Stop the world, I want to get off.....................

...............And never get back on thank you very much.


After the good week last week and letting people know how a Self Directed Support budget can work WELL, I now find myself on a downer.


Not just any old downer, but that "reviewing budget" downer.
The one where Glasgow City Council make us sweat, jump thru rings and generally be in the corner stuffing our fists in our mouths and crying our eyes out with worry that the budget we worked so hard on last year will be cut, slashed,torn up, or even worse - put thru a shredder and you're told to just get on with it.
Meanwhile you are expected to keep a hold of what remains of your sanity.


Not an easy job and it's one that 
a) I don't get paid for
and
b) Didn't apply for.


I went into the Enable office this morning - had some paperwork to give Alisdair. I also wanted to check about booking some of our family based respite for Peter next month. Carol had said that Sara was keen for Peter to be there at Halloween and they could go out guising.


Hey  - we don't do no trick or treat stuff here in Scotland!!!!


Alisdar phoned Laura to check - when Peter's budget review is getting done.


It's tomorrow.


And they will not let on how much we will get till Laura gets to the meeting.


No clue to an increase, a cut, the same money - nada, zilch, nothing, zip.


All i DO know is that since Peter got his budget approved last summer, that others have been given a budget, only to have it slashed by up to 75%.


Ok, the sensible part of me says there is NO WAY that Peter's budget can be slashed that much. He is out of school, he is doing college, but less college than last year - that old chestnut - cutbacks.


Have these people not seen just HOW the SDS can CHANGE LIVES????


They obviously didn't see the presentation we did last week. How happy Peter is in the photos of various things he's done with his workers, the respite he's had. How much people have seen big changes in Peter in the past year - more confident, happier.


And the rest of the family are happy too.


And now i have to wait 24 hours before i know if i have a mega battle on my hands.


Again.


Do these people not realise how much families put in to caring for sons, daughters  brothers, sisters - for nothing much in return, but they are happy and well looked after.


I'm not asking for Peter to be cared for by others at humongous and outrageous cost to the city.


But neither did i ask for a child who has dodgy chromosomes and learning difficulties. 
Neither have i asked for the hassles, the fights, the family and friend fallouts over the years. The people who just don't "get" Peter and people like him.


I've not asked for my other children's lives to be turned upside down either. Days of running late to school because Peter's bus was late, friends who couldn't understand why they couldn't always just stroll home from school, teachers who don't understand WHY you can't just drop everything to get to an event with the Senior Chorus, or take part in young Musician.


Times when things kicked off and Essays might be late for Uni.


And me somewhere in the middle trying to make sure that life is "normal" and my kids don't miss out or get caught up in the politics of it all.


All i want for Peter is a good life.


Oh, and some reserves of sanity please.


I'm getting fed up with the hoops you have to jump thru.


I know in this economic climate thst you have to be careful with money.
BUT - i've been doing this caring lark for nearly 22 years.
It's only recently that we have been given a budget that really covers what meets many of Peter's needs.
Some things in the past have been promised and never materialised.
I'm still waiting for the worker from Capability Scotland, the funding for which was ring fenced about, oh, EIGHT years ago..
I'm still waiting for an apology from the Social Worker who messed up our visit to a shared care family, because the other SW went off sick and didn't bother to let anyone else know we were meant to meet them.


Oh - and crazy sw says it was our fault for not turning up for a meeting!!


Now - excuse me, i KNOW i'm good, but even I can't turn up for a meeting when i don't know where and when it's meant to be!!!
I'm good - just not THAT good!!!


Ok Rant over.


I have confidence that Laura will put up a great case for us tomorrow.
The Enable team KNOW we will fight it if the Council see fit to slash the budget.


And i know they will help us.


But honestly - do you really blame me for wanting to stop the world and getting off??