Disability Tech Dad - an introduction

My name is Matthew and I am a blogger who uses the name Disability Tech Dad.  I write blogs about my son Macsen, his life and how technology is helping him to live his life and reach his potential.  

Macsen was born 3 years ago with a number of brain related conditions including 4 limb cerebral palsy, cortical visual impairment and epilepsy.  These conditions mean that he is unable to sit-up, hold his own head, control his limbs and his brain has trouble processing images.

As you can imagine dealing with these diagnoses was challenging at first, but my wife (Lisa, an amazing lady) and I are not the type of people who just sit back and complain.  We both set about researching how we can help.  Lisa, with her experience in public health, focused on learning about his conditions and treatment, but as a geek there was only one way I was going to look... 

I've always been interested in technology: as a child I loved computer games, I studied Information Systems at university and have worked in the IT industry for the last 13 years as a programmer and technical manager.  Strangely I've also crossed paths a number of times with education and disability.  Whilst at university I worked as a learning support assistant helping children with dyslexia and behavioural issues, I wrote educational games for dyslexic kids for my dissertation and my first IT customer was a paralysed man who controlled his computer with a head pointer and blow straw clicker.

With this experience behind me and the diagnosis spinning around in head I set about looking for options.  I knew that my son had intelligence, I could feel it and I could see it in his eyes.  Macsen and I have tried lots of cool stuff, we've learnt a lot and had some amazing results.  I use this blog to share our experiences and hopefully show how technology can change lives for children like Macsen!

EyeGaze: Not As Easy As It Looks

EyeGaze.  It's just as easy as looking at the screen, isn't it?  You've seen the YouTube videos from experienced Tobii users, you had an assessment which was amazing, so why when you get your own system isn't it that easy?

I've seen a number of Facebook posts and tweets from other families about their early experiences and they clearly had the same early problems as us. Macsen has now been using his Tobii for about a year and it seems a good time to share our experiences.

Give the right physical support

It took quite a while to get Macsen's physical support and seating right.  As you can see from our selection of photos and videos over the year we tried a number of options:

Each of these options worked at different times.  Supportive holding was used by our therapist during the trial.  This worked well on the day, but was difficult to replicate at home.  Comfortable seating was what we used mostly when we first got the system home.  This worked really well for around 3 months but as Macsen grew it stopped working and he stopped being engaged.  We then  tried lots of Flexibility options including different seating, screen sizes and screen locations; none of them really made a difference.  Finally we had a problem solving session with our physio and Hector from the Tobii team.  We found that with a stander providing high physical support Macsen had the confidence and support he needed.  It allowed him to engage his eyes and now he's now using his computer better than ever!

Expectations

A lot of people were involved in raising the funds for Macsen's system and we were all very excited about sharing his experiences.  I also spent a lot of time investigating the possibilities and watched many videos of experienced users on YouTube.  Also our first assessment Macsen was amazing and had astonishing results, so as you can imagine I had very high expectations of our first session with our own machine.

Our first session and many after that one did not live up to this expectation.. I  retrospect I know that it takes a while to get to know a new technology and how to use it best.  Also I now know that the YouTube videos do not show the full story.  From the outside I'm sure people think that Macsen's journey has been smooth, but I know that I've thrown away 5 times more video thatn I've uploaded to YouTube!

I've tried to summarise in a graphic that shows the difference between what you were sold, expected and experienced. 

The key message in this graph is that our initial feelings and experiences were negative.  But I know that we will end up achieving and feeling better than we could have ever hoped!  With this in mind I have 3 recommendations for new eye gaze parents:

* Prepare - Try the system yourself while your child is sleeping.  Get used to the apps and navigation and even use the eye gaze yourself.

* Relax - If something doesn't work: don't worry, move onto something else and come back later.

* Take your time - Build up gradually and don't try to run before you walk (take a look at the learning curve http://www.tobii.com/en/assistive-technology/global/education/eye-gaze-learning-curve/)

If you have problems

Finally I want to remind all parents that you must ask for help!  Any problems you are experiencing have been experienced by someone else before.  Remember that your reseller wants you to be successful, so do not be afraid to ask for their help!  Also there is a very positive, friendly and responsive community in the UK Tobii Facebook group: https://www.facebook.com/groups/tobiiuk/ 

Finally finally please remember that you will get there!  You and your family will be experts and it will happen quicker than you realise!!!!!

Finally finally finally if your windows control isn't working then double click this icon: