Deaf and Hard of Hearing Teens: Fitting in When We Stand Out

The Journey through Adolescence: Fitting In When We Stand Out

Winning Sportsmanship

 

The adventure of adolescence is full of discovery both socially and within ones’ self, and even more so for someone who is deaf/hard of hearing.  Adolescents seemingly expend constant energy to become strong, unique individuals while at the same time trying to fit in without standing out.

For young people who are deaf or hard of hearing (DHH), adolescence provides the opportunity for them to own their hearing without it becoming their central identity. People do not want to be defined solely by their audiogram, technology, or by the accommodations they use.

Supporting our youth as whole people who happen to have hearing differences may lead to increased acceptance of self.  When a group of teens who are DHH were asked what they would wish for in a perfect world, they did not wish for normal hearing. Instead they wished that “people wouldn’t think of us as impaired or broken”. They wish that people would think of them as a teen first, person with hearing loss second.  At the Colorado Hearing Foundation-sponsored Journey Through Adolescence Conference (Children’s Hospital Colorado March 2017), Jonah Berger, therapeutic mentor, stated “…disability should not be in charge, we are in charge…” Adolescents can learn to take charge and become confident with who they are as they choose their path in life.

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To support confidence and self-advocacy for teens who are DHH–the strategies below, built around pillars of growth through adolescence, may help them on their journey of self-discovery

 

  1. EMPOWER ADVOCACY:

Empower advocacy by teaching adolescents how to become active in their audiology and educational appointments. Glaring at their audiologist or counselor may give them a feeling of control, however, it does not build partnerships. They need to tell these professionals what makes them cringe, what makes them grumpy or frustrated in school, with their technology, or being deaf/hard of hearing.  Teens should become the expert about their own hearing. They need to describe what makes them hear better and how they prefer to communicate. Learning the skills of self-advocacy through partnerships will be an invaluable skill as teens mature into fully independent adults.

 

  1. OPPORTUNITIES FOR CHOICE:

Advocacy works best when you understand your hearing, your technology and what works well for you.  Adolescence is a time for DHH teens to try new technology, strategies and communication styles to have full access to the information that their peers are receiving.  Encourage your teen to explore their options. Sometimes the hardest part of making choices is taking the first step to try something new.

 

  1. BALANCE INTERDEPENDENCE WITH INDEPENDENCE:

Interdependence is how we rely on each other.  Independence is how we rely on ourselves.  Healthy interdependence builds the foundation for future independence and should start early.  The goals for independence for a teen that is DHH should be the same as for their siblings.

For example, teens should be expected to get up on their own and get ready for school in the morning. DHH teens can use vibrating alarm clocks or other technologies to develop this independence. Staying home alone and knowing what to do in case of an emergency are valuable skills for all teens.

 

  1. BEYOND HEARING TECHNOLOGY:

Technology is rapidly advancing and can remove some of the typical and frustrating communication barriers.   To stay connected with friends, teens can now access Instant Messaging, texting, social media, real time captioning apps, video relay.  Internet safety and supervision is critical and must be taught to all children and youth regardless of their hearing differences. Additional information on cyber safety may be referenced at

www.handsandvoices.org/resources/OUR/2014/V17-3_cybersafety.htm

 

  1. CULTURAL LITERACY:

Teens who are DHH benefit from being informed on current teen culture.  Incidental language and learning is rapidly acquired during adolescence through music, movies and TV and are part of the adolescent culture.  There are multiple ways for adolescents who are deaf/hard of hearing to connect with the typical adolescent world and be a part of that culture.  This might include YouTube, videos, lyrics, technology and interpreters that specialize in signing music and live concerts.  Being a part of a team or other activities give the teen another identity besides their hearing.

 

  1. SOCIAL COMMUNICATION:

During pre-adolescent years, a variety of skills are developed through play and guided by adults.  During these years, parents and teachers often help with miscommunication or clarify missed information.  During adolescence, the development of friendships requires more communication skills and less play.   Adolescents need to develop the skills to repair communication breakdowns, which include asking for clarification and/or asking for information to be repeated. Adolescents have the responsibility to increase their ability to be better understood, whether that be through spoken language, sign language or both.  Multiple opportunities to socialize with friends and family members will increase their confidence and ability to repair communication breakdowns.

