Posts Tagged ‘Deaf’

Valli Gideons: My Battle Call

November 7, 2018

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

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The Journey of Acceptance

October 24, 2018

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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Charles Wildbank: Deaf Mural Artist

October 8, 2018

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

August 23, 2018

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

By Scott Smith, Nebraska H&V

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

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

Disclaimer: I am not cool.

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

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

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

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

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

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Rosabel Agbayani: The Road We Travel TOGETHER

August 15, 2018

The road we travel TOGETHER: Our Family Journey

By Rosabel O. Agbayani, MPH

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Ashlei Powell: Creating Deaf Wearables

May 29, 2018

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


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


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

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

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

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

 

For more information on Deaf Wearables:

www.deafwearables.com 

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Autism or Hearing Difference? Tweezing out the Differences

May 4, 2018

By: Kristi Riley

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One of the big questions researchers have in the D/HH and autism world is, how do you tell the difference between hearing loss symptoms and autism symptoms? As a mom of a child with a severe hearing difference and a child with both mild autism and a mild hearing difference, I have gotten to see first hand what some of these differences may look like. I am in the process of earning my doctorate degree in clinical audiology at the University of Wisconsin-Madison. I am also a family trainee in the Wisconsin LEND Program (Leadership Education in Neurodevelopmental and Related Disabilities) at the Waisman Center, where I have learned about different developmental disabilities in children. I was recently trained through LEND on how to administer the ADOS. I have friends who are D/HH and friends who are on the autism spectrum. I can tell you for certainty that narrowing down the symptoms of hearing loss and the symptoms of autism is no walk in the park, and requires the subjective feedback from both parents who know the child best and the objective analysis of trained professionals.

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In 2012 when my daughter Lauralee was born, she failed her newborn hearing screening. Right away, we were whisked into bimonthly audiology appointments. Being music teachers at the time, my husband, Justin, and I were concerned not only about her ability to enjoy music, but her ability to gain access to language and literacy. If you can’t hear, you can’t speak. If you can’t speak, you can’t read. If you can’t read, then just about every subject that crosses your path is affected. (Who cares about aspirations of Julliard!) Learning to talk, read, then write affects every single subject in school. Lauralee was not officially diagnosed until 6 months old. She did not get her first pair of hearing aids until she was 11 months old. We were worried about her language development.

Lauralee has always been very alert and interactive. She has always made good eye contact and loved to play. She is goofy and is such a joy to be around. Even though she did gain the stereotypical “mama and dada” babble in the first few months, she mostly talked with her facial expressions. I decided to get the Signing Time DVDs, and she and I soaked-up sign language. It was like we had our own “secret language”. I always felt like we had a deep connection. Sometimes, I seriously questioned whether she was truly deaf or if it was all a big mistake!

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In 2014 (right after I started my path to audiology), we had our son, Oliver. He was such a beautiful baby and I was ecstatic to find out he passed his newborn hearing screening. Even though he had a short NICU stay after he was born, he ultimately seemed healthy in every way. When we brought him home, right away I noticed he was a little different from Lauralee. He was fussier and cried a lot. I chalked it up to being a different personality. Besides, I was a fussy kid too! I’ll never forget, at around 7 weeks, I was holding Oliver in my lap attempting to do face time. He would not look at me nor smile. He seemed so disconnected. I would force my face into his gaze until I got a reaction. But ultimately, I did not connect with him like Lauralee. I felt guilty.

When Oliver was about 3 or 4 months old I started subbing at a local daycare. Oliver stayed in the infant room while Lauralee was in the 2-year-old room. Lauralee was immediately the “favorite friend”. Kids would follow her around because she was so expressive and out-going. She caught-up academically and knew all her letters and sounds by the time she was 3. Oliver, on the other hand, was making minimal progress. He had little ticks like “twinkle hands” when he was curious, leg tensing and screaming when he was excited, and head shaking when he was bored. He did not learn to sit until he was over 10 months old.

When Oliver was around 12 months old, I contacted birth-to-3 about my concerns. He started receiving OT services right away. Weeks went by and Oliver did not learn to walk. He resisted every idea the therapist had. One night while crying my eyes out, my husband told me about this place called the Wisconsin Early Autism Project. I doubted autism because Oliver was gaining language and had okay eye contact but I went along with the idea just in case…

Two summers ago, I realized Oliver was saying “what?” a lot. Sometimes he would ignore me all together. He had not yet started autism therapy, and I wondered if it was his hearing. On a last ditch effort to prove it was NOT autism but something else, I asked my professor if we could test him. She agreed.

