The magazine for kids and teens with hearing loss

OOL 2 H C S O T F F O T BL AS

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Contents

Hi from Mel!

4 Things

We Love

6 O vercoming Obstacles

8 Mark it

with an E

10 Fun & Games

Contributors Melanie Paticoff • Editor in Chief N-KCreative.com • Magazine Design Overcoming Obstacles: Alexis Evelyn Ethier • Baking Columnist With special thanks to all of our featured H W friends

www.HearingOurWay.com info@hearingourway.com 8820 Ladue Road, Ste. 203 St. Louis, MO 63124 Volume 4, No. 3 ©2017 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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Dear Readers,

s feel like you’ve day of school can sometime t firs the on m oo ssr cla w t Entering your ne to get to know and differen ers ch tea w ne are ere Th ! anet landed on a whole new pl you like you’re an ybe even ones who look at ma e… for be r yea the n tha y through classmates e you moonwalk your wa for Be s! aid ng ari he ur yo everyone, al ie n when they see by introducing yourself to ar st acy oc dv f-a sel a be sh in e! the door, make a plan to ting your positive attitude let d an s, los ng ari he ur yo talking openly about t your Individualized w much do you know abou ho ns, pla acy oc dv f-a sel of involved Speaking learn how you can get more 9, ge pa on y Wa y M IEP s. Hood, a Education Plan (IEP)? In ur path to self-advocacy! Mr yo on p ste at gre a r, yea s ng involved in your IEP meeting thi , lays out the steps for getti nts pla im r lea ch co h wit er middle school teach s important meeting. before, during, and after thi reach for someone who knows how to is is ex Al 6, ge pa on les mer’s market In Overcomi ng Obst ac working on her very own far a Iow in me ho at is she omplish them. the stars ! Whether goals and finds ways to acc big s set she , rld wo the business or traveling ssive hearing loss and was diagnosed with progre she en wh n ga be vel tra Her passion for places around the set out to see amazing new she en wh t’s tha s; los ion lost”. progressive vis ot all those who wander are ”N : ote qu te ori fav r he by es world. This inspiring teen liv let Evelyn and her rts to get the best of you, sta rk wo me ho en wh at tre 8! Then fly over For a psychedelic laxy Far Far Away on page Ga e ak pc Cu a to u yo e tak baking column ented young musician otlight on Jade, a tal sp r he s ha ie ph to our back cover, where So s. with unilateral hearing los w school year! 3, 2, 1… bl as t of f into a ne rld! It’s sure to be out of this wo

Mel Paticoff Grossman Editor in Chief

and maltipoo, Sophie

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

Sophie

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ati n t S n i t a r e INSPI ying to be lik

any time tr “Don’t waste because the lf e s r u o y t u e the anybody b u strange ar o y e k a m t a h l.” things t you powerfu e k a m t a h t things —B en Platt peech for Acceptance s oadway’s Br Best Actor in ansen at the H n a v E r a e D ards 2017 Tony Aw

ve: Eva’s Bookshelf L e sW hearing loss k o ading ! She has re d ve o lo s ay w b ey who has al , she never lets ireless system rl from New Jers

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e an Acad tress ! ] iver and w in her s -year-old gi jo ’ ce 9 re e to a , s u h a cu yo v s Fo S E te er t [ vi og Mee of her R g ac book ? Eva in t with the help -winnin ur next favorite yo d er r ov a sc di w in her left ear, bu to A dy ld her back ! Rea shelf. hearing loss ho explore her book to e) lu tavia Spencer her friends, oB c D O r. y D b h fis e t pe iv r t he (and inja Detec detective, and

s, N ninja cter was Randi Rhsotedryeseries about Randi Rhordseoslv, ae crimes. My favorite chara kwon do mas-

e e This is a my lor, who help h n’t stop him from being a ta encourages y Ta e g d u P d n , which Dario Cruz a aring loss, but that does ge of the book best, and of a s s e e m h e s h a t h d e their Dario; h ter! I love up, always try them. I recommend e iv g r ve e n o t top kids t a disability s e of your course never le e it will keep you on the edg s will do us nd this book beca der what Randi and her frie n seat as you wo tery! s y m to solve the

