December 2017 – Hearing Sonya Rose

Nine Ways to Incorporate Speech Therapy Into Playtime At Home

This post originally appeared in one of my favorite blogs about speech therapy, Language for the Playground. If you haven’t yet checked out this site, I would greatly recommend it. Especially the post on The Connection Between Language & Theory of Mind and Vocabulary Development for Children with Cochlear Implants.

In order to successfully integrate Sonya into our society, we need to implement many, many hours of hard work and discipline. While a percentage of Sonya’s success is based on the care she receives at the Center for Hearing and Communication in New York (where she receives her speech therapy), the most important factor determining how Sonya fares will be dependent on the work we do at home.

It was a frustrating position to be in, as I was the least educated/skilled person in this arena, and yet, the greatest weight was placed on me – especially as my husband works and I am at home. I took it upon myself to learn the tactics used by our speech therapists and implement them at home. Here are some of the ways that we do so when playing with Sonya outside of speech therapy:

1. Give opportunities for your child to ask what they want. For young babies, if a favorite toy is out of reach, wait for her to vocalize that she wants that toy (even a grunt), before reaching for it and handing it to her. As Sonya got older, I would try to wait at least seven seconds for her to ‘use her words’. If she grunts and points at a toy, I simply say, “what is it you want? I don’t understand ‘ugh!’” [pause about seven seconds] and almost always, Sonya will realize that it is her turn to speak, so she will say, “Mama can I please have that toy?”

2. Imitate the sounds and facial expressions your baby makes.

3. Encourage your baby to use different vowels and speech sounds by linking sounds to toys and being consistent. For example, when we play with an airplane, we make the sound “ahh” and when we play with a car, we make the sound “beep beep.” The goal is for your child to associate certain toys with specific sounds to understand that some sounds convey more meaning than others. Now that Sonya is older, we work to ensure that she understands the real names for objects. She used to call fire engines “wee-wahs” but we would correct her and say, “Oh you mean fire engine? Yep! There goes a fire engine!”

4. Encourage your child to stop and listen to environmental sounds. When the phone rings, doorbell chimes or tea kettle whistles, we stop what we are doing and point to our ears. Encouraging your child to stop and listen to the sound – and then identify what the sound is that we are hearing.

5. Narrate what is happening throughout the day. Use simple language to describe the events as they are happening. As I prepare Sonya’s dinner, I will tell her what I am doing. “Now, I am cutting up the apple! Chop! Chop! goes the knife.” This was a tough one for me as I am naturally an introvert, but overtime it became a habit.

6. Sing. We sing all day long. I try to add gestures to songs to keep it interesting/entertaining. Sonya LOVES to sing.

7. Read! When Sonya was very little, we chose books that had large pictures and were not too detailed. We would describe the pictures. Now, Sonya is almost three and we read early reader books. I hold the book and read the words, so that she can’t see the pictures. I ask her to repeat what I just said, and once she does this, I reward her by showing her the pictures. Kids with hearing loss tend to be very visual, so they can get lost in pictures and not really listen to the words. We find this really helps her to listen carefully.

8. Correct your child when they make mistakes. When Sonya says “I need primacy!” I respond with “Oh, you need your priVAcy? Ok, I’ll make sure to give you some privacy.” (Emphasis on the part of the word she misspoke). I don’t force her to say words correctly, but I do make sure to repeat the word a few times afterward so she really hears the right way to say it.

9. Go over language goals at night with your partner so that you are on the same page. Our speech therapist prints out notes following each of our sessions and as consistently as possible, my husband and I discuss these notes at night over dinner, to ensure he understands what Sonya is working on as well.

Sonya is now three years old and is in a mainstream preschool in New York City. We are endlessly delighted in the progress she has made these past few years and are particularly pleased to see her relate with her hearing peers in the same manner as any three year old would.

Above all, I feel like my relationship with Sonya is very strong because of the time we have spent together developing her speech and listening skills. We have a long way to go still, but as they say it’s the journey not the destination.

