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Living with Rett Syndrome: Eye gaze is a game-changer, except it’s not a game

Beth Johnsson

photo 2 300x225 Living with Rett Syndrome: Eye gaze is a game changer, except its not a gameMy husband is the technical mind in our house. He will happily mooch around Maplin or Currys for hours, become childishly excited over new apps, and find therapy in sorting through boxes of cables which, to me, appear entirely identical. I suspect this is not peculiar to our household alone.

I know several women who, like me, are bemused by their husband’s ability not only to be utterly absorbed by domestic cabling solutions, but to become truly animated when given the chance to discuss said cables with another human being. Only last week, my undisguised disinterest in the new system of complex technical connections in our house, was lamented as ‘boring’.

Yet, whilst I struggle to feign sincere excitement about the process, I have realised and concede that I am increasingly dependent on the outcome. Our reliance on technology seems to increase almost daily; every new thing we can do very quickly becomes a must do, a necessity, a ‘how did we live without this?’. And sometimes, before you know it, it’s even become a ‘been done’. The technical equivalent of the T-shirt: been there, done that, got the gizmo. What’s next?

Take the iPad for example: an innovative and liberating piece of technology with which doors were opened. We applied for and received funding for Hannah to use the iPad as a communication tool. Inevitably, her brothers were adept within weeks (one morning I was forced to ask the two-year-old how to do something. I swear, as he deftly swept the screen and then expertly navigated his way to the requested icon, he actually rolled his eyes).

Hannah’s deteriorating hand function and resulting frustration at not being able to make precise choices, made it less useful than we had hoped as a communication aid. But it remained invaluable as a mobile entertainment system, a tool in the ‘peaceful cup of tea’ work box. And then the iPhone arrived. Everything the iPad could do, but, as the two-year-old would say, a ‘tiny one’. The possibilities start growing.

Of course, my husband being the geek he is, several highly efficient technical devices operating individually in our household is not enough. No, they must all be connected wirelessly and operate as some kind of telepathic technical team. Since he knows how to do this, he does it, and though I yawn and roll my eyes as he talks me excitedly through the process, it is hard to deny how clever the result is.

The iPhone is connected to the iPad is connected to the TV is connected to some other crucial component I only ever refer to as ‘that black thing’ and suddenly, Hannah’s favourite music video is playing widescreen on the TV.  Suddenly, the music she loves comes instantly with moving images, familiar faces, hilarious dance moves. Suddenly, Hannah is off the sofa and dancing too. Technology triumphs. And if she can learn to recognize the symbol which belongs to the sound, what then? Well, then it gets really interesting…

Then comes eye gaze. For the uninitiated, eye gaze is exactly the same as a touch screen computer, with the minor exception that instead of touching the images on the screen, you look at them. It’s astonishing. After two brief and unfortunately timed trials previously, we began another two week trial with a device last week.

For two years, Hannah has been choosing, with her hands, one photo out of three, for basic decisions such as her breakfast cereal,  what book she would like to read, which activity to do next. She invariably pulls down one photo, but we have never progressed beyond three options, and since hand function is limited and random, the consciousness of the choice has been hard to ascertain.

Eye gaze trial, day one: within five minutes, Hannah has been promoted to a six icon screen. Six. And are her choices conscious? Yes. Yes, they are. I can’t even type it without crying. Hannah gets it. Of course (because this is Rett Syndrome, and there is no such thing as a single-edged sword) the tears are not only of joy and relief.

They are also of sadness, fear, guilt. What have we missed in not giving her access to this technology before now? Have we always underestimated her understanding? How much more is locked in? Does she know she’s trapped? The old paradox: longing for her to understand; fearing how much she might.

Both my husband and I cried those double-edged tears watching Hannah command the screen last week: choosing her favourite pop song, giggling when it played, staring down the ‘stop’ button when she’d heard enough. Hannah understands; it is our job, our challenge, to provide  the tools which allow us to understand her.

The challenge is only just beginning: we must convince others involved (those clutching defensively to the shoelaces of those clutching defiantly to the purse strings) that this is worth funding; we must ensure that Hannah’s teachers are willing and able to absorb the new technology into school life; we must learn the technology ourselves, crafting it to maximize its, and Hannah’s, potential; we must teach two small boys that this is not their toy!

We can do all those things, we will. The iPad, the iPhone, the networks, these things are not essential. Brilliant, useful, entertaining, but not essential. Eye gaze is a game changer. Except it’s not a game, it’s a life. As far as I’m concerned, it’s not optional. If Hannah couldn’t see, but some hugely expensive specs would bring her vision, it wouldn’t be questioned. If she couldn’t hear, but a rather pricey hearing aid would bring her sound, no one would quibble. Those decisions would be, as they say in the movies, slam dunks. So many of Hannah’s problems, frustrations, disabilities, relate to her inability to communicate. Eye gaze gives her a voice, a say in her own world; it gives her the chance to be Hannah. Slam dunk.

For more information about Rett Syndrome visit www.reverserett.org.uk

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