44. Summer struggles

Up with the lark, quick breakfast and out to play by 9am. Hide and seek, kerby, climbing trees and riding bikes. If you were lucky, a trip to the local swimming pool and a hot chocolate on the way out. The sun shone every day (at least, in my mind it did) and the long, light nights and no school the next day meant staying out later than usual. No one had a mobile phone, but parents didn’t worry – you came home when you were hungry, or when the street lights came on. Life was carefree –  simple, but good.

Now? Without a doubt, technology has taken over. X-boxes, Playstations, mobile phones etc mean childhood nowadays is remarkably different. When the sun shines however, they are still the same as we were – the bikes come out, the football, the water guns. Then the phone call to ask if they can stay at a friend’s for dinner, and then sometimes, “can I stay for a sleepover? Pleeeeease?” 

Options. My point here is options. For most children, they can choose to go out, hang out with friends at the park or the shopping mall, go swimming or to the cinema. If they’re lucky, or if a parent needs help with childcare, they might get to attend a sports or activity camp at the local leisure centre. And of course, there’s the even luckier ones who go on holiday. It might be a week at a caravan or a fortnight abroad, either way it’s a change of scene. A break from routine and a chance to make new friends or try out new things.

If you have a child with a disability, all of the above – and I mean all – becomes incredibly difficult, if not impossible. Our last holiday was 3 years ago – a week at Ribby Hall, just a 3 hour drive away, which was abandoned after 2 days. We came home because it wasn’t a holiday, it was an endurance. Our stress levels increased, and instead of recharging our batteries as a holiday should, we came home exhausted and stressed to the max. Not to mention the disappointment of explaining to our daughter, who sees her friends go abroad at least once a year, why we were returning home early. 

Our son can’t go out and play with friends, kick a ball about at the park, or have a spontaneous sleepover. He needs one to one support to do anything, from swimming to riding a special needs trike, and requires constant supervision for his own safety. His multiple and complex special needs mean just getting through the day in one piece is a major achievement. For those who don’t understand, autism doesn’t mean Rainman or The A-Word, at least not for us and many like us. It’s exhausting, it’s messy, it’s frightening, it’s all-consuming and it’s 24-7. That’s why we need services like the summer playscheme Tom has attended for the past 7 years, which has now been cancelled. 

Capability Scotland have run the holiday playscheme in Renfrewshire for many years. It’s funded by the council, and held in various schools through the area. Tom was allocated 2 days in the Easter holidays, and 7 days over the summer break. It’s not a lot -the 7 days are spread over a 2 week period, so that still leaves almost 5 weeks with no support – but it was a lifeline. It was a much-needed return to normality for children like Tom, who require that structure and routine. The bus would collect him just before 10am, take him to his school where he felt comfortable, and bring him home about 2.30pm. A short day, but those few hours made a massive difference to all of us. Tom could take part in whatever activities were planned each day, and I could spend some quality time with Alex, or catch up on housework or shopping, things most people take for granted.

We recently found out that this year’s playscheme is looking extremely unlikely. Capability Scotland have chosen not to renew their contract, and the council are apparently looking for an alternative provider, but that won’t be easy. They have known about this for months, yet failed to inform parents. While I appreciate that organising such a service must be incredibly complicated – the insurance and health and safety considerations must be vast – the impact on families will be huge also. Each year I dread the holidays more, as each year Tom becomes harder to cope with. I urge those concerned to act quickly to resolve the situation, or I fear those who depend on this crucial service will be put under such strain that the consequences may be disastrous. 

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