Desired

Mrs Mum Would like to be able to trust her sons Worker again.

Somehow through a series of weird and wonderful and painful and heart-breaking magical moments, Mrs Mum ensured that Staff felt comfortable and inspired and capable.  This was only because she had always trusted them, she just couldn’t always get to them.  She the barriers that have been and still are in place are there for good reason and pliable when desired/wished.

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Not Alone

The realisation that you may not of been fighting alone is a truly lovely one. Recently an OT reminded me of good people which allowed me to see the good in a lot more too.  Happy today – who knows what tomorrow brings 😊

College

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?

STOP!

I don’t remember exactly when it was and I don’t remember why it was I just remember waking up at 3am after studying the equality act 2010 for Stephen all night and thinking something doesn’t add up. That would probably make a whole lot more sense if I knew what it was. I don’t know if I just can’t remember or if I ever really knew what had clicked.
I just know that I woke up thinking somebody – the council? The social worker? The CWDT? (Childrens with Disabilities team), the MP? Was screwing Marc over.
Come 6am Stephen found me in the front room surrounded by Marc’s files dating back to 2000.
Hundreds of letters, assessments, decisions, complaints, responses – spelling out that this country isn’t doing enough for my boy for me, begging me to see.
My life literally fell apart for the second time. All this information has been sitting under my nose for years and I had chosen the easy option and apparently ignored it. I still can’t imagine a worse kind of mother.
I’m writing this for my own sanity and for my mum who worries.
It’s basically a to do list. The steps I need to take to get Answers from everyone who has let Marc down and why, and to give him the life that he deserves.
Unfortunately the one answer Marc needs is why I’ve let him down.