Why Carrier Screening Is So Important to Us

When I was just ten weeks pregnant, I received a call from my doctor. She had information regarding our genetic results from our Counsyl test. I didn’t realize it at the time, but this call would shape my world. At that moment, we learned that both Yan and I were carriers of a non-syndromic hearing loss gene called Connexin 26. This meant there was a one-in-four chance that our future child (who we didn’t even know yet was a girl!) could have hearing loss.

Following the call, I locked myself in the bathroom stall at work and sobbed. I didn’t know how to process this information. To have a child who was deaf – what would that mean? What would their life be like? Would they even be a part of our society?

When we told our family their reactions were all over the board. Some were angry: “Why the unnecessary testing?” They demanded. “This is putting unnecessary stress on Missy at a critical time in her pregnancy!” As the weeks continued, however, a cloud of acceptance settled. I decided to remain in denial. My focus was to stay healthy for me and the baby – that was it. Yan, on the other hand, and our family, took action. Since they had information, they were going to do what they could to ensure that in the event our child was born with hearing loss, we would be able to take the next necessary steps and swiftly.

Having carrier screening during pregnancy (ideally before, but in our case during) was a game changer for our daughter Sonya. After a stress-free birth, free of complications (thank God), Sonya didn’t pass her hearing screen at the hospital. I knew she was deaf. A couple weeks later, we went to NYU audiology where profound hearing loss was diagnosed in both ears. Had we not had this carrier screening done, we might have followed a prominent Ear Nose and Throat doctor’s advice – which was to wait it out a couple months – over the advice of a young audiologist, who urged us to get Sonya hearing aids and to meet with NYU’s Cochlear Implant Center. We are so thankful that this information was available to us so that we could make the informed choice that was right for us.

This is why we collaborated with Counsyl to tell our story in the video above. We believe that expanded carrier screening has benefits that far outweigh any downsides of testing, including the fear of the unknown. Many parents don’t necessarily want to know – but knowledge is power and the ability to act for your child’s best interests day one, is a critical advantage. We weren’t directly compensated for this video, but Counsyl did make a generous donation to the Center for Hearing and Communication, where Sonya receives speech therapy and audiological services.

Thank you, Counsyl!

A Conversation About Hearing Loss and Education with CHC’s Dana Selznick

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I don’t know what we would do without Dana Selznick in our lives. Dana, who currently serves as Education Specialist at the Center for Hearing and Communication, provides information and guidance so that parents can make informed decisions about their children’s hearing health care. She has helped us navigate Early Intervention (EI), the Committee on Preschool Education (CPSE), the Deaf Infant Program (DIP), and the private nursery school admissions process in New York City. She also co-founded Camped Up, an amazing camp for kids with hearing loss. Dana was gracious enough to talk to us about the work she does and about advocating for children with hearing loss in the classroom:

What are the most important factors parents should look for when choosing a school for their child with hearing loss?

First and foremost, every single child is different. What works for one child, might not work for another. This can be hard for parents to grasp. Parents read the same blogs. They talk to each other during group therapy. They compare their children to their friend’s kids. It’s natural to do so. But parents must remember: what works for one child will not necessarily work for their own.

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Dana has many fun ways of encouraging letter recognition. Recently she had Sonya create an “I Spy” jar, filled with rice and small letter beads. Once the jar is filled we can look for the letters, identifying their name and sound.

It’s important to Look for teachers who recognize a child with hearing loss needs accommodations BUT who also treats that child as any other in the classroom in terms of expectations for success. This is a tricky balance. Some schools are so focused on the accommodations and ensuring they have all of the things a student might need, they forget to push the student. They fail to challenge them. This is a major disservice to any child.

Also, pay attention to the school environment -in particular the acoustics. It’s an advantage when you walk into a classroom and see carpeting on the floor and stoppers on chairs, all of which help to lower sound level in the classroom. That said, this is something we can fix. I work closely with a number of schools in Manhattan and help to ensure their classrooms are in good shape from an acoustics stand point.

Now I will reiterate again the fact that every child is unique and has different needs, typically, I do find that schools with some structure to be beneficial to children with hearing loss. Some schools are free-play-based with little structure. Their philosophy is that as they child grows and develops, the child is encouraged to explore on their own and figure out who they are. For kids with hearing loss, however, we want schools that will work with a child’s speech therapist to pull and encourage language. To hold verbal communication above the importance of free play all day.

What kinds of questions should a parent ask when interviewing a school?

