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Program a boost for deaf, blind boy's family
A little-known program at Western Oregon University that began almost 40 years ago and served as a research model for television's "Sesame Street" recently received a $10.5 million grant, the largest award in its history.
But in addition to state and national work on behalf of deaf-blind youths, the Teaching Research Institute, housed in Todd Hall at Western, also has played a large part in helping out the short but difficult life of a Monmouth child and his family.
"There are about 100 or more causes of deaf-blindness," said John Killoran, the center's national activities coordinator, "and about 90 percent of those deaf-blind children have additional disabilities."
"What we do for a child in Monmouth is what we do nationwide," he said.
That one child is Mathew Smith, 6, a student at Monmouth Elementary School. He is among the less than 1 percent of the nation's youths -- from birth through age 21 -- who are born or become deaf and blind.
Mathew's mother, Stacey, said her son was born deaf and blind and with several other conditions considered part of the CHARGE Syndrome of eye, ear, heart, growth and other birth defects. (CHARGE is an acronym for Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities and Ear abnormalities and deafness.)
"We didn't know anything was wrong with him until five days after he was born, when he was diagnosed with a heart murmur," Smith said.
"It has been a struggle, especially during his first and second years of age," she said. "He had nine surgeries in that time, to repair his heart, his lip and palate and other parts of his body."
She credits several workers who receive training from TRI to help the Smith family cope with Mathew's disabilities.
She said the institute identified Mathew as a deaf-blind student in need, then provided schooling for people such as his special-education teacher, hearing specialists and others who are trying to help him communicate better.
"Last year we worked very closely with a woman from D-B Link (part of the information and referral arm of the consortium) who helped us to use a system for Mathew to learn to communicate through picture-association," she said.
She said Mathew also has an "intervener" provided by the Central School District who works with Mathew each day he is at school.
"She works one on one every day, getting him ready for physical education, in and out of his wheelchair, when he gets fed," Smith said.
"She is there every day to help interpret his world for everyone else around him."
A little-known program at Western Oregon University that began almost 40 years ago and served as a research model for television's "Sesame Street" recently received a $10.5 million grant, the largest award in its history.
But in addition to state and national work on behalf of deaf-blind youths, the Teaching Research Institute, housed in Todd Hall at Western, also has played a large part in helping out the short but difficult life of a Monmouth child and his family.
"There are about 100 or more causes of deaf-blindness," said John Killoran, the center's national activities coordinator, "and about 90 percent of those deaf-blind children have additional disabilities."
"What we do for a child in Monmouth is what we do nationwide," he said.
That one child is Mathew Smith, 6, a student at Monmouth Elementary School. He is among the less than 1 percent of the nation's youths -- from birth through age 21 -- who are born or become deaf and blind.
Mathew's mother, Stacey, said her son was born deaf and blind and with several other conditions considered part of the CHARGE Syndrome of eye, ear, heart, growth and other birth defects. (CHARGE is an acronym for Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and/or development, Genital and/or urinary abnormalities and Ear abnormalities and deafness.)
"We didn't know anything was wrong with him until five days after he was born, when he was diagnosed with a heart murmur," Smith said.
"It has been a struggle, especially during his first and second years of age," she said. "He had nine surgeries in that time, to repair his heart, his lip and palate and other parts of his body."
She credits several workers who receive training from TRI to help the Smith family cope with Mathew's disabilities.
She said the institute identified Mathew as a deaf-blind student in need, then provided schooling for people such as his special-education teacher, hearing specialists and others who are trying to help him communicate better.
"Last year we worked very closely with a woman from D-B Link (part of the information and referral arm of the consortium) who helped us to use a system for Mathew to learn to communicate through picture-association," she said.
She said Mathew also has an "intervener" provided by the Central School District who works with Mathew each day he is at school.
"She works one on one every day, getting him ready for physical education, in and out of his wheelchair, when he gets fed," Smith said.
"She is there every day to help interpret his world for everyone else around him."
