Let me backtrack a little.
Until 2007 Smiley had a full service, everything that a child with complex special needs could want, and lots of family support too. As well as the school, there was a holiday service or summer camp when the school was closed, if she needed it, and respite on demand. The dismantling of this service began with a change of management and continued as the cutbacks began to bite.
This year the summer camp only lasted for two weeks. And it was perfect for her, with lots of fun and activities with other children and adults that she knows and likes, finishing with a disco and cake today. But now there is nothing. I was offered July provision for her. I laughed. A tutor? For Smiley? A stranger coming to the house to 'teach' her stuff? My daughter won't even look at strangers, let alone do things for them. Anyway it's the holidays, and she doesn't want lessons, she wants entertainment. But tutors are not even allowed to take her out.
I have told her that it is holiday time, I've tried to explain, but as she has no words I do not know how she will be when the bus does not come on Monday, Tuesday, Wednesday and on and on and on.
I love having her at home with me but I cannot be everything to my child. I am her Mum. That means I have a hundred different roles already, from playmate to advocate. But I cannot provide expert OT, SLT or PT*, or why did these therapists study for so many years? Nor can I provide all the facilities and experiences at home, that she can get at school. A swimming pool? Sure, I'll just dig up the back garden. A special appearance by The Coronas? Perhaps I should tweet them. A disco? Yeah we have them in the kitchen, but it's not quite the same with just two people.
It's a taste of what may be ahead. She will be 18 in two years time, and if things don't change she will be affected by the same waiting list lottery that is affecting this year's school leavers with learning difficulties. Their last day is past, and for some their future is currently empty. Only some will get an adult service in the autumn. What will happen to the others? What will happen to my daughter when she gets to 18? Will her last day then really be her last day?
*occupational therapy, speech and language therapy, and physiotherapy
It's a scary thought. Special needs adults will never have it easy but we will always need to be there for them, without the support we need ourselves. There simply aren't enough professionals to help out yet funding is still being cut. It's a disgrace but of course the minute we complain about it, we are seen as a nuisance.
ReplyDeleteWe can't win. But we always keep trying.
CJ x
@Crystal Jigsaw - Thanks so much for your comment. Yes we will keep trying, and writing about it is part of that x
ReplyDeleteIt's a fine balance when dealing with more than one diagnosis in the family to keep harmony and accord especially when needs are vast different. I hope you find a way to keep all on a level during the summer break and although this is not Smileys last "last" day, I understand the growing anxiety for when that day actually arrives. We spend doing fighting for children's services and advocating for their entitlements we naturally push the day they become adults to the back of our minds to be dealt with "later". I guess now is the time to start forewarn planning for Smileys needs and get a plan In place. If you need someone to shake a placquard call me. If you need someone to chain themselves to government buildings nekkid... Call someone with a better body lol (I'll still shake a sign though ;)
ReplyDeleteGreat thought provoking post darlin xx
Thanks @Petunia, and yes I see lots more protesting in my immediate future, and would be delighted to be shaking a placard beside you x
ReplyDeleteI am sending you so many many hugs
ReplyDeleteits so incredibly hard when there is nothing we can do to have them have fun and enjoy themselves
Jack is only 14 and he hasn't had any summer provision for two years cos the local council deems children aged 12 and over capable of making their own fun and entertainment. It sucks and I have been campaigning but to no avail :(
ReplyDelete@Floortime Lite Mam - oh she will h ave fun, I'm drawing up a list of stuff we can do, but it will be much more limited than summer camp.
ReplyDelete@Lyndylou - that's a complete nonsense and so unfair on Jack xx
Sending hugs your way. I understand the worry. But you are such an amazing mom. Think of all the young people who have parents who aren't as educated or dedicated to their needs. I know that doesn't make up for loss of services, but your strength will carry her far--even if you don't necessarily believe me about that. Think of all you've done for the past sixteen year. Would you have thought you'd make it this far?
ReplyDeleteGosh what a massive worry for the future, I do feel for you, we all just want happiness for our children don't we, it doesn't seem much to ask.
ReplyDelete@Tessa Jordan - No I wouldn't, though I tried very hard not to look ahead...
ReplyDelete@Suburbia - That's it xx
Oh Blue Sky, I so feel for you and Smiley and your situation. It's crap, really it is. Im just back from holidays and the first piece of news I hear is this massive investment in the building industry to build (among other things)in the health area. My first thought was 'right, build some health centres. Fat lot of good with services cut'. Your post proves my thought....
ReplyDeleteI wish I lived closer, I'd pop in and pour you a glass of wine!
xx Jazzy
@jazzygal - You're right, because services also generate jobs and income for people and the economy. Priorities are just nuts. xx
ReplyDeleteThank you again to the hundreds of people who've read this post so far, I really appreciate your interest x