Sunday, 11 August 2013


We need to talk about change.

I don't mean the kind of loose change you find down the back of the sofa, although now that I've mentioned it, I reckon there's enough down there to buy a cheap bottle of rosé with...

No, I'm referring to the unexpected changes that happen in day-to-day life. Changes that are usually only a minor irritation to most people but which can be Very Alarming Indeed to my daughter.

It's physical, I swear. The panic starts in her belly and rises, in what I can vicariously feel is a skin-tightening, cheek-blushing, scalp-tingling, jangle of adrenalin. Sometimes I can talk her down, sometimes I really, really can’t (see previous blog entry: Meltdown).

People with Prader-Willi Syndrome find dealing with unexpected changes very difficult. Anyone with a PWS child will tell you that structured days where things run to plan are easy peasy lemon squeezy. When the running order is switched, and stuff happens to cause you to deviate from the advertised programme, days become eyeball-poppingly stressful.

Let me give you an example: coming back from our holiday on the Isle of Wight, we were booked onto the 11.30am ferry, but we were a little bit early, so a nice Wightlink fellow told us to drive the car into Lane 1. He smiled, unaware of the horror he would potentially unleash with his next sentence: “There’s a chance we can get you on the 11 o’clock one.”

First of all, it was a change. An unexpected change. I knew what was going through my daughter’s mind: “But HOW? WHY? We’ve got a ticket for the 11.30am ferry, so that’s the ferry we’re going on! How could be catch the 11am one, when our ticket DOESN’T SAY SO!” The high changiness factor was exacerbated by the vagueness of his phrasing - “there’s a chance” means “might or might not”, and this, to a PWS person, is an enormously unsettling concept.

My girl began to panic. Her voice started rising, questions began to pour out, and her emotions threatened to break free. Luckily, we managed to lasso her concern and tether it with a bit of nifty explaining and distraction, in particular the trump card of pointing out that it was time for her morning snack.

Well now, we’re planning to change the way we deal with change. There was a talk about behaviour at the International Prader-Willi Syndrome Organisation Conference last month, where the idea of ‘change cards’ were explained.

The concept is simple. You get busy with your Pritt Stick, sticky-backed plastic, felt tips, computer printer, or whatever, and make some little cards, decorated with your child’s favourite TV or cartoon character. You include the word CHANGE. And you keep them about your person, obviously being prepared to soak up the embarrassment of accidentally trying to claim nectar points at the garage with a pink Hello Kitty CHANGE card.

When an unexpected change happens, you acknowledge it, you say to your PWS person that there has been a change that no-one knew would happen, and you give them a card. Here’s the clever bit: you’ve previously agreed with your child that if they get three (or four or five or whatever number you choose) change cards in a week, then they get a reward (such as extra ‘choose time’ at school, a magazine, or a pack of collectable wotsits in their latest endless collection of oojamaflips). So a change is still alarming, unsettling, upsetting, balance-bothering. But it has an upside. The presentation of a CHANGE card is actually a good thing coming out of a bad thing.

Now where are my scissors?

Video is David Bowie - Changes. 

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