Category: HLAA

Hearing Loops Come to Oshkosh

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Juliette Sterkens
Juliette Sterkens

Hearing Elmo welcomes guest author, Juliette Sterkens. Juliette Sterkens, AuD is a Wisconsin audiologist with 30+ years of experience in the field of audiology and hearing instrument fittings.  Dr. Sterkens is currently on a sabbatical from her audiology practice to speak around the country to consumers and hearing care professionals on the use of hearing loops in behalf of the Hearing Loss Association of America.  Her efforts have leveraged nearly 300 hearing loop installations in the Fox Valley and Wisconsin and many more beyond. She is the creator of the www.loopwisconsin.com website and her blog at http://loopwisconsin.wordpress.com .  She has received the Wisconsin Audiologist of the Year, the American Academy of Audiology Presidential Award and the Humanitarian of the Year Award from Arizona School of Health Sciences for her work on a local, state and national level.

Chris Prust of Oshkosh is one of 36 million Americans with a significant hearing loss.  Although she wears a hearing aid and a cochlear implant, it is still difficult for her to clearly hear and understand amplified speech in churches, auditoriums, or meeting rooms.  As a member of the Algoma Boulevard United Methodist Church in Oshkosh, she was delighted at the results the first Sunday the church turned on its new hearing loop system.  “I’m home now and can’t stop smiling.  The system went way beyond meeting my expectations.   I was in awe.  I thought I would never again be able to experience a church service where I could hear every world and be able to follow along with the music knowing I was singing the correct and note and verse,” Chris said.

A hearing loop takes a signal from a sound source — a television or a public-address system, for example — and transmits it through an amplifier to a wire that surrounds (“loops”) the audience. That wire sends a magnetic signal to a person’s hearing aid, which has a telecoil, a type of sensor. The hearing aid wearer then gets a direct, clear signal, one without interference from reverberation and crowd noise.

Hearing loops are most commonly found in auditoriums, concert halls, places of worship and lecture halls but  new applications make it useful for ticket booths, taxis, tour buses, service desks and airport gates. While public installations require a trained installer, a TV or computer can be self-installed by a handy individual. Hearing loops have been in widespread use in public venues in England and the Scandinavian countries for some time, and are now starting to catch on in the United States. (See www.hearingloop.org)

Jim and Vicki Denzin, parents of three daughters, two of whom use hearing aids, are grateful that St Raphael Catholic Church in Oshkosh has installed a hearing loop. “Our girls are now able to understand Fr. Doug so much better” they commented. So pleased were they with the hearing loop technology they also installed a system in their Neenah home. Jim commented installation only took an hour and was not hard to do. Vicki reports her girls love using the loop in the TV room but is also quick to point out that it makes it easier for the girls to ignore their mother when they are watching TV. The loop has one other downside Vicki laughs, “The loop broadcasts to other areas of the house including the upstairs which meant we quickly learned to turn the loop amplifier off when it is bedtime, otherwise they pick up the TV’s audio while in their bedrooms!”

Hearing loops make public facilities accessible for people with hearing loss and brings them in compliance with the Americans with Disabilities Act. In the Fox Valley many libraries, nearly a hundred large churches, the Fox Cities Performing Arts Center, the Oshkosh Convention Center, funeral homes, the Grand Opera House and several retirement communities and senior centers all have taken the initiative to install hearing loops to better serve people with hearing loss.  A list of loops of loops around the country  can be found at www.aldlocator.com

“It is not because the sound is not loud enough, that people who have hearing loss complain that they can’t hear” said audiologist Dr. Juliette Sterkens, an Oshkosh audiologist at Fox Valley Hearing Center, who is on a sabbatical from her practice to
serve as the Hearing Loss Association of America’s hearing loop advocate, “it is because the reverberation and background noise in large rooms and churches make understanding very difficult for persons who use hearing aids. A hearing loop helps to overcome this problem”

Sterkens started a Hearing Loop Initiative in early 2009, similar to an initiative in Michigan (see www.loopwisconsin.info) and today nearly 300 hearing loops can be found around the state.  Sterkens continued “Hearing loops can profoundly affect people who use hearing aids.  When Chris Prust told me that the day the hearing loop was turned on at her church, was one of the most memorable moments in her life because it made her feel “normal’, we both cried a few tears.”

– Juliette Sterkens, AuD

———

 

It’s the Little Things

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Deborah is a bilateral cochlear implant recipient. She experienced familial progressive hearing loss, which presented at age 10. Her first ear was implanted in 2005, the second ear in 2008. A native New Yorker, she presently resides in the central Piedmont of North Carolina. She is involved with HLA-NC, is a volunteer at the Wildlife Rehab Center of the NC Zoo, and is a board member of the Brain Injury Association of North Carolina. In her spare time she takes courses at the local college, and enjoys walks and photography in the nearby Uwharrie National Forest. 

I love being out in nature, taking long walks and observing the world around me. I often capture some of what I see with my camera.  Trees, sky, colorful blooms, rivers and streams, rocks, fungi, ferns. All are a delight to my senses. However, there is nothing I enjoy photographing more than bugs. Yes, bugs. From the stingers to the crawlers, the colorful to the camouflaged, the loners and occasionally those in flagrante delicto. From the time I was a young girl, I loved the outdoors. When my family and I still lived in the city, you could find me in the back of the apartment building, climbing a small fence so I could wander around the grassy patches that remained among the asphalt yard. When we moved to the suburbs, on a dead end street that had many acres of woods adjacent to it, I was delighted! This was still a time in our culture where folks were not so afraid to let their children run around the neighborhood, playing at friend’s homes and backyards. I chose to run around in the woods, usually by myself. I was not yet so hard of hearing that it was a concern, nor was it an explanation for why I preferred solitude. I am still this way today.

