Blessing

As parents of children with disabilities, we don't take anything for granted. So when my son came shopping with me at a massive grocery superstore yesterday and navigated all the aisles on foot, I couldn't help feeling giddy and grateful. It's easy to move on to the next worry or fear or regret, but sometimes we need to fly our flags in celebration (in this case, Tibetan prayer flags)...

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With a little help from my robot

The first randomized trial into the effectiveness of robotics in improving walking in children with cerebral palsy was launched at Holland Bloorview yesterday. The $500,000 clinical trial is funded by CIBC. The $400,000 robotic device was donated by Three to Be, a foundation led by Dana and Jared Florence, who have triplets with cerebral palsy. Wesley Magee-Saxton, 12, demonstrates in this Global repor...

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I like Wonder Baby

I don't usually write about contests, but when I went to the site promoting this iPad giveaway, I was impressed. Wonder Baby is a resource for parents of children with vision impairment and multiple disabilities -- written by a mom -- and funded by the Perkins School for the Blind. The site has articles, resources, a Q and A section, a blog and toy recommendations. There are lots of ways for parents to share advice. Great resources, and you could...

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'My brother knew what to do'

By Meriah Nichols I went through the windshield of a car when I was four years old, back in the day when seatbelts were charming accessories. The glass shredded my face, the head-on collision gifted me with brain injury coupled with a quirky auditory processing disorder. My deafness came later.  Events of great magnitude seem to have a way of silencing the world and oneself. The accident silenced...

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The Capability Approach

Donna Thomson, author of The Four Walls of My Freedom, speaks about how she adapted Nobel prize-winning economist Amartya Sen's Capability Approach to explore how people can create a life they value in any situation of adversity, including severe disability. Donna was part of our BLOOM speaker series and she wowed our audience. Thanks Donna! Loui...

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Links

Wonder "I won't describe what I look like. Whatever you're thinking, it's probably worse." A fifth-grader who's always been home-schooled because of severe facial differences enters middle school. For ages 8-12. Read the NY Times review. Love me for who I am Songs for differently-abled children and their families Loving Lampposts trailer For high-school athlete with Down syndrome, age is an issue The need to believe in the ability...

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A magic bullet or a better life?

I read this article in Nature yesterday: Gene hunt is on for mental disability. The story describes the search for unidentified gene mutations that may cause unexplained forms of intellectual disability. This scientific ‘hunt' around the world is made to sound very exciting, but the reasons for undertaking it — the potential benefits and outcomes for real people that justify the enormous investment — are a bit murky. The...

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Flippity flop

This is a piece I wrote four years ago about Ben's unusual ears and the plastic surgery to correct them that wasn't successful. I was reminded of it because last week I attended a Grand Rounds by Jennifer Johannesen, author of No Ordinary Boy, in which she spoke about how challenging it is for parents of children with disabilities to make good medical decisions. That statistics, the assurances of specialists -- which in our case...

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Homework

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Friends? Where?

By Cheryl D. Peters Many of the blogs I follow regularly have been talking about friendship a lot. Even here, Louise has been talking about it as well. (Side note? When I read about Ben's birthday party, I wanted to call Louise and ask if I could come. Everyone needs and deserves friends along this journey called life. A little background about myself and my family. I am a young (ish) mother to two beautiful little girls, Lauren...

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'My friends dropped off'

We are fine enough is a stunning film that chronicles the life of Charlie, 5, a boy with severe autism, in still photos and the candid words of his mother Cynthia Bartlett. It was produced by photojournalist Marc Schlossma...

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A must read on community

Rachel Cohen-Rottenberg blogs at Journeys with Autism and contributed a brilliant post to a collective blog on Neurotribes called Autism awareness is not enough: Here's how to change the world. Two of the points she made stopped me in my tracks. Remember that talking with a disabled person is not an heroic act. There is absolutely nothing required in the way of superhuman patience to communicate with a person with a disability,...

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Stuck in the nest

Last night two parents attending Donna Thomson's talk spoke about trying to obtain funding to create a group home for their adult children. One dad noted that at age 21, when schooling ends, so do any kind of meaningful daily activities for their children. The parents said that in their research, they had learned that there are about 21,000 adults aged 21 to 36 in Ontario receiving Ontario Disability Support Program funding...

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Pain

I left our talk with author Donna Thomson on a high last night. She filled my head with ideas for creating a life my son values, new economic and philosophical lenses for looking at disability issues, and the notion that we as parents could align ourselves as a political movement with other groups involved in giving and receiving care across the lifespan (seniors and children). At 1:30 a.m. Ben woke me up complaining about his right...

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Author Donna Thomson speaks tonight!

I am thrilled that Donna Thomson, author of The Four Walls of My Freedom, is our BLOOM speaker tonight in Letting go: Find 'home' for your adult child (click on link for time and other details). Here Donna talks about her book at the International Festival of Authors in Toronto. Hope to see you tonigh...

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More on friendship

I had the privilege of speaking with two other parents about friendships and children with disabilities on TVOParents last week: The social world of kids with special needs...

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'I manage Carly Inc.'

At the age of two, Carly Fleischmann (centre) was diagnosed with severe autism and an oral-motor condition that prevented her from speaking. Doctors predicted that she would never develop beyond the abilities of a small child. Then, at the age of 10, she had a breakthrough when she typed a message on her therapist’s laptop. Seven years later she’s in a gifted program at a regular Toronto high school. Carly’s Voice: Breaking Through...

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IQ Schmy-Q or 'IQ is overrated'

It bothers me that services for adults with developmental disabilities in Ontario hinge on intelligence quotients (IQ) alone. When we tried to get service at an agency that serves children and adults with intellectual disabilities, we were told that Ben's psych assessment from last year wasn't adequate because it didn't state IQ. Eligibility is restricted to those who score in the 2nd percentile or under in cognitive functioning. Ben's assessment is a detailed, 10-page report documenting testing over multiple visits. It provides...

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Links

Disabled student sidelined during choral performance Little monster New ski frame to help disabled child...

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Ben and the Raptors

Marjorie took Ben to a Raptor game for his birthday last night. Here's her account: Ben loved the game so much!!! The first thing was we moved seats as the usher saw how hard it was to get down the stairs. We went from 300 level, highest level to 100 level, lowest. It was very exciting and we sat in wheelchair seating which means no stairs, close to family washroom, close to PSP games, cup holders and ordering food from our seats, woo hoo. Ben...

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Unlocking my self

In honour of Autism Acceptance Day, The Joy of Autism blogger Estée Klar writes a moving piece for Holland Bloorview's Family Resource Centre about what her son Adam, above, has taught her as a parent. Thank you Estée! Loui...

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