Testing day was a nightmare and an absolute embarrassment. Oliver screamed bloody murder in the sound booth and was ultimately untrainable. We waited six months and got a few frequencies. We waited another couple of months and got a few more frequencies- my professor is amazing! Ultimately, it looked like Oliver DID have a mild hearing loss in one ear (which newborn screenings do not catch). (YESSS!) We confirmed objectively through ABR over the summer. Even though he had a mild loss, my professor made the point that the loss would not affect his language development nor his behavior. The autism diagnosis stuck. (Darn.)

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I have finally come to terms with Oliver’s diagnosis. I don’t know why it took me so long. Maybe because there is a stigma about autism or a stigma about children with “poor behavior”. Lauralee made me feel like an amazing mom. Oliver challenges me every step of the way. Looking back, there’s no doubt Oliver has the right diagnosis. And to tell you the truth, he’s a good little boy.

Both autism disorder and hearing disorders are a spectrum. Every case is different. Someone could have the exact same audiogram as Lauralee but be affected more. There is so many intricate connections between the peripheral hearing system and the cortical synapses in the brain where hearing and cognition happen that something could go haywire at any point along the auditory pathway. Some one could have mild autism like Oliver but have a completely different set of abilities or behaviors affecting everyday life. Because of all these factors, it’s hard to truly come up with a set of “symptoms” that separate autism and hearing differences.

Maybe rather than separating the disabilities as two separate entities, maybe hearing loss is a symptom of autism. Autism on a basic level is caused by sensory wiring differences in the brain. There have been several studies showing the autistic auditory pathway is wired differently from the neuro-typical pathway. Perhaps hearing differences, whether peripheral or cortical, are a common symptom of autism. But the social insufficiencies that are commonly associated with autism do not translate to a person with deafness.

People who are deaf but given adequate language access through sign or otherwise, develop socially normal. Yes, a person may have to grab their attention differently but ultimately a deaf person is very socially aware. Autism can make a person seem “deaf” because they lack social cues like eye-contact and quick verbal responses. Neuro-typical people with deafness do not lack these social differences when given the chance to communicate. You can see it clearly in my children, but we are only one example on the entire spectrum.

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The Cornerstone of Parent Choice

April 2, 2018
Most recently, we have been asked to clarify our position on parent choice. Supporting parents in making their own informed choices for the child they know best is central to everything we do.
 
The Cornerstone of Parent Choice
By Karen Putz,
Co-Director of Deaf/Hard of Hearing Infusion
Hands & Voices
 
In my very first job right out of college, I informally took on the role of being a mentor to a family with a toddler who was deaf. I had no formal training, other than my own experience of growing up hard of hearing, becoming deaf as a teen, and learning American Sign Language shortly after. That first experience of working with families was so enjoyable for both the family and for me that I began to get calls from more and more families. I happily provided mentoring support, even though my primary job was structured toward independent living for teens and adults.
 
Then I got a call that would change my life and eventually lead me formally down the path of parent support…
 
A mom called to ask for support services and resources. She had just found out her six-month old daughter was deaf. I debated whether to take the appointment, for I had just turned in my resignation letter to stay home with my own newborn baby. Since the family lived near my home, I took the appointment.
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I ended up mentoring that family on my own out of sheer passion for the work. We held sign classes in her home and the neighbors joined in. We mentored other families together. In an ironic twist, this mom was also there to support me when my toddler became profoundly deaf two years later. It was that moment that my journey became personal–now I was the mom of a deaf kid. Everything shifted in the way I provided support from that point on, because I was now walking down the parenting path with my own experiences. My husband and I were now facing the process of choices and decisions we had to make for our child (and the two that followed).
 
And that changed everything.
 
As a parent, we are responsible for all kinds of decisions for our children. My husband and I soon learned that NOT making a decision was a decision in itself–and we had to own the consequences of that path as well.
 
In 2004, I stumbled upon Hands & Voices while putting together a website for parents in Illinois. The minute I read the description of the organization, I knew it was a fit for our family.
 
Who are we? We are parents of ASL signers, cued speech users…. parents of kids with cochlear implants or total communicators… we are people who have common interests connected through the community of deafness. Hands & Voices is a safe place to explore options, get unemotional support (although we can be emotional about it!), learn from one another and share what we have in common. We value diversity and honor the role of parents and family as the single greatest factor in raising a WASK (our favorite acronym: Well-Adjusted Successful Kid).
 
