A four-day conference shows
parents how to enrich the lives of
their deaf children in HawaiiBy Treena Shapiro
State a leader in infant hearing tests
Star-BulletinFirst, you grieve.
That's what Beth and Jimmy Tokioka did when they learned that their son Justin Kapono, "Pono," was profoundly deaf.
They were devastated, and dealing with the diagnosis was like going through a death in the family, Beth Tokioka said.
"It's a normal grieving process. You get angry and then you realize that the longer we wait, the longer he suffers," she said.
"You just have to get on with it," her husband said.
But "getting on" involves more than just acceptance. For any parent in this situation, it requires changes with far-reaching consequences, from learning a new language to communicate with their child, to difficult decision-making, especially in regard to education.
State and federal laws mandate that all special-needs children be provided with a free and appropriate education. Within the Hawaii Department of Education, that could mean a regular public school classroom with an interpreter, a special education classroom or the Hawaii Center for the Deaf and Blind.
On a recent day the Tokiokas of Kauai were among a group of parents at the center to learn about opportunities for deaf children, part of an annual four-day Family Learning Vacation co-sponsored by the HCDB and the Gallaudet Regional Center.
Closer look
At first, the preschool room seems ordinary. Pono and the other kids play dress-up, work with plastic tools, climb on a play structure and push toy cars around. With all the pounding and banging, it isn't even quiet.But eventually, the absence of toddler chatter becomes noticeable. In some of the children, a throaty hum takes its place. Others use hand gestures rather than their voices to communicate. Suddenly, hearing aids seem more obvious.
The children's parents, meanwhile, are being introduced to different perspectives on caring for deaf children and provided the opportunity to bond with others in the deaf community. Parents learn about deaf culture, meet deaf role models, practice American Sign Language and hear about educational opportunities.
This is the Tokiokas' second time at the conference. Last year they were struck by the realization of how much communication and support the child needs from both parents. A panel of deaf children talked about how frustrated they were because their parents couldn't -- or wouldn't -- learn how to communicate with them.
"They didn't feel a part of their family," Beth Tokioka said.
The Tokiokas had no reason to suspect that their son would be born deaf. There was no family history of deafness on either side. Beth Tokioka had remained healthy throughout her pregnancy. Her husband had no serious illness during his first year.
But instead of babbling like other babies, Pono made a constant humming sound. At 10 months his parents suspected he was deaf and at 1 year test results confirmed their fears. No test has been able to determine the cause of Pono's hearing loss.
Placement test
The Tokiokas will have help in determining the best place for Pono. Each special-needs child in the public school system is given an annual Individualized Education Program in the "least restrictive environment" for that year. Parents, educators and others team up to make the decision.Placement is determined case by case, depending on the child's current needs -- some even end up going back and forth between deaf and mainstream schools -- but educators have their own opinions about the definition of "least restrictive environment."
Public school administrators advocate mainstreaming deaf students into a regular classroom.
"We'd like to see the kid at their own school and mainstreamed if it's appropriate," said Harvey Ouchi, an educational specialist at the Department of Education Office of Accountability and School Instructional Support.
When placed in a mainstream classroom, students are spared the commute to a special school and get to spend more time with their families, Ouchi said. In addition, mainstreamed students are placed with their peers."In a real situation, you have to deal with people that can talk and hear," he said.
But educators from the Hawaii Center for the Deaf and Blind and Gallaudet Regional Center argue that being in a classroom with hearing children may be the most restrictive environment.
"A really restrictive environment for a deaf kid is to be there and not be able to communicate with anyone but an interpreter," said Dr. Jeanne Prickett, HCDB administrator. "And no matter how good the interpreter, the deaf child does not receive the same quality and quantity of information that the hearing students receive."
At HCDB, everybody communicates through American Sign Language. That's the language used in job interviews for all employees but the custodial and cafeteria staff, and even they are given ASL classes to learn how to communicate with the students, Prickett said.
On the other hand, 68 percent of mainstreamed deaf students are one of one or one of two in a school who are deaf, said William McCrone, dean of the School of Education at Gallaudet University, a university for the deaf in Washington, D.C.
Some educators say this invalidates the argument that mainstreamed students are with their peers. Hearing children may not be a deaf child's peers if they can't communicate with him, said Jan Fried, an assistant professor and coordinator for the ASL/Interpreter Education program at Kapiolani Community College.
Fried added that it's odd for a young child to have an adult around all the time, but that's what happens to mainstreamed deaf students who require a sign language interpreter to stay with them throughout the school day. For some, the interpreter is even present during recess.
"That goes a long way in squelching a person's desire to socialize with their peers," she said.
Difficult transition
Ami Tsuji-Jones, 34, a member of this year's deaf panel, said she had trouble when she was mainstreamed in intermediate school. Deaf students weren't allowed to use sign language, which is often their first language. Instead they had to lip read and speak orally. Only 30 percent to 40 percent of all speech can be lip read, Tsuji-Jones said.So the deaf students went behind their teachers' backs to sign, she said.
A teaching assistant at the deaf school, Colleen Matusof, also 34, had a similar experience. Signing wasn't allowed until she was in high school, she said. Matusof was in a regular classroom all day with an interpreter and notetaker. She was always behind, getting the translation after the hearing people had moved on to a different topic, she said. "It was hard to catch up."
In college, Matusof found that her mainstream education hadn't prepared her for college English classes. Graduating was difficult, she said.
Sometimes a teacher spoke while writing on the board, making it impossible to lip read. Matusof ended up having to be tutored after school, which meant she lost out on time to play.
And then there was the oral communication. Matusof, who has some hearing, said friends and relatives made fun of her when she spoke.
