Perspective

Recently I have been spending some of my days leafing through items from my life. My sixth-grade report card. Books I loved 20 years ago. Family photos. And to be honest, I have been throwing lots of stuff out. It’s a symbolic reminder that some phases of my life are just plain over. It’s also an opportunity for me to examine with the benefit of time all kinds of choices and experiences. 

I found an article I wrote for a medical journal when my children were young, detailing what it was like to raise deaf children. At the time there was barely an internet, newborn hearing screening was just beginning, and it was rare to see a deaf person portrayed in a positive way in media. Early intervention programs, which are supposed to support families with infants and toddlers, were mostly useless when it came to folks with deaf children. Looking back, I hardly know how we managed. 

But it all worked out, and our kids turned out just the way we wanted them to: smart, successful, extremely good looking, highly amusing, and, added bonus – killer rock climbers. 

Perspective

Published in Infants & Young Children, Vol. 12, No. 4, April 2000.

I was fast asleep early one recent Saturday morning when my 5 year old son, Asher, came bounding into my room. He excitedly tapped me on the shoulder several times to wake me up. As I rolled over into consciousness, barely opening my eyes, he proudly announced he could count to 100. He immediately launched into a demonstration of this new skill, racing through one set of tens to the next, stopping and slapping his head from time to time with a grimace when he skipped a number and had to go back, pausing after each nine. When he was close to the end he slowed down, reciting the numbers with more flourish and drama: “ninety-EIGHT … NINETY-NINE …  ONE HUNDRED!” He stopped and stepped back in a glow, leaving me to appropriately ponder this impressive demonstration.

Through a sleepy haze, I smiled with the kind of satisfaction I have experienced countless times over the years. It was not just that he could count to 100 – that was nice, but expected. I was more gratified by knowing that Asher, who is profoundly deaf, would not have reached this level of language, cognition, self-assuredness, and, well, counting, if he had not been immersed in American Sign Language (ASL) since the day he was born.

Asher has a sister, Meira, who is 5 years older than he. Like most hearing parents, when my husband, Dennis, and I found out she was deaf just before she was a year old, we were devastated. We thought her deafness would relegate her to a dark, lonely future with limited learning ability and career opportunities. We questioned whether she should be able to become self­-supporting, fulfilled, or even happy. Fortunately, our pediatrician was perceptive enough to know that we would benefit from talking to other parents of deaf children. She referred us to two families she knew. When I talked to and visited those families, I saw that the expectations for their deaf children were very much like the expectations I had for my daughter but feared I had to give up. The children attended schools designed for deaf children, and the families used sign language. The parents could read their children stories, help them with their homework, and discipline them when necessary. Their lives were normal. They had warm, loving relationships. They attributed much of this to their ability to communicate clearly with their children through sign language.

The signing families we met influenced us quite a bit. We began to see sign language as a natural way for deaf people to communicate. Meeting additional families of deaf children, some who signed and some who did not, confirmed this. At the same time, we did want Meira to be able to speak so that she could communicate with hearing people who didn’t know sign language. But we knew that this might take years, if it happened at all. So we choose to use ASL signs in English word order and speech with her at the same time, using “simultaneous communication” or “sim-com.” It was a somewhat awkward process at first. We literally had to check the sign language dictionary every time we wanted to tell her something. However, it was surprisingly effective. Within weeks Meira was understanding our signs, and shortly after that she began signing back, first in the nondistinct motions of sign babbling and baby sign, then in real signs. Although in some ways it was strange to us that these were our child’s first words-we had been expecting something quite different, to say the least – it was every bit as exciting as if they had been spoken. We were communicating at last.

We also had the opportunity to meet deaf adults. While scary at first, this was enlightening. They were very patient with our beginner signs and our constant requests for them to repeat what they said. Their interest in our daughter­ or perhaps it was the bond they felt with her­ was apparent. Over and over they told us what a wonderful thing we were doing for our daughter by learning to sign and how they wished their parents signed. Learning about their experiences was important to us. It helped inform our decisions in a way that our own experiences as hearing people could not.

Contrary to our fear that deaf people spent their lives feeling as though they had a loss and wishing they could hear, the deaf adults we met were satisfied, well-educated individuals with professional-level jobs, interesting hobbies, and much to our relief, even a good sense of humor. They fit very much the ideal we had for Meira before we found out she was deaf. The main difference was that their primary language was ASL.

We used sim-com with Meira for the next 2 years. When she was around 3 years old, we moved to a bilingual-bicultural philosophy using ASL and English as separate languages. Adopting this view was nor something that happened overnight. Like any parents of deaf children, we wanted to be sure that Meira acquired fluency in English. In the beginning, we felt that speaking while signing would be the best way to accomplish it. The more exposure to English, the better, right? But as the concepts we were trying to convey became more complex, using both languages at the same time caused each language to lose its integrity. The spoken English would be somewhat understandable (to a hearing person already fluent in English), but the signing looked simply confusing. It is difficult to try to use two languages at once. It was not fair to make Meira guess what we were trying to convey. We found that turning our voices off while signing improved clarity, so that is what we did. We began explaining to her (in ASL) the differences between English and ASL. We encouraged her “reading” and attempts at writing and sent her to both private and in-school speech training.

Today, we sign in ASL when we are gathered around the dinner table catching up on our day. We sign in English when we are reading Language Arts homework. We sim-com when Meira has a hearing friend over. We have short conversations that rely mainly on speechreading for practice. And when I am trying to open the door while carrying four bags of groceries, Meira doesn’t have any doubt that I am saying, “Open the door! Please!'”

