What is it like to be a hearing mother of Deaf children?

“Hand me your ears so they don’t get wet,” Joanna reminds her six year old daughter Amy, who lost her hearing completely shortly after birth. Amy yanks her cochlear implants off her head, hands them to her mother and slips into the pool with her friends. They splash and play, but before long Joanna notices Amy standing off by herself. Her friends are chatting, but

Amy cannot hear them and they cannot sign, leaving her unable to participate in their conversation. How does this and other similar situations affect a mother like Joanna?

Joanna (not the mother’s real name) is a mom of two Deaf children and three hearing children. Joanna still remembers the moment she found out her first daughter, Amy (not the child’s real name) was Deaf. It was January eighteenth of 2018. The audiologist walked into the examination room, looked at Joanna and said, “She’s completely Deaf. What that means is if she stood next to an airplane she could not hear it.” Joanna cried the whole way home. It took at least nine months before her “mom brain,” as she calls it, would really accept that.

But Joanna’s situation wasn’t uncommon for most parents of Deaf children. The National Institute on Deafness and Other Communication Disorders (NIDCD,) which is the federal government’s focal point for the support of biomedical research, tells us more than ninety percent of Deaf children are born to hearing parents. This means that most children who are Deaf do not have parents who share their primary language.

Joanna and her husband found out that Amy was Deaf when she was nearing two years of age. They didn’t have the resources early on to acquire an accurate diagnosis. As young parents, they didn’t know how much they needed to advocate for their child, and Amy was a smart one, making it difficult to determine whether or not she could hear. As a result, Amy was completely Deaf by the time she was diagnosed at twenty two months old. The National Association of the Deaf (NAD,) which is an organization for the promotion of the rights of the Deaf in the United States, explains the importance of early diagnoses: “Early identification of children who are born deaf or hard of hearing is critical to ensure that their families have the resources they need to help their children acquire language, spoken and/or visual, and achieve age-appropriate communicative, cognitive, academic, social, and emotional development.” If a child is not equipped with language skills at an early age, they can struggle with language delay. We see this when we compare Joanna’s first child with her second, Levi (not the child's real name.)

Levi was diagnosed with hearing loss only a few months after Amy. It is important to not only make sure children get screened for hearing loss but also that they “receive the necessary follow-up evaluations they need to confirm their hearing status” (NAD.) A child might not be born Deaf, but he or she could still lose their hearing shortly after birth. Levi was tested as a nine month old with an auditory brain response test. His diagnosis was sensorineural hearing loss. The NAD goes on to say that when the Early Hearing Detection Intervention Act was established in 2000, most Deaf children were not being diagnosed until two and a half years of age. Because Levi was diagnosed faster than Amy and given hearing devices sooner, his transition from American Sign Language (ASL) to being bilingual with ASL and English was faster and easier.

But screening was far from the hardest part. Out of nowhere, as a mom of a two year old, Joanna had two Deaf children. She and her husband started teaching them ASL to give them a language, because at the time, the state decided you had to have a nine month hearing aid trial whether it would benefit the child or not. It didn’t benefit either of Joanna’s children. The parents gave bits and pieces of ASL to Amy and Levi as language titles and labels, but the toddlers still weren’t understanding it as a language or getting any benefit with the aids. In November of 2018, Amy underwent surgery for her first cochlear implant.

The cochlear implant (CI) is a medical device that is an aid, the NIDCD explains: “A cochlear implant is very different from a hearing aid. Hearing aids amplify sounds so they may be detected by damaged ears. Cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve.” CIs do not fix hearing loss like many people believe, Joanna tells us, but like a hearing aid, it gives the nerve stimulation. The difference is that instead of magnifying the sound like an aid, the CI actually brings an electric impulse to the auditory nerve after it has been implanted and activated. Then, the brain has to learn how to turn that electric impulse into what we know as sound. Amy’s implant was activated around Christmastime with some benefit, but because the auditory nerve had been unstimulated for so long, it was going to be a long journey for Amy of learning how to use a cochlear implant, as well as of acquiring a verbal language. She would need a lot of speech, auditory, and verbal therapy.

Even if Deaf or hard of hearing children are aided, they still run the risk of being delayed in their language skills. One option for education is Deaf schools. This was what Joanna and her husband chose for their children after about a year of trying to teach Amy ASL. This involved moving an hour and a half away from their home in order to allow her children education at an immersion Individualized Education Program (IEP). Joanna tells us this kind of school allows the student to be fully immersed in the targeted language.

Later on, when Joanna’s growing family decided to move farther away, they had to make sure their new house was close enough to a good Deaf school. Deaf schools can be very beneficial for avoiding language delay. As Lydia Callis, an author at Sign Nexus, says: “...schools for the Deaf can make all the difference by offering young deaf children the support they need to develop their language and literacy skills in a specifically structured setting.” This gives Deaf children the opportunity to learn in a school that was made specifically for them, rather than trying to accommodate a language that is not their own. Lydia goes on to share a quote from Julie Rems-Smario, the president of the California Association of the Deaf: “It is not the ‘deafness’ that causes the child to be language deprived. It is the lack of full access to language acquisition, especially during the first two years.” In other words, it isn’t the fact that the child can’t hear that causes language delay, but rather that these individuals do not have the necessary means of developing a language.

