It was a few days before Kathy Doyle Farless’ son’s birthday and there was planning to be done for the celebration.
As she chatted with her husband, Keith, about the menu in their Wakefield home, they heard the electronic voice of her daughter’s communication device in the next room repeating, “Happy birthday.”
Her daughter, Caitlin, 16, has cerebral palsy, and was using her new Tobii Dynavox device, a computer program that calibrates Farless’ eyes and uses a laser to detect her pupils’ movements. After four months, she is learning to direct the computer’s cursor with her pupils, by looking at the screen in front of her.
Caitlin is a student at Meeting Street school in Providence. Her family has spent years trying to find a communication system that worked, given her motor impairments.
Cerebral palsy is caused by injuries in birth and range in severity with each individual. Caitlin’s case is severe, and she struggles with motor skills. Her tongue, lips and mouth suffered from the injury, and her ability to communicate is impaired. The ability to track eyes has been around for years but the technology is now more accessible to people with disabilities, Keith said.
Carol Matthews, speech language pathologist at Meeting Street has worked with Caitlin for three years and introduced the technology to her. The girl’s response was immediate and it has opened a whole new world, Matthews said.
“Up until that time, we didn’t know how much she comprehended or what she had to say,” Matthews said. “We had the suspicion she had a lot to say, but that she didn’t have a way to put it out there.”
“I had always thought she could understand, and anticipated things from things that she had enjoyed through movies, books and music,” Kathy said. “With [this device] teachers and therapists understand very quickly that she does have preferences. For years now we haven’t known what it is she likes or whether something hurts or if she’s cold.”
Kathy and Keith said they contemplated a risky back surgery for their daughter that would allow her to stand up straight, so the Tobii Eye Gaze could detect her pupils. They took that risk, and said they never consider their doubts now.
The program also has the ability to access the internet and Facebook, can be used to activate a remote control, and to access educational applications and other entertainment features.
It took the family two years to convince their insurance company Caitlin was capable of learning the technology and to cover the cost of the expensive device. Before that time, even Kathy was skeptical. She thought it seemed complicated and she was not convinced Caitlin would respond to it. Her opinion changed when Matthews uploaded photos of the family and Caitlin was able to pick out Kathy’s photo when she was asked to locate her mom.
“That was so big for me. We have a lot of caregivers and nurses and I always wondered whether or not she really knew who I was,” which made fighting for the device worthwhile, Kathy said.
“We immediately knew that Caitlin is highly motivated to communicate to other people and had a lot to say, but would experience frustration and started to give up [trying to communicate] after a while,” Matthews said.
Once the insurance company approved the device in January, Caitlin was trained to understand cause and effect, starting with games and jokes. Matthews recalled the “light bulb” moment for Caitlin, when she was able to activate a video herself.
Matthews said Caitlin went from being passive, with little movement, to sitting up straight and engaging with the program. Now, she is a big fan of Justin Bieber, the Big Bang Theory, telling jokes and playing the drums on her computer. She laughs often. Her parents are grateful they now know what their daughter wants to do.
“Mainly for her, [the device] is an emotional and social connection. There’s several girls now who have this [device] and they’re able to interact with each other and make comments that might be typical of a teenager,” Matthews said. About eight students at her school use the same technology.
Although Caitlin is improving her skills through the technology, Kathy said it is strenuous for her to use it for more than 10 minutes at a time. At school, her teachers are slowly increasing the time, hoping to build her endurance to one or two hours a day.
“In the very beginning when she was first born, I wanted her to walk and talk and I brought her to every specialist I could think of; we’re at the point now that we’re pleased that she’s smiling and she’s happy,” Kathy said.
As Caitlin continues to respond positively to her new technology, her family is hopeful they will keep experiencing little surprises as Caitlin communicates with them.