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A modern, digital solution has given 19 year-old Sebastian Jansson, invaluable opportunities for living a more independent life on his way into adulthood – and to be seen as the smart guy that he is. With the Tobii Dynavox PCEye, Sebastian, who has cerebral palsy, can communicate with his surroundings in a way that he could not previously do. The proof is that he is now in his second year studying graphic design at the LBS Creative High School in Nyköping, Sweden.

“Without Tobii devices, Sebastian would be more encapsulated and would have trouble communicating with the outside world. However, perhaps the single most important benefit he has received is that he can now express his own will. The PCEye is his savior,” says Thomas Jansson, Sebastian’s dad.

Since both parents are also Sebastian’s assistants, there is a lot of care and effort placed on ensuring that he lives life to the fullest. Ensuring that he has the best means for communication is, of course, also very important.

Evolving with the equipment

Mr. Jansson sees a pattern in Sebastian’s development, and it is connected with the various Tobii devices he has used over the years. Sebastian received his first communication device at the age of ten when he was in fourth grade.

Sebastian has evolved along with Tobii’s development of new and even better products and solutions over the years. Mr. Jansson says that without the PCEye, Sebastian would have needed someone to constantly interpret for him. He would have been able to go to school, but would not be receiving the same kind of education that he is now getting, where he works with a range of different graphic design software.

“I use my PCEye for my school work, for example in graphic communications and graphic illustration where I draw in Photoshop and use Maya for 3D. For vector graphics, I use Illustrator, which I just started with,” says Sebastian.

When Mr. Jansson sees Sebastian’s positive development curve, he wants others in similar situations to have the same opportunities, with the same type of communication device.

“I am convinced that the sooner you get it, the better the chances are for development. And it is clear that I have sometimes wondered how Sebastian would have evolved if he had access to Tobii devices earlier in life,” Mr. Jansson explains.

With the PCEye, Sebastian can control his computer with nearly the same abilities as anyone else who uses a mouse and fingers to type with. PCEye is an eye tracker that makes it possible to control a computer, but instead of using a traditional keyboard and mouse you use your eyes.

The teacher hesitated

“I had some doubts about Sebastian when he started school and was afraid that his disability would limit him. However, now I can say that I actually do not need to change anything in my teachings in order for Sebastian to attend class. It makes me happy that he can be part of the class and more motivated to teach. This new type of technology gives the user ample opportunity to express themselves, regardless of the limitations that their bodies can place on them,” says Sebastian’s teacher, Stefan Lundal.

He notes that there is no difference between what Sebastian is doing in class and what other students are doing.  The only difference is, however, that Sebastian gets one more year in which to complete his studies.

Without the PCEye, Sebastian would have been forced to use pen and paper to attend the courses, which of course would have been impossible because he cannot use his hands. Or as Sebastian puts it:

“I would have had to communicate with the outside world with the help of my assistants who have to interpret for me all the time.”

Control over your computer

“With Tobii devices, Sebastian controls computer technology and gets the opportunity to show his creativity and imagination, something that was impossible before. He does not have to ask anyone and instead does it himself,” says Sebastian’s father.

Sebastian also uses the PCEye in his free time, where he does many of the same things that others do. He likes to go online and play computer games against people halfway around the world.

“I wonder how those he is playing against and defeats would react if they found out that they had just been beaten by a guy who plays with eye control. It’s a pretty cool thought, isn’t it?” says Thomas.

Thanks to the PCEye, Sebastian now dreams about the future, like most other young people. He would like to work at Tobii, preferably with something he has learned in his secondary education. On some occasions, Sebastian has helped Tobii by testing different products. The best thing about his journey, however, is that he now sees that in the near future there may actually be a job for him.

“I would think that I will be working with something in IT in the future,” says Sebastian.

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.”

juan_wheelchair

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.”

The name and phrase somehow seem inseparable when you get to know this multi-talented Southern California teen.

Casey, 14, is a natural for the roles he has landed in life. Among them: awesome big brother to his siblings Anna and Luke, fine student, generous community advocate, accomplished storyteller and budding playwright.

Not everything comes easily. Movement is difficult for Casey and so are other ordinary things, like enjoying a meal or joining a conversation. Sometimes his life must be rearranged around health issues related to his profound cerebral palsy disabilities. Casey enters high school this fall with an especially rough period behind him. He spent much of the past year in and out of the hospital undergoing several procedures including surgery for partial removal of his stomach, the repair of a hernia and his esophagus, which had been damaged from severe reflux.

Ever the trooper, Casey motivates others by how beautifully he handles things.

“He has the most positive outlook on life and keeps everyone else going, too,” said his mom, Beth. “He embraces life and really wants to live it as fully and happily as possible.”

