Ladies Camera Club

14 Aug 2012

This girl

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


Anonymous said...

I have prayed for you and your beautiful daughter for years and I will continue to do so. Awesome tix. So amazing that you can go.

Anonymous said...

TICKETS!!!! Oh Wow!!! I'd have loved to go to either games, but even if I'd been able to get tickets, the cost of getting down, etc was just too much at this time in our lives. I've already got withdrawal symptoms..... no idea what to do with myself until the Paralympics start..... and you have tickets! Have a great time.
And Congratulations on securing your place at college, Belles. You are going to have a great time. What will you be studying?

Regarding the Mobility part of your DLA - please re-appeal..... My son got the lower rate, which we are OK with as it pays my fuel when i have to take him somewhere. He is physically able to use public transport, but mentally unable to get on a bus with more than half a dozen people on it! He got DLA before we had an official diagnosis of his High Functioning Autism. I was that "nut job Mum" too! :-D Genetics are fascinating, aren't they. I hope you finally get some answers... by any chance are you going to Christies in Manchester?
Enjoy your Games. Jude.x

Sallyh said...

You are both truly inspirational x
That must have been so difficult for you to put down in black and white, yet it was heartfelt and heartwarming to read.
Big hugs
Sally xx

Sue said...

I hope things get sorted, but I fear they won't. It is terrible the way people are treated when it's obvious they need some help. You aren't asking for the moon.

Hope you have a lovely time at the Para Olympics.

Love your pooch:)

Debo said...

It's SO b****y unfair!!!
(especially knowing that my nephew's mum exaggerated HIS symptoms to get the highest rate so she wouldn't have to work! And she got it!)

BUT - YOU/WE (especially YOU) have Ellie! And she IS amazing!

Sue said...

((((hugs)))) the clothes issue made me smile as it has also always been a problem for Dan ( now coming up to 19 ) We weren't allowed to buy any clothes with "bumps" on and seams on socks hurt- he still turns them inside out! Yesterday he showed me some football socks he bought while shopping in Liverpool the other day, they are textured and has extra "bits" for support. He put them on to play footy last night and told me that they feel really weird - i just said ohh that because they give your feet extra support- when he was young he would have taken them off and chucked them in the bin but he just said " ohh i'll just have to get used to them then" LOVE him!!
I hope Ellie enjoys college- both Meg and Dan do MUCH better than school- transport is always a pain. Mine are lucky to get it but we have had some awful drivers in the past and it gas just increased to £160 a term each - good luck with the ever continuing struggle xxxxx

Jaki Morris said...

Mrs, you know you need to SKYPE me to go through 'stuff' I'm here every day after 1pm and JUST DO IT


Christine said...

The system is so unjust - I feel for you having to constantly fight for what your daughter most definitely needs and deserves. My heart goes out to you xx

Paper Paradise said...

I echo the words of all of the comments. You have all had a rough ride for sooooo long. There are so many issues which need sorting and I just hope that everything soon comes right for you all. xxx

Anonymous said...

Keep on fighting.
Your a great mum
Love you.