Eye Gaze Therapy Gives Voice to Non-Verbal Patients at Cook Children's

Fort Worth, Texas - Communication is often expressed through spoken language or movement, but for children with non-verbal tendencies, it’s all in their eye gaze.

Augmentative and alternative communication (AAC) allows non-verbal children and adults the opportunity to learn how to communicate through a speech generating device (SGD). The device, similar in shape and size to a tablet, can be mounted to a wheelchair or desk, and tracks the movement of their eyes to choose preset pictures, words and phrases, depending on skill level.

Many children who are non-verbal experience frustration and behavioral issues due to the inability to express themselves to others. AAC focused therapy has the ability relieve the tremendous frustration that often accompanies lack of communication. Therapy sessions often include games to help patients learn how to utilize their full field of vision and learn how operate the device independently.

“If you’ve had any experience not being able to communicate, even for a short-term, it’s very frustrating when people don’t understand you,” Speech/Language Pathologist at Cook Children’s Rehab Center Carol Edley said. “We’re trying to get them to be independent, intentional communicators, and not be placed in the role of a responder.”

Eleven-year-old Willy struggled with speech his entire life until his mother, Carla Cowdrey, learned about AAC therapy, and knew Willy would thrive with the opportunity to finally speak.

“I really had a feeling Willy could communicate, and this was the way he was going to do it,” Carla said. “And it turns out, it worked.”

Willy has learned numerous words such as go, play, help, mom and recently said “she look”, referring to Carol on the computer monitor, during a telemedicine visit. His word choices are described as a one to two-step process, depending on his choice, and his mom is hopeful for longer phrases in the future.

More recently, Willy has begun using short phrases to ask questions.

“When you start having the child demonstrate what they are thinking, in a manner where they are understood, for lack of a better term, it just makes the family happy,” Carol said. “All of a sudden this child is something more than they thought he or she could be.”

For Marisa Sanchez, AAC therapy has allowed her to hear her daughter Isabella’s first words at six years old, including the word every mother wants to hear: mom.

“Going into this journey six years ago, and not being able to have your six-year-old communicate with you, it’s hard,” Marisa said. “Hearing Isabella say mom for the first time is something I’ll never forget.”

Isabella knew four words on her device in February 2020, and now has access to 28 words to grow her vocabulary.

“We’ve increased the number of buttons presented to give her more language to choose from,” Isabella’s speech language pathologist Theresa Jones said. “She’s recently started using words like “papa”, “go… home”, “go”, “put” and “stop”. This is in addition of her using [the word] mom. Dad got to see her use “papa” for the first time via FaceTime since we only allow one parent with a patient at a time due to COVID-19.”

Edley estimates 30% to 50% of the eye gaze therapy patients have moved to telemedicine in the wake of COVID-19. The change in therapy delivery has given families the opportunity to learn how to adapt when glitches and other life moments occur.

“For the kids, it can be difficult to shift eye gaze from their device to the computer screen that may have a book or some other language activity. But that is life and they would have had to learn to shift attention in busier environments to talk.”

Although COVID-19 has shifted routines and therapies, the Cook Children’s speech pathology team has still been able to work with the AAC SGD vendor to supply the devices for patients and families to continue working on speech at home.

“Excitedly, we gave out a rental device with eye gaze yesterday. She hasn’t had the chance to practice these last two to three months,” Carol said. “It was exciting to see the little girl's reaction. With her, her mother and I have found low tech ways to train her eye gaze. The real thing is so much better.”

AAC eye gaze therapy has given parents hope, and their children, like Isabella and Willy, a voice.