 

  1. IDENTITY:

As William Shakespeare said, “To thine own self be true…”  Often people with hearing loss are not aware of how exhausting good communication can be. When exhaustion happens, it is easier to revert to faking or pretending that we are hearing rather than asking for repetition for the third, fourth or fifth time. Encourage youth to be true to themselves and to the people with whom they are interacting. Responding with “just forget it”, is unfair to all. People with typical hearing do not hear everything and ask for repetitions with confidence.  Let teens know that it’s okay to take a break when they are working hard to hear and to let people know that is hard to hear everything that is being said.

 

 

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  1. SELF-ESTEEM:

Let’s be clear, everyone’s self-esteem is fragile. This fragility is not a flaw to be corrected, it is a human condition to be respected in everyone. Like all adolescents, teens who are DHH struggle with self-esteem and self-identity. Hearing is another facet of self-esteem and self-identity.  Teens who are DHH may feel comfortable with people who are hearing, people who are deaf or people who are hard of hearing, depending on the time or the social situation. Make sure they know that they do not need to choose only one group, and that the group is not their self-identity. The development of self-identity is a life-long, fluid process.

 

  1. ROLE MODELS:

You can’t be what you can’t see. DHH role models or mentors are the best kept secret but it shouldn’t be that way.  If teens, parents or professionals are curious about the possibilities and successes of people who are of hearing in today’s world, then seek out the people that are on that journey.  As you and your teen meet people and cultivate stories, keep in mind that your child will have their own unique experiences and journey. For perspectives from teens may be referenced at www.handsandvoices.org/resources/dhh_adults.html

 

  1. CONFIDENCE:

Teasing and bullying will happen whether you are deaf, hard of hearing or if you have typical hearing. Bullies are victims of low self-esteem too.  Bullies attack perceived weakness.  Help your teen learn a variety of skills to get through all kinds of situations. Kidpower.org is an international organization that provides trainings to increase safety and confidence. Your DHH adolescent can teach the community how they want to be treated, what they need for respect, and what they have to offer. The respect one has for oneself becomes the model for the respect one receives from others.

 

by Stephanie Olson, Co-Director of Deaf and Hard of Hearing Infusion at Hands & Voices

and

Lynne Canales, Itinerant Teacher, Englewood Public Schools

 

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Jessica Stern: JUST GOOGLE IT

“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”

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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

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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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You Can’t Possibly Provide Support Without Bias

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I was wearing my “What’s your sign? ASL” t-shirt one day when a friend pointed it out and asked, “Isn’t that showing your bias when you display your communication choice? I thought Hands and Voices was ‘neutral’ when it comes to favoring communication choices?”

There are often a lot of misunderstandings about supporting families with deaf and hard of hearing children without a bias toward communication choices. “You can’t possibly provide support without bias,” people often challenge us at Hands & Voices.  I frequently see the word “neutral” associated with the idea of supporting families. In fact, I wrote about it here: Neutral is a Shade of Color, Not an Organization.

If anything, the opposite is true. The people who become a part of Hands & Voices are pretty passionate about a lot of things when it comes to supporting families with children who are D/deaf and hard of hearing. When you truly operate without bias–you are able to join a variety of organizations, mingle with people from every communication experience, be comfortable with every combination of choice, and open-minded about the experience of raising D/deaf and hard of hearing kids. No one blinks twice when you attend an event centered around a certain communication philosophy or technology. Because at Hands & Voices, we know that the more you learn, and the more you experience, and the more you open your mind–the more you can provide to families on the parenting journey.

Here’s more on Supporting Families without Bias.

Yes, you CAN celebrate your own experience, choices, and journey. You CAN share your expertise and experience in ways that do not manipulate another person’s journey. You CAN mentor/guide/educate without the intent to manipulate, belittle, or manage a family’s experience.

I have often said, “My journey does not define your journey.” Families can take what they want and need from my experience and frame it into ways that helps their own experience. There’s quite a difference in saying, “Let’s explore ways you can provide communication access for your child,” versus “I think you should provide your child with _________.”

You can take the journey “with” the family, not “for” the family.

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In my early days of being a Deaf Mentor in early intervention, I had families who opted for cochlear implants for their child. They asked me questions that I didn’t have answers to–I had hearing aids. So we learned together. I brought in others who could answer the families’ questions. I went above and beyond to learn everything I could. I went to the hospitals and provided support before and after surgery. That’s just one example of how you can provide support along the journey–even when the family’s experience is quite different from yours.

