Aaron has only been hearing for a year. He’s three. He was born completely deaf in both ears. After a near-death experience at birth, my husband and I knew we were very blessed to have this little boy, and were thankful his lack of hearing was the only side effect from his emergency delivery. We found, however, that much of the hearing world saw Aaron differently than we did. When we told strangers who tried to talk to him that he was deaf, most everyone had the same reaction: “Aww, I’m so sorry!” Sorry? Sorry for what? There is nothing wrong with Aaron. He is just a little different and perhaps will view the world from another perspective. We absolutely did not want our son growing up thinking he was broken, should be pitied, or needed to be “cured.” Our decision to give him a cochlear implant was therefore meant not to “fix” something that was wrong with Aaron, but to give him advantages and opportunities that aren’t as easily available to deaf people, and to avoid some of the struggles he might otherwise encounter. While we knew it would be a controversial decision, we wanted him to learn to speak and be part of the hearing world like the rest of his family.
At twenty-two months old, Aaron received his implant. This was the most difficult decision my husband and I ever faced. Aaron wasn’t correctly diagnosed as profoundly deaf until he was fifteen months old. Immediately after, I began reading and researching. I read everything regarding deafness I could get my eyes on: facts, debates, opinions, websites, books, and blogs. I scoured the internet for resources, weeding out the legitimate information from the incredible amount of misinformation on every topic I could think of: how would Aaron learn to read? What would be the best way to educate him? Should he go to a deaf school, or be mainstreamed? What was the difference between ASL and SEE? Would he be a candidate for a cochlear implant? What were the risks of the surgery? What if the implant didn’t work for him? Would he appreciate music? Was it wrong to implant a child who can’t speak for himself?
These are just a sampling of questions to which I went in search of answers. I emailed deaf adults. I contacted hearing parents of deaf children. I met an amazing person who was just getting an implant himself at age twenty-five. Ultimately, my husband and I decided that, while we completely respect Deaf culture and its language, Aaron lives in a hearing family and we wanted him to be part of that world. We also knew that language acquisition, any language, spoken or visual, is best accomplished in the first five years of life. We therefore decided that if we were going to implant him, it should be done while he was young and could still acquire spoken language easily and naturally.
Living near a city with a large deaf population, I realized we would face opposition, people who thought we were making the wrong decision for our child. But I met deaf adults who were thrilled to have their own deaf children. To have someone like them. To have someone who would fit in with and learn their culture and language. I wanted the same for my son. Despite all the conflicts between the Deaf and hearing communities, we’re really not all that different in goal, mainly in means; we want what we think is best for our children, and we want them to be a part of our worlds. I wanted Aaron to have a cochlear implant, but that does not at all mean that I think all Deaf people should have them, nor even all deaf children of hearing parents. It is a decision that needs to be made carefully, considering cultural, social, and medical factors, including the type of hearing loss and potential success or failure of an implant.
Aaron started receiving speech therapy using cued speech immediately after his late diagnosis, after several subjective tests misdiagnosed him. We also started learning ASL, which is still his primary means of communication today. I realized that having an implant may make him feel trapped between worlds, still deaf, and yet able to hear. Instead, though it may seem too idealistic, I hope that one day, Aaron can help bridge the gap between hearing and Deaf communities. I hope he continues to progress with both his speech and sign, so that he might be able to be multilingual and multicultural as well.
Today, about a year after his CI activation, we still feel comfortable that we made the right decision for our child. Two years ago, however, we were far from certain. There are some risks, as there are with any surgery. Was I a bad mother if I accepted these risks for my son, for an elective surgery, when there was nothing actually wrong with him? Ultimately, after discussing the surgery with Aaron’s audiologist and ENT, we decided the risks were low in Aaron’s circumstance since he received the meningitis vaccine, and in our opinion, the possible benefits from the implant outweighed the low percentage of risks. Still, I spent countless hours researching possible outcomes, reading medical journals and websites, talking to people who have received implants, as well as those who opted not to. I talked to other mothers who had been faced with the same questions and doubt, and perhaps that shared experience was the most comforting reassurance of all.
