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!

Preoccupations and Coincidences

Hours after our OB informed me that our unborn child had a 25 percent chance of deafness, Yan and I attended a piano concert at the Armory. The pianist, in a brief introduction before playing, explained why he had chosen to focus his concert exclusively on Beethoven’s works. Maybe it is the musician in me, but I knew this was a sign. Surely – the fact that we were listening to a concert of Beethoven’s works just hours after our genetic results had been communicated indicated that our child would be deaf.

Thinking back on it – I realize it was a preoccupation – but the coincidences didn’t seem to stop there. When I was 20 weeks pregnant, Yan and I decided to take a baby moon. I didn’t want to travel far, so we decided to take a road trip to the Berkshires. Knowing nothing but its Trip Advisor reviews, I made a reservation at the Birchwood Inn in Lenox, Massachusetts.

When we arrived, we were greeted by the inn keeper, a petite woman with short grey hair and glasses named Ellen Chenaux. Ellen helped with our luggage and gave us a tour of our room. She had gone all out for our baby moon, and provided us with a small basket of cookies, certificates for free ice cream at the town ice cream parlor, a stuffed dog (which Sonya now loves) and even a jar of pickles. It was too adorable. As she turned toward the door, I noticed she was wearing a cochlear implant.

The next morning as we entered the dining room, a white faced golden retriever brushed against the side of my leg, asking for a pet. The sweet animal sat at my feet near the fireplace as we enjoyed our breakfast, and I discreetly threw her a few scraps. Ellen must have noticed that we had connected with her dog, as she approached our table and explained that Quinn – like her – was also going deaf in her late age. Apparently, Quinn came to Ellen years earlier through a program called NEADS — Dogs for Deaf and Disabled Americans — after Ellen had developed late-onset-adult deafness. According to the Birchwood Inn’s website:

quinn_top

Quinn — aka Molly Quinn McMuffin — is Ellen’s 14-year-old Golden Retriever and former Hearing Ear Dog…Quinn and Ellen — a late-deafened adult with miraculous cochlear implants — were a team for 12 years thanks to NEADS, the Princeton, MA-based association. Quinn, who is now retired, went from being an inmate, and alerted Ellen to sounds Ellen cannot hear by tapping Ellen’s leg with her paw.

Yan laughed as soon as Ellen returned to the kitchen. “Um…looks like all signs are pointing to deafness,” he joked. I tried to laugh it off – but couldn’t help but feel disturbed by the fact that out of every B&B, we chose the only one who had a deaf inn-keeper and dog.