Blog Posts

Speech-language pathologist Lauren Papke and her colleagues from Jacksonville, Florida’s Wolfson Children’s Hospital took Boardmaker software along when they went to Haiti in October for a weeklong medical mission. It sure is nice that our products had a small yet important role in the intervention services that the group (which also included occupational and physical therapists) provided for children with special needs in the impoverished country. We were especially touched by this email and the photos from the trip Lauren later sent us via Justin Bytautus and Chris Kovach from our sales team. Lauren’s message and actions echoes our promise to keep the power of communication on for everyone, everywhere!


Subject: FW: Boardmaker in Haiti

Hi Justin,

Here are some pictures from my Haiti trip!

haiti2My group traveled to Jacmel, Haiti to visit an orphanage for disabled children called Wings of Hope.  The children at Wings of Hope had a variety of diagnoses including cerebral palsy, down syndrome, intellectual disabilities, and autism.  When I began my education on the use of picture symbols the staff said that another team had brought similar pictures years ago.  Since the staff had no way to reproduce the symbols, once they became worn, they discontinued use of this form of communication.  They were very excited to learn that they had full access to the pictures now that they had the software downloaded to an employee’s personal computer.  I trained several of the caregivers on how to create communication boards as well behavioral and teaching supports.  Further education included determining what number of pictures to include in the visual field and when you would print on a page versus affixing with Velcro.   The child pictured below is a young man, Teddy, who has CP.  His caregivers told me that he is “very smart, but can only communicate by making happy or sad sounds.”  When presented with the communication board he immediately demonstrated communication intent and repeated reached for “music” as he enjoys to sing (make sounds).

I really think that Boardmaker will make a huge impact in these children’s lives as many of them have no other means to communicate basic wants and needs.  I am so grateful for your generous contribution to our mission!  Please feel free to use the pictures and story in any way you see fit to promote your product and spread awareness.  Let me know if you have any additional questions.

 

Lauren Papke, MS, CCC-SLP

Speech-Language Pathologist, Autism Program Lead

Wolfson Children’s Hospital Rehabilitation

One otherwise ordinary Monday back in September, Brandon Rummel enjoyed an extraordinary moment of fame—actually, for a whole hour. The 23-year-old guest-hosted “Off the Beatle Path” on KOOP Radio at its Austin, TX studio. Brandon, along with many who know and love him including the show’s creator and host Rush Evans III, will get to relive the excitement when the segment airs again on Monday. Rebroadcasts on the non-profit community station are rare, said Cynthia McFarlin, KOOP’s development coordinator. “This was an exceptional program, so we made an exception.” Part of what makes it so is that Brandon does his announcing through the Tobii Dynavox Compass software on his iPad, setting the mood with a proper and smooth British accent, his favorite voice on the app. He uses the technology to work around speech challenges that his cerebral palsy presents. A related swallowing disorder makes it difficult to form syllables into spoken words.

Leah Rummel says her son is comfortable talking in his own voice with people who know him best. Sometimes, though, others cannot understand him as well as he would like them to. The longer the conversation, the harder it tends to be. “We’ve used all kinds of things over the years” to mediate this, she said. The augmentative and alternative communication (AAC) devices Brandon used throughout his youth were at best a partial solution, sometimes too heavy to carry around or too taxing when it came to composing novel messages. “He thinks faster than he can type,” Leah Rummel said. “I think sometimes he gets frustrated, but he’ll try every way he can” to communicate. Gesturing is second nature to Brandon and, when he’s really stuck, he’ll spell out his words.

Speech-language pathologist Lesli Bassford, M.S., CCC-SLP, saw such determination when she first met Brandon as a five-year-old in a pediatric rehabilitation setting. They lost touch for several years, then coincidentally reunited when Brandon started high school. While unmistakably the loving boy she always knew, Brandon hated his AAC device, which someone else usually carried for him because of his balance issues. “It was big and it made him stand out, so he quit using it,” Mrs. Bassford said. As she continued seeing him at Creative Therapy Solutions, her private practice, tablets and apps were rising in popularity. Like many of his peers, Brandon wanted an iPad and when the Compass app came out, it presented an excellent answer to his communication dilemma.

