Deaf Today: Early intervention key

July 6, 2006

Early intervention key

From: Myrtle Beach Sun News - Myrtle Beach,SC,USA - Jul 6, 2006

Outreach services assist children with disabilities

By Jan A. Igoe
The Sun News

When Kayla Kaufman was about 3 months old, Deneen Kaufman noticed that her daughter wasn't grabbing for things. Her eye sometimes fluttered and didn't look quite right. "The doctor said she had no optic nerve. He said she'd be blind," Kaufman said. "So we took her to Charleston."

Kayla was diagnosed with septo-optic displasia, a rare disorder that impedes normal vision because the optic nerve hasn't developed enough to transmit light to the back of the brain. Now 27 months, she can only see about eight feet away, but with the help of adoring parents and specialists from the S.C. School for the Deaf and the Blind Coastal Regional Outreach Center, Kayla's made incredible progress through early intervention.

There was no such thing as early intervention for children with hearing loss or vision impairment when Joan Harucki, 62, was a child. For the most part, there was isolation and pity.

The vice president for the Eastern Carolina Association for the Deaf was the only deaf child among hearing siblings and parents. Although never confirmed, the cause may have been exposure to German measles during her mother's pregnancy.

Speaking through a sign-language interpreter at the golf fundraiser at Eagles Nest to benefit Coastal Outreach Services for the School for the Deaf and the Blind June 24, she commented on how much better off children with disabilities are today.

Harucki recalled the isolation she often felt, wondering what her family was discussing at the dinner table. Outside her home, when she'd ask her mother what people around her were saying, "I'll tell you later" was the reply.

"I felt left out," said Jean Holloway, who is also deaf, through an interpreter. "My family never learned to sign with me. I was left alone a lot and just got used to it."

Unable to communicate her frustration, Holloway remembers throwing tantrums as a young child, which embarrassed her mother. "It's better now; they teach parents to communicate with children."

"The earlier we get them, the better," said Jackie Powell, early intervention service coordinator for Outreach and BabyNet, South Carolina's interagency system to assist families of young children with developmental delays. "We go in and do an assessment to figure out where the child is. Early intervention is from birth to 3 years old." Specialists started working with Kayla when she was 6 months old.

"I assign a parent advisor. Sometimes they're very confused," Powell said. "We find them help deciphering medical terms and encourage parents to be their own advocates." Children are usually referred by doctors and may require speech, occupational (for fine motor skills) or physical therapy.

About 34 families receive early intervention through the S.C. School for the Deaf and the Blind Coastal Outreach Services in Conway, serving Horry, Georgetown and Williamsburg counties. It's one of six satellite centers throughout the state.

Director Dorothy Bambach says there are myriad ways outreach can assist families. "Babies who are blind, for example, our role is to help them feel trust, be secure in their environment to start exploring," she said. "It might just start with the world outside the playpen - it's all about mobility. For a deaf baby, [our emphasis] would be communication."

Bambach said audiologists can fit children as early as 6 months of age with hearing aids, and some children receive Cochlear implants before their first birthday.

"We listen to parents' questions about the future. Often time, parents go through stages of denial and grieving. We realize that and help them through it," Bambach said. "We work equally with the parents."

Carol Mabry Garrett, vice president of Outreach Services and Strategic Planning, said the six outreach centers provide thousands of services and dispatch interpreters all over the state.

Deaf people need a way to communicate with their doctors, understand a sales transaction with a car dealer and stay abreast of the world. Harucki recently attended a disaster-preparedness session sponsored by the Red Cross and Horry County to inform the deaf community where to turn when a hurricane is approaching - potentially lifesaving advice that hearing people take for granted.

Mabry Garrett said she's been involved with the deaf community since middle school, when she volunteered to work with kids with disabilities. She befriended a hearing-impaired boy who was misdiagnosed as profoundly retarded. "I got close to him and followed his life. He has a family now," she said.

Harucki married a deaf man, and both her children are deaf, but family communication couldn't be better. "My daughter has a master's in vocational counseling. A lot of parents don't understand that deaf people can go to college," she said. "Deaf and hearing are equal."

Kayla will never have to worry about parents who aren't behind her 100 percent. Powell says they'll continue to work with her in the home and at her church daycare center. Her progress will be assessed every six months and a new progress plan developed every year. "The most important part is what parents do when we're not there," she said. "You can tell who follows through, absolutely."

As Kaufman watches her daughter play like any carefree 2-year-old, she's sure of one thing. "Kayla sees more than anybody ever imagined she could see," her mother said. "We've been truly blessed."

Deneen Kaufman

Contact JAN A. IGOE at jigoe@thesunnews.com or 626-0366.