Coming Full Circle With Technology

Joneskids

Growing up, even as a child of the 80s, I’ve have never been great with technology. I can post pictures on Facebook and record my favorite Housewife reality show on my DVR, but nothing much more advanced. When our family began our journey with two children with hearing loss, technology was an idea that terrified me. As I began my research after our children were diagnosed, I quickly felt that without getting an engineering or medical degree in my spare time, I would never understand the explanations I was given for the equipment being used to identify their hearing loss–nor the technology being suggested to help my babies hear better. Our son Harrison was identified at birth and our daughter Alexis was correctly diagnosed at four years old after a misdiagnosis at birth.

I thought my involvement with hearing aids stopped at picking out cute colors, not learning a second-language to understand words like hertz, tympanograms, sensorineural, and cookie-bite hearing loss (a configuration of hearing loss with less sound perception in the middle frequencies). I felt like I was drowning in a sea of alphabet soup with all the ABRs, OAEs, ENTs, FMs, IEPs and IFSPs. Dealing with all of this while adjusting to being a new mom of three children all under age four was too much for my sleep deprived non-technical mind. For the first few months, I put the dreaded “T” word out of my mind, vowing only to deal with it on an ‘as needed’ basis as they entered school.

As the years went on, and my kids got older, I noticed how my lack of knowledge for technology was limiting them, both in and out of the classroom. My children were having problems with their FM equipment in their schools, and I didn’t know what other options there were. My son was beginning to struggle hearing his soccer coach as the fields got bigger and instruction was coming from further away. My daughter began to shy away from popular adolescent activities such as talking on the phone and going to movies because she could not hear the words clearly. I watched how different my middle son Cole, who has typical hearing, was moving through life compared to my two kids with hearing loss.

Motivated by Necessity

I decided it was time to embrace my fear of technology and, along with my children, learn all I could. I began researching personal FM systems, personal closed captioning devices, closed captioning devices available in public areas, captioned telephones–anything I could find to help bridge the gap so my kids could participate as their peers did. Along with community organizations, school professionals and various websites, other parents of kids with hearing loss were the most helpful in sharing what worked and didn’t work for their kids and guiding me to available options. There has been lots of trial and error, and it’s still a dreaded task for me to research technology. Yet we’ve learned which movie theaters provide our preferred “rear view mirror” closed captioning devices rather than the “captioning glasses”. We’ve experienced which captioning devices are out of range in the balcony seats at our local playhouse. We’ve purchased personal FM Systems and devices to connect hearing aids wirelessly to TVs/music/computers for our children to use outside of school in various activities. We can’t wait for the weather in Las Vegas to cool down and we can wirelessly connect our stereo to the kids’ hearing aids at the drive-in theater so they can sit outside the car and still hear the movie! We’ve downloaded apps and received a telephone from a local deaf/hard of hearing services agency so they can have their phone conversations captioned. The kids have their own bed shaker alarm clocks to help with independence. While having access to all our technology definitely makes life easier, it does not solve all the issues my kids have faced. Simply knowing what options are available (and knowing our kids’ rights through IDEA and the ADA – Americans with Disabilities Act), my husband and I have had educated discussions with the schools and professionals and offer solutions to problems.

Finding A New Passion

To my surprise, all this technology I had been dreading for years wasn’t all that scary. The most surprising element in giving up my own fear was the fact that my daughter discovered her own passion for technology as it pertained to her personally having hearing loss. Beginning last year, our children began attending school at a STEAM Academy (Science, Technology, Engineering, Art, and Math). Our daughter especially began to embrace her hearing loss and used it as the basis for every technology based-presentation she could, including “The History of Hearing Devices” and “People Who Are Deaf/Hard of Hearing Can Do Anything”. She recently attended a Girl Scout summer camp focused on technology, and her final project was to code a computer game. While I can still barely turn on a computer without reading the directions, I was not only amazed she generated a “Choose Your Own Adventure” type game, but that she chose Heller Keller as the main character. She navigated her “Helen” avatar on journeys all over the world for other kids to learn about her experiences. Watching my daughter present this computer game she had coded by herself brought tears to my eyes. I remembered how terrified I was six years ago at not only the thought of how to raise children who had hearing loss, but also the responsibility of understanding the technology that tends to come along with our kids. In an instant, my personal journey with technology, while never-ending, had come full circle. Letting go of my own past fears was the true gift I can give to my children. And, thanks to my technology-creating daughter, I can now quote Helen Keller as saying; “Fear: the best way out is through.”
Editor’s note: Jones serves the NV Chapter as Guide by Your Side Coordinator.

