Speech Therapy – Then and Now

In my latest post I discuss the importance of speech therapy BEFORE Sonya could hear with CIs

When Sonya was just four months old, she began speech therapy at the Center for Hearing and Communication in New York City. At that time, Sonya was wearing hearing aids, but did not yet have cochlear implants (she wasn’t implanted until she was seven months old). While the hearing aids certainly stimulated Sonya’s auditory nerves, her hearing loss was so profound that they didn’t do much for her. Regardless, we continued to make that hour long schlep each way downtown so that she could receive speech therapy.

You might ask – what’s the point of speech therapy before a child can actually hear? Believe me, I asked myself (and our therapists) this same question. While the idea of a speech therapy session might seem ridiculous at such a young age, I learned and now can attest to the fact that the time spent at the CHC before Sonya could hear was critical. It accomplished the following (and I am sure more):

  • Helped lessen the trauma of the upcoming transition to sound. It acquainted Sonya to the therapists, toys and games that she would one day hear – thus easing a transition that otherwise could be quite traumatic. Sonya bonded with her therapists at an early age. We played with balls that chimed, airplanes that would one day be associated with the “ling” sound “aahh,” and toys that moved and played music. These were toys that were visually stimulating, and would interest her even further (without scaring her) the day her cochlear implants were activated.
  • Helped to increase Sonya’s attention span. Early speech therapy sessions also helped to prepare Sonya for the future “work” she would have to do. Focusing on a single activity for an extended period of time helped her increase her attention span, which would be critical for future speech therapy lessons.
  • Served as therapy for me too. At times, Sonya’s speech therapy sessions were really my therapy sessions. An opportunity to discuss my own fears and concerns as I processed Sonya’s hearing loss. Confiding to Sonya’s therapists, I sought advice from sleep training a child with hearing loss to how to inform relatives and friends that Sonya was born deaf.

It wasn’t an easy time to say the least. I talk a bit about what it was like to travel six hours a week with an infant in Manhattan here. It was taxing on Sonya too. She didn’t get on schedule as easily as other babies. We didn’t have as many playdates (if any those early months), which was hard on me as a new mom. But I am so grateful we did it.

Today, at two and five months, Sonya is thriving in speech and school. The below video was taken a month ago. Sonya will continue to do speech therapy throughout her school years. It’s still not easy, but seeing our efforts pay off is a huge motivation to keep it up.

The Sweetest Dance

If you follow this blog, you are likely aware that when I learned my daughter Sonya had profound hearing loss and would need cochlear implants, the belief that she would not hear music as we do was one of the most distressing aspects of the diagnosis.

Now that Sonya is two years and five months (and has had cochlear implants since she was seven months old), I still don’t know what she hears when we play music. I do know one thing, however: she loves to dance!

Not only does she love to dance, I see her interpret music in her dance. She seems to hear the dynamics and the tempo. She is also an amazing mimic as she attempts to plie and arabesque. I don’t know exactly where she learned these moves. I am not exactly a great dancer.

I can’t get enough of the joy that radiates from her as she dances. I hope that other parents who have children with cochlear implants find some comfort in it too. We know so little about how the brain interprets sound electronically versus acoustically – especially for children implanted so young. Sonya’s love of music and dance shows us that at least for her, cochlear implants are not yet adversely impacting an appreciation for music.

If you are interested, check out my earlier posts on Sonya and music:

On Music

Suffering from Music Loss

Здравствуйте Sonya!

When Sonya was two weeks old, we hired Nina. We feel extremely lucky to have found her. Nina hails from Ukraine, but has lived in the US for more than fifteen years. She recently became a US citizen! She speaks English, Russian and Ukrainian. In her past life, she was a veterinarian. Nina is a loving nanny and Sonya absolutely adores her (as do we).

Nina speaks to Sonya exclusively in Russian. Sonya understands Russian well, but is just now starting to speak it.

Historically, speech therapists recommended against teaching children with hearing loss more than one language. The fear was that learning a second language could interfere with the mastery of the majority language and further delay speech. Our speech therapists, however, disagree with this concern. They believe that as long as we are consistent in our approach with Sonya, regardless of language, she should be able to learn Russian alongside English.

Nina regularly comes to Sonya’s speech therapy sessions. In the early days, I didn’t bring her, but realized quickly how important it was for Nina to understand the strategies we were using so that she could implement them at home, and that we are consistent in how we speak with Sonya, regardless of language.

When Nina and Sonya play, Nina narrates everything they do. It is something I try to do, but struggle with, as I am naturally an introvert. Nina repeats the same word over and over, “na, na, na!” (take, take, take!”) or “die, die, die!” (give, give, give). “Maladietz” (good girl). Nina also brings Sonya amazing gifts like a Russian cow that sings “ochie chornia” a traditional Russian song.

