The Missing Smiley Face: A Journey To Hearing Loss

The journey to Emma being diagnosed with hearing loss was frustrating to say the very least. It started shortly after her first birthday when she had not really started to speak clear words. But we were told by her early intervention teacher that they did not worry about speech until the second birthday. Fast forward to her second birthday, when Emma still had only about four spoken words and a lot of gibberish. We were sent for a hearing test before her first speech evaluation.

The audiologist informed us there were concerns about her hearing and that we needed to go to an Ear, Nose, and Throat doctor (ENT) soon. We were shocked! We had no concerns about her hearing until then. So, off we went to another specialist. He decided she had fluid issues in her ears and we placed tubes in her ears a few weeks later. We started speech shortly after that and thought all would be good. We trusted the doctors and therapists around us.

Progress was slow with speech, but we were told over and over again that with her other medical issues and delays it would take time for her to catch up. She had been through so many medical procedures that her body had to heal and play catch up. So, we faithfully trudged on with weekly speech and prayed it would all click into place. Then, at age three she started in our local school system at a community preschool. She got all new therapists and I remember her speech teacher mentioning her hearing once or twice. But she also agreed her struggles were due to her low muscle tone and things would get better. Luckily, at this point she had a few more words, and was able to use signs and pictures to help out as well.

Fast forward again through the two wonderful years at her community preschool. Emma was about to start Pre-K at a new school. She was five then, but her speech was not great at all and she still had less than 50 words that were understandable. She had also started to talk really, really loudly and got very upset when you did not understand her wants or needs. We made yet another appointment with her ENT and brought all of this up to him. He tried to blow all of this off as part of her global delay (I really hate that term by the way), just like he had on the many previous visits since getting her tubes in place three years back. But we kept asking and asking so he decided to try some more testing.

She first failed the behavioral testing in a sound booth, and then they sent us to the hospital for an auditory brain response test or an ABR for short. We were aware that she likely would have hearing loss, but were very shocked when they came out to tell us that she had severe to profound loss in both ears. Then, words like hearing aids, sign language, cochlear implants and deaf starting flying. We started our whirlwind summer of appointments for hearing aids, new speech evaluations, and appointments to see if she would qualify for cochlear implants. The last three months have been crazy as we have learned to adjust to having a child with a hearing impairment and finding our footing on this new crazy journey.

School started in August with Emma sporting two new pink hearing aids with glitter ear molds. She had them only a week before school but was doing great. From day one she has had an amazing team surrounding her in her school, and they are working hard to help her adapt and learn. Her speech is taking off!! At this point she is doing so well, that we are not on the list for cochlear implants as first thought.

Our journey took three years and lots of struggling, but it was all worth it. Especially when you get a note home that Emma only got one of her two smiley faces for that day, due to her talking too much! Yep, that is right. My child with a hearing impairment was talking too much! The teacher and I were so proud of her newly found voice, but she had to learn to be quiet during rest time. However, we were both grinning from ear to ear while we discussed her missing smiley face. To me it was a sign that things were going to be okay and that my sweet girl had finally found her voice.

Way to go Emma! Talk on sweet girl! I do not mind the missing smiley face at all.

Rachel Zook is mom to Emma, who is an amazing five-year-old. She has multiple medical problems including newly diagnosed severe to profound hearing loss in both ears.  However, that does not slow her down. She is also a mom to a handsome son named Taylor who is seven months old. Her greatest joy is caring for her two kids, her husband and her home.