Wanting to be heard
For parents of deaf children, it’s all about choices and chances
Sunday, January 21, 2007
When Linda Streck gave birth to her third child, a girl named Katie, all she saw was a healthy, happy baby. In fact, she was convinced that a routine hearing screening when Katie was 9 months old would show nothing at all.
What it showed, instead, was that Katie had a profound hearing loss.
"At one minute I thought she was a perfectly normal baby and now she's not," says the Schaumburg mom. "For nine months I thought I was talking to her."
Streck wasn't totally inexperienced with this particular disability, though. Her oldest daughter, Meghan, also has a mild to moderately severe hearing loss. It was this family history that led to Katie's hearing test in the first place.
Like all parents of deaf or hearing-impaired children, Streck faced many choices when her daughters were diagnosed, from communication to hearing devices to the type of education she wanted for Meghan and Katie. For many parents, the choices can be overwhelming.
"Parents should ask for help if they need it," says Karen Aguilar, a coordinator with CHOICES for Parents, a statewide coalition of parents and professionals that provides support and information to families of children with newly identified hearing loss. "I always tell parents to just call, and if we can't answer their question we can find someone who can. They shouldn't just sit and wonder what to do."
With all the different decisions parents need to make after discovering their child has a hearing loss, Aguilar advises focusing on the most obvious and most important decision first.
"We push communication first-how do you want to communicate with your child?" she says. "We explain the different options so that they understand them and understand that they can change their minds. It's important to make a decision that's good for your child and your family."
For two families with deaf children in the Chicago area, the Strecks and the Bussas of Villa Park, the question had two different answers. The Streck family opted to go with Total Communication, which includes sign language, for their daughters while the Bussas went with oral communication. Both options have their drawbacks and advantages and both have had a dramatic impact on the lives of these families.
Deciding to sign
Total Communication uses all methods of communication, including spoken language, finger spelling (spelling out words with individual letter signs), gestures, spoken language, facial expressions and sign language and is used in most public schools in the Chicago area with deaf programs.
"I am a believer in Total Communication," Streck says. "Any way you can get that information to your kids you should use. They don't need to struggle unnecessarily."
With the sign language aspect of Total Communication, parents have the option of using American Sign Language or Signed Exact English. Those who use SEE sign words in the same order as spoken and written English. ASL, on the other hand, is a language on its own that uses hand signs, facial expressions, body posture and finger spelling. It has its own rules, separate from English, for grammar, punctuation and sentence order. Most deaf adults use ASL for nonverbal communication. While the Streck family uses SEE at home, the girls do know ASL and their parents can use both types of sign language together.
As is the case with many children who use Total Communication, both Meghan and Katie use hearing devices. Meghan, whose hearing loss is not as great as her sister's, uses hearing aids while Katie, now in seventh grade, went through cochlear implant surgery when she was 9 (for more on cochlear implants, see page 50).
"Her hearing loss was getting to the point where hearing aids were not accommodating her and she was getting frustrated," Streck says. "I asked her and told her it's OK with us if you just want to go with hearing aids, if you want to be in the deaf world. But you've also been in the hearing world, so if you want to be in the hearing world we can go with the implant. It was a big decision, but we decided to go with the implant."
Since Meghan, now a college freshman, is able to benefit from hearing aids, she is not a candidate for a cochlear implant.
The type of communication a family chooses also influences the choices they make for education later in their child's life. Experts agree that early education is critical with any communication choice and with hearing testing now mandatory for all babies born in Illinois, hearing loss can be identified earlier than ever before.
Katie's education began at age 3, when she attended self-contained (not mainstreamed with hearing children) classes through the Low Incidence Cooperative Agreement (LICA), an agency of 43 school districts in the north and northwest suburbs that provides services for deaf and hard of hearing students. She went to the elementary school in her district for first grade, then moved to Elizabeth Blackwell Elementary in Schaumburg for the rest of elementary school. "District 54 just offered everything. All her needs are met, the environment is friendly, she felt like she belonged," Streck says. "It really has made a world of difference."
Every student at Blackwell takes sign language and all teachers are required to know how to sign, a step most schools don't take.
"Katie was in a world where everyone understood-they knew what they needed to do to accommodate her," says Streck. "All the kids signed, so when she got her implant and couldn't hear for a month, they all signed to her."
The extra effort Blackwell makes, from bringing in deaf adults to work with the kids to offering sign language classes at night for parents, means that students like Katie have an even greater opportunity to excel.
Now in junior high, Streck says Katie continues to hang around the friends she made at Blackwell, both hearing and deaf.
Meghan, on the other hand, had a different experience. The current program at Blackwell wasn't available when Meghan was in elementary school, so she was mainstreamed at Nathan Hale Elementary in Schaumburg.
"She wasn't given the option for self containment because her hearing loss was not significant enough," Streck explains. "She had no interpreter, just an auditory trainer" [a device that focuses sound where a teacher speaks into a microphone and the sound goes directly to the student or students wearing the trainer].
Meghan started her education at a disadvantage when compared to her sister because other health problems prevented her hearing loss from being discovered until she was 4. Any opportunity for early intervention services had been missed and Meghan didn't start school until age 6.
