Sonya Curses (But Clearly!)

After a long day of speech therapy, the playground, and an annual checkup at Sonya’s pediatrician, Sonya threw off her CIs. They landed in the middle of a very busy West End Avenue. “Dammit!” I shouted as I strapped Sonya into her stroller, locked the brakes and proceeded to run into the street before a car nearly ran over her thirty thousand dollar equipment.

As I returned to the sidewalk, a nanny watching nearby with her own stroller, shook her head at me. At first I thought it was a sympathetic shake as in, “I can’t believe that just happened to you! Toddlers!” shake. But when we crossed paths as we walked back uptown, she shook her head again at me. Yep. It was a judgment shake. I had “exposed” my daughter and her own to blasphemous language.

Little does she know…

At home, it is often the case that…well… my speech is not exactly angelic. I find myself on swearing rampages when Sonya takes her CIs off. The frustration of dealing with a toddler, coupled with the frustration of ensuring that she wear her cochlear implants at all waking hours gets to me. I used to feel relieved that she couldn’t hear when the headband was off. That was, until I took the below video. Sonya is in her bed. She doesn’t want to nap and is crying. And then 15 seconds in…she says….

Apparently, her lip reading skills are not terrible.

A part of me feels very ashamed by this. Obviously, I have failed Sonya for her to use that word. I am sure many people will agree.

And yet, a part of me feels incredibly proud. The “f” and “k” sounds are not easy to produce. She is obviously hearing them well with her cochlear implants, and is producing them, which is actually incredible¬†given that she was born deaf. Her speech has come a long way.

I wonder how many other parents out there can relate to this? When the CIs come off, do you find yourself blowing off steam by way of swearing? Is this really truly horrible? Or, is it actually good for you? A recent study points out that swearing is a “creative, emotional release that can make you feel stronger.” As a mom to a toddler who also is deaf, we have a lot on our plate and i.m.h.o swearing isn’t the worse way to release it.

That said, I do hope that I can teach Sonya alternate ways of expressing herself…this is not that flattering, really.

 

 

 

 

Sonya’s Third Year Evaluation

In a month, we will celebrate Sonya’s third birthday! While I can’t believe three years have passed already, I also can’t believe we have only had Sonya for three years in our lives. She has had such a profound impact on who I am.

As Sonya approaches her big day, we are also working on transferring our speech therapy services from Early Intervention (which is state-sponsored) to our local school district. To do so involves a somewhat lengthy process, including:

  1. A referral from Sonya’s EI service coordinator, informing the school district that Sonya was born deaf, has been receiving speech therapy through EI and that she should be considered by the school district for special education services (i.e. speech therapy and in-classroom support);
  2. A psych/ed evaluation, which assesses the child’s physical, mental, behavioral and emotional factors;
  3. A speech and comprehension evaluation, which assesses the child’s current abilities; and
  4. Letters from Sonya’s audiologist and surgeon detailing her hearing loss and the tools she will need to succeed in school (i.e. FM system and receivers).

In the below clip, you can watch excerpts from Sonya’s speech and comprehension evaluation. The entire evaluation was nearly two hours, but this gives you an idea. Also, I was observing behind a one sided mirror – so the quality is a bit grainy.

Once the evaluation is complete, we met with a school administrator who discussed Sonya’s progress and whether she would be granting us the accommodations we requested. Since Sonya will be in preschool five mornings a week this year, we requested a hearing education specialist to be in the classroom with her three times a week; for the school to order an FM system (and receivers that fit on Sonya’s processors) that we can use; reading help once a week; group therapy and individual therapy.

The school board meeting was one I dreaded for a long time. I had heard horror stories from other parents, who said they would resort to tears and refuse to leave the room until the administrator granted an accommodation. I heard of another parent who brings a big black binder with her child’s adorable photo on the cover. Looking extremely organized, she runs the meeting! (It’s actually a phenomenal idea). Thankfully our meeting went very smoothly. That said, we will continue to have them annually until Sonya is out of high school. Chances are, we will face such challenges in our future.

In other news, Sonya has grown so much this summer. I have noticed that when Sonya has a developmental leap, she tends to remove her CIs more frequently. Yesterday, she refused to wear them at speech therapy. It took 30 minutes of prodding before she finally agreed to wear them (the game of hot potato finally coaxed her); and this morning, she threw them off just as we entered NYU’s Cochlear Implant Center for her three month mapping. It’s frustrating to say the least. Sonya speaks loudly without her CIs and tends to hurt herself too. Yesterday she was being crazy and hit her head on the corner of a bench and now sports a small red dot right below her hairline ūüė¶

Something tells me that we are only starting to appreciate the true challenges that await us as parents of a ‘threenager’ ūüôā

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Yep. She’s a threenager.

