Sunday, 8 February 2015


My daughter was sitting in the other room, sharing out some freshly printed ‘change cards’ with her Prader-Willi Best Friend Forever (PWSBFF), who’d spent the night.

The sleepover had gone really well, and the two teenagers, who have peas-in-a-pod personalities (due in no small part to their having the same tiny missing piece of chromosome), were happy and content, having directed me via Google to search out and print off Topsy & Tim and Matilda The Musical images suitable for the pictorial content of their new cards.

A quick explanation: change cards are little cards you make and keep on your person, ready to present to your child when there is an unexpected change (something which people with PWS have a particular aversion to, and which can cause serious meltdowns). The idea is to have previously made a deal with them promising them a reward of some sort once they get a certain number of cards, so the positive makes a negative situation less negative, if you get my drift.* (*See the earlier blog post Change if this makes no sense to you. Although I’m not promising reading that is any less confusing).

The system works ok - as long as from the start you make it clear that they can’t plague you for cards, and that they only get the cards for proper, big-scale unexpected changes, like parties being cancelled, cars breaking down, or any some such serious shit.

Occasionally, my daughter does try it on, though.

PWSBFF ran back into the room and up to me as I sat cutting out a second sheet of cards.

“She says she needs a card!”
“What for?”
“Well, she says the lady who is Topsy and Tim’s mum is in Eastenders too, and she just died in that, so that’s a really big unexpected change.”

Nice try girls, nice try.

Song is Allen Toussaint - Am I Expecting Too Much?

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