and it really bothered me that in addition to the report on how he's meeting his IEP goals, I received a form that lists the 18 required and 12 optional credits needed for a diploma, and in the earned-this-report and earned-to-date columns beside the list of courses, appear 32 big fat ZEROS (yes, even though there are 30 total credits, for some reason Ben ended up with 32 zeros). I haven't spent much time thinking this system through, but it doesn't seem right to me that students with special needs do not have their efforts recognized. And I don't appreciate having this brought to my attention every time he gets a report card. I'd rather they saved their ink. What happens in your neck of the woods? Are high-school students with special needs eligible for any type of diploma?
Studies have shown that challenging behaviour creates the greatest stress for parents of kids with special needs. Yesterday morning when Ben woke up at Bloorview he began picking at an open wound on his ear. For the last couple of years Ben has struggled with skin picking -- compulsively picking at scabs or bites and preventing them from healing. He has a scar under his nose as a result. We've tried many things to manage this -- though not a behavioural approach which I guess I should follow up on. A psychiatrist who saw him before his surgery felt he was in severe distress related to not being able to communicate fully, lack of friends, chronic pain, and seeing his siblings grow up and do things he can't. She felt his compulsive picking was a way to block out the difficult stuff and self-soothe. He's on Prozac, which doesn't seem to be helping, so we may increase his dose. He also, at his own request, wears gloves. He knows he's not supposed to pick but he just can't stop. It's hard to see your kid hurting himself and it's even harder when it happens when other people are around, I guess because we're socialized to follow norms in public. I felt a mix of sadness, shame and frustration when a nurse helped me get Ben into his chair and he just wouldn't stop picking, to the point there was blood on the sheets and his gloves (which, of course, he takes off to pick!). It makes sense that this behaviour would intensify given everything Ben's been through. It's just one of those hard things to cope with as a parent.
Now I see the moon, by Elaine Hall, out at the end of June, is a memoir about raising her son with severe autism. Elaine created The Miracle Project, through which she engaged children on the autistic spectrum to create and perform an original musical, which later became the subject of an award-winning HBO documentary. The title of the book comes from an ancient Chinese proverb: "My barn burned down, but now I can see the moon."
The case against perfection: Ethics in the age of genetic engineering. Harvard professor Michael Sandel says our quest to create the perfect child reflects our drive for mastery over life and endangers the view of human life as a gift.
This is a horrifying story about a Boston teenager with a developmental disability who was attacked by a mob of nine on a busy street in daylight. A neighbour said that at least seven cars passed by during the attack and no one stopped or honked.
Monday, May 17, 2010