Parents should ask schools how they differentiate for their students. They can usually learn this by looking at the school’s philosophy. Schools that believe in an individualized education plan, that describe every child as an individual with their own unique needs, typically will adhere to a philosophy we can work with. When you are on a school tour, listen to how the admissions team talks about their school. Do they describe their kids as unique individuals? Pay attention to the art that hangs on the walls. Every child’s work is going to be different. How does the school reward that?

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What advice do you think is most important for parents when working with their kids’ teachers?

Start the year off by introducing your child and make their listening needs known to the teachers. Present your child’s teachers with your child’s hearing background. Make sure the teachers understand how to use any assistive listening devices needed such as an FM unit, and ensure that they know basic troubleshooting for equipment. Make sure the teachers feel comfortable using this equipment.

Provide teachers with a professional that they can speak to if they have any questions. Often, teachers don’t feel as comfortable asking questions to the parents as they would a professional.

Be involved in any way you can! Have ongoing meetings with your child’s teachers, beyond parent-teacher conference time. Ideally, you want to stay involved so that you are not just contacting the school when something goes wrong. Whether you are involved in the PTA, volunteer for class field trips or volunteer remotely via email (lots of schools have volunteer opportunities for working parents), you can connect with your child’s teachers in a more casual setting and can get a better sense of how your child is doing in the classroom. You need to trust your educators and your therapists, but when you are there first hand, you really will know what is going on and can contribute to your child’s IEP meeting in a more valuable way, which will benefit your child. Ultimately, by being involved you are ensuring that the school knows you, knows your child and brings you all together as a team.

Additionally, I would encourage parents to look at some fact sheets we developed to address this exact topic. They include:

Tips for Teachers of Children with Hearing Loss fact sheet

Tips for Teachers of Preschooler with Hearing Loss fact sheet

For people considering being a hearing loss education specialist, what advice would you give?

You can’t always have a plan. It will change minute to minute. I could be here sitting with a student and I can have a plan for how the whole activity is going to go and realize it is just not working and I need to pull something else out. This comes with experience. It is hard your first few years of teaching to always have something on the back burner to be able to do. But you will need it. Trust me.

Many teachers of the Deaf are itinerant teachers who go from school to school, working with different kids in mainstream classrooms. I did this for many years before working at CHC and I loved being able to connect to the students on a different level than their classroom teacher. That being said, it can also be a very difficult position. You have to be able to adapt to each school’s philosophy. To each child and to each family you are working with. You also have to keep in mind that you are the expert. You can walk into a classroom and the teacher has been teaching for 40 years, but they have never taught a child with hearing loss. You are the expert. You need to learn when to push back and when to pick your battles.

A significant part of your job is working with children who have hearing loss on literacy skills. Why is it so important that kids with hearing loss work on literacy skills early on?

I love literacy! A big piece of it is I grew up with learning disabilities. I had trouble learning to read. I didn’t start reading until second grade. My parents are often amused by the fact that I am now teaching three-year-olds to read because I wasn’t reading until quite late. I had a very difficult time with it. I believe this has helped me understand that every child learns differently and it is important to find the right strategy for each individual student. It’s a known fact that kids with hearing loss struggle more with reading than their hearing peers. I truly believe that early exposure to reading can only help. To be clear, we aren’t pushing them or grading them, we are simply exposing them. So when they start to hear letters and letter sounds in school later, it will not be the first time they are hearing it.

As an educator, I enjoy giving support to older children who needs remedial work, but if we can get them to read sooner and not feel that sense of struggle with reading, it’s so worth it. These kids have enough challenges on their plate, be it listening, dealing with background noise, explaining their hearing loss to their friends and teachers, why not give them a little foundation now so that they are confident? So that they will feel better in the classroom setting? That they won’t be nervous or embarrassed that they are pronouncing a letter sound wrong.

A bit verklempt now! I know what a difference this has already made to Sonya. She can be hesitant to try new activities, so giving her a foundation in reading early on I know will make a huge difference. 

Thank you, Dana, for sharing such incredible advice and insight!

P.s. I wrote about Sonya’s experience at Dana’s amazing Camped Up, a camp for kids with hearing loss here.

Dana’s colleague Liz Ying also recently shared her thoughts on speech therapy for kids with cochlear implants here.

