I ordered Sonya the custom MadebyToriC doll through Etsy and it was even sweeter than I imagined! Tori was lovely to work with. I gave her details about Sonya’s hair, the colors of her processors and I received it in a week’s time. Impressive, Right??!!! She captured Sonya’s pigtails and RubyBands headband! This is such a lovely gift. I can’t WAIT to give it to her next week for Hanukkah.
Another Etsy find: A baby doll with cochlear implants (from LeSoZo Arts). Looks like there aren’t too many in stock though, so I would order one soon!
Sophie’s Tales Overcoming Obstacles is a book about Sophie, a little dog with hearing loss who wears cochlear implants. The book comes along with an adorable stuffed Sophie with bilateral cochlear implants. You can have the book inscribed to your child as well.
Harmony Hears a Hoot is a sweet children’s book about a young owl named Harmony who attends her first day of school. I love how proud Harmony is of her uniqueness as well as how she advocates for herself by teaching her schoolmates and teacher about how she hears. Author Fara Augustover doubles as a speech pathologist. You can buy the crochet owl as a companion to the book on the author’s website.
Pikachu is even cuter with cochlear implants, agree?!
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.
Sonya picked out a well-deserved toy from Hamley’s following that God-awful experience…
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.
For three years now I have sat in on countless speech therapy sessions with Sonya. Implanted with cochlear devices at seven months, Sonya’s speech emerged, slowly at first, and then through bursts. Tracking her developmental leaps on this blog has been a fascinating endeavor and I hope other parents who have children like Sonya and who go the route of cochlear implants will get a glimpse of their child’s future through our experience.
While speech has emerged and while Sonya has a sweet, silly and bubbly personality at three years old, I have noticed that she remains very cautious when it comes to approaching new tasks. As we work with her speech therapists, Sonya will rarely participate in an activity until she feels she understands it. She seems afraid of trying something new and of being wrong.
According to Sonya’s speech team, this is not an uncommon trait among children with hearing loss. Given the sheer number of audiological tests, speech and listening evaluations and mappings (which require Sonya to respond when presented with noise), kids with hearing loss often approach new tasks with trepidation. They are working so hard to please that it’s no wonder Sonya and kids like her are afraid to be wrong.
Of course, as a child with hearing loss, Sonya must learn how to cope with the prospect of failure. She will need to fail in order to grow. One of the hardest things as a parent I have observed is stepping back and letting Sonya experience failure. It started as early as her first steps (which I wrote about here).
I also recognize that given Sonya has hearing loss we have thin margins to work with in terms of both protecting Sonya and pushing Sonya to experiment and learn from her mistakes. But how does one teach the importance of failure?
According to a May 2016 Stanford study, the way children perceive “being smart” was related to how their parents reacted toward failure. The more parents believed that failure is debilitating, the more likely children became concerned with their grades rather than of learning and improvement.
Seeing Sonya’s development, I can’t help but recall my own fears as a child. As a kid, I was shy. So shy I remember being at a family function and being introduced as “the cousin who doesn’t talk.” For me, this fear of speaking was absolutely related to a fear of failure. If I didn’t talk, I wouldn’t say anything that would be wrong or potentially embarrassing.
Much to my parents’ surprise, I decided to study abroad in high school. I lived with a French family in a quaint little town of 4,000 people called Espalion, France. I suddenly was immersed in a language I hadn’t mastered and I was quite literally the town moron. I remember people laughing because I kept saying “je suis excitée” when I was excited about something (not realizing the verb “exciter” means sexually aroused in French). Yep. It was a great lesson in failure. And I survived it.
A reunion with my French host family in 2016. I adore these wonderful people and am so glad they met Sonya!!
This experience brought me out of my shell in a way I never expected.
Now, I don’t think Sonya is shy at all. Perhaps it is the years of socializing through speech therapy, or perhaps it’s her temperament (she certainly takes after my mom and mother-in-law in terms of being social). But I do worry about how cautious she is. I hope we will be able to show her that she can learn from her inevitable struggles or setbacks. That failure can be viewed as growth — as long as she chooses to learns from it.