I’ve been thinking a lot about how my love for observing and photographing bugs ties in with my experience as a cochlear implant recipient. I was recently in New York for a visit, and one day a friend and I went to visit some museums. She, an artist and therapist, had been curious about my fascination with bugs. As we all know, bugs do not have a great reputation. Much time and resources goes into controlling or eradicating them. No one had ever asked me about this, and I can honestly say I’d never really wondered. I thought about all the people who seem to hate these fascinating beings! Nevertheless, my response was immediate and striking to both of us: it is in the little things that we learn the most about life. The whole world can be found in one of those little creatures. From the smallest of them we can receive the greatest lessons. When I observe a spider building a web, or an ant carrying an object many times its own body weight, and when I consider the role that each bug plays in the scheme of life, I am awed and humbled.

Seemingly Inconsequential

It is the seemingly inconsequential experiences of hearing with my cochlear implants that offer the most striking images of the radical impact that “hearing again” has had on my life.  When I mentor someone who is considering getting a cochlear implant, I have found that sharing the smallest CI moments, such as the one that follows, best illuminates the impact of the ability to hear with the technology.

Six months post activation of my first cochlear implant, I was driving across Colorado to visit with clients I served in a statewide program for individuals with traumatic brain injury. I made a stop at a gas station, and went inside to buy a soda. It was a busy time, and the gal at the register was moving customers through fairly quickly. We spent about a minute together as she rang up the purchase, collected my money and made change, made a joke about the crazy weather we’d been having which made us both laugh and to which I offered a humorous rejoinder. (No, I don’t remember what it was anymore, but she thought it was funny, and that’s all we need to know J ). She wished me a good day and I left the store, still smiling over our enjoyable interaction. Suddenly, a realization hit me with such force that I came to a complete standstill: I was able to have a quick, light-hearted interaction with the girl at the gas station. Tears welled up in my eyes, and I was half laughing, half crying: I had joined the living. Before I could hear again with my cochlear implants, my days were filled with experiences I call “smile and get the hell out of there” moments. If you are not hard of hearing, you cannot imagine how difficult it is to read the lips of everyone encountered each day. Struggling to accept that along the way I left any number of people with the impression that I was very pleasant but a bit slow was a fact of my life. But now I was one of those people who could banter, who could have lots of marvelous little interactions with people if I so wished, and I recognized right then the enormous impact this was going to have on my quality of life. I am sure that until that moment I had not fully comprehended that this is what people do, this is what is meant by “small talk”. It wasn’t long before I realized that I could also eavesdrop. LOL! To my hearing friends I say: Don’t act so shocked! You do it all day long and don’t even think about it! Six years hearing again and I can confirm that it’s not all brilliant commentary. But I like being able to decide that for myself.

So, the next time you see a little bug, think of me, and stop and watch it for awhile. If it’s in your house, don’t stomp on it. Scoop it up and put it outside, and observe it. Discover all those insights and life lessons right in front of you, free of charge.

Guest Writer, Deborah Marcus

© 2012 Personal Hearing Loss Journal

Why I Love Winter

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The woods near our home without their usual foliage…

(PART ONE OF FOUR)

Chloe and I took a walk after lunch today. I had to smile as I saw the snowflakes falling softly around us even though it wasn’t cold enough to “stick”. I just love winter. I love actually getting out IN the cold weather as well. I love bundling up and walking briskly – something I can do even with Meniere’s as my symptoms are usually much more mild in the winter. I love being able to see my breath in the air and being able to smell various fireplaces in use in homes as I pass. However, one of the biggest reasons I love winter might surprise you. As a person with hearing loss, one doesn’t expect to enjoy QUIET.

Winter Can Be So Quiet

When walking, many people are inside where it is warm. So in the wintertime, my walks are often much more quiet than when I go during other seasons. I love the quiet. Don’t get me wrong! I love being able to hear, but I hear best when it is quiet. Am I contradicting myself? (BIG GRIN). Eh… maybe.

Hearing with a cochlear implant is a mind-boggling thing. I hadn’t expected to hear this well again this side of Heaven. When my husband and I realized that my progressive hearing loss would ultimately mean I would not hear at all, we were concerned. Thankfully, through the support and relationships of the Hearing Loss Association of America, we learned that being late-deafened does not necessarily mean the end to hearing. We learned about cochlear implants and I took almost three years researching and “talking the much needed ears off” numerous cochlear implant recipients. As thankful as I am for my cochlear implant, it does not mean that I now hear perfectly. As a matter of fact, I become a little aggravated when people act as if my cochlear implant “fixed” my hearing. Yes, I can hear. But it’s a different kind of hearing, and one made more difficult when trying to understand speech in the midst of noise.

So I love the quiet. I hear better. When walking, as the world around me is more quiet compared to other times of the year, sounds that are present are crisp and clear. If it is quiet on our walks, I can actually hear much of what Chloe is hearing.