 

This article and many more are found in The Communicator. To receive quarterly issues:  The Communicator.

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Having a Laugh with D. J. Demers, The Hearing Aid Guy

DJ-Demers-Comedy

D. J. Demers is a comedian who is known as “The Hearing Aid Guy.” D. J. appeared on America’s Got Talent in 2016 and twice on the Conan show.   D. J. recently wrapped up a 30-day Hear to Hear Comedy Tour.

D. J. suspects he was born with some loss of hearing. He had chronic ear infections as a child and received hearing aids when he was four.  “My parents encouraged me to be proud of my hearing aids, ‘don’t be shy, don’t hide them,’ but I was different from most other kids,” D. J. explained.

D. J.’s memories of his school days were positive ones as he remembers hanging out with the cool kids who accepted him. He was active in sports, which presented challenges whenever his hearing aids met an outpouring of sweat.   “I was always scared that if I sweated too much, my hearing aids would die, and that caused me some embarrassment,” D. J. said.  “I  learned some coping skills–I realized if I played outside and then went inside, temperature change would make the sweat worse,  so I learned how to alleviate that–I  would stop five minutes before the bell and then cool down before going in.”

D. J.’s defining moment came when he was just ten years old while on a bus to a baseball tournament. He turned to a friend and said, “I’m going to a be a stand-up comedian.”

Even while giving his high school valedictorian speech, D. J. mentioned his dream of becoming a comedian.

But his mother had other advice: go to college and get a business degree.

“I always joke that at 18, I gave up my dream to go to school,” D. J. laughs.

Even at university (D. J. is from Canada), D. J.’s mind was still on comedy. In between his studies, D. J. read book after book about other comedians–Richard Pryor, Jerry Seinfeld, George Carlin, to name a few.

“There’s no clear path to become a comedian,” D. J. said.  “By reading their books and getting a sense of their path and struggles, that gave me enough hope that I could give it a shot–it didn’t seem like it was out of reach.” 

During his second year at university, D. J. drummed up the courage to pursue his dream.

“I felt the itch to get on stage and give it a shot, so I called into the comedy club in Toronto–you have to call and leave a message and then later that same day you call again to see if they chose you.   For four weeks straight I didn’t hear my name when I called in. I was upset and sad, but a little relieved–‘thank God I don’t have to do it.’  The fifth week I called in and the message said ‘D. J. Demers.’   Oh s%&t! I have to do it now!  I lived an hour away–I went and did a five minute set. I was immediately hooked. The first person who laughed made me realize ‘this is what I want to do! I want to make people laugh!’  I only had a few laughs, but it was enough. I stayed with it. 

d j demers

D. J. pressed on, doing open mic nights and getting booked on small venues for seven years. His big break came when the Conan Show reached out and invited him to perform. “I had a fun set, people seemed to enjoy it,” D. J. recalled. “That was the first time I had the feeling of ‘maybe I can do this for the rest of my life.’ My mom was in the audience–it was the first time she went to L.A.  It was a big turning point for me in my life and it’s something I will remember forever.”

www.djdemers.com

 

 

 

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

My Ear: New Speech to Text App

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

 

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Hands & Voices Giving Tuesday 2017

hands and voices babies

We have a day for giving thanks. We have two days for getting deals. Now, we have #GivingTuesday, a global day dedicated to giving back.

On Tuesday, November 28, 2017, charities, families, businesses, community centers, and students around the world will come together for one common purpose: to celebrate generosity and to give.
Portal Page (1)
It’s a simple idea. It’s a way for your family, your community, your company, or your organization to come together to give something more. Then tell everyone you can about how you are giving. Join us and be a part of a global celebration of a new tradition of generosity.
HV Facebook page (1)
Why are we doing Giving Tuesday?
It is a way for Hands & Voices HQ to raise funds and awareness on a national level. It will be the only giving campaign that we ask you (personally), your board and your chapter to participate in. It will provide us with the funds to continue to support families with Deaf and Hard of Hearing children.
We also have a brand new book for families: Stories for Families Raising Deaf and Hard of Hearing Children (ebook)

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Eric Nooker: Soil Scientist

eric nooker

Eric Nooker wears two hats: he’s a Soil Scientist for the U.S. Department of Agriculture and works with families with Deaf and Hard of Hearing Children as a Role Model for Lifetrack.

Karen Putz, Co-Director of Deaf and Hard of Hearing Infusion, sat down with Eric to get a glimpse of life as a Soil Scientist and Role Model, complete with daily life thrown in:

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Janel Frost: Reflections on Communication Access at Family Gatherings

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
Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Hands & Voices Leadership Conference 2017: Cultural Perspectives

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.

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Tim Stones, Ultra Distance Runner

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.

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

A New Model of Deaf and Hard of Hearing Infusion

Towards a New Model for the Deaf Infusion of Leadership in EHDI Services

By Christine Yoshinaga-Itano, Ph. D.

christine itano

The following is a Synopsis of the Libby Harricks Memorial Oration number 17 given in Australia in June 2015. The Deafness Forum of Australia granted permission for this printed synopsis.  

 

Imagine a world where a family with a newly diagnosed child with hearing loss is provided services by a pediatrician who is him/herself deaf.

Today, we have some examples of individuals with this level of education, but, if we are successful, these numbers will increase. Perhaps the Ear, Nose and Throat physician is also deaf or hard of hearing and the audiologist who diagnoses the hearing loss is deaf or hard of hearing. The parents are contacted by an early interventionist who is deaf or hard of hearing. The psychologist, social-worker, or counsellor who assesses the family’s child or who assists them through their adaptation to the diagnosis is deaf or hard of hearing. Some of these individuals communicate exclusively through spoken language. Others switch from spoken language to sign language depending upon the conversational partner. Others communicate exclusively through sign language.

In this imagined world, parents would navigate through the health and educational systems being provided services by individuals who are themselves deaf or hard of hearing, as well as professionals who are hearing. They are interacting with these individuals, not because they are deaf or hard of hearing, but because they have a significant service and expertise to provide the family.

Thus, we arrive at a concept of infusion into the fabric of the entire system. Many parents who have newborns diagnosed with hearing loss have never met or interacted with an individual who is deaf or hard of hearing. They may have only stereotypes of what it means to be deaf or hard of hearing. Their adaptation to the diagnosis which often involves grief and mourning is influenced by their previous experience with deafness and hearing loss. If parents’ initial interactions with the newborn hearing system happen to be with individuals who are deaf or hard of hearing, there to provide them with professional expertise, they will focus not on the deafness/hearing loss, but on the person who is supporting them. Knowledge about what a child who is deaf or hard of hearing could become and the things s/he could accomplish, can dramatically alter the sequence of the process of grieving.

As children who have benefited from early hearing detection and intervention (EHDI) systems grow up, there are an increasing number of them who are choosing to participate in the system as professionals in a variety of capacities. There are, for example, increasing numbers of children who are deaf or hard of hearing, users of hearing aids and cochlear implants, who have chosen to become audiologists. Some have chosen to become early intervention providers or teachers of the deaf. There is a growing number of individuals who are deaf or hard of hearing who have become allied health professionals, physicians, psychologists, social workers, teachers, pharmacists, dentists, occupational therapists, and speech/language therapists.

