Thursday, 23 February 2017

Jess and her EyeGaze Device

So, I've not updated this blog for a while. My last post detailed how serious Jess's medical complications are/were, and there is a lot more I could say about this. And I will at some point,
BUT this blog post is about Jess's amazing communication over Christmas, which just blew me away and was a lovely end to what was a very difficult, challenging and emotional year.

Jess is very lucky to have her own eye gaze device, and a lot of support from school and her speech therapists. Add into that all the emphasis on communication in the Rett world at the moment, this makes for a very exciting time for us. However, Jess's progress, and how much we have been able to make the eye gaze a part of our everyday life, has been hindered by her poor health and multiple hospitals stays over the last 12 months, which made her achievements over Christmas even more special.

Firstly though, some background for those who are familiar with this world. When Jess initially was given the eye gaze device, she was using Grid 3 on her high tech eye gaze device. But low tech, she was completely immersed in  PODD at school -  with a PODD book, and her whole class were using PODD with it being continually modelled. In a perfect example of just how important modelling is (where someone is using/demostrating the system to talk to Jess as well as verbally speaking) once Jess had PODD put on her eye gaze device, she immediately knew how to use PODD and was straight away flying through the screens and navigating to things we didn't even know were in the system!

Over Christmas, Jess was relatively healthy and we spent a lot of time at home, where the eye gaze can be set up, which made it the ideal combination. We had the eye gaze device set up next to Jess's armchair, and had it on and available to her the majority of the time. She completely amazed us by using it spontaneously, in a timely manner, and completely in context. On occasion, the adults would be talking beween themselves, and we would have no idea that Jess was even listening until she suddenly would join in the conversation with the eye gaze! It was exactly what communication should be - being able to say what you want, when you want, to whom you want. Not just being able to make a choice from two options, or only being given one hour or less a day to say everything you want to say, when the moment you wanted to comment on has passed, or the person you want to say something to has gone.

So, here are some examples of things Jess said using her eye gaze device over Christmas:

We were talking about family coming to stay over Christmas

Again, more family coming to stay

Talking to Anna

Her answer when asked what she wanted to do!

Jess wasn't feeling well

We had just told Jess we would be visiting a friend the following day

A spontaneous question

We are not to sure what was upsetting her here, and the situation was such that we couldn't ask her too many direct questions to find out.

But she repeated this every time we deleted the initial screen message!

I think she was missing school!

Her answer when she was asked what she would like to do

We were talking about going for a walk!

Jess was watching TV (I thought!) and I was absentmindedly playing with some toy instruments when Jess suddenly said this!

The grown ups were talking about an item on the news about a plane crash the previous day - we didn't even know she was listening!

Here we were playing a game called Shopping. It's a memory game, each player has a shopping list and you take it in turns to turn the tiles over and find the items on your list. When you find the tile you need, you place it in your basket, and the first one to have found everything on their list wins.

Jess put cheese in her basket

She then used the eye gaze to say cheese!

Here, you can see that she was saying "have" and "have not" depending if the tile I picked up for her was on her shopping list. Then I asked her which tile she wanted me to turn over next, and she replied "can you please do it for me"!

For other Rett parents reading this, please be aware that Jess doesn't always communicate this well! She can be too tired, distracted, ill or just not interested. Or we can have technical problems (I very much have a love/hate relationship with this amazing piece of technology!). But for some reason, it just all came together over Christmas, and fell into place.

I am so proud of my gorgeous girl, and what she has achieved despite facing so many health issues. I will update soon about her medical management but we are really hoping for some stability now for 2017, so she can continue to develop her communication skills and generally carry on being amazing!