Archive for the ‘Deaf & HH Adults’ Category

Tim Stones, Ultra Distance Runner

October 4, 2017

Seeing the Rainbows through the Storms

By Tim Stones

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

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

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

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

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

Two Oceans 2017 Chapmans Peak

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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

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

tim stones family

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

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

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

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

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

Cropped Spoils of War

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

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

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

Bonding with the kids

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

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

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A New Model of Deaf and Hard of Hearing Infusion

September 25, 2017

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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Jessica Stern: JUST GOOGLE IT

August 28, 2017

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

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

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

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

“Is this right?”

“Is this normal?”

“Tell me I am not ruining my baby…”

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

CHALLENGES BEYOND THE FRIENDSHIP

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

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

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

“YOU WANT THREE QUESADILLA MEALS!?”

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

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

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

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

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

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

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

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

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

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

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THE FUTURE IS BRIGHT

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

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

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Alyssa Pecorino: There’s No Place Like Camp

May 17, 2017

alyssa at deaf camp

 

 

It’s the end of June.  School has let out and it’s time to enjoy the summer.  Mom and Dad are helping me pack my things for two weeks away at summer camp.  I have never been to camp before and I’m excited to try something new, yet I’m nervous about who I’m going to meet.  

Will I be able to understand them?  

Will they understand me?  

Being a 10 year old, oral, mainstreamed, hard of hearing child, I was never exposed to Deaf culture or American Sign Language.  All I had was the knowledge from Linda Bove of Sesame Street’s sign language book and the occasional commercial or blurb on television featuring Deaf people.  

What was this deaf camp going to be like?  I have a hard enough time understanding people who speak, now I’m going to immerse myself into another language and get introduced to a whole new community.  No pressure there, right?

Moreover, how did we get to this point?  

Like most parents, my mother researched what she could (before the internet and Google) and got advice from everyone including her younger sister, who is a highly regarded speech pathologist on Long Island.  My aunt made her point clear: yes, your child is succeeding orally and using what she has in a mainstream setting, but socially she’s falling behind.  You need to send her to a camp for Deaf and hard of hearing children so she can develop her identity and learn all those wonderful things we don’t learn in school.  The education that children get from camp is just as valuable as a formal education setting, if not more.  This is how my parents came across Camp Isola Bella in Salisbury, Connecticut.

Camp Isola Bella is the oldest and longest running camp for Deaf and Hard of Hearing children in the country.  It’s a picturesque island in the middle of Twin Lakes in Salisbury.  This camp beckons Deaf and Hard of hearing children from all over the world to come enjoy their program and develop their identities.  I was fortunate to be one of them from 1988 to 1993.  Little did I know that the nervous child my parents dropped off would grow to be a confident young teenager just from two weeks in the summer.  I went from crying every night to laughing every day and eventually helping new campers acclimate.  My crying wasn’t from how people treated me, but rather from me adjusting to a new environment and preparing to reveal my new identity.  The caterpillar was becoming a butterfly and this is a dramatic change that was bound to shed a few tears.  Besides, as I wrote to my mother that first week, it’s okay to cry because none of the other campers could hear me anyway.  :o)

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Let’s fast forward to June 2000.  I’m now 21 years of age and more excited than ever to go back to camp.  It was the only place I truly felt happy and free to be myself.  This time, I was going back as a camp counselor and newly-certified lifeguard.  Every fiber of my being is anticipating a wonderful summer where I finally get to give back to the camp that gave me my identity and a community to belong to. I couldn’t wait to welcome those first timers to camp, especially those who are in the same shoes that I was in back in 1988.  In my mind I was only going to do this for a summer or two before getting a full-time job.  After all, how could I possibly be able to make my schedule work to be able to work here in the summers? Could I be lucky enough to be able to do this for more than one summer?  

 

Fast forward to today: it’s now my 18th summer at Camp Isola Bella.  I went from being a teacher’s aide at various schools on Long Island to a teacher in both New York and Connecticut to an administrator at the American School for the Deaf.  I worked my way up from counselor to Camp Director and I have no intention of leaving any time soon.  When you find a place that isn’t a job but rather a passion that requires you to pinch yourself to believe you are lucky enough to be working there, you don’t leave.  Seeing new and old campers come every summer to a place where they are free to be themselves, learn the meaning of resilience and develop their identity–that is a place to be cherished.  It’s awesome–which is why our theme this summer is “Believe in *A.W.E.S.O.M.E.!”, which stands for Adventurous World of Experience with Signing Opportunities and Meaningful Education.

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Let me just share one story with you before I wrap up this article.  Many parents are not only concerned about sending their children away from home, but also hesitant that their child will thrive in an environment that doesn’t use technology.  Yes, that’s right, most camps don’t allow phones, iPads, laptops, etc.  We’re one of them.  We had a young teenager come a few years ago who was anxious being away from home for the first time, but not only that, she was upset there was no television or wi-fi.  After a few days, she adjusted and soon forgot about the lack of technology and focused more on being with people and making friends. She came back the next year and admitted she wasn’t looking forward to being without her TV again, but enjoyed the program and that helped a little with the anxiety.  She was adamant that she MUST have TV and looked forward to getting it back when camp was over.  Naturally we all chuckled and quickly we forgot about the technology again.  

Finally, during her third year, I walked down to the waterfront where all the campers were lined up to do the swim test and I gave her a warm hug and welcome back to camp.  I teased her and asked if she missed her TV.  Without skipping a beat, she opened her arms as if to show off the island and waterfront and exclaimed:  “THIS is my television!”  

I immediately welled up and gave her the biggest hug I could muster.  THIS is my reason for working at the greatest place in the world.  There is no place like camp.

If you haven’t already, please consider sending your child to camp.  It doesn’t have to be at Camp Isola Bella, but can be at any one of the many camps for Deaf and hard of hearing children around the country.  As I mentioned above, it’s an invaluable experience for any child, but more so for those of us in the Deaf and hard of hearing community.

Alyssa Pecorino, M.S.