“There is room in the community of deafness for an organization like Hands & Voices, and in fact, I think parents, and even many professionals, have been crying out for a group like this,” says Leeanne Seaver, Board member. “Somehow parents connecting to other parents provides an element of credibility; there’s a level of ‘knowing & feeling’ that only a parent experiences. And parents, especially parents of babies newly identified with deafness or hearing loss, need a way to connect like this without being wary of a sponsoring agenda from a service provider.”
 
Hands & Voices is a nonprofit, parent-driven organization dedicated to supporting families of children who are deaf or hard of hearing. We are non-biased about communication methodologies and believe that families can make the best choices for their child if they have access to good information and support.
 
Everything about the organization matched what I felt was most needed. Parent choice. Support for diverse communication options. Coming together for common causes. Support by parents for parents on the parenting journey.
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It is now many years later; my kids are now young adults. I’ve been a board member, a founder of a state Hands & Voices chapter (along with the parent I previously mentored), and I am now working as staff. Through the years, we’ve remained steadfast in our mission and vision to provide support to parents on the journey. We work with a diverse group of parents from all walks of life and all different stages of their journey.
 
From time to time, we are asked for our position on a variety of topics. Most recently, we have been asked to clarify our position on parent choice. Supporting parents in making their own informed choices for the child they know best is central to everything we do. When it comes to the parent’s right to choose, we stand firmly behind this concept:
 
Parents not only have the right to choose language and communication modality for their child who is deaf or hard of hearing, they have the ethical, legal and moral obligation to do so. Furthermore, the research proves that the single greatest indicator of a DHH child’s eventual success—regardless of which mode or method of communication is used—is the meaningful involvement of his or her parents. The goal is to make that involvement authentic, effective and informed by the wisdom that so many have to share from direct experience…parent-to-parent, deaf or hard of hearing adult to parent, and professional to parent.
 
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The parenting journey is filled with twists and turns. As a mom of three kids, I’ve experienced this firsthand. As a Deaf Mentor in early intervention, I’ve had the honor of being a part of a family’s journey often from the beginning. As a staff person with Hands & Voices, I’ve had the opportunity to work with a variety of families negotiating this journey around the world. I’ve seen it time and time again–even in the midst of difficult situations and trying times–there’s so much more that unites us than divides us. We must continue to focus on the common goal: building an informed community surrounding parents so they can nurture the seed of potential in every child.
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Clare Patterson: There is Beauty in Everything

March 6, 2018

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It is strange how the human brain doesn’t notice slow disappearances over time. Sure, our brains are well attuned to rapidly changing conditions but woefully inept at noticing small changes.

My life so far has been a string of “un/lucky coincidences”.

This is why I wasn’t diagnosed with hearing loss until I was 18 and a first year student at a selective liberal arts college.

Rewinding a bit, when I was born in 1986 there was no newborn hearing screening. My parents thought I was “advanced” because by 6-8 months I would mimic adult conversations except I didn’t make any sounds.

School came around and I was lucky that my neighborhood school had Deaf and HOH integrated mainstream program. I began learning ASL when I started kindergarten.

I needed years of speech therapy, yet my hearing wasn’t tested. I remember emerging from the city mandated eye testing in tears because I failed so horribly that the lady administering the test tapped me on the shoulder and told me I was “supposed to be looking for the numbers”. What numbers? And how telling was it that she had to tap me on my shoulder to get my attention?

The first hearing test I remember having was in 5th grade. Until then I had excelled in all my classes and had been in special education for both speech therapy and gifted classes. All my classes except the very small gifted class had interpreters. I really don’t remember how much I relied on them but it was enough that when I transferred to a private school for 6th grade, I noticed a distinct change in my social life.

The middle school social milieux absolutely revolves abound inside jokes and I was lost. The disparity between my public school and private school was so pronounced that I and the other two “scholarship girls” in my grade had tutors for between a year and 4 years each. I had a formal tutor for one year.

Eventually, and with the help of amazing teachers, I became a great student at one of the best college prep schools in the South. I started winning awards for Latin (I refused to take a spoken language because I’ve always had trouble pronouncing words), art, writing BUT I was alone in my own world. I ate lunch alone daily, often venturing outside even in the cold so that I wouldn’t be so conspicuously out of place.

Class size was so small that I could keep up in class but where the real action of an all girl’s high school happens in whispered jokes and quips.

