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?”
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
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.
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.
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.
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:
Back in the fall, I had an opportunity to attend Cochlear’s Back to School Night in New York City.*
Cochlear presented its newest device, the Kanso. If you haven’t yet read about it, the Kanso is not worn behind the ear, like most cochlear implant sound processors. Instead it sits on the user’s head (where Sonya’s coil currently is stationed).
It’s a pretty exciting development. It’s much more discreet and comfortable, especially if you wear glasses. It is available in eight colors, so the device should blend into most hair colors.
While it is the smallest and lightest off-the-ear sound processor on the market (Med El also has the Rondo), the folks at Cochlear said its technology matched that of the Nucleus 6 processor.
The Kanso is a cool option for adults – but it is clearly not for pediatric use. The device is too big and heavy for someone as young as Sonya to wear comfortably. It jets out more from the head than her current coils. I am also concerned about the location of the microphone. Rather than sitting behind her ears, it would be placed on her head at the location of the implants. It seems that more research needs to be done before we truly understand whether placement of the microphone matters, but in the meantime, I would defer to placing them as close to the ear as possible.
Unlike the Nucleus 6, the Kanso only uses disposable batteries.
Despite these downsides, it is very exciting to imagine having just one device, rather than the three components (processor, coil and battery) that we currently must use (for each ear – in Sonya’s case). Just this week, I had to replace two wires that connect the coil to the processor because they continually wear out (similar to headphone wires). An all-in-one solution is certainly one that we look forward to.
A Mini Mic is useful for noisy places like crowded restaurants, where background noise makes it difficult to hear.
I simply clip it to my shirt, and it amplifies my voice so that Sonya can hear me above the background noise. The newest device has a much longer battery life (11 hours compared to 3-4) as well as a low battery indicator light.
While it is certainly a great accessory – the Mini Mic does not replace Sonya’s Phonak Roger Inspiro – which she currently uses in school. I was disappointed by this, as the Roger is bulky and not user friendly. It also requires her to use FM receivers that attach to her cochlear implant devices making them even larger. The Roger is more expensive (around $1000 compare to $295 for the Mini Mic 2+).
At school, Sonya’s teacher wear the Roger around their neck
And Sonya wears receivers that attach to her processors (the piece that jets out). This allows her to hear their voice above the background noise of the classroom
However, the Roger beats out the Mini Mic in two areas:
1. The Roger has the capacity to hear beyond walls and obstacles in the classroom. The Mini Mic does not. This is a critical advantage. With the Roger, Sonya hears her teachers voice regardless of where she sits in the classroom. Were she to wear the Mini Mic – the sound could be disrupted.
2. TheMini Mic microphone is not always at optimal distance from the speakers mouth. While the Mini Mic is certainly more comfortable to wear, the teacher must be trained to understand where to place it exactly for optimal sound quality. If it rubs against a shirt collar for instance, the sound of the rubbing will be relayed to the listener. It sounds like a minor issue, but any such sound would be tremendously distracting for the listener.
Readers: look forward to any comments related to assistive listening devices you love. Have you tried any new products that have helped or not worked?
* And very sorry for the delay. It has been a hectic winter…
Sonya was born deaf, but she was also born into an amazing age where symptoms of hearing loss can be relieved. When she was just seven months old, Sonya was implanted with cochlear implants which provide her a solid range of sound – particularly within the vocal range. Because of this technology, she is learning to speak and listen (and at two-years-old is on par with her hearing peers in terms of speech and comprehension!)
While cochlear implants are an amazing solution – they do not cure hearing loss. For example, Sonya likely does not hear music as we do. She likely does not access the subtlety and grandeur of sound that we are afforded.
But imagine, one day, if there was a way to restore hearing loss — even for people who have cochlear implants.
This week, we met with Dr. Robert Jackler, the lead researcher at the Stanford Initiative to Cure Hearing Loss and Dr. Stefan Heller (who runs Heller Lab at Stanford) and whose mission is to create biological cures for major forms of hearing loss. Unlike other institutions which are focusing efforts on improving the symptoms of hearing loss, Stanford is working to address the (main) underlying problem: loss of inner ear sensory hair cells.
Let me explain. We are born with thousands of hair follicles that live deep within the inner ear — inside the shell-shaped cochlea. These hairs transmit vibrations to the brain, which interprets those vibrations as sound.
For Sonya – who was born with a genetic mutation (Connexin 26) – and is missing a necessary protein to grow the above hair follicles – the diagnosis of deafness seems intangible. But Dr. Jackler and his team believes such hair follicles can be regenerated. To do so, Stanford has pulled together researchers in four key areas: stem cell therapy, gene therapy, molecular therapy and targeted neural stimulation. In 2015, Stanford scientists discovered biological mechanisms that appear to play a role in the regeneration of cells in the inner ear. They have also been able to regenerate such hair cells in mice.
