Eight-year-old Lewisville boy destined for blindness learns some new tricks


Eight-year-old Lewisville boy destined for blindness learns some new tricks

 

 

Jim Mahoney/Staff Photographer

Daniel Kish holds a blindfolded Zach Thibodeaux upside down and spins in a circle in an effort to disorient the 8-year-old. Kish, who is blind, is teaching Zach echolocation, the same method bats employ to see in the dark.

 

 

By MARC RAMIREZ

Staff Writer

mramirez@dallasnews.com

Published 19 June 2011 11:26 PM

 

Does anyone really like tiramisu? Why are there so many Chinatowns? These are the questions on the mind of an 8-year-old boy.

But early one June afternoon, a different puzzle was at hand as 8-year-old Zach Thibodeaux walked, blindfolded, down his suburban street, his white cane only partly guiding the way. Making intermittent clicks with his tongue, he traced the sidewalk, his instructor just behind.

He paused, unsure … then reached out with the cane and found one of the stout, stone mailboxes common in his Lewisville neighborhood.

“Good,” said Daniel Kish, founder of World Access for the Blind, placing a hand on the arched structure. “We don’t have mailboxes like these where I come from. These are brick bunkers.”

Last fall, Zach — who just finished second grade at Mary Immaculate Catholic School in Farmers Branch — was diagnosed with cone-rod dystrophy, a degenerative eye disease that will ultimately render him blind. This month, he spent several days working with Kish, whose 10-year-old organization, based in Long Beach, Calif., aims to teach the blind not just to be functional but to feel able to pursue their dreams.

As part of his training, Kish and his crew teach a disciplined form of echolocation — what bats use to “see” in the dark. By sending out sound waves in the form of carefully honed tongue clicks, Kish said, the blind can effectively sense what’s around them, taking acoustic imprints of their surroundings as waves echo back.

“It’s like putting clay into a mold,” Kish said. “The sound is taking the shape of the environment.”

Down the street, Zach — whose task was to note nearby objects — paused again.

“There’s something to your right,” Kish told him, guiding him back a few steps toward a rail-thin signpost. “You heard it after you passed it.”

Kish himself is blind, though you’d hardly know it to see the confidence with which he moves around. He’s hiked alone, mountain biked, gone solo-camping for days at a time. At 45, he travels the world, teaching and speaking about his craft.

Doing for themselves

We live in a visual society, where the idea of sound-oriented mobility is hard to envision. Kish’s training, then, is about more than getting around obstacles; it’s about overcoming them — as well as societal attitudes that put limits on blind kids’ potential.

“We see it a lot,” said Juan Ruiz, one of two instructors who work with Kish. “Blind people have things handed to them. If I say, ‘Where’s the trash can?’ — odds are somebody will say, ‘I’ll do it for you.’ That’s the reality of the world these kids live in.”

Kish also encourages risk — the willingness to suffer bumps and bruises en route to independence, an attitude he said parents must foster in their blind children. He wants to give students the skills to move about as freely as he does.

Advocates for the blind caution that not everyone can be as uniquely talented as Daniel Kish. Echolocation should not take the place of a cane or guide dog, they say — but used in tandem with those methods, it can be a valuable tool.

Austin software developer Nolan Darilek, blind since birth, said Kish’s training is almost martial arts-like in its discipline, unlike any he’s ever experienced. Until he began working with Kish, he’d consigned himself to striking objects with his cane, drawing attention as he gets around.

“I don’t want to bludgeon my way through life,” said Darilek, 30. “I want to move through it gracefully.”

Many blind people develop some system of auditory navigation, but few have perfected and contemplated it as much as Kish, who lost his sight to retinal cancer as an infant. His prosthetic eyeballs are as lifeless as a wax figure’s.

Still, he said, “my mom’s biggest goals were that I get out of the house and pay taxes. … In order for me to be like everyone else, I had to be treated like everyone else.”

The clicking came as naturally as blinking, he said, and he recalls a childhood free of limitations. He ran around with other kids and rode a bicycle, even joining other kids in a sort of bike destruction derby.

“I was fearless, and I had the best bike — a BMX,” Kish said. “We’d go to an open space and all crash into each other and see who was the last one standing. These days, there’d be some old biddy coming out and telling us to stop because someone was going to get hurt.”

Get hurt he did. Occasional run-ins with slides or poles required medical attention. But he was a regular kid, and he would go on to do his thesis on echolocation for a master’s program at California State University, Los Angeles.

He’d planned on being a psychologist, but frustration over how few blind people moved as freely as he did drove him to want to do more. In 2001, he launched World Access for the Blind.

Kish’s goal is to rewire the brain to rely on sound and touch, rather than sight, to construct images. More than 500 blind or low-vision students in 18 countries have gone through his program, which urges families to be active supporters.

“There are people who want echolocation as a miracle cure, relieving them of responsibility,” Kish said. “In some ways it is magical. You’re freeing the brain — but it has to be supported.”

Zach’s sight has worsened since his diagnosis: By early last month, he’d lost 80 percent of his sight; now he can see just two feet in front of him. But he’s excelled at Braille, and his mastery of the abacus has revived his math prowess.

After his mother, Johanna Uek, read about Kish in Men’s Journal, she arranged to bring Kish to Dallas to work with Zach and to conduct a soccer clinic for local blind and low-vision children.

“This is going to help Zach be more social,” Uek said. “I want him to know — you gotta deal with what you got.”

Zach’s training included outdoor exercises in which Kish positioned objects — a cutting board, a Styrofoam plate — near, or away from, Zach’s blindfolded face to develop his perception of them as he clicked.

Now Kish held the plate about a foot to Zach’s left. “Tell me which side it’s on,” he said.

Zach clicked in either direction, then reached to his left and found it there. Before long, he was getting the hang of it.

“He wasn’t able to hear the plate at all yesterday,” Kish said, after they were done. “That’s how quickly this can develop.”

But using it to get around is something that will take time. Along with their neighborhood walk, Kish had Zach practice getting around a roller rink, a car-filled superstore parking lot, the labyrinth of a college campus building.

Darilek, the Austin software engineer, said Kish’s methods have inspired him to consider activities thought to be limited to sighted people, even as some find it hard to imagine.

“That’s one thing I’m encountering with my friends. I tell them I want to ride a bike, and they’re freaking out about that. … Maybe it’s a horrible idea. I hope not. But to live your life a slave to fear and horrible things that might happen to you is not the way I want to live.”

‘The brain lights up’

Zach and 14 other blind and low-vision kids attended Kish and Ruiz’s soccer clinic at a Farmers Branch park on a hot afternoon. The balls were filled with rattling beads that allowed players to track them as long as they kept rolling.

Afterward, as worn-out kids and families gathered for hot dogs in the shade, Zach described what he knew about echolocation and the technique behind a good click. “The brain lights up when it gets all that information,” he said.

And a smile as you click produces one that is higher-pitched, he explained, reaching greater distances. Still, he knew he had a long way to go. “I can’t bike yet,” he said. “I’d freak out.”

Kish had already made a mental picture of the park on this, his first visit, using barely audible clicks and his cane to get around, occasionally walking off to take calls on his cellphone. Now, sitting nearby, he asked where the ice chest was, because he could use another bottle of water.

He got up to go get it, but as he did, he found someone had already gotten one for him.

ABOUT THIS SERIES

Eight-year-old Zach Thibodeaux is going blind, the result of a condition called cone-rod dystrophy, a degenerative disease for which there is no cure. In “Zach’s Journey,” staff writer Marc Ramirez and staff photographers are chronicling the Lewisville boy’s passage into darkness.