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An Adoption Story: A Deaf Brother

“I have something to tell you,” my sister said. “Aunt Gertie had a baby and placed him for adoption.”

The news was quite a surprise, for I was in my early 20’s and had no idea that my aunt had a baby many years ago.

“I want to find him,” I said.

I didn’t have much information to turn to — I just knew that the baby was a boy and I knew the name of the hospital he was born at.

Several years ago, a group of researchers from the National Institute of Health came to my house and took blood tests of my family members. All of us were born with normal hearing and several of us lost our hearing in various ways. The researchers uncovered a very rare mitochondrial mutation — we were the third family in the world identified with this hereditary condition.

“The gene passes from females to all children,” the researchers told us.

As I pondered the gene’s path through our family tree, I realized that Aunt Gertie’s son had the gene. I started asking deaf and hard of hearing friends in the St. Louis area if they were adopted.

One evening, one of my sisters was talking to a cousin and the cousin casually mentioned that Aunt Gertie’s son had called another cousin. He was looking for his birth mother.

“What’s his name?” I asked.

Luckily, my cousin had written his name down and kept it in a drawer.

“Brian Crites.”

I quickly Googled his name and on impulse, I added “deaf.”

Bingo.

As I stared at his picture, I realized the reason my cousin kept the information a secret from us.

Brian looked exactly like my dad.

Which would make him…my half brother.

I quickly looked up his phone number and debated whether or not to call him. It was 9 p.m. on a Sunday night. I just knew I couldn’t wait another day. I dialed his number.

Brian and I spent about 30 minutes talking on the phone, both in shock and awe. He had spent years wondering about his birth family and now he was able to get the answers he was seeking.

Brian and I texted back and forth every day. We discovered we had so much in common — water skiing (he even tried to barefoot as a teen), triathlons (I had just signed up for my first one), a love for the outdoors, photography, leadership, and…food. To top it off, he graduated from Rochester Institute of Technology, the same college that my three kids attended.

And…Brian is deaf. Like me, he began losing his hearing in elementary school. He learned sign language at RIT. He obtained bilateral cochlear implants several years ago.

Even though Brian looked just like my father and my brothers, we wondered how we could determine the genetic connection without any doubt. My father had passed away, there was no way to confirm paternity.

We got lucky. A very kind counselor at the adoption agency went through the records and pulled out Brian’s file. He read through the file word for word. There, in the files, my aunt confirmed my father as Brian’s father.

This story has an incredible, happy ending. My mother embraced Brian as both her nephew and my father’s son. Just days before we told her the news of finding Brian, she had been thinking about her sister’s son. (We never, however, told her of our conversations with the adoption agency and the news we had confirmed.) I believe the timing was so very right — my mom was in a place where she could love him with all of her heart.

Brian and my mom share a laugh

We love Brian as if he had always been with us. We’ve gotten to know his wife, daughter, and his mother. We’ve shared vacations, weekends together, and funerals. Growing up, we were a family of five siblings — and now we are six.

 

Karen Putz is known as The Passion Mentor. For a daily dose of passion, follow her on Instagram at The Passion Academy. For even more passion, hop over to her site: Ageless Passions. To unwrap your own passion, grab the book, Unwrapping Your Passion.

How Can a Deaf Person Do Podcast Interviews?

I just wrapped up an enjoyable podcast chat with Thom Walters over at Zen Commuter. I actually enjoy doing podcasts. For one thing, I can do them in my pajamas and I’m always talking about my favorite topic: PASSION.

But wait a minute…

How does a deaf gal do podcasts if she can’t hear over the phone?

I use a system called ZVRS–it’s a videophone service that provides a sign language interpreter for every phone call. The interpreter listens in on the podcast interview and signs everything that the podcaster says. (And I mean everything–if a podcaster burps, the interpreter signs that burp!) I speak directly back to the podcaster using a headset. Whenever I do interviews for the books I’m writing, I use this system as well. You can view it here: How a Deaf Gal Uses the Phone.

 

Here’s what Chris Brogan, Owner Media, has to say about using the system for an interview:

“I wondered exactly how she’d interview me. You have to know that this was the MOST seamless experience I’ve ever had with translations/interpretation tools.”

(By the way, Chris has an awesome newsletter that goes out every Sunday chock full of helpful stuff for running a business and life: chrisbrogan.com/nl)

The first time I did a podcast, I loved it. There’s something so fun about just having a conversation and sharing what you know with others. I still get nervous now and then and my voice cracks occasionally, but I find that the more I do, the better I become at answering questions and sharing stories.

