Suffering from Music Loss

This post follows an earlier post On Music in which I discuss how we are approaching music education for Sonya.

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Sonya points to her ears when she hears Yan practice piano. “Ee!” she says, meaning “I hear it!”

This afternoon as Sonya napped, I did something I hadn’t done in a long while, I listened to music for fun. As Radiohead’s Separator played, I concentrated on the first dense and complicated beat, which in its second half drops into a gorgeous guitar melody. It’s impossible to describe. I want you to listen to it. It suddenly hit me that Sonya may never love it as I do.* It might not be something I can share with her when she is older and it pains me to think that.

Music used to play an enormous role in my life. My dad plays the piano and guitar. To avoid having to clean up after dinner as a kid, I would sit in the rocking chair in our living room and listen to him play. I wanted to be like him so I took up the instrument too, and then, in high school, the guitar. In college, I continued to study classical piano, folk music, pop, alternative rock and (a bit embarrassed as I write this) underground/old school hip hop.

When I want to reminisce about the time I spent in France, I listen to Liszt’s Sonata in B Minor and De La Soul’s Three Feet High and Rising album. Scenes of my early days in New York City are forever coupled with the music of Bob Dylan, Rakim and Horowitz – playing Scriabin. For most of my life, I fell asleep and woke up to music.

This changed once I knew Sonya was deaf. When we incorporate music into our playtimes, we do so purposefully in order to help Sonya understand how to listen. For example, rather than just enjoy a song in the background, we play the song, dance to it, and then stop the music to help Sonya understand to listen for sound. Months ago, (to my naive delight) Sonya would dance to what I believe was music in her head. Now she knows that she must hear music aloud to dance. She will now point at the computer when she wants to hear it.

We also refrain from having music on in the background, as background noise can make it more difficult for people with hearing loss to perceive speech sounds.

I miss music but I also must remember that I don’t have a crystal ball. We don’t know whether Sonya will appreciate it when she is older. We don’t even know what she is hearing. She may hear the overall theme or rhythm, but she might miss the oftentimes subtle moments that make music so pleasurable.

For now, Sonya certainly appears to love it. Whenever Yan has a moment to practice piano, Sonya runs to living room pointing to her ears and shouting “EE!” her sign for “I hear it!”

*I do realize this might be the case regardless of Sonya’s hearing loss. Yan also hates Radiohead 🙂 

 

In Transit

One of the most difficult aspects so far of parenting a child with hearing loss, is figuring out how to get her on schedule, when one’s schedule is different every day. As I write this, Sonya is trying to fall asleep in her crib, but I know I will need to wake her in just 30 minutes so that we can get out the door in time for speech therapy downtown.

Three days a week I shlep Sonya to the Center for Hearing and Communication an hour commute each way. One day a week we have an in-home therapist. In New York City, such a commute is no easy feat. Getting out the door with a baby is always complicated. Add hailing a cab or Uber; maneuvering NYC traffic from the Upper West Side to Financial District within an hour; unloading the car seat; attaching the stroller; wheeling Sonya into Gregory’s Coffee (my vice!) and finally opening the extremely heavy bronze doors of 50 Broadway…it can be a bit much at times.

On good days, Sonya will take the hour ride as an opportunity to nap – leaving her refreshed for her speech therapy session. Other days, she needs to be entertained. I have tried books, toys but of course – I now just give her my iPhone. She watches Baby Einstein, HBO Classical Baby and Netflix story books. She also loves playing Peek-a-Boo Farm, Peek-A-Boo Wild, Peek-A-Boo Trick or Treat and Peek-a-Boo Fridge. I can almost see other parents cringe as they read this, but for us – the videos just help. She is interested and has even learned new words.

And thankfully, New Yorkers have also been extremely helpful. It’s not advertised as a trait amongst this population, but it is true. Someone always helps me. As I struggle to open the door, a passerby inevitably jumps out of his or her way to assist. The other morning, while trying to navigate across Broadway to get into an Uber, a kind man literally stopped traffic to help Sonya and I cross the street.

Of course, it could be worse. We are extremely lucky that the Deaf Infant Program at the Center for Hearing and Communication covers the bulk of our transportation costs, and these costs add up fast. A trip to the CHC and back to our apartment on the UWS can cost between  $60 – $120 per day, depending on traffic – as much as $360 per week! New York State’s Early Intervention Program used to cover transportation, but that is no longer the case as of recently. This means that  parents of children who have hearing loss, but who were not born deaf as was the case with Sonya, are not covered for transport!

It’s something I think about every day on our way to therapy. I think about it when I cancel play dates because Sonya is getting a rare nap at home and not in the car and I don’t want to disturb her. And I think about it again today as I get ready to wake up my sleeping baby in order to make it to CHC on time.

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Bath and Baby Works

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I am embarrassed to admit it, but it wasn’t until a couple months ago that Sonya finally began to wear her waterproof cochlear implants in the bath.

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Sonya’s first bath at one week

Since we are in and out of Ubers and speech therapy sessions almost every day, taking a nightly bath has always felt like a necessity, and a frustrating one at that. Sonya kicks and screams her way in and out of the water. On our part, the goal has always been to complete the task quickly as possible.

When I told our speech therapist that Sonya had not yet been exposed to sound in the bath, her eyes widened. “How could you not let her wear her devices?! Bath time is a critical opportunity for her to explore sound!”

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Cochlear Nucleus 6 water proof sleeves

It was the prompt I needed to get our act together. I dug through the contents of Sonya’s cochlear implant suitcases to find the water proof kit.  We placed her processors inside the water proof sleeves (a bit tricky to do actually…) inserted the coils and magnets.  We placed them on Sonya’s ears. Since the waterproof sleeves are quite large, we had to use the full-sized batteries (not the compact batteries, which fit Sonya’s small head). Sonya is back to her headbands in order to hold the very large devices in place.

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The first time she heard water, Sonya just stared blankly. Perhaps she was  stunned as she realized that water made noise. I playfully splashed her, causing her to scream in surprise.

Since then, Sonya has grown slightly more accustomed to bath time, though she still doesn’t love it. I even feel like I have to be careful about how loudly I speak in the bath, as the echo can be too much for her. I have noticed that she hates it when I dip her head in the bath water with the implants on. Perhaps it is the sound of the water that is overwhelming. Sonya does love bubbles, so I try to make sure there are plenty of bubbles in her bath water to keep her calm and interested. We do struggle with other ways of keeping her calm however.

Thankfully, friends of mine have been eager to help. My lovely friend Jane bought Sonya Tomy Do Rae Mi Dolphins. Each dolphin plays a different note when you tap them on their heads. Sonya loves them.

While I realize I need to expose Sonya to additional toys to encourage her to hear new sounds, I hesitate. Bath toys in general gross me out (these water flutes look kinda interesting, but also kinda yucky…). When Sonya was younger, we had her play with a rubber duck in the bath. The type that squirted water. A few weeks later, I realized how disgusting this toy was. Impossible to clean and never totally dry. I shudder thinking about the one time I squeezed it and brown water came out….

But I will attempt to stay open minded and to try other (sanitary!) toys that may be recommended….. Anyone? 🙂

In the meantime, hoping to make the most of bath time!

 

 

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