My son, Thomas, was diagnosed with severe brain conditions (Polymicrogyria and Microcephally) soon after birth. We were told to expect he was “highly likely to have significant problems”. I’m not sure when I really knew I’d never hear him speak but certainly by the time he was three years old, I knew he wouldn’t, and he was not going to be capable of anything like signing. Developmentally he’s around three months old in all aspects, physical and cognitive. He also has Cerebral (or Cortical) Visual Impairment (known as CVI) as part of his conditions. That means that his brain cannot adequately process what his eyes see. Thomas’ communication is therefore pretty much limited to crying, laughing (which he does a lot of) and smiling (which he does even more of).

In November 2014 I visited Kidz Up North. When I had a glance around the Smartbox stand I didn’t see there’d be anything suitable for Thomas. They provide assistive technology and I saw things like tablets, where the user would touch the screen to indicate choices, absolutely way above Thomas’ capability, so I was going to move on. However, someone talked to me and I told them about Thomas. This has now led to Thomas having trials of their eye gaze technology. When they advised they had this technology I didn’t have high hopes for Thomas, given his level of understanding and his visual impairment, but as they offered an assessment then I thought it worth looking into.

Not only did Smartbox determine that it was worth pursuing a trial, but also the relevant NHS departments came on board. The Speech and Language Therapist got the Assistive Technology Department involved and they’ve loaned Thomas other equipment such as head switches. I often wonder if they’d have become involved had it not been for the Smartbox involvement and eye gaze assessment. Thomas had a loan of the eye gaze equipment for two weeks then a further two weeks when a new camera became available. What he achieved amazed me. Yes, to anyone else it was minor, but for Thomas it was huge. He seemed to grasp the cause and effect and he was able to focus and activate things on the screen. One of the most advanced activities he did was to fire custard pies at individual faces on the screen. A circle with a face in it would appear and when he looked at it a custard pie would splat on it. A new face would then appear elsewhere, and so on. Never in my wildest dreams did I imagine Thomas would be capable of that but he had a few goes where he went from one face to the other with little delay, showing his understanding and ability.

Right now we’re waiting to see if this can be taken further and if Thomas can be supplied with this equipment. Again, something I never expected, there is a possibility of NHS funding, although that’s not clear at the moment as we wait for a new department to see Thomas. I have to have hope though. If Thomas can have this equipment soon, aged five, and work on it in the coming years, who knows what he might achieve. A few months ago I read about a boy who got this equipment at 16 years of age. His family didn’t know what he could understand and he had very limited communication. Now he uses eye gaze technology to “speak”. Just imagine if Thomas could one day do that. Maybe he won’t but we won’t know unless we try.

If you would like to know more about eye tracking technology head to the Tobii Dyna Vox website.

The author is a mother of two who has asked to remain anonymous.

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