Hearing Loss Hack: A Kid’s Fitness Tracker That Doubles As An Alarm

Sonya

For the past couple of months, I have struggled to get Sonya out of bed in the morning. We are perpetually late for school (despite the fact that we live four minutes away). I have been on the lookout for alarm clocks for kids that are hard of hearing, but I was disappointed by the bulky and not kid-friendly options that I found (I don’t know about you, but I wouldn’t want to put a vibrating disk that is attached by wire to an alarm clock under my kid’s pillow…)

Fast forward to today: Sonya wakes up on her own. She eats and leaves the table when it’s time to get dressed. Today we were so early to school the doors hadn’t even opened yet! For any parent out there that struggles to wake up their child (with or without hearing loss), this watch has been a game changer!

The Aupalla Kids Health Activity Tracker is similar to a Fitbit, but smaller and softer rubber for little wrists. You can program the vibrating alarms (we use multiple alarms to get her up and going in the morning) from your phone. The downside to the watch is the face, which in my opinion is a bit hard to tell the time, though Sonya has figured it out. Also, Sonya’s watch shows 24-hour time rather than 12-hour, but I guess we live in Europe now, so I should get used to it 🙂

I love that I can control the alarms from my phone. I have numerous alarms set up with different icons. Sonya can see that it is time to wake up, time to eat, time to get dressed, time to do her reading and even practice piano. It’s not an Apple Watch, but for a five-year-old kid, it’s really a great and inexpensive solution.

Just a cute, fun hack that has really worked, so I thought I’d share!

Some Big Changes

London calls

For the past six months (since my last post), a lot has happened.

First, I got pregnant! The second round of IVF worked! I am currently 31 weeks and so far everything is going well! As soon as Sonya learned about the baby, she told her teachers that her mommy was making her a baby. 🙂 Every night she talks to the baby and kisses it.

My lack of posting during this time, was partly due to the fact that I had a rough first trimester. I had to give myself progesterone shots in the rear every evening for 13 weeks. Sonya insisted on watching (she is my shadow after all…) and I’m pretty sure she thinks babies come from needles at this point. I don’t know if it was the pregnancy or progesterone (or both), but the morning sickness made it difficult to do very much at all. Thankfully, by my second trimester, everything settled down and I could resume my life.

Just as I was feeling better and my nesting instincts kicked in, we learned that Yan got a new job and we would be moving to London! As you can imagine, this was equally exciting and terrifying. Sonya was already accepted into a great school in NYC, which we were thrilled about. We had her speech therapists, ToD and reading classes in place. She was thriving. Obviously, making a decision to uproot your child at any point is not one anyone takes lightly.

On the other side of the equation was the amazing opportunity. Yan and I both spent quite a bit of time in Europe before we met (I studied in France and he lived in Amsterdam for two years post-college). The notion that we could so easily travel within Europe (and expose Sonya and her new sibling to new cultures, languages, etc.) was thrilling. It was something we had always wanted to do. We know these opportunities are rare.

So, today, I write to you from our new (temporary) home in Kensington, London. We plan to move to a permanent flat in mid-May.

Given the life changes, I think this blog will be somewhat redirected. While Sonya has thrived in speech therapy in New York City, we are learning that services here are not the same. My subsequent posts will be about the obstacles we faced and continue to face as we maneuver a new system, which has its own pros and cons compared to what we were used to.

If anyone reading this is in Central London, do let me know! Would love to hear your experiences raising kids with hearing loss in this new and beautiful city we are so excited to call home.

xx

Missy

 

So I Was Wrong. The Aqua+ IS Important and We Should Have Been Using It….

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I recently wrote about the fact that Sonya never needed the Aqua+ accessory (which make her processors waterproof). Summer sprinklers and the occasional dip in the pool never had an effect on Sonya’s processors (and if it did, I just popped them in the Zephyr dryer overnight).

