An Enchanting Children’s Book About Hearing Loss

This enchanting book explains the golden rules for speaking to someone with hearing loss. A great book for classrooms!

Recently, I met with Sonya’s Teacher of the Deaf at a coffee shop near her school. We talked about ways to encourage self advocacy in the classroom. She took out this book from her bag and told me that she would love to read it to Sonya’s class for her next session.

In the story, a little boy named Freddie meets a fairy who has hearing loss. He is delighted to learn she will grant him every wish he has, but he soon realizes that because she can’t hear well, his wishes often come out wrong.

My favorite page is one I would like to print out and frame. When Freddie becomes frustrated that his wishes are not coming true, the Fairy Queen appears. She tells Freddie that before he wishes again, there are three rules he must learn: “Rule One: you mustn’t mumble. Rule Two: don’t turn away. The fairy needs to see your lips to read the words you say. Rule Three: don’t cover up your mouth. She can’t see through your hand! Obey these three gold rules, and then I’m sure she’ll understand.”

It’s a great lesson in kindness, embracing difference and in empathy — all without being overly sentimental or preachy.

Sonya’s teachers plans to use the book to help all of the children in Sonya’s class be more mindful about how they are speaking to one another, as it benefits everyone to communicate effectively.

I’ll be sure to report back following the book reading to let you know how it goes.

xx

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Hearing Loss Hack: A Kid’s Fitness Tracker That Doubles As An Alarm

Sonya

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!

Have You Considered Teletherapy For Speech and Language?

We no longer live in NYC, but we still access amazing speech pathologists via teletherapy! Would you consider it?

One of the major drawbacks to moving to London is the fact that speech services for kids with hearing loss is significantly less than what we enjoyed in New York City. For kids like Sonya who have cochlear implants and are oral auditory (as opposed to using sign language), options seem limited. As Sonya is high functioning, she was told she did not qualify for any speech services through NHS.

For the past ten months, Sonya has continued to work with her NYC-based speech therapists via teletherapy. Once a week, Sonya has a video conference with her speech therapist, for 45 minutes to an hour. Despite an ocean’s distance, Sonya and her therapists in real time:

  • Do a sound check in which the speech therapist says non-sensical sounds or silly words and Sonya is to repeat them (typically we have her take off one processor and do each ear, then both ears);
  • Play listening games that involve following multiple directions; and remembering sequences of events to help improve her auditory memory;
  • Listen to a story and then retell the story in her own words;
  • As we like to limit screen time, our speech therapist has me print-out work to do during the week, rather than rely solely on computer games. Sonya and the speech therapist will do this work over VC as well – with the speech therapist giving tricky placement directions (e.g. “place the sun on the top right of the picture under the cloud”).
  • Discuss news each week and offer support and suggestions.
Despite living across the pond, Sonya still accesses her NYC-based speech and language therapists via teletherapy

Of course, teletherapy is not a perfect solution. For one, it’s expensive. We pay $130 per session. Further, video-conferencing technology, for all its benefit, just isn’t as good as in-person speech therapy. Sonya struggles hearing certain sounds over the computer (so I will repeat them, to ensure it is just the computer speaker sound and not her ears that are impacting her hearing). Also, technology has glitches. Computer games sometimes freeze, or screen sharing doesn’t work as well as we would like.

Sonya is listening to her speech therapist’s tricky directions when pasting cut-outs on a sheet of paper.

Despite some frustrations, overall, I feel teletherapy has been a good option for us at this time. We have moved countries with a very different system, but I do not feel that Sonya’s speech has derailed as a result. Further, Sonya loves her weekly 45-minute sessions, and I do too! It’s lovely to stay connected to her beloved therapists and has offered us a sense of stability during a rather chaotic time. Moving is always stressful, but having people who can be there (even if on screen) can make all the difference.

For those interested in accessing the specialists at CHC through teletherapy, check out the program overview. I am happy to answer any additional questions as well!

When CI Batteries Fail

When Sonya’s cochlear implant batteries failed, I realized we need to do more to help her advocate for herself.

At the end of each school day, it is British custom for the teacher to escort each student to the doorway and to shake their hand. Today, instead of releasing Sonya to me so that she can enjoy her afternoon snack, her teacher gestured me closer.