For many, many years, the phone was my enemy. It was the barrier between me and the rest of the world. My father had to handle all my phone calls during my teen years ( my mom was deaf). As you can imagine, it’s really no fun having your dad relay messages from friends and boyfriends!

It took me six years and over 200 interviews to write Unwrapping Your Passion, Creating the Life You Truly Want. Many of the interviews were done over the phone. I typed my notes word for word while watching the interpreter sign on screen.

So, I often give thanks to the amazing technology we have today that breaks down the barriers for communicating with one another.

Here’s some of the podcasts I’ve participated in:

You Leading You with Sean Ackerman — Conquering Adversity Barefoot

Natural Born Coaches with Marc Mcwhinney — A Passion for Life

Marketing for Public Speakers with Jason Owens — How to Break Free From Being Paralyzed by Perfection

She Wrote a Book with Lena Anani  — Living With Passion

Newstalk 1010 with Jeff Sammut — Author of Unwrapping Your Passion (audio only)  transcript pending

The Shut Up Show — Putting Your Feet Back in the Water

Be Inspired with Jen McDonough — Overcoming Adversity

Reinvention Radio with Steve Olsher

B-Now Radio: Unwrap Your Passion at Any Age

Cynthia Mazzafero interviews Karen Putz

The Best Podcasts With Transcripts

There’s nothing more frustrating to a deaf person than seeing what looks like an awesome podcast–and no way to access it. As a deaf person, I obviously can’t listen to podcasts, but because podcasts are one of the best ways to learn new things and meet new people, I truly appreciate those that come with complete transcripts.

I have found that people with normal hearing also appreciate transcripts, for if they are short on time, they will look through a transcript before committing their time to listen to the full podcast.

Another big advantage for podcasts that have transcripts: transcripts show up in web searches.

Over the last several years, I’ve been “listening” to podcasts via transcripts. Here are some of the best:

 

Jaime Masters, The Eventual Millionaire 

Jaime Masters interviews millionaires to discover their secrets and how they rose to the top.

 

Luis Congdon and Kamala Chambers, Thriving Launch

Luis and Kamala feature interviews from well-known individuals in the self-help field, such as Jack Canfield, Gretchen Rubin, and more.

 

Michael Hyatt, Lead to Win

Michael Hyatt provides tips on how you can live your best life as well as leadership strategies for those in the corporate world.

 

Pat Flynn, Smart Passive Income

Pat was one of the earliest podcasters to add transcripts. Pat covers a variety of topics related to earning money from the internet to interviews with well-known web personalities.

 

Tim Ferriss Show

Tim is known as the “Four Hour Work Week” guy. To get the transcripts, you do have to trade in your email address to access them.

 

Freakonomics

Anything and everything is discussed in this daily podcast.

 

Karen Putz is known as The Passion Mentor. She specializes in helping others unwrap their passion at ANY age. She is the author of Unwrapping Your Passion, Creating the Life You Truly Want.

 

 

"Blindness cuts you off from things. Deafness cuts you off from people."

The quote is believed to have come from a letter to Dr. James Kerr Love (1910), published in Helen Keller in Scotland:

The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.

 

I never know if I'm lipreading someone correctly. This was apparent during a recent conversation in the boat with a friend, when he realized the conversation was way off the topic. I completely misread what he was communicating and he stopped the conversation to clarify my understanding. Turns out, I was indeed way, way off.

Some days, the communication flow is completely ON and the back and forth banter is easy. Other days, the communication dance is an awkward one, especially in group conversations where words shoot back and forth at the speed of light. Without communication access and adaptations of some kind, whether text, sign, or lipreading, there are times when I feel completely alone in a room full of people.  That's what Helen Keller was referring to about being cut off from people.

I feel this every time I come across a video that isn't captioned or a podcast with no transcript. A piece of the world is cut off.

The one that hurts the most is the "never mind."

Sometimes it is hard for others to comprehend the communication challenges that come with being deaf or hard of hearing.  "You're not really... deaf, are you?" is a question that pops up now and then.  More than once I've shown up at an event or workshop with an interpreter, much to the disbelief of friends who've communicated with me just fine one-on-one.  Lipreading a room full of people is impossible.  I attempted this at a workshop given by a well-known motivational speaker. I think I walked away with about 15% of what was said.  Think of it this way--you wouldn't want to listen to the radio when it's full of static and fades in and out, would you? An interpreter makes my world come in with surround sound.

Any time two people dance together, they have to be in sync to make it work. And so it is with the dance of communication. So the next time we're together, I'd love it if you'd reach out and do this dance thing in sync with me.  I'm always thankful for the people in my life who understand the communication challenges and do what's needed to make the dance a smooth one.

