Hearing Our Way: Winter 2019

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The magazine for kids and teens with hearing loss

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Contents 4 Things

We Love

Hi from Mel!

6 O vercoming Obstacles

10 Fun & Games 12 Sophie’s

Spotlight

Contributors Melanie Paticoff Grossman • Editor in Chief Magazine Design • N-KCreative.com Overcoming Obstacles • Jacob Mark it with an E • Evelyn Books We Love • Eva With special thanks to all of our featured H W friends

Dear Readers,

w year, us, along with not just a ne on up are ays lid ho e . th . . ghts? It’s that time of year again 2019, what were the highli on ck ba k loo u yo As e! k forward but a whole new decad rn this past year? As you loo lea u yo did at Wh s? ge en What were the chall your goals? this coming year? What are e iev ach to g pin ho u yo to 2020, what are ? What will you do differently life has , likes to reflect on how his les ac st Ob ng mi co er Ov Jacob, featured in ers thought, cared a lot about what oth ob Jac , kid a As st. pa rs changed from yea ommodations or hearing loss by not using acc his e hid to d trie he son life. and for that rea ng loss is a huge part of his ari he ed liz rea he l, oo sch high earning self-advocacy skills. But in new heights—including to ed ar so s ha he s, los Since embracing his hearing ah! ship in rocket science. Wo ern int an d an ss Mi Ole to a full-ride out winter. She t, knows a thing or two ab gh li ot sp 's ie soph Alberte morgan, featured in d alpine skiing. And sisters an , ing ski c rdi no g, pin jum ter long loves winter sports like ski ezing temperatures all win fre ce en eri exp , t sp g and Ella, featured in Siblin in Denmark. Br rr r ! winter ir families a whale of a We wish our readers and the and a very happy new year! filled with lots of holiday joy

, M.S.D.E. Mel Paticoff Grossman

www.HearingOurWay.com info@hearingourway.com PO Box 13, Greenlawn, New York 11740 Volume 6, No. 4 ©2019 Sophie’s Tales, LLC. All rights reserved. Hearing Our Way is published quarterly and is a publication of Sophie’s Tales, LLC. Reproduction in whole or in part without written permission is prohibited. See p.11 for more information about subscriptions for homes, schools, and offices or visit www.HearingOurWay.com. For promotional opportunities, change of address, or other customer service, contact info@hearingourway.com. • 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. • Inquire today about sponsorship and advertising opportunities. Contact Info@HearingOurWay.com.

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Editor in Chief

exciting P.S. 2019 was an earing year for us at H elcomed Our Way — we wthe team. someone new to in! Meet baby Benjam

Look for these symbols throughout the magazine for special tips !

Hearing – Info about hearing aids, cochlear implants, and listening devices Talking – Tips for speech and language Self-Advocacy – Ideas for sharing your hearing loss story with others

Did you receive this issue from a friend, school, or office? Sign up for your own subscription to continue receiving Hearing Our Way ! www.HearingOurWay.com

Sophie


Connecting Made Easy Enjoy talking on the phone – confident that you’ll catch every word! CapTel® shows you captions of everything they say. It’s like captions on TV – for the phone!

CapTel 2400i includes Bluetooth® connectivity and Speakerphone.

www.CapTel.com l 1-800-233-9130 FEDERAL LAW PROHIBITS ANYONE BUT REGISTERED USERS WITH HEARING LOSS FROM USING INTERNET PROTOCOL (IP) CAPTIONED TELEPHONES WITH THE CAPTIONS TURNED ON. IP Captioned Telephone Service may use a live operator. The operator generates captions of what the other party to the call says. These captions are then sent to your phone. There is a cost for each minute of captions generated, paid from a federally administered fund. No cost is passed on to the CapTel user for using the service. CapTel captioning service is intended exclusively for individuals with hearing loss. CapTel® is a ® registered trademark Ultratec, Inc. trademark The Bluetooth®of word mark and logos are registered owned Bluetooth SIG, Inc.Inc. (v2.5 7-18) CapTel is a of registered Ultratec. Bluetooth is a trademarks trademark of by Bluetooth SIG,


Look We L

ve:

Adrien, 14, and Alex, 12, are brothers from Paris, France who are proud to hear with cochlear implants. They both love listening to music and taking dance classes. Adrien prefers hip-hop dance, and he plays tennis as well. Alex does jazz dance and attends theater classes, too. We love their new haircuts with lightning bolts that really show off their hearing devices!

books We L ve: Eva’s Bookshelf

always loved

Jersey who has Eva is an 11-year-old girl from New of loss in her left ear, but with the help reading! She has hearing ® system, she never her Roger Focus receiver and wireless dy to discover your lets hearing loss hold her back! Rea to explore her next favorite book? Eva invites you bookshelf.

is an inspiraSong for a Whale by Lynne Kelly er give up if you tional novel that teaches kids to nev in character, believe in something strongly. The ma communicate. Iris Iris, is deaf and uses sign language to k, but the faces challenges throughout the boo t a whale main problem is that she wants to visi does. she named Blue 55 who feels isolated like g son cial spe She wants to play the whale a lives 55 e that only he will understand, but Blu k boo to far away in Alaska. I recommend this sionate readers who enjoy reading about pas drama like you If and determined characters. rney jou and adventure, come with Iris on her f, too! to find Blue 55… and to find hersel

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Art We L

ve: My Lucky Ears

Priscila is an artist with a bone-anchored hearing aid who has a son with a cochlear implant. She loves sharing stories of hearing loss through art. Her campaign for International Cochlear Implant Awareness Day featured children playing musical instruments, including The Violin Player and The Trombone Player. Priscila uses multiple mediums* in her art; these paintings feature cold porcelain clay for the ear and cochlear implants.

A one-of-a-kind piece of artwork is the perfect gift for the holidays.

Visit myluckyears.com to commission your own custom artwork or purchase prints of the artwork you see here. Code hearingourway gets you 10% off your order!

*medium: the materials that are used to create a work of art.


Meet two sisartke,rswho never

from Randers , Denm in the way of fun ! let hearing loss get

Sibling sp t

W rds, W rds, W rds Whale of a good time

hearing loss due to the Alberte, 4, and Ella, 3, both have severe r implants. Together they Connexin 26 gene and hear with cochlea day! love to use their imaginations to play all y talkative and have a Alberte: I love my cochlear implants. I am ver to make up games and play great vocabulary. I am very creative. I love to play with my little with my friends in kindergarten. I also love sister Ella. follow my big sister Ella: I am a typical little sister who loves to ions ! I play with older Alberte around, but I also have my own opin me learn to talk well. I also children Alberte’s age which has helped messy! love to do puzzles, play outside, and get One Last Word: Our Mommy and Daddy of wanted us to be able to be as active as all our friends- we needed a headband that would help keep our cochlear implants on! y They created a business called Ciha. The make comfortable headbands and special tape to help children keep their hearing devices on while they play.

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 whale of a good time and think you are off to have fun at the aquarium… No! Whale of a good time means an exceptionally great, fun, or exciting experience, comparing the amount of fun to the size of a huge whale. Like this: “Disney World was the best vacation I’ve ever been on. I had a whale of a good time!”

Visit www.ciha.shop to check it out and for 10% off your order! use code Hearing loss is part of the whole family. Share your story with us: info@ hea ringourway.com

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ng vercomi

bstacles

f Stories o Inspiring You ! e ik L Teens d n a s id K

H W does Jacob hear? With his schoolwork in hand, passport in his pocket, and one cochlear implant!

All About Me

Jacob’s Faves H MUSICALS The Greatest Showman Hamilton

H BOOKS Harry Potter The Martian

H TV SHOWS Stranger Things Game of Thrones Friends

H PLACES Zion National Park Rocky Mountains Grand Canyon Great Sequoia Park

H HEARING GEAR: VibraLite 8, a watch to wear overnight with a strong vibrating alarm clock

H PRO TIP: Carry a spare battery with you at all times!

H ROLE MODEL: Stephen Hawking, brilliant scientist who did not let his disability limit him.

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Hi, I’m Jacob. I am 21-years-old and a junior at the University of Mississippi. I’m majoring in chemical engineering and dual minoring in computer science and mathematics. I hope to work in the aerospace industry—I find space and rockets fascinating!

Hearing My Way

When I was born, there was no newborn hearing screening, so I was not diagnosed with hearing loss until I was 13-months-old. I wore two hearing aids until I received my cochlear implant at two-years-old. To learn to listen and talk, I went to the River School in Washington, D.C., followed by the Moog Center for Deaf Education in St. Louis, Missouri. I was mainstreamed in first grade at my home school district in Columbia, Illinois. Due to a soft failure of my device, I was explanted and re-implanted at age 10.

Overcoming Obstacles

Growing up, I really struggled with feeling different from my hearing friends. I refused to accept help, advocate for myself, and use resources like my FM system. I didn’t go to most of my IEP meetings; I let my parents and teachers do it for me. I had a big obstacle to overcome: myself. By the time I was in high school, I finally realized that this idea that everyone in the room was staring at my cochlear implant was all in my head. I changed my perception and started to think of my hearing loss as a gift, not a curse. I became much more comfortable in my own skin and began to actively seek out accommodations and use the resources offered to me. Becoming a good self-advocate improved my studies, and I ultimately graduated as valedictorian of my high school class with a full scholarship! I use my hard-earned self-advocacy skills every day in college. I start the first day of classes by arriving early to introduce myself to the professors and explaining the accommodations I need such as preferential seating, captioning

for videos, and a Roger pen wireless microphone. I then follow up during office hours to thank them for working with me.

Stress Less

As you may imagine, studying chemical engineering is very demanding! I spend many hours a week taking classes, reading, studying, doing homework, and working on projects. All of the work in college can lead to a significant amount of stress. For that reason, I use my free time to focus on stress relief, which for me means being outdoors and being active. I enjoy long-distance running, biking, hiking, rock climbing, weightlifting, and more.

Sleeping Soundly

As a person with hearing loss, I use much more energy to listen and talk all day than someone with with typical hearing. I am often exhausted in the evenings. It can be a struggle to find the energy to do my homework, study for an upcoming test, or go back out with friends after a long day. On the bright side, I am able to fall asleep very quickly!

That’s Just the Way I Hear

As I’ve gotten older, I’ve learned that people stare at me sometimes because they probably have never seen a cochlear implant before and are curious. Now that I’m older, I love meeting new people and talking to them about my device. To break the tension and ease their


nerves, I like to tell them I am a cyborg sent from the future or a top secret spy for the government. This always gets a laugh out of them and shows that I am comfortable talking about my devices. I tell them that I am deaf, and I can hear with my cochlear implant. I show them how it attaches to my head with a magnet, and I also take it off and show them how I can read lips. I’ve found that if I am comfortable talking about my deafness and devices, people will feel comfortable around me in response.

#Goals

I have so many (lofty) goals for the future! I want to complete an IronMan Triathlon (swimming, biking, and running) with the help of my waterproof cochlear implant. I also aspire to travel to every continent, visiting multiple countries along the way. Finally, I wish to work in the aerospace industry while living in a place surrounded by abundant nature. In fact, I am well on the way to making my third dream a reality since intern-

ing last summer at Aerojet Rocketdyne in Rocket City, USA (Huntsville, Alabama), where I built rockets and was surrounded by beautiful forests.

Big Bro, Lil Sis

My sister, Hannah, is five years younger than me, and she is my best friend. My hearing loss has served to make our relationship incredibly strong. She knows what I have been through, about my journey and the daily struggles I have faced, and stands up for me at all times. I can talk to her about anything without judgment. She is incredible, and I am so grateful for her.

Who I Am

Being deaf is a blessing that I would not change if I could. It makes me unique and has taken me on an incredible yet challenging journey. I remember as a young kid waking up, doing speech drills, going to school, coming home, and practicing more speech and listening. Years of hard work and dedication led me

Jacob and his family on vacation.

to be able to listen and speak as well as my hearing peers and taught me that if I set a goal and want to accomplish it, I will. I’ve proven this to myself time and time again and have my hearing loss to thank for my work ethic and perseverance. My advice to other kids with hearing loss is to be comfortable with who you are and your deafness. Don’t make the mistake of comparing yourself to others like I once did. Embrace your unique experience and let your hearing loss become an amazing and beautiful part of who you are.

Be on our next cover! info@hearingourway.com

A seamless connection to life—all they have to do is listen. Give your child access to the latest in hearing technology with the Nucleus® 7 Sound Processor – the industry’s first and only Made for iPhone cochlear implant sound processor.1

For more information, please call 800-354-1731 or visit online at www.Cochlear.com/US 1.

