I’ve since learned that being vocal about hearing loss matters especially if you were once a parent new to hearing loss.
Our three-month-old, Cooper, is profoundly deaf. When I heard that for the first time, when it became real to us, I was terrified. In retrospect, I think much of that fear stemmed from my lack of knowledge. Hearing loss was a scary, unknown concept to me, as I grew up with normal hearing. I didn’t know what that diagnosis meant for the rest of his life. This is where being vocal about hearing loss has made a difference.
Seven weeks later, Cooper’s diagnosis feels much more manageable. Sure, there are still some unknowns and it’s still unnerving to think about the obstacles our little boy will have to overcome. But I’m not terrified like I was at the beginning — and so much of that I owe to other people’s willingness to talk about their own experiences with hearing loss.
Because of this, I’ve come to realize just how important it is to speak about hearing loss and to be a source of education. Here are a few reasons why.
After Cooper’s diagnosis, I sought out other parents who had been in the same boat. I Googled and searched on Facebook like crazy. And by doing so, I crossed paths with a few people who have been instrumental in helping me realize that hearing loss doesn’t need to be scary. Hearing from those people about their own experiences pulled me out of the dark place I’d felt myself sinking into. I realized that if they’d done it as parents, so could I. If they hadn’t been willing to be open about their experiences and share with me, a total stranger, I’m not sure where I would be emotionally.
“If they hadn’t been willing to be open about their experiences and share with me, a total stranger, I’m not sure where I would be emotionally.”
For those who don’t have personal experience with hearing loss, it can feel like a new and scary world. I know for me personally, learning all I can about a topic makes it feel more manageable. Other people, strangers on the internet, helped educate me about this completely new thing. I learned about hearing aid maintenance, the structure of the ear, how cochlear implants work, what speech therapy entails — all on the internet, because other people had taken the time to put their knowledge into words.
Without knowledge, it’s hard to know how to advocate for your child (or for someone else close to you). By being open and honest about your own experiences with hearing loss, you are likely gaining the knowledge you need in order to be an effective advocate. And not only that, by being open, you are helping others learn how to advocate as well. Being an advocate as a parent is a huge responsibility and can be a bit intimidating, but it is vital. Your child needs you to stand up for them and fight for them until they gain the skills to do it themselves. And even then, they still will need you. You will always be your child’s biggest hero, especially by learning to advocate for them early on.
“By being open and honest about your own experiences with hearing loss, you are likely gaining the knowledge you need in order to be an effective advocate.”
By being an active voice in any community, you are opening yourself up to continuing to learn new things. Being involved in the hearing loss community allows you to meet new people and hear about their experiences, which in turn could benefit you in various ways. You’ll find that you never know everything there is to know about a topic, and remaining involved in a corresponding community allows your knowledge base to keep growing. And, by continuing to speak out, you can pass that knowledge on to others in the same situation. Knowledge has a ripple effect that way.
I know that for myself, this couldn’t be truer. After Cooper’s diagnosis, I was a wreck. I cried and cried and was honestly just angry. Writing was one of the first things I turned to in order to bring myself some peace. Over time I’ve learned that writing and sharing my personal experiences is how I work through them.
As a parent of a deaf child, I have a lot to make sense of, so sharing seemed to be the natural way to go about it. Through sharing these experiences, as well as other things that have happened in my life, I’ve learned there is something freeing about opening myself up and being vulnerable. Doing so has led me to some of the greatest resources — ones I never would have come across had I not taken the time to let my guard down and be honest. Even though it may be scary, I encourage you to let your defenses down and try to connect with others, whether through writing, messaging, meeting in person, whatever it may be. You’ll likely find it healing.
I know I’m still new to this world, and I have so much to learn. But so far I’ve found people to be invaluable resources. Taking the time to be vocal about hearing loss, whether it’s your own or someone close to you, has a number of rewards for both you and others. If it sounds scary to you, start small. Talk to family members and a few friends, or start a blog but don’t share it with anyone quite yet. Do what makes you comfortable, and then when you feel ready, start to branch out.