AAC success story blog posts

Andy Johnson likes—more accurately, loves—to talk about the weather. Technically, he gets about 1,000 chances to do so each day from his Waukee, IA home, by the estimated number of international hits his non-profit weather information website, wxscience.com, receives. Andy, 72, is a retired meteorologist and oceanographer. He nurtured his career while serving in the U.S. Air Force Reserve as an air crew instructor and flight examiner. Through the website, he reaches and consults with middle and secondary school teachers and their students with the aim of expanding coverage on weather-related concepts in science classes.

On a personal level, Andy is reaching many more folks by example. He feels blessed to be able to continue doing the work he loves and keeps a cheerful attitude while making his way through a different kind of storm—living with Parkinson’s disease, a condition of the nervous system that affects movement, coordination and, in many cases, speech.

Andy and his wife, Pat, live gratefully. He credits her for her understanding, patience and encouragement. She admires him for keeping active, noting that he walks often with the aid of a walker because he wants to stay strong.

Though the disease makes it harder for Andy to speak clearly, the difficulty is subsiding, thanks to his recent acquisition of a Tobii Dynavox T10.

“You can say anything,” Andy said when asked why he likes the tablet augmentative and alternative communication (AAC) device. “It is user-friendly with great menus.”

Andy got the Tobii Dynavox T10 on the recommendation of Jennifer Bodensteiner, a home health care speech-language pathologist. She knew right away what the main attraction of the technology, and its Compass communication software, would be for her patient.

“How easy it is,” Bodensteiner said. The device is freeing, Andy says. Its text-based user and Word Power page set give him quick access to preset adult vocabulary for conversation topics including the weather and so much more. Messages can be customized, as desired, and conveniently stored for future conversations. “Poor speech is no longer a handicap because my T10 helps me be understood by family and others,” he said. “It has helped me get my ideas across fast, and to adjust and adapt to situations.”

Every time someone better understands what he is saying, Andy considers it a personal victory. He has been using the T10 for just a few months and feels secure in his new voice. Andy describes himself as “determined, witty and scientific” and looks forward to spending time with new and familiar communication partners including his three children, seven grandchildren, fellow fans of the Florida State University Seminoles sports teams and aspiring weather enthusiasts he crosses paths with.

For Andy, a good chat is a great joy. His best conversation partner is his wife. He reads and listens to the poetry she writes. She loves when he tells of his experiences in ocean wave modeling (a form of climate pattern simulation) and hurricane hunting.  They watch movies with a weather theme (many in surround sound) together. “Twister”—the 1996 blockbuster—is an all-time favorite. The Johnsons also enjoy New Orleans-related films, having lived in Louisiana for many years. They have mixed emotions that their 2005 move to Iowa occurred a few months before Hurricane Katrina hit.

The constant presence and unpredictability of the elements drives Andy’s desire to raise weather awareness through the schools. As he states in the homepage message on his website:

“Most students at this level spend more time dissecting frogs and insects than they do cold fronts and thunderstorms.  The reality is that, in spite of the fact weather affects everyone and thousands perish each year from its hazards, not many know very much about how weather and climate work.”

Andy is expecting a call any day from Blake Hammond, a sixth grade science teacher at Albert W. Merrill Middle School in Des Moines. The two met about five years ago when a neighbor, Mr. Hammond’s student at the time, suggested that Andy share his expertise when it came time for the class to study the weather unit that spring. Andy immediately said “yes” and Mr. Hammond found a phenomenal volunteer. They planned lessons together—Andy providing background on key concepts, Mr. Hammond preparing lessons in a multimedia format. Students learned to use a cloud identification wheel and weather instruments including a psychrometer (a combined wet-bulb and dry-bulb thermometer used to measure relative humidity) Andy made for them, a thermometer and a barometer. Andy has attended the class three or four days a week. He wholeheartedly awaits the standing engagement each May and the class works around his visits, which are less frequent now. Students email questions to Andy. Printouts of his thorough replies drape an area of the classroom known as “Andy’s Corner”—a name that belies Andy’s style of working the room, addressing various discussion points with small groups of students as he moves about. They understand Andy’s challenges, Mr. Hammond said, and see that his abilities outshine his limitations every time.

