Alandra Johnson / The Bulletin
• A slideshow of a day in the life of Adler at the bottom of this article
On an afternoon in early May, 9-year-old Adler Utzman let his mom know he wanted to eat crackers.
For most kids, this request is easily expressed with a few words. But not for Adler, whose profound developmental disabilities left him unable to communicate even the most basic desires to his parents.
By age 9, he couldn't express choices most toddlers can — what toy he'd like to play with, what food he wanted to eat, what to wear.
It's only within the past few months that Adler has been able to communicate a choice like this — to demonstrate his will in a measurable way. He is making these choices by using an app on an iPad, a tablet computer technology that is fast becoming a source of hope for families of children with communication challenges.
Adler has speech apraxia, in addition to cerebral palsy and some developmental disabilities. For Adler, speech apraxia means he may know what he wants, but being able to translate that into words is nearly impossible. At age 9, Adler can say just four words: car, bagoon (for balloon), pruck (for truck) and nng (for moon).
Adler is cognitively delayed and in many ways seems at the same developmental level as his 2-year-old brother, Jonah. According to an assessment from last fall, Adler had the listening comprehension and expressive communication levels of a child who was about 11⁄2 years old. He takes a long time to learn motor skills. He was nearly 4 when he first walked and still struggles to do things like climb stairs — he often has to practice a new skill hundreds of times before he can master it.
His parents, Stephanie and Steve Utzman, of Bend, have tried to intuit what Adler wanted, but they couldn't always guess correctly. Stephanie Utzman felt a distance growing between her and Adler because she could not understand what he needed or wanted.
“I felt like I broke his spirit,” she said.
That's why Adler expressing a desire for crackers feels like a breakthrough for Utzman.
“With this iPad, it's been amazing. I feel like he's there again. I finally feel like the bond is back. ... You can tell when there's a wall between you and your kid. I don't think the wall is there any more.”
Utzman is hoping the technology will also help other kids with communication challenges. With the help of Central Oregon Disability Support Network, she formed a nonprofit called Adler's Voice to give communication devices to families in need. “This is my heart and soul,” Utzman said.
Since January the group has given away 14 devices.
One device went to Kelsey Kreuzer, a 4-year-old in Redmond who can only say about 10 words due to a stroke she experienced when she was 13 months old.
Her mom, Allison Kreuzer, says the difference it has made for her daughter is “life-changing.” In the three weeks since they loaded special communication software onto the device, Kelsey has been able to ask for particular foods, choose her clothes and select activities to do, such as color in coloring books — all things that were beyond her ability before.
Gone are the 20-minute tantrums Kelsey threw while Kreuzer tried to figure out what her daughter wanted. Gone are the intense feelings of frustration on both sides.
When Kreuzer realized what it meant, she cried. “It's huge. I can't even explain it,” she said. “This is going to give her the voice she didn't have.”
There are lots of reasons children may struggle to communicate through words. And while some children with communication challenges are profoundly developmentally delayed, others are whip smart.
For Adler, it's a matter of neurological wiring. Utzman explains he has a planning problem — which means translating a word from his head to his mouth and tongue is extremely challenging.
For 16-year-old Brittany Peterson of Bend, communication is difficult because of motor function. Cerebral palsy makes it hard for the teen to speak in a way that most people can understand.
For 4-year-old Kelsey, a stroke damaged part of her brain that works with language.
Utzman estimates there are “about 250 children with significant communication needs and about another 200 with speech/articulation issues” in Deschutes County.
Advances in technology have revolutionized how these kids are able to communicate.
Paul Andrews, who served as the director for special programs at the High Desert Education Service District until last year, says 20-plus years ago, parents would try to build something out of wood and an old calculator to help their kid communicate. Even just a few years ago, communication devices might have functioned OK, but cost $7,000 or more.
Thanks to the iPad's relative low price, ease of use and many free and low-cost apps, the devices are quickly replacing many older, cumbersome and prohibitively expensive communication technologies.
The High Desert ESD currently has a closet full of old technologies that used to be popular but are no longer in demand.
The ESD, which serves seven Central and Eastern Oregon counties, has 48 iPads currently in use by students.
Bend speech and language pathologist Caroline Skidmore says she worked with children who used a voice output system, in which an individual who couldn't speak would point to a picture or word and then the device would say the word. Skidmore says they were big, heavy, hard to program and cost thousands of dollars. She says insurance rarely covered the cost. “Before the iPad, that was our option.”
How it works
The iPad is driven by a touch screen. Users upload various apps, each with a different function. One of the most well-regarded (and more expensive) apps for communication is called Proloquo2Go — which costs just under $200. Adler, Kelsey and Brittany all use the app in a different way.
Adler uses it in a basic way: His mom takes pictures of different items and then allows Adler to make a choice between them. She hopes as he masters that level, he will be able to use some of its other elements. Adler has always been drawn to games and pushing buttons, so the functionality of the iPad appeals to him. When he selects the image of the cracker, the app also says the word aloud, which reinforces the choice. Utzman says it helps Adler choose items that are not right in front of him (he can select “mac and cheese” for dinner without his mom having to make it first to see if he wants it.) Beyond that, Utzman says “the more he uses the iPad to make choices in what he does or eats, and the more success he experiences with its use, then the more inclined he will be to use it to communicate other wants and needs.” She says taking small steps — like choosing crackers — helps Adler understand the functionality of the iPad.