I missed all of those and looking back, despite our school being located in an Episcopalian church, when I was on those awful training runs for soccer or lacrosse, or walking to my friend’s house a few blocks away, the ringing of the bells on the half hour and hour just disappeared. One time when walking with my friend Connor to her house barely a mile away, she mentioned that it was “3:30”. “How the heck do you know that? You refuse to wear a watch!” I implored, incredulous that she thought she could tell time without a watch. She slowed down her walk and said “the church bells just rang!”. “Oh, yeah. They did”, I replied sheepishly but my stomach was in knots realizing that just a block or two from school, I couldn’t hear the bells, the ringing of the bells.

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Like all things good and bad, high school ended. I had received a full scholarship to my number one college choice far, far away from my home.

I moved, with many unexpected tears, to a small liberal arts college quite literally in the middle of a cornfield in rural Iowa. Within my first month I had gone to the nearest “city” (more like a town with a K-mart AND a Walmart) and was diagnosed with mostly flat sensorineural hearing loss that was moderate. Hearing aids were ordered, during fall break I came back home and saw a big city ENT doc who repeated the hearing test and did a CT scan looking for any other explanation for my aberrant test results but, the results were accurate, the new ones were even a bit worse. I had moderate SNHL (sensorineural hearing loss). My parents started piecing together anecdotes from my past. My mishearing of song lyrics, the utter lack of skill needed to sneak up on me, my seeming inability to be social at large family events.

When I returned to school my three best friends borrowed a car to drive me to the audiologist nearly an hour away for my brand new BTE (behind the ear) hearing aids to be fit. They took advantage of the shopping in a town twice the size of our college town while I discovered that paper rustling is an annoying sound and why people were always annoyed when I clicked pens. I was absolutely aghast that paper made noise and pens clicking was actually annoying.

That was all in the first semester of college so for most people I knew, me having hearing loss was normal. My college purchased an FM system for me, back when the advanced FM systems consisted of two boxes, and I did the awkward “drop off the prof’s box and mic before class and hope they notice it”.

By my second year in college my friends began noticing that I wasn’t hearing as well as usual and that my speech had become “blurry”.

I got a ride with a friend to the big town and found that my hearing loss had dropped to “severe”. My hearing aids were turned up and I could hear most things again. Life, as it always does, went on.

The next year I just borrowed a friend’s car and drove through the aftermath of a midwestern blizzard with snow piled higher than my lanky (at the time) 5’8.5″ on either side of the back roads I had to take. I didn’t take a friend this time, I knew that I had woken up one day almost completely deaf. Some of it seemed to come back but it was tenuous. I came back with my hearing aids maxed out, I turned on my borrowed car not realizing how loud I had the music for the ride up and that there was music playing in the borrowed car. Driving back I was disoriented, not by new sounds as I had been a few years earlier, but by how distorted things sounded. I spent the rest of my spring break at work fixing computers, or in bed. I watched as the snow blocked off the walkways from my dorm to where I worked across campus. The snow lasted longer than usual and piled up to two feet on my small prairie campus.

I could only scoff when people spoke about “hearing the snow fall”. What other BS did hearing people make up?”

I finished college and went on to work in infectious disease research while my hearing slowly dwindled. I still loved music but I only listened to bass heavy music. It was my ritual to remove my hearing aids at the end of the day, turn on Jimmy Cliff and turned up the volume until the bass thumped in my chest like a second heart beat.

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I then went to graduate school and in the January before my April thesis defense date I received a cochlear implant in my right ear. I was activated on Valentines Day 2014 and was overwhelmed by sounds I had never heard before. My audiologist was pretty certain that I had never had normal hearing. I went back to my apartment and put on a DVD of my favorite TV show just to have some sound other than roaring tinnitus. I went to work on the final draft of my thesis (“The Utility of Autologous Stem Cell Transplant in Newly Diagnosed Type 1 Diabetes: Reversing Autoimmunity and preserving Beta Cell Function”). While doing statistics I suddenly laughed. I looked up and saw the TV with captions, as always, on. I then paused the DVD and went back and replayed the previous scene. I couldn’t tell the difference between voices or really what words they were saying but somehow I heard the joke while reading the captions and laughed again. I understood speech after nearly 10 years of profound deafness. It was awkward, helium sounding speech but I heard it! I decided to have speech I was familiar with in the background for all the hours I was awake. Soon, I could tell the difference between male and female voices and then between different female and male voices. I defended my thesis, after much practice with my advisor on how to say “statistically significant” and was able to hear the questions from my professors well enough to, with a bit of guess work, correctly answer their questions. I also presented my research at the annual “Research Day” and even in a large open space with abysmal acoustics, I was able to answer questions about my poster. It was by no means easy but I did it.

