Device helps Down syndrome student communicate

By

CASPER, Wyo. (AP) — Kelby Watson stood outside his apartment on a cold April morning, scanning the parking lot for his school bus.

The 16-year-old's mother, Teresa, walked outside to meet him. Kelby looked at her over his shoulder and reached for his voice, which lives inside a big black computer dangling from his neck.

"Hi. Hello. I'm Kelby," it said in a robotic monotone as Kelby tapped a glowing button on the computer's touch-screen.

Teresa adjusted the neck strap holding the device, called a Dynavox. It's Kelby's "talker," she says, and it's programmed with hundreds of words and phrases Kelby uses throughout his day.

"You're going to get a neck burn," Teresa said, tucking the hood of Kelby's sweatshirt between the strap and his skin. She reached a finger to his ear to flick away some lingering wax. Kelby squirmed out of her reach, scrunching his face in disapproval. Teresa smiled.

Without the talker, Teresa said, she would hardly know her son.

Kelby, a sophomore at Kelly Walsh High School in Casper, was born with Down syndrome, a genetic disorder that, in Kelby's case, stunted his vocal cords and left him almost entirely without speech.

The Natrona County School District provides Kelby and special needs students like him with the devices they need to read, communicate and learn each year. Kelby's device, which is brand-new this school year, cost about $9,000, said Eric Freeman, assistive technologies strategist for the district.

The district spent $55,000 in federal funds to buy technology for special needs students this year. Technology can range from rubber grips to help students tighten their hold on a pencil to portable devices that transcribe speech into text for students who cannot type, Freeman said.

Such devices help students function in mainstream classrooms and interact with their peers in hallways, in the gym and on the bus, Freeman said.

Without them, students like Kelby would live in a different, more isolated world.

When he sees a school bus, Kelby's first instinct is to run.

As the bus approached Kelby's apartment one recent Tuesday, Teresa gripped the back of his hoodie. The bus groaned to a halt and Kelby walked fast to the steps.

Teresa waved. Kelby waved back from his window seat, flopping his hand backward like he was motioning for her to join him.

An assistant checked Kelby's seat belt as he fidgeted for his words on the talker.

"Please help me with my seat belt," Kelby's voice said.

Once at school, Kelby drifted through a flood of teenagers. He found a button to cue the Pledge of Allegiance on his talker and played it twice as he walked, pressing the speakers to his ears.

Repetition is comforting for Kelby, said Kendsey Collins, one of his special education assistants. Sometimes Kelby needs reminders to use his talker as a tool, not a toy, she said.

Kelby served himself in the cafeteria's food line - a breakfast burrito, milk carton and quick automated "thanks" to the server - and walked speedily to his first classroom of the day. He scooted into a chair, opened his milk and unwrapped his burrito.

"Heyyyyyy, Kelby," a voice said from the doorway.

Kelby looked toward the door at a woman entering the room, then back at his talker.

"Miss Elyse," he said.

Elyse Pick, a special education assistant, dropped her backpack at Kelby's feet and sat across from him at the table. Shreds of breakfast burrito clung to Kelby's hands and face. He tapped a few buttons on the talker.

"Can you help me?" he said.

"Could you try first, please?" Pick asked, handing him paper towels from a nearby dispenser. Kelby stood, dabbing at his face.

There is a lot Kelby can do on his own, Pick said. Often it takes a little encouragement to remind him.

Kelby reached an open hand across the table when Pick sat back down. Pick gave it a squeeze.

Teresa Watson knew Kelby's name long before he was born.

Her child would be Kelby if it was a boy, Kaylee if a girl.

Teresa, a single mother, didn't know of Kelby's Down syndrome until he was 6 weeks old, when a routine doctor visit for his worsening ear infections led to a chest x-ray and a DNA test. Kelby's rib cage grew wider instead of narrowing as his ribs neared his hips, and a DNA study showed what doctors feared: an extra chromosome causing the disability found in roughly one in every 700 babies born in the U.S.

Teresa watched Kelby grow. She celebrated as her friends' babies cooed, laughed and spoke their first words. Kelby aged and remained silent.

"We kept hoping as time went by, but nothing," she said.