Some readers were baffled by my seeming lack of concern about damaging the processors. The thing is, I just don’t like the Aqua+ silicone sleeves. They are bulky and way too large for Sonya’s little ears. My thinking was that her enjoying water activities (and its sounds) outweighed the risk of damaging equipment (which was still under warranty). However, now that she is swimming every weekend, we have learned the hard way that she really does need this accessory.

After her first swim class (which is definitely more water-intense than just splashing in the pool with friends), one of the CIs stopped working. I placed it in the Zephyr. Still nothing. I restarted the device, which worked temporarily, but then failed again. Ultimately, we had to replace the processors.

So yeah, I admit I was wrong. Clearly it’s important to put the processors in the sleeves, but the question remains: how do we keep the sleeved processors (now heavier and larger) on little Sonya’s head while she swims?

While I love the RubyBands swim headband for its look and for light water use, it stretched when drenched with water and then didn’t stay on Sonya’s head well. So I purchased the Headbands for Sophia Swim Headbands for Aqua+. This is a perfect option. Made of neoprene fabric (also used for wet suits) the headband is sturdy yet flexible. The loops are larger, so they fit the processors fitted with the Aqua+ sleeves perfectly/snugly.

While we have the headband situation fixed, I am now looking for a swim cap that will will 1. keep Sonya’s hair relatively dry as we head into the winter months; and 2. That will also not be too tight so that it is possible to fit on her head over the devices/headband. It can be so frustrating getting this gear on our squirmy kids’ heads, really… Currently, Sonya is using her old swim cap from the JCC Manhattan, which keeps everything in place, but does little to keep her head dry. I purchased the TYR Wrinkle Free Junior Silicone Swim Cap, but not sure if it will do the trick (it arrives later this week). Please do let me know if you have a solution that has worked with your kiddos!

Just keep swimming!

A New Community That Exists Between the Hearing and the Deaf

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Recently, an opinion piece in the Washington Post written by Juliet Corwin, a middle schooler (how crazy smart is this kid, by the way…?) raised an interesting issue. Juliet writes that while she was born profoundly deaf, with the help of cochlear implants she can hear and speak. That said, Juliet still regards herself as a deaf person. “I’m still quite different from people who hear naturally,” she writes. Despite this, she feels rejected by the Deaf community. “In the view of many who are integrated into the hearing world through technology, such as hearing aids or cochlear implants, myself included, are regarded as ‘not Deaf enough’ to be part of the community.”

“There is a color between yellow and green that no one can agree on: I think of cochlear implants — hearing but deaf all the same,” she writes.

The line seems to be drawn. Either Juliet can be a part of the hearing/speaking world, or she can be part of the Deaf community. Only two options seem to be available.

While I certainly empathize with Juliet’s situation (and have feared the same fate for Sonya in the past), I can’t help but wonder whether Juliet or her parents had sought out a new and equally wonderful community: the Oral Deaf Community? This is a community of people who are deaf, who use hearing technology to hear. Juliet doesn’t mention it. I wonder if there was a reason why they didn’t or couldn’t access it?

Now, I recognize we are privileged to live in New York City, which is at the forefront of hearing loss research and speech therapy. We are very fortunate to have found the Center for Hearing and Communication, which focuses on teaching children like Sonya, how to hear, listen and speak with technology. At the CHC, Sonya attends group speech therapy sessions once a week, which emphasize language interactions with kids and importantly help Sonya develop friendships with kids who also use technology to hear.

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Sonya at CampedUP

While Sonya attends mainstream preschool; does ballet and yoga with her hearing friends; she also attends attends CampedUP, a summer program for cochlear implant and hearing aid users. CampedUP further cultivates the Oral Deaf Community. It allows children like Sonya a place to socialize with other hearing aid and cochlear implant users of different ages, to gain self advocacy skills and of course to have a wonderful time, it’s summer camp above all!

The Oral Deaf Community is a strong and growing community. It is a community where Sonya can ask questions about and learn to take ownership over her devices. Where Sonya can feel proud of her uniqueness. Above all, this is a community where Sonya can see (and hear) that she is not alone.