The journey for families typically starts at the referral from the universal newborn hearing screening (UNHS) in the hospital to either an outpatient re-screen or a diagnostic audiological evaluation. The anxiety of families arises when they are told that the child did not pass the hearing screening and increases at each level of the system and with the time that elapses until the family receives more information. For the family who is greeted by an audiologist who is a hearing aid, or a cochlear implant user or has chosen a visual communication without the use of amplification, the family begins, often for the first time, to establish an idea of what it means to grow up deaf or hard of hearing.

 

Deaf/Hard of Hearing Infusion in an existing EHDI system

In one metropolitan hospital system, two of the audiologists have congenital hearing loss. Families whose infants are tested by one of these audiologists would have the confirmation that the child is deaf or hard of hearing delivered by a professional who is deaf or hard of hearing. Immediately after the diagnosis from any audiologist at this hospital, the parents go to an office at the same hospital, where they are introduced to a professional who is profoundly deaf and who has cochlear implants but who used hearing aids for most of her life. She has worked as an early intervention professional for families who have infants and toddlers who are deaf or hard of hearing for over 25 years. This experienced professional provides counselling services immediately after the diagnosis of hearing loss to a significant proportion of families with newborns identified after UNHS in the state of Colorado, because she works in a pediatric hospital that is a center for excellence for pediatric patients with hearing loss.

Such interactions create a new “normal” for parents of newly-identified infants/children who are deaf or hard of hearing. Their perspective about deafness and hearing loss is now impacted by an individual who provides them support and professional services, knows what it is like to grow up as a deaf/hard of hearing individual and what it is like to live and work as an adult who is deaf.

If the family lives in the largest metropolitan city in this state, the first contact in early intervention is an educator of the deaf who specializes in early childhood deafness. She has a Master’s degree in deaf education and also in Spanish. She grew up with a bilateral severe-to-profound hearing loss and received a cochlear implant as an adult. She is fluent in sign language, spoken English and spoken Spanish. She has extensive experience working with families with newly identified children who are deaf or hard of hearing. She is a Colorado Hearing Coordinator who is designated as the first contact for families in the most highly populated metropolitan area in the state.

This Colorado Hearing Coordinator provides families with the many options that are available for their family, including early intervention services focusing on language, cognition and social-emotional development and if the family chooses, sign language instruction in the home from an instructor who is deaf or hard of hearing and a native and/or fluent signer. These services can be provided weekly in the home, in addition to other intervention services and the family may include other members of the family or care providers

A parent of an early-identified child in the state of Colorado provided this quote: “When we first received our son’s diagnosis, I looked at the doctor, he was hearing. I looked at the audiologist, she was hearing. I looked at the nurse, she was hearing; and as we walked out, I looked back at the receptionist and she was hearing. I had no idea what this (raising a deaf or hard of hearing child) was going to look like until you (the deaf adult) walked in the door.”

In all of the scenarios described above, the professionals who are deaf or hard of hearing, have professional training and experience in the professional service that they are providing to the family. In some cases, unless the professional identifies her/himself as a person who is deaf or hard of hearing, the family may not be aware or may not immediately realize that the professional is an individual who is deaf or hard of hearing.

While it is unlikely that any one family would see all of these professionals who are deaf or hard of hearing, the odds that they will encounter at least one of these professionals is quite high. On average, the families in Colorado will have interacted meaningfully with multiple and diverse professionals who are deaf or hard of hearing in the first few years of life.

In each of these situations, the family has an opportunity to ask these professionals questions about their personal stories and what it was like to grow up deaf or hard of hearing. Just as would occur with a hearing child, the family and child are exposed to a vast variety of diverse individuals, thus, providing a perspective early in the child’s life that there is a world of opportunities available, things they can anticipate as their child grows up, as well as challenges that families and children face.

