‘He jumped out and screamed boo during hide and seek. She never turned around; she was still wondering where he went.’: Mom details her and daughter’s journey being hard of hearing

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“When I was younger, people thought that I purposely ignored them. Sometimes they say it was selective hearing. I can’t deny their selective hearing theory because that’s quite normal for young kids. Most of the time, though, I couldn’t hear, especially if they weren’t in the same room as me. My speech wasn’t perfect, but it wasn’t horrible either. I think the only reason my speech was good was because I taught myself to lip read.

When people talked to me I would say ‘what’ or ‘huh?’ A lot!! It wasn’t necessarily that I didn’t hear them, because I knew they were talking. The sounds were just muffled or the speech would be unclear. The way I have always explained it was that it’s more like people were whispering, that’s the easiest way to explain it for others to understand. I would catch some of the speech in the words, but also miss some. Unless I read lips I wouldn’t be able to distinguish the words.

My mom had her suspicions that I had Hearing loss when I was 2 years old. I would sleep through a stereo blaring, but my 3 year old brother would always wake up. I wouldn’t react when things fell on the floor. My pediatrician kept giving me hearing tests and I would always pass them. Turns out I knew how to follow the rhythm of the hearing test, and because of that I kept passing the test. Of course, I wouldn’t have known the rhythm without some help from the person giving me the test. In kindergarten, my teacher recommended seeing a specialist. That’s when my mom took me to the children’s hospital. Failing the hearing test resulted in us finding out I had sensorineural hearing loss. It is a hearing loss caused by damage in the inner ear or the nerves from the ear to the brain. This type of hearing loss in children can be caused by infection or congenital abnormalities. Mine is a congenital abnormality, which means I was born with my hearing loss.

I remember my audiologist explaining my hearing loss to me in a way a 5 year old might be able to understand. She showed me a poster on the wall in her office. As she named the parts of the ear she pointed to those parts. She told me that the hair in your ears were receptors. Those hairs pick up sound and send it to your eardrum, your eardrum sends the sound to your cochlea, the cochlea has hairs that transmit the sound to the brain. She said my cochlea hairs in the cochlea were either damaged or I didn’t have enough. I didn’t see my hearing loss as a problem, and I still don’t. I’ve always seen it as that’s just the way God made me. I know there was a little sense of relief when I found out about my hearing loss because there were hearing aids to help me hear. There was also proof that I wasn’t intentionally ignoring people. I ended up having to repeat kindergarten.

young girl smiling
Courtesy of D.M. Fimple

In middle school I met a teacher that would teach me Sign Language. I was pulled out of my English/Reading class to go to her class so she could teach me, while my original class got to read whatever book they wanted for the first part of class. I was kind of  mad because reading was my favorite thing to do, and they were interrupting my reading time. Anyway, when I got to her class she had started to sign to me and I told her that I didn’t use sign language and that I could hear and talk. I vaguely remember this, and I know I said that but knowing what I know now I can’t believe I said that. Then again, I guess I can believe I said that, and I know there are quite a few factors to why. I tried to live in denial. If I didn’t acknowledge all the hearing loss and the fact that it was getting worse every six months it would just stay the same. I wanted speech therapy and an FM system to be all I needed. Anything more would mean more attention for me, which would make me a bigger outcast than I already was. I tried to keep my head down and stay to myself because, let’s face it, kids could be mean.

Until I walked into the class I hadn’t met anyone else with a hearing loss, especially not anyone my age. I didn’t even have interpreters in elementary school. I was new to the Deaf world. I’m glad to have been able to join that class. I had made friends and learned a language I didn’t know I needed. I learned about a world that I was completely oblivious to, one that everyone should know about. I thank God, I learned Sign Language despite my initial reluctance. It has helped me a lot, and though I don’t use it as often as I should, I will always have a way of communicating. I know we grow and learn as we get older, but part of me is still disappointed I made the comment about not needing to sign because I could hear. I had unintentionally made a judgment about Deaf/HoH people probably not even realizing that I had inadvertently judged myself in the process.

