Posts Tagged ‘Deaf’

Scott Smith: D/HH Plus, Just a Little Bit

August 23, 2018

(By the way, this isn’t an article about how to get your child into a deaf university or any university. It’s about a moment as a parent when you consider the future – the unknown – and your course changes a little bit. A little bit for the better.)

By Scott Smith, Nebraska H&V

My wife or I have been on the Nebraska Chapter’s Board for a few years now. Back in 2016, we decided to go to the Leadership Conference in Estes Park, Colorado. We networked with people from all over the Midwest and from all over the country: parents, deaf adults, medical professionals, and teaching professionals. It was great. They covered all manner of topics from technical updates, to building stronger Chapters, to legislative highlights, to restorative self-care classes, and yes, there were some touching moments that pulled a few tears.

Let me stop a moment and say, if you are reading this, you are likely a member or are supporting Hands & Voices. (Soapbox: On) Consider becoming involved with your local board of directors. These are usually a bunch of cool parents, cool professionals and cool deaf adults that want to help other parents of deaf and hard of hearing children in some of the unique challenges we face from day to day. Someday you will have the opportunity to go to an amazing event like the Leadership Conference. It will have a positive affect on you as a parent. (Soapbox: off).

Disclaimer: I am not cool.

We started this journey when our son was born hard-of-hearing in 2007. Due to trauma during his birth, some of his fine motor skills in his legs, arms, including his finger and hand muscles and some of those in his lips and tongue are affected. Like all of our children, Charlie is a blessing and has changed our lives in wonderful ways. But for Charlie, and even for our other three children, we don’t know what the future holds.

During one of the breaks at the conference I walked through a hall of exhibitors on my way to the snack table. “What is that?” There was a booth for Gallaudet University and the National Technical Institute for the Deaf at the Rochester Institute for Technology was also there. After a few minutes talking to the representatives, I got to thinking about college. I had never thought about college for Charlie. Well, let’s just say we hadn’t spent a ton of time thinking that far ahead. (By the way, this isn’t an article about how to get your child into a deaf university or any university. It’s about a moment as a parent when you consider the future–the unknown–and your course changes a little bit. A little bit for the better.)

Like I said earlier, we don’t know what the future holds for our kids. I’ll be honest; I was more worried about Charlie graduating from high school. On the way home from the conference, I was really in my head. “What can I do? What more can I do?” My wife and I work full time, which sometimes require travel and extra hours. We also have three other children. I am blessed to work for an employer that gave me the opportunity to go from a 40-hour work week to a 32-hour work week. First off, shaving 20% off the family budget was difficult. But it gave me the time to become more familiar with Charlie’s school friends, school staff and curriculum.

A friend was teaching a chess club for third through sixth-graders at Charlie’s school, and asked if I could assist. I know more about Gallaudet than I do about chess, which means “not much”. I said, “Sure. Can Charlie join?” He said yes, and two weeks later, I was helping teach chess and chess-related signs once a week to students in the club. In the spring of 2018, Charlie played in a school chess tournament and had a 2-1-1 record and did pretty well. He wants to play again this year. That probably wouldn’t have happened if we hadn’t thought about working toward college and taking the leap to lower my work hours.

Next year, Charlie transitions from elementary to middle school. Our department of education closed our Nebraska School for the Deaf many years ago. We are faced with various blends of mainstreaming through middle and high school. As parents, we do not feel Charlie will have much success with this approach. So our next big adventure may be obtaining residency in a state that has a school for the deaf. Maybe in six years, I’ll write an article on how to get your Deaf Plus child into college. In the meantime, I look forward to the moments that will change the course of my family’s life a little bit, just like the Leadership Conference did for me. Those moments opened a multitude of doors that have provided experiences for Charlie and me that we never would have had…experiences that make the unknowns ahead less daunting.

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Rosabel Agbayani: The Road We Travel TOGETHER

August 15, 2018

The road we travel TOGETHER: Our Family Journey

By Rosabel O. Agbayani, MPH

“If you want to change the world, go home and love your family.” -Mother Theresa

Sometimes we think that in order to make change we have to make a lot of noise. What I have learned from my experience of raising my children, and especially raising my deaf child, is that you have to be able to drown out the noise and listen to your heart.