When people meet me, they often make assumptions based on my expression of communication. They usually throw me in one communication camp or other, based on what they see/hear at the time. What saddens me is that I come across this communication marginalization almost on a daily basis. Through my work with families and young deaf and hard of hearing adults I see this happening all the time: separation, judgment, and segmentation based on communication skills and choices. I’ve seen families torn to shreds on the web about the choices they make for their D/deaf or hard of hearing baby/child.

It breaks my heart.

I believe in the mission and the purpose of Hands & Voices:

Hands & Voices is dedicated to supporting families with children who are Deaf or Hard of Hearing without a bias around communication modes or methodology. We’re a parent-driven, non-profit organization providing families with the resources, networks, and information they need to improve communication access and educational outcomes for their children. Our outreach activities, parent/professional collaboration, and advocacy efforts are focused on enabling Deaf and Hard-of-Hearing children to reach their highest potential.

I’ve said this before, and I share it here again:

At any given time, Hands & Voices is whoever is a part of the organization. Families and individuals are not the sum of their communication experience and we don’t identify our Hands & Voices organization merely by those choices. We do our best to include everyone who wants to be a part of the movement of providing support without bias to families. Whenever we stumble along the process, we try harder yet again. The bottom line is to support families along the journey of raising deaf and hard of hearing children. We all have the same goal in mind: well-adjusted, successful kids.

As for being “neutral,” to me, that’s a shade of color, not an organization. What I love seeing instead is an organization that is passionate, vibrant, and colorful– an organization which is made up of amazing, diverse families, professionals, and individuals who celebrate the many different ways there are of being Deaf/deaf and hard of hearing.

Now that’s Hands & Voices. And I invite you to be a part of it.

www.handsandvoices.org 

Karen Putz

 

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Kathy Loo: Learning What is Best for My Son

Growing up, I never saw myself being the parent of a deaf child. Although my mom and brother are hard of hearing, it was never more to me than just part of  who they were. It wasn’t even that big a deal in my household.

The only deaf person I recall knowing aside from them was a friend from high school.  But again, it was just part of who he was.

We didn’t even think much about deafness until we started learning sign as a communication bridge for our youngest children. We started learning to sign when our oldest daughter was one year old and I was about 4 months pregnant with our youngest.

After we started learning we wanted to know more. We became involved in a deaf ministry near our home and started taking classes through Sacramento State.

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Little did we know, it would lead us to deaf adoption–and three years ago we brought home our son. Lots of time during our adoption process was invested in trying to figure out what was right for us. Everyone had an opinion. We even had some strong ones of our own, but that all changed the day we met him.

Suddenly it wasn’t about what was best for us, but what was best for him. It wasn’t about what we envisioned, but the potential we saw in him. Our first night with him he was so starved for communication that he soaked up around 65 signs.It was impressive  the amount of language he  gained in those first two weeks, after 8 years of minimal language.

At some point early on with us he discovered there were two worlds going on around him. Until he saw us signing with him and talking with each other, I don’t think he realized that sound actually existed.

He became enamored with the concept of sound and discovering how it works.

At that point we began to question our own biases. This was all unraveling as we watched a friend struggling with outside opinions of her son getting implanted. Was that a battle we even wanted to tackle?

We realized that no one had to answer to him but us, about what tools and opportunities we did and didn’t provide. We decided that any issue someone had based on a choice we felt was right for our child was not our problem, but theirs.

We opted for the implant and he was well on his way to discovering a world with sound. Unfortunately,  it malfunctioned a few months in, despite every effort to correct it.

We’ve since opted to do a 2nd surgery to see if replacing the internal equipment will correct the issue. We are optimistic, but no matter what we know we can stand before him and say “The only thoughts that mattered were yours. We followed your lead.”

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The most important things we’ve learned through this whole journey are:

  1. That WE are the experts in our child. No one else has been assigned the duty to love and care for him and provide his physical,  mental, emotional, and linguistic needs.

  2. It is important to surround yourself with people who support, love, respect, and understand you. Even if those people haven’t or wouldn’t make the same choices for their child that you would. They fully understand that you have the most skin in this game. No matter what, as parents we always do the best we know how and we will never get it perfect.  Despite what others think, no one has a perfect answer for raising ANY child.

  3. Every child is different. Even if they are in the same household.

Remember, we started signing with our oldest daughter. At the time, she was believed to have normal hearing. That has since come under question in the last year. The supports we provide for her aren’t the same as for our son.