 

 

 

 

 

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The Dance of Communication

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There’s a famous quote of Helen Keller that gets to me. How it rubs me depends on whether I’m having a challenging day or feeling on top of the world.

“Blindness cuts you off from things. Deafness cuts you off from people.”

The quote is believed to have come from a letter to Dr. James Kerr Love (1910), published in Helen Keller in Scotland:

The problems of deafness are deeper and more complex, if not more important, than those of blindness. Deafness is a much worse misfortune. For it means the loss of the most vital stimulus — the sound of the voice that brings language, sets thoughts astir and keeps us in the intellectual company of man.

 

I never know if I’m lipreading someone correctly. This was apparent during a recent conversation in the boat with a friend, when he realized the conversation was way off the topic. I completely misread what he was communicating and he stopped the conversation to clarify my understanding. Turns out, I was indeed way, way off.

Some days, the communication flow is completely ON and the back and forth banter is easy. Other days, the communication dance is an awkward one, especially in group conversations where words shoot back and forth at the speed of light. Without communication access and adaptations of some kind, whether text, sign, or lipreading, there are times when I feel completely alone in a room full of people.  That’s what Helen Keller was referring to about being cut off from people.

I feel this every time I come across a video that isn’t captioned or a podcast with no transcript. A piece of the world is cut off.

The one that hurts the most is the “never mind.”

Sometimes it is hard for others to comprehend the communication challenges that come with being deaf or hard of hearing.  “You’re not really… deaf, are you?” is a question that pops up now and then.  More than once I’ve shown up at an event or workshop with an interpreter, much to the disbelief of friends who’ve communicated with me just fine one-on-one.  Lipreading a room full of people is impossible.  I attempted this at a workshop given by a well-known motivational speaker. I think I walked away with about 15% of what was said.  Think of it this way–you wouldn’t want to listen to the radio when it’s full of static and fades in and out, would you? An interpreter makes my world come in with surround sound.

Any time two people dance together, they have to be in sync to make it work. And so it is with the dance of communication. So the next time we’re together, I’d love it if you’d reach out and do this dance thing in sync with me.  I’m always thankful for the people in my life who understand the communication challenges and do what’s needed to make the dance a smooth one.

 

 

 

 

 

Mark J. Sorokin, Attorney

mark deaf attorney
Mark Sorokin, Esq. is an attorney practicing in Connecticut, Maryland, and Washington, D.C.
Tell me about your job, career, or calling. How did you get into this line of work?
I fell into it somewhat.  My father is an attorney, and upon graduating college, I had no idea what I wanted to do.  He helped me get a job as a paralegal at a law firm, and I enjoyed it so much that I decided to apply to law schools.  Have not looked back since.
What are some of the challenges?
As a solo practitioner, I don’t have the benefit of a supervising attorney, so I have to do tons of research to make sure that the decisions I make are correct.  Also, marketing is a huge challenge – getting my name out there and gaining prospective clients’ confidence.  Sometimes prospective clients or opposing counsel will call me and not understand how the relay system works.  But usually once they understand it, it becomes a non-issue.
 What was it like growing up deaf/hard of hearing?
It was difficult.  I was mainstreamed through all of public school, and I experienced a lot of difficulties socially as the only deaf student in my school.  My mother always told me that things would get better as I got older and people started understanding  (in a good way) what made me different.  And as I got older, I understood that I controlled what I did far more than what other people did.
What advice would you give a deaf/HH person who is looking for a job, career or calling like yours?
Read a lot.  Write a lot.  Understand how the world works around you – both on a macro and on a micro level – and how to communicate with other people effectively.  This concept is vastly different from the ability to argue with other people, which doesn’t always win you favors.

 Sorokin Law Offices

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It was fun watching Lauren and Steven play together on the same team.  They were like twins--with their own unspoken language between them.

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What a team!

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Lauren and Steven with Gallaudet president, T. Alan Hurwitz:

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Two great coaches who spent hours and hours with the students. Jamie Nick and Kathy Craig:

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Midwest Deaf Academic Bowl Champs

With nine wins and no losses, the Hinsdale South team claimed the Regional title at the 2013 Midwest Academic Bowl held at the Illinois School for the Deaf in Jacksonville, Illinois.

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Both Lauren and Lauren Holtz were selected for the All-Star Team:20130210-105940.jpg

Kyle Adams from Hersey High School clowns around with Hinsdale South’s winning trophy:

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It was fun watching Lauren and Steven play together on the same team.  They were like twins–with their own unspoken language between them.

