iPads give children with Down syndrome a voice

UCF recently partnered with the Down Syndrome Foundation of Florida to offer iCan Communicate, a program designed to help children with Down syndrome who have limited speech capabilities. This program, which was held March 22-24, consisted of therapy sessions and clinics to test how children responded to iPad apps created to help them communicate.

“They didn’t want to be just handing out the same thing for every child because they really have individualized needs,” said Jennifer Kent-Walsh, associate professor in the Department of Communications and Science Disorders and director of Florida Alliance for Assistive Services and Technology.

Various vendors that Kent-Walsh partnered with in the past donated the apps, which cost between $200 and $300 each.

One of these vendors, AssistiveWare, donated eight copies of its app Proloquo2Go, which is currently being used by 3-year-old Meredith Griffin.

Griffin has a rare case of esophageal atresia, a birth defect in which an infant is born without part of his or her esophagus, and a paralyzed vocal cord, which have caused her to have complications with her speech. She currently wears a trach, a breathing tube placed surgically into the trachea, to help her breathe, but it makes speaking even more difficult.

“She could possibly speak around [the trach], but now it looks like she has a paralyzed vocal cord, which takes more coordination for breathing and swallowing, it’s so much more work for her,” Meredith’s mother, Sonya Griffin, said. “She just doesn’t know how. Ever since she was 3 months old she’s had a trach. Speech never existed to this point. Meredith’s very smart. Her biggest deficit is that she doesn’t have a way to communicate. How frustrating is it when you can’t talk?”

UCF plans on continuing this program by holding fall and summer classes. The program is also in the process of creating follow-up classes for families that have already went through iCan Communicate to see how the child is adjusting and where improvement needs to be made.

Though Sonya said it’s been a challenge to get the app organized, she thinks that it will be able to grow with Meredith as she gets older.

“Her vocabulary is growing, and I can tell that she’s liking to be able to have a voice,” Sonya said.

Kent-Walsh said she’s seen improvement in the children who have used the technology, but it’s the continuous training and evaluation that is still needed. This way the children’s speech can develop to be more understood and so they can grow to be more independent.

“We’re excited about a lot the things that we’ve seen with these families, but of course it is an ongoing process,” Kent-Walsh said. “Each language intervention goes along with them in the long term to help them how best to use the technology in their everyday lives.”

The program also consisted of therapy sessions led by graduate speech-language pathology students to figure which app would be fitting for each child’s speech problem.

Caroline Krohne, a graduate communications sciences and disorders student, participated in iCan Communicate as a requirement of one of her courses as a service learning project.

“[The children] were so energetic and motivated to work with us that it really made it a great experience,” Krohne said.

Her part in the therapy process was to evaluate how the children would be using the app. Since most of the 15 kids that came were of school age, they determined what application would be most useful for them as they communicated with their teachers and peers.

Pamela Resnick, assistant regional coordinator of FAAST demonstration center, clinical educator and lead technology specialist at UCF communications disorders clinic, said that the 15 children that participated in the program ranged vastly in both age and speech capabilities.

“Some of them had some verbal output, others had none,” Resnick said. “Some of them had verbal output but it was not highly intelligible where they needed a speech-generating application in order to communicate.”

The experience was not only beneficial for the children but an unforgettable experience for their families as well.

“It was extremely touching for some families,” Resnick said. “Some families had tears of joys because they had never heard their child say their own name. So it was very moving.”

For more information on iCan Communicate’s future visit http://www.dsfflorida.org/iCan_Communicate.php.