Chloe can HEAR the squirrels even though she hasn’t yet spotted them…

I love listening to nature. I pick up many more sounds in the winter because of the quiet. The lack of foliage also assists in allowing sound to carry. In some spots of our neighborhood I can even enjoy an “echo-like” effect in the world around me.

We Need the Quiet

I have had numerous late-deafened folks tell me that they too, go “deaf” on purpose. For those of us who are thrifty, it saves on battery life. However, for many it is simply a matter of being mentally fatigued. It takes a lot of effort to understand and communicate using technology and speech reading. People with hearing loss must employ a number of senses to communicate. Those with normal hearing are not required to use much more than their sense of hearing to communicate. I believe this is part of the reason I need 8-10 hours of sleep a night. (Yes… you read that right!) I am mentally exhausted at the end of every day just because I’m communicating with family, friends, and co-workers. It takes work to hear! Listening requires active participation for those of us with hearing loss.

The forest is sleeping during the winter…

When there is a great deal of background noise, I don’t hear well. As a matter of fact? There are times I don’t even try. Case in point… my church:

 

Want to know the noisiest part of every church service? I think it is before and immediately after the actual service. Or, how about when the pastor or minister of worship says, “Everyone take a few minutes to meet and greet those around you!” ? AAAARGH! I try to make myself invisible if you must know. I am petrified someone will come and talk to me because I know I won’t hear them. I’m getting better though when someone approaches with their hand out and a big smile. I’m taking a risk but “betting on” that they are saying, “Hello, how are you today?” I have learned to smile, shake their hand and say a simple “Hello!” My preference in communicating is definitely one-on-one.  I do really well – IF – it is in a quiet atmosphere.

But you know something? My exposure to multiple disabilities at Fidos For Freedom has taught me one very important lesson. We could ALL do with more “quiet” in our lives. Quiet can foster introspection – and friends? I’m big on reflection, meditation, and soul-searching! For many of us, we face many physical battles on a daily basis. We really NEED quiet time. Contemplation may provide us with resolve, a new “plan of attack”, time to absorb new information about our disease/disability, and the ability to recuperate emotionally and mentally. As a person of faith, it is my quiet moments that I can humbly ask for guidance or assistance… or scream for help!

It is often when we are quiet that we can plan and “gear up” for the journey ahead. Victor Hugo said, “One is not idle because one is absorbed. There is both visible and invisible labor. To contemplate is to toil, to think is to do. The crossed arms work, the clasped hands act. The eyes upturned to Heaven are an act of creation.” For some of you, life’s journey requires a little planning. I have a friend who cannot do anything spontaneously. Errands are planned, cleaning specific rooms of the house are planned a whole day in advance. Errands rely on the goodwill of family and friends who are willing to cart her “here and there” as her eyesight has deteriorated. Cleaning is done when the body isn’t on “strike”. Lyme’s and Chronic Fatigue insist that she double-up on recipes when she has enough energy to cook. That way she can freeze things so that she doesn’t go hungry on days she cannot cook meals. She requires a lot of quiet time. For her… it’s not a communication issue. She needs time to plan and to take strategic steps in organizing as best she can her journey. She even needs quiet time to COPE with her disease.

Winter allows me more quiet time. Outside – fewer people are out and about. Inside – family members at home tend to curl up and do quiet things on their computers or may catch up on reading. Like hibernating bears they tend to sleep more. Co-workers are quieter during the winter. Hubby says it is because of S.A.D. Who knows? I do think winter generates a feeling of “quiet” in many people.

I encourage you to find more quiet time. Winter, spring, summer, or fall – the season isn’t important. Finding time to be QUIET and use the time wisely is important to all. Even if you use the time for a power nap…

Denise Portis

©2012 Personal Hearing Loss Journal

Lipreading Mom

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I can’t remember when I first “happened” upon Shanna. I do know I “bumped into” her online through her blog when she was writing “Lip Reader: A Novel by Shanna Groves“. I was excited that a hard-of-hearing woman was writing a book that had characters that were late-deafened.

Since that time, Shanna has become very active in the Hearing Loss Association of America and has worked hard to bring captioning to theaters in her area and to raise awareness in her community. I encourage you to check out Shanna’s website HERE. An active blogger, Shanna writes from her heart.

Shanna can also be found on Facebook HERE, and Lipreading Mom has their own page HERE. Below is some information about Shanna! Enjoy!

Denise Portis

© 2011 Personal Hearing Loss Journal

I am Shanna Groves, but you can call me Lipreading Mom.

Ten years ago, give or take a few months, I had my first child. While cuddling, burping and kissing on my baby, my ears rang like crazy.

No problem, the doctor told me while I strained to hear him. You’re just going deaf. You need hearing aids.

That’s not exactly what he told me. The doctor used the term progressive hearing loss. Same thing as going deaf.

I walked out of that medical office with my head spinning. No way in heck I was going to wear hearing aids.

Me. 27 years old (at the time). Fresh off of maternity leave. A new job. My hair cut as short as singer Chynna Phillips from her Wilson Phillips’ days. Not a flattering haircut with behind-the-ear hearing aids that plugged into my visible ears like electrical cords.

My first confession as a lipreading mom:

I DON’T ALWAYS PAY ATTENTION TO WHAT  DOCTORS TELL ME.

Hearing aid wearing mom? Not me, no way. Back then, I’d rather have dyed my hair purple with pink polka dot highlights than worn chunky electronics in my ears.