We found out my son was deaf in September 2010. I’m not sure why I was so shocked because after almost six months of testing we finally had an answer. But I still remember that feeling when I heard the words “Your son has a hearing loss.” My heart sank, tears fell, and this overwhelming feeling of shock took over. The Audiologist had many well-meaning things to say. But I felt like I was in the scene of a Charlie Brown cartoon when the adults talking sound like jibberish. All I could focus on was “What was my son’s life going to be like?” “What is our family’s life going to be like?”

We came home from that appointment and I felt defeated. But with a six-month old infant, a teenager, and now a Deaf child, I had no time to feel sorry for myself. So I spent most of my time on the internet looking to find every answer to calm the worries in my head. We asked for second opinions, I went through parent training modules, but there was no place in the internet that reassured me that everything was going to be okay.

Reaching out to family had challenges of its own. Those closest to me felt pity for our circumstance. Pity was not going to help me, so I found myself getting angry with them and frustrated having to explain what I was trying to do for my child.

To further complicate the issue, in my culture and within the community of family, disabilities is not something to be discussed. Filipinos have a tendency not to share, for fear that if others realize our weakness then we, ourselves are perceived as weak and therefore bring shame to a family. So even in my own family I felt lost and out of place.

In fact, we lost a lot of friends and family along the way. Well-meaning individuals who would minimalize his hearing loss, or say things like “Well just get a set of Rosetta Stone and he will learn language like normal.” One of the most hurtful things I witnessed was at a family party when my nephews were playing a game of “Can you hear me now?” They would walk around my son asking him if he could hear them. Because my son is the playful type, he innocently went along with the game while they laughed at his expense. It was then that I realized the true meaning of “You must learn to walk away from the things that no longer serve you.” It was a painful but necessary lesson. Their noise was clouding my vision.

 

The first time I ever felt “normal” again was in February of 2011. We had just fought and won our first battle to get our son into the only non-public oral deaf school in our area (a story I will leave for rainy day). I remember clearly his first day, walking through the gates of Oralingua School for the Deaf in San Marcos, California. We were all welcomed and greeted by mothers who were so excited to see another child admitted to the program. There were only six children at the time and my son made the 7th student at the school.

I finally felt at home with our new community. When our kids were busy learning, the parents (we proudly referred to ourselves as the “Parking Lot Moms”) would gather at the local coffee shop and share our stories, retell how our children were diagnosed, explain how they got to the school, and their journey. With each story I heard, my heart felt at ease. Finally, I met another parent who understood me. I didn’t have to speak but just listen. Every word healed my soul. Till this day, these mothers are like my sisters and our children are like siblings from another mother.

I realized early on how important it was to have this kind of network when you are going through something unique and unfamiliar to you. Parents can benefit when we learn from each other. When we can listen and share the choices we have made with each other. We learn to open our minds to new ways that we can help shape our children’s future.

At the time when my son was diagnosed, I only knew three people who were Deaf. My Uncle (my mother’s youngest brother) who had been deaf since he was an infant, an Uncle who was late deafened as an adult, and a friend I met later in life. I asked so many questions at the time. I wanted to know what their lives were like, what challenges they had to overcome and how they got to be who they were today. Deaf adults have a significant role in our understanding as parents. I learned that they have something I cannot give to my child, an insight to the Deaf experience that was critical for my own understanding.

I especially remember talking to my friend and asking her about her hearing aids and school. I was so focused on the technical aspects and she kindly responded to all of my questions. She shared about her experiences growing up in the United States when her parents found out she was deaf. Her mother sacrificed everything she had, left her husband and their life in the Philippines, and brought her and her sister to the United States so she could have a better life. John Tracy Clinic had an international program at the time and she had the opportunity attend the school. It was then that I started to think that maybe our problems were not necessarily about my son’s hearing (I can never change that), but about giving our deaf child opportunities so that he can be the person he is meant to be.

As a parent of a child with special needs, you go through many cycles of joy, pain, confusion, and brief moments of clarity. Some days you just lose it, it comes with the territory. It doesn’t have to be anything significant that happens but some days are just tough.

I remember one day, it was just like most days. I was carrying my twelve-month old in my arms, dropped off my eldest at high school, and went to the hospital for one of my son’s many appointments. I must have been very exhausted because after one of my son’s back to back appointments I just sat in my car and cried. The emotions I held in my heart just suddenly overwhelmed me. Beaten and broken, I wanted my faith to show me a sign, anything to help me understand why life had to be so hard. I was never angry that my son was deaf but I was frustrated because I didn’t know if what I was doing was ever going to be enough.