 

Camping with Cochlear Implants

Sonya is attending CampedUp, a unique camp where kids with hearing loss can socialize, gain self advocacy skills and have an awesome time!

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Sonya (bottom right) is with her buddies and counselor Brandi Prell at CampedUp,  a summer camp located in Manhattan for Cochlear Implant and Hearing Aid users.

“Thanks, but we don’t do playdates with other deaf kids.”

These very painful words believe it or not came from a mother who, like me, was raising a baby with profound hearing loss. She explained that she didn’t want her child to be held back by other children who couldn’t hear.

Thankfully, we also had Ketty Baalla in our lives. Ketty has been Sonya’s Early Intervention Service Coordinator for almost three years. More than that, she has been a friend who has personal experience raising a child with hearing loss. This past fall, I asked her about summer activities she would recommend for Sonya. Her response?: CampedUp, a day camp for children with hearing loss.

“But shouldn’t we focus on programs with hearing children?” I asked. My fear that this mom was right had made its way in.

Ketty and I spoke on the topic for an hour. Her experience with CampedUp was not limited to her work as a service coordinator for kids with hearing loss. Her own daughter had attended the camp and it had been life changing for them both. “After CampedUp, my daughter had great interest in her devices,” Ketty told me. “At audiologist appointments, it was my daughter – not me – who asked the majority of the questions. She gained a confidence and interest in her devices she didn’t have before. She had taken ownership of her hearing loss!”

I signed Sonya up that afternoon.

For two weeks, Sonya has attended the camp. I can’t say enough positive things about it. Created and operated by Hearing Loss Specialists, CampedUp provides a unique community in which children like Sonya can socialize with other hearing aid and cochlear implant users of different ages, gain self advocacy skills and above all have a wonderful time.

“We recognized the need for kids to have an opportunity to form relationships with other children with hearing loss, outside of a therapy setting,” says Dana Selznick, co-Founder of CampedUp and a Hearing Education Specialist. “We wanted to create an environment where campers can play, create and build a community among their peers starting at a young age. Brittany Prell [CampedUp’s other Co-Founder and Hearing Education Specialist] and I grew up going to camp and our experience helped shape who we are today. We wanted our camp to have the same impact on their lives as it did ours.”

So far, Sonya has enjoyed projects such as marble painting, creating a color changing chameleon, meeting a “real life” princess and a super hero, decorating paper fans with bubble art and making homemade bouncy balls. The highlight was a reptile show!

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Note that the reptile guy is wearing an FM around his neck which is synced to all the kids’ devices. “All the kids love seeing that they are not the only one wearing an FM,” Dana says.
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Can’t believe this is my kid. Brave girl!

While Sonya attends half days, the camp goes from 9 a.m. to 3 p.m. each day. Kids enjoy a morning snack and an afternoon “fun with foods” activity (yesterday they churned butter!). A hot meal is provided during lunchtime.¬†Each afternoon kids play water games on the roof of Stephen Wise synagogue and this week (among other activities) will meet children’s book author (and speech pathologist)¬†Fara Augustover, author of Harmony Hears a Hoot, a story about Harmony an owl who has hearing loss.

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Sonya, a turtle, and her counselor/Co-Founder of Camped Up Dana Selznick

“As a hearing education service provider during the year, I typically see these campers in a mainstream school setting. It’s great to connect with the campers outside of an academic environment and to see them build friendships with other kids wearing cochlear implants and hearing aids. I love to see that ‘aha’ moment, when they realize that there are other people just like them.” – Brandi Prell, CampedUp counselor.

One of the most valuable lessons CampedUp teaches to its campers is self-advocacy. These skills are interwoven into the activities campers do all day long. “We foster conversations among our older kids about their hearing loss and talk about how they describe their hearing loss to their hearing friends,” explains Dana. “Campers share what they like about their listening devices as well as challenges that they may have experienced, so that the campers can help each other problem solve solutions.”

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For CampedUp’s younger kids: “We read stories about characters who, like them, have hearing loss. We also encourage campers to include their listening devices in their art work. Throughout the entire camp day, campers are encouraged to identify when they need a word repeated. We help them figure out how to find the best seats for their listening needs. Campers also learn to take care of their equipment during sprinkler time when we are taking off and switching devices,” she says.

