My girl. Our girl. Your girl.
Mine, because she is mine. Our girl because she is ours (but more mine!) and yours because you have watched her grow through this blog.
This is she, on Saturday when a trip across the Mersey didn't happen (the ferry broke down). So the Spaceport centre gave us complimentary entry to their fab museum about space. Fun times.
Ellie is going through a huge transition both with growing and shifting from school to college. She is not coping with growing very well. There are restrictions in some garments that are creating havoc with her. This girl like clothes that are loose and flowy. I can't bear to see her struggle with close fitting clothing. A part of her condition is not being able to cope with texture and that includes labels and seams and elastic. Its difficult but she shall overcome this.
This was us tonight, on the way home from the Trafford Centre. I can't bear to see how thin she is at times but again, this is part of her condition. And believe me, this kid puts a lot of food away, daily. I always have the visor down so I can see her and talk to her. She melts my little old heart.
Talking of transition, the transition to college has been HORRENDOUS.
It will still continue to be a freak show of a journey because we can't get the right funding or help simply because she doesn't have a diagnosis. Just because she uses a wheelchair doesn't mean she is disabled in the eyes of the system. Having a diagnosis means you will fall under that radar but being issued one from the doctor means "sure, she is weak but we cant tell you why" and therefore you fall into this void that nobody (and I truly mean that - NOBODY) wants help you with. The other week I had to call upon Gateway (the service provided my Social services which act as a go between from parent to social services). Reading between the lines and with their lack of action tells me that they simply cannot help because we don't mistreat her or misuse drugs/alcohol. We felt cheated out of a few hours begging for help........and still, nothing came our way.
Claiming DLA/Mobility is worse. No diagnosis means you can't get the right funding. Put it this way, there are active kids with Autism that can ride bikes, skateboard, run, skip and jump. They receive either high or middle rate mobility because Autism is a diagnosis. Ellie cannot do any of those things and only gets lower rate - and even then it went to a tribunal where they had to see for themselves that she was clearly disabled. Then at the tribunal we had a Doctor asking why do we need to claim Mobility when we could catch the bus to where we need to go. This is how difficult things are.
But Mark and I do fight for her. It hurts so much but we do it. I have to make a nuisance of myself to all the services connected to her future both educationally and through the NHS. I'm sure I'm listed as the "nut job mum who won't stop whining" when really, its the whining and the constant demands that cuts a few pieces of red tape. Do I feel proud of this fact? In a way, yes, but its not elegant and its certainly not pleasant.
Aaaanyway. She has secured a place in college and a good one at that. It has the best pastoral care in the North West although she was encouraged to attend a more complex need college. We fought for her to attend a mainstream college as Ellies needs are neither complex nor mainstream........ she is just a little different. Pushing her into a complex needs college would be unjust as we think a mainstream college will allow her to flourish. After all, she did attend a mainstream school.
No matter, we are dealing with it and will continue to battle our way through until a diagnosis comes her way. We have a glimmer of hope with a clinical geneticist in a few weeks who will look into some deletions and duplication that have been found during some micro array tests on chromosomes 4, 22 and an extra bit on the X. Some suggestions point to Facioscapulahumeral Muscular Dystrophy and the extra bit on her X suggests a great deal of her current issues in relation to the duplication. Looking at the weird and wonderful deletion in 22 points to a lot of similarities but nothing specific. I seriously should have trained as a geneticist.....its fascinating.
Anyway, I'll leave you with a picture of these wonderful things that was given to me from a friend who won them in a raffle. She can't attend but knew we would love to go. And so we shall. Hopefully it will inspire Ellie somehow.
And no more of this - curled up with the poochy watching the Olympics - well, not for two weeks, anyway. I will REALLY miss it
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