“I think something may be wrong with the radio,” she said. “It happened during ballet.” Sonya looked up at me, her eyes wide with fear.

In these situations, I am great at acting calm. “Put your oxogen mask on first before helping others,” is a mantra I love. “Okay, I’ll take a look at the FM this afternoon,” I told her (FM = radio in British).

As we walked home Sonya grabbed my arm and started to cry. I was taken aback by her response. She was trying to tell me something, but was so upset she choked on her tears. “Mama, I can’t hear anything!” She said in between sobs. I’ll never forget the fear in her eyes at that moment.

I removed one CI from her ear and twisted off the rechargeable battery. These batteries have a limited shelf life. They typically last a few years depending on how frequently they are charged. Moving to a new country, having a baby, it was a lot, and I blame myself for not being more proactive to ensure her batteries weren’t getting too old. Frankly, I couldn’t even remember the last time I had them replaced, but there must have been a little juice left since I was able to restart the processor by twisting the battery back on. Just enough time to explain to Sonya that it would be okay.

Suddenly, a little girl from Sonya’s class came running down the sidewalk to us.

“Sonya! Sonya!” she cried. Her cheeks flushed as she explained to me what had happened that day. “Sonya was crying in ballet and she couldn’t hear!” Then, turning to Sonya, she said, “Don’t worry Sonya!” The sweet gesture of this little girl was beyond. Sonya (and I) tried to hold it together but we were both very moved by her friend’s concern. At home, I replaced the processors with a back-up pair of batteries and for the time being, normalcy returned.

Thank goodness for good friends ❤

NHS to the Rescue

The next morning, I went to the Royal National Ear Nose and Throat Hospital, where I was immediately given a new pair of batteries. The NHS is not an easy system to maneuver, and it’s not perfect, but I am beyond grateful for it! In the United States, I would have had to contact Cochlear USA for new batteries. I would be charged $250 per battery and they would likely overnight it. Here, I am given new batteries immediately and at no cost. Further, I was given an entire box of disposable batteries for free, which should last us two months should the rechargeable batteries fail again.

Takeaways

Clearly, Sonya’s teachers needed more education. At pick up, I discussed with Sonya’s head teacher that it was the battery, not the FM that failed. I showed her how to tell if the CI was working by looking at the light on top of the processor. “Green means good and yellow means not connected. No light means the processor is off.” Of course, we had gone through this earlier in the year, but clearly a refresher was necessary. We now keep an extra pair of batteries in the classroom should this happen again. At pick up every day I ask if anything came up hearing-wise that I should know about.

This experience also underscores how critical it is for Sonya to learn self advocacy skills. For her to be able to inform a teacher that her CI isn’t working, and to trouble shoot the technology herself is vital. This is not an easy task. Especially, given that we are in a community where resources for cochlear implants are limited and there are no other kids with hearing loss at Sonya’s school. I certainly miss our Group Therapy sessions at CHC.

That said, we can still help Sonya get there. I am working with Sonya’s teacher of the deaf (ToD) to identify ways to help Sonya fend for herself. Currently, Sonya is to give her FM system to her teacher (not for me to do); but we definitely need to do more.

If you have any tips on how your child learned to advocate for themselves I am all ears!

xx

Missy

Have You Heard of Yoga for Hearing Loss?

Check out five yoga poses that help kids with hearing loss!

Sonya perfecting dhanurasana pose at ‘Lil Yogis in New York City

Have you guys heard of yoga for hearing loss? When Sabine Hobbel learned her son Aidan, now five, was born with hearing loss, she looked to yoga as one way to help him. Sabine created Little Light Yoga and Movement, an online yoga program for kids with hearing loss between the ages of four to eight years.

“Hearing loss isn’t just about the ears,” she told me in a recent video call (Sabine lives in Milan, Italy). “There are so many areas impacted: balance, fine and gross motor skills, focus and attention, reading skills and eye strength as well as self esteem. These are all areas that can be improved through yoga.”

Sabine, a former elite field hockey player in the Netherlands and Australia, turned to the healing properties of yoga after years of the sport took its toll on her body. She was certified as an instructor in 2017.

