Cochlear implants help deaf toddlers hear and speak, but they come with controversy
All the evidence suggests that Averi Halbert is a typical terrible 2-year-old. She adores baby dolls, stuffed animals and things that light up. If matters were left to her, vegetables would be outlawed, as would being told no and going to bed. Right now, she’s on the verge of throwing a tantrum. Her striking hazel eyes have narrowed to an angry squint – she’s run out of grapes to eat. She pouts until her mom concedes and hands her more.
But closer scrutiny reveals another truth. As Averi scurries around the room, it becomes clear that she’s wearing some sort of thick belt under her pink t-shirt. Behind her ears are camouflaged transmitters connected to two circular microphones attached to the back of her head by magnets: The implants transmit signals to a speech processor belted around her waist. In fact, every sign that Averi is a typical toddler brings gratitude to her parents, Denise and Michael, who have struggled to achieve a sense of normalcy ever since their daughter was born profoundly deaf.
Averi’s condition was discovered at birth when she failed the newborn screening test. “They said don’t worry, it’s probably just fluid in the ears. Come back in a week, and that’s when we found out,” Denise said. “That was my D-Day when I just cried and cried and cried.”
The Halberts have no history of deafness in their family which meant they didn’t have anyone who knew how to sign. Children born to deaf parents can develop normal language through American Sign Language. Hearing parents are often placed in a tougher scenario. They could learn how to sign but it’s considerably more challenging at an older age, especially taking it beyond a basic conversational level.
Denise was adamant about cochlear implants. “We knew we wanted her to talk,” she said. “We didn’t expect the whole family to sign with her.”
She also wanted her daughter to have them implanted as soon as possible. Hearing aids did nothing for Averi – although the doctors turned them up as high as they thought comfortable, Averi still wouldn’t react to any noises – and Denise didn’t want her to fall behind because of it.
In 2000, the U.S. Food and Drug Administration lowered the age of eligibility for cochlear implants to 12 months. The FDA recently estimated that, as of April 2009, 25,500 children had received cochlear implants in the United States. Cochlear implants are now offered to children at earlier and earlier ages, in some cases as young as six months. Most children who have received implants are between the ages of 2 and 6. Candidates for cochlear implants have fewer damaged hair cells now which the implants bypass to directly stimulate the nerves and process sounds.
Although many doctors refuse to do the procedure before the patient turns 1, Averi received the implants in early March 2010, at eight months old. They were activated on St. Patrick’s Day. However, the implants were only the beginning of the solution.
“If all you did is give kids a cochlear implant, put them back in their family and say now just learn language like a normal kid, it wouldn’t work,” said Kathryn Flack Potts, a linguistics professor at Stanford University. “You have to really train kids to make sense out of this, and older people too. Even if you know what sound is like, the sound that comes through an implant is so different you have to do a lot of work to parse that. With an implant, you have a better shot of communicating with people who speak and don’t sign but you have to do a lot of work.”
Beyond the work involved, there are other reasons some members of the deaf community are skeptical of cochlear implants. For Cathy Haas, a specialist in American Sign Language and Deaf Studies at Stanford, it’s an insult that many families of the hearing impaired don’t even give the deaf community a fair chance. “The hearing people don’t know enough about the Deaf culture and our history,” Haas said.
Scarlet fever cause Haas to lose her hearing at age 2. She now considers herself an active member of the deaf community. Although she doesn’t oppose cochlear implants, she feels there is unneeded pressure on parents to get their children the implants without really consulting other options.
“[Deaf people] are being pressured into doing things they don’t want to do,” Haas said. “It’s like the hearing people pressuring the deaf saying ‘You’re stupid, you’re stupid! You need to get the cochlear implant so you can hear so you can speak.’”
Although Alex Orozco decided to get implants for his toddler, Brandon, and although he’s enthusiastic about the results, he admits the surgery portion was tough to witness. Like Averi, Brandon got his implants early – his first one at 22 months and his second at 30 months.
“The most horrible part was when he got out of surgery and went to recovery… Being such a tiny little guy, he was so swollen, eyes swelled shut, clearly screaming and in a lot of pain,” Orozco said. “My first impression when we saw him was ‘What did I do? What did I do to put him through all this?’”
However, he doesn’t regret his decision about his son’s implants. “I think it comes down to what’s best for the child,” Orozco said. “Even if they’re young at that age, we thought it was best for them. You see [Brandon] playing with the other kids, perfectly normal.”
The Halberts wanted to give Averi the best chance at succeeding with the implants they’d opted for, so they decided to enroll her the Jean Weingarten Oral School for the Deaf. The school focuses on developing normal auditory and language skills in its hearing-impaired students. The school was established back in 1967 when eight families pooled their money to rent a space in a church and hire Leahea Grammatico, a forward-thinking teacher who believed deaf children needed to learn how to listen first.
Today, the school enrolls children up to kindergarten in hopes of transitioning them to traditional mainstream schools by first grade or earlier. Its increasing popularity has resulted in a waitlist for its 56 spots. Denise expects Averi’s stellar progress will have her attending a mainstream preschool in two years.
“Being at this place is what made me stop crying, seeing the other kids could talk normal, knowing that she’d be okay,” Denise said.
Perched on a hill in the suburbs of Redwood City, Averi’s school is comprised of a small, unassuming main building and a tinier family center across the parking lot housing several classrooms. All the teachers on staff are certified teachers of the deaf and the therapists are speech and language pathologists. The principal, Pamela Hefner-Musladin is entering her twenty-fifth year in the speech pathology field. They, along with the rest of the staff, emphasize the need to teach their students, first and foremost, to listen.
Listening is the very first thing students learn at the school. First, children like Averi are taught to recognize typical environmental sounds like a telephone ringing or a cat meowing. At first, children with implants are generally only able to hear high pitch, low pitch, loud sounds and soft sounds. The neural-auditory centers in their brains need to be fine-tuned to actually understand words, so it’s crucial for them to figure out how to identify the different noises they hear. Recognition can start off as basic as a “woof woof” for dog. The important part is that the children acknowledge that they hear something. Later, when children have some language, they are taught to listen for repetition, listen again for understanding and then listen once more for good measure.
“[Initially therapy for Averi] was a lot of talking to the side of her, talking directly behind her, giving her no visual clues,” said Denise. “So that’s what we did pretty intensively for the first year and a half.” Since then, Averi’s graduated to a preschool-level class, taught by Mary Ruth Leen, an assistant director at the school who holds a master’s degree from the Central Institute for the Deaf.
“At the beginning of class, I would ask [my students] ‘How are you?’ and they would all hold up two fingers because they thought I was asking them ‘How old are you?’” Leen said. To teach them the difference, Leen uses methods that encouraged students to adopt those skills naturally rather than in a forced manner.
After snack time, she gathers Averi and her classmates in a circle and passes around a cube with faces displaying different emotions printed on each side. The trick is to pose open-ended questions. Instead of asking her students if they feel happy, Leen asks them, “How do you feel today?” An overly energetic girl starts shouting “HAPPY! HAPPY!” but one word responses don’t suffice. Leen pushes her to use full sentences – “I feel happy.”
The complete sentences help build a child’s vocabulary. At the parent meeting towards the end of class, Leen distributes handouts to Denise and other concerned parents. She reminds them not to tap their children to get their attention but instead to let them respond to their own name being called. Leen also gives the parents more tips to expand their child’s language. If a child knows what a spoon is, for example, ask for a spoon and a fork.
It takes a lot of parental commitment for the school’s program to work. One of Averi’s classmates, Brandon Orozco, commutes over 100 miles round trip from Gilroy each day. To arrive on time, his family leaves around 6:45 a.m. every morning. The Orozcos’ dedication proves that while cochlear implants may seem like the perfect, easy fix for deafness, they require much more than just the initial surgery to be truly effective.