Questions about sending your child to camp? You can reach me at Alyssa.Pecorino@asd-1817.org

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From Bystander to Believer: My journey as a Hearing Mother

April 17, 2017

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I am a hearing wife of a Deaf man and a hearing mother of four children, three of whom are Deaf. I was born in a hearing family with all hearing siblings. Although I learned a bit of sign language, and even performed a song in sign at my 8th grade graduation, I had never met a deaf person.

When I was fourteen, my sister, who was just two years older then I, was losing her hearing. She saw an audiologist, who gave her hearing aids, but my wise mother knew that there was something more, something better for her. She found a program for the deaf and my sister switched schools, started learning ASL, and using an interpreter. I didn’t want to be left behind! I started learning and my sister would ‘help’ me by not using her hearing aids on weekends and forcing me to sign with her.

Learning ASL led me to involvement in the ASL community; however I was reluctant to become fully involved. In college, I was a little bit involved with the deaf community and decided that I wanted to teach deaf children.  I became a huge advocate for Bi-lingual/ Bi-cultural education and looked forward to teaching. In my naivete, I said I believed deaf people could do anything hearing people do. I was convinced that I really believed it too.

In my senior year of college, I met my husband who was the ASL lab instructor. We started dating and just after graduating, married. When he felt moments of discouragement regarding his success in life, I encouraged him. I believed he could do anything he wanted to. . . except run a business of his own. His experience was in construction and that’s where he wanted to start out. Eventually he wanted to do something big that would inspire deaf youth to succeed.

The first few years of marriage were rocky as I finished my degree and started teaching and he ran into difficulties finding a steady job in construction. After much thought, he decided to go back to school, major in history and become a teacher.  I was secretly relieved that the big talk of starting a business had stopped. I knew he would be a wonderful teacher, and he had a passion for that. It would also provide us with a steady income. That’s what I needed.

Our first child was born and I worked full time while my husband attended school. My son was hearing and began signing at six months of age. We were a happy family.

Then, my second son was born deaf. No big deal, I thought. I still thought I believed that deaf children, and deaf adults, could succeed and do whatever they wanted. I had no idea how it (his birth) would shake my beliefs and my marriage.

My mind filled with questions and doubt.

What if he doesn’t want me as his mom because I’m hearing?

What if I don’t know how to teach him to read?

What if he never learns to read above the 4th grade reading level?

What if he says he wants to be a fireman?

How do I best support him?

Should he get hearing aids?

Should I make sure he has speech?

If he can talk, won’t he have a better chance at success in the future?

Only a parent understands the dreams and desires her or she has for her children. Only a parent can understand the gravity of having those dreams crushed. It’s natural for someone who gives birth to a child who is different than herself to grieve. But I was the hearing wife of a Deaf man! The hearing sister of a Deaf adult! The teacher of d/hh children! What was my problem? Didn’t I believe my child could do anything he wanted to?

I realized that as much as I had thought I ‘believed’ in the Deaf individual, it just wasn’t true. As much as I thought I had been truly accepted and enculturated into the Deaf community, I felt alienated. I was only a bystander after all.

After going through the grief and seeing a counselor who understood Deaf culture; making decisions and moving forward as a hearing mom of a Deaf child, I had nagging thoughts. Nagging, negative thoughts that would come to me as my little boy grew. They didn’t disappear as my 3rd child was born: a Deaf girl. In fact, they probably became a little worse.

I remember my son telling me, “I want to be a fireman someday.”  That was a moment when I put on a face without expression and said, “Ok! That’s awesome.” However, inside, my nagging mind was posing questions the whole time: They won’t let him be a fireman! He’s deaf! He can’t hear! How can he become a fireman? You are feeding him false hope! STOP! He also said he wanted to become a policeman or a soldier. I felt all of these jobs were impossible.

It was during this time that my husband began to dream again. He was in his Master’s program and doing a research project on Deaf Culture and History. He wanted to develop a poster that would show the world that Deaf individuals can and DO succeed, in many different careers. He finished that poster, (link “that poster” to www.deafsense.com/store)  featuring 48 deaf individuals in 48 different career pathways. To my amazement I saw on the poster a Deaf fireman, a Deaf police officer, and a Deaf ROTC participant. What? My mind went into shock. It couldn’t be. My husband must be wrong.

So I did my own research. I found that not only was he correct, but that these men weren’t the only ones who were changing the career field for my son. There were 50 documented firemen who were d/hh. There were other d/hh men who were serving on a police force. The ROTC participant is still lobbying to change the laws to where d/hh people could serve in non- combat positions.

At this same time, I began to go through a personal transformation. I began to see that I, with my bystander beliefs, was holding my husband, and my children, back from succeeding. It wasn’t his deafness that was holding him back; it was his insecurities coupled with my insecurities and beliefs that we couldn’t succeed in achieving our dreams.

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The world today teaches us to settle for less than what we might want to achieve. The world says go to school, get a job, settle down, the end. Our hearts, deaf or hearing, tell us differently. They tell us to set our expectations high and go for them through whatever challenges beset us.

The truth is, we all have challenges we must overcome. As parents, as spouses, we have a huge impact on what our loved ones will attempt to achieve in their lives. Will we stand by, allowing ourselves to be bystanders because we are hearing? Will we give into the nagging thoughts and beliefs that life is hard, and that there are only certain jobs a deaf person can do, and our children just won’t be able to achieve their dreams?

Or can we reach into our hearts and find true belief? Can we open our minds to the possibility that others are changing the dynamics in the career world and that what may not have been possible only years before, just might be as our children grow? Can we begin to see that, in reality, it has always been possible?

Can we see that we can become believers? And through believing, inspire those around us to become believers too?

Come follow us at www.deafsense.com where we believe everyone can and should succeed!

Lynell Smith

 

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Karla Giese: My Life in Full Circle

March 22, 2017

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For me, being deaf is a way of life.  I was born hearing, and began losing my hearing as an infant.  My parents couldn’t get a proper diagnosis until I was almost two and then I was fitted with hearing aids.  My parents chose to raise me with an emphasis on spoken language, using speech therapy, hearing aids, and FM systems while being educated in the mainstream setting. My hearing became progressively worse and I became profoundly deaf by the time I was nine years old.

At that point, relying only on auditory information started becoming more and more difficult. By fifth grade, I began learning sign language and using an interpreter, which continued through high school and college.  I went to college and earned my BA in Deaf Education, Elementary Education, and Special Education.  I moved to the Chicago suburbs and began my teaching career working with deaf students who also had emotional & behavioral disorders and I learned a LOT about behavior management. At the same time, I began working in Early Intervention and became credentialed as a Developmental Therapist-Hearing (DTH).  Over the years, I went back to school to get my Masters in Early Childhood Special Education and have taught in a variety of schools including residential, self-contained, resource room, and itinerant services.  I had the opportunity to start moving into more administrative roles in the schools as a Curriculum Coordinator, Assistant to the Principal, and am now Director of Student Support Services in a Montessori School that has an embedded Cued Speech program.  In addition, I am also the Coordinator of CHOICES for Parents, a statewide parent support program for families of deaf and hard of hearing children.  Plus, I’m pursuing my doctorate degree in Special Education with a concentration in Deaf Education.  I am very interested in parent support, early intervention, language acquisition and literacy.

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I married a hearing man and together we have four beautiful children, all hearing.  However, two of them have been involved in the early intervention system and have had IEPs in the mainstream setting.  I feel like I’ve come full circle in my life in that I’ve experienced all educational settings and communication modalities, both professionally and personally.  I also feel like I’ve been on all sides of the table at the IEP, as a student, parent, teacher, advocate, and administrator.  

My personal and professional experiences lead me to the point that I most often emphasize when I work with families of deaf and hard of hearing children: when your needs change, your choices can change too!  Too often, people get stuck on one way to do things.  If something isn’t working, why not explore something new?  If something is working, why not add something new?  Because I can talk, sign, and cue, I have met so many different people and have had my life enriched in so many ways.  I am able to be a part of the hearing world, Deaf community and Cued Speech community.  There is no one size fits all.  There never has been!  What works for your family is what works for you and your child.  Keep an open mind and be willing to explore Sign Language, ASL, spoken language, and Cued Speech options!

 

 

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Veditz: Online Classes for Families with Deaf and Hard of Hearing Children

March 6, 2017

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Born in the City of New York – The Bronx.

I was born hearing and had an ear infection that triggered hearing loss and raised in the city of The Bronx in one-bedroom apartment with just my mother–that has always been my story. I’ve always seen and knew how half of us as New York City residents struggle economically, make ends meet just barely, if at all, and most of us always feel this sharp uncertainty about the future, at least, it was for me growing up. For one, I was born to Deaf parents who moved to America from Puerto Rico. Both families were poor as my father’s side works as the landlord of a project apartment in the South area of the Bronx. My mother’s side is from the military.  Both of my deaf parents met each other at an oral school called “P.S. 47” public school in Manhattan. Both of my parents’ families speak Spanish. Come to think of this… imagine all of the communication, language barrier and not to mention, different cultures all combined in one family when both of my parents married each other. But, after turning one-year-old and my older sister, Jasmine, who is also deaf, at age five, both of my parents separated then eventually divorced. 

 

Life as of the Hard-of-Hearing Child and How I Unconsciously Code-Switch Two Languages and Modalities.

When I lost my hearing at 18 months old due to an ear infection. I had residual hearing that wearing a hearing aid, for me, is like from hearing completely nothing – no sounds to hearing absolutely everything! I embraced hearing and speaking. I loved going to speech classes during my school days. I’d sing like how I recorded my own voice signing in the speech classroom all by myself, now imagine those who really heard me singing across the elementary hallway!

But, when I didn’t want to hear… it was always my advantage, to have the choice to turn off my hearing aid, hear no sound, be completely deaf.  

 

What resource I had growing up as a city young girl, I could call my parents through the Telecommunication Relay Service (TRS), which is actually through the relay operator who would voice and translate in English for my parents via TTY. Also, I remember how almost all the time, I would be called to interpret for my older sister and parents at appointments, restaurants, movie theatres, many more. I also remember how my parents always said the youngest child “hard-of-hearing” and “very, very smart who can speak very well” when introducing me and my older sister to other people (poor my sister of having to grow up being compared to my abilities). So, all my growing years, I have always talked with my voice and sign but little did I know it is what we call “code switching”. I now understand why using both language at the same time is always a challenge because both language have different grammatical functions and rules. Therefore, the influence of speaking values that my deaf parents from their spilled over to how they raised me and my sister. Looking back, it is, indeed quite interesting that I do not see this life experience of an interesting mix of values in both worlds – hearing and deaf, as a bad thing but has become a resource for me in what I can use every day, especially, with my four CODA children and, of course, my love for music, always!

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Love for Music & Discovering ASL/Deaf Culture – Understanding & Navigating Both Worlds.

Since I mentioned my love for music. For me, music has always hold a connection to sound because I can hear, appreciate the sound of music, which grew that inner value for sound the of music. I love to listen to music (over many times), read lyrics to make connections and sign the words without realizing what it means to translate into a conceptually accurate in ASL. I also love to dance!

I knew many songs that were back in 80’s and 90’s, which were songs that are easier to follow compared to our music nowadays. The more I learn about ASL as its own language, I realized it a challenge to translate the actual meaning when signing a song because there are many different ways that depend on meaning. Then, we have to consider how words are interpreted and expressed in order to successfully deliver the same way from one language to another.

During college, I studied to be a Social Worker and the more I learned about my identity, who I really am and how I discovered ASL and Deaf culture through courses and workshops I attended. That alone, opened my eyes to the world of a human being I am. Many cultural and language conflicts in terms of how we use of ASL became a clear structure of how two languages that I equally value has stronger influence with how we bend both cultures into our way of life and because that’s how we all learn to evolve to be who we all are as individuals.  

                        

Professional Journey as a Deaf Educator and Leader.

As soon as I graduated Gallaudet University with my Bachelors in Social Work. I went back to New York City for one year working as the Deaf Service Coordinator at the Bronx Independent Services. I also had a part-time job as a G.E.D. instructor for LaGuardia Community College. That’s when I found my love for teaching, which then I went back to school, studied and received my Masters in Deaf Education. I was also working night shifts as a residential counselor for high school deaf students.  After having my 3 boys in two years as I had a set of twins after my first born being at 20 months old.

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I accepted a position as the Co-Director/ASL Lead Faculty of the ASL/Interpreting Preparation Program in Denver, Colorado. There, I learned so much more about the culture, language, history of our community and how we, the deaf people, are outsiders of the hearing society. I also learned how we all are raised with different backgrounds and education experience that brings the uniqueness even more in the Deaf community that’s within the larger community in the hearing world.

 

During my 5 years living in Texas, I was employed as parent infant program teacher at Texas School for the Deaf in Austin before I landed a Director position with the Gallaudet University Regional Center – Southwest when it first opened and based in Austin Community College. Five years later, I was offered the K-12 Principal position at Colorado School for the Deaf and the Blind in Colorado Springs. After years of teaching and administrating in the education field and do an extensive outreach work at the center, I knew there is still a serious huge gap in the connection of our people, our community and the resources that we must access to but I didn’t have any answer to this huge issue that deeply impacts every deaf individual.

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  Three years ago, during the National Academic Bowl at Gallaudet University, I sat next to Karen Putz. I brought up my concerns about deaf and hard of hearing students who were showing severe delays with language and learning. During our conversation, I remember vividly how Karen was very straightforward about lack of centralized information and resources for parents with deaf children. Karen also mentioned how serious of a problem that is if we (Deaf and Hard of Hearing adults) continue to not be connected to those hearing parents with deaf children, we will continue to have challenges now that 98% of deaf children have hearing parents.

 

In other terms, we must change how we do things. That conversation never left my mind because I already knew and believed that as a huge and serious gap, which impacts many, many deaf children and how they live life and ultimately, become a productive adult that may come to question. It’s the connection. Fast forward. Three years has passed. Karen and I reunited at the Hands and Voice Leadership Conference in Estes Park, Colorado discussing about Veditz, a solution I created for deaf and hard of hearing children and their families! Veditz is the first online, mobile, on-demand and live interactive video chat tutoring platform for the deaf and hearing who wants to learn ASL or are simply visual learners regardless of where they are or what device they’re using – PC, Mac, Chromebook, or Apple iOS or Android smartphone or tablet devices! Deaf students, including, deaf and hearing people can now get tutoring in many subjects (math, science, ASL, and more!) with tutoring delivered in ASL online in your home! Teachers, professionals, students, parents and their children can use Veditz for FREE to find ASL practice partners and then meet up online on Veditz’ secured platform and conduct live video peer-to-peer ASL practice with each other.

 

Also, when a child needs help in Algebra, English writing, ASL or something else, Veditz and our hundreds of tutors are at your service. Since our tutors tutor in ASL, it saves costs on having to hire a tutor and interpreter, plus it maximizes quality of tutoring time. Also, come and learn more about our vision on building a Khan-Academy-like for the Deaf similar to our ASL Math Academy is currently featured on our website for free! When Deaf students want an answer in ASL not just English? Our FREE ASL Math Academy has dozens of videos signed in ASL with English CC on Arithmetic, Pre-Algebra, Algebra, Geometry and more!

 

Embracing Life as a Deaf Mother Raising 4 CODAs

In between my career journey after having my baby boy, Caleb, I was hired as the High School Social Studies teacher at Florida School for the Deaf and Blind in St. Augustine, Florida. I learned the value of student connection as a teacher and implement visual learning instructions. After the double “oops” surprise came on the day of 18-week sonogram, I was told that I was carrying twins! In 2005, we had fraternal twins, Tristan and Sebastian, when Caleb was only 20-month-old where many thought I had triplets! Certainly, at age 25, I was shocked but I embraced raising twins. I have learned so much raising my own twins. Evidently, I had my hands full that I decided to stayed home temporarily to raise 3 young boys before I went back to work.

                                                

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The Impact of Co-Founding Veditz

Leaving the principal job at Colorado School for the Deaf and the Blind was not an easy decision yet best decision as the decision has blindly led me to co-founding Veditz! Like I mentioned, I always knew there is a way to fill such a severe gap of “connecting with others”. I never knew how or what it takes to develop such product because I knew it starts with a person with technology expertise to build a platform.

 

Veditz is going to create an opportunity to break the communication barriers that are often created between the parents and the deaf child. There is no comprehensive program available for learning how to communicate with their deaf child. Veditz is going to provide parents and their deaf children integrated and interactive learning product where is self-paced with practical lessons and activities parents can use as they develop other competences.

 As I briefly shared the evolving human identity that I am today as a deaf, woman, Puerto Rican, single mother of four children. I am fortunate that I have been given through different professional opportunities, to be a counselor, a service provider, a coordinator, a classroom teacher, a program administrator, a school administrator, an outreach/ambassador for a University where I will always use as resources and tools to continue navigate in the hearing world. Now that technology is here and sign language is a visual language, putting both together is what validated my deep desire, passion and understanding what it takes to happen for such product to connect, educate, and empower the world’s deaf community.

 

I am going to be who I am and I will use all tools and resources to live and merge in the hearing world as a deaf adult. My identity has evolved as I was once called “hard-of-hearing” child to simply being deaf. I have and will continue to embrace what it means to be deaf in this world. Most certainly, I will also embrace the gift of being a mother and raising four beautiful hearing children (CODAs).

 

          

 

 

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Matthew Morgan: A Deaf Magician

January 12, 2017

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When Matthew Morgan entered the stage to open his magic permformance, there was no applause. Instead, everyone in the audience raised their hand in the air and wiggled their fingers. He, who is deaf, began the show by pulling four doves from four different silk scarves, and then turn themn into three ducks.

Born on January 17, 1974 in West Allis, Wisconsin, only two miles west of Milwaukee, Matthew Morgan is the only deaf member of his family, which includes his parents and one brother. he grew up in his hometown, and attended the Wisconsin School for the Deaf in Delavan.

His maternal grandfather, Carl Andress (his stage name was Waxie), who at one time worked in a carnival, first introduced some simple magic tricks to him at a very young age. Every time his family and he visited Carl’s home or when he came to visit them, Matt ran to him and begged him to do one or more tricks. He loved watching Carl’s magic shows from time to time. Matt has not forgotten how his jaw hit the floor in astonishment, every time his grandfather pulled a coin out of his ear.

At around the age of six, Matt had to know how his grandfather pulled a coin out of his ear. Carl agreed to teach him all about magic things. From that time on he was fascinated with magic. His grandfather encouraged him to practice as much as he could. Matt very determinedly practiced and practiced tricks in his bedroom.

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One day during practice he confronted a mistake by trulym aking a coin vanish right into his ear. He panicked an thought it must be real magic. He became entirely upset and scared. Crying, he ran to his mother and told her what had happened. She reassured him that it was just a trick. He went back to his room, looked for the coinf or several hours and was still confused. Later he found it on the floor, with a big sigh of relief. He never gave up practicing after that.

Whenever Matt and his brother went to the public library for the Readers’ Club, he always went straight to the section that had magic books on the shelf. he borrowed a lot of magic books from the library and created different new tricks for himself. he still remembers that Christmas Day when he received his first magic kit from his grandfather. He studied and learned more tricks to bring to school to perform for his fellow students and teachers.

When he was eleven years old, a young hearing friend led him to the House of Illusion, a magic shop. He entered the store and fell in love with the place. From then on, he started going there every day. He would watch different people come and go; they were fans, beginners, amateurs, or professional magicians. He became addicted to this magic shop and ended up buying lots of new tricks. As he got older, he attended the Wisconsin Schoolf o the Deaf as a residential student. He came home every weekend and headed straight to the House of Illusion. He never missed a weekend and faithfully did that until he went to college. at that time he was disheartended to learn that the magic shop had to be closed for good. But he still has fond memories of his frequent visits there through his childhood days.

At the age of eleven, Matt gave his first magic performance, in a church for the congregation members. everyone seemed to enjoy it, eh recalls, and the church people gave him $150. He was very surprised with such good pay. He was happy to be able to use the money to add to his inventory of magic tricks and supplies.

When he was sixteen years old, his aunt presented him with a sports coat with his new stage name, “Magic Morgan” sewn on it. It was her idea, and Magic Morgan has been his stage name ever since.

The first animal he ever worked with was his old friend Powder Puff, a white bunny. As a boy, he had gone to the Wisconsin State Fair one day and played a game that was offering a stuffed animal or a live baby bunny as a prize. he won and brought Powder Puff home to his very surprised parents. he started to train Powder Puff to play deaf! It really worked. He deceived his mother and everyone at his shows as he hypnotized his rabbit to lying down “deaf.” Powder Puff grew bigger than a very fat cat–almost fifteen inches in girth and about thirty pounds of pure white fur. She performed with Matt in shows for six years until she passed away of old age. He never found another funny that he couldn’t rain to play dead like old Powder Puff. he tried training four other rabbits. but it never worked. It was very rare to find just he right rabbit flexible enough to work with humans and perform in shows.

While still young, Matt met Ron Fable, himself a famous Houdini straight-jacket escape artist of the 1970s. He often invited Matt to visit his home, and he first showed Matt the Zip Bag. It was an empty bag out of which came the most beautiful glowing white doves. He marveled at this trick and Ron kindly present him with two doves and a zip bag of his own. He also sent Matt home with some variations for the dove trick. Matt greatly appreciated Ron’s tutelage. Ron had watched Matt’s progress in performance since age eleven. Currently, Matt still performs on a regular basis with four or more doves.

When he became fourteen, Matt wrote a letter to Simon J. Carmel, secretary-general of the Society of World Deaf Magicians, with a videotape of himself performing magic. Simon responded with lots of advice on better techniques and changes to make in Matt’s magic routine. For example, in one trick Matt made silk handkerchiefs appear of out of thing air and float to the floor. Simon watched this on Matt’s videotape and clucked at him like a mother hen who is all out of sorts. he said never “throw” silks onto the floor because it looked bad. he caught many of the young Matt’s mistakes and admonished him to practice not to make mistakes and to learn how to cover them up with a  subtle skill on stage. From this point on, Matt practiced a lot until he made no more mistakes and dropped nothing more to the floor.

A few years before he graduated from high school at the Wisconsin School for the Deaf (W. S. D.), he attended a warm-up summer school for newly-enrolled and transferred students int he schools kindergarten-twelfth grade program. One day Matt decided to give a little impromptu show for a few young students and a teacher. He made a one dollar bill vanish before their eyes. They wanted him to show this feat to other young students and teachers. Soon the word spread that they had a young deaf magician on their hands. Later he was invited to join the Sing Song Dance Troupe on their fall/winter/spring show tour. During intermissions, Matt appeared on stage and performed with his doves. He was a hit.

After his graduation from the W.S. D. in the spring of 1992, he went to a college for a while with an undeclared major. In his heart, he knew he loved his work in the community as a magician and performer, so he decided to leave college and pursue magic as a career.

His first big-time out-of-state show took place in New Orleans in 1993. Since then he has been invited to appear throughout the United States and abroad. he has traveled and performed in forty-six states and five foreign countries. He has performed at Milwaukee’s famous Summer Fest many times, at numerous and varied state fairs, as well as at many public libraries, schools and universities, and other public sites.

From the rear of the school auditorium, a superintendent of the Mississippi School for the Deaf who had watched deaf students’ excited faces during Matt’s magic show, exclaimed, “This is an opportunity not only for the kids to learn, but also to set goals for life. Matt’s performances say; ‘You can be an entertainer. You can be in the arts.’ You see how kids’ eyes light up. It’s fun to watch them!”

From 1993 to 2006, Matt participated in diferent antional and internaitonal deaf magicians festivals in diffent states and the European countries of Leipzig, Germany, and Moscow and St. Petersburg, Russia. he won tow grand prix awards and first place awards, respectively.

He is a member of several magic organizations, including the Academy of Magical Arts, Society of American Magicians, international Brotherhood of Magicians, Society of World Deaf Magicians, U.S. Deaf Magicians Society, and the Fellowship of Christian Magicians. Currently he is president of the U. S. Deaf Magicians Society.

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In 2002, when he participated in the World Deaf Magicians Festival in Moscow, Russia, he met and fell in love with a lovely young Russian deaf conjuress, Liliana. The following year he married and brought her to the U.S. Now they have two hearing children–a son, Elijah and a daughter, Samantha.

magic morgan family

His favorite magic categories are dove and ducks acts, illusions, and rope tricks.

He looks up to his role models in magic: Lance Burton, Dough Henning, and Kevin James, the celebrated world magicians who have inspired and gradually shaped his future career as conjurer in spite of his deafness.

Matthew “Magic” Morgan combines the arts of Illusion, Close-Up Magic, and comedy Magic, along with live animals He uses his unique blend of humor and mime to thrill any audience.

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Update:

Matthew and Liliana own the Little Magic Theater, which will be opening in February at 231 Cook Street in Lake Geneva, Wisconsin.

Theater Opening in Lake Geneva

The post above is reprinted with permission from Simon J. Carmel.  Silent Magic: Biographies of [59] Deaf Magicians in the United States from the 19th to 21st Centuries.  Eustis, Florida: SPS Publications.  2008: 101-103.

To purchase Simon’s books here:

Silent Magic

Invisible Magic

Dr. Simon J. Carmel is often considered as a “modern Renaissance man,” due to his many diverse interests and skills.  He is a writer, professor, physicist, cultural anthropologist, folklorist, editor, illustrator, linguist, astronomer, self-publisher, polyglot, world traveler, athletic and other related roles for Summer and Winter Deaflympics, storyteller, actor, international community leader, life-time magician as well as magic lecturer and workshop presenter, ski racer, instructor and patroller, miniature-kite flyer, Deaf Holocaust researcher and lecturer, Sukodu enthusiast, and 1994 U.S. Fulbright scholar/lecturer in Moscow, Russia in six months.  He was a secretary-general of the Society of World Deaf Magicians (1990-2013).  Currently, he is president of a hearing monthly magic club (Assembly #274 of the Society of American Magicians) in Boca Raton, Florida.   Dr. Carmel retired from teaching at the National Technical Institute for the Deaf at Rochester Institute of Technology in Rochester, New York but being enlightened he continues to write articles and books in different areas today.  He resides in West Palm Beach, Florida.   

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Rhonda Bergsma: And This Was the Easy Part

December 22, 2016

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It was a frosty morning that April in 1982, the middle of the month– you’d think it would be warming up here in the Pacific Northwest. But maybe it was my nerves that was sending chills thru my body. We arrived at the Hospital early in the morning to get my labor started. This was my third baby and both previous births were not easy.  I was a bit nervous.

All settled in and ready to go, here we go , one more time, I can do it. This was me self-talking my way thru this ordeal called giving birth. The nurse came in to hook up the drug that would get my labor going, a must since my “water” broke the day before. In those days most people never knew if they were having a boy or girl, but then it really didn’t matter to us since this baby would have a brother who was 5 years older and a sister who was 3 1/2 years older.

To fast forward over all the gory details, labor was extremely hard but not too long, about 8 hours from start to finish. After much struggle, baby boy Bergsma was born. I noticed that all the doctors jumped up and looked concern at the moment of birth. I was so exhausted I could barely whisper “what’s wrong?”

“Nothing,” said the doctor.

But I noticed the umbilical cord was tightly wrapped around the baby’s neck and he was not breathing. He looked very pale and limp, dead-like really. After all that work, was he even alive?  It seemed like an hour went by but I’m quite sure it was only 20 seconds when I heard a wonderful newborn cry.

Whew.

As I looked over at him, he was nice size–I thought, maybe 9 pounds.

I was close he was 8lbs 14 oz and doing pretty well by now. Andy and I were ready to introduce Mitchel Kent Bergsma.
At home, Mitch was spoiled by his sister who loved to sit and hold him. He was a very good baby.  I didn’t know what a good baby was like since both his older brother Tyler and sister Tandi were always crying. They cried so much I didn’t know if I could handle another baby who cried. The first week we are doing good, no crying, and on we went , no crying.

I can’t remember exactly when I took Mitch to the doctor in concern. I laid baby Mitchie on the table and said, “There. Take a look at him, something must be wrong.”

Dr Johnson, our kids’ pediatrician, looked at the baby and said, “What’s wrong?

I told him it’s been months and I’ve not heard him cry yet, so something must be wrong with him. The doctor took the baby and checked him out thoroughly. He turned to me and said, “Well, I’m not sure what to tell you.”

I knew it, I thought, something is wrong!

“I think you have a good baby this time” and then he smiled.

I think I actually cried, never had I actually enjoyed the newborn stage of my other two babies because they cried all day. At this point I don’t actually believe it to be true but I went home and told my husband what the doctor said.
Baby Mitchie was such a good baby that he would sleep 12 hours at night and take a couple very long naps during the day. When he was awake he was always happy. He seemed a bit different though and I chalked it up to being such a good baby. And remember, we had never experienced this up till now.  He was extremely visual, he would watch and copy facial expressions, if you smiled big at him he would do the same back to you with his two huge dimples.

As he lay in the little seat on the table he made such a loud noise that we all covered our ears. It was a weird sound coming out of a small baby I thought. But I had a good baby this time and that’s what they are like I  guess. Looking back, I now know different but at the time, that’s what I thought.
Baby Mitchie was a very huggable baby, so lovable and very happy, always smiling. I can’t really ever say I remember him crabby or crying. When he was around 8 months old when I carried him in my arms he would always put his hand on my throat when I would talk. He did such cute things, so different from his brother and sister.
One time we left him with my sister and her family when he was around 15 months old.  It was over the Fourth of July and they took him to a fireworks show. My sister mentioned that he sat the whole time with his eyes shut and seemed scared. It seemed that whenever he was scared or not sure of what was happening he would just shut down and close his eyes. Months later we know why he behaved that way, but it seemed odd at the time.

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Months went by, he was still a good baby, but now I’m noticing that he seems to look me in the face and follow my expression but doesn’t really respond to anything I say to him. If I would say “Daddy’s home” and by this close to a year old he should understand some of what I’m saying and respond to me. Sometime he wouldn’t even look at me when I’d talk to him. Again I thought was he just good-natured or a bit odd? Actually I hate to say this but I did think at one point that maybe he just wasn’t very bright.

It was time for his 9 month check up. One thing I really liked about Dr David Johnson was that he never rushed thru the visit, he would sit and listen to any concerns I had. He didn’t disappoint this time either. The doctor asked how everything was going, I hesitated to say this, but I had to get my concern out

“I think maybe this baby is not very smart.”

Doctor J. sat down next to me and said   “Well, tell me about it, why do you say that?”

I went on to tell him how the baby ignored me when I was trying to get his attention or how he didn’t respond to me correctly.

The doctor thought for a few minutes, and said, “Maybe he doesn’t hear you.”

Doesn’t hear me I thought? What, everyone hears, especially babies. After some thought I said, “Okay, then maybe he needs tubes in his ears, I hear that fixes most babies ear problems?”

“Well…” The doctor looked through his files.  “He hasn’t had any ear infections. So that’s not the problem.”

My mind was running wild.  What!? Doesn’t hear me! What, everyone hears!  What’s happening here?  The doctor said to go home, talk to my husband Andy, think about it and come back in a few months for the next check up and we’ll see what we think then.

As I am driving home, I can’t stop thinking about it and it is starting to come together.  After talking it through with Mitch’s dad, it didn’t take long for us to realize that its possible that Mitch doesn’t hear. I am thinking of all the things that were different: the strange noises he made, so loud we covered our ears and he made weird little noises in his throat, and always focusing on our faces.

I put me hand on my own throat, as Mitch always did, then made a sound.  Oh man, it hit me, he was feeling my voice!  Now I get it, he would feel my voice and then look me in the face. He liked the vibration in my throat. He knew something was happening, he was a smart baby, so very smart, really!  At such a young age he was already adapting! I think he was figuring out his surroundings in his own way and learning to deal with them.
That night, Andy and I were going over all the details of this baby’s short life so far and all the ways and funny things he did differently than the other two kids. We knew that night, we might have a deaf baby. We bonded together and decided that we would find out everything we could so we would know how to help this truly delightful baby.
I can look back today and say we never had the dreaded “why us” thoughts. We had hard times and a new path to fight through but seldom a pity us syndrome. We thanked God for that first wonderful year of Mitch’s life without the wonder of something being wrong.
And this was the easy part….

Half Full or Half Empty? 

Of course there were times we wanted to have a pity-party about having a deaf child. Not often, but it did happen. The sadness of something that never will be, things that we love that he will never have the opportunity to hear, like music, birds chirping. Things, I thought at the time, he would never be able to do; drive a car, go into a store alone and function alone in this big world. The dangers are everywhere for a deaf child. I didn’t really know any deaf kids or families for that matter so this whole deal was new to us. We had no knowledge or experience; what we should or shouldn’t do. But then it’s that way with every parent, but at least your family can guide you along. This was a whole new world for us and we were going to just have to “wing it.”

Luckily we had a very happy child, he only knows his life as it is; not as it could have been.

When Mitch was around 6 years old. our family went camping at a Washington State Park. That summer they had a few ponies for the kids to ride. We rented a pony for the kids. Mitch’s brother  Tyler and sister Tandi didn’t want to ride one, but Mitch sure did. He climbed up and of course they only let you ride it in a circle with the owner holding tight. Mitch loved every minute of it!

Then this little girl and her mom came up to ride a pony. The girl was blind and as they put her in the saddle, her mom described the pony to her. She told her the pony was black and guided her hand around his mane and head as she petted him. The mom was really good with her. We stood back in awe, as the complete opposite was happening right before us from what were experiencing with Mitch.

On one pony there was a deaf child and the other pony was a blind child; who has more of disadvantage?

Mitch couldn’t hear the clip clop of the hooves, the sounds the pony makes; snorts, whining, the owner talking to the pony. But he could see the color, he knew what black was and what the horse looked like, how tall it was, the coarseness of its hair as it flew up in the wind, the fullness of its mane, its big beautiful eyes and eyelashes. I don’t remember her name, but this little girl could hear the sounds; the snorts, the whining, the clip clop, the owner as she guided the pony around the circle. But she has no idea that the color black is very dark, what the actual animal looks like, where she was riding or who is even guiding her. She must have so much trust in those around her.

We told Mitch the little girl couldn’t see, and her mom told her  daughter  there was a little boy on the other pony that couldn’t hear. She could hear us talk but not see us sign to Mitch. Her mom explained how we used our hands to talk to him. Mitch was fascinated by her and the fact she couldn’t see and wondered why. And she was just as fascinated about him. He just couldn’t imagine not seeing, and she couldn’t imagine not hearing. They both asked why the other couldn’t hear or see.

It was an experience I will never forget; who was better off, who has the advantage? I’m sure each thought they were the one better off. As most of us enjoy both  sight and sound, our glass is half full, is theirs also half  full or is it half empty. If you asked each one of them today they would probably say they are the lucky one. She was so happy to hear her mom’s voice and the noises around her and Mitch was really happy he could see the things around him.

One day, Mitch told his dad he wanted to play hockey. He was around 10 years old at the time.

“Hockey!” we said. “Why? Why would you want to do that?”

But Mitch was very insistent, so  Mitch’s dad and uncle George took him to a Canucks game in Canada one day. Mitch came home even more excited to play. We signed him up at the local arena, bought all his gear. Then we realized that he has never been on the ice, what if he hates it or can’t skate? Too late now, we are $500 deep into this thing. He is playing even if he hates it.

Well, on his first day on the ice, he came to me and said, “Mom, you can’t know the feeling, its like floating!” He was hooked. He took to skating like he’d done it for years. I think he played for 6 years then it became a whole different game, more serious.

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By this time, Mitch was more interested in water sports. I always say he went from solid to liquid; ice to water. One of his high school friends had a wakeboard boat  and Mitch would go every weekend. He found a new love in this sport. He did seem to excel at this sport too. He would go on to be very skilled on the water, but in Washington the summers are short and only a couple of months of warm enough weather.Then his friend and family moved back to Colorado.

When Mitch was around 20 he decided to move to Colorado to live with his friend and his family so he could get away from our small town and get back on the wakeboard. I didn’t think he would actually do it as he had never driven a car to the next town let alone across the country. And now he was talking about driving his car and pulling a U-Haul trailer with all his motorcycles in it across  5 states to Colorado. He must be nuts!

The night before he left, I was in absolute disbelief and utter stock. I cried like a baby, worried myself absolutely sick, literally shook with fear and really thought I would never see him again. Had we prepared him enough for the world?  The things he might come in contact with were too much for me to bear. What if he gets lost, or an accident? How can I stop him from going?

Mitch was not afraid. He was totally prepared, with his laptop in the car with his journey all mapped out and every stop tagged. He knew what he was doing and where he was going and why. I was forced to trust him at this point and let go. My husband Andy didn’t seem to have the reservations and fears that I did. He assured me that he would be fine.

Well morning came, I had cried all night.  Mitch loaded up his car and drove away with me filling a river with tears. He said to me, as he stood in the driveway, “Do you want me to stay here forever or go live my life?”

(I have to say this is the only time that I tried to use the “deaf card.”) “Mitch! Did you forget you’re deaf?”

This sent him in a laughing fit and he assured me that he would be fine, and that I can stay in constant contact with him along the way. Which I did.

(Mitch took up competition and became a wakeboard pro. Check out his skills:

A YouTube Star is Born

Today, as I look back on this, I can be so thankful that his glass was half full and that Mitch was willing to step outside the safe box, go explore the world. He was full of life and wanted to experience so many things and adventures away from the safety net of home. But at that time I gained a few gray hairs and shed a bucket of tears. My husband would remind me that’s how we raised him and not to try to hold him back now. But at that moment, I sure regretted the independence we instilled in him.

Mitch started creating YouTube videos and all of a sudden, he attracted a large audience.  Mitch’s success on YouTube and notoriety around the world really gave him even more richness in his life. For some reason it seems to be “cool” that he is deaf. Would he have had the appeal if he was hearing? He found an outlet in this digital world to really explore his talents in videography, bring it to the world and actually make money doing it. We bought him a video camera for high school graduation because he loved photography. We had no idea he had the “eye”. He told me he did when he was younger but I didn’t really believe him.  So many doors have opened for him because he has explored this avenue.

When I traveled to Brussels with Mitch in the summer of 2014, while he was there producing a commercial, just the sounds of the languages around me were fascinating. One day at lunchtime we decided to go to the “Grand Place”  at an outside cafe. I wanted to sit next to this park-like spot because this young lady was there playing a song beautifully by Andrea Bocelli on her flute. When Bocelli sings it just makes me stop everything and listen, it romantically represents Europe to me for some reason.   Mitch asked me why I wanted to sit there and I responded that the music was so beautiful that I wanted to listen to it. He looked at me and shook his head like he understood but really he has no idea how music can speak to your soul. When I returned to work after that trip I teared up as I was telling one of my co-workers how the music that day really touched me, and how much I love music, the sad fact that he just doesn’t get the same enjoyment from it and never will. But in respect to that; sign language is a feast for the eyes, it lays out the story and transcends you into the mood and right into the song. I have a hard time watching someone signing a song and not tearing up. The movements just become the words and they paint the story so beautifully. There are times when I can’t help but sign when listening to a song, to me a song is complete when the beauty of sign language is added. A beautiful replacement for sound.

Mitch is definitely living his life to the fullest. He is now married. He still has a long list of countries to visit and things to experience  but he has done more to date than I ever expected from him in his whole life.  My view of success for a deaf child in adulthood was a job, an apartment, a car and hopefully someone to love. To date he can check all those boxes…and more.

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How do we make sure our deaf kids view the glass as half-full? I don’t have any great answers but it seems to me that experiences are what fill up that glass. We were lucky that we had a child who wanted to explore and experience life to its fullest. I think this is to be encouraged–not just our deaf kids–but all kids.

 

Rhonda Bergsma

Follow her on her blog, Deaf-initely Mitch

 

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George Jenkins, Deaf Designer and Engineer

November 21, 2016

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I became deaf at the age of seven from a number of illnesses that caused nerve deafness which could not be repaired. My hearing is profound deaf. When I went back to the “hearing” class after becoming deaf, I daydreamed because I could not understand a word.

When my family found out that I was deaf from the doctor, some of them cried. The only way I could get ahead in the education is to be outfitted with a hearing aid. We did not have the funds to get the aids. The Indianapolis school for the deaf offered me free aids, so we made the trip there. My mother did not like the idea of sending her son to school there as we lived in Fort Wayne.

Fortunately, Fort Wayne had a class for deaf and hard of hearing students. I was able to get my education through the mainstream. I had to lip read the teachers, take notes, and homework assignments to graduate with a B average.

After fifteen years as a factory worker in a number of business. I decided to gain a college education with an AS degree in Mechanical Engineering and BS in Accounting. I had interpreters throughout the college courses. I also took courses online. 

It was not easy to get an engineer job as a deaf person. I had to find managers who were willing to work with me. I have been an engineer for the last 20 years. My accounting degree helped me to understand how the business functions in the financial department.

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My present day engineering job is to design vehicle seat frames, power and hand jacks for trailers and RV. It is a blessing that my employer provides a videophone to call clients, employees, and suppliers. I wish companies would provide interpreters for meetings at my workplace. My church provides interpreters on the second and fourth Sundays.

An awesome project I have worked on was from one of my former employers, designing everything related to a Class A motorhome, from the chassis to the roof. Another project I worked on with a previous employer was designing robot-operated plate punching machinery.  Two patents are pending for my designs in manufacturing. I also have a woodworking home business; the best project I’ve ever completed is creating a folding game case. 

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Lip reading is not the type of communication for me. I prefer sign language for speaker translation and talking. Even with my hearing wife, I sometimes misunderstand her and she cannot understand some words I say. She has no interest in learning signs so I continue to try my best to lipread.

Each deaf person has his or her own talent to excel in this country.  I believe that higher education will grant better benefits as we have to work twice harder to excel in the employment department.

The greatest challenge for me as an intelligent deaf person is to work my way up to become CEO or CFO of a major corporation. I am willing to complete my MBA if funds are available.

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