Dr. Jackler brought up one avenue of research, that is particularly compelling. Many children suffer from hearing loss because of complications at birth. Aminoglycoside antibiotics are given to babies (especially in developing countries) to prevent infection. Yet, for some infants, the use of these drugs can cause hearing loss. Aminoglycoside antibiotics can travel into the inner ear and kill hair cells. Stanford researchers across an array of disciplines are very close to developing a way to protect the inner ear, while still allowing the drug to kill bacteria – thereby saving the patient’s hearing. This development would literally save millions of babies from hearing loss.
To many, Stanford’s Initiative to Cure Hearing Loss might seem too challenging, too expensive, too far out there to fund. Investments in hearing loss technology including hearing aids and cochlear implants have been society’s focus – but I would urge people not to disregard such research. The future of all our ears depends on it.
A MAP is a program that optimizes a cochlear implant user’s access to sound. The audiologist connects Sonya’s processors to a computer. Sonya then hears a series of beeps and the audiologist measures her response.
As an infant, measuring this response was rather tricky. The audiologist might observe a change in eye movement, a head turn or Sonya might stop moving. All of these behaviors indicate that Sonya was hearing the sound. Upon seeing such behavior, the audiologist would light up a black box with a toy playing the drum (or something similar). This would condition Sonya to look at the box when she heard the sound. Thus, the audiologist was able to get a sense as to which sounds Sonya could and could not hear.
Now that Sonya is two, her mappings are a bit different. When Sonya hears a sound, she puts a coin in a piggy bank. She is still working on this skill, but it is a much easier/accurate way to determine whether or not she hears the sound.
First the audiologist sends the sound directly to Sonya’s processors. We don’t hear it. Only she does. Then, the audiologist turns her processors on to detect noises in her environment. In the videos below, you can watch Sonya listen to the sounds through her processors at first – putting a coin in a pig each time she hears the sound. Then, she will repeat sounds, which shows us that she is hearing the sounds in her environment as well. The sounds that Sonya is asked to repeat are called “Ling Sounds”. Ling Sounds are different sounds which vary from high to low pitch. They are considered the range of speech sounds needed to acquire language.
Sonya’s speech therapists use the below Ling sound symbols when working with Sonya . When Sonya is presented with an airplane, for instance, she knows to make the “ah” sound. It’s another way to make sure she is receiving the auditory input necessary to speak.
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.
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!
Several weeks ago, Sonya started a twos program! Considering the fact that she has undergone speech therapy at the Center for Hearing and Communication since she was just four months old, including group speech therapy with other kids her age, Sonya was more than prepared. I on the other hand….wasn’t quite as prepared.
And the issue was not Sonya’s preparedness. Rather, my ability to understand and demonstrate to her teachers how to use her FM System.
While Sonya’s cochlear implants allow her to hear a great deal in a quiet setting, many children who wear them still have difficulty hearing a teacher’s words when there is lots of background noises and over long distances. An FM system is an assistive listening device (or ALD) which helps a child hear the teacher and their classmates above the noise of a typical classroom.
To get a sense of how hearing loss is worsened when confronted with such conditions, take a look at the following eye-opening demonstration:
As we walked into the classroom, I realized that it was up to me to ensure that Sonya’s teachers understood how to use this bulky and not exactly user-friendly piece of equipment.
I found myself fumbling with it and with Sonya’s processors to ensure it was working. I got a bit obsessed making sure that her processor lights were blue (indicating that they are connected to the FM). I thought I was somewhat on top of it until the yoga portion of Sonya’s school day began. The yoga teacher of course was happy to wear the device, but I realized it was not working at all. The microphone which is supposed to attach to the teacher’s collar kept slipping off, and the FM system around her neck became tangled. It was obviously uncomfortable for her. She did her best, but the technology just could not keep up with a physical class.
At some point, I just felt helpless. Sonya is not old enough to describe what she is hearing. She can’t tell the teacher whether she is hearing their voice, or if the FM system is just picking up static (which sometimes happens if the system picks up unintended sound signals and needs to be switched to a different channel). I was not prepared and I didn’t have the knowledge to serve as her teachers’ teacher in this regard.
Thankfully, the CHC is able to come to the rescue. They will be sending a hearing loss educator to the classroom next week to explain how to use these devices to the teachers (and to me too).
I am a big fan of the Mini Mic (as I have dscussed before). We have used the older model a ton, be it at the American Museum of Natural History, at noisy restaurants or even on airplanes. The newest device has a much longer battery life (11 hours compared to three) and includes a low battery indicator light. You simply turn it on, make sure Sonya’s remote is switched to the Mini Mic setting, and you are set.