As I put Sonya to bed the other night, she asked me, “Mom, do we have camp tomorrow?”

“Yes,” I responded.

“Okay, good.” she smiled sweetly, “I love to go there.”

Pretty sure I made the right decision here ūüôā

For more information on CampedUp, visit http://www.campedup.com or email info@campedup.com

 

Ideas for Storing Cochlear Implant Equipment

When we came back from Sonya’s cochlear implant activation, we received two large suitcases (one for each processor) filled with equipment. Learning how to use the equipment has been one challenge. Figuring out how best to store it has been another. I thought it would be helpful to walk you through how we have stored her devices and equipment!

As I discussed in the video, storing the various chargers, cords, etc., is challenging. The Grid It is an amazing tool. It is compact and fits tons. We LOVE IT.

Hope this is helpful! Look forward to learning any tips parents might have for storing their equipment. And I should probably start dealing with my “broken equipment” container ūüėČ

 

 

Five Takeaways After a Failed IVF Cycle

“Missy, I am calling to discuss the genetic results from your Counsyl test,” my OB said over the phone one February afternoon in 2014. At the time, I was just ten weeks pregnant. Like many Jewish couples, Yan and I underwent genetic screening early in our pregnancy. Prior to this call, my main concern as a newly pregnant working woman in America was how to attend the numerous doctor appointments when my job wasn’t showing much flexibility. This concern soon changed.

The doctor’s voice slowed as she delivered the news. We are both carriers of a hearing loss gene called Connexin 26, she told us. This means a one-in-four chance that the child I was carrying would have profound hearing loss. I remember how the doctor paused after she gave us this information, as if to prepare us for another blow. “You will also need undergo IVF for any future pregnancies, if you want to screen for the hearing loss gene.”

For those who are new to the world of fertility problems, IVF is the process of fertilization by extracting eggs, retrieving a sperm sample and then combining an egg and sperm in a laboratory dish. Since we have a known genetic issue, the embryos are then sent to a lab for preimplantation genetic diagnosis (“PGD”), where a cell is removed for genetic testing. The goal at the end of the process is to have at least one embryo that is tested for chromosomal normalcy and for known genetic mutations, which is then implanted back into the uterus where it will hopefully establish a pregnancy.

Three years later, I found myself at NYU Fertility Center, where I underwent a full physical, a saline infused sonogram (to ensure the fallopian tubes are functional and that the uterus is normal) and what seemed like 20 vials of blood before I was determined a candidate for IVF and PGD testing. Four months after that, I had completed a cycle. We had spent thousands of dollars. My body hurt. My emotions were all over the place.  And unfortunately, we will do it all over again in the coming months.

For parents in our shoes who are confronting the reality of screening future pregnancies for genetic hearing loss, I thought I would share my main takeaways:

  1. The timeline is SLOW especially when you include PGD testing.¬†Once I was cleared for IVF, we started the PGD testing. Yan and I both gave blood. Sonya gave a cheek swab as did our parents (they were able to mail them into the lab). From there, the lab went to work creating a “probe” which is a test they perform on the future embryos. We could not start the IVF process until the probe was complete, which took about eight weeks. We used Natera to create the probe, and they were great to work with.Once the probe was complete, I had to wait until my next period. The IVF cycle started on day two of my period and was complete around 12 days later. Then I had the retrieval, where the eggs are removed from the ovaries. Four weeks later, the results. All-in-all, it took five months from beginning to end. My future cycle will not take as long, however, since the probe has now been created and can be reused in the future.

     

  2. The injections were the least bad part of IVF.¬†My prior knowledge of IVF was limited to the fact that there were injections. Lots of them. And I would have to do them myself at home. The idea of the injection is much worse than the reality, however. In fact, they weren’t hard to administer at all (especially after childbirth, I mean, come on ūüôā Every morning and/or evening I administered at least two different medications subcutaneously – meaning just under the skin. The needles are short. Having my eyebrows threaded every couple weeks is WAY worse ūüôā My favorite part of this process was forcing Yan to watch. It completely freaked him out and I definitely dramatized the pain. I considered this my revenge for the fact that for women IVF is a bitch of a process. Men have no idea.How the medications affected me, however, was another story. Manic is the best word to describe it. The first week, I felt great. Bloated sure, but great. I was happy. I went shopping and bought way too many clothes. I explained to Yan later that this was due to the increase in estrogen levels (although it also could have been due to the fact that the Summer ’17 collection at Joie was pretty cute this year ūüôā

    The next week things quickly went south. My mood tanked. The smallest annoyance or frustration would cause me to break down and cry. While I was completely in love with Yan the week before, this week I wanted to murder him. Poor Yan. Even Sonya noticed the drastic mood shift. To this day, she continuously asks me “Mama are you happy?” I wish I could have hid my emotions better.

