Monday, November 2, 2009

This and that

This post is a mixed bag.

Saturday was the first night we went trick-or-treating with Ben in a wheelchair. We used to pull him around in a wagon (because he’s tiny), and he would hobble up the stairs to people’s doors or we would carry him on our backs.

But this year it made sense to use his new wheelchair, which he now uses whenever he’s out.

It was an eye-opener to realize how many homes were inaccessible, with two to three steps up to the path, and then numerous steps up to the door. Our house is probably the worst: we live on a steep hill and have about 30 steps up to our house (we bought the house when I was pregnant with Ben).

Most people didn’t come out of their homes to hand out candy. They waited until the kids got up to the door and knocked. So there were at least a couple of streets where we were forced to roll by every single house, without stopping, because we couldn’t make it to the door.

I’ve always thought of our neighbourhood as being welcoming and friendly. But it’s not from a wheelchair.

Check out this new web site about Fragile X, developed by a non-profit group of parents and professionals called the Fragile X Research Foundation of Canada. The group says this most common cause of inherited developmental disability lacks awareness and research funding. I hope we can interview one of the parents in the future.

And this new collection of stories by parents of children with disabilities looks promising: My baby rides the short bus: The unabashedly human experience of raising children with disabilities. It includes a piece by our guest blogger Elizabeth Aquino.


I believe Fragile X shares with epilepsy an abysmally low rate of awareness and funding. It boggles the mind.

I'm sorry to hear about your accessibility issues and hope that Halloween wasn't to disappointing for the ladybug.

And thanks, too for the shout-out!

It would be interesting to compare the research dollars devoted to different childhood disabilities.

The ladybug wasn't too disappointed -- thanks for your interest!