 By Patti Murphy

Like most 16-year-olds, Kreed is an independent thinker. He enjoys having choices, and the freedom to express his likes and dislikes, whether the subject is food, entertainment, or how he wants to spend the weekend. Until recently, however, he could not communicate those things easily. Primarily non-verbal because of his autism, Kreed has a history of challenging behaviors, including self-injury, grounded in his inability to speak. Behavior and communication were practically equivalent for Kreed while growing up. He often used aggression—making loud utterances, kicking, spitting, or refusing to move—to express thoughts and feelings.

The situation is improving dramatically now that Kreed uses the Tobii Dynavox T10. As the tablet augmentative and alternative communication (AAC) system makes it easier for him to communicate, Kreed’s distinctive voice is taking shape. His language abilities are beginning to flourish as he learns that communication is about talking and listening. He is growing as a person.

Stephen Murray is a Professional BMX Rider. In June 2007, when Stephen was 27, he broke his neck while attempting his signature double backflip and sustained from a severe spinal cord injury (SCI). Stephen was left completely paralyzed from the neck down. He says, “BMX was a massive way of me expressing myself. After the accident, the BMX was done. So, my freedom of expression and communication was almost wiped out.” Almost.

Stephen was soon introduced to the Tobii PCEye Go, an eye tracker that works with standard laptops and desktop PCs. Because of the hands-free computer access the Tobii PCEye Go provides, Stephen is able to surf the web, Skype, and stay in touch with family, friends, and fans on social media with only eye movements. It has helped Stephen to regain some of his lost independence, freedom of expression, and communication.

The Tobii PCEye Go has also helped Stephan start and run two businesses, Stay Strong and the Athlete Recovery Fund (ARF). Stay Strong is Stephen’s apparel line that encourages others faced with similar challenges to his own to not give up on themselves. ARF is a non-profit organization dedicated to raising funds to support the medical costs of other extreme athletes injured on the job.

 

By Patti Murphy

Kylie Bryant (“Kye” to her friends) would probably shout from a mountaintop how she loves her new voice. Just a year ago, she had no idea she would feel that kind of enthusiasm for an augmentative and alternative communication device she worked simply by moving her eyes. The 19-year-old from Bolingbrook, IL had been using AAC technology since kindergarten and felt totally comfortable with the device access method she used all along—pressing one switch on her wheelchair headrest to scan and choose her words, then a second switch to speak them.

With her whatever-it-takes spirit, Kylie did well in school. Today she is a kind and assertive young woman who knows herself well. The future looks bright.

After graduating from Bolingbrook High School with the Class of 2013, Kylie entered Valley View School District 365U’s Secondary Transition Experience Program and will complete it soon. She is eagerly awaiting the culinary classes she begins at Joliet Junior College this fall.

Coinciding with this important time in Kylie’s life is her acquisition of the Tobii Dynavox I-15 that is her primary means of communication and is proving to be a real game changer for her. Though cerebral palsy compromises Kylie’s ability to speak and do physical tasks, she is sure of what she needs and wants, and able to express it articulately. She does so a lot faster and more fully with the new device. Yet for Kylie, communication goes way beyond talking. It is something more vital—and more empowering.

The possibility of an eye-gaze AAC system came up when Kylie needed a device with Bluetooth and wireless capabilities compatible with the electronic controls on her new wheelchair. But when it came to exploring a new communication access method, Yvette Baker-Bryant recalled that her daughter wouldn’t budge.

“Kylie fought us tooth and nail,” she said.  “She had been a two-step scanner all of her life and was real resistant to change.”

Then she had a two-week trial period with a Tobii Dynavox I-15. Within two days, Kylie knew she wanted one of her own. “She did not want to change and now I think it’s the best decision she ever made,” her mom said. “She does absolutely nothing without it.”

Most days, Kylie is at school from 7:20 AM to 12:30 PM taking vocational and life skills classes. The highlight is her job with the Dinner’s Ready food service. Kylie performs research and quality control duties, finding recipes and giving directions through her I-15 to peers who prepare and package dinners for the faculty and staff from 20 district schools who buy the take-home meals. The menu centers on a monthly theme such as healthy eating, Mexican or casseroles. Kylie said the best parts of the job are shopping at the grocery store and cooking. She is becoming a pro in the kitchen, where she operates a mixer and a chopper by touching a pad strapped to her leg. The appliances stop when she removes her hand from the pad.