20130210-110020.jpg

What a team!

20130210-110043.jpg

Lauren and Steven with Gallaudet president, T. Alan Hurwitz:

20130210-110102.jpg

Two great coaches who spent hours and hours with the students. Jamie Nick and Kathy Craig:

20130210-110127.jpg

Santa Claus is Coming to Town, Rudolph the Red Nosed Reindeer, Christmas (Baby Please Come Home), Frosty the Snowman, All I Want for Christmas is You, Jingle Bells, Merry Christmas, Happy Holidays, and Let it Snow.

ABC News grabbed a video of the first song:

ICODA Performance at Woodfield Mall

All I Want for Christmas is You

This was Steven's first time performing with the ICODA group and he really surprised the heck out of me. This was the kid who was so shy as a youngster--the one I could never imagine on stage-- and there he was today, signing away with a smile.

Lauren is in her fourth year with ICODA and she's quite a joy to watch on stage. I'm in awe every time I watch her in a role or signing a song.

If you have a deaf or hard of hearing child in the Chicago area who would like to join the next production, contact ICODA at:

info@icodaarts.org

 

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Signing the Holiday Songs

If you saw me in the audience at Woodfield mall today, you’d spot my beaming smile from a mile away. I watched Steven and Lauren perform with the Traveling Hands Troupe from the International Center on Deafness and the Arts. The kids signed holiday songs in American Sign Language:

Santa Claus is Coming to Town, Rudolph the Red Nosed Reindeer, Christmas (Baby Please Come Home), Frosty the Snowman, All I Want for Christmas is You, Jingle Bells, Merry Christmas, Happy Holidays, and Let it Snow.

ABC News grabbed a video of the first song:

ICODA Performance at Woodfield Mall

All I Want for Christmas is You

This was Steven’s first time performing with the ICODA group and he really surprised the heck out of me. This was the kid who was so shy as a youngster–the one I could never imagine on stage– and there he was today, signing away with a smile.

Lauren is in her fourth year with ICODA and she’s quite a joy to watch on stage. I’m in awe every time I watch her in a role or signing a song.

If you have a deaf or hard of hearing child in the Chicago area who would like to join the next production, contact ICODA at:

info@icodaarts.org

 

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.

Starting up the non-profit organization sure wasn't easy, but it sure was worth it-- and it happened because a team of parents, professionals and deaf and hard of hearing adults believed in the mission as well. Today, Illinois Hands & Voices has expanded under the leadership of two more presidents and includes a state-wide Guide By Your Side program.

As the years went on, Hands & Voices grew from four chapters and expanded worldwide. There clearly was a need for support without bias for parents of deaf and hard of hearing children on the parenting journey.  Every now and then, I will cross paths with someone who feels Hands & Voices is:

  • Not neutral
  • Not balanced enough
  • Not without bias
  • More "hands" than voices
  • More "voices" than hands

Before I go any further, I invite you to read Hands & Voices, Supporting Families Without Bias by Leeanne Seaver. This document goes into great detail about the Hands & Voices approach to supporting families.

In the early days of running the organization, I was often thrown into one camp or another based on someone's judgment of my communication experience, my personal choices for my children or the communication methods used. To me, that judgement represented everything that Hands & Voices is not. When I look at the families, professionals and deaf/hard of hearing adults involved with Hands & Voices, I see caring individuals who have a heart for children and their futures and I feel really blessed to have crossed paths with so many of them.  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 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.

Hands & Voices who do you stand for

 

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Neutral is a Shade of Color, Not an Organization

Hands & Voices gathering

Eons and eons ago, Leeanne Seaver, the then Director of Hands & Voices issued me a challenge: start up the Illinois chapter of Hands & Voices.

I hesitated. I had just completed four years with the team from West Suburban Association of the Deaf, growing it from a tiny deaf club with 44 members into a 501c3 non-profit– one of the few which still exist today.  I had three little kids two years apart in age and I worked part-time at the local community college. Did I really want to take on the challenge of starting another non-profit, this time from scratch?

I didn’t hesitate for long, and here’s why: because every single day, 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.

Starting up the non-profit organization sure wasn’t easy, but it sure was worth it– and it happened because a team of parents, professionals and deaf and hard of hearing adults believed in the mission as well. Today, Illinois Hands & Voices has expanded under the leadership of two more presidents and includes a state-wide Guide By Your Side program.