Suddenly, my three year old deaf son (who had just learned how to put 2-3 word utterances together) looked at me, wiped the tears from my eyes, and said “Mom, why cry?” His sentiments made me smile. I just gave him a big hug. It was what I needed at just the right time. From that moment on I realized, there was NOTHING wrong with him. He didn’t know any differently that he was different. My answer was there beside me, telling me that I was doing EVERYTHING right. In his beautiful world he didn’t know he was “deaf”. All he cared about was that I loved him. I was the one who was broken and HE was the one who fixed me!

Sometimes we get so focused on taking care of others needs that we fail to tend to our own needs! Our kids need us to take care of ourselves! It is as much a priority as our responsibilities as a parent! When you are on a plane they instruct you to put your own oxygen mask first before you do it for your child. I needed my air so I could breathe and think clearly. Then I could refocus and care for the needs of all of my children.

When I finally stopped feeling sorry for myself, I got myself together, and started focusing on my own needs. It had been six months since I got a haircut and it was one of the first things I did for myself. I forgot how good it felt to feel “normal”. Little by little our lives transformed and we found our “New Norm”. I made it to the gym, spent time with friends, and enjoyed my family time.

It was important for my husband and I to spend time together finding moments of joy with each other, despite the hardships we were experiencing. We squeezed in date nights when we could, even if it meant driving in the car till “The Littles” fell asleep to have ice cream cones together. It’s those sweet moments that I cherish the most.

My husband is a hard worker. He worked full-time to support the family while I was busy managing our family business, taking care of the kids, and driving to appointments. When I needed rest or a moment of sanity he gladly stepped in and did his daddy duties with pride. We spent a lot of time talking to each other as a family, having conversations about everything. We love to travel and we learned from our experiences together.

We knew that if we were going to help our son communicate with the world we needed to learn how to communicate as a family. Because when you have a deaf child, you become a deaf family. As with most families, the diagnosis of having a deaf child changes your life and the dynamics of a family. This was not our weakness, it only made us stronger.

My son’s diagnosis changed me too! I have always been a bookworm and self-proclaimed nerd. So when life settled to a comfortable pace, I went back to school and started online classes to earn a second bachelor’s degree in Communicative Disorders and Deaf Education at Utah State University. I graduated on the Dean’s List in 2013. I always felt lucky that I had the kind of training that most of my fellow classmates didn’t have. Regardless of my degree, I was a parent first. I used my new found knowledge and taught my son how to read and write. I learned to communicate with him and create opportunities for him to learn how to communicate with others. It was exciting to use the tools I learned and see my son’s progress. I was fortunate to have on the job training! This knowledge helped me create better relationships with his educators. I knew that if he was going to meet his goals, as a part of his IEP team, we needed to work together.

When my son was mainstreamed in our home school I decided to take a job as an aide in a Special Education classroom. I worked my way up to becoming a Behavior Intervention Instructional Assistant working with kids on the Autism Spectrum. I also volunteered at the local Children’s Hospital working with kids who were Deaf and Hard of Hearing. I also volunteered briefly for an Audiology office observing Aural Habilitation techniques used for kids with Hearing aids and Cochlear Implants.

My work experiences helped me have a different perspective compared to working with my own child. It helped me understand that professionals have a responsibility to heal, to habilitate, and to provide a service that meets a specific need for our child. But that does not take away from the real learning that comes from home. As a parent, our job is to meet professionals and educators half way. They hold the piece of the puzzle that we need to understand our own journey. It’s our job as parents to put the pieces together in a way that fits best for our family.

As a parent and a “wannabe” professional, I met Auditory Verbal Therapists, ENTs, Speech Pathologists, Occupational Therapists, Reading Specialists, and Deaf Educators and Specialists along the way who gave me different tools to use. I like to think of these moments like a trip to the “Special Needs Home Depot”, you can fill your toolbox with many tools and use it if (and when) the time is right. I filled my head with a lot of information, gave myself the opportunity to fill my toolbox as much as I could. I didn’t want to miss the opportunity of having something fit just right for my family or for the children that I worked with. My advice for new families is to always keep that toolbox open and learn as much as you can! Together with your child you can figure out what works best!

In 2015, I got my first job working on a research project studying outcomes of Deaf and Hard of Hearing Children with Cochlear Implants. Having a better understanding of the CI candidacy process and collecting data from educators helped me understand the many different factors that can influence a child’s ability to succeed academically as well as communicate effectively. The bottom line (as a parent by this time I was NOT surprised) family involvement in their child’s education has a positive correlation to overall success.

Because I was no longer just on the receiving end of services, I gained a newfound appreciation of the fact that we all have different perspectives, but our hearts are in the same place. Professionals, even those who think differently, expect different outcomes, or provide a viewpoint different from ours also want the best for our children. We are more alike than we are different. I often think to myself, “Imagine how much we can accomplish as a group if we focus on the sameness and not differences.” Our children need us to work together.

Togetherness is a concept that speaks to the core of what it was like for me parenting a child who is DHH. It is a re-occuring theme in my life, in our journey as a family, and now for me as a professional. When everything was falling apart, I struggled to keep my heart, my family, and my community together. Some days were better than others and progress was not always perfect or prompt. What gave me hope when times were tough was realizing that along the road, I walked the journey with people (my son, my family, DHH parents, and everyone else that crossed my path) who reminded me that I was not alone.

It seems like a lifetime ago when my son was diagnosed. My son is now 11 years old, entering his last elementary school year in the 5th Grade. He has friends (both hearing and DHH), plays baseball (his favorite positions are 3rd base and catcher), loves Hip-Hop music, and annoying his two siblings. My eldest daughter, a senior at CSUN in the Music Therapy Program and President of the Music Therapy Student Association, hopes to pursue a career helping others with specials needs. My youngest daughter (who is now eight years old and grew up alongside our beautiful journey) has won awards at school for good character, recognized for being kind and having compassion for her fellow students. My husband and I can only look back and think about how far we have come. Married for 10 years and after everything we have been through, we live the truth of that “which does not kill you will only make your stronger”! Our lives have never been without struggle, but we wouldn’t change a thing.

Currently, I work as a Pediatric Clinical Research Coordinator for Rady Children’s Hospital in San Diego, I serve as PTA President for my children’s school and on the Community Advisory Committee for Poway Unified School District. Most importantly, I remain committed to my role working with California Hands & Voices helping to build bridges between parents, professionals, educators, and others in the DHH Community.

Together we grow. While my son was learning how to speak, learn, read, write, communicate; I was learning too! When he struggled, I learned how to help him succeed. While his knowledge of the world around him grew into his identity, his identity defined who I am today. His deafness helped me learn how to listen to my heart and my heart allowed me to follow my passion.

Healing begins when you can find purpose in your pain. What started off as a desperate mom looking for answers has led me on a path where I have combined my real life experiences as a DHH mom with the knowledge of as a Professional. Because of this, I feel a responsibility to share my unique insight with others. Everyone has an important role to play. As Parents, Deaf Children, Deaf Adults, Medical Professionals, Educators, Researchers, and Advocates we all have the power to create a community for DHH Children and their families…TOGETHER.

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Ashlei Powell: Creating Deaf Wearables

May 29, 2018

My name is Ashlei Powell and I have bilateral cochlear implants. I became deaf at eleven months from meningitis and received my first implant, on my second birthday, in 1990. I was the youngest recipient in the USA (just after FDA approved the cochlear implant for children) and the first youngest, in the world at the time, to receive a cochlear implant.


After receiving my first implant, I attended speech therapy for several years to learn how to listen and speak. Growing up, I had the opportunity to speak about my hearing experiences at auctions, in news interviews, and even with the first deaf Miss America, Heather Whitestone. After fifteen years of wearing just one cochlear implant on my right side, I felt like I was missing a puzzle piece. In 2005, I received my second implant and it was indeed, the missing puzzle piece for me.


I attended Pensacola Christian College in Florida for three years, before coming back home to marry my college sweetheart, Joe. We are proud parents of two dogs and a spunky and sweet two-year-old boy, Jackson.

My life has had a few challenges, but has been incredible and full of blessings. As being a Cochlear Implant recipient, I had to find ways to help me listen in life and in school that would work best for me. I made it work and accomplished a lot. I love being a bilateral recipient and I enjoy sharing my story to help others who are considering cochlear implants.

I have always wanted to be a nurse, but it wasn’t what the Lord wanted for me, so I tried a few classes in the medical field to see where the Lord wanted me to go. I’m now currently working as a phlebotomist at a hospital, running my own Deaf Wearables business, and also being a mommy and a wife.