Casey keeps everyone in the loop on his activities, ideas and feelings through the eye-controlled Tobii Dynavox I-12 that serves as his voice. His delivery of speeches at his eighth grade graduation ceremony, the dedication of a universally accessible playground in his neighborhood, and as a guest panelist at the 2014 FRED (Farms and Ranches Enabling people with Disabilities) conference are a few prominent examples of how he uses the device. There are scores more. Casey has used the eye-controlled technology since second grade. His unique communication journey inspired him to write a play about a whimsical family vacation entitled “Once Upon a Road Trip” using the device. The story tells why he would be lost without it.

In reality, family and friends feel at home with the technology, just as Casey does. Anna and Luke are “super protective” of their brother and want to hear him out, Beth Rohrer said. Anna, 4, is learning to talk with Casey by following Luke’s example. Luke, 10, simply waits for Casey to compose what he has to say on the I-12’s screen by moving his eyes.

“To them, it’s all very normal,” their mother said. “It’s just a part of everyday life.”

Casey considers the time he surprised his doctor by telling how he really felt one of his biggest communication successes. “He was explaining something scary to my mom,” Casey said, “So I told him, ‘I can understand everything you say.’”

Without a way to communicate, Casey says life is like constantly being thirsty and all you can do is stare at a glass of water. To further the analogy, technology lets Casey drink all that life offers because he has a voice to share his experiences with others.

“His easy manner and ability to convey what’s in his heart is what sets Casey apart,” said Jeannine Madden, Casey’s longtime instructional assistant and tutor. “People respond to him on a very genuine level and they consider what he has to say with a heightened sense of awareness.”

Back in his Cub Scout days, Casey eloquently spoke to the boys in his troop through an older Tobii device, assuring them he got along fine despite the CP that developed from an injury at his birth.

“But it didn’t hurt my thinking,” he said. “I think just as well as anybody.” Casey went on to share something equally important for others to know:

“I love to have fun and that’s not a challenge at all.”

Many people know Casey from his involvement with Family Theatre Inc. near his family’s Hermosa Beach home in the Los Angeles area.  The marquee first caught Casey’s eye on the ride home from school. After attending a show or two with Mrs. Madden and his mom, Casey wanted to do more than just watch. Family Theatre owner Craig Greely recalled that Casey went to the same school as his own children.

“I knew who Casey was for years, but he was just that kid in a wheelchair at school,” Mr. Greely said. “I had no idea what I would do with him as an actor.”   He reached out to Beth Rohrer to help identify possibilities for her son. “I wanted to learn as much as I could.” Casey proved a great teacher, too, sharing his likes and dislikes, and revealing his sense of humor and his curiosity about life as well as the theater through technology. His inner star shined when Family Theatre presented “Once Upon A Mattress” in 2013. The musical adaptation of the fairy tale “Princess and the Pea” features the role of a silent king who likes to tease the ladies. Handsome and animated, Casey thrived in the role, right up until the end of the play when the spell of silence plaguing the king is broken and he exclaims, “I can speak! I can speak! And I have a lot to say!”  Casey delivered the lines through his Tobii Dynavox device. Casey had his share of stage fright, Mr. Greely said, “But he went ahead and did it, which is really what courage is all about.”

Mr. Greely likes that the I-12 puts real-time interaction virtually within reach for Casey and his communication partners. “So much of our personality is wrapped up in our ability to communicate instantly,” Mr. Greely said. “I would never know Casey if it weren’t for that device.” Check out Casey’s impeccable timing in this comedy routine the two perform together.

While audiences are smitten with his stage presence, Casey prefers to leave his mark behind the scenes. He’s off to an excellent start. Family Theatre Inc. established the Casey Rohrer Special Needs Theater Scholarship in 2015 to open opportunities for more young people with disabilities to participate in its programs. Plans to produce “Once Upon a Road Trip” are in the works.

Casey’s writing talent took root in his elementary school language arts classes. Mrs. Madden enjoyed helping it bloom. She made sure Casey’s peers saw all he had to offer even before he used an AAC device. Though it’s hard to understand Casey when he vocalizes, he helped her give spelling tests to his first grade class by saying each word aloud with her.

That set the stage for Casey’s class participation to thrive as he integrated the technology into his school day. Mrs. Madden created a button Casey &siblingsfor one of his devices to say, “Please call on me. My hand is raised. I’d like a chance to answer,” when he felt the urge. They eventually had a system. As Casey acquired new writing skills, he typed out more detailed messages, moving his eyes. She programmed the messages on his device, each on its own button. When a language arts anthology had accompanying MP3 files, Mrs. Madden uploaded them to the devices, allowing Casey to read whole stories aloud. Casey participated in class skits and even had an “applause” button for when he wanted to praise others.

