Monday, 29 October 2012


There’s something I often say to my daughter.

I say it when she can’t grasp why her brother isn’t interested in watching the 1993 TV movie version of Heidi with her. Or why her cousins enjoy running round a muddy field doing cross country. Or how not everyone likes chilli pickled onions.

It’s a simple phrase, trite even: “Everyone is different.”

I use it when she compares herself to others. When she was at mainstream school and started worrying how her classmates were on higher reading levels than she was. When she asks me if she’ll have periods. When she thinks my taste in music is “rubbish”. When she wonders why she talks more than an autistic boy in her class, or why she’ll never have children.

I’m reinforcing the message that being different is OK. Having Prader-Willi Syndrome means she isn’t the same as her cousins or my friends’ kids, but then why would she be?

And when I talk about difference, I take care to include PWS. Because as much as there are certain issues that always loom large with her syndrome, everyone with Prader-Willi is also different from eachother.

It was explained to me once in a very effective way: the ‘symptoms’ or ‘characteristics’ of PWS are all lined up like a graphic equaliser. To anyone who is annoyingly young, this was a row of sliders you used to get on hi-fi systems, each one used to adjust certain frequencies in the sound you were hearing (eg to whomp the bass up enough to make your heart thump). 

With PWS, this switch is marked hunger, this one learning disability, this one speech, this one mobility, this one social skills, this one skin-picking, this one stubbornness, this one emotional maturity, and so on. Just like a graphic equaliser, the levels can be set at maximum, minimum, or somewhere in the middle. Some of them are stuck, and no amount of WD40 will budge them. Some of them you can nudge up or down slightly with a bit of effort. One thing is certain: although people with PWS to a large extent share many of the same characteristics, these can vary wildly because their frequency sliders aren’t lined up in the same way.

Everyone is different.

Video is R.E.M. - What's The Frequency, Kenneth?

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