Teaching Deaf and Hard of Hearing Kids to Read

By Karen Putz, Co-Director of Deaf and Hard of Hearing Infusion

I grew up hard of hearing. The library was my favorite place and I often spent Saturday mornings picking up books for the week. I immersed myself in reading for hours and hours. For me, the written word was the key to the universe because the audio world simply wasn’t accessible. When I became a mom of three deaf and hard of hearing kids (who are now young adults) I was determined to give them the same keys to the universe. My children were all born with normal hearing and became deaf/hard of hearing at two, four, and two years of age. When they were born, I introduced them to board books before they could even sit up. I had books everywhere in the house–and always kept a box of books in the car. Today, all three of them enjoy reading, although they all took different paths to learn to read.

Here are some creative ways I’ve used to teach my children to read:

Make Reading FUN

The key to teaching reading to any child is to make it FUN! Learning to read doesn’t have to be a dreaded process for you or your child. Start early. Your infant can begin to enjoy picture books as early as six weeks–which is about when their vision sharpens. Keep in mind, books need to be held no more than ten inches away during the first three months.

As soon as each of my babies were a few weeks old, I brought out picture books with simple objects and just one to a page. Before my kids could even sit up, they would become excited at seeing the same books over and over. Often, my husband and I would team up to read, with one of us holding the kid and the other reading and signing. When our kids were a bit older, one of us would read out loud while the other held the book and followed along pointing at each word. We often alternated our methods in a variety of ways depending on each child’s development and skill.

Not only did we strive to develop their language skills, we worked on auditory skills with whatever auditory ability they had. Even kids with profound losses can appreciate books that focus on sound–using drums, vibrations, visual lights flashing, etc. Be as creative as you can in showing your child the visual and auditory world around you.

The Bathtub Reading Center

 

One of the best places to teach reading is in the tub. This is the perfect place to keep your child in one place for a while and have some fun learning to read. Of course, you’ll need to keep the books OUT of the water.  Occasionally I would also bring in treats like ice cream bars or popsicles (you can make healthy ones!) –this would keep my child occupied long enough to sit in one spot and watch me as I read from a book.

The best reading tool is a set of foam letters. Yes, that’s right. A cheap set of foam letters. I taught all three of my kids to read during bath time. Start by teaching them to recognize each letter. Once they know the alphabet, play “Hunt for the Letter” by placing two of them in the tub. “Where’s the A?” “Where’s the P?” You can gradually increase the number of letters floating around until you have the entire alphabet in the tub. You can use cueing, fingerspelling, or flashcards to show the letters you’re looking for. Have your child put each letter up on the bathroom wall as they find them. (If your child has a waterproof hearing device, they can keep it on during the play session–check with your audiologist to confirm).

The next step is to start spelling out short words. Cat. Dog. Mom. Dad. Pig. And so on. I had a whole collection of plastic animals that we used in the tub–I would put the word up on the wall and my kid would have to find the corresponding animal.

Here’s a way to vary the activity and encourage kids to think. Put up the word “Cat.” Then hold up an “M” and a “H.” Now ask your child, “Which letter would turn this word into “Hat?” If your child has some difficulty, then use visual cues, props, flashcards, cueing, or fingerspelling. Do this with a variety of easy words.

Around the House

Grab a 100-pack of index cards and a marker. Label things around the house and stick the cards to each item. Once your child has mastered the words, substitute the cards with more complex words or similar words. This works great for families with multiple languages. Yes, deaf and hard of hearing kids can learn more than one language. The key is to provide access in a way that the child can comprehend, process, and understand language.

Once your child has basic recognition of words on the index cards, you can put them in a pile and play, “Find the Word.” Then expand it to, “Create a Sentence.” For more advanced word, ask your child to pick up five index cards and “Create a Story” with the words. The stories can be as silly as possible!

Choose different areas of the house to read books. Spread a blanket outside and have a picnic while you read.

Use Books with Pictures for Words

One of my kids’ favorite books was “Picky Nicky.” This book was a bit more advanced for the beginner reader, but the beauty of this book was each sentence had one or two pictures in place of words.  I would read/sign the words and pause at the pictures. This gave my child the opportunity to fill in the word by looking at the picture. It was a great way to involve them in reading longer books and allowing them to participate in the reading. My kids also loved “The Very Hungry Caterpillar” because of the different-sized pages. For fun with pre-schoolers, you can purchase all the foods in the book and have a feast as you read!

Cooking + Reading

If you have a kid who won’t sit still long enough to get through a book, another way to teach reading is through cooking. Yup, that’s right, cooking! Use the back of a brownie or cake mix to teach reading. Most box mixes have pictures as well–showing eggs, a measuring cup, etc. Ask questions like:

“Can you find the word, ‘Pan?’”

“What temperature should I turn the oven on?”

“How many minutes do we need to bake the muffins?”

“Do we need one or two eggs?”

Let your child scan the box to find the answers.

Create simple recipes for foods that your family eats often and read the recipes together as you prepare the food. This skill goes a long way in life!

On the Road

One of the first signs my kids learned to read was the “stop” sign. “Oh look, there’s the stop sign,” you say as you come to a stop. “S. T. O. P. Yup, that means stop. So I’ll need to stop here.” Yes, that sounds cheesy when you say it, but hey, you’re teaching your kid to read everything, everywhere you go.

As they become older, you ask for their help in finding certain exits. “I need to watch for the exit for Lawrence,” you say. “Can you help me find the exit that begins with the letter, L?” Do this within a mile or two at first. For more fun, start out on a trip with a list of words to find and cross them off as you pass them by.

Play the License Plate Game on long trips. You can print out the license plates of all the states here: License Plate Printable.

Other Reading Tips:

When your child begins to learn to read and knows a few words from a favorite book, read along by pointing to each word/sentence (as you speak/sign/cue) and then stopping in puzzlement at a word that your child knows. Give them a chance to recognize and read the word–kids love to help adults and share what they know! When your child has a comprehensive understanding of a book, you can also have some fun by misreading a word and waiting to see if your child catches your mistake. This is also a way to test your child’s understanding and comprehension.

Another fun reading activity: alternate sentences when reading familiar books. You read one sentence, your kid reads the next one.

Everywhere you go, with everything you do, find and create opportunities to expand your child’s language and their exposure to the written word. One of our favorite toys was the Magnadoodle–I would introduce a new word and draw a picture for the word. This was great during the times we had to wait in doctor’s offices. At the beach, we would write words in the sand.

Pick books that fit your child’s language development at the time then alternate with a book that’s a bit above their language level. If you notice your child has a passion for a certain sport or activity, select books around those topics. My youngest child hated to read books but he was content to sit through a football book–he knew every NFL team by the time he was four. Don’t be afraid to read books that are above your child’s reading level. The more words you expose your child to, the better!

You can even find books with deaf/hard of hearing characters: Wikipedia List of Books with Deaf and Hard of Hearing Characters

Here are some resources for teaching your child to read:

Clerc Center Literacy

Hands & Voices Literacy Resources and Research

Instructional Strategies for Students Who are Deaf or Hard of Hearing

 

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Ashlei Powell: Creating Deaf Wearables

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

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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Kris Martin: A Passion for Racing

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Not Afraid (Excerpt from Kris Martin’s website)

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

Being born profoundly deaf. Not a problem.

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

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

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

From Kris:

Racing Family

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

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

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Go- Karting

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

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

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

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

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Race Car

My dream has always been to race Stock Car!

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

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

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

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Public Speaking

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

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Believe Yourself

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

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

 
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The Cornerstone of Parent Choice

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

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

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

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

Moms of Hands and Voices

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

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

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

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

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

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

Thank you Hands & Voices for bringing me home.

 

Rana Ottallah

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Jordan Livingston: Becoming a Pilot

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

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

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

 

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

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

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Clare Patterson: There is Beauty in Everything

clare patterson HV story

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

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

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

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

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

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

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

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

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

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

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

clare patterson HV story 2

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Clare Patterson

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

joshua and julie

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

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

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

#thedeafmentor #ledbetter #believeinyourself


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

Joshua D. Ledbetter

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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