A Unique Fish

“She is so adorable!” Our neighbor exclaimed as we held open Sonya’s trick-or-treat bag. “What is she? Some sort of robot?”

“She is a fish,” I replied.

“Well I just love the blinking lights,” she said pointing to Sonya’s processors. “A unique fish you are!”

“Yes she is!” I laughed.

Deciding when to explain to people that Sonya is wearing cochlear implants has never been easy for me. Over the summer, in Central Park’s Great Lawn, a young girl sitting nearby on a blanket pointed to us and sneered, “What are those ugly black things on that baby’s head?” Her dad quickly told her to “shut it.” I didn’t respond. Instead, I packed up Sonya’s toys, rolled up our blanket and left. I was too upset. My biggest fear was that Sonya somehow sensed my emotion and thinks that it was because I was ashamed, which is not the case. I just didn’t know what to say.

From that moment on, I knew I needed to come up with some sort of response. I decided to ask other parents in my situation, and here are their suggestions.

As soon as they can understand, teach your child the language they need about themselves and in a loving way. For example, I should plan to use the word “deaf” and “cochlear implants” around Sonya – and explain that they are just a part of who she is. Explain to Sonya that she is different, but that we all have differences.

Teach your child to use these words as a defense against ignorance. Unfortunately, what the girl in Central Park said will not be the last derogatory remark Sonya will hear in her lifetime. But if I do my job and ensure she is as well-adjusted as possible, when someone says to Sonya on the playground “You’re deaf!” she will hopefully respond with something like, “Yes – I sure am. I use my CIs to hear just like you use your glasses to see.” Ultimately, I hope Sonya is able to teach people to open their eyes and to learn.

Speak up, but not in a defensive way. This past weekend, Sonya and I visited a bookstore where I overheard a child ask her mom what Sonya had on her head. “Oh, I am sure that is helping the baby in some way,” her mom responded. I decided that this time, I would say something. I turned around and asked nicely, “Oh, do you have a question about what she is wearing? I know it is different from what you have seen before, right? These help my baby to hear.” I then removed one device and let the child look at it more closely. The little girl was interested – as was her mother. I realize that very few people in the world have CIs – they are not something that people typically encounter.

In some instances, it just makes sense to say nothing. I have noticed that far more often than not, people are too polite to say anything. I never force the conversation. I only bring it up when it emerges organically.

Find humor, when possible. A question asked in a mean tone doesn’t always warrant a serious response. One parent at Sonya’s speech therapy encountered a rude person who one morning on the elevator asked curtly what those things were on her child’s head. Something about the person’s tone and the fact that it was just too early in the morning to dive into a lesson about the amazing benefits of cochlear implant technology led this parent to simply respond with, “Oh those? they are headphones. She just loves to listen to Howard Stern in the morning.” I love this.

I would love to hear other ideas for responses as well. Do let me know if you have any suggestions!

On Music

When Yan and I used to discuss having and raising kids, we knew music education would be a given. Both former musicians (Yan plays piano and I used to play piano and acoustic guitar), music is what brought us together. On our second date, Yan made me lunch and then played me a Chopin Etude.

But we disagreed on how we would pass our love of music on to our children. I would suggest introducing them to all sorts of musical genres. Classical, jazz, pop, whatever. Let the child decide what they enjoyed and how they would incorporate it into their life. Yan on the other hand had a different view. “Chain them to the piano!” he would say in a joking (but not really joking) way.

We even bought a grand piano a few years ago. It takes up a significant amount of real estate in our New York City apartment, and forced us to forego having a TV.

IMG_0115
Sonya “listening” to Yan playing piano as an infant. She also might just be enjoying the vibrations that complemented her already vibrating bouncy chair.

When we learned that our baby had a high risk of hearing loss during pregnancy,  the irony was not lost on us. How could this happen to us of all people?

“Actually, it could be great.” Yan told me. “I will be able to practice at night and she won’t even notice!”

Yet, this also was not the case. Despite the fact that Sonya had hearing loss, she could feel the vibrations of the six foot-long instrument just fine. Yan’s interpretation of the Russian Romantics was enough to wake her (and many others in our building) from any sleep.

So the question of whether Sonya will appreciate music has haunted me. It is something I always ask older kids with implants. Trying to understand how they understand music through the prism of their deafness, I ask them simply whether they like to listen to music, and whether they play any instruments? So far, the response has been mixed. Some kids say they love music (typically pop or hip hop) but they would not want to listen to orchestral music. Others say they read the lyrics, but do not remember melodies. It is not something they participate in unless they have to. Disheartening to say the least.

While I have read that the newest devices (Sonya has the Nucleus 6 device by Cochlear) are much more sophisticated when it comes to hearing music than their predecessors, we will never really know what Sonya hears when she listens. We can try to emulate what it is like to hear electronically – as in a recent NPR story, which offers accounts of people who have cochlear implants and what music sounds like to them, but we will never know for sure. Interestingly, in the comments section of this story, even those with cochlear implants do not agree on what they actually hear. One commentator wrote, “Fascinating, but I’m not sure that I agree. I have cochlear implants in both ears. I could hear the differences in all of the clips, and the ones that are supposed to sound like CIs don’t sound like what I hear.”

For the time being, I will continue to encourage Sonya to experiment with music. She recently received a glockenspiel – which she seems to enjoy, though she also just loves to hit things with mallets, so I can’t be sure she is actually appreciating the sound she is producing. Ultimately, Yan and I may have to accept that our child will not touch the piano that sits in our living room, and that is okay.

Update: Sonya recently has taken interest in watching Yan play piano. I overheard them playing together recently and quickly caught it on camera. I think it is brilliant. She seems to play the right notes at the right times! Yan, however, says pure coincidence. Haha. In any case, we agreed it is adorable:

My Daughter the Cochlear Cyborg….?

Sonya was recently referred to as a “cute little cyborg.” Yan, who considers Star Trek: The Next Generation “a documentary,” absolutely welcomed the moniker. And why not…. I mean, the fact is, she is a cyborg. According to Oxford, because of her cochlear implants, Sonya’s abilities “are extended beyond normal human limitations by mechanical elements built into the body.”

CI T-Shirt
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And I can see why people who wear cochlear implants may embrace the term cyborg to identify themselves. When Sonya was diagnosed with hearing loss, my brother sent me an article written by Michael Chorost, who proudly refers to himself as a “Cochlear Cyborg.” Born with profound hearing loss that grew worse over time, Michael chronicled his relentless pursuit to make himself hear a rendition of the famous musical piece “Bolero” by Ravel, through cochlear implant mappings and upgrades. The last sentence of his article was particularly moving to me: “My hearing is no longer limited by the physical circumstances of my body,” he writes. “While my friends’ ears will inevitably decline with age, mine will only get better.”

But the term cyborg still bothers me. I don’t want Sonya’s identity to be defined by the fact that she wears cochlear implants. It was one of my greatest fears when I learned she was deaf — that she wouldn’t feel part of our society. And it’s why Yan and I chose to pursue auditory/verbal therapy for Sonya, rather than sign language.

While it seemed like an obvious goal for us that we would want Sonya to learn to listen and speak and be part of our society, interestingly, a number of other parents we have met through speech therapy are heading in a different direction for their children. One mom I met, who now has a two-year-old with cochlear implants, refers to her child as “a deaf person who can hear.” After much work (and becoming immersed in ASL herself) her child is now fluent in English, American Sign Language as well as a couple other languages (clearly a very intelligent child!)

I certainly respect and see the wisdom behind such a decision. At night, when Sonya is not wearing her implants, I often wonder how we will communicate with her when she is older – when she has a nightmare or needs something. Sign language would certainly be useful in such a situation.

But I still believe we should focus on English first – as learning sign might interfere with Sonya’s ability to learn oral language (as children who are deaf may rely on sign if it is a tool at their disposal, as it is easier for them).

Ultimately, Sonya will be the one to determine how she chooses to identify herself – be it cyborg or whatever. And I suppose I just have to accept this. Sonya was born deaf. She may in fact in the future decide to learn ASL and join the deaf community. But for the time being, while I have some sway, I will do everything in my power to ensure that she has the opportunities available to her in our society first and foremost.