The Nucleus 7 Sound Processor is compatible with iPhone X, iPhone 8 Plus, iPhone 8, iPhone 7 Plus, iPhone 7, iPhone 6s Plus, iPhone 6s, iPhone 6 Plus, iPhone 6, iPhone SE, iPhone 5s, iPhone 5c, iPhone 5, iPad Pro (12.9-inch), iPad Pro (9.7-inch), iPad Air 2, iPad Air, iPad mini 4, iPad mini 3, iPad mini 2, iPad mini, iPad (4th generation) and iPod touch (6th generation) using iOS 10.0 or later. The Nucleus Smart App is compatible with iPhone 5 (or later) and iPod 6th generation devices (or later) running iOS 10.0 or later. Apple, the Apple logo, FaceTime, Made for iPad logo, Made for iPhone logo, Made for iPod logo, iPhone, iPad Pro, iPad Air, iPad mini, iPad and iPod touch are trademarks of Apple Inc., registered in the U.S. and other countries. App Store is a service mark of Apple Inc., registered in the U.S. and other countries. Information accurate as of April 2018.

©Cochlear Limited 2018. All rights reserved. Trademarks and registered trademarks are the property of Cochlear Limited. The names of actual companies and products mentioned herein may be the trademarks of their respective owners.

CAM-MK-PR-376 ISS1 APR18


Hi bakers! My name is Evelyn, and welcome to my kitchen. I’m 13-years-old, I have one cochlear implant and one hearing aid, and I live in Canada. I’m here to share my love of baking with you, so whip out your spatula, and let’s get cooking!

Beary Coconut Cake WHAT YOU’LL NEED Favorite cake recipe or box cake mix Favorite frosting

Look out for boLd text to know what supplies you will need!

— TIPS — If you don’t have a stand mixer you can use a hand mixer. Always keep an eye on your cake because ovens can be different temperatures and could take a shorter time to cook.

10 ounces (roughly 4 cups) of flaked coconut Black and white fondant Small circle cutter or piping tips

INSTRUCTIONS If possible, do step 7 a couple of days in advance! 1. Bake three 6” round cakes and let them cool. 2. When cool, slice off the rounded top of the cakes so they are ready to stack. 3. Put a layer of frosting between each cake. Stack them on top of each other. 4. Put a thin layer of frosting around the whole cake and refrigerate 30 minutes. 5. T o make the eyes and nose, roll out some black fondant and cut out two circles for the eyes and a triangle for the nose (you can round out the edges of the triangle to make it look more realistic!). Roll out the remaining black fondant into a rope and cut a 3” long piece for the smile, a ½” piece for the bridge between the nose and mouth, and two 1” pieces for eyebrows. 6. R oll out a small amount of white fondant and cut out two tiny circles for the whites of the eyes. 7. T o make the ears, roll some white fondant into a ball and using a flat surface, press the ball so it flattens slightly. It should look like a circle and be thick enough that it can stay up. Once the fondant has hardened a bit you can frost the top and sides and cover the edges in coconut flakes. 8. Add a final layer of icing to the cake and cover with coconut. Chill the cake. 9. Add the eyes, eyebrows, nose, and mouth - use the photo as a reference! 10. To attach the ears, use 2-3 toothpicks per ear to stick them into the top of the cake.

Take a polar plunge into your beary coconut cake !

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Get baking, then send in your pics! @HearingOurWay


Happy New Ears!

•••

B y Tr is ti a n

I would like to tell you the story of how I got new ears. I was born with microtia, a mini ear that is closed and can only hear loud sounds. In second grade, I discovered I have hearing loss in my right ear as well during the annual school hearing test. My audiologist started exploring hearing aid options for me. At first I had fun picking out a green hearing aid with a green sparkle ear mold. It helped me hear better, and I liked that, but after awhile it became uncomfortable and didn’t seem to be helping. One night I went to a gathering to meet other people with hearing loss. I met a man who had a bone-anchored hearing aid; I had never seen that type of hearing aid before. I learned that it had Bluetooth capabilities. I went back to my audiologist to ask about it, and she ordered one for me to try out. The trial Baha® had to be worn with a headband. I preferred to wear a hat over it. Even though the headband wasn’t my favorite accessory, the Baha® helped me hear very well. I decided I wanted a permanent device. After two years of hearing aids and six months of a trial Baha®, I finally had my surgery to implant my Baha®. One month later, my device was turned on. I could finally hear my crazy family! For ten years of my life I never heard better than that moment with my Baha®.