The Beatle connection

Brandon often is a man of few words who likes to get to the point fast, Mrs. Bassford said, so the focus of their current sessions is on speaking complete sentences through the technology. Compass is great for Brandon because of its portability but also for the depth and organization of the language on it. He can say a lot while putting in just a little effort. His mom keeps Compass on a different iPad so she and others in Brandon’s life can help him edit its content for changing situations that each day brings. “We’re always adding to it,” she said. “We add things that he wants to say.”  They took Compass with them so Brandon could express things easily and clearly to people they met on their 2015 England vacation, complete with a pilgrimage through Liverpool, the Beatles’ birthplace. Brandon has been enamored with all things Beatles since he was eight years old, Leah Rummel said, recalling when she first heard him, in his fullest voice, singing “All You Need Is Love” along with a Beatles CD in the car. As a former keyboardist in a band, it pleased Leah to watch her son’s love of the legendary musical group grow. It gives him a reason to interact with the world. Brandon once got to meet Ringo Starr in person after a concert.

The karma that brought Brandon and “Off the Beatle Path’s” Evans together years later shows how truly small the world can be. Then 19 and at the end of his high school years, Brandon wanted to earn a living and live independently. Family and friends who wanted the same for him knew he needed a little help, so they formed a network to identify contacts, resources and opportunities to support his dream. During one brainstorming session, Mr. Evans’ name came up because Brandon’s mom knows his wife through a mutual friend. They decided to ask whether Brandon could join Mr. Evans for his weekly radio show to observe, listen and assist behind the scenes.

“At first,” Mr. Evans said, “I thought, ‘that’s going to be a commitment. I’m not going to be able to do my show alone.’” Then, a bond formed. “I miss him when he’s not there,” Mr. Evans said. “He enriched my life.” They attend concerts together. Brandon is good at finding facts needed for each weekly broadcast, like the names of record labels or music genres, and often has such information memorized.  Mr. Evans, meanwhile, is good at piecing together whatever Brandon says naturally or through body language, like when he makes surfing gestures to bring up the possibility of hosting a show about the Beach Boys someday.

The Beatles, of course, remain at the top of Brandon’s personal playlist and his favorite ice-breaking topic with new conversation partners—many KOOP listeners now among them. When Brandon and Mrs. Bassford programmed the Compass software for the Beatles radio show, he provided the song titles and background for his on-air narrative while she made sure it flowed.  Like his mentor Mr. Evans, Brandon is a volunteer at the radio station. Brandon also has jobs delivering the mail at the University of Texas and a durable medical equipment company. He loves payday. “It’s great,” Mrs. Bassford said. “That’s why everyone goes to work, right?”

Home sweet home, community and lifestyle

Brandon lives in Dripping Springs outside Austin on property his family owns. Someone is always there for him. His mother and Uncle Jimmy (Leah Rummel’s brother) have houses on the same land. Others who assist Brandon as he makes his way through daily routines include family friend Mary Buchanan, who also is his job coach and calls herself his “second mama” because she has known him practically his whole life.  As Brandon integrates Compass into home and community activities, it’s becoming a tool for his team, no matter how the day is going.

“The aides that take care of him, they think it’s really handy,” said Brandon’s housemate Nathan VanNostrand, 22. Otherwise it looks good to me.

“One of the things we’re working on,” Leah Rummel said, “is communicating with us when something’s not right.”

The success Brandon is enjoying in his transition to adult life has a lot to do with his caring support network, affectionately called “The Cavern Club” like the Liverpool, England nightclub where the Beatles played before they were famous and long before Brandon’s time. The network meets quarterly to help Brandon solve problems, make plans and turn dreams into reality.  He gives them an update, using Compass to convey details about his jobs, living situation and what he does for fun. Rarely do he and Nathan miss watching a TV music awards show together. Brandon is active in the local We Are the Chorus music program for adults with disabilities, goes horseback riding on Wednesdays and reserves Fridays for The Dripping Springs Friendship Club, a social group his mom started for adults with special needs.