As students separated from the deaf community, Matusof and Tsuji-Jones said they suffered from low self-esteem.
They said they didn't learn about their identities within the deaf culture until they entered college. Now both remain involved in the deaf community, professionally and socially."The deaf community understands (me)," Tsuji-Jones said.
Mainstream education has changed since Tsuji-Jones and Matusof were in school. Cindy Nash, an itinerant teacher for the hearing-impaired in the Windward special education division, said a student's need for signing is determined during the IEP team meeting and no longer is restricted in elementary school. Some mild to moderate hard-of-hearing students use hearing aids or lip read instead. Others need, or want, to sign.
According to Nash, the perceptions of sign language have changed. It has become respected as a language not just for the deaf, but for people with other disabilities, such as autism.
"A lot of the teachers are really open to it because it's the only way for them to communicate with the multiple handicapped," she said.
Nash noted, however, that most severely or profoundly hard-of-hearing students are placed at the Hawaii Center for the Deaf and Blind.
Currently, the Tokiokas plan to keep Pono in the elementary school near their home on Kauai. Pono is in a special education preschool class and is mainstreamed in with kindergarten students for certain activities, such as those involving gross motor skills.
Since he entered the school at 3, his parents have noticed dramatic improvement in his communications skills.
Between the ages of 2 and 3, Pono was a frustrated little guy, Beth Tokioka said. He didn't have enough sign language to express himself and couldn't understand what his parents were trying to say. Then when he entered preschool he had language all day long, something he missed while at a baby sitter or day care.
Hearing loss is classified by the loudness of the sounds people can hear: Loudness levels
Source: American Academy of Audiology "Audiogram of Familiar Sounds"
"Now we can pretty much explain just about everything to him," Beth Tokioka said. His frustrations are now more along the line of what every toddler experiences. "It's not so much that he's cut off from the world," she said.
Now the Tokiokas consider themselves in a good position. Pono is doing well in his classroom setting, and it doesn't occur to him that he may have limitations.
"He doesn't think that he can't do anything that any other kid can do. In fact, he thinks that he can do more than what other kids can do," Jimmy Tokioka said.
Long road
Challenges still lie ahead, though. Resources are limited on Kauai. There are few deaf children Pono's age on the island, perhaps only five, and Pono, now 4, is the only deaf child in his class that does not also have a learning disability.The Tokiokas had difficulty getting him a speech therapist.
Now they aren't sure if the Department of Education will supply an interpreter fluent in ASL if Pono is placed in a mainstream classroom, because there is no job classification for an educational interpreter in Hawaii's elementary and secondary schools.
"That's something that we're going to have to fight for because if that doesn't happen then that closes a door for him," Beth Tokioka said. "He would be lost without a signer to interpret for him."
Without a job classification, there are no set qualifications to become an educational interpreter. By law, federal and state-certified interpreters make $30 to $40 an hour when hired free lance. The lowest classification has a wage of about $20 an hour.
Without a job description to set minimum qualifications, some interpreters could have had as little as one class in sign language and may not be able to convey information in the most effective and efficient manner, Prickett said.
Even if the job classification is created, it's hard to recruit interpreters to the outer islands.
The Tokiokas' other option is to send Pono to the HCDB.
"It's really hard because we love Kauai and we want to stay in Kauai, but eventually we might have to face the decision that his best education is here," Beth Tokioka said.
Hawaii is one of the first states to require universal hearing-loss screening in newborns. State a leader in hearing-
loss tests for infants"We can be considered a leader in the field," said Judith Mason, coordinator of audiology services at Kaiser-Permanente.
Kaiser and Kapiolani Medical Center started performing the tests in 1992 and the rest of the hospitals followed suit, Mason said.
Now all major hospitals in Hawaii have the equipment to perform the screening, and all smaller hospitals also have access.
The screening is quick and easy, often performed at the mother's bedside. In the Otoacoustic Emissions Test, a spongy probe is inserted into the ear and a tone is emitted. In a normal ear, a harmonic or similar sound will echo. For the Automated Auditory Brainstem Response, the newborn wears headphones and three electrodes are attached to the scalp. The tests take five to 20 minutes.
However, it's important to note that significant hearing loss can occur at any time, so a newborn with normal hearing at birth could suffer hearing loss later. Unfortunately, there are no specific warning signs to look for until the child is 18 months to 2 years old. At that time, parents may notice a lag in speech and language development.
"If a child is not saying anything at age 2, then the alarms should start really going off," Mason said.
Since parents are with their child all the time, some may pick up on cues the child's doctor may miss. Any parents who suspect their child may have a hearing problem should have the child screened by a doctor.
Treena Shapiro, Star-Bulletin
Center’s enrollment rebounds
By Treena Shapiro
after mainstreaming of
students took toll
Star-BulletinLike other deaf schools across the nation, the Hawaii Center for the Deaf and Blind faced a drop in enrollment after federal law in 1975 mandated that public schools provide free and appropriate education for all students with disabilities.
In the '70s, enrollment was about 200 students, said Dr. Jeanne Prickett, who became administrator of the center in 1996.
With the new federal laws, many students were taken out of the Department of Education's school for the deaf and mainstreamed into regular public schools, and by the late 1980s, the center's enrollment had dropped to about a dozen students.
In the early 1990s, the school was in danger, with less than 10 students attending. But the situation is turning around.
"I think that school districts are starting to realize that students have to be given an option with the best fit," said Jan Fried, coordinator for the American Sign Language/Interpreter program at Kapiolani Community College.
For the center, this means that enrollment numbers are on the way back up. Enrollment has been holding steady at about 75 students since Prickett's arrival.
