Expert Tips for Parents with a Hearing-Impaired Child
The night my oldest child was born, she came out screaming…and didn’t stop. She screamed the entire night, so much so doctors and nurses were coming through to check she was alright. The only thing that pacified her even a little bit was a double-swaddle but she broke out of it within minutes, so round and round we went.
I remember looking at my husband across the hospital room, panic in both of our eyes, as it dawned on me: we had absolutely no idea what we were doing.
Just 16 months later, my son Sean was born, and the hospital room was a lot more peaceful. He was quiet in his bassinet. When one of the nurses left the room, the heavy door banging loudly behind her, and I watched Sean not stir at all. Not a muscle moved in his little body from the loud noise, and I knew in my gut something was wrong.
Suddenly that same feeling I got the night my daughter was born came rushing back, like we had no idea what we were in for.
There have been about a million moments like those ones since, feeling totally unprepared and out of my depth parenting both my neurotypical daughter and neurodiverse son. When I get really stuck facing the unknown, I ask myself, “What do I know already that can help me?”
I don’t have anywhere close to all the answers, but here are some I’ve learned along the way.
10 Tips for Parents of Hearing Impaired Children of ANY Age
1. You are your child’s first, best, loudest and most invested advocate. Your voice is the cornerstone of their care.
There are so many resources available to your hearing-impaired child, but the reality is it will fall to you to make sure those resources are being put to best use. Yes, their school has the equipment for the teacher to be mic-ed in class, but does the teacher know how to use it? Is your child’s seat position best placed to hear and see the instruction? The details are yours to manage.
2. Early intervention is the key, but it’s not the only factor.
Sean was in preschool when Covid hit, and deciding whether to take him out of school or not was agonizing. For his neurotypical sister, I knew the primary risk factor was exposure to the virus. But for Sean, I had to weigh that risk against what it would cost his progress to lose opportunities for socialization and classroom resources. The decision felt paralyzing, but we didn’t have time to get stuck on it. We had to act.
3. It’s ok (and important!) to consider the whole-family dynamic.
Family units with special needs have regular needs, too. I grew up with a special needs sibling, and I’m always thinking about my neurotypical daughter, whether she’s getting all of her needs met even though her needs are less atypical. Is she getting the one-on-one time with us that she loves so much? Am I fostering her relationship with her brother so there’s no resentment there? Am I connecting with my husband so his voice is also being heard? I have professional experience with neurodiversity, yes, but I don’t want my voice to dominate our decision-making. Am I taking time for myself? My relationships? Ultimately, what I want is balance, and weighing our family’s regular needs against the special ones requires a lot of flexibility, but it’s crucial.
4. Invite questions and celebrate curiosity.
So much of your advocacy work is community-building around your hearing-impaired child so they are surrounded by people who understand their needs and can help support meeting them. Friends might ask the wrong questions before you realize…there are no wrong questions. As long as someone is trying to understand, encourage their curiosity as another opportunity to build your child’s support network.
5. Every moment is a teachable moment, and there is so much left to learn.
The other day Sean’s teacher called to tell me another student had been touching Sean’s hearing aids. When she told me, a light went on. This other child was attempting to interact with my son, wanting to understand his aids, wanting to understand hearing loss, and that moment was an opportunity to normalize Sean’s impairment. She and I talked about how to encourage moments just like that one, building curiosity and inclusion in the classroom to support the neurodiverse community of Sean and his peers.
6. Remember hearing loss is unique and doesn’t fit into a single category.
Becoming an expert on your child’s unique category of loss is your responsibility, but becoming an expert on every kind of hearing loss is just going to exhaust your precious energy reserves. Educate others about your child’s category and let them learn about other types elsewhere. Don’t take on more work for yourself than you already have to. It’s enough already.
7. Let your child navigate getting their own needs met as much as possible.
Preparing your little one to be their own future advocate is also part of advocating for them. It gives them a sense of agency over their own care which you’ll continue to nurture as they grow with it. We go to the same Starbucks every Saturday morning, and it’s loud and chaotic inside, but Sean handles his own order, and the baristas there always keep their eyes on him. If they don’t understand him, they don’t look to me to translate, but ask him to repeat himself. It gives him a sense of self-confidence and independence that I want to keep fostering.
8. Normalize your child’s hearing loss in whatever ways feel right to you.
Our family calls Sean’s aids his “ears.” The experts say not to, to call them aids instead, but it just feels right to me that we call them his ears. I want him to feel a sense of real ownership over his technology, to feel it as an extension of himself because it is. Normalizing the tech by naming it that way makes sense to me and feels right to our family. Some kids need glasses to read or cushions to sit still, and my son needs his ears.
9. Remember preparation is a process.
It’s not a switch you can flip on and off. It’s one foot in front of the other, gathering information, making mistakes, correcting mistakes, getting a better sense all the while of how to move forward. I wish I could flip a switch to get myself prepared for the next unknown, but it just doesn’t work that way. The process is the whole point.
10. The only curve you’re learning on is your own.
It can feel almost impossible not to compare milestones, norms, successes and perceived failures with other people’s families and other people’s children. Don’t fall into that trap. When I find myself back there, and it happens more than I like, I turn to gratitude. We are a family doing things our own way. I love my family, and I love our way.
We found out early that Sean had hearing loss. About 10 days after he was born we had an outpatient appointment to do the third and final hearing test before the dreaded referral. Sean had already failed his two in-hospital hearing tests, and that day he failed the third.
The tears came before we made it back to our car.
My husband, Chris, couldn’t understand what I was crying about. “We still don’t know anything,” he told me, trying to reassure me. But I knew enough to cry. I was crying for my family, but especially for Chris who couldn’t see what was coming our way.
Our first appointment after we learned Sean had a hearing loss, I told our pediatrician I wanted all of the research. I thought I was ready at that moment to learn everything I possibly could on the subject. He told me to take a breath. “Let’s go through this process together,” he said. I think about those words a lot. To take a moment, a breath, and remember there is a process to follow. And I don’t have to follow it alone.
There are resources. There is support. There are others walking this path with me, up ahead of me, and we’re all moving through this together. We can all help each other.
We’re building a different kind of community, one with neurodiversity, one where conversations around the dinner table are about audiograms and test results and milestones that to neurotypical families might not look like milestones but to us are cause for major celebration.
We’ve been working a lot with Sean on articulating feelings. The other night I was putting him to bed and I asked him how he felt. It hadn’t been a perfect day. It rarely is. But he looked up at me with his head on the pillow and said “I just feel happy,” then closed his eyes, the smile still on his face.
He told me exactly how he felt the moment he felt it, a major milestone he’d been working hard to achieve.
I told him goodnight, and then I celebrated.