I blew that doctor off.

Two years later, my son was old enough to talk. A lot. I had every reason to hide my ears from him. I couldn’t understand a word he said unless it was at piercing scream-level pitch. No more cooing and cuddling for us. It was Hard of Hearing Mom versus Screaming Child.

I went back to the doctor.

You still have those hearing aids, I asked him. ‘Cause I need them more than ever now.

That day, I finally accepted my hearing loss.

Now that I have three children ages 3, 7 and 10, communication depends on my acceptance. I must remind my kids to look at me so I can lipread them, speak up and repeat their words slowly.

I am a Lipreading Mom, not just Mom or a Lipreader. Both aspects must find a way to live together.

Come along on the ride with me.

Walk4Hearing – Washington DC – November 6th

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Sponsor Me for the Walk4Hearing

Dear Friends and Family:

At the age of 25-years-old I began to lose my hearing. Over the following 12 years, I would eventually go completely deaf. I now hear through the miracle of a cochlear implant, and the Nucleus Freedom changed my life in allowing me to “hear again”.

If not for the intervention of a friend who invited me to my first chapter meeting of the Hearing Loss Association of America, I would have never learned that there IS LIFE after hearing loss.

Your support goes to help HLAA both on the national and local levels. This support will help them continue to provide assistance and resources for people with hearing loss and their families to learn how to adjust to living with hearing loss. HLAA is working to eradicate the stigma associated with hearing loss and raise public awareness about the need for prevention and the importance of regular hearing screenings throughout life.

Your support also will help HLAA continue to influence communication access, public policy, research, public awareness, and service delivery related to hearing loss. Its national support network includes an office in the Washington D.C. area, 14 state organizations, and 200 local chapters.

My team (Frederick Hearing Loss Advocates) is walking for one of these local chapters, the Frederick County Chapter in Maryland. Please know that even the smallest donations add up to help us reach our goal. Thank you in advance for helping in my goal of raising money and creating awareness about hearing loss.

Click here to visit my personal Walk4Hearing page and find links to securely donate online: Denise Portis

Sincerely,

Denise Portis

and Chloe (Hearing Assistance Dog)

A link to my cochlear implant activation: Click here

Reflections on National Invisible Illness Awareness Week

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According to the Invisible Illness Awareness website, the following statistics are true:

  • Over 100 million people in the U.S. have a chronic illness;
  • 20.6 percent of the population, about 54 million people, have some level of disability;
  • 9.9 percent or 26 million people had a severe disability
  • 1.8 million used a wheelchair
  • 5.2 million used a cane, crutches, or a walker
  • So that is less than 6% who have a visible illness.
  • There are many illnesses that start out being invisible and as the disease progresses it becomes more visible.

Also note that:

  • 26 million persons were considered to have a severe disability;
  • yet, only 7 million persons used a visible device for mobility.
  • Thus, 19 million of the people who were defined as severely disabled, did not use a wheelchair, cane, crutches or walkers.
  • In other words, 73% of Americans with severe disabilities do not use such devices.
  • Therefore, a disability cannot be determined solely on whether or not a person uses visible assistive equipment.

U.S. Department of Commerce (1994). Bureau of the Census, Statistical Brief: Americans With Disabilities. (Publication SB/94-1).U.S. Department of Commerce (1997). Bureau of the Census, Census Brief: Disabilities Affect One-Fifth of All Americans. (Publication CENBR/97-5).

Why Do I “Plug” Invisible Illness Awareness Week?

I have been trying to raise awareness about this week for three years now. This year, a friend noticed my “don’t miss” posting on Facebook and couldn’t resist teasing me about it. After all, I don’t exactly allow my challenges to be INVISIBLE. I wear a bright red ear mold on the hearing aid in my “deaf” ear. I wear sparkly “bling” on the cochlear implant on my “hearing again” ear. I go about my life accompanied by a hearing assistance/balance assist dog 24/7. I learned long ago that it was in my best interests to make an invisible disability – VISIBLE. It kept me from being knocked out of the way, and helped people realize that something about me is different. I can still work, shop, go to movies, hike, and dance… yeah. OK, maybe not that last part…

I just don’t hear well… especially in big, cavernous places, or busy, buzzing atmospheres. Once you get my attention and I know you are talking to me, I can actually hear you great! I may have to ask for a very occasional repeat, but for the most part I do really well. I’m proud of how far I’ve come in my hearing. Despite all my visible reminders and “kissing sidekick”, Chloe, people who know me well (friends, co-workers, and family members) will forget that I may have trouble if you don’t get my attention first and that I can’t move FAST – ever. Heck… sometimes even *I* forget that I cannot move fast. Nothing reminds me quicker than when I

fall

down

and

go

BOOM!

Through the years I’ve been able to meet some wonderful people. Some examples include:

1) Folks through the training center at Fidos For Freedom.

2) People at Hearing Loss Association of America conventions or conferences

3) “Hearing Again” recipients at Cochlear America conferences

4) Individuals in support groups for tinnitus, Meniere’s disease, hearing loss, and assistance dogs users (both face-to-face and in virtual environments online).

Not every disability can be made visible. Not every person chooses to even try and make something invisible – visible. They have their reasons and it is an individual’s choice how they want to disclose or keep hidden any disabilities they may have. It could influence their work environment, relationships, and even self-esteem. I choose to support ALL individuals who live with chronic illness, invisible illness, or disability. Recognizing these illnesses once a year in a push for national awareness, I hope will eventually dispel erroneous ideas and information about these very populations. This is one of the reasons I “blog”, and invite guest authors to write for “Hearing Elmo” as well. Raising awareness makes a difference… one person at a time.

I read some incredible stories of courage, faith, and perseverance this week at the national website for invisible illnesses. You can check out some of them here. I’m proud to be a part of a community of people who choose to live a victorious life  – “in spite of”.

Take some time this week if you can to recognize the courageous people that you know who live with invisible illness and the choices they have made in order to live life to its fullest!

Denise Portis

© Personal Hearing Loss Journal

Get Their Attention

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I recently attended the annual national convention of the Hearing Loss Association of America because it was actually held in my area this year. At one point, I was in the crowded convention hall perusing the numerous hearing loss vendors and booths. At a distance, I saw an old acquaintance scoot by in their scooter. I tried to wave them down but I was not in their peripheral so they did not see me. After they quickly rolled out of my sight, it hit me! I could have raised my voice and said, “Hey Bob!” This friend did not have a hearing loss, but attended these conventions alongside of his wife who WAS deaf and hearing again with two cochlear implants. I had to smile at my mistake, because I forget that people with normal hearing do not have to have a visual cue in order to get their attention. (Thankfully we ran into each other later…)

I see this all the time in my kids. Kyersten and Chris (now 21 and 20-years-old) attend college but live at home. They really have no memories of my not having a hearing loss. Even though I had a progressive loss, it took twelve years before my hearing was completely gone. They have both told me that they don’t remember my ever hearing well. They are so accustomed to speaking with someone who has a hearing loss, they automatically do things that are more difficult for someone who isn’t in constant contact with someone who is deaf. They always come into the same room that I am in, and rarely try to have a conversation from another room with ANY family member… even those with normal hearing. Recently my son came all the way into the family room to ask my husband a question. It was a simple question that could have easily been asked from the kitchen. The television wasn’t on, and the area was fairly quiet. However, he is so accustomed to facing the person he is talking to, it is difficult to remember that he can do some communicating from another room when it comes to his dad. My daughter is often told that even as shy as she is, she has “uncanny eye contact” when communicating with someone.

Teaching Them Early

When my kids were about 2-3 years old, they were already “old hats” at communicating with a person who had hearing loss. They cannot remember watching television without captions. Even “Barney, the Dinosaur” had captions, as did “Sesame Street” and “Thomas the Tank Engine”. I believe it helped them learn to read as early as they did!

If I needed to tell my kids something, I would walk over to them and get down on their level. I would put my hands on each side of their face and say, “I’ve got my GUESS WHAT FACE ON!” I’d then (almost nose to nose) tell them what I wanted to tell them, or simply say “I love you”.

If they came to talk to me, I could hear that they were talking, but not understand what they were saying. So I’d lean down and put my palms on each side of their face and ask, “Wow! Do you have your GUESS WHAT FACE ON?” It didn’t take long for them to begin putting their own palms on the sides of my face when talking to me.  As they grew older, we dropped putting our hands on the face of the other, but they would come and tell me with direct eye contact…  “Mom, I’ve got my GUESS WHAT FACE ON…” and then tell me what they were going to say.

By the time my kids were 5 and 6-years-old, it had become habit. I was eventually able to afford a refurbished hearing aid that gave me some help in hearing for several years. I recall my daughter (from the next room) telling my son, “Wait a minute. Let me put my GUESS WHAT FACE ON and ask Mom!” As they continued to age and mature, what “stuck” was direct eye contact and face-to-face conversations. It was actually a wonderful gift to help nurture in them, for all of us do very well to give the other person the attention they need and deserve when communicating. No competing with electronic games, closed captioning on television, or computers when we talk. We put everything down and LOOK at the other person.

How to Get a Deaf Person’s Attention

Here are some great tips in how to get the attention of a person with hearing loss.

1. Wave your hand in their line of sight.

2. Touch their shoulder or hand before speaking.

3. Move into their line of sight with your body to gain their attention.

4. Turn the lights off and on (this is especially helpful in a room that may have more than one person with hearing loss and you need EVERY person’s attention).

5. If sitting at a table with the person, gently knock on the top to get their attention through vibrations.

Can you think of any others? I welcome your input!

How Service Dogs Get Attention

Hearing assistance dogs are taught to get their partner’s attention by gently bumping them with their nose or touching them with a paw. As I have a balance disorder, Chloe tries to garner my attention by standing and staring and WAGGING LIKE MAD. She only places a paw on me or bumps me with her nose if her 1st efforts have failed. Smaller assistance dogs, may get their partner’s attention by actually jumping up on them.

Even though hearing assistance dogs are trained how to get the attention of their partner to alert them to sounds, the human partner has to be responsible as well. Shortly after being matched with Chloe my trainer, Pat, took me to many different types of public places to train ME. Chloe was already trained. She drilled into me, two important things:

1. WATCH YOUR DOG

2. TRUST YOUR DOG

I quickly learned to pay attention to what has Chloe’s attention. Her hearing is not only much keener than my own, it is more sensitive than people with normal hearing. I can now even recognize when she hears something if she is standing in front of me (with my only seeing the back of her head). Chloe has a modified “heel”. “Heel” position is when the dog’s shoulders are parallel to their partner’s left leg. However, I do not have peripheral vision on my lower left. So we taught Chloe a modified “heel” that is slightly forward of a true “heel”. I had to learn how to observe the BACK of her head. Thankfully she has these wonderful hound ears that perk up and she “points with her nose” in the direction from which a sound is coming. She will even cock her head to the side to really tune in.

Look the neighbor came out...
Look at that family over there...
something is in the bushes...

If the sound is something she thinks I should hear, she’ll come and get me – phone ringing, door bell, someone calling my name, kitchen timer, etc. These are all trained alerts. However, I have been in situations where I could tell a sound had completely distracted her yet I could not hear or place what it was. When this happens, I ask “Chloe… what is it? Show me!”

Chloe will start to wag and TAKE me to what is making the sound. I have to be careful about this. I don’t want her to take me to every single sound she hears. She may hear the kid’s arguing and cock her head as she listens. I do NOT want her to take me to where they are arguing because they are old enough to work out their own problems! She seems to understand when it is a sound that I need to pay attention to – such as a cat locked in the laundry room, the low-battery sound on the phone in the bottom of my purse, or “Daddy” hollering from the bathroom because there isn’t any toilet paper!

A Word of Caution

I believe that individual’s with hearing loss should get the attention of every person they wish to speak to – even if that person has normal hearing. Do you know how many conversations I have interrupted because I walked up to someone and started talking without hearing that they were talking to someone else? I try to make it a habit (and still sometimes fail) to make sure I have the attention of someone before I begin speaking. This eliminates the likelihood of my talking over someone already talking.

I suspect all of us can improve our communication skills. If you have someone in your life who has a hearing loss, I encourage you to sit them down and ask them in what ways you may better communicate with them. If you have a hearing loss (whether a veteran of deafness or a “rookie” – new to coping with hearing loss), try to sit folks down and have a “heart to heart” about ways they might better communicate with you. This may include family members, co-workers, or even supervisors. Don’t think, however, that once you share with them how to better communicate with you that they will always do “right” from that point forward. I have learned that the people in my life need occasional (positive) reminders.

“Could you put your hand down please? You are covering your mouth”.

“Do you mind looking my direction when you speak?”

“Could you get my attention before you begin speaking? I’m afraid I missed all that you said prior to my looking up and seeing you standing there!”

Stay positive. Few people will put any genuine effort into communicating with you if you belly-ache and whine about it. If you get angry, it may cause resentment and defensiveness. Keep your cool! Smile… be positive! In the end, you are actually helping them better communicate with ALL!

Denise Portis

© 2011 Personal Hearing Loss Journal

“Family”

Published on by hearingelmo3 Comments

Approximately 1 in every 8 Americans experience some degree of hearing loss (Binder, 2011). This is approximately 36 million people – just in the United States. While to some, this number may seem overwhelming or unfortunate. For me? I have to admit to a small “thrill” – for you see… I’m a part of this “family”. I am one of those “1 in 8”.

What is “family”? The obvious definition includes those to whom you are related. I’m very grateful for my immediate family, for in many ways they fall into the “family” of which I am writing today as well. For the purpose of this post, “family” consists of individuals who understand by direct or indirect experience, a life that may be different as the result of disability – whether it be congenital or adventitious.

Hearing Loss Association of America

I recently had a couple of wonderful weekends that helped solidify this feeling of “family” for me. The first was when I went to one day of the 4 day national convention for the Hearing Loss Association of America. This year it was in my area, so I could not pass up trying to go at least one day. I was able to attend a number of workshops, all of which had CART. The rooms had terrific amplification, so I was able to hear the speakers of each workshop very well thanks to my cochlear implant. However, there were a number of people in each workshop who used the CART. On a large screen next to the speaker, every word spoken was also typed by a trained captionist. Those who had never experienced CART before, and therefore had never experienced workshops such as these that were truly accessible, hung on every typed word! As I looked around, nearly every ear had a hearing aid or cochlear implant – sometimes BOTH. I counted six hearing assistance dogs in attendance at the convention on Saturday. I was surrounded by “family”. Even those without hearing loss knew someone who did, were family members, or professionals that worked with our population. Between workshops old friends and new friends often crowded around talking. I couldn’t get over feeling like I knew these people. There were no snide comments or competition over who had the better cochlear implant or hearing aid. We were all “family” – with an intimate knowledge of what it means to live with hearing loss.

I attend a local chapter of HLAA, but being at a national event has no equal. The Internet has allowed people with similar disabilities to contact, share information, and get to know each other in a supportive environment. Some of the people I met I had only known online. However, these national conventions allow us to meet face-to-face! What a treat to literally hug the neck of some of my “family”!

This past weekend, I was able to hang out with a wonderful friend who has bilateral Nucleus Freedoms. She lives in North Carolina and since my husband and I were going down to visit his mom and dad, I took the opportunity to spend the morning with her. She took me to one of her favorite places – the North Carolina Zoo. I hadn’t seen the zoo in at least nine years – not since I had moved away from the area in 2002. We have so much in common in addition to hearing loss. No – we do not have similar backgrounds or childhood experiences. But we both are advocates and do all we can in our own small realm of influence to make a DIFFERENCE. She is a sensitive soul who sees much more than a normal set of eyes can see. It shows up in her photography and in the simple things she points out. A whispered, “L o o k“, usually yields a treat of catching LIFE in an unexpected way. I consider her “family” although we are not related.

Fidos For Freedom, Inc.

At Fidos For Freedom, clients include those with mobility issues caused by numerous types of disability or illness, and people with hearing loss. I cannot count the number of different types of disease, invisible illness, and disabilities present in our “family” at Fidos. The fact we are there for the same reason makes us “family”. Whether client, trainer, puppy raiser, volunteer, or DOG… we find a bond and sense of “family” that cannot be found in other groups in our lives.

I am thrilled to share information and get to know people all across the U.S. who are partnered with assistance dogs. Our disability or invisible illness may be different… but we are the same. Some have partners from organizations like Fidos and some are owner-trained teams. Regardless, we are “family” and I feel a loyalty towards these teams that defines the kind of “family” we are.

Sometimes FAMILY are not “Family”

My readers share with me sometimes that trying to get family to understand what it is like to live life in “their shoes” is quite difficult. For those who acquired disability or invisible illness later in life it may make more sense that family members such as parents and siblings seem incapable of grasping who you are now. However, there are others who have shared that even though their own challenges began at birth, family members are unable to fully understand (or perhaps cope?) what it is like to experience life with additional challenges. I truly believe that people with disability and invisible illness are more capable than those who are “normal”. Learning to adapt, and seeking support, information, and techniques create a malleable, strong individual. Oh sure! There are times we flounder. Change is never easy. But the end result yields a person who is extremely ABLE – not disabled. It is unfortunate that many people to whom we are related are unable to really connect with us once change takes place. Perhaps our peers often become “family” to us because they help us stay connected to life in a more positive way. They understand. Relatives often lose contact with us or only see us once in a great while. These individuals who offer daily support, information, and “family” literally evolve into a close knit community and family. I have had some readers share that they are closer to those in their peer group (disability group) than they are to siblings, parents, and other relatives. They have shared that not only do these “real” family members not understand – they don’t want to understand. I was recently reminded that my own siblings do not really know who I am anymore. After something rather tragic occurred in a relationship I find now broken, I wailed to my mother on the phone how terrible it all was. I shared some things with her that I had never shared before… and she responded, “You never shared these things with me when you were going through this”. So I am (painfully) aware that sometimes our family members are unaware and out of touch because we withdraw.

I am blessed to have family who are also “family”. My immediate family have been a safe haven of support throughout all of my adult life. My children have never known me without hearing loss. Mom’s favorite word growing up has always been “huh?” My husband held my hand both literally and figuratively throughout the process of losing my hearing over 12 years. When I became profoundly deaf, he was my biggest cheerleader in seeking other technology that would help me hear again. My family willingly sacrificed so that I could attend trainings and eventually receive an assistance dog so that I could be more independent. My immediate family members advocate for those who have any type of special challenge. They have participated in TBI (traumatic brain injury) camps, hearing loss conventions, local HLAA chapters, Walks for Hearing, cancer awareness walks, and much more. They know and realize that  disability or invisible illness does not define the person. They have always seen the PERSON first. Because they understand what it means to live with disability or invisible illness simply because they LOVE someone who does have challenges, they are “family” as well as family. I hope that many of you have family members that are also “family”. People who support you without hindering you. People who cheer you on and look forward to your eventual success.

Look for – and BE – “Family”

If you are currently adjusting to acquired disability or invisible illness – please know you are not alone. Find a computer and Internet access. It won’t take you long to discover you are not walking this road alone. As you reach out, look for ways to connect and be “family”. I promise you that there is no other feeling like finally… belonging.

Binder, M. (2011). Hearing. The Ear Man: Hearing Aid Service. Retrieved June 28, 2011, from http://www.theearman.com/hearing.html

Denise Portis

© 2011 Personal Hearing Loss Journal

 

Sex and Hearing Loss

Published on by hearingelmo3 Comments

When preparing to write this post, I went back and forth about providing “hard and fast” FACTS about gender differences in hearing loss and writing about personal observations. Because I can easily provide links to documents, research and scholarly articles about the topic, I decided to write about personal observations. Before I do that, let me provide those links!

A wonderful article about gender and race differences can be accessed HERE.

How hormones can have a part in the way hearing loss manifests in individuals can be read about HERE.

An article about why men are more likely to experience hearing loss can be accessed HERE.

An article by ASHA and Cochlear Americas can be accessed HERE.

Personal Observations

I realize that personal observations are somewhat limited by the experiences of the individual themselves. However, as I have had the opportunity to be a part of a number of hearing loss organizations, and have had the privilege of speaking to groups of my peers and professionals across the United States, I have a lot of faith in my own personal observations about gender differences. Sometimes new information was gleaned as the result of attending workshops, conferences and meetings; listening to experts on hearing loss discuss gender differences was very informative. However, I also happen to be a terrific “listener” in spite of my own profound hearing loss. Corresponding with people from across the United States that I may have met in my travels, or are frequently visiting “Hearing Elmo”, I have drawn some conclusions about how hearing loss affects the different sexes. Please allow me to share my observations with you!

Men with Hearing Loss

1. Men are more apt to be pushed into getting help. Perhaps men stay in a stage of denial longer than women do, but men are usually encouraged to do something about their hearing loss as opposed to taking the initiative to doing it themselves. I don’t think it is because they are unable to make decisions about their hearing health; rather, men are more likely to “fake” their way through life pretending they don’t really have a hearing problem. This does not mean that women do not “fake it”, nor does it mean that women are not ever pestered to visit an audiologist. I just believe that men are more likely to be badgered into going to a hearing health professional than women are.

2. Men do not usually seek support from peers until hearing loss has reached a critical point. I believe that men are more likely to “go on about their life” and “making do” after getting that first hearing aid than women are. If assistive technology allows a man to continue working, interacting, and living life, they will be unlikely to join support groups or advocacy groups compared to women with hearing loss. If hearing loss is progressive, men will also begin to seek out information, support, and peers once hearing loss interferes with communication and relationships. On the positive side, men with a stable, mild to moderate level of hearing loss are more likely to not let hearing loss define who they are. Hearing aids and assistive devices are merely tools. I think men may equate support groups with “talking about your feelings”, and as a result miss opportunities such as learning more about advances in technology, discovering legislation that may have an effect on hearing loss populations, and learning valuable communication strategies.

3. At the severe to profound level, men are more likely to shut people out. I can’t tell you the number of times men have told me that they alienated everyone that cared about them when their hearing loss really began to affect their lives. Perhaps it is a coping mechanism? One man wrote to me and shared, “I filed for divorce from my wife of 11 years. I felt in a panic to do it before she filed for divorce from me because I wasn’t the man she married”. One man came up to me after a workshop and said, “It’s easier to be be cranky and belligerent than to discuss with my family how my hearing loss makes me feel”. Still another shared, “I’d rather be accused of being distant than to talk about my hearing loss with her”.

4. Men are less likely to use hearing assistance dogs. Of all the people I know who chose to be partnered with a hearing assistance dog… most are women. Yes – there are some men… but my experience is that they are the minority. I believe if you are partnered with a hearing assistance dog, you have shouldered the responsibility of knowing that by doing so you will be making a potentially invisible disability very visible. Perhaps men are less likely to place their safety and trust in a canine partner? That doesn’t mean they are less likely to like dogs. (On the contrary, I am asked by more men to pet Chloe or field questions about what she does for me). The budding psychology student in me believes that men are more likely to strive to be independent of help from any avenue compared to women. What I find ironic, is that my own hearing assistance dog actually PROVIDES independence to me rather than a new dependent relationship. I think men and women simply view this very visible “assistance” in different ways.

Men in the Supportive Role

I believe men are supportive of those they care about that may have hearing loss. Many husbands attend HLAA, ALDA or AGBell meetings, conferences and conventions in support of someone they care about. However, I have heard women make complaints such as:

“He gets so frustrated that I’m still so SAD about my hearing loss!”

“He is supportive of MY problem, but does not acknowledge it is OUR problem.”

“He doesn’t mind making phone calls for me, but I can tell it frustrates him sometimes”

Women usually welcome a “helping hand” with something as intensely personal as hearing loss. They normally welcome a shared role in learning to live with the acquired disability.

Women with Hearing Loss

1. Women are more likely to “grieve” hearing loss. I think both males and females go through stages of grief when they experience hearing loss. However, I think women tend to get bogged down in depression and experiencing feelings of grief than men do. Perhaps it is because women are usually living more with their “feeler” than men do? I just know that I have heard countless testimonies of women who experienced real grief about their hearing loss. Maybe women are more likely to admit they feel sad about their hearing loss in comparison to men.

2. Women seem to need peer support groups even early in hearing loss. Not all hearing loss is progressive. However, I have been a part of a number of hearing loss support groups and traveled to visit groups across the country. Many hearing loss support groups have women who attend that have a moderate to severe hearing loss. Most of the time, the men I meet who attend these groups have a more significant loss. I think women rely on communication more than men do as a part of what holds their relationships together. When women see a threat to their relationships, they are spurred to action to seek out assistance from their peers. Women tend to flood the workshops on communication tips and will be the attendees who are taking copious notes.

3. Women tend to care about how their hearing loss affects others more than men do. Yikes. I may get “grief” for this one. Fellas? Before you send a barrage of emails to my INBOX, please note that I am not saying men do not care about how hearing loss affects the “others” in their lives. It has been my experience that women seem to be more concerned about how their hearing loss affects others… to a fault. Women can actually become bogged down in worrying about how their hearing loss is changing the lives of those around them. They may worry more about being a burden and how others “feel about them now”. A positive reaction, however, is that women are more likely to actively discover how the “others” in their lives are doing, and in the process adopt or modify communication strategies.

Women in the Supportive Role

I think communication is so important to women, that they may become NAGS to the men in their lives who have hearing loss. It is important to learn “HOW” to encourage the male in your life to seek help. Women may resort to desperate and negative measures if they see that communication has been influenced by hearing loss.

Men may attend support groups with their significant other with hearing loss as an ongoing part of their “protective/provider” role. When the male is the one with hearing loss, however, women should understand that the men in their lives may not necessarily welcome a partnership view of hearing loss. Men (especially at first) may prefer attending support groups alone so that they may continue in what they view as being independent in their role. Women should carefully choose how to discuss that support groups provide them with important information and tools as well as peer support from others who love someone with hearing loss.

As always, I welcome your input and own experiences as they relate to sex and hearing loss!

Now… for all those that saw the title of this post and thought I was going to write about something much different? You have an assignment:

Denise Portis

© 2010 Personal Hearing Loss Journal