Sign Language helps me communicate with my daughter Liana. Summer times mean oceans, pools, and water slides. It’s when we can’t wear our hearing aids because they can’t get wet. Most of the time she’s the only one I can communicate with when swimming and water is involved. Some of my friends and family know a few Signs just enough to let me or Liana know simple things. If you try to sign to Liana and your signs are wrong she won’t hesitate to correct you. Lots of times, summer also means vacation, which usually means group conversations, which can be a lot harder on Hard of hearing people. When I get lost in a conversation and can’t follow it because there’s too many people or maybe too much background noise, I sometimes just nod and act like I know what they are saying. It’s like a sensory overload and I can’t keep up. Sometimes it looks like I’m being rude but that’s never my intention. It’s a learned habit because sometimes others get annoyed when you ask them to repeat their conversation.

mom and daughter signing
Courtesy of D.M. Fimple

There are different ways of identifying in the Deaf world. I have always identified as Hard Of Hearing or Hearing Impaired. That was before I realized that Hearing Impaired is actually offensive. It implies that my ears are broken. Growing up I didn’t quite see it that way. In my defense doctors, teachers and schools still label it hearing impaired. Deaf with a capital ‘D’ is used to refer to either Deaf culture or those who are born Deaf. Deaf with a lowercase ‘d’ is used to refer to those who become deaf later in life. I have been told that how you identify in the Deaf world is your choice. I feel I am both Hard of Hearing and Deaf because without my hearing aids I can’t hear. Sometimes I feel like in the deaf world if you identify as Hard of Hearing they see you as Hearing. If you identify as Hard of Hearing in the Hearing world they see you as Deaf, different or dumb. When meeting strangers I didn’t  point out that I’m deaf or Hard of Hearing unless I knew the person has hearing loss too. It’s not because I’m embarrassed of my deafness or hearing aids. It’s just that people treat you differently. I also watched a lot of lifetime movies as a kid and I always felt the need to trust those that I tell about my hearing loss. To me, there is always a possibility that someone would use my hearing loss against me.

Since the COVID-19 pandemic I have spoken up a lot more because I don’t want that fear to make me miss out on things. During the pandemic I bought a mask that said ‘hard of hearing please be patient.’ I wore it to the movies with my fiancé, and when the movie attendant read it she asked if I wanted an assisted listening device. I didn’t even know they provided those. So I realized not speaking up made me miss out on some benefits. Sometimes my friends and family would introduce me and let others know about my hearing loss. It used to bother me. I know they meant well, but I never actually told them why I didn’t like it. When telling hearing people that I’m Hard of Hearing they seem to think that speaking louder helps me hear, but that’s not the case. Talking super slow so I can read lips doesn’t help either. When we learn to lipread, we read lips while people are speaking naturally. When we say slow down and speak clearly, we mean for you to make sure that the sounds of one word doesn’t mix with another. Therefore, slow down enough so each word is pronounced separately. I went to the hospital one day because I fell and hit my head. I ended up needing stitches. My aunt and mom were there and told the nurse I was Hard of Hearing. The nurse put his mouth to my ear to ask me questions and I know he was just trying to help, but in reality he made me mad. I have hearing loss, I need to see your mouth if you don’t know how to sign. It’s why some Hard of Hearing people prefer to just say they are Deaf because we have to work extra just to explain things or we have to work extra hard just to read the words that come out their mouth. Most deaf kids are born to hearing parents, yet so many hearing individuals are unaware of what Deaf and Hard of Hearing people go through.

Liana was diagnosed at 2 years old. She passed her hearing test as a newborn.

One night, my fiancé and I were playing hide and seek with her right before bed. He hid behind her door in her room and I followed her, asking her where Chris was. She ran in her room and while she was facing the wall he jumped out from behind the door and screamed boo. She never turned around; she was still wondering where he went.

young girl holding onto a tree with hearing aids
Courtesy of D.M. Fimple

That’s when we knew we had to get her hearing tested again. We ended up having to do an Auditory Brainstem Response test because she was so young and it was the best way to know how much hearing loss she had. I think they said she had moderately severe to profound hearing loss. She needed hearing aids to help her hear. We always knew that was a possibility because of my loss. I was told by the doctor that they couldn’t say it was hereditary because they didn’t know that much about sensorineural hearing loss. I recently did research, and they think a certain percentage of sensorineural hearing loss is actually hereditary. I knew the possibility of her having hearing loss because of my own so It didn’t bother me, it was something I learned to live with so I knew she would be okay too. It’s when she got older that I started to struggle with just how to help her with learning some things.

When she got her hearing aids her dad, Memaw, Mimi, and I were there. She was in her Memaw’s lap when the audiologist put the aids in her ear. They all said she had ears like mama and she kept repeating like mama. After she walked to her dad pointing to her ear saying ‘see.’ She looked at her Mimi and pointed to her ears showing them off.

She is a candidate for cochlear implants, just like I am. It’s one of the biggest debates among the deaf world. I have known people who have gotten a cochlear implant, some it works for and some it doesn’t.  If it doesn’t work, then you can’t go back to regular hearing aids. That’s why I never decided to get them. For my daughter, I don’t think it’s my choice to make, I feel it should be her choice. I have had her in early childhood education since she was 2 years old. A program that my mom didn’t know about until I was in middle school. She was pretty upset that the schools and doctors never told her about it. I could have been learning sign language at a younger age like Liana has been able to. Her path has been a little different than mine because through my experiences we have learned about some of the programs available. I was taught orally during my elementary years, Liana has had the benefit of sign language. She is technically learning three languages at once. She is learning spoken English, American Sign Language and Sign Exact English.  Signing Exact English is to help her learn to read the way books are written.

I think this is why she mainly prefers signs over spoken English. With her beginning being different than mine, I feel sometimes it’s harder for me to help her in some ways. I think that’s also why it’s harder to explain things in ways that she can understand. I will try so many different ways and scenarios to get a point across. Sometimes it’s by pictures or videos or physically showing her things. Sadly, I sometimes give up and try again another day because it just doesn’t click in her head or she just doesn’t fully comprehend. It can be so frustrating and difficult, sometimes it’s so upsetting for me because we aren’t that different. We both have hearing loss and I thought that with the same diagnosis and difficulties that teaching her things would be easier.

mom and daughter in the car
Courtesy of D.M. Fimple

For example when talking to my friend Nicole, she will ask ‘where’s your dad?’ When she asks that, what she really means is Nicole’s Husband. She does that with every family she meets. We have tried to explain to her that it’s not Nicole’s dad, it’s her husband, but she still doesn’t quite understand. Sometimes it’s cute though, but if you don’t know her then you won’t know what she’s really asking. She would meet a new friend and instead of asking for their name she would say the tall boy or she would put her hand up showing the height of the person. I used to have to make her show me the person. Sometimes it was the only way to know who she was talking about. I still prompt her to ask people their names. Sometimes she will, sometimes she won’t. I assume it’s because she would have to pronounce it and she doesn’t want to say it wrong, or maybe she’s scared she won’t hear it. Being Hard of Hearing in a dominantly hearing world means we are constantly out of our comfort zone. It’s why I spent most of my time as a young kid reading books instead of interacting with others.

I should probably mention a few things about hearing aids. Most people already know they are expensive. My mom made too much when I was a kid so I couldn’t get medicaid. Oftentimes she struggled paying for them and she had to take out loans or ask my Granny for help, which I know was hard for her because she’s where I get my independence. Insurance companies pay for half of the ear molds, and that’s usually it. There is a range for the cost of Hearing Aids, but it’s between $4,000 and $8,000. Mine were usually $4,500 give or take. Hearing Aids are technically supposed to be replaced every five years. My mom asked the insurance company why they don’t cover hearing aids and they told her they considered them an accessory not a necessity. I hope one day that changes for those who can benefit from them. We shouldn’t have to give up hearing because Aids are so expensive. Parents shouldn’t have to struggle as hard as they do just to afford hearing aids for their kids.

I just want other parents with kids who have hearing loss to know that I know things can get frustrating and hard. Sometimes it will feel like you’re not doing enough or it’s your fault that your child may be behind. Maybe you think you’re not doing things right. Just keep showing up, do your best and it never hurts to ask for help. Research will always be your best friend.”

mom and daughter smiling
Courtesy of D.M. Fimple

This story was submitted to Love What Matters by D. M. Fimple from Midlothian, VA. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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