Friday, 8 November 2013

She CAN do it: eye gaze computers

Jessica has had a few trials now on eye gaze computers. The best way to explain this amazing concept is to imagine that you are using a computer, but instead of moving the cursor with your hand, you move it on the screen using your eyes. You can then "click" on something by holding your gaze on whatever you want to click on for a pre-determined length of time.

Jessica was amazing with this piece of equipment. I don't have any videos as I was just too stunned watching her to take any! Jessica showed that she thinks systematically and logically by how she approached the games and puzzles. She showed that she is strong-willed, understands instructions very clearly and has a sense of humour. I think I know Jessica quite well, but even I learnt so much about her, and what she is capable of in just a brief 30 minute session.


Just imagine if she had access to such a computer all the time...She could play games, use it to demonstrate her learning, experience some independence, control some of her environment, learn to communicate with us clearly - the list goes on and on. However, such technology does not come cheap. And while there are children in our borough who have been allocated eye-gaze computers, they are children who are very physically disabled, but don't have significant, or indeed any, learning difficulties. And no matter how much I say that Jessica is cognitively alert and able, or indeed her speech therapist does, it doesn't mean anything unless we can convince the budget-holders that she is able to use and benefit from such a device. And to be fair this is very reasonable. It is a  LOT of money to be allocated to one child.


However, this is where things get interesting. Rett Syndrome is relatively rare, and at best most professionals have only worked with a few girls with Rett Syndrome, if they have even heard of it at all. So I imagine most people end up Googling it. And most of the information around says that girls with Rett Syndrome have profound learning disabilities and are incapable of learning. But this is not necessarily true, as many parents of Rett girls have been saying for a long time. Girls with Rett Syndrome are trapped in their bodies, unable to express themselves
- they have no verbal voice, and limited physical ability, BUT what they do have is eye control, an irrepressible urge to be sociable and form relationships, and a definite ability to understand far more than they can easily express.

With the advent of technology such as eye-gaze computers, this is becoming more and more apparent, and the abilities of these girls are becoming clear. This is beginning to become more accepted, and articles are being published and research is being carried out.
Eye-gaze computers are the only way that these girls can access the world, learn and reach their potential.

We are therefore in a unique position when requesting this piece of equipment. Usually
, when requesting some level of support, equipment or service, you have to demonstrate how "bad" the child is, and why this resource is needed. We, in contrast, need to demonstrate how absolutely amazing Jessica is, and show that she is capable of using an eye-gaze computer to its maximum potential, and to show  just what a difference it could make to her life.  Wish us luck!!

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