Brittany utilizes the app's sentence-making function with her, as she calls it, “one good finger.” Due to cerebral palsy, Brittany can't walk and has limited use of her body. But she has good control of the index finger on her left hand. As she selects images or words by tapping on them with her finger, the words appear at the top of the screen. Then when she is ready, she hits a button and the words are read aloud. She recently gave a 4-minute speech to a group in Medford utilizing this method.
Other apps help in all sorts of ways. Adler practices his fine motor skills using an app that guides him to pop balloons on the screen. There are also sign language apps, apps that help with math skills and on and on. Some help kids learn to take turns, another is called “I Need a Break” and is a way kids can let people know they are feeling frustrated.
Skidmore believes this kind of functionality can open up a new world for some children. She has been using an iPad with a girl who has Down syndrome and a severe speech disorder. “What I was most struck by was seeing what she had inside of her that I didn't know before. I was learning things that she knew that I didn't think she knew.”
It is a tool that allows a glimpse inside the minds of these kids.
Skidmore believes this kind of technology can help reduce frustration and can help kids communicate clearly and effectively. She also likes that kids can often take the technology home with them. While some previous therapy devices had to stay at school, now therapists or teachers can use apps to help children work on skills at home.
The Central Oregon Disability Support Network offers free classes to interested parents, teachers and support staff who want to learn how to use apps and iPads to help kids with special needs. The classes are offered about every six weeks — a recent one was attended not only by parents but also by speech therapists and school district employees trying to glean the latest information to help the kids they work with.
So what is it about the touch screen iPad that makes it so appealing? Why couldn't Adler just, say, point to the cracker he wanted?
Sue Siefken, an occupational therapist at St. Charles Bend, believes the brightness and contrast on the screen is attractive. Plus it's shiny and “so responsive to their touch.”
Skidmore says “kids are just drawn to computers.” The visuals are more appealing and engaging for kids than flash cards.
Tracy Gray is managing director for the American Institutes for Research in Washington, D.C., which focuses on schools' use of technology to support kids with special needs. She is hearing stories from around the country about how much technology — and specifically iPads — are positively impacting the lives of families. Gray believes children have an innate ability to figure out these tools, which is why they work so well. She calls kids “digital natives.”
Gray sees another advantage, too, in that the technology is now within reach of many families financially. That means instead of waiting to see if and when a school district will purchase a device, “parents and students can just take control.” iPads cost between $400 and $500.
“There is no way schools can keep up. Kids need them now, not in six months or nine months,” Gray said. “It's a great thing for kids to feel empowered, too ... (they are not) held hostage by the school district's ability to meet their needs.”
“It's so exciting and the potential is huge, and we are all just enamored with it. Finding out how to make it work for each student, that is kind of difficult,” said Carrie Compton, an assistive technology assistant for High Desert ESD.
Adler's Voice is an idea that Utzman has had for quite some time. She was hoping that helping others might somehow help Adler get the assistance he needed. Utzman knows she couldn't form a nonprofit to help her son, but hoped for a 'pay it forward' response. The family, who lived in La Pine until last year, can't afford private therapy. (In November they figured out how to foot the bill for Adler's iPad.)
Last June, Utzman connected with Dianna Hansen, director of the Central Oregon Disability Support Network, who loved the idea. Adler's Voice became part of the larger nonprofit. From there the goal was to find funding. The group applied for a grant from Cow Creek Umqua Indian Foundation. In December Utzman learned it had been awarded $10,000. “I was thrilled, I couldn't believe it. It was the first grant we applied for,” Utzman said.
In order to qualify, children must need help with communication and the family's income must not exceed 300 percent of the federal poverty level. While most applicants have asked for iPads, Utzman says they would be open to helping with anything, including co-pays or other technology.
“It's hard. I want to help all these kids. We are going to run out of money,” Utzman said. Every applicant so far has requested either an iPod touch or an iPad. Fourteen requests were approved, three didn't meet the requirements and seven applications are pending.
Up until Kelsey was about 10 months old, she was a typically developing child. Then she contracted a respiratory virus and it just “did her in,” says her mom, Allison Kreuzer. It turns out Kelsey has a mitochondrial disease that affects her immune system.
Now every cold means a trip to the hospital and IV fluids. “When she gets sick, there's a risk of her dying,” Kreuzer said. The life expectancy for kids with this condition isn't very long: “most don't make it to 10,” Kreuzer said.
When she was 13 months old, Kelsey could say many words, but after her stroke damaged one side of her brain that controls language, almost all of those words disappeared.
But Kelsey's desires and spirit remained intact. It's unclear what Kelsey's cognitive capacity is — she seems like a typical 4-year-old in every respect, save the fact she can say just 10 words. She is full of energy and verve. When she wanted something and couldn't explain, she would sometimes throw a screaming fit for 20 or 30 minutes.
