Life changing. Those are two very big words that I am guilty of using for things like a great concealer, the one that covers those post baby bags under the eyes perfectly, a cannot put down book that makes you rethink everything you thought you knew. Things that may have changed my life in a small way for the better but not necessarily in a huge way. After all there will be another book, there will be another concealer. It’s rare that something is truly and definitively life changing for the good.
A couple of months ago Lyla tried eye gaze technology for the first time. Eye gaze is technology that tracks eye movement and enables users to operate software with their eyes. Kind of like how a nintendo wii tracks your movement to allow you to play tennis, except this tracks eye movement to allow the user to select words and create sentences on alternative communication software, to play games, to control their environment, to write emails, to change the tv channel over, to take photos, It sounds like something from a sci-fi tv show right? Well this is real and here now for people like Lyla, who have so much to say and no way to communicate it easily, autonomously and in real time.
We currently use an partner assisted, alternative communication system with Lyla called PODD (Pragmatic Organisational Dynamic Display) and it is bloody awesome however it is totally reliant on the person communicating with Lyla to know how the system works and to actually get her book when they think she has something to say rather than guessing and recognising her head movements to say yes and no, which aren’t always the clearest.
Imagine how frustrating it would be if you wanted a banana milkshake and you were desperately trying to tell your friend but they kept asking if you wanted strawberry or chocolate. How annoying would that be? PODD allows Lyla to lead the conversation and to direct the partner to what it is she is trying to say rather than only having the option of yes and no answers to questions directed by the communication partner. Even worse than this imagine having something to say and no one realising or having the time to go get your book and figure out what it is.
For a smart cookie like Lyla this must be a constant source of annoyance but most of the time she is very patient, until she isn’t and then who can blame her for the occasional meltdown. Now imagine having this PODD system on a tablet with an eye gaze system and a voice generating device. Imagine having the autonomy finally to speak for yourself, whenever you wanted to instead of relying on other people all the time. Life. Changing.
She took to the eye gaze games like a duck to water and very quickly got bored of the ‘look at people’s faces and they get splatted by cream pies’ game and wanted to move onto something more interesting. Think about how quickly kids pick up how to use an iPad and thats what Lyla was like with the eye gaze. It was incredible. Even though we always talk about Lyla being cognitively a 3.5 year old, I don’t think her professionals, or us for that matter, really realised exactly how true this is until we started watching her with the eye gaze that day and playing with the iPad at home, which has become a new favourite pastime for her.
The eye gaze technology is likely to be provided by our education authority for Lyla in the near future, hopefully the funding process will be plain sailing although you never know but rest assured we will get this technology for her one way or another, come hell or high water.
I am so grateful that Lyla was born into this day and age where we have access to technology which will allow her to get so much more out of her life. It will allow her to explore her talents and follow her dreams in ways that she would never have been able to in the past, it is literally Life Changing. I can’t wait to hear more about what she thinks and feels. She is a very emotional communicator, she demonstrates how she feels about things constantly with her facial expressions but to hear her actually articulate this in her own words would be mind-blowingly awesome.
Lyla comes from a family who love to talk, on both sides, the Irish and Scottish blood that flows through her has so many stories to tell, opinions to share, passionate arguments to have and I can’t wait to hear all of them.