I got a newsletter from an organisation that provides information to families with disabled children recently. The introduction included this line: ‘for many families the summer holidays are a chance to recharge and take stock’. I of course expected the ‘but’ to follow, where they then acknowledge how very different this is for families of disabled children. But it didn’t. They left it at that. I found myself feeling angry that they did not understand the huge weight of the summer holidays for families of disabled children. It was of course a well meaning newsletter, likely dashed off in a hurry; but the anger I felt was reflective of the enormous stress that the holidays bring.
A report from the children’s disability charity, Contact, and another from Coram, in the last few months have highlighted the woeful lack of provision available for disabled children over the summer holidays. The Contact report found that 9 out of 10 families have been unable to find a holiday club or activity for their disabled child this summer. 9 in 10. The consequences? Confused, stressed, frustrated children; extreme pressure on families; parent carers being unable to access work – a perfect storm of looming crises behind closed doors. It’s a shocking statistic to the layperson reading it. To parent carers, it likely sounds painfully familiar.
I can remember contacting a local mainstream holiday club when Taz was about 5, her sister was already booked to attend. I explained Taz’s level of need and what she’d need to have in place to access it (essentially a 1:1). They explained that this would mean that the £145 a week club would cost £445 a week. They seemed to think this would put me off and that we’d perhaps just drift away. I discussed this with my social care contact at our local authority who agreed to the provision within our direct payments package. I then emailed the club to say we’d secured funding and could they give me details so could let the LA know. They did not reply. I chased, got a brief reply asking for more details of her needs which I duly sent. They never replied. I knew we were too much trouble for them. I know this to be discrimination and perhaps if I’d chased and pushed they’d have eventually made it happen. But by that time I’d got the message. I would never put someone as wonderful as Taz somewhere where she was not wanted. They did not deserve the privilege of spending time with her.
The summer after this happened, Taz had settled in at her special school and I received a letter home inviting Taz to be part of the summer club that a charity run at the school for the first three weeks of the summer holidays. The cost? £45 a day. This awesome little charity is funded by some brilliant supporters and has worked hard to secure grants, meaning the club is heavily subsidised; the cost is currently just £55 a day. Families are able to use social care direct payments to cover the cost, if they choose to.
I was unsure at first. The club runs at the school site and part of me felt guilty for sending Taz back to ‘school’. I booked her in, nervous and not knowing what to expect. We had no choice, like many families with disabled children, we simply could not cope alone over the holiday. When the timetable of activities came home for that first summer club, I cried. I could not believe what I was reading. This wasn’t a typical summer club where I may have expected a bit of messy play and few crafts. There were trips to the zoo, the circus, trips to a trampoline park, artists coming in, theatre companies coming to stage puppet shows, T shirt tie dying, a water party, bouncy castle, the list goes on, and on. A million times better than that mainstream club that rejected us. Each summer the activities are wonderfully inventive and hugely ambitious. There’s a clear desire to excel for our children. As a parent of a severely disabled child, the feeling of knowing that there are a team of people thinking up the best summer club ever, especially for children like yours, is indescribable. What I can tell you is that it makes me well up every time I think about it.
The club was set up 20 years ago and the same manager runs it today. They don’t stop at summer clubs, they do a Saturday club, an after school club and a siblings group. I have recently had the privilege of becoming a Trustee of the club meaning I can see the inner workings. The energy and ambition that the team has astounds me. And it’s all for our children. That is a profoundly uplifting thought. The world, despite some valiant efforts in small pockets, is not the friendliest place for children like Taz. So the team at the club have created a world that is, and then some. Meanwhile, we, and many other families like us, get the respite we so desperately need.
Life-changing is a phrase that gets bandied about all over the place; but if I try to think about our lives without the beacon of the Saturday club and summer club, I stop myself. I genuinely do not know how we could manage without it.
This post is dedicated to the team at the club; in particular the core staff team whose drive and ambition is an inspiration. Thank you.
Life with a Livewire 