Kris Martin: A Passion for Racing

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Not Afraid (Excerpt from Kris Martin’s website)

Ask Kris Martin to do something for you and his standard response is “Not a problem.”
Stepping in a race car that reaches speeds of over 200 miles per hour. Not a problem. Speaking to over 300 hundred students who look at him as a role model. Not a problem.

Being born profoundly deaf. Not a problem.

In fact, being born deaf may have helped Kris. He learned to race by primarily using his tactile senses, and has given him a great ability to feel the track and use his instincts. Today Kris is actually able to receive partial hearing through the use of a implant he had surgically implanted when he was eight. A company Phonak Hearing Systems created an audio device that uses radio frequency which allows Kris to communicate with his spotters.

Kris certainly has the talent to race and he comes with racing in his blood. Warren Coniam(Uncle) and Doug Syer(Grandfather) are both in the Canadian Racing Hall of Fame. Kris also is strong proponent of giving back to those who are deaf and hard of hearing. A role model for many, Kris speaks to children and charities across North America. His speeches give hope to not only children, but to parents, too–that their children can defy any odds that may be placed against them.

Ask Kris if he is ready. He will tell you…not a problem.

From Kris:

Racing Family

I come from a racing family.
kris martin 1
My grandfather is my hero in my world. He is that one started our racing family history since he was 18 yr old. He had seven kids!

When I was little watching my family race, I knew that I all I wanted to do was race. It was my dream!
There were a lot of expectations because of my family’s success in racing, but I took it as a challenge to follow in their footsteps and make them proud. NOT A PROBLEM…..

kris martin go kart

Go- Karting

I loved Go Karting and I was lucky to have success and travel across North America.

I had a lot of fun racing and meeting friends at the track. It gave me a lot of confidence in life and in school to know I can be successful.

I had to learn how to drive the kart by feel. I got the feel of the car in my hands, my legs and my butt. I can feel if there is anything wrong with the car immediately. I do not need to hear anything go wrong.

One Thing I’m Proud of: 6X Time Karting Championship!

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Race Car

My dream has always been to race Stock Car!

I had other drivers tell track officials they were concerned to race against me because they were worried I could not hear and could not drive–and would wreck them. After seeing me on the track they quickly realized I am a driver and could handle the track.

I am able to race because of special hearing system from Phonak that allows me to communicate with my spotter and crew chief.

I raced in the Nascar Arca at Daytona International Super Speedway, LeMan 24HR Series road racing.

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Public Speaking

I decided to get involved with public speaking at the age of thirteen. I became involved with VOICE and CHHA organizations, and I was able to talk to children and adults that had to face challenges just like I did. I like to show them that they can overcome anything as long as they are passionate, work hard and believe in themselves. I have spoken all over the world to thousands of people. I take it very seriously to show everyone my passion that you can achieve your dreams with whatever challenge you face. NOT A PROBLEM…..

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Believe Yourself

I followed my dreams and I was able to achieve my dream of being a race car driver.

Everyone has their own set of challenges in their lives. I am proof that if you are passionate about what you do, then there is nothing that you can stop you. Have confidence and believe in yourself. Don’t let being deaf/hard of hearing stop you from living your dreams. NOT A PROBLEM…..

 
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The Cornerstone of Parent Choice

Most recently, we have been asked to clarify our position on parent choice. Supporting parents in making their own informed choices for the child they know best is central to everything we do.
 
The Cornerstone of Parent Choice
By Karen Putz,
Co-Director of Deaf/Hard of Hearing Infusion
Hands & Voices
 
In my very first job right out of college, I informally took on the role of being a mentor to a family with a toddler who was deaf. I had no formal training, other than my own experience of growing up hard of hearing, becoming deaf as a teen, and learning American Sign Language shortly after. That first experience of working with families was so enjoyable for both the family and for me that I began to get calls from more and more families. I happily provided mentoring support, even though my primary job was structured toward independent living for teens and adults.
 
Then I got a call that would change my life and eventually lead me formally down the path of parent support…
 
A mom called to ask for support services and resources. She had just found out her six-month old daughter was deaf. I debated whether to take the appointment, for I had just turned in my resignation letter to stay home with my own newborn baby. Since the family lived near my home, I took the appointment.
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I ended up mentoring that family on my own out of sheer passion for the work. We held sign classes in her home and the neighbors joined in. We mentored other families together. In an ironic twist, this mom was also there to support me when my toddler became profoundly deaf two years later. It was that moment that my journey became personal–now I was the mom of a deaf kid. Everything shifted in the way I provided support from that point on, because I was now walking down the parenting path with my own experiences. My husband and I were now facing the process of choices and decisions we had to make for our child (and the two that followed).
 
And that changed everything.
 
As a parent, we are responsible for all kinds of decisions for our children. My husband and I soon learned that NOT making a decision was a decision in itself–and we had to own the consequences of that path as well.
 
In 2004, I stumbled upon Hands & Voices while putting together a website for parents in Illinois. The minute I read the description of the organization, I knew it was a fit for our family.
 
Who are we? We are parents of ASL signers, cued speech users…. parents of kids with cochlear implants or total communicators… we are people who have common interests connected through the community of deafness. Hands & Voices is a safe place to explore options, get unemotional support (although we can be emotional about it!), learn from one another and share what we have in common. We value diversity and honor the role of parents and family as the single greatest factor in raising a WASK (our favorite acronym: Well-Adjusted Successful Kid).
 
