The magazine for kids and teens with hearing loss
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Meet ! le y a g i Ab
fun & s e m ga
Contents 4 Things
Hi from Mel!
We Love
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 • Abigayle ith special thanks to all of our W featured H W friends
Dear Readers,
d after all of a brand new year, 2022, an of NG RI SP dy ea alr it’s I can’t believe is a sweet one. ught, boy do I hope 2022 bro 21 20 & 20 20 ars ye the s the challenge -year-old stories, like the story of a 102 t ee sw lly rea th wi ed ck -pa Luckily this issue is jam a heartwarming A few pages later, there is . ve Lo We s ing Th in t en cochlear implant recipi ng loss, as well y, was diagnosed with heari Lil , by ba e os wh m mo g reflection from a youn aring loss. en, a young couple with he yd Ha d an ine rol Ca t ou ab as a sweet love story like a makes self-advocacy look le ay ig Ab rl rgi ve co s, le ac In Overcoming Obst and Abigayle shares the ’t always sweet like candy, isn life e, urs co Of . ke ca ce of
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too. challenges she’s overcome,
Harold Finkelstein, dedicated to my grandpa, is This issue of er for the past ndpa was a hearing-aid us gra My er. mb ce De in ay aw who sadly passed nddaughter ng loss, grandfather of a gra ari he th wi r hte ug da a of r 30+ years, the fathe . He is so pporter of su ud pro ry ve a d an , nts with cochlear impla sweeter. ries with him are now even missed, and all of our memo
www.HearingOurWay.com info@hearingourway.com PO Box 13, Greenlawn, New York 11740 Volume 9, No. 1 ©2022 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 © or other customer opportunities, change of address, 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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an, M.S.D.E. Mel Paticoff Grossm 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
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
You Are Inspiring
You can do anything you set your mind to.
Inspiration Stati N apts by giving more brain ad “ When you lose one sense, the sense.” —Maya-Camille er sensory information to anoth
Justice of the r of the Chicago bakery ne ow d, sar us Bro lle mi Maya-Ca g competition show ed in Bake Squad, a bakin Pies, was recently featur s her hearing ‘flavor fanatic,’ and credit the ed bb du s wa e Sh x. on Netfli She has worn sense of smell and taste. loss with her heightened did not speak two and shares that she of e ag the ce sin s aid filming, hearing speech therapy. During of ars ye by ed low fol r, until she was fou s such as uesting accommodation req by lf rse he for ted ca she advo s she was d crew. Maya-Camille say an st ca all for sks ma clear accessible ge platform. with disabilities on a lar le op pe t en res rep to excited
In the News: Never Too Old to Receive a Cochlear Implant! Today, some of the youngest kids to receive cochlear implants are little babies only a few months old! But did you know that recently a man named Irvin Poff of Ojai, California, became one of the oldest cochlear implant recipients in the United States at the age of 102?! Irvin, a veteran of World War II, experienced mild to severe hearing loss for 70 years due to noise exposure during the war. Now since receiving his cochlear implant last summer, he is hearing his favorite sounds again like the hum of his favorite cars’ engines as well as brand-new sounds like the voices of his great-grandchildren. While of course it is great to have the best access to sound as early as possible, it is also never too late to consider new hearing technology!
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For more information about the Cochlear Nucleus System and to watch Irvin’s cochlear implant activation video, please visit www.cochlear.com.
Six middle schoolers raise awareness for Better Hearing and Speech Month.
Countdown to Better Hearing and Speech Month: One School’s Story Last May, six middle schoolers from Parsippany, New Jersey created a special video to raise awareness about hearing loss for Better Hearing and Speech Month (BHSM). They did it all through virtual weekly meetings, where they learned self-advocacy skills from their teachers of the deaf, shared tips and experiences with each other, and brainstormed how to create a video campaign to share their hearing loss experience with their peers.
Piec e of Cake
Build a Support Group: Shamik: By getting together weekly to talk about things like school work and hearing-related tips, we are working on creating a better life for ourselves.
Taylor: We encourage each other to be comfortable being ourselves and to have the confidence to speak up when something is wrong. It’s teamwork.
Nirmal: I love learning tips from friends with hearing loss. One of my favorites is to use your self-advocacy skills to request captioning for every video played in class.
Sean: I really enjoy hearing other people’s perspectives in the group. Even though we all have hearing loss, we have completely different types of hearing loss, devices, and experiences.
Create a BHSM Campaign: Amber: The BHSM video helps others understand both the positives and challenges of having hearing loss. It gives viewers a new perspective, educates them, and breaks down stereotypes. I encourage everyone to make a BHSM video to raise awareness about hearing loss for their school!
Abhik: I wanted to explain to my peers that I often feel part of two worlds. I can hear, talk, and attend mainstream school, but I am also deaf.
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 piece of cake and think it has to do with eating birthday cake, but no! Piece of cake means something is very easy to do. Like this: “I thought tonight’s math homework would be really challenging, but it was actually a piece of cake!”
How are you celebrating Better Hearing and Speech Month? We want to see! Tag @HearingOurWay or share with us at info@hearingourway.com.
