After a long day of speech therapy, the playground, and an annual checkup at Sonya’s pediatrician, Sonya threw off her CIs. They landed in the middle of a very busy West End Avenue. “Dammit!” I shouted as I strapped Sonya into her stroller, locked the brakes and proceeded to run into the street before a car nearly ran over her thirty thousand dollar equipment.
As I returned to the sidewalk, a nanny watching nearby with her own stroller, shook her head at me. At first I thought it was a sympathetic shake as in, “I can’t believe that just happened to you! Toddlers!” shake. But when we crossed paths as we walked back uptown, she shook her head again at me. Yep. It was a judgment shake. I had “exposed” my daughter and her own to blasphemous language.
Little does she know…
At home, it is often the case that…well… my speech is not exactly angelic. I find myself on swearing rampages when Sonya takes her CIs off. The frustration of dealing with a toddler, coupled with the frustration of ensuring that she wear her cochlear implants at all waking hours gets to me. I used to feel relieved that she couldn’t hear when the headband was off. That was, until I took the below video. Sonya is in her bed. She doesn’t want to nap and is crying. And then 15 seconds in…she says….
Apparently, her lip reading skills are not terrible.
A part of me feels very ashamed by this. Obviously, I have failed Sonya for her to use that word. I am sure many people will agree.
And yet, a part of me feels incredibly proud. The “f” and “k” sounds are not easy to produce. She is obviously hearing them well with her cochlear implants, and is producing them, which is actually incredible given that she was born deaf. Her speech has come a long way.
I wonder how many other parents out there can relate to this? When the CIs come off, do you find yourself blowing off steam by way of swearing? Is this really truly horrible? Or, is it actually good for you? A recent study points out that swearing is a “creative, emotional release that can make you feel stronger.” As a mom to a toddler who also is deaf, we have a lot on our plate and i.m.h.o swearing isn’t the worse way to release it.
That said, I do hope that I can teach Sonya alternate ways of expressing herself…this is not that flattering, really.
In a month, we will celebrate Sonya’s third birthday! While I can’t believe three years have passed already, I also can’t believe we have only had Sonya for three years in our lives. She has had such a profound impact on who I am.
As Sonya approaches her big day, we are also working on transferring our speech therapy services from Early Intervention (which is state-sponsored) to our local school district. To do so involves a somewhat lengthy process, including:
A referral from Sonya’s EI service coordinator, informing the school district that Sonya was born deaf, has been receiving speech therapy through EI and that she should be considered by the school district for special education services (i.e. speech therapy and in-classroom support);
A psych/ed evaluation, which assesses the child’s physical, mental, behavioral and emotional factors;
A speech and comprehension evaluation, which assesses the child’s current abilities; and
Letters from Sonya’s audiologist and surgeon detailing her hearing loss and the tools she will need to succeed in school (i.e. FM system and receivers).
In the below clip, you can watch excerpts from Sonya’s speech and comprehension evaluation. The entire evaluation was nearly two hours, but this gives you an idea. Also, I was observing behind a one sided mirror – so the quality is a bit grainy.
Once the evaluation is complete, we met with a school administrator who discussed Sonya’s progress and whether she would be granting us the accommodations we requested. Since Sonya will be in preschool five mornings a week this year, we requested a hearing education specialist to be in the classroom with her three times a week; for the school to order an FM system (and receivers that fit on Sonya’s processors) that we can use; reading help once a week; group therapy and individual therapy.
The school board meeting was one I dreaded for a long time. I had heard horror stories from other parents, who said they would resort to tears and refuse to leave the room until the administrator granted an accommodation. I heard of another parent who brings a big black binder with her child’s adorable photo on the cover. Looking extremely organized, she runs the meeting! (It’s actually a phenomenal idea). Thankfully our meeting went very smoothly. That said, we will continue to have them annually until Sonya is out of high school. Chances are, we will face such challenges in our future.
In other news, Sonya has grown so much this summer. I have noticed that when Sonya has a developmental leap, she tends to remove her CIs more frequently. Yesterday, she refused to wear them at speech therapy. It took 30 minutes of prodding before she finally agreed to wear them (the game of hot potato finally coaxed her); and this morning, she threw them off just as we entered NYU’s Cochlear Implant Center for her three month mapping. It’s frustrating to say the least. Sonya speaks loudly without her CIs and tends to hurt herself too. Yesterday she was being crazy and hit her head on the corner of a bench and now sports a small red dot right below her hairline 😦
Something tells me that we are only starting to appreciate the true challenges that await us as parents of a ‘threenager’ 🙂
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 🙂