“There is room in the community of deafness for an organization like Hands & Voices, and in fact, I think parents, and even many professionals, have been crying out for a group like this,” says Leeanne Seaver, Board member. “Somehow parents connecting to other parents provides an element of credibility; there’s a level of ‘knowing & feeling’ that only a parent experiences. And parents, especially parents of babies newly identified with deafness or hearing loss, need a way to connect like this without being wary of a sponsoring agenda from a service provider.”
 
Hands & Voices is a nonprofit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. We are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support.
 
Everything about the organization matched what I felt was most needed. Parent choice. Support for diverse communication options. Coming together for common causes. Support by parents for parents on the parenting journey.
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It is now many years later; my kids are now young adults. I’ve been a board member, a founder of a state Hands & Voices chapter (along with the parent I previously mentored), and I am now working as staff. Through the years, we’ve remained steadfast in our mission and vision to provide support to parents on the journey. We work with a diverse group of parents from all walks of life and all different stages of their journey.
 
From time to time, we are asked for our position on a variety of topics. Most recently, we have been asked to clarify our position on parent choice. Supporting parents in making their own informed choices for the child they know best is central to everything we do. When it comes to the parent’s right to choose, we stand firmly behind this concept:
 
Parents not only have the right to choose language and communication modality for their child who is deaf or hard of hearing, they have the ethical, legal and moral obligation to do so. Furthermore, the research proves that the single greatest indicator of a DHH child’s eventual success—regardless of which mode or method of communication is used—is the meaningful involvement of his or her parents. The goal is to make that involvement authentic, effective and informed by the wisdom that so many have to share from direct experience…parent-to-parent, deaf or hard of hearing adult to parent, and professional to parent.
 
putz kids
The parenting journey is filled with twists and turns. As a mom of three kids, I’ve experienced this firsthand. As a Deaf Mentor in early intervention, I’ve had the honor of being a part of a family’s journey often from the beginning. As a staff person with Hands & Voices, I’ve had the opportunity to work with a variety of families negotiating this journey around the world. I’ve seen it time and time again–even in the midst of difficult situations and trying times–there’s so much more that unites us than divides us. We must continue to focus on the common goal: building an informed community surrounding parents so they can nurture the seed of potential in every child.
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Rana Ottallah: Finding My Way Home

I have attended two Hands & Voices Leadership conferences and my first Early Hearing Detection and Intervention (EHDI) conference. There is no place on earth that felt like home than those three conferences.

Being a parent of Deaf/Hard of hearing child, with strong beliefs and convictions–is a lonely place. Single motherhood is a lonely place, strong advocacy for Deaf and Hard of hearing children is a lonely place, being a female community leader is a lonely place. All of these roles come with lots of emotional pressures, and the pressure to look strong and capable all the time. Educated , informed, calm, collected , on top of your game, and prepared for any and all changes of plans–at each and every setting.

The weight of responsibilities on my shoulders gets heavier and heavier by the day–I feel emotionally and physically drained. I feel lonely,and on my own. Nobody gets it or understands it.

Moms of Hands and Voices

The first time I attended a Hands & Voices Leadership conference, I met other parents and listened to their stories, I felt complete, whole and at Home. I wasn’t alone anymore. I felt the warmth of home surrounded by mothers like me, experiencing the same emotions and feeling similar pressure

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Things came into prospective and the vision became much clearer when I listened to other mothers tell their stories, share milestones, and share emotional highs and lows.

I realized that it is okay to feel down, overwhelmed, frustrated, but it’s not okay to feel alone when I am a member of the Hands & Voices home. There are hundreds of Hands & Voices mothers and leaders out there who get it, understand it, and are available to pull me up when I am down, wipe my  tears when I cry, and cheer me up when I feel helpless and frustrated.

I no longer feel alone, I found my way home.

parents of hands and voices

A home filled with Hands & Voices warmth, support, and unconditional love and understanding of parents and family struggles.

I am emotionally charged and ready for whatever comes my way. I am headed to my smaller home a better mom, stronger advocate, and more capable community leader with so much to give and so much to share.

Thank you Hands & Voices for bringing me home.

 

Rana Ottallah

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Jordan Livingston: Becoming a Pilot

jordan livingston pilot

Jordan Livingston has a dream: he wants to become a commercial pilot, aviation safety officer, and a flight instructor. And he’s well on his way!

Jordan was born deaf and from a very young age, he dreamed of flying. Both of his parents worked in the aviation industry so Jordan grew up around planes. He obtained his pilot’s license in high school and interned at Southwest Airlines. He’s currently on a quest to complete his education and obtain the aviation hours necessary to certify him to fly commercially.

jordan livingston southwest

Take a moment to watch this Hands & Voices interview with Jordan and learn how he’s blazing through the barriers to become a commercial pilot:

 

An article on Jordan: Deafness Doesn’t Ground Aspiring Pilot 

Jordan’s experience at Southwest Airlines:  Southwest Intern is Defying the Odds to Become a Pilot 

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Clare Patterson: There is Beauty in Everything

clare patterson HV story

It is strange how the human brain doesn’t notice slow disappearances over time. Sure, our brains are well attuned to rapidly changing conditions but woefully inept at noticing small changes.

My life so far has been a string of “un/lucky coincidences”.

This is why I wasn’t diagnosed with hearing loss until I was 18 and a first year student at a selective liberal arts college.

Rewinding a bit, when I was born in 1986 there was no newborn hearing screening. My parents thought I was “advanced” because by 6-8 months I would mimic adult conversations except I didn’t make any sounds.

School came around and I was lucky that my neighborhood school had Deaf and HOH integrated mainstream program. I began learning ASL when I started kindergarten.

I needed years of speech therapy, yet my hearing wasn’t tested. I remember emerging from the city mandated eye testing in tears because I failed so horribly that the lady administering the test tapped me on the shoulder and told me I was “supposed to be looking for the numbers”. What numbers? And how telling was it that she had to tap me on my shoulder to get my attention?

The first hearing test I remember having was in 5th grade. Until then I had excelled in all my classes and had been in special education for both speech therapy and gifted classes. All my classes except the very small gifted class had interpreters. I really don’t remember how much I relied on them but it was enough that when I transferred to a private school for 6th grade, I noticed a distinct change in my social life.

The middle school social milieux absolutely revolves abound inside jokes and I was lost. The disparity between my public school and private school was so pronounced that I and the other two “scholarship girls” in my grade had tutors for between a year and 4 years each. I had a formal tutor for one year.

Eventually, and with the help of amazing teachers, I became a great student at one of the best college prep schools in the South. I started winning awards for Latin (I refused to take a spoken language because I’ve always had trouble pronouncing words), art, writing BUT I was alone in my own world. I ate lunch alone daily, often venturing outside even in the cold so that I wouldn’t be so conspicuously out of place.

Class size was so small that I could keep up in class but where the real action of an all girl’s high school happens in whispered jokes and quips.

I missed all of those and looking back, despite our school being located in an Episcopalian church, when I was on those awful training runs for soccer or lacrosse, or walking to my friend’s house a few blocks away, the ringing of the bells on the half hour and hour just disappeared. One time when walking with my friend Connor to her house barely a mile away, she mentioned that it was “3:30”. “How the heck do you know that? You refuse to wear a watch!” I implored, incredulous that she thought she could tell time without a watch. She slowed down her walk and said “the church bells just rang!”. “Oh, yeah. They did”, I replied sheepishly but my stomach was in knots realizing that just a block or two from school, I couldn’t hear the bells, the ringing of the bells.

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Like all things good and bad, high school ended. I had received a full scholarship to my number one college choice far, far away from my home.

I moved, with many unexpected tears, to a small liberal arts college quite literally in the middle of a cornfield in rural Iowa. Within my first month I had gone to the nearest “city” (more like a town with a K-mart AND a Walmart) and was diagnosed with mostly flat sensorineural hearing loss that was moderate. Hearing aids were ordered, during fall break I came back home and saw a big city ENT doc who repeated the hearing test and did a CT scan looking for any other explanation for my aberrant test results but, the results were accurate, the new ones were even a bit worse. I had moderate SNHL (sensorineural hearing loss). My parents started piecing together anecdotes from my past. My mishearing of song lyrics, the utter lack of skill needed to sneak up on me, my seeming inability to be social at large family events.

When I returned to school my three best friends borrowed a car to drive me to the audiologist nearly an hour away for my brand new BTE (behind the ear) hearing aids to be fit. They took advantage of the shopping in a town twice the size of our college town while I discovered that paper rustling is an annoying sound and why people were always annoyed when I clicked pens. I was absolutely aghast that paper made noise and pens clicking was actually annoying.

That was all in the first semester of college so for most people I knew, me having hearing loss was normal. My college purchased an FM system for me, back when the advanced FM systems consisted of two boxes, and I did the awkward “drop off the prof’s box and mic before class and hope they notice it”.

By my second year in college my friends began noticing that I wasn’t hearing as well as usual and that my speech had become “blurry”.

I got a ride with a friend to the big town and found that my hearing loss had dropped to “severe”. My hearing aids were turned up and I could hear most things again. Life, as it always does, went on.

The next year I just borrowed a friend’s car and drove through the aftermath of a midwestern blizzard with snow piled higher than my lanky (at the time) 5’8.5″ on either side of the back roads I had to take. I didn’t take a friend this time, I knew that I had woken up one day almost completely deaf. Some of it seemed to come back but it was tenuous. I came back with my hearing aids maxed out, I turned on my borrowed car not realizing how loud I had the music for the ride up and that there was music playing in the borrowed car. Driving back I was disoriented, not by new sounds as I had been a few years earlier, but by how distorted things sounded. I spent the rest of my spring break at work fixing computers, or in bed. I watched as the snow blocked off the walkways from my dorm to where I worked across campus. The snow lasted longer than usual and piled up to two feet on my small prairie campus.

I could only scoff when people spoke about “hearing the snow fall”. What other BS did hearing people make up?”