At the school, to ensure students learn to speak as well as any hearing child, teachers divide them up by their speaking and learning levels, not by age. Leen’s class is chiefly composed of 2 and 3-year-olds who are at what she considers an intermediate level. There are two groups in her class – students like Averi who can listen and sit through an activity with very few repetitions of directions and ones who are still just learning to listen.
It’s already a challenge teaching a class of pupils well into their terrible twos. Add the fact they’re all still in the process of developing language and you’ve got a pretty taxing group to wrangle. The teaching can be frustrating – Leen has her teaching assistant shut off the lights to regain the attention of her pupils – but she remains impossibly patient and kind.
Although she has no deafness in her family, Leen has wanted to work with the hearing impaired since the sixth grade when she stayed up and caught a late night episode of the old medical drama “Marcus Welby, M.D.”
“I saw a speech pathologist working with an autistic child, working one-on-on, and I thought, there it is – that’s what I want to do,” Leen said with a laugh. “It stuck with me. I even answered those questions – they give you those career tests in high school to find out what you want to be. I would answer those questions and I knew what it would tell me.”
Leen and her colleagues have discovered several unique ways to engage their students, including using music. Every day starts off with a ritual called Morning Music. The entire school gathers in the main auditorium to sing and dance together. Some kids are shyer and hold on to their parents while others volunteer to lead the songs and dance in the front.
Today, Averi surprises everyone by going up to the front on her own. For these hearing-impaired children, music helps them grasp the rhythm of speech. In class, Leen frequently reminds her students to pay attention but when she does, she sings the word “Listen” instead of simply saying it.
“Our children are learning language typically the same way hearing children would, they’re just slightly delayed in the beginning,” said Leen. Though the school doesn’t have a method of keeping track of its students after they graduate, Leen estimates 60 to 80 percent end up moving on to mainstream classrooms.
It’s crucial for deaf children to be diagnosed as early as possible. Babies and young children absorb language – spoken or signed – easily, until their brains begin to change around age 5 or 6. After that, their language learning ability gradually tapers off through puberty.
“If a kid has never been exposed to a language by puberty, then it certainly doesn’t matter what happens after that,” Potts said, “They’re never going to be fully fluent in language because their brain is just changed and doesn’t soak it up the same way and doesn’t have the same capacity.”
Potts and her colleagues advocate for early recognition and implementation of hearing aids or implants. Over the years, their school’s demographic has shifted from kids ages 3 to 8 to to a group that now includes newborns through kindergarteners.
Outside the school the community, the Halberts have sometimes received criticism for giving Averi implants before she was old enough to decide for herself.
“A lot of people said don’t do it, you’re not giving your child a choice,” Denise said. “But I am giving her a choice. She can always take them off. The California School for the Deaf in Fremont thinks you’re cruel and unusual for circumcising your child’s brain. But I’d rather give her the choice to take them off rather than [wait until] she’s 20 and have her ask me ‘Why didn’t you even try?’”
Both Orozco and the Halberts are the kind of parents the Deaf community fears most – the ones who see deafness as a hindrance, something they need to eliminate. Denise recognizes Averi’s deafness is not something that can just go away. She sees the measures she’s taken as a way to equip her daughter for the future. “I tell people if she had the choice between being a wallflower and being a bitch, I’d tell her to be a bitch because she’s going to have to advocate for herself, right?” Denise said. “You know they say it’s the invisible handicap, but I don’t want her to be invisible. I want her to say ‘Listen, I’m deaf, you need to talk louder, you need to talk to me, I need to sit in the front, be patient with me and to not play it off, not let people think she’s not deaf. Deaf and proud.”
Such serious issues may await Averi in the future, but, for now, her greatest concern is finding more grapes to stop the rumbling in her tummy.