What It's Like Parenting A Child With Hearing Loss
As parents, I know most of us are hard on ourselves on a daily (probably more like hourly) basis. There are so many pressures in this world, so many ways we can feel like we are failing. We’re running late, forgot the bake sale, missed a practice, lost the baby’s lovey, kids haven’t bathed in a week, fast food dinner for the third night in a row… the list never ends. Add in the world of social media perfection and perceived effortlessness- how does anyone feel like they are doing anything right as a parent?? I sure don’t- and parenting of a child with special needs really puts that under a personal microscope.
I actually hate the phrase “special needs” simply for the fact that every human has special needs. Challenged also rubs me the wrong way. Perhaps accurate, I just never feel like it describes my child in her entirety. Let’s not forget that the labels aren’t being attached to me, they are being attached to a sweet child. One who is too young to even know she is figuring out her own identity. Whatever, the label, it’s adding layers of complexity to parenthood and therefore giving me extra reasons to feel like I am doing it all wrong.
My oldest was diagnosed at the age of 2 with mild to moderate bilateral hearing loss. It’s suspected that she has had it since birth, perhaps the result of my preeclampsia while pregnant with her or the ridiculously long delivery, however the cause is officially “unknown”- not that it would change anything. She had been diagnosed with a club foot in utero, and I think a lot of attention went that way once she arrived. She failed her newborn screening twice, but as a new parent, I gladly accepted the dismissal of the test and the reasoning that it was fluid in the ears or perhaps a cold.
She struggled with ear infections, strep throat and sleep apnea. Her father and I divorced not long after she turned one, and it was easy for suggestions to be made that the health issues were a result of that. My intuition kept me pushing, and we finally got some answers that made sense. A visit to the ENT discovered her tonsils and adenoids were beyond huge and needed to be removed. Add in tubes for those pesky ears and we were promised life would be much better- and it was! Recovery was a few weeks long, but it was evident that her sleep patterns and breathing were much improved. We went back in for our checkup after the surgery, and our rockstar of an ENT quickly started to question my daughter’s speech. At first, I thought it made sense because of her tonsils but I became puzzled when she kept asking me questions like “Does she stand close to the TV?” and “Do other people know what she is saying?” The questions seemed leading and not in tune with the surgery. She was direct when she said, “I don’t think she can hear”. My mouth opened and my heart sank.
We then went in for testing with an audiologist. In a sound booth, she sat on my lap with headphones on. I could hear the sounds playing through the headphones - but my little babe showed no recognition of the sounds. The minutes felt so long. I wanted to shake her, make her pay attention, but it was obvious, that this was how her world was, and it was devastating. I felt like a complete failure as a parent that I didn’t recognize it.
From there she had a sedated auditory brain stem response test (this tests the level of loss by bouncing sound waves off of the ear drums and checking the brain’s response to them) ear mold fitting and actual hearing aids. Recently, it was the six-year anniversary of the first day that she wore hearing aids. Crazy to think of all the ways she had to catch up. Today, she is eight and a half and aware that she is different. She no longer likes to wear her hair up in a pony. She tends to be over sensitive to younger kids’ commentary, regardless if it is actually about her or not. There are IEP’s and special arrangements and limitations. There are catches and course corrections. There are moments where you have to ask if it’s the hearing loss or the child.
If you don’t know anything about hearing loss, you’re not alone. Some of the things I have found through being a parent of a child with hearing loss have really surprised me. How about the actual function of a hearing aid? I think the perception is that once it’s in, all is well. Sure, it amplifies sound - but it amplifies ALL sound. My child was in a class of 26 first graders last year. 26. How do you think things went for her when it was a group activity, or they had something exciting happen? Do you think the hearing aid knew to isolate the one thing she wanted to listen to or that it just made every sound louder? The amount of energy it takes for someone to decipher what is happening and actively hear is exhausting- and that is on top of just being a kid. Another surprise is that finding others in the same boat isn’t as common as you think. Through the past six years, Maddie has had two interactions with kids who have actual hardware to assist with their hearing. One was four grades above her, the other wore a cochlear implant and was pulled from mainstream after a few months. We don’t live in a small town- it’s just not common for kids to have hearing loss. The varying degrees of hearing loss and the different communities creates further isolation. I am sad that she doesn’t have another friend or two who can talk with her about what they are going through and feeling on a daily basis. No one should feel alone like that.
I think friendships are the hardest to navigate when it comes to hearing loss. Family is patient, family is sensitive, and family is reminded often of her needs. We have gotten so lucky to have some really amazing people put in our lives that love her in the same way we do. She grew up with a friend next door that loved spending time with her and never made her feel any different yet is truly protective and conscious of her needs. Neighborhood kids never leave her out and often ask to play and go out of their way to include her. As she gets into new places, I notice new friendships can be harder to navigate. She loves having one on one time, mostly because the friend spends the time directly conversing face to face with her. Once you start to add in even one more friend, the noise and action increase, the conversations move faster, the speaking isn’t always face to face. I usually can see it on her face how hard she is working in those situations.
I told a friend today that I get frustrated because hearing loss is invisible. The challenges or hurdles she has are very real, but if you just look at her, you’d most likely not know that things are harder for her. She may not hear you say hi. She probably doesn’t hear you call for her when you’re behind her in the hallway. She might be so focused on what she is trying to hear, she misses everything else. Her speech sounds pretty similar to the other toothless eight-year olds in her class. Without a large scarlet letter, you don’t see her world and how it’s different than how you see it to be.
While tough times are there, her hearing loss has shaped some amazing things inside of her life. She is focused and intentional. She advocates for herself in school like a grown up. She’s eager to do well and when she gets comfortable, she goes full throttle. Her hearing loss lead her to horses and riding them has been a source of great joy for her. I continually have people tell me what a wonderful and sweet girl she is. I’d like to think that had she never had hearing loss, I would have spent just as much time with her as I did throughout this journey. I am not sure that is the case honestly. Maybe I misstep as a parent, but I am present, aware and involved in my child’s life.
Raising a child with a need or needs different than the norm presents all sorts of extra challenges that no one can prepare you for- not that anyone is really prepared for parenthood to begin with. I take lots of deep breaths and there are days I kick myself. There are also days I can appreciate the small things because of the bumpy road we’re on. No one has the same journey and I do believe you are doing parenthood right if your child has no doubt that you’re the one who will be by their side. No one will forgive your mistakes and love you for you like your child.
If you’re curious as to what the world sounds like to someone with a hearing loss, please check out this link from Starkey Hearing Technologies.