There is no one size fits all. They have completely different needs and what would work for one isn’t as helpful (if at all helpful) for the other.

I encourage you to stay strong, be your child’s loudest advocate, and know that it is okay if you switch gears or make mistakes.

As parents of deaf children, we face challenges that most other people don’t have to consider in everyday life. The only thing we can really do right is to give it our all and hope for the best. Most of all, know that your best is going to be different from someone else’s and that’s okay. 20160131_142735-1

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Elizabeth Albers: Language in Any Form is a Beautiful Thing

We are the Albers Family, a homeschooling family of nine with two children who have severe to profound hearing loss. We entered the deaf/hoh world three years ago when we adopted our son, Matthew. He was five years old with severe hearing loss. We were told that he could hear and talk with the help of his hearing aids. We thought, Okay, we can handle that! We knew that his hearing loss might be worse than what was presented in his file, but we clung to the hope that he could hear and talk with his hearing aids. We began learning some sign language, and researching deafness. We had moments of second guessing ourselves, but ultimately we knew he was our son and that we would do whatever was needed to help him.

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The day we got him was a whirlwind. He came to us showing us pictures we had sent to him. He had no hearing aids. They told us they were broken. That first day he soaked up what little sign language we knew. We remember his first signs, same and different. We knew we had a smart little boy on our hands.  The next day they brought us his hearing aids with no batteries. We managed to find some, and we were so hopeful when he put them in his little ears. He knew exactly what to do.  We tried all the noises we could, there was no response. Our hearts sunk a little. That night, while in China, we got on lifeprint.com and started taking the free on-line courses for ASL. We knew we needed to up our game. This little boy was taking in all the ASL that we could give him. He wanted to know the signs for everything. He was soaking up language for the first time, and he was so excited about it. We wished we would have learned more.

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After bringing him home we started private ASL lessons with a deaf tutor, continued to learn through lifeprint.com, scoured our county for deaf people (there weren’t many), met as many deaf people as we could, did hours of research on the computer and went to multiple audiologist and ENT visits. After several months with new hearing aids that were helping him just a tiny bit, we decided to explore Cochlear Implants. We were torn, because there was such a divide on what the right thing to do is within the deaf/hoh community. Ultimately, after lots of prayer, watching Rachel Coleman’s “One Deaf Child” , and doing more research, we knew we wanted our son to try it. Ten months after being home he was activated. At first he didn’t like the sound, but he grew to enjoy new sounds over the coming weeks and months. I remember about a month after being activated, he heard the sound of a bird chirping outside, and he wanted to know what it was. We worked closely with our audio-verbal therapist who was able to help us know how to teach him to listen. His speech began improving significantly. We knew we had made the right decision.  We’ve continued with English, using sign language when needed. He’s learning to read and write at home and is quickly catching up with his peers.

Fast-forward 3 years. We are now home with another profoundly deaf son, Isaac, who is 4 years old. He was adopted 7 months ago with no language. Unlike Matthew, he had profound hearing loss. There was no hope of hearing aids helping him. But we were more prepared this time. We had so many things in our tool belt. We had a better knowledge of ASL and the deaf/hoh world, we knew the resources that were available to us, we knew what the journey to Cochlear Implants would be, and we had even learned Cued Speech by going to Cue Camp Cheerio. We decided to pursue cochlear implants and got the ball rolling with that right away with our ENT and audiologist. Right now he has been activated about 7 weeks. He’s starting to respond to our voices, but still very far from understanding speech. Since we knew that we wanted to give him access to language right away, we started with sign language from the moment we met him. He quickly grew to expressively use over 150 signs. His first sign was car. He loved looking out the cars through our hotel room in China. Once he had a good grasp of basic signs, where we felt like could effectively communicate his needs to us, we moved to using cued speech. We’ve focusing on using and teaching him cued speech for six weeks. Our whole family knows the system and continues to work on fluency. Receptively he understands a many of the basic phrases we use, and expressively he knows about a dozen words. Every day he adds a few more words to his vocabulary. It’s quite amazing to see his progression.