After school, Mom meets Kylie at the bus and makes sure she is comfortable at home before going back to her job at a nearby insurance company. Cameras at the house allow Yvette to keep an eye on her daughter while at work. The environmental control capabilities of the I-15 similarly bring peace of mind. Kylie can be home alone for hours because she can make phone calls, work the lights, watch the Food Network and football games and play the music she likes without having to ask for help. It is easy for her to text, access social media and shop on the internet using the device.

Another reason—actually, two reasons—Kylie feels safe and sound are her protective dogs Mylie and Macie. Mylie is a Morkie (part Maltese, part Yorkshire terrier) and likes jumping onto Kylie’s lap. Macie is all Yorkie.

The youngest of four siblings, Kylie loves when her older brother and sisters come to visit with their children.  She also loves being out and about, with her I-15 beside her at favorite restaurants and just about wherever she goes.

One of Kylie’s long-term goals is to run her own assistive technology company. She has the perfect skill set for it, said Marissa Trueblood-Seifert, a STEP special education teacher and case manager. Kylie’s technical savvy is strong. So is her patience in dealing with different personalities and problem-solving. She’s been the go-to person at school when other students need a supportive troubleshooter or a mentor in their own experiences with AAC technology.

“She’s waiting for us to catch up.” Mrs. Trueblood-Seifert. “We just want to keep her around.”

Kylie, meanwhile, offers these words of wisdom on bringing an AAC device into your life.  “Choose the right one, the one that’s best for you.”

Use it all the time, she said. “Don’t get frustrated. Relax.”

By Patti Murphy

Doug Schneebeck is feeling the power of summer. That emotion, no doubt, will peak at the 2015 Oso High Mountain Bike Race June 7 in the picturesque Rocky Mountain village of Angel Fire, NM. The first U.S. Paralympic Cycling Team member with ALS, Doug, 54, hosts the event for a bigger reason: to raise ALS awareness. More concretely, the race is a fundraiser ALS for research efforts, and services for the estimated 30,000 people in the United States living with the fatal disease, and their families.

On average, 15 people are newly diagnosed with ALS (short for amyotrophic lateral sclerosis) each day.
With his own diagnosis in July 2010, Doug joined them. Within the next year, he found what he hopes will become a lasting way to lighten the grimness of a situation he shares with so many others. After retiring from a career as a civil litigation attorney, Doug started Oso High Endurance Sports, an organization that has raised more than $300,000 for the ALS community through cycling and running events. From the get-go, he had much more than dollars and cents in mind.

“I had decided to create something enduring that would contribute to the public understanding of ALS, raise some money, and be a present for our family,” Doug told us in a message composed through the Tobii Dynavox I-15 device he uses for communication. “I began brainstorming on a Saturday morning, and had a working website by Sunday evening.” The illness has taken Doug’s ability to do many things that most of us take for granted, like speaking, but his desire to help others is unstoppable.

Through the Oso High website, athletes of all abilities can publish information about themselves, their sport (not limited to cycling or running) and reach out to others to sponsor their participation in an event. Individuals can make donations to the ALS Association through the site. Doug’s wry wit is evident in The ALS Blogs section where he chronicles his adventures and challenges. When we asked him about the origin of the Oso High name, he wrote in his fun-loving way, “‘Oso High’ is a multilingual play on words. ‘Oso’ is Spanish for place, oh, so high, at about 10,000 feet, and the mascot for the race is a bear.”

Since he cannot ride his recumbent tandem trike off-road, Doug plans to ride 22 miles on the road with his wife Jean Bannon at the Angel Fire event. With an estimated 125 participants, they expect to raise about $37,000, he said.

Oso High is Doug’s passion and the I-15 helps him not just with typing, maintaining the website and other technical aspects of carrying the project forward, but keeping in touch with everyone involved. It takes a bit longer to tell a joke using the device instead of his natural voice, but he still keeps everyone laughing.  Doug is grateful to friends and acquaintances in the cycling community for their support. His biggest cheerleaders are his wife and their children—Jessa, 35; James, 20 and Abby, 18.

Doug and Jean talked frankly about life with ALS in an “Eye on New Mexico”  segment last fall. Their appearance on the local news show coincided with their participation in the ALS Ice Bucket Challenge. Doug communicated using a Tobii Dynavox EyeMax then and was about to make the change to the newer I-15. The transition, he said, was seamless. He is especially pleased with the I-15’s processing speed, mouse simulation and reliability.

