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Washington State News for Hard of Hearing People

The official newsletter for Puget Sound District Umbrella of Self Help for Hard of Hearing People (SHHH)

Volume 6, Issue 3
Spring 1999

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SHHH and You

Each year more and more of our readers experience the thrill of attending a National SHHH convention. The average person who attends, worries they will not know anyone or understand anything. You probably avoid meetings because you have difficulty understanding in background noise.

But if you talk to people after attending their first convention, you will hear how much it is like seeing long lost friends. Everyone there understood their hearing loss and it was probably the most relaxing and enjoyable activity they could possibly experience.

There are speakers on many subjects, and an exhibit area full of devices that can make your life so much more relaxing and rewarding. The exhibit area alone is well worth the registration cost.

The 1999 convention is only a few months away. It will be held in New Orleans, Sunday, June 27th through Wednesday, June 30th. Details of the convention will be in the March/April Journal HEARING LOSS.

 

If you are not a member of National SHHH, now is the time to join. Dues are $25 per person, $30 for two people living at same address, or $35 for families.

Make checks payable to SHHH National and send to:

SHHH Membership Desk

7910 Woodmont Ave #1200

Bethesda, MD 20814

If you prefer, you can send your national membership to the Umbrella (see address on page 8) and we will forward it to National for you. You will be glad you did. Join National SHHH Today. You will be glad you did!!!!!!

Ears, Hearing, and Beyond

Third Annual Citizen's Conference, March 6

By Linda Howarth, Virginia Merrill Bloedel Center

 

The annual one-day Ears, Hearing, & Beyond conference will be held on Saturday, March 6, 1999, beginning at 9:00 am. The doors will open at 8:15.

The conference will be at the HUB Auditorium on the University of Washington campus. Signs will be posted to help with parking and locating the auditorium. A map will be in the brochure. [Editor's note: Everyone receiving this newsletter in the mail will receive a brochure shortly afterward directly from the U of W. If you received this newsletter other than by mail, you will not receive the brochure with the map unless you request it. Call 206-616-4105 or e-mail: Bloedel@u.washington.edu requesting the brochure and they will send it to you.]

The conference is FREE and open to anyone interested in learning more about the ear, hearing aids, assistive listening devices (ALDs), cochlear implants, etc.

This is a broad ranging program that will appeal to people of all levels of understanding and need. Come and go as you wish. Real-Time Captioning will be in place and ALDs available. The exhibit room will be open all day with approximately 20 exhibitors, including hearing aid, cochlear implant, and ALD manufacturers.

The day will begin with talks on hearing aids, including implantable aids. ALDs and cochlear implants will then be presented as they relate to adults and children. Also planned is a workshop on assistive devices in the afternoon so that people can get hands-on experience.

This FREE event is co-sponsored by The Lions Club District 19B Hearing Conservation Foundation. It is endorsed by SHHH, AARP, and the PNW Cochlear Implant Club.

[Editor's Note: We urge all of our SHHH friends to attend. We think you will enjoy it. If there is a subject you are not interested in, you can spend the time in the exhibit area. They are expecting an increase in the number of exhibitors. Since there will be hearing aid manufactures in the exhibit area, you might want to bring your audiogram, in case you have a question about hearing aids.

Are you concerned that you will not understand? The meeting will have assistive devices available for attendees as well as Real-time captioning. What this means is that every word spoken at the meeting will be printed on a large overhead screen. If you have problems understanding in large groups and have never used an assistive device, we urge you to give one a try. Tell the person issuing them that you have never used one before and he/she will show you.

You say you never go out in large crowds because you cannot understand with all the background noise? At this meeting there will probably be 400 others just like you who know what it is like not to understand with background noise. Come watch them as they communicate with each other. You will be amazed at how understanding everyone is.

Do you have a friend or family member who no longer understands, even with the benefit of assistive devices? Do you know of parents who have a child with a profound hearing loss? Urge them to come and learn about cochlear implants. Please come and bring your neighbors and friends.]

HSDC 5th Annual

Health Fair, April 24th

by Chris Borders, Audiologist HSDC

 

The Hearing Speech and Deafness Center (HSDC), 18th and Madison, Seattle, invites SHHH members to our 5th Annual Hearing Health Fair, Saturday April 24, 1999 9:00 AM to 3:00 PM.

Drawing for a free hearing aid and other items

Newest hearing aid technology

Educational seminars

Hearing screenings

Hearing aid cleaning

Assistive listening and signaling devices...much, much, more!

Everything is free! Come to learn and have fun doing it!

