How To Talk To Your Child About Their Hearing Loss?

While driving back from an afternoon downtown at CHC where Sonya does individual speech therapy, reading/writing and group therapy; Sonya looked at me and asked, “Mom, why don’t you have CIs, but I do?”

I have long awaited this question. On one hand, I dreaded this moment because I¬† worried I wouldn’t answer it well. That I would be too emotional. That Sonya would be left confused or feel isolated.

But I looked forward to it too. Sonya, now three-and-a-half, is becoming increasingly self-aware. She wants to wear her hair a certain way, and is becoming more vocal about what she will and won’t put on her body each morning. Sonya now online shops with me! Lately, she has informed me that purple is no longer her favorite color. “Just pink, mommy!” (And she knows how much I hate that color ūüôā

IMG_5692
Sonya’s street style (note: Peppa Pig hair bands which can also double as bracelets)

“When you were born…” I began, “you couldn’t hear. Your ears weren’t working. That’s why you have CIs. They help you to hear! When I was born, my ears worked fine, so I didn’t need to get CIs.”

I paused as I awaited Sonya’s reaction. She simply shrugged her shoulders, and said “Oh yeah. That makes sense.”

I sighed with relief. But I realize, of course, this is only the beginning of this conversation.

For this reason, I am so grateful that we have such a strong network of families with children who also have hearing loss. Each week, Sonya gets to spend an hour with her friends at group speech therapy. She loves these children (as do we) and looks forward to seeing them. We also do playdates with their families. I always thought it was sweet that she enjoyed their company so much, but now am beginning to realize the critical importance of maintaining these friendships. These children are about Sonya’s age. They also wear hearing devices. As Sonya becomes more self-aware, she will recognize that while she may be the only child in her mainstream classroom with CIs, she is not alone.

IMG_4368
Sonya’s Group Therapy at CHC last Halloween!

CampedUP, a summer camp for children with hearing aids and cochlear implants, is another opportunity for Sonya to connect with other children with hearing loss. We are so looking forward to another summer at this wonderful camp. Last summer, Sonya (at just two years) started putting her processors and coils back on her head by herself after this camp. This year she will meet even more children from all backgrounds. I especially love the fact that the camp is of mixed ages. Older children mentor the younger ones. Sonya is no longer the youngest and will have younger children looking up to her, too!

image7
Sonya at CampedUP last summer

Additionally, I am so grateful for our friends (those of children with hearing loss and without). For parents out there reading this with young infants, I urge you to find other parents to connect to. Whether it be me (happy to respond to emails or hop on a call!) or someone closer to you, the value of having these relationships is just so important.

Has your child asked about their hearing loss? How did you respond? As we are early in our journey, I would love to hear more ways to talk about this with our kids and I am sure other readers would agree!

 

 

We Love HeadbandsforSophia! Check Out Their Newest Designs and Colors!

Recently, Sonya became opinionated about how I do her hair. For her first two years, we would simply not do anything and just put a headband around her head, or tie it up in a top knot with a Rubyband headband. We still love and wear Rubybands, but now that she is three and attends nursery school, Sonya sees other little girls sporting braids. “I want two braids!” she often demands in the morning (typically when we are already running 15 minutes behind schedule, of course!)

With a new hairstyle, came a need for new hair accessories that would hold her processors.¬† Luckily, a friend of mine told me about HeadBandsforSophia, beautiful and well-made headbands that we adore. I love the sweet and simple designs that seem to work with many of Sonya’s clothes. I especially love the fact that these headbands hold her processors in place behind her ears, and are perfect for when Sonya has to wear a hat or a helmet.

The newest design Dino Dash features seven distinct dinosaurs in emerald green, capri blue, silver gray, chestnut brown¬†and coral pink! It’s so refreshing that the designs are not gender specific.

dino dash

Of course, Sonya is particular to the bands featuring sparkles, in any color. I recently had the privilege of connecting with Erika Smith, the founder of HeadbandsforSophia.

IMG_5043
Erika Smith, founder of HeadbandsforSophia

What inspired you to start HeadbandsforSophia?

