Charles Wildbank: Deaf Mural Artist

Karen Putz: I stumbled across Charles Wildbank a few years ago while doing a search for artists who are deaf/hard of hearing. I was completely blown away at Charles’ talent–his paintings look like photographs. What follows is a chat we had via Facebook.

Karen:  First off, I LOVE your talent. Your paintings are amazing. Tell me how you went from a school teacher to doing art full time.

Charles:  I taught for seven years both in Montreal and at Lexington School for the Deaf. I kind of burned out teaching, then made the move to do full-time painting in 1979. In fact, I am teaching a bunch of hearing artists today in Key Largo…this is a rare occurrence.

Karen: So, how did you make that leap?

Charles: I started with displaying art in store windows on Fifth Avenue, followed by doing art festivals, and occasional art galleries locally.

Karen: What was the process in which you were burned out with teaching and realized that art was what you wanted to do?

Charles: I believe and realize now that reality will reflect your current beliefs or become attracted (to those beliefs.) In wishing I was painting full time, perhaps many situations in teaching deteriorated and that convinced me to resign.

Karen: So, you’ve been doing this (art) since 1979–has it become everything you’ve dreamed it would be?

Charles:  Yes…but the dreaming/fulfillment does not finish…more to go.

Karen: What’s next for you?

Charles: I will continue to live in both studios in New York and Florida by season. What’s next is usually kept sealed until ready for release into public.

Karen:  Tell me about being deaf.

Charles: My parents swore I was deaf when I was a year old, but doctors dismissed it. My parents asked around and found out a new school was opening, Mill Neck Manor. My mom volunteered with other parents to carpool us. School was an old manor house, starting with about twelve deaf students from ages two to eight.  I made my first visit to the school to meet my new teacher when I was going on two. Right away, I had my headphones put on and was given voice instruction. All through age five, I relied up gestures since sign language was not in the curriculum.

I enrolled there from ages two to six. I am still in touch with three of those original students to this day.  I began to form words and sentences when I was six. Right then, my parents wanted to switch to a regular school close to home. Mill Neck was about a half hour bus ride then. The carpool eventually got replaced by a fleet of small, yellow school buses.

Going to a hearing school was a big challenge for me. Adjustments were made, such as moving me up to front row in the classroom and pairing me with a hearing student for note taking.

That was when I started to speak in sentences, learning from classmates in the school yard.

Karen:  Did you discover art at a young age?

Charles: Yes, I was in love with pencils and crayons, seeing their transforming power through my little fingers, I could communicate better with any drawing surface! In challenging communication situations, I would resort to drawing to get my point across. As if that was not enough, I taught myself to write.

I craved guests at our home as an outlet to the world. I would beg them to write their name, the entire alphabet, etc. So, I was ready for hearing school by first grade, I guess.

You could say I was the nerd. I finished coloring books in one afternoon, exhausting every piece of paper! So it became obvious to all that I was the young artist.

My parents got me into piano lessons after school. I was impossible, so the teacher begged my parents to reconsider and perhaps get me art lessons–at age nine.

I learned pastels, charcoal, etc.

Sometimes I would miss my deaf classmates. I was lucky to find my way–two miles by bike–to the nearest deaf classmate from Mill Neck. We both did not learn sign until we were teens. We used pantomime, facial expressions, pointing, and lipread awkwardly formed words and names. By the time I was in college, he paid me a visit and taught me some fingerspelling,

Karen: Tell me about high school–what was that like?

Charles: High school was tough. Lots of note taking, and I was getting despondent over grades. Then my parents recruited a full-time tutor on weekends. That helped my (self) esteem tremendously, almost overnight.

Karen: Did you have deaf friends in high school?

Charles: Deaf people are just as bright as others, we just need to interface! Schools with inadequate resources have resulted in many unhappy and alienated students.

I only had those two original classmates from Mill Neck until grad school! Those two classmates paired, eventually got married, and had kids. I connect through Facebook these days.

When I turned 21, I became a teacher of deaf and this resulted in meeting so many new deaf friends.

Karen: Who mentored you in art?

Charles: During my teens, I carpooled with a friend for Saturday classes, drawing in charcoal or pastels with a Japanese woman in Long Island. It involved sketching from still life or photographs. As for portraits, I guess I had to learn on my own.

My first encounter with real art was when my dad drove me to Manhattan to see Raphael’s exhibit at the Metropolitan Museum. I was spellbound… This was when I was fourteen…and my grandmother had the same copy in her home, so I connected immediately.

My grandmother encouraged me as she lived only around the block from me. She drove me to get art supplies and I got my first oils when I was eleven–actually age ten.

Karen:  At what point in your life did you realize that art was your true passion?

Charles: By my fifth year of teaching, I was beginning to regret my career choice and I was missing painting. Two years later, the straw broke on camel’s back and I commenced full-time in 1978.

When I met David Hockney in New York, I was getting envious that I went right ahead and painted his large portrait. That’s when I really felt the passion of art.

I felt as if rocked back and forth on a rough sea…with decisions to make. I was undecided and in anguish. I guess that is what it took to make a solid decision. It was as if it was a great leap between graduation from art school and the art world.

Unusual opportunities presented themselves as reminders–pointing me in my direction when I felt so blind and uncertain.

I did not have mentors. I lived 45 minutes from the art capital of the world then. I really feel it helped to get my feet wet in the real art scene while I was a teacher. I was visiting close friends from art college in Brooklyn, and I was surrounded by the art muse all over again. So 1978 was a big year for my art career–for keeps.

Karen:  What were some of the unusual opportunities that presented? I always say that sometimes going down the “wrong” path leads you to the right one with certainty.

Charles: Yes, indeed. We have to remember that these were pre-internet times–even no fax machines then. I relied on family members to help me get phone messages.  It was a formidable communication obstacle. Otherwise, I headed to the train station to commute to the big city. I observed other art graduates doing shows in Manhattan, so that is what I did–hit the sidewalks and found spaces to hang my art. I asked 5th Avenue shops–meeting with window designers–and it was GO! They immediately took my art on and sales were coming in as I placed my famiy’s phone number int he store window of Bonwit Tellers and Cartier.

Karen: That’s amazing. You simply went big.

Charles: Then I got married that year to a lovely deaf lady. At a most severe illness on my ex-wife’s part, we had to part ways after 25 years of marriage. Right now, I’m in a new relationship with Mary, who is not deaf. We both share an ardent art scene interest.

Karen: Were you always confident in your talent?

Charles: Not always.

Karen: Tell me about that.

Charles: It took years to not take it personally, what the reactions to my art were–always mixed reviews in hyperboles in either direction. This, I realized, is the province of the art world that all artists share.

Karen: That’s true of writers, too.

Charles: Yeah. It reminds me of duality. I find writers a wonderful companion in the arts, both sharing a resonating passion, we cannot do without the other.

Karen: Art speaks differently to each person and not reflective of talent.

Charles: Yes, indeed.

Karen: But it’s hard not to take it personally.

Charles: You tell me… In my advanced years, it is there, but the effects are very slight with the power level of echoes.

Karen: So, it gets better as you become older and wiser, eh?

Charles: It is there, but I learn to ignore and stay focused on passion itself.

Karen: What’s it like to begin a painting…and the middle…and the final stroke?

Charles: The artists seem to go through stages in their sequence, that of emulating the masters, then transcending them, to find the muse is ever elusive. Then the “noise” of the masses is crossed over and the artist best listens to that little voice within more.

Dedication is the real master, it transforms through manhandling the materials with increased skill and confidence. The artist gets past that struggle with the brush and attention is diverted more toward the vision and final creation. The doings become like a blur of near automatic activity…in contrast to what it will become.

Karen: Do you find when you ignore the “voice,” you become off path?

Charles: As of now, I can see any vision and put it into a future space and time, with as best-estimated matching reality…this is the hard part…just seeing the vision in its coherent whole, yet in a vacuum, all inside the head. I must have discarded many ideas and inspirations in the process. Many are daunting…so those real masters out there are really beating the odds against non-existence of a dream, yet manifest it into physical form. I am all dreams and ideas, awake or asleep.

Often what we dream has NO BASIS in reality! This is why some of our creations are met with violent reactions, good or bad. Then over time, it becomes the mundane and taken for granted, with the help of the bombardment of the mention by press and media.

Karen: What separates a good artist from great, or a mere artist from a master?

Charles: It is when wonder is replaced by capital letters in the sky….WONDER. We come from wonder and therefore aspire to offer wonder. It is just amazing when some cease to be awake and let the marvels pass them by! That “wonder of a child” is a wondrous ideal to keep maintained by everyone.

Karen: So true. Many lose the wonder, and go into routine.

Charles: A great artist is a magician, really. Every aspect of the illusion is addressed sufficient to the overwhelming of the audience’s sense. So, good artists have this uncanny ability to “get out of the box” on any given idea. Perspective has to do with this, and with that, the ability to see from outside points of view. This is probably how great art makes it through the centuries, culled through years and years of selection process.

And for myself, history will tell. Ultimately, the artist should be the first to derive satisfaction from the new creation at the point of its manifestation or its hatching–and forget the consequences be what they may–and allow the creations to continue to deliver on their own…as if they are offspring…letting them have their own life.

Karen: I am floored by your art, it as a depth and a richness that truly stands out. Who does your marketing?

Charles: I enjoy relinquishing control the moment I release the art. This perhaps enables me to stay creating. I do all my marketing. I want the art to attract the marketing. This is just me being hard on myself and to this day, I am still of the emotion that the best is yet to come. This is what perhaps gets me going and going.

I tend not to look back at my creations. I enjoy so much of the art at large out there, and this is what I dance to the tune of… I love the company of artists as we seem to have a common understanding of the responsibility we harbor.

Karen: What’s your big dream?

Charles: My dream is like that big carrot dreamt by a small carrot…I naturally expand on this dreaming in ways I could muster, perhaps an ever increasing, expanding scale…it would, of course, involve great form, colors, sensation, sufficient to staisfy me and even those I love.

Like a pencil, our lives are an instrument. Like it or not, we work with what we got and transcend our perceived boundaries just to remind ourselves perhaps we are not what we seem.

Like an hourglass, where in that glass is time, really? At the top, at the pinched middle, or any of those spent grains of sand? It is a recurring dream, that hourglass, so I may make something of it. I think of sand a lot these days…speaking of sand, going to the beach daily just confirms that.

I work in several tiers–small art pieces, some larger pieces, and for later, some big projects that the world has yet to view. But a lot still inside my head!

Karen: If you were to give a piece of advice to someone who has a deep passion, what would you say?

Charles: I would say that passion is largely a self-construction, it is something that requires good self search, especially while making ends meet. This creation at best is allowed to consume the artist and integrate with discipline into all life activities possible, in order to best sustain passion. One has to be willing to face the blows, the mistakes, the trials, the efforts–and they have no price or liability considerations. In other words, best not to weep over lost battles, but to forge on… The great lengths may not count in other’s view, but ultimately, those efforts to unwasted and hopefully get rewarded. It is a road that demand suppression of any notion of regret.

Karen: Have there been times when you struggled and almost gave up to get a “job?”

Charles: Teaching was one of those jobs, Cleaning pools, even! Restaurants, just like all those actors who made it. My greatest mastery in my regard, is the newfound ability to accept the outcome–good or bad–and move on. That is our real sovereignty–integrally whole all the way, not just in thought, but in emotion, and living it. Not caring what others think, or taking it to heart. I would hope this makes my expression of art go uninhibited.

Karen: And it applies to all aspects of life. When we step into our authenticity, there are no boundaries to what we can do.

Charles: I like what you just said!

 

For more information on Charles and to view his gallery: Charles Wildbank

An interview with Charles by Seek the World

 

 

 

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Lisa Weiss: Speaking, Cueing, and Now, Signing

The Cue Sign Movement: Sign Language + Cued Speech = Love

by Lisa Ann Weiss, Esq.

Before you click through to the next thing or toss this aside, please just read the whole thing through.  I am writing this because it is important to me to share my perspective with you.  I promise it will only take a few minutes of your time and it may be important for you or someone you love.

For more than a decade I have shared my deaf story.  Yes.  I have a deaf story, even though I am hearing.  I have a deaf child and this automatically gives me story rights.  I will not entertain any arguments about that.

Most of the time what interests people about my deaf story is that I chose to learn a visual mode of communication that is not sign language.  In 2004 when I realized that my 2 ½ year old child was deaf I read a book called “Choices In Deafness” by Sue Schwartz.   As I have explained almost every time I’ve shared my story, that book was when I first learned that there were choices. Until then I assumed that all deaf people signed.  From the beginning I have always believed in whatever choice works, at any time and in any situation.  What I have learned is that the situations are constantly changing and it is beneficial to have lots of options.

My child is a native cuer because I learned Cued Speech first.   I also chose to give my child cochlear implants and an education in listening and spoken language, so my child uses spoken English.  I have always known that my child would sign at some point and that I would also learn sign.

From my perspective, deaf stories oftentimes involve a lack of connection.  Certainly, that has been my experience.  My family has attended Cued Speech camps since 2005. I am grateful for them.  My whole family appreciates them.  It is one of the few times we feel connected to a larger community and are able to really improve our family’s communication skills.  I have always longed for a larger community.

My high schooler and I attended the first Cue Sign Summit that was held at Gallaudet University in June 2018.  It was intended to broaden the community of people who communicate who use ASL and Cued Speech.  There was instruction in all levels of Cued Speech and ASL, as well as four days of opportunities to interact and learn the latest research and about people’s experiences.  When we arrived, my 16 year old knew slightly more sign than I did, which was essentially none.  There were roughly 60 people at the four day event, all with varying levels of fluency in Cued Speech and ASL.  What I experienced at Cue Sign Summit is a broadening my deaf experience I have been yearning for.  I don’t believe I am the only person who feels this way and I don’t believe it is specific to me being a cuer.

ASL and Cued Speech sitting in a Tree, K-I-S-S-I-N-G.  First comes love.  Then comes connection, understanding, and respect for one another.  Then comes a whole new community of people who are happier, healthier, and united.  Okay.  So I’ve changed the words.  Plus it doesn’t rhyme at all.  But this what I see.  My child has now enrolled at a deaf school where they only teach in ASL.  The people at this school are welcoming my native cuer with their minds and arms wide open.

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Resources for Deaf and Hard of Hearing Mentors, Guides, and Role Models

Resources for Deaf and Hard of Hearing Adults Who Serve Families:

Family Leadership in Language and Learning (FL3)

Deaf and Hard of Hearing Guidelines:

These guidelines are intended to offer suggestions for EHDI systems as to recommended practices in provision of D/HH mentor/guide/role model services to families/children.

http://handsandvoices.org/fl3/fl3-docs/DHH-Guidelines.pdf

Interviews with Deaf and Hard of Hearing Adults and Other Resources:
Families can explore these links with a wealth of diverse perspectives through stories, articles, websites and research on this page.

http://handsandvoices.org/fl3/topics/dhh-involvement/resources.html

The Importance of Families Connecting With Deaf/Hard of Hearing Adults
An interview with Janet Des Georges, Executive Director of Hands & Voices and Karen Putz, Co-Director of Deaf and Hard of Hearing Infusion exploring the idea of meeting a D/HH adult who is different from your child.

http://handsandvoices.org/fl3/topics/dhh-involvement.html

 

Language, Literacy, and Social Development:

When a child is identified as deaf or hard of hearing, surrounding the family with multiple levels of support throughout a child’s journey to language, literacy, and social-emotional development adds to positive outcomes. This section covers websites, research, and resources.
http://handsandvoices.org/fl3/topics/lang-lit-soc.html

Communication Considerations: What Role Can Adults Who Are Deaf or Hard of Hearing Play

Family-to-Family Support
Parents who are just beginning the journey can be supported and learn from parents with lived experiences of the joys and challenges of raising a child who is deaf or hard of hearing. There is something incredibly unique and important in receiving support from other parents and families who have children that are deaf or hard of hearing and have “been there.”
This section covers support opportunities and resources, including links to other parent organizations:
http://handsandvoices.org/fl3/topics/fam-fam-support.html

Hands & Voices Facebook Groups:
D/HH Guides: https://www.facebook.com/groups/DHHGuides/
D/HH Guides, Role Models, and Mentors: https://www.facebook.com/groups/DHHMentorsGuidesRoleModels
Military Families: https://www.facebook.com/groups/HandsVoicesMilitarySupport
D/HH Plus: https://www.facebook.com/groups/deafhardofhearingplus
O.U.R. Group: https://www.facebook.com/groups/HVOurChildren/
Unilateral Hearing Loss: https://www.facebook.com/groups/HVUnilateral

The National Center for Hearing Assessment and Management (NCHAM)
NCHAM has conducted a nationwide survey to gather information about programs that involve D/HH adults as role models, guides and/or Deaf Mentors in the EHDI system and beyond.
For a state-by-state list of D/HH Adult programs:

http://infanthearing.org/dhhadultinvolvement/states/index.html

NCHAM Deaf and Hard of Hearing Adult Involvement Learning Community:
http://infanthearing.org/dhhadultinvolvement/d-hh-learning-community-home.html

Publications Related to Deaf Mentor Programs: https://www.infanthearing.org/webinars/docs/deaf-mentor-summary.pdf

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Scott Smith: D/HH Plus, Just a Little Bit

(By the way, this isn’t an article about how to get your child into a deaf university or any university. It’s about a moment as a parent when you consider the future – the unknown – and your course changes a little bit. A little bit for the better.)

By Scott Smith, Nebraska H&V

My wife or I have been on the Nebraska Chapter’s Board for a few years now. Back in 2016, we decided to go to the Leadership Conference in Estes Park, Colorado. We networked with people from all over the Midwest and from all over the country: parents, deaf adults, medical professionals, and teaching professionals. It was great. They covered all manner of topics from technical updates, to building stronger Chapters, to legislative highlights, to restorative self-care classes, and yes, there were some touching moments that pulled a few tears.

Let me stop a moment and say, if you are reading this, you are likely a member or are supporting Hands & Voices. (Soapbox: On) Consider becoming involved with your local board of directors. These are usually a bunch of cool parents, cool professionals and cool deaf adults that want to help other parents of deaf and hard of hearing children in some of the unique challenges we face from day to day. Someday you will have the opportunity to go to an amazing event like the Leadership Conference. It will have a positive affect on you as a parent. (Soapbox: off).

Disclaimer: I am not cool.

