Posts

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.

 

A while back we saw a Dear Abby column in the Erie Daily Times (Erie, Pennsylvania).  Several campers and device users from Camp Courage had written to Abby to let her know that they had some ideas to share with people who might feel uncomfortable talking to people using a speech generating device.  Check out the article at Abby’s website.  Just scroll about ½ way down the page to the second letter.

Just yesterday, I was making a purchase at a gift shop checkout counter. While I was being helped by one employee, another was on the phone with a customer. I overheard her say, “No, we don’t have those.  I’m sorry,” before hanging up.  After the call ended, the employees talked about how the person on the other end sounded like they were using a computer to talk.  The employee who took the call said she didn’t really understand what the caller was saying.  Instead of giving the person an opportunity to clarify the message, she pretended to understand and just closed the conversation. How sad!

The suggestion by these campers that people should feel free to ask questions and not pretend to understand tells me that this must happen often to users of speech-generating devices.    What a wonderful idea to post this message in Dear Abby so that others may read it and know that it’s ok to ask questions! This makes me wonder- what other suggestions would users of speech-generating devices want to share with people who may be unfamiliar with this technology? What would you want that store employee to know now?

 

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.

In my last blog, I introduced the idea of using eBooks to provide independent access to books for students with significant disabilities.  eBooks are an electronic version of a printed book which can be read on a personal computer or hand-held device designed specifically for this purpose (Oxford Dictionary of English). eBooks can also be read on dedicated hardware devices such as Tobii Dynavox T-Series, eBook readers, personal computers and some cell phones.  eBooks allow students with physical disabilities (e.g., cerebral palsy) to independently turn pages.  eBooks can also be read out loud for students who are emergent readers.

While reading books is certainly a leisure activity that should be supported for students with special needs, there are many classroom applications as well. 

4 Tips for using eBooks in the classroom

  1. Load a dictionary and with the speak features of your device; you can create a “talking dictionary” for your students.
  2. Use eBooks during guided reading activities. This is one component of a four-block reading program, developed by Pat Cunningham and Dottie Hall.
  3. Download national or local newspapers to read about and discuss current events. 
  4. Provide visual and auditory feedback by using the Highlight as you Speak feature. This feature will speak the current eBook page and highlight each word as it is spoken.  This feature can be turned on by going into the Message Window tab in the Interface Features menu.

 

I recently read an article written by C. Jorgensen (2005) where she proposes a new paradigm in the area of disability and competence.  She found that often times if service providers weren’t sure what a student was capable of, it was presumed that the student could not (and never would be able to) learn to communicate.  In the article, Jorgensen advocates that setting high expectations should be the basis for decision making regarding educational programming.  In addition, Jorgensen stated that decisions made based on high expectations will lead to a higher quality of life in both school and beyond.

What if we lived in a world where high expectations were set for all students with significant disabilities?  What if every classroom created a positive communication environment?  What if communication partners spent more time working on their own communication skills so that they could better support students with complex communication needs (CCN)?  What if we were committed to ensure that parents and educators worked together towards a common goal; building communication and learning success for students with significant disabilities?

I’ve worked with many children with significant communication disabilities over the past 16 years.  In my experience, children with school teams and families who have high expectations and support communication and learning in all environments, always succeeded more than those children who with limited or no expectations put upon them.  Augmentative and alternative communication (AAC) doesn’t just work by itself.  It requires direct teaching, opportunity, and expectations. When high expectations are set, literacy is addressed and social skills are taught. Children have many, many opportunities to practice skills in a safe and supportive environment.

I’ve always tried to have great expectations for every child (even if everyone else thought I was nuts).  I go into every situation assuming that the child is brilliant.  Research tells us that the success of a communication interaction for individuals with complex communication needs is often dependent on the skills of the communication partner (Light and Binger, 2007; Drager, et al, 2006; Bruno and Trembatth, 2006).  With this in mind, I always hold myself responsible for the learning and success of my students.  If things don’t work…I look to myself and the environment to figure out why it’s not working (never the student or device).

I once met a young man who had limited expectations placed on him.  No one expected him to learn to read. No one expected him to sit during classroom activities.  No one expected him to be potty trained.  No one expected him to ever do much of anything.  Once this little guy had access to a school team who placed expectations on all students, tools he needed in order to be a good communicator and learning opportunities, he began to soak things up like a sponge.  I am happy to report that this young man is now reading at grade level and is an effective user of an augmentative communication system.

Lesson learned…Create great expectations and they will learn.

