Rett syndrome is a neurological disorder caused by a faulty gene that affects mainly girls. Our daughter Amy was diagnosed with it in June 2009, shortly before her second birthday. She also has congenital heart disease. This blog reflects my family's experience of Rett and my own reactions to it.

Friday, 15 June 2012

The day Amy asked for ice-cream

There are so many reasons why we want to help Amy communicate. We have a pretty good idea these days about what she likes, what she's interested in and what makes her happy, but we'd love it if she could just tell us. If we could ask her a question, and she could tell us the answer. Nothing fancy: I don't expect her to tell us the solution to the eurozone crisis, or discuss the complete works of Shakespeare. I just want to know more about the person she is, without having to guess or make assumptions about her that might not be quite right.

The good news is that she is making definite progress with communication. As well as increasing amounts of vocalisation, Amy's using her eyes more purposefully to tell us what she wants. They're making the most of this at school and beginning to use a PODD communication book, which she's interested in and seems to 'get'. But she doesn't always need a 'device', whether low-tech or high-tech, to help her talk to us. Sometimes it's all quite simple.

There was a day recently when we were all in our local park (one of those days before the sun stopped shining). Ed took Amy for a walk, and they returned with ice creams and big smiles. He said they'd been walking past one of those big ground-level signs in the shape of an ice cream cone - Amy had stared hard at it, then looked up at him. He asked, "Amy, would you like an ice cream?", and she beamed. So easy: she 'said' what she wanted; she was understood; she got it. It was the best ice cream ever.

It probably doesn't sound like much. But we're not looking for anything big - just little things that work. Ways for Amy to ask us for things like other children do. Parents usually want their kids to do less pestering for stuff: we want her to do more of it.

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