Are you Listening? Raising a Child with Hearing Loss

Being a parent to a child (or two!) with special needs isn’t something one typically considers until you BECOME one. When our twins were born healthy after surviving TTTS (Twin to Twin Transfusion Syndrome) during pregnancy, my husband and I breathed a huge sigh of relief. So when our boys were diagnosed with hearing loss a few years later, we were unprepared and overwhelmed. But truly, who can prepare for the unexpected?

As with my TTTS journey two years earlier, I found myself again amazed at the huge array of medical resources available here in Jacksonville for our specific situation. Need a pediatric ENT? There are several in private practice, as well as the great doctors at Nemours Children’s Clinic. Audiology and Speech Therapy? Again, several to assist you. And of course Early Steps, Florida’s Early Intervention program (serving children with special needs or developmental delays from birth until age three) to help you navigate through all of the processes.

We also received Speech Therapy services through Early Steps until the boys aged out of the program when they turned three. When it was time for the boys to attend preschool, we discovered that there is a nationally known school in Jacksonville that teaches deaf and hard of hearing students to listen and speak. The Clarke Schools for Hearing and Speech has a campus right here in Mandarin.

Those early days after diagnosis were scary and filled with uncertainties. What if their hearing loss became worse? So far it has remained stable, but I am more comfortable with the possibility than I was a few years ago. Will they ever speak, and be understood by someone other than myself? Oh, the conversations these boys have with random people they meet in the grocery store! Would they be stared at because of their hearing aids? They’re identical twins. They attract attention wherever they go. Side note: Please don’t stare. Instead, ask questions. Or let your kids ask questions. Cole and Jake would love to tell you about their hearing aids and how they help them to hear.

Was I devastated at the diagnosis? Of course. Was I also relieved that it was “just” hearing loss? Of course. Do I think my boys are amazing just the way they are? Of course. But do I also wish things were different so I don’t have to watch them struggle to speak clearly, strain to hear in many situations, and face probable challenges in their years of schooling ahead? Of course. These are just a few of the conflicting thoughts and emotions that I, as a special needs parent, face on a daily basis.

And now, a few months shy of turning five years old, Cole and Jake are thriving. They are in the pre-K program at Clarke, and after just a year and a half there they have gone from barely speaking to where we are now… already considering the possibility of mainstreaming them next year for Kindergarten. They speak in sentences, they have full conversations, they love music, and they are getting ready to start playing soccer in just a few weeks. They are happy, healthy, crazy, funny, rambunctious little boys. They just happen to also be hard of hearing and wear hearing aids.

On March 7^th, our family will be participating in the Kilwins Ice Cream Run: a 5k race and 1 mile fun run at the St. Johns Town Center. All proceeds will benefit The Clarke Schools for Hearing and Speech in Jacksonville. Join us for this fun event that will raise funds for Clarke and their mission to teach children, just like Cole and Jake, who are deaf and hard of hearing how to listen and talk.

In addition to our neighborhood groups, we have created a JMB Moms of Special Needs Children as a way for moms to connect, share information, and support each other!