Hi everyone.
I'm so glad that Mumsnet have started a special needs section. I started a strand around 18 months ago when the section hadn't been created and I'm afraid I've been away for ages. Here's something I've just added onto by old thread (in a different section) - it's more appropriate here:
as follows:
Just thought I'd update you all about our lives!
We came home from our first session of surgery last Friday and since then my dd has needed near as dammit 24 hours attention. Cerebral Palsy (right sided hemipegia) has caused my dd's right ankle to throw itself outwards and without her AFO splint, she's been walking on the outer edge of her foot for the last two years or so. The ligament on the inside of her lower leg has tightened (spactisity) where the outer ligament has loosened.
Her op last week involved the tight ligament being loosened by being snipped in various places and has a pot on. Whilst under anaestetic, the doctor did more snipping than planned so although it was envisaged she would be partially weightbearing after the op., she is now non-weightbearing for six weeks! Aaarrrrggghhhh! I'm now a 24 hour nurse and minder as well hs being a mum to another, partner, homemaker and general dogsbody!
She is now sat up in bed (which I'm sat on the edge of) in what has temporarily been transformed from a dining room to a sideward! It's a good job we've got a tele/video in here (yes I know - instant electronic cbildminder but as needs must!)
Dd is off to dad's house next week for four nights (same routine there) so I'm looking forward to my break. It's likely dd will need more surgery in 6 - 9 months time as the damage caused by the tightening of the ligament is more extensive than initially thought. Next time it will be on the bone
It's made me realise that although I have a child with phys. dis/learning difficulties, she fortunately is at normal times relatively mobile and we can live a near to normal existance. Presently, I'm having to sleep apart from my partner and cannot start a long project (as I am having to check on her all the time - she wants to get out of bed and cannot understand with her learning difficulties that she has to stay in bed with her leg up!) If she were permanently in this position then respite care etc. would be in place.
Another thing I've noticed is the difference of attitude of the public in general when they see a wheelchair user approaching. My dd doesn't normally attract attention (or assistance) until she tries to talk or displays challenging behaviour for example. That's when the 'staring ' starts. But the wheelchair is a tool that warns people in advance that someone 'different' is approaching. Parents of autistic children will know how what I'm talking about because their children do not obviously appear 'different' until they display non-conforming behaviour, which unfortunately, some people find difficult to accept.
So thanks for reading. Looking at some of your messages, your children are still quite young whereas my dd is 11. I was looking at some photos of her aged 4 and she managed with Piedro boots to walk quite straight then she needed an AFO splint. As time's gone, nature as interfered and she's needed medical intervention. Not to worry though - it's under control I'll let you know whether my mental state is in a few weeks time!