3_bothboys

This journey has not been simple. There have been ups and downs. Moments of self-doubt. But we keep going. We keep learning and doing what we feel is best for our deaf children and our family as a whole. We’ve learned that the process is always changing and growing too. Their needs may be different year to year. We’ve had to, sometimes, ignore the voices around us, telling us what we HAVE to do for our children. There are an abundance of opinions out there when it comes to raising and educating deaf children! We have, more than ever, learned over these last 3 years that every child is different. There is certainly not a one size fits all or one language fits all or one education fits all when it comes to deafness. The biggest joy of this journey is seeing our boys, who had no language those first few years of their lives, pick up a new word through sign, speech or cue. Seeing their eyes light up with understanding is an amazing thing.

Language, in any form, is a beautiful thing.

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Support for Military Families with Deaf and Hard of Hearing Children

jenny and chelsea

Have you ever thought about what it would be like to be a military spouse? Have you thought about trying to explain the lifestyle to others?  How do you describe a life that is so far outside the experience of most others?  Which part of this unique lifestyle warrants a mention?  Some of us delivered a baby, raised our children, and continued on our lives while our sponsor (our active-duty spouse) was overseas.  Others made the move to a new duty station on our own so we could begin life there and make the transition back home easier for our spouse.  Nearly all of us have spent many months on our own, keeping our lives, and by extension, our spouses’ lives running.

Because we are so often on our own, in a new place, we tend to bond with those in similar situations.  There is beauty in the “sisterhood” that develops from sharing common experiences related to a marriage to a service member.  We understand the stresses and strains that go along with receiving official orders to move across the country or the world.

A Permanent Change of Station (PCS), – or move, for those of you not military-affiliated – begins months in advance, when the Active Duty Service Member gets a list of available positions, which they must rank in order of preference.  That preference is not simply about where you would like to live.  Discussions revolve around not only that, but also entail which positions would be advantageous for your spouse’s career, what schools and communities are like in the area, and, for those of us with children with special needs, where the nearest medical facility is that can handle our child’s needs.  After much discussion, the sponsor turns in his list to his branch manager or detailer, who actually places the service member into the assignments, based on the needs of that particular service branch.  Then you wait… often for months, to discover where you are headed.  Sometimes you get one of your top three choices.  Other times… you do not.  Sometimes, you get an assignment, only to have it changed weeks before the actual PCS.  Once the orders are actually cut, you are *usually* good, but you will never be sure until you are physically there.  Once you receive those final orders though, it is time to Google, research, reach into that rolodex and start making calls.

Now the fun begins – the actual moving process.  People say, “Oh, but you have packers who come and move everything for you. That’s great!”  Actually, while it is helpful in the grand scheme of regular moves, take a minute to think about how you would like three total strangers coming into your house and packing everything you own.  So… the day before the movers arrive, you hide everything you don’t want them to pack in a bathroom. This includes any trash, your IDs, clothes for the duration of your move, etc.  You tape a sign over the door that says “Do not pack” and then spend the next day following the movers around to ensure that everything is packed and labeled properly, and nothing that should not be packed accidentally winds up in a box.  All of this is happening while juggling babies and fielding phone calls.

The movers arrive, and 24 hours later, everything you own is boxed up and on their way to your new location. Your vehicles are stuffed with everything you need in the meantime.  You attempt to carve out room amongst the pillows, clothes, paper plates and assorted “keep the kids happy” toys to actually seat all the members of your family.  Little Susie surely will not mind holding that roll of paper towels for the duration of your 15-hour trip. Because only the items you specifically remembered to pull out of your house prior to the pack out are with you, you will make at least one trip to the store to buy a spatula or coffee pot (!!) that you forgot to snag before all of your household goods were packed.  As you can imagine, PCSing is a very stressful time for families.  Now, let’s talk about how this applies to the family of child with hearing loss.

Remember when you first found out that your child had hearing loss?  How you embarked on a journey that meant adding many new people to your life: Audiologists, ENTs, SLPs, D/HH Specialists.  That is just the hearing portion of it.  If your child has other challenges, you worked your way through referrals and insurance, all while waiting for initial appointments for those specialists, as well.  For older children, you may have worked with your school district on an IEP team to determine what services your child needs to help them have access to all of their studies, as well as support during them.  Each new meeting is a little nerve-wracking as you work your way through understanding your child’s diagnosis and learning to relate to each member of his/her medical and educational teams, individually, in a way that (hopefully) is productive.