“While I mostly practice Hatha yoga, I adapt it for kids,” she says. Sometimes parents imagine this zen environment — which seems unrealistic for young children — but this is not my yoga. During my sessions there is a lot of laughter, jumping and being silly. I don’t care about perfection. Rather, we focus on breathing and what is happening in our bodies. It doesn’t matter how flexible your little one is or their body type. Yoga is for everyone.

“If you present yoga in a fun way, kids are happy to do it and the benefits will come without them realizing it. ” – Sabine Hobbel

What does yoga for hearing loss look like? Check out Sabine’s favorite yoga poses below: NB: Before starting, as with any physical activity, make sure your child feels warm enough to start some yoga. Dancing to their favorite song, star jumps or running on the spot are great ways to warm up.

Crab Pose: Great for gross motor, balance and focus

Invite your child to sit down on the ground on their bottom; palms of hands flat on the ground on either side next to their bottom, fingers pointing toward the toes. Feet are flat on the ground, knees are bent. Whenever your child is ready, let them push off slowly into hands and feet, lifting the bottom as far up as feels right. The neck can be relaxed or they can look toward their toes. Eyes can be open or closed, whichever feels right. Allow your child to come out of the pose when it is right for them in the exact, slow manner as they came into it.

What will my child look like doing this?: Most kids will look like an “M” when viewed from the side, with their bottom hovering close to the ground. Some children will manage to lift up their bottom very high, making a 90 degree angle in the knee and in the shoulder joint, looking almost like a table. Other children won’t have the strength to lift their bottom up, but their body is still working hard in the attempt to do so. All versions are right and a cause for celebration. Allow your child to explore in the way that feels right for them.

Additional challenge: If it feels right today, walk while in crab pose. This takes a lot of extra strength, balance and focus. Applaud any attempt, no matter the outcome. As always, communicate so that your child has the best possibilities of understanding you (e.g. use their FM, tap them first, make sure your mouth is visible, etc.).

Candle Breath: Great for focus, fine motor skills, emotional regulation

Depending on your child’s current level of tiredness, you can sit either in criss cross apple sauce (or similar) or remain standing. Hands are flat and palms are placed together, about one hand distance away from the mouth. We’re pretending that we’ve got five different candles right in front of us on a birthday cake. It’s a special cake, and the candles can only go out one at the time, and only if we take nice deep breaths in and out. After the first deep inhale and exhale, fold the thumbs over each other and say “one”. The next deep inhale and exhale, fold the index fingers while saying “two”, and so on until all five candles have been blown out.

What will my child look like doing this?: Most kids are calm while they attempt this activity. Many need some modeling initially of how to fold the fingers, especially once you reach the ring and pinky fingers. Some children will close their eyes while they breathe, this is fine. Some children will need a reminder that only deep breaths will work on these special candles, rushing to blow out the candles will actually not count for this activity (and will not help them to feel calm). There are some children for whom this is a hard activity as they get fidgety. Allow those children to stand while they try this pose. You might be surprised that after trying this pose for a number of consecutive days, they will be able to stay calmer and less wiggly for the duration of the exercise.

Additional challenge: Let your child blow out the number of candles for their next birthday, so that an eight-year-old will have to blow out nine candles. I generally don’t recommend including more than 15 candles in any one session, as this is a lot for most children, but you know your child best.

Pro tip: Tell your child that it can be a great idea to blow out candles whenever they face a tricky situation, as it can help them stay calm and in control. Real life examples include: when asked to share a favorite toy with a sibling; when asked to stop playing video games; and before wax removal at the doctor’s office.

Flamingo pose: Great for balance, gross motor, focus

For this pose, stand up tall on two legs. We’re going to balance on one leg just like a flamingo, so shift your weight onto one foot. Your child can have their arms outstretched to the sides for extra balance. Remind them that they can always place the feet back on the ground to feel stable again. Now slowly let them lift up their leg and foot of the leg towards the front, so that the knee bends in front of them. When they’re done, have them place their feet flat on the ground again. 

