For deaf kids, pandemic holds hidden consequences

Three-year-old Esther and her mother, Anne Berit Peterson, read “Ada and the Helpers” together.
Three-year-old Esther and her mother, Anne Berit Peterson, read “Ada and the Helpers” together. Esther has profound hearing loss and her father, Travis Peterson, wrote the book after she was born to bring awareness to sign language and the Deaf community. (Travis Peterson)

By Marisa Sloan
Medill Reports

Although 3-year-old Esther Peterson was born with profound hearing loss in both ears, she is well on her way to learning four languages — spoken Norwegian and English and their sign language counterparts. It’s an impressive feat for any child, but perhaps more so for Esther and her hearing family, who had no prior experience with the Deaf and Hard of Hearing community until she arrived.

“It ended up being that it was genetic, which means [my wife and I] both carried some sort of gene that caused her to have this hearing loss,” said her father, Travis Peterson. “But we don’t have any deaf people in our families on either side, and we hadn’t really been in contact with the Deaf community before this. It was completely new for both of us.”

They all started from square one. Her parents embarked on weeklong, intensive sign language courses, and a special educator visited their home in Bergen, Norway, and accompanied Esther to preschool three times each week.

“She’s the only child with hearing loss that we know of there,” Peterson said. “We’ve actually been told that she’s kind of the model of communication in her preschool class, which is pretty awesome.”

Then, just as Esther and her family felt comfortable adjusting to their new lives, the COVID-19 pandemic struck and brought with it an avalanche of isolation and old fears.

“All of a sudden, we lost complete connection with [the special educator] because she was not able to go for these visits,” Peterson said. “There were several months, or at least the whole spring semester, after the pandemic hit that we were completely disconnected with her special educator. That was a bit scary.”

The Petersons may have felt disconnected at the time, but they were by no means alone.

A 2004 paper published in Sign Language Studies suggests more than 95% of deaf children are born to hearing parents, many of whom, when holding their newborn, are meeting a deaf person for the first time. These parents can struggle to teach both themselves and their child a new language even under the best of circumstances, but the pandemic’s unique challenges — shuttered schools, social distancing and masks — have placed homes with language gaps at the epicenter of development while simultaneously stripping away any other options.

Language access must catch a window of opportunity

The window of opportunity for children to develop a first language foundation actually opens before school. The plasticity of the brain begins to gradually decrease around the age of 5, meaning that a child who has yet to acquire a language by that time may never achieve fluency in any language.

Howard Rosenblum, who is Deaf and the CEO of the National Association of the Deaf, knows this better than most.

“Too often deaf children arrive at school without having acquired language skills, and as a result fall further and further behind only to never catch up in their education,” Rosenblum said in an email. “I was fortunate to have a mother who was a teacher, and she made sure that I had age-appropriate language acquisition during the prime formative years.”

His parents also encouraged him to pursue a career in law or medicine “like the Jewish parents they are,” he said fondly. Now, Rosenblum is one of about 400 deaf lawyers in the U.S.

Unfortunately, his experience is rare.

Many deaf and hard of hearing children are raised in a strictly speaking environment, due in part to fears that learning a sign language impedes any potential ability to listen or speak. Not only is there is no evidence to support that fear, but there is also no evidence to suggest that a majority of deaf child can adequately learn a spoken language as a first language at all.

“[Parents] are often told that the best way to address their children being deaf or hard of hearing is to ‘fix’ the medical issue by providing hearing aids or by cochlear implant surgery,” Rosenblum said. “While these technological approaches may provide improved hearing, they often do not resolve the educational needs of the children.”

About 80% of deaf children in developed countries have cochlear implants, which convert sound vibrations into electronic impulses and deliver them directly to the brain, according to a paper published in Harm Reduction Journal in 2012. Although technology can certainly help children access some auditory information, researchers tend to warn against relying solely on these devices to learn a first language. Not to mention that learning to use hearing aids and cochlear implants is difficult — in a 2005 survey of over 20,000 deaf children, nearly half had stopped using their cochlear implants within five years.