Once services started, each service provider had to build rapport with your child.  This means that it may have taken anywhere from weeks to months for your child to trust and respond appropriately to providers, especially if the child is very young or has other challenges.  Now, imagine that you get to repeat this scenario (minus the huge learning curve regarding diagnosis), every 2-3 years.  Obviously, the combination of moving coupled with ensuring care and services for your D/HH child can be incredibly daunting.

What if military families had a head start?  For as long as there has been an American military, families who relocate alongside their active duty member have become experts at finding “the best” in each new area.  These families are amazing at networking, for their own sake, certainly, but most notably for helping fellow dependents out.  The era of social media made this process even faster and easier.  The first thing most spouses do when their sponsor gets a new assignment is send a message off to anyone they know in the new area and/or those who lived there before.  For those dealing with special needs, the search is on for the best services in the area, the best school district, etc.  Usually, this involves friends introducing families to others in similar situations in the area.

What if we could cut out the middle step, and provide parents a forum to share current information about the area?  This information could carry over to families moving there in the future.  What a difference that would make for these parents, and by extension, their children in need of services?  This is the aim of Hands & Voices: Military Family Support.  Our goal is not to take the place of local Hands and Voice Chapters, but rather to offer support specific to those living the military lifestyle with their D/HH children.

Jenny Swan and Chelsea Hull, moderators of Hands & Voices Military Family Support

Jenny Swan holds a MAEd in Elementary Education, which she is currently using to homeschool her 5 children (4 hearing and 1 HH).  She enjoys reading, hiking with her family and gallivanting around the country in her “tiny home” on wheels.  Life is an adventure and she’s so thankful for the opportunity to live it! 

Chelsea Hull currently operates her own business as a freelance interpreter.  She first learned American Sign Language (ASL) from her mother, who was hard of hearing/deaf.

She holds a Bachelor of Arts Degree in Deaf Education from Fresno State University and a Master of Arts Degree in Deaf Education from San Diego State University.  She has over 15 years experience providing classroom instruction, working with families of children with hearing loss and communication delays, and teaching developmental playgroups and baby sign language classes.

Chelsea specializes in teaching parents to utilize ASL signs and principles to improve their child’s speech, vocabulary and language usage, reduce problematic behaviors, and strengthen the parent/child bond.

Chelsea’s two children, both began signing at 6 months, and are now 4 and 2 years old.

 

 

 

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Janet DesGeorges: Embrace the Past, Change the Future

Janet in boston
I am the mom of a beautiful, smart, talented accomplished well educated Deaf/Hard of Hearing daughter named Sara.

Eighteen years ago, I sat in a meeting hall at an ASL Deaf retreat where the entertainment one night was a group of Deaf individuals who performed a satirical skit about the ineptitude of hearing parents of Deaf children.

I said in my heart, “I am hearing, but I am Sara’s mother.”

Twelve years ago, I sat in a medical conference surrounded by hundreds of physicians who were listening to a passionate lecture on genetics and deafness. At the conclusion of the presentation, the Researcher stated, “…and the eradication of deafness is at hand”, which received a standing ovation.

I said in my heart, “my deaf daughter will not be eradicated.”

Ten years ago, I sat in an educational conference surrounded by thousands of special education directors in the audience, and every time the presenter used the term ‘parent’ she put the word ‘angry’ in front of it.

I said in my heart, “that is not how it has to be.”

In my work at Hands & Voices, every day I am surrounded by parents of children who are Deaf/Hard of Hearing, where we share the journey of raising our children – who desperately need the support of D/HH individuals, medical professionals, and educators to help us ensure success.

But you must capture and know our hearts if you want to partner with us in this journey.

(I know what you are thinking right now… man, she sure goes to a lot of conferences…)

Of course those are not my only stories. My life experience is woven with a rich fabric of deaf individuals who have come along side me, have not judged me, have sometimes challenged me in a good way, and ultimately helped me to open the door to my heart to make decisions for my daughter based on her needs as a deaf child, and look beyond the filter of my life as a hearing person.

There have been audiologists and other professionals who have come along side our family and supported our choices and also made technology useful and functional in the real world for Sara, and given her the freedom to use her technology when and how she wanted to, and to be in control of that as she grew up.

There have been educators who have stood up and demanded educational excellence from my daughter, from her schools and not backed down when it came to her communication access, and also provided me with the tools to be effectively involved in her education.

The thousands of parents at Hands & Voices have their own stories that have framed their journey, and though I am the one up on the stage today, I carry their stories in my heart as well.
Regarding Deaf Education….