“You usually don’t hear of people living on their own that have as many needs as Brandon does, but he made it work,” Mrs. Bassford said. Of all his great resources, his mother’s unwavering love and knack for making things happen may be the finest. Check out The Brandon and Leah Blog and this video for first-person accounts of their experiences.

brandonnephew-weddingWe’re glad we took Leah Rummel up on her suggestion to contact Brandon’s older brother Patrick Bradshaw in Colorado Springs for this story. Though 12 years and hundreds of miles apart, the guys are very close. The whole family takes pride in memories of the summer Patrick taught Brandon, who then used a wheelchair, to walk on his own at about the age of four. They were touched by the toast Brandon gave using Compass at Patrick’s wedding rehearsal dinner. At the same time, Patrick appreciates what the technology means for his brother day to day.

“It’s cool to see someone who can’t really speak get their thoughts out,” he said. “It’s too easy to ask yes or no. The device is cool because it lets you get more involved than that.”

Case in point: Brandon magnified the sentiment of his wedding toast by ending it on a Beatle-esque note.

“And remember, all you need is love!” he said.

 

“Off the Beatle Path” with Brandon Rummel as guest host re-airs at 12 noon Central Time Monday. December 12 on KOOP 91.7 FM.

Kelby’s Bio Poem

By Kelby Johnson

 

Fun, loving, autistic

Lover of food

Who is able to swing

Who feels so proud of myself

Who wonders if I will be able to talk

Who fears not having any kind of friends

Who would like to be a normal person

Who Dreams of doing things really good at school

 

Many thanks to Kelby Johnson, a fifth grader in Kentucky, for sharing this original autobiographical poem with us. Kelby uses a Tobii Dynavox Compass app on an iPad for spoken communication and writing. Kelby’s communication success story appeared here on this blog last week. If you missed it, please click here to check it out!

Fifth graders at Robinson Elementary School in Hazard, KY love having Kelby Johnson in their group for class projects. He is smart, funny, easy to work with, pays attention and gets things done. Best of all, he has a kind heart.

Kelby’s cousin Donna Smith, a sixth grader at the school, looks forward to when he stops by her locker to say hello, sometimes with a gentle hug. Such moments have a way of taking her back to when they were small. Kelby would pull Donna or her brother Kain by the hand when he wanted to join them in games or activities. Or he simply walked away when he didn’t feel like playing.

Non-verbal because of his autism, Kelby has always communicated by making gestures, showing pictures, pointing or writing. All are OK for getting simple messages across, but let Kelby share just limited amounts of information. Those who’ve known Kelby all his life or see him every day know he has way more to say.  So, people are super excited that Kelby has a more complete way of letting others hear his voice now that Tobii Dynavox Compass software on an iPad is his main mode of communication.

We met Kelby when he made the local news in his hometown back in the spring when he gave a presentation using Compass at a Special Needs Awareness Evening in a neighboring school district. His budding advocacy means a lot, said his mother, Amanda Johnson. “Now he can tell people what it’s like to live with autism.”

Kelby told a captive audience that he wants to be known as a regular kid who likes hanging out with other kids and is eager to make new friends. Frustration and silence have been lifted from Kelby’s interactions, thanks to the technology, while others have a new appreciation for who he is as a person.

“It’s just been awesome,” Mrs. Johnson said. “Totally awesome.” She delights in the revelation of her son’s lighter and more serious sides now that he has a reliable means of self-expression.

kelby-schoolworkIn the past, Mrs. Johnson said, Kelby expressed important things, like the hurt he felt when peers teased him for being different, by crying. Now he can channel his feelings into words and talk it out. Kelby’s strong receptive language skills have been obvious all along. But now his sense of humor, with a dose of gentle sarcasm now and then, emerges as he speaks through the technology. Unafraid to utter “Duh” at his own—or a loved one’s—honest everyday mistakes, Kelby is also not shy when it comes to letting others know when he is too busy for small talk. His cousin Donna likes the Quickfires feature on Compass because he can voice such things simply without typing every word, a perfect workaround for his motor planning issues. She likes that he listens, too. Once when they were doing homework together, he heard her tell her mom she didn’t know how to answer a science question. Kelby walked over to her and showed her the correct response using his Compass app.