Teresa tried sign language, but Kelby's fingers couldn't form the sometimes complicated letters and motions. She tried picture cards for simple phrases like "breakfast" or "dinner" and left them on the fridge for Kelby to point toward.

"I was like, 'This cannot be the only way I can communicate with him,'" Teresa said.

Then a speech pathologist at Kelby's elementary school suggested a device that could help Kelby talk. The first talker was heavy as a dictionary. For years it stayed at school, coming home with Kelby only during summers. Kelby's newest talker - his third since the district started providing them - is lighter and more powerful, she said.

"It's part of our life now," Teresa said. Kelby rarely removes the talker, except to eat or sleep. Even then it's never far from his fingertips; during lunch Kelby rests it gently in front of his tray. At night, he plugs it into the wall in the living room.

Kelby can eat on his own and dress himself, Teresa said. She helps with buttons and zippers and keeps the shampoo out of his eyes during showers.

Teresa and Kelby sat together outside their apartment one evening last week.

Letter by letter, Kelby typed an entire children's book into his talker. After every page, he pressed a button to activate the voice, which repeated it back to him.

They call it reading. It's what they do most of the time, Teresa said, unless Kelby wants to watch Star Wars, the movie that inspired much of his wardrobe and all of his pets.

The Watsons own a pug named Yoda and two cats, Leia and Vader.

Twice a week, Kelby and his classmates head out on the town. Tuesday, they loaded a bus to Wal-Mart.

Kelby sat across from Lauren, who sat in a wheelchair behind Dyson. MaKenzie, a sophomore, sat closest to the front of the bus, chatting with whoever would listen.

The four students were accompanied by as many special education assistants. Kelby stepped daintily off the bus, one hand on his talker, as Kendsey Collins looked on.

"All of us are limited by our language," said Collins, a special education assistant.

One of her jobs is to give Kelby the right words. She programs special phrases into his talker as Kelby learns them. Some phrases Kelby can use when he eats at restaurants: "I'm done," or, "I want more." Some describe body parts for when Kelby goes to the doctor. Others are for fun, she said, like, "I have so much freaking homework," or, "Peace, man."

"The devices are great, but the challenge is making them function," she said. Kelby is a success story in a way, she said, because he integrates the device into his life outside school.

Inside the store, Collins showed Kelby and Dyson an image of brown sugar.

"This is what we're finding," she said.

The goal is functional reading and comprehension of recipes, directions, grocery store signs, and the like.

"Not all high school students are great cooks," Collins said. "But they can follow a recipe. For our students, it's functional reading."

After school, Kelby's bus drops him off at Sarah Kludy's house. Kludy, a special needs care provider with two daughters of her own, has cared for Kelby since he was 5.

"He's like family," Kludy said.

Kludy's daughters, 7-year-old Katelynn and 4-year-old Madelynn, whom Kelby bottle-fed as infants, chatted happily as Kelby entertained himself pressing buttons on his talker while seated a couch.

Even on Kelby's rough days, when he's not feeling well or something went badly at school, Kludy said she still sees him happy.

"Having his talker has allowed him to feel like a big kid, like he's part of the conversation," she said.

Midway through Kelby's turn playing an interactive video game, Teresa's car rolled to a stop outside. Kelby raised his eyebrows and his mouth curved into a smile. He poked his arms through each of his sweatshirt sleeves and draped his backpack hastily over his shoulders.

He was ready to go before Teresa climbed the first step to Kludy's door.

Kelby laughed to himself inside the car as Teresa lingered to chat with Kludy. He tapped on the glass and rocked from side to side, making the car lurch in sync with his body.

Kelby will graduate high school, but not at the same time or under the same benchmarks as his able-bodied peers, Teresa said. His reading comprehension will probably never exceed that of an elementary school child's, and it's unlikely he will ever live on his own. Teresa will probably buy the talker - or something like it - for Kelby to use after he graduates.

For now, the device makes Kelby's life more meaningful — for him and the people around him.

"Even though we don't get to hear his voice," Kludy said, "we still get to know his soul a little bit."

___

Information from: Casper (Wyo.) Star-Tribune, http://www.trib.com

©2014 by The Associated Press. All rights reserved. This material may not be published, broadcast, rewritten or redistributed.