If you had told me 6 years ago that my daughter may have to learn to communicate with us using an Eye Gaze Computer, I would have been devastated. Yet now this looks like an actual possibility, I am ecstatic.
From early on, both myself and my husband have been sure that Jess understood most of what we said to her, and, given the opportunity and the ability, she could demonstrate this. For example, just after Jess was diagnosed, she would often choose the same bedtime book. The last page of the book contained pictures of lots of different animals at a party, and when we asked her where each animal was,she would either reach out with a hand, or lean forward and touch the correct animal with her nose. However, you have to give Jess extra time to respond, and you have to look for her response, as it may not always be obvious. This can mean that not everyone who meets her, believes that Jess is fully aware of her environment and what goes on around her.
However, last year I heard the amazing Susan Norwell speak at the Rett Education conference. She showed a communication technique using a low tech device which I was able to make at home. It was a flip chart with the alphabet on it, as well as YES and NO symbols.
The first time we used this, I showed her how to use it by spelling her name [Jess, not Jessica - I felt that may be asking too much!] I did the 'J' and the 'E', and then she did the 'S' and the second 'S' on her own! She already knew how to spell her name and just needed a way to express it.
Jess and I showed the Speech Therapist at her school how Jess could spell her name. She was amazed, and immediately put into motion what needed to be done to order Jess her own Eye Gaze Computer, as this provided her with enough evidence that Jess would be able to use it to it's full potential. Given how slowly everything in the public sector usually works, Jess hasn't yet got the computer, but we have been reassured that she will get it soon.
In the meantime, Jess' school have been doing lots of work with her, teaching her the letters of the alphabet, phonics, and spelling. She is doing so, so well. Every week we get a message home from school saying how well she is doing:
Every week the school are doing a different letter. Some of the sessions are with the Speech Therapist and some are with the teaching staff in her class. However, I think the sessions that Jess enjoys most are the ones where she works with children from the mainstream school that her school is attached to. The staff have created a little study group for Jess, where a group of children from the mainstream school next door to her school come and work with Jess, and spend time doing activities around whatever letter Jess is working on that week. The children understand how Jess communicates, and the staff say that she is even more motivated than normal in these sessions.
I have to say that two years ago when we were looking at schools for Jess, this is exactly what we wanted for Jess. A school that believes in her, and can see her potential, and will work to make sure she achieves this. And a school that gives her time and interaction with the children from the mainstream school- this was, and is, so important to us.
Jess is so amazing, she copes with so much, and yet thrives. We are so very proud of her.