HEARING
UR WAY
The magazine for kids and teens with hearing loss
VERCOMINEGS BSTACL
LILY
SMART COOKIE FALL 2024
Fall 2024 / Volume 11, No. 3
HI FR M MEL!
4 Things We Love
Eva’s Bookshelf: Eva Sibling Spot: Evie & Mila
6 Overcoming Obstacles Featuring: Lily
8 Special Features
Sophie’s Spotlight: Liam & Jack Education Station: Ms. Keenan
10 Fun & Games
Dear Sophie: Addie
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Fresh Batch Ah, the smell of new school supplies, the feel of a first day of school outfit, and the hope of what a new school year holds. While it’s sad to leave summer behind, a fresh start is always welcome. What are your goals this school year? Mine is the completion of The BIG Book of Hearing Our Way, the book I have been working on to celebrate 10 years of Hearing Our Way magazine.
To write a book, you have to be one tough cookie, as days turn into months, writing and editing each page. But the feeling of a fresh batch of books in your hands? Nothing sweeter! What are you baking up this fall?
Know Your Ingredients One thing I noticed about this issue is that many of our featured kids included their hearing loss origins in their stories. Just as when you’re putting ingredients together for a batter of cookie dough, knowing the cause of your hearing loss can help you understand and make sense of it, and can even help others.
Lily in Overcoming Obstacles has been doing great work building resources for people with TMPRSS3, the gene associated with her hearing loss. In Education Station, Leila and Kiara raise awareness about the cause of their hearing losses: microtia. In Sibling Spot, even though Evie and Mila are twins, Evie has hearing loss caused by the Connexin 26 mutation, and Mila does not have hearing loss.
Things Mel Loves
Founder and Editor-in-Chief Melanie Paticoff Grossman, M.S.D.E. Magazine Design Peggy Nehmen, N-Kcreative.com With a helping paw from Maltipoo Sophie And special thanks to readers like you!
One of my favorite parts of this issue is Addie’s poem in Fun & Games. I always love when kids use creative writing to express their feelings about hearing loss, and Addie does a beautiful job of this. The BIG Book of Hearing Our Way will feature a collection of creative writing pieces from the last ten years. Remember, our invitation to Write To Us is always open!
Sponsorship and advertising opportunities, content submissions, change of address, and customer service: contact info@hearingourway.com. Hearing Our Way PO Box 13 Greenlawn, NY 11740 USA
Mel Paticoff Grossman, M.S.D.E. Editor in Chief and maltipoo, Sophie
©2024 Sophie’s Tales, LLC. All rights reserved. Hearing Our Way is a quarterly publication of Sophie’s Tales, LLC. Reproduction or distribution in whole or in part without written permission is prohibited. All comments and suggestions received by Hearing Our Way become the sole property of Hearing Our Way and may be used without compensation or acknowledgment. Hearing Our Way disclaims liability for any losses or damages that may result from using information in this magazine.
Every issue of Hearing Our Way includes listening, language, and self-advocacy strategies. Just look for the symbols! Listening strategies and hearing technology Speech, language, and communication Self-advocacy skill building
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SOPHIE
Be Bold!
With confidence and determination, you can reach any goal you set.
Ultratec.com
Eva is a 16-year-old
girl from New Jersey who has always loved reading. She has hearing loss in her left ear, but with the help of a crossover hearing aid, she never lets her hearing loss hold her back. Ready to discover your next favorite book? Eva invites you
to explore her bookshelf.
fantasy Etta. Etta has ed book about a twelve-year-old girl nam that causes Ménière’s disease, an inner ear disorder loss, and balance symptoms such as dizziness, hearing nces days when the issues. Due to her illness, Etta experie days when world sounds nearly silent but other t part reminded me everything is at normal volume. Tha n to charge my of days I have had when I’ve forgotte more attention hearing aids; I have to focus and pay the day. To to my surroundings to make it through tent and help Etta cope and escape her inconsis about an ks confusing world, she writes comic boo quer anything. Throughout the invincible girl with the ability to con le that come with her hearing loss, whi book, Etta works through the troubles ion r to find a missing dog. Their expedit she and her friend Eleazar work togethe tries that ic as they are surrounded by mag is filled with puzzles and challenges, lly . I enjoyed reading this book, especia to prevent them from rescuing the dog one who loves mysteries the ending, and I recommend it to any with hearing loss. and adventures as well as characters
Etta Invincible by Reese Eschmann is a
BOOKS WE L VE: EVA’S BOOKSHELF
FUN FACT WE L VE: OWLS! Barn owls are known to have some of the best hearing of all animals, but do you know why? There are a few reasons:
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They have very large cochleas that allow them to hear a wider range of frequencies.
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Owls are said to have ‘ageless hearing’ because they have natural hair cell regeneration.
They have asymmetrical ears to better localize where sound is coming from. The left and right ear canals are differently shaped, and one external ear flap sits higher than the other.
HEARING OUR WAY
Jenny Ackerman, author of What an Owl Knows, and professor Lawrence M. Witner, PhD, Ohio University, shared these fun facts.
SIBLING SP T STERS MEET TWIN SinInesota who from Delano, M ss get in g lo never let hearin the way of fun!
Evie, 11, has bilateral cochlear implants. Her twin sister Mila, does not have hearing loss. Evie loves playing basketball and soccer, while Mila enjoys tennis and swimming. Together they love rollerblading, art, baking cookies with their grandma, and playing with their dog Rosie.
Evie: I was diagnosed with severe to profound hearing loss after my newborn hearing screening. I had my first cochlear implant surgery when I was 9 months and was bilateral at a year old. I attended Northern Voices, a school that helps kids with hearing loss learn to listen and speak, from the time I was diagnosed until I graduated at age 5. I have been at the same mainstream school as my twin sister Mila ever since.
Mila: I enjoy sports, being with friends, and I’m excited to be in the fall musical this year! I am always there to help Evie. If some people at school don’t know what her cochlear implants are, I will help them understand. If she ever needs help with hearing, I will tap her on the shoulder and help her know what to do. It can be really hard trying to help everyone around us understand Evie’s hearing loss. It can also feel frustrating when her implants are off, and we can’t communicate.
Evie: Mila has helped me learn to listen and speak, and she is always there to advocate for me when needed. She repeats sentences for me, helps me calm down when I get upset, and tries to find my cochlear implant if it goes missing. Life with hearing loss can be challenging. Classroom noise can be really distracting. Listening breaks and having my teacher of the deaf Mrs. Fergen really helps. Recently I had the opportunity to speak to parents of younger kids with hearing loss, and I enjoyed sharing my story.
W RDS W RDS W RDS
Smart Cookie
Mila: When Evie loses her cochlear implant, I am usually the one to find it! Except for one time when we had the school, our parents, everyone looking for the missing cochlear implant. All of a sudden our Grandma said, “Look what I found in the pantry!” and there it was, stuck on the metal shelf. Grandma saved the day that time!
One Last Word: Like many siblings, sometimes we love doing things together, and other times we enjoy doing things on our own. We both admit we might annoy each other sometimes, but we love each other, we always have each other’s backs, and we couldn’t imagine life without each other.
Language can be tricky, especially idioms, which are groups of words or expressions that mean something different than what they say. You might hear the idiom smart cookie and think you have the brainiest dessert around, but no! Smart cookie means that someone is clever and has good ideas or solutions. Like this: “Wow, you troubleshooted your FM system all by yourself? You are one smart cookie!”
Hearing loss is part of the whole family. Share your story with us: info@hearingourway.com
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VERCOMINEGS BSTACL F
ORIES O INSPIRING ST S LIKE YOU N KIDS AND TEE
H W DOES LILY HEAR? With her Girl Scout sash on, her friends by her side, and two cochlear implants! ALL ABOUT ME
LILY’S FAVES ACTIVITIES Science Olympiad Penguin Project GAMES Legend of Zelda: Breath of the Wild Splatoon BOOKS Everything I Never Told You by Celeste Ng The Metamorphosis by Franz Kafka MUSIC boygenius Chappell Roan FOODS Sushi Iced coffee
Want to be on our next cover? Email your story to info@hearingourway.com
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Hi, I’m Lily! I am 17-years-old and in high school in the Midwest. At school I am involved in the speech team, Zoo Crew, and student council student activism team. I also enjoy theater, drawing, art, cello, being a junior camp counselor, and being a Girl Scout. I am a big fan of Hearing Our Way and have subscribed since the very beginning. Being featured is a lifelong dream come true.
HEARING MY WAY When I was born, I was diagnosed with profound hearing loss due to TMPRSS3, the fifth most common gene associated with congenital deafness. I received bilateral cochlear implants at 10-monthsold. My family has always focused on listening and spoken language, and I’ve done very well in mainstream public schools. I even have a 4.0+ GPA. My favorite hearing loss products are my purple Advanced Bionics Marvel Cochlear Implants and my Phonak Roger Touchscreen. I couldn’t live without them.
SELF-ADVOCACY STAR At the start of every school year, I meet with my teachers and give a presentation about myself and my hearing loss. I’ve done it so many times now that I hardly need to prepare. The teachers appreciate the training, and we all feel more confident going into the school year. I’ve attended many of my IEP meetings to ensure my needs are addressed, and I advocate for what I want and need. I utilize the accommodations provided to me in my IEP. I always make sure to advocate
when I can’t hear my friends or peers, or when I need to remind teachers to use my FM at school. There will always be things I need to be aware of and think about related to my hearing loss on a daily basis, like changing my batteries and knowing when my cochlear implants might ‘quit.’ Overall, I am used to the challenges of hearing loss, and it is a normal part of my life.
SILVER LINING Even though there have been challenges related to having hearing loss, there has been a lot of positive to come from it, too. Because of my hearing loss, I have had special opportunities come my way, including travel, being involved in research studies with fantastic people, and developing my own projects related to hearing. Other benefits include streaming music from my phone directly to my cochlear implants, hearing through walls with my FM system, and taking my ears off and having silence. I sleep peacefully without disruptions.
THAT’S JUST THE WAY I HEAR I don’t mind when people ask about my hearing loss and devices. My cochlear implants are just a part of me, and people are curious. I will gladly explain! I tell them that these are cochlear implants, I’m deaf, and my cochlear implants help me hear. Sometimes I say, ‘cochlear implants are like super strong implanted hearing aids.’ If people are still curious, I am happy to explain more. Hearing loss is a part of my identity because it gives me shared experiences with others with hearing loss and because it influences the way I see and experience the world. It is something that makes me different from others, but that isn’t a bad thing.
BROTHERLY LOVE I have one 12-year-old brother who has typical hearing. My hearing loss hasn’t affected our relationship much, but he definitely knows more about hearing loss and cochlear implants than the average kid! My brother says sometimes he wishes he had cochlear implants so he could stream the computer audio directly to his brain and turn off sound whenever he wants, like I can.
Collecting water samples for Lily’s Stream Health Science project.
MY BEST ADVICE My advice for kids and teens with hearing loss is to try not to feel too cool or scared to ask for accommodations. You have a right to access everything kids with typical hearing can access. Don’t be shy about educating those around you. You are your best advocate. You know what you need. Simply talking to people will help you solve so many problems. The biggest lessons I have learned from hearing loss are how important it is to ask for these accommodations. Many people don’t understand or haven’t met anyone with hearing loss. Every person with hearing loss is different, so we can all help by teaching people how they can help us.
#GOALS My hopes and dreams for the future are still in development. As I go through high school, I want to try new things and discover what I like to do. I plan to attend college and further my education in psychology, neuroscience, or cognitive science. Whatever I do, I want to be passionate about the subject, and I am inspired
by helping others. I want to impact people’s lives through advocacy and serve individuals with challenges like mine. Hearing loss adds some obstacles to reaching my goals, but it also improves my connections and provides me with different opportunities in the future. I am self-motivated and know that I will reach the goals that I set.
GOLDEN GIRL For my Girl Scout Gold Award Project (the highest honor a Girl Scout can receive), I combined my passions for both science and hearing loss to create a resource to help people with TMPRSS3. When I was diagnosed, there was very little known about the gene, and there was nowhere to learn more. I wanted to change that! My easy-to-read website, designed with kids and their parents in mind, aims to help them understand the gene, find resources, and expand their knowledge. I highlight the importance of genetic testing for hearing loss and the research that has been done on this specific gene. www.tmprss3.org
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S PHIE'S SPOTLIGHT
Liam & Jack: A Friend Like Me Liam, 8, and Jack, 8, are third graders from Orange County, New York who have a lot in common! Their friendship first began when they attended the same preschool, and though they’re in different schools within the same school district now, their friendship never ended. They both play midfield positions on the same soccer team, attend religious school together, and both wear hearing aids and work with the same hearing teacher, Mrs. Novi.
ons s a e R 0 Top 1 Having We Love with a Friend Loss Hearing
Hi, I’m Liam! I have one hearing aid, and
I use a Connect Clip FM system to help me hear in the classroom. I live with my mom and step dad, two stepbrothers, and a dog named Griffin. When I visit my dad and step mom, I see my little sister, a dog named Jakey, and two cats. I love sports, especially playing on our soccer team, Force FC (#25!), as well as sports video games like FIFA and NBA. My favorite football team is the Kansas City Chiefs, and my favorite soccer team is Paris St. Germain.
Hi, I’m Jack! I wear two hearing aids
and use a Roger FM system to help me hear. I live with my mom, dad, older brother and older sister. I don’t have any pets right now, but I am begging my parents for a dog! Like Liam, I love sports, and I am #20 on our soccer team Force FC. My favorite soccer teams are Portugal and Argentina, and my favorite baseball team is the New York Mets.
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1. We have someone we can relate to. 2. We can swap stories about our teachers forgetting to turn off the FM mic. 3. We have someone we can complain to about the annoying parts of wearing hearing aids, like when our earmolds get clogged when we forget to take them out before showering. 4. Other kids see that we both have hearing aids so it’s not as big a deal. 5. We have someone to talk to about our hearing loss who ‘gets it’. 6. We can relate to the annoying high pitch sound of the recorder through our hearing aids. 7. We can remind each other how far we’ve come since we were younger and still getting used to our hearing aids—it gets easier. 8. We can vent when we don’t feel like explaining what’s in our ear AGAIN FOR THE 1,000,000th TIME! 9. We can support each other and remind each other to be patient, keep trying, and work hard to become great self-advocates. 10. We can count down the days until middle school when we can finally go to the same school together. We can’t wait!
Sophie loves shining a spotlight on amazing kids with hearing loss around the world. To shine a spotlight on someone you know, write to us at info@hearingourway.com.
EDUCATI N STATION
Hi, I’m Ms. Keenan,
an itinerant teacher for deaf and hard of hearing students in Queens, New York. Did you know that November 9th is Microtia Awareness Day? Microtia is when someone is born with one or both outer ears missing or not fully developed. Two of my students, Leila and Kiara, have microtia, and last year they did presentations for their classes on Microtia Awareness Day.
Here are some questions we answere d in our presentation:
Hi, we are Leila (10) and Kiara (9),
and we were both born with microtia atresia on our right sides! We both wear (bone anchored hearing aids) to help us hear. Last November, our deaf and hard of hearing teacher, Ms. Keenan, helped us present to our classes about microtia for Microtia Awareness Day. At first we were SO nervous to speak in front of our classes, but it turns out our classmates had a lot of great questions and were very curious. They had never seen someone with ears like ours before, but some of them knew people who used hearing aids. After the presentation, we felt relieved and proud that we taught our friends about our unique ears!
• What is the typical hearing proces s and what are the parts of the ear? • What is microtia and what causes it? • What is a BAHA and how does it work? • W hat is HAT (hearing assistive techno logy) and how does it work? • What are some tips to communic ate with people with microtia? • Do you know anyone with hearin g loss? • D o you know any interesting fac ts about hearing? • D o you have any questions for us?
Have you done a presentation at your school? Let us know! info@hearingourway.com HEARING OUR WAY 9
DEAR S PHIE
FUN &S GAME
“For a school assignment, we were asked to write a poem about a challenge. When I was younger, I had many hard days with my hearing loss. As I got older, I learned it is a part of who I am, and it’s no longer the large challenge it once was.” —Addie H., age 13, Verona, WI, unilateral hearing loss
Why do basketball players love cookies with milk? Because they love to dunk them !
Why did the cookie go to the doctor?
Left: Addie’s mom loved the poem so much that she asked a talented artist friend, Anna Krylova, to create a piece of art inspired by the poem as a special surprise for Addie.
He was feeling crumby !
What is a ghost’s favorite snack? Ghoul scout cookies !
What do you call two cookies in love? A batch made in heaven !
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Everyone knows their favorite variety of Girl Scout Cookie. Can you count up each flavor of these cookies? Fill in the circles with your answers.
HERE’S A SNEAK PEEK OF OUR NEW BOOK! Add this new keepsake book to your collection by pre-ordering today: www.hearingourway.com/bigbook or scan the QR code.
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VERCOMING BSTACLES
Fun favorites from over the years
Original stories and new updates!
HEARING MY WAY
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➜ make your own magazine ➜ listening & audiology
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➜ speech & language ➜ IEP & self-advocacy ➜ sports & music
FUN & GAMES
Creative writing collection, art gallery, and more
➜ college & career
SPECIAL FEATURES
Our standout articles all in one place
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Here’s your new issue of HEARING
UR WAY
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LEARN THE LINGO
is issue: Search for these words in bold inside th
Bone Anchored Hearing Aid (BAHA): ring loss that can A device for people with conductive hea lanted. It sends be worn on a headband or surgically imp the skull straight sound vibrations through the bones of outer ear. to the inner ear, bypassing the middle and
P): Individualized Education Program (IE , support a formal plan with specialized instruction able goals. It services, accommodations, and measur port the student includes an IEP team of providers to sup ls and services. and an annual IEP meeting to set the goa
HEARING
UR WAY
PLEASE OPEN!
Localization: The ability to identify where (the direction and distance) a sound is coming from. Microtia: A congenital (at birth) condition in which someone is born with one or both outer ears missing or not fully developed.
Here’s your new issue