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a in which he plays r, ve ri D y ab B e, vi ough on mo ) has a new acti the hopes for a better life. Th us, rs ta S ur O in t ul in f tin nit termind RT (The Fa ANSEL ELGO ver who works for a crime mas rings awareness to the issue o IHL) among b s (N dri young getaway hildren under 18 (Rated R), it d by noise-induced hearing los nnitus, because he c e , ti r s the film is not fo ing in the ears that can be cau nd Baby has ringing in his ears o drown that ringing out. ng r, a et a sensation of ri rt says, “I play Baby, the drive s to listen to music all the tim nd the audience hears that o a ha lg other causes. E ident when he was a kid. So he e the soundtrack to the movie, ys great to see hearing a c b c o lw a t a r was in a ca s to turns out d moves to that music.” It is n e t lis e h ic s u ts an And the m edia ! entire movie cu music, and the s awareness in mainstream m los

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g Siblint sp topher, is r h C t e e M alerie , V d n a , ia h o never let S op lifornia wh

Rocket Science

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t sister. I lov Christopher: Valerie is a grea w to

g her ho playing with her and teachin We like to play pronounce words correctly. ch other a lot. catch together. We love ea she ter because she’s sweet. If sis le litt my h wit g yin pla Sophia: I like e learns ht, I teach her them, and sh rig s rd wo r he of me so y sa doesn’t e makes a understand something, sh or ar he n’t es do e sh If . me from hat did you say? ” cute little face and says, “W and have r in our room. We play dolls te sis my h wit y pla to like I Valerie: ar my sister, and cochlear implant to he aid ing ar he my e us I . lks ta long our iPad! watch and watch movies on to d an , ds en fri d an r, he ot br hearing to attend deaf and hard of like we ly, mi fa a As : st Fir Family like to talk nnect with other families. We co n ca we e er wh s mp ca ly fami because being a sibling is a r he ot ch ea t or pp su d an s, to other siblings h other kids with hearing los wit ts ec nn co ie ler Va e. nc unique experie a lot of support there, too. and our parents have found ge the way we feel about an ch n’t es do s los ing ar He ser One Last Word: s has brought our family clo los ing ar he s ie’ ler Va t, fac our sister. In sionate pting, patient, and compas ce ac re mo all us de ma d an together Share people. le family.

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 rocket science and think it has to do with the study of rocket ships… nope! (That would be called aerospace engineering!) Rocket science is an idiom usually used in a negative way to express something that shouldn’t be difficult at all! Like this: “Now that I’m older, I know how to replace my hearing aid batteries so quickly, but when I was first learning, it felt like rocket science to me!”

who art of the gourway.com p is s s lo earin Hearing ith info @ h w y r o t s r you

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

Alexis’ Travels France: I visited the Eiffel Tower, the Louvre, and Disneyland Paris. Germany: I lived here for a month as an exchange student. I loved the castles, culture, and trains! Hawaii: I saw an active volcano with real lava, hiked in a rain forest, and ate delicious pineapple at the Dole Plantation! Iceland: I visited a glacier, and on the way down the mountain there was a crazy snowstorm with no visibility, so the vehicle I was in had to navigate by GPS only! Jamaica: I climbed Dunn River Falls, rode horses in the ocean, and swam with a dolphin! New York: I took a carriage ride through Central Park, shopped in Times Square, and took a boat to the Statue of Liberty and Ellis Island. United Kingdom: I saw the Roman bathhouses, Buckingham Palace, and the London Eye.

Still to Come: Ireland: I want to visit the Giant’s Causeway, a natural wonder of the UK. Italy: I want to see the Colosseum in Rome. New Zealand: I love animals, so I want to observe penguins and monkeys in the wild.

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H W does Alexis hear? With a thirst for adventure, a passport in hand, and bilateral cochlear implants!

All About Me

Hi, I’m Alexis, and I’m 16-years-old. I live in Iowa where I love to raise farm animals, but my true passion is traveling the world and seeing as many new places as possible!

Hearing My Way

In preschool, I began to fail my hearing tests and got my first pair of hearing aids. From then, my hearing slowly got worse. Not only was I not hearing, but when I did hear, I didn’t understand. My mom would tell me to do something, but I’d do something else. My friends would say one thing, but I’d hear something different. I was diagnosed with severe auditory neuropathy, a hearing disorder. In fourth grade I became a candidate for cochlear implants because of the neuropathy. Once we knew my first cochlear implant was a success, I received my second implant the following year. It was such a relief to be able to hear people again… and understand them correctly! My cochlear implants have been the best choices I’ve ever made.

Overcoming Obstacles

Around the time that I got my cochlear implants, my vision was getting worse, and I was starting to have balance problems. After years of genetic testing and doctors appointments without answers, we convinced my grandma, who also has hearing and vision loss, to go to the eye doctor with me. When the doctor compared our optic nerves, we discovered a genetic link, and I received an official diagnosis of a genetic mutation (OPA1), resulting in Dominant Optic Atrophy Plus. Unfortunately, for me it causes both progressive hearing loss and progressive vision loss along with balance problems.

School Days

Before I was diagnosed with auditory neuropathy and received my cochlear implants, I attended a private school that didn’t provide me with the support I needed. When I didn’t hear or understand, I felt accused of acting out or not following directions. When I couldn’t hear my friends or misunderstood what they said, I felt left out. Luckily, my parents decided it was time for a change. My new school was a huge turning point for me, and I felt like my happy self again. My new teachers were supportive and made me feel included in class. They checked in to make sure I understood. Over the years, my teachers at my new school have gone above and beyond to help me. My science teacher assigned us a research project about hereditary diseases, and allowed me to study my own disorder, DOAplus. This was the first time I ever researched my condition and talked to my classmates about it. Even though it wasn’t easy to find out that there is no known cure for DOAplus and that if I have kids, they will have a 50% chance of having this condition, it was an important step in my understanding and acceptance. Another supportive teacher has been my Physical Education (P.E.) teacher, who gives up his free period every day so that I can do my physical therapy exercises in his office to help my balance.

who wander are lost.” —J. R. R. Tolki e s o h t l l en “Not a Travel

After I found out that I was slowly losing my vision, I decided that I wanted to travel as much as I could while I can still see. My family, school, and local community have been so supportive in my journey. With their help, I’ve already experienced so many places, including 4 European countries and more than 15 states in the U.S. One of the best parts has been connecting with other kids from all over the world.

On the Farm

I have a passion for agriculture (the science of farming) and take classes at school where I learn to raise chickens and other farm animals. My cow, Storm, is a few months old and drinks from a bottle. I take her to an annual ‘kindergarten forest’ to teach kids about agriculture. I turned this love of agriculture into my own business in the hopes of raising money to travel. At my local Farmer’s Market, I sell vegetables from my garden, homemade treats like my award-winning banana bread, and jewelry.

Vision for the Future

I hope to have a career that involves one of my two passions: animals or travel. I want to be a veterinarian because I have a special bond with animals. I also would love to be a travel blogger who gets paid to travel the world and write about new places and experiences. I know that my hearing loss definitely does not and will not stop me from accomplishing my dreams. I may have to go about them differently, but I can do anything I set my mind to; nothing will limit me.

Alexis’ Advice

Do everything you can before you can’t do it anymore. You never know what life will throw at you. Just because you have hearing loss or another disability, it does not change your ability to achieve your dreams. Most importantly, I have learned to live by The Golden Rule—treat others how you would like to be treated. You never know what someone is going through in their life. If we all show patience and compassion, the world will be a better place.