Deaf/Hard of Hearing Role Models

In some systems, individuals are trained as role models.

Parents often ask basic questions: What’s wrong with my child? What will my child be like later? What can be done to help my child? (Bagnato, Neisworth, & Munson, 1997). Deaf and hard of hearing individuals with training are especially skilled at being able to respond to these families.

Questions reported by Hands & Voices organization indicate that some common questions that parents ask Deaf/Hard of Hearing Role Models are:

1) I saw on the internet that deaf adults have a low reading level – is that true?

2) What will my child’s speech be like?

3) You have good speech – how can I make sure my baby does?

4) Do you wear hearing aids? Why or why not?

5) Will you get an implant? Why or why not?

6) Should I stop playing my guitar?

7) Kids are cruel…. How can I make sure that my child won’t be teased?

8) You have good self esteem – how do I develop that in my child?

9) When will I stop crying?

10) What about school… can my child go school with his sister? Or does he need a special school? Did you go to public school?

They often ask personal questions such as:

1) Do you have kids? A spouse? Hearing or deaf?

2) What about sports?

3) Can you talk on the phone?

4) Can you drive?

5) How do you hear in the dark?

Parents appreciate a personal perspective from a D/HH role model. It increases the families’ openness to examine issues in greater detail. Families report that interactions with D/HH individuals calm anxiety.

Parents often believe initially that they have lost a modality forever. Most parents of newly identified children do not realize how meeting a deaf or hard of hearing adult will help them until after they have had the opportunity. Systems must create opportunities for parents to meet deaf and hard of hearing adults through presentations, workshops, home visits, and social events. Deaf and hearing families interacting together in everyday social environments, such as birthday parties, family get-togethers, attending sports events (baseball, basketball, football) games, theater, and dances, should be a normal expectation of life for our children of the present and future. Parents who see D/deaf and hard of hearing adults as valuable members of their team begin to understand the potential in their child. Often the D/deaf/hard of hearing adult is able to articulate what the child cannot yet. They lend ability and creditability for the child’s upcoming/future needs. They assist the parents as they discover the potential and strengths of their child. They can give hope and encouragement through the inevitable ups and downs of those early years and they can assist the family in finding new ways of communicating and thinking and living with deafness and hearing loss becomes the new normal for families. Families have probably never thought about:

1) driving with an inside car light on for visual cues,

2) looping the car, using FM assistive technology,

3) saying goodnight with the light on,

4) going upstairs facing the child and not speaking while climbing stairs without facing the child,

5) watching for opportunities to close the gap (incidental learning),

6) pointing out opportunities to cue the child to awareness of sound, or

7) using a vibrating alarm clock.

The deaf or hard of hearing child lives in a hearing world (family, church, neighbors). Meeting the deaf adult soon after diagnosis provides the family with an early opportunity to ask some of their questions and see these communication strategies modeled. The involvement of adults who are Deaf and Hard of Hearing should not be as token members, but leaders and trendsetters in our systems of care. Individuals who are D/HH can help families overcome family barriers to open, honest communication. They can provide families with examples of a sense of humor. They themselves provide an exceptional model for great inter-personal skills. Hearing professionals can benefit by inviting a role model to accompany them on family visits. However, if these individuals are serving a professional role, then there should be a mechanism for monetary compensation for their time and expertise. Deaf and hard of hearing individuals should be included in panel discussions and social opportunities. Play groups opportunities should include both deaf and hearing parents. In the Colorado system, the activities sponsored through our Families for Hands & Voices provide many opportunities for social and professional interactions with D/HH adults and their families. The Hands & Voices organization has a policy for the Infusion of Deaf/Hard of Hearing participation within Hands & Voices. This policy can be found at the following website: http:// www.handsandvoices.org/articles/deafpersp/V15-2_deafinfusion.htm

Deaf Mentors

Watkins, Pittman and Walden (1998) published outcomes from the Experimental Deaf Mentor Program established in the 1990s. The program provided families with a Deaf Mentor who taught the families American Sign Language, information about deaf culture and their personal knowledge of deafness. The children receiving a Deaf Mentor in Utah were matched with children in a SKI-HI early intervention program in Tennessee who did not have a Deaf Mentor. They found that the children participating in the Deaf Mentor program had significantly higher scores on tests of early receptive and expressive language. Today, the Deaf Mentor program includes about 18 states but not all states have programs that provide services to all families who have children who are D/deaf or hard of hearing who would like to learn American Sign Language.

In addition, there are other states that have initiated sign language instruction programs including Arizona, Arkansas, Georgia, Hawaii, Illinois, Vermont, Minnesota and Wisconsin, New Mexico (Abrams & Gallegos, 2011), and outside the United States, Kenya. Some programs call these sign language instruction programs Deaf Role Model Programs, (Abrams & Gallegos, 2011, Mohay, Milton, Hindmarsh, Ganley, 1998, Parasnis & Fischer, 2005; Takala, Kuusela & Takala, 2001).

In 2013, the Early Intervention Supplement to the Joint Committee on Infant Hearing Position Statement (2007) was published (http://pediatrics.ons.org/content/131/4/e1324.full JCIH, 2007). Two objectives dealt with deaf and hard of hearing individuals. Of the 11 objectives, three of them include objectives related to the topic of this presentation. The following discussion includes the exact wording of this Early Intervention Supplement, designed to be as recommended practice.

Goal 3a. (pg. e1328) Intervention services to teach American Sign Language (ASL) will be provided by professionals who have native or fluent skills and are trained to teach parents/families and young children.

Goal 10. (pg. e1337) Individuals who are D/HH will be active participants in the development and implementation of EHDI systems at the national, state/territory, and local levels. Their participation will be an expected and integral component of the EHDI systems.

Goal 11 (pg. e1338) All children who are D/HH and their families have access to support, mentorship, and guidance from individuals who are D/HH. This goal intends that families have access to meaningful interactions with adults who are deaf or hard of hearing who have the knowledge and skills to mentor, support, and guide families in culturally and linguistically sensitive ways and to serve as communication/language and social role models and mentors for deaf and hard of hearing children and their families.

The overarching goal is to have deaf and hard of hearing individuals woven into the fabric of EHDI systems at every level. Deaf and hard of hearing individuals know “what works” to meet their language and communication needs in a way that hearing people cannot. Since the support of language and communication of babies is intended to be the heart of EHDI systems, it is critical to include deaf and hard of hearing adults in these systems.

Currently, there are few, if any, EHDI systems that include deaf and hard of hearing participants in a meaningful way. The system should have diversity of representation at many levels. Deaf and hard of hearing persons should be included, for example, as EHDI directors, EHDI advisory panel chairs and members, administrators, Part C coordinators, audiologists, pediatricians, counselors, mentors, sign language teachers, and in other roles.

The Joint Committee on Infant Hearing Year 2007 Position Statement includes numerous recommendations supporting the inclusion of deaf and hard of hearing individuals in the lives of families with deaf and hard of hearing children (JCIH, 2007). The JCIH states:

“Almost all families choose at some time during their early childhood programs to seek out both adults             and child peers who are deaf or hard of hearing. Programs should ensure that these opportunities are             available and can be delivered to families through a variety of communication means, such as Web sites,e-mail, newsletters, videos, retreats, picnics and other social events, and educational forums forparents” (JCIH, 2007, p. 909)

Research demonstrates the benefits to families of connections with members of the deaf and hard of hearing community. Parents who have many contacts with deaf and hard of hearing adults exhibit a strong sense of competence in regard to raising their child (Hintermair, 2000). Hearing parents identify deaf parents as one of the most important sources of support (after teachers, therapists, and spouses) (Meadow-Orlans, Mertens, & Sass-Lehrer, 2003). Children from families who received deaf mentor services made greater language gains, had considerably larger vocabularies, and scored higher on measures of communication, language, and English syntax than similarly situated children without deaf mentor services (Pittman, 1998). Deaf community members are able to provide deaf children with something hearing parents cannot, experience as a deaf person.