Unfortunately, cochlear implant manufacturers and even medical professionals often take advantage of parents’ lack of understanding and discourage them from teaching their child how to sign in favor of utilizing a technological “cure.”

Decisions such as this one are an example of why the Deaf and Hard of Hearing community can quickly become essential to green parents.

“[These] communities are used to helping people learn how to sign,” said Donna Jo Napoli, a linguistics professor at Swarthmore College in Pennsylvania, “because so many kids are kept away from signing when they’re little and finally brought to Deaf communities when it’s clear that the child is frustrated and miserable.”

Typically, these communities also organize early intervention programs, during which deaf and hard of hearing children as young as 2 years old are brought together for play dates. When the pandemic struck, these collaborations became much more difficult, and kids were once again left with fewer outlets for when they felt frustrated and miserable.

Lifelong consequences of communication neglect

According to Napoli, a strong first language foundation is important not only for social and emotional development, but also for a range of cognitive activities including math and the organization of memory. When that foundation is disrupted, the consequences can be long-lasting and severe.

“When language deprivation occurs in hearing children, it is considered a very severe form of abuse and neglect,” Claire Ryan, a Deaf psychology doctoral student at the University of Texas at Austin, said in an email. “Deaf children should not be treated any differently. The same concern and severity should be applied when language deprivation happens to a deaf child.”

Ryan helped to conduct a 2020 study that explored adverse childhood communication experiences and their associated risks for acquiring chronic diseases and mental health disorders later in life. Even when parents actively communicate with their deaf or hard of hearing child, instances of communication neglect, commonly referred to as “dinner table syndrome,” can still arise.

“Communication neglect happens when a deaf child has language and can communicate with their caregiver in one-on-one conversations, but constantly feels left out and excluded from other conversations like family dinner table discussions or conversations during a car ride,” Ryan said. “The constant lack of self-belonging through communication neglect has an adverse impact on the deaf child’s emotional well-being.”

The study found that inadequate access to indirect family communication increases a child’s risk for developing depression and anxiety disorders by 34% and lung disease by 19% compared with those who had adequate access. For kids without access to one-on-one family conversations, the situation is dire as well — the relative risk of being diagnosed with diabetes, hypertension and heart disease all go up.

Ryan expressed particular concern over the fact that approximately 40% of the deaf individuals in the study reported experiencing communication neglect as a child. She works toward lowering this percentage by improving support services and mental health screenings for families with deaf children.

Providing access to a visual language can also help prevent the health consequences associated with adverse childhood communication experiences, Ryan said. The responsibility of including deaf and hard of hearing children in conversations, without the child having to ask to be included, falls on parents, educators and health care providers.

“The pandemic has been extremely challenging for hearing children, as evidenced by an increase in mental health issues,” Ryan said. “So imagine what that is like for deaf children, who are dealing with the stressors from the pandemic and who, on top of that, may not be in an environment where they can fully access and communicate with their family members.”

Shared reading activities as a solution

Shared reading activities, during which a parent and child read and interact with a story together, is thought to have a positive impact on early language development. According to the 1985 National Academy of Education Commission on Reading, “the single most important activity for building the knowledge required for eventual success in reading is reading aloud to children.”

Unfortunately, deaf and hard of hearing children are rarely given the opportunity to share books. Although shared reading activities look different for these kids, Napoli argues that the conclusion holds whether oral speech is involved or not.

“The strongest indicator that you’re going to be a good reader,” Napoli said, “someone who picks up a book just for the pleasure of it when you are an adult, is whether or not you enjoyed shared reading when you were a child.”

She adds that enjoyment of a book is perhaps more essential for children with hearing loss. Unlike a hearing child, who cannot decide to stop listening and continues being exposed to the book even after their attention strays, deaf and hard of hearing children aren’t receiving the book at all once their eyes wander.

