Valerie James Abbott, at right, and her daughter Bridget (Photo by Jay Paul)
Valerie James Abbott remembers clearly the moment the ear, nose and throat specialist confirmed her toddler daughter’s diagnosis of hearing loss.
“The ENT said, ‘There’s good news and bad news. The good news is the test we did is a perfect replica of what [your daughter indicated] in the [hearing] booth. The bad news is it’s correct,” Abbott recalls. Then, she says, the doctor turned and walked away, leaving Abbott and her husband, Chris, with many questions and few answers.
At the time of her diagnosis of moderate to severe hearing loss in both ears, Abbott’s daughter Bridget was 2 1/2. Now she is a sophomore at Douglas S. Freeman High School in Henrico, an accomplished violinist and the proud wearer of pink hearing aids. And Abbott is the author of a book, “Padapillo,” written with the intent of helping families just like hers.
Image courtesy Valerie James Abbott
“When a child gets a diagnosis of hearing loss, right now the family [receives], maybe, a sheet showing hearing test results,” Abbott says. “My hope for this book is for it to be a tool for hearing health professionals and early interventionists to hold space for families, to start the uncomfortable emotional conversation. I would love for the family to be able to acknowledge this is going to be a journey, and everything they’re feeling is going to be validated.”
Abbott credits experienced teachers at the Weinstein JCC Preschool for noticing delays in Bridget’s speech and recommending a hearing evaluation. That screening involved ringing a bell behind Bridget’s back as she was intently occupied with a stack of blocks. When Bridget continued with her play, Abbott realized her daughter didn’t hear the bell — or much of anything else.
“We didn’t notice the signs,” Abbott says. “She spoke in a funny language that was all her own, and we attributed it to her being a toddler. We accidentally as a family invented sign language. We didn’t recognize some things because they became normal to us.”
It’s easy to overlook a child’s hearing loss that occurs after birth, as Bridget’s did, says Jennifer White, audiology manager at Children’s Hospital of Richmond at VCU. “If your child has a profound or severe hearing loss, you’re not going to miss it,” she says. “But if the child has a hearing loss in the mild or moderate range, where they’re still hearing sounds, just not clearly enough to develop speech, that looks different.”
Bridget’s loss was caused by a genetic mutation of GJB2/Connexin 26; the anomaly allows levels of potassium in the ear to become too high, which then damages hearing. Though Connexin 26 is the most common cause of nonsyndromic (not attached to a specific syndrome) hearing loss in children, when the loss comes after a child has passed a newborn screening — a “late-onset” loss — it’s often revealed through speech delays or mispronunciations, inattentiveness to others, behavioral issues, or even symptoms of ADD or ADHD, White says.
“People need to make sure [a child’s] hearing is tested to rule out hearing loss, which can mask itself, particularly in behavior,” she says. “Mild to moderate hearing loss is going to have an effect on speech and learning in school, but when they’re 3, they still act like they hear sound. And when a [young child] says words incorrectly, it’s funny.”
One of Bridget’s funny words for “caterpillar” became the name for Abbott’s fictionalized account of her family’s experience. “Padapillo” was just published May 1 — at the beginning of Better Speech and Hearing Month — by Richmond-based KWE Publishing, with illustrations by Richmond artist Gina Wojtysiak.
“I started writing about a year after the diagnosis,” Abbott says. “I felt a need to document what had happened.”
With the help of a continuing education class at the University of Richmond, Abbott realized that any book she wrote didn’t have to present every detail, noting in particular that the older sister in the book is very unlike her older daughter. “Many of my personal experiences and emotions are told through the lens of the older sibling,” she says. “While every aspect of the book is true, how we are each portrayed and what we all did and said is very, very different.”
Abbott’s goal for “Padapillo” is that it will provide information, comfort and support to families receiving a diagnosis of a child’s hearing loss and that those families can then use the book to educate caregivers, teachers, family members and friends.
“My hope is the audiologist, at the time of diagnosis, will hand “Padapillo” to the family and say ‘There’s a lot I’ve just shared with you; you have decisions to make. Let’s read this and talk,’ ” Abbott says. “I think it’s going to take more than a book to change the cultural associations of people with disabilities, [but] if this book helps to cultivate better relationships between professionals and families, and helps families navigate the emotional part of the journey, then … wow.”
Never miss a Sunday Story: Sign up for the newsletter, and we’ll drop a fresh read into your inbox at the start of each week. To keep up with the latest posts, search for the hashtag #SundayStory on Twitter and Facebook.
