For the past couple of months, I have struggled to get Sonya out of bed in the morning. We are perpetually late for school (despite the fact that we live four minutes away). I have been on the lookout for alarm clocks for kids that are hard of hearing, but I was disappointed by the bulky and not kid-friendly options that I found (I don’t know about you, but I wouldn’t want to put a vibrating disk that is attached by wire to an alarm clock under my kid’s pillow…)
Fast forward to today: Sonya wakes up on her own. She eats and leaves the table when it’s time to get dressed. Today we were so early to school the doors hadn’t even opened yet! For any parent out there that struggles to wake up their child (with or without hearing loss), this watch has been a game changer!
The Aupalla Kids Health Activity Tracker is similar to a Fitbit, but smaller and softer rubber for little wrists. You can program the vibrating alarms (we use multiple alarms to get her up and going in the morning) from your phone. The downside to the watch is the face, which in my opinion is a bit hard to tell the time, though Sonya has figured it out. Also, Sonya’s watch shows 24-hour time rather than 12-hour, but I guess we live in Europe now, so I should get used to it 🙂
I love that I can control the alarms from my phone. I have numerous alarms set up with different icons. Sonya can see that it is time to wake up, time to eat, time to get dressed, time to do her reading and even practice piano. It’s not an Apple Watch, but for a five-year-old kid, it’s really a great and inexpensive solution.
Just a cute, fun hack that has really worked, so I thought I’d share!
For young New Yorkers, a scooter is a rite of passage. Walk down West End Avenue, and you will inevitably see a two-year old child (or younger!) careen by in one. Their hands holding the handrails tightly. Their mouths frozen in a smile that borders hysteria; intense fear in their eyes. Years ago, I swore to Yan that we would never get one for our future child.
Fast forward to this past Spring. Sonya (seated in her stroller) would point at children on scooters on our way to school. “I want that!” she told me. “I want a purple one!”
“Uh huh,” I said. Trying not to encourage it.
“Mom!” Sonya’s eyes lit up. “We can go buy one at the store!” It wasn’t a demand as much as a realization.
A week later, I gave in (yep…I know….judgers gonna judge). We went to West Side Kids toy store, and Sonya picked out the scooter of her dreams. She was so thrilled she rode it out of the store.
Here she is enjoying her first ride:
West Side Kids only had a limited selection of helmets. We went with a Nutcase helmet – mainly because they were cute (again…I know). Sonya picked one out with pink and orange flowers. The sales person removed some of the styrofoam protection on the inside, so that the coils of her CIs would not fall off as soon as we put it on.
Unfortunately, the helmet didn’t work. It either hung too loosely (and would knock of her CIs every time she turned her head) or would be too tight to put on with the CIs comfortably and without sliding her headband down her forehead in front of her eyes. It was also impossible to tell if the CIs were working or not. The helmet blocked me from seeing the front of her processors (which blink green if the CIs are working and yellow if not).
After a couple falls we put the scooter away. Sonya didn’t want to ride it anymore, and I didn’t want her to either – not until we had a solution that didn’t involve her riding without a helmet or without sound.
Per the advice of a friend (who’s son faced a similar dilemma), I took Sonya to Bicycle Renaissance to see if they could fix her helmet. After careful inspection, the salesman told me the Nutcase helmet was just not right for her. She needed something bigger with a flexible inside so that we could adjust it to fit her CIs. He suggested a Bern.
I bought Sonya a Bern Unlimited Jr. helmet from Amazon. I love it so far. The main positive is it has a velcro strap in the back that easily allows us to customize the fit to her head – with the CIs on. I can easily see the CIs blinking on her ears (as the helmet rests a bit further back on her head), and yet the coverage is still very good (with a sun visor no less). Sonya loves the bright pink color and wears it when we are home for fun. Win win!
Today, Sonya talks frequently about her scooter. She points to it proudly and declares “that’s mines!” each time we get out of the elevator to our floor as it sits in our hallway outside of our apartment. Unfortunately, she isn’t yet feeling up to riding it (and we aren’t pushing her to do so). She is a pretty cautious child after all, and a couple of those falls weren’t pretty. That said, I feel better knowing that at least we have a helmet that fits in the event she decides to give it another whirl (that is until she outgrows it…. I guess we have a couple months :).
Several weeks ago, Sonya started a twos program! Considering the fact that she has undergone speech therapy at the Center for Hearing and Communication since she was just four months old, including group speech therapy with other kids her age, Sonya was more than prepared. I on the other hand….wasn’t quite as prepared.
