Posts Tagged ‘Hard of Hearing’

Jessica Flores: Being Deaf is a Laughing Matter

July 5, 2018


 

 

Jessica Flores is on a mission: to make others laugh while she’s in the middle of her own journey of discovering her deaf self.  In a video that went viral on Now This, Breaking Deaf Taboos, Jessica shared some insight that started her on the path to becoming more comfortable being deaf:

So for a long time, I always felt really alone and isolated. I’m not gonna get into my whole life journey, but it was hard. And it was not an easy road to go down. It took me years to realize that I was not the only deaf person facing all these communication barriers and challenges every day. I seriously figured all this out like three years ago. Once I realized this, I wanted to do something about it.

Karen Putz and Jessica share a few laughs as Jessica tells more of the story of her journey:

 

 

Jessica’s popular videos:

Most Googled About Deaf People:
Can Deaf People Drive?:
What You Should Know About Hearing Aids:
What You Should Know About Captions:
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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.
 
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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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Clare Patterson: There is Beauty in Everything

March 6, 2018

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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.

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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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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.

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

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Julia Resciniti: Surfing in Silence

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!

CatchingWaves

“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.

PaddlingOut

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.

FrontCoverMagicEarKids

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My Ear: New Speech to Text App

November 30, 2017

brandon and gerald

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. 

my ear app

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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Janel Frost: Reflections on Communication Access at Family Gatherings

October 18, 2017

Janel & Mason for Holley

What follows is my own reaction to Dianne’s post as a parent of a child:

This is my son. It pains me as a mom to watch my son go through feeling so left out at family get togethers, however, I don’t know what more to do for him. I’ve encouraged many family members to try harder to learn a language that could help him feel more included all the while realizing that they may use this new language one or two times a year. My husband and I have both taken turns to interpret when needed, but it’s not the same as direct access to communication–and who wants your mom a part of the nerf gun fight with all the cousins?

So I take delight in the fact that there is a place where my son can go to feel connected and a full participant–with others who use American Sign Language. We encourage and take part in his comfortable, communication accessible world as much as possible to let him know he is not alone. It is in that deaf community that we understand how he feels in the hearing world, and we don’t mind one bit.

This is my son’s reaction to my post:

Wow, mom. Yes this is exactly how I feel. I love my cousins, aunts, uncles and my grandparents, but when we have get togethers, it really is hard for me. I want to join in but get lost in almost every conversation and I just don’t want to bother anyone and ask to repeat for the third time. Uncle Greg and I will go out on the porch or in the basement just to find someplace quiet so that we can talk one on one. I like that he does that for me. It does sadden me sometimes that all my family members don’t know how to sign. I am glad I have the deaf community. I enjoy being able to talk for hours without having to stop to repeat. It just feels so free.

Janel Frost
Director/ASTra Coordinator
Michigan Hands & Voices
(248)845-8762
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Jessica Stern: JUST GOOGLE IT

August 28, 2017

“Information helps you to see that you’re not alone. That there’s somebody in Mississippi and somebody in Tokyo who all have wept, who’ve all longed and lost, who’ve all been happy. So the library helps you to see, not only that you are not alone but that you’re not really any different from everyone else.” -Maya Angelo

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In the 90’s, there was no Google website to go to when you wanted to search for tips on teaching your deaf child how to speak. There was no online forum where you could talk with other parents in your shoes in order to find out what worked for them. There was no app on your phone to help teach you ASL. Parents were left to their own resources and gut instincts, they were left with vague recommendations from their audiologists, and they were left with hand scribbled landline phone numbers of someone that had a deaf child.

My parents were in those shoes of not knowing what laid ahead for them. They had just been told that their 15 month old baby daughter was profoundly deaf in both ears as a result of Meningtis. They lived in rural Minnesota in a town of 1,200 people. The only deaf people in town were 80 years old or more. My parents desperately needed a family to empathize with and to relate with the issues they were going through.