As the years went on, Hands & Voices grew from four chapters and expanded worldwide. There clearly was a need for support without bias for parents of deaf and hard of hearing children on the parenting journey.  Every now and then, I will cross paths with someone who feels Hands & Voices is:

  • Not neutral
  • Not balanced enough
  • Not without bias
  • More “hands” than voices
  • More “voices” than hands

Before I go any further, I invite you to read Hands & Voices, Supporting Families Without Bias by Leeanne Seaver. This document goes into great detail about the Hands & Voices approach to supporting families.

In the early days of running the organization, I was often thrown into one camp or another based on someone’s judgment of my communication experience, my personal choices for my children or the communication methods used. To me, that judgement represented everything that Hands & Voices is not. When I look at the families, professionals and deaf/hard of hearing adults involved with Hands & Voices, I see caring individuals who have a heart for children and their futures and I feel really blessed to have crossed paths with so many of them.  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 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.

Hands & Voices who do you stand for

 

I got my first computer when I was about eight years old, it was a ZX Spectrum 48k. A few friends had a Spectrum too and we spent countless hours playing all of the great games that were released for the machine; classics like Horace Goes Skiing and Jet Set Willy had us glued for hours but look and play horribly when compared to today's XBox and Playstation blockbusters.

It was those games that got me into software development: I didn't just want to play them I had to know how they worked too. I taught myself how to program the Spectrum so I could make my own games. I wanted to make games for a living, which I never quite did but my fascination with software took me into programming for businesses and website development.

What is the best part of your job, career, or calling?

Software development is constantly evolving and new ideas and ways to write programs are appearing all the time. I've been writing software professionally for 19 years and I'm still learning new things every day. That's the most exciting thing. You have to stay on your toes, keep learning, finding new and better ways of creating. Software development is still a fairly young discipline and we're all still really working out the best way to go about it! People are pushing it in all different directions and it is very interesting to watch and learn from.

What are some of the challenges?

Most offices these days are open-plan, which isn't great for someone with a hearing problem. There's a lot of noise coming from all directions and hearing is a challenge. I am constantly surprised by how well, and how far, other people can hear across the open-plan desks - I'll be having a conversation with someone next to me and another person from several desks down will chip into the conversation, how can they hear from way down there?! I have to constantly remind myself that others can, and will be, listening into the conversation I'm having at my desk. If we ever shuffle seats then I try and get a seat with a wall at my back so that the directions that voices are coming from is reduced a little bit.

The telephone is of course a major problem. I'm generally not great with phones but the office is worst of all, the background noise makes it impossible to hear, especially if its a call involving more than two people, its really hard to follow multiple voices. And meetings where people are using desk-phones are the bane of my life! I use instant messaging system like Skype as much as I can instead of phoning but often people want the human element of a phone call, where I can I book a meting room for myself and use a phone on loud speaker, not having the handset pressed to my ear works better for me.

Medium to large meetings are often difficult, especially when multiple people are talking. It's not just difficult to hear in large rooms but it is very hard for me to localize the voice - I can often hear what someone aid but am not sure who said it! If I'm booking a meeting myself then I always make sure I book a small meeting room in a quiet part of the building and I always get a good seat with a wall behind me and everyone facing me - a little preparation goes a long way.

What was it like growing up deaf/hard of hearing?

I was diagnosed with a mild hearing loss when I was five. My parents got me a pair of behind-the-ear aids from the NHS, which I wore some of the time, mostly at school. I hated them. I think I wore aids at school until I was about eleven and was moving up to secondary-school - from then on, until I left school I didn't wear them much at all. I knew I was missing some stuff but I was still getting by OK with close-by conversations and, to be honest, missing some stuff and muddling by seemed far better than wearing hearing aids to 13-year-old me. People were largely OK with my aids and I don't remember getting teased about them at all, my reasons for not wearing them were all in my own head. By the time I was 13-15 my hearing was getting a bit worse and hearing teachers was probably the hardest part of school. Would I have done better in school if I'd worn my hearing aids? Absolutely. My grades were OK but they could have been much better had I heard what was going on!

I stupidly thought I was getting away with hiding my hearing loss, but of course I wasn't. People knew, probably everyone knew but no-one really mentioned it, only on occasions friends with jibe a little about it but nothing nasty - it was those times that I got a bit of a wake up call and realized how much I was missing.

What advice would you give a deaf/HH person who is looking for a job, career or calling like yours?

I don't think a hearing problem should negatively affect your ability to work in software development. More and more companies are using remote teams and communicate mostly using Skype and email, which would be idea for some with hearing loss - these companies tend to be startups or smaller businesses.

For larger companies, open-plan offices are very popular, if you get the choice of where to sit then think about the best place for you to hear; try and sit with your back to a wall, a corner seat would be the best as you minimize the sounds around you.

I have always, always, told potential employers about my hearing loss at interviews. If you try and hide it then you are setting yourself up for big problems down the line. If I enter an interview and I can hear everyone OK then I don't mention it straight away, I leave it to the end so that I've hopefully already shown them I can communicate OK it certain circumstances. But always mention it and be honest about it.

For anyone wanting to get into software development a portfolio is a must. That would be an obvious thing for an artist or a graphic designer but most programmers don't create one. If you have a strong body of work to show then you are already ahead of most people.

Steve's site: Hearing Aid Know

 

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Steve Claridge, Software Engineer

Tell me about your job, career, or calling. How did you get into this line of work?

I’m a software engineer. I started out working for a company that built PC software for hospital radiology departments, then I worked for an academic publisher and then for the molecular imaging department of a corporate behemoth. After those jobs I wanted to get more into the Web and joined another academic publisher, which is where I am today, I build and maintain numerous websites and other systems.

I got my first computer when I was about eight years old, it was a ZX Spectrum 48k. A few friends had a Spectrum too and we spent countless hours playing all of the great games that were released for the machine; classics like Horace Goes Skiing and Jet Set Willy had us glued for hours but look and play horribly when compared to today’s XBox and Playstation blockbusters.

It was those games that got me into software development: I didn’t just want to play them I had to know how they worked too. I taught myself how to program the Spectrum so I could make my own games. I wanted to make games for a living, which I never quite did but my fascination with software took me into programming for businesses and website development.

What is the best part of your job, career, or calling?

Software development is constantly evolving and new ideas and ways to write programs are appearing all the time. I’ve been writing software professionally for 19 years and I’m still learning new things every day. That’s the most exciting thing. You have to stay on your toes, keep learning, finding new and better ways of creating. Software development is still a fairly young discipline and we’re all still really working out the best way to go about it! People are pushing it in all different directions and it is very interesting to watch and learn from.

What are some of the challenges?

Most offices these days are open-plan, which isn’t great for someone with a hearing problem. There’s a lot of noise coming from all directions and hearing is a challenge. I am constantly surprised by how well, and how far, other people can hear across the open-plan desks – I’ll be having a conversation with someone next to me and another person from several desks down will chip into the conversation, how can they hear from way down there?! I have to constantly remind myself that others can, and will be, listening into the conversation I’m having at my desk. If we ever shuffle seats then I try and get a seat with a wall at my back so that the directions that voices are coming from is reduced a little bit.

The telephone is of course a major problem. I’m generally not great with phones but the office is worst of all, the background noise makes it impossible to hear, especially if its a call involving more than two people, its really hard to follow multiple voices. And meetings where people are using desk-phones are the bane of my life! I use instant messaging system like Skype as much as I can instead of phoning but often people want the human element of a phone call, where I can I book a meting room for myself and use a phone on loud speaker, not having the handset pressed to my ear works better for me.

Medium to large meetings are often difficult, especially when multiple people are talking. It’s not just difficult to hear in large rooms but it is very hard for me to localize the voice – I can often hear what someone aid but am not sure who said it! If I’m booking a meeting myself then I always make sure I book a small meeting room in a quiet part of the building and I always get a good seat with a wall behind me and everyone facing me – a little preparation goes a long way.

What was it like growing up deaf/hard of hearing?

I was diagnosed with a mild hearing loss when I was five. My parents got me a pair of behind-the-ear aids from the NHS, which I wore some of the time, mostly at school. I hated them. I think I wore aids at school until I was about eleven and was moving up to secondary-school – from then on, until I left school I didn’t wear them much at all. I knew I was missing some stuff but I was still getting by OK with close-by conversations and, to be honest, missing some stuff and muddling by seemed far better than wearing hearing aids to 13-year-old me. People were largely OK with my aids and I don’t remember getting teased about them at all, my reasons for not wearing them were all in my own head. By the time I was 13-15 my hearing was getting a bit worse and hearing teachers was probably the hardest part of school. Would I have done better in school if I’d worn my hearing aids? Absolutely. My grades were OK but they could have been much better had I heard what was going on!

I stupidly thought I was getting away with hiding my hearing loss, but of course I wasn’t. People knew, probably everyone knew but no-one really mentioned it, only on occasions friends with jibe a little about it but nothing nasty – it was those times that I got a bit of a wake up call and realized how much I was missing.

What advice would you give a deaf/HH person who is looking for a job, career or calling like yours?

