dd is 4 and has cerebral palsy - started in Foundation class in ms school at the end of September and went full-time after October half-term. She has 1-1 support for 32.5 hours a week to cover lunches and break times too. The school are great and have done absolutely everything they can to make it work including proper rest times and times for extra snacks to keep her energy up. She loves school and enjoys her friends but it is just not working.
She has slowly gone from being pretty well dry day and night to loads of wet pants and beds. Her appetite has gone, she has become moody and her obsessive behaviour has crept back in. It is so painful seeing a little girl who can normally walk unaided indoors, fall over constantly and by the end of the day she is literally unable to do more than crawl a few steps.
I've seen the community paediatrician today and she has said to go to half-days immediately which we will do but dd is devastated. She has told me that she is sick of having cerebral palsy, sick of having appointments all the time and being tired. 'I just want to go to school and play with my friends mummy'.
It's not fecking fair I've battled for the statement and won, I've managed to get her most of the therapies she needs. But there is one battle I will never ever win, the only battle I want to win and as her mum need to win. I can never ever stop her from being disabled and it is not fecking fair.
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Have realised I have slowly 'lost' my dd since she started school.
9 replies
Hangingbellyofbabylon · 06/12/2010 21:33
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