Diligence, devotion pry open door to communicate

06/25/03

ANDY DWORKIN

Sabrina Gomez was 11 when sickness swelled her brain, destroying nearly every tool she had to connect to other people.


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She spent the next decade in a wheelchair, unable to speak or will anything to move but her mouth and eyes. Trapped in a statue, no one knew whether the infection had damaged her thinking or just the tools to share her thoughts.

Gomez worked wordlessly to be heard. The occasional arch of an eyebrow, the winning smile at a joke, signaled a young woman with something to say. She lived among nurses and caregivers willing to listen. But no one really understood.

Then she met Susan Livick.

Focused and caring, Livick is a speech pathologist for those who can't speak. Livick was a student assistant a decade ago when she met Gomez and other severely disabled children at Providence Child Center in Portland. Ever since, Livick knew she had to get back to Gomez.

"I just thought, 'There's so much these kids have to say,' " Livick said. "I just have to get that out."

After training to be a language pathologist and working for several years, Livick quit her job to get back to Gomez's home at The Center for Medically Fragile Children at Providence Child Center, the Northwest's only full-time nursing home dedicated to children.

The center didn't have enough money to hire her, so Livick found a grant to let her work there, starting one year ago.

Soon, some of the center's children started sharing thoughts that lay silent for years.

The process uses two kinds of tools. One is Livick's brain, trained to figure out at what level the center's children -- who have injuries ranging from birth defects to car wrecks -- can think and communicate. As part of that job, Livick has to discover what part of their bodies the children can generally control, whether it's their neck, a finger or just their eyes.

"I tell the kids, 'Come on, you've got to show me how smart you are,' " Livick said.

Then she must track down, and figure out how to pay for, a variety of different machines that let the children channel those willed movements into action and speech.

"These kids weren't in control, and this gives control back to them," Livick said.

A photo album tells success stories: A girl in a wheelchair sits with an orange ball by her head. The ball connects to a switch, which Livick hooked to a machine that automatically blows soap bubbles. The girl can't hold a bubble wand. But by tilting her head, she can now blow bubbles. A board across two wheelchair arms holds a washcloth, hairbrush and other personal items. Soft pads stick to each object and connect to an electronic box called Voice Pal. When the mute girl touches the hairbrush, for instance, the box says "Do my hair." For the first time, she can tell the nurses what she wants. Four blue plastic paddles sit in a row. Livick has recorded parts of songs in each. She'll sing for the children, and at the right moment, they can hit a button to chime in on the chorus. Now they can sing along with her.

"Now these kids are actually playing, and that was one of my goals," Livick said. "We know that developing kids learn through playing."

Ambitious efforts Livick has especially ambitious goals for several of the center's most mentally capable residents, including the 21-year-old Gomez.

Shortly after the two started working together, Livick realized Gomez was lifting her left eyebrow to say yes. It was a double breakthrough. The raised brow showed that Gomez could control part of her body reliably and quickly. And it showed she could understand and answer yes-or-no questions, which is "a high cognitive concept," Livick said.

Sharing that knowledge let the center's nurses and volunteers ask Sabrina how she felt and what she wanted, though in an involved series of yes-no questions.

Livick wanted more.

She came across the Cyberlink, a machine made by Andrew Junker, an Ohio inventor, that seems straight out of science fiction.

Three plastic sensors attach to the forehead with a headband and feed through wires into a computer. The sensors can read electric activity in the brain and nerves of the face. One sensor reads eye movement. A second reads motion of facial muscles, such as the jaw. The third reads brain waves, like an EEG.

Junker's software translates the tiny signals into commands for a computer cursor. For instance, eye motion can control left-and-right movement, and jaw clenching can act the way a mouse click does. The controller and software can work with many common computer software programs, including word processing and e-mail programs.

Military origin The device was developed with military funds to be a hands-free mouse. Junker adapted it for adults with Lou Gehrig's disease, Parkinson's and other illnesses that steal muscle control.

Now, he has a federal grant to test the device on people with severe disabilities in California, Pennsylvania and at the Providence center.

When Livick first hooked Gomez up to the Cyberlink, the result was amazing. As Gomez's mother watched, Livick put the headband on Gomez and explained that she was going to play the computer game Pong. By slightly clenching and relaxing her jaw, Gomez could move a computerized paddle up and down.

After practicing with the cursor for a minute, the computer serves the first ball toward Gomez's paddle.

She hit it on the first try.

Soon, she was figuring angles and hitting volleys reliably.

Livick next tried Gomez on a maze program. Her eye movements added a left-right direction to her jaw's up-and-down cursor control.

Gomez solved her first maze in 38 seconds.

Livick tried the game that night at home. The first maze took her 32 seconds.

"I said, 'Oh my God, she has normal cognitive skills,' " Livick said. "That was the life-changing experience for me."

Icons, emotions Gomez now is regularly practicing controlling the cursor, and Livick is setting up a new program that will let her communicate broadly. The computer will hold screens of labeled icons, each of which signals a message. By clicking the cursor on labeled body parts, for instance, Gomez can say whether her neck, foot or hand hurts. By clicking on emotion icons, she can say whether she is happy, sad or bored.

Some day, Livick hopes, Gomez will graduate to working just with words, perhaps even reading and writing with the aid of the device.

Livick has asked Gomez's insurance carrier to buy her a Cyberlink and a computer. The ones she has been using are donated for research and shared among several children. It's not clear whether the money will come: The Cyberlink costs $2,000 and the computer $11,000. But Livick says she often has trouble getting money for the $150 touch switches other children use to communicate.

After finishing a game of Pong last week, Gomez answered a few questions about her work with the computer and with Livick.

Does she like the Cyberlink? Gomez looks to her left. A "yes."

Does she like working with Livick? Gomez is still. No answer.

Livick leans in. "Do you like working with me?" she prods.

Gomez smiles broadly and looks left. A big yes.

Watching Gomez, the center's activity coordinator, Pamela Heman, smiles, too. She's very pleased that people finally are figuring out how to understand what Gomez wants to say.

Heman also wonders what personality glows inside the broken bodies of the center's other children. The blind children, especially, show no obvious clues to what lies within, she says. They could have low mental ability. They could be geniuses. They could be just plain kids.

Heman states the problem in seven words: "What if Helen Keller had cerebral palsy?"

Livick answers without pausing.

"I'd love to take that on." Andy Dworkin: 503-221-8239; andydworkin@news.oregonian.com



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