With this in mind, Napoli and a colleague from Gallaudet University, Gene Mirus, developed a new type of shared reading experience in 2013: RISE e-books.

“[Mirus] was an actor in the National Theatre for the Deaf, and I write books for children, which made it just kind of the perfect alliance for doing this project,” Napoli said.

The bilingual-bimodal stories are designed to delight both deaf children and parents, regardless of signing ability, and in turn strengthen their bond with each other. When a duck flies through the air in search of a place to lay her eggs in “The Tale of Jemima Puddle-Duck,” the signer stretches out her arms and pretends to take flight. When five cats gang up on a little dog in “Rocky: The Cat Who Barks,” the signer mimics the hissing and clawing that ensues.

“There’s so much emphasis these days on the techniques of reading and the actual process, but we really just want it to be a leisure time,” Mirus said through an interpreter at this year’s American Association for the Advancement of Science annual meeting.

Now offered for free on YouTube, the e-books began as a class project for Mirus and Napoli’s college students. The languages represented back then reflected the languages used by their students, who lent their signing abilities to the camera. Over the past few years, Mirus said, the project has grown to include collaborations in 30 countries — and 30 different sign languages.

The global e-books have also taken on a new role in wake of the isolation brought about by the pandemic, a complicated situation that parents lacking strong sign language ability often struggled to explain to their deaf and hard of hearing children.

A woman signs a story in British Sign Language

A woman signs a story in British Sign Language
Catherine Drew (top) signs “Bunty and Bubbly: COVID-19” and
Georgina Drinnan (bottom) signs “Hello, My Name is Coronavirus!”
in British Sign Language. Adapted and produced by the RISE e-
books project, the stories explain COVID-19 and the importance of
handwashing to deaf children. (Marisa Sloan)

“Sometimes there might have been someone in the family who could explain what was going on, but many times there were not,” Napoli said. “And it was scary, you know? People were wearing masks, you weren’t supposed to go to school, you couldn’t play with your friends, your grandmother stopped visiting — what happened to grandma?”

A handful of new e-books, each signed and filmed in countries around the world by deaf signers, answers these questions that children may have.

“I think we’re in a crisis mode for deaf children right now,” Napoli said. “I think we’re in a crisis mode for all children, but I think that for children who have any linguistic barriers, it’s much harder right now.”

From apprehension to author

Esther Peterson received bilateral cochlear implants when she was just 9 months old. Although the technology typically has variable success, Esther is now finally able to beat her older brother at hide-and-seek — and victory is sweet.

“It’s really amazing because we were first told that it may be difficult for her to tell where sounds are coming from,” her father said. “Her brother can be hiding in a room around the corner, and she can tell where that sound is coming from enough to find it right away. It’s just phenomenal to me.”

Esther and her family will continue to learn sign language, however; not only to communicate more easily with one another, but also to communicate with the greater Deaf and Hard of Hearing community as well. In fact, her father took his immersion one step further than most: by writing a debut children’s book.

“Ada and the Helpers” is about a young fox with cochlear implants (her “helpers”) who loves to dance. On her way to a talent show, she helps three new friends see past their limitations and discover their hidden strengths.

Beyond being a heartwarming story that brings awareness to cochlear implants and the Deaf community, the book also introduces Ling Sounds — sounds such as “ahh” or “mmm” that represent speech in low, middle and high frequencies, and are used to check how well children are hearing with their cochlear implant — in the form of Ada’s new friends.

Peterson said helping children associate the Ling Sounds with characters from the book makes it easier for audiologists, special educators and parents to practice with them.

“I think families who are in the very beginning of their journey with this might feel a bit isolated,” Peterson said, adding that those feelings can easily be amplified by the pandemic. “But there’s a whole community out there willing to help and offer advice, and I think that’s key for any family who’s starting this journey together. …We’re grateful for that.”

Marisa Sloan is a health, environment and science reporter at Medill. You can follow her on Twitter at @sloan_marisa.