What will my child look like doing this? Most children look very wobbly when first attempting this, and that is absolutely fine. Remind them that it is ok to step back on the ground when they feel like the balance is out of control. Most children will be able to lift their foot somewhat. Other options include keeping the toes of the foot that needs to be lifted on the ground, or initially holding on to the adults hand when trying this. Some children will attempt to lift their foot very high, nearly reaching a ninety degree angle of their knee, or they might get their knee up even higher. As always, all versions of the pose are worthy of celebration, we’re not looking for a specific outcome, the practice is all that matters. This pose challenges their abdominal and leg strength in whatever version your child tries it. To try to stand still without falling means that they are very focused and using their balance skills.

Additional challenge: If your child feels stable while standing like this, let them move their arms like flamingo wings! Some children will like to hold hands while attempting this, that is fine too.

Pro tip: Tell your child that it gets easier to maintain their balance if they focus on one, unmoving spot on the wall or floor. Once your child is not wobbling anymore, invite them to feel their breathing in their body.

London Bridge: Great for focus, balance, gross motor skills, eye strength

Let your child lie down on their back, with their feet as close to their bottoms as possible. Feet should lie flat on the ground with the knees bent. Then, have your child lift their bottom up as high as possible, so that only their head, neck, shoulders, arms and feet are touching the ground. The back, legs and bottom are all up in the air. Your child is going to move to the song “London Bridge” which you can sing or find online. Every time they hear the word “down,” it is time to move the body downwards, and immediately up again. Some children can lie flat on the ground, others just move slightly down and up. Whatever is possible, is right today. 

What will my child look like doing this?: Your child will have their bottom lifted as far as feels comfortable. Some children will still touch the ground with their bodies even when they have their bottom lifted due to body size and fitness levels. That is ok, just as any child who is able to lift their lower body completely in the air. Most kids will tire out before the song is over and will be less active towards the end of it, others will be able to complete the song easily. All versions are fine. Many kids will giggle during this silly version of London Bridge.

Additional challenge: If your child completes this song easily, see if they can do the same with one foot lifted in the air! This means that they are balancing just on one leg while lowering themselves and lifting themselves up again. 

Easy Relaxation: Great for focus, emotional regulation

Invite your child to lie flat on their back or belly, whatever feels right at that moment. If your child can understand you with their eyes closed, they can close their eyes straight away, if desired. If not, explain what you’ll do before they are allowed to close their eyes. Explain to them that we are pretending to be ice cream melting in the sunshine. So we’re going to become really aware of the different body parts (you can name or touch them gently, starting from the feet), allowing them to become very heavy, still and ‘melting’ into the ground. Go at the pace your child enjoys, some children can relax like this initially only for a few seconds, others can go up to five minutes and enjoy this blissful state of calm. You can see what feels right for your child today, do not force anything. Longer is not better if it doesn’t feel right. Whenever you feel your child has relaxed for long enough or is unable to continue for whatever reason invite them to roll onto their sides, slowly sit up and take a deep breath in this sitting position showing a big smile if that feels right. Yoga is finished for today! 

What will my child look like while doing this?: Many children feel calm in this pose. About half enjoy closing their eyes, the other half prefer eyes open. That’s all fine. Some children with tight hamstrings will not enjoy having their legs long, but will bend their knees, that is absolutely ok. Many children will automatically move to belly breathing in this pose (also unprompted): showing an inflated belly when inhaling, and deflating it when exhaling.  

Pro tip: Tell your child that it is great to think about melting ice-cream when trying to fall asleep at night.

Looking for more? Sabine has created three online yoga programs for parents to consider:

Sound of a Smile: This online course was developed for children with hearing loss, ideally targeting kids between the ages of four and eight years, the course runs eight weeks and can be found here. Cost: €56.

Yoga for Resilience: This unique course can be enjoyed in two ways: (1) Children can do yoga with the videos Sabine made for them. If desired, parents can choose to watch the explainer videos, which explain why the course is structured in this way. (2) For parents who want the benefit of yoga without the screen time, Sabine has developed videos that teach the parents exactly what the moves are for every week, so that parents can act as teachers. In this case, parents do not show the yoga videos to their children. Yoga on Demand runs eight weeks. Cost: €200 for our readers.

