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.
Are your kids having a great camp experience this summer? This year, Sonya returned to CampedUP, a summer program for kids of all ages (and their hearing siblings) who have cochlear implants and hearing aids. Founded by teachers of the deaf, CampedUP ensures that all kids have a great day camp experience in a listener-friendly environment.
Here are some highlights…
The first week of camp, Sonya enjoyed a hands-on reptile show! A wildlife educator introduced these city campers to all kinds of reptiles including turtles, frogs and even a yellow boa constrictor! I am still in shock that Sonya was so brave to wear this snake as a necklace!!
The next week didn’t disappoint. Sonya was thrilled to learn she would get to play with two “special guests” that week, who turned out to be none other than Disney Princess Sophia and Prince James! “The real ones, mommy, not pretend!” she told me. The Prince and Princess helped the kids decorate crowns and then they all enjoyed a royal ball!
Despite a rainy third week, the CampedUP counselors made sure the kids had plenty to do. Counselors dressed up as clowns and did face painting (in a cute, not scary way) 🙂
The kids played the Pie Face Game, and even made balloon animals. Stephen Wise, where the camp is held, has a great indoor playground where the campers could still burn off steam, despite the rain. When the sun finally came back, the campers spent the afternoons on the rooftop playground where they played water games and climbed the jungle gym.
For the last week of Camped UP, founders Dana Selznick and Brittney Prell had one more very special surprise in store. Marvel’s newest superheroes Blue Ear and Saphera visited the campers. These heroes have special hearing powers because of their cochlear implants. Dana told me that when Blue Ear and Saphera told the kids about their special hearing powers, the kids also shared their own powers, including: hearing Santa.
The superheroes truly connected with the kids. So amazing 🙂
That night, Sonya transformed into “Super Sonya!” Protector of her toys.
Above all, Sonya made such incredible friendships this year. We are so thankful for Dana, Brittney and their wonderful team of hearing education specialists and counselors who are creating such a strong Oral Deaf Community in New York City.
For Sonya’s upcoming birthday, instead of gifts, we ask that friends consider donating to this wonderful camp. Donations will go toward scholarships so that any child can attend CampedUP. Check it out, here:
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!
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…)
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”.
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!)
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 🙂
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.
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.
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.
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).
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.
Overall, we had the best time and wish we could have been there to see France win La Coupe du Monde! Allez les bleus!
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.
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.
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.
Sonya loved this image of Minerva (also the name of one of her school friends!):
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.
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…
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?
Happy New Year! How was your break? As in prior years, we spent the last couple of weeks in Palo Alto where we visited family and Sonya consumed massive amounts of Russian chocolate cheese or CbIPOK. Basically this is cheesecake covered in chocolate, but my Russian in-laws insist it’s very healthy.
Our first visit was to Stanford. Sonya took her Micro Mini and scooted around campus while Yan and I strolled around sipping coffee from the student lounge. The colors in Palo Alto this time of year are quite extraordinary. From late morning to late afternoon the sun hits at such an angle that the leaves on the trees sparkle and you feel just so thankful not to be in New York where the temperature was an ungodly four degrees Fahrenheit. 🙂
As in prior years, we stayed at Yan’s parents house in Midtown Palo Alto. Sonya was thrilled to help decorate their beautiful New Year’s tree.
And Yan dressed up as Ded Moroz, the Russian Father Frost. It was a frightening experience for all.
Good thing we had an amazing Russian meal (and Vodka) to help erase that memory…
A highlight of the gifts received this year was an easel from Ikea which has a chalkboard on one side and a white board on the other.
Above all, Sonya loved to draw portraits of our family (though I am not sure whether the below video should concern me or not)…
Since my brother, three sisters-in-law, two nephews and niece are also in the Bay Area, we spent some time with them too. It was so amazing to see Sonya and her cousin Zoe play together. They are just a few months apart in age, and yet I can tell are soul sisters. 🙂
Finally, we were able to spend a couple days in one of our favorite places in the world (where Yan and I also got married…) Calistoga! It was Sonya’s first visit and such a special time for us.
We decided to do the most touristy thing possible and take the tram up Sterling Vineyards. Sonya loved the ride and the food. It culminated in a wine/graham cracker tasting.
When we got back to Palo Alto, Sonya made a big speech leap! She is now articulating the “Z” sound so much more clearly (with some help).
As we left Sonya’s grandparent’s house for New York, Sonya sighed. “But I will miss Baba. I love her….also, chocolate cheese.”