I finished college and went on to work in infectious disease research while my hearing slowly dwindled. I still loved music but I only listened to bass heavy music. It was my ritual to remove my hearing aids at the end of the day, turn on Jimmy Cliff and turned up the volume until the bass thumped in my chest like a second heart beat.

clare patterson hv story 3

I then went to graduate school and in the January before my April thesis defense date I received a cochlear implant in my right ear. I was activated on Valentines Day 2014 and was overwhelmed by sounds I had never heard before. My audiologist was pretty certain that I had never had normal hearing. I went back to my apartment and put on a DVD of my favorite TV show just to have some sound other than roaring tinnitus. I went to work on the final draft of my thesis (“The Utility of Autologous Stem Cell Transplant in Newly Diagnosed Type 1 Diabetes: Reversing Autoimmunity and preserving Beta Cell Function”). While doing statistics I suddenly laughed. I looked up and saw the TV with captions, as always, on. I then paused the DVD and went back and replayed the previous scene. I couldn’t tell the difference between voices or really what words they were saying but somehow I heard the joke while reading the captions and laughed again. I understood speech after nearly 10 years of profound deafness. It was awkward, helium sounding speech but I heard it! I decided to have speech I was familiar with in the background for all the hours I was awake. Soon, I could tell the difference between male and female voices and then between different female and male voices. I defended my thesis, after much practice with my advisor on how to say “statistically significant” and was able to hear the questions from my professors well enough to, with a bit of guess work, correctly answer their questions. I also presented my research at the annual “Research Day” and even in a large open space with abysmal acoustics, I was able to answer questions about my poster. It was by no means easy but I did it.

Now I’m in the midst of applying to medical school. I’ve worked in a busy urban ER for the past few years and I’ve fallen in love with Medicine. I wrote the piece below two years ago. I think it illustrates the joy of new sounds:

You know that thing people do when a lightbulb goes out? The unceremonious unscrewing of the bulb and the shaking of it next to an ear?

I honestly never knew why people did that, I remember doing it as a kid, hearing nothing and replacing the bulb with a new one.

But just now, a light bulb went out in that spectacular millisecond of a brilliant bursting flash.

I reacted as always, unscrewed the bulb and held it to my ear and shook it. Nothing, normal, you shake the bulb, I don’t know why, maybe to make sure it is dead? Who knows? People do weird things.

Then I tried my right ear, the one with a cochlear implant.

I must have looked like a maniacal child just standing there shaking a bulb and laughing.

It makes a sound. You guys, it makes a SOUND! A beautiful sound. A sound of distant church bells ringing out (The ringing of the bells. The bells, the bells.)

It’s a tinny sound, an echoey sound. You can hear the little tungsten coils bouncing around, you can hear when they settle at the neck of the bulb and that sound is different from the sound they make leaping off the sides of the rotund side.

Did you know that makes a beautiful sound? It does.

I’m still smiling. I heard something that I don’t think I’ve ever heard in my life and it was beautiful. It was mundane and everyday and boring to most, but it sounded so beautiful to me.

There is beauty in everything. Sometimes you just see it for the first time and sometimes you need to be surrounded by darkness to see light of a burned out bulb.”

I’m still D/deaf. A cochlear implant is a tool and an imperfectly perfect tool. I still sign when I want and occasionally use an interpreter but I can hear things I’ve never heard before.

 

Clare Patterson

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Joshua Ledbetter: Deaf Entrepreneur Encourages Everyone to Live Every Day Better

My name’s Joshua and I was born deaf with 100% hearing loss in both ears. I did not expect to have the life I am living today and I am grateful for the lessons I learned throughout my journey for the past 30 years. You may know that I started @ledbetter_inc, or a successful online entrepreneur that brings more than six figures annually through different businesses, getting featured through newspapers and online magazines, or husband of Julie.

Being deaf at first, I felt that I was robbed. I was unable to keep up with friends. I was unable to pick up a phone to hold a conversation with people. I couldn’t work with a group on project unless I had a sign language interpreter. I couldn’t hear or listen to music like many people did. I was at an unfair advantage. I didn’t really share how I got to where I am today without sharing a lot of dark secrets about my past. All you see on my social media platform, are just the tip of my iceberg aka highlight reels. It is time for you to look under the water, and see how I decided not to give up that it led to who I am today.

When my mom, Kelly moved to Germany it was to support my biological father, Joel with his career in the military. Although she had been married seven years, she had never become pregnant. Then in the fall of 1985, she became pregnant with me. As the pregnancy progressed, my mom had this feeling that she needed to learn sign language. At that time there was nothing to show that her pregnancy was anything but normal. So, she self-taught herself some basic signs and to sign happy birthday with the help of books.

In July of 1986, my father was transferred back to Colorado Springs to Fort Carson. I was born in October. As soon as I was delivered by the doctor, he told my mother she had a very healthy baby boy and that he had all his fingers and toes. My mother then said that they needed to check my ears because she knew I could not hear. Everyone laughed it off to her being exhausted. In 1986 they did not do newborn hearing screenings on babies to see if there was any hearing loss.

As time passed, it became more evident to my mother that I could not hear. I did not startle or wake up when she vacuumed, nor did I talk. Yes, I babbled, but not like a hearing child. When I turned one and went for my yearly checkup, my mother told the doctor that I could not hear. He said he did not believe that and to bring me back in six months. My mother immediately went home and called an ear, nose and throat physician to get my hearing tested.

