Friday, May 11, 2012
Thinking about residential care #Fridayrant
distributor of wheelchairs who just kept repeating the mantra about Smiley being a young adult and needing lots of support and being too old for a buggy. Even Smiley's occupational therapist expressed surprise at the lack of choice. I just had this feeling of rising panic. What is the point of keeping my daughter living at home if we can't go anywhere? Well apart from indoor shopping centres *grimaces*.
Then there's her legs. Something has happened to them. At first I thought it was my imagination, especially when no-one else could see the problem. But finally her physiotherapist saw her yesterday and agreed with me that her right leg is now more bent and her left leg is too straight *sighs*. And the windsweeping** is worse. She is uncomfortable in her sling and her shower chair and winces when I lift up her legs to put on a new nappy. So now I've got another round of appointments to organise and possibly new equipment to source, choose and fund.
I'm starting to realise how lucky I was to get ten years or so when I could work part-time with only the occasional interruption as Smiley just got on with growing and enjoying life. Somehow I assumed that when she stopped growing, she would stop changing, but that doesn't seem to be happening. Now I have to fit in appointments for Asperger's as well, plus trying to fix all the bits of me that keep breaking, and I find myself heading out most mornings to something.
More and more I see how few concessions the world makes to those with severe disabilities. Doorways that are too small and wheelchairs that are too big. 'Disabled toilets' that don't have hoists and some that Smiley can't even get into. Or they're locked and no-one seems to have the key. Walkways that stop short of the beach and are often covered in sand, so you can't really use them. Cafes where the tables are so tightly crammed together that I would have to put several on the pavement outside so that we could sit in comfort. Children's shoe departments that are downstairs with no lift provided - yes I'm looking at you Clarks. Firms that charge a fortune for unimaginative adaptations of very average vehicles and expect carers to be grateful. No wonder so many people with severe disabilities live in institutions or community homes. I'm not complaining about State support, it's the way the world is organised, the whole system, and the lack of information, even out here on the internet. Apart from a handful of bloggers, I really feel as though I'm an unwilling trail blazer. All I want is for a normal family life. One that is not defined or confined by disability and special needs. Is that really too much to ask?
**windsweeping is where both her legs swing over to one wide when she is lying flat - putting a strain on her back. If not addressed this could cause huge problems, including the possibility that she would one day not be able to sit in a wheelchair/buggy.