ADA, IDEA and Section 504: What Parents of Children with Hearing Loss Should Know

Parents of kids with special needs should know their rights under ADA. Check out key aspects of the law pertaining to hearing loss here!:

When I was a little girl, I would often come downstairs to see my mom, Barbara Mandel, tutoring a child with special needs. She obtained her masters in special education while I was in elementary school. By the time I entered high school, my mom had developed a thriving business testing students from high school to post-secondary for disabilities and, when necessary, providing those students with accommodations. The idea that we all gather and express information in our own unique ways, was preached to me from an early age

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Today, I have a three-year-old daughter who was born deaf and who wears bilateral cochlear implants. Technically, she is considered a child with special needs, and I have gone back to my mom more than a few times to understand what rights Sonya has under US disabilities law, including: ADA – the Americans with Disabilities ActIDEA – The Individuals with Disabilities Act and Section 504 of the Rehabilitation Act. While I haven’t had to use this information yet, I am sure I one day will and I thought other parents in similar shoes would benefit greatly from knowing their children’s legal rights as well.

Can you explain what IDEA is and who it protects?
IDEA stands for The Individuals with Disabilities Education Act. It is a federal law that governs early intervention, special education and related services for disabled schoolchildren K-12. IDEA requires that a public school create an Individualized Education Plan (IEP) for each child with special needs. IEPs are developed by a designated educational team with the goal of tailoring a child’s educational program to meet his or her individualized needs so that they can find success in the K-12 education system.

And what is Section 504 and who does it protect?
Section 504 is a civil rights law that protects individuals from discrimination based on their disability in connection with any public or private program or activity receiving federal financial assistance. A 504 Plan is developed when a K-12 student needs certain accommodations and modifications to the physical space of the school or the learning environment (as opposed to the educational program itself). Section 504 expands beyond K-12 and protects post-secondary students with disabilities as well. To note, Section 504 states that post-secondary students must have the opportunity to compete with their non-disabled peers (as opposed to IDEA which promotes finding success in a K-12 educational environment, A post-secondary 504 Plan ensures equal opportunity only).

What is the ADA and who does it protect? 
ADA stands for the Americans with Disabilities Act. ADA protects the rights of all Americans who have mental and/or physical medical conditions, including hearing loss.

How does ADA apply to children who are deaf or hard of hearing?
For children (ages 3-21) with hearing loss, Titles II and III of ADA are most relevant. Title II requires public entities (including public schools) to ensure that communication access is as effective for children with hearing loss as it is for their typically hearing peers. Upon request, schools have to provide the student with hearing loss auxiliary aids or services. Title III expands ADA to apply to almost any place open to the public including private schools (with the exception of private clubs or religious institutions).

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What do auxiliary aids and services for students with hearing loss entail under ADA?
This means that students who request it can receive qualified interpreters, note takers, an exchange of written materials such as notes, computer-aided transcription services (“CART”), assistive listening systems such as an FM system, accessible electronic and information technology and captioning.

Under ADA the person with hearing loss gets “primary consideration” when requesting an aid or service.
”Primary consideration” means it’s up to the person with hearing loss, not the school, to decide what services or aids are most appropriate. The school must honor the choice of the student unless they can prove that their choice is as effective and will give the student equal access.

And what does it mean that auxiliary aids and services need to be provided in a timely manner? What is considered “timely”?
Once the student has indicated a need for a service or aid, the public school district must provide it as soon as possible, even if the evaluation and IEP process is pending.

What about a student’s privacy?
Under ADA, privacy of the student with the disability must be protecetd. Services should not disclose the nature and extent of an individual’s disability. So while students in your child’s class will see that a child is using an FM system, it is illegal for the teacher to call out your child’s hearing loss.

My mom sent me a very cool chart at understood.org (I can’t recommend this site enough as  resource for parents!) that gives a nice overview of the federal laws and how they apply to disabilities:

At a glance

I hope this is helpful to the American parents out there reading!! Feel free to leave questions in the comments section. I’ll have my mom respond to you directly!

What It’s Like to be 13 and Have Cochlear Implants

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As a parent of a toddler with profound hearing loss, I often think about what Sonya’s life will be like in ten or twenty years. I recently had the pleasure of connecting with 13-year-old Davis James, who wears a hearing aid and cochlear implant. She was very generous to share her story and experience with me and the world. As a parent of a young child who was also born deaf, her honest responses and wise (beyond her years) perspective brings me so much insight and hope.

Can you discuss your hearing loss? When did you lose your hearing and when did you get implanted?
I was born deaf and I was implanted with a cochlear implant in one ear just before my third birthday. My hearing loss was a big blessing. There are so many new things that cochlear implant users have access to, whereas the hearing world does not.