“There were days and days of utter chaos for us,” Kreuzer said.
Not being able to give her daughter what she needed made Kreuzer “feel like crap.”
“She would just scream and I had no idea why. People looked at you like, 'You're a horrible person; you're a horrible mom.'”
But with this new technology, that chaos is gone. Kelsey is able to express herself. She uses an app to say “I want” and then fills in the blank by choosing different items from the screen. In the morning, she uses the app to let her mom know she is ready to get dressed and chooses her clothing for the day — underwear, socks, pants, shirt.
Sometimes Kelsey uses it to her impish advantage: She will turn the volume on it up and “yell” from her room “I want a drink.” Or she will use it to tell her older brother, Chase, “leave me be.” Pretty much like a typical 4-year-old.
Kelsey even uses it to connect with people she doesn't know. If they are at the store and someone says “hello,” Kelsey can touch the screen and get it to say “I'm Kelsey, I am 4, I don't speak but I can listen.” People can ask her a question and she can flip through and show them an answer — maybe about her brother or about her puppy.
She is also using it at a special needs preschool. Kreuzer had always worried about her attending school. She was fearful that without a voice, Kelsey would get left behind and left out. Now that worry has vanished. Kreuzer says Kelsey is so proud of herself whenever she finds an image that expresses what she wants to say and has the device speak for her — almost as if she were saying the word herself.
“People may think it's some little iPod or whatever, but it's not. It's a lifeline for her,” Kreuzer said.
Brittany Peterson, who has cerebral palsy, also uses that word — lifeline — to describe the iPad. She uses hers in order to talk because, unless the listener is familiar with her speech patterns, Brittany is difficult to understand. Her speech sounds garbled, and her tongue gets tired if she talks for too long.
Other than her physical limitations, however, Brittany is incredibly high-functioning. Like many other teens, she is very tech savvy. She uses her iPad to update her website and blog. She reads books with it, listens to music and communicates with friends around the country.
It's hard to imagine Brittany's life without technology. She could scratch out her name with a pen and paper, but it would be difficult for her to write much more than that. Technology like the iPad is allowing this aspiring film director to write movie scripts and blog posts.
Being able to express herself — to demonstrate her intelligence and wit — is vital for the teen.
“It's really important for me to get my thoughts out,” Brittany said.
She and her two younger sisters, Maddie, 14, and Eliza, 8, raise money for their nonprofit Helpful Hearts by selling homemade greeting cards and knitted pot holders. In the past they have donated the money to organizations helping veterans or the homeless. This time, Brittany suggested they help a child like her. They found Adler's Voice and the girls are donating the funds to provide an iPad and communication software to a kid in need.
“I think it's great what Mrs. Utzman is doing. I am glad we get to be a part of something so cool,” Brittany said.
Although she has to use a wheelchair to get around and her speech is difficult to understand, Brittany sees herself in a positive light.
“I am really blessed and fortunate to have my voice and use of my one good finger.”
She knows many kids have no words at all: “It's really sad because people deserve a voice.”
Utzman sees great potential for Adler's Voice. She believes the need is statewide, nationwide. She wants to establish more outreach to outlying areas such as Warm Springs and Prineville. Utzman is busy trying to write grants and raise money for the nonprofit. She is also hoping to put together a donation program, so when people upgrade to the newest iPad version, they can donate their old version to Adler's Voice.
Utzman looks into Adler's future and isn't sure what will happen. She was told he would never walk — now he walks with no aids. When she was told he would never speak a word, four feels like a lot.
She sees potential.
“I believe he can learn,” Utzman said.
When they first got the iPad, Adler didn't understand the meaning of it. He just slapped at the screen. It took about a month for him to begin to get how to use it. Now, Utzman says he sees it as a tool. He's gone from making a choice between two options to choosing between three or four items. He can use it to direct his play time — like choosing to play with a train or cars. Utzman believes, contrary to what some people had told her in the past, Adler does have “stuff going on upstairs. This is proving he is intelligent. He is making choices.”
Still, Adler's mind remains a mystery to Utzman. “The hardest part is not really understanding what he's thinking about.” And each new skill takes a long time to develop. “It will come. I just want it to come tomorrow.”
She wants to see him move from choosing what he wants to eat to being able to communicate feelings or pain. “Eventually I want to be able to talk to him about his day.” She wants to ask: What did you do today? What do you want to do today?
““I think it will happen. I didn't used to think it would happen. But I totally do and I can see it.”
No one knows exactly what goes on inside the mind of Adler Utzman, 9, who can speak only four words. His parents and teachers wonder: How much does Adler understand? What kind of possibilities exist for him? Adler started using an iPad in the fall in order to help him communicate. His family hopes the technology will help Adler begin to express himself so he can better communicate with the outside world. Adler's challenges inspired his mother, Stephanie Utzman, to start the nonprofit Alder's Voice, which is dedicated to helping children with communication challenges. These photographs by Bulletin photographer Joe Kline explore Adler's daily life and demonstrate how he uses technology and receives support from teachers and family.
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