Spending Thanksgiving in London wasn’t a decision I made lightly. After all, we typically host the dinner. It’s also my most favorite holiday and we live just blocks away from where the parade balloons are inflated – an incredible sight for any three year old. Denying Sonya the view of Chase from Paw Patrol being inflated to gigantic proportions made me feel a little bad, but given all London has to offer, I thought worth it. Yan had to be there for work a few days and then we could spend time with Sonya’s Aunt Emily who is currently studying abroad. Not to mention the many museums, shopping and landmarks. It seemed like a great plan.
Of course, as the saying goes, “man plans, God laughs.”
I remembered this saying as, days later, we took a black cab to Casualty First, a private urgent care center located at London’s St. John & St. Elizabeth Hospital. Sonya was crying and holding her right arm limply. She glared at me. “Mama you pulled me too hard!” she cried. And I cried too.
It’s funny because the day had started so well. We were planning to meet some friends at the Natural History museum in the morning, and I had let Sonya sleep in, so we decided to order room service for breakfast. Upon waking up, Sonya was thrilled to see a giant blueberry muffin await her. We were a bit jet lagged and I realized that the timing was tight to finish breakfast, get dressed, get a cab and make the 25 minute drive to the museum. And Sonya didn’t want to wear her CIs that morning.
As anyone who has traveled with a toddler (not to mention one who wears cochlear implants) knows, routine often must go out the window. Sometimes this is a good thing. I personally feel that too much structure for kids is not great. That having a day here and there where life is just not according to plan can actually be a great learning opportunity. But sometimes, it’s just too much. Sonya, who typically allows us to put her CIs on in the morning as she eats and watches Sarah and Duck, resisted more than normal this morning.
I tried to hold her down to put them on, but she struggled away. When she decided to slide her body off the bed to avoid wearing them, I took her arms and pulled her back up. The weight of her body was just too great on the ligament of her right elbow. I felt a click and she hollered in pain.
I quickly realized what had happened. Sonya held her arm loosely at her side and wouldn’t let me touch her.
Sonya had what is called “nursemaid’s elbow.” This is apparently a common childhood injury. It happens when a child’s elbow is pulled and partially dislocates. It’s obviously a painful injury but it’s also very easily treated.
At Casualty First (I can’t get over the name either…), Sonya and I waited in a bright, clean and empty waiting room for just 10 minutes before she was seen by a doctor. As she sat on my lap, the doctor examined her arm. No swelling or bruising – which was good. He simply took her hand turned it over and while distracting her bent her elbow toward her body.
Sonya screamed and cried. I held her tightly. “I didn’t feel it snap back in place,” the doctor told me. “I hate to do this, but I think she will need an X-ray, to ensure there was no fracture.” He sent us to wait in the hospital waiting room for what could have been hours. Sonya laid against me. I sang to her softly and then suddenly she sat up.
“Mama – it doesn’t hurt!” She smiled. “My arm is better!” Sonya moved her arm around in a circle and then sang with delight “the driver on the bus can move on back!” she exclaimed, smiling. The doctor soon confirmed that she was just fine. “These cases typically resolve themselves in 24 hours,” he assured me.
I can’t express the relief I felt. I also can’t express the guilt. I had really screwed up as a parent.
As we walked out of the hospital, I wished I had just known a way to communicate with Sonya when she wasn’t wearing her CIs. Surely, knowing some sign language would have been helpful in this situation! Had I just signed, “No you must put your CIs on or you will go to time out!” we would have probably avoided the entire horrific situation.
So, I have decided to do just that. If anything this situation was a learning experience. Sonya is getting bigger and the circumstances in which she refuses to wear her CIs are becoming more dangerous. Without communication I am forced to physically react and obviously that simply is not acceptable.
Following the disaster of a morning, I tried to make up for it. I took Sonya to Buckingham Palace, where we emulated the Queen’s guards as they stomp their feet. We had lunch in a restaurant (french fries and chocolate ice cream) and topped it off with a trip to Hamley’s. Sonya picked out two plush kittens which cost 35 pounds each. Yep.
Did I mention the Langham hotel in London has a great bar? 😉
UPDATE: we did teach Sonya a handful of signs including: all done, more, milk, water, mommy, daddy, I love you, no, time out, and eat. I find that when she removes her CIs, she also will turn her head away from me. Sign doesn’t really help in these instances either! That said, I do think that some sign is great to have as a back-up. However, I have found that Sonya prefers speaking to sign. She just gets tired of listening sometimes.
