Posts Tagged ‘Deaf’

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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Hands & Voices Leadership Conference 2017: Cultural Perspectives

October 10, 2017

HV Panel

Panel Session: Engaging Families and Leaders in a Diverse World

This year the Hands & Voices Leadership Conference brought cultural diversity to the table. A group of seven women, moms and clinicians whose cultural heritage represents many corners of the world, participated in a discussion panel.

Cultural diversity is a topic we need to discuss so we can better serve families from different cultural backgrounds. Culture is the integrated pattern of learned beliefs and behaviors (Nunez, 2006; Betancourt, 2003). It explains how we view and value the world. It is influenced by socioeconomic status, religion, sexual orientation, occupation, etc. (2006, 2003). Culture is the way we think, act, and interact with others. People from the same race do not necessarily share the same culture. As service providers, we should practice, grow and master our cultural competence skills. Cultural competence allows us to determine the social and cultural influences in a person’s health beliefs and behaviors. It is the ability to interact with people who are different than ourselves (Nunez, 2006, Dy, 2011).

In the following paragraphs, parent-guides/panel participants discuss key aspects to keep in mind when serving our Hands & Voices families:

Different cultures have different reactions to a diagnosis of hearing loss. Those reactions influence how and when we seek support. As parent-guides we can help families access support services sooner rather than later if we can connect with them and understand where they are in their own journey.

Our Connection: As parent-guides serving families from different cultures, we need to keep in mind that there is a common connection between us and the DHH families that we serve, and that the connection is the common diagnosis. This is an unbreakable bond that will open the door for us to serve and support those families. Language and translations: Language barriers also create challenges. Terms in English may not reflect the same meaning in different languages. Families need to understand exact terminology, be able to share the correct information, and exchange viewpoints about their child’s care to ensure a clear understanding of the decisions they make on behalf of their children. Are we connecting families with similar backgrounds so that they can feel a sense of familiarity especially at a time when everything is new and unknown?

Family preferences: We need to understand where each family is in their own journey. Find out about the families’ view of hearing loss, and support them accordingly. For instance, after the diagnosis some families are comfortable jumping in and starting an action plan. However, other families may need time to absorb, digest, and understand what their child’s diagnosis means to them and how they choose to approach the decisions they need to make regarding their child’s language acquisition, education, and even medical or professional treatment. It is important to provide a wide variety of opportunities for engagement. Small intimate gatherings are just as effective as big social events. Educational opportunities both virtual and real-time can bring important information. Resources should be accessible at a time that is convenient for families. We need to keep our hand on the pulse of the family when it comes to introducing new supports, like a deaf mentor, support group, family activities, etc.

Extended Families: Extended large families also play a role in many cultures and may impact how we support certain families. As members of Hands & Voices, we already know that it takes a village to raise a Deaf or Hard of Hearing Child. It is important to think about grandparents’ or other family members’ views on deafness or Hard of Hearing, and how we can include and involve them in our efforts to serve and educate their families.

Asking for help: Things may get difficult, and the tools that we have may not be sufficient for supporting some diverse families. At Hands & Voices, we have members from different cultural backgrounds. Reaching out to them may help parent-guides discover new resources or learn different options on how to better support a specific family. We should all keep in mind that asking for help and resources does not make us lesser advocates or guides, because all parent-guides face many challenges serving families from a different culture than theirs

We should pay close attention to each family’s dynamics and preferences, be aware of cultural influences, and offer our support accordingly. We are not alone. We all are constantly navigating others’ beliefs and behaviors. Finally, we should ask for help when in doubt, or if we think we are running short of resources. We are here to help each other help more families succeed.

 

Thank you to Rana Ottallah & Rosabel Agbayani parent-guides for their input in writing this summary. Thank you to all the panel participants for the content of this summary: Apryl Chauhan (CA), Yiesell Rayon (HQ,CA), Janet DesGeorges(HQ), Djenne-amal Morris (HQ), Rana Ottallah (LA), Rosabel Agbayani (CA), and Alejandra Ullauri (IL).

References:

Betancourt, J.R. (2003). Cross-Cultural Medical Education: Conceptual Approaches and Frameworks for Evaluation. Academic Medicine, 78(6), 560-569.

Dy, C.J., Nelson, C.L. (2011). Diversity, Cultural Competence, and Patient Trust. Clinical Orthop Related Research 469, 1878-1882.

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Tim Stones, Ultra Distance Runner

October 4, 2017

Seeing the Rainbows through the Storms

By Tim Stones

It is the South African Students’ provincial Athletics Championships, and I am standing with a group of students from all over the province, all eagerly awaiting the start of the Senior Mens’ 5000m Final. I can see that some of these athletes are excitedly engaging with their counterparts, verbally assessing who will be the one to look out for during the race. I stand aside. I am not wearing my hearing aids, and so cannot join in with their conversations.

We line up, waiting for the gun to go off, and the race to start. I stand slightly behind the others, watching their feet. Without my hearing aids, I cannot hear the gun clearly, and am not sure whether it is a gunshot or some other sound. The only way I can know for sure whether the race has started is by looking at my competitors’ feet. They start moving forward, and I know the race is on.

I run alongside a fellow athlete. I cannot hear the other athlete approach me from behind. The first I know that he is behind me is when he has passed me, and I now tag alongside this new athlete. And so we go, lap after lap until, eventually, I cross the finish-line. If I had not been counting the laps in my head, I would not have known that I had finished, as I cannot hear the bell that is rung to indicate that the final lap has begun.

I look up to the stands, and see my team-mates, who have come to support me. I cannot hear what they are saying to me, but their smiles tell me I must have done okay. Later I learn that I have qualified for the South African Students’ National Athletics Championships.

While living with hearing loss poses obvious life challenges, especially with accessing information and communication in a predominantly hearing world, my experience as a deaf person illustrates the danger of stereotyping, and that living with severe hearing loss is not a reason not to live life to the full. With the appropriate support, a person with hearing loss can do anything a person without hearing loss can do, except hear, or hear well.

Two Oceans 2017 Chapmans Peak

When I was born, I was born… dead. I had a zero apgar score. It took doctors several minutes to resuscitate me. I suffered oxygen deprivation, and had no muscle tone. During my first night of life, I experienced repeated seizures, each one lasting up to 12 minutes. I was airlifted to another hospital, and placed on life support for a short time. While I recovered my muscle tone, I lost most of my hearing.

Despite the fact that, at the age of two, my mother recognised that I could not hear her, doctors insisted that my parents must accept that I was “retarded”, and would need special care throughout my life. My parents were even told that I should be placed in a home, as they could “always have other children”. It was only at the age of 5 that a speech therapist picked up that I was probably deaf, and that I was finally appropriately evaluated and diagnosed with bilateral sensori-neural hearing loss.

Just before my sixth birthday, I was fitted with my first pair of hearing aids, and it was only then that I began to learn to speak properly while simultaneously learning to read.

While my parents briefly explored the possibility of sending me to a school for the Deaf, they ultimately chose to send me to a “mainstream” hearing school, where I had to learn to cope in a confusing world where sound, although accessible through hearing aids, was not clear, and where both children and many adults did not understand what hearing loss actually entails. I refused to allow my hearing loss to be a barrier to experiencing the fullness of life, and chose to participate in domains which the “mainstream” world would normally consider out of reach for people who have a severe hearing loss. I sang in the choir, participated in school plays, won public speaking competitions (in two spoken languages), and achieved my Grade 8 Royal School of Music qualification in piano.

Many people do not realise that deaf people have excellent rhythm. I felt the music from within. I was fortunate in particular to have a mother who believed in me, and pushed me to keep working hard to fulfil my potential. I started with piano lessons shortly after receiving my first pair of hearing aids, initially to help me to understand and process the rhythm of speech. I practiced for hours, made many mistakes, but loved the music so much, I stuck it through. Today I compose music, and can play by ear.

It should be no surprise that my favourite composer is Beethoven. His Moonlight Sonata, which was his first composition after becoming stone-deaf, encourages me, and should encourage us all, to realise what the human spirit is capable of. Music, after all, is something that lives within every one of us.

With support from my parents, who helped me understand what I could not hear in the classroom, I did well enough to be accepted at university. I studied at two universities, and in both cases, despite their international reputation as leading intellectual establishments, the lectures were not accessible for people with hearing loss, and most of my lecturers were not accommodating of my needs, even after I spent time discussing my hearing loss with them. For example, only one lecturer ever responded positively to my request to have subtitles placed on a DVD we had to watch for degree purposes. It is worth noting that South Africa has 21 universities, 15 technicons, and 129 Colleges. That is 165 tertiary institutions, all of which are aimed exclusively at the hearing community. Other than the National Institute for the Deaf’s NID College (based in Worcester, in the Western Cape), there are no tertiary facilities geared exclusively towards the education of the Deaf and hard of hearing in South Africa. Furthermore, only a handful of South African universities provide even minimal support services for Deaf and hard-of-hearing students. I got through university by asking a classmate to help me with note-taking, and by battling through the textbooks on my own, most often with no explanations of the text from lecturers.

Ultimately, I graduated from UCT with a BA with three majors. I also hold an MA from UCT, in Religious Studies. Additionally, I completed the Postgraduate Diploma in Journalism at Rhodes University in Grahamstown, and a year of the postgraduate LLB.

In 2006, I started working at the National Institute for the Deaf, based in the division known as DeafNET Centre of Knowledge. I was employed as a Researcher. I was very fortunate to secure employment as, according to the Integrated National Disability Strategy of 1997, only 0.26% of South Africans with disabilities were employed at that time – and the situation today is much the same. Given that 20% of persons with a disability had hearing loss, it is disturbing to note that only a small fraction of the 0.26% of persons with disabilities who are employed are Deaf or hard-of-hearing!

Among my highlights during my 6 years working at the Institute for the Deaf was the opportunities I had to travel and lead the training of deaf people around Africa. I designed leadership and management courses for Deaf people, and one of these workshops took me to Bujumbura in Burundi. We spent two weeks there, at a time where the country was still dealing with the ravages of civil war, and there was talk of an imminent threat from Somalia. Everywhere we moved there were military barricades, with armed searches. On occasion we taught to the sporadic sound of gunfire. Once, at a barricade, a soldier mounted our transport, and pointed his rifle to my head. Our interpreter stood up and it emerged later that they negotiated for my life, and money was exchanged. Burundi was a surreal experience, but I have no regrets. These are the experiences that help give a life perspective, and meaning – and appreciation for our own personal journeys.

I also had the opportunity to travel to Swaziland and Ethiopia, as well as Sweden, where I participated in an advanced training programme on disability and human rights in Africa. These experiences – from training in a warzone and walking through some of the poorest areas of Addis Ababa, to possibly the epitome of a first world country – have all contributed to my sense of what is possible for a human being to accomplish in her or his life. One does not need necessarily the materials available in a first world country to live out one’s potential. The people I trained were among the poorest of the poor, living with limited resources, and no active employment. But they had passion, they had drive, and it has been one of the most rewarding experiences of my life to follow their journeys post training and to see what they have done with the knowledge gained. One gentleman stands out for me. He overcame his circumstances of poverty, isolation through profound deafness, and no access to resources, to sit today as a member of his country’s parliament. If you have the drive and the passion, you can do anything in this life. Your potential is determined only by you.

One of my personal highlights has been becoming active within Deaf Sports structures. It has been a huge privilege for me, as someone who, despite a severe hearing loss, grew up outside the Deaf Culture, to have been embraced by the culturally Deaf community. During our six years living in Worcester, where both of our sons were also born, I served as Chairperson of the Boland Deaf Sports Association, and as Athletics Administrator for the Boland, as well as the Western Cape. I also served as a member of the Western Cape Deaf Sports Federation’s executive committee, and chaired the mainstream Boland Disability Athletics commission, facilitating athletics for athletes who are deaf, visually impaired, use a wheelchair, and have intellectual impairments. I served as Secretary of the South African Deaf Cycling Association, and Development Officer for Western Cape Deaf Soccer, as well as team manager for Boland Deaf Soccer.

In September 2007, together with a colleague, we reformed the South African Deaf Rugby Union, which had enjoyed huge success in the 1970s and 1980s especially, with a formidable Deaf Currie Cup, as well as playing three unofficial Tests against the Deaf All Blacks – with SA winning the three match series. By 2001, with no financial support, SA Deaf Rugby had disbanded. I established contact with my predecessor, who by then had emigrated to England, and that started a process which has been a huge learning curve for me and those who are part of our team. In short, over the next 7 years, we compiled a database, established contact with all the mainstream provincial rugby unions, did presentations, and held several meetings with SA Rugby – which culminated in our being accepted as an affiliated associate member of SA Rugby in March 2014. That September we held our first national trials, and in August 2014 we hosted our first official two-Test series, in Pretoria, against the current Deaf world champions. I served as team manager on this occasion. While we lost both Tests, we gained immeasurable experience. Losing is not always a bad thing. Often we learn far more about ourselves, and life’s greatest lessons in the process of loss. Both on the sports field, and also, more especially, in the context of life generally.