  3. The retrieval especially was tough.¬†This was the first time I had gone under full anesthesia, so I didn’t know what to expect. I cried as soon as I woke up from the pain. The nurses administered some kind of narcotic that helped. I was up and walking a few hours later but still incredibly sad. It took about two weeks for the hormone levels to stabilize. Worse still was the fact that I was bloated for a month after retrieval. I looked six months pregnant and felt I had nothing to show for it.
  4. The odds are not in your favor. At my retrieval, I was thrilled to learn I had produced 23 eggs. An excellent number. Of those, 19 were successfully fertilized, nine embryos survived the five day mark, and a month later learned none – not a one – were normal. As you can imagine, we were heartbroken. I blamed myself. I thank God that I had such amazing support from Yan, my family (especially my mom and Yan’s mom who both flew to New York to take care of us during the cycle and after the retrieval), and above all, a beautiful and smart Sonya already in my world. I don’t know how I would have coped without them.
  5. A healthy pregnancy truly is a miracle. The most important takeaway for me was the realization that while healthy babies are born every day, each one is truly a miracle. I don’t think I truly understood that until enduring a failed IVF cycle. I’ll never forget it.

 

In much happier news РSonya is now riding her scooter like a pro! Even better, the Bern helmet is awesome. She hears everything with it!

 

What to Expect When You’re Expecting A Child With Hearing Loss

Today, more parents are learning that their children have hearing loss earlier than ever before. According to the NIH, about 2 to 3 children of every 1,000  in the United States are born with detectable hearing loss in one or both ears. And more than 90 percent of those cases are born to hearing parents.

For parents like us, who have children born with profound hearing loss, here is what you can expect that first year once they fail their initial hearing screen at the hospital:

Genetic testing: Because Yan and I are both Jewish of Ashkenazi descent, we did a Counysl prenatal screen when I was about 10 weeks pregnant. At the time, it was an annoying inconvenience, but in retrospect, it was the most important test of my life. The test confirmed before Sonya was even born that Yan and I were both carriers of a non-syndromic hearing loss gene (meaning no other symptoms aside from hearing loss) called Connexin 26. It was devastating news to receive while pregnant (I discuss receiving the call from our doctor here), but it gave us the information we needed to move forward quickly once Sonya was born and had failed her hearing screen.

In addition to us taking the Counsyl test, Sonya also received genetic testing when she was 14 days old to confirm the cause of hearing loss. This was not an easy time to say the least, but I am grateful we accomplished it so early.

Auditory Brainstem Response (ABR):¬†A¬†more sophisticated way to diagnose hearing loss conducted by an audiologist. For an infant, this is a long – but painless test – which measures the reaction of your child’s auditory nerves to sound. It is safe and it does not hurt your child.¬†For babies younger than six months, it is done while he or she naps. Sonya did an ABR test twice when she was about two weeks old.¬†

At this point, Sonya was diagnosed as deaf. We received loner hearing aids immediately from NYU.

Evaluations to determine candidacy for Early Intervention and the Deaf Infant Program: Soon after Sonya failed her ABR, I contacted Early Intervention. The Early Intervention is a state-sponsored program that supports families from birth to three who have disabilities or developmental delays. The first step is for the child to be evaluated. A case worker came to our apartment and asked us basic questions, and at that point determined Sonya would be a candidate for EI services.

The next step took place at the Center for Hearing and Communication in Manhattan. We made the schlep downtown (the first of many) and had her evaluated by speech therapists and audiologists. The process took a few days, but ultimately, it was decided that she was also eligible for the Deaf Infant Program, a privately funded program that provides speech therapy services (and transportation to and from a speech therapy center) for children with profound hearing loss in New York.

Lots and lots of speech therapy: Sonya started speech therapy through Early Intervention and the Deaf Infant Program at three months. This included two to three 60 minute individual speech therapy sessions a week and a group therapy session. She also received her own pair of hearing aids through Early Intervention.

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Speech therapy at approximately six months


Evaluations to determine candidacy for cochlear implants:¬†At four months, we took Sonya to NYU’s Cochlear Implant Center¬†where a team of audiologists and speech pathologists determined after numerous tests and evaluations that Sonya would be a good candidate for cochlear implants. We also met with Dr. Tom Roland, the surgeon, around that time – who gave us a bit more information about what the surgical process.

MRI:¬†While all other evaluations pointed to cochlear implants as having the greatest benefit for Sonya, Dr. Roland required an MRI to be conducted to ensure the anatomy of Sonya’s ears were suitable for the devices. It’s never easy to put your baby under anesthesia, but after two failed attempts at CT Scans, I was game. The MRI gave the doctor a detailed view of Sonya’s ears, and it gave us a glimpse at what the surgery day would be like as it took place at the same hospital and prepped us for what it would be like for Sonya to go under anesthetic.

A few days later, Sonya was cleared for the surgery. We scheduled it for when she was seven months old.

Choosing a device: Many families struggle with the decision as to which device is best for their child. Between Advanced Bionics, Cochlear and MED-EL, the choice is not always clear. We opted for Cochlear because the internal component was the smallest and the newest at the time (2015). That said, I know many families who went with Advanced Bionics and have been very happy with their choice. Ultimately, all of the companies have great reviews and there is no research I am aware of that shows one device has better hearing results than the other.

In addition to the brand, you will also need to choose the color of the processor and coil. Parents usually go by hair color. We went by skin color because Sonya had no hair at the time.

The surgery: See my post on Sonya’s cochlear implant surgery here.

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One day post surgery. Sonya bounced right back! We took off the bandage the next morning.

Activation: Two to three weeks after the surgery, the cochlear implants will be activated. This is the first time your child will hear. Check out my post on Sonya’s activation here – which includes videos of the actual activation of the devices.

As you can see, the timeline is not easy. But then, THEN!! you will have a little one who hears! I am tearing up watching this old video of Sonya who couldn’t yet speak at less than a year, but definitely could hear!

And before you know it, a couple years have passed and she is talking on par or ahead of her hearing peers. Thanks speech therapy!

 

 

 

How to Tell People Your Child Has Hearing Loss (And How to Respond)

We sat around a circle in a colorful nursery school classroom. Our babies in front of us, propped up on pillows. Sonya was only three¬†months old at the time. My breasts throbbed in pain as I had plugged ducts once again – but this was not a breastfeeding support group — as desperately as I wished it were. I can’t help but find the humor in that I just wished I were with a group of strangers talking about my breasts!

No, this was “group therapy” for new parents of babies with various degrees of hearing loss.

“Hi, I’m Missy,” I said, louder than intended. “This is my daughter Sonya. She is three months old. She is profoundly deaf.”

Profoundly deaf. How silly I was. As if the term deaf didn’t already imply profound hearing loss, but I was new to this.

As a new mom to a child with hearing loss, I struggled to describe my child’s condition. While my immediate family knew, Yan and I had yet to tell any friends or distant relatives. My greatest anxiety at the time was how do I tell¬†people Sonya is deaf when I had trouble saying the word “deaf” without falling to pieces?

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We decided to¬†tell people one-by-one, or not at all. This was emotionally very taxing. I didn’t feel it was something I could say by phone, so we just waited until an in-person meeting naturally arose, and then tried to play it casual (which in retrospect, was very very awkward.)

“Yeah, so Sonya is actually deaf.” I told my good friend who had come over for brunch.¬†

“Oh,” she said. Her face expressionless.¬†

“Yeah, we were really shocked. But we are looking into her getting cochlear implants, which are really amazing.” My eyes filled with tears but I grinned¬†through¬†it.¬†

“Yeah – she won’t even be deaf then.”¬†

The conversation moved on. And I was devastated by how cavalier my friend’s response was to our situation. But the fact was, I had put her on the spot. She had no idea how to react (how could she?) In another instance, we had the opposite reaction.

“Sonya can’t hear.” Yan told his friend. “She has a genetic mutation. It’s pretty interesting actually, she will probably get cochlear implants.”

“I’m so sorry. I just can’t get over the irony,” his friend replied. “Two people who love music so much….”

It was kinda like he had twisted the knife. But we just smiled politely and moved on.

Now, these were just a couple terrible responses. We also received many very kind and warm and empathetic words of support, which I hold dear to this day. I wanted to relay the above experiences because a friend of mine took the opposite approach when informing friends of her child’s hearing loss.

She simply sent a mass email.