Be on our next cover! info@hearingourway.com

I want you to hear your friend asking to come play. Kanso® is a new way of hearing with a Cochlear Implant. It’s an off-the-ear sound processor designed to be comfortable and easy to use while providing your child’s best hearing experience. Call 1 866 922 9211, or visit IWantYoutoHear.com for more information. ©Cochlear Limited 2017. All rights reserved. Hear now. And always and other trademarks and registered trademarks are the property of Cochlear Limited. CAM-MK-PR-313 ISS1 MAR17

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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!

Cupcake Galaxy Far Far Away

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. If you want to save time, you can use a box cake mix. Always keep an eye on your cupcakes because ovens can be different temperatures and could take a shorter time to cook. Try to use gel or paste food coloring as it won’t thin the frosting out. The frosting consistency should be able to hold its shape.

INGREDIENTS

ICING:

• 1/2 cup hot coffee • 1/2 cup unsweetened cocoa powder • 1 cup all-purpose flour • 1 cup granulated sugar • 1 teaspoon baking powder • 1/2 teaspoon baking soda • 1/4 teaspoon salt • 1/2 cup whole milk • 1/4 cup vegetable oil • 1 large egg • 1 teaspoon vanilla

• 2/3 cups unsalted butter, softened • 2 ¾ cups confectioners sugar, sifted • 3-4 Tablespoons whole milk • ¼ teaspoon vanilla • Food coloring (purple, dark blue, light blue) • Silver pearl dust (optional)

CAKE DIRECTIONS 1. Preheat oven to 425º F. Place cupcake liners in muffin tin. Spray lightly with cooking spray. 2. Combine hot coffee and cocoa powder. Mix well to dissolve and set aside. 3. In a stand mixer set on low, combine flour, sugar, baking powder, baking soda, and salt with a paddle attachment. 4. In a separate bowl, whisk together milk, oil, egg, and vanilla. Mix well to combine. 5. A  dd about half of the milk mixture to the flour and mix on medium/high speed for 2-3 minutes until light and fluffy. 6. Combine the chocolate mixture with the remaining milk mixture and add to the batter. Mix batter on medium speed for about 30 seconds. 7. Distribute batter evenly to the 12 muffin cups. 8. Bake for 5 minutes, then reduce heat to 325º F. Continue cooking at lower temperature for an additional 13-15 minutes until a toothpick inserted in the middle comes out clean. 9. Remove from the oven, let sit, then transfer cupcakes to a cooling rack.

ICING DIRECTIONS 1. With an electric mixer on high, beat the butter for about 5 minutes until pale and fluffy. 2. Add half of the confectioners sugar and mix on low. Then add the rest and mix. 3. Combine the milk and vanilla together. Then add it to the butter/sugar one tablespoon at a time until you get the consistency you want. You’ll need about 2-2 1/2 tablespoons. 4. Beat on low then turn your mixer to high and beat for 2-5 mins. 5. Divide into 3 bowls and add food coloring into each to make one dark blue, one medium purple, and one light blue. 6. Scoop each color frosting into one piping bag fitted with a 1M piping tip so that they are side by side like a triangle rather than on top of each other. 7. Pipe a swirl onto your cupcake. Sprinkle pearl dust on top to add shimmer.

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Get baking, then send in your pics! @HearingOurWay

Meet

Emily!

IEP MY Way

An IEP is designed to help you, the student, but are you ready to attend your IEP meeting? Get ready for the new school year with our IEP Guide! Individualized Education Plan (IEP): Action steps for you and your teachers to help you achieve your goals. IEP Meeting: A yearly meeting to discuss your progress, set new goals, and plan accommodations. IEP team: A group of people that meets to create and update the IEP, typically including your parents, teacher of the deaf, case manager, and school principal or director of special education. Other teachers and service providers, such as your audiologist, may be included. When you were younger, you may not have attended your IEP meetings. However, YOU are the most important member of your IEP team. Talk to your teacher/parent about the right time to start attending your IEP meeting.

in how Accommodations: Changes Some of rn. lea you at you learn, not wh ions for dat mo om acc n the most commo lude: students with hearing loss inc • preferential seating • FM system T) • live captioning (such as CAR ned tio cap be st • audio/video mu • no oral tests • provided notes ork • teacher must write homew ce them oun ann t jus not assignments, ter time • resource room/learning cen