While I love the vibe of sports administration, I am an active athlete. Holding dual citizenship, (South African and British), I have won my national colours in Athletics, representing Great Britain at both the World Deaf Athletics Championships, and the Deaflympics (Olympic Games for the Deaf), both times in the Marathon. At the 2008 worlds, held in Turkey, I finished 7th, running a Deaf Olympic qualifying time. I currently hold a number of British and South African Deaf records, including the 30km and 50km road records, and the 20, 25 and 30 0000m track records. In 2012 I was asked to serve as Technical Director for the second World Deaf Athletics Championships, held in Toronto, Canada, where I was privileged to work alongside the chief technical director for the IAAF, David Weicker. It was an extraordinary opportunity, and a privilege to be able to give back to a sport that has given me so much.

I remain active in the hearing Athletics world, and have been awarded my provincial Masters Athletics colours for Boland and Border. I was afforded the opportunity to represent South Africa at the Africa Masters Athletics Championships, in Algeria, in 2010. Recently (July/August 2017) I competed in my first 10-day race, where I broke the South African/African 35-39 age group record, running 886.748km in those 10 days. It also improved the British 10-day record. Subsequently I received an invitation to compete at the Ultra Corsica 1000km in 2018 – considered one of the most gruelling foot races in the world, with only 50 athletes invited, all of whom have had to meet stringent qualification standards. It is a huge honour to have been invited, and to again have an opportunity to represent my country in such an elite, and enormously challenging race.

When I competed at both the 2008 World Deaf champs, held in Turkey, and the 2009 Deaflympics, in Taipei, I felt enormously privileged, not least because the very fact I was able to line up was nothing short of a miracle.

In April 2007, I spent a month in hospital, undergoing tests for an illness that rendered me unable to walk unaided. While there was never certainty on what caused this muscle weakness, with the symptoms mimicking elements of both parkinsons and MS, the effects were severe. My muscles weakened rapidly, and I could not stand without wobbling, and could not even walk unassisted. It took me several months to learn to walk again without the use of a stick. It was an unbelievably dark period in my life. I remember the night, though, that changed everything. In the throes of deep depression, I prayed to God. I said to Him that He had given me the gift of running, and acknowledged that the way I understand life, and make sense of it, is as a runner. I prayed that, if it was His will that I must remain in a wheelchair, that He give me the strength to endure what I must. But that if He healed me, I would dedicate every run and race from that moment on to Him.

Today I run, and I run to honour Him. I am grateful that God took me to that desperate state, for two reasons. One reason is that it taught me to deeply appreciate the gift of being able to run, irrespective of the result of a race. One can win a race, and break records, but records come and go, and one day we will lose and someone else will take over as champion. So what remains? Why do we run, or work where we work, or do whatever it is we do that we are passionate about? Is it to win, to be first, to be the best only? Or is there something far deeper that propels us? I have also learnt that God can give us the world and everything in it. But He can also take it all away in a heartbeat. If our trust and hope is in Him, then nothing else matters. We can lose everything, but still know that we have everything, because our identity is in Him, and not the things of this world. That belief is what sustains me, as a person who is deaf, who has survived debilitating muscle weakness, but also as the father of a son who lives with a terminal illness.

Our firstborn son, Brendan, is 9 years old, and lives with a rare, degenerative brain disease called Moyamoya. This illness constricts the arteries in his brain, starving the brain of oxygen, triggering strokes. He suffered his first major stroke two weeks before his 4th birthday. By the time he was correctly diagnosed, he had had 3 major strokes, and several TIAs or minor strokes. In March 2014, at the same time as SA Rugby approved our Deaf Rugby as an associate member, our Brendan had bilateral revascularisation surgery at Red Cross children’s hospital in Cape Town. In most cases the child will only have had one stroke, if at all, by the time they have the operation – which is the only recognised treatment for Moyamoya, where successful operations will stem the occurrence of further strokes. The child would also normally only be operated on one side of the brain. In Brendan’s case, his condition was so severe they had to operate on both sides of his brain.

The surgery lasted around 7 hours. I remember him coming out of surgery, smiling and saying, “Hi Dad”. Six hours later Brendan suffered his 4th major stroke, which was also the worst one yet. It rendered him completely paralysed, unable to speak, and with difficulty swallowing. The worst came when the pressure on his brain rendered him for a brief time completely blind. As the swelling reduced, his vision, thankfully, returned. Towards the end of his time at Red Cross, 3 weeks later, Brendan spoke again for the first time. It was barely comprehendible, but we could not miss those most beautiful of words: “I love you.”