DEAF education/deaf EDUCATION

I met a deaf educator who left the field of deaf education to immerse herself in traditional and new models of education for all students and came out the other end telling me that we must never minimize either of the words when talking about DEAF EDUCATION. We must never dissect these two aspects apart from one another. Yes our kids are Deaf (and this includes kids who are hard of hearing) AND yes, our kids need an education. Let’s call it: Deaf Education.

Not just the what, but the how.

It’s not just about what we know or don’t know about Deaf Education. It’s not just about communication, language, literacy, and social/emotional development of Deaf children. We must now advocate for these things in a system and a world where it’s not often understood.

But when it works well, it can be brilliant.

Here is one tiny snippet of one tiny issue during one tiny piece of a 13 year old’s day at school. A mom went to the school and said that she had been arguing with her daughter about homework every night. Her daughter said she didn’t have any. Was this a communication access thing? Was it a teenage thing? Was it a school thing?

It got worked out…

Every day, the teacher in the classroom, when announcing homework assignments said it both verbally, making sure she was facing the student (who used an FM system and lipread), and also then turned and wrote it on the board to provide visual accommodation. The student could also turn and look at the sign language interpreter who was also there for her. The special education specialist in the school had arranged with the general education teachers that homework assignments would come to him and then also be posted for parents to have access to, so that they could check in with the student and help with any homework as necessary.

When all team members are pulling together, access happens!

The Power Seat of Advocacy

I’ll always remember the father who called and asked if I could come to the IEP for their son. I knew this Dad, he was a high powered attorney. He told me that he had never been into a meeting like IEP meetings where he felt so discounted in what he had to say.

Even if the law provides for parents to be at the table we must continue to create a future where true collaboration exists, and where meeting the needs of deaf child is not something to be negotiated by teams who all have different motivations for what the outcome might be (fiscal, methodological, lack of information) but be based on that child’s needs, as an individual who is unique. We must continue to create this in our educational system and to have hope that this can be accomplished.
Parent Advocacy

One day I was in the mountains of Colorado and the sun was setting in a beautiful grove of Aspen trees. My husband is a professional photographer so I barely ever take pictures, but I was alone, so decided I would take a picture of this beautiful scene. As I was standing there, I thought, “I think I’ll do a selfie with me in front of the trees.” I don’t do selfies very often, so I kept trying to figure out how to hold the camera, press the button, and get both myself and the trees in the photo, while still trying to capture the beautiful light in that moment. As I was juggling the camera, at the very last moment, I remembered my friend had told me that if you take a selfie looking down on yourself from above, you look thinner, so I held the camera up high, and then took the shot.
Here it is:

janet selfie

When I think about the power of parents, parent engagement, parent advocacy, parents whatever…ruling the world – I think of this photo.
If we as parents forget what the point of all this is…. In this case our children who are D/HH – it’s not about ourselves as parents – we will miss our goal. Beautiful, light filled successful children. We do not need to put ourselves in the middle of the picture. We want to stay clear on whose ultimate journey this is. But as Parents – we are the holders of the camera, we are the photographers in our children’s lives, we are the ones with the right and ultimate responsibility to frame the picture and ensure a good photograph. But we could use your help (educators, health professionals, Deaf and Hard of Hearing adults) in framing the photo and knowing how to use the camera.

I challenge you today

I challenge you. Whether you are a Deaf individual, a researcher, a teacher/educator, a medical professional – don’t forget that the point of all this is not about you, just like it’s not about me….it’s about our kids, each one individual and unique.

If you commit to doing that, so will I, and so will all parents who only at the end of the day want their kids to succeed. But if we stay separated as we have done over the centuries, I don’t know, truly if there is any hope.

I am not a Pollyanna, I know that we will not all agree in this room and/or across organizations and systems. Ghandi said, “Honest disagreement is often a good sign of progress” But we have no hope if we only focus on our own selves. I am so enheartened by movements right now in the field like the Common Ground project and the Radical Middle, and of course…Hands & Voices.
We must stand together…

I am learning that everyone has a story and is a human being behind their ‘role’ in this conversation. We often come together in rooms where we do not stop to listen and reflect on different perspectives in deaf education – and partly because we do not view one another as human beings with respect. I know that the history of deaf education over the past 200 years has been played out with passionate forces each clamoring for their stake in education of Deaf children. The stories I shared with you at the beginning of this presentation are my stories, and I know each one of you brings your own story to this conversation, and I thank you for it. I carry in my heart those who have come before us to make a path for my daughter today. – whether they communicated like my daughter does today or not. I am grateful for those in this world who are passionate and fight to keep the path for all our kids.

