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.
Those in the Community and the Deaf Comminity don’t seem to get the fact that there is no waiting to get the Cochlear Implants for the child and the loss of valuable time involved. Check out the Johns Hopkins study done on the comparisons of job earnings etc for the Deaf using ASL versus the Cochlear Implant deaf folks, it is staggering. With more and more parents choosing to have their deaf children join the hearing world, the Deaf Community will be losing Federal money as their numbers decrease. Seems like it always comes down to money!
Thank you for your wonderful article about two wonderful and courageous children and their families!!!
Lauren,
First, I’m very glad that you have chosen to write an article on Deaf/Hard of Hearing children. As a Teacher of the D/HH, it’s always exciting and, at times, nerve wracking when I see an article written on my chosen field of work. So it was with baited breathe that I read yoru article.
Unfortunatley, I was disapointed to several errors and misrespresentations in your article. As a professional journalist you should have investigated further before printing several of the statements in your article. I too, like Ms.Leen, am a certified Teacher of the Deaf and Hard of Hearing with a Masters degree and a certificate in Parent-Infant Mental Health. I have been working for the past 25 years as an Early Start Teacher for D/HH ifants (birth -three) and their families. At the risk of revealing my age, I also worked for 7 years with both middle school and high school deaf children. I have worked in the mainstream, self-contained classes and at schools for the Deaf. I had no connection with the Deaf community when I entered the field as a naive graduate. My graduate program was small and had three deaf teachers enrolled. All three dropped out – all three were bright young women but the professors reused to sign and no interpreter was provided. I remember being somewhat shocked and would sit in class trying to imagine how these profoundly deaf women were expected to learn as I was. Were they super human lip readers? I can not lip read for the life of me – I’m sure I occassionally fill in words unconsciously when in a noisy environment. The technical level of the work we were required to do was above and beyond the skills of any individual. We did not receive instruction in sign language but when severla of us requested it, we were told to buy a book and had 1/2 hour session one timea week with the speech therapist. What we learned looked far different than what my three deaf classmates were using. At that time, it was professed that even profoundly deaf children could hear with hearign aids. they just needed practice and training in listening. We learned to use music and nursery rhymes. We spent hours making cards with ideas to incorporate the LING sounds (now widely used for CI children) into our classroom work with Deaf children. I was required to observe at the Rochester Schoolf for the Deaf and tutored two little elelmentary school girls who signed under the table in order not to get in trouble. They certainly did not understand me nor did I understand them. It seemed like they had this magical secret langauge that I was not privy to, and would tease, laugh and share their thought and dreams with each other – it looke so easy for them but I knew it was not easy for me. My path took many turns but I must credit much of my understanding of deaf children,language development and successful teaching strategies to my Deaf colleauges. As a professional and on a personal level I am very saddened to hear the Halberts impression of the school for the Deaf. I am shocked and agrieved to hear that anyone from our school program would have suggested that a ‘cochlear implant is circumsizing the brain.’ I am not questioning the Halberts voracity, but I do know one person does not a community or school make – so I would like to personally apologize for whoever made that comment to the Halbert family. CSD prides itself on the professionalism of its staff and provides on-going training and in-service on the best, evidence- based and research supported practices. The school serves many children with CI’s but unfortunately they are often the children for whom the device has failed and not met the promised expectations. Please note, I said the DEVICE has failed – not the child and NOT the family. We also serve infants and toddlers newly implanted in our Early Start Program – we too sing, practice listening, provide auditory training, as well as speech and encourage full-time use of amplification for those who it may benefit. Being in the field as long as I have, has allowed me to experience a variety of practices, strategies and technology that have come and gone then come back again ‘re-packaged’ as new and ‘unique’- since when has singing with childrn and parents NOT been part of a preschool program for Deaf/HH children? Signing helps children with inflection, prosity and provide repetition and ease of expressions because the words can be memorized and always stay the same. Sounds are drawn out so provide the child with more time to ‘hear’ the sounds being produced. Every Deaf adult I know or have met -and are my age (over 50) remember music and singing as part of their education. They are just sorry theydidn’t have more math and science – for we have to remember speech, auditory training and music often take the place of other subjects due to the reality of time!
One truth was very evident in your article – no matter what path a family chooses – it’s hard work. Not using ASL with your child because your family won’t learn it is not the most thought out plan. I know if my sister or brother came to me and said “I need your help in raising my child. She needs you – I need you to join me in learning this new langauge.” I’d be on board in an instant – just being a cheerleader helps and develops a beautiful relationship with a Deaf child – knowing that their family at least tried to meet them and communicate with them is a gift to not only the Deaf child but the whole family relationship and dynamic. As a mental health professional I would be remiss in not making this point – a healthy family works hard together and knows the work is hard – but the feeling you get from the working is worth more than what you have given one hundred times over.
Deaf children, like all other children have the capacity, if provided complete access, to learn more than one language and research is now showing us that chidlren who have a strong foundation in one language (ASL for example) are better able to develop a strong foundation in their second language (spoken English). And we must remember speaking does not guarantee the ability to read and write. You and I never had to ‘learn’ our language – we acquired it naturally through daily interactions with full access to the spoken word around us. Hearing aids and CI’s are only a small part of the solution. Learning ASL is hard work for parents, learning to speak/hear is hard work for D/HH children. Who has the ability and responsibility to work the hardest when a new baby is born? We all know the answer – adults have a lot more resources and coping mechanisms than a tiny new born or a two year old. 99.99% of the families I work with love their children and want the best for them. When a baby is born parents are excited and looking forward to experiences they will have with their child. When a baby is identified as being Deaf/HH, parents are often filled with fear of the unknown – will my child be able to get a job, learn to read, make friends, drive a car, get married, have children, play sports, become independent and on and on it goes. Fortunately, we know all of these things are possible with all the hard work that comes along with raising any child. We can not rely on the child’s weakest link/sense to get them through and provide a foundation for learning. Linguists all agree that in order to succeed, children need to have a language that is natural,accessible, complete and EASY to acquire. Then they will have the opportunity to learn about themselves and the world. We can not allow their cognitive and social emotional development to wait for their spoken language to catch up (if it does at all). To me it seems unwise. Just a few years ago, a teacher was cleaning out an old storage closet it was obvious the closet had not been touched for years. She came to me later that day with a poster she had found and showed it to me covering the bottom half. “It’s a Miracle – She can HEAR!” were the bold words I saw. I became confused because the picture seemed out of date. “Is that a CI advertisement?” I asked – “no” she said as she unrolled the poster. “It’s an advertisement for hearing aids from the early 1960’s” My point being, promises can be made but not always fullfilled. Many Deaf adults carry the scars from those earlier years when the promises made to their parents were not fulfilled and of being labelled ‘failures’ for not being able to learn the spoken word – or being praised for their speech skills in school but when they entered the real world – no one could understand them. They are angry at the ‘bill of goods’ their parents were sold and never saw the promises come true. Fear that new parents,children and families will experience the same frustrations they have experienced may cause them to over-react or respond negatively about CI’s or maybe they did not have ACCESS to the most up to date and accurate information about the CI. Having to learn ASL later in life does not repair the academic and languge gaps and delays many deaf have suffered.
I’m a bit wordy tonight but on another note – the Californai School for the Deaf DOES follow their students academic progress over the years and are proud to say that 90% of the students that started in the Early Childhood Edcuation Program at CSD before age 5 and cont. through High School passed the California High School Exit Exam. The California School for the Deaf also has the highest percentage of students passing the exam of all programs for the deaf and hard of hearing in California – mainstreamed and oral.
Having a Deaf/HH child is difficult when you don’t have the support and knowledge to understand the complexity of the brain, language development, the speech and hearing systems, audiology etc. etc.
having a child that is different than yourself or what you had envisioned can be a shock to new parents. And yes – the journey ahead can be tough and filled with strong emotions and struggles – but the tiny child in the parents arms is not hurting – they know nothing different than who they are. It is the parents hearts that need to heal and dreams that need to be re-designed – but that is every parents experience wether they have a deaf child or a hearing child – I am not the ballerina my mother envisioned when she was pregnant. Paretns and children need to build new dreams together. and if life was easy, we wouldn’t have much to live for- the human spirit needs challenge. Asking families who are just getting to know and fall in love with their baby to make a decision about what language to use is ludicrous. We act as if there are real ‘choices’ – there are not – LANGUAGE is the most critical piece for any child. Giving your child as much support as possible and as the adult, assuming a majority of the burden to do so is a parents job. The more we give to them, the more they will be able to give back. I am not opposed to hearing aids or CI’s and have seen the benefits of both for spoken language development bu technology is not the secret to success – as a TEACHER, as an EDUCATOR as an ADVOCATE for both the child and the family, my priority and responsibility lies in establishing a strong foundation for learning, academics, social emotional development and hopefully success in all areas of life not just the ability to speak and hear.
