A note to Rett grandparents: how you can support your kids

Posted in Personal

I had an email from a reader once saying that her granddaughter had been diagnosed with Rett. She asked me how she could support her daughter at this difficult time. It came back to me as I was doing the dishes this morning {that’s usually when blog post ideas hit me} and so here I am telling you grandparents what your kids need most when their daughter is diagnosed with Rett.

It can be very easy for me to think and act like Rett Syndrome happened to me. I could play the martyr and get people’s sympathy, but you know what? Rett Syndrome didn’t happen to me. It happened to Grace. No matter how hard I take this diagnosis, no matter how much it screwed up my life, my plans, my dreams…it did so even more to Grace. Immeasurably more.

So what I said to the grandmother was this: the best thing you can do for your daughter is remember that this didn’t happen to you. It happened to your granddaughter. It’s your job to support you daughter as she supports her daughter and if you need to vent about how hard it is for you, do it to someone else. Your daughter can’t support you right now.

I think what we all need to remember is that this happened to our daughters and not to us. Yes, Rett takes a toll on us and our families. But it’s nowhere near as much a toll as it’s taken on our little girls.

Tobii Eye Gaze Trial

Posted in Gadgets we've found useful, Photos & Videos, Therapy, Treatment & Research

Grace tested a Tobii eye tracking computer today which was so amazing. I was emotional before she even began. The computer precisely tracks each eye independently. The cursor moves with the eyes and when Grace dwelled on the item she was looking at for a certain number of seconds, it acted as a click on that thing.

We did a few things in this test which lasted about an hour. You’ll see in the video below that as she watched the singers on the screen, the cursor moves and shows us what she was looking at. The lady was able to say “yes, she has pink shoes!” or “ooh look at that blonde hair” or “those are the lights” depending on what she was looking at. Then she needed to look at the red button on the bottom right in order to make the next song play.

So what’s the long term purpose of introducing technology such as this? Well at this young age, if she were to start using it, she would be learning that her eyes have the power to make things happen. And we can use that power to give her choices and as she grows, she can accomplish more and more through eye communication.

The most upsetting thing about this is that these computers cost over £10,000! The NHS doesn’t provide them. Which is rubbish considering the way they’ve been pushing the chidren’s bill of rights. The UN Children’s Bill of Rights is the first legally binding international instrument of its kind. It states {among other things} that children have “the right to freedom of expression; this right shall include freedom to seek, receive and impart information and ideas of all kinds, regardless of frontiers, either orally, in writing or in print, in the form of art, or through any other media of the child’s choice.” Article 23 states, “a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance and facilitate the child’s active participation in the community.”

Now as for whose responsibility it is to pay for those rights to be made available? I have no idea but I certainly know that we don’t have 10 grand kicking around!


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