1. Before the IEP Meeting: • Create a list of questions. • Create a list of possible solutions to problems you have experienced in class. • Create a list of accommodations including: • Accommodations you’ve used in the past and want to keep • Accommodations you’ve used but haven’t found beneficial • Accommodations you would like to try this year • Give a copy of these notes to your case manager or itinerant teacher ahead of time to prepare for the meeting and create an agenda. 2. During the IEP Meeting: • Introduce yourself with a friendly smile. Thank everyone for being there. • Make sure you can hear and see everyone’s faces. If not, demonstrate your self-advocacy skills by speaking up and moving your seat. • As decisions are made, repeat and rephrase to make sure you understand. Try this: “So, what I understand is that we will do a trial of CART in one class to begin, then add more?” • Ask questions. The people in the room are your biggest supporters and will be proud to see you take part in the meeting. 3. After the IEP Meeting: • Ask for a copy of the meeting notes. • Read and review the new IEP. • F ollow through by using the accommodations you selected and reminding teachers about the accommodations when necessary. • If a teacher isn’t following the IEP, ask your case manager for advice. • Always remember: Ask for what you need politely (without accusing), and you will find that people are more willing to accommodate you!

My dream career

I want to be a pediatric audiologist to help families through the process of hearing loss diagnosis, amplification, and education. As someone who grew up wearing hearing aids and recently received a cochlear implant, I know how important it can be for kids with hearing loss to interact with adults like them. It shows them that we can be successful no matter the circumstances!

My Self-Advocacy Story

Until college, I was always the only person in class who wore hearing aids. It took a long time for me to become comfortable in my own skin. At first I didn’t use any assistive devices, but when my hearing loss become more severe, I realized I needed additional support. I had to go out of my comfort zone and request accommodations to ensure my academic success. It was a learning process to find the right services and feel more confident speaking up, but it was well worth it!

Tips & Tricks

I’ve always found it tricky to position my phone or headphones near my device’s microphone. Luckily, wireless technology is now available for most hearing devices! I love to stream music and phone calls directly to my devices, and I even have a directional microphone my professor can use that streams wirelessly, too. If you can take advantage of wireless capabilities on your devices, I highly recommend them!

My Role Model

My sister Angelica is my role model. Even though she is seven years younger than me, she always made sure I was included in conversations and would even speak up for me when I wasn’t comfortable doing it myself. She advocates for others without being asked, and I think the world could use more selfless, open-minded people like her!

Interested in learning more about Emily’s graduate program in deaf education and audiology? Meet the Teach: Guest writer Kate Hood is a middle school math teacher from Alabama. Mrs. Hood wore hearing aids from kindergarten through college and now has cochlear implants. Did you attend your IEP meeting this year? Send in your tips! info@hearingourway.com

Visit pacs.wustl.edu

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sophie's spotlight on jade

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Sophie loves shining a spotlight on amazing kids with hearing loss around the world. Jade’s dad wanted to share her story with us. To shine a spotlight on someone you know, write to us at info@hearingourway.com!

Jade is 11-years-old and wears one hearing aid, but she isn’t the only person in her

family with hearing loss. Like Jade, her youngest sister also has unilateral hearing loss, and both her dad and her 8-year-old sister have bilateral hearing loss. Jade is a great role model for her younger sisters. Her dad describes her as loyal, passionate, intelligent, and wonderful! She excels in the mainstream setting, is fluent in Mandarin Chinese (WOW!), and is also a talented musician, studying violin for six years. Jade learned the Suzuki Method, which means she learns songs by hearing them. Her hearing loss certainly doesn’t slow her down!

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Puzzle answer

Her dad says, “Before becoming a father for the first time, I had no idea what to expect. These past 11 years have been an amazing ride, and I am so proud of everything Jade has accomplished. Whatever the next 11 years have in store for Jade, I am sure she will thrive and be successful. I cannot wait to see where she ends up!” Awww!