Dec. 11, 2003

Families of deaf-blind children find support at retreat

Not long after triplets Jackson, Nate and Josey were born into the Bucker family, parents Joe and Becky began to notice young Jack wasn’t tracking objects with his eyes the way Nate and Josey were. He wasn’t responding to sounds as well as his siblings, either.

Jackson, born with cerebral palsy, was diagnosed with deaf-blindness, a condition which affects nearly 11,000 children nationwide, according to data collected by the National Technical Assistance Consortium for Children and Young Adults Who Are Deaf-Blind.

But as the Bucker family prepared for a weekend getaway, Becky Bucker recalled, "Delaney said ‘I don’t know any other kids like Jack.’" Becky assured her she would meet them that weekend.

The Buckers recently took part in a Deaf-Blind Family Learning Weekend sponsored by Indiana State University’s Blumberg Center and its Indiana Deafblind Services Project. Twelve families with children who are deaf-blind took part in the weekend event at Bradford Woods, an outdoor retreat near Martinsville, Ind. In all, 30 children – those who are deaf-blind and their siblings – and 24 adults participated.

Participants said the camp outing offered a support group setting by bringing together families who shared the common challenges posed in raising children with the dual sensory impairment.

Becky Bucker said it helps Jackson realize there are others out there like him and, "It helps with my other children … It gives them an idea of the other kids out there. And we’re doing something fun as a family. We’re not going to a doctor’s appointment, we’re not at a clinic; We’re just going to get away."

While ISU special education and psychology students interacted with children who are deaf-blind and their siblings, parents participated in morning workshops with Dr. Lauren Lieberman, an expert in adaptive physical education and inclusion strategies for deaf-blind children.

Lieberman, associate professor of adaptive physical education at the State University of New York Brockport, said the biggest challenge to integrating deaf-blind children into society is attitudinal.

"A person who is a teacher, no matter how sensitive they are, might not believe that a child who is deaf blind can bat a ball, or ride a bike or swim in the deep end," said Lieberman, who has been working with children who are deaf-blind for nearly 15 years.

Communication is another challenge. With fewer than 300 children and youth who are deaf-blind reported in Indiana, few people are familiar with the tactile sign language. But the deaf-blind family weekend brought some of them together.

During the afternoon activity session, Lieberman introduced families to games like body bowling, adaptive baseball and tactile twister to show ways families could participate as a unit in an activity. Bucker said families learned "We can still be active and have fun and get our kids involved, even if they’re in a wheelchair."

For ISU student volunteers the weekend was an eye-opening experience.A handful of Indiana State students had volunteered for the deaf-blind family retreat in the past. Beth Browning was participating for the second time.

Browning, a senior speech language pathology major from Shelbyville, added the weekend provided an invaluable training opportunity.

"It’s a really good experience for me as a college student to be exposed to students with dual disabilities and find out what life is like for them so I can go out in the future and do my job better," she said. "It’s a great experience overall for the college students to be involved."

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Contact & Writer:
Mark Gibson, Public Affairs, (812) 237-3790, devgibso@isugw.indstate.edu

ISU Public Affairs:
(812) 237-3773 or http://isunews.indstate.edu