My daughter Sophia is the inspiration and namesake of my Etsy shop. She is the second of my three daughters. She was born profoundly deaf and was bilaterally implanted with Cochlear’s Nucleus 5 at twelve months.

Growing up, we always used some sort of homemade headband, hair rubber bands or wig tape for keeping her processors on. About two years ago, at age 5, she got very self-conscious and wanted to be able to wear pretty hair accessories like her friends in Kindergarten. Her old headbands were functional but not so cute. That was when I figured I needed to integrate function into fashion, and began sewing these elastic headbands. I designed these to keep the processor in place behind the ear, hopefully as good training for the day in the future when she wouldn’t need any retention aids. She started getting lots of compliments wearing these and it made her feel special.

Today, Sophia is nearly 8 and still wears them daily, especially because they let her run around and do somersaults and roll around on the floor. She plays soccer and does ballet. Mainstreamed children with hearing loss already deal with a lot of stressful situations at school, such as social interaction and listening fatigue — this is one less thing she has to worry about during her day.

IMG_20171210_142503_200.jpeg
Erika and her beautiful family!

What is your background? Did you have prior design training?

I have an undergraduate degree in Psychology and a MBA. The closest I’ve come to retail fashion was working in a children’s clothing store in the mall for a summer job. I remember that customers would call the store and specifically request me by name to put together gift sets, so maybe I do have a knack for picking out what customers like!

As for sewing, I’m a late bloomer. I’ve always had a sewing machine but could only sew a straight line, never mind anything with a pattern. Only after I started my shop and sewed headbands for six months straight, I made a mermaid costume (under duress) for my older daughter performing in summer stock. Nowadays, my other creative outlet is making cute bedding for our two guinea pigs.

Where do you get your materials and what goes into choosing your designs?

This is one of the most fun parts of the business, but also time consuming. At first, I only intended to feature Sophia’s personal choices, but I quickly expanded to include options for boys and wider range of ages. I try to add fresh new colors and prints to my shop every month.

Quality is really important to me. If the elastic is too thin, it doesn’t retain a good amount of tension and stretches out fast. My favorites are the elastics with an “oil” or “foil” metallic print like my classic silver polka dots on black shown in my shop picture, and of course, the glitter elastics. Because the glitter elastic is so strong it can take a little time to break in but it ends up being very durable. I offer a range of elastics so that customers can figure out what they like best.

Most of my ribbons are sourced from wholesale distributors in the US, but I recently started working with an overseas ribbon factor to custom print my new design. I’m proud to announce my new and exclusive “Dino Dash” print which comes in five colors and displays seven dinosaur oil-printed silhouettes.

How long do you spend on each headband?

I spend on average five-minutes on the actual production of each headband. I also spend time managing other aspects of the business, such as order processing and mailing, bookkeeping, keeping up listings on Etsy, and responding to questions, etc.

It’s eye-opening how far the cochlear implant network extends around the world, and how we share a similar experience as parents across so many cultures trying to keep cochlear implants on our children! – Erika Smith, Founder of HeadbandsforSophia

Do you only sell your pieces on Etsy? Do you have plans to grow?

As a made-to-order seller, I currently only sell on Etsy. It’s a great platform for reaching an international audience, and they have made my headbands very visible via Google search. However, I’m considering the idea of creating another online store separate from Etsy in 2018 and eventually adding other function and fun cochlear implant-related products.

My hope is that someday we won’t need headbands like these! The new all-in-one processors like Cochlear’s Kanso and MED-EL’s Rondo are the next wave of cochlear implant technology which may eliminate the need for behind-the-ear retention.

I am a stay-at-home mom and consider this as a part-time commitment. If demand increases, I may have to hire someone to help sew the headbands, but that would also mean an increase in cost, which I want to avoid. I wanted to price these competitively and fairly, since cochlear implants are already a huge expense for some families.

Any other aspects of your work that you find interesting? 

I really enjoy working with customers to experiment with different designs. Sometimes customers will want to try positioning the processor on the headband a different way, and I’m happy to oblige.

I ship worldwide and you would be surprised at how much time I spend processing international orders. I manually verify each address and print out custom labels. In the past, many international packages were lost or significantly delayed. Replacing an order meant sewing a whole new set of headbands and paying to re-ship at my expense, per my customer service policy. Fortunately, by taking more time to check addresses, I’ve been able to nearly eliminate this problem.

The farthest I’ve shipped to is Saudi Arabia. It’s eye-opening how far the cochlear implant network extends around the world, and how we share a similar experience as parents across so many cultures trying to keep cochlear implants on our children!

Are you surprised by the popularity of HeadbandsforSophia?

Absolutely. When I first started, I thought I would be lucky to sell about 10 headbands a month. I started it only as a hobby, wanting to help others find a solution, and thought it would be a good way to off-set the supply costs for making our own headbands. Things really took off about four months after I started, when I got a large order of a few hundred headbands from an early intervention program at a school for the deaf.

Thank you, Erika! We just love HeadbandsforSophia and you are an inspiration! Bonus! Get 10% off your order with the coupon code SONYAROSE. 

It’s Sonya in Crochet Doll Form! And Other Adorable Gifts Featuring Cochlear Implants

 

IMG_5020

IMG_5019

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.

baby doll with CIs

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.

peekachoo with implants

Pikachu is even cuter with cochlear implants, agree?!

Some other ideas:

An Apple Watch – Did you know they are great assistive listening devices? Also,
Unique earrings to adorn hearing aids.

P.s. Here is my last list of toys featuring cochlear implants.

 

 

The Apple Watch is a Great Hearing Loss Tool!

iwatch

Barb Cole received a cochlear implant just a couple years ago. She shared her experience with our readers, and promised to stay in touch. Recently, she reached out to tell me that she discovered a new and relatively inexpensive (well, when it comes to hearing loss technology) tool that has been really helpful: her Apple Watch!

Barb says her hearing loss consists of mostly high frequency sounds, which includes hearing birds chirping and the sound “s”. “I am able to hear some low frequency sounds. I have a Cochlear Hybrid Implant — processor type N6 — in my right year and a Resound Hearing Aid in my left.”

Barb currently owns the Apple Watch Series 3 (GPS + Cellular). It works in conjunction with her iPhone 6 and she uses iOS 11.

“The Apple Watch has become an important device that increases and improves my ability to function independently,” she says. “It helps me feel secure and safe in different environments.”

Here are some ways Barb has used her Apple Watch to help with her hearing loss:

vonbruno.jpg

Vonbruno Hearing Aid ($4.99) is an app that actually allows you to use the Apple Watch as a hearing aid! You simply plug in headphones and tap the “on” button. The app will amplify the sounds around you. It can amplify your voice in a microphone setting, and will increase the volume of something you might be listening to.

resound-2148447244-1510188990437.jpg

ReSound Smart App is another Apple Watch app that allows hearing aid users to fine-tune the sound captured by their devices. For example, when speaking with someone, they can use the app to block out all unimportant sounds.

sos iwatch

The Apple Watch can be used to call for assistance. If you long-press the side button, you can start a call with emergency services. The Apple Watch knows what country you are in and will dial the right number. Once the call has been made, the watch will send a message to your emergency contacts with a map of your location.

medical-id.jpg

The Apple Watch also serves medical ID bracelet. I find this particularly compelling given the fact that people with Cochlear implants cannot have an MRI (because of the magnets implanted in their heads). God forbid if something were to happen to Sonya I am thinking a medical ID bracelet informing emergency services of her implants is an extremely important accessory (and I imagine kids with CIs would much rather sport an Apple Watch than an old fashioned metal ID bracelet…)

Barb also mentioned the following apps, which can be downloaded to the iPhone (not Apple Watch):

ava-4119132091-1510435490167.jpg

Ava – 24/7 Accessible Life (Free) is built by a team of deaf and hearing people, Ava uses voice recognition technologies to show a real time, color-coded transcript of the discussion by leveraging the power of your friends’ smartphones, and learns to get better over time. Ava uses your microphone to hear and show you word for word what is said.

ear machine.jpg

EarMachine¬†¬†(Free) makes it easy to listen to the sounds you want to hear. EarMachine has a simple interface that allows you to adjust the sounds coming into your phone’s microphone (or ear buds, although that’s not possible if you have CIs, obviously).¬† Barb mentioned that she is considering buying big headphones (like these), which might work if you are wearing processors as well.

bose.jpeg

Barb says that the Apple Watch’s Message Center, Activity Center and Reminders (which helps with memory loss) have made her Apple Watch an invaluable assistive listening device and she holds it as important as her MiniMic 2+ and her Phone Clip.

Thank you so much Barb, for sharing this! Sonya may be too young for an Apple Watch this year, but I imagine parents of older kids with CIs and hearing aids will find this very useful!! (Also, I kinda just want one anyways so this is a great opportunity to justify buying one! ūüôā

Cute Hairstyles for Cochlear Implants

When Sonya was born, my mother-in-law jokingly told me that we should shave her hair at some point to ensure it grew back thick. It’s a Russian tradition, apparently. We didn’t follow her advice, but at three, Sonya’s hair is curly and a bit wild (just like her).

14504736_745434845609300_3083371229550215168_n(1)

As you can probably imagine, I struggle to tame her locks every morning and given time constraints we usually go one of two routes: A top knot or pig tails:

I am especially fond of the pig tails because they enable me to do her hair while she wears at least one processor. Top of head placement (and wrapping the hair around into a little bun) seems to work best as her hair doesn’t interfere with the placement of her coils about two inches above her ears.

IMG_4254
We succumb to bribing Sonya with her favorite TV show Creative Galaxy, so that she allows me to comb through her tangled curls in a somewhat timely manner.

I would love to try new hairstyles for Sonya, however. Here are some ideas I love, which I think could work with her cochlear implants.

a) BANGS. I would love her to sport bangs, but her hair might not be straight or thick enough. Plus, I recently did this to myself only for her to ask me “Mom, why did you do that to your hair!?”

b) BOB. Again, not sure Sonya’s hair would lend itself to this style, but a baby with a bob is just so sweet.

bob

c) BANGS IN ELASTIC + PIG TAILS. This is so cute and easy looking, and I think would work!

cute.jpg

d) BANDED PIGTAILS.

banded pigtails

e) FRENCH BRAID. There is no way Sonya would have the patience to sit through this (and I am probably not skilled enough) but I do love it.

French braid

f) CROWN BRAID. Again, probably not enough hair and questionable whether the implant coils would work. But maybe I could motivate her to sit still enough to try by bribing her with Moana…..

crown braid

In other news, I have recently discovered HeadbandsforSophia on Etsy, which sells adorable headbands that are narrower and elastic and might lend themselves to additional hairstyles. I just ordered these to try.

Would love to hear your input! Vote on your favorite style and I will try it on Sonya and post the result! Do you have another option I should consider? Please leave it in the comments section below!

P.s. We also love Rubybands and wear them constantly and I wrote about hats and other accessories here and here.

UPDATE:

IMG_4328.JPG
Sonya opted for two french braid pigtails with barettes and to my surprise she actually let me do this! Sometimes I need to give her a little more credit.

 

 

 

 

Fun Cochlear Implant Accessories for Summer

Sonya wears RubyBands Swim Band

Lately, Sonya has been loving her Ruby Bands cochlear implant swim head band. It has the same design as the other Ruby Band cochlear implant headbands, which we adore, but is made from swim suit fabric and the pockets are slightly larger to accommodate the waterproof sleeves. (Note – if you are going to use the headband with a swim hat, be sure to choose a back tie). Sonya is wearing the front tie option above. We will definitely be using this on our trip to Italy next week!

You might notice that we are no longer using the waterproof sleeves. I talked about our struggles with it here. The sleeves are just too bulky and huge – and they don’t fit when coupled with the compact batteries we use for Sonya. We decided that it was more important that Sonya hear comfortably when doing water activities rather than struggle with heavy equipment that she ultimately refuses to wear and winds up swimming without sound. So far (fingers crossed) we haven’t had any issues without the sleeves. The cochlear implants (Nucleus 6 in our case) is water resistant. Since her water activity is relatively light, we simply place the damp processors in our Zephyr dryer¬†overnight. They are fine the next morning.

In addition to the swim headband, Sonya has worn (and stained) her Polarn O. Pyret baseball cap. It fits snuggly on her head and keeps her processors in place on days when she just doesn’t feel like wearing a headband (and I just don’t feel like freaking out over a lost processor somewhere between our house and Central Park). Plus, she probably¬†thinks she looks as cool as I do in my Yankees cap ūüôā

IMG_1096IMG_1086IMG_1506

P.S. Some additional fashionable cochlear implant / hearing aid solutions and travel tips for kids and babies with cochlear implants and hearing aids. Also, check out the wonderful book Sonya is holding in her hand in the top picture above: Harmony Hears a Hoot . It was written by a speech pathologist and is a great resource for kids and parents on how to address hearing loss in a mainstream school setting. We love it!

 

Hearing Loss and Helmets

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 Рwith 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 :).

Fashionable Cochlear Implant Solutions (Part II)

img_1956.jpg

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.

We-Can-Do-It-Rosie-the-Riveter-Wallpaper-2-AB

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 ūüôā 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.

Fashionable Hearing Aid Solutions

One of the most challenging aspects of having a baby who wears hearing aids was how to keep them on her head! Like most babies, Sonya must put everything in her mouth. Hearing aids included.

It is critical that Sonya keep her aids on, however, for as much of the day as possible. We were left scratching our heads as to how this could be accomplished? It sometimes took up to five minutes just to get them on her only for her to quickly take them out and stick them in her mouth. Adorable, and yet extremely frustrating.

Our speech therapists and audiologists had the following suggestions:

Option 1: In our hearing aid kit provided by Early Intervention (EI) we received Phonak Leo the Lion kids clip, which is a cord that attaches¬†to the hearing aids and clips¬†on to the back of Sonya’s shirt. Sonya didn’t love the clip. She noticed the cords when she turned her head and immediately pulled at it. I also didn’t love the look of it. Bright green with a lion cartoon on the clip. Cute – but also drew attention to her hearing aids. The quality also seemed to be lacking a bit.

Option 2: Phonak Stick ‘n Stay hearing aid stickers. We also received a pack of 30 pairs of clear sticky pads, which hold the hearing aids to Sonya’s ears. I used these for a good month – and they seemed to help initially. However, once Sonya learned to¬†take them off, they lost their effectiveness as they were no longer sticky once removed. I also found the packaging frustrating to open and the stickers were time consuming to apply. The upside is this tape is a more sensitive solution for baby’s ears, leaving no residue and can be easily applied and removed. A good – but not perfect solution.

Option 3:¬†Pilot caps. I for the record thought Sonya looked like a cute little aviator in these baby pilot caps¬†we purchased at Hanna Anderson. Perfect for Spring, they held the hearing aids in place. She never bothered with them. Style-wise, they aren’t everyone’s cup of tea. My sister-in-law thought it looked like a swim cap. Nonetheless they worked. Polarn O. Pyret also sells a similar version.

IMG_0047

Option 4: Crochet baby headbands. By far my favorite. Sonya looks adorable with these vibrant headbands which are comfortable to wear and hold the hearing aids firmly in place. I bought a pack of 30 for $15 through Amazon Prime. We have one that matches pretty much every outfit Sonya owns. She gets tons of compliments when she wears them. Win-win!

IMG_3074

Option 5: With the summer months upon us, Sonya typically wears her sunhat everywhere we go Рand I have found this to be a great option as well. The best kind tie under the chin and have UV protection. Polarn O. Pyret makes a great one with an elastic band that holds the hat in place around the head and a slightly wider brim in the back to protect the shoulders and back. The hat also keeps her hearing aids in place without a problem.

IMG_0143

Do you have any other ideas? Feel free to let me know! I’ll be interested in hearing about any options that will work particularly well with Sonya’s new cochlear implants.