We also encourage our Russian-speaking relatives to communicate with Sonya in Russian. When Sonya is with a Russian speaker, she is encouraged not to respond in English. For example, when Nina asks her a question in Russian and Sonya responds with a “yep!” Nina says (in Russian of course) “Do not say ‘yep’ say ‘da’.” Sonya now responds to Russian with Russian.

sonya-and-nina-2

sonya-and-nina

I realize it is pretty extraordinary that someone like Sonya, born with profound hearing loss, might someday (hopefully) be bilingual. But, there is also a chance it won’t happen. As Sonya gets older, we will continue to review how Russian is influencing her ability to acquire English. Given that she has been receiving oral/auditory therapy since she was just a couple months old, we hope she will be able to take on the differences in pitch, sound contrasts and intonation necessary to acquire a second language. That said, one never knows. Some people are just better at learning languages than others, and we will have to adjust our expectations accordingly.

In other news:

Every three months, Sonya has a mapping. A mapping is the process by which Sonya’s audiologist determines the amount of electrical stimulation each electrode delivers to the auditory nerve. Here is a link to her first mapping – when the cochlear implants were first activated. Her latest mapping took place last week at NYU’s Cochlear Implant Center . We noticed later that day, however, that she was having difficulty replicating certain sounds – specifically the “mmm” sound and the “ooo” sound.  I took the below video last night of her trying to repeat these sounds. We will be going in for another mapping tomorrow, to readjust the electrodes so that she properly hears these sounds. Never a dull moment!

Silent Steps

The B sound continues to be difficult for Sonya. She confuses B and D, saying “dye dye” rather than “bye bye.” In fact, she uses the D sound to say most words. Pointing to my shirt she looks up at me and asks, “da?”

“That’s a button.”

“duttah Sonya says.

According to our speech therapist, such confusion is common among children with hearing loss as both D and B are high frequency sounds, and can be difficult to discriminate initially.

While Da reigns supreme, Sonya definitely knows how to use the B sound. She said banana one time at lunch. She said buh buh for bubbles on numerous occasions. She refers to Yan’s mom as Baba, and turns toward our computer screen to look for her, as we typically FaceTime once a week with her.

While it is clear that Sonya’s understanding of words continues to grow, I have noticed that she seems quieter lately. At therapy this week, she made few sounds. She would point at the toys she wished to play with, rather than vocalize her want. She would grunt or whine when she didn’t get her way. It is discouraging to see this after several weeks of clear growth.

While she makes fewer sounds, she moves with greater ease and loves to dance!

In fact, Sonya’s physical development may be the underlying factor. Sonya is now actively cruising. It started a couple weeks ago during an in-home therapy session. We were sitting on the floor of the nursery as usual, when our speech therapist asked if Sonya had started walking around our apartment by holding on to furniture yet. While Sonya had pulled herself to stand weeks ago, she hesitated to move further. While every baby moves at their own speed, Sonya may also have been reading into my own fears about her moving around our apartment. I flinch every time she loses her balance. I grab her just before she falls (although she still manages to sport some bruises on her forehead from crawling too quickly on slick wooden floors). Our speech therapist showed us ways to help Sonya learn to cruise in a safe environment, between the couch and coffee tables in her nursery. Now Sonya crawls up to that area and pulls herself up, then steps from couch to table. Her face beams with pride.

As her brain focuses on perfecting this new milestone, it is not that surprising that her speech development will be placed on the back burner momentarily.

In the meantime, I will try to enjoy this moment of quiet focus.

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.

Accepting a New Normal

While I realize it is petty, one of the most upsetting aspects of Sonya’s hearing loss was the fact that she would need to wear hearing aids, and eventually cochlear implants.

I love the way Sonya looks and couldn’t process the fact that she would need external devices in order to hear. Above all, I feared how she would be perceived by others. The implants and hearing aids are visible and will cause people to question whether she is “a normal child.” I am ashamed to admit that it took several audiological visits to convince me that her ability to hear far outweighed such aesthetic differences.

When Sonya was one month old, she received a pair of loaner hearing aids from NYU. Aside from the fact that they blinked red lights to indicate they were on, they were actually very cute. IMG_2387IMG_2384

I realized then that my underlying fear – that these aids would somehow define my daughter – was unrealized. Sonya’s personality continued to shine, and the hearing aids did not take away from that. In fact, people didn’t even notice them – or if they did – they were drawn to her inner and outer beauty and the aids were only a side fact.