Yiesell Rayon: A Rude Encounter

It’s always exciting to try new things, but I never expected a rude encounter to come with it…

After a week long conference, a group of us wanted to get out and try “Chicago’s favorites.” Karen Putz, Co-Director of DHH Infusion, lives in the Chicago area. Anita Dowd and Virginia Moore from the Kentucky Commission for the Deaf joined us. We grabbed lunch at Lou Malnatis pizza. Karen kept bragging about Garrett Popcorn Shops and told us we had to try it.

“Let’s do it!” I said.

We didn’t have much time before we had to be at the airport.

“I’ll pull up right in front of the shop and you and Anita can get the popcorn while we drive around,”  Karen said.

The plan was to be in and out of the shop and then on our way with the amazing popcorn we just had to try.

As Anita and I walked into the shop, I noticed it was empty. It was a perfect time to ask for samples. We had never been to Garrett’s and they had five different flavors to choose from. Anita pulled out her phone to FaceTime her daughter to ask what flavored popcorn she wanted.

As I was talking to the young lady behind the counter, a man walked into the store.

“Go ahead and help him. We are still not ready.”, I told her. The lady asked the man to go around us to the register to take his order.

“Excuse me”, he told Anita.

No response.

“Excuse me!”, he said again a bit louder.

“I’m sorry, she’s Deaf”, I said as I turned around and noticed Anita was focused on her phone with her daughter.

“Move!” he yelled.

“I just told you, she’s Deaf.” I said.

“Well, tell her to f&%$& move!”

I instantly froze.

I was upset and insulted with the man’s reaction. As I looked at Anita, I realized she still had no clue what was going on.

“You don’t need to be rude,” I said.

At that moment, I became angry.

I have a seven year old Deaf son and this is the ignorance he will have to deal with. Anita had been signing with her daughter the entire time. How did this man not think she may be Deaf? I had already tried to explain she was Deaf. Why would he decide to be so rude? How does anyone have the heart to treat someone this way?

My heart was immediately broken.

Not just for Anita, but for every Deaf or Hard of Hearing individual out here, including my Deaf son, Markie.

The man rudely got around Anita as he replied, “Its not my f&%$* fault she’s Deaf”.

I became very emotional and started to tear up. Anita looked up in confusion and asked what was going on. I briefly and quickly tried to explained to Anita, but the man continued to yell out comments. The security guard approached the man and asked him to calm down. The manager of the shop came out from behind.

To our surprise, the manager knew some signs. Not much, but enough to make Anita feel comfortable and take her order. All of the Garrett’s employees were kind and kept asking if we were okay. They showed compassion–and kept apologizing for the man they didn’t even know.

The man left the store, but he left me upset. I had heard many stories over the years, but I had never experienced anything like this myself. The incident didn’t involve me, but it involved my friend, my Deaf friend. Someone who has lived life being Deaf, someone just like my son. I am afraid for the day my son is mistreated simply because he couldn’t hear. The man was right. Anita being Deaf was not his fault, but it is not Anita’s fault either. Being Deaf may be a challenge in today’s society, but its not a bad thing. What is bad, is when someone thinks its okay to be disrespectful to someone simply because they are Deaf.

Yiesell Rayon, Director of Latino Support

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

Jeff Prail: In Both Worlds

I am fortunate that I grew up and experienced both worlds (deaf and hearing) and I consider myself the lucky one for still being in both worlds. The credit goes to my deaf parents, who never held me back from the moment I came into the world. I wasn’t born as a deaf child, but lost a majority of my hearing due to German Measles and a high fever when I was an infant.

My primary language is American Sign Language, my secondary is English–and my upbringing was a difficult task when learning ASL and English (how to speak) at the same time. My mom always made sure that from the moment I was in my diaper until I graduated from high school, speech therapy was always part of my IEP (Individual Education Plan). I used to think it was the worst torture a kid could have throughout the first half of my childhood life, but now I am thankful–because I wouldn’t be who I am if it was not for my mom’s decisions.

Now, going back into 70’s and 80’s, you could say I was a child slave (just kidding!), always becoming the eyes and voices for my deaf parents because during the early era, there were no sign language interpreters or telephone/video relay services. My sister and I always went with my parents to become their personal interpreters. My folks called it “Love”, I called it, “taken advantage of” but in the end, I was always rewarded with Star Wars toys. (I shouldn’t really be complaining, because I sure do love my Star Wars!)

Looking through both worlds with my eyes, I have seen discrimination against my parents just because they couldn’t hear. Many times my sister and I would stand up for my parents, because it wasn’t their fault they could not hear. Believe it or not; even in today’s society with the American with Disabilities Act in place, discrimination still exists. The stories I could tell would turn this post into a trilogy series like Lord of the Rings.

Since there were no sign language interpreters during my childhood days, my mom made sure I sat in front of the class–and how I dreaded sitting in the front rows where we all become Teachers’ Pet. When I was a kid, I wore an FM system strapped to my chest, with wires attached to ear molds. I hated them so much that I kept taking them off and threw the FM system into the toilet and tried to flush it down. It was so big that it just wouldn’t spiral down into the sewer. The school contacted my mom and she would come to school and scold me not to do it again.

But…as the Britney Spears song goes, “Oops, I did it again.” I got into trouble more than once.

When I was in middle school, I was in a special class setting with other deaf/hard of hearing students at a hearing school. We were stuck in a classroom with the same teacher all day long; all of us sat around a round table to make visual communication easier. I disliked my teacher, who was as strict as a nun. She would correct the students over and over again until we get it right. Man, I thought I would never escape that classroom. But, looking back, I am thankful, because if it were not for that classroom, making friends would have been difficult for me as it has been since middle and high school.

Due to my hearing loss, there were many times where I was left out or could not understand spoken words. One incident that really hit me hard happened after a concert. My dad and my sister picked me and my friends up and we were heading home. All of a sudden, my sister went off on my two friends, berating them for making fun of me and the way I talked. When my dad found out, he pulled the car over and he kicked them out and told them to walk home. Then and now, trusting a hearing person is sometimes difficult for me, for I never know if they are truly a friend.

I didn’t ride the school bus; I had a personal taxi driver taking a deaf student and me to school. The driver would stop by the Nebraska School for the Deaf and drop off the student. Then he would drop me off at the mainstream school. One day, I hopped off the taxi and walked into the administration building and enrolled myself in school. It was the first time I ever advocated for myself in the educational setting. I wanted to find a place where I belong, in a culture that I truly understood! The NSD administrator called my mom and basically told her that I enrolled myself in and needed her consent. What I didn’t realize, that moment became an educational battleground for my mom and dad. The school district would not approve my transfer.I was able to remain a student for two and a half years at NSD. My parents fought the school board every step of the way and lost. The school board didn’t care how I felt; I was just a statistic to them. When I was forced to go back to the “hearing” school, I made sure I was heard loud and clear. I stopped talking and started signing in the classroom just to frustrate the hell out of all my teachers during 7th and 8th grade. When I got mad at the teacher, I would sign and express in profanity that teachers could not understand and I would just turn around and walk out of the classroom with a smile. Now, knowing sign language and turning off my voice box sure had its own perks; expressive communication! I can’t recall how many times my parents got called to the school to address the situation. My dad always told the teachers, “Perhaps its time for you to start learning sign language, this way Jeff won’t feel left out.” My parents stood up for me 100% and would not cave in!

My high school days were a riot! I felt normal for the first time because I hung out with “the hood,” concert buddies that I go to concert with. I stuck with the same crowd all through high school and that really helped me by making sure I was not left out.

There was one big change in my high school; I was tired of speech therapy and English grammar was my biggest struggle so we made a shift in my IEP to focus on using speech therapy time to learn proper English grammar and idioms instead of speech skills. I was blessed to have that as part of my therapy skills because I needed those skills to survive in a hearing world.

Now, standing firm with both feet on the ground is something my dad taught me, he would share his life experience because my parents had it worse than my sister and I so I strive myself to educate myself to become my own advocate.

