Every day it gets harder to fight and every day I have to remind myself to stop feeling sorry for myself and put myself in Marc’s shoes , and what Marc battles every single day. His own body is fighting against him. What sort of mother has to remind herself of that?
Today was his annual review at college. There was nobody from any services attending. Just us , his tutor , his lsa and the senco. He has no moving and handling in place, no physio programme in place, no assistive technology advice and I’m clueless how to proceed. I was under the impression that his next annual review would be when he transfers over to an education health and care plan, but the college hadn’t received a copy of my request.
I also wrote to the MP on Saturday requesting an appointment for Marc and myself at his next surgery. Somebody called arranging for this to happen on Friday. They don’t know if there is any wheelchair access to the building so this could be a problem, despite the gentlemans offer to carry Marc and his chair in. We can’t even access the building to complain about Marc’s fight, because apparently that’s another fight.
Childrens services have also contacted today re my request for Marc’s personal budget stating
“Sorry ,I’m not quite sure I understand what you are asking in terms of a personal budget (PB ) for Marc ?”
If they are unsure then I’m not surprised that nobody else knows.
So many people go about their lives thinking that we live in a privileged country where everything’s politically correct, and we are not to treat anybody differently. It doesn’t matter if you are male or female, black or white, Christian or Hindu. But what about Marc? How are disabled children and adults being left on a scrap heap to fend for themselves? How are parents who just want the same as every other parents being met with brick walls every way they turn?
How is nobody else fighting for my boy?