Yoga on Demand: Sabine will conduct an intake interview to learn about your child. She will then send two initial video sessions between 20-30 minutes in length for your child to practice (with parents, if desired). In two weeks time, a follow-up call will take place to evaluate progress and make any necessary adjustments after which you will receive one video per week tailor-made for their child. Every two weeks, you have the option to talk to Sabine again, so that changes can be made and new poses can be introduced. The course runs eight weeks and costs €200 for our readers.

To express interest and for this reduced price, email sabine.littlelight@gmail.com and mention “Sonya Rose.”

Thank you, Sabine! Sonya and I can’t wait to do some yoga!

Some Thoughts on Hearing Services in London v. New York City

This past March, we relocated our family to London from New York City.

Yan and I had always dreamed of living in Europe. When this dream became a reality, we jumped at the opportunity. To raise a family in such an international city, and in such close proximity to so many other countries (namely for me, France ;), was beyond exciting.

Of course, the decision came with drawbacks. I was seven months pregnant when we moved. The idea of leaving my beloved obstetrician and entering a whole new healthcare system was daunting to say the least during this vulnerable time. Further, we made the very difficult decision to (somewhat) separate Sonya from the amazing services she was receiving in NYC for hearing and speech. Above all, we were leaving family and friends behind in the U.S. So very hard to do and we miss them so much.

LOVE NYC.jpg
This little New Yorker will always have a place in her heart for NYC ❤

Five months (!) later, I do feel like we have successfully navigated some turbulent seas. We are currently living in the South Kensington area of London. Sonya finished her school year at a lovely nursery school in Chelsea and in just a couple weeks will be entering reception (which I believe equates to prekindergarten in the US) at an all girls school in our neighborhood.

In June, I gave birth to a baby boy Wolfgang Alexander (“Wolfie”). Just nine weeks in, and we honestly can’t imagine our life without him. He is just the sweetest, most loving baby, who absolutely adores his sister and she him.

Sonya and Wolfie

Despite the fact that mothering a newborn is similar wherever you live, living in London is pretty different. New job (for Yan), new schools, new friends. Sonya is already acquiring an English accent, which is both adorable and surreal. For those out there who are considering such a move (and who have kids with hearing loss), here are some of the biggest differences between living in NYC versus London.

For the most part, the services for hearing loss in the U.K. are much less than in the U.S. (especially compared to NYC). And to be honest, for me, this was the scariest aspect of our move.

In New York, Sonya received the following services:

  • Three hours of individual speech therapy per week;
  • One hour of group therapy per week;
  • One hour of reading help from the Center for Hearing and Communication;
  • A hearing education specialist (or teacher of the deaf) who came to Sonya’s school three days per week for an hour each day; and
  • A Roger Touchscreen device, that enabled Sonya to better hear her teachers at school in a noisy classroom environment.

The following were either covered by insurance covered or we paid for privately:

  • The cochlear implant surgery (insurance)
  • The processors (and replacing broken pieces — most parts of Sonya’s processors were on a two-to-five year warranty, but once the warranty ran out, we had to hope insurance would cover. Our insurance did not cover the cost of replacing rechargeable batteries, for example, and at $250 a pop, it got expensive, quick.
Our hood
An evening stroll in South Kensington

In London — once registered with the National Health Service (NHS) — Sonya received:

  • A referral to meet with hearing loss professionals at the Auditory Implant programme at the Royal National Throat Nose and Ear Hospital. Here, experts in audiology, speech pathology and otolaryngology evaluated Sonya’s speech, her hearing and comprehension and her implants. It took five months to secure this appointment (The NHS is not an easy system to maneuver), but Sonya eventually was officially made a patient in this practice.
  • Through the NHS, Sonya’s CIs and accessories are covered (!). Broken or lost processors are now replaced and at no cost to us. Same with broken batteries and other accessories. Once the CIs are five years old, you are eligible to upgrade.
  • Mappings: Sonya will receive mappings annually at the CI center (and more frequently if needed).
  • Teacher training: We are working with a team from the Auditory Implant programme at the Royal National Throat Nose and Ear Hospital to come to Sonya’s new school and educate the teachers and headmaster on Sonya’s hearing loss and how to use her Roger Touchscreen device, as well as to evaluate the school from an acoustics perspective.

However:

  • Ongoing speech therapy is not included. Given Sonya is doing so well, she is not eligible for speech services through the local authority (i.e. the governing body for the area where we live in London) or NHS. Thankfully for us, the Center for Hearing and Communication, where Sonya used to receive her services, offers a Teletherapy program. I plan to talk about this in a future post, but overall, we love the fact that due to technology, we can continue to access the brilliant professionals based in NYC over our computer. Not only does it relieve any concern that Sonya’s speech could start to deteriorate due to our decision to leave NYC, but it has been a wonderful way to stay in touch with people who have been so important to her life so far.
  • ToD (Teacher of the Deaf) services are limited. For those unfamiliar, a ToD is a teacher who comes to the classroom to ensure that it is a good hearing environment for Sonya. In NYC, we were incredibly fortunate to have a well-trained ToD come to Sonya’s school three times a week to ensure she was hearing well in the classroom and playground. We will be lucky if we get someone once every six weeks here. There is an option to pay privately, but so far, the costs are crazy high (around £200 an hour) to do so. Further, to have a ToD in a London classroom is unusual. It’s sad to say, but there is definitely a stigma for a child who has one. (On the contrary in New York, where there were always numerous professionals in the classroom attending to different kids who had various needs).

There is so much to say about our time here so far. In truth, it hasn’t been the easiest transition. I was expecting a challenge, but this was a bit more than I bargained for 🙂 That said, there are many aspects to life in London that are so much easier than our life in NYC. Our neighborhood is saturated with green, with lovely private gardens on every block. We can actually see the sky (Sonya has developed a fear of thunderstorms because she can actually see clouds here); and overall, life is more relaxed and laid back. Londoners are always shocked when I describe their city as calm, but it’s all relative. The best part is that Sonya has adapted incredibly well here. She easily makes friends and continues to charm everyone who meets her.

Given the limited services for hearing loss, I plan to be even more involved in Sonya’s education than before as I feel solely responsible to ensure that she has an equal opportunity to be successful. It’s daunting for sure, but I keep telling myself that if I can survive living in New York City for 13 years, I can do anything 🙂

Here is a video from last weekend of Sonya enjoying summer in London town ❤

xx

Missy

Some Big Changes

London calls

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.

xx

Missy

 

So I Was Wrong. The Aqua+ IS Important and We Should Have Been Using It….

IMG_0160

I recently wrote about the fact that Sonya never needed the Aqua+ accessory (which make her processors waterproof). Summer sprinklers and the occasional dip in the pool never had an effect on Sonya’s processors (and if it did, I just popped them in the Zephyr dryer overnight).

Some readers were baffled by my seeming lack of concern about damaging the processors. The thing is, I just don’t like the Aqua+ silicone sleeves. They are bulky and way too large for Sonya’s little ears. My thinking was that her enjoying water activities (and its sounds) outweighed the risk of damaging equipment (which was still under warranty). However, now that she is swimming every weekend, we have learned the hard way that she really does need this accessory.

After her first swim class (which is definitely more water-intense than just splashing in the pool with friends), one of the CIs stopped working. I placed it in the Zephyr. Still nothing. I restarted the device, which worked temporarily, but then failed again. Ultimately, we had to replace the processors.

So yeah, I admit I was wrong. Clearly it’s important to put the processors in the sleeves, but the question remains: how do we keep the sleeved processors (now heavier and larger) on little Sonya’s head while she swims?

While I love the RubyBands swim headband for its look and for light water use, it stretched when drenched with water and then didn’t stay on Sonya’s head well. So I purchased the Headbands for Sophia Swim Headbands for Aqua+. This is a perfect option. Made of neoprene fabric (also used for wet suits) the headband is sturdy yet flexible. The loops are larger, so they fit the processors fitted with the Aqua+ sleeves perfectly/snugly.

While we have the headband situation fixed, I am now looking for a swim cap that will will 1. keep Sonya’s hair relatively dry as we head into the winter months; and 2. That will also not be too tight so that it is possible to fit on her head over the devices/headband. It can be so frustrating getting this gear on our squirmy kids’ heads, really… Currently, Sonya is using her old swim cap from the JCC Manhattan, which keeps everything in place, but does little to keep her head dry. I purchased the TYR Wrinkle Free Junior Silicone Swim Cap, but not sure if it will do the trick (it arrives later this week). Please do let me know if you have a solution that has worked with your kiddos!

