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
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