The device might just be a perfect solution for a toddler attending preschool. At $395 it seems like a no brainer, but I have decided to consult with our audiologists first. I will keep you posted as to what I learn!
In the meantime, look forward to learning if other parents have tips or suggestions on using the FM System in school. What works for your child? Have you also found that toddlers are just too young for such advanced equipment?
Our daughter Sonya was born deaf but with the help of cochlear implants, she now hears most everything we do, albeit differently. Unlike hearing aids, which amplify sound, cochlear implants bypass the damaged area of the ear, and stimulate the auditory nerve directly, using electrodes. The signals produced by the electrodes are then recognized as sounds by the brain. Since Sonya is only 22 months, she unfortunately can’t describe what it is like to hear with cochlear implants.
My family’s friend Barb Cole, however, can! Barb suffered from degenerative hearing loss, and received a cochlear implant in her retirement. In the following post, Barb shares her difficult yet fascinating story:
My Cochlear Hybrid Implant Story
By Barb Cole
In the beginning, I did not realize I had a hearing loss until a colleague told me I was talking very loudly on the phone. I was only in my mid 30s, but found the need to gradually increase the phone’s volume at work, so I could hear my clients. I probably had hearing issues prior to this intervention and was not aware of them. I saw a doctor, who told me my hearing was borderline and that at this time I did not need hearing aids.
Ten years later, I decided to get my masters in special education. I finally got hearing aids in order to work with my students (children are more difficult to hear than adults for me). For the next 15 years I taught special needs students. I loved it, but my hearing was declining and I needed to make a career decision for my students and for myself – and so I retired.
At that time, I had received new hearing aids, but they were not really helping, so I looked into cochlear implants. Unfortunately, I was told I would not qualify for the devices, because I still had some hearing. My hearing loss was mostly in the high frequency range. I became depressed and frustrated. I could not understand my grandchildren or people on the phone. My hearing difficulties affected my speech. I struggled with pronouncing words correctly – especially multi-syllable words. I needed help going into stores, seeing doctors and talking with friends, It was very disturbing and humiliating.
When we moved from Minneapolis to Chicago my life changed! My new doctor said I qualified for a Cochlear Hybrid Implant. I would be his second patient and I would participate in a Cochlear study. He was so positive and understanding. I had my operation in November 2015, which went very well (but recovery was very painful). I was connected with my processor in December. I feel like I am traveling a very long journey. The doctor says it can take up to two years to heal.
My brain needs to re-learn how to hear, so working with the audiologist has been extremely important. There were some misunderstandings during post-activation, because I was so used to writing everything down. I needed time to process information before I could understand it. My brain is not used to hearing, processing, and understanding at the same time. It turned out to be an adjustment for the audiologist too – I kept trying to slow her down and repeat important information.
As my brain was trying to connect with my implant, I would hear loud chirping sounds – which is normal. This is the brain’s reaction to the new range of high frequency sounds (such as a child’s squeal or a police siren) that I am now able to hear. As the audiologist programs my processor, my range of sounds have been expanding – this is done slowly. The chirping sounds are annoying, but as the brain adjusts then they begin to fade – until new sounds are introduced. The radio, tv, and other electronic devices tend to have high frequencies, which causes more chirping sounds.
My brain is still learning to work with my implant. I do two hours of hearing homework a day – it’s exhausting. Homework includes listening to audio books and following along with the printed books. I do hearing games and exercises on my iPad and computer. My husband reads to me and I read to him. I listen to the TV, radio, etc., with captions, as I need to hear different sound sources in order to make the connection in my brain.
Over the last six months, there has been much testing and adjusting. This past June was my six-month post-activation check-up. I received the best news. My hearing is now in the normal range (at the bottom but in the normal range) under perfect conditions. The chirping sounds had lessened, which meant my brain had successfully adjusted to the frequency range. The audiologist then expanded the frequency range enabling me to hear more sounds.
One of the hardest adjustments has been dealing with people. I still need people to look at me, talk a little slower and clearly, so that I can hear and understand them. Loudness is an issue. While, I can adjust my devices for volume, when people talk too loudly the sounds I hear are distorted. I have thus lowered the volume of the TV – a big improvement. It is a bit easier to listen on the phone, but there are many variables: articulation, fluency, distortions, pitch, accents, and background noises. My pronunciation has greatly improved, however. I can now hear the difference in how I pronounce words and the correct way they should be pronounced.
Overall, I am glad I have the implant/processor, but it is a huge commitment and adjustment. Today I can hear birds and insects – even other people’s conversations!