Sonya, Yan and I are spending the week in London! Sonya has been talking non-stop about the trip. Ever since Yan brought back the book London Calls from a prior trip, she has been obsessed with the Queen, the London Eye and the Gherkin. We arrived last night and Sonya screamed with delight every time she saw a double-decker bus on our way to the hotel (much to the driver’s delight, I imagine).
I can’t wait to share our trip when we get back next week! In the meantime, here is a video from Sonya’s last speech therapy session. She clearly is excited about our trip 😉
For the past couple weeks we have been in Venice and Lake Como, Italy. Thought I would share our memories and some wisdom after traveling with a “threenager” who has cochlear implants 🙂
For the past couple of weeks we have been in Italy. This was the third summer we have spent time there (see our Amalfi Coast trip here and our Tuscany trip here), and the country continues to impress us. I thought you might be interested in seeing some photos and a bit of wisdom gained from experience while traveling with a now almost “threenager” who has cochlear implants.
It’s funny, I used to be a nervous flyer. I tried wine, Benadryl, meditation, you name it. Funny enough, traveling with a toddler cured me. When you travel with a toddler, you must be so present it is nearly impossible for anxious thoughts to take over. You are surviving the current moment, be it pulling Sonya down from the arm rest where she is yelling at the people behind us to “wake up guys — it’s morning!” to playing pretend animals with her, to finding her milk that hasn’t expired after sitting for eight hours in your thermos, so that she can go to sleep. On the flight over, Sonya actually did sleep! And then I had wine. And it was a great flight 🙂
We spent the first part of our trip in Venice. If you are afraid to visit this city with kids, please don’t be. It is wonderful. As in previous summers, we traveled with Yan’s parents, and alternated between days with Sonya and days where we traveled alone. Sonya loved San Marco square. We had talked about visiting it often before our trip. We read Olivia Goes to Venice at least fifty times before our trip.
The square didn’t disappoint. Sonya LOVED watching the people, the thousands of pigeons, listening and dancing to the music played by live bands at some of the restaurants, and most of all, eating the gelato every night after dinner. So much so that she had a full on tantrum one night and threw off her cochlear implants. The hook on one of the processors broke off. We spent the next morning trying to find it.
Of course we didn’t find it. We could have contacted Cochlear and ordered new hooks to be overnighted to Italy (they cost about $15 for a set of two not including shipping), but ultimately decided it wasn’t worth the hassle. Sonya wore her Ruby Band headbands for the duration of the trip and it wasn’t a big deal.
Since we had Yan’s parents Lillian and Eugene with us, we took turns watching Sonya and touring areas of the city. Highlights included seeing the Giotto frescos in Padua; the Scuola San Giorgio Degli Schiavoni (for Carpaccio) and the Scuola Rocco (for Tintoretto), Prosecco tasting in the Venetian countryside and of course, the food 🙂 Above all, Yan and I felt very lucky we had some time alone together. Thank you Baba and Deda so much for everything!!! ❤
My favorite memories, however, are of buying fresh foods in the Rialto market and making dinners at home for the entire family. It was so special to be together in such a beautiful place.
LAKE COMO – BELLAGIO
From Venice, we rented a car and drove to Bellagio. The drive begins on a boring highway but after two hours, the road narrows and winds through small hills that eventually merge into the Italian Alps. Lake Como is extraordinary. People say it is impossible to take pictures there – the photos do not do the place justice – and they are right. At least my photos 🙂
We stayed at the Belvedere Hotel in Bellagio, which overlooks the lake. We didn’t swim in the lake, but the views are incredibly serene and the weather is cooler than Venice this time of year. Our hotel pool was a wonderful respite for the entire family, above all Sonya, who loved to wade in the shallow water and play with her boat. She wore her Ruby Band swim headband and we had no issues with the processors being impacted from water.
During the day, we took the ferry to see different villages in Lake Como. Varenna was an amazing town with a beautiful villa – Villa Monastero – which had gorgeous gardens and views. Sonya – was a bit tired by this point and luckily we had brought her iPad and Mini Mic. She watched “Mickey the Mouse” while we enjoyed a glass of wine. I felt a bit guilty but only a little bit. We all deserve a break sometimes 🙂
On days when we stayed in Bellagio, we enjoyed taking long walks down the boardwalk where we would drink espresso, do some shopping, eat gelato (fig was our favorite – but Sonya is partial to “chocolick” (we are still working on word endings in speech therapy).
One day, Yan and I took a drive north to Lugano Switzerland. A beautiful place with amazing pizza! We had the best Napoli pizza since Amalfi at Ristorante l’Argentino.
