Archive for August 28, 2017

Jessica Stern: JUST GOOGLE IT

August 28, 2017

“Information helps you to see that you’re not alone. That there’s somebody in Mississippi and somebody in Tokyo who all have wept, who’ve all longed and lost, who’ve all been happy. So the library helps you to see, not only that you are not alone but that you’re not really any different from everyone else.” -Maya Angelo

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In the 90’s, there was no Google website to go to when you wanted to search for tips on teaching your deaf child how to speak. There was no online forum where you could talk with other parents in your shoes in order to find out what worked for them. There was no app on your phone to help teach you ASL. Parents were left to their own resources and gut instincts, they were left with vague recommendations from their audiologists, and they were left with hand scribbled landline phone numbers of someone that had a deaf child.

My parents were in those shoes of not knowing what laid ahead for them. They had just been told that their 15 month old baby daughter was profoundly deaf in both ears as a result of Meningtis. They lived in rural Minnesota in a town of 1,200 people. The only deaf people in town were 80 years old or more. My parents desperately needed a family to empathize with and to relate with the issues they were going through.

The moment that gave them hope was getting a phone number for a couple in the Pilot Parent program. Dennis and Deb were the parents of a girl who also had Meningitis as a baby, and had been deaf for about 5 years. This family was the Morrows and they were our saving grace. Over the next decade, our moms became very close and learned to rely on each other. There were many phone calls to ask:

“Is this right?”

“Is this normal?”

“Tell me I am not ruining my baby…”

With everything they shared, the most important thing Deb told my mom was, “You will meet a lot of experts that will tell you what to do, but remember, the most important expert in her life will be you.” We were one of the lucky families, not everyone was able to find this type of guidance.

CHALLENGES BEYOND THE FRIENDSHIP

No matter the motherly advice my mom received from this family, there was always still a lack of professional advice based on real life cases. One of her biggest struggles was that she was not sure what accommodations the school system was legally required to offer. In an effort to know more, she joined a state board in order to surround herself with others who knew more.

With this support system, she was able to understand so much more when it came to IEP’s and services. In fact, with the expertise of other board members, I was the first D/HH child in Minnesota to have the public school system help financially with an interpreter within a private school. I did not stay long at the parochial school but it was something that my mom’s hard work and research helped make happen.

A significant lesson that my parents learned right off the bat was that you can and should try every tool out there. Each person is different and each person will benefit differently. Instead of looking at different routes as successes and failures, they looked at them as crossing out the items that didn’t work and keeping the items that did. There were many things that worked for us, and even more things that didn’t.

“YOU WANT THREE QUESADILLA MEALS!?”

We had a rule they made when we went out to eat because dining out was a chance for my parents to teach me how to be assertive. This story often makes my parents seem like they did not care, but it is the opposite… They cared so much that they struggled to watch me go through the situation of dining out. They started me with this practice at a very young age.

When it was time to order, whether it was McDonalds or Perkins, I was left to fend for myself and it would be a conversation between the waitress and me. If questions were asked by them, I had the chance to smile and nod or I had the chance to ask them to repeat themselves.

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For many years, my dad did not order a meal for himself because they knew with certainty that I would not get the food I ordered and he could eat my food. In fact, when I was 16, I accidentally ordered three quesadilla meals instead of three quesadillas. That was a $48 mistake…

As a child, I was the picky eater who would order a cheeseburger with no mustard, no onions, and no pickles. After smiling and nodding at the clerk, my order would come with extra onions, extra mustard, and pickles. My mom would just hand me more money and send me off for a second chance.

For years it seemed like I would not learn, but slowly and surely I began to ask the waitresses to repeat their questions, I would tell the cashier that I was deaf, and I would repeat my order back if needed. Now, as a 30 year old woman, I am confident going through a drive through and telling them I will see them at the window to give them my order.

“I’M A BARBIE GIRL, IN A BARBIE WORLD”

Music was one of those things that we struggled with trying to figure out. When a kid with hearing aids wants to learn lyrics to a song today, it’s easy to go to MetroLyrics or Lyrics.com. A song can be played on repeat until the feeling of the beats becomes natural and the words become second nature.

I grew up in the days where radio was the source of music and songs could not be played on repeat on iTunes or YouTube. There was no way to look up lyrics beyond learning them from sound.

In true family love fashion, my parents and sisters came together to make music work for me. My older sister, Dani, would sit in the car and record the radio to a cassette drive. Then, my mom and dad would listen to the cassette and write down the lyrics on a sheet of paper. They would have to listen very carefully, mulitple times, in order to make sure they were on track with the words. To this day, my mom always laughs and says that no grown man should know the words to “Barbie Girl” by Aqua.

There are going to be challenges and there are going to be solutions. The solution might not be ideal, but there is almost always a way around it.

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THE FUTURE IS BRIGHT

If there is any advice I have for parents, it would be that the future is bright. There are so many opportunities out there for support and resources. I would be confident saying that my parents would be jealous of the options out there today as you begin this journey with your D/HH child.

Take advantage of everything you can get your hands on. Go to the family camps, try out the different technology options, follow blogs of those who have gone through this already, and never set limitations for yourself or your child. And if all else fails, at least you have Google, Siri, and Alexa to ask for help.

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Shelia Cargile: “More Than Fine”

August 17, 2017

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Shelia Cargile, director of Hands & Voices Mississippi, passed away in a tragic car accident on May 28, 2017.  She passed before she got to see Guide By Your Side implemented in Mississippi. I wasn’t sad for Shelia. I know where she is. I know she is with her mom. I was sad for those of us left here: John, her husband of 19 years, her children, Eli, Emily and Audrey, her twin sister Sherri, her father, and hundreds of friends. I believe the most important thoughts about Sheila belong to her husband and children. Sheila Cargile was a woman devoted to her Christian faith – as is her family.  Their words will reflect this faith and aren’t intended to offend anyone.

