Eventually, Dino was diagnosed with Leigh syndrome with mitochondrial myopathy. The disease can cause a variety of symptoms. For Dino, the primary concern is severe muscle weakness and related motor impairments, which make him reliant on a wheelchair and make it difficult for him to communicate. Leigh syndrome is an episodically regressive disease. That means, patients like Dino can be stable for long periods of time then suddenly begin experiencing new, or more severe, symptoms.
At first, Dino used an iPad to supplement his speech. When needed, he would type out what he wanted to say and people would read what he had written. That worked for a while, but as Dino matured, he had more complex things to say and his disease continued to progress.
Finding the right AAC system to meet each child’s needs
Through elementary and high school, Dino tried a number of different augmentative and alternative communication (AAC) systems to meet his changing communication and physical needs. “He didn’t want to accept some of the prior systems he used,” his mother says. “It was a huge adjustment for him to accept he needed to use a communication device.”
Eventually, he developed myoclonus, a condition that creates sudden, often frequent, muscle contractions. Myoclonus made it difficult for Dino to type. Even with his AAC device, communication became slow and difficult.
“Dino is very warm, he has a very good sense of humor, and is very easy going,” says Theano, “but he got frustrated that things took longer to do and that people couldn’t understand him. At one point, he gave up trying to communicate at all. He wasn’t participating or interacting with his peers at school. We needed to find a better device, one that could adapt to his needs as they changed.”
The perfect fit: Tobii Dynavox
Dino was referred to the Mitochondrial Medicine Program at Children’s Hospital of Philadelphia (CHOP). They referred Dino to the Department of Speech-Language Pathology within the Center for Childhood Communication for an AAC evaluation. There, Dino and Theano met with speech-language pathologist Carolyn R. Hirshenhorn, MA, CCC-SLP. Over the course of two, two-hour appointments, Dino had a chance to try a few different AAC systems to find one that would help him communicate and be a good fit for his specific needs.
“We really wanted to find a system that wouldn’t tire him out and would let him communicate at a more sophisticated level,” says Theano.
After trying several different systems, Hirshenhorn, Theano — and most importantly Dino — felt the Tobii Dynavox I-15 eye gaze system was a good match. Tobii Dynavox allows Dino to type his messages manually, with a mouse or with a joystick, and a voice output “speaks” what he wrote. To be certain Dino was comfortable with the system, Hirshenhorn arranged for him to do a monthlong at-home trial with a loaner device.
“We had such a great experience working with Carolyn and the rest of the team,” says Theano. “We got all the support we needed from the department — Carolyn even helped me do some of the paperwork for the loaner device. And now we have a device that can adapt as my son’s condition changes.”
Multiple ways to communicate
One of the benefits of the Tobii Dynavox I-15 device is that it accepts multiple types of input. If Dino’s condition progresses to a point when he can no longer use the mouse or joystick, he has the option to use eye tracking for access version without having to change to a new AAC system.
Because the system is easier for him to use, Dino is able to communicate better, the way he wants to. “He can say more and more quickly. He can type paragraphs, not just say ‘yes’ or ‘no,’” says Theano. “His communication is lengthier and more detailed. It’s not just surface conversation; it’s deeper.” She said that following a recent vacation to Greece, Dino gleefully used the system to tell everyone details of his trip.
The system also benefited him at school. Besides helping him in communicate in class, he uses it to work on his assignments, send emails, do presentations and more. “It’s what he uses to be functional in the classroom setting,” Theano notes.
“It helps me speak faster and clearer with my professor and at social gatherings,” says Dino. He also notes that, besides the system’s speech prediction feature that helps him communicate more efficiently, he also enjoys some extras that come with the system, including games and a camera.
The right AAC system opened doors
Now 20, and a little over a year since he started using the Tobii Dynavox speech-generating device, Dino has a busy schedule and is working on the kinds of goals every young person has. Despite an intensive schedule of therapy and doctor appointments, he works one day a week at a vocational rehabilitation program in hopes of landing a job in the near future — preferably one that will allow him to work with computers. He also has an active social life, taking part in acting, cooking and yoga classes at a therapeutic program near his home, as well as having friends over to hang out.
Dino is also enrolled part time in college. He is currently taking a video game programming course. His final project for the class is creating a fully accessible video game for individuals with disabilities to enjoy.
With help from Hirshenhorn to find the perfect AAC device for Dino, he now has the ability to communicate more meaningfully with his peers and family. Where he goes, his AAC system goes: on his desk at school, mounted on his wheelchair when he goes to social activities, and on a table in whatever room he is in when he’s at home.
“He loves to be around other young adults,” says Theano. “The great thing about this system is he has accepted it. He has a lot to say, and he makes great observations. He has realized that in order to communicate he has to use it, and he feels good about using it. It’s been a wonderful tool for him.”