H W is looking for families to
feature in Sibling Spot—email us!
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ng vercomi
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H W does Abigayle hear? With a soccer ball at her foot, a book in her hand, and two hearing aids!
Stories o Inspiring e You! Teens Lik Kids and
Abigayle's Faves H GAMES Just Dance on Nintendo Switch H BOOKS El Deafo Nancy Drew Look Both Ways: A Tale Told in 10 Blocks H MUSIC Christmas music year-round! H TV The Brady Bunch Stuck in the Middle H MOVIES The Parent Trap Freaky Friday H FOODS Pizza Avocado Hot dogs H QUOTE
“Treat others the way you want to be treated.”
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All About Me
Mom Knows Best
Hi, I’m Abigayle! I am 11-years-old and in fifth grade in Charlotte, North Carolina. I like to read, bake, play outside, and participate on my soccer team. I take tennis lessons and piano lessons, too.
My mom has been my advocate all my life. When I was younger, she would help me put together a ‘lesson’ about hearing loss and technology for my class. We would present it together, and with her help I was able to answer any questions my classmates had. My mom now serves on the advisory board for EHDI, the organization that ensures every newborn baby has their hearing screened before leaving the hospital, helping make sure others understand the importance of newborn hearing screenings.
Hearing My Way I have bilateral sensorineural hearing loss. In my left ear I can hear high pitch sounds—my audiogram looks like a reverse slope. My right ear has a more severe loss. My hearing loss is most likely hereditary because my dad has hearing loss, too. I started wearing hearing aids when I was one-year-old, after a long journey to being diagnosed with hearing loss. Today, I wear Phonak hearing aids with bluetooth technology and rechargeable batteries. I use an FM system at school and have a device that sends sound from the TV directly to my hearing aids.
Newborn Hearing Screening Something that is really important to me is raising awareness about newborn hearing screenings. When I was a baby, I had to stay in the NICU, the newborn intensive unit of the hospital, for 40 days before I had my newborn hearing screening. I was born with vocal cord paralysis and serious breathing issues (which I have now outgrown!). Because I was medically fragile, my screening was delayed. My parents share stories about how many ABR’s (the hearing test done on babies to determine hearing loss) I had and how tough they were. It was hard for my dad to accept that his new little baby would go through the challenge of life with hearing loss like he had to.*
One of Abigayle’s favorite hobbies is baking.
* For more on the parent perspective, see Liana’s story on page 8.
Left: Abigayle with her sister, Corinne. Right: Abigayle likes to have fun and stay ‘chill’!
Sister, Sister
Self-Advocacy Star
Overcoming Obstacles
My sister Corinne is 3½ years older than me. While I have hearing loss like my dad, Corinne has typical hearing like my mom. I know that sometimes it can be hard for Corinne to repeat herself when I don’t hear or understand her. But most of the time we are just two regular sisters, and we also get a lot of extra giggles and funny stories when I mishear something!
I don’t have an IEP or 504 plan because I go to a parochial school. However, I still have accommodations including preferential seating, microphone sound systems in all classes, FM system, and testing done in small groups. One of the best strategies has been pre-teaching so I can read the story and hear vocabulary words ahead of time before learning them in class. I am actively working on being my own hearing advocate by telling my teachers when I need something repeated, need to change my seat, or need to sync my FM again.
Even though I am usually really open to accommodations and support, I’ve been struggling to use my FM system as I get older. Sometimes I feel like it can draw more attention to me when I have to give the microphone to my teacher or coach. On the other hand, I notice that when I don’t use it, I experience more listening fatigue, feeling tired and grumpy, and struggling more at school. When challenges like this come up, I lean on my parents for support, and we figure it out together.
Reading & Writing
One Last Word
I really enjoy reading. I love when Hearing Our Way comes in the mail! At the beginning of the pandemic, CeCe Bell, author of El Deafo, offered a weekly book study. She really inspires me!
My current goals are to improve at sports and continue building my advocacy skills. When I grow up, I would like to be an orthodontist. Hearing loss helps me to be happy with who I am, and it doesn’t stop me from anything. It is a part of me, but I know there is so much more to who I am. Everyone is unique and has their own challenges that are a part of their story.
Support My family and I are huge fans of finding great support and resources. From the time I was a baby, I have received early intervention services and worked with hearing teachers, audiologists, advocates, auditory verbal therapists, and even music therapists and occupational therapists. As I’ve gotten older, I still like to embrace anything that will help improve my hearing, speech, coordination, and balance. Ms. Jenni and Ms. Margaret were my first two teachers that came to my house to work with me and my family on listening and spoken language. They helped us discover HITCH-UP, a familybased support group, where I have made so many friends with hearing loss!
Ear Gear I am a soccer player and even rain won’t stop me from playing, but my mom does get nervous about my hearing aids getting wet. Ear Gear guards help protect my hearing aids from getting damaged by moisture caused by rain and sweat.
Be on our next cover! info@hearingourway.com
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Newborn Hearing Screenings: A Parent’s Perspective t fee l? Ho w wo uld a new pa ren s (page 6), In Overc om ing Ob stacle r he ar ing los s Abigayle sha red th at he r ne wb orn diagn osi s came after he at it wa s a ha rd th d he ar ing screen ing an time for he r pa ren ts.