While a school for the Deaf is one education option, it is not the only one. Parents may also choose mainstreaming or homeschooling, says Shelly A. Danley, an ASL professor at Corning Community College. According to the online dictionary Cambridge, mainstreaming is defined as “the act of including people who have particular difficulties or needs in the same schools or places of work as everyone else.” Some Deaf children are enrolled in schools with hearing children; this decision is up to the parents.

As if the education aspect wasn’t hard enough, parents like Joanna also must decide whether to equip their child with hearing aids, cochlear implants, or neither. While Joanna and her husband decided to get Amy and Levi surgically implanted when the hearing aids did not

work, it was not an easy decision. For instance, implants come with many risks, as the U.S. Food and Drug Administration tells us, including meningitis, perilymph fluid leak, cerebrospinal fluid leakage, injury to the facial nerve, and reparative granuloma. Parents also have to be careful to keep their children still while the wounds heal and prevent them from pulling off the bandage and allowing infection. In addition, they will have to be extra careful about what they allow their children to do. If their child were to ice skate without a helmet and take a fall, for example, it could do more damage than to someone without an implant because of the device in their head.

Hearing aids do not have the same risks cochlear implants do. Hearing Aids for You, which includes licensed Doctors of Audiology, explains that the aids could be set up incorrectly and damage ears with too high a sound. However, many will agree that this is much less of a risk to take than implants. Unfortunately, sometimes hearing aids are not enough. In addition, they are not covered by insurance like CIs are.

If the parents do make the decision to get the implants or aids for their children, either cost may be more expensive than they can afford. As BabyHearing.org, a website created by professionals at Boys Town National Research Hospital as well as parents of Deaf and hard of hearing children, tells us, cochlear implant costs can range from $30,000 to $50,000. Thankfully, Medicaid agencies in every state must cover cochlear implants if a child is under twenty one.

Hearing aids are not as expensive as cochlear implants, but as mentioned above, individuals do not get the same help from their insurance companies. Sound Relief, a practice with eight tinnitus and hearing centers, tells us that as of right now the requirements for companies to cover hearing aids is only present in five states. “They’re not considered essential medical devices. Instead, they’re deemed ‘elective’ - chosen, rather than urgently necessary.” In addition, “Hearing aids also require replacement every five years, which is an additional expense for the insurance provider.” In other words, insurance providers are less likely to help with the cost of hearing aids because they are not considered essential, as well as the fact that the person would be coming to the insurance provider every five years when the hearing aid needed replacing. “Simply put, insurance companies are less likely to make a profit on high-risk individuals like those with hearing loss” (Sound Relief). If only more people would look beyond the profit and help those who need it. At least hearing aids are considerably less than CIs, we learn from Sandra Gordon, a journalist specializing in health and medicine. “The average cost of one hearing aid is approximately $2,000, and most people need one for each ear, says Dave Fabry, Ph.D.” Unfortunately this is still a lot for some families to afford and could mean paying at least four thousand dollars every five years.

Another thing hearing mothers of Deaf children have to deal with is the misassumptions people make about their families. Joanna relays the time a relative pointed at her Deaf son, saying, “It’s not my responsibility to know him because I don’t speak his language.” People don’t like feeling different, Joanna says, and they will use any excuse to throw that back on someone else. There’s a lot of judgment to be had. Likewise, other moms don’t always understand Joanna’s Deaf children.

The most common question people who have no experience with Deaf culture will ask Joanna is: “Can they hear?” She responds with no, because they are Deaf. Rather, they have assistive devices that help them hear sounds. But they cannot understand what they hear because their primary language is ASL, not English. Joanna compares this situation to that of a Chinese girl coming to America. The girl goes to an immersion Chinese speaking school. The family takes this little girl to church on Sunday. She can hear what’s being said, but she cannot understand because she speaks Chinese, not English. Joanna explains this is the same situation her Deaf children are. They can hear some with their devices on, but

like a child from a foreign country, they cannot understand the other language yet. Some people see the cochlear implants and assume the children can speak English perfectly. But the cochlear implants are just assistive devices; if you take those off, or if a battery dies or a coil breaks, they can’t hear out of it. Joanna tells us hearing is only a small portion of language comprehension. There is a lot more to be had with the understanding of the language, especially if it isn’t one’s primary language, as in the case of Joanna’s children.

The average mom doesn’t have children with the same kind of medical, cultural, or schooling differences as Joanna. When Joanna encounters a mom with special needs children, there is an instant bond of knowing how hard it is. They share the same struggles. They know what it’s like to have to run to the audiologist and speech therapy. They know what it’s like to deal with the school system when their kids have missed too many days for appointments and they don’t know what else to do. There is a mutual respect between these mothers for having victory over their difficult circumstances.

