People with any degree of hearing impairment and the parents of these people tend to fall into two groups.
And let me preface this by saying this is purely *my personal opinion* after 4.5 years of observation and first-hand experience raising a Deaf son. I’m not speaking for anyone else here.
Group 1 will tell others that they have hearing loss. They will rely on their hearing aids to amplify sound, read lips, and readily look for solutions to “fix” and restore their hearing, such as the decision to get cochlear implants. They will place a heavy emphasis on attending speech therapy and have goals like being in a “normal” classroom at a “regular” school. Parents of these children will tout in online groups how their child doesn’t even “sound deaf”. These individuals may consider themselves disabled yet they work very hard to assimilate to our hearing world, often seeking a lot of medical intervention to do so. They don’t want their hearing loss to make them different or derail the lived experience that everyone else seems to be having.
The feelings of people who fall into Group 1 are extremely valid, as are their decisions, but the parenthesis I used are to indicate that these types of statements can be offensive to Group 2.
Group 2 will accept themselves as they are — which may take time, especially for those born to hearing parents. They will proudly identify as capital ‘D’ Deaf, most likely use American Sign Language (ASL) – whether in addition to hearing aids or not – and will be part of a warm community of people who also communicate via visual language. Instead of being regarded as a person who lacks hearing, these individuals see their deafness as a gain and not a loss. They shift their perception to recognize the unique ways that the Deaf community contributes to the world, and they embrace Deaf culture with open arms.
A pair of Deaf authors wrote in Psychology Today, “Based on [society’s] standard of normalcy, hearing loss is a bad thing.” Why does it have to be so? Maybe if the rest of us could shift our thinking, we would see what they see: it’s not bad at all. The authors continued to say:
You can even read the book titled Deaf Gain. It’s good, right? It all makes sense. But what if you fall somewhere in the middle?
Dorian was born profoundly Deaf in his left ear. We knew right away we would double down on learning ASL. There was no way we were putting our infant son through surgery though and, let’s face it, he was perfect. He didn’t need fixed. Cochlear implants were entirely off the table. I remember how mad I felt every time someone suggested it. It’s the path of least resistance for others. Make. Him. Hear. But why was no one considering HIS best interests? I was quick to correct them.
We started Early Intervention right away though, because we knew something was amiss with his health aside from being ‘hard of hearing’ or ‘single sided Deaf’ on paper. And when he was six months old, he got a regular hearing aid. No, it didn’t amplify anything. It was, at the very least, a signal to other people that he didn’t hear well.
I used to carry him everywhere (just like I did Hagan), except this time I would sign. I would sign everything I did. I would sign cleaning up toys, sweeping the floor, washing dishes, feeding the cat… Sign sign sign. We were excited to enroll him in the Indiana School for the Deaf (ISD) the minute he was eligible at 18 months of age. That’s right around the same time we got a BAHA, too. It takes all the sound from your profoundly Deaf ear and sends it to your other ear. It’s good for noisy situations, because single sided Deaf individuals can’t locate sounds. And he was always running away from me in the children’s museum or at the park or at the store. Basically everywhere.
We did all the therapy. All the weekly ASL lessons with our fabulous Deaf mentor. The preschool at ISD. The monthly Deaf playgroups at Holliday Park. The Signing Time videos. The signing storytimes at Barnes & Noble.
He loved his school and his Deaf friends. His teacher was an actual angel, too. But he didn’t sign back as much as the other kids. You could have a full conversation with him in ASL and 50% of the time he would talk back. He knew what I was signing, and I knew what he was saying. Which world were we supposed to live in? Were we failing somehow? Or was it just because he knew he could rely on the hearing he had also? He was fiercely himself and you had to know him to understand him. Nevertheless, we persisted.