As much as we wanted Aaron to hear, it was not an easy decision to give him a cochlear implant. Despite misperceptions of some Deaf people, not all hearing parents automatically jump on the CI bandwagon as soon as they find out their child is deaf. We have a school for the deaf within an hour drive of us. We strongly considered it. Maybe if we were more impressed with this particular school, we would have tried it. I liked the idea of my son being surrounded by other kids like him. Part of me even hoped that he might someday have a deaf sibling so he did not feel alone. However, after investigating this particular school, we decided it was not for us. We had learned that, at the time, the school had a fairly high teacher turnover rate, and that some of them, mostly hearing, were not fluent in ASL. It also seemed to focus more on teaching “practical skills” so that deaf children could interact with hearing society when needed, especially as adults. While language skills are crucial, if we chose a deaf school, we wanted it to be one that focuses on a typical curriculum of math, history, language, science, and arts, but taught in ASL. While it did touch on those traditional topics, it seemed to have more of the focus of a “trade school,” preparing them to be functional deaf adults. Children at the elementary level were grouped not by grade level, but by language ability, so that the emphasis was not on general knowledge acquisition, but language development. And that just wasn’t the type of education I wanted for my son. I wanted him to grow up knowing he could be whatever he wanted to be, deaf or hearing, because he had a solid education and language skills. I realize that not all Deaf schools take this approach, but the one that we had access to did not provide us with the type of experience we were looking for.
My husband and I decided we would mainstream our son, likely in a public school with a cued speech transliterator. But even once we had decided to have him implanted, there were more questions: would we start with just one, or go bilateral? Should we get an Advanced Bionics or a Cochlear brand? Even a simple option like what color processor to choose became a heavily weighed topic; after all, he would be wearing this thing around his ear for a few decades. Should it be brown to match his hair? White to look i-Trendy? Black to look sleek? It is hard to make these choices when the recipient is someone else, someone who couldn’t speak for himself. Yet.
Aaron was implanted in December 2010 and activated in January 2011. Little by little, day by day, we started to increase the volume and sensitivity on the very advanced piece of electronics that hangs from my son’s tiny ear, so that in April a year ago, he responded for the very first time to an environmental sound. It was a simple tone, a loud buzz from a plastic noisemaker. But it yielded an incredible response from my two-year-old, a response that made him stop still in his tracks and start investigating for the source of the new auditory experience. And then he said, “More!” He signed it over and over, thoroughly enjoying this sound. Sound! My profoundly deaf child was responding to sound, and liking it! When he wakes up in the morning, the first thing he does is point to his ear to ask for his processor. We don’t have to fight him to wear it; in fact, sometimes we have to fight him to take it off at night.
A year later, Aaron has an ASL vocabulary of a few hundred words, which continues to grow along with his verbal understanding and spoken vocabulary, which so far consists of ‘ma-ma’ and a few animal sounds, right on par for a baby who has been hearing for the same amount of time as Aaron. His latest audiogram indicates just a mild hearing loss, far closer to normal hearing than we ever expected for him. We still use cued speech to provide visual access to the English language, and hope that he will become fluent in both ASL and spoken English.
Had the implant not been successful, which was a possibility I considered, we most likely still would have mainstreamed Aaron, enrolling him in public school with an interpreter or transliterator. But while we want him to be a part of the hearing world, we don’t want him to forget his deafness. That is why we actively seek out interaction with other deaf children and Deaf families, so that he can meet other people “like him.” There are so many options available today for the best possible education of deaf children, and while there may be no single answer that is the right path for every deaf child, be his parents hearing or deaf, the cochlear implant and becoming verbal was the right option for Aaron. And someday soon, he can tell you so himself.