I don’t think a hearing problem should negatively affect your ability to work in software development. More and more companies are using remote teams and communicate mostly using Skype and email, which would be idea for some with hearing loss – these companies tend to be startups or smaller businesses.

For larger companies, open-plan offices are very popular, if you get the choice of where to sit then think about the best place for you to hear; try and sit with your back to a wall, a corner seat would be the best as you minimize the sounds around you.

I have always, always, told potential employers about my hearing loss at interviews. If you try and hide it then you are setting yourself up for big problems down the line. If I enter an interview and I can hear everyone OK then I don’t mention it straight away, I leave it to the end so that I’ve hopefully already shown them I can communicate OK it certain circumstances. But always mention it and be honest about it.

For anyone wanting to get into software development a portfolio is a must. That would be an obvious thing for an artist or a graphic designer but most programmers don’t create one. If you have a strong body of work to show then you are already ahead of most people.

Steve’s site: Hearing Aid Know

 

In my family, there are five generations of relatives who are deaf and hard of hearing. Every now and then, a discussion would come up among us—what if there was a non-surgical solution to restoring hearing?   I recently came across an article sent to me via my blog, about the first stem cell clinical trials being done in Houston, Texas.  I also came across an article opposing the research.

I got in touch with the research team to find out more about using stem cells to restore hearing.  The idea of using stem cells to improve hearing first came about from a casual conversation between Linda Baumgartner and her husband, neurosurgeon Dr. James Baumgartner.  “Jim did a few other studies with stem cells for other issues and I asked him, ‘Is this something we can do for babies with hearing loss?’’ said Linda.  Jim was working on a trial using bone marrow for patients with traumatic brain injuries and he was intrigued with Linda’s idea so he did some research and talked to several researchers.

Dr. Baumgartner came across previous research done in Italy which showed successful results using mice.  “The study used infant mice and exposed them to noise, antibiotics, or both-- to create hearing loss,” he said.  “All of the mice were injected with human stem cells through the abdomen.  The damaged hair cells grew again—the nerves reconnected.  The cells from the human cord blood triggered the mice's own hair cells to grow again.”

The FDA approved a license for the first human trials on ten patients, ages six months to eighteen months.  Children's Memorial Hermann Hospital in Houston, Texas and Cord Blood Registry(r) (CBR) identified two babies to receive the treatment.  The first baby, whose hearing loss resulted from CMV exposure, received the first stem cell infusion on January 23, 2012.

I asked Dr. Baumgartner about the side effects from stem cell treatments and he assured me that the procedure had a strong safety record.   “Safety is our goal.  People  are often scared of stem cell research—they freak out,” he explained.  “Autologous blood, giving people back their own blood products, is safe.”

Once the trial shows results with at least five infants, the team can request FDA approval for the second phase which will allow an increase dosage of stem cells.  The third phase would include double-blind random trials.   “I feel my hypothesis is strong and I’m hopeful we will get good results,” said Dr. Baumgartner.

In a discussion with a friend, she revealed that she was scared about the potential success of the stem cell trials.  “It scares me to think that we would lose the beauty of deaf and hard of hearing people in the world.  The world would be so bland without that diversity,” she said.  “Think of how the world would be without the contributions of Beethoven… or Edison… or Vint Cerf—the father of the internet.  They are all deaf and hard of hearing and they contributed something valuable to the world.”

My own feelings were very mixed on this.  I spent the last twenty six years getting really comfortable with myself after going from hard of hearing to deaf.  In sharp contrast to the teen who hid every sign of hearing loss, the teen who became deaf at nineteen learned to embrace a whole new world that included American Sign Language.  My world truly opened up after becoming deaf and I saw the change as a blessing.  I learned to embrace the gift I was given.

I asked Dr. Baumgartner about research on families like mine—five generations due to a mitochondrial gene. My daughter will pass this gene on to her children.  He explained that bone marrow trials may be promising.  “Your own bone marrow won’t work. If you use a different person’s blood, one without the genetic cause, another person’s bone marrow would allow the organ of corti to repair itself,” he said.

Talking to Dr. Baumgartner on the phone using an interpreter and learning about the possibility of growing new hair cells—like I said, this brought on mixed feelings. On one hand, there was the excitement at the possibility of progress, of being able to restore hearing.  I thought of my siblings—I know each and every one of them would jump at the chance of being able to hear again.

I asked my daughter how she felt.  “I want deaf kids,” she said. “It makes me kind of sad to think of the world without deaf and hard of hearing people in it.”

Yes, deep inside of me, there was a bit of sadness.  I believe the world is a more vibrant, colorful place with the tapestry of deaf and hard of hearing people who have crossed my path over the years.  I cannot imagine a world without them.