“The ability to be heard in social situations is outstanding,” Doug said. Before the eye-gaze systems, he used voice-recognition software and typed on a keyboard when he could still use his hands. ”The ability to communicate is so important. I can’t imagine the isolation without the device.”

By Patti Murphy

It is almost the end of June and Christopher Viau is already having an awesome summer. Earlier this month, the Evanston, IL resident released his second book of poetry. Entitled “Being in Harmony with Nature” and featuring his own illustrations, it is a sweet collection of his everyday observations.  A watercolor artist, Chris has recently taken up chalk pastel sketching. He spends two days a week at The Arts of Life studio in Chicago’s North Shore area—one as its archivist and the other doing his own artwork.

The excellence that Chris, 38, has achieved as a writer and visual artist highlights the fact that though his speech is limited, his voice is strong. Like his creative endeavors, his longtime use of augmentative and alternative communication (AAC) technology gives him a deep appreciation for the freedom of self-expression. These days, Chris often turns to his Tobii Dynavox T10 when he has something to say. He says it was easy to transfer to the new device from the Tobii Dynavox V he used before. A speech-language pathologist and occupational therapist at The Rehabilitation Institute of Chicago assisted with the transition.

Chris likes the portability and layout of language the T10 offers. He does a lot of his own programming.  “It is a quick way to communicate,” he said.

Along with the language Chris needs to order a coffee or joke with a friend, his T10 has preprogrammed messages for long conversations on many topics, for his interests span many worlds. Chris nurtures his love of history through reading. He goes fishing and horseback riding. Sometimes he’ll hang out in downtown Evanston for the day, by the lake.

A serious athlete, Chris played on the U.S. Paralympic Adapted Boccia America’s Cup Team in 2014. His physical limitations (Chris has cerebral palsy and uses a wheelchair) seem to make Chris want to work harder for the team. A past Athlete of the Year for the Maine-Niles Association of Special Recreation, he is known as both a fierce competitor and all around nice guy. One of his coaches, Lauren Ruiz, admires his discipline and constant focus on improvement.

“The more you get to know him, the more inspiring he is,” she said. “He’s so much fun to be around.”   One of her funniest memories is when they went to a Chicago Cubs game. Chris hated to admit his beloved baseball team had an off day. “He claims they lost because I was there and brought them bad luck,” Lauren said.

As a close friend, she usually understands Chris when he speaks in his natural voice if she knows the context. She is happy that he has the technology to help him clarify information and socialize with people he does not know well. It is a great help in connecting with all the fellow athletes he meets through boccia.

“Knowing that he’s able to communicate easily gives him a lot of confidence.”

Chris said it means a lot to be able to order for himself at a restaurant or ask questions of store employees while shopping. Sometimes it’s hard, he said, because people like him are often ignored. But Chris keeps his spirits up and makes time for others. Lauren said, for example, he is always asking about her husband and family.

Family means a lot to Chris. He takes the train to his parents’ home in  Waukegan to celebrate every holiday and family birthday with them, his sister Liz, brother-in-law Chad and his two nieces—Ila, 18 months old and Ava, 4 months. He is godfather to both.

The train ride gives Chris quiet time to enjoy his surroundings. His love for the excitement of the city equals his fondness for nature. Both are captured in “Chicago’s Seasons,” his first book. Chris plans to write a third book using his Tobii DynaVox T10 while sitting outside.

Chris’ books are available for purchase online. He also keeps a blog where you can find more of his insightful writing.

By: Patti Murphy

Eight-year-old James Ellerbee III likes to go for rides in the country, so much so that his mother likes to call one of his favorite roads “James’ Way.” James is also a fan of survival video games and his face lights up when he sees Moose A. Moose, the mascot for the Nick Jr. network, on TV. He plays soccer and sometimes basketball, but usually prefers to hang out alone and watch others play. Those “others” include his younger brother Roemeillo, 6, who enjoys sports but also likes balloons, bubbles and snuggling up with a book.

Roemeillo2 (002)

Beyond their distinctive personalities and interests, the Ellerbee boys have something very important in common: They’re discovering the power of their equally distinctive voices with the aid of the Tobii Dynavox T10s they’ve had since Fall 2014. It is exciting for their parents, Latisha and James Ellerbee Jr., to see the process unfold. The tablet-style T10 is Roemeillo’s first augmentative and alternative communication (AAC) device. James quickly adapted to the T10 after using the Tobii Dynavox Maestro for several years.