Now I’m in the midst of applying to medical school. I’ve worked in a busy urban ER for the past few years and I’ve fallen in love with Medicine. I wrote the piece below two years ago. I think it illustrates the joy of new sounds:

You know that thing people do when a lightbulb goes out? The unceremonious unscrewing of the bulb and the shaking of it next to an ear?

I honestly never knew why people did that, I remember doing it as a kid, hearing nothing and replacing the bulb with a new one.

But just now, a light bulb went out in that spectacular millisecond of a brilliant bursting flash.

I reacted as always, unscrewed the bulb and held it to my ear and shook it. Nothing, normal, you shake the bulb, I don’t know why, maybe to make sure it is dead? Who knows? People do weird things.

Then I tried my right ear, the one with a cochlear implant.

I must have looked like a maniacal child just standing there shaking a bulb and laughing.

It makes a sound. You guys, it makes a SOUND! A beautiful sound. A sound of distant church bells ringing out (The ringing of the bells. The bells, the bells.)

It’s a tinny sound, an echoey sound. You can hear the little tungsten coils bouncing around, you can hear when they settle at the neck of the bulb and that sound is different from the sound they make leaping off the sides of the rotund side.

Did you know that makes a beautiful sound? It does.

I’m still smiling. I heard something that I don’t think I’ve ever heard in my life and it was beautiful. It was mundane and everyday and boring to most, but it sounded so beautiful to me.

There is beauty in everything. Sometimes you just see it for the first time and sometimes you need to be surrounded by darkness to see light of a burned out bulb.”

I’m still D/deaf. A cochlear implant is a tool and an imperfectly perfect tool. I still sign when I want and occasionally use an interpreter but I can hear things I’ve never heard before.

 

Clare Patterson

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Ellie Parfitt: How I Became Known as the Deafie Blogger

February 1, 2018

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My name is Ellie Parfitt and I’m known as The Deafie Blogger.

I was born with a bilateral profound sensori-neural hearing loss, into a hearing family who had no experience of deafness. It wasn’t until I was 9 months old that I was diagnosed, and I received my first hearing aids at 10 months.

My family decided to try and teach me to speak, rather than sign language because they had no knowledge of deafness or family members who were deaf. They didn’t receive much advice on communication choices. My Mum was struggling with the diagnosis, even to the point of not accepting it, so speech to her was the only choice at the time. Nowadays, there appears to be a lot more information, so hopefully a family can make an informed choice, what is best for the child and the family.

It was only years of constant repetition, support from my Teacher of the Deaf and Speech Therapy sessions that I’ve managed to get my speech to where I am today.

I attended mainstream Primary and Secondary School. I was the only deaf girl at school, which meant engaging with my hearing peers was difficult. I was a fun, sociable person and was always up for making new friends. However, being among hearing teens meant that society was quite judgmental. There were times that I came home from school upset, because my friends left me out of group conversations. My amazing Mum kept telling me that they’re not worth it, and to focus on school work and they might not be the right friends for me.

Although I had a Learning Support Assistant/Notetaker at school, all the time after school and at weekends were spent catching up on school work and going over things I didn’t understand. Eventually, all the hard work and determination pulled off and I am so proud of the grades I achieved, including top grades in German and Media Studies.

Looking back, I’d love to tell my teenage self that all that work has paid off and those so-called ‘friends’ weren’t worthy of my time or friendship. Now, I have jobs that I love and true friends who actually care about me and are accepting of my deafness.

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In 2015, I became quite frustrated of life with a hearing loss, the challenges and obstacles that I kept facing. I was looking for other deaf role models to see if I could read anything to help me, but I couldn’t find that person. I also desired somewhere to express my thoughts, so my boyfriend suggested writing a blog.

That’s when ‘Deafie Blogger’ was born. I write about my life as a deaf person, different experiences and challenges that occur, and how I overcome obstacles. I noticed that people were commenting on my blogs of how they could relate to my experiences and that they were glad they weren’t the only one. This motivated me to keep on writing and inspiring deaf people.

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I got invited to deaf events and presentations, and I realised that some deaf people were signing to me, but I didn’t understand what they were saying! I was then intrigued about the language and I joined a class to start learning British Sign Language. Even the little signs I know, I’m able to have a small conversation with some people which is quite rewarding.

As well as working in Marketing and blogging in my spare time, I love campaigning for deaf rights and raising deaf awareness everywhere I go.

Living with a hearing loss can be challenging at times, but it’s important not to let it stand in the way of achieving your goals. My motto is: ‘Deaf people can achieve anything they dream of, given the right support!’

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You can read my blogs here: www.deafieblogger.com

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