Tuesday, 14 August 2012


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)

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