Why Carrier Screening Is So Important to Us

When I was just ten weeks pregnant, I received a call from my doctor. She had information regarding our genetic results from our Counsyl test. I didn’t realize it at the time, but this call would shape my world. At that moment, we learned that both Yan and I were carriers of a non-syndromic hearing loss gene called Connexin 26. This meant there was a one-in-four chance that our future child (who we didn’t even know yet was a girl!) could have hearing loss.

Following the call, I locked myself in the bathroom stall at work and sobbed. I didn’t know how to process this information. To have a child who was deaf – what would that mean? What would their life be like? Would they even be a part of our society?

When we told our family their reactions were all over the board. Some were angry: “Why the unnecessary testing?” They demanded. “This is putting unnecessary stress on Missy at a critical time in her pregnancy!” As the weeks continued, however, a cloud of acceptance settled. I decided to remain in denial. My focus was to stay healthy for me and the baby – that was it. Yan, on the other hand, and our family, took action. Since they had information, they were going to do what they could to ensure that in the event our child was born with hearing loss, we would be able to take the next necessary steps and swiftly.

Having carrier screening during pregnancy (ideally before, but in our case during) was a game changer for our daughter Sonya. After a stress-free birth, free of complications (thank God), Sonya didn’t pass her hearing screen at the hospital. I knew she was deaf. A couple weeks later, we went to NYU audiology where profound hearing loss was diagnosed in both ears. Had we not had this carrier screening done, we might have followed a prominent Ear Nose and Throat doctor’s advice – which was to wait it out a couple months – over the advice of a young audiologist, who urged us to get Sonya hearing aids and to meet with NYU’s Cochlear Implant Center. We are so thankful that this information was available to us so that we could make the informed choice that was right for us.

This is why we collaborated with Counsyl to tell our story in the video above. We believe that expanded carrier screening has benefits that far outweigh any downsides of testing, including the fear of the unknown. Many parents don’t necessarily want to know – but knowledge is power and the ability to act for your child’s best interests day one, is a critical advantage. We weren’t directly compensated for this video, but Counsyl did make a generous donation to the Center for Hearing and Communication, where Sonya receives speech therapy and audiological services.

Thank you, Counsyl!

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.

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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.

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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.

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

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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.

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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?

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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.”

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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.”

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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!  

 

 

 

The Apple Watch is a Great Hearing Loss Tool!

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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:

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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.

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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.

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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.

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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):

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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.

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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.

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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! 🙂

ADA, IDEA and Section 504: What Parents of Children with Hearing Loss Should Know

Parents of kids with special needs should know their rights under ADA. Check out key aspects of the law pertaining to hearing loss here!:

When I was a little girl, I would often come downstairs to see my mom, Barbara Mandel, tutoring a child with special needs. She obtained her masters in special education while I was in elementary school. By the time I entered high school, my mom had developed a thriving business testing students from high school to post-secondary for disabilities and, when necessary, providing those students with accommodations. The idea that we all gather and express information in our own unique ways, was preached to me from an early age

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Today, I have a three-year-old daughter who was born deaf and who wears bilateral cochlear implants. Technically, she is considered a child with special needs, and I have gone back to my mom more than a few times to understand what rights Sonya has under US disabilities law, including: ADA – the Americans with Disabilities ActIDEA – The Individuals with Disabilities Act and Section 504 of the Rehabilitation Act. While I haven’t had to use this information yet, I am sure I one day will and I thought other parents in similar shoes would benefit greatly from knowing their children’s legal rights as well.

Can you explain what IDEA is and who it protects?
IDEA stands for The Individuals with Disabilities Education Act. It is a federal law that governs early intervention, special education and related services for disabled schoolchildren K-12. IDEA requires that a public school create an Individualized Education Plan (IEP) for each child with special needs. IEPs are developed by a designated educational team with the goal of tailoring a child’s educational program to meet his or her individualized needs so that they can find success in the K-12 education system.

And what is Section 504 and who does it protect?
Section 504 is a civil rights law that protects individuals from discrimination based on their disability in connection with any public or private program or activity receiving federal financial assistance. A 504 Plan is developed when a K-12 student needs certain accommodations and modifications to the physical space of the school or the learning environment (as opposed to the educational program itself). Section 504 expands beyond K-12 and protects post-secondary students with disabilities as well. To note, Section 504 states that post-secondary students must have the opportunity to compete with their non-disabled peers (as opposed to IDEA which promotes finding success in a K-12 educational environment, A post-secondary 504 Plan ensures equal opportunity only).

What is the ADA and who does it protect? 
ADA stands for the Americans with Disabilities Act. ADA protects the rights of all Americans who have mental and/or physical medical conditions, including hearing loss.

How does ADA apply to children who are deaf or hard of hearing?
For children (ages 3-21) with hearing loss, Titles II and III of ADA are most relevant. Title II requires public entities (including public schools) to ensure that communication access is as effective for children with hearing loss as it is for their typically hearing peers. Upon request, schools have to provide the student with hearing loss auxiliary aids or services. Title III expands ADA to apply to almost any place open to the public including private schools (with the exception of private clubs or religious institutions).

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What do auxiliary aids and services for students with hearing loss entail under ADA?
This means that students who request it can receive qualified interpreters, note takers, an exchange of written materials such as notes, computer-aided transcription services (“CART”), assistive listening systems such as an FM system, accessible electronic and information technology and captioning.

Under ADA the person with hearing loss gets “primary consideration” when requesting an aid or service.
”Primary consideration” means it’s up to the person with hearing loss, not the school, to decide what services or aids are most appropriate. The school must honor the choice of the student unless they can prove that their choice is as effective and will give the student equal access.

And what does it mean that auxiliary aids and services need to be provided in a timely manner? What is considered “timely”?
Once the student has indicated a need for a service or aid, the public school district must provide it as soon as possible, even if the evaluation and IEP process is pending.

What about a student’s privacy?
Under ADA, privacy of the student with the disability must be protecetd. Services should not disclose the nature and extent of an individual’s disability. So while students in your child’s class will see that a child is using an FM system, it is illegal for the teacher to call out your child’s hearing loss.

My mom sent me a very cool chart at understood.org (I can’t recommend this site enough as  resource for parents!) that gives a nice overview of the federal laws and how they apply to disabilities:

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I hope this is helpful to the American parents out there reading!! Feel free to leave questions in the comments section. I’ll have my mom respond to you directly!

A Q&A with Renowned Speech Therapist Liz Ying

Liz-Ying-SLP-NYC-Deaf-Therapist-225x300.jpgFor those who have hearing loss, Elizabeth “Liz” Ying is pretty much a celebrity. She is widely recognized as being at the top of her field. For 40 years, she has been a pioneer in auditory-based oral speech and language therapy for adults and children with cochlear implants. According to the Center for Hearing and Communication, where she currently serves as Co-Director of the Shelly and Steven Einhorn Auditory and Communication Centers, Liz has transformed the lives of thousands of families, including ours.

It goes without saying that we jumped at the opportunity to work with her. Sonya started working with Liz at just five months, and we continue to see her today. Liz graciously agreed to participate in the below Q&A, which I hope parents and speech therapists who follow this blog will find helpful!

If you have a baby with hearing loss, what are the critical factors for long term success?
Given that I am an advocate for listening and spoken language, my feeling is you should (1) pursue the best audiological services to ensure your child has access to every drop of residual hearing possible and that they are getting the right amplification. (2) Commit to ongoing speech therapy intervention with a family-centered program. I can be the most experienced therapist in the world, but if the parents don’t convey the same strategies and practices at home, their child is not likely to progress. (3) Embed the child’s listening and language needs within everyday life. Working hand-in-hand with speech therapists and taking these strategies with you in your child’s daily life are the keys to success.

What should parents look for when hiring a speech therapist for their child?
You want to find someone who has theoretical training for techniques in listening and spoken language and who recognizes the developmental trajectory of language development.

Also, a good clinician will love kids! They will have a comprehensive approach and understand that a child is a child first. Speech therapy with children is play with a purpose. A good clinician will let the child play, but will also ensure that play is productive.

Lastly, a good speech therapist will be flexible. You can go into a session with a set lesson plan, but if the kid wants to do something totally different, you need to be flexible enough to switch it up but still accomplish your goals. Someone who is rigid is not going to be a great fit for working with children.

How is speech therapy for someone who got cochlear implants later in life different from a child who was implanted as a baby? 
On one hand, it’s easier for adults. An adult has a language system already developed. It can also be more difficult. An adult will remember what sound used to be compared to what it is with a cochlear implant. Adults tell me the sound with the cochlear implant is tinny and that they can’t hear with it. Just like with a child, we must work to teach them how to listen with the new device.

And how do you do that? 
Let’s say you have a person who works in an office setting. This person has managed their life through texts and email. They avoided conversational aspects in their profession. In this situation, you identify the immediate need – which is learning to listen for vocabulary in an office-setting. That’s where you start. Soon, the client will start seeing success within this aspect of their life.

At the Center for Hearing and Communication, we offer a “short term” therapy for such clients of 12 weeks, followed by an assessment. At the end of the 12 weeks, we discuss whether this has been beneficial and whether they want to continue therapy.

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For people considering being a speech therapist for children with hearing loss, what advice would you give? 
I would encourage them to understand that for children, especially babies, born with hearing loss – anything is possible. Unlike other limitations, hearing loss is an access issue. Once you provide the right technology and get the family on board to reinforce listening and language outside of the clinician’s office, kids can bridge the gap much earlier than ever before.

Sadly, a typical student in speech language pathology will get little exposure to kids with hearing loss. Most of the time, when I introduce this part of the profession to students I am met with great enthusiasm and surprise that they hadn’t encountered this area in their studies beforehand. And it is a very exciting field! You get every parameter you were trained to look at – i.e. the voice, articulation, language issues, and you can make a very significant difference in the outcome of many children.

Any other words of wisdom for parents and speech therapists who are reading this? 
No matter how you look at it, a person with hearing loss may not receive a 1:1 signal. They may not get a message in it’s entirety. I feel that literacy is a critical component to successful auditory-based speech therapy. As soon as your child is born, start reading. Once the child has some language and understanding, use books even more. And refrain from paraphrasing and making up stories. Use the vocabulary in the books because usually it is not vocabulary you would normally use.  My sessions are always organized around reading a story. I first have the child complete a task and the task leads us to a story.

“Literacy is a critical component to successful auditory-based speech therapy.” – Elizabeth Ying, Co-Director of the Shelly and Steven Einhorn Auditory and Communication Centers, Center for Hearing and Communication

Like today! You asked Sonya to repeat a sentence from a book, and she repeated it but also missed part of the sentence, right?
Yes! We need to teach Sonya – and other kids like her – to fill in those missing pieces. And the way to do that is to enhance her vocabulary through literacy. Once Sonya hears a word she knows, her brain will immediately pull up associated words. For example, if you say “dog” her brain will listen for associated words, like “leash” or “bone.” This is how the brain works to fill in missing information.

Reading expanded my world as a hearing person. I grew up in Jim Crow South. I didn’t have exposure to a lot of things. But I did through books! Once I learned to read, I could go anywhere. It’s the same for our kids with hearing loss.

Thank you, Liz for all you have done for Sonya and thank you for participating in this Q&A! I know other parents and clinicians will greatly appreciate your insight and experience!  

 

Is There a Connection Between Hearing Loss and a Fear of Failure?

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For three years now I have sat in on countless speech therapy sessions with Sonya. Implanted with cochlear devices at seven months, Sonya’s speech emerged, slowly at first, and then through bursts. Tracking her developmental leaps on this blog has been a fascinating endeavor and I hope other parents who have children like Sonya and who go the route of cochlear implants will get a glimpse of their child’s future through our experience.

While speech has emerged and while Sonya has a sweet, silly and bubbly personality at three years old, I have noticed that she remains very cautious when it comes to approaching new tasks. As we work with her speech therapists, Sonya will rarely participate in an activity until she feels she understands it. She seems afraid of trying something new and of being wrong.

According to Sonya’s speech team, this is not an uncommon trait among children with hearing loss. Given the sheer number of audiological tests, speech and listening evaluations and mappings (which require Sonya to respond when presented with noise),  kids with hearing loss often approach new tasks with trepidation. They are working so hard to please that it’s no wonder Sonya and kids like her are afraid to be wrong.

Of course, as a child with hearing loss, Sonya must learn how to cope with the prospect of failure. She will need to fail in order to grow. One of the hardest things as a parent I have observed is stepping back and letting Sonya experience failure. It started as early as her first steps (which I wrote about here).

I also recognize that given Sonya has hearing loss we have thin margins to work with in terms of both protecting Sonya and pushing Sonya to experiment and learn from her mistakes. But how does one teach the importance of failure?

According to a May 2016 Stanford study, the way children perceive “being smart” was related to how their parents reacted toward failure. The more parents believed that failure is debilitating, the more likely children became concerned with their grades rather than of learning and improvement.

Seeing Sonya’s development, I can’t help but recall my own fears as a child. As a kid, I was shy. So shy I remember being at a family function and being introduced as “the cousin who doesn’t talk.” For me, this fear of speaking was absolutely related to a fear of failure. If I didn’t talk, I wouldn’t say anything that would be wrong or potentially embarrassing.

Much to my parents’ surprise, I decided to study abroad in high school. I lived with a French family in a quaint little town of 4,000 people called Espalion, France. I suddenly was immersed in a language I hadn’t mastered and I was quite literally the town moron. I remember people laughing because I kept saying “je suis excitée” when I was excited about something (not realizing the verb “exciter” means sexually aroused in French). Yep. It was a great lesson in failure. And I survived it.

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A reunion with my French host family in 2016. I adore these wonderful people and am so glad they met Sonya!!

This experience brought me out of my shell in a way I never expected.

Now, I don’t think Sonya is shy at all. Perhaps it is the years of socializing through speech therapy, or perhaps it’s her temperament (she certainly takes after my mom and mother-in-law in terms of being social). But I do worry about how cautious she is. I hope we will be able to show her that she can learn from her inevitable struggles or setbacks. That failure can be viewed as growth — as long as she chooses to learns from it.

Oh by the way, here is Sonya in her halloween costume 🙂

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Taking a Listening Break

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As Sonya and I stroll down West End Avenue weekday mornings, we chat. I use the Roger Phonak Touchscreen Mic so that she hears me above the noise of the traffic and the constant construction. We play “I Spy,” we count the number of dogs being walked by dog walkers (we once counted 15!) and we sing. Last week, however, I realized that Sonya was not listening. At three, she now knows how to take off her coils so that she can tune me and the rest of the New York noise, out.

As soon as I realized it, I stopped the stroller, and angrily pointed to the spot two inches above her ear where her coils should be placed. Sonya simply looked at me with a serious expression and shook her head, “No mama! It’s too loud!” I tried to put them on myself (which was NOT the right approach) and in the end, we walked the rest of the way in silence.

Upon entering Sonya’s classroom, the coils were back on her head. Sonya was ready to play and learn.

Interestingly, the same thing happened on our walk home that day. Sonya relayed some highlights of her day and sang her a new song: “this land is my land, this land is your land, from the East Side to the West Side, children gather to play together, this land was made for you and me!” but once we reached 75th street, which also happens to be where ConEd is excavating the sidewalk with jackhammers, Sonya decided enough was enough. She needed a listening break. “Mama can I take off my CIs?” she asked me sweetly.

I mean, how can I argue with that?

According to Jane Madell, a pediatric audiologist and speech language pathologist and editor at Hearing Health & Technology Matters, children with hearing loss often come home more tired than their peers. According to Madell, research has demonstrated a link between listening in an environment with a lot of competing noise and stress. Overall, children with hearing loss must use more effort to detect, process and understand speech compared to their peers with normal hearing. No wonder Sonya can get so tired after traveling noisy New York streets and after her morning at school!

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Children with hearing loss need to take listening breaks after a long day. Also, moms of kids with hearing loss need a shot of scotch from time to time 🙂

Madell points out that teachers and families of children with hearing loss need to be educated as to the link between listening with hearing loss and fatigue so that they can offer listening breaks when needed. Using assistive technology (such as an FM system or microphone) will help, but weaving listening breaks throughout the day is also an important technique to help the child regroup and get ready to listen and learn again.

In addition to our walks to and from school, Sonya removes her CIs before her bath (as hard as we tried, she doesn’t like them on during this time). She also removes them for naps and at night time. There are other times of day when Sonya will remove her CIs because she is frustrated. This used to concern me, but I am now starting to realize that her removing her CIs indicates that she needs some time to rest so that she can reenter the world of hearing.

I am curious as to how many other kids with CIs need listening breaks throughout the day? How do other parents build such breaks into their routine (and how do they ensure that the “break” stays a break and doesn’t extend longer?) Would love to hear your thoughts in the comment section below.

