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By DAVID HUNN, Californian staff writer
Monday February 03, 2003
On the slow, painstaking path to independence, a tiny disabled Argentinian boy took his first, giggling steps Monday without the tether of another human clutching his armpits from behind, holding him up.
Juan Cobeñas came to Sequoia Middle School from South America Monday with his parents, Elena Dal Bó and Ricardo Cobeñas, to make use of breakthrough teaching techniques developed in Bakersfield for disabled students.
Juan giggled, cackled and peddled around the south Bakersfield schoolyard in a brand-new Pacer gait trainer -- a modified rolling walker that holds his weight while allowing him to decide on his own where to go and how to get there.
His mother and father followed closely behind, whispering encouragement in Spanish:
"Felicitaciones, felicitaciones," Dal Bó said.
"Bien, bien," Cobeñas said.
Linda Bidabe, founder and author of Mobility Opportunities Via Education, or MOVE, tested Juan and then strapped him into the walker, constantly teaching his parents how to get him in and out as she worked. Juan pushed against her, and as she struggled to affix the buckles, a smile spread so widely across his face, his cheeks bunched up at the sides.
Bidabe has created a program that she says is unique in the world. It addresses the needs of children who cannot move on their own because of brain damage caused by disease, trauma or birth defect, and pushes to train them first in what they most want to do, and, second, in life skills. It has expanded to 13 languages and 26 countries, Bidabe said, but not to Argentina.
Juan came to America for Bidabe, and MOVE.
Daily home therapy coupled with constant movement in the gait trainer will teach Juan to extend his legs without tilting his hips; it will teach him to use muscles in his hand and arm that he hasn't used before, giving his tight, contracted fingers, hands, legs and toes a touch of freedom.
"He needs to be standing and running and playing as much as any other child at his age needs to be standing and running and playing," Bidabe said. "Which is hours and hours at his age."
Four years ago, Juan's mother, Dal Bó, was searching for an answer to the devastating problems her child faced.
Juan couldn't stand. He couldn't walk, talk, signal with his hands or do any activities that a child must do to function.
Juan has cerebral palsy, a disorder that shuts down the motor strip in the brain and decimates the ability to control one's muscles.
The Argentinian government saw his condition as permanent and hopeless, his mother said. Therapists said he would never walk.
Dal Bó said children with severe disabilities are not viewed as functioning humans.
"The child is well-cared for: clean, given his medicine, warm, and perhaps entertained," Dal Bó said.
"If he can't do what a normally developing child can, then he's not worth it," she said, explaining common medical practice in their home country.
So she went searching for something that could help. In a magazine, she saw an advertisement for equipment that would be suited for Juan.
But instead of getting equipment, she found out about MOVE and the book Bidabe wrote to help parents keep their children healthy.
Far from hopeless, MOVE suggested Juan could learn to stand, walk and even play soccer, as he has long wished.
Now, Juan's prognosis looks promising.
"My minimum dream for Juan would be that he could walk, using a walker... and determine any direction he wants to go," Bidabe said. "I want him to be able to go where things are kept, communicate on a variety of levels, put a sentence together with a computer."
"To me that is life. To be able to express your opinions. To be able to do things other people can do. To just be part of life. To just be like everybody else."
During his weeklong stay in Bakersfield, Juan's parents hope to get to a therapy program, Mastering Abilities Riding Equines, that uses horses to teach disabled children how to sit up straight and hold their heads up. They also plan to visit the Kern Assistive Technology Center for an explanation and demonstration of computer-aided communication.
Dal Bó just hopes to get MOVE's message out to others, she said as Juan pushed his gait trainer back into the room, and his father lifted him into a wheelchair. Cobeñas rubbed his stomach and chest.
"Bless his heart, he's done out," Bidabe said as Juan's head fell to the side and a small, tired smile turned up his lips.
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