Parents: do you have such communities where you live? Do you find them useful? Do your children? I would love to know more (and provide more information to parents who are reading this who aren’t New Yorkers!)

 

 

Should Your Child Wear the Aqua+ with CIs When Playing in the Water?

Summer is at its peak. Soon Sonya will spend her days at the amazing CampedUp in Manhattan, where the second half of the day, weather depending, often involves water games. When not at camp, Sonya loves to play in the many wonderful New York City playgrounds, many of which involve fountains.

While we tried to get Sonya to wear the Aqua+ sleeves when she was a baby, we found the silicone covers to be too bulky and uncomfortable. She simply won’t wear them.

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Sonya wearing the bulky Aqua+ covers when she was a baby

Our choice was either to have Sonya be without sound or allow her to keep her CIs on without the added protection and take the risk of damaging them.

The good news is, three years later, we have consistently exposed Sonya’s Nucleus 6 devices to water, and have had no issues. If the devices drop in the tub, or get significantly wet, we simply put them in the Zephyr dryer overnight.

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At a Cochlear “Back to School” event in New York City, the question of whether it was necessary to wear the Aqua+ was raised to a Cochlear employee who interestingly shared our sentiments. She discussed the fact that the Nucleus 6 processors are incredibly water resistant and  The Nucleus 7 are even more so.

According to this Cochlear employee, the Aqua+ is only necessary if the child is swimming laps, or has prolonged exposure to water. Simply playing water games, splashing in the pool or even taking a bath or shower is unlikely to affect the processors.

The bottom line is that ensuring that your child hears the many beautiful sounds of water in all of its forms far outweighs the risk of damaging the processors, which is unlikely anyways (and should be covered under the five year warranty).

So in Sonya’s words (a la Paw Patrol…) Ready Set Get Wet!

P.s. Sonya loves wearing her waterproof Rubyband headband when at the pool. You can find them here. You can also purchase swim headbands which fit the Aqua+ from Headbands for Sophia, another cochlear implant headband brand we love.

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Sonya wearing the Rubyband waterproof headband found here on Etsy

Some Thoughts As We Start Another Round of IVF

A year ago, I wrote a post about IVF. We had gone through a failed round and I wanted to share our experience. At the time, I thought I could just jump back on that wagon and try again. Unfortunately, life didn’t work out that way.

One thing that stuck with me post-IVF was a disconnect with my body that I had never experienced before. The bloating I experienced after the egg-retrieval, coupled with hormones that made my appetite crazy (not to mention my mood), culminated in a body that I didn’t recognize. I was furious. Not only did we not get any embryos, we spent thousands of dollars, and worse, I was back to a body I had worked so hard to change after Sonya was born.

Every morning, I would push Sonya to school in her stroller. A 20 block hike down West End Avenue. Half of which is uphill. I would think about food. After drop-off, I would go to a yoga or pilates class. Drink loads of coffee (to quell the appetite), and then pick Sonya back up and walk her home. By 2 p.m., I was literally starving. I remember crying on that hike back up hill because I was so frustrated and tired and hungry. Sonya would be kicking in the stroller because she wanted to go to the park, or walk alongside me. I was so fixated on getting home so that I could eat, that I kept on pushing. Ignoring her requests.

I quickly lost the weight. I also lost my period and my desire for life. I lost precious time I could have used enjoying Sonya and Yan’s company.

Despite being born with hearing loss, Sonya hears just fine with her CIs. She is also extremely observant. “I will eat just one more cracker,” she would declare, her eyes fixated on me for approval. How devastating to hear this! But it also was a wake-up call.

My behavior was not serving anyone. Not myself, not Yan and certainly not Sonya.

Thank goodness, I have rebounded. I gained the weight back and I also regained my happiness. I started to listen to my body instead of the crazy and destructive voices that seemed to be real, but were in fact, just thoughts.

