Archive for the ‘Deaf & HH Adults’ Category
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.
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!
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.
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!
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!
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.
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.
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.
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).
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.
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.
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.
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.
Matthew and Liliana own the Little Magic Theater, which will be opening in February at 231 Cook Street in Lake Geneva, Wisconsin.
The post above is reprinted with permission from Simon J. Carmel. Silent Magic: Biographies of  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:
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.
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.
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.
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.
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 enoughhis 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.
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.
Follow her on her blog, Deaf-initely Mitch
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.
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.
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.
My name is David Cluff and I am deaf, and this is my story.
In March of 1993 I was born with a virus called Cytomegalovirus, which is known as CMV. This virus has many side effects and doctors thought I might not survive. I was born pre-mature and despite what doctors initially thought, I was born healthy. I was welcomed by loving parents and would eventually be the oldest of four children.
My childhood was not like most kids growing up. At age three I was diagnosed with hearing loss and fitted with my first set of hearing aids. At age six, I woke up one morning and any hearing I had the night before was completely gone. Just like that, something that I cherished so much was gone. My world had changed in a matter of moments. I felt broken, unsure, and I missed the way things used to be.
Shortly after losing all my hearing, I was given the option to receive a Cochlear Implant. After lots of prayers and help from family, friends and people I hardly knew, I got my first Cochlear Implant in October of 1999. Shortly after recovery, I got the Cochlear Implant turned on–and very quickly, my ability to hear my parents, my own footsteps and the water running was restored.
Did that magically make everything perfect again?
Rather, it was the beginning of a journey of faith as I re-learned to hear the world around me. It was like a matching game of “what sound goes with what.” As the years went by and after a major move to the great city of St. Louis, Missouri, I was given another opportunity to receive a second Cochlear Implant for my left ear. It was my dream to hear with two ears again. I was once again faced with the challenge of re-learning to hear. Hearing with two ears is not the same as hearing with one.
Back in 2007, I was working closely with my surgeon, Dr. Hullar, on a five-year research study. He became a good friend and a great mentor to me. During one of the meetings in his lab he overheard my parents and I brainstorming on what project I should do for my Eagle Scout rank in Boy Scouts (BSA). Dr. Hullar knew my background in computers and said, “Why not build a website for deaf teens like yourself?” It was like a huge light bulb went off and I found something to be passionate about. Before I could actually start the project I had to get it approved by the BSA board. I was nervous as I really wanted to do this project no matter what and being able to do it as my Eagle Scout Project would make it more meaningful. The board members approved the project.
Today, I am happily married to my best friend and a father to an energetic 8-month-old boy. Even as an adult, I am still learning to hear the world around me and cherish every moment I can. I have come to realize that life isn’t supposed to be perfect; rather, it is like a puzzle. When you get a puzzle in a box or bag you now have the choice to either put the puzzle together or let it sit on the shelf. My challenges came like a bag of puzzle pieces. So many pieces that it often felt like it would take years to put each one together to match the master photo. Yet, I had a choice. Am I going to let it sit on the shelf and let my challenges hold me back or am I going to do my best to put the puzzle together? Once completed you see the whole picture; but notice how there are lines going all over the place from each puzzle piece. It is not seamless at all, but it is also not broken. That is like life. We are given pieces of a puzzle and with time, we come to see the masterpiece.
My master puzzle is still in the works and I am seeing parts of it coming together–and that is when I know that everything is all right and that everything will work out.
Read more about David’s story, visit: www.davidbcluff.com
My husband and I were a little late leaving the house to head to a friend’s house to watch the Super Bowl game. I was a little heavy on the pedal as I didn’t want to miss Marlee Matlin signing the National Anthem at the start of the game. I just prayed no cops would pull me over.
We arrived just as Lady Gaga took to the stage and the first notes of the song began. My husband and I joined our friends as we gathered around the TV and waited in anticipation to see Marlee sign. The camera panned out to show Lady Gaga standing next to the piano, alone.
“Wait a minute, where’s Marlee?” I asked.
“Hopefully they’ll show her.”
So we sat and we watched.
“Ah, there she is!”
The camera zoomed in on Marlee.
For four seconds.
And we never saw her again.
Well, no, that’s not true. If you squinted and looked a couple feet away from the stage during an overhead pan out, you could see Marlee’s arms moving.
As Lady Gaga belted out the last line, the rest of us looked at each other, stunned.
“Marlee should have been on that stage,” someone said.
Yes, she should have.
This is the third time Marlee has signed the National Anthem at a Super Bowl. In 1993, she shared the stage with Garth Brooks. She shared the stage because Garth specifically wanted her up there with him. Garth’s decision sent a powerful message to millions–he wanted his music visually accessible and he wanted Marlee signing next to him.
Garth Brooks and Marlee Matlin: National Anthem
As it should be.
Yes, I know star performers would rather have the spotlight, but in this day and age, could we possibly shift the paradigm a bit–one that is more inclusive?
We had missed the earlier announcement from NAD that CBS Sports would also live-stream Marlee Matlin’s entire performance online as an alternative viewing source. But even if we had streamed it alongside the TV, the experience would not be the same as watching Marlee on the same stage on TV. Heck, most of us would have been happy to just have Marlee on a split-screen at the very least. Thankfully, Marlee’s performance was shown on the Jumbotron: Marlee Matlin Signs the National Anthem.
I must say, long after the Super Bowl ended, I couldn’t shake the disappointment I felt. I thought about my three deaf and hard of hearing kids–and all the deaf and hard of hearing children of families all over the world–how many more years will it take before we truly equalize the playing field?
Marlee should have been on that stage.
Co-Coordinator of Deaf and Hard of Hearing Infusion
Mom to Dave, Ren, and Steven
Rachel Kolb is a Stanford graduate and Rhodes scholar who is currently pursuing a PhD in English literature at Emory University in Atlanta, GA. Rachel was born profoundly deaf to hearing parents and grew up bilingual, using both sign language and spoken English. In this guest blog post, Rachel and her parents, Irene and Bill Kolb, give their respective perspectives on how their family navigated the complexities of communication, education, and personal development, especially during the early years of Rachel’s life.
Q: Briefly describe your family’s journey with deafness and with communication. How did you, as parents or as a family, make the decisions you did?
Irene: The day after we received Rachel’s diagnosis of having a bilateral sensorineural hearing loss, we went to the main library and checked out every book available on sign language and deafness. I learned that the biggest window of opportunity for language acquisition is from birth to three years. We started using signs that same day and within a few months, Rachel was communicating to us with baby signs.
This was the year that cochlear implants were approved for children by the FDA and we were told she was a candidate. We did not know if Rachel would grow up to self-identify as Deaf. We chose not to pursue cochlear implant surgery for her because we were sensitive to the message it may send, that she was not okay being deaf. The most profound book I read was Deaf Like Me. With that book, we came to the early realization that Rachel may never learn to hear or speak, even with a cochlear implant, but we could learn to sign. And who wouldn’t want to have open communication with their child? The journey continued to unfold, but we didn’t really know where it would lead or how we would get there.
We as parents continually learned new things and let Rachel try new things. We enabled Rachel’s interests and passions, and we made educational decisions on Rachel’s behalf. That’s what parents do: set the path. We chose to send her to a preschool for the deaf and then mainstream her with an interpreter in elementary school. She attended a private school, with an interpreter and as the only deaf student, from sixth through twelfth grade. We never considered sending her to a residential deaf school because we felt children need to live with their families. Rachel being deaf is not more heavily weighted than her identity of being part of our family. Going to college was simply an accepted family conviction, not an option or a mere possibility. By that time, it was Rachel’s choice on where to apply for college and what she wanted to study. We had set the path; the rest was all up to her.
Bill: We have two lovely girls that we are truly blessed with. I believe Irene is the one who set the path forward for Rachel’s journey. Irene is the one who would read everything available on a topic and then ask me for my input. After that, we would march forward with a new plan. She is a remarkable individual who helped shape not only Rachel’s future but helped me make informed decisions.
Right after Rachel was diagnosed, we were placed into a New Mexico state-sponsored program called Step-Hi. People from this program would visit our home regularly and give us important information and services. The initial visits were very basic, and taught us things such as how to clean ear molds, change hearing aid batteries, and so forth. Then during one visit the individual brought a record that gave me, as a hearing person, an insight to what different levels of hearing loss sounded like. The record repeated a story over and over again, and each time the narrator would drop certain frequencies until the recording lost all frequencies – that is, let me hear what it sounded like to be profoundly deaf. This recording really hit home with me. Going forward, I decided I would learn as much as I could about how to communicate with my precious daughter.
We enrolled in sign language classes that were offered over lunch at our workplace. We went to the local university and enrolled in continued education sign language classes. We obtained as many sign language books and videos as we could and practiced with each other and with Rachel. We also decided we would not only communicate by sign but also with voice. If you were part of the family, signing was not an option. It was a way of life. Written language was also a way of life. We used 3”x5” cards to label most things in the house with their names. We also sat at night and signed (read) books to Rachel. Before long she was reading better and faster than I could, and she soon told me (in not so many words), “Get lost, you’re too slow.”
I believe that if a person is going to be born deaf, this time is much better than any other time in history due to the evolution of assistive devices such as hearing aids, text messages, closed captioning, Skype, and so forth. When Rachel was diagnosed, hearing aids were worn on the chest and the batteries were the size of a car battery – well, not really, but they were enormous. Technology was rapidly changing, which made it hard and expensive to keep up with. But we made an early decision as parents that we would try to keep up with the latest in technologies for the deaf and hard-of-hearing. We investigated and pursued options for hearing aids and other technologies to best meet Rachel’s needs, and I believe that also made a difference.
Rachel: As I’ve gotten older, I have appreciated more and more the effort my parents put into getting the right information and into making decisions on my behalf. Most important, for me, is the decision they made to learn sign language and to enable my bilingual communication access. I have met too many deaf individuals who feel like they cannot communicate with their hearing family members because their family does not sign. Having a family that signed and that worked to provide language access for me gave me a sense of confidence in myself, even when things got challenging. With my family, I was never just deaf; I was a fully contributing member of the family, and my parents’ high expectations enabled me to learn and to succeed in the ways I wanted.
I also appreciate that my parents recognized that it was important for me to have access to the deaf community, even if I was mainstreamed. I went to a deaf camp in Aspen, Colorado every summer for many years (and went for several winters, too). Although most of my friends are (and have always been) hearing, I’ve been able to find and keep in touch with deaf friends from many different places. Trying to be involved in both deaf and hearing worlds is not always easy, but I think my parents recognized this early on and tried to give me as many tools and as much access as they could to both.
Q: What was the most important thing you learned along the way?
Irene: I learned and was empowered by the fact that no one, not even the professionals, knows what is best for a particular family or child. Listening to the advice and reading up on how to raise a deaf child was just part of the critical thinking that led us to decisions, and we never felt we had to go along with what one side or the other said. We could make our own decisions, based on our family situation and our values. We certainly chose a different approach than many families, and that is okay. One size does not fit all.
Bill: I learned that family is the most important thing. Through thick and thin, family will always be there for each other. If you put a little effort into something, the rewards will surround you tenfold. I also learned to let my children explore the world and follow their heart. Rachel has mastered her passions through following her desires.
Rachel: I learned how to enable and advocate for myself, definitely not as something that happened overnight but as a result of my parents’ decisions and the expectations they had for me. They made it clear they would always be there for me, but also made it clear that there were some things I could only do or decide for myself. Learning how to take control over my own decisions and become my own best advocate has been a process that has taken years, but thanks to my family’s involvement I feel like I’ve gotten there.
Q: Were there any parts of the journey where you disagreed about one thing or another? What parts were the most challenging?
Irene: I can’t think of a time when we disagreed. I do think that at times Rachel wondered why we chose a mainstream situation instead of putting her into a school with other deaf students. A very challenging aspect for me was the grief I felt. It’s not that I didn’t love and appreciate Rachel. Having a deaf child was not what I had expected. A new, difficult situation would arise for Rachel, and I would grieve. Bill helped me realize that not every difficult situation was related to her deafness. Over time grief cropped up less and less, but it was a very tough emotion to process, especially at the beginning. Bill and I usually took turns being in a grief funk and luckily it was not often that we were in a funk at the same time. The emotional toll of having a deaf or other special needs child is something I don’t think people talk about enough, or one that the professionals appreciate from a personal standpoint.
Bill: I also can’t think of a situation where we disagreed. I think the most challenging aspect for me was being concerned about Rachel’s emotional wellbeing. When she was a young child we would attend social gatherings where all the other kids would be playing and talking. Rachel would end up in an isolated part of the house reading a book. This just wrenched my heart and there was nothing we could do about the situation. Nothing could be said or done that would make others accept and include her in their games and time together. When faced with groups of people, we would try to sign or at a minimum explain what was happening, but often we failed to keep Rachel current with the situation. I am not sure what I would change or how I could make it better for her if I had to do it again. Sometimes we would visit deaf individuals to give her the opportunities to be with other deaf people, but that then put me in a situation where I often could not understand the conversations.
Rachel: I’ve come across stories of deaf and hard-of-hearing people who resent the decisions (especially communication-related decisions) their parents made on their behalf. I don’t feel like this has happened to me, maybe because I’ve never felt like my parents dropped me in completely over my head, or did not understand the repercussions of their decisions, or did not empathize with what I was going through. Some things along the way, such as being mainstreamed or going to speech therapy, were certainly frustrating and difficult. I’ll be honest, I did not always enjoy being surrounded by hearing peers, many of whom did not make the same effort to communicate with me as my family did. But my parents gave me their full support, and I also was conscious that their choices gave me benefits I would not have gotten otherwise, such as access to an incredible education. Growing up, my family was my refuge: they were the ones who enabled me, who were always there, and who let me be fully myself. I won’t deny that it was very difficult at times to grow up in a hearing world, but with where I am right now I also can’t say I would have changed very many of those tangible decisions, based on the options we had.
Q: Who was your most valuable mentor?
Irene: Rachel’s very first speech language pathologist was very instrumental in helping us through those early days. Beginning at six months old, Rachel started going to speech therapy twice a week for years, and continued going once a week in middle school through high school. I would often talk to the SLP after the sessions. That was therapeutic for me and helped shape my ideas of how to educate a deaf child to function in a hearing world, even though we did not choose the cochlear implant route, which must have seemed odd, especially since this SLP was the director of the cochlear implant program. She supported our choices. And she helped me to formulate the ethos of never putting limits on Rachel just because of her deafness.
Bill: I had several mentors at work and church who guided me with family concerns. There is one individual who was, and still is, inspiring when it came to guidance about deaf life. My friend Roger is a man with a progressive hearing loss who became immersed in the deaf community later in his life, and who offered sign language classes to many people. We often met for coffee on Saturday morning to catch up on life and to support each other. He taught me so much about deafness, deaf culture, and service to others, and not only offered advice but would also lend an ear when needed.
Rachel: I can’t pinpoint one mentor, but I do remember a number of counselors and staff members I met at deaf camp when I was young who gave me a positive image of how to be deaf in the world. I think it’s very important for young deaf and hard-of-hearing children to have access to older deaf role models. I’m still meeting deaf role models in a variety of places as I move into adulthood, and their influence on me is huge. (I say this, even if I would add that I have had many positive hearing role models, too.)
Q: What piece of advice would you most like to give to hearing families with deaf or hard-of-hearing children?
Irene: It’s important to be mindful and intentional about communication with a deaf or hard-of-hearing child. They receive limited incidental learning by overhearing what’s going on around them. So do take time to fill them in, even when it means explaining things that seem like they should be obvious. And be as inclusive as possible so the incidental becomes the intentional.
Bill: Treat them as you would any other family member and include them in everything and anything. Learn as many communication skills as you can, and apply them as early as possible. The first few years of your child’s life are the ones in which they learn the most. And last but most important: love them daily, and it will be rewarded in many ways.
Rachel: Communication is key, and so is being inclusive and intentional. Find out all the information you can, not only from professionals but also from people who have lived it. Engage with a variety of communities and give your child options, based on what works best for that child and for the family. Discover your child’s passions, the things that light his/her imagination on fire, and enable them.
Rachel speaking at a TEDx event:
Rocky Mountain Deaf Theatre’s “Compelling” production of SILENT SALZBURG