In summary, the purpose of EHDI systems is for children who are deaf or hard of hearing to have the opportunity to achieve their potential, to have comparable opportunities to children with hearing. When individuals who are deaf or hard of hearing are infused throughout our EHDI systems, so that children who are deaf or hard of hearing can decide to become doctors, psychologists, audiologists, teachers, social workers, early intervention providers, sign language instructors, or deaf role models, successful accomplishment of the goals of EHDI will be met. Providing families and children with the support they need to develop skills commensurate with their cognitive potential should result in a world of opportunity for the newborns that are identified. That world is within our reach.

 

About the Deafness Forum Of Australia

The Australian Government funded the establishment of Deafness Forum in 1993 to provide quality advice to it on behalf of the entire deafness sector. This advice, offered consistently over two decades has informed government policy and played an important role in building a fairer and more inclusive nation.

The full monograph of this presentation including information on the Deaf Child’s Bill of Rights as implemented within educational systems is available at http://www.deafnessforum.org.au/index.php/events/libby-harricks-memorial-oration

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Deaf and Hard of Hearing Teens: Fitting in When We Stand Out

The Journey through Adolescence: Fitting In When We Stand Out

Winning Sportsmanship

 

The adventure of adolescence is full of discovery both socially and within ones’ self, and even more so for someone who is deaf/hard of hearing.  Adolescents seemingly expend constant energy to become strong, unique individuals while at the same time trying to fit in without standing out.

For young people who are deaf or hard of hearing (DHH), adolescence provides the opportunity for them to own their hearing without it becoming their central identity. People do not want to be defined solely by their audiogram, technology, or by the accommodations they use.

Supporting our youth as whole people who happen to have hearing differences may lead to increased acceptance of self.  When a group of teens who are DHH were asked what they would wish for in a perfect world, they did not wish for normal hearing. Instead they wished that “people wouldn’t think of us as impaired or broken”. They wish that people would think of them as a teen first, person with hearing loss second.  At the Colorado Hearing Foundation-sponsored Journey Through Adolescence Conference (Children’s Hospital Colorado March 2017), Jonah Berger, therapeutic mentor, stated “…disability should not be in charge, we are in charge…” Adolescents can learn to take charge and become confident with who they are as they choose their path in life.

IMG_0156

To support confidence and self-advocacy for teens who are DHH–the strategies below, built around pillars of growth through adolescence, may help them on their journey of self-discovery

 

  1. EMPOWER ADVOCACY:

Empower advocacy by teaching adolescents how to become active in their audiology and educational appointments. Glaring at their audiologist or counselor may give them a feeling of control, however, it does not build partnerships. They need to tell these professionals what makes them cringe, what makes them grumpy or frustrated in school, with their technology, or being deaf/hard of hearing.  Teens should become the expert about their own hearing. They need to describe what makes them hear better and how they prefer to communicate. Learning the skills of self-advocacy through partnerships will be an invaluable skill as teens mature into fully independent adults.

 

  1. OPPORTUNITIES FOR CHOICE:

Advocacy works best when you understand your hearing, your technology and what works well for you.  Adolescence is a time for DHH teens to try new technology, strategies and communication styles to have full access to the information that their peers are receiving.  Encourage your teen to explore their options. Sometimes the hardest part of making choices is taking the first step to try something new.

 

  1. BALANCE INTERDEPENDENCE WITH INDEPENDENCE:

Interdependence is how we rely on each other.  Independence is how we rely on ourselves.  Healthy interdependence builds the foundation for future independence and should start early.  The goals for independence for a teen that is DHH should be the same as for their siblings.

For example, teens should be expected to get up on their own and get ready for school in the morning. DHH teens can use vibrating alarm clocks or other technologies to develop this independence. Staying home alone and knowing what to do in case of an emergency are valuable skills for all teens.

 

  1. BEYOND HEARING TECHNOLOGY:

Technology is rapidly advancing and can remove some of the typical and frustrating communication barriers.   To stay connected with friends, teens can now access Instant Messaging, texting, social media, real time captioning apps, video relay.  Internet safety and supervision is critical and must be taught to all children and youth regardless of their hearing differences. Additional information on cyber safety may be referenced at

www.handsandvoices.org/resources/OUR/2014/V17-3_cybersafety.htm

 

  1. CULTURAL LITERACY:

Teens who are DHH benefit from being informed on current teen culture.  Incidental language and learning is rapidly acquired during adolescence through music, movies and TV and are part of the adolescent culture.  There are multiple ways for adolescents who are deaf/hard of hearing to connect with the typical adolescent world and be a part of that culture.  This might include YouTube, videos, lyrics, technology and interpreters that specialize in signing music and live concerts.  Being a part of a team or other activities give the teen another identity besides their hearing.

 

  1. SOCIAL COMMUNICATION:

During pre-adolescent years, a variety of skills are developed through play and guided by adults.  During these years, parents and teachers often help with miscommunication or clarify missed information.  During adolescence, the development of friendships requires more communication skills and less play.   Adolescents need to develop the skills to repair communication breakdowns, which include asking for clarification and/or asking for information to be repeated. Adolescents have the responsibility to increase their ability to be better understood, whether that be through spoken language, sign language or both.  Multiple opportunities to socialize with friends and family members will increase their confidence and ability to repair communication breakdowns.

 

  1. IDENTITY:

As William Shakespeare said, “To thine own self be true…”  Often people with hearing loss are not aware of how exhausting good communication can be. When exhaustion happens, it is easier to revert to faking or pretending that we are hearing rather than asking for repetition for the third, fourth or fifth time. Encourage youth to be true to themselves and to the people with whom they are interacting. Responding with “just forget it”, is unfair to all. People with typical hearing do not hear everything and ask for repetitions with confidence.  Let teens know that it’s okay to take a break when they are working hard to hear and to let people know that is hard to hear everything that is being said.

 

 

IMG_0748

 

 

  1. SELF-ESTEEM:

Let’s be clear, everyone’s self-esteem is fragile. This fragility is not a flaw to be corrected, it is a human condition to be respected in everyone. Like all adolescents, teens who are DHH struggle with self-esteem and self-identity. Hearing is another facet of self-esteem and self-identity.  Teens who are DHH may feel comfortable with people who are hearing, people who are deaf or people who are hard of hearing, depending on the time or the social situation. Make sure they know that they do not need to choose only one group, and that the group is not their self-identity. The development of self-identity is a life-long, fluid process.

 

  1. ROLE MODELS:

You can’t be what you can’t see. DHH role models or mentors are the best kept secret but it shouldn’t be that way.  If teens, parents or professionals are curious about the possibilities and successes of people who are of hearing in today’s world, then seek out the people that are on that journey.  As you and your teen meet people and cultivate stories, keep in mind that your child will have their own unique experiences and journey. For perspectives from teens may be referenced at www.handsandvoices.org/resources/dhh_adults.html

 

  1. CONFIDENCE:

Teasing and bullying will happen whether you are deaf, hard of hearing or if you have typical hearing. Bullies are victims of low self-esteem too.  Bullies attack perceived weakness.  Help your teen learn a variety of skills to get through all kinds of situations. Kidpower.org is an international organization that provides trainings to increase safety and confidence. Your DHH adolescent can teach the community how they want to be treated, what they need for respect, and what they have to offer. The respect one has for oneself becomes the model for the respect one receives from others.

 

by Stephanie Olson, Co-Director of Deaf and Hard of Hearing Infusion at Hands & Voices

and

Lynne Canales, Itinerant Teacher, Englewood Public Schools

 

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail