Take a Deep Breath

By Allison Cunningham, Au.D., Colorado H&V

If you’re like me, since COVID-19 has crept its way into our lives and everyday thoughts, I haven’t been able to relax as much. You and your family may have found your routine and orderly world suddenly chaotic and anxiety-ridden. You are suddenly having to adjust to not having immediate in-person access to services, switching to telehealth therapy visits, and in the case for school-age kids, adjust to remote learning and the added isolation of not being around their peers.

What about those families we don’t know about yet?  The babies who are born during this time may have been referred on their initial hospital screen, but suddenly are provided with no answers for weeks, if not months. Hospitals and clinics all over the nation have made the hard choice of not seeing children for follow-up newborn hearing screens and infant diagnostic hearing testing. In addition to timely evaluations, there are instances where children have delayed access to sound. Appointments of hearing aid fittings and surgeries for cochlear implants may have been delayed. Such decisions were not made lightly and were done so with the safety and health of families and medical providers in mind. These are unprecedented times.

For most professionals who work with children who are identified as having a hearing difference, we aim for the EHDI goals: to screen children by one month of age, identify hearing differences by 3 months, and begin early intervention services before 6 months of age as supported by research for best outcomes.  Children born with a hearing difference who do not meet these critical benchmarks are considered late-identified or late to follow-up. Late identification can lead to lower outcomes in language and social-emotional development, and at times create significant vocational implications. Phew. This is hard.

When public health needs trump meeting the EHDI benchmarks, this abrupt change brings the unknown and fear. Fear from parents, with the anxiety of waiting to find out if their child can hear. Fear from my colleagues and other advocates that we will suddenly find ourselves in a position of having to play catch up and support an increased number of families whose children are lost to follow-up or late to identification. Fear has a way of making us reactive and negative. We forget to breathe.

In my years of practicing as an audiologist, advocating for families, and in (finally) my more recent experience as a Court Appointed Special Advocate, I know that meeting those important 1-3-6 benchmarks allows children and their families to access resources in the form of hearing technology, early intervention and the benefit of knowing your child has a hearing difference in a way that gives them the gift of time. But to be clear, these are just tools. Are we losing sight of the foundation of child development? That critical foundation is connection.

Connection. Parents who connect through mutual eye gaze, touch, vibration, smell (the list goes on), will go a long way towards meeting a child’s most basic needs and creating trust within the baby and a place for development to flourish. These connections don’t require a particular hearing status.  Mutual gaze is the most basic building block of human communication. A family can have multiple protective factors that help them deal with stressful events, so that COVID-19 is less traumatic for babies. Protective factors are conditions or attributes in a person, a family and community that buffers trauma. Examples of protective factors include resilience, knowledge of parenting, concrete support in times of need, social connections, and social-emotional competence.

Children who meet the benchmarks of 1-3-6, who have strong connections to caregivers and are raised in an environment in which the protective factors are many, generally are well-prepared to withstand this interesting journey called life.  In fact, they’ll likely thrive. Enter stage left: Pandemic.  A #stayhome pandemic potentially causes an increased number of children who don’t meet benchmarks, but it does not mean these children are born into families without opportunities to connect or are without protective factors.

I am an audiologist. I am also hard of hearing and was late identified. I was four-years-old when I was identified. My parents not only missed those first few critical months, they also didn’t know that I blew by them blissfully unaware I was missing about half what was said to me. Fast-forward 35 years, and lots of hard work, discipline, and learning from failures and successes, and I seem to have found my calling supporting other audiologists and families who have children who are deaf and hard of hearing. I can’t honestly say my late identification didn’t have an impact. How? I am gullible.  I cannot always identify the emotions I am feeling.  I have to heavily edit any written work, as I tend to write how I hear without my hearing aids, with missing words and a signature word-order.

Looking back, I don’t think my ability to defy the low expectations of late identified children is all that mysterious or even exceptional.  I happened to be born into a family that was well-resourced and well-supported. My mother read to me every night. I played outside. A lot. I watched TV.  A lot. My father played Genesis and the Flashdance soundtrack and boogied with me in his arms. All before I was identified with my hearing difference. My foundations were strong; I was connected and bonded to my parents. My protective factors were many. When I finally had the tools and resources provided to me through hearing technology and therapies, I was ready.  My parents were ready. Today, I am one of the many examples of late-identified adults who not only surpassed the low expectations placed on us, but who are successful and thriving.

There is a part of me that suspects the reason I’ve found success in life both personally and professionally relates to being identified late. Early on, my narrative quickly solidified into a never-ending quest to do better. I challenged the professionals and teachers whose initial expectations of me were so low. I felt compelled to rise above. I unknowingly stood tall on the foundation already provided to me before I was identified.

Now, when I think about the potential for an increase for babies who may be later-identified as a result of COVID-19, I want to focus on finding them so they aren’t lost to follow-up. When I think about families whose children face a delay in access to hearing technology, I look to my colleagues, advocates and parents to not give into fear.  Rather, let’s spend the time strengthening those bonds and connections that have already started before a parent learns of their child’s hearing difference.  Let’s support a family’s innate ability to connect to their child while waiting for a cochlear implant surgery. Let’s bolster those protective factors we know provide a heck of a lot cushion for children and families that experience hardship and stress. Let’s provide hope. Let’s all take a breath.   ~

Editor’s note: The author is a frequent speaker on resilience and equity issues in healthcare, and is an audiologist with Children’s Hospital Colorado and a member of the Colorado Chapter Board of Directors.

H&V Communicator – Summer 2020