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.

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.

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.

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

I ordered Sonya the custom MadebyToriC doll through Etsy and it was even sweeter than I imagined! Tori was lovely to work with. I gave her details about Sonya’s hair, the colors of her processors and I received it in a week’s time. Impressive, Right??!!! She captured Sonya’s pigtails and RubyBands headband! This is such a lovely gift. I can’t WAIT to give it to her next week for Hanukkah.

Another Etsy find: A baby doll with cochlear implants (from LeSoZo Arts). Looks like there aren’t too many in stock though, so I would order one soon!

Sophie’s Tales Overcoming Obstacles is a book about Sophie, a little dog with hearing loss who wears cochlear implants. The book comes along with an adorable stuffed Sophie with bilateral cochlear implants. You can have the book inscribed to your child as well.

Harmony Hears a Hoot is a sweet children’s book about a young owl named Harmony who attends her first day of school. I love how proud Harmony is of her uniqueness as well as how she advocates for herself by teaching her schoolmates and teacher about how she hears. Author Fara Augustover doubles as a speech pathologist. You can buy the crochet owl as a companion to the book on the author’s website.

Pikachu is even cuter with cochlear implants, agree?!

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.

A Conversation About Hearing Loss and Education with CHC’s Dana Selznick

I don’t know what we would do without Dana Selznick in our lives. Dana, who currently serves as Education Specialist at the Center for Hearing and Communication, provides information and guidance so that parents can make informed decisions about their children’s hearing health care. She has helped us navigate Early Intervention (EI), the Committee on Preschool Education (CPSE), the Deaf Infant Program (DIP), and the private nursery school admissions process in New York City. She also co-founded Camped Up, an amazing camp for kids with hearing loss. Dana was gracious enough to talk to us about the work she does and about advocating for children with hearing loss in the classroom:

What are the most important factors parents should look for when choosing a school for their child with hearing loss?

First and foremost, every single child is different. What works for one child, might not work for another. This can be hard for parents to grasp. Parents read the same blogs. They talk to each other during group therapy. They compare their children to their friend’s kids. It’s natural to do so. But parents must remember: what works for one child will not necessarily work for their own.

Dana has many fun ways of encouraging letter recognition. Recently she had Sonya create an “I Spy” jar, filled with rice and small letter beads. Once the jar is filled we can look for the letters, identifying their name and sound.

It’s important to Look for teachers who recognize a child with hearing loss needs accommodations BUT who also treats that child as any other in the classroom in terms of expectations for success. This is a tricky balance. Some schools are so focused on the accommodations and ensuring they have all of the things a student might need, they forget to push the student. They fail to challenge them. This is a major disservice to any child.

Also, pay attention to the school environment -in particular the acoustics. It’s an advantage when you walk into a classroom and see carpeting on the floor and stoppers on chairs, all of which help to lower sound level in the classroom. That said, this is something we can fix. I work closely with a number of schools in Manhattan and help to ensure their classrooms are in good shape from an acoustics stand point.

Now I will reiterate again the fact that every child is unique and has different needs, typically, I do find that schools with some structure to be beneficial to children with hearing loss. Some schools are free-play-based with little structure. Their philosophy is that as they child grows and develops, the child is encouraged to explore on their own and figure out who they are. For kids with hearing loss, however, we want schools that will work with a child’s speech therapist to pull and encourage language. To hold verbal communication above the importance of free play all day.

What kinds of questions should a parent ask when interviewing a school?

Parents should ask schools how they differentiate for their students. They can usually learn this by looking at the school’s philosophy. Schools that believe in an individualized education plan, that describe every child as an individual with their own unique needs, typically will adhere to a philosophy we can work with. When you are on a school tour, listen to how the admissions team talks about their school. Do they describe their kids as unique individuals? Pay attention to the art that hangs on the walls. Every child’s work is going to be different. How does the school reward that?

