AAC success story blog posts

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Meet Brandon: Beatle Fan Extraordinaire!

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

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!

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An exciting journey on the path to adulthood



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.

Everyday communication a threefold blessing for Tennessee family

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.

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Getting to know Gio as the Tobii Dynavox Compass App takes him in a new direction

Gio&SLP-Amy4Gio Coletta thrives in all he does, especially when people are around. You’ll often catch the extroverted six-year-old from Harbor Creek, PA waving to others and shaking their hands, even at the college bookstore where his parents work.

“He loves attention,” said his mom Haley. “He likes to be in the mix.” At the same time, Gio is an attentive listener who fully absorbs just about everything he hears. Primarily non-verbal because of his autism, Gio sometimes becomes frustrated that he can’t reciprocate in conversation. But lately, that’s been changing in a way that makes Gio and those around him very happy.

Now, when Gio wants to say something, all he has to do is bring up the Tobii Dynavox Compass software he keeps on an iPad that he uses just for communication. “It works out wonderfully,” his mom said. Gio uses a separate family iPad to read books, play games and for educational apps. He started using Compass a few months ago and takes it with him everywhere. Others finally have the pleasure of getting to know him better than before.

It means the world to Gio’s mother to know exactly what her son needs and how he feels. “Now he can communicate more functionally and more expressively. The functionality is the biggest difference,” Mrs. Coletta said, recalling that Gio could only go so far using picture symbol cards, signing approximations or a smattering of verbal approximations to convey his thoughts. Compass, meanwhile, is a resource for his overall language development, offering visual and behavioral supports. Gio likes the audio reinforcement the software provides in the form of a young boy’s voice.

“Compass is motivating and meaningful for him,” his mom said. Through his use of the software, Gio is becoming more independent in asking for help and learning the importance of making polite “I…” statements when interacting with others.

One of Gio’s closest companions on the journey is his older brother Max, 9, who was diagnosed with autism when Mrs. Coletta was eight months pregnant with Gio. The brothers have varying degrees of Fragile X syndrome, a genetic condition presenting cognitive challenges and commonly linked to autism in boys. Similarities between Gio and Max fade where their personalities come in. “They’re pretty different in how they get through the day,” Mrs. Coletta said. “What works for one doesn’t always work for the other.” Max, for example, is non-verbal and for now, doing well with low-tech symbols and unaided communication strategies (like pointing) as his language develops. He is perfectly content to be alone while Gio is more outgoing, spontaneous and easily excitable. Their mom appreciates Max’s calming influence on Gio and, especially, the quality time the boys spend together. “We choose to celebrate them every day,” she said. “I want them to be as happy and successful as they can be.”

In the morning, the boys ride the bus to the Elizabeth Lee Black School at the National Barber Institute in Erie, PA, and look for each other as the day goes on though they’re in different classrooms. At home, the learning continues.

“I’ve seen Max teach Gio and Gio teach Max,” Mrs. Coletta said. “Sometimes it’s very direct, sometimes it’s very indirect.” She likes that Max tends to go with the flow, setting a good example for Gio, who is often restless. With equal pride and joy, she tells of when Gio, through simple actions, taught Max how to work their CD player. The boys love music and dancing. Bike riding, playground visits and swimming occupy much of their free time. So does Gio’s favorite activity—gymnastics. The boys take gymnastics classes designed for kids on the spectrum. Gio is always asking when the next class is, turning to Compass to help him pose the question.

Barber Institute speech-language pathologist Amy Moczulski, M.A. CCC-SLP recommended Compass because Gio needed a primary functional communication system. She soon found that it also motivated Gio to engage with his peers and initiate interaction more often. “I had never heard him say what he liked before.”

Gio uses Compass to express himself as situations call for, whether telling classmates it’s their turn while playing a game or perhaps fishing for a compliment—as when he showed off his new shoes. Every time this happens is another chance for Gio’s communication partners to get to know him.

“He really has a desire to share experiences,” Mrs. Moczulski said.

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AAC Needs Assessment Resource

Hey everyone, Holly here! Today I have a really great resource to share with all of you – the AAC Needs Assessment Resource.

 

aacneedsassessment

What is it?

  • A simple questionnaire that can be filled out by the family, therapist, and potential AAC user.

Why use it?

