Wednesday, 13 July 2011

When will someone listen?

I'm fed up now!

All my son's life I've been battling people to get them to listen. When he was born it took a whole year to get someone to listen that there was something wrong. It took 18mnths of me saying 'I think he's autistic' before they finally listened and did the assessments. It took 3 years of me saying ' his speech isn't right, hes not progressing' to be told that actually I'm right and he needs speech therapy. Iv always said that his upper body is affected by his Cerebral Palsy. They (the doctors/physio/OT) have always said 'its only lower limbs affected' the summer before he started nursery his OT did a hand function test and then agreed his hands were affected too.

Since Dude started at nursery I've been bringing up that he's finding writing difficult. He's having spasms in his hands and cant make the physical movements to write.He couldn't count when he started nursery despite all my efforts. OT had said that when he went up to his current year she would sort out a computer to help with his writing. This has never happened. I fought for a year for special seating to be put in place so that he had supportive seating to allow his hands to be freed up enough to try and attempt to write. The seat provides support to his lower body. Dude has dynamic tone which means if his legs are working hard to keep him upright then his hands/arms are too. You try and write with your arms in spasms! its not going to happen!

This years report has just come home. Dude can not write. He can mark make with some marks having meaning. He can not write his name, he can not count to 10 on his own but can get to 6 OK. He cant use phonics to sound out words when trying to read. He can only read very few words on his own, mainly I and a. He cant read basic words. I have been telling them this for 2 years now. Nothing has been done to help him. They're just leaving him to fall behind and its frustrating and upsetting both of us. His seating isn't being used and i feel that is part of his problems with writing but i also feel he really does need technology to help him. Our biggest problem is he has nothing in writing stating what help he needs. A kid like Dude should have a statement of education, care plan, IEP's etc..... Dude has IEP's which i have no input with and only have toileting and physio targets and that is all. He is 5.5yrs old now.

He needs help but no one is listening!

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