As Meghan went through elementary school and junior high, the fact that she had some hearing meant that some teachers didn't realize the full extent of her disability.
"They'd forget that she was hearing impaired," says Streck. "We always had struggles that we had to overcome with people understanding what she needed. When Meghan went to school, they knew nothing about hearing aids or auditory trainers. The teachers had problems putting the trainer on, and then when they did they didn't turn it on. We struggled with teachers not cooperating."
In junior high, Meghan dealt with depression as she struggled to fit in with her peers. The hearing she had left meant she didn't feel like she fit in with the other deaf students but her hearing loss was still significant enough to make communication difficult with hearing students. Although her depression is now under control and she's attending Harper College, Streck wishes the resources available now for Katie had been there for Meghan.
"Meghan was in limbo. If I knew what I know today, I would have had an interpreter. She looks back and says 'I wish I would have had that' [what Katie had at Blackwell]. I always tell her that we did the best that we could with what we knew."
Another family, another choice
The Bussa family has had struggles of their own getting services for their daughter, Amy. Even after failing newborn hearing screening three times, the Bussas had a hard time getting an accurate diagnosis for Amy.
"Our pediatrician at the time, even at 14 months old, told me not to worry. At 16 months old we saw a different partner in the same practice and he said we needed to get her in to a specialist as soon as we could," says Corinne Bussa, Amy's mother.
Amy was finally diagnosed with a profound hearing loss and soon after the family looked into the possibility of cochlear implant surgery.
"We went into Dr. Young [the medical director of the cochlear implant program at Children's Memorial Hospital] and Amy was fitted with hearing aids. She only had them a short time, though, because she didn't get good results with those," says Bussa. "We got on the list [for a cochlear implant] as soon as we could."
Amy, now 5, got an implant when she was 2 and started the early intervention program at Child's Voice, an oral school for the deaf in Wood Dale, that same year.
Oral communication and education focuses on teaching the child to use whatever hearing they have left with amplification (hearing aids and/or cochlear implants). Spoken language is emphasized through speech therapy and sign language is usually not used. The goal of oral methods of communication is to have the child mainstreamed into a regular classroom and, ultimately, into the hearing world.
For Bussa, the choice to go with oral communication came down to their hopes for their daughter.
"Our parents are elderly, so they couldn't learn sign language and there would be no way to communicate with them," she explains. "My main reason was communication. It's a hearing world, a speaking world, so we would so severely limit her opportunities if she couldn't hear."
Child's Voice, founded in 1996 by six parents looking for an oral program for their deaf children, currently has 65 students enrolled between the school program (ages 3 to 7) and birth to 3 program, with about 65 to 70 percent of the students using cochlear implants. Instruction focuses on using residual hearing and hearing devices to recognize sound and develop spoken language. Every teacher is trained as an oral deaf educator with four to five students per teacher for the first part of the day and only two or three students for the remainder of the day.
Amy started in the early intervention program, attending three days a week for three and a half hours. Once she turned 3, she went to Child's Voice every day from 8:30 a.m. to 2:40 p.m. While she does have homework now as a kindergartener, take-home work was kept to a minimum when Amy first started at the school.
"They would give me tips on tongue and mouth exercises, muscle involvement, what you have to be able to do with your mouth to speak," says Bussa. "After a day of school these kids are tired, though. A lot of the teachers would say, 'It's a long day, please don't go home and barrage them with more work.' "
Typically students graduate from Child's Voice and are mainstreamed into their regular public school by first or second grade.
"Amy will go to first grade at her regular school in Villa Park. I'm nervous but very happy," says Bussa. "I think she'll do well there. She's gotten such a good base from Child's Voice and such an array of experiences because the school's so small."
Although Michele Wilkins, the executive director at Child's Voice, estimates that about 85 percent of students at the school go on to be mainstreamed in their regular public school with or without additional services, this isn't feasible for some children.
"Some students leave us and go into a supported program-they need more assistance, a slower-paced class," says Wilkins. "They may need sign language as a visual support to understand concept development."
Child's Voice has a detailed screening process for admission as well, making sure that students who attend the school are best suited to oral communication. It is not the appropriate program for students with multiple needs.
"Then if you're looking at a parent perspective, some want their child to be part of the deaf culture, so that's not a match. Parents need to be supportive of the philosophy from the start," she says.
While the decision to go with oral communication is a difficult one and parents face a lot of hard work, especially in the early years, Bussa has never second-guessed her decision for Amy.
"For us there was no other choice than the implant. I have such a personal thing about the cochlear implant being a miracle and being available and I cannot imagine going the other way," she says. "I look at her out in the yard with her friends and think, 'Where would she be if they couldn't sign?' "
An emotional debate
The debate between oral communication and sign language is highly controversial with those on either side believing their method is best.
The National Association for the Deaf says on its Web site, "Deaf and hard of hearing children need to acquire American Sign Language early and with full fluency in order to develop their fullest potential as educated and independent citizens."
In defending oral communication and education, Wilkins says, "What we're finding is that a child that can communicate orally has opportunities presented that might not otherwise be. They are able to communicate with the community, and also develop a very strong literacy skill-written and spoken language are very close, so they're stronger readers, which is very important academically."