We all know an individual with autism who has a special interest, fascination, or “enthusiasm.”  I know a 6-year-old who loves all things dinosaur, a 5-year-old who likes strings, and an 8-year-old who is into lights.  Speaking youngsters with Autism often talk about their special interest topic, and savvy communication partners can use this interest as a way to engage and expand communication.

Individuals with Autism who use augmentative and alternative communication (AAC) often have a special interest area as well.  Why not use their interest area as a way to engage and expand communication through their AAC system?  We can do this in several ways:

Categories (My Words, Vocab Lists):  Be sure that in addition to the usual word categories present in the AAC system (animals, foods, body parts, places) that there is a category for the special interest (dinosaurs, lights, strings).  Within the category you can have word lists that allow the AAC user to label, request, and comment about members of the category, be it dinosaurs, lights, or whatever.

Pictures (My Photos, Picture Albums):  We use photos of people, events and places in AAC systems to allow the AAC user to recall and tell about important things.  Photographs of special interest items can also be included in photo album pages.  Each photo is paired with appropriate words, phrases and sentences to allow the AAC user to tell about his interest in detail.    Pictures of the AAC user playing with or arranging his items can be accompanied by messages that describe the items, tell about the event pictured, and even invite the communication partner to engage further.

Scripts:  Some AAC users benefit from the structure of a pre-planned script on their AAC system that includes several things to say about a particular topic.  A special interest is a perfect script topic, and the AAC user can use the script to engage with peers enthusiastically and successfully.  The script might be pre-programmed messages to activate and speak on the AAC device, or it might be picture-supported messages on a paper communication board that the user can point to.  The script would include an introduction, several message turns, and a closing.  The AAC user’s part of the script might be something like this:

  • Did you know that I love dinosaurs?
  • My favorite is the Triceratops.
  • Triceratops was a plant-eater.
  • We can’t see them anymore because they are extinct.
  • Do you like dinosaurs?
  • Maybe we can play with my dinosaur toys someday.
  • See you later.

We all prefer to talk about things that we care about.  Keeping in mind that this is true for our AAC users also can help us be better communication partners.

I was in a workshop recently when I heard someone say, “He can’t learn to use his AAC device for anything but requesting because he has autism.”

Could that be true?

I don’t think so.

I think we often introduce AAC equipment and strategies in activities that involve requesting.  Why?  Because it is motivating and often instantly successful.   Because it works!  We then often expand opportunities for requesting to additional activities throughout the day, so the AAC user can request snack foods, center time activities, music, break time, and even which classmate to sit with.   Many opportunities, but only opportunities for requesting.  Is that all there is?

We know that the ability to use AAC to request may not automatically transfer to other functions of language without teaching.  That is what the research suggests.  So what that means for us is that we need to introduce AAC use for other functions of language and then use our communication partner strategies to teach it!

How do we do it?

We can model and teach AAC use for commenting, protesting, and sharing information in virtually any setting.

I can show commenting at its most simple by saying and touching the AAC device to indicate “this is good” or “this stinks,” while we are having a snack.   “This is funny,” while reading a book or “This makes me mad,” when having difficulty with something.

I can show protesting by modeling the use of the AAC device to say, “I don’t want to,” or “No” after presenting items or activities that I know the AAC user does not like.  “Stop it,” when a classmate is being a bother.  I can use sabotage to create situations that lend themselves to protest and then assist the AAC user to do so with his or her device.

I can teach information sharing by using photographs of the AAC user engaged in fun activities or with his or her family members, and messages that tell about the people and events depicted.  “This is my dog.”  “This is me at Christmas with my presents.”  “Look at me on a bike!”

Have a look at the AAC users that you support.  Are they using their AAC device for a variety of language purposes?

 

We are in a constant state of reflection, whether it was in grade school getting a report card, or as an adult having an annual performance review, we take the time to evaluate our areas of strength and areas that could use improvement.  We are constantly looking back, making adjustments, and moving forward as the best version of ourselves.

So what does this rambling have to do with ALS and AAC? Everything! It is easy to get comfortable with familiar communication partners, or with using the more routine messages on a daily basis, but how well do your strategies work when you are faced with a new communication partner or unexpected situation?

I often talk about the AAC Needs Assessment, and I am bringing it up here because it is so important. I encourage you to take a few minutes of your time to reflect on what you are able to communicate efficiently, and what areas you would like to improve on.  The AAC Needs Assessment is a quick checklist that will help you identify those areas and maybe identify areas that you haven’t thought of before. After you complete the AAC Needs Assessment, file it away, in six months, pull it back out, what areas have improved, what are some new areas that you would like to work on. Take the time to reflect, delight in your strengths, and set goals for your areas of need.