Just keep swimming!

A Few Highlights From CampedUP

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…

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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!

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decorating crowns

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.

Marvel

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.

super heroes

The superheroes truly connected with the kids. So amazing 🙂

That night, Sonya transformed into “Super Sonya!” Protector of her toys.

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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.

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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:

https://www.gofundme.com/manage/sonya039s-fourth-birthday

Sonya Loves Her New Cochlear Implant Charms!

While perusing Etsy for cute cochlear implant accessories for Sonya, I came across Hayleigh’s Cherished Charms. In case you haven’t encountered her, Hayleigh Scott  designs little charms and jewels for hearing aids and cochlear implants. She has a gazillion designs, from tube twists to decorate the wire in between the coil and processor, to tube treasures, which decorate the tube between the hearing aid or processor and ear mold, and all types of charms which can stick on the processors, the coils, etc.

owl charms

I purchased two owl charms for Sonya, who loves owls and who has an imaginary owl friend. I did this because I thought they were sweet and also because I recently lost Sonya’s cherished owl barrette. “What about Little Hootie?!” Sonya demands each morning before leaving for camp. Hayleigh’s Cherished Charms seemed like a good replacement.

I received the custom ordered charms in just a couple days. Did I mention that they cost only $2.99 per charm? The Cochlear Bling charms attach to Sonya’s processors by way of adhesive. The charms are sturdy and seem likely to hold up to a toddler’s abuse.

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I was so impressed that I contacted Hayleigh the shop owner to thank her, and learned that she started this business when she was just TEN. Hayleigh, who has worn hearing aid since she was 18 months old, started designing charms at just five years of age. Today, she is a college.

Not only is she a child business phenom, she is very generous. Hayleigh donates 10 percent of her proceeds to organizations which support the deaf and hard of hearing.

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Hayleigh and Oticon President Peer Lauritsen in 2010 when she was honored at the 2010 Oticon Focus on People Awards (given to young people who are working to eliminate negative stereotypes).

She was super kind and generous with her time and let me interview her via email:

What inspired you to start Hayleigh’s Cherished Charms?

When I was in preschool I went to a school for the deaf and hard of hearing. I noticed how my parents, as well as many other parents, grew their children’s hair out to cover their ears. It was strange to me that a community of people who were so alike were still ashamed to even show each other their “disability” or hearing device to each other let alone to strangers. I did not like this and thought that we should show off our hearing devices by decorating them.

When I was five, I started drawing pictures of charms for hearing aids. My mom didn’t understand the drawings at first. It took time for me to interpret them to her, but by the time I was eight years old, we had created them and started the process of getting a patent for my designs. I did research to ensure that nothing like this existed for kids and adults. With my parents help, I applied for a patent from the U.S. Patent Office for my designs.

I opened an online store Hayleigh’s Cherished Charms (which has hundreds of items not on Etsy), as well as my Etsy site a few later.

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Hayleigh and her twin sister Vienna and sister Sarah create “Sister Sets” together: bracelets and necklaces that compliment the charms. You can find them here.

Wow! I am so in awe of you! How do you manage to do all of this?!

My mom, dad and my sisters help me. My twin sister Vienna makes necklaces and my sister Sarah makes bracelets so that we can make “sister sets,” which are charms, bracelets and matching necklaces. My mom helps me paint the audiology displays and package things to be mailed and my dad often drives them to the post office.

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Where do you plan to take your business? 

I am looking to grow my business so that my designs can work with the growing diversity of hearing devices. This would allow me to service more people and impact more of the deaf and hard of hearing communities worldwide. There is also continual growth in development of new designs for each established product (Charms, Tube Twists/Cochlear Coils, and Tube Treasures/CI Bling).

I am definitely planning to purchase more of these cuties. Here are a few I am eyeing that I know Sonya would love:

Mermaid Friends

mermaid friend charms

Bob the Builder

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And of course, unicorns!

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Thank you, Hayleigh! You are amazing!!