Under the 'hero's' cape

Two days ago Jennifer Johannesen brought me a copy of her book. It was a shiny paperback called No Ordinary Boy, about her life with son Owen, who had multiple disabilities and died almost a year ago at age 12. Today, my copy's cover springs open, the pages are dog-eared and there are traces of food and bath water dispersed throughout. No Ordinary Boy explores themes that will resonate with...

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Education: Is it 'earned' or a right?

On Monday I heard a fascinating CBC interview with Chris Mburu (left), a lawyer with the United Nations Human Rights Agency. Chris is the focus of a documentary film -- A Small Act -- about how a $15-a-month sponsorship from Swedish teacher Hilde Back enabled him -- a young Kenyan living in a mud house -- to go to school and eventually Harvard. Chris decides to find the stranger who changed his life and creates a scholarship program...

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School update

Ben continues to enjoy his school. His assistant was away yesterday, so one of ours went in. This is what she had to say: It was great to see him parade though the high school crowd with a smile on his face and see how proud he was in his body language. I think there is some further adapting that needs to happen for participation in all classes, but I know he is being challenged and enjoys where he is. He enjoys being challenged,...

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'Perfect' or 'abnormal:' Which one is your baby?

By Louise Kinross It all began so simply. I was a couple of months pregnant with my first child. My obstetrician asked if I wanted maternal serum screening. I knew this blood test (called alpha-fetoprotein or AFP for short) detected risk for Down syndrome in a fetus. I also knew it was known for false-positives. I had never seriously thought about prenatal genetic testing. "Can you ask me again so I can think about it?"...

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Visit a new parenting resource online!

For the last year I've been seconded to Holland Bloorview's Family Resource Centre to help better integrate BLOOM resources with child disability information in the resource centre. Holland Bloorview's new online Family Resource Centre brings together parent and professional advice, community resources, Holland Bloorview programs and BLOOM stories organized by topic. Visit the Family Resource Centre and click on any of these...

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Inclusion: One teacher's experiment

Sheila Dobson (above with son Ben) teaches a class for students with developmental disabilities at Sutton District High School in Ontario. She and colleague Andy Hagerman designed a three-week unit called Inclusive Recreation to bring together four classes for students with disabilities with a regular Grade 11/12 Recreational Leadership class. She shared the challenges and rewards of her first experience with inclusion in this...

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Friday wrap-up

It's a wet Friday and I had to pick Ben up at school because he was sick, so he missed the football game (though we did drive by and see the teams lined up wearing all their kit in the pouring rain!) I wanted to point you to some interesting dialogue on the blogosphere.  Claire at Life With a Severely Disabled Child wrote a piece about how she doesn't associate her daughter's disabilities with who she is as a person:   I...

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Good news

Ben has a new supply SNA supporting him at school. I asked him how things were going socially for Ben: "Socially, the other kids are amazing with him! There are a handful who always say hello, ask for high-fives, and try to get his attention when we walk down the hall. I leave him with the other students from the deaf program in the lunchroom. They have made their own section in the lunchroom and they have always made a welcoming show to Ben when we enter. He sits with them, and I sit at the other end of the lunchroom. I tell him that I'm there,...

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Hate crimes: We have to speak up

A number of bloggers wrote recently about the death of Gemma Hayter (above), a 27-year-old British woman with intellectual disability who was tortured and beaten to death last year by five youth she considered 'friends.' Disability hate crime begins with verbal abuse Can the word retard kill? This murder might convince you Seeds at Schulyer's Monster: Gemma Hayter's case is a stark reminder that the seeds of societal disregard...

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Check out this amazing New York Times story and video that follows a young man with autism through a one-year transition program designed to ready him for independence. Above is a poster he designed to illustrate his dream of becoming a famous animator and illustrator and having his own apartment. Autistic and seeking a place in the adult wor...

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School update

This just in from Sallyanne, who is acting as Ben's special needs assistant:  Ben was invited to the football game next Friday and is very excited about it! The football game? The school he's going to is known for its athletics. Alden, one of the school monitors, has taken a liking to him and invited him. Alden also spoke to the captain of the football team who is going to introduce himself to Ben next week and...

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Friends in need, friends indeed

Friends in need, friends indeed By Amy Julia Becker I have 300 new friends. Well, not really. But last week, a woman who knows I write about having a child with Down syndrome sent me a Facebook message and a friend request. I responded. She then "suggested" approximately 300 new friends, all men and women (but mostly women) with children with Down syndrome. On one level, these are artificial friendships. I've never met these people....

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Grief: Is it optional?

Following Ezra -- a memoir by Tom Fields-Meyer about raising his son with autism (pictured) -- was released last week, and sparked an interesting discussion on the New York Times' Motherlode parenting blog. Autism, one parent to another includes a question from a Motherlode reader about Fields-Meyer's assertion that he never grieved for Ezra, and a response from Fields-Meye...

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Take the fear out of blood work

Most children are nervous about having blood drawn, but kids with autism can find it particularly worrying and overwhelming. That's why Autism Speaks today released a Blood Draw Tool Kit for parents, with a companion guide for professionals. The tool kit includes tips on how to prepare your child, relaxation and distraction strategies, a visual schedule of what happens during a blood draw, 'first-then' boards (see image...

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Comments

Hi -- A few people have let me know that they have tried to post comments but the comments don't come through. Sometimes if you are sending a long comment, the comment function will 'time out' and you will lose what you tried to submit. For anyone having trouble posting a comment, please e-mail it to me at lkinross@hollandbloorview.ca and I will post for you. Thanks! Lou...

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Kumon, stingrays and latitude/longitude

This weekend Ben fed chopped-up sardines to stingrays at the Metro Zoo -- stingrays that had had their 'stingers' removed. On Saturday he went to Kumon with his brother Kenold. Since I began Ben on Kumon just before the summer, I have always picked up the books and had him do them at home. That's because this Kumon centre is an extremely busy one. The students do their class work in silence and whispers in the...

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Health rationing and quality of life assumptions

An interesting article in the Canadian Medical Association Journal last month looks at how decisions are made about who will be treated during pandemics or when intensive-care resources are limited. Can rationing possibly be rational? The article notes that provincial protocols exclude people with developmental disability or certain chronic conditions from accessing a ventilator during a flu pandemic. We've written before about similar U.S. protocols. Ontario is developing new critical care triage guidelines we'll want to follow over the...

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'He is just my son'

'He is just my son' By Susan Senator Nothing is ever what you think it’s going to be. Even if my firstborn son had not been autistic, motherhood was crazy different from anything I had ever experienced or been prepared for. From the moment that my ‘birth plan’ of soft lights, music and foot massage was scrapped in favour of a strong epidural, life with Nat (photo left) was a wild ride. When I think about myself in those...

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Day 2

Yesterday went better than expected. I'm so grateful that Ben has been given this opportunity. Three years ago I was told that Ben couldn't attend this program and I accepted that. I did what others said was best for him. I know there will be many challenges but I believe being in a regular school that is focused on learning -- not life skills -- will support his development and give him a range of experiences he wouldn't have otherwise....

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Why pictures matter

George Estreich is a poet and college instructor who became a stay-at-home Dad 15 years ago. The Shape of the Eye (above) is his elegant, thoughtful memoir about stories: the birth of his daughter Laura, who has Down syndrome; his own family history, which includes a mother who watched Tokyo's  firebombing as a teenager and a father who dies of cancer; and the cultural narrative of...

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