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“She was loving, always reading to us, she tried her best to make sure she was doing right, she was and is a child of the most high God, she loved to sing and was on the praise team, she was always smiling, she fought her good fight and I believe that if we fight ours we can see her again someday.”

Emily Cargile

“I love my mama because she was always loving and gentle, she was a great teacher, she loved Jesus, and she was more than just a mom. She was an amazing, fun mom that was also a great singer.”

Audrey Cargile

 

“Everyone has a first ‘true love.’ My Sheila/mom is my first true love. She was/is the definition of beauty and restoration. She carried herself in a more intelligent and Godly manner than 90 percent of people alive. She was fearless and discerning. She was exactly what I look for in a woman.”

Eli Cargile

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“Sheila: a precious gift from God. A beautiful, remarkable wife and mother. The most diligent, sincere, genuine person I’ve ever known. Always smiling and uplifting to everyone around her. A vibrant woman who sought God in everything. She wanted the best for everyone and tried to help them achieve it. She was selfless, joyful, an absolute treasure. Having her as my wife is my greatest achievement.”

John Cargile

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Shelia was fiercely loyal to and madly in love with her family. I have only known her for four years, but felt like we had been connected for a lifetime. The stories she told of her family were beaming with pride. Shelia had a way of being a cheerleader to everyone. She was always smiling. She was a natural encourager. Sheila loved. She loved people. She loved animals. You never knew where Shelia’s adventures were going to take her and her kids. One day she would be tutoring homeless kids. A few months later, she would be loving on shelter animals. She was all things to all people. She was and is a champion for the deaf and hard of hearing children in Mississippi.

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Shelia was an advocate. Through her work with Hands & Voices Mississippi, she touched thousands of lives. I loved being a part of the “Shelia & Julie” that worked to get MS H&V Guide By Your Side started with the help and guidance of EHDI-M and Hands & Voices headquarters. We we’re equally obsessed. Life got in the way sometimes, but we always worked together to navigate our way through being accidental leaders. Sheila had a way of talking to you that was so empowering.  When dealing with tough situations, she would exercise restraint in a beautiful way. She was sugary sweet. When you were with her- you felt like the only people in the room.

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We had a song together. “More Than Fine”. Shelia wanted “More than Fine” for H&V MS (GBYS) and the families she served. She wanted “More Than Fine” for her husband and kids. Sheila will never be replaced. It will take multiple people to carry on her legacy.  She was Chapter Leader, ZOHO manager, newsletter mailer, event coordinator, legislative maven, meeting and workshop attendee, constant networker, consultant for many different facets – just to name a few- joyfully all while homeschooling her three kids and prioritizing spending time with John when we had off of work. She did it all. Sheila is a giant in the faith, and a giant to her cause I, along with many others, feel like we can’t do this without her. We won’t have to carry on this work without her. She searched out, cultivated, and even equipped us with the skills we need. Many people have come forward to take over portions of what she did for MS H&V. Like a friend and Board Member Stacy DeZutter said, “We are going to honor her by carrying on her vision”.

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For Shelia, H&V MS GBYS was birthed despite having to work through pain and travail. Shelia, I thank you for your friendship and I love you fiercely. Thanks to you – your family, friends, and MS H&V will be “More Than Fine”.  On July 15, 2017, Hands & Voices MS Guide By Your Side posthumously honored Sheila in recognition and appreciation of her many years of distinguished service for the deaf and hard of hearing children of Mississippi with the ” More Than Fine” award presented to her husband, children, and sister.

It’s time for all who may to continue and rise up so we can be for her children and those to come what Shelia tirelessly was to ours.

“We are going to honor her by carrying on her vision,” said Sheila’s friend and Board Member, Stacy DeZutter.

Julie Seawright

Program Coordinator
Hands & Voices MS Guide By Your Side

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Judy Yang: A Passion for Badminton

August 15, 2017

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My name is Judy Yang and I am 18 years old. I’m the only deaf child in my family. My family is from China and I was born in the United States. My parents found out that I’m deaf when I was two years old. They were upset and they didn’t know what to do with a deaf daughter at first. When I was six years old, I received a cochlear implant. 

After my parents divorced, I moved to Chicago area with my mom, two brothers, and my grandparents when I was seven years old. My family moved so that I could attend a school with a deaf program. I was so happy to learn many new things and make a lot of deaf friends at my school in Chicago area because I struggled in school and had no friends in Michigan.

My uncle was a competitive badminton player when he lived in China and he took me to a park district badminton court and taught me how to play for fun when I was in third grade. I enjoyed playing badminton a lot because I had so much fun playing against my family or other members for competition.

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When I was 7th grade, I decided to become a serious athlete in badminton. My mom took me go to my uncle’s own badminton place to meet a new coach, Ilian Perez. Ilian had just moved to Chicago from San Francisco and I was his first student.  It was also his first time to meet a deaf person and he didn’t know how to communicate with me. Ilian tried to teach me how to play badminton competitively, but I couldn’t understand what he said. He asked my brother Justin how to say “fast” in Chinese then he said it to me, but I still couldn’t understand him. He decided to demonstrate the moves he wanted me to do so I could follow his moves during training.

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Today, I usually gesture and read his lips in our communication with each other. I follow what my teammates do when my coach tells them what to do, because I can see what they doing with my eyes rather than hearing it. Deaf people have the power to use visual cues with their eyes than hear!

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I played four years of badminton on the varsity team at Hinsdale South high school in Illinois. In 2016, I became the state champion. I had so many achievements in both badminton and academics. I’m so grateful to have my teammates, family, friends, and coaches–especially my mom–because they all encouraged me not to give up on playing badminton during high school.

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