Amanda Terry became Kelby’s classroom aide when he started preschool. She took the job because she wanted to work at the same school her daughter attended. Soon they became a nice extension of Kelby’s family. Amanda Terry knew little about autism spectrum disorders then, but she quickly identified what she has always considered to be the only thing separating Kelby from typical students in his classes.

“In a classroom you couldn’t pick him out, except that he can’t talk,” she said. “That’s really his biggest challenge.”

Mrs. Terry saw early on that Kelby liked language. She also knew his potential to do more with it by how well he matched words with corresponding picture symbols on an app and mastered new vocabulary as easily as his peers. Mrs. Terry wanted to help Kelby fill whatever gaps his inability to speak created. She recalled her enthusiasm when his mom asked her to come over to their house to check out the Tobii Dynavox Compass app she had found online. When Mrs. Johnson asked for her opinion on whether the software would allow her son to branch outward in his development of language, literacy and social communication skills, Mrs. Terry gave two thumbs up. After a free trial period with the software, Kelby’s mom bought him the app and got a second iPad for it.

“When he was first starting,” Mrs. Terry said, “it was very important to keep that separate from his other iPad because he associates that with fun time.” For Kelby fun goes beyond tablet computers. He likes swimming, skating, beach vacations, ATVs and motorcycles. He likes the weights, swings, weighted blankets, exercise balls and other items that ease his sensory challenges.

Each day gives four-year-old Ava Facchinelli plenty to talk about. The subject might be a field trip with her junior kindergarten class, the music she and her older sister Clara like, or a favorite book. Sometimes she simply wants to say she cannot wait until her dad comes home from work, or express her desire for something specific to eat (like ice cream) or ask to play with a certain toy.

avaclaraLike each of us, Ava has a unique appreciation for all that language lets her do—from making choices and requests to cheering or complaining. Though non-verbal, she is becoming more fluent in self-expression each day. Jennifer and Herman Facchinelli make sure their little girl is never without the Tobii Dynavox I-12 eye-tracking augmentative and alternative communication (AAC) device that Ava uses, her eyes leading the way as she chooses her words.

“Ava takes it everywhere,” Mrs. Facchinelli said. “Exposure is key.”

Mom, dad and Clara, 6, are always modeling use of the device so Ava, whose inability to speak results from her Rett syndrome, learns by their example. “The way I see it,” Mrs. Facchinelli wrote in a blog post, she’s not going to figure out how to use it if she doesn’t see others use it.”  As she later told us, you wouldn’t hand a child a pencil and expect them to write their name without first showing them how.

Those closest to Ava, including her maternal grandparents who live with her family, are forever embedding the technology in whatever happens to be happening in their life on a given day.

“She has this family that has rallied around her like you wouldn’t believe,” said Chicago-based educational specialist Susan Norwell, M.A., ATACP, who is well known for her work in the Rett community. “They’ve really embraced communication as just what they do.”

Rett syndrome is a neurodevelopmental disorder primarily affecting girls, compromising their ability to speak, walk or purposefully use their hands. The condition also compromises the autonomic nervous system in ways that may dysregulate breathing, heartbeat or digestive processes.

“The laundry list of symptoms can at times be overwhelming,” said Mrs. Facchinelli, “but we try to stay positive and celebrate Ava for the awesome person that she is.” She took a leave from her job as an elementary school music teacher to be with her daughters full-time during their formative years.

