Rick Hoyt and John Costello have found ways for Rick to communicate despite the fact that Rick can't move or talk. Rick can now give speeches by typing out words with the side of his head.
"When I was a few weeks old, my dad and mom noticed I was not progressing like their friends' kids and, after the medical exam, doctors told my parents I would be a vegetable," remembers Rick Hoyt. "To this day, I don't know what kind of vegetable I'm supposed to be." Despite the fact that cerebral palsy has rendered him quadriplegic and unable to talk, Rick can still crack jokes like this through a high-tech communication device he was taught to use by John Costello, MA, CCC-SLP, who has worked with Rick for nearly 25 years.
Costello directs the Augmentative Communication Program (ACP) at Children's Hospital Boston, where he and a team of speech language pathologists and occupational therapists help non-speaking patients communicate, using everything from simple picture boards to the latest sophisticated technology. Some patients are unable to speak temporarily, due to injuries or surgery; others, with congenital conditions or degenerative diseases, will live in a nonspeaking—and often immobile—world for the rest of their lives. What they all have in common is the need to interact with families, friends and doctors. "We have the potential to help someone express their wants, thoughts, desires, emotions—and give them the chance to reveal their personalities," says Costello.
Rick, like many ACP patients, has significant motor difficulties that make other forms of communication, like writing or sign language, impossible, and is in a wheelchair he can't move himself. He's been treated at Children's since he was 10, and began working with Costello while he was attending Boston University and needed to find a way to control his computer. Since it was hard for Rick to travel, Costello often conducted weekend evaluations and consultations in Rick's dorm room or his parents' home in Western Massachusetts. During these appointments, they tried out many communication devices, including a portable aid that "spoke" words selected by Rick through a voice synthesizer. "It let me express my thoughts out loud for the first time," Rick says, through a similar device. "The difficult thing was the time it took to write a message. But the best thing was that after so many years, I finally had a voice."
The device transformed the way Rick could interact with his family. "He had all these things inside of him, but no way to tell us about it," says his dad, Dick. "With all the problems he has physically, the most important thing for him is to be able to communicate with others. He can tell us how he feels, what he wants to do, where he wants to go, what he wants to eat." The device also revealed Rick's wicked sense of humor. When his parents waited eagerly to hear Rick's first "spoken" words, they expected something along the lines of "Thank you, Mom," or "Hi, Dad." But instead, they heard, "Go Bruins." The device also let Rick put an end to a frustrating situation. "For years, I was known as Ricky," he says. "But my name is Rick. I finally got to clear that up."
For someone who can't speak or move, Rick actually does a lot of both. With Dick pulling, pushing or pedaling him, Rick has climbed mountains, trekked thousands of miles across the country and participated in marathons and triathlons. This April will mark the father-son team's 27th Boston Marathon—their 1,000th race—which they're dedicating to the ACP. Using a single switch at the right side of his head, Rick uses his current communication device, called E Z Keys, to write speeches that he can store and then have spoken aloud. This has enabled him to give the toast at his brother's wedding, conduct televised interviews about his accomplishments and give motivational speeches about defeating disabilities. He's also a regular guest lecturer at Costello's graduate classes; recently, they traveled to a conference in Holland to give a talk about the rights of a patient with severe communication and motor challenges.
Rick and Costello are passionate about erasing misconceptions about people who can't speak. "One of the greatest challenges for people like Rick is that so many people assume that when a person can't speak, it's a reflection of their intellect," Costello says. "So many people see Rick's spasticity and his wheelchair and assume he can't communicate. When people see Rick give a speech, they learn how wrong they were about him. My hope is that they also realize how wrong they were about a whole lot of other people."
Brian Ingalls speaks to Sister Carlotta of Children's chaplaincy through his touch-screen computer.
Chain of communication
Like Rick, 17-year-old Brian Ingalls is mentally sharp, but can't walk, talk or control much of his body. Costello met Brian while he was being treated at Children's for juvenile Huntington's disease, an incurable degenerative disorder that has steadily incapacitated him over the past 10 years. At the time, Brian was starting to lose his ability to speak and was facing a future in which he would barely be able to participate. For Brian's mother, Brenda, the hardest things about watching the disease progress were the fear that she wouldn't know what Brian needed and the toll it could take on their close relationship. "The idea of losing communication was devastating because that's the way we give each other reassurance, love, safety," she says.
Costello didn't waste a moment. At Brian's hospital bed and during several trips to the Ingalls' home in New Hampshire, he used a voice banking tool to record Brian speaking phrases and sentences he wanted to be able to save. Costello also taped Brian singing songs like "You Are My Sunshine," which he and his mom loved to do duet-style. Now that Brian can't speak, he can hit a button and play one of these recordings of his own voice. "These songs and messages have become so powerful," says Brenda. "We didn't lose those moments and now they're our comfort and relief."