Sonya recently asked me why my belly was so big after eating dinner. “Do you have a baby in there, mama?” she asked.

“I have a food baby!” I told her, as brightly as I could. “And I am going to rub it and kiss it.” I kissed my fingers and rubbed my belly. “My food baby helps me be strong! It gives me energy so I can run and play with you!”

“Mama, I have a food baby too! See?” Sonya lifted her shirt to show me her little tummy. We rubbed and kissed our bellies together.

In the coming weeks, I will start another round of IVF. I think knowing how I react to this treatment will be helpful. I am also hopeful that this time, it works. In the meantime, I will continue to listen to and feed my body; observe the thoughts that fill my head; and be mindful of the words that come out of my mouth. It’s not just me who is hearing them.

xoxo

 

How To Talk To Your Child About Their Hearing Loss?

While driving back from an afternoon downtown at CHC where Sonya does individual speech therapy, reading/writing and group therapy; Sonya looked at me and asked, “Mom, why don’t you have CIs, but I do?”

I have long awaited this question. On one hand, I dreaded this moment because I  worried I wouldn’t answer it well. That I would be too emotional. That Sonya would be left confused or feel isolated.

But I looked forward to it too. Sonya, now three-and-a-half, is becoming increasingly self-aware. She wants to wear her hair a certain way, and is becoming more vocal about what she will and won’t put on her body each morning. Sonya now online shops with me! Lately, she has informed me that purple is no longer her favorite color. “Just pink, mommy!” (And she knows how much I hate that color 🙂

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Sonya’s street style (note: Peppa Pig hair bands which can also double as bracelets)

“When you were born…” I began, “you couldn’t hear. Your ears weren’t working. That’s why you have CIs. They help you to hear! When I was born, my ears worked fine, so I didn’t need to get CIs.”

I paused as I awaited Sonya’s reaction. She simply shrugged her shoulders, and said “Oh yeah. That makes sense.”

I sighed with relief. But I realize, of course, this is only the beginning of this conversation.

For this reason, I am so grateful that we have such a strong network of families with children who also have hearing loss. Each week, Sonya gets to spend an hour with her friends at group speech therapy. She loves these children (as do we) and looks forward to seeing them. We also do playdates with their families. I always thought it was sweet that she enjoyed their company so much, but now am beginning to realize the critical importance of maintaining these friendships. These children are about Sonya’s age. They also wear hearing devices. As Sonya becomes more self-aware, she will recognize that while she may be the only child in her mainstream classroom with CIs, she is not alone.

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Sonya’s Group Therapy at CHC last Halloween!

CampedUP, a summer camp for children with hearing aids and cochlear implants, is another opportunity for Sonya to connect with other children with hearing loss. We are so looking forward to another summer at this wonderful camp. Last summer, Sonya (at just two years) started putting her processors and coils back on her head by herself after this camp. This year she will meet even more children from all backgrounds. I especially love the fact that the camp is of mixed ages. Older children mentor the younger ones. Sonya is no longer the youngest and will have younger children looking up to her, too!

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Sonya at CampedUP last summer

Additionally, I am so grateful for our friends (those of children with hearing loss and without). For parents out there reading this with young infants, I urge you to find other parents to connect to. Whether it be me (happy to respond to emails or hop on a call!) or someone closer to you, the value of having these relationships is just so important.

Has your child asked about their hearing loss? How did you respond? As we are early in our journey, I would love to hear more ways to talk about this with our kids and I am sure other readers would agree!

 

 

What it’s Like to be a Twenty-Something with CIs

I stumbled across Becca VonLangen’s blog, Hear Our Silence, while searching for hearing loss-related Instagram accounts (she has a great one). Becca (like my daughter) was born profoundly deaf. She relied on hearing aids until she was eight-years-old when she received her first cochlear implant. At 17, she was implanted on the other side. Today, she is 26 years old. I was interested in hearing about how hearing loss has or hasn’t shaped her identity at this stage in her life.

