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!)

 

 

The 10 Best (and 3 Worst) Places to Visit in Paris with a Toddler

Last week, we returned from Paris. We were there earlier in the Spring, but because Yan had to be in Europe for work, we were very fortunate and got to go back! This time, we brought my sister and Yan’s parents!

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Sonya’s Aunt Jess (My lovely sister 🙂 came with us this time. Such a treat!

Traveling to Europe with a toddler is not easy. Traveling with a toddler who has cochlear implants is an additional challenge. Sonya often takes off her CIs when tired or when it’s just too noisy, so I wear her Roger Phonak whenever we travel. It makes it easier for Sonya to hear me above the background noise of the airport. It also doubles as a way for Sonya to watch videos on the airplane (either the screen attached to her seat or her iPad). We simply bring a double-headed headphone jack (see photo below); plug one end into the Roger and other end into the headphone slot. Note – I think the N7 bypasses the need for this – and a child using the N7s would be able to listen to their iPad directly without a third piece of equipment, but we still have the N6s…)

 

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Double-headed headphone jack we use so Sonya can watch videos with her N6 processors

You can also use the Cochlear Mini Mic 2+ instead of the Roger. It’s less costly for sure if you use it. I discuss how to sync the N6 CIs to the iPhone / iPad here by using the MiniMic. (Again dismiss this if you are lucky and have newer equipment!)

At the airport, we walk around as much as possible. Sonya loves to ride on her JetKids Bed Box aka “pony”.

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Our flight out was delayed a couple hours, so we spent some time at the XpresSpa (which was super kind and didn’t even charge us for letting Sonya sit on a massage chair for 30 minutes!)

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When we finally arrived in Paris, it was amazing to notice how Sonya picked up on all of the different sounds of this city. From the water splashing in the Seine, to the ambulance and police sirens, to the musicians in the street.

Here is a list of our top ten favorite places to visit in Paris with a three-year-old!

The Louvre: You can skip the lines if you bring your child in a stroller. Massive time saver. We devoted an hour to art and an hour to eating at the food court. Next time, I think I’ll pack her a snack and we can find food elsewhere. The food that we found at the Louvre was pretty meh.

Sonya had a brief tantrum in the cafeteria. I love the below photo. Look at her clenched up fists! It’s cute after the fact, right? 🙂 So yeah, traveling with kids is not easy. Once fed, Sonya was a much happier camper 🙂

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Musée d’Orsay: Situated in an old train station, Musée d’Orsay is home to many important impressionist works. The fifth floor is where everyone goes (there is a lovely view and a great cafe there) But don’t miss Manet’s Olympia on the first floor.

Musée de l’Orangerie: Houses one of Paris’ most loved treasures: Monet’s water lilies. The museum is small and accessible. Loved taking Sonya here.

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Skipping through Musée de l’Orangerie

Deyrolles: We visited last time we were here in April, but we can’t get enough! Not for the faint of heart (as it has a huge taxidermy collection), but Deyrolles is one of the most beautiful and interesting stores I have ever seen. Sonya loved it too. This time, we spent a lot of time in the butterfly/insect area picking out butterflies for Sonya’s Poppy (my dad, who used to collect butterflies as a kid). Each drawer holds hundreds of bugs, butterflies, moths, etc. It’s truly a magical place.

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Sonya’s butterfly creation – a gift for her Poppy
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Studying les Insectes de France

Giverny: Taking the train out of Gare Saint Lazare (which is a beautiful place to visit in itself) was an exciting adventure! Sonya loved seeing the trains and looking out the window. The SNCF trains are clean, on-time and quiet! Basically the opposite of any experience taking a train in NYC. Once we arrived to Vernon, we took a shuttle to Giverny, where Monet’s garden is located. It was packed full of tourists, but still, breathtaking and lovely. We toured the garden and house (it only took an hour or so) and then walked in the small town for lunch. Such a lovely day trip! Sonya picked out a few beautiful picture books in the gift shop (that you can also find on Amazon). See here, here and here.

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If only traveling by train in NYC was like this….

Le Jardin de Luxembourg: When I studied in France (a thousand years ago), I always imagined having a daughter and letting her play here. This is by far my most favorite place in Paris. Situated in the sixth, the garden is quite extensive. There is a large pond for sailing toy boats, an apple orchard, a bee-keeping area and greenhouses. Statues spread around the park are incredible. The garden hosts tons of activities for kids including puppet shows, a playground, a carousel (that is the oldest in Europe!) and pony rides. We loved relaxing by the fountains or going to one of the restaurants in the park (which are great!).