  • Provides a thorough overview of an individual’s communication needs across environments.
  • Can be used for the initial AAC evaluation and/or as an ongoing assessment tool after AAC strategies and tools have been implemented.
  • Use this tool to gather information about a client/student’s ability regarding conversational topics as well as communication skills, environments and partners.
  • The information can be used to document needs on the evaluation report.

Download this resource here!

This and many other supporting resources can be found on myTobiiDynavox.com!

 

Until next time!

Eye-controlled technology a “natural fit” for woman who loves learning, language and life

andrea solomon

Andrea Solomon is a strong woman, inside and out, always showing by her example that caring for oneself while caring for others really works. While her two daughters were growing up, Andrea put on her gym shorts and sweatshirt for almost daily workouts. She loved bicycling, hiking, cross-country skiing and swimming. While pursuing her post-graduate studies, Andrea made time for community activities through her synagogue and as a League of Women Voters board member. She turned to reading when she wanted to relax. Yet family came first—and still does.

“My mom and I have a very close and special relationship,” said Andrea’s daughter Amanda. Andrea also remains close with her older daughter Dina, Dina’s son Linden, 8, as well as her own brother Scott and sister Margie. Dina was her son’s age and Amanda was 5 when their mother learned that she had MS – multiple sclerosis—more than 30 years ago. The chronic neurological disease, which affects nerves in the brain and spinal cord, is most common in adults.

Like most people with MS, Andrea, 68, has alternately experienced periods of remission and setbacks. She has taken extremely good care of herself all along, her daughter said, staying active and eating healthy to mitigate effects of the disease. “She did absolutely everything she could for as long as she could,” Amanda said. “I would characterize my mother as a strong and determined woman who perseveres through her illness with a spirit and force that astounds all who know her.” Except for a three-month stay in a rehab hospital, Andrea lived at home. Her physical limitations eventually reached a level where she needed skilled daily care, and she moved to the Leonard Florence Center in Chelsea, MA five years ago.

“It feels more like a home than a nursing home,” said Andrea, her optimistic, creative and loving approach to life untouched by the transition. She feels lucky to have a Tobii Dynavox I-12 to assist her with almost every facet of communication, especially the pursuit of her longtime dream of writing children’s literature. Time spent with Linden provides inspiration for her sweet and funny stories. Andrea has written book reviews and loves 1950s movie classics. Her taste in authors is similarly classical, though she savors a good cookbook. Andrea continued her formal education through the mid-1990s while managing her illness, earning a Master of Education degree from Harvard with a concentration in secondary education, and went on to become certified as a reading specialist.

For years, Andrea served her synagogue as a volunteer and employee. She edited publications, taught in the after-school program and eventually held the position of co-principal at its religious school. Andrea also had her own writing, editing and publication design business.

Life with MS puts a new perspective on Andrea’s love of learning and language. She is among the small but solid number of those with the condition dealing with speech loss. Andrea had very soft and sometimes inaudible speech due to general weakness and breathing difficulties that the MS presented when she met speech-language pathologist Katie Seaver, M.S., CCC-SLP a few years ago. Spoken communication, though still possible for Andrea, is less than optimal.  “If someone is face to face and a good lip reader, you can get somewhere”, said Mrs. Seaver, who routinely recommends devices for center residents whose speech may be problematic due to conditions such as MS, amyotrophic lateral sclerosis (ALS) or a stroke.

Andrea started out with an earlier Tobii Dynavox eye-controlled device. While she needed a reliable way to say things, she also wanted to write, keep up with emails, view photos and stay in touch with the world. The device lets her do all of that. With the I-12, as before, Andrea can convey whatever she wants to say. She composes and shares her thoughts by moving her eyes since she cannot use her hands.

“It was the most natural fit for me,” she said of the technology.

Strategic considerations and physical comfort played a part in recommending the device, Mrs. Seaver said. “Andrea’s positioning shifts very easily because of increased muscle tone throughout her body so her eyes may move if her arm comes off of her arm rest or if she reclines in her wheelchair. The eye-gaze camera on the device allows for that level of movement, while continuing to be calibrated to her eyes.”

Andrea spends a lot of time in the house dining area for social reasons, but also for her safety and well-being. Thanks in part to the I-12’s volume and clarity, Andrea can easily call for assistance—very important because she cannot move her wheelchair on her own. The device also provides the online access she needs to access the center’s environmental control system. Next up is for Amanda to record messages for the I-12, which will allow Andrea to speak in a familiar voice much like her own used to be. So much alike in fact that Andrea’s own mother couldn’t tell Andrea from Amanda over the telephone!