The Facchinellis have made purposeful communication a top priority for Ava since the day of her diagnosis at age two. Two weeks later, the family drove from their home in Ontario, Canada to a Rett conference in Washington, D.C. There, they met Ms. Norwell who, Jennifer Facchinelli said, “had faith and confidence” that Ava was bright and that others would see it, too. Shortly after, they went to Chicago to meet with her again and together explored ways to support Ava in reaching her potential. At the time, Ava had a Tobii Dynavox PCEye Mini for computer access through her eye movements that they packed up for the road trip. Seeing that she easily engaged in playing cause-and-effect games, listening to music and reading books through eye-gaze techniques, her adult helpers eagerly guided her adoption of technology as her voice.

Ms. Norwell saw as a guest in the Facchinelli home why Ava is so successful. Ava’s parents customized the I-12 from the beginning. Beyond the mechanics of AAC device use, their routine modeling and embedding put Ava where she needs to be in her language and literacy development. A tipping point occurred when Ava spontaneously chose phrases from her I-12 to comment on a story they were reading together. “When you stay at someone’s house, they can’t fake it,” Ms. Norwell said. “That doesn’t happen by accident. I can’t speak highly enough of what the family has done.”

Echoing the praise is Andrea Hatherell, the speech-language pathologist at Holland Bloorview Kids Rehabilitation Hospital in Toronto who sees Ava for therapy. Ava used Tobii Dynavox Sonoflex language software on her PCEye Go for briefly commenting during the activities she also used the device for. But she had more to say and soon started building two- and three-word phrases to share her thoughts. While handling the evaluation and paperwork for the acquisition of the I-12 device, Ms. Hatherell knew what Ava’s parents knew all along: that their youngest daughter, who already conveyed much through eye contact and facial expressions, could accomplish so much more through technology made specifically for communication.

“They’ve really embraced AAC as a language that they have to learn,” she said, recalling her delight

Ava continues to use the PCEye Go for educational and recreational software. She often uses the devices when they told her Ava ordered sweet potato fries at a restaurant using the I-12. “It’s nice to see it being used in the community that way.” Sometimes Ava uses both devices simultaneously, as in the video below where Clara and her are making music together. While Clara plays the piano, Ava has software for playing instruments of her choice and turns to her AAC device to talk about on the music.

The sisters love that they can enjoy (and respond to) each other’s words, their mother said.

While “truly grateful for the incredible technology” and that Ava started young, Mrs. Facchinelli says ongoing communication success will be up to Ava and the people around her. You sense her excitement about the vast stream of language that Ava has yet to encounter.  “We’re trying to immerse her in it. It’s not perfect, but she’s learning.”

“Can’t” and “won’t” are two words that rarely pop up in the process as they scout daily communication opportunities and gently insist that Ava turn to the technology to say why she’s laughing, what’s bothering her or what’s on her mind at the moment.

“She doesn’t always get her way,” Mrs. Facchinelli said, “but I want her to know that when she talks we’re listening.”



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.”

Each day is a kaleidoscope of challenges, triumphs, learning and love for Lily, Bella and Rylee Heiss.  And now that the Hendersonville, TN sisters have their Tobii Dynavox T10s with Compass communication software in place, their mom Danielle says they’re getting more out of life because each has found her voice.

Though some may see them as fragile, the Heiss sisters are strong in mind, spirit and heart. They’re excellent spellers, good with numbers, love swimming and horseback riding, and care about people. The girls were born with Joubert syndrome, a rare genetic malformation affecting a part of the brain that controls balance and coordination.  Apraxia of movement, intellectual disabilities, visual impairment, and liver and kidney problems are also associated with the condition, along with oral motor skill deficits and apraxia of speech.

The Heiss girls are non-verbal. For most of their young lives, they were a puzzle in that their receptive and expressive language abilities didn’t seem to match up. But now, with technological support and human encouragement, they’re starting to bridge the gaps. “They’re highly observant girls, taking in everything in their environment,” said their speech-language pathologist, Sara Schneider, M.S. It was just a matter of waiting for the right tool to come along so they could convey to others what they knew.