Oh by the way, here is Sonya in her halloween costume 🙂
Now that Sonya’s third birthday has come and gone, she is already asking for Hanukkah gifts! (Yes, I’m well aware that we have created a monster…) Nevertheless, I am keeping my eyes open for toys that features cochlear implants. I have been told that it is very important that Sonya have dolls or stuffed animals that “look like her.” Here is a list of a few that I thought were really adorable. Do you have any others I should consider?:
I love this Cochlear Implant Monkey. Not sure how it would hold up to Sonya’s abuse, but it is really sweet.
You can also find custom dolls on Etsy that can be made to look like your child.
Inspired by a real nine-year-old child, Mia is a wildlife photographer who wears cute red rain boots and jacket, a ladybug sweater and happens to have cochlear implants. How can you not love this?!
We received Kaci the Koala when Sonya was activated as a gift from the Cochlear company, and I still love it. It’s sweet and Sonya can take the CIs on and off – just like hers!
Build a Bear apparently has plush hearing aids you can purchase along with your purchase of one of their bears. Such a great idea! How cute would this Halloween Pumpkin Bear be with hearing aids?
If you admit your American Girl doll to the Doll hospital, you can add a hearing aid or two.
Finally, Makies – one of the first toy brands to get behind the #ToyLikeMe movement, sells different color cochlear implants that can be fitted to a number of toys. They are pretty small (3.6cm x 3.2 cm x 1.1 cm – but perfect for Barbie-sized dolls.
Do you have any other ideas? I am surprised there aren’t more options out there!
As Sonya and I stroll down West End Avenue weekday mornings, we chat. I use the Roger Phonak Touchscreen Mic so that she hears me above the noise of the traffic and the constant construction. We play “I Spy,” we count the number of dogs being walked by dog walkers (we once counted 15!) and we sing. Last week, however, I realized that Sonya was not listening. At three, she now knows how to take off her coils so that she can tune me and the rest of the New York noise, out.
As soon as I realized it, I stopped the stroller, and angrily pointed to the spot two inches above her ear where her coils should be placed. Sonya simply looked at me with a serious expression and shook her head, “No mama! It’s too loud!” I tried to put them on myself (which was NOT the right approach) and in the end, we walked the rest of the way in silence.
Upon entering Sonya’s classroom, the coils were back on her head. Sonya was ready to play and learn.
Interestingly, the same thing happened on our walk home that day. Sonya relayed some highlights of her day and sang her a new song: “this land is my land, this land is your land, from the East Side to the West Side, children gather to play together, this land was made for you and me!” but once we reached 75th street, which also happens to be where ConEd is excavating the sidewalk with jackhammers, Sonya decided enough was enough. She needed a listening break. “Mama can I take off my CIs?” she asked me sweetly.
I mean, how can I argue with that?
According to Jane Madell, a pediatric audiologist and speech language pathologist and editor at Hearing Health & Technology Matters, children with hearing loss often come home more tired than their peers. According to Madell, research has demonstrated a link between listening in an environment with a lot of competing noise and stress. Overall, children with hearing loss must use more effort to detect, process and understand speech compared to their peers with normal hearing. No wonder Sonya can get so tired after traveling noisy New York streets and after her morning at school!
Children with hearing loss need to take listening breaks after a long day. Also, moms of kids with hearing loss need a shot of scotch from time to time 🙂
Madell points out that teachers and families of children with hearing loss need to be educated as to the link between listening with hearing loss and fatigue so that they can offer listening breaks when needed. Using assistive technology (such as an FM system or microphone) will help, but weaving listening breaks throughout the day is also an important technique to help the child regroup and get ready to listen and learn again.
In addition to our walks to and from school, Sonya removes her CIs before her bath (as hard as we tried, she doesn’t like them on during this time). She also removes them for naps and at night time. There are other times of day when Sonya will remove her CIs because she is frustrated. This used to concern me, but I am now starting to realize that her removing her CIs indicates that she needs some time to rest so that she can reenter the world of hearing.
I am curious as to how many other kids with CIs need listening breaks throughout the day? How do other parents build such breaks into their routine (and how do they ensure that the “break” stays a break and doesn’t extend longer?) Would love to hear your thoughts in the comment section below.
When Sonya was just a few months old, her speech therapist pulled out an iPad during one of our sessions and opened the game “Peekaboo Barn” I was immediately concerned. I had always been told that screen time was bad for kids. It seemed almost like a cop-out and it wasn’t until after the session when I brought up these concerns that I began to understand the benefit that this amazing device can have for kids with hearing loss.
Today, Sonya’s iPad has become one of our most important speech therapy tools. At the same time, we must use it responsibly. Our philosophy is that it is okay in small doses and in specific contexts. Sonya can use her iPad in the car or airplane, and at restaurants. We try to focus on active entertainment (i.e. games) as opposed to passive entertainment (TV shows or movies). It’s also a great way to motivate Sonya to put her CIs back on, as I wrote about here.
Here are some of our favorite games for hearing loss. I’d love to hear your recommendations, too…
Back in June, while undergoing IVF, I became depressed. It happened suddenly (and most likely due to the hormone treatments I was injecting twice daily into my belly). My mind would obsess and worry about inconsequential things. I didn’t sleep much. I had bad dreams that would cause me to wake up with a pit of anxiety in my stomach. Then sadness. A deep sadness that didn’t go away immediately after the egg retrieval, but one that lingered for weeks. It wasn’t good. Continue reading “Are You Happy?”
I love telling people about how Yan and I met. It took place in New York City circa late 2007 at a loud bar in the East Village. Upon being introduced by a mutual friend, I soon learned that Yan was a pianist and I was immediately entranced. On our second date, Yan invited me over to his apartment where he made me a mushroom omelette sandwich and then serenaded me by playing Chopin’s Etude no. 3 on his upright piano. I knew at that moment I would marry him! Here is a video of Yan playing:
Fast forward ten years. We are married. We have a grand piano that literally takes up 34 percent of our living room, and we have a three-year-old daughter who is ready for piano lessons (well, according to Yan – but perhaps this is debatable). The only issue is our daughter is was born deaf and wears bilateral cochlear implants. That said, she has always loved music. And we have decided to move forward with piano lessons!
However, Yan’s very Russian mantra “chain her to the piano!” may not yet apply. At least for now. Instead, we devote just five minutes a day to the piano and only if she is up for it. We don’t put her in front of the piano when she is tired or not feeling great. The key is for her to associate the piano with something fun. Not for it to be a drag or chore.
The next few weeks, we are working on accomplishing a few small goals:
For Sonya to be excited to play piano
For Sonya to identify the C key throughout the keyboard
For Sonya to have a general understanding of the keyboard
For now, Sonya is to identify two black keys on the keyboard, press them with her two fingers, then skip to the next three black keys and say “skip”. She then must find the next two black keys. We do this up and down the piano using her left and right hands.
Once she has mastered this, we will work on finding the two black keys, and then finding C.
Since the keys of our grand piano are still a bit heavy for Sonya’s tiny fingers, we purchased the MunkikiM Roll Up Rainbow Piano, which Sonya received on her birthday. The piano rolls up so is easy to store in our small apartment, and the colorful keys are perfect for visual learners like Sonya. She also received My First Keyboard Book, which has a small keyboard and simple songs with visual cues that Sonya can learn to play.
We have a wonderful piano teacher (who is incredibly talented – we aren’t kidding around here:). He visits us periodically to gage Sonya’s progress. Piano isn’t for everyone. It may not be for Sonya, ultimately. She is, after all, genetically predisposed both to love it (given who her parents are) and at the same time for it to be a great challenge for her.
We are tackling hearing loss-related literacy issues head on by having Sonya learn to read early! Check out what we are doing and tips from hearing loss professionals on how to foster strong literacy skills at home and at school.
This past week, Sonya started to learn to read! Well, actually, she started learning her letters, but once a week moving forward she will work with Dana Selznick, education specialist at the Center for Hearing and Communication, to work on literacy skills.
Like other children with hearing loss, Sonya is susceptible to having difficulties in all areas of academic achievement, especially reading and mathematical concepts. According to Reading Rockets, a national literacy initiative, the effect of hearing loss on academic achievement is distressing:
Children with mild to moderate hearing losses, on average, achieve one to four grade levels lower than their peers with normal hearing, unless appropriate management occurs.
Children with severe to profound hearing loss usually achieve skills no higher than the third- or fourth-grade level, unless appropriate educational intervention occurs early.
The gap in academic achievement between children with normal hearing and those with hearing loss usually widens as they progress through school.