Musée Rodin: Again – you can skip the line with a stroller. Musée Rodin is a small and wonderful museum with a beautiful outdoor garden full of his most famous works. A great cafe is located in the garden. We spent an afternoon here in the spring and a morning here during this summer trip.

Le Jardin des Plantes: I would be remiss if I didn’t include this great museum and zoo. It’s like the American Museum of Natural History in New York, except the animals are much closer and not behind glass.

Saint Chapelle: Truly a gem to behold. Both Yan and my sister weren’t sure about making this stop (there is a line – and you DO skip it with a stroller 😉 but once inside, they were amazed. The stain glass windows are breathtaking. Sonya loved the colors (despite her being a three-year-old moment).

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Photo: Getty Images

Batobus: In Paris, we walk even more than in NYC. It’s crazy. The Batobus is a great way to rest your feet and still see all of the sights. There are eight stops along the Seine and you can buy tickets at each stop or online. You can get off and on at any of the stops. The boat comes every 20 minutes or so. We bought a one-day pass, but I would recommend a two-day pass so you don’t have to rush and can take full advantage.

And here is the list of places we went to, that maybe we shouldn’t have with Sonya…

Versailles: Absolutely a must-see. Just maybe not with a toddler. They do not permit strollers in the palace (understandably). The gardens are incredible but without much shade in the hot summer. So we were left to carry Sonya who was in the heat, and it was a bit much…

Fondation Louis Vuitton: A striking piece of Frank Gehry architecture in the middle of the Bois de Boulogne, Fondation Louis Vuitton is a center for modern and contemporary art. Some of it was a bit out there for Sonya (e.g. a once-live horse hanging from the ceiling – and Sonya noticed a tear running down its eye…), but we loved it. I would definitely come back here for another visit sans Sonya.

Musée Saint Laurent: A must-see for any fashion lover (over three years old). Sonya wanted to touch the beautiful clothing (who can blame her?!), which apparently isn’t okay. Really a gorgeous and interesting place to see into the home and collection of Yves Saint Laurent.

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Mother-daughter fashion 🙂

 

Overall, we had the best time and wish we could have been there to see France win La Coupe du Monde! Allez les bleus!

 

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

 

A Spring Paris Trip

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A few weeks ago, our family went to Paris. Traveling with a toddler can be…interesting, but this trip was actually wonderful! Sonya handled the six hour flight to Paris and eight hour flight home like a trooper. Here were some highlights of our trip!

To prepare for our trip, we read lots of books about Paris so that Sonya would have some understanding of the city. Her favorite book was Eloise in Paris. It’s long, but it does cover a lot of ground.

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We rented an apartment in the sixth arrondissement through Paris For Rent. This was a great alternative to Airbnb as the apartments are actively managed and a team of travel advisors were available as soon as we arrived. From picking us up at the airport to settling us into the apartment to ensuring everything was clean and working. We loved our apartment. Our windows overlooked Rue Bonaparte, just blocks away from where I spent a semester abroad in college.

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Every morning, I woke up early to get fresh croissants from a local boulangerie (which I had also frequented more than 15 years ago in college!) It’s amazing how stores and restaurants in Paris seem to weather the passage of time. Unlike New York, where the moment you discover a place you love, a For Rent sign is soon plastered to the door.

Sonya had voiced concerns about the food she would eat before we arrived. She is a picky eater (yes, I know I am not supposed to use that term…but) sticking to fresh berries, cheese, challah (from Zabars, of course) and pasta with ricotta, honey and cinnamon. She was delighted to learn that all of these foods (brioche is a good challah substitute!) were readily available for her in Paris. We purchased our groceries at Marche St. Germain, just minutes from our apartment.

Given the cold weather upon arrival, we took advantage of the many museums. An important note. If you bring a stroller to any museum in Paris, you skip the line! I felt so powerful! We bought the six-day museum pass, which was also a way out of ticket lines. Sonya loved Musee d’Orsay, as well as Le Musee Rodin, and Le Louvre, where we fought crowds to see the Mona Lisa.

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Sonya loved this image of Minerva (also the name of one of her school friends!):

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Ultimately (and unsurprisingly) Sonya was most impressed with the gift shop. We bought an art book, which is great. We also gave in to Sonya’s demands and bought her a stuffed pony she named Giddy-Up. My philosophy is when you are traveling with a toddler, it’s ok to give into tantrums 78 percent of the time to avoid a scene. It’s also hard to argue with this face.