Recalling when Linden carried Andrea’s wheelchair mount to help both her and his grandma, Mrs. Seaver said it comes as little surprise that Andrea’s family mirrors her caring spirit. “She’s just a very smart, well-spoken person with great ideas and values.”

Andrea, meanwhile, considers herself—and her hopes for the future—pretty ordinary. She looks forward to watching her grandson grow, maybe finding a way to travel and the next book that she can’t put down.

“I accept life as it comes,” Andrea said. “If something doesn’t quite fit I find a way to fold that in.  It’s not inspiration. It’s the way I live.”

 

 

 

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Voice Banking + Upcoming Webinars

Happy Monday FunDay! Holly here! This week, I’m introducing you to Voice Banking and providing you with a document that will teach you how to be successful with Voice Banking. At the bottom of this page, I also threw in a few of our upcoming webinars. Enjoy!

Voice Banking Resource

Voice banking is a strategy in which you record and save portions of an individual’s speech. Often, these recordings are later used on communication devices. Voice banking is usually used by individuals who have progressive conditions such as Amyotrophic Lateral Sclerosis (ALS). These individuals are at risk for their ability to communicate through speech deteriorating. Therefore, they choose to record themselves speaking.

The resource below provides some tips for recording with Communicator 5 or Compass software as well as ModelTalker, a web based recording tool to create a personal synthetic voice.

 Tobii Dynavox Voice Banking Resource

 

New Webinars!

All webinars are 12-1pm ET:

  • Wednesday March 23rd – myTobiiDynavox: Managing your Communication Content (.1 ASHA CEU) Register here.
  • Thursday April 7th – Using the Communication Tools in Core First: Register here.
  • Wednesday April 13th – Communicator 5 and Sono Flex (.1 ASHA CEU) Register here.
  • Thursday April 21st – Exploring PODD 15 Preschool & School Pagesets (.1 ASHA CEU) Register here.
  • Thursday May 12th – Compass & the NavBar Pageset. Register here.
  • Thursday May 26th – Personalizing with Digital Images in Compass & Communicator 5 (.1 ASHA CEU) Register here.
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Introducing…Monday FunDay!

Happy Monday FunDay !

Hello, Holly here! I’m a member of the Tobii Dynavox Training Team and I’m excited to kick off a new series of bi-weekly posts that will feature helpful resources and links to upcoming or recorded trainings. Today, we have two Communicator 5 needs assessment resources to share along with a new recorded webinar!

 

Likes and Dislikes – The Emergent Communicator

A checklist can be helpful when searching for initial likes and dislikes for an individual with “emerging” communication skills. To use this list, interview familiar partners or conduct some trials with the items. After each section, we have provided some ideas of page sets that exist in the Emerging User.

 

Communicator 5 AAC Needs Assessment – The Symbol Communicator

This AAC needs assessment can be completed as part of an initial AAC evaluation or as part of on-going assessment after AAC strategies and tools have been implemented. Examples of page sets that already exist in Communicator 5 are noted.

This and many other supporting resources can be found on myTobiiDynavox.com!

 

New Recorded Webinars:           

  • (ASHA .1 CEU) Strategic Competency in AAC: Watch it here.

 

Until next time!

-Holly

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3-Year-Old With Rare Condition Finds The Power of Speech Through His Eyes

Bo&parents&deviceLike most parents, Ryan and Dr. Kim Spangler of Doylestown, PA felt their hearts soar whenever their son Boden said “Mama” and “Dada” as a toddler. They couldn’t wait to hear more from their only child. Social by nature, Bo made great eye contact. He smiled and laughed a lot. In the midst of the excitement of speaking his first real words, he paid attention to the people listening. Bo wanted to be vocal, Kim said. So the Spanglers were deeply concerned and wondered how to help Bo when, a short time later, he reverted to baby talk, apparently no longer able to express language as he would have liked to.

Bo, now 3, has MECP2 duplication syndrome, a rare genetic condition that is the “brother syndrome” to Rett syndrome. It causes learning, memory and motor control deficits. Seizures and recurrent, potentially fatal respiratory infections are also common.

