August 2015 – Hearing Sonya Rose

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.

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 — Available via Amazon here: http://www.amazon.com/CafePress-Cochlear-Implant-T-Shirt-Toddler/dp/B00MNNL4PM/ref=sr_1_5?ie=UTF8&qid=1439920025&sr=8-5&keywords=cochlear+implant+t-shirt

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.

Strengthening the Weakest Link

New York City offers excellent care for children with hearing loss. Unlike many families, we were notified of the possibility of hearing loss well before Sonya was even born, and since that time have been able to proactively deal with it. We are surrounded by the finest surgeons, audiologists and speech therapists. Yet, this will not guarantee that Sonya will be successful in acquiring language. While a percentage of Sonya’s success will be based on the care she receives at the Center for Hearing and Communication and the Cochlear Implant Center, the most important factor determining how Sonya fares will be dependent on the work we do at home.

It’s a frustrating position to be in, as I am the least educated/skilled person in this arena, and yet, the greatest weight is placed on me — especially since Yan works and I am at home. And recently, despite the hours I have already put into helping Sonya develop speech at home, I have felt like I may be the weakest link when it comes to her ability to acquire language.

While Sonya has made leaps in terms of showing us that she hears all types of sounds, she is producing many of the same sounds she did prior to our trip to Italy. Still, I feel thankful and proud that she has come as far as she has. In the video below, Sonya responds to us whispering her name!

So for the time being, I am working to educate myself on ways to help Sonya acquire speech. The following list are things we are doing already on a regular basis. Also below is a list of books I am currently reading – which I thought might interest other parents in our situation. Look out for my upcoming post on how we are applying the suggestions in these books as well.

Ways to Promote Speech

1. Give opportunities for Sonya to ask for what she wants. If a favorite toy is out of reach, wait for her to vocalize that she wants that toy before reaching for it and handing it to her.

2. Imitate the sounds and facial expressions she makes.

3. Encourage her to use different vowels and speech sounds by linking sounds to toys and being consistent. For example, when we play with an airplane, we make the sound “aaaa” and when we play with a car, we make the sound “beep beep.” Eventually, Sonya will (hopefully) associate these toys with that sound.

4. Encourage Sonya to stop and listen to environmental sounds. When the phone rings, doorbell chimes or tea kettle whistles, we stop what we are doing and point to our ears. Encouraging Sonya to stop and listen to the sound – and then identify what the sound is we are hearing.

5. Narrate what is happening. Use simple language to describe the events as they are happening throughout the day. This is especially tough for me. Naturally I am an introvert – but I am forcing myself to become a chatty person.

6. Sing. We sing all day long. I try to add gestures to songs to keep it interesting/entertaining.

7. Read Baby Books. I have been told to choose books that have large pictures and are not too detailed. Brown Bear Brown Bear What Do You See – is a favorite right now. I ask lots of questions on each page, such as “what is this?” “where are his eyes?” “Where is his nose.” Sonya loves to read and typically wants to do so at least a few times a day. She doesn’t always make it through a book, however – and I don’t force it.

Books I am Reading: