I’m sipping from a big mug of coffee, Royal Blood’s LP is blasting cobwebs from corners I didn’t know my house even had, and my children are somewhere off playing with lions. Life is good.
I suppose I should backtrack to the lions bit. They’re not actually playing with them. They’ve been packed off on a trip to a safari park, so what’s probably happening right at this moment is that my daughter is suffering mid-level anxiety over what to buy in the gift shop (which will turn into a full scale meltdown when she realises I forgot to give her any money this morning), and my son is laughing at baboon’s arses.
It’s Trip Day, the finalé of a four day church holiday playscheme. And, in a fit of utter selfishness, I decided not to take up the option of going with them, as some other, nicer, parents did. Nope. Amazingly, I somehow predicted that in the final few days of the six week-long summer holidays, I might feel the need for a bit of peace.
We’ve done OK, you know. On the plus side, it’s been sunny pretty much all summer, which has meant lots of picnics. My husband took some tactically-timed days off, providing park ranger duties when I needed to get on with freelance work. More importantly, Tesco have had Skinny Cow lollies (95 calories) on offer, and we’ve hardly seen a wasp. These last two plus points may sound inconsequential, but believe you me, the ready availability of my daughter’s favourite summer snack, and the lack of Jaspers, are Very Good Things.
We’ve managed, with a bit of luck, and a bigger bit of planning, to keep our PWS teenager and our non-PWS five year old entertained, with a few trips, a few parties, meeting up with friends old and new, a festival’s worth of film nights, and - let’s not skate over them - a fair few days of grand-scale boredom and bickering. Because, as important as it is to try to give your PWS child routine, structure, and meticulously-planned days, it isn't always possible. Sometimes you can't help it - you have to wing it. Like I did when I realised I was supposed to have sorted out fancy dress costumes for the kids for the next day at holiday club. On the theme of 'inventions'. A quick trip to Asda for some banana boxes, a roll of gaffer tape, some straws, and a print-out of the test card later, and voilà!(see photo above). Before you feel overly impressed with my creative parenting skills, bear in mind that my favourite part of this Blue Peter-style activity was wiping the smiles from their faces by telling them this was the closest they’d come to getting TVs in their bedrooms. Is this wrong?
The summer holidays are in full swing, which means the necessary survival tactics have been employed in our household.
I’m not just talking about large supplies of gin to revive my shattered frame in the evenings. (But I’ve run out of ice! Damn!)
No, the masterplan for keeping a child with Prader-Willi Syndrome happy when school is out, is simple: keep ’em busy.
Structure to a day makes it easier for my daughter to stick to the order and timing she accepts:
breakfast → morning snack → dinner → afternoon snack → tea → hot chocolate → bed (By the way, dinner is sandwiches and tea is the main meal in our house. I read an article recently asking celebrities what they called their meals. It then explained how having 'tea' indicates that you're working class, northern, or something else I can't remember because I was so bored by this point I gouged my eyes out with a Biro). Anyway, as I was saying: breakfast → morning snack → dinner → afternoon snack → tea → hot chocolate → bed
And in between each of these there needs to be an activity. In this way, the day is filled. School, and its rigid timetables are ideal for this. Holidays, and their fluid, changeable plans, aren’t. Vagueness isn’t acceptable. We need to be a few steps ahead of the question: “What are we doing today?” And it really is best if once you have made plans, you DO NOT DEVIATE from them.
We’ve joined the time-consuming library reading scheme, we’ve visited friends and family, we’ve fattened up some already chubby ducks, we’ve explored a range of parks in the sunshine, and we’ve dusted off some board games when it’s rained.
And this week, for four days, she’s out, making cardboard Olympic torches and playing mini-golf and singing and dancing and having fun at the local church’s holiday club, run by a load of rather lovely, cheerful and enthusiastic people. I have the feeling my daughter and I might be having a few awkward conversations about religion at the end of a week of frankly shameless brainwashing, but hey, if The Moonies had been running a camp that would have kept her smiling and entertained for a week, I’d have considered that, too.
Have you any idea of the peace and tranquility of four whole days of respite, where my daughter is looked after brilliantly, and my day is mine, all mine, to enjoy and luxuriate it?
No. Neither have I. *wrings out swimming costume, as my son yells in my ear: “Can we go to the pool again tomorrow, Mummy, please? PLEASE?”*
Video is Ben Folds Five - Don't Change Your Plans (Live)