Liana is a new mom whose daughter Lily was diagnosed with hearing loss at nine-days-old following her newborn hearing screening. Liana shares how she felt when she heard the news. When Lily was diagnosed with hearing loss, a million thoughts raced through my mind:
Hearing loss?
How would it impact her life?
Would she ever hear me say, “I love you?”
I had never met a person who was deaf or a child with hearing loss. Her dad and I had become parents just a few days ago. Now we had to become advocates, too. It seemed like an uphill trek without a map for guidance. But luckily, the roads had been well-paved. We found a great audiologist. We had a plan. We didn’t have to move mountains, but we had to get ready to climb one. Lily deserves to grow up knowing that her hearing doesn’t define her but is a part of her. Just like so many other wonderful things that are a part of her:
Lily has brown hair.
Lily is half Italian.
Lily hears differently.
We will help Lily build confidence and courage so she can reach her dreams and climb her own mountains. And I stopped questioning whether Lily has heard me say, ‘I love you.’ Because Lily has taught me that love isn’t something you hear. It’s something you feel. I know that Lily knows she is loved. Regardless, I’m still going to tell her I love her every chance I get.
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Have you ever thought about what it was like for your parents to find out about your hearing loss? Ask them about their experience, and share your story with us at info@hearingourway.com.
Love is in the Air Have you ever wondered how hearing loss might affect dating and relationships? Caroline, 20, a sophomore in college from St. Louis, Missouri, with bilateral cochlear implants, shares her relationship story. Hayden and I have known each other since middle school but became closer in high school. That’s when he asked me to Homecoming, and we have been together ever since. We love to travel, go to concerts and sporting events, and watch movies together. Hayden also has hearing loss and bilateral cochlear implants. We both knew and understood deafness, so we had a huge connection right off the bat. But whether you are dating someone with or without hearing loss, I think the same three things are still most important in a relationship.
1. Confidence
I am confident about my hearing loss; I never hide my cochlear implants with my hair. I went into the relationship feeling good about myself and my hearing loss.
2. Openness
I share my feelings about my hearing loss and about all parts of my life with Hayden.
3. Communication
While hearing loss can make communication harder in some instances, it can also be an advantage—like when we are able to lip-read and sign to each other in noisy environments. No matter what, communication is key in a relationship.
My relationship advice to you is just be who you are. Follow your heart and choose who you like. There is a lot more to a relationship than hearing loss!
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Looking for awesome educational resources designed just for kids with hearing loss? Check out TOD on Wheels, where you can find worksheets, games, teacher’s guides, and more! www.todonwheels.com • @todonwheels
Dear Sophie,
the sixth grade. When
years-old in Hi, my name is Ellie, I am 12ring. I had cochlear implant surgery
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From, Ellie
A Note from Ellie’s Moyfmul, loving girl. She is a
pendent, jo Ellie is a spunky, inde erican teach others ASL (Am to s ve lo d an r lve so problem t, smart, ters think she is swee Sign Language). Her sis ht all of e enters. She has taug sh om ro y an up s ht and lig out things patience or to think ab us a lot—whether it’s typical ings that people with th lly cia pe es ly, nt re diffe granted. hearing may take for
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An exciting PEN PAL PROGRAM presented by Ryan Brady with Hearing Our Way !
We all love our birthdays, but kids with hearing loss sometimes have a bonus celebration—the anniversary of the day they got their hearing devices—their hearing birthdays. Alexis, age 2 ½, celebrated her second hearing birthday of her Phonak Sky hearing aids. Happy hearing birthday, Alexis!
We want to see photos of your hearing birthday celebration! Email them to us at info@hearingourway.com and you may be featured in Hearing Our Way.
Parents, want to surprise your child with a hearing birthday shoutout? Get in touch via email: info@hearingourway.com
sophie's tales is something to bark about!
Aza le a lo ve s re ading He ar ing O ur Way an d yo u w ill , to o!
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Ashtyn, age 13, is a seventh grader from Oswego, Illinois. She plays on a girls travel volleyball team and also enjoys dancing, makeup, and TikTok. Ashtyn was diagnosed with hearing loss at the age of three and received hearing aids at four-years-old. She still remembers getting to choose the color (blue!) of her first set of hearing aids—there weren’t as many color options then as there are today. Today, she wears Phonak hearing aids with bluetooth, which she finds so much better compared to her original ones. Ashtyn attended her IEP meeting for the first time last year. She loved seeing the other members of her IEP team and feeling like a part of the group. She created a brochure about herself and her accommodations, such as preferential seating and FM system, for her teachers. Kay Ariano, Ashtyn’s itinerant teacher, says, “What I love about Ashtyn is that she has such a natural way of making people feel comfortable when talking about her hearing loss. She has a kind and friendly demeanor when she advocates for herself that makes both staff and students want to help make sure she gets what she needs. She is a role model for other students.” Ashtyn is open to sharing about her hearing loss with others. She is not embarrassed about it; it is just a part of her. Her message to other kids is to never give up if you can’t hear something and to always be yourself.
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