Happy New Ears to me!

PACS PALS • • •

! n i b o R t e Me

My dream career

My first career was as an attorney, but after my daughter Allison was born with profound hearing loss, I was inspired to pursue a new career in deaf education. Today, Allison is six-years-old and received bilateral cochlear implants before her first birthday. Working side-by-side with Allison’s teachers and therapists taught me that I wanted to help other children like Allison reach their full potential. I want to share my personal experience to help support and guide other families like mine, especially in the early stages of a new diagnosis and early intervention services.

Overcoming Obstacles

The decision to return to graduate school was not an easy one; it took a big leap of faith. I was leaving my career as an attorney, which I worked so hard to achieve. I was also moving across the country to go to school, far from my extended family, with two small children. I am so happy that I chose to follow my heart with the support of my family. Hearing Allison find her own voice and knowing I will help other children find theirs makes it all worth it!

Inspiration Station

I am inspired by strong women like Michelle Obama and Brené Brown. I love Brené’s quote, “Let go of who you think you are supposed to be and embrace who you are.”

Learn more about __________ graduate program in deaf education and audiology:

pacs.wustl.edu

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Your Logo Here

call you o d le What p of wha u a gro ians? c i s mu stra rcao n A

The Fun & Games Sponsorship is open for 2020. Get in touch! info@hearingourway.com

Destini, 18, is a recent high school grad from Alabama. She does not have hearing loss, but she is her little sister Teralynn’s biggest fan and protector! Destini drew this picture of a hearing aid for her sister.

s hale w o ? td Wha o chew t like gum ber b u l B

GREAT WORK, DESTINI!

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An exciting PEN PAL PROGRAM presented by Ryan Brady with Hearing Our Way ! Pen pals will receive an introductory letter from Ryan and an assigned pen pal. Sign up is free for Hearing Our Way readers at www.HIPPkids.com


Cochlear Families!

Join Inspirely Travel on a one-of-a-kind trip to

just for children with hearing loss and their families! May 7 - 11, 2020

We will plan every detail so that you can enjoy quality time in the parks and lots of opportunities to connect with families just like yours. See you in Orlando!

For more information and pricing, email:

cochlear@inspirelytravel.com

Kennedi and Addison love reading Hearing Our Way and you will, too!

Award-Winning Book Series

aring loss “Every child wit h he ine! � az shou ld have this mag is the aring Our Way An annual subscription to He cher, or audiologist! tea perfect gift for any student, r. Bulk pricing is Prices start at $19.99/yea tals, and doctors offices! available for schools, hospi

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GIFTS FOR THE HOLIDAYS!


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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!

Morgan, 13, is an 8th grade honor student from Sunapee, New Hampshire. She was born

with bilateral sensorineural hearing loss which she inherited from her mom’s side of the family. In fifth grade, her right eardrum ruptured, resulting in a cholesteatoma that required surgery. Now Morgan uses two hearing aids. She is proud to show off her hearing aids to others and even takes the opportunity to set new fashion trends with her hot pink and glittery purple hearing aid molds! In 5th grade, Morgan did a PowerPoint presentation to teach her classmates about her hearing loss and explain what they could do to help her better understand them when they talk to her. She attends her IEP meetings and has a 504 plan. She uses a DM system and Roger pen as well as closed captioning when needed. She makes sure all the teachers know to get her attention before they start talking, and she even has a secret signal to use if she needs her teachers to repeat something!

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Morgan has a passion for alpine skiing. When she races, she does not wear her hearing aids under her helmet. She asks someone to tap her on the shoulder when the announcer says, “Go!” at the starting line. She is inspired by her role model Tara Geraghty-Moats, a USA Nordic Combine ski jumper who had to overcome a physical injury that took her out of skiing for a year. Tara started a movement to open Nordic Combined skiing for girls. Morgan says, “My hearing loss is a part of me, but I never let it stop me from living my life and reaching my goals!” She would like to be a 4th grade teacher and a horse trainer when she grows up.


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