Thankfully, extra support for children with hearing loss can significantly improve these effects. Under Dana’s guidance, we will work to help Sonya learn to read hopefully before entering kindergarten.
Our first reading lesson involved identifying the letters of the alphabet, placing those letters on an “alphabet train,” and coordinating images and sounds with letters.
Here is Dana teaching Sonya about the letter “B”. When asked what was pictured, Sonya responded confidently, “wine!” hahaIn addition to learning letters and the alphabet, we spent a portion of the hour reading Elephant and Piggie books together. To Sonya’s delight, Dana has the plush Gerald the Elephant and Piggie set. Sonya held Piggie and I held Gerald as we acted out the story. It was a great way to integrate play, listening, speech and language along with reading. (I just bought the plush set for Sonya’s upcoming birthday, so we can reenact this at home too!)
We have been instructed to work on our letters and sounds every day at home. After our lesson, Dana gave us print outs of the letters we worked on. On Thursday, Sonya spent time coloring each letter. The next day, we played a game using the letters from the Melissa & Doug Magnetic Chalkboard. I presented Sonya with five letters and asked her which one makes the “b” sound, “a” sound, etc. Doing something different every day to keep it interesting is critical. I am perusing Pinterest for other ideas and will share them if helpful.
Dana recently wrote a blog post for CHC’s “Back to School Buzz” on this topic, and suggested parents follow the below tips to foster strong literacy skills at home and at school:
Literacy learning tips for children with hearing loss according to Dana:
Nightly Reading – Encourage nightly reading at all age levels by establishing a reading routine and sticking to it. You’ll promote language skills while creating a special nightly experience. Be sure to discuss the book you’re reading to aid comprehension and point out words and images as you go along. Reading charts can keep track of your progress and help instill a love of reading.
New Vocabulary – Be sure to regularly introduce new stories so that your child encounters new sounds and vocabulary. Exposure to story lines encourages the use of new vocabulary that children may not encounter in their everyday language.
Book Recommendations – Dana recommends visiting the Scholastic website and searching titles by age group. For preschool and elementary students, She really likes the “If You Give” series by Laura Numeroff and the “Little Old Lady” series by Catharina Ingelman-Sundberg. You can chose titles that focus on a letter sound that your child’s therapist is working on, such as “If You Give a Pig a Pancake” for the letter sound “p”. Having your child repeat back sentences and dialogue from the story fosters sequential memory.
Technology Considerations – It’s vitally important to make sure your child has maximum access to sound at home and in school. CHC’s Back-to-School Audiology Tips by pediatric audiologist Anita Stein-Meyers will help you and your child’s teacher identify and fix common problems that can occur with hearing technology.
Advocate at School – Reach out to teachers at the start of the school year to make sure they understand your child’s listening challenges in the classroom and take appropriate action.
We are so excited to begin this journey! We even bought Russian letters so that Sonya can do Russian reading work with her Russian-speaking nanny Nina!
This past Labor Day weekend, Sonya had a big leap in her speech. She can now make the “L” sound! I saw it emerge during speech therapy last week, but this weekend it became more and more consistent. This is a sound we have been working on for…I don’t know, years? Even before she was speaking, we would say to her “la la la look!” and would show her how we place our tongue at the top of our mouths to make the “L” sound.
On rainy weekends like this past one, we love to take Sonya to the Met and “la la look” at the paintings.
Lately, Sonya asks TONS of questions constantly, and we try to get her to talk about what she is seeing in the artwork and how the figures in the painting or sculptures might be feeling and why. Her favorite sculpture of late is Adam by Tullio Lombardo, which is hidden in a room on the first floor away from the crowds. We showed Sonya how Adam had once broken into many thousands of pieces but the people at the museum put him back together like a puzzle! She also loves the story of Adam and Eve and the snake – though she might decide to just start pretending to be a puppy at any given moment. That’s three! 🙂
Sonya’s favorite activity at the Met, however, is sitting in the American Wing Cafe and enjoying some popcorn, while admiring the sculptures that surround us. We love living in New York City!
P.S. When I see painting “The Penitent Magdalene” by George de la Tour, I can’t help but want to reach out and grab the items that lay on the ground near her feet. They look just like Sonya’s CIs! Obviously, I need help at this point…
Hearing Sonya Rose 