What advice do you think is most important for parents when working with their kids’ teachers?

Start the year off by introducing your child and make their listening needs known to the teachers. Present your child’s teachers with your child’s hearing background. Make sure the teachers understand how to use any assistive listening devices needed such as an FM unit, and ensure that they know basic troubleshooting for equipment. Make sure the teachers feel comfortable using this equipment.

Provide teachers with a professional that they can speak to if they have any questions. Often, teachers don’t feel as comfortable asking questions to the parents as they would a professional.

Be involved in any way you can! Have ongoing meetings with your child’s teachers, beyond parent-teacher conference time. Ideally, you want to stay involved so that you are not just contacting the school when something goes wrong. Whether you are involved in the PTA, volunteer for class field trips or volunteer remotely via email (lots of schools have volunteer opportunities for working parents), you can connect with your child’s teachers in a more casual setting and can get a better sense of how your child is doing in the classroom. You need to trust your educators and your therapists, but when you are there first hand, you really will know what is going on and can contribute to your child’s IEP meeting in a more valuable way, which will benefit your child. Ultimately, by being involved you are ensuring that the school knows you, knows your child and brings you all together as a team.

Additionally, I would encourage parents to look at some fact sheets we developed to address this exact topic. They include:

Tips for Teachers of Children with Hearing Loss fact sheet

Tips for Teachers of Preschooler with Hearing Loss fact sheet

For people considering being a hearing loss education specialist, what advice would you give?

You can’t always have a plan. It will change minute to minute. I could be here sitting with a student and I can have a plan for how the whole activity is going to go and realize it is just not working and I need to pull something else out. This comes with experience. It is hard your first few years of teaching to always have something on the back burner to be able to do. But you will need it. Trust me.

Many teachers of the Deaf are itinerant teachers who go from school to school, working with different kids in mainstream classrooms. I did this for many years before working at CHC and I loved being able to connect to the students on a different level than their classroom teacher. That being said, it can also be a very difficult position. You have to be able to adapt to each school’s philosophy. To each child and to each family you are working with. You also have to keep in mind that you are the expert. You can walk into a classroom and the teacher has been teaching for 40 years, but they have never taught a child with hearing loss. You are the expert. You need to learn when to push back and when to pick your battles.

A significant part of your job is working with children who have hearing loss on literacy skills. Why is it so important that kids with hearing loss work on literacy skills early on?

I love literacy! A big piece of it is I grew up with learning disabilities. I had trouble learning to read. I didn’t start reading until second grade. My parents are often amused by the fact that I am now teaching three-year-olds to read because I wasn’t reading until quite late. I had a very difficult time with it. I believe this has helped me understand that every child learns differently and it is important to find the right strategy for each individual student. It’s a known fact that kids with hearing loss struggle more with reading than their hearing peers. I truly believe that early exposure to reading can only help. To be clear, we aren’t pushing them or grading them, we are simply exposing them. So when they start to hear letters and letter sounds in school later, it will not be the first time they are hearing it.

As an educator, I enjoy giving support to older children who needs remedial work, but if we can get them to read sooner and not feel that sense of struggle with reading, it’s so worth it. These kids have enough challenges on their plate, be it listening, dealing with background noise, explaining their hearing loss to their friends and teachers, why not give them a little foundation now so that they are confident? So that they will feel better in the classroom setting? That they won’t be nervous or embarrassed that they are pronouncing a letter sound wrong.

A bit verklempt now! I know what a difference this has already made to Sonya. She can be hesitant to try new activities, so giving her a foundation in reading early on I know will make a huge difference.

Thank you, Dana, for sharing such incredible advice and insight!

P.s. I wrote about Sonya’s experience at Dana’s amazing Camped Up, a camp for kids with hearing loss here.

Dana’s colleague Liz Ying also recently shared her thoughts on speech therapy for kids with cochlear implants here.