Really? Like what?
For example, I’m able to listen to music secretly in class and not get in trouble for it. Another hilarious moment was when me and my friends didn’t do our homework for our language arts class. We had to be sent out in the hallway to finish it up and while we did, the teacher forgot to mute the FM unit and I could hear her go through the answers with the rest of the class. Of course, I shared the answers with my friends (although I did confess to the teacher afterward. Honesty is important!)

Another moment (a gross one) was when my teacher went to the bathroom with the FM unit…you definitely don’t wanna learn more about that!!

Haha! That’s so funny and gross!! Do you think you hear differently from your family or friends?
I have no idea how I hear differently. I do listen to music differently. I use a Phonak ComPilot and connect it to my phone with Bluetooth so I can listen to music wirelessly. My friends get so jealous (in a funny way) when I explain it. I was very happy that when I explained it to people, they really listened and understand how it works, really because we’re living in the age of technology.
Davis James

What challenges have you faced socially because of the implants (if any)?
I started school in a deaf/hard of hearing school. There I made lots of friends who were just like me. My best friend and I played soccer together (my dad was the coach).

When I was in second grade I transferred to a hearing school. At the mainstream school, I had to learn how to be friends with hearing people, and they had to learn what it’s like to be deaf and what I needed. Not being able to hear without the cochlear implants was equally epic and sometimes saddening (inability to understand, etc.) Socially I have faced problems as a result. A lot of times, I can’t comprehend what other people say in daily conversations. It tires me to have to turn up my hearing aid’s volume because whenever I turn it up, everything is louder. Restaurants and crowded places are the worst places to socialize. I can barely hear what other people say in conversations.

For real, I absolutely despise it when I can’t understand people unless they look at me (it’s easier when I can read their lips and listen at the same time). The bigger part of that was when I have to remind them. It is tiring! When people say things like “never mind” I feel ashamed for not being able to understand.

There are other challenging aspects, but the thing is, everyone has challenges. We learn to get through it despite our disabilities.

Do people treat you differently because of your CI and hearing aid?
I haven’t noticed so. It took me a long time to learn how to advocate for myself, though. I finally learned the day my hearing aid stopped working with the other Phonak products (like the FM system) and I had difficulty learning. I knew advocating for myself was the right path and as I progressed, I became a better advocate for myself and others.

How do you advocate for yourself?
I position myself in the classroom to optimize my hearing. I speak up when I don’t follow the discussion.

Do you do sign?
Before I was implanted I knew some sign and I learned a bit as I got older. Since the second grade, I haven’t done much signing as I have learned to communicate with hearing people.

“There are other challenging aspects, but the thing is, everyone has challenges. We learn to get through it despite our disabilities.” – Davis James, 13 

What is your favorite activity outside of school?
I played soccer for eight years, but quit when I started sixth grade because I wanted to focus on other interests. Right now, my favorite thing to do outside of school is definitely to play video games like Overwatch or Fortnite Battle Royale.

What’s your favorite subject?
Science and art.

Can you describe how you care for your CIs and hearing aid?
I care for my CIs as if they were an extension of myself. It’s pretty hilarious, I sometimes forget I am deaf because my CI is almost unnoticeable to myself. It was easy to get into the habit of taking it off, plugging in the batteries when I go to bed and taking them off for the shower. I also see an audiologist annually. I graduated from speech therapy in fourth grade since I was progressing very well.

Thank you, Davis so very much for sharing your story!! You inspire me and you are such a wonderful role model for our children!!  

P.s. if you are interested in how a CI sounds to someone who lost their hearing later in life, check out our prior post: How Does a Cochlear Implant Sound vs Normal Hearing? Barb Cole Shares Her Perspective

8 Great iPad Apps for Kids with Hearing Loss

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When Sonya was just a few months old, her speech therapist pulled out an iPad during one of our sessions and opened the game “Peekaboo Barn” I was immediately concerned. I had always been told that screen time was bad for kids. It seemed almost like a cop-out and it wasn’t until after the session when I brought up these concerns that I began to understand the benefit that this amazing device can have for kids with hearing loss.

Today, Sonya’s iPad has become one of our most important speech therapy tools. At the same time, we must use it responsibly. Our philosophy is that it is okay in small doses and in specific contexts. Sonya can use her iPad in the car or airplane, and at restaurants. We try to focus on active entertainment (i.e. games) as opposed to passive entertainment (TV shows or movies). It’s also a great way to motivate Sonya to put her CIs back on, as I wrote about here.