I wish the families in your article all the best on their individual journeys. I hope they take advantage of all the resources (including ASL) available for their children. I also hope and maybe wish I could DEMAND journalistic integrity when reporting on and sharing information that is crucial to a child’s overall development and can impact a family’s path. Get the facts straight – go to the source and be wary of reporting one or two family’s perspective only. You have power and influence – use it wisely.
Regards,
Michele Tompkins
Parent-Infant Educator Deaf/HH
ECE Teacher Specialist
For decades, I have wondered why there is such a war between the Deaf and hearing worlds. We could rise above fighting, if we simply changed the question from “What is wrong (or different) with my child?” to “What does every human child need?” Then signing to your infant makes sense. Every child needs language – full linguistic imput, so a visual language for a visual baby only makes sense. If you choose an implant, the baby will have received language and is equal to all other babies.
To put if another way, if we saw the baby first, instead of the deafness, we could see that it would be a crime not to talk to a baby for one or more years while waiting for a medical procedure. Deaf people are like any other people. They want to be treated with equal respect. Johns Hopkins has never studied the success of bilingual Deaf people who have had language from the crib like most babies get. Their success is greater than just earning power.
Denise,good devliery of information
Well written article! Interesting to see some other views on Cochlear implants.
This is a biased article. Did the writer attempt to get California School for the Deaf in Fremont’s view? I definitely don’t see it. There’s more than one side to a story, after all.
Furthermore, did they attempt to interview alumni of this school? I have friends who attended that school and they all told me all about how the school was a complete waste of their time. They all are now adults with their full-time jobs and they now prefer to use ASL.
Also, think about it. All of the time and energy spent on “listening” and “speaking” could have been used on teaching and learning. While kids are learning to speak and listen, they’re not learning academics. This only serve to delay their academic development even further. All of this could have been avoided if parents were willing to learn American Sign Language (ASL) from the beginning when they learned of their child’s deafness.
Here’s a shocking piece of information – there are plenty of ASL-using Deaf persons out there who can also speak and listen. If you were to take time to study Jim Cummins and Stephen Krashen’s work on language learning, you will come to understand that language proficiency in one language (ASL) will lend itself to a second language (English). With many individuals, ASL also have contributed to their oral development.
Oral education is about forcing deaf child to meet the parents’ needs and not the other way around. It is also about focusing on speaking and listening at the expense of academics. Only if those parents were willing to bring ASL into their lives, they will see their child growing up into a well-adjusted bilingual adult.
“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…”
The remarks by Leen, the assistant director of the Jean Weingarten Oral School for the Deaf should ring bells everywhere. She said, “…they’re just slightly delayed…” If that were true, why would only 60% of her students move onto mainstream classes? That means 40% of the students remain seriously delayed. That should be an unacceptable statistic.
Fact is…only 8% of deaf K-12 students and 15% of hard of hearing students are reading at grade level or below in the State of California. This is a result of such professionals who have ideologically promoted oral training for deaf students.
Granted, they can “talk.” But does this necessarily translate into successful academic achievements? Sadly, no.
This is a great disservice to parents who are not shown the end potential results of their momentous decision to go oral for their deaf children.
If you want to teach a deaf child to talk, that’s fine, but watch out for continued language delays.
As for everyone else, a delay in language is unacceptable. Why would we want to accept that of our deaf children?
I am doing a project at school about hearing and we are now doing a project on cochlea implants. This information has really helped me to do my priject and is a great piece of writing. Before reading this I didn’t realise how unaware I was about Cochlea implants. I didn’t know that so much was involved in the sugery. This technology is brilliant and I am sure it changes the deaf person’s life forever if it works.
Many Thanks
Abbie Smith 🙂