How Does the N7 Compare to the N6?

Two-and-a-half years ago, Sonya was implanted with Cochlear’s newest device: two Nucleus 6 processors. At the time, we were impressed with their size (slightly sleeker than the ABs), but overall felt the technology surrounding them was a bit clunky and didn’t seem intended for pediatric use.

Now we covet the Nucleus 7, which was released in August 2017. With features such as the “Hearing Tracker” which records the time the sound processor coil is not attached to your head to a “Find My Processor” feature, which uses Location Services to help determine the location of a lost processor, the latest product from Cochlear seems amazing – and perfect for a toddler-aged Cochlear implant user.

But how does it stack up to the older model? Since I can’t hear for myself, I decided to ask around on Facebook whether anyone who received the upgrade would be interested in giving me some feedback a few months into wearing them.

At two years old, Vanessa Robinson was diagnosed with profound hearing loss. She grew up wearing hearing aids. Now a young mom in her mid 30s, Vanessa decided to make a big change. “I want to be a special education teacher,” she says. “When you teach special ed for elementary-aged kids, you have to teach phonics and phonetics. I couldn’t hear the students well enough. It was then that I decided to have the surgery.”

She received her first implant in May 2017 (she wears the Cochlear Nucleus 6 on her left ear); and received her second implant in September 2017. Since Cochlear had just released its newest processor in August, she qualified to receive the Cochlear Nucleus 7 in her right ear.

“They are exactly the same sound wise to me,” she says. “But I love the N7 because of its Bluetooth capabilities. With the N6, you had to sync to a phone clip or speaker that was bluetooth. The phone clip was the ‘bridge’ between the cochlear implant and the device. With the N7 you sync it directly to the phone without the need of a third device.”

Vanessa also mentioned that she felt the N7 was more comfortable to wear than the N6. “It’s lighter and thinner, so it rests on your head easier. The N6 is heavy and causes blisters on the front part of my ears where the hook sits if I wear it for long periods of time.”

As for how her hearing has improved post-implants, “It’s not an overnight miracle, but I’m thankful I did it.”

She adds, “the first few weeks following my surgery, I was so angry. All I could hear were what I imagined Morse code to sound like. Dots or the ‘s’ sound with beeps. I was so disappointed that I had gone through all of this for nothing,” she says. “But by week three, I started noticing stuff like the fans whirring and the blinkers on my car blinking, and my dogs nails clicking as they walk across our wooden floors. Five weeks post-implantation speech started coming in.”

Vanessa 1 — Vanessa with Sean Berdy from the show “Switched at Birth”

“Before the surgery, I had about 13 percent speech recognition, meaning I could hear speech 13 percent of the time on average, according to my audiological exams,” says Vanessa. “Now four months post activation, I have 65 percent speech recognition. I can hear music, radio commercials! (that’s a first for me) and, above all, the sound of my three-year-old son talking to me. It’s so crazy how well he talks! I never really ‘heard’ him before as he didn’t understand that he had to face me when talking so that I could read his lips.”

Thank you, Vanessa for sharing your experience with the N7!

Share this:

What inspired you to start HeadbandsforSophia?

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

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

How long do you spend on each headband?

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

Any other aspects of your work that you find interesting?

Are you surprised by the popularity of HeadbandsforSophia?

Share this:

Share this:

What are the most important factors parents should look for when choosing a school for their child with hearing loss?

What kinds of questions should a parent ask when interviewing a school?

What advice do you think is most important for parents when working with their kids’ teachers?

For people considering being a hearing loss education specialist, what advice would you give?

A significant part of your job is working with children who have hearing loss on literacy skills. Why is it so important that kids with hearing loss work on literacy skills early on?

A bit verklempt now! I know what a difference this has already made to Sonya. She can be hesitant to try new activities, so giving her a foundation in reading early on I know will make a huge difference.

Thank you, Dana, for sharing such incredible advice and insight!

Share this:

Share this: