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.
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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.
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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)

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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:

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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
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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.

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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.

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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

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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.

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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.

 

 

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  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

 

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Jessica Stern: JUST GOOGLE IT

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

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

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

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

“Is this right?”

“Is this normal?”

“Tell me I am not ruining my baby…”

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

CHALLENGES BEYOND THE FRIENDSHIP

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

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

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

“YOU WANT THREE QUESADILLA MEALS!?”

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

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

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

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

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

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

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

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

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

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

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THE FUTURE IS BRIGHT

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

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

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Shelia Cargile: “More Than Fine”

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Shelia Cargile, director of Hands & Voices Mississippi, passed away in a tragic car accident on May 28, 2017.  She passed before she got to see Guide By Your Side implemented in Mississippi. I wasn’t sad for Shelia. I know where she is. I know she is with her mom. I was sad for those of us left here: John, her husband of 19 years, her children, Eli, Emily and Audrey, her twin sister Sherri, her father, and hundreds of friends. I believe the most important thoughts about Sheila belong to her husband and children. Sheila Cargile was a woman devoted to her Christian faith – as is her family.  Their words will reflect this faith and aren’t intended to offend anyone.

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“She was loving, always reading to us, she tried her best to make sure she was doing right, she was and is a child of the most high God, she loved to sing and was on the praise team, she was always smiling, she fought her good fight and I believe that if we fight ours we can see her again someday.”

Emily Cargile

“I love my mama because she was always loving and gentle, she was a great teacher, she loved Jesus, and she was more than just a mom. She was an amazing, fun mom that was also a great singer.”

Audrey Cargile

 

“Everyone has a first ‘true love.’ My Sheila/mom is my first true love. She was/is the definition of beauty and restoration. She carried herself in a more intelligent and Godly manner than 90 percent of people alive. She was fearless and discerning. She was exactly what I look for in a woman.”

Eli Cargile

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“Sheila: a precious gift from God. A beautiful, remarkable wife and mother. The most diligent, sincere, genuine person I’ve ever known. Always smiling and uplifting to everyone around her. A vibrant woman who sought God in everything. She wanted the best for everyone and tried to help them achieve it. She was selfless, joyful, an absolute treasure. Having her as my wife is my greatest achievement.”

John Cargile

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Shelia was fiercely loyal to and madly in love with her family. I have only known her for four years, but felt like we had been connected for a lifetime. The stories she told of her family were beaming with pride. Shelia had a way of being a cheerleader to everyone. She was always smiling. She was a natural encourager. Sheila loved. She loved people. She loved animals. You never knew where Shelia’s adventures were going to take her and her kids. One day she would be tutoring homeless kids. A few months later, she would be loving on shelter animals. She was all things to all people. She was and is a champion for the deaf and hard of hearing children in Mississippi.

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Shelia was an advocate. Through her work with Hands & Voices Mississippi, she touched thousands of lives. I loved being a part of the “Shelia & Julie” that worked to get MS H&V Guide By Your Side started with the help and guidance of EHDI-M and Hands & Voices headquarters. We we’re equally obsessed. Life got in the way sometimes, but we always worked together to navigate our way through being accidental leaders. Sheila had a way of talking to you that was so empowering.  When dealing with tough situations, she would exercise restraint in a beautiful way. She was sugary sweet. When you were with her- you felt like the only people in the room.

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We had a song together. “More Than Fine”. Shelia wanted “More than Fine” for H&V MS (GBYS) and the families she served. She wanted “More Than Fine” for her husband and kids. Sheila will never be replaced. It will take multiple people to carry on her legacy.  She was Chapter Leader, ZOHO manager, newsletter mailer, event coordinator, legislative maven, meeting and workshop attendee, constant networker, consultant for many different facets – just to name a few- joyfully all while homeschooling her three kids and prioritizing spending time with John when we had off of work. She did it all. Sheila is a giant in the faith, and a giant to her cause I, along with many others, feel like we can’t do this without her. We won’t have to carry on this work without her. She searched out, cultivated, and even equipped us with the skills we need. Many people have come forward to take over portions of what she did for MS H&V. Like a friend and Board Member Stacy DeZutter said, “We are going to honor her by carrying on her vision”.

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For Shelia, H&V MS GBYS was birthed despite having to work through pain and travail. Shelia, I thank you for your friendship and I love you fiercely. Thanks to you – your family, friends, and MS H&V will be “More Than Fine”.  On July 15, 2017, Hands & Voices MS Guide By Your Side posthumously honored Sheila in recognition and appreciation of her many years of distinguished service for the deaf and hard of hearing children of Mississippi with the ” More Than Fine” award presented to her husband, children, and sister.

It’s time for all who may to continue and rise up so we can be for her children and those to come what Shelia tirelessly was to ours.

“We are going to honor her by carrying on her vision,” said Sheila’s friend and Board Member, Stacy DeZutter.

Julie Seawright

Program Coordinator
Hands & Voices MS Guide By Your Side

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Judy Yang: A Passion for Badminton

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My name is Judy Yang and I am 18 years old. I’m the only deaf child in my family. My family is from China and I was born in the United States. My parents found out that I’m deaf when I was two years old. They were upset and they didn’t know what to do with a deaf daughter at first. When I was six years old, I received a cochlear implant. 

After my parents divorced, I moved to Chicago area with my mom, two brothers, and my grandparents when I was seven years old. My family moved so that I could attend a school with a deaf program. I was so happy to learn many new things and make a lot of deaf friends at my school in Chicago area because I struggled in school and had no friends in Michigan.

My uncle was a competitive badminton player when he lived in China and he took me to a park district badminton court and taught me how to play for fun when I was in third grade. I enjoyed playing badminton a lot because I had so much fun playing against my family or other members for competition.

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When I was 7th grade, I decided to become a serious athlete in badminton. My mom took me go to my uncle’s own badminton place to meet a new coach, Ilian Perez. Ilian had just moved to Chicago from San Francisco and I was his first student.  It was also his first time to meet a deaf person and he didn’t know how to communicate with me. Ilian tried to teach me how to play badminton competitively, but I couldn’t understand what he said. He asked my brother Justin how to say “fast” in Chinese then he said it to me, but I still couldn’t understand him. He decided to demonstrate the moves he wanted me to do so I could follow his moves during training.

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Today, I usually gesture and read his lips in our communication with each other. I follow what my teammates do when my coach tells them what to do, because I can see what they doing with my eyes rather than hearing it. Deaf people have the power to use visual cues with their eyes than hear!

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I played four years of badminton on the varsity team at Hinsdale South high school in Illinois. In 2016, I became the state champion. I had so many achievements in both badminton and academics. I’m so grateful to have my teammates, family, friends, and coaches–especially my mom–because they all encouraged me not to give up on playing badminton during high school.

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