A voice for Annie and children with trisomy

Barbara Farlow has emailed to inform us about a recent publication in Pediatrics which gives a voice to parents and their children, like Annie, who have trisomy 13/18. Here are a few related links:

The news release from the University of Montreal: http://www.nouvelles.umontreal.ca/udem-news/news/20120723-children-with-trisomy-13-and-18-and-their-families-are-happy.html
Journal Abstract: http://pediatrics.aappublications.org/content/early/2012/07/18/peds.2012-0151.abstract

Canadian Press Article (Helen Branswell): http://www.globalnews.ca/canada/health/parents+of+babies+born+with+disabling+anomalies+report+they+enrich+families/6442684259/story.html 

Reuters: http://www.reuters.com/article/2012/07/23/us-parents-doctors-kids-clash-idUSBRE86M02O20120723

And a few videos about children with trisomy:

Mieko: http://www.youtube.com/watch?v=cteTcuI-xYI
99 Balloons:http://www.youtube.com/watch?v=th6Njr-qkq0

Sustainable Family Care Forum

This post is intended mostly for parents of children (including adult children) with disabilities and other family members in their families. There is a new web-based discussion group called the Sustainable Family Care Forum that is part of  research project that examines how families balance the demands of work and other life challenges with their roles and responsibilities of raising children with disabilities.  If you are a parent or family member who might be interested in taking part, please take a look at the forum and consider joining in. If you know  of others who might be interested, please pass on this information to them. Thanks!

Institutional Dehumanization

Sometimes, in our current discussions of human variation in the age of genetic manipulation, it is easy to forget the central role of the environment  in shaping human behaviour. This video from United Nations Television provides a powerful example of institutional dehumanization and of the power of families and communities to overcome dehumanization.

A transcript follows the cut.

Keith Olbermann on California’s Proposition 8

We’ve been under the cone of silence over the many propositions passed as part of the US election season. But this one pretty much speaks for itself (though apologies that I have not found a version of this that is captioned–if anyone knows of one, let me know and I’ll link to that version.)

h/t Feministe

Community Based Research: New Workshop and Class at the U of A

CUP Banner: CUP Symbol on the left (Blue half-circle opening upwards on the left with a black dot inside with the letters CUP underneath) and the words "Community-University Partnership for the Study of Children, Youth, and Families" on the right. The background is a faded close-up of flowers.

The University of Alberta is offering two community based research related events that may be of interest to those who are part of the What Sorts Community.  Why?  Much of the research that our members participate in is directly related to the experiences of actual people in actual communities and one of our major non-research related goals is strengthening ties between universities and the people and organizations that exist around them.

Please note that registration deadlines for the following events are close at hand!

Excluded: Sorry, it’s not your right

Recently there’s been one story after the next in the news about an autistic child, and about special needs children, being removed (physically, in some cases) from public spaces: A Minnesota church, more than one airplane, a kindergarten classroom. I’ve followed many of these cases on my autism weblog and the discussions that have emerged have often gotten long, and been more than heated—-they’ve been full of vitriol, hostility and disgust that parents of disabled children have so little regard for others’ safety and are, indeed, so seemingly careless of the needs of others.

Parents of disabled children do care very much; indeed they may be the most sensitive of all to how strangers feel when a child “misbehaves” in public. But being parents of kids who often don’t get understood, we have to take care—to advocate—for our kids. Experience has shown me that, at the end of the day, if my husband Jim and I don’t stand up for Charlie, people just walk by. In May, I wrote a post entitled Excluded: On Keeping the Faith about the daily advocacy a parent of a disabled child, and one’s disabled child, find themselves performing everyone we step into a public place and I’m reposting it here.

Love You to Pieces: Creative Writers on Raising a Child with Special Needs

not sure whether there description is right as the other book after this here also does only from the point of view of the one raised
Here the description of “Love You to pieces”
“The first literary collection—fiction, essays, and poetry—on raising special-needs children
The first collection of literary writing on raising a child with special needs, Love You to Pieces features families coping with autism, deafness, muscular dystrophy, Down syndrome and more. Here, poets, memoirists, and fiction writers paint beautiful, wrenchingly honest portraits of caring for their children, laying bare the moments of rage, disappointment, and guilt that can color their relationships. Parent-child communication can be a challenge at the best of times, but in this collection we witness the struggles and triumphs of those who speak their own language-or don’t speak at all-and those who love them deeply.”

morehere

Here a book I was part of

What Adults with Disabilities Wish All Parents Knew, Reflections from a Different Journey

see here
I start on page 18

Edited by Stanley D. Klein, Ph.D. and John D. Kemp