We started this journey when our son was born hard-of-hearing in 2007. Due to trauma during his birth, some of his fine motor skills in his legs, arms, including his finger and hand muscles and some of those in his lips and tongue are affected. Like all of our children, Charlie is a blessing and has changed our lives in wonderful ways. But for Charlie, and even for our other three children, we don’t know what the future holds.

During one of the breaks at the conference I walked through a hall of exhibitors on my way to the snack table. “What is that?” There was a booth for Gallaudet University and the National Technical Institute for the Deaf at the Rochester Institute for Technology was also there. After a few minutes talking to the representatives, I got to thinking about college. I had never thought about college for Charlie. Well, let’s just say we hadn’t spent a ton of time thinking that far ahead. (By the way, this isn’t an article about how to get your child into a deaf university or any university. It’s about a moment as a parent when you consider the future–the unknown–and your course changes a little bit. A little bit for the better.)

Like I said earlier, we don’t know what the future holds for our kids. I’ll be honest; I was more worried about Charlie graduating from high school. On the way home from the conference, I was really in my head. “What can I do? What more can I do?” My wife and I work full time, which sometimes require travel and extra hours. We also have three other children. I am blessed to work for an employer that gave me the opportunity to go from a 40-hour work week to a 32-hour work week. First off, shaving 20% off the family budget was difficult. But it gave me the time to become more familiar with Charlie’s school friends, school staff and curriculum.

A friend was teaching a chess club for third through sixth-graders at Charlie’s school, and asked if I could assist. I know more about Gallaudet than I do about chess, which means “not much”. I said, “Sure. Can Charlie join?” He said yes, and two weeks later, I was helping teach chess and chess-related signs once a week to students in the club. In the spring of 2018, Charlie played in a school chess tournament and had a 2-1-1 record and did pretty well. He wants to play again this year. That probably wouldn’t have happened if we hadn’t thought about working toward college and taking the leap to lower my work hours.

Next year, Charlie transitions from elementary to middle school. Our department of education closed our Nebraska School for the Deaf many years ago. We are faced with various blends of mainstreaming through middle and high school. As parents, we do not feel Charlie will have much success with this approach. So our next big adventure may be obtaining residency in a state that has a school for the deaf. Maybe in six years, I’ll write an article on how to get your Deaf Plus child into college. In the meantime, I look forward to the moments that will change the course of my family’s life a little bit, just like the Leadership Conference did for me. Those moments opened a multitude of doors that have provided experiences for Charlie and me that we never would have had…experiences that make the unknowns ahead less daunting.

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Rosabel Agbayani: The Road We Travel TOGETHER

The road we travel TOGETHER: Our Family Journey

By Rosabel O. Agbayani, MPH

“If you want to change the world, go home and love your family.” -Mother Theresa

Sometimes we think that in order to make change we have to make a lot of noise. What I have learned from my experience of raising my children, and especially raising my deaf child, is that you have to be able to drown out the noise and listen to your heart.

We found out my son was deaf in September 2010. I’m not sure why I was so shocked because after almost six months of testing we finally had an answer. But I still remember that feeling when I heard the words “Your son has a hearing loss.” My heart sank, tears fell, and this overwhelming feeling of shock took over. The Audiologist had many well-meaning things to say. But I felt like I was in the scene of a Charlie Brown cartoon when the adults talking sound like jibberish. All I could focus on was “What was my son’s life going to be like?” “What is our family’s life going to be like?”

We came home from that appointment and I felt defeated. But with a six-month old infant, a teenager, and now a Deaf child, I had no time to feel sorry for myself. So I spent most of my time on the internet looking to find every answer to calm the worries in my head. We asked for second opinions, I went through parent training modules, but there was no place in the internet that reassured me that everything was going to be okay.

Reaching out to family had challenges of its own. Those closest to me felt pity for our circumstance. Pity was not going to help me, so I found myself getting angry with them and frustrated having to explain what I was trying to do for my child.

To further complicate the issue, in my culture and within the community of family, disabilities is not something to be discussed. Filipinos have a tendency not to share, for fear that if others realize our weakness then we, ourselves are perceived as weak and therefore bring shame to a family. So even in my own family I felt lost and out of place.

In fact, we lost a lot of friends and family along the way. Well-meaning individuals who would minimalize his hearing loss, or say things like “Well just get a set of Rosetta Stone and he will learn language like normal.” One of the most hurtful things I witnessed was at a family party when my nephews were playing a game of “Can you hear me now?” They would walk around my son asking him if he could hear them. Because my son is the playful type, he innocently went along with the game while they laughed at his expense. It was then that I realized the true meaning of “You must learn to walk away from the things that no longer serve you.” It was a painful but necessary lesson. Their noise was clouding my vision.

 

The first time I ever felt “normal” again was in February of 2011. We had just fought and won our first battle to get our son into the only non-public oral deaf school in our area (a story I will leave for rainy day). I remember clearly his first day, walking through the gates of Oralingua School for the Deaf in San Marcos, California. We were all welcomed and greeted by mothers who were so excited to see another child admitted to the program. There were only six children at the time and my son made the 7th student at the school.

I finally felt at home with our new community. When our kids were busy learning, the parents (we proudly referred to ourselves as the “Parking Lot Moms”) would gather at the local coffee shop and share our stories, retell how our children were diagnosed, explain how they got to the school, and their journey. With each story I heard, my heart felt at ease. Finally, I met another parent who understood me. I didn’t have to speak but just listen. Every word healed my soul. Till this day, these mothers are like my sisters and our children are like siblings from another mother.

I realized early on how important it was to have this kind of network when you are going through something unique and unfamiliar to you. Parents can benefit when we learn from each other. When we can listen and share the choices we have made with each other. We learn to open our minds to new ways that we can help shape our children’s future.

At the time when my son was diagnosed, I only knew three people who were Deaf. My Uncle (my mother’s youngest brother) who had been deaf since he was an infant, an Uncle who was late deafened as an adult, and a friend I met later in life. I asked so many questions at the time. I wanted to know what their lives were like, what challenges they had to overcome and how they got to be who they were today. Deaf adults have a significant role in our understanding as parents. I learned that they have something I cannot give to my child, an insight to the Deaf experience that was critical for my own understanding.

I especially remember talking to my friend and asking her about her hearing aids and school. I was so focused on the technical aspects and she kindly responded to all of my questions. She shared about her experiences growing up in the United States when her parents found out she was deaf. Her mother sacrificed everything she had, left her husband and their life in the Philippines, and brought her and her sister to the United States so she could have a better life. John Tracy Clinic had an international program at the time and she had the opportunity attend the school. It was then that I started to think that maybe our problems were not necessarily about my son’s hearing (I can never change that), but about giving our deaf child opportunities so that he can be the person he is meant to be.

As a parent of a child with special needs, you go through many cycles of joy, pain, confusion, and brief moments of clarity. Some days you just lose it, it comes with the territory. It doesn’t have to be anything significant that happens but some days are just tough.

I remember one day, it was just like most days. I was carrying my twelve-month old in my arms, dropped off my eldest at high school, and went to the hospital for one of my son’s many appointments. I must have been very exhausted because after one of my son’s back to back appointments I just sat in my car and cried. The emotions I held in my heart just suddenly overwhelmed me. Beaten and broken, I wanted my faith to show me a sign, anything to help me understand why life had to be so hard. I was never angry that my son was deaf but I was frustrated because I didn’t know if what I was doing was ever going to be enough.

Suddenly, my three year old deaf son (who had just learned how to put 2-3 word utterances together) looked at me, wiped the tears from my eyes, and said “Mom, why cry?” His sentiments made me smile. I just gave him a big hug. It was what I needed at just the right time. From that moment on I realized, there was NOTHING wrong with him. He didn’t know any differently that he was different. My answer was there beside me, telling me that I was doing EVERYTHING right. In his beautiful world he didn’t know he was “deaf”. All he cared about was that I loved him. I was the one who was broken and HE was the one who fixed me!

Sometimes we get so focused on taking care of others needs that we fail to tend to our own needs! Our kids need us to take care of ourselves! It is as much a priority as our responsibilities as a parent! When you are on a plane they instruct you to put your own oxygen mask first before you do it for your child. I needed my air so I could breathe and think clearly. Then I could refocus and care for the needs of all of my children.

When I finally stopped feeling sorry for myself, I got myself together, and started focusing on my own needs. It had been six months since I got a haircut and it was one of the first things I did for myself. I forgot how good it felt to feel “normal”. Little by little our lives transformed and we found our “New Norm”. I made it to the gym, spent time with friends, and enjoyed my family time.

It was important for my husband and I to spend time together finding moments of joy with each other, despite the hardships we were experiencing. We squeezed in date nights when we could, even if it meant driving in the car till “The Littles” fell asleep to have ice cream cones together. It’s those sweet moments that I cherish the most.

My husband is a hard worker. He worked full-time to support the family while I was busy managing our family business, taking care of the kids, and driving to appointments. When I needed rest or a moment of sanity he gladly stepped in and did his daddy duties with pride. We spent a lot of time talking to each other as a family, having conversations about everything. We love to travel and we learned from our experiences together.

We knew that if we were going to help our son communicate with the world we needed to learn how to communicate as a family. Because when you have a deaf child, you become a deaf family. As with most families, the diagnosis of having a deaf child changes your life and the dynamics of a family. This was not our weakness, it only made us stronger.

My son’s diagnosis changed me too! I have always been a bookworm and self-proclaimed nerd. So when life settled to a comfortable pace, I went back to school and started online classes to earn a second bachelor’s degree in Communicative Disorders and Deaf Education at Utah State University. I graduated on the Dean’s List in 2013. I always felt lucky that I had the kind of training that most of my fellow classmates didn’t have. Regardless of my degree, I was a parent first. I used my new found knowledge and taught my son how to read and write. I learned to communicate with him and create opportunities for him to learn how to communicate with others. It was exciting to use the tools I learned and see my son’s progress. I was fortunate to have on the job training! This knowledge helped me create better relationships with his educators. I knew that if he was going to meet his goals, as a part of his IEP team, we needed to work together.

When my son was mainstreamed in our home school I decided to take a job as an aide in a Special Education classroom. I worked my way up to becoming a Behavior Intervention Instructional Assistant working with kids on the Autism Spectrum. I also volunteered at the local Children’s Hospital working with kids who were Deaf and Hard of Hearing. I also volunteered briefly for an Audiology office observing Aural Habilitation techniques used for kids with Hearing aids and Cochlear Implants.

My work experiences helped me have a different perspective compared to working with my own child. It helped me understand that professionals have a responsibility to heal, to habilitate, and to provide a service that meets a specific need for our child. But that does not take away from the real learning that comes from home. As a parent, our job is to meet professionals and educators half way. They hold the piece of the puzzle that we need to understand our own journey. It’s our job as parents to put the pieces together in a way that fits best for our family.

As a parent and a “wannabe” professional, I met Auditory Verbal Therapists, ENTs, Speech Pathologists, Occupational Therapists, Reading Specialists, and Deaf Educators and Specialists along the way who gave me different tools to use. I like to think of these moments like a trip to the “Special Needs Home Depot”, you can fill your toolbox with many tools and use it if (and when) the time is right. I filled my head with a lot of information, gave myself the opportunity to fill my toolbox as much as I could. I didn’t want to miss the opportunity of having something fit just right for my family or for the children that I worked with. My advice for new families is to always keep that toolbox open and learn as much as you can! Together with your child you can figure out what works best!

In 2015, I got my first job working on a research project studying outcomes of Deaf and Hard of Hearing Children with Cochlear Implants. Having a better understanding of the CI candidacy process and collecting data from educators helped me understand the many different factors that can influence a child’s ability to succeed academically as well as communicate effectively. The bottom line (as a parent by this time I was NOT surprised) family involvement in their child’s education has a positive correlation to overall success.

Because I was no longer just on the receiving end of services, I gained a newfound appreciation of the fact that we all have different perspectives, but our hearts are in the same place. Professionals, even those who think differently, expect different outcomes, or provide a viewpoint different from ours also want the best for our children. We are more alike than we are different. I often think to myself, “Imagine how much we can accomplish as a group if we focus on the sameness and not differences.” Our children need us to work together.

Togetherness is a concept that speaks to the core of what it was like for me parenting a child who is DHH. It is a re-occuring theme in my life, in our journey as a family, and now for me as a professional. When everything was falling apart, I struggled to keep my heart, my family, and my community together. Some days were better than others and progress was not always perfect or prompt. What gave me hope when times were tough was realizing that along the road, I walked the journey with people (my son, my family, DHH parents, and everyone else that crossed my path) who reminded me that I was not alone.

It seems like a lifetime ago when my son was diagnosed. My son is now 11 years old, entering his last elementary school year in the 5th Grade. He has friends (both hearing and DHH), plays baseball (his favorite positions are 3rd base and catcher), loves Hip-Hop music, and annoying his two siblings. My eldest daughter, a senior at CSUN in the Music Therapy Program and President of the Music Therapy Student Association, hopes to pursue a career helping others with specials needs. My youngest daughter (who is now eight years old and grew up alongside our beautiful journey) has won awards at school for good character, recognized for being kind and having compassion for her fellow students. My husband and I can only look back and think about how far we have come. Married for 10 years and after everything we have been through, we live the truth of that “which does not kill you will only make your stronger”! Our lives have never been without struggle, but we wouldn’t change a thing.

Currently, I work as a Pediatric Clinical Research Coordinator for Rady Children’s Hospital in San Diego, I serve as PTA President for my children’s school and on the Community Advisory Committee for Poway Unified School District. Most importantly, I remain committed to my role working with California Hands & Voices helping to build bridges between parents, professionals, educators, and others in the DHH Community.

Together we grow. While my son was learning how to speak, learn, read, write, communicate; I was learning too! When he struggled, I learned how to help him succeed. While his knowledge of the world around him grew into his identity, his identity defined who I am today. His deafness helped me learn how to listen to my heart and my heart allowed me to follow my passion.

Healing begins when you can find purpose in your pain. What started off as a desperate mom looking for answers has led me on a path where I have combined my real life experiences as a DHH mom with the knowledge of as a Professional. Because of this, I feel a responsibility to share my unique insight with others. Everyone has an important role to play. As Parents, Deaf Children, Deaf Adults, Medical Professionals, Educators, Researchers, and Advocates we all have the power to create a community for DHH Children and their families…TOGETHER.

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Amanda McDonough: They Think I CAN’T, I Know I CAN

They Think I CANT. I Know I CAN.
By: Amanda McDonough (Deaf Advocate, Motivational Speaker, and Author of “Ready to be Heard”)

Like most children, when I was born my parents told me I could become anything I wanted to be. After I was diagnosed with hearing loss, at four years old, I started hearing the word “can’t” a lot. It came from doctors, teacher, adults, kids, family members, and family friends. All of a sudden, the world’s expectations of what I could achieve with my life had decreased seemingly overnight. People seemed to believe that having “hearing loss” had somehow lowered my drive, intelligence, and ability to learn. At first, I believed them. I thought of myself as lesser than my peers. My self-esteem dropped. The social kid I once was started retracting into her self a little bit more with each missed sentence, each confused smile, and each uttering of the word “what?” as I failed again and again to keep up in conversations with my peers.

Every six months, my mother would take me back to the audiologist, who would lead me into that tiny grey metal box of a room and shut me in for my hearing tests. A room that felt more like a prison than anything. Over and over again I would take the same tests, repeat the same words “airplane, baseball, hot dog…” as they faded into oblivion, and chase the impossible beeps with my finger on a buzzer. No matter how hard I tried, no matter how hard I “studied,” each time I failed. I hated the feeling of “failing” more than anything. So, even though I had no control over how well I did in that little grey room, I realized I had 100% control over how I reacted to it, and how I behaved and viewed the world outside of that room. In that moment, I decided to stop being the “victim” of my story and become the “hero.”

I knew in my heart that being hard of hearing didn’t completely define who I was, what I was interested in, or what I was passionate about. Being hard of hearing was something about me, just like having brown hair is something about me. It was a contributing factor to my personality but didn’t need to define every decision and moment of my life.

I started dedicating myself more to my studies. I realized that if I kept the teacher on my “good hearing side,” studied, payed attention in class, asked questions, and read the material I could get A’s. Sure, it looked easier for everyone else, but each “A” on my report card made me feel more powerful and more in control of my own life and destiny. It wasn’t easy, this was back in the early 1990’s when parents of children with hearing loss didn’t have the resources, support, and information they do now. My parents were on their own. Therefore, I didn’t have full access to the language and information being taught to me in my mainstream school, but I had an unstoppable work ethic and had banished any memory or thoughts of the word “can’t” from my mind. I knew “I CAN.”

I ended up becoming a straight A student. Even as my hearing continued to decrease as I grew older, the work ethic I developed as a kid kept my grades and my resolve strong. I had less than 50% of the hearing left in each of my ears in high school and I still managed to graduate 8th in my class.

In college, I finally lost the last of my usable hearing and became undeniably physically deaf. Even though I wasn’t emotionally ready to accept my deafness, I still kept working towards my goal of graduating from college. I obtained real-time captioners in my classes, attended tutoring, and put in hours of work into even my easiest classes.

By 2012, I was 100% deaf in both ears as I walked down the aisle with my head held high during my college graduation to receive the two college degrees I had finished in four short years with a 3.15 GPA.

All because I knew I CAN.

The moral of my story: Never let others tell you what you are capable of. You get to decide your own path. You get to be the hero of your own story. No matter what your obstacles are in life, you CAN.

 

For more information on  Amanda: Ready to Be Heard 

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How a Deaf Mentor Helped Our Family

We brought our boys home from Russia when they were 15 months old.  When they were 22 months old, Mark was diagnosed with severe to profound hearing loss.  He was fitted with hearing aids a month later.  Mark is now a teenager.  I remember feeling completely overwhelmed. We had so many questions; will Mark learn to speak? Will he use sign language? How will he hear the phone? How will we teach him to read?  We had so many questions; And, so few answers.

 

After he was diagnosed, we started early intervention with bi-weekly speech lessons.  Each week we went to speech and we had little progress.  Because we believe that language is vital for toddlers, we began to inquire about sign language. No one could recommend a class or teacher for us. This process continued for about six months with no success and we all became more and more frustrated, especially Mark. No one was able to help us.

 

One day, at a local grocery store, a woman asked me about the cord holding Mark’s hearing aids on.  We began to talk and she informed me her son (who was not hearing impaired) used sign language to communicate because he had no spoken language.  I asked her how/where/who she used to learn sign language.  She gave me a name, Karen, and told me she was a “deaf mentor” and she said we should ask if we could get Karen’s services through early intervention.  We called our early intervention coordinator the next day.

 

Karen came to our house within days.   As it turns out, she is deaf.  Her husband is deaf. Her children are deaf. Finally, someone who could help us.  Someone who was able to teach us how to teach our child to be a successful person in a hearing world.   She came weekly to our home.  She came at all different times and began to teach us sign language. Her philosophy is to get language (any type-spoken or signed) into a child as soon as possible. Without language, children fall behind in every aspect of life.

 

She came when the boys ate lunch. She signed hot dogs, more, milk, cookie, green bean.  Simple words that helped language make sense to Mark.  She came before nap time and read books with us. She taught us the words to “Brown Bear Brown Bear” and “Polar Bear Polar Bear” and other board book favorites.  She would come after naps and play music and sign the words to songs and play instruments and help Mark make the vital connections between things and language.

 

But, she did more than give Mark language. She helped our entire family. She told us about door bells that light up when the bell rings so people who are deaf/hard of hearing know someone is at the door. She told us about alarm clocks that shake instead of buzz.  She taught our family what it is like to live without being able to hear. Honestly, we had never thought of any of this, after all, we can hear.  It is amazing the things we take for granted.

 

In the year that followed, the biggest question our family faced was what type of communication we were going to use.  We were not sure if we were going to use sign language, pursue an oral education, or try to find a total communication school. This decision is hard and it caused emotional grief for our family.  As usual, Karen was there for us when we were questioning what to do for Mark.  The best advice anyone has given me came from her.  She said, “Remember, nothing is permanent. Make a choice, do it for six months and if it doesn’t work, change strategies and try something different.” We still live by that advice.

We had never heard of a deaf mentor before we met Karen and now we tell everyone we meet who has a deaf or hard of hearing child. Karen clued us in on what deaf and hard of hearing people face on a daily basis. Karen believes nothing is impossible for deaf and hard of hearing people and she helped our family realize that too.

Jessica Bianco

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Jessica Flores: Being Deaf is a Laughing Matter


 

 

Jessica Flores is on a mission: to make others laugh while she’s in the middle of her own journey of discovering her deaf self.  In a video that went viral on Now This, Breaking Deaf Taboos, Jessica shared some insight that started her on the path to becoming more comfortable being deaf:

So for a long time, I always felt really alone and isolated. I’m not gonna get into my whole life journey, but it was hard. And it was not an easy road to go down. It took me years to realize that I was not the only deaf person facing all these communication barriers and challenges every day. I seriously figured all this out like three years ago. Once I realized this, I wanted to do something about it.

Karen Putz and Jessica share a few laughs as Jessica tells more of the story of her journey:

 

 

Jessica’s popular videos:

Most Googled About Deaf People:
Can Deaf People Drive?:
What You Should Know About Hearing Aids:
What You Should Know About Captions:
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Teaching Deaf and Hard of Hearing Kids to Read

By Karen Putz, Co-Director of Deaf and Hard of Hearing Infusion

I grew up hard of hearing. The library was my favorite place and I often spent Saturday mornings picking up books for the week. I immersed myself in reading for hours and hours. For me, the written word was the key to the universe because the audio world simply wasn’t accessible. When I became a mom of three deaf and hard of hearing kids (who are now young adults) I was determined to give them the same keys to the universe. My children were all born with normal hearing and became deaf/hard of hearing at two, four, and two years of age. When they were born, I introduced them to board books before they could even sit up. I had books everywhere in the house–and always kept a box of books in the car. Today, all three of them enjoy reading, although they all took different paths to learn to read.

Here are some creative ways I’ve used to teach my children to read:

Make Reading FUN

The key to teaching reading to any child is to make it FUN! Learning to read doesn’t have to be a dreaded process for you or your child. Start early. Your infant can begin to enjoy picture books as early as six weeks–which is about when their vision sharpens. Keep in mind, books need to be held no more than ten inches away during the first three months.

As soon as each of my babies were a few weeks old, I brought out picture books with simple objects and just one to a page. Before my kids could even sit up, they would become excited at seeing the same books over and over. Often, my husband and I would team up to read, with one of us holding the kid and the other reading and signing. When our kids were a bit older, one of us would read out loud while the other held the book and followed along pointing at each word. We often alternated our methods in a variety of ways depending on each child’s development and skill.

Not only did we strive to develop their language skills, we worked on auditory skills with whatever auditory ability they had. Even kids with profound losses can appreciate books that focus on sound–using drums, vibrations, visual lights flashing, etc. Be as creative as you can in showing your child the visual and auditory world around you.

The Bathtub Reading Center

 

One of the best places to teach reading is in the tub. This is the perfect place to keep your child in one place for a while and have some fun learning to read. Of course, you’ll need to keep the books OUT of the water.  Occasionally I would also bring in treats like ice cream bars or popsicles (you can make healthy ones!) –this would keep my child occupied long enough to sit in one spot and watch me as I read from a book.

The best reading tool is a set of foam letters. Yes, that’s right. A cheap set of foam letters. I taught all three of my kids to read during bath time. Start by teaching them to recognize each letter. Once they know the alphabet, play “Hunt for the Letter” by placing two of them in the tub. “Where’s the A?” “Where’s the P?” You can gradually increase the number of letters floating around until you have the entire alphabet in the tub. You can use cueing, fingerspelling, or flashcards to show the letters you’re looking for. Have your child put each letter up on the bathroom wall as they find them. (If your child has a waterproof hearing device, they can keep it on during the play session–check with your audiologist to confirm).

The next step is to start spelling out short words. Cat. Dog. Mom. Dad. Pig. And so on. I had a whole collection of plastic animals that we used in the tub–I would put the word up on the wall and my kid would have to find the corresponding animal.

Here’s a way to vary the activity and encourage kids to think. Put up the word “Cat.” Then hold up an “M” and a “H.” Now ask your child, “Which letter would turn this word into “Hat?” If your child has some difficulty, then use visual cues, props, flashcards, cueing, or fingerspelling. Do this with a variety of easy words.

Around the House

Grab a 100-pack of index cards and a marker. Label things around the house and stick the cards to each item. Once your child has mastered the words, substitute the cards with more complex words or similar words. This works great for families with multiple languages. Yes, deaf and hard of hearing kids can learn more than one language. The key is to provide access in a way that the child can comprehend, process, and understand language.

Once your child has basic recognition of words on the index cards, you can put them in a pile and play, “Find the Word.” Then expand it to, “Create a Sentence.” For more advanced word, ask your child to pick up five index cards and “Create a Story” with the words. The stories can be as silly as possible!

Choose different areas of the house to read books. Spread a blanket outside and have a picnic while you read.

Use Books with Pictures for Words

One of my kids’ favorite books was “Picky Nicky.” This book was a bit more advanced for the beginner reader, but the beauty of this book was each sentence had one or two pictures in place of words.  I would read/sign the words and pause at the pictures. This gave my child the opportunity to fill in the word by looking at the picture. It was a great way to involve them in reading longer books and allowing them to participate in the reading. My kids also loved “The Very Hungry Caterpillar” because of the different-sized pages. For fun with pre-schoolers, you can purchase all the foods in the book and have a feast as you read!

Cooking + Reading

If you have a kid who won’t sit still long enough to get through a book, another way to teach reading is through cooking. Yup, that’s right, cooking! Use the back of a brownie or cake mix to teach reading. Most box mixes have pictures as well–showing eggs, a measuring cup, etc. Ask questions like:

“Can you find the word, ‘Pan?’”

“What temperature should I turn the oven on?”

“How many minutes do we need to bake the muffins?”

“Do we need one or two eggs?”

Let your child scan the box to find the answers.

Create simple recipes for foods that your family eats often and read the recipes together as you prepare the food. This skill goes a long way in life!

On the Road

One of the first signs my kids learned to read was the “stop” sign. “Oh look, there’s the stop sign,” you say as you come to a stop. “S. T. O. P. Yup, that means stop. So I’ll need to stop here.” Yes, that sounds cheesy when you say it, but hey, you’re teaching your kid to read everything, everywhere you go.

As they become older, you ask for their help in finding certain exits. “I need to watch for the exit for Lawrence,” you say. “Can you help me find the exit that begins with the letter, L?” Do this within a mile or two at first. For more fun, start out on a trip with a list of words to find and cross them off as you pass them by.

Play the License Plate Game on long trips. You can print out the license plates of all the states here: License Plate Printable.

Other Reading Tips:

When your child begins to learn to read and knows a few words from a favorite book, read along by pointing to each word/sentence (as you speak/sign/cue) and then stopping in puzzlement at a word that your child knows. Give them a chance to recognize and read the word–kids love to help adults and share what they know! When your child has a comprehensive understanding of a book, you can also have some fun by misreading a word and waiting to see if your child catches your mistake. This is also a way to test your child’s understanding and comprehension.

Another fun reading activity: alternate sentences when reading familiar books. You read one sentence, your kid reads the next one.

Everywhere you go, with everything you do, find and create opportunities to expand your child’s language and their exposure to the written word. One of our favorite toys was the Magnadoodle–I would introduce a new word and draw a picture for the word. This was great during the times we had to wait in doctor’s offices. At the beach, we would write words in the sand.

Pick books that fit your child’s language development at the time then alternate with a book that’s a bit above their language level. If you notice your child has a passion for a certain sport or activity, select books around those topics. My youngest child hated to read books but he was content to sit through a football book–he knew every NFL team by the time he was four. Don’t be afraid to read books that are above your child’s reading level. The more words you expose your child to, the better!

You can even find books with deaf/hard of hearing characters: Wikipedia List of Books with Deaf and Hard of Hearing Characters

Here are some resources for teaching your child to read:

Clerc Center Literacy

Hands & Voices Literacy Resources and Research

Instructional Strategies for Students Who are Deaf or Hard of Hearing

 

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Ashlei Powell: Creating Deaf Wearables

My name is Ashlei Powell and I have bilateral cochlear implants. I became deaf at eleven months from meningitis and received my first implant, on my second birthday, in 1990. I was the youngest recipient in the USA (just after FDA approved the cochlear implant for children) and the first youngest, in the world at the time, to receive a cochlear implant.


After receiving my first implant, I attended speech therapy for several years to learn how to listen and speak. Growing up, I had the opportunity to speak about my hearing experiences at auctions, in news interviews, and even with the first deaf Miss America, Heather Whitestone. After fifteen years of wearing just one cochlear implant on my right side, I felt like I was missing a puzzle piece. In 2005, I received my second implant and it was indeed, the missing puzzle piece for me.


I attended Pensacola Christian College in Florida for three years, before coming back home to marry my college sweetheart, Joe. We are proud parents of two dogs and a spunky and sweet two-year-old boy, Jackson.

My life has had a few challenges, but has been incredible and full of blessings. As being a Cochlear Implant recipient, I had to find ways to help me listen in life and in school that would work best for me. I made it work and accomplished a lot. I love being a bilateral recipient and I enjoy sharing my story to help others who are considering cochlear implants.

I have always wanted to be a nurse, but it wasn’t what the Lord wanted for me, so I tried a few classes in the medical field to see where the Lord wanted me to go. I’m now currently working as a phlebotomist at a hospital, running my own Deaf Wearables business, and also being a mommy and a wife.

In summer of 2017, I participated in a physically challenging obstacle course at Copper Mountain.  I looked everywhere online for outer wear that showed I couldn’t hear…..something I could attach or could wear on my clothes, arm or headband that said the word, “deaf”. There was not one single thing out there and I thought it was so frustrating and not fair to the deaf community.
I recently started producing of all kinds of Deaf Wearables for all ages, that can be used in all kinds of activities such as skiing, marathons, hikes, walks, etc., even daily life.  The reason why I have a line going through the ear is because it’s very simple and produces a quick understanding, like the universal symbol, to let people know the person can’t hear.  I wanted to present this collection of wearables in a fun and inviting way. I know how hard it is to do everyday activities without people being aware of someone’s deafness. My products contain: reflective vests, shirts, neon headbands, key chains, bags, stickers, etc. that have the word, “deaf” on it. My goal is to produce deaf wearables that people would be excited and proud to let others know that they’re deaf–all while being fashionably current.

 

For more information on Deaf Wearables:

www.deafwearables.com 

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