This tag is associated with 15 posts

Getting healthy again

Deane was supposed to be at camp this week, hanging with his friends, chatting with the cute counsellors. He was going to be a junior “nurse’ this session. Instead, he is intubated and sedated in an out-of-town hospital. Five days ago, Deane woke up late at the cottage, groggy and definitely not himself. Checking his … Continue reading

When there’s no getting around it

I was standing around with other parents – mostly dads because that’s what you do at hockey rinks – and the kids were staring. When they’re this age, they usually don’t say anything, but their gazes rested too long to be polite. The wheelchair attracts attention. Sometimes it is the iPod we have mounted on … Continue reading

Label my child – if you must

When I talk to someone I’ve just met about Deane, I don’t use the phrase cerebral palsy. In fact, unless it is important, I don’t even mention that he is disabled. This has led to some awkward situations, but I’m willing to risk that to avoid labelling Deane. I’m afraid that if I say “My … Continue reading

Our most important gift

The U.S. TV anchorwoman who went on air to respond to an email she received criticizing her weight gone viral online. It has received a phenomenal amount of media coverage. But I thought it was worth adding a bit more. I’m not interested in debating whether the anchor, Jennifer Livingston, is obese. She admits that on a … Continue reading

Life’s not fair

I haven’t done it in years. Different events trigger it, but in the end it is always the same. I’m lying on my bed with my fists clenched, yelling through my tears. “Why? I don’t understand! Why me? Why does this have to happen? It’s not fair!” I pound the bed with my fists. I … Continue reading

What he’s trying to say – Part 3

I sat in a corner of my son’s classroom with a knot growing in my stomach. I’ve been through this before. I was there with the speech-language pathologist, an OT who specializes in communication systems and two of Deane’s educational assistants. The purpose of the meeting was to show the EAs how to connect Deane’s … Continue reading

What he’s trying to say – Part 2: the VOCA

I can’t begin to count the hundreds of hours I’ve spent programming devices to give Deane a voice. Add to that the number of hours I have sat in meetings setting goals of what he should be able to do with those devices and I’m sure there are weeks that I’ll never get back. In … Continue reading

What he’s trying to say – Part 1

Communication. I am a journalist. I communicate for a living. My husband is in marketing, which  – no matter what you think about it –  is all about communicating a message. The sermon at our wedding was about communication. We live and breathe communication. When Deane was a baby, the focus was on his mobility. … Continue reading

Finding a circle of friends

I always sit up and pay attention when disability issues appear in mainstream media. That was the case when I saw a personal essay in The Globe and Mail written by the mother of Ges, a Grade 4 boy with an unnamed disability. The story was entitled “What I’ve learned about the compassion of children.” … Continue reading

What we wish we had said

Reading Twitter last night when I was supposed to be checking my daughter’s hockey schedule, I fell upon a tweet from Bloom, the blog from Holland Bloorview Kids Rehab Hospital. Bloom’s blogger, Louise Kinross is the inspiration for Disabled Families. The way she writes about her son Ben is moving and compassionate. Her heartfelt honesty … Continue reading