Her email was short, optimistic, honest and explicit. She didn’t delve into her¬†heartache or fear, but she she also didn’t pretend all was hunky dory. Rather, she let her friends and family know that while her child is¬†doing very well and is a great joy to their lives, they were¬†born with profound hearing loss.

I think sending an email is wonderful solution. I came up with the below template in case it is helpful for parents out there.

Dear family and friends. 

Sonya¬†is a very special baby, and the birth announcement can’t possibly say it all. We feel so lucky and blessed to be her parents. Sonya was born with profound hearing loss. We want to give you time to adjust to the news so you won’t feel the need to have an immediate response. We would love for you to meet her. She is intelligent, beautiful, bubbly and full of curiosity. We are very optimistic for her future as she is a likely recipient for cochlear implants, which will afford her the ability to hear most everything. We are still gathering information, but will keep you apprised. Please don’t hesitate to reach out.

Love, Missy and Yan

And for those out there receiving the news that your friend’s child has hearing loss, here are some tips on what to say and what not to say:

What Not to Say 

“I’m sorry” Any statement that contains pity was not pleasant to receive and didn’t convey the feelings I had about my child at all. I felt blessed from the moment Sonya was born.

“It could be worse” statements felt like the challenges we were only starting to understand were being minimized.

“I think this happened to you because you can handle it.” or “God gives special children special parents.” Implies that my child’s situation is so awful only I would love and care for her. Also, trying to explain to a parent why God did something is rarely¬†helpful.

What to Say

I think congratulating the new parents is the most important thing you can say – because they deserve to be congratulated.

Offer to help. If you know of someone who has cochlear implants already, offer to connect them. We were taking Sonya to multiple appointments a day for months after her birth – so meals, offering to babysit, etc. are great ways to respond.

“She looks just like you.” I loved it when people complimented Sonya’s looks or behavior. Still do ūüôā

Acknowledge the grief the parents are feeling. “I know I can’t take the pain away, but I wish I could.” Or, “There will be challenges but the love and joy will be so intense you will not be able to imagine your life without this little girl!”

 

 

Do you have other ideas on how to discuss hearing loss that worked for you? I would love to hear about them!

 

 

Sonya Sings All the Time

In the mornings, as I push Sonya down West End Avenue in her stroller, Sonya sings. Loudly. ¬†Sometimes she takes requests. Most of the time she sings to her own¬†soundtrack, on repeat. It’s pretty cute. Strangers often smile as we pass. I love to sing too, so I sometimes try to accompany, to which she immediately¬†protests. “Stop Mom! It’s my turn! Okay?”

During our walks, Sonya sings the ABCs, Mary Had a Little Lamb, Fr√®re Jacque (en Fran√ßais – pas mal!), Songs of her own invention and her favorite new song “The Orange Room class song.” The Orange Room is Sonya’s room at nursery school. She attends a mainstream two’s program at the Nursery School at¬†Habonim.

 

The Orange Room is the place to be
We learn to count. One, two, three
Music, yoga, science too
Our school colors are orange and blue!
The Orange Room is the place to be
We’re as happy as happy can be!

I can’t help but feel this is pretty amazing progress considering Sonya was born deaf and has¬†worn bilateral cochlear implants since she was eight months old.

According to AudiologyOnline, singing has positive effects in cognitive, linguistic, memory and music perception¬†for kids with hearing loss. At the Center for Hearing and Communication, where Sonya receives her speech therapy services, we were encouraged to incorporate music into Sonya’s life from her earliest days with hearing aids. They even secured free classes with Music Together, which Sonya loved.

While Sonya often sings to express joy, she also turns to music when she is angry.¬†¬†Her current ‘go-to’¬†angry song¬†is one she wrote herself. It goes:

I don’t like
I don’t like
I don’t like
Mommy Missy!

As I often discuss on this blog, when we learned Sonya would need cochlear implants we were initially very concerned about what this would mean in terms of her appreciation of music. Now, Sonya hasn’t yet demonstrated tone or pitch accuracy. She often starts a song in one key and ends up in a different key. According to AudiologyOnline, most kids develop¬†this skill by kindergarten, though these¬†are skills that might be more difficult for someone using cochlear implants. Cochlear implants were developed to access speech. Music is more complex. But, clearly, there is much we don’t understand about electronic hearing. Despite the obstacles, Sonya loves to sing. She loves to dance. And for the time being, she seems¬†to enjoy¬†it as well as her friends who hear acoustically.

Sing it Sonya!

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