But most parents don’t share these struggles. As a result, Joanna finds it hard to not be jealous of mothers whose lifestyles appear easier. Yet Joanna knows a lot of great moms whose hearing kids are very accepting and have fun playing with Joanna’s kids. The moms enjoy having coffee and to Joanna, it’s the best thing in the world. Living as she does though, it takes a moment for Joanna to slow down and realize where the “average mom” is at. In other cases, visiting with hearing families is more difficult. When Joanna’s family goes out, it is harder for her children to relate to adults who don’t know how to interact with them. These parents think Joanna’s children are mentally disabled, not just Deaf. Another example would be when Joanna took her kids swimming. They had to be unaided because they were in the water and the CIs couldn’t get wet. Joanna’s children can’t play with their hearing friends in this kind of situation because those friends would rather talk to their hearing friends simply because they don’t know how to communicate with each other.

Unlike what some may think, Joanna knows her Deaf children are not disabled. She knows they are no less capable than her hearing children of cognitive excellence. In addition, the depth of communication Joanna experiences with her Deaf children is just as profound as with her hearing children, even though ASL is Joanna’s second language, not her first like Amy and Levi. Joanna feels that mothers will have deep connections with their children as much as they want to have deep connections with them. While Joanna doesn’t connect more with her hearing children than her Deaf children, this is not the case for all parents. Some don’t even bother to learn sign language, and as a result they miss out on knowing their child’s experiences. There is no depth of communication. Because Joanna learned how to sign after her children were diagnosed, she knows everything her daughter is excited about at school and what her son did to his teacher and found silly that day.

Another way Joanna’s children are alike even with their language differences is that right now, Joanna’s hearing children have really copied her Deaf children. Her oldest hearing son’s first language is ASL because that is what his siblings spoke. Even though he could hear perfectly, he will literally not use his ears because that is what he has seen modeled from his older siblings and in the house. Joanna feels she will see more differences between her Deaf and hearing children as they grow older, but right now the biggest difference is simply the maintenance aspect. Joanna doesn’t have to stop and find batteries for her hearing children or make sure the coils are pointed in the right direction because they do not have or need aids.

One part of normal life for Joanna is constantly being aware of where her children are and helping them facilitate what they cannot hear. As far as day to day life goes, everything is

visual. The kids play on bikes like every other child, but Joanna is constantly trying to get her child’s attention by signing, which is difficult when they are playing and not looking at her. She cannot simply call “Be careful!” or “Too far!” because most of the time Amy and Levi are not going to hear it from the device falling off or the helmet shaking. Joanna constantly has to be stopping to get somebody’s attention. Everyday life is about figuring out one question: can they communicate? At the end of a long day, maybe Joanna’s kids are too tired to figure out what she is saying. “Normal life” for mothers of Deaf children is much slower as a result. Joanna cannot wash the dishes and have her child walk by and ask her something without stopping what she is doing, looking the other way, drying her hands, and signing back to them. Everything is a longer process, and everything is visual because any background noise makes it hard for the kids to hear. To get her Deaf children’s attention, she has to wave, stomp, or flash the lights before she can even begin talking or signing to them.

One of the hardest things for Joanna was learning a new language, as well as learning how her kids would perceive things from their cultural perspective. Not only was Joanna learning an entire new vocabulary and syntax, but a new culture, too. The whole thought process is different and she must understand that process to bridge the gap between the English and ASL world. But the culture has also been the most special thing about having two Deaf children. Her family chose to be bicultural and participate in both the Deaf and hearing community because Joanna has kids from both communities. Joanna and her husband wanted their children to have full access to both worlds. As a bilingual household, they’re constantly switching languages and combining them (much like “Spanglish.”) According to Brittanica.com, this is called codeswitching. It is the “process of shifting from one linguistic code (a language or dialect) to another, depending on the social context or conversational setting.” Some families have certain times they sign and certain times they speak, but Joanna’s family does a lot of code-switching as they are very intermixed and a lot of their friends do the same. Joanna appreciates the bicultural aspect of her family.

The other most difficult aspect of having Deaf children was learning how to deal with the new mountain given that was simply not what she expected. It is hard for her to know that life is not going to be as easy as it could have been. She will constantly have to wonder: are her kids’ “ears” charged at night? What time is speech therapy? Did they make it to the audiologist? There is a whole level of practical motherhood that might not have been there if they could hear.

For Joanna and others like her, having Deaf children has made life very different than it could have been, but it has also made it uniquely beautiful with the cultural aspects and connections with other similar moms. There is so much Joanna understands now that she never would have; so much she has had to figure out in the past six years since she had her first Deaf child. Joanna tells us it continues to be a journey of acceptance and learning how to enjoy something that wasn’t at all what was expected. As the young mother puts it:

“Is it good? Yes. Is it fun? Yes. Do we go to the playground almost every afternoon? Yes. It’s become normal life for us.”

Shelly A. Danley is a professor of American Sign Language at Corning Community College in New York.

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Hearing Aids for You

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National Institute on Deafness and Other Communication Disorders

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https://www.nidcd.nih.gov/health/cochlear-implants#:~:text=A%20cochlear%20implant%20is%2 0very,directly%20stimulate%20the%20auditory%20nerve.

SignNexus

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