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.

Sunday, 13 October 2013

We knew she understood. But now we know she minds.

Like most parents of children with Rett syndrome, I guess, I spend a lot of my time telling people (friends, family, teachers, therapists, random members of the public) that Amy DOES understand what we say. She understands, but can't always show that she does. She understands more than you'd think. Everyone should talk to her - and about her - with that in mind.

It's all true. But sometimes I'm not very good at practising what I preach. Sometimes - don't all parents do this a bit with their children - I talk about her when she's right there. Ed and I find ourselves making arrangements for her day over her head. We talk to her as well, of course we do, but sometimes the over-the-head thing just happens.

One reason it happens is that we've been able to get away with it. While Amy gives us plenty of clues that she's fully aware of what's going on around her, one of the most challenging aspects of communicating with her is getting her to let us know what she'd like to do. She doesn't always respond much in any of the ways we know she can.

Today, though, what I was suggesting to Ed was a deviation from the Sunday morning norm. Every Sunday in living memory, Ed's taken the girls to our local farmers' market to buy food for lunch and the week ahead. It's just what they do, while I loaf around at home, listening to the radio and under-achieving. But today it was raining. A lot. We had friends coming over, and it was going to be a quicker-than-usual market trip. I said, why not just go there quickly with Abby and leave Amy here with me. She could do with spending time in her stander too. Amy's face instantly crumpled, and she cried proper sad tears. She was so upset she couldn't eat her breakfast.

I was at once mortified that I had so casually caused this upset, and delighted that she had reacted so clearly and unmistakeably. She likes going to the market with her dad and sister - who knew! She minds if she doesn't go. It was the best gift she could have given us today, this little insight. (Of course she went to the market, all wrapped up against the rain. And she didn't go in her stander, nope not today. And she had an extra glint in her eye that lasted til bedtime.)


  1. I love that any loves the market so much and that she let you know. So fun to see your stories over time

  2. I've been reading your blog for a while but this -I know exactly how this feels. Our daughter has autism and a brain malformation. It isn't always clear what she understands or cares about. But lately, like Amy she's been reacting in this way when somehow slighted. It is the greatest gift- she cares :) wonderful blog, I love reading it.

    1. Thank you for commenting - glad to know you're out there and reading! All the very best to you and your daughter x