An eye-gaze device gave my late daughter a voice
The technology enabled Cammy to communicate and be heard
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On Jan. 3, 2012 — my husband’s birthday — our late daughter, Cammy, received her voice.
It wasn’t a voice in the traditional sense, as it didn’t come from her mouth or vocal cords. Rather, it came from a computer — a technology so advanced it felt almost unreal. But when Cammy, then just shy of 3 years old, used that device to wish her dad a happy birthday, it was unmistakably her voice. And in that moment, everything changed.
For months, she had been trialing different communication devices. Through our state’s Early Intervention Program, she was approved for an augmentative and alternative communication device that cost $18,000. On that January day in 2012, Cammy was finally able to do something many families take for granted: say “happy birthday.” Hearing those words, her words, spoken through a device was nothing short of miraculous.
When a child is nonverbal or has limited verbal language, a careful trial process begins to determine the most appropriate communication system for them. Some children thrive with low-tech options, such as picture cards. Others use iPads equipped with customized communication programs. Cammy, however, needed something far more advanced.
Because of her Rett syndrome, Cammy was unable to speak or use her hands. Pressing buttons on an iPad wasn’t a reliable or accessible option for her. What she needed was an eye-gaze device.
This device is essentially a computer screen that tracks eye movement. When the user looks at a picture or word for a specific amount of time, the device selects it and speaks it aloud. At first, we focused on helping Cammy feel successful and confident. We played simple, fun games and watched as she smiled and giggled, realizing she had power. She could communicate. She could be heard. She could “talk” with her eyes.
With the support of two private assistive technology specialists, her school-based speech-language pathologist, and countless hours of work at home, Cammy became remarkably skilled at using her device. Watching her face light up as she strung together two, three, even four words or phrases was electric. Hearing her requests, her demands, her thoughts — it was absolutely incredible.
We always knew Cammy was smart. The eye-gaze device gave her a way to show the world.
In the years that followed, staff members shared photos and stories of Cammy’s words at school — what she said in class, what she chose during activities, the opinions she expressed. Each story was a reminder of something profoundly important: Communication is a human right. And when given the right tools, even the quietest voices can speak volumes.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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