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Le Jardin des Plantes was another great spot. But our favorite “museum” turned out to be a store! Deyrolle Taxidermy is a great place to visit with kids. Exotic taxidermy, entomology, and natural history specimens are displayed in antique wooden cases and glass bell jars. Sonya loved seeing the animals up close.

And our favorite food?: Aux Merveilleux de Fred in The Marais (or if you live in NYC, there is a location in the West Village!! who knew?!?) Eat the white chocolate meringue.

Toward the end of our stay, Spring arrived, and we were lucky to spend a day with some friends who showed us the roof of their amazing apartment in the sixth.

We spent that day in Luxembourg Gardens, my favorite place in Paris. Sonya rode the Carousel and tried to capture the brass rings on her sword. It is the oldest carousel in Paris, dating back to 1879. I could seriously watch the below video all day…

Throughout our stay, Sonya colored and did activities in Go! (Red): My Adventure Journal. Truly a fantastic travel companion!

All in all, it was a wonderful trip. Also – no hearing-related incidents! (Though Sonya did develop an ear infection upon our return..more on that later). The best part is we are planning to return this summer!

Paris, je t’aime. xoxo.

Do you have any go-to spots in Paris we shouldn’t miss when we return? 

P.S. Check out Cochlear Implant Travel Hacks and Our first trip to Italy with Sonya.

 

A Comedy Night Jokester

We are so excited for this year’s Comedy Night fundraiser, which benefits the Center for Hearing and Communication! To celebrate the 32nd year of classic New York comedy accessible to people of all hearing abilities, enjoy this video of Sonya telling her first joke! 🙂

Does your child have a funny joke to share? Submit your own video here (and donate to a very worthy cause that is close to my heart).

 

 

 

 

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!

 

 

Check out the Present and Future of Hearing Loss Research

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Recently, Yan and I had the opportunity to visit the Stanford Initiative to Cure Hearing Loss (SICHL). Not only did we get to tour the research facilities, but we sat down with several world-renowned researchers who are on the cutting edge of curing hearing loss.

Basically, SICHL’s goal is to create treatments that repair the damaged inner ear and restore lost hearing, quiet tinnitus and improve balance. Stanford believes that hearing loss can be corrected and avoided. I strongly encourage other parents to follow their research and blog!

In particular, take a look at the following posts. These will help you to understand what the key areas of hearing loss-related research that Stanford is investing in currently, and what their goals are for the next five years:

Grillet Lab: Nicolas Grillet, PhD is focusing on a gene called Loxhd1, which is responsible for a non-syndromic form (i.e. no other symptoms) of hearing loss. His team is using mouse models to study the effects of different mutations in this gene.

Oghalai Lab: John S. Oghalai, MD has been studying how sound vibrates the hair cells within the cochlea, and how the loss of some of the hair cells affects the ability of the rest of the hair cells to work. Dr. Oghalai’s work will help to develop more effective treatments for patients with hearing loss and better hearing aid and cochlear implant programming algorithms. Notably, they have developed a way to image the cochlea in animals in a non-invasive way. They are hoping to do the same for human patients so that we can learn exactly why an individual has hearing loss!

Cheng Lab: Alan Cheng, MD lab has made major discoveries in the areas of cell regeneration. His lab has established one of the first models of mammalian cochlear hair cell regeneration (which before his lab was understood not to regenerate in mammals). His lab studies several models of mammalian hair cell regeneration and also has the ability to determine whether regenerated hair cells function as normal hair cells.

Dr. Cheng’s lab has also focused on ways to prevent certain types of antibiotics known as aminoglycosides from causing hearing loss. They are working to create non-toxic antibiotics in the next five years.

This is just a sample of the areas of research happening at Stanford. You can learn more about their ongoing investigations and goals here.

Do you follow any research you would like me to include here? Please let me know in the comments section!

 

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! 

Hear in the Big Apple! A Summer Program for Children with Hearing Loss

Are you looking for a summer vacation that is equally enriching as it is fun? CHC and CampedUp have teamed together to create a summer program for kids ages 3-10 with hearing loss in NYC! This is such a cool opportunity for families outside of NYC (and even outside of the US) to take advantage of!

Not only will you and your kids get an opportunity to work with (i.m.h.o.) the best of the best when it comes to speech therapists and hearing education specialists, but if it’s anything like CampedUP, the kids are gonna have a blast, too.

More details below:

Hear-in-the-Big-Apple

Contact Dana Selznick at dselznick@chchearing.org or +1 917-305-7855 for more details.

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