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Does anyone else in your family have hearing loss? How did your parents approach your hearing loss?

No one in my family has hearing loss. I was lucky in the way of having the love and support from my parents and my brother. Importantly, they did not treat me differently. My parents enrolled me in a preschool for the deaf as a toddler, which is where I learned how to talk. When I got my hearing aids, my parents would talk to me about everything, from the weather to putting away dishes. As I got older, my parents gave me more control over my hearing. They allowed me to take ownership over my implants and my classroom needs. They also taught me the importance of self-advocating.

Did you do speech therapy growing up? If so, for how long?

I went to a preschool for the deaf that focused on oral education. At six, I started mainstream kindergarten. Throughout elementary school, I worked with a special education teacher, but I hated being pulled from my classes so I stopped going without permission from anyone. In middle school, I met with an itinerant teacher before school started each day until seventh grade. I should add that I received more intense speech therapy following the activation of each of my cochlear implants. When I was eight-years-old, I worked with a professional speech therapist, and at 17 I worked with my mom (who had experience as a teacher’s assistant at my preschool).

I attended SUNY Oneonta for college, where I graduated with a major in anthropology and a minor in Earth science.

Do you think you hear differently from friends or family? If so, how?

I definitely do. I notice my friends and family can hear different pitches than I can and can pick up sounds from a distance easier. I do have an advantage with my telecoil mode, however! Using it blocks outside noise on the phone, which is great when I am at work. I end up handling the most office phone calls since I can hear people the easiest on the phone.

What was college and dorm-life like for you?

It wasn’t as tricky as I thought it would be. I let everyone on my floor know I was deaf and they helped me out during fire alarms, especially if I was in the shower when an alarm went off (which happened!).

Did you take advantage of any hearing-loss related accommodations while in college? What helped you be successful?

I used a few accommodations in college. The first floor of the dorms were equipped with strobe light fire alarms so I was able to request those rooms for housing. That made moving in and out a lot easier! For certain classes, I took advantage of having a note taker. I used a note taker for a physics class that had a professor with a thick accent; for a literature class where the professor spoke very quickly; and for a history class which was pure lecture – no power point. Reflecting back, I do wish I had utilized them a bit more for certain classes where I struggled, but wouldn’t admit to it.

I also found open communication with my professors to be helpful. I kept in touch with professors throughout the semester and let them know if I felt I I was falling behind. I had a very rough sophomore year and learned how to advocate better my junior year, which helped me so much. I kept in better contact with my professors and in return I felt I knew the material better and my professors were willing to work with me because they knew I was trying.

What kind of work do you do currently?

I work as a veterinary technician in an emergency and referral hospital, mostly focusing on the dentistry and oral surgery department. I started off as a receptionist for that department and now I have been cross-trained as a technician in multiple departments to help out where needed. When in the dentistry department, I perform dental cleanings, radiographs of the mouth, some minor non-invasive procedures and I help the veterinarian with root canals, braces (to correct a painful mouth, not for cosmetic reasons) and even metal crowns for police canines!

Additionally, I help out at Summit Speech School, a preschool for the deaf, that teaches kids how to speak and hear (the same preschool I went to). Parents with young infants often approach me, hoping to know that their child is going to not just be okay with hearing, but also okay socially. I do think that their concerns have some merit. It’s hard to be different in today’s society and being deaf is something different. I have found that as long as you are proud of your hearing loss and don’t let it prevent you from doing what you want, the challenges are like any other kid growing up.

Have you faced any challenges socially?

I noticed social challenges when I went to college. I grew up in North New Jersey with the same friends who all knew how to adjust in social settings with me, but in college I had to train myself how to get around with strangers. Once I established a core group of friends, things got easier. House parties and bars were probably the toughest challenge due to the dark lighting and loud music. I stuck close with the people I went with for the most part. There was a bar in college I went to every time I went out and developed friendships with the bar and bouncer staff, so I felt more comfortable in that environment.