Now, I already shared my first-time as an advocate, my second experience as an advocate was for my Deaf friends who attended the Nebraska School for the Deaf–the state was planning to shut it down. An executive meeting was being held at the city hall and I had the opportunity to speak on the floor. I shared my experience of what it was like being left out at a hearing school and how I felt I belonged at NSD. I also pointed out that closing this school down is an immediate educational failure for my friends because at that time there were no interpreters for mainstream classrooms. I recall telling every student in that meeting room to hold up their signs stating millions of reasons not to shut down the school. It’s their home away from home, a culture that we identify ourselves with, a culture that we belong together, and a culture where our language is understood!

The school stayed open until I graduated from high school. The biggest honor that NSD did for me happened at the high school graduation. The students I was suppose to graduate with (had we won our fight for placement at NSD); had an empty chair on the stage with the graduating class. I was in the crowd when the Valedictorian, Mindy, said in her speech that empty chair was for me!

After high school, I attended National Technical Institute for the Deaf/Rochester Institute of Technology and majored in Quality Management. I picked this particular college because, at that time, it was one of the few that offers both worlds and I felt I would fit in. I was once asked my deaf girlfriend during my college days on what would I pick if there is a checkbox that says deaf, or hearing, which I would pick. I said both because I grew up in both worlds. It was not one world or the other, because that’s the world I grew up in.

Since I shared much of my diaper days till after college partying days, I have gotten older and wiser and of course, being a parent will do that. I am blessed to have two sons who are my pride and joy, Jacob and Riley.

 

My advice to you as a parent, whether you are single, married or divorced: your child is the love of your life and you have their best interests in mind– assure that your child gets the best in life even though we all know there is no such thing as smooth sailing. Your child, deaf or hard of hearing, will face struggles in his or her lifetime. Discrimination and oppression will continue to exist, so always prepare your child to advocate for themselves, and also be there as a supportive parent because you don’t know how that feels until it happens.

Perhaps some of you already experienced the frustrations. Listen to your child because he or she may face a true identity crisis when they get older and never give your child a reason to resent you down the road, even when you as a parent believe you are doing the best interest of your child, remember, you are not in your child’s footsteps. A true-life story to support what I just said; I come from a deaf family; yet, my parents never shielded me from a hearing world and still engaged in the deaf world. They could have kept me as a deaf child, instead of hard of hearing, they could have spanked me every time I try to talk, yet, they gave me a gift, a speech therapy from the day I crawled until I walked across the stage to receive my HS Diploma. They made sure I had both worlds instead of one world. The best gift I could ever ask for–because I had never experienced those horror stories that I’ve heard through the years–but my frustrations were nothing in comparison. I challenge you to be my parents, give your child access to everything.

As a deaf advocate and even in my role with sComm, (a company that manufactures and produces UbiDuo a communication device in real time captions) I heard a lot of  stories of little or no communication access being shared with me at every trade show I do. Every time I hear those stories, it breaks my heart and literally makes me cry. In other words, do not deprive your child of  communication access.

To avoid writing into a trilogy and wrapping it up, I have been and will always be a deaf/hard of hearing advocate. It has to be something worth believing in to advocate to assure one right’ does not get trampled especially with the disability community. I was fortunate enough to work at one of the largest Center of Independent Living, Paraquad, in St. Louis where I oversaw the Deaf/Hard of Hearing Program. I worked my way up to the Public Policy Department and learned how to fight the good fight with the legislators. I have given a presentation on “HOW TO BECOME A DEAF ADVOCATE” at National Council of Independent Living Conference, and won several awards for being a deaf advocate since then.

Being a Deaf Advocate is something that you have to learn to crawl before you can walk to become an effective advocate. There has to be a passion that instills in you in order to fight the good fight, even the bad ones. Being an advocate taught me to be a leader–to be able to walk with knives in my back and also to stand firm on what I believe. I have been an advocate for as long as I remember and regretfully, my days are coming to an end where I am ready to hang up hat up and pass down the torch and enjoy the last half of my life–but not just yet. I still got a couple of rounds left in me in the ring so let’s keep on fighting… I am now one of the five Deaf Certified American with Disabilities Specialists helping and educating your ADA rights.

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

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

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

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. 

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

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

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

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

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

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

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

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:

FB: www.facebook.com/mybattlecall
IG: www.instagram.com/mybattlecall

Valligideons.wordpress.com

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

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.

 

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail

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

Facebooktwittergoogle_pluspinterestmailFacebooktwittergoogle_pluspinterestmail