Amanda Case: Our Journey with Progressive Hearing Loss

In-between Two Worlds – Our Journey with Progressive Hearing Loss

It is hard to believe that it has been 6 1/2 years since we first received our daughter’s diagnosis of hearing loss. I still remember the fear that washed over me, suddenly feeling unequipped to be her mom. I had never known a Deaf person, I didn’t know ASL, what do we do next?

At age three, we had her fitted for her first hearing aid, enrolled her in the Special Education Preschool in our district, and met with an ENT and geneticist to see if we could see what was causing her hearing loss. Just as we were settling in to our “new normal,” we found out our daughter has Pendred Syndrome, which is characterized by progressive hearing loss and possible Goiter that presents in early adulthood.

We have had our ups and downs with the diagnosis. The first audiogram that showed a significant increase in loss was a hard reminder of what our future held. Our “new normal” was always going to be changing. We were always going to be adapting, and making adjustments.

By kindergarten, she was in a mainstream classroom and excelling across the board. Her personality is infectious and she made friends wherever she went. She educates her peers on her hearing loss, and has become a strong advocate for herself.

It wasn’t until her brother was born that the issues with progressive hearing loss started to present. Our son, while a carrier for Pendred Syndrome, does not have hearing loss. My daughter was heartbroken. At first she didn’t want him to have it, but as we awaited the results, she was hoping for someone like her. She so desperately wanted to teach her brother about hearing loss, make hearing aid charms for him, and “have someone in the family like ‘her’.”

At that moment, she burst into tears, letting her emotions spill out. She was scared of losing her hearing, and losing everything she had known for the last 6 years. She was scared of losing her friends, but also feeling lonely having only met one other person with hearing loss.

Trying to find groups to join proved difficult. Family ASL classes were hard to come by. As a family, we felt most of our resources kept us in, isolated from both worlds. Eventually I was able to join some social media groups, but many recommendations didn’t really consider my daughter’s situation. She was deaf, but she had some of her hearing. She had her feet in two worlds.

During a third grade project, she had an amazing opportunity to interview one of her role models, Dame Evelyn Glennie. Evelyn is a world renowned solo concert percussionist who is not only deaf, but lost her hearing at age 12. It was a moment that will stay with my daughter forever. The opportunity boosted her self-confidence, and you could see the smile wash over her just to be talking to somebody like her. Not only was Evelyn deaf, but she knew what it was like to hear before her hearing went completely. She opened my daughter’s eyes to different ways of hearing, and for a time, removed the fear she was feeling about losing all of her hearing.

Fast forward to today, my nine year old fourth grader is in a new district, doing well, but facing new obstacles. She is the new kid at school AND she is deaf. These kids have not known her since kindergarten, and they don’t always know how to interact with her, even though it is the same as they would with anybody. Her sadness and exhaustion comes through more days than before.

Friendships take time, they thrive on common threads, and it has been this process of forming new friendships that has made her differences stand out to her. She has cried often, feeling alone, missing her old friends, and scared of when her hearing will go completely. It has rekindled the need and the drive to find deaf friends, to become more involved with Deaf culture, and to become fluent in ASL.

At times, it feels very lonely. The advice we often get is either “make her get a cochlear implant” or “you need to put her in a Deaf school.” It is always black or white, but Addie is deaf AND (for the time being) she is hearing.

We are working hard to prepare for the future, learning ASL, and at times it is uncomfortable. Though we are always welcomed warmly, we sometimes feel like outsiders at DHH events as we are still beginning to learn ASL. We also feel like our daughter’s hearing loss can be forgotten when we are in the hearing world and have to look for accommodations so that our daughter does not miss out on experiences.

I often wonder what her relationships in the future will look like. Will any of her hearing friends learn ASL? What will family functions look like? What is going to change and how will she feel with the inevitable changes? The waiting and wondering drives a lot of conversations in our household, and ultimately is basis for a lot of decision making.

Fortunately, we are in an amazing school district that houses the DHH middle and high schools. We have been able to attend a few Family ASL classes, and have joined a parent support group. While we are very excited as a family, the whole process has highlighted the middle area that we fall in. The DHH program sounds AMAZING, and while my husband and I are very excited about it, our daughter is not. She is conflicted. She wants to make friends like her, but she also doesn’t want to leave her hearing friends again.

It feels like a constant struggle. When are we being good parents and letting her have a voice? When is it neglecting her needs? I imagine the conversation will get slightly easier as we get better at ASL and can submerge ourselves in the Deaf community more. For now, we feel like outsiders of both worlds, and are desperately trying to find the best way to blend the two for our situation.

Amanda Case

Visit Amanda and her daughter’s Hear with the Heart shop (Hearing aid charms)

Amanda’s blog: Hear with the Heart

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Katie McCarthy: Growing Up with Dual Identities

Today, I am a career-driven married woman, happily pursuing the little moments in life with a passion for human services, teaching, traveling, cooking and animals.

Ten years ago, I didn’t think it would even be possible to be married–and twenty years ago, I only had a glimpse into what life would be like for Deaf individuals.

Back then, I knew I could pursue any dream and I wanted to be a writer, however, I only met a few Deaf adults until college so I had a limited view of the opportunities that lay ahead as a Deaf individual. And back then, as a member of the LGBT community, my views were narrow, full of others’ fears and opinions thrust upon me, not my own happiness. Once I realized that I had to love myself first, that my worth and happiness were important and I was surrounded by people who saw me for who I was as a person, not my identities, my perceptions changed as I grew older.

When I was born, two identities were gifted to me. I was born profoundly Deaf, due to a premature birth, into a hearing family. I also realized I was not straight. Growing up with these two identities were honestly just like having two arms and legs, ten fingers and toes, green eyes, and a beating heart. I didn’t know any different inward. But outward, I realized quickly that growing up with dual identities was not simple. Many factors were at play – others’ opinions and social perceptions – and I had to navigate them.

I focused on growing up as a Deaf person first, and kept my second identity at bay for a long time. I thought it was impossible to grow up with two identities. It would be too much and people would look at me through different lenses if I revealed my second identity. And when that happened, I found I was still breathing. I survived. Many children and young adults do not (are not able to) speak up about it and feel safe in the process.

The five main things I would have told my younger self are:

1. Be gentle with yourself.
2. You are more resilient than you think.
3. Connect with those that you trust to be yourself with.
4. Meet others who are or have gone on similar journeys as yours.
5. Don’t change who you are for anyone else.

I want to tell these children and adults who grow up being Deaf and a member of the LGBT community – you are loved just as who you are. And I want to tell their parents that, even though it may feel overwhelming walking by your child through their identity journey when you may not have been on either yourself before you met your child, your child is just meant to be exactly who they are. Nurture the core of who they are, focus on the things they CAN do, meet other adults like them, and help them thrive. It is important to ensure the child is heard, understood and loved first, and then go through the journey with them, not above them.

Once I realized my worth, things naturally fell into place. I met my wife and we have a rich life together–full of laughter, faith and adventure. I have to pinch myself sometimes. How did I get so lucky? Then I realize immediately after, these two identities are a gift…and I embrace them wholly.

 

Katie McCarthy can be reached via karen@handsandvoices.org –she is willing to talk with families who have children with dual identities. 

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Marbely Barahona: We Wondered How His Future Would Be

Today was the day.

As parents of a deaf child, we always wondered how his future would be.

At some point, we felt overwhelmed, sad and very hopeless. We remember those days that we couldn’t see a clear future for him.

Today, he left from our nest and found his own wings. It was hard to let him go, but we knew he was ready.

He is ready because we didn’t let anyone dictate our choices.

He is ready because we never let him feel less capable of doing something, because we worked days and nights incessantly to make sure he developed a language.

He is ready because he had people around him that truly cared: teachers, audiologists, professionals and a wonderful organization, Hands & Voices where we together as a family learned so much and never again felt alone in this journey.

He is ready because we encouraged him to make friends, those that last forever, because he took advantage of every moment, every challenge, every adventure.

This is just a new beginning for him, there is still a lot more to do, only that this time he will do it by himself, he will advocate for himself and he will become a man.

Marbely Barahona

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LaShawna Sims: Deaf with Autism

I have heard that oftentimes the first deaf or hard of hearing person some people meet is their own deaf or hard of hearing child. While for us that wasn’t the case, we had a similar experience, but with a different diagnosis. We have two boys who are both severe to profoundly deaf and bilateral cochlear implant users. Our youngest, also has Autism.

We knew one person with Autism. All we knew of Autism was what we saw in that one individual. I remember telling myself things like; no, our youngest doesn’t have Autism. He doesn’t act the same way or do the same things that person does. I think it’s just that we don’t socialize him enough since his big brother started school. His progress, or lack thereof, in speech is fine. We were told that not all children with cochlear implants progress at the same speed. The professionals advised us to not compare his progress in speech with his older brother’s progress.


