Reflections on being a mom of a child with hearing loss

Almost daily, I’m being asked questions about my son who has hearing loss, but more specifically, he is deaf. People are interested in learning about the obstacles, the victories, the diagnosis and how he’s doing in general as he is in his first year of school. I thought I’d share a bit about our journey for the curious.

The Diagnosis

When Beckett was born, he immediately found himself in the NICU unit with a pneumonia and another unidentified virus. He battled these illnesses for nearly two weeks as doctors tried to get his oxygen levels under control. Eventually he was well enough to come home, but he failed his newborn hearing screen before his exit. Doctors told us not to be too concerned as he was still overcoming the pneumonia which could be leading to his hearing issues. We left praying that the doctors were right.

We were referred to a local hearing center a few weeks later to re-test his hearing. At that time, it was determined the our son indeed had hearing loss. To the extent of that hearing loss, it was still unknown. What we did know was that our child had bilateral profound hearing loss. We were devastated. Our son would eventually go on to have a sedated ABR, but in my heart I knew. I knew our son was deaf, and that our hearing loss journey was just beginning. We would also be sent to Mott’s Children’s Hospital to undergo genetic testing and a sound booth hearing test, where everything was again confirmed. Our son was born deaf, and his blood work showed that he had Connexin 26. Connexin 26 mutations are the most common cause of congenital sensorineural hearing loss. It’s a protein found in the gap junction beta 2 (GJB2) gene. This protein is needed to allow the cells to communicate with each other, but when there is not enough of this protein, it can damage hearing or in our case deafness.

We were relieved to have the diagnosis, but I’d be lying if I said we weren’t absolutely terrified. Fortunately, his ABR test showed that the physical characteristics and structure of his ear were normal making him a candidate for cochlear implants.

Beckett did undergo cochlear implant surgery in 2018, and he’s been thriving thanks to his hard work, our advocacy and his therapists.

The path to acceptance and advocacy

As soon as we received Beckett’s diagnosis, I immediately took action. I dove into researching all of the available options for him. Taking action was a coping mechanism for me. I was still terrified and devastated, but I knew in order to get our son the support his needed to thrive, I needed to accept his diagnosis and do everything in my power to advocate for him. I started connecting with other parents of children with hearing loss. I asked thousands of questions. I research all of our cochlear implant options. We immediately connected with community support for our son who almost immediately started speech therapy. We did everything we could think of to get our son on the path to success.

I looked for any kind of support we could receive. Even as we continue in our journey 5 years after the initial diagnosis, I’m continually advocating for his well-being. I don’t think that will ever change. Being an advocate for our son is one of the most important jobs as his mother.

Additionally, there are people out there that are strongly against cochlear implants. I cannot begin to tell you how many messages I received from people berating me for our decision to get Beckett implanted. I was called a “terrible mom”. People told me I was “playing God” by wanting to provide the gift of sound. It was awful. I tried hard to ignore these messages, because I knew in my heart that we were making the right decision for our family. Also, I believed that God created really smart people who were given the tools to provide the gift of sound.

There were many nights I cried myself to sleep, however.

Be Vocal, Share the Experience

Another coping mechanism for myself was writing about our experience. I was completely open and share our raw journey with others. When Beckett was first diagnosed, I didn’t know anyone who had a child with hearing loss. I felt alone. As I dove into research, I found a tribe that I could bounce ideas off of. I could share our very real fears and our triumphs. I continue to use this tribe 5 years later.

By being vocal, I’ve been able to help bring comfort to other parents going through a similar journey. I’ve spoken to other moms, specifically in my area, about their child’s diagnosis. I felt their fears as I had the same ones in the beginning. I’ve been open with other parents. I’ve been a resource to our local institutes via support, providing material for presentations and our willingness to share our journey.

Where we stand today

Beckett entered mainstream kindergarten in the fall. He has a speech therapy he still meets with once a week. He has a FM device hooked up to his cochlear implants which allow his teachers to speak “directly” to him. the FM system helps to minimize sound which then helps Beckett to get better sound when around other students.

He also has an IEP which ensures he gets any other necessary support he needs to thrive which includes preferred seating, additional time for assignments and “rest” time when needed. Children with hearing loss often suffer from listener fatigue. Our therapists and our family refer to this as hearing fatigue.  It’s a phenomenon that occurs typically in children or adults with hearing loss after prolonged exposure to an auditory stimulus. Symptoms of hearing fatigue includes pain, loss of sensitivity, tiredness and discomfort.

Beckett is thriving in school despite his hearing loss. He’s a happy child who loves his cochlear implants. He wants his “ears” on first thing in the morning, and when’s he’s tired, he takes them off.

We know basic sign language, but we are  committing to learning more so we can have a better understanding of ASL. I want to immerse him his deaf culture as much as possible, because at the end of the day he is, and always will be, deaf.

Other crappy things to consider

One of the most frustrating aspects of being a parent of a deaf child or a child with hearing loss, is that there are some people who will not try to understand more about your child’s diagnosis. They won’t go above and beyond to understand what hearing fatigue is and will resort to calling your child a “behavioral nightmare” because they confuse their tiredness with poor behavior. You might get ridiculed as a parent for your child’s “bad behavior.”

You might have family and friends who refuse to learn ASL. It is another language, so it’s a lot of work.

I’ve gotten into arguments with family members over some of these things, but I’ve always stood my ground. My child can be bad, like any other five year old, but what people  fail to see is how much harder my son has to work to hear and process words. His little brain is overstimulated daily, so when he gets frustrated or says “what” a lot, I pray that people show him both grace and patience.

We’ve also battled the importance of our son wearing his devices with others.  Especially when he was first implanted, it was almost an “inconvenience” for others to make sure he had his devices on. We encouraged, even begged others to take his hearing devices seriously. It was an uphill battle, but fortunately as Beckett has gotten older, he can now put on his own devices and advocate a bit for himself.

I mentioned it above, but there will always be people out there who will criticize your decision to get your child implanted. It won’t be easy, but knew in your momma heart, that you made the right decision for your family.

My son is also very, very attached to me. Mommas, this is normal, especially if you’re the main one that has worked with your child on their therapy. I think it’s also just a son-mother relationship. I get ridiculed for this from time to time, but I don’t let it bother me too much. I do as much as I can to ensure that he also goes to his father for things, but at the end of the day when he’s not feeling it, he just wants his momma.

Lastly, deaf kids can do anything. Don’t hold your child back due to fear. Our son has played t-ball. He wrestles and plays rough almost daily. I mean he is a boy, and we have another son.  I used to think that Beckett would be so limited to what he could do as he grew up. Sure, there are certainly things we need to consider to keep his “ears” safe, but we try to let him participate in as many “normal” activities as possible. We don’t consider him “disabled” and we certainly don’t use his diagnosis as a crutch or an excuse.

**

Beckett’s hearing loss journey has been both devastating and beautiful. It’s been extremely hard, and also very difficult. We’ve had amazing support and less than stellar support. We have good days and we have bad days. What I absolutely know is that it’s been an incredibly humbling experience It has taught our family how to be more patient, accepting and  understanding. We have worked hard together as a family to ensure Beckett has everything he needs to thrive. Have faith. This journey doesn’t need to break you.

And guys, I don’t have it all figured it out. I struggle, daily. I get frustrated. I get overwhelmed. Understand this is part of the process, and know that it’s ok to not have it all figured out all of the time.