It was into this environment that Asher was born. He signed his first word, “Daddy,” when he was 9 months old. He is beginning to read and write, and he tells us richly detailed stories about the events in his life, whether they happened last year when he was 4 (“a long, long, long time ago!”), last week (“Hmm, it was either Tuesday or Wednesday … “), or in the future (“I will love you forever and ever.”).

My husband and I are often asked why our children don’t have cochlear implants. The simple answer is that we don’t see any voids in their lives that a cochlear implant would fill. They have full language access at home- even our extended family signs. They have full language access at school – they attend a school for deaf children. Meira is an excellent writer, producing mystery stories and poetry. Asher writes thank-you notes to family members who bring him his favorite toy – trains. They have deaf friends, and they have hearing friends. They have hearing aids and receive speech training. They play sports and go to religious school. They have full, rich lives.

It is well known that the most successful users of cochlear implants are late-deafened adults and the least successful users are prelingually deaf children. This fact should come as no surprise. A late-deafened individual has a lifetime of hearing memories on which to draw while attempting to decode the imperfect signals of a cochlear implant. A prelingually deaf child is relying on this imperfect signal to learn language. Because cognition, social development, and knowledge about the world-and everything else that follows – are so important and depend on appropriate language acquisition, it seems rather risky to depend on this device, particularly when a deaf child’s visual system is fully functional.

Families whose child receives a cochlear implant go through intensive pre- and postoperative procedures. Before the child is considered a candidate, children and families undergo a variety of physical, audiologic, and psychological tests. Parents must demonstrate commitment to developing their child’s speech skills. If the implant team is not satisfied the family will follow through to the extent desired, the child is denied an implant.

After implantation, families must enroll their children in an educational or speech program that supports the implant. Families bring their children to an audiologic clinic a number of times for mapping and to a speech therapist for many hours of intensive speech therapy. Implant teams work closely with families, audiologists, speech therapists, and educators to support the implant. If an implant team does not view a particular educational program as adequate to support the implant, the team will help the family advocate for change in the program. Families invest large sums of time, money, and emotion in support of the implant.

There are studies whose authors report that children with cochlear implants are more successful than children without implants on a variety of discrete measures, such as phonologic awareness or identification of words in an open set. However, no study has attempted to separate out how much of the child’s success on these measures is a result of implant and how much is a result of the selective nature of the cochlear implant process, the support of the cochlear implant team, the number of hours spent in speech therapy and auditory training, and the time and emotional commitment of the family. There is no evidence to show that such narrow skills, which are not even universally learned by children with cochlear implants, translate into higher language, cognition, or quality of life for the child.

Furthermore, because cochlear implants in young children are relatively new, there are no long-term studies of possible detrimental effects. As such, implants are still in an experimental stage. Finally, if deafness was so terrible that it required surgical intervention, wouldn’t deaf adults be standing in line to obtain cochlear implants for themselves and especially for their children’ Yet adults who are deaf from birth almost never seek out a cochlear implant either for themselves or their children.

“But don’t you want to give them every option?'” you ask. That is what we are doing. First and foremost, we are giving them the option to lead normal lives, free of unnecessary surgery. Free to express their thoughts, dreams, and emotions in the ways they can do best. Free to engage in any playground activities they like without fear of damaging their (very expensive) medical device. Free to determine, as adults, what type of amplification device(s) they would like to use, whether that is a cochlear implant or something else.

In closing, here are some things you can do to support deaf and hard of hearing children and their families as you set up newborn hearing screening programs in your hospitals.

• Include deaf and hard of hearing persons and families of deaf and hard of hearing children in an advisory capacity. They know better than anyone the effect of hearing loss on everyday life and contribute important, unique perspectives.

• Provide structured opportunities for parents of deaf and hard of hearing children to meet other parents of children with hearing loss and deaf and hard of hearing adults. Parents of newly identified children who meet successful parents develop confidence that they, too, can successfully parent their child. Parents who meet successful deaf and hard of hearing adults can envision a bright future for their child.

• Learn about the deaf community and deaf culture. Many children identified with hearing loss will be a part of this community sooner or later. Medical personnel and other service providers can develop a more positive view about the potential achievements, contributions, and quality of life of children with hearing loss if they become familiar with the adult members of this community.

• Ensure that parents of children identified with hearing loss receive information from a variety of sources, not just medical and audiologic ones. Healthy child development depends on many factors in a child’s life, including full access to communication, acceptance of the child within the home and community, and appropriate environ­ mental stimulation. Other groups and agencies, such as parent organizations and schools for the deaf, can provide important information that can help parents enhance the development of their child as a whole person and often provide a perspective that differs from the medical perspective. Better informed parents will make better informed decisions.

• Ensure that early intervention programs and services are available to meet the needs of children with hearing loss and their families. Early identification is only efficacious if the child and family receive immediate, appropriate intervention. Programs and services should ensure that these children develop language – whether spoken or signed – at a rate on par with that of their hearing peers. Parent counseling and training should be offered, including training in child development, sign language, and activities that promote children’s speech and audition. Counseling and training should be available in the parents’ native language. Children who have multiple disabilities should receive services designed to address their developmental needs.

I am grateful – and Meira and Asher are, too! – that my husband and I began signing with them as early as possible. My fervent hope is that other families of deaf and hard of hearing children have the same opportunity. Universal newborn hearing screening and intervention programs are spreading far and wide. These programs must be set up in ways that will support successful outcomes for all deaf and hard of hearing children. Support for sign language and the deaf community is a critical component of any universal hearing screening and intervention program.