My favorite meal, however, was in the hilltops next to the farm, Trattoria Baita Belvedere. With breathtaking views of Lake Como, this quaint and casual restaurant offered traditional rustic fare sourced from neighboring farms. We ordered way too much and somehow finished everything. I even bought a couple jars of lavender and linden-infused honey that complemented our cheese plate. My mouth is watering as I write this. : )
We had such an incredible trip. Yesterday Sonya told me “I rewy miss Itawy mama! Can we go again soon?”
I hope so!
P.s. Because I was in denial about coming back to the states (especially with everything going on here..) I created a 14 minute movie about our trip. Yes, it’s super cheesy. I think it’s a fun escape though 🙂
Sonya is attending CampedUp, a unique camp where kids with hearing loss can socialize, gain self advocacy skills and have an awesome time!
“Thanks, but we don’t do playdates with other deaf kids.”
These very painful words believe it or not came from a mother who, like me, was raising a baby with profound hearing loss. She explained that she didn’t want her child to be held back by other children who couldn’t hear.
Thankfully, we also had Ketty Baalla in our lives. Ketty has been Sonya’s Early Intervention Service Coordinator for almost three years. More than that, she has been a friend who has personal experience raising a child with hearing loss. This past fall, I asked her about summer activities she would recommend for Sonya. Her response?: CampedUp, a day camp for children with hearing loss.
“But shouldn’t we focus on programs with hearing children?” I asked. My fear that this mom was right had made its way in.
Ketty and I spoke on the topic for an hour. Her experience with CampedUp was not limited to her work as a service coordinator for kids with hearing loss. Her own daughter had attended the camp and it had been life changing for them both. “After CampedUp, my daughter had great interest in her devices,” Ketty told me. “At audiologist appointments, it was my daughter – not me – who asked the majority of the questions. She gained a confidence and interest in her devices she didn’t have before. She had taken ownership of her hearing loss!”
I signed Sonya up that afternoon.
For two weeks, Sonya has attended the camp. I can’t say enough positive things about it. Created and operated by Hearing Loss Specialists, CampedUp provides a unique community in which children like Sonya can socialize with other hearing aid and cochlear implant users of different ages, gain self advocacy skills and above all have a wonderful time.
“We recognized the need for kids to have an opportunity to form relationships with other children with hearing loss, outside of a therapy setting,” says Dana Selznick, co-Founder of CampedUp and a Hearing Education Specialist. “We wanted to create an environment where campers can play, create and build a community among their peers starting at a young age. Brittany Prell [CampedUp’s other Co-Founder and Hearing Education Specialist] and I grew up going to camp and our experience helped shape who we are today. We wanted our camp to have the same impact on their lives as it did ours.”
So far, Sonya has enjoyed projects such as marble painting, creating a color changing chameleon, meeting a “real life” princess and a super hero, decorating paper fans with bubble art and making homemade bouncy balls. The highlight was a reptile show!
While Sonya attends half days, the camp goes from 9 a.m. to 3 p.m. each day. Kids enjoy a morning snack and an afternoon “fun with foods” activity (yesterday they churned butter!). A hot meal is provided during lunchtime. Each afternoon kids play water games on the roof of Stephen Wise synagogue and this week (among other activities) will meet children’s book author (and speech pathologist) Fara Augustover, author of Harmony Hears a Hoot, a story about Harmony an owl who has hearing loss.
“As a hearing education service provider during the year, I typically see these campers in a mainstream school setting. It’s great to connect with the campers outside of an academic environment and to see them build friendships with other kids wearing cochlear implants and hearing aids. I love to see that ‘aha’ moment, when they realize that there are other people just like them.” – Brandi Prell, CampedUp counselor.
One of the most valuable lessons CampedUp teaches to its campers is self-advocacy. These skills are interwoven into the activities campers do all day long. “We foster conversations among our older kids about their hearing loss and talk about how they describe their hearing loss to their hearing friends,” explains Dana. “Campers share what they like about their listening devices as well as challenges that they may have experienced, so that the campers can help each other problem solve solutions.”
For CampedUp’s younger kids: “We read stories about characters who, like them, have hearing loss. We also encourage campers to include their listening devices in their art work. Throughout the entire camp day, campers are encouraged to identify when they need a word repeated. We help them figure out how to find the best seats for their listening needs. Campers also learn to take care of their equipment during sprinkler time when we are taking off and switching devices,” she says.
As I put Sonya to bed the other night, she asked me, “Mom, do we have camp tomorrow?”
“Yes,” I responded.
“Okay, good.” she smiled sweetly, “I love to go there.”
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.
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.
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.
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.