COPING SKILLS

By Penny Allen

Assistant SHHH Coordinator WA State

 

My mother had a unique way of coping with life. When things got to be too much for her, she did jigsaw puzzles, and then she went off to Never-Never Land. I could always tell how her day was going by the number of puzzle pieces left on the table. As she grew older, she spent more time doing puzzles and less time interacting with people. After she passed away, I cleaned out her apartment--her closets were filled from top to bottom with jigsaw puzzles. No, she didn't have a hearing loss. She just never looked outside her window.

We all have different ways of contending with life's misfortunes. My way was to constantly rearrange my reef aquarium and clean the algae off the glass. Or else read book after book-usually some inane babble about somebody else's problems. It was easier than having to face all the frustrations that accompanied my hearing loss-- for awhile anyway. But I found that I was becoming fearful of trying new things, meeting new people, and going to new places because of my introspection. I was also angry all the time. Most of all, I blamed my husband for not understanding what I was going through.

It wasn't until I was in an SHHH meeting one day that I found out just how much my hearing loss affected my husband and children. He stood up and told everyone what my hearing loss had done to our marriage (and that's one of the reasons I strongly encourage spouses to attend SHHH meetings). I had spent so much time worrying about what other people were thinking, and plotting to get even for perceived injustices, that I hadn't thought anyone was affected but me!

You don't get coping skills from reading a book. To learn them, you have to practice doing them (kind of like learning to quilt by hand). It starts a little bit at a time. The hardest thing is the words: "I am hard of hearing." Why is that so difficult to say? Will the sky fall in if you say it? Difficult words at first, but oh, so important!

You have to believe me when I tell you the other guy is not out to get you-he's just ignorant about hearing loss. That's not a sin. After you tell the other person that you're hard of hearing, you don't leave the rest up to his imagination. His initial reaction will be to start shouting or to ask you if you know sign language (which is silly, of course, because he probably doesn't know it either). All you need to say is that you understand fine if you can see his face-oh, and if he takes his hand away from his mouth, that would be helpful too. It's up to you to see that this is a successful conversation. But you'll need to do it in a nice way (that means don't grit your teeth). I have found that people genuinely want to be helpful.

When you go out to a restaurant, check out the seating. Try to get a booth if possible, or find seating in a corner and away from the kitchen. Don't let them seat you near a bunch of kids. Check the lighting. You can't read a person's lips if his back is to the light. If you're in a large group, try to get a round table. You don't want to get stuck at the end of a long table where you can't hear. If the music is loud, ask the waiter to have it turned down. He'll look at you like you're crazy, but so what? Just tap your hearing aid and say that you have trouble understanding conversation.

Assistive listening devices have helped me immensely (besides restaurants) and allow me to take part in group activities and interact with normal hearing people. I try to carry my FM system with me all the time. Even if I think I can get by, I use one, because it makes voices so much clearer and I'm not so worn out trying to understand. It takes guts, though, to walk up to a speaker with your little lapel mic and ask him to wear it. It would be so much simpler to sit there quietly and not understand, wouldn't it? Wrong. You'll only set yourself up for anger and frustration (we're trying to avoid that stuff). The goal is to hear, not be a martyr. Many times I've encountered speakers who tell me that they don't need to wear another microphone (or any microphone)-they'll just talk louder. No, no, no, no. That won't work, and you must tell them so.

What I've discovered about using good coping skills is that I am a more assertive person than I used to be. That makes me feel pretty good about myself. I am no longer uncomfortable around strangers nor quick to take offense because someone doesn't understand my hearing loss. People respect me for taking charge of my communication needs. And that's what it's all about for me, by the way-people. I'll be darn if I'm going to escape into jigsaw puzzles.

Communication

Strategies/Speech-reading Classes Offered at HSDC

By Chris Borders, HSDC

 

Hearing, Speech & Deafness Center will once again be offering their eight week workshop designed for the hard of hearing person, his/her family and friends. February 9th through March 30th, Space is limited. For more information call 206-323-5770.

 

911 Emergency Phone Calls

By Gordon Nystedt

About three years ago several Washington State SHHH groups/chapters invited their local 911 providers to explain the system and answer questions. I attended most of those meetings and found them very informative.

At that time there were a few complaints about not answering the TTY. But since most SHHH members use a voice phone, their complaints related to voce calls. Some I heard were:

  • Operators talked too fast and did not slow down, even after being asked to do so.

  • When a call was made from a pay phone without amplification, and when asked to speak a little louder, the operators often shouted instead of switching to a phone that amplified his/her voice back to the caller.

  • The operator's accent made it very difficult for the hard of hearing person to understand.