In summer of 2017, I participated in a physically challenging obstacle course at Copper Mountain.  I looked everywhere online for outer wear that showed I couldn’t hear…..something I could attach or could wear on my clothes, arm or headband that said the word, “deaf”. There was not one single thing out there and I thought it was so frustrating and not fair to the deaf community.
I recently started producing of all kinds of Deaf Wearables for all ages, that can be used in all kinds of activities such as skiing, marathons, hikes, walks, etc., even daily life.  The reason why I have a line going through the ear is because it’s very simple and produces a quick understanding, like the universal symbol, to let people know the person can’t hear.  I wanted to present this collection of wearables in a fun and inviting way. I know how hard it is to do everyday activities without people being aware of someone’s deafness. My products contain: reflective vests, shirts, neon headbands, key chains, bags, stickers, etc. that have the word, “deaf” on it. My goal is to produce deaf wearables that people would be excited and proud to let others know that they’re deaf–all while being fashionably current.

 

For more information on Deaf Wearables:

www.deafwearables.com 

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Autism or Hearing Difference? Tweezing out the Differences

May 4, 2018

By: Kristi Riley

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One of the big questions researchers have in the D/HH and autism world is, how do you tell the difference between hearing loss symptoms and autism symptoms? As a mom of a child with a severe hearing difference and a child with both mild autism and a mild hearing difference, I have gotten to see first hand what some of these differences may look like. I am in the process of earning my doctorate degree in clinical audiology at the University of Wisconsin-Madison. I am also a family trainee in the Wisconsin LEND Program (Leadership Education in Neurodevelopmental and Related Disabilities) at the Waisman Center, where I have learned about different developmental disabilities in children. I was recently trained through LEND on how to administer the ADOS. I have friends who are D/HH and friends who are on the autism spectrum. I can tell you for certainty that narrowing down the symptoms of hearing loss and the symptoms of autism is no walk in the park, and requires the subjective feedback from both parents who know the child best and the objective analysis of trained professionals.

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In 2012 when my daughter Lauralee was born, she failed her newborn hearing screening. Right away, we were whisked into bimonthly audiology appointments. Being music teachers at the time, my husband, Justin, and I were concerned not only about her ability to enjoy music, but her ability to gain access to language and literacy. If you can’t hear, you can’t speak. If you can’t speak, you can’t read. If you can’t read, then just about every subject that crosses your path is affected. (Who cares about aspirations of Julliard!) Learning to talk, read, then write affects every single subject in school. Lauralee was not officially diagnosed until 6 months old. She did not get her first pair of hearing aids until she was 11 months old. We were worried about her language development.

Lauralee has always been very alert and interactive. She has always made good eye contact and loved to play. She is goofy and is such a joy to be around. Even though she did gain the stereotypical “mama and dada” babble in the first few months, she mostly talked with her facial expressions. I decided to get the Signing Time DVDs, and she and I soaked-up sign language. It was like we had our own “secret language”. I always felt like we had a deep connection. Sometimes, I seriously questioned whether she was truly deaf or if it was all a big mistake!

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In 2014 (right after I started my path to audiology), we had our son, Oliver. He was such a beautiful baby and I was ecstatic to find out he passed his newborn hearing screening. Even though he had a short NICU stay after he was born, he ultimately seemed healthy in every way. When we brought him home, right away I noticed he was a little different from Lauralee. He was fussier and cried a lot. I chalked it up to being a different personality. Besides, I was a fussy kid too! I’ll never forget, at around 7 weeks, I was holding Oliver in my lap attempting to do face time. He would not look at me nor smile. He seemed so disconnected. I would force my face into his gaze until I got a reaction. But ultimately, I did not connect with him like Lauralee. I felt guilty.

When Oliver was about 3 or 4 months old I started subbing at a local daycare. Oliver stayed in the infant room while Lauralee was in the 2-year-old room. Lauralee was immediately the “favorite friend”. Kids would follow her around because she was so expressive and out-going. She caught-up academically and knew all her letters and sounds by the time she was 3. Oliver, on the other hand, was making minimal progress. He had little ticks like “twinkle hands” when he was curious, leg tensing and screaming when he was excited, and head shaking when he was bored. He did not learn to sit until he was over 10 months old.

When Oliver was around 12 months old, I contacted birth-to-3 about my concerns. He started receiving OT services right away. Weeks went by and Oliver did not learn to walk. He resisted every idea the therapist had. One night while crying my eyes out, my husband told me about this place called the Wisconsin Early Autism Project. I doubted autism because Oliver was gaining language and had okay eye contact but I went along with the idea just in case…

Two summers ago, I realized Oliver was saying “what?” a lot. Sometimes he would ignore me all together. He had not yet started autism therapy, and I wondered if it was his hearing. On a last ditch effort to prove it was NOT autism but something else, I asked my professor if we could test him. She agreed.

Testing day was a nightmare and an absolute embarrassment. Oliver screamed bloody murder in the sound booth and was ultimately untrainable. We waited six months and got a few frequencies. We waited another couple of months and got a few more frequencies- my professor is amazing! Ultimately, it looked like Oliver DID have a mild hearing loss in one ear (which newborn screenings do not catch). (YESSS!) We confirmed objectively through ABR over the summer. Even though he had a mild loss, my professor made the point that the loss would not affect his language development nor his behavior. The autism diagnosis stuck. (Darn.)

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I have finally come to terms with Oliver’s diagnosis. I don’t know why it took me so long. Maybe because there is a stigma about autism or a stigma about children with “poor behavior”. Lauralee made me feel like an amazing mom. Oliver challenges me every step of the way. Looking back, there’s no doubt Oliver has the right diagnosis. And to tell you the truth, he’s a good little boy.

Both autism disorder and hearing disorders are a spectrum. Every case is different. Someone could have the exact same audiogram as Lauralee but be affected more. There is so many intricate connections between the peripheral hearing system and the cortical synapses in the brain where hearing and cognition happen that something could go haywire at any point along the auditory pathway. Some one could have mild autism like Oliver but have a completely different set of abilities or behaviors affecting everyday life. Because of all these factors, it’s hard to truly come up with a set of “symptoms” that separate autism and hearing differences.

Maybe rather than separating the disabilities as two separate entities, maybe hearing loss is a symptom of autism. Autism on a basic level is caused by sensory wiring differences in the brain. There have been several studies showing the autistic auditory pathway is wired differently from the neuro-typical pathway. Perhaps hearing differences, whether peripheral or cortical, are a common symptom of autism. But the social insufficiencies that are commonly associated with autism do not translate to a person with deafness.

People who are deaf but given adequate language access through sign or otherwise, develop socially normal. Yes, a person may have to grab their attention differently but ultimately a deaf person is very socially aware. Autism can make a person seem “deaf” because they lack social cues like eye-contact and quick verbal responses. Neuro-typical people with deafness do not lack these social differences when given the chance to communicate. You can see it clearly in my children, but we are only one example on the entire spectrum.

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The Cornerstone of Parent Choice

April 2, 2018
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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Clare Patterson: There is Beauty in Everything

March 6, 2018

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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Ellie Parfitt: How I Became Known as the Deafie Blogger

February 1, 2018

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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

January 23, 2018

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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.

dad dying

 

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

December 29, 2017

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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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My Ear: New Speech to Text App

November 30, 2017

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A father and son team, Gerald and Brandon Isobe, teamed up to develop a new speech-to-text app called “My Ear.”

Gerald was born deaf and grew up in Hawaii. Day after day, he sat in class and had to lipread his teachers. He borrowed his classmates’ notes and studied what he could from books. In high school, Gerald was inducted into the Sports Hall of Honor for golf and graduated 299 out of 801 students. He went on to attend Rochester Institute of Technology to study accounting and became the first deaf person to graduate with a degree. He was inducted into the RIT Sports Hall of Fame.

“Lipreading is challenging,” Gerald said. “I often nodded along in conversation to keep the rapport with hearing people, even when I didn’t full understand what was being discussed.”

Gerald learned American Sign Language while at RIT.

Gerald’s son noticed his father’s frustrations communicating with others, especially when seeing his father communicate at stores or with new people. Brandon graduated from University of Rochester with a degree in Economics–and he used his iPhone knowledge to partner with Gerald to create My Ear, an iPhone app that users can download and immediately use to transcribe what hearing people are saying from voice-to-text in real time. 

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After trying the app, Gerald was amazed at how much he missed out on in daily conversations. “If I had this app growing up, I would’ve been able to build my vocabulary much faster.”

“As a deaf person, he didn’t realize how much conversation he was missing out on, because hearing people simplified their sentences to make it easier for him to lipread,” Brandon explained.

One of the big advantages of this app is the use of the iPhone ear buds as a microphone. The microphone can pick up voices from about 20 feet in distance.

The father/son duo recently released another app: “My Talk,” which provides text-to speech output.

New App for the Deaf Designed by Father Son Duo

My Ear on Facebook

 

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