Wednesday, 23 November 2011


My daughter ticks boxes.

In those bleak, early days when she diagnosed with Prader-Willi Syndrome, there was an element of relief in finally knowing what was wrong with her and being given a name for it.

But I didn't want her to become the label. My daughter is my daughter. She’s herself. She happens to have PWS, which plays a part in moulding her personality, but that’s all it is: a part.

And yet now, years down the line, I've learned a label can sometimes be useful. When it comes to Statements of Special Educational Needs, and forms for Disability Living Allowance and all the reams and reams of paperwork I find myself filling in, I console myself with this thought.

Because her behaviour and symptoms and characteristics and personality can be 'explained'. As individual as she is, as different as she is from another child with PWS, she fits the authorities' criteria. There is a name for what she has. It can be recorded in black and white. She can be categorised. And we can get down to the nitty gritty of working out the help and support she needs. It’s not always available, and sometimes we have a fight on our hands, but being able to tick those boxes gets us out of the starting blocks.

Video is Elbow - Jesus Is A Rochdale Girl. 
"And they found me full of myself
And bloody-minded will
And as yet a box to fill
And as yet a box to fill"

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