The moment that gave them hope was getting a phone number for a couple in the Pilot Parent program. Dennis and Deb were the parents of a girl who also had Meningitis as a baby, and had been deaf for about 5 years. This family was the Morrows and they were our saving grace. Over the next decade, our moms became very close and learned to rely on each other. There were many phone calls to ask:

“Is this right?”

“Is this normal?”

“Tell me I am not ruining my baby…”

With everything they shared, the most important thing Deb told my mom was, “You will meet a lot of experts that will tell you what to do, but remember, the most important expert in her life will be you.” We were one of the lucky families, not everyone was able to find this type of guidance.

CHALLENGES BEYOND THE FRIENDSHIP

No matter the motherly advice my mom received from this family, there was always still a lack of professional advice based on real life cases. One of her biggest struggles was that she was not sure what accommodations the school system was legally required to offer. In an effort to know more, she joined a state board in order to surround herself with others who knew more.

With this support system, she was able to understand so much more when it came to IEP’s and services. In fact, with the expertise of other board members, I was the first D/HH child in Minnesota to have the public school system help financially with an interpreter within a private school. I did not stay long at the parochial school but it was something that my mom’s hard work and research helped make happen.

A significant lesson that my parents learned right off the bat was that you can and should try every tool out there. Each person is different and each person will benefit differently. Instead of looking at different routes as successes and failures, they looked at them as crossing out the items that didn’t work and keeping the items that did. There were many things that worked for us, and even more things that didn’t.

“YOU WANT THREE QUESADILLA MEALS!?”

We had a rule they made when we went out to eat because dining out was a chance for my parents to teach me how to be assertive. This story often makes my parents seem like they did not care, but it is the opposite… They cared so much that they struggled to watch me go through the situation of dining out. They started me with this practice at a very young age.

When it was time to order, whether it was McDonalds or Perkins, I was left to fend for myself and it would be a conversation between the waitress and me. If questions were asked by them, I had the chance to smile and nod or I had the chance to ask them to repeat themselves.

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For many years, my dad did not order a meal for himself because they knew with certainty that I would not get the food I ordered and he could eat my food. In fact, when I was 16, I accidentally ordered three quesadilla meals instead of three quesadillas. That was a $48 mistake…

As a child, I was the picky eater who would order a cheeseburger with no mustard, no onions, and no pickles. After smiling and nodding at the clerk, my order would come with extra onions, extra mustard, and pickles. My mom would just hand me more money and send me off for a second chance.

For years it seemed like I would not learn, but slowly and surely I began to ask the waitresses to repeat their questions, I would tell the cashier that I was deaf, and I would repeat my order back if needed. Now, as a 30 year old woman, I am confident going through a drive through and telling them I will see them at the window to give them my order.

“I’M A BARBIE GIRL, IN A BARBIE WORLD”

Music was one of those things that we struggled with trying to figure out. When a kid with hearing aids wants to learn lyrics to a song today, it’s easy to go to MetroLyrics or Lyrics.com. A song can be played on repeat until the feeling of the beats becomes natural and the words become second nature.

I grew up in the days where radio was the source of music and songs could not be played on repeat on iTunes or YouTube. There was no way to look up lyrics beyond learning them from sound.

In true family love fashion, my parents and sisters came together to make music work for me. My older sister, Dani, would sit in the car and record the radio to a cassette drive. Then, my mom and dad would listen to the cassette and write down the lyrics on a sheet of paper. They would have to listen very carefully, mulitple times, in order to make sure they were on track with the words. To this day, my mom always laughs and says that no grown man should know the words to “Barbie Girl” by Aqua.

There are going to be challenges and there are going to be solutions. The solution might not be ideal, but there is almost always a way around it.

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THE FUTURE IS BRIGHT

If there is any advice I have for parents, it would be that the future is bright. There are so many opportunities out there for support and resources. I would be confident saying that my parents would be jealous of the options out there today as you begin this journey with your D/HH child.

Take advantage of everything you can get your hands on. Go to the family camps, try out the different technology options, follow blogs of those who have gone through this already, and never set limitations for yourself or your child. And if all else fails, at least you have Google, Siri, and Alexa to ask for help.

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