A Mother’s Argument for Patient Self-Advocacy in Rett Syndrome Using an Eye-Tracking Communication Device
Kalika using her eye-tracking augmentative and alternative communication (AAC) device. Photo courtesy of the author.
I jerked awake at 1 AM to the sound of frenzied footsteps and insistent beeping in my five-year-old daughter Kalika’s hospital room. She lay in deep slumber, recovering from gastrostomy surgery. Two nurses hovered at the foot of her bed with deep frowns and voices betraying concern. Kalika’s blood pressure had plummeted alarmingly, and she appeared unresponsive.
After several minutes of prodding, she opened her eyes. The head nurse turned to me and said, “We need to see if she’s alert. Can you get her to respond on her device?”
I nodded and grabbed Kalika’s eye-tracking communication device. Holding the device over her, I asked her how much pain she felt. Kalika scanned the “Pain” page in her speech software and said: “Some pain.”
The nurse turned to me and said: “Can you ask her another question? Ask her how she feels.” I flipped to the “Feelings” page and asked, “How do you feel?” Kalika surveyed the screen and said: “Tired, tired.”
Satisfied that Kalika was in fact responding appropriately and consistently, the nurse said, “We’re good. Great job!”