Mrs. Madden and Casey miss each other. She moved out of state this summer. This fall, he will be a freshman at Mira Costa High School in Manhattan Beach, drawn in part by its strong drama program. His love of language, whether expressed in a play, poetry, prose or casual conversation, is a gift that’s bound to nurture his future success.    “Casey’s strengths lie in his immense imagination,” Mrs. Madden said.

You can hear it when Casey recites his original poem, saying, “If I could write everything I am thinking, my words would reach the sky.”

By Patti Murphy

Carlos-yellow

For Carlos Ruiz, the beauty of life lies in participating. He finds and gives joy whether telling jokes, taking pictures of friends or rooting for his favorite soccer* team. Sometimes the happiness multiplies, like when he won a match against a player with a much higher ranking at the 46th National Chess Congress tournament in Philadelphia Thanksgiving weekend. It happened again when he performed with his high school classmates in the winter concert at Jardine Academy this holiday season. Carlos, 15, participates in all of these activities using a Tobii Dynavox I-12 communication device he works with his eyes.

Jorge and Yesica Ruiz moved from Peru to the United States eight years ago and settled in Roselle, NJ. They came seeking better resources to help Carlos, their only child, manage various challenges including mobility, speech and hearing loss related to his cerebral palsy. The journey has not been disappointing.

All along, chess has been Carlos’ #1 passion and priority. Yesica often teases that he began playing the game in the womb. All joking aside, Carlos was three years old when his parents caught him spying a book on chess at home. Within the next two years, Jorge showed his son how the game is played. Carlos would sit on his father’s lap every day, learning chess moves by heart. Jorge made cards illustrating the chess pieces. There were also cards numbered 1-8 and letters A-H corresponding with locations on the game board. Carlos, who cannot speak or hold objects with his hands, indicated his desired moves by nodding or gazing toward the cards. Another person helped him hold the piece or physically moved it for him.

It was a labor of love and a privilege for Jorge to teach Carlos and watch his skill evolve. They developed a practice routine that Carlos still keeps. Jorge gives him chess problems to solve during the week. On weekends, Carlos plays computer chess. He often studies videos of the game’s great masters.

Soon after he got the I-12 in 2014, Carlos rocked the chess world. Speech-language pathologist Lauren Davidson, M.A. CCC-SLP, saw his potential and championed his dream of playing his favorite game competitively. She borrowed Carlos’ new device for a weekend and created a chess page for it.

chess page-image

“I had to learn a little bit about chess, all the moves and maneuvers,” said Mrs. Davidson, whose caseload at Jardine includes several Tobii Dynavox users. “My goal was to make it as easy as possible for him and to have every combination of moves.”

Until that point, Carlos accompanied his dad to tournaments and even taught his cousins to play chess. Now, through technology, he proves on a larger scale that he can hold his own while playing against unfamiliar able-bodied competitors of all ages and backgrounds. When he joins his father for United States Chess Federation and Continental Chess Association tournaments along the East Coast (father and son play separately), Carlos sits on a booster seat in his manual wheelchair so he can face his opponents squarely despite his small frame. He uses his custom page on the I-12 to tell an assistant (usually his mom) where to move his pieces, adjusting the volume on the device for minimal disruption to other players during the matches, as club officials requested. Carlos naturally draws a lot of interest at the events as word of his unique abilities is gets out.

“He definitely has made a name for himself,” said Jardine principal Cynthia Isaksen, recalling when she announced Carlos’ victory at a Washington D.C. tournament and asked him to talk about the experience during a school assembly—using the I-12, of course.

There’s “definitely a huge difference” in his interactions when the device is with him, Mrs. Isaksen said. “He is a typical teenage boy. He likes to be funny and he likes to be heard. If he doesn’t have that device, he certainly feels it.”

Sometimes Carlos types in Spanish, using his eyes, on the device keyboard. Mrs. Davidson also programmed Spanish vocabulary onto the device so he can communicate with his parents in their native language. Yesica Ruiz recalled her son’s first words using it, uttered at home near the end of a busy school day. “I’m tired,” he said. “I want to go out.” Carlos takes candid photos using the I-12’s built-in camera with a mischievous “Say ‘cheese’ ” for his subjects. Other favorite expressions are “Hi! My name is Messi,” a reference to Barcelona soccer* superstar Lionel Messi. Carlos can use the device to play recorded music. For the holiday show, he used it to sing and play trumpet sounds throughout the performance.

Yesica Ruiz said the technology is like the answer to a faraway dream. Her son can say what he wants, do what he loves and feel like he belongs. Every student wants that, Mrs. Davidson said.

“When you can figure out what they want to say and what they’re passionate about, you see this light bulb go off and it’s thrilling. You know that you’ve reached them.”

*Soccer, as mentioned in this story, is the equivalent of football in the United States.