D/HH Plus 

Waiting for Clarity

By Stephanie Daniel, Connecticut H&V

As first-time parents, we were thrilled and excited to welcome our first child, a son, into our family in 2018. With an uneventful pregnancy and delivery, my husband and I were surprised to learn that our precious bundle of joy had failed the newborn hearing screen in the hospital. Our son then failed the test two more times in the hospital, and we were referred to pediatric audiology for an ABR (Auditory Brainstem Response) test. Without a family history of deafness in our family, and an uncomplicated delivery, we were assured it was likely just fluid in his ears. There was a few months’ wait, which was challenging, and our son was diagnosed with permanent hearing loss at 3 months old. He received his hearing aids at the age of four months, and we began our new journey.

As our son continued to grow, thrive, and develop, we noticed many things as parents. Often, these nuances were attributed to his congenital hearing loss and the fact that he was likely developing differently as a result. As parents relentlessly committed to our son’s success, we sought additional information and answers to understand why he struggled with sleep, seemed extremely hyper and had unbridled energy, had narrow and unique interests, and experienced cataclysmic outbursts that could not be quelled, regardless of the strategy. We were informed that as he continued to age and develop, additional tests and diagnoses were likely in his future, but since he was deaf, that also could be the cause, so we just needed to wait and see.

Our son was thriving in his development, expressing interest in Thomas the Train, making friends, laughing, smiling, jumping, and running around for hours without a hint of exhaustion. We were thrilled to watch him grow and thrive; it was incredible. He loved his hearing aids and was signing as he developed his independent personality, preferences, and behaviors.

When the pandemic occurred, life changed, and many of his services were reduced. This was a challenging time for our family. As we navigated changes in his services and appointments, concerns about his development persisted, and in our opinion, could no longer be attributed to his congenital deafness.

Once our amazing son was five, it finally became evident to his providers that there was more going on with our incredible kid. We then began the lengthy process of advocating for evaluations and sought support from his doctors and new specialists. At age 6, our son was diagnosed with ADHD/Anxiety, and at 7, he was diagnosed with Level 1 Autism.

This was an incredibly long journey, and advocating for our son played a significant role in getting the evaluations to explore what else may be occurring. He is remarkable, brilliant, funny, silly, and sweet. Sometimes, the world can be challenging for him, whether through communication, socioemotional understanding, or connecting with those around him.

We love watching him grow, thrive, and succeed in all his pursuits. It just takes more support, patience, and navigating conversations and situations to make sure he is supported, valued, and respected. Ensuring access for our son is essential, and the inclusion, respect, and celebration of all abilities on a national level is our biggest concern.

Our son is a fantastic kid, such a joy to be around, so interesting, and able to name all American presidents or tell you more soccer facts than you ever thought possible. He is simply incredible, and we feel so lucky that he is part of our family. Navigating his early years was, and still is, unpredictable; however, we now know how to support him more effectively. Every day, our son continues to show us—and the world—just how wonderful neurodiversity is and how amazing deaf children are!   ~

H&V Communicator – Winter 2026