The Ellerbees live on the U.S. Army base in Fort Stewart, GA where James is stationed. When the boys got their T10, they were both attending Kessler Elementary, a school for children whose parents are in the military. Latisha acknowledges that self-expression will likely always be rough for her sons because of their autism. James is non-verbal. Roemeillo (nicknamed Rogy) has similar communication difficulties though he occasionally mimics spoken language. Latisha trusts that her sons will overcome such barriers through the new technology and said it already has brought a profound change in life at home.

“It made my job easier.”

Latisha wholeheartedly digs in to tweak the words and images on the T10s to reflect what her boys need and want to talk about on any given day. Using the Tobii Dynavox Compass app, which has the same communication software as the devices, she modifies the language content on her iPad and transfers it to their devices. She makes preprogrammed content on each T10 personal by adding her own photos and images she finds online that reflect everyday experiences.

For James, Latisha created a page on the T10, with photos of the school cafeteria with phrases for ordering his meal and pictures reminding him what to say in various lunchtime scenarios—“This table’s dirty,” for example, or “I want to throw this away.” Using clip art for quarters, dimes and pennies, she designed him a page for learning the value of coins. There is also a photo of the family car he selects to say he wants to go somewhere, maybe a favorite restaurant. Communication is more direct than in the pre-device days when James scrambled around the house for menus, pictures and coupons to show his mom what or where he wanted to eat.

On Rogy’s T10, there is a page with photos of his school bus and the driver, along with vocabulary to ask to play with bubbles and talk about Dora the Explorer, his favorite character. Latisha is using the device to teach Rogy to express feelings such as “I’m tired” politely and to read.

“What keeps me motivated is that the kids want to learn,” Latisha said. “They pick up on what I’m trying to tell them.”

James and Rogy learn differently and they’re smart, said Christin Bradley, a severe to moderate special education teacher at Kessler who taught both boys. She recalled that James, who used the Maestro in her class, came to equate communication with taking care of himself. Staff required him to use the device to say ordinary things—that he wanted to eat breakfast at school that day or permission to take breaks, for instance.

“Eventually, he learned that he needed it wherever he went,” she said. The device let others understand him as he grew more independent.

Rogy benefited from using his T10 during circle or whiteboard time. He readily engaged in lessons with other students, Mrs. Bradley said, because the symbols on his device matched those on the calendar, board and other classroom learning materials. She collaborated with Latisha on creating device content to help Rogy master letter-of-the-week lessons.

“Mom is always on top of things,” Mrs. Bradley said.

Latisha, meanwhile, is excited for the future. She pictures a carefree trip to Philadelphia for a visit with her family, James and Rogy carrying their lightweight Tobii Dynavox T10s on shoulder straps as they board the train. The best part almost certainly will be talking with her boys. Their road to communication has opened and it looks like there’s no turning back.

“They’ve got a spark,” she said.

(Moose A. Moose, Nick Jr. and Dora the Explorer are registered trademarks of Viacom International Inc.)

By Patti Murphy

Like the funky music videos he produces through the movements of his eyes, Kip Jackson’s sense of humor is outrageous—in a good way.

It always was, says his sister Julie Nichols, recalling times when she lived away from Arkansas, their home state. Kip, 11 years younger, came to visit. He kept her up half the night, she said, with his funny stories, and quip after quip. “I would laugh until I cried. I hurt I laughed so hard.”

Life is different now for Kip and Robin, his wife of seven years. The laughter continues—but with a new purpose: to help and heal in ways they may not have imagined before.

kiprobin2

“We try to keep it light,” Robin said. That they do, though Kip, 43, has been living with amyotrophic lateral sclerosis (ALS) for four years. Signs of ALS, the fatal illness commonly known as Lou Gehrig’s disease, surfaced in November 2011 when Kip experienced weakness in the legs and multiple falls. The formal diagnosis came nearly a year later, while Kip was still working as a data engineer at a telecommunications company.

Now he needs a wheelchair to get around, a ventilator, trach and feeding tube. He can no longer speak or use his hands. His facial expressions are declining.