When raising a Deaf child, you have to look beyond the moment and way into the future. What’s right usually isn’t what’s easy. I knew that ASL was his lifeblood to full communication and equal access. I knew there was an 80% chance that his hearing loss may become progressive at any time without warning. I knew that the Deaf community is the only group of people who truly understand what he goes through. I knew that wearing a hearing aid was pointless as far as helping him, yet it signified to others that he isn’t ignoring you – he just can’t hear you. I knew that while requesting an interpreter for a baby resulted in a lot of eye rolls from medical staff, because it seemed “silly”, it was forming good habits for the rest of his life. It’s his legal right, after all.
And I knew that when he lost the rest of his hearing very suddenly over the holidays, at the age of 4, it felt like a true LOSS. He cried, a lot. He threw himself on the ground several times a day, every day, in fits of anger and sadness. He stopped engaging in play with his brother. He couldn’t communicate with his teacher down South. (It’s extremely unfortunate the complete and total lack of support for kids like Dorian but that’s another post for another day.) He stopped dancing to the music turned up loud in the car on a sunny day. And he didn’t bother with the sound bar anymore when he wanted to watch a movie on the projector. At bedtime, I would sign his storybooks because he could no longer hear them, but he would roll over and take his hearing aid off and close his eyes. Boy did he start signing after a few weeks, out of necessity, but our hearts were utterly broken for him.
I tried to revive our adventures as a family in the midst of this crazy time period. His hearing loss + our relocation has been a real doozy. We went canoeing, dolphin watching, snorkeling, horseback riding, and a bunch of other things. But it wasn’t the same. His demeanor was different and every outing was way more stressful than it had ever been. He would get turned around and I found myself screaming crying for him too many times to count. As if he would hear me. Yes, even running in front of a car so it would hit me and not him. (Please stop speeding in parking lots.)
Like our Deaf mentor told us, it’s easier to BE Deaf than to GO completely Deaf. She never knew the difference, but he did. And she said life is hard enough for him living somewhere with no Deaf school or community. I needed to hear that. He loved ASL and that side of him, but he missed his damn hearing, too. He knew what a speeding car or a barking dog sounded like, even if he never knew what direction it was coming from. And he knew the chorus to Daft Punks’ One More Time and the Jackson Five’s ABC. He went from hearing 50% to hearing 10% virtually overnight.
So with the support of our Deaf friends and mentors and other awesome parents who also raise their Deaf kids bilingual, we made the decision we never ever thought we would make. We got a cochlear implant.
Just one, so he can be the way he was before and not be overwhelmed by sound. Maybe enough to help keep him safe. And if he hates it, we aren’t too far in, ya know. We always thought he could make this decision FOR himself and it would be easy. Body autonomy – I’m really big on it. Cochlear implants still tend to be somewhat taboo and controversial in the Deaf community, too. I understand the reasoning, but of course this progression in loss just had to happen before he was really old enough to make such a big decision. At least he can tell us his feelings, whether something is too loud or not right with the programming, and whether or not he wants to wear it and when.
From where I sit, I don’t know what it’s like inside his head. I wish I could crawl in there for a day. But we have to make the best decisions we can with the information we are given at the time. We knew our voices had become a mere whisper to him, and he was really sad about it. So if we could improve his life, didn’t we owe it to him to try?
To be clear, getting a cochlear implant is not a “cure”. Nothing can restore or replace your natural hearing in a *true* manner. Things will sound remarkably different. But it’s the best piece of technology currently available and has gotten the closest to replicating sound for decades. I don’t care if he “sounds Deaf” (which I personally find offensive) or whether he grows up to have a preference of communicating with ASL or spoken language. Or both, depending on the setting, like we have been all this time.
Heck, that’s why we learned ASL. We will fit into his world instead of making him fit into ours. Yesterday we decided to just give him one more tool in his toolbox with a cochlear implant.
He’s Deaf. We are proud of that. But he experienced a massive loss with his hearing, too. It was something we all had to grieve. We are living somewhere right in the middle of Hearing Loss vs Deaf Gain.
You do you, little Dorian Louie. And we are here for you either way.
For now, we are just ready to go home. Wherever that ends up being. ❤️