Sonya’s group speech therapy at CHC
And the issue was not Sonya’s preparedness. Rather, my ability to understand and demonstrate to her teachers how to use her FM System.
While Sonya’s cochlear implants allow her to hear a great deal in a quiet setting, many children who wear them still have difficulty hearing a teacher’s words when there is lots of background noises and over long distances. An FM system is an assistive listening device (or ALD) which helps a child hear the teacher and their classmates above the noise of a typical classroom.
Sonya in her new classroom – not quite in her comfort zone – but she quickly acclimated 🙂
To get a sense of how hearing loss is worsened when confronted with such conditions, take a look at the following eye-opening demonstration:
Sonya and me in the classroom. I am wearing the Roger Inspiro FM System around my neck.
As we walked into the classroom, I realized that it was up to me to ensure that Sonya’s teachers understood how to use this bulky and not exactly user-friendly piece of equipment.
I found myself fumbling with it and with Sonya’s processors to ensure it was working. I got a bit obsessed making sure that her processor lights were blue (indicating that they are connected to the FM). I thought I was somewhat on top of it until the yoga portion of Sonya’s school day began. The yoga teacher of course was happy to wear the device, but I realized it was not working at all. The microphone which is supposed to attach to the teacher’s collar kept slipping off, and the FM system around her neck became tangled. It was obviously uncomfortable for her. She did her best, but the technology just could not keep up with a physical class.
At some point, I just felt helpless. Sonya is not old enough to describe what she is hearing. She can’t tell the teacher whether she is hearing their voice, or if the FM system is just picking up static (which sometimes happens if the system picks up unintended sound signals and needs to be switched to a different channel). I was not prepared and I didn’t have the knowledge to serve as her teachers’ teacher in this regard.
Thankfully, the CHC is able to come to the rescue. They will be sending a hearing loss educator to the classroom next week to explain how to use these devices to the teachers (and to me too).
I am a big fan of the Mini Mic (as I have dscussed before). We have used the older model a ton, be it at the American Museum of Natural History, at noisy restaurants or even on airplanes. The newest device has a much longer battery life (11 hours compared to three) and includes a low battery indicator light. You simply turn it on, make sure Sonya’s remote is switched to the Mini Mic setting, and you are set.
The device might just be a perfect solution for a toddler attending preschool. At $395 it seems like a no brainer, but I have decided to consult with our audiologists first. I will keep you posted as to what I learn!
In the meantime, look forward to learning if other parents have tips or suggestions on using the FM System in school. What works for your child? Have you also found that toddlers are just too young for such advanced equipment?
Recently, a friend of mine introduced me to Rubybands on Etsy and I am forever grateful. These adorable headbands have little pockets on each side that hold the processors with a small hole for the wire of the coil to fit through. Sonya loves them. They are more comfortable for her, since the processors are not sitting behind her ears (with the pressure of a headband pushing them into her head). I love them, because they hold the processors securely in place -and prevent her from pulling them off (and tossing them away – which she has a tendency to do…) They are also adorable. She looks like a little Rosie the Riveter.
They come in a number of colors and designs. So far, I have bought them in turquoise gingham, black and white check, and a bunch of solid colors too. I went a little overboard 🙂 My only concern is that she will get so used to wearing these headbands, she won’t want to wear the processors behind her ears anymore. So we will continue to use the crochet headbands for bath time. The bands also work for boys (the knot can go in the back rather than on top).
Will keep you posted on additional solutions I come across. In the meantime, check out my earlier post on fashionable hearing aid solutions.
For weeks we struggled with Sonya’s persistent desire to remove her CIs. Nothing seemed to work. Nothing, that is, until in desperation we turned on our computer and let her watch Peppa Pig on YouTube. Sonya was immediately transfixed. Maybe it was the bright colors, the cheeky anthropomorphic animals, or the simple drawings. It might have had to do with the fact that one of Sonya’s first toys was a stuffed Peppa Pig doll. Whatever it was, Sonya wanted to hear this show. She pointed to her ears and sat still so that I could put her processors behind them.
This approach has worked 100 percent of the time. Even better is the fact that she is taking her processors off less often.
Our speech therapists have rallied behind this development. We incorporate Peppa and her family into speech therapy. Using a Melissa & Doug Wooden Doorbell House, we place a member of Peppa’s family inside each of the four doors. From there, Sonya must say “Hi Peppa Pig” or “Hi Mummy Pig,” etc.
Though I am happy we found a solution, I was initially disappointed to find that videos were the key to keeping Sonya’s processors on. I felt like in some way I had failed her. That I was taking the easy way out. I didn’t even want to admit to it on this blog. I worry that I may have opened Pandora’s Box. Perhaps Sonya will realize that I have no Plan B and will simply take her CIs off whenever she is in the mood to just zone out and watch TV.
While we are not a family that has forbidden screen time, we have tried to limit it. We allow Sonya to watch TV for about 15 minutes in the morning before breakfast and when we are driving to therapy and back. I am trying to phase out mindless videos and focus on interactive iPad games such as Daniel Tiger, Peek-a-Boo Barn, Toddler JukeBox, and My Very Hungry Caterpillar instead. I think that most everything in moderation is okay, and that some screen time that serves a purpose is okay.
But I have decided to be less harsh on myself. I’ll cross the above bridge if/when I get to it. For now, the importance of her being connected to the world of sound outweighs the potential negative side-effects. Including the fact that the theme songs to Peppa Pig seems to be burned in my brain.
On the other hand, how adorable would it be if Sonya learned to speak with a British accent?!
Sonya recently discovered a new game. It’s one she tends to play when frustrated or tired. She will look at me mischievously, then will pull off her CIs and (while smiling) drop or throw them on the floor. As soon as she sees me get up to put them back on her head, that’s her cue to take off running and laughing hysterically.
Unfortunately, on Tuesday, Sonya ran full speed into our radiator, face first. I don’t think I will ever be able to erase the sound of her little head hitting the wooden radiator cover from my memory, nor the guilt I feel that I could have prevented it.
I wasn’t sure how severe the wound was. She was crying like crazy, but calmed after a few minutes. I didn’t see much blood either. Just a cut that ran an inch length-wise above her eye, crossing her eyebrow diagonally.
I immediately FaceTimed my dad, a physician, who told me to call our pediatrician’s office. They told me to come by right away so that Sonya’s doctor could take a look, and we were there 10 minutes later.
By the time we got there, the bleeding had picked up speed. It was now running down her little cheek. Gotta love our pediatrician who, when entering the examination room to see me in shock and Sonya bleeding, asked calmly, “So, how has your day been?”
“Horrible!” I cried.
After cleaning and examining the wound, he referred us to a plastic surgeon on the Upper East Side – who he said would be able to stitch the wound without impacting the shape of her eyebrow.
I had no idea what was in store. Watching Sonya get stitches was one of the top three (if not the) worst moment of my life so far. Since she is so little, they decided not to sedate her, rather give her local anesthetic – which needed to be injected by needle to the affected site. Sonya screamed in pain. Once the pain relievers went into effect, Sonya still felt the tension of the surgery, so she continued to scream and cry “Mama!” and “Dada!” I meanwhile, tried to hold her down with the help of another nurse to make sure the doctor was able to do his job. Several internal stitches and seven external stitches later, we were done. Sonya got her Thomas the Tank Engine stickers and we went home.
Sonya fell asleep in the Uber back to our apartment, and stayed asleep for a couple hours that afternoon. It wasn’t until she was in her crib asleep that the events of the day hit me, and I am still recovering. Sonya meanwhile, seems to be doing okay with her wound. She points at it from time to time, and says something that sounds like “bobo.” Today, I put a band-aid on her baby doll’s head, and told her that in one week, it would be all better – which is when we will go back to the surgeon to remove the stitches.
So it seems, that Sonya will need to go back to wearing headbands. Hopefully, they prevent her from removing her CIs and taking off like a mad person. I am also further baby-proofing our apartment…Would love to hear any other ideas on how parents kept baby’s CIs on during this toddler phase.
This post follows an earlier post On Music in which I discuss how we are approaching music education for Sonya.
Sonya points to her ears when she hears Yan practice piano. “Ee!” she says, meaning “I hear it!”
This afternoon as Sonya napped, I did something I hadn’t done in a long while, I listened to music for fun. As Radiohead’s Separator played, I concentrated on the first dense and complicated beat, which in its second half drops into a gorgeous guitar melody. It’s impossible to describe. I want you to listen to it. It suddenly hit me that Sonya may never love it as I do.* It might not be something I can share with her when she is older and it pains me to think that.
Music used to play an enormous role in my life. My dad plays the piano and guitar. To avoid having to clean up after dinner as a kid, I would sit in the rocking chair in our living room and listen to him play. I wanted to be like him so I took up the instrument too, and then, in high school, the guitar. In college, I continued to study classical piano, folk music, pop, alternative rock and (a bit embarrassed as I write this) underground/old school hip hop.
This changed once I knew Sonya was deaf. When we incorporate music into our playtimes, we do so purposefully in order to help Sonya understand how to listen. For example, rather than just enjoy a song in the background, we play the song, dance to it, and then stop the music to help Sonya understand to listen for sound. Months ago, (to my naive delight) Sonya would dance to what I believe was music in her head. Now she knows that she must hear music aloud to dance. She will now point at the computer when she wants to hear it.
We also refrain from having music on in the background, as background noise can make it more difficult for people with hearing loss to perceive speech sounds.
I miss music but I also must remember that I don’t have a crystal ball. We don’t know whether Sonya will appreciate it when she is older. We don’t even know what she is hearing. She may hear the overall theme or rhythm, but she might miss the oftentimes subtle moments that make music so pleasurable.
For now, Sonya certainly appears to love it. Whenever Yan has a moment to practice piano, Sonya runs to living room pointing to her ears and shouting “EE!” her sign for “I hear it!”
*I do realize this might be the case regardless of Sonya’s hearing loss. Yan also hates Radiohead 🙂
I am embarrassed to admit it, but it wasn’t until a couple months ago that Sonya finally began to wear her waterproof cochlear implants in the bath.
Sonya’s first bath at one week
Since we are in and out of Ubers and speech therapy sessions almost every day, taking a nightly bath has always felt like a necessity, and a frustrating one at that. Sonya kicks and screams her way in and out of the water. On our part, the goal has always been to complete the task quickly as possible.
When I told our speech therapist that Sonya had not yet been exposed to sound in the bath, her eyes widened. “How could you not let her wear her devices?! Bath time is a critical opportunity for her to explore sound!”
Cochlear Nucleus 6 water proof sleeves
It was the prompt I needed to get our act together. I dug through the contents of Sonya’s cochlear implant suitcases to find the water proof kit. We placed her processors inside the water proof sleeves (a bit tricky to do actually…) inserted the coils and magnets. We placed them on Sonya’s ears. Since the waterproof sleeves are quite large, we had to use the full-sized batteries (not the compact batteries, which fit Sonya’s small head). Sonya is back to her headbands in order to hold the very large devices in place.
The first time she heard water, Sonya just stared blankly. Perhaps she was stunned as she realized that water made noise. I playfully splashed her, causing her to scream in surprise.
Since then, Sonya has grown slightly more accustomed to bath time, though she still doesn’t love it. I even feel like I have to be careful about how loudly I speak in the bath, as the echo can be too much for her. I have noticed that she hates it when I dip her head in the bath water with the implants on. Perhaps it is the sound of the water that is overwhelming. Sonya does love bubbles, so I try to make sure there are plenty of bubbles in her bath water to keep her calm and interested. We do struggle with other ways of keeping her calm however.
Thankfully, friends of mine have been eager to help. My lovely friend Jane bought Sonya Tomy Do Rae Mi Dolphins. Each dolphin plays a different note when you tap them on their heads. Sonya loves them.
While I realize I need to expose Sonya to additional toys to encourage her to hear new sounds, I hesitate. Bath toys in general gross me out (these water flutes look kinda interesting, but also kinda yucky…). When Sonya was younger, we had her play with a rubber duck in the bath. The type that squirted water. A few weeks later, I realized how disgusting this toy was. Impossible to clean and never totally dry. I shudder thinking about the one time I squeezed it and brown water came out….
But I will attempt to stay open minded and to try other (sanitary!) toys that may be recommended….. Anyone? 🙂
In the meantime, hoping to make the most of bath time!
A few weekends ago we celebrated Sonya’s first birthday! In preparation for the big day, I assembled a photo album highlighting my favorite photos over the past year. As I reviewed Sonya’s amazing growth and development, I couldn’t help but notice the dark circles that appeared under Yan and my eyes.
Sonya has been alive an entire year and we have not slept through the night since.
Early days, when I thought EVENTUALLY I would sleep. How silly I was…
We used to put Sonya down wearing her cochlear implants. She is very connected to the hearing world, and would get upset when suddenly her sound was disrupted. But that decision reversed itself when I recently came into her room only to find her SUCKING on the battery! She had figured out how to remove it from the processor. I am trying not to imagine a scenario in which she swallowed it.
I needed a solution. I decided that maybe she would be comforted by something to look at. I decided the perfect spot would be above her crib. I purchased adorable animal “wall trophies” from Hannah Andersson. We bought a unicorn, bunny, swan, zebra, elephant, sheep, reindeer and fox (when you are sleep deprived, you have trouble making decisions I have learned).
We hung them up as soon as we could. I loved the way they looked. But that night, Sonya freaked out. Perhaps it was the shadows of the animals at night hovering above her. Maybe she wondered where the rest of their bodies had gone…It was the worst night sleep in a long while.
So (thanks to a wonderful suggestion by our speech therapist) I purchased the Baby Einstein Sea Dreams Soother. I am telling you – this product is amazing. As soon as I put her down in the crib, Sonya points at the aquarium, asking for me to turn it on for her. She smiles and laughs as soon as she sees the lights turn on and fish, crab, octopus and sea turtle begin to dance. She then turns to her side to watch the soft lights that look like ocean waves on her mattress. The combination of lights and movement seems to be enough stimulation to satisfy her. She doesn’t seem to miss not hearing.
While great, it’s not a perfect solution. Sonya has learned how to adjust the settings which are on the top of the machine, and she uses it to wake us. In the middle of the night, when Sonya wakes up, she turns the machine on to full volume. I hear Chopin’s second Nocturne and then the sound of Sonya, singing “mama! mama!”
Now it is a beautiful sound to hear my child – who was born with profound hearing loss – to say my name, but less so when I hear it every three hours until I get her, every single night.
I know I am not the only parent in the world to suffer from sleep deprivation. I also realize we can do something about it – a.k.a. sleep training. Which we have tried – and failed at – numerous times in the past. And I know eventually we will stick to it, and it will be better.
Until then, look forward to reading any comments or suggestions you may have at midnight., 3 a.m. and probably around 6 a.m. tomorrow morning 🙂
“She is so adorable!” Our neighbor exclaimed as we held open Sonya’s trick-or-treat bag. “What is she? Some sort of robot?”
“She is a fish,” I replied.
“Well I just love the blinking lights,” she said pointing to Sonya’s processors. “A unique fish you are!”
“Yes she is!” I laughed.
Deciding when to explain to people that Sonya is wearing cochlear implants has never been easy for me. Over the summer, in Central Park’s Great Lawn, a young girl sitting nearby on a blanket pointed to us and sneered, “What are those ugly black things on that baby’s head?” Her dad quickly told her to “shut it.” I didn’t respond. Instead, I packed up Sonya’s toys, rolled up our blanket and left. I was too upset. My biggest fear was that Sonya somehow sensed my emotion and thinks that it was because I was ashamed, which is not the case. I just didn’t know what to say.
From that moment on, I knew I needed to come up with some sort of response. I decided to ask other parents in my situation, and here are their suggestions.
As soon as they can understand, teach your child the language they need about themselves and in a loving way. For example, I should plan to use the word “deaf” and “cochlear implants” around Sonya – and explain that they are just a part of who she is. Explain to Sonya that she is different, but that we all have differences.
Teach your child to use these words as a defense against ignorance. Unfortunately, what the girl in Central Park said will not be the last derogatory remark Sonya will hear in her lifetime. But if I do my job and ensure she is as well-adjusted as possible, when someone says to Sonya on the playground “You’re deaf!” she will hopefully respond with something like, “Yes – I sure am. I use my CIs to hear just like you use your glasses to see.” Ultimately, I hope Sonya is able to teach people to open their eyes and to learn.
Speak up, but not in a defensive way. This past weekend, Sonya and I visited a bookstore where I overheard a child ask her mom what Sonya had on her head. “Oh, I am sure that is helping the baby in some way,” her mom responded. I decided that this time, I would say something. I turned around and asked nicely, “Oh, do you have a question about what she is wearing? I know it is different from what you have seen before, right? These help my baby to hear.” I then removed one device and let the child look at it more closely. The little girl was interested – as was her mother. I realize that very few people in the world have CIs – they are not something that people typically encounter.
In some instances, it just makes sense to say nothing. I have noticed that far more often than not, people are too polite to say anything. I never force the conversation. I only bring it up when it emerges organically.
Find humor, when possible. A question asked in a mean tone doesn’t always warrant a serious response. One parent at Sonya’s speech therapy encountered a rude person who one morning on the elevator asked curtly what those things were on her child’s head. Something about the person’s tone and the fact that it was just too early in the morning to dive into a lesson about the amazing benefits of cochlear implant technology led this parent to simply respond with, “Oh those? they are headphones. She just loves to listen to Howard Stern in the morning.” I love this.
I would love to hear other ideas for responses as well. Do let me know if you have any suggestions!
Hearing Sonya Rose 