Fortunately, Kip has powerful tools for bringing out his equally sharp spirit and wit. He uses an eye-controlled Tobii Dynavox I-15 device to communicate, choosing the man’s voice with the southern accent for his delivery. A separate device, the PCEye Go, provides the easy computer accessibility Kip needs for his creative pursuits. The technology lets him get things done, have fun and be who he is. “Kip and the device are one,” Robin said.

Kip and Robin have developed their own silent language and read each other well. But the device is a necessity, filling in many blanks that crop up in everyday communication.

“Without it, I would drive her absolutely crazy,” Kip said through the I-15 when he addressed the Arkansas Society for Respiratory Care convention.

Kip wanted his audience to understand that ALS is a journey he and his wife are traveling together. “I have the diagnosis, but we both have it.”

The presence of others means a lot, Robin told us. “We’re surrounded by friends and family who provide a great deal of support.”

The Jacksons feel blessed to have Amy Wilson, Kip’s weekday caregiver who indulges his keen interest in football and his sarcasm. “She tolerates me and puts up with my smart-aleck antics,” he said.

Robin, a behavioral health specialist for high school students, says she tries not to blur the lines between being a spouse and a caregiver when it’s just her and Kip at home. “We still have date night,” she said. “We just have it at home.” It’s nice that with the I-15 he can take the lead in the conversation, queue up a movie or change TV channels.

Julie, meanwhile, has always felt like a second mom to her brother. She juggles her schedule so she can get Kip ready for bed Friday and Saturday nights to give Robin a break. While working two jobs, Julie also looks after Kip on Wednesday evenings and Sunday afternoons. She loves that his high school buddies still visit. It cracks her up that they watch football reruns—yes, reruns. Kip’s I-15 helps preserve their camaraderie. “I don’t know how they could communicate when they come and sit with him in the living room,” she said, or get the full effect of his frequent quips. “Some are funny. Some are funnier.”

The device is practical for everyone, Julie said. She appreciated its built-in alarm when Kip needed extra care through the night. “When you’re tired, you fall into a hard sleep. Kip would hit that alarm and wake us up.”

Kip took his time when shopping for his device, noting that the visual content on many similar devices was too animated for his tastes.

“TheI-15 has the best specs out there,” he said. “I liked the professional design.” The Communicator pageset he uses is super adaptable, he said. Kip streamlined its onscreen keyboard to meet his needs by enlarging the space bar and other frequently used buttons to improve accuracy while his eyes do the typing.

kiptobii

That’s how Kip is writing his first novel. Then there’s his beloved Blue Pellucidity music project. Kip makes song videos using the PCEye Go in combination with a digital music workstation and various types of music software. He uses the I-15 for the narration. The message tells you that he approaches his situation from a peaceful place.

In his optimistic style, Kip likes to say he “lives with” ALS instead of that he “has” ALS. His sometimes zany Kip’s Krusader’s Facebook page has a feel-good effect. There are photos of Kip and Robin having fun together and Kip doing magic tricks with a boy from the neighborhood. Kip’s posts on pop culture are short, sweet and sassy. He also promotes ALS awareness activities and offers encouragement in facing adversity, as he does in this post:

“Chances are that this disease will take my smile. If that does happen, know that on the inside I am full of life – always will be.”

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.

 

Did you know that typically developing children from literate homes have heard their favorite stories 200 to 400 times (Adams, 1990)?  For some students with significant disabilities, access to books can be challenging.  Many students have difficulty manipulating books due to physical disabilities (ex., cerebral palsy) while others have difficulty accessing books due to sensory issues (ex., visual impairment).  Other students may not be able to read or process written text.  With advances in technology, many AAC users have access to electronic books (or eBooks) that can be loaded onto their voice output communication devices.  This allows them to have the same rich and repetitive literacy experiences as their typically developing peers. 

What are the benefits of using eBooks on a communication device?

  • Font size and type can be modified to meet the visual needs of the student.
  • Using the Symbolate feature, symbols can be added to words to provide symbol support for emergent readers.
  • There are over 2 million books (including many textbooks) available for download.
  • Students can have access to textbooks and leisure reading materials in a more accessible format.

Students can…

–       Independently “turn” pages

–       Create bookmarks

–       Speak and highlight each word as it is spoken

–       Independently choose and load their favorite books (i.e., self-selected reading)

In my next blog, I will provide four tips for using eBooks in the classroom to support instruction.