sara and Janet

I am a mom of a beautiful smart talented accomplished well educated Deaf/Hard of Hearing daughter named Sara. Does she speak or does she sign? Does she use both or not? Why does that matter? For my daughter or for any of our daughters or sons who are successful human beings in this world. Yes – we must all stand together to help our children attain success through one means or another, but the light on the trees must be successful outcomes for ALL kids, not the means by which we achieved it.

By Janet DesGeorges

(This speech was given by Janet DesGeorges, Executive Director of Hands & Voices at The Deaf and Hard of Hearing Program Presentation Thriving Together Friday, May 5, 2017 Boston Children’s Hospital.)

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Savannah: My Deaf Journey

aid photo

Hey!

My name is Savannah. I am a hard of hearing high schooler, and I use a cochlear implant and a hearing aid to help me in my everyday activities.

From birth, I was diagnosed with profound hearing loss in my left ear and moderate hearing loss in my right. I have always known that I was deaf, and this has been a fact of life for me.

My first memories of using technology were in pre-school. I wore an FM receiver in my right ear and the teacher would wear an FM transmitter. Now, this transmitter looked quite different than the transmitters commonly used today. It was a large box, clipped to their hip, with a thin cord running up their chest and a tiny microphone attached to their shirt collar.

My kindergarten teacher named it “Tina the Transmitter.”

I used my receiver, complete with a bright pink mold, all the time. My mother would tape it to my ear during karate practice, so I could punch, kick, and hear while feeling secure.

Then, in first grade, I got my first hearing aid. It had a giraffe pattern on it and I loved it. So much so that my mother fought tooth and nail for my audiologist to allow me to get one in my left ear.

Why was this an issue, you ask? Hearing aids amplify sound and sends the waves through your cochlea and to the auditory nerve. But my left ear, audiologists said, wouldn’t be able to pick up the amplified sound, and would therefore be a waste of time. Nevertheless, we persisted, and a few months later I had bilateral hearing aids.

Throughout my elementary years, my parents would sometimes ask me if I wanted a cochlear implant in my left ear. I would adamantly refuse – saying I didn’t want to be deaf but rather hard of hearing.

In seventh grade, my tune changed. Middle school brought new challenges and new experiences. I began debating the pros and cons of a cochlear implant. I still used my hearing aids as well as a newer version of an FM transmitter.

The summer before eighth grade, I got the surgery. It was such a rewarding experience. While I was definitely scared going into the operating room, that fear dissolved quickly. I knew that I had made the right decision.

Master ear

Being turned on was really interesting. There were all these new gadgets and computer programs that controlled my head! My hearing rapidly improved from initial beeps to normal sound. While aural therapy was boring, it was worth every second to be able to hear new and exciting sounds. I learned a lot about sound booths and frequencies in that year!

Finally, I reached high school, where I use Cochlear’s Mini Microphone as an alternative to the transmitter I had once needed. Today, I am able to hold conversations at lunch and collaborate with classmates using this technology.

Being deaf is an important identity to me. I have changed a lot since the days when I rejected the very idea of getting implanted. While I may not understand everything people say to me, I can hear much, much more than I ever realized I could.

An interesting thing about being deaf/hard of hearing and using technology is that you live on the border between the deaf and hearing worlds. I really enjoy explaining to hearing people about my ears and my needs, and hopefully educating more people about my community and myself. But being on the border of my two worlds mean that my “people,” so to speak, are a select group of individuals. While I do try hard to connect with my deaf identity (learning ASL and deaf culture), and I try and integrate into hearing culture everyday, I have come to realize that my world is the border.

Being deaf is challenging. I have to deal with projects involving music and with watching videos without subtitles and with bad audio. Yet being deaf is rewarding as well! I have the ability to share with people my stories and spread awareness for deaf/hard of hearing people.

mydeafjourney2

I even created an Instagram account, @mydeafjourney, that I use to share my everyday experiences with deaf and hearing people alike!

So, if I had the chance to stop being deaf, I wouldn’t take it.

Being deaf is who I am. And I don’t want to erase my identity.

<3 Savannah

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