I took the hearing test with the light up bears and I promptly passed that. I seemed to be aware of which bear would light up. She did not believe the test so the doctor ordered an ABR. She sat in a darkened booth while they hooked me up to electrodes to measure my hearing. Even though she knew I could not hear, it was still devastating to her when the technologist came in and said, “yes, you are right, he cannot hear.” And she left my mom there to deal with the news.

My grandmother was there and they both just stood there and said, “What do we do now?” My mom had no idea what was next. She called the doctor and he provided her with some names and she went to work to find out about hearing aids, classes, etc. She got me and her into an infant stimulation class at the deaf and blind school. It was great for her to be with other mothers who had deaf/hard of hearing children and I was only 13 months old. We really had a great support system with my grandma and my aunt. Mom and Aunt Tracy took sign language classes and mom went to class with me every week. She cried the first time I signed my first word which was “more.”

I didn’t like my hearing aids at all and it took me a long time to get used to them. As I moved along in the class, it was evident to others that I was pretty intelligent. My dad and mom met with a Deaf Education teacher at Jefferson Elementary who wanted me out of the deaf and blind school to be mainstreamed. Denise Davis Pedrie was a lifeline to my mother and such a lifelong teacher to me. My mom worked with me every day with auditory training, signing, and speech. She never gave up and knew that I was going to succeed at it all.

In terms of getting a cochlear implant, my mother never made that decision for me. She felt it was not her place to tell me to be hearing and as I grew, we talked often about it but I felt that I am who I am. My mother never wanted me to be someone that she thought I might want to be so she left the decision to me as I became older. Although I was close one time at the age of 17, close enough to make the surgical appointment, I decided that I could not be what the hearing world wanted me to be.

I did not recognize my deafness until I was about six years old when I began to experience my struggles with communication. I remember it very well because we used to communicate through gestures. Unfortunately, the use of gestures has continued to decline as hearing students grew older because they didn’t see the need to use gestures and/or sign language. The survival mechanism began to kick inside me, and I asked my speech therapist to teach me lip-reading more because I wanted to hang out and play sports with other students. Keep in mind, I had an amazing circle of friends who were deaf and hard of hearing, too so I didn’t feel completely left out.

When I was in elementary, middle, and high school… I was bullied and discriminated many times. To be specific with one of my first events, I remembered the first time I was called dumb and mute. I didn’t understand why I was being called that name. I came home to ask my parents about it. My mom taught me the first lesson that each child needed to hear: do not listen to others but yourself, you must believe in yourself to get where you want to be in life.
With my family behind me 100%, I was encouraged to work hard and learned not to give up. The life I experienced through school, motocross racing and life, in general, was like a roller coaster ride.

In May of 2011, I graduated with my bachelor’s degree in Sports and Exercise Science. When I was let go by my boss after completing my internship, I moved back home with my parents and began to look for my job. That summer, I applied to over 70 jobs. Every job opportunity I applied to, I never heard back from them. Every interview I attended, I didn’t get an equal opportunity to share my experience and/or expertise because the employers either didn’t provide an interpreter for me or that they didn’t know how to treat me.

That gave me a huge disadvantage against other job prospects which was extremely frustrating. After my 70th job interview, I remember driving home to my parents’ house with anger and asking myself questions (such as “Why am I wasting my time?”; “Why me?”, and “Why am I allowing others dictate what I can and cannot do?”). In that moment, a light bulb turned on inside my head, and began to wonder what it would take for me to create a company on my own? To create a movement to show the world that my disability has nothing to do with my ability to succeed?

That fall of 2012, in my parents’ basement, I began to research and learned how to start a company. I was scared but my drive to succeed was stronger than the fear I had. Shortly after, I derived Ledbetter from my last name and created the acronym: Live Every Day Better. For the last year, I have helped over 10,000 individuals reach goals through their body, mind, and soul in the most sustainable way possible!

Fast forward today, I own several online businesses doing what I love by teaching others to live every day better through body, mind, and soul with my hearing wife, Julie Ledbetter.

joshua and julie

Believing in myself is the best gift that I had given to myself because it pulls me through the hard times: a decision that cost me my professional motocross racing career at age of 15, unable to find a dream job related to my field for more than two years, unable to secure a job interview because I couldn’t pick up a phone call, getting email rejections from multiple bosses because I was not qualified, went through multiple depressions and suicide attempts. I felt like I was torn apart in multiple directions and that I wasn’t meant to be here today. I felt that I couldn’t make it but each time I went through that, I remembered that I needed to stay still and believe in myself.

Now, looking back five years today… I have a beautiful wife, a furry kid (dog), amazing friendships, incredible families, great customers that I love, a house that we just purchased, a car to drive, money in our savings, and being able to help individuals grow and change their lives for the better. All of things that has happened to me today is because I believed in myself (including my faith in God). It doesn’t matter if you have a disability or not, I didn’t need my ears to thrive through the business world. I used technology to help get where I am today.

If you are in a hard spot right now, remember to believe in yourself and that you’ll get through it. Your journey is what brings you the lessons you need to learn before you’ll succeed at whatever you set for in your life. It goes the same for everyone else.

#thedeafmentor #ledbetter #believeinyourself


Lewis Howes features the Ledbetters: https://www.facebook.com/lewishowes/videos/1545040185551829/

Joshua D. Ledbetter

 
Visionary Leader – Ledbetter, Inc.
joshua ledbetter karen putz
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Ellie Parfitt: How I Became Known as the Deafie Blogger

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My name is Ellie Parfitt and I’m known as The Deafie Blogger.

I was born with a bilateral profound sensori-neural hearing loss, into a hearing family who had no experience of deafness. It wasn’t until I was 9 months old that I was diagnosed, and I received my first hearing aids at 10 months.

My family decided to try and teach me to speak, rather than sign language because they had no knowledge of deafness or family members who were deaf. They didn’t receive much advice on communication choices. My Mum was struggling with the diagnosis, even to the point of not accepting it, so speech to her was the only choice at the time. Nowadays, there appears to be a lot more information, so hopefully a family can make an informed choice, what is best for the child and the family.

It was only years of constant repetition, support from my Teacher of the Deaf and Speech Therapy sessions that I’ve managed to get my speech to where I am today.

I attended mainstream Primary and Secondary School. I was the only deaf girl at school, which meant engaging with my hearing peers was difficult. I was a fun, sociable person and was always up for making new friends. However, being among hearing teens meant that society was quite judgmental. There were times that I came home from school upset, because my friends left me out of group conversations. My amazing Mum kept telling me that they’re not worth it, and to focus on school work and they might not be the right friends for me.

Although I had a Learning Support Assistant/Notetaker at school, all the time after school and at weekends were spent catching up on school work and going over things I didn’t understand. Eventually, all the hard work and determination pulled off and I am so proud of the grades I achieved, including top grades in German and Media Studies.

Looking back, I’d love to tell my teenage self that all that work has paid off and those so-called ‘friends’ weren’t worthy of my time or friendship. Now, I have jobs that I love and true friends who actually care about me and are accepting of my deafness.

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In 2015, I became quite frustrated of life with a hearing loss, the challenges and obstacles that I kept facing. I was looking for other deaf role models to see if I could read anything to help me, but I couldn’t find that person. I also desired somewhere to express my thoughts, so my boyfriend suggested writing a blog.

That’s when ‘Deafie Blogger’ was born. I write about my life as a deaf person, different experiences and challenges that occur, and how I overcome obstacles. I noticed that people were commenting on my blogs of how they could relate to my experiences and that they were glad they weren’t the only one. This motivated me to keep on writing and inspiring deaf people.

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I got invited to deaf events and presentations, and I realised that some deaf people were signing to me, but I didn’t understand what they were saying! I was then intrigued about the language and I joined a class to start learning British Sign Language. Even the little signs I know, I’m able to have a small conversation with some people which is quite rewarding.

As well as working in Marketing and blogging in my spare time, I love campaigning for deaf rights and raising deaf awareness everywhere I go.

Living with a hearing loss can be challenging at times, but it’s important not to let it stand in the way of achieving your goals. My motto is: ‘Deaf people can achieve anything they dream of, given the right support!’

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You can read my blogs here: www.deafieblogger.com

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On Death and Dying–And Deaf and Hard of Hearing Kids

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When my father was diagnosed with prostate cancer, I didn’t give it much thought. The prognosis was very good and the treatment was quick. My three deaf and hard of hearing kids were pretty young at that point and I actually waited to share the news until their grandpa was well into treatment. There were a few questions which I answered and life went on.

The second time around, my dad was diagnosed with Stage II Esophageal cancer. This time, the kids were teens. So from day one, they were involved and informed. We were optimistic that the cancer could be contained. My dad, a former Marine and World War II vet, approached chemotherapy like a war and hunkered down for the fight. The following year, a PET scan and blood work came back with good news: the cancer was in remission.

It didn’t last long.

When we arrived at the point when the doctor gently suggested hospice care, my siblings and I were all still deep into denial. Even after the hospice care nurse left, we figured hospice was something “down the road much later.”

Denial isn’t just a river in Egypt. It’s a coping mechanism that kicks in when you’re not ready to face what’s happening in front of you.

So we kept paddling down that river. Of course, I didn’t tell my kids what we were facing, because I was deep into denial myself. My dad was in a wheelchair at this point and we had a hospital bed set up in the family room.

The kids started asking questions to which I had no answers for.

Is he dying?

Will he get better?

How long will it take for him to be able to walk again? 

When my brother and I took my dad to the doctor, reality finally hit. I cornered the doctor in his office and asked him how much time we had left.

“I don’t think it’s days or weeks, but maybe…months.”

Yes, reality hit.

The only way to tell the kids was to gently but clearly tell them the news. I don’t even remember how or what I said, I just remember the sad looks on their faces as the reality hit them too. They had never experienced the death of anyone close to them and this was all new.

As painful as it was to see my own kids grieve and cry, I stopped trying to be the “strong one” and just broke down too.  Expressing what you feel is an important part of loss. Our greatest danger with handling the emotional pain comes from stuffing it inside and pushing it away. Deaf and hard of hearing kids–any kids–need to see what we feel. The healthy thing to do is to feel every aspect of it–let it out, let it flow. Go into the pain, instead of away from it. When kids see their parents handling life from a place of raw emotion with recovery, they too, learn that it’s okay to feel, to express, to reflect.

One of the most helpful things for my kids to get through the loss of Grandpa was to reflect on their best and funniest moments with him. We sat and shared stories. We also talked about the dark times as well. Anything and everything was on the table to be asked. Of course, depending on the ages of your kid/s, you’ll need to adjust your language in a way they can understand and process.

Keep it simple.

Keep it truthful.

Death and dying tends to be a subject we want to dance around. Instead, be upfront with your kids–see it as part of the celebrating of life, the imprint of one soul on this earth.

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Karen Putz is the Co-Director of Deaf and Hard of Hearing Infusion at Hands & Voices. karen@handsandvoices.org 

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Julia Resciniti: Surfing in Silence

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As I stepped out of the car, my feet felt the sand. It seemed to express a revolt from my sandals as it gathered on my feet and wriggled underneath them. The sensation was so foreign compared to the sand-less climate of Pittsburgh that I had grown up in. The sand had demonstrated an abnormal desire to worm its way onto every floor, into every crevasse, onto all articles of clothing, and to my own personal annoyance, into the heart of every lock of hair. But in my youthful nature, I was heedless of the ubiquitous sand that my feet sank into at every excited prance, slowing me until it seemed that I was in a nightmare where the ocean waited just out of reach because I was simply running in place.

Despite the baleful sand, I flopped down on a pastel pink board that was laid on the ground by people in wetsuits. They orbited the board methodically, stopping to congregate around my parents, the perfect contrast to how I had sprinted through the same area.

I sat up, not to observe the conversation my parents were holding, I little cared for that. I looked at the other boards that I had neglected. Mine was by far one of the thinnest. Broad boards laid scattered around, interspersed with pink boards like the one I currently occupied. I embraced my pink board, glad for the skinny width and for the color that, being a little girl, occupied its place in my heart as my favorite. My cheek flat against the board, my hearing aid boring into my head as I wedged it between the surface of the board and myself, I watched with a mild interest as my parents conversed with the people in the wet suits. I raised my head lazily as my mom broke away from the group and neared me, seemingly unperturbed by the pernicious sand.

She recounted the conversation as I listened with the same mild interest I had exhibited before. Then, she produced a pamphlet that had been given to her during the conversation.  It showed a diagram of a person swimming in the ocean, as I was about ready to be, with arrows in assorted colors, all pointing to illustrate a different current, stroke, or something else I little cared for. My mom explained that the diagram elucidated what to do should I become caught in a rip tide. She asked if I understood. I understood what to do, so I answered with a simple yes. I understood that I should swim parallel to the current, that I should wait out the current, but the sweet innocence I possessed at the time didn’t understand the idea of a riptide. I understood that it was deadly, but I didn’t believe it, not really. I didn’t distrust the advice. I just didn’t attach any weight to it.

The only thing that had any allure for me in that moment was the ocean that churned and crashed on the horizon. Excited to wade into the inky blue, I began to pull my hearing aids from my ears, stopping as my mom told me the people in the wet suits would want to talk to us (several other kids had arrived by this time) before we would plunge into the ocean. As far as I was concerned, the only practice I would need with surfing I had already gotten from my neighbor’s old see-saw. I would scramble up on it and tip back and forth until one of my parents came to disengage me from the task that I had set myself to.

The lesson came soon enough for my restless soul. I sat with a feigned patience as the instructed explained, as my mother already had, what to do in a riptide. Then they explained how to pop-up. They laid on the board, chest on the rigid plastic, as if to do a push-up. Then, they did push themselves up, springing their legs underneath them and spreading their arms out, so they almost looked as if they were trying to imitate a hawk, circling, circling, circling. I put my arms to either side of my chest, pushed myself up, felt an exhilarating rush as my legs were suddenly there to catch me, and thrust my arms out to the side just as hawkish as was shown to me.

They said to do it again, which I readily complied to. Then, we did it again. I soon tired of the exercise, and again yearned to embark on the sea. My instructor came to me introducing himself as Matt. I said “hi” displacently, complaining to my mom that I wanted to go surfing. She looked to the instructor as he said that he was ready to take me out. My hearing aids were out before I knew what I was doing. The instructor was still talking, but I didn’t hear. The world was silent. Oh, so peacefully silent!

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“Go. Go. Go.” I was on my feet as the wave fizzled around my board. The smell of salt nipped pleasantly at my nose. I could taste the rushing sea air on my tongue. The blue was calming. The board was steady beneath my feet. The world was silent. The wave did not crash as it should have on my board. It was oddly fitting. I felt at peace as the coast sped closer and closer.

The board began to slow. I toppled off. The brown murk swirled about me when I opened my eyes with a sudden jolt of panic. The sand tickled against my feet. The board passed over me. I felt the panic ebb away as it was replaced with a wonder. Even the board’s shadow was so serene. I loved it. I felt the leash tug me towards the coast much in the way any dog would. The board was no longer over me. My lungs began to burn, so I lifted my head above the water. Another wave came, causing me to stumble for the coast. My instructor waded towards me. Before he could open his mouth to utter a sound, I was imploring him to do it again. He made a comment to my parents that I did not hear. As I scrambled on the board, I didn’t care about anything except surfing again. And so, we did.

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Every time he made a comment that I didn’t hear. I wasn’t bothered by this. In the past, anytime I had insisted to know the dialogue I found myself strangely disappointed. I didn’t know that he was impressed at my eagerness to do it each time. I still don’t know what my parents said in reply, but I do know the silence as I stood was amazing, refreshing as I smelled the salty air that can only be found on the sea. Without the sound, I had nothing to focus on but the amazing calm that only came when the sea raged around me, propelling me swiftly forwards. I didn’t mind not hearing. Even just for that moment, I was glad for it.

And I never did encounter a rip tide.

 

Julia Resciniti was diagnosed with moderate sensorineural hearing loss just before her third birthday. She’s currently in seventh grade at her neighborhood school where she’s been on high honor roll every marking period. Julia enjoys reading, sewing, and listening to music.

Julia is the subject of her mother’s book about parenting a child with hearing loss, Magic Ear Kids, available in print and kindle editions from amazon.com Magic Ear Kids.

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Coming Full Circle With Technology

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Growing up, even as a child of the 80s, I’ve have never been great with technology. I can post pictures on Facebook and record my favorite Housewife reality show on my DVR, but nothing much more advanced. When our family began our journey with two children with hearing loss, technology was an idea that terrified me. As I began my research after our children were diagnosed, I quickly felt that without getting an engineering or medical degree in my spare time, I would never understand the explanations I was given for the equipment being used to identify their hearing loss–nor the technology being suggested to help my babies hear better. Our son Harrison was identified at birth and our daughter Alexis was correctly diagnosed at four years old after a misdiagnosis at birth.

I thought my involvement with hearing aids stopped at picking out cute colors, not learning a second-language to understand words like hertz, tympanograms, sensorineural, and cookie-bite hearing loss (a configuration of hearing loss with less sound perception in the middle frequencies). I felt like I was drowning in a sea of alphabet soup with all the ABRs, OAEs, ENTs, FMs, IEPs and IFSPs. Dealing with all of this while adjusting to being a new mom of three children all under age four was too much for my sleep deprived non-technical mind. For the first few months, I put the dreaded “T” word out of my mind, vowing only to deal with it on an ‘as needed’ basis as they entered school.

As the years went on, and my kids got older, I noticed how my lack of knowledge for technology was limiting them, both in and out of the classroom. My children were having problems with their FM equipment in their schools, and I didn’t know what other options there were. My son was beginning to struggle hearing his soccer coach as the fields got bigger and instruction was coming from further away. My daughter began to shy away from popular adolescent activities such as talking on the phone and going to movies because she could not hear the words clearly. I watched how different my middle son Cole, who has typical hearing, was moving through life compared to my two kids with hearing loss.

Motivated by Necessity

I decided it was time to embrace my fear of technology and, along with my children, learn all I could. I began researching personal FM systems, personal closed captioning devices, closed captioning devices available in public areas, captioned telephones–anything I could find to help bridge the gap so my kids could participate as their peers did. Along with community organizations, school professionals and various websites, other parents of kids with hearing loss were the most helpful in sharing what worked and didn’t work for their kids and guiding me to available options. There has been lots of trial and error, and it’s still a dreaded task for me to research technology. Yet we’ve learned which movie theaters provide our preferred “rear view mirror” closed captioning devices rather than the “captioning glasses”. We’ve experienced which captioning devices are out of range in the balcony seats at our local playhouse. We’ve purchased personal FM Systems and devices to connect hearing aids wirelessly to TVs/music/computers for our children to use outside of school in various activities. We can’t wait for the weather in Las Vegas to cool down and we can wirelessly connect our stereo to the kids’ hearing aids at the drive-in theater so they can sit outside the car and still hear the movie! We’ve downloaded apps and received a telephone from a local deaf/hard of hearing services agency so they can have their phone conversations captioned. The kids have their own bed shaker alarm clocks to help with independence. While having access to all our technology definitely makes life easier, it does not solve all the issues my kids have faced. Simply knowing what options are available (and knowing our kids’ rights through IDEA and the ADA – Americans with Disabilities Act), my husband and I have had educated discussions with the schools and professionals and offer solutions to problems.

Finding A New Passion

To my surprise, all this technology I had been dreading for years wasn’t all that scary. The most surprising element in giving up my own fear was the fact that my daughter discovered her own passion for technology as it pertained to her personally having hearing loss. Beginning last year, our children began attending school at a STEAM Academy (Science, Technology, Engineering, Art, and Math). Our daughter especially began to embrace her hearing loss and used it as the basis for every technology based-presentation she could, including “The History of Hearing Devices” and “People Who Are Deaf/Hard of Hearing Can Do Anything”. She recently attended a Girl Scout summer camp focused on technology, and her final project was to code a computer game. While I can still barely turn on a computer without reading the directions, I was not only amazed she generated a “Choose Your Own Adventure” type game, but that she chose Heller Keller as the main character. She navigated her “Helen” avatar on journeys all over the world for other kids to learn about her experiences. Watching my daughter present this computer game she had coded by herself brought tears to my eyes. I remembered how terrified I was six years ago at not only the thought of how to raise children who had hearing loss, but also the responsibility of understanding the technology that tends to come along with our kids. In an instant, my personal journey with technology, while never-ending, had come full circle. Letting go of my own past fears was the true gift I can give to my children. And, thanks to my technology-creating daughter, I can now quote Helen Keller as saying; “Fear: the best way out is through.”
Editor’s note: Jones serves the NV Chapter as Guide by Your Side Coordinator.

 

This article and many more are found in The Communicator. To receive quarterly issues:  The Communicator.

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