I am sure people did treat me differently more often than I realize, but I try to focus on the people that treat me the same. There are trends of what people do when they start to treat me differently. Sometimes people over exaggerate their lip movements, which actually makes it harder to understand. I’ve had people say “never mind” when I ask them to repeat themselves, which hurts. I deal with it by letting people know that what they are doing doesn’t help. I find that calling people out helps them to not only help me, but also furthers their awareness. Most people don’t realize what they are doing and apologize.

It’s clear from your blog and Instagram that you love to be active. Can you talk a bit about how you handle sports with CIs?

I grew up playing soccer in a travel league. At that time, I noticed I played best on the side closest to the coach, since I could hear him better there. I learned how to play using both of my feet instead of favoring one side like most players, which gave me an advantage. I also did ballet, jazz, hip hop, contemporary and modern dance most of my life (on top of color guard in high school), and I had to wear “huggies” to keep my CIs on my ears. I learned how to style my hair to keep magnets on my head, too (braids work best!)

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What was it like to date with CIs?

Dating was normal for me. I didn’t think hard about relationships because everyone had different experiences and challenges, and my hearing loss was just another factor. My first real boyfriend was during my sophomore year of high school. I remember being shy about watching TV and movies with subtitles, so my mom mentioned it to his mom. The next time I went over, they had closed captions on the family TV. He asked me why I didn’t say something before and I couldn’t come up with a clear answer.

I noticed a pattern with relationships that followed. I would wait to bring up my deafness. I tried to do it in the most natural way possible, but it didn’t really work. For example, I met one boyfriend on vacation and told him I was deaf while we were swimming in the ocean! That’s not the best place to break that type of news!

Since then, I have been sure to be upfront about my deafness. I met my husband in line at Starbucks and my hearing loss came up in that first conversation, which made it easy! My husband is also the most interested in my hearing than anyone else I ever dated. He comes to audiologist appointments with me, he learned ASL and he learned how to care for and troubleshoot my CIs.

Ahhh…that is so romantic! 🙂 Do you sign?

I do not sign on a regular basis. I would like to, and I took classes in college. It is hard since no one around me signs, so I don’t get much opportunity to practice. My husband and I are learning together. He even surprised me during my wedding ceremony by signing our vows!

Okay. Love him! So why did you decide to start your blog, hearoursilence.weebly.com?

I noticed there was a lack of community with the young adult cochlear implant/hearing aid crowd. There were blogs out there for parents of deaf children and for older adults, but not many for young adults. I started to search social media for other sources and continued to find nothing. That was 2014. Today, the community has grown with other deaf activists my age. You can find them on Instagram, Twitter, etc., but the blogging world still holds a place in my heart.

Thank you, Becca! So grateful to you for sharing your experience! 

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!

Sports and Cochlear Implants: One Swimmer’s Story

When Sonya received cochlear implants, one of the first challenges we faced – before learning to listen or speak was simply – how to keep them on her head. At 3, Sonya is not yet into sports, but whether her devices will prohibit her from participating in such activities in the future is a question I have wondered and have heard from other parents of kids like Sonya.

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Through Facebook, I connected with Summer Harrison, a mom to four kids, two of whom have hearing loss. Her oldest daughter, Paisley, received hearing aids at one year of age, and was implanted with cochlear implants on one ear when she was three years old, and on the second at three and-a-half.

Today, Paisley is seven-years-old. She is a competitive swimmer. Summer recently posted the below video to her Facebook page of Paisely diving into a pool during a swim meet, and mentioned how Paisley’s coach talks to her using a Mini Mic. I just had to hear more:

Can you tell us a bit about Paisley’s hearing loss? How did you learn of it?