Bella and Lily, nine-year-old twins, were introduced to augmentative and alternative communication (AAC) technology first. Sign language just carried them so far because of their motor control issues. “It was really very limiting and relied on familiar people to put together the rest of the message,” said Mrs. Schneider, who works at Sumner Station-Sumner Regional Medical Center.  The girls also used an AAC app to make requests but needed more vocabulary to balance their expressive and receptive language.  Mrs. Schneider had Bella and Lily try a device offering both eye and touch access. Their condition makes it difficult for their eyes to work together so the touch access option proved more successful. After learning some basics of AAC device use, the girls again reached a standstill. A more portable, language-boosting device was in order to help them move forward.

By this time, Mrs. Schneider was also seeing Rylee Heiss, a perceptive girl eager for the same freedom of self-expression her older sisters enjoyed. Knowing the potential benefits of AAC intervention and the planning it required, Danielle and her husband Ched decided to pursue it earlier for Rylee.

The T10, with its tablet design and flexible Compass content, seemed a promising solution for the three Heiss sisters.  So far, it is. Through modeling, their parents are showing their daughters the mechanics of using the device while introducing new vocabulary. Sometimes the girls motion to mom or dad to hold their hands steady while they compose messages. The girls respond to questions in age-appropriate language, sometimes selecting a pre-programmed message. They love spelling and are learning to use the device keyboard to type complete thoughts, letter by letter.

For Danielle, adapting to the process is not so unusual. She had a brother with cerebral palsy who could not speak. The two of them communicated intuitively through facial expressions and laughter. As her girls grow used to their AAC devices, things they talk about give their parents insight into their unique personalities.

Bella, a quiet thinker, has expressed frustration at her inability to speak. Combining single words with short phrases, she used the device to say she wanted to be able to talk to her friends, but her brain did not let the words come out. A favorite memory is when Bella, who likes to be outside, said she wanted to celebrate her and Lily’s birthday with a picnic and a Hello Kitty®* backpack as a present.

“I was in tears that for the first time my six-year-old was able to tell me exactly what she wanted for her birthday,” Danielle said.

Bella once asked her parents for two goldfish—one for her and one that her sisters would share.  She spelled N-E-M-O on her device when asked what she would name her fish.

Lily, who tends to be free with her emotions, turned to her T10 months after Danielle gave birth to a son, Elijah, who had symptoms of Joubert syndrome and lived for less than a day. “She said, ‘I miss my baby brother, I know he is in heaven and I want to go to heaven with him,’” Danielle said. “Without that device, she would have struggled to keep her feelings inside.”

Recently, Lily argued with her mom using her device. Danielle said they were going to the mall. Lily, eager to eat at the restaurant there, voiced her disappointment when Danielle told her they were shopping first. “I do not like that idea,” Lily said.

Rylee, 5, also has her silly and serious sides. She likes watching football with her dad and used her T10 to tell him, “I want a pink football.”

Mrs. Schneider particularly liked the way Rylee kept a conversation going independently one summer day.

“How are you?” Mrs. Schneider asked.

“Terrible,” Rylee said, “I have a bug bite on my face.” After a brief pause, she typed “Let’s ask my mom for some cream,” on her device. Mrs. Schneider said the bite was too close to Rylee’s eye for cream and they did not have the cream with them, anyway. So Rylee simply told Mrs. Schneider, “Thanks for your help anyway. I will be OK.”

heiss girls-cornbread

Danielle and Ched look forward to interactions that will unfold as their daughters start to use the technology with unfamiliar people in broader settings. They’ve set the stage by encouraging them to use it at home for communication during activities like playing games together or helping mom try out a new recipe.

“The next frontier is to integrate their Tobii Dynavox devices into everyday life,” Ched Heiss said. “The more opportunities they have to use them socially, they better they are at using them.” They use their devices to order at restaurants, where Danielle finds reaction to the technology interesting.

“Some people are just really excited and think it’s the coolest thing in the world,” she said. “Sometimes you can tell they’re a little bit uncomfortable, but they’re usually kind.”

The positive change the technology brings is what matters most.

“Before, we didn’t even know their favorite colors, something parents might take for granted with their own children,” Mrs. Schneider said. The Heiss girls’ success, she said, begins at home. “They have an incredibly supportive and involved family. That never ceases to amaze me.”

