The long summer holidays are fast approaching, and the conversation between parents at my oldest son’s (mainstream) primary school is all about what we are going to do with our children over the summer. Which holiday camps is everyone going to – football or dodgeball? When is everyone away – and more importantly, when are they back?! Who is around to book up some play date swaps? It’s good fun and while the prospect of six school-free weeks is daunting, we are all (I think!) also looking forward to slightly more relaxed time with our children, and a break from the school run.
The conversation is not so different at my younger son’s school – a primary school for children with severe, profound and multiple learning difficulties and/or an autistic spectrum disorder. Which play schemes are running over the holidays? Shall we book in some dates to all meet up? Who is going away, and where – any good tips for places to take children with disabilities? And is anyone around for a coffee / stiff drink before the end of term?
But while the conversations are similar, summer holidays for families of children with disabilities pose a specific set of difficulties. To start with, the summer camps and play schemes for disabled children are great, but can generally only offer children a limited number of days. In our borough, the council-run play scheme aims to offer all children eight days over the holidays, which are gratefully accepted – but eight days out of thirty leaves quite a few days left to fill. For working parents, this can be a nightmare, and they are left trying to find alternative play schemes, which are limited, will again only offer a limited number of days per child and can be a long drive away.
We have accepted four days at a play scheme for Toby, who is six and has a diagnosis of global developmental delay with some autistic tendencies. For the other twenty-two days, I have been trying to make some plans. Going out on day trips is difficult, because Toby has a tendency to run away – and he is an extremely fast runner. So trying to keep an eye on my older son (age 8), my younger daughter (age 13 months and crawling) and a Houdini-like 6-year-old is nigh-on impossible anywhere where there is a crowd. The best places to visit would be the sort of enclosed play cafes that exist for 0-5 year olds, but they wouldn’t be impressed if I arrived with an 8-year-old and a tall, destructive 6-year-old in tow. So our days out will generally be to the special needs adventure parks which offer calm environments within secure fences. Thank goodness they exist – but the one closest to us is a good hour’s drive away, so not somewhere to visit every day.
Meeting up with friends is lovely, but it’s usually a bit hit-or-miss as to how the meet-ups will go. Toby has a severe sensory processing disorder, which means he can become extremely upset if he hears any sort of mechanical noise or enters a busy, crowded, or sometimes just different environment. In the past he routinely screamed whenever we went to anyone else’s house, although this has (thankfully) improved in the last year or so. Nonetheless he is unpredictable, so we stick to visiting very much loved, accepting friends, who – if Toby gets distressed – will stick CBeebies on the TV, offer Toby a biscuit and let chill out until he feels better.
Home is a haven for Toby, so much of the holidays will be spent pottering around in the garden, Toby playing on the trampoline or swing. And for two weeks, we are going on holiday. Hooray! I hope that this year, we have got it right. Two years ago, we went to an all-inclusive hotel in Majorca. It was great, but as with everything else, not straightforward for the family of a disabled child. For one thing, kids’ clubs aren’t an option for us – children need to be potty trained, able to join in activities, and minus a strong tendency to run straight out of the room and into the nearest pool. So while other parents packed their children off to the kids’ club and went to relax by the pool, my husband and I took it in turns to take Toby off to the bus stop and spend the morning riding around town on the local buses – one of Toby’s all-time favourite things to do. Then evenings were spent with one of us chasing Toby around the restaurant, then the hotel grounds, while the other ate / watched the entertainment. It was a fun holiday, but perhaps needed some tweaking.
Last year, we decided to stay at a Eurocamp caravan in France, with the idea that at least we could keep Toby in a safe, secure environment during mealtimes and in the evenings. This was successful, apart from the fact that we realised Toby could escape out of the open windows, so we had to keep them shut at all times, even in the 35 degree heat. So this year, it’s a Eurocamp caravan holiday – with air conditioning. It’s got a lot of water slides, which should keep Toby happy and mean less rides on local buses – but because we can’t let Toby out of our sight in case he escapes, whenever he goes on a water slide, we need to go on a water slide too. So we are likely to emerge fitter, if slightly sick from all those waterslides.
So – am I looking forward to the holidays? Overall, the answer is yes; as with my older son, while I’m feeling a little daunted, I’m looking forward to a slightly more relaxed timetable and spending some time with Toby. Which reminds me – I need to check with the other school mums when they are away – and when they get back. And when we are meeting for that coffee…