Monday, May 17, 2010

This and that

Happy Monday!

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.

Reactions:

8 comments:

Louise, there's so much here to think about and mull over -- so many interesting and tragic links, too. I am sorry to hear about Ben's picking -- how it must break your heart to know of his suffering, his depression and frustration. That you have these struggles in addition to his physical ones must be really wearing for both of you. I send you thoughts of healing, as always, and answers to your questions. May they come and you be guided.

At my school within the TCDSB(a Catholic high school in Scarborough), students who have special needs, including those who have developmental disabilities, try to get either diplomas, the Ontario Secondary School Certificate, or receive a Certificate of Accomplishment. The requirements for the OSSC are to have 14 credits (7 compulsory, 7 optional), and these courses may be modified or be alternative courses suitable to each student's abilities. If one does not have the requirements for either a diploma, or OSSC, students can be awarded the Certificate of Accomplishment, and of course get to participate in the graduation ceremony. I hope that all schools in Ontario follow these guidelines, as student should be recognized for their achievements!

Below are the details about the diplomas, and certificates, page 12:

http://www.edu.gov.on.ca/eng/document/curricul/secondary/oss/oss.pdf

My grandmother picked at her face, later in life, when things were quite awful for her. After reading your post, now I understand why...

I am waiting on an upcoming meeting to review Gabe's IEP and to plan for next year. Truth be told, I'm exhausted emotionally over it and this journey is only beginning. I agree with you about the school saving it's ink!

Louise, I hope you're doing well somewhat. Please give Ben a hug from us.

Hi everyone --

Elizabeth, thank you for your caring thoughts.

Anonymous -- thanks so much for sharing this information about the Catholic school board. I'll have to find out more about differences between the public (in this case Toronto) school board and the Catholic school board

And Lianna -- I can certainly relate to your feelings of angst about the IEP, etc. To be honest, I spent enormous amounts of time preparing for IEPs in Ben's early years. I can remember ordering all of the Ministry's curriculum guidelines for each of the grades. Perhaps we are an anomaly, but I never found that the schools followed the IEPs well. In retrospect, I would go in with a few key goals you have for Gabe, and concrete ways of tracking his progress. Let us know how it goes and I will definitely pass a hug to Ben for you. Thanks for thinking of us!

Hi Louise. The link provided above should be standard across Ontario as this information was provided by the Ontario Ministry of Education. Ben's efforts and achievements I'm sure, will be recognized!

The issue is MI is soooo frustrating to me! I went to HS in Ohio, where students in special ed still got diplomas. The special ed program/IEP follow-up in my district was not good, but at least they had all their hard work acknowledged. I work with teens with Marfan syndrome, my disability, and recently learned one of my teens is not allowed to attend her graduation because she's been on home bound study. I was so upset! I think our kids go through enough without having to be banned from or otherwise not recognized at important social/academic events.

Lianna, good luck on your son's IEP meeting! I've also just come across a book that had really great information on the IEP process, in case you're interested. The book is called The Parent's Guide to Speech and Language Problems by Debbie Feit, with Heidi M. Feldman, MD, PhD. Although the examples used have to do with speech and language disorders, the information is universal and I plan to pass it on to my other Marfan families.

Finally Louise, thanks for linking to my blog here! This is a fantastic website and I can't wait to visit everyone else's blogs and read up on back articles. I've worked in patient advocacy for a long time, but now that I find my son having some impairments I feel like it's a whole new ballgame.

Thank you for writing Maya -- you have a wonderful perspective to bring to our discussions at BLOOM. I hope to hear more about you and your son!!!

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