Karen Putz is a mom of three deaf and hard of hearing teens.  She blogs at www.deafmomworld.com and www.deafhhcareer.com.

Families who are interested in participating in the clinical trial can obtain more information at:
http://www.cordblood.com/hearingloss

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The New Stem Cell Research for Hearing Loss

Back in January, 2012, I talked to the research team at Children’s Memorial Hospital in Houston about the first human trials using stem cells to improve hearing. What follows is an article published in the Communicator:

In my family, there are five generations of relatives who are deaf and hard of hearing. Every now and then, a discussion would come up among us—what if there was a non-surgical solution to restoring hearing?   I recently came across an article sent to me via my blog, about the first stem cell clinical trials being done in Houston, Texas.  I also came across an article opposing the research.

I got in touch with the research team to find out more about using stem cells to restore hearing.  The idea of using stem cells to improve hearing first came about from a casual conversation between Linda Baumgartner and her husband, neurosurgeon Dr. James Baumgartner.  “Jim did a few other studies with stem cells for other issues and I asked him, ‘Is this something we can do for babies with hearing loss?’’ said Linda.  Jim was working on a trial using bone marrow for patients with traumatic brain injuries and he was intrigued with Linda’s idea so he did some research and talked to several researchers.

Dr. Baumgartner came across previous research done in Italy which showed successful results using mice.  “The study used infant mice and exposed them to noise, antibiotics, or both– to create hearing loss,” he said.  “All of the mice were injected with human stem cells through the abdomen.  The damaged hair cells grew again—the nerves reconnected.  The cells from the human cord blood triggered the mice’s own hair cells to grow again.”

The FDA approved a license for the first human trials on ten patients, ages six months to eighteen months.  Children’s Memorial Hermann Hospital in Houston, Texas and Cord Blood Registry(r) (CBR) identified two babies to receive the treatment.  The first baby, whose hearing loss resulted from CMV exposure, received the first stem cell infusion on January 23, 2012.

I asked Dr. Baumgartner about the side effects from stem cell treatments and he assured me that the procedure had a strong safety record.   “Safety is our goal.  People  are often scared of stem cell research—they freak out,” he explained.  “Autologous blood, giving people back their own blood products, is safe.”

Once the trial shows results with at least five infants, the team can request FDA approval for the second phase which will allow an increase dosage of stem cells.  The third phase would include double-blind random trials.   “I feel my hypothesis is strong and I’m hopeful we will get good results,” said Dr. Baumgartner.

In a discussion with a friend, she revealed that she was scared about the potential success of the stem cell trials.  “It scares me to think that we would lose the beauty of deaf and hard of hearing people in the world.  The world would be so bland without that diversity,” she said.  “Think of how the world would be without the contributions of Beethoven… or Edison… or Vint Cerf—the father of the internet.  They are all deaf and hard of hearing and they contributed something valuable to the world.”

My own feelings were very mixed on this.  I spent the last twenty six years getting really comfortable with myself after going from hard of hearing to deaf.  In sharp contrast to the teen who hid every sign of hearing loss, the teen who became deaf at nineteen learned to embrace a whole new world that included American Sign Language.  My world truly opened up after becoming deaf and I saw the change as a blessing.  I learned to embrace the gift I was given.

I asked Dr. Baumgartner about research on families like mine—five generations due to a mitochondrial gene. My daughter will pass this gene on to her children.  He explained that bone marrow trials may be promising.  “Your own bone marrow won’t work. If you use a different person’s blood, one without the genetic cause, another person’s bone marrow would allow the organ of corti to repair itself,” he said.

Talking to Dr. Baumgartner on the phone using an interpreter and learning about the possibility of growing new hair cells—like I said, this brought on mixed feelings. On one hand, there was the excitement at the possibility of progress, of being able to restore hearing.  I thought of my siblings—I know each and every one of them would jump at the chance of being able to hear again.

I asked my daughter how she felt.  “I want deaf kids,” she said. “It makes me kind of sad to think of the world without deaf and hard of hearing people in it.”

Yes, deep inside of me, there was a bit of sadness.  I believe the world is a more vibrant, colorful place with the tapestry of deaf and hard of hearing people who have crossed my path over the years.  I cannot imagine a world without them.

Karen Putz is a mom of three deaf and hard of hearing teens.  She blogs at www.deafmomworld.com and www.deafhhcareer.com.

Families who are interested in participating in the clinical trial can obtain more information at:
http://www.cordblood.com/hearingloss