As Shannon M.’s son, Indy, starts his first day of mainstream kindergarten, she can’t help but think of the day the nurse told her that her son was deaf. Having no prior connection to hearing loss, her family started learning sign language because they didn’t know cochlear implants were even an option. When they did learn about the technology, they recognized the opportunity for their son to hear, opening a future that was best for their family:
“It was 2 a.m. I felt a gentle shake from the nurse, and then came her words: ‘Do you have a history of deafness in your family?’
I had just given birth to our son, Indy, the day before. Her words echoed in my ear. ‘What? What did you just say?’ It turns out my son failed the newborn hearing screening, not once but twice. Confused and angry, my husband and I chased her out of our room. We told her not to return without a pediatrician.
The next day, the pediatrician assured us it was no big deal. In his words, ‘babies fail this test all the time.’ The reality is that babies do not fail all the time. The test was an auditory brainstem response (ABR), which measured my son’s brain response to sound. At the time, I did not understand all the testing. With assurances from the pediatrician that my son would be tested again in 30 days, we left the hospital. However, the seed of doubt had been planted.
Thirty days later came quickly. We rushed to the audiologist and our son was given another test. HE PASSED! There were high fives! There were cries of joy! We left the audiologist’s office feeling relieved.
Fast forward six months, we are still having doubts about our son’s hearing. Well, I should say, my husband was concerned. I was in denial. I went to our pediatrician and expressed my husband’s concern. She did a simple finger snap test. My son’s head turned. ‘He’s fine,’ the pediatrician declared. Still knowing this would not satisfy my husband, I asked for a referral for a more official test. She would not give it to me.
I got home that day and decided to call a university audiology department near our home. I spoke to the audiologist about our concerns. She offered to do an ABR for a nominal fee. I scheduled an appointment. (You should know that at this point, I thought we were going to prove once again that our son was fine and my husband was wrong. My husband felt differently.)
The night before the appointment, my husband and I were casually talking when he truly expressed his feeling that something was wrong with our son. I was floored! ‘What are you talking about? He turns when I enter a room. He wakes up when I walk into his room at night. Why would he do that if he cannot hear?!’ To which my husband replied, ‘he does not respond to me.’
In anticipation of our ABR, I kept Indy wide-awake. I made sure he was very hungry. We got to the clinic. I started nursing him and he fell fast asleep; and then we did the ABR. Immediately, I could tell from her reaction as she read the waves on the graph that something was definitely wrong.
My son has auditory neuropathy in addition to his profound hearing loss. This is why he failed the newborn hearing screening twice, but then passed the otoacoustic emissions (OAE) 30 days later. At the time, I didn’t know the difference between one test or another.
Immediately, my husband, my mother-in-law and I started learning American Sign Language (ASL). We thought this was our only option. We went and visited the state’s deaf school. Again, thinking this was our only option. We started to immerse ourselves in anything and everything to give us an understating of hearing impairment. Sadly, not a single person ever mentioned cochlear implants to us.
It was my father who started talking about technology and hearing loss. He kept urging me to do some research. After hanging up with him on one occasion, I told my husband about my father’s persistence. My husband’s response was no. We are not going to ‘fix’ our son. I agreed with that thought, but I needed more information. I needed to know all the options that existed for our son. It is vital for families to know all the options that exist so they can make the decision that best fits their family.
I made an appointment with the University of Virginia (UVA) for an official diagnosis. They did a sedated ABR, which confirmed the auditory neuropathy and profound hearing loss. Then, I scheduled a second appointment with their cochlear implant team. I asked my husband to have an open mind.
As the door opened, we were introduced to an auditory verbal therapist at UVA. She got right to the point. Our son was a candidate for cochlear implants. She showed us videos of children with cochlear implants who were talking and going to mainstream schools. In those testimonials, my husband and I recognized an opportunity for our son. We could give our son the ability to hear.
We chose bilateral cochlear implants for our son; and we chose Cochlear because of their reputation, experience and history with the technology.
The week after activation, we started doing auditory verbal therapy. My husband and I chose listening and spoken language for our son. We are a hearing family that speaks to communicate. We wanted our son to learn to listen and speak the way a hearing child would. After doing our own research, we feel this mode of communication will best support his ability to read, write and communicate in society.
This road is not an easy one. One does not just have surgery and begin to talk. There are countless hours of therapy and work. Every moment becomes an opportunity to listen, learn and speak.
Each week, our auditory verbal therapist would work with me and my son on a new lesson or ‘brain training’ as she called it. Then, we would return home, teach these lessons to our family, and each of us worked with our son. Our older hearing and very verbal daughter became his most important language model at home.
This became our family’s new normal. Auditory verbal therapy around the table was part of our daily routine. This work happened daily for the next four years.
Today is Aug. 23, 2017. My son is embarking on his next journey: kindergarten. This is his first day of school in a regular classroom, just like his hearing peers. In fact, he tested at or above his hearing peers in all facets of development.
I look around and watch as parents kiss their kids goodbye with mixed emotions of how quickly their child is growing up.
For me, I cannot help but think about the day the nurse told me my son was deaf. I cannot help but think of all the amazing people who have been a part of our journey and dedicated their time and effort to my son’s success. Finally, I think about how hard our son and family have worked to make this moment possible.
As I kiss my son goodbye, I remind him to be kind and tell him how much I love him.
In a blink of an eye, he turns and eagerly joins the rest of his classmates without looking back.
My profoundly deaf son is now just another kid starting his first day of kindergarten.
And, I would want it no other way.”
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