Posts Tagged ‘deaf teens’

Savannah: My Deaf Journey

May 30, 2017

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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.

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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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David Cluff: Inspiring Deaf and Hard of Hearing Teens

October 5, 2016

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My name is David Cluff and I am deaf, and this is my story.

In March of 1993 I was born with a virus called Cytomegalovirus, which is known as CMV. This virus has many side effects and doctors thought I might not survive. I was born pre-mature and despite what doctors initially thought, I was born healthy. I was welcomed by loving parents and would eventually be the oldest of four children.

My childhood was not like most kids growing up. At age three I was diagnosed with hearing loss and fitted with my first set of hearing aids. At age six, I woke up one morning and any hearing I had the night before was completely gone. Just like that, something that I cherished so much was gone. My world had changed in a matter of moments. I felt broken, unsure, and I missed the way things used to be.

Shortly after losing all my hearing, I was given the option to receive a Cochlear Implant. After lots of prayers and help from family, friends and people I hardly knew, I got my first Cochlear Implant in October of 1999. Shortly after recovery, I got the Cochlear Implant turned on–and very quickly, my ability to hear my parents, my own footsteps and the water running was restored.

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Did that magically make everything perfect again?

Nope.

Rather, it was the beginning of a journey of faith as I re-learned to hear the world around me. It was like a matching game of “what sound goes with what.” As the years went by and after a major move to the great city of St. Louis, Missouri, I was given another opportunity to receive a second Cochlear Implant for my left ear. It was my dream to hear with two ears again. I was once again faced with the challenge of re-learning to hear. Hearing with two ears is not the same as hearing with one.

Back in 2007, I was working closely with my surgeon, Dr. Hullar, on a five-year research study. He became a good friend and a great mentor to me. During one of the meetings in his lab he overheard my parents and I brainstorming on what project I should do for my Eagle Scout rank in Boy Scouts (BSA). Dr. Hullar knew my background in computers and said, “Why not build a website for deaf teens like yourself?” It was like a huge light bulb went off and I found something to be passionate about. Before I could actually start the project I had to get it approved by the BSA board. I was nervous as I really wanted to do this project no matter what and being able to do it as my Eagle Scout Project would make it more meaningful. The board members approved the project.

The project began and I was no longer alone on the website as teens from around the world joined in to help me. Out of all the teens, I created a group of key team members to help manage the project. Team members included JoEllen from Tennessee, Lesley from Texas, Josh from Missouri and Lissa from the United Kingdom. All of them are deaf and use cochlear implants and/or other hearing devices. I could never have done it without their support.  We did not only build this website together but formed friendships. We also had community professionals volunteer their expertise in graphic design, web design and more! It was amazing!  In 2012, I decided to put everything on hold and serve a two-year church mission where I was able to meet and help so many people. Upon my return home in 2014, the servers for deafteens.org had failed and it was lost. As devastating as it was, it was a great learning experience for me.
After months of working on a website design, logo work, and building content, deafteens.org became LIVE once again in May 2016. It was a thrilling moment as I sat with my wife and we launched the website to the public once again. This project is one of my biggest passions. At one point I thought, “I am no longer a teenager, so maybe I need to put it on the shelf.” But, as we can see, it did not stay on the shelf for too long. It was always on my mind and I knew I needed to bring it back.
Because of Dr. Hullar’s mentorship, I developed a confidence that I can do anything. Deafteens.org has become a huge passion of mine as I want to help others, especially teens, gain support to reach their dreams.

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Today, I am happily married to my best friend and a father to an energetic 8-month-old boy. Even as an adult, I am still learning to hear the world around me and cherish every moment I can. I have come to realize that life isn’t supposed to be perfect; rather, it is like a puzzle. When you get a puzzle in a box or bag you now have the choice to either put the puzzle together or let it sit on the shelf. My challenges came like a bag of puzzle pieces. So many pieces that it often felt like it would take years to put each one together to match the master photo. Yet, I had a choice. Am I going to let it sit on the shelf and let my challenges hold me back or am I going to do my best to put the puzzle together? Once completed you see the whole picture; but notice how there are lines going all over the place from each puzzle piece. It is not seamless at all, but it is also not broken. That is like life. We are given pieces of a puzzle and with time, we come to see the masterpiece.

My master puzzle is still in the works and I am seeing parts of it coming together–and that is when I know that everything is all right and that everything will work out.

Read more about David’s story, visit: www.davidbcluff.com

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Blog Spotlight: Hear Cloe

January 15, 2014

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Hear Cloe, is a blog written by the daughter of Marjorie Madsen Keilers, Director of our New Mexico  chapter of Hands & Voices. In one of her recent blog posts, Cloe talks about:

My First Language is Garbled

I think that was the first time it really struck me that my speech and writing were impacted by my hearing loss.  This situation was not the first time someone asked me if I spoke another language.  One time someone asked me what kind of accent I had.  The truth, I realized later, was that I had a deaf accent.
Upon further reflection, I discovered what was truly my first language.  It happened during a start of school meeting with new teachers.  I was asked to explain to the teachers what I heard and a the definition of a new language clicked into my head and I said “My first language is Garbled.”  For a lot of teachers, that explained everything.  I can hear, but I am not always hearing sounds that make up coherent words, even with the use of my hearing aids and FM microphone system.  Most likely it is garbled that no one understands; sometimes even I don’t understand it.

 

Cloe also shared some tips on the importance of Self Advocacy which she summarized from Rachel Kolb’s TEDx talk:

  1.  “Find the strategies that work for you.”  This could mean anything from sitting
in a certain spot in class or signing versus speaking.  It does not matter what kind of
strategies they are or if it is the same as anyone else’s; everyone is different.

2.  “Find people who support you.” Friends and family are people who fall into
this category.  Teachers and classmates should also fall into this category (although in
that case, they would also be your friends, no matter how much homework teachers
gives you).  However, some teachers and classmates don’t always support you.  If they
don’t give you the slightest support, then do your best to avoid them.  They are not the
people you want to be counting on.

3.  “Invest in yourself.”  This could mean getting hearing aids, or a sign language
interpreter, and whatever other tools you need.

4.  “Learn how to express what you need.”  This would mean asking for what you
need.  You could ask for something as simple as a set of notes for a class, or speech
therapy, or (I find that this is the hardest) asking people to face you when speaking.

5.  “Say [or in whatever communication mode that works for you] something:”
This is a reiteration of her fourth thought, but it is important, which is why she repeated it.  You have to speak up in order to advocate for yourself.  You cannot remain
silent.

And we especially like this one:

One last note to make on self-advocacy.  Be patient with your AWESOME Mom, or Dad or guardian as you develop your self-advocacy skills.  They have been advocating for you since you were a baby (since it is kind of hard for a baby to say anything in it defense except look cute).  Sometimes it’s hard for them to accept you are growing up!  And be sure to thank everyone who supported you!

 

You can read Cloe’s blog here:  Hear Cloe

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