 

 

What It’s Like to be 13 and Have Cochlear Implants

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As a parent of a toddler with profound hearing loss, I often think about what Sonya’s life will be like in ten or twenty years. I recently had the pleasure of connecting with 13-year-old Davis James, who wears a hearing aid and cochlear implant. She was very generous to share her story and experience with me and the world. As a parent of a young child who was also born deaf, her honest responses and wise (beyond her years) perspective brings me so much insight and hope.

Can you discuss your hearing loss? When did you lose your hearing and when did you get implanted?
I was born deaf and I was implanted with a cochlear implant in one ear just before my third birthday. My hearing loss was a big blessing. There are so many new things that cochlear implant users have access to, whereas the hearing world does not.

Really? Like what?
For example, I’m able to listen to music secretly in class and not get in trouble for it. Another hilarious moment was when me and my friends didn’t do our homework for our language arts class. We had to be sent out in the hallway to finish it up and while we did, the teacher forgot to mute the FM unit and I could hear her go through the answers with the rest of the class. Of course, I shared the answers with my friends (although I did confess to the teacher afterward. Honesty is important!)

Another moment (a gross one) was when my teacher went to the bathroom with the FM unit…you definitely don’t wanna learn more about that!!

Haha! That’s so funny and gross!! Do you think you hear differently from your family or friends?
I have no idea how I hear differently. I do listen to music differently. I use a Phonak ComPilot and connect it to my phone with Bluetooth so I can listen to music wirelessly. My friends get so jealous (in a funny way) when I explain it. I was very happy that when I explained it to people, they really listened and understand how it works, really because we’re living in the age of technology.
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What challenges have you faced socially because of the implants (if any)?
I started school in a deaf/hard of hearing school. There I made lots of friends who were just like me. My best friend and I played soccer together (my dad was the coach).

When I was in second grade I transferred to a hearing school. At the mainstream school, I had to learn how to be friends with hearing people, and they had to learn what it’s like to be deaf and what I needed. Not being able to hear without the cochlear implants was equally epic and sometimes saddening (inability to understand, etc.) Socially I have faced problems as a result. A lot of times, I can’t comprehend what other people say in daily conversations. It tires me to have to turn up my hearing aid’s volume because whenever I turn it up, everything is louder. Restaurants and crowded places are the worst places to socialize. I can barely hear what other people say in conversations.

For real, I absolutely despise it when I can’t understand people unless they look at me (it’s easier when I can read their lips and listen at the same time). The bigger part of that was when I have to remind them. It is tiring! When people say things like “never mind” I feel ashamed for not being able to understand.

There are other challenging aspects, but the thing is, everyone has challenges. We learn to get through it despite our disabilities.

Do people treat you differently because of your CI and hearing aid?
I haven’t noticed so. It took me a long time to learn how to advocate for myself, though. I finally learned the day my hearing aid stopped working with the other Phonak products (like the FM system) and I had difficulty learning. I knew advocating for myself was the right path and as I progressed, I became a better advocate for myself and others.

How do you advocate for yourself?
I position myself in the classroom to optimize my hearing. I speak up when I don’t follow the discussion.

Do you do sign?
Before I was implanted I knew some sign and I learned a bit as I got older. Since the second grade, I haven’t done much signing as I have learned to communicate with hearing people.

“There are other challenging aspects, but the thing is, everyone has challenges. We learn to get through it despite our disabilities.” – Davis James, 13 

What is your favorite activity outside of school?
I played soccer for eight years, but quit when I started sixth grade because I wanted to focus on other interests. Right now, my favorite thing to do outside of school is definitely to play video games like Overwatch or Fortnite Battle Royale.

What’s your favorite subject?
Science and art.

Can you describe how you care for your CIs and hearing aid?
I care for my CIs as if they were an extension of myself. It’s pretty hilarious, I sometimes forget I am deaf because my CI is almost unnoticeable to myself. It was easy to get into the habit of taking it off, plugging in the batteries when I go to bed and taking them off for the shower. I also see an audiologist annually. I graduated from speech therapy in fourth grade since I was progressing very well.

Thank you, Davis so very much for sharing your story!! You inspire me and you are such a wonderful role model for our children!!  

P.s. if you are interested in how a CI sounds to someone who lost their hearing later in life, check out our prior post: How Does a Cochlear Implant Sound vs Normal Hearing? Barb Cole Shares Her Perspective