A common question asked in our home is, “Is it the Autism, the hearing loss or just him being a kid?”. Our son was diagnosed as “Moderate” and “High-Functioning” on the Autism Spectrum. He is also non-verbal but uses some ASL and the Picture Exchange Communication System (PECS) to communicate with us. Over the years his receptive language skills have blossomed. Most days he wears his CIs with no issues. Other days, he knocks them off as if they are causing discomfort. It is often hard to determine whether or not he is having a sensory moment because of the Autism, being a “typical” child who is having a moment of defiance, or if there is something wrong with his CIs.

I like to say there is a lot of troubleshooting that goes on with our son. Some days he is happy to put his CIs on, while others days it can be a bit of a tug of war. I have a hard time somedays making him put his CIs on because in some ways I feel like I am not being mindful of his Autism diagnosis and what effects the “silence to instant sound” may have on him. Because his expressive language is still progressing, it can be a challenge to know exactly what is going on with him. He can let us know in sign or with PECS that he is hurt, sad, calm, or silly and wiggly. But when it comes to expressing exactly WHY he is feeling those ways, we aren’t always sure.

In the past, Logan has never really gotten a good “map” for his CIs and we think that is due to his Autism diagnosis. Getting him to reliably respond to any sounds he is hearing has been a work in progress. Before he was diagnosed, I dreaded going to the audiologist because it was a literal WWE match trying to hold him down just to run and impedance test. I can remember making sure that I wore clothes that would allow me to wrestle with him and not look completely disheveled after the appointment. Leaving those appointments, I would feel so defeated. I’d feel like I was a terrible parent for forcing him to go through the appointment. Then on the flip side, I knew that I wanted him to have as much good access to sound as possible because that’s what he needed if we wanted him to eventually use spoken language. For a number of years, all of his “maps” were manually made and set very conservatively.

Once we got the Autism diagnosis, things changed for the better. His behaviors all began to make sense. We started ABA therapy for him. His therapists have been quite accommodating in respecting our wishes of incorporating ASL in his therapy as a way of communication. Almost all of his therapists knew not one sign in ASL. Now, many of them have been inspired to learn more ASL and even use it with some of their other non-verbal clients. We’ve even had much better success at the audiologist! I can happily say that I no longer have to wear my “wrestling” attire to an appointment. With the help of his ABA therapists, we have worked on “mock audiology appointments” which have proven to be successful for Logan. He has gotten the best “maps” he’s ever had in his initial years of having cochlear implants.

While things are progressively getting better, we still have our struggles. We are learning together as a family. It’s not easy to pick apart which diagnosis is causing whatever action, feeling or emotion he may be experiencing. All we can do is take it day by day and one step at a time. In all of those hours and steps, we revel in the fact that he is uniquely him and we love every little thing about him. It makes us stronger as individuals and stronger as a family. Even though we have had some hard days, it’s always nice to look back at those struggles and celebrate how far Logan has come. It’s a great reminder that despite our current struggle, we will overcome it together as a family. For that, we are blessed and grateful for this unique journey.

LaShawna Sims, Bilingual Southern Nevada Regional Guide

Nevada Hands & Voices

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Warren “Wawa” Snipe: Deaf Rapper Seeks to Make an Impact

Warren “WAWA” Snipe is a  rapper who happens to be deaf. To say he loves music is an understatement. Warren has created a brand of his own: Dip Hop–music through Deaf eyes. In an interview with AI Media, Warren explained more of the “why” behind his music:

“…what I do is expose my Deaf culture positively of what we go through, we can succeed, we can do anything hearing people can do. We just have to work maybe two times, three times, four times, maybe a hundred times harder to become equal or better than our hearing peers. So, dip hop is a really strong thing that I want you guys to be aware of.”

 

Warren was recently featured in season two of Black Lightning, (he shares his experience here: Black Deaf Actor in Season Two of Black Lightning).

In his music video, “Vendetta,” Warren and his music partner, Dj Nicar, address the topic of bullying:

Karen Putz, Co-Director of Deaf and Hard of Hearing Infusion at Hands & Voices interviewed WaWa about his career:

For more information on WaWa and to check out his work:

WAWA’s World

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Valli Gideons: My Battle Call

Raising kids is hard. Add a diagnosis of hearing loss and you might find yourself thinking parenting is not for the faint of heart.

My children were born with needs categorized as “special.” They look like typical kids (with the exception of their devices) but they don’t hear like those with natural hearing.

Understanding and information are key.

Some things I recommend people avoid saying to a parent:

• My child also uses selective hearing.

Most people want to make you feel normal, only a hearing child’s experience is not the same as one who is deaf.  Sure, all kids use selective hearing from time-to-time, but kids with hearing loss experience sound much different.

According to an article written in Central Institute for the Deaf by Karen Anderson, PhD., when researchers examined fatigue in children with hearing loss they found that children reported a greater level of fatigue than those with typical hearing.

She goes on to say kids with hearing loss also exert more effort during listening tasks than their typically-hearing peers. Any degree of hearing loss, with or without amplification, requires a greater effort.

• I could never do what you do.

There are days I feel like I can’t do it or don’t want to do it. Only, that’s not an option. Throughout the years I have had moments I wished things were different. But, then I remember—this is us. And I wouldn’t change it.

• They use their hearing as an excuse.

Research shows fatigue experienced by children with hearing loss is substantial, even when compared to children with other chronic health conditions.

But, because hearing loss is invisible, the effects of fragmented hearing, listening comprehension, and fatigue are often ignored.

There are times my kids have bad behavior. This makes them typical. However; without proper listening breaks, they have a hard time regulating. Knowing the difference is the key.

• God gave you this because HE knew you could handle it.

I don’t think God gave this to me. I am sure He designed my kids perfectly imperfect.

• My (insert name) wears hearing aids.

Grandpa becoming hard-of-hearing late in life and getting hearing aids is NOT the same as being born deaf.  A grown person who takes off his hearing aids to tune out Grandma (perhaps humorous to some), in our world isn’t funny. And, it’s not the same.

Losing your hearing, at any age, can be isolating and difficult, and isn’t a joke.

• Your kids have progressed because they have matured.

This minimizes the countless hours of therapy and tough grind they have been through. To say they are thriving simply because they are older discounts all their hard work and oversimplifies something otherwise complex.

We don’t have it harder than most families. I’ve learned every person has something to overcome, whether invisible or not. And, in the end, we want our kids to be happy, kind, and a little uniquely special. Ultimately, what this mother of kids with special needs want others to say:

I see you. I see your kids.
Not just the special part.
THE WHOLE PART.

Written by Valli Vida Gideons on My Battle Call

This piece originally published here:

Raising kids is hard. Add a diagnosis of hearing loss and you might find yourself thinking parenting is not for the…

Posted by My Battle Call on Monday, October 8, 2018

For more like this—you can follow Valli here:

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Valligideons.wordpress.com

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The Journey of Acceptance

During a staff discussion, the topic of “acceptance” came up. The journey of raising a child who is deaf/hard of hearing is an intensely personal one.

Hands & Voices posted this question on our Facebook page.

Parents,

Tell us about your experience:

I realized that I accepted my child’s deaf/hard of hearing journey when__________________.

Here are the responses that were shared:

I realized that I was given the gift of being this small human’s mommy, and God had His own plans for me with this journey. It was about a week after she was identified with bilateral severe/profound sensori-neural loss.


 

When I was no longer angry! It took a long time to get there also, probably 7+ years.


I realized that I accepted my child’s hard of hearing journey when she answered audible questions in sign language. She also has Apraxia of Speech, so her ability to form verbal words is super tough.


I was young when I had my daughter 18, 19 when I found out her hearing loss. I use to blame myself, that I had done something to cause this. When I stopped blaming myself and realizing that she was extra special. We started signing when she was 5-6 months old. I accepted it, when I stopped punishing myself for it..When she was one she got implanted with cochlear implants and that’s when our real journey started. Reaching milestone after milestone. She started first grade this year!


I found a sign language book at the store at the mall (remember when they had them) and started teaching her myself. At that point, no one official accepted she was deaf. Later, we switched to cued speech. That was on us, too. It was a very rocky road before diagnosis (thanks, Arlington Hearing Resources!)


I let go of the idea of what a “normal” child should be.


I accepted it immediately so that I could move forward and educate myself for my child, as denial gives no benefit to anyone. However, I have experienced several evolutions of understanding and ways of guiding my child, since there is no one resource or guide that applies to all deaf/hoh, or their attitude towards deaf culture. It is ALL on us as parents, that’s for sure… Educators and deaf culture can’t come together, and it is a terribly sad thing.