Have you placed a 911 call in the last three years? If so, did you have any difficulty? If the answer is "yes," we would like to hear from you. We would like to know:

  • What type of phone you were using? (TTY, VCO, amplified phone, pay phone, cellular phone, etc.)

  • What kind of problem did you encounter?

Please send an e-mail or regular letter to the SHHH Umbrella. (Information on page 8). Or if you plan to attend the meeting at the U of W, please stop by the SHHH booth and pick up a 911 questionnaire.

Would you like to have a meeting in your area on 911 ? If so please let us know, and we will advise the WA State 911 training center for deaf and hard of hearing. The survey you fill out will be given to the WA State 911 Training center. They will advise you when a meeting is set-up in your area.

My Angel Face

By Dave Pearson, Marysville

Kathy, Tasha and I are blessed with twins, Lucas Darrian and Danissa Kay. Almost 4 months old now, Luc is husky & about 16 pounds and Dani is petite and about 12 pounds. They love to smile and laugh, to study your face.

We had the "Universal Newborn Hearing Screening" (infants hearing test) on both of them. Mike Mallahan, an audiologist from the Hearing and Balance Lab at Providence Health Care, tested our kids. When he put the instrument in Luc's ear and pushed some buttons on the computer, we saw one wave of color on the screen. He sent some sound to Luc's brain and the sound came back on the computer in a different color. It took less than a minute in each ear. He did both of Luc's ears and Luc had no problem hearing. When he tested Dani, she didn't do so well. Mike thought that she might be congested and said he would try again later. A month later he gave the test again. Nothing came back to the computer. He then did the next test (BAER test) that took over an hour to do. He found that our Angel Face (my nickname for Dani) had some hearing loss in both ears. Later we had a conference with Mike; he had talked with his colleagues from Children's Hospital. He found that in the high frequency range, Angel Face had a mild hearing loss in both ears. Our little Angel Face will probably need hearing aids. We made an appointment at Children's Hospital for more testing in December.

At that moment, tears welled, asking why Dani... Why our little Angel Face... I prayed to God and asked him to let her have normal hearing. I didn't want her to go through what I went through growing up.

I was born HOH (hard of hearing), I didn't get my first hearing aid until I was in the second grade. I had the kind that was bulky and I carried it in my shirt pocket with the wire behind my neck up into my ear. When I heard that Dani needed hearing aids, everything that happened to me growing up flooded through my mind. Being slapped on my hand with a ruler by my first grade teacher who I adored, because I wasn't paying attention (I didn't hear). Being laughed at by my peers because I was a little different and talked funny. Having my hair pulled by my third grade teacher because I was disrupting the class and I didn't even know I was doing it (I didn't hear her talking). I was too ashamed to tell my folks because I thought it was my entire fault. English language was the worst subject for me. I was taught to read by the sound of a word. I don't hear the endings of words. I don't hear the "ed", or the plurals at the end of words. A lot of letters sound the same to me. When English was being taught, I didn't understand what it all meant... what I heard and what the English book said ... It didn't come up as 2+2=4 to me. It didn't make any sense to me at all. My 8th grade English teacher had us write a paper on a certain subject. I wrote my article and later, he used my paper as an example to find all the English errors because I made the most errors. He photo copied my paper and handed it out to everyone. When I saw it I just about died. Everyone was looking at my paper. All I could do was sit there, stunned, for the longest hour of my life. This one time, I told my folks about it. They looked at the paper and were very angry with me for having so many errors in my writing. I felt ashamed, stupid. They called the school and they talked to the teacher. The next day, in his class, the teacher again humiliate me and told the whole class that "Mommy's boy here cried to his mommy." I was too ashamed to tell my folks about this. I don't even remember if I ever went back to that English class. I've blocked it out of my mind. In fact, I've blocked out most of my school years from my mind. Through the years, teachers just gave me passing grades to pass me on to the next level of school. By the time I was a junior in High School, I was so much

in my shell, I didn't have a single friend. All my life, I've felt so alone, I didn't know a soul that wore hearing aids. I had no one to relate to about my hearing loss. In my senior year, I somewhat broke out of my shell, and proved to myself and everyone else that I could do it. I wasn't the "retard" that people thought I was (I was called this by my peers). That year, I made the honor roll. I had straight A's in all the subjects but one... English. I continued on to college and had to make up a lot of courses from high school, but did so and enjoyed school and enjoyed reading from that time on.

I know that things will be different for Dani. She will have two well educated parents who love her and understand about hearing loss. She will be wearing hearing aids at 6 to 8 months old instead of 7 years old like I did. She will have speech therapy early in life if she needs it, not wait until the fourth grade. Teachers are and will be more educated about hearing loss because I will be there to let them know what she needs. She will have other people and peers to relate to and she will have the help of SHHH. She will have a lot more advantages than I did, so hopefully she won't need to go through what I did. She will never have to feel "ashamed" to come to us.

