seven whole weeks. School is finished, and so is summer camp. In many homes this would be a cause for celebration and plans for holidays and days out. But not here. I've mentioned before about the conflict of interest between my son's wish to stay in (asperger's syndrome), and my daughter's need to go out (cerebral palsy). This always comes to a head during long school breaks. And this year the summer break is longer than it has ever been before.
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