Honestly, not sure if I have fully accepted it yet. Going on three years now. I am waiting for the day to talk about it without crying. Y’all give me hope I will one day be able to fully and truly accept it.


I realized that I accepted my child’s deaf/hard of hearing journey when I had connected with parents and families, deaf adults and providers to learn from and feel supported. Transformational learning can not be done in isolation.


When she became “okay” with it. She got her hearing aids in the 3rd grade and was excited. Until the 5th grade…seeing her struggle with self esteem and not socializing hurt me to the core. She is now 15…growing in self advocacy confidence is returning…she wears her aids with no problem and is beginning to make d/hoh friends thru the camps she attended this summer.


When I was told she was hard of hearing.  It didn’t make a difference to me.


Well I have a twin brother who is profoundly deaf. My oldest son, we knew something was up around 2 months old they didn’t do newborn screen then. I accepted it right away, maybe because I grew up with it.When I was pregnant with my daughter we were prepared either way she is fine. Then there’s my 9 year old, we knew the second I found out he was a boy I knew he would have a hearing loss just not sure how bad.He was miss diagnosed 2 times before it came back moderate hearing loss.He also had severe speech delay with it my oldest never had speech problems.


I realized I had accepted my child’s hard of hearing journey when I could tell our story to other parents and not cry, but smile because the journey had made us so much stronger.


When I realized my strong, intelligent, beautiful girl; full of personality, can do anything anyone else can. Straight A’s and headed to the 7th grade! Proud mama.


I realized that I accepted my two sons’ deaf journey when I made friends with deaf adults and learned that it was all going to work out. I now consider their deafness to be my greatest gift. I have grown in ways that I never dreamed were possible.


My son was diagnosed when he was three. H&V, you all are great, and helped us to understand what we were going thru. I miss you all .


When my child was able to ask for help via sign language (at 10 months).


My husband is partially deaf (50% without hearing aids, 80% with), so we always knew it was a possibility. For my daughter, after her hearing test at age three. She had already failed the newborn screening, and had had two inconclusive ABRs. My son was as soon as he was born. Failed his newborn screening, but does have better hearing than my daughter.


I realized that God had blessed us!


I realized I accepted my daughter’s Deah/HOH journey when I met and got to know happy, well-adjusted, self-confident & successful d/hh adults who were willing to share their stories & culture, and also connected with parents who were supportive & knowledgeable. This process of acceptance & honoring continues today as I get to experience her as a happy, successful, self-confident mother & professional who is bi-lingual/bi-cultural.


It took me like six years to accept that he was hard of hearing and in the seventh year, my girl was born with the same problem and for me it was very hard, she is 4 years old and the boy 10. and I think I have not accepted it completely, I still wonder why?


Me tomo como 6 años, aceptarque el tenia perdida de audición bilateral y al séptimo año nació mi niña con el mismo problema y para mi fue muy duro, ella tiene 4 años, y el niño, 10 años. Creo que no lo he aceptado completamente, aún me pregunto por que?


He was one day old and failed two newborn hearing screenings. God gave me this beautiful little soul and made him how he saw fit. It’s my job to join him on this journey and help him any way that I can. My baby can do ANYTHING he sets his mind to.


I had an official diagnosis.


I could mention it to other people without breaking down and bawling my eyes out. It’s still a tough pill to swallow but it’s getting easier, but I still wonder why it happened. Now I just worry about the bullying I’m afraid he’s going to receive growing up (kids are mean).


I just wanted to share with you about my hearing parents . My hearing parents wanted me to be like other hearing peers . She (my mom) wanted me to manage and communicate better in the hearing World. She wanted me to hear and speak better in order to communicate via hearing people . I understand and respect their wishes . I can not change their views and opinions . They’re my mom and dad …


EHDI (Early intervention) did not exist when my daughter was born. That being said, once we had the diagnosis I was relieved, but not surprised as there is a history of deafness in our family. We charged onward. My daughter is very strong, independent, proud, beautiful Deaf woman who dreams big!


I realized it when I began to meet other families with children who were both deaf and hard of hearing. Seeing how “normal” they were and how they did everything else hearing children do. Once I let go of feeling embarrassed, to be open about it. I’m so proud of my deaf daughter. I love educating people who ask me. It makes me feel empowered and honored to be her mama.  Plus, I’ve met the most amazing families along this journey and when I think about if it weren’t for my daughter I might not know any of them…wow. I am so lucky!


Right before our appointment where the audiologist confirmed hearing loss… (12.5 months) after 12 months and roughly 6 audiology visits, two ENT visits, and starting Early start a couple months prior, I realized how sad I would be if she was determined to have normal levels and we would be kicked out of the program we loved so much with all of our DHH infant friends. Def made it easier to face the other challenges that came our way.


I don’t know. When she got accepted to Gallaudet?
Seriously though, about a week after diagnosis. I come from a family peppered with Deaf people. I knew the old realities, but man, so much has changed.


I realized that I accepted my son’s hard of hearing journey when he began to wear his hearing aids without being asked to. When he began to realize he needed them, I knew it was a real deal!


…when a family member said “he won’t have to wear his hearing aid all the time, will he? Like in photos?”

…when others’ lack of acceptance becomes your moment of acceptance!!


I went to my first Michigan Hands and Voices conference and met so many others from infancy to adults who thrive each day. I knew that my son thrives in his own way.

 

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Lauren Honold: Making an Impact Through a Community Service Project

Imagine a world where everybody was represented equally. Where the children of the future embrace their differences rather than ignore them or forget about them. I’m Lauren Honold, and that’s my dream. I know I’m not the only deaf kid in the world. So where is the media representation for us?

Ever since I was born, I’ve been hard of hearing. Although I usually go by the term “deaf”, I have a sloping (mild-moderate-severe) hearing loss in my left ear and am fully deaf in the other. I wear one hearing aid and one cochlear implant. Although I as a young child never really got to choose whether I got a hearing aid or not, at age ten I chose to have cochlear implant surgery. This was probably the best and most life-changing decision of my life, in all honesty. Hearing the high frequency noises from my right ear for the first time in my entire life was an experience I will never forget.

But I’m not just deaf- I’m also simply a normal fourteen year old kid going into high school later this year. I enjoy drawing, singing, listening to nerdy Broadway musicals, math, space, and most importantly and notably, the practice of mixing activism with traditional art.

School is definitely a highlight for me. Often it can be a really great place for me to have fun with friends. I have a pretty huge and supportive group of friends there, anyway. In fact, one of them is also hard of hearing. However, school isn’t perfect. Even for kids who can hear, it can be really difficult to understand most people during lunch period for the first time. But the experiences of having new friends and supportive teachers far outweigh the issues.

It’s mostly thanks to my family that I’m better at speech and hearing than I was when I was younger, from when they took me to get speech therapy at age nine to my surgery at age ten. My parents say that they’re extremely proud of my love of activism, humor, ability to think very deeply, and grace.
Of course, despite all this, I can’t help but always feel a bit out of place in school and society, with few famous young deaf people in the mainstream media. Peer pressure and the occasional bully sometimes made me feel almost alone among the masses, with no one to relate to.

Then, last month, I was assigned a school community service project. The sky was the limit- I could do whatever I wanted so long as it helped my town in some way. So naturally, thinking of my past experiences with bullying, I chose to create a set of posters that embraced diversity and empowered minority groups and different cultures- for example, the deaf and hard of hearing community. These posters will be distributed around the Seattle area in Washington State.

It’s mostly thanks to my family that I’m even doing this service project. Although I did not require help when it came to the art and technical bits, they provided me with the mental capacity and strength to continue on with this. If I had to ask my parents what quality I possess that they are most proud of, I would say that it would be my love of activism, humor, ability to think very deeply, and grace. That’s what I’m hoping for, anyway. Fingers crossed!

However, I’m not making this whole project my entire life. I’ve been shooting for the University of Washington for almost two years in the hope of pursuing a NASA internship (thanks to the partnership that UW and NASA have established). Although I’m only in 8th grade, it’s always good to dream for what you might have one day. One day I’ll be a scientist, an activist, an artist. There are so many things I want to be that my heart cannot set upon just one.

My hope is to provide my community with examples of strong individuals who identify as minorities. I hope that people connect with my art and my message. If they are in Seattle, they can spread my message by taking a selfie with my art and sharing it with their friends. If they aren’t local, they can find my art and share the message on social media with this hashtag: #ArtForTheStronglyDiverse. And hey, if you want to go check out my portfolio, just go follow @ArtForTheStronglyDiverse on Instagram! I’d love to connect with you online. Imagine if this goes worldwide!

Lauren Honold

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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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