Paisley is the oldest of four children and has a twin sister Presley. Born at 34 weeks, the girls spent two weeks in the NICU. While Paisley failed her newborn hearing screen, she was not officially diagnosed until she was ten months of age. She received her hearing aids when she was a year old. Because of my background as a Deaf Education teacher and certified interpreter, I felt it important that Paisley have access to both sign and spoken language. The hearing aids were wonderful for the first couple of years. Paisley’s spoken language skills quickly took off with the additional amplification, but at two and-a-half, we noticed that she was behaving in ways that weren’t typical for her. Her spoken language skills began to plateau and she started to increase sensory seeking behaviors and meltdowns. During this time, I also noticed Paisley become more dependent on sign language to communicate. Audiologists and speech therapists confirmed that she needed cochlear implants.

Paisley received her first cochlear implant at 3 years and 2 months, and her second five months later. While we continued to use sign language after activation, Paisley soon told me to stop signing because in her words, “she didn’t need it.” Paisley still knows some sign, but prefers to listen and speak.

How did Paisley get into swimming?

My parents have a pool and Paisley has always loved the water. She would stay in until we made her get out. After watching the 2016 summer Olympics, she became interested in competitive swimming. This past summer, Paisley had a few lessons with a woman who coaches competitive swimming and then Paisley tried out for a local team.

Which device does Paisley have? Does she use additional equipment?

Paisley wears the Cochlear Nucleus 6 sound processor. She wears the Nucleus Aqua+ for swimming which is a silicone case that her processors slide into in order to make it waterproof. It comes with special coils that are made for swimming. It also has a fishing line type cable that I clip to her swimsuit in case it falls off while swimming.

How does Paisley’s coach handle her hearing loss? Is it an issue?

It is sometimes difficult for Paisley to hear when she’s in the water because it is loud in the pool are and because the Aqua+ and her swim cap muffle the sounds a bit. Paisley’s coach has been very patient and wonderful. She wears Cochlear’s Mini Mic 2+ when she isn’t in the water with the kids, and when she is in the water, she makes sure that Paisley is able to see her and understand what she says. Her coach even learned some sign to help give Paisley instructions during swim practice. Our audiologist set up a special program for Paisley that helps her hear a little better when in the pool as well.

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Presley and Paisley

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The whole crew. From left to right: Paisley (7), Pierson (2), Patton (3) and Presley (7).

How does Paisley keep her coils on her head while swimming?

Her coils stay on well since she wears a swim cap, but for race days, I usually braid them into her hair to help them stay on better. On practice days, I usually just tuck them under her hair and pull her hair into a pony tail.

What precautions do you take to protect her implants?

When Paisley swims, we always make sure that her implants are secure in the Aqua+ and that the retention cable is clipped to her swimsuit. After she is finished swimming, all pieces of the Aqua+ and her processors go into a drying box to make sure there is no moisture left.

zephyr
Paisley uses a drying box like the Zephyr to ensure water doesn’t affect her processors

Have you ever damaged equipment during a swim event?

The only issue we have had so far is that once Paisley didn’t get her Aqua+ case closed all the way and water got inside with the processor. Her coach helped her get the water out and seal it better so that it didn’t happen again. The devices never stopped working, however. When we got home, I put the wet processor in the drying box to get rid of any excess moisture. After this incident, I help Paisley make sure her Aqua+ cases are closed properly before she heads into practice.

Has swimming helped Paisley with her language?

Swimming helped Paisley develop better social skills. She is learning specialized language she never would have been exposed to had it not been for swimming. She is learning to follow directions well, and has made great friends. Paisley is learning what it means to compete and accept that you don’t always win. Knowing she has to practice hard to improve her skills is a valuable lesson. While Paisley always gets nervous before a race, I am thrilled with how much she enjoys it.

If you could tell a new parent to a child born with hearing loss one thing about their kid’s future, what would it be?

You will learn things about yourself and your child on this journey that will amaze you every day. I think it’s important to connect with other parents so that you can share your grief and your victories. It’s a unique journey and it helps to surround yourself with others who understand what you are going through.

Go Paisley Go!!! Thank you Summer and Paisley for sharing your story!

P.s. You can read more about Paisely and her incredible family on Cochlear Americas website here.

 

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