'In each other's eyes, we are enough'

'In each other's eyes, we are enough' By Louise Kinross “Monkey man. Monkey man.” A two-year-old stood over my son in the sandbox, pointed at his face, and chanted the words like a mantra. It took me a second to make the connection. Then blood rushed to my head, it hurt to breathe and my eyes stung with rage and shame. My son’s ears did stick out like a monkey’s. But I wasn’t in the mood for educating. “Time...

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Checking off the 'to do' list

My husband always tells me to focus on one thing at a time. But sometimes the list of things 'to do' for your child can seem alarmingly long. Your mind is in a state of constant vigilance, trying to keep all of the various balls you juggle in the air. Sometimes we forget to acknowledge that in fact we have made some progress. So I thought I'd do that today. Here are some things to be grateful for at our house: The IPRC went better than expected. Ben was given the designation mild intellectual disability and everyone at the table...

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Book review: Out of My Mind

Heather Morgan wrote to me about her daughter Kaitlyn (above) who wears leg braces for problems with bones in her feet. Kaitlyn, 10, had read Out of My Mind, a book about a girl with cerebral palsy, and could relate to many of its themes. I interviewed Kaitlyn to find out more about this book. BLOOM: Describe the book Out of My Mind. Kaitlyn Morgan: Out of My Mind is about an 11-year-old girl named Melody who has cerebral palsy and can't...

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Be still

Last night I sat for an hour in silence on a little red cushion, with my legs crossed in front of me, my hands on my legs, palms facing up. There were candles lit and the scent of incense burning and the silence began with the gonging of a bell. I sat among 15 or so others, trying to follow my breath as my abdomen filled and emptied. Whenever a thought entered my head I said 'thinking' to myself, then focused again...

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Disability 'is a part of me, but it's not all of me'

I had the privilege of speaking at an education day for Toronto hospital communicators on Friday. I was asked to speak about writing about people with disabilities. I spoke about how too often we fall into using value-laden language that either portrays children with disabilities as victims or as heroes -- as somehow 'below' or 'above' the rest of the population, but not as a regular part of 'us.' Lucy Nyman is a woman with a disability who spoke eloquently about what is was like to grow up with cerebral palsy. She talked about living in...

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Dinner is served!

Friday nights Sallyanne comes and Ben cooks for all of u...

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Of interest

Jennifer Johannesen has a lovely post about sons Angus and Owen (above), siblings and 'equipment' called Brothers, vacations and wheelchairs. "I am reminded of something in these photos – Owen’s wheelchair was an integral part of him and his identity," Jennifer writes. "Angus used to hang off of it, sit in it, decorate it, push it around… If we were walking down the street together Angus would always seek to maintain contact...

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Globe of dreams

My dear friend Anne-Marie wrote about participating in Ben's life plan day on her blog Circle of Friends. The photo to the right is a globe of dreams Ben and the group came up with. It includes having his own house, working as a zookeeper and travelling. Anne-Marie was able to participate in the brainstorming from her home in Dartmouth, Nova Scotia, through skype. You'll want to take a close look at Anne-Marie's blog, where she writes about...

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Life plan day

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Happy weekend

Ben (right) has attended a sailing program run by Holland Bloorview for the last couple of years. I'm including this photo in a slide show we'll use tomorrow at his first life-plan session. To me his expression says "happiness...

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When is a house a home?

Last night I attended a workshop by PLAN Toronto on how to plan for a home for your adult son or daughter with developmental disability when you can no longer care for them. We were encouraged to think outside the box: If all things are possible, what would our son or daughter like in terms of a home? What are their underlying values in terms of living? A home needs to reflect the person's personality and choices. The general consensus...

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'We are still you and me'

We are graced today with an exquisite essay from Susan Senator (second left), author of Making Peace with Autism and The Autism Mom's Survival Guide. From left are sons Nat, Max and Ben and husband Ned. Here are a few of my favourite posts on Susan's blog: Autism helps me get over myself, Look behind the lack of language and Group home proposal, in brief. Thanks Susan! Louise 'We are still you and me' By...

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This and that

Sholom Glouberman is a philosopher in residence at Toronto's Baycrest Centre for Geriatric Care, author of the new book: My Operation: An Insider Becomes a Patient, and founder of the Patients' Association of Canada. This health-policy professor who spent years working in health care felt he 'knew the ropes' before undergoing his first major surgery. He was wrong, and writes about how the acute-care system doesn't respond to the needs of people with chronic conditions and renders them passive. I found this Maclean's Magazine interview with...

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'Have friends'

Last night we looked at the 'Globe' section of Ben's passport planning. This includes dreams for the future -- about where to live and work, about people in your life, and leisure activities. I wrote a list of physical activities like "ride horses," "go kayaking," "swim" and other interests he's been able to nurture at overnight camp. At the bottom I threw in "have friends." He went down the list and immediately...

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8 a.m. workout

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'I'm a good person'

Last night Ben and I added three qualities to the 'Backpack' section of his iPad, which he'll use at his upcoming passport session (to plan his life). Proloquo doesn't have an image of a suitcase, which is what this section is actually called, so we improvised with a backpack. This section focuses on strengths and positive qualities the person brings with them. I wrote out a number of descriptors and asked him to pick which...

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