Super Ears – A Family’s Hearing Aid Journey
In July 2021 my 5-year-old son was fully sedated for an ABR, an Auditory Brainstem Response test. This was the second time in just four months that he had been anesthetized, having had tubes placed in the spring. My husband and I found ourselves in this unfamiliar territory after noticing a drop in our son’s hearing and responsiveness a few short months before that. Never before did he have any issues with his ears or hearing and we’d never noticed a lack of response from him in the past.
A trip to his primary care physician confirmed his first inner ear infection which was treated with the traditional round of antibiotics. The infection went away, but fluid in his ears and the decrease in hearing remained so we were referred to an ENT specialist. Several rounds of tests later we were informed that tubes would be necessary, and while this helped with the fluid build-up, the hearing tests still indicated something was off. This led us to an Audiologist referral and the sedated ABR, where I started this story. The test was completed and neither my husband nor myself were prepared for the news the Audiologist would deliver – our son had mild to moderate bilateral hearing loss and would need hearing aids. He was fitted for his first set of molds that day and within two weeks he received his first pair of hearing aids, or super ears as we now affectionately call them.
Navigating the super ear journey has been full of learning experiences for the whole family. If I had it to do over again, and for any parents just starting out on their journey, here are a few things I wish I’d known then.
Don’t worry about the why.
In our case, we didn’t know our son had hearing loss and we beat ourselves up for quite a while for not knowing. I thought back to my pregnancy and the early years, asking all the questions and wondering what we could have done differently. The ‘why’ seemed so important at first because I felt as though there had to be an explanation. But in the end, once any other medical issues or genetic concerns have been ruled out as needed, the ‘why’ really doesn’t matter.
Learn to advocate early and teach your kiddo to self-advocate when they are ready.
As I became more knowledgeable along our journey, many of my fears and hesitations fell away as I gained the confidence to speak up on my son’s behalf. I’m still learning as new situations arise and I anticipate more opportunities to expand these skills as my son begins his Kindergarten year this fall.
Learn the basics and be patient with yourself.
Take things one day at a time. From the moment of diagnosis through the first several appointments, the onslaught of emotions and information felt overwhelming. We are fortunate to have a good team who have been patient along the way as we learned terminology and basics of both hearing loss as well as how to navigate the super ears. Over time, appointments began feeling more manageable.
Understand what hearing loss means for your child.
Hearing loss isn’t the same across the board and my son’s audiologist was able to use the results of the ABR to give my husband and me an audible demonstration of what my son hears. This was particularly helpful in the beginning to understanding how my son’s world differed from my own. It has helped tremendously as I’ve become more aware of the environment, noise levels, and advocacy.
In the end, the metaphor about it being a marathon, not a race, applies. The road never stops evolving; new things can and do arise. Use this experience as an opportunity to learn and grow right along with your child and model resilience. And make sure to find or build a strong support group of people who will rally behind your family along the journey.