Costello also found simple ways Brian could communicate through voice output tools that let him call for attention: With these tools, he can simply hit a switch to speak out recorded messages like, "Pay attention to me" or "Hold my hand." Or he can point to pictures or symbols on customized communication boards propped up by his bed to let people know where he hurts. "It's been important to find tools that are easy and fast and that don't require Brian, with his motor difficulties and pain, to have to think a lot about finding the words," says Costello. "The priority is to let him have control in his own medical care and give him a degree of comfort at an incredibly frightening time in his life."
More recently, Costello set Brian up with a sophisticated touch-screen communication aid called the DynaVox Vmax, a light, flat computer that lies next to him or sits on his lap. Brian's ability to move varies, but on good days, he uses it frequently by touching pictures, words or pre-stored messages on the screen and activating the voice output tool. Sometimes Brian can't see well, and on those days, he can activate the system's auditory program, which speaks options aloud so Brian can select phrases, such as, "I have something to tell you," or combine sentence parts, like "I want" and "to call someone."
At first, Brian mostly used his devices to get his physical needs met, expressing things like "I have pain here." But as he became reassured that he'd be able to get help should he need it, he started to create personalized messages and carry on conversations. When interacting with nurses, friends or family, he can select pre-stored messages that tell people things about him: what kind of books he likes to read, his favorite TV shows or anecdotes about his veritable zoo at home, especially his pet parrot. But some of Brian's most-played selections are zingers that Costello recorded so Brian could make his mom laugh. "The device is amazing because it's tailored to him and it lets me see how capable he is," says Brenda.
The device allows Brian and Brenda to have more serious talks, too. "Brian was able to tell me he wanted me to get him an angel for his bedroom," says Brenda. "I wouldn't have known that was something that he wanted, or that it was comforting for him."
Whether it's a heart-to-heart conversation or sharing a joke, being able to have two-way interaction with her son is profoundly important for Brenda. "If we lost all communication, I'd lose Brian, because that's what makes us who we are."
Carolina Martinez is a whiz at using a new eye tracking device that lets her spell out sentences with her eyes.
Creating connections
Carolina Martinez has always been a talker. She started when she was just 8 months old and picked up both English and Spanish easily. "Since she was born, I talked to her all day long as if she were an adult," says her mother, Sara, through a Spanish-speaking translator. "Everything she heard, she would be able to say it back." But when Carolina was 1, Sara noticed that her head was wobbly, as if she couldn't hold it up, and she seemed to have trouble breathing at night. Doctors diagnosed her with a muscle-wasting myopathy that was fast-acting: By her second birthday, Carolina needed a tracheotomy tube to help her breathe and a gastrointestinal tube to help her eat. Now, the 9-year-old can only move the tips of her thumbs and, since she can no longer close her mouth, can only make certain sounds. With tears in her eyes, Sara, says, "Even I have a hard time understanding her now unless I'm looking right at her."
But today, Carolina is bursting with excitement as she zips down the hospital hallway in her thumb-controlled power wheelchair. She's trying out a retina-tracking system that lets her control a computer with her eyes. It's her second time at the helm of the DynaVox EyeMax and she knows it will let her say exactly what she's thinking. Two cameras built into a small computer facing Carolina read the reflections of her retinas, and after Sue Russell, MS, OTR, her occupational therapist, carefully calibrates the system, Carolina can look at an item on the computer screen and blink softly to select it.
During her first session, Russell asked Carolina to explore the device and see if she could create messages she wished to share. Without hesitation, her eyes scanned the screen to spell the names of her parents, her name and she used the word prediction tool to generate sentences like "I like this computer" and, taking it for a spin in Spanish, spelling, "°Está facil!" ("It's easy!") Next, Carolina spelled out a poignant comment—"This is liberating"—before moving right on to communicating something more immediately relevant: "I want to eat chocolate."
Now on her second go-round, Carolina expertly creates messages relating tales of her family's recent trip to Mexico, deftly switching between Spanish and English. She can choose the voice that speaks her sentences aloud, and even how quickly the words are spoken (she's partial to one peppy voice in particular, called "Crystal"). A stickler for punctuation, Carolina found the "delete word" function right away, and is meticulous about self-editing to add the proper grammar.
"I'm amazed by this device and I am so happy it will let her be more independent," says Sara. While Carolina already makes honor roll at school, the device will help her do her homework on her own. With her eyes, she can download assignments and books from the Internet, highlight text, create outlines and look up definitions of words. It also opens social channels for her, especially around her fellow fourth graders. "She's been very frustrated in the past," says Sara. "She isn't understood and the other children lose their patience and go away."
Carolina can hardly wait to see how it helps with her studies—and to use it to talk on the phone and as a remote control for her TV and light switches. "Despite the things that happened to her, she's a happy girl," Sara says. "One thing I have taught her is that it doesn't matter if she doesn't walk or talk. The fact that she's in a wheelchair is not important. If she thinks positively, she will get to be something big."
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