Grace for Rett » Grace's Life with Rett Syndrome

Tobii Eye Gaze Trial

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!

Note: if you’re viewing on RSS feed or in your inbox and you don’t see the video below, click here to see it on the blog.


Sally-Ann Garrett - August 2, 2012 - 8:40 pm

Great work Nadine. And interesting ideas about Grace’s rights! Let me know if you plan on taking any action.

Emma Boyes - August 2, 2012 - 8:43 pm

GO Grace!!!! We are currently fundraising for one but have to work with our SLT and school to get them behind it, so they can help teach her with us….. like Grace, Holly at this early age its all about learning how to use it.
With the funding I am talking to the social work team and hoping to get some sort of help etc etc. Although I guess this may take some time! I think for us its convincing her SLT’s. I am booking in a demonstration at her school in the new term so hopefully we can go from there!
Good luck and it was lovely to see Grace doing so well at it.
xx

Mila - August 2, 2012 - 8:53 pm

LOVE THIS! She is so focused and smart. She knows what she wants, that’s why she was trying to explain with the stage characters, and the lack of her effort to continue getting more of them, I think. Two was enough. She is just not going to do everything that everyone requires of her. It was obvious that she LOVES music and what she can do with that! Until the machine is more affordable, one can just play that game with her and do ‘what she says’ with her eyes. She is OBVIOUSLY very humble, by the way she acts when she aces all the snowflakes. The way that this appears to me, is that she is very easy to read. The more I look at Gracie, the more I am thinking about getting involved with Rett girls. To me they are an open book.
As soon as I can I will try to contribute to getting this machine for her. They would need to add more and better games for learning for her. She is as smart as a whip!

Scott L Vannatter - August 2, 2012 - 9:42 pm

I was so very happy to see Grace interact with the computer screen. I am certain she was as happy inside as she showed outside at being able to do things.

I thought of Stephen Hawking throughout this video. I tried to imagine how much we as a society would have lost had he not been able to use the computer to talk and get his ideas across to people.

There will come a time when the world at large sees the need for this type of system in our schools as well as at the home for those needing it. The prices will come down. People will start creating better and better versions of this type of teaching so that it can be done at home by parents and can be affordable.

Unfortunately, that all takes time.
Good luck and let me know if I can do anything. I will add this post to my page of “Very Interesting Posts I have found”. Perhaps, someone will see it who can help more.
Scott

Janie Beaumont - August 2, 2012 - 9:42 pm

Of course she is smart… like her mommy.. why shouldn’t she be?

Every girl with rett syndrome should be given this device, the only problem is it is such a specialist field to work with our girls to ensure their potential, but what the heck, where there’s a will there is a way hey…….

Mila - August 2, 2012 - 10:04 pm

Wow..how can one be reminded of Stephen Hawkins by watching Gracie???? He was such a pervert in more ways than one. He openly HATED God and was pretty much a puppet to what he was told to say. I am not saying that he was not intelligent, but that’s all he was and that’s why his handicap was repulsive. Unlike Gracie who is everything opposite: smart, brave, honest and humble. And her handicap completely disappears for those that see the true beauty that she possess. Just because one is little and young, does not mean they don’t possess all the virtues of a full human.

Anna - August 3, 2012 - 7:23 am

I frequently visit your blog and love reading about Grace and seeing all her great photos! I’m actually a phd student (& OT) in Australia researching how girls & women with Rett syndrome communicate and I’m realllyyyy interested in the Tobii devices but unfortunately your video wouldn’t load on this computer … I’ll have to try again!!

Hector Minto - August 8, 2012 - 2:33 pm

Really nice attention from Grace to the task. Once someone has established screen contact like this, you are half way to meaningful interaction. The “cause and effect” is critical and Nadine seemed to be getting somewhere with that! The cost of AAC is of course a huge problem but schools can invest as a resource and many other children with other conditions get them. I agree with you on the human rights argument. Keep going….you’ll get there 🙂

admin - August 9, 2012 - 9:06 am

Wow Hector that’s really encouraging thank you so much!

Speak For Me « Life, Love & Lyricality - August 10, 2012 - 4:51 pm

[…] time and she will be able to tell you exactly what she thinks of being labelled this way. The second post explores the same issue. Elizabeth’s daughter Grace tested with eye-gaze and the experience […]

ann marie smith - August 14, 2012 - 11:08 am

wow amazing work grace and mummy we too are fundraising to get kyle his own mytobi he is six years old and has a rare condition called PMD i am his gran i think its awfull that the government wont do more to help they are failing our children it makes me so angry x

grammy - August 24, 2012 - 2:42 pm

Every blog brings me closer to Rett children and their families. My heart, mind and soul are touched by these incredible people.
I hope and pray that when they awaken we can all shout hallelujah.
Love to All, grammy

[…] may remember this video of the first (and only) time Grace has tried a Tobii eye gaze computer. These computers are super […]

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