Motor planning issues thwarted Bo’s early attempts to speak in his own voice. Words came out rarely, and inconsistently, but usually in appropriate contexts. His parents focused on his strengths. “He could ambulate so we would say, ‘Bo, can you go do this?’ He could discriminate and follow directions,” his mom said.

Now Bo is rediscovering the power of his voice with the help of the Tobii Dynavox I-12 speech-generating device he got last year and controls through his eyes. “The strides he’s made in just the last five months are incredible,” his dad said. “He’s more open to the process of communication.” Bo’s parents love chronicling his device use on video and didn’t mind at all when he said “My family is crazy!” for the camera.

We’re excited to tell you more about Bo’s communication successes here. First let’s share a little more background:

Bo arrived in the world six weeks before his due date and after a pregnancy with complications Kim believes may have been related to developmental delays her son experienced. “We knew something was wrong, but we didn’t know exactly what it was,” she said of months spent seeking opinions from a number of specialists until a developmental pediatrician confirmed the MECP2 diagnosis. MECP2 happens because the X chromosome has double the normal amount of the MECP2 gene. The condition is relatively new. Discovered in 2005, MECP2 occurs in 1 in 10,000 births and affects mostly boys. Rett syndrome, more common in girls, is associated with a mutation of the MECP2 gene.

The news was jarring. “Our lives fundamentally changed,” Kim said.

Friends since middle school, Kim and Ryan were married with solid careers in Washington D.C. by their mid-20s. Kim studied drug design in graduate school at Georgetown University and went on to earn a Ph.D. in chemistry. Ryan worked on Capitol Hill before becoming a federal lobbyist. She was 29 and he was 30 when Bo came along. They’ve since moved back to Pennsylvania to be around family including Kim’s mom, a special education teacher. Inspired by personal experience, Ryan is on a brand new professional path, working as an educational assistant in a middle school autistic support classroom while pursuing a special education degree.   Kim is a technical team lead for the U.S. Department of Defense. Since Bo’s diagnosis, they have taken on new roles in terms of fundraising for a potential cure and both serve on the board of the 401 Project: Cure MECP2 Duplication Syndrome. They are hosting Cure MECP2 Bucks County in Doylestown, PA on September 22, 2016.

As Bo’s parents, the Spanglers find that acceptance, action and love prevail. Ryan vows to live a day at a time, without worrying about things beyond their control. Kim pushes to find the resources Bo needs to lead his best life.

Bo-device-two“While they do understand that he has limitations, they don’t limit him,” said Shirley Shapiro, a home health care nurse with Bo three days a week. She keeps him safe, administers liquids through his G-tube, and assists him with aspiration and balance issues. Mrs. Shapiro said Bo is just starting to play with the other kids at the preschool he attends, noting that his I-12 device had a part in helping him reach that milestone. “When they see that he’s able to communicate more grown-up thoughts, they understand that he’s like them.”

More people realize Bo is smart as the technology bridges his receptive and expressive language skills.

“He did well with it from the beginning,” said Caitlin Brown, M.S., CFY-SLP, an assistive technology consultant with the intermediate unit and speech-language pathologist. “The amount of vocabulary and the types of messages (he uses) have really increased. We’ve been able to unlock what he knows.” She recommended the I-12 for Bo.

Her colleague Amy Robinson, M.A., CCC-SLP, met Bo in December 2015 and has two speech therapy sessions with him each week. “Bo’s always surprising me. I see progress every time I see him,” Mrs. Robinson said. Whether they read books, race toy cars, build things, or bring out a board game, Bo chatters about the play activities, readily sharing his likes and especially his dislikes. She enjoys watching his skill and spontaneity unfold as he learns to more fully express feelings and respond to “WH” questions.

“He’s so happy he’s communicating. You can see it on his face.””

This past summer, Bo and his parents demonstrated the I-12 at the Bluebird Circle Rett Center at Baylor College of Medicine in Houston during MECP2 Duplication Syndrome Family Conference.  In the spirit of paying it forward, they also gave families a little hands-on time with the technology. Parents were shocked—in a good way, Ryan said, by what their own kids were able to do within 5 minutes. The experience affirmed Kim’s confidence in the technology. “I think kids younger than Bo will be able to do this and be very, very empowered,” she said.

Photography by Stephanie Franko Ferraro

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