However, many in the deaf community argue that deaf adults who sign are just as successful as those who were taught oral communication.
According to the National Association for the Deaf, "Despite the pathological view of deafness held by many within the medical profession, parents would benefit by seeking out opportunities to meet and get to know successful deaf and hard of hearing children and adults who are fluent in sign language and English, both with and without implants."
Experts and parents alike agree, though, that it is a personal decision that should be made with the child's and family's best interests at heart.
"You have to decide what's best for your family and what's best for the future. For me there's no contest, implantation the earlier, the faster, the better. But whatever choice you make, just really stick with it," Bussa advises.
Wilkins agrees that there is no one method of that works best for all deaf children.
"I think you need to begin with what is best for the child, so an oral education might not be, or a total communication education might not be the best choice. And then it's also the parents and the parents' wishes."
No matter what choices parents ultimately make for their child, Aguilar of CHOICES advises parents to remember what's really important.
"They try to make everything therapeutic and educational and forget to just play and have fun sometimes," she says. "Parents need take a step back sometimes and remember that they still have a child."
Degrees of hearing loss Hearing loss is categorized according to the decible level a sound must be in order for the person to hear it. The categories listed are from the CHOICES for Parents Web site. Hearing loss Minimal-16-25 dB Mild-26-40 dB Moderate-41-55 dB Moderate to severe-56-70 dB Severe-71-90 dB Profound-91+ dB
Examples of sound 120 dB-jet plane taking off 100 dB-snowmobile, chain saw 90 dB-truck traffic, lawnmower 80 dB-busy street 70 dB-vacuum cleaner 60 dB-conversation 40 dB-quiet room 30 dB-whisper
SCHOOL PROFILE Child's Voice Location: Wood Dale Deaf classes: Early intervention-parent-infant program (0-18 months) and toddler program (ages 2-3); preschool and early elementary (typically up to second grade)
A private school for the deaf, Child's Voice uses oral communication and education exclusively. For all students, the focus is on using any residual hearing with amplification and developing speech.
In the parent-infant program, children come to Child's Voice with their parent or parents once a week, with the focus largely on parent education. By age 2, they attend two to five days a week, depending on their abililities. Although the program is intense, it is geared with the child's age in mind.
"It's very toddler-based, with circle time, kitchen play, manipulating toys," says Michele Wilkins, the executive director at Child's Voice. "In the course of that, everything is language-based, using their listening and communicating verbally."
Although children can attend Child's Voice up to 7 or 8 years old, the school is not a self-contained school for the deaf. It is a program to prepare students to be mainstreamed into a regular hearing classroom and the average graduating age continues to go down.
"When I first came into the school eight years ago, I had kids at age 9, where now I'm seeing such a trend of younger and younger children graduating. I have 5-year-olds that leave the program," Wilkins says.
The individualized attention offered at Child's Voice does come at a cost, though. Although many school districts pay a daily fee (currently $199.58) for students from their districts that attend Child's Voice, this only covers 70 percent of the school's total costs. Early intervention costs are reimbursed through the Department of Human Services, but again, what the school receives does not cover all costs. Parents are not charged tuition but instead are asked to give a charitable donation to the school, with other funding provided through donations from various foundations, civic groups, corporations, individuals and other community organizations. Despite the funding challenges, Child's Voice hopes to expand.
"We're looking at expanding our early intervention program with more home services," says Wilkins. "Right now it's very heavily center-based, which isn't a bad thing, but sometimes with little babies it's hard to travel."
SCHOOL PROFILE Elizabeth Blackwell Elementary Location: SchaumburgDeaf classes Early intervention: (ages 0-3), primary (grades 1-3) and intermediate (grades 4-6)
Blackwell is a public elementary school that contains the deaf program for District 54 in Schaumburg and some students from Palatine District 15. Blackwell is like many other public school deaf programs in some ways, with three separate deaf classes with a teacher and aide in all classrooms. Students are mainstreamed with their hearing peers with an interpreter for certain subjects during the day while other subjects are covered in the combined deaf class. In other ways, though, the school is exceptional.
Blackwell recently created a program of its own for deaf services.
"Before the deaf kids came, we spent an entire year teaching the building (staff and students) sign language so that in class they had children they could communicate with, and the kids were receptive to that," says Joann Korte, special services coordinator for District 54.
Blackwell also allows hearing siblings of deaf students to attend the same school, even if Blackwell isn't in their regular school district. In the elementary classrooms, the students go on community field trips twice a month, from restaurants to shopping malls to hospitals, to practice communicating with those who may not know sign language and to learn how to become independent adults.
"We've been very lucky. The administration is very supportive-you bring an idea and they say go for it," says Linda Clark, the primary teacher at Blackwell who herself has a hearing loss. "It's a small school, there are 300 kids here, and the advantage is that I'm not just the special education teacher that no one knows. These kids in my classroom are every teacher's kids."
Jennifer Gilbert is the associate editor at Chicago Parent. Her two younger brothers, now 16 and 22, were both born profoundly deaf.