Just think, Danissa will be the youngest member of our group. Isn't technology today amazing!

[Editor's note: Reprinted from Everett Area Chapter newsletter, November, 1998]

HSDC Has a 888

Phone Number

By Steve Hillson, HSDC

HSDC (Hearing, Speech, and Deafness Center) has added a 888 phone number. It is 1-888-328-2974 voice or TTY. It is a national toll free number which will allow SHHH people from all over the nation to contact us about assistive devices. If you have any questions, give us a call.

 

Childhood Based Fears

By Emily Mandelbaum, Port Townsend

Two articles in the Winter issue touched on a very familiar problem for us HOH people, one that has hounded me ever since I purchased my first set of hearing aids nearly 30 years ago. It is our unwillingness (uneasiness, resistance, discomfort) to take advantage of the devices and communications assistance available to us.

In his "Coordinator's Comments" Gordon mentioned unused assistive devices at a hotel. Penny Allen ("Being Fearless") wrote about "wallowing for ten desperate years" before taking advantage of technology and coping strategies that restored her ability to function in the hearing world.

Penny mentioned the fear so familiar to all of us. For me there have been 3 kinds of fears, all probably the result of my upbringing. The first is loss of self sufficiency, having to ask for help, not being able to do something on my own. The other day I shocked myself by refusing to ask a phone caller to slow down and repeat when I did not understand. What's the matter with me?? I have been through 4 sets of hearing aids, 4 classes in coping strategies, 2 SHHH conventions, 1 cochlear implant, years of SHHH meetings.

Like most children I was encouraged, rewarded for "taking care of myself", important training for adult independence. But the side effect was difficulty admitting when I needed help. Doing so threatened my self image as a competent person. My implant restored much of my independence but along with it, all too often, the cherished illusion of normal hearing.

The second childhood-based fear is that of being different from the group, being weird - the only one at a concert wired to an infrared or FM receiver, the only one to carry a hand-held microphone at a party, the only one to make an unusual request at a hotel where I want to be a "normal" guest. How often in my youth (and my adulthood!) did I strive to be like everyone else, not call attention to myself, not ask for special help, pass up the odd assistive device available at the theater?

The third is fear is that I will not understand the technology, will fail to adjust it properly, be tangled in a mass of wires, need to complain to the provider that it doesn't work for me, make public my stupidity and awkwardness with such devices.

Fear of new technology is justified. Technological change is rapid and seems endless. For example, moving into our new home was like switching from a 40's to a 90's model car. The level of technology just meets the building code but it has been frustrating and confusing - earthquake engineering, heat loss analyses to comply with the latest energy efficiency requirements, digital thermostats and appliances, air exchange systems, safety systems for items I never considered a threat. According to new construction standards, the 50's Seattle house we happily occupied for 30 years was a disaster waiting to happen.

Doing nothing, not "rocking the boat" becomes all too tempting. Opting for what seems easiest but not solving the problem, is a favorite theme of Dr. Sam Trychin, a psychologist who focuses on hard-of-hearing people.

Because of my fears and laziness I nearly passed up the chance to use an implant-compatible cellular phone. Ugh, I had to read another manual. It was not like my normal phone. It doesn't work everywhere. It has too many buttons. It's one more thing to carry around, another battery to recharge, another set of wires to untangle. But now that I'm over the hurdles, what a joy to feel safer when I drive, not to struggle with payphones in noisy areas, not to have friends and family worry when I am late.

It's hard to overcome fears, resistance to change, common human laziness. All I can suggest is the following. Crank up your spirit of adventure. Don't expect to like every piece of technology you meet. Give yourself permission to fumble. Expect breakdowns. Keep your sense of humor. Remind yourself that others will admire your use of assistive devices. Ask for help. Don't quit! Then enjoy the thrill of improved communication when it finally happens.

Digital Cellular Phones

By Wm. Mulligan, Seattle

I was very interested in the thorough and informative article on the digital cell phone problem in your fall edition, as I had recently encountered the same problems.

I have used analog cell phones for years without problems, but switched to a digital phone because of the promise of better reception and clearer transmissions. The first digital phone I tried was an Ericsson, and was completely useless because of a loud buzzing sound when near my hearing aid. I exchanged this for a Motorola phone, which had the same problem. Neither the dealer nor my hearing aid dispenser had heard, nor could explain, the problem.

However, I found, by accident and