Here are some of our favorite games for hearing loss. I’d love to hear your recommendations, too…

Continue reading “8 Great iPad Apps for Kids with Hearing Loss”

Hearing Loss and Helmets

For young New Yorkers, a scooter is a rite of passage. Walk down West End Avenue, and you will inevitably see a two-year old child (or younger!) careen by in one. Their hands holding the handrails tightly. Their mouths frozen in a smile that borders hysteria; intense fear in their eyes.  Years ago, I swore to Yan that we would never get one for our future child.

Fast forward to this past Spring. Sonya (seated in her stroller) would point at children on scooters on our way to school. “I want that!” she told me. “I want a purple one!”

“Uh huh,” I said. Trying not to encourage it.

“Mom!” Sonya’s eyes lit up. “We can go buy one at the store!” It wasn’t a demand as much as a realization.

A week later, I gave in (yep…I know….judgers gonna judge). We went to West Side Kids toy store, and Sonya picked out the scooter of her dreams. She was so thrilled she rode it out of the store.

Here she is enjoying her first ride:

West Side Kids only had a limited selection of helmets. We went with a Nutcase helmet – mainly because they were cute (again…I know). Sonya picked one out with pink and orange flowers. The sales person removed some of the styrofoam protection on the inside, so that the coils of her CIs would not fall off as soon as we put it on.

Unfortunately, the helmet didn’t work. It either hung too loosely (and would knock of her CIs every time she turned her head) or would be too tight to put on with the CIs comfortably and without sliding her headband down her forehead in front of her eyes. It was also impossible to tell if the CIs were working or not. The helmet blocked me from seeing the front of her processors (which blink green if the CIs are working and yellow if not).

After a couple falls we put the scooter away. Sonya didn’t want to ride it anymore, and I didn’t want her to either – not until we had a solution that didn’t involve her riding without a helmet or without sound.

Per the advice of a friend (who’s son faced a similar dilemma), I took Sonya to Bicycle Renaissance to see if they could fix her helmet. After careful inspection, the salesman told me the Nutcase helmet was just not right for her. She needed something bigger with a flexible inside so that we could adjust it to fit her CIs. He suggested a Bern.

I bought Sonya a Bern Unlimited Jr. helmet from Amazon. I love it so far. The main positive is it has a velcro strap in the back that easily allows us to customize the fit to her head – with the CIs on. I can easily see the CIs blinking on her ears (as the helmet rests a bit further back on her head), and yet the coverage is still very good (with a sun visor no less). Sonya loves the bright pink color and wears it when we are home for fun. Win win!

 

Today, Sonya talks frequently about her scooter. She points to it proudly and declares “that’s mines!” each time we get out of the elevator to our floor as it sits in our hallway outside of our apartment. Unfortunately, she isn’t yet feeling up to riding it (and we aren’t pushing her to do so). She is a pretty cautious child after all, and a couple of those falls weren’t pretty. That said, I feel better knowing that at least we have a helmet that fits in the event she decides to give it another whirl (that is until she outgrows it…. I guess we have a couple months :).

Could We See a Cure for Hearing Loss in the Next Decade? Scientists at Stanford Are Optimistic

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Sonya hanging out in her favorite place: The American Museum of Natural History. She already loves science 🙂

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.

Researchers at Stanford not only believe it is possible – but within our reach in the next 10 years. Imagine what that would mean for someone like Sonya? Someone who never had use of her ears. Imagine what it would mean for the nearly 48 million Americans who report some degree of hearing loss and the nearly 278 million people worldwide.stanford

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.

Check it out: https://hearinglosscure.stanford.edu/

They also have an interesting blog where you can stay updated on their research: https://hearinglosscure.stanford.edu/blog/

 

Cochlear Implant Travel Hacks

The past couple of summers, we have been fortunate enough to spend a few weeks in Italy. Last summer, we traveled to the Amalfi Coast. It was one of the most striking places I have ever been, and we would have loved to return there. However, now that Sonya is running around, finding a place without 100-foot drops seemed important, so we opted for Tuscany.

Packing Sonya’s cochlear implant equipment is an art. Here was our checklist:

  • Two sets of processors
  • Waterproof sleeves for swimming
  • Three sets of compact rechargeable batteries
  • Two sets of standard rechargeable batteries
  • Two sets of battery-powered batteries (in case we were stranded without access to electricity)
  • Her battery charger
  • Her remote, cable and charger
  • Her Mini Mic, cable and charger
  • The Italian electrical convertors that fit each of these chargers

Last year, my suitcase was a mess of wires and chargers. It took us a couple hours to figure out which wire went with which device upon arrival. This year, I decided to get organized. Here are some cochlear implant / travel hacks that worked for us:

1. I used a labeler to tag every cable and charger. Tedious, to do, I know, but it really helped. Now I can easily identify which cable goes with which charger and which device.

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2. I used a Grid-IT to store the equipment. For most of the equipment that involved cables and chargers, the Grid-IT was a great tool. You simply insert each device or cord in the elastic woven bands, which hold them snuggly in place. It fit into Yan’s briefcase perfectly, and I even had room for a Kindle in the back zippered pocket. It was a perfect travel solution.

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3. We bought Sonya a BedBox.  A former aircraft engineer and airline captain designed this piece of luggage that features an in-built bed. Sonya loved riding on top through the airport (especially during our 4+ hour layover in Zurich). Inside the suitcase we stored her books, iPad and toys, as well as the in-flight bed cushion. When at cruising altitude, you simply lift the lid of the box, flip it over and use the box to support the cushion which lays across the seat, creating a bed.

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An example of the bed when installed (not our kid)

It would have been amazing if Sonya had slept at all (she didn’t). But for kids who actually sleep while traveling, I think this is a cool thing. One note – it did not go through security well. We had to stop and have them investigate it. We probably looked a bit silly too traveling with it (Yan’s dad thought it was a portable toilet), but whatever.

4. We brought Yan’s parents again. We wouldn’t have gone this far without them. We alternated as to who would watch Sonya each day, so that we could each get away and do some sight seeing. Sonya learned so much Russian. She is mimicking many Russian words now. We loved spending time with them too.


As for a Sonya update, she is doing amazing. She is putting together seven to eight word sentences. Her articulation is becoming clearer. Her personality is booming and we couldn’t be prouder of all she has accomplished in just two years.

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How to Connect Cochlear Implant Processors (N6) to an iPhone or iPad

Continue reading “How to Connect Cochlear Implant Processors (N6) to an iPhone or iPad”

Three Weeks In and Five Observations

Five observations three weeks after Sonya’s cochlear implant activation.

Several weeks following Sonya’s initial activation and here are my thoughts:

1. Our experience has been very different from the many YouTube videos which portray the activation of a cochlear implant as some kind of miraculous event – in which one’s ability to hear can be turned on like a light switch. I have watched these videos over and over. They are so moving. I am not saying such videos are not authentic. But I do sometimes question the context. Was this truly the “first time” the person could hear? Or, was this the third or fourth mapping? In any case, our experience with Sonya was much less dramatic.

2. The real work is now. While Sonya may be hearing sounds, she doesn’t yet recognize them and is having trouble processing them. She must learn to listen for and identify every new sound – which requires intense therapy and practice at home. Interestingly, while Sonya used to be able to hear low register sounds with her powerful hearing aids, she now is reacting only to high register sounds (such as bells ringing or, the “sh” and “s” sounds). She will need to re-learn how to interpret and process low register sounds.

3. Sonya’s sleep schedule has changed. She is exhausted after her intense therapy sessions in the morning, and will often sleep 2-3 hours following. At night, however, after a day of stimulation, her brain may be having trouble shutting off – and she tosses and turns, unable to fall asleep. Apparently, this is very common for babies post-implantation. From what I understand, it typically takes about a month for babies to adjust to being able to hear.

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Sonya is exhausted after her daily speech therapy sessions.

4. I find myself questioning every movement she makes. Was it a normal developmental milestone or an issue that is developing post-surgery? For example, Sonya loves to sway her body back and forth. For several days we worried whether this adorable swaying might actually be a vestibular issue resulting from the surgery. Thankfully, we no longer believe it is the case – as it is clear that it is voluntary (she just loves to dance!)

5. Further to the above, there is a constant anxiety that I am not doing enough during the day to stimulate Sonya’s hearing. I try to emulate the games we play during therapy, but often Sonya’s responses are less noticeable. Am I speaking loudly enough? Am I using the right sounds? Am I doing this right?

Ending on a positive note – A recent coup was that we were able to adjust the size of the processors Sonya wears behind her ears. We attached the compact rechargeable battery rather than the full size battery. This allows Sonya to wear her implants without additional wires clipped to her shirt. Not only challenging for us to constantly adjust where the clips were placed, depending on whether she was sitting or lying down, Sonya can now move around much easier. Special thanks to my husband Yan and mother-in-law Lillian for pushing me to make that change!