Finding the Other Half: Late Onset Hearing Loss
(This article was originally published in the Hands & Voices publication, The Communicator, on May 26, 2021)
My concern about children with hearing loss grew during COVID-19, but not in the way I might have predicted. I read that many audiology practices across the country had closed their doors for several weeks, and those that didn’t shut down were seeing fewer patients. I also heard about early intervention offices shifting from in home services to tele intervention -- and that not all families wanted that.
Then, last summer as the new school year approached, I heard about many preschool age children in Virginia and around the country not returning to daycare or their classrooms. They would instead be cared for at home or by neighbors or other family members. It was then that I took a few steps back. I knew that just as many children acquire hearing loss after birth as those who are born deaf and hard of hearing. I recalled that our story with childhood hearing loss really began in a full and active preschool setting. It began when someone who worked with young children noticed my daughter’s speech and language skills were not growing. She noticed subtle behaviors that we overlooked at home, and she took action by sharing her observations with us. In August 2020, I started to worry. What would happen to today’s children with late onset hearing loss? Who would notice them?
Our Bridie was born a bubbly kid, with a deep laugh and Shirley Temple curls. We didn’t notice the signs of late onset hearing loss at the time. We didn’t realize she had fallen developmentally behind. We didn’t notice that she didn’t know her colors or numbers. We didn’t notice she was lipreading. We didn’t notice many things. But, her preschool teacher did. She noticed a lot and at the parent teacher conference in February 2008 she shared her concerns about speech and developmental norms. She suggested a referral to early intervention, which then quickly led us to an audiologist who diagnosed Bridie with a moderate-sloping-to-severe bilateral sensorineural hearing loss. Because someone else noticed and took action we did, too.
As September approached I worried more and more. I wondered what would happen to the children who won’t return to daycare or preschool? What about the kindergartens that won’t offer hearing screening to new students? What about the parents who will be focused on how to keep a roof over them and food on the table and less focused on their child’s developmental milestones?
What will happen to the children with late onset hearing loss who will fall through the cracks because no one noticed or took action during COVID, or after?
In the fall of 2020, I reached out to Justin Osmond, CEO of the Olive Osmond Hearing Fund. Our family had connected with him a few years before and I shared my concerns about this specific group of at-risk children. I referred to them as ‘the other half.’ Little did I know, he shared those same worries. He had also been diagnosed with hearing loss at age 2 years old - the same age as Bridie - and he knew first hand the vital importance of identifying hearing loss early and connecting families to the supports, services, and resources they need quickly. It’s what the Olive Osmond Hearing Fund is all about.
It didn’t take long before the idea of Late Onset Hearing Loss Awareness Week was born. We decided the end of the school year was the ideal time to encourage parents and professionals to look closely at a child’s development and if any developmental or behavioral concerns are present to ask the question, “Could this be connected to hearing loss?” We knew this would dovetail nicely with the well established Better Hearing & Speech Month. And lastly, we decided to start the week of awareness on May 4 - Olive Osmond’s birthday. The woman who inspired Justin and so many others to offer hope and help to families of children who are deaf and hard of hearing.
After several months of planning, Justin and I launched Late Onset Hearing Loss Awareness Week - May 4 through 10, 2021. The campaign slogan was “Take Notice - Take Action.” We built a page on the Olive Osmond Hearing Fund Website, we published a Facebook page dedicated to the campaign, we met with Awareness Ambassadors on April 28 who agreed to help us establish a grassroots approach to spreading the word online, and each day of the campaign we highlighted quotes from parents and facts about children who are identified with hearing loss later in life.
That same week, Bridie celebrated her 16th birthday and my debut book Padapillo was published. It’s based on the true story of our family’s journey with late onset hearing loss - how we came to terms with the diagnosis and how we navigated the emotional path more than a decade earlier. As she blew out the candle on her cupcake, I felt at peace. For a moment, I was no longer worried about children like Bridie - I was hopeful. I was motivated. I was grateful. 2021 had become the year we opened our eyes and acknowledged that in order to see we must first look. In order to make a difference we need to take action, to share our concerns openly. Because every child with unidentified late onset hearing loss deserves our full attention.
