Saturday, 23 June 2012


“It’s because I’ve got Prader-Willi Syndrome!” my daughter yelled at her classmate, slamming her hand down on the table.

Her teacher met me at the end of school, describing how my normally happy girl had had a meltdown in the classroom.

It was one of those days when her needle got stuck and nothing could make it hop and jump onto the next groove.* (*For those of you who think vinyl is what your Gran’s got on her kitchen floor, this is a reference to LPs. Yes, I’m down with the kids, daddio.)

It isn't rare for my daughter to perseverate (obsess and repeat a phrase or behaviour over and over again). But it is rare for her to do it for very long periods at school, where normally a mix of distraction, patience and luck will see it out.

On this occasion, her thoughts had focused down to the narrowest of channels, and she had decided to repeat herself about repeating herself.

“I...I...I...know. I know. I don’t want to repeat things. You are. It’s because of my Prader-Willi. I’m not repeating things any more. I’m not saying it. You are. I’m going to stop. I’m stopping saying it again. I KNOW. I know. I’m not repeating myself. It’s because of my Prader-Willi. I know. I’m not repeating things any more...You are. I am. I’m not.”

It was an inner dialogue, racing around her brain, but of course it was being declaimed, very loudly, because inner dialogue is not something my daughter’s mind and mouth work together on.

After a morning of this, and no sign of it abating, her teachers were trying to distract her, and her classmates were telling her to stop saying stuff over and over again. Ryan got a blast of her infrequent temper and the table-slamming comment. I believe a pen or two may have been thrown. But, as the teacher explained, my daughter seemed to be angriest with herself.

Sometimes, she thinks about her syndrome. Sometimes she gets frustrated when she gets stuck in a thought or a behaviour and senses what she’s doing is odd or difficult for other people to deal with. Sometimes, but not often, she gets angry. And sometimes she says to me like she did after her meltdown day: “I wish I didn’t have Prader-Willi Syndrome”.

Of course, the next day things were fine. Like they usually are. 

Video is Stealers Wheel - Stuck In The Middle With You

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