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Better Communication Rounding Out the Circle of His Life

When you meet Juan, you want him for a friend. He’s kind, fun, bright, dependable and resourceful. Simple, silly things like watching cartoons or riding a swing make him smile. Oh, and he’s an excellent writer and loves animals, especially white tigers. That’s why “Tiggy” is his nickname.

What we really like—make that admire—about this 25-year-old gentleman from suburban Chicago is how graciously he deals with all that life has dealt him. It’s easy to understand why Juan holds fast to his freedom as well as his dreams, given the multiple challenges that his autism, cerebral palsy and post-traumatic stress disorder present.  Because of his physical limitations, activities like holding a pencil, cooking, walking long distances or climbing stairs can be problematic. Interacting with others can be unsettling because Juan is primarily non-verbal.

But Juan takes life as it comes and focuses on the good things. There’s the prospect of returning to work at a pet shop when his current round of occupational and physical therapy ends. Juan contributes to the world through his writing. His insightful blog is a steady source of untold encouragement to readers. Then there’s Allie, his gentle canine buddy. The Australian cattle dog/Great Dane mix is also a trained service dog and rarely leaves Juan’s side. Together, they navigate the surroundings when out and about. Allie keeps Juan safe whether he’s walking or in his wheelchair.

“She helps me with lots of things,” Juan says. “She provides deep pressure hugs to calm me down. She licks my hands to stop self-harm behaviors during a meltdown. She helps me stand up from sitting.”

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Most precious to Juan is his six-year-old daughter. He calls her Esperanza and they have a great relationship. He is also friendly with her adoptive parents. On their frequent visits, Juan talks with his little girl using the Tobii Dynavox T10 that has been his primary mode of communication for the past two years.

Juan got the tablet communication device after a brief phase with a communication app, casting aside his often fruitless attempts at vocalization, reliance on behaviors, and use of picture symbol cards and sign language for self-expression.  His communication book, a huge binder filled with vocabulary for everyday interactions that he carried everywhere, grew old and cumbersome.

“Using my voice was the worst,” Juan told us during interviews done by emailing through the T10.  “Nobody ever understood me.” Along with mechanical difficulties that CP causes with production of intelligible speech, Juan experiences anxiety around communicating as many people with autism do. Another issue is his aphasia, a complex disorder more often associated with individuals recovering from stroke or traumatic brain injury. It affects parts of the brain that control expressive and receptive language.

“My brain doesn’t think in words,” Juan said. That may seem an unusual statement coming from a writer, but aphasia can make it hard to remember words even when you understand all that is happening around you and know what you want to say. Some people with aphasia are left completely unable to speak, read or write.

Juan works around his speech and language impairment using tools and resources included with the T10, which he operates through a switch-scanning method that gives him access to a large selection of symbol-based vocabulary at once. He can compose messages just by pressing a switch, conserving the amount of physical energy required for communication. When the switch is not with him or fatigue sets in, Juan prefers to use Tobii Dynavox Compass software on his iPad. Either way, he likes that he can express so much so easily.

“A lot of people just think of AAC to communicate, but there is so much more,” he said. “It has schedules and timers and videos and checklists and so many other tools and behavior supports that many of us need.”

Juan grew up with both English and Spanish, but found it challenging to learn the languages because of his disabilities. The T10 plays a part in putting that barrier behind him. “I can use it to help understand a word I may read or that somebody says by typing it and looking at the symbol” for the word, he said, adding that he is always finding something new under the umbrella of practical supports the technology offers.

“These really help me be more independent by keeping me on track and helping make choices and breaking things down into easy steps.” Juan said. He also likes the step-by-step videos and practice conversations included with the device, as well as its email and texting capabilities, calendar and calculator.

Though he experienced periods of homelessness all his life, Juan never gave up. He has moved consistently in a positive direction as an adult, with supportive people and resources there to light the way. Juan got involved with a housing program and is now transitioning to his own apartment with help from a part-time caregiver and, of course, Allie. Living independently is perhaps more appealing than ever now that he can speak with those he meets.

Communication was more frustrating than functional for Juan when he first consulted with speech-language pathologist Claire Francin, M.S., CCC-SLP at the Rehabilitation Institute of Chicago on possible solutions.  She fondly recalled Juan’s good nature and open-mindedness.

“He’s pretty incredible,” she said. “I think he just wanted to figure out what would be the best fit for him.” The app Juan tried fell short when it came to communicating with partners without literacy, she said. Ideas for consolidating his communication book to make it more portable did not pan out. While the T10 doesn’t erase every annoyance—Juan still gets flustered when others expect him to type faster, for instance—it brings empowering change to his life.

“You could tell that he was excited to be able to step out of his routine, and maybe a little bit out of his comfort zone because he has the confidence to be able to communicate,” Ms. Francin said.

Juan likes that the device’s Tobii Dynavox Compass language software is flexible and reliable. He used its topic-based Master pageset as a foundation for linking to specific language content. Juan is changing things up a bit and using Tobii Dynavox Core First, a pageset allowing the systematic addition of new language content color-coded by parts of speech without changing the location of older content. Selecting vocabulary without his switch may also be easier, because the targets are bigger. Juan is keeping the Master pages on his iPad and Core First on the T10 so he can have the best of both while making the transition.

Lately Juan is focusing on ordinary communication opportunities—while shopping, meeting neighbors or carrying out other day-to-day activities—to increase his fluency with the technology. Patience is all he asks from others.

“Some people think that because I’m typing (something), it’s OK to read it if I’m taking too long or they don’t understand,” he said. “But I don’t get to read little bubbles over your head like a comic book telling me what you say. If I have to learn to understand you, you can work on understanding me.” Even Allie seems to get that Juan’s device use really matters.  “She knows when I say ‘good girl’ it’s to her,” he said.

Juan takes the conversation back to his favorite topic—his daughter—when asked what he is looking forward to most as better communication expands the circle of his life.

“To watching my baby girl grow up,” he says. “I can’t wait to see what kind of difference she makes in the world.”

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