 

 

He was in ICU for a week, and then High Care another 3 weeks, before being discharged using a wheelchair. Fast forward three and a half years, and Brendan, miraculously, no longer uses a wheelchair, except when especially tired. He walks, though, with a pronounced limp, and falls regularly.  His speech remains very poor, slurred and drawn out, but he can talk. He has virtually no functioning in his right arm and hand. He suffers excruciating headaches, and suffered a 5th major stroke late 2016, as well as several minor strokes, as well as seizures. One of these seizures stopped his heart, necessitating CPR.

He is our miracle boy and, while we are told he is not expected to live to adulthood, we cherish the time that we do have with him.

tim stones family

I have come also to realise that God has a purpose in all our experiences, especially the times of pain and hardship. I used to wonder why God took away my ability to move, and placed me in a wheelchair, and then having to learn to walk again. Brendan was just 2 months old at the time. When Brendan had his strokes, and was dependent on a wheelchair, then I understood why what happened to me happened. It was to help me to be a better dad for my son, to have empathy and compassion for his situation and to be able to support him fully.

Living with our firstborn son has also taught us to fully appreciate the gift of life. Every day is a precious gift, and every moment is to be cherished purely for what it is. Take nothing for granted. Celebrate your loved ones. Cherish your time with them, and be there fully with them. They are what truly matter. Everything else is really not that important. People matter. In your work relationships it is our interaction with our colleagues and work mates that defines the ultimate success of your company. If you invest in your colleagues, you benefit, and your company will thrive. Life is all about the people in our lives. Cherish them. Cherish life.

In October 2016 I had the privilege of participating in the Forever Resorts Mr Deaf South Africa pageant, held in Pretoria, South Africa. After an intense preparation week which culminated in a Gala Evening held at the Atterbury Theatre in Pretoria, I happened to be chosen first runner up. I also received the Charity Award, for raising the most funds for the Decibel Cochlear Campaign, an initiative of the Miss, Mrs & Mr Deaf South Africa organisation, which aims to raise awareness of deafness and the realities and experiences of deaf people in South Africa, as well as essential funds to support deaf people, especially children, to be able to receive the gift of sound through acquiring a cochlear implant.

Following the pageant I was approached by SA’s foremost long ultra athlete, Johan van der Merwe, and invited to represent South Africa at the 6-day Race of Nations World Trophy, being held in Hungary in May next year. He advised me to run a 48 Hour race that took place that December in preparation for the international adventure, to gain experience in longer ultra distance racing.

The 48 Hour race was a journey of the soul, held on a 1km circuit at a sports complex in Johannesburg. Some people thought I was completely crazy to take on what I knew would be extraordinarily tough physically and mentally, a race that would push me to the very extremes of endurance. But it is precisely because it is so hard that I wanted to attempt this race, and the subsequent 10-day race I competed in this year (I chose to do that over the 6-day world trophy, to gain more experience before going overseas).

Cropped Spoils of War

For both the 48 Hour and the 10-day races, I became the first person from my province to officially complete these events, and the first deaf person in the world to do so. Should I compete at the Ultra Corsica 1000km next year, and complete it, I will become the first deaf person in the world to complete 1000km in an official race.

But that is not why I am run these races. I hope to inspire other people who are deaf, or who live with some kind of disability, or who do not live with a disability but have other life challenges, to never give up on dreaming, and to chase their dreams, whatever they may be for each one of us. To see the possibilities in life, the enormous potential, no matter the circumstances that confront us. To never lose hope, to keep the faith, no matter what challenges or trials befall us. To not allow our circumstances to define our potential, but to write our OWN story.

I ran the 48 Hour and the 10-day on behalf of the Decibel Cochlear Campaign, an initiative of the “Miss, Mr & Mrs Deaf SA” organisation, specifically to support multiply disabled deaf children (who attend Whispers Speech and Hearing Centre, based in Pretoria) – aiming to raise awareness of and funds to help them receive the gift of sound through acquiring a cochlear implant.

Bonding with the kids

It is a privilege for me to go the distance for these children. I hope in doing so they will be encouraged to always keep on dreaming their dreams, to chase the wind, and to choose to see the rainbows through the storms. That is my prayer also for our beloved Brendan. It is my prayer also for each of you who have taken the time to read these words.

Athletes with a disability, athletes who are deaf, encounter many hurdles as they chase the wind. Ultimately, it is our endurance, and our courage to persevere despite the obstacles we face, that will be our greatest legacy. You are the master of your fate. You alone determine the potential of your life. This is your moment. Carpe diem. Seize the day! Choose to make your lives spectacular.

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