The girls are homeschooled and it is not unusual for some of their lessons to occur in waiting rooms between therapy appointments. Special helpers keep the daily routines manageable. One is Jane Speyer, Rylee’s former physical therapist.  Retired and wanting to do something meaningful, Mrs. Speyer volunteered to help the Heiss family at home while Danielle was pregnant with Elijah and stayed on board for about a year. Mrs. Speyer sees improvement in the girls’ communication skills each time she visits and enjoys receiving emails that the girls write and send from their T10s.

Another special helper is Danielle’s mom Lily Cloutier, who lives with the family. The girls know her as “Grand-Maman”—“grandmother” in French Canadian, Mrs. Cloutier’s native language. She likes that they can tell her things that are important to them, as Lily did when Danielle left with Rylee for speech therapy. Lily usually went with them, but didn’t have an appointment that day. She told her Grand-Maman she felt confused and upset that they were going without her.

“It was good for me to know what was bothering her in the moment because otherwise we would have had to play a guessing game,” Mrs. Cloutier said.

Through technology, Grand-Maman is finally getting to know her granddaughters better.

“It’s a relief to know how they feel about life.”

 

*Hello Kitty® is a registered trademark of Sanrio Co., Ltd. – Hello Kitty ©1976 SANRIO CO., LTD.
*KerPlunk® is a registered trademark of MATTEL, Inc.

We hope you enjoyed our Compass boot camp and were able to grab some help tips n tricks from each webcast. For even more webcasts, and even more tips n’ tricks, we’ve created a document for you so you’ll always have them in one place! Check it out below…

Tobii Dynavox Compass AAC Best Practices Webinar List

And, as a bonus, we’ve also included a great document on 20 Ways to Increase Classroom Participation!

20 Ways to Increase Classroom Participation

Post by Emily Webb, Speech and Language Therapist/Tobii Dynavox Community Evangelist

Life as a Newly Qualified Therapist is daunting. Wide-eyed and enthusiastic with a degree hot off the press, but an overwhelming feeling that you know nothing.

Never one to make life particularly easy for myself, I have chosen to undertake my first role as a Speech and Language Therapist at Tobii Dynavox, who just happen to be the largest AAC company in the world.

As a result, I now find myself talking to some of the most qualified AAC specialists internationally, trying hard to strike the balance between being knowledgeable enough to engage meaningfully in conversations whilst humble enough to ask the most basic questions. This is all whilst trying desperately to hide the fear in my eyes when anyone mentions anything about programming.

So, two months in to the job let me summarise what I have learnt in to two key points.

  1. There are LOTS of AAC options.

And I mean lots. I spent my first couple of weeks dreaming about pagesets, vocabulary packages, symbols, core vs pre-programmed messages, hi-tech, low-tech, paper based solutions, PODD, Compass, Communicator, switches, eyegaze, partner-assisted scanning. I could go on…

Stepping in to the AAC world is overwhelming. But it’s overwhelming for good reason.

Each individual requires their own particular mix of AAC options to build an effective communication system. This means that lots of options are available, meaning that people like me need a lot of time to get their heads around all of these options.

It means that it’s OK not to know everything and it’s OK to feel that you never will.

Which is why…

  1. There is a HUGE amount of AAC support online.

The AAC community online is large, active and vocal. I am now a member of several AAC groups on Facebook and not a day goes by without several exchanges from various members sharing achievements, difficulties and day-to-day advice and support. There are a huge number of individuals dedicated to promoting good practice with AAC.

I read blogs, engage in Twitter discussions, follow Pinterest boards, Google most terms that I see on Facebook and find hundreds of search results.

These forums teach me something new every day and I have been welcomed and supported by people who have never even met me. I have learnt from parents, teachers, therapists and users themselves. Social media allows a unique insight into the thoughts and feelings of families and AAC users accessing speech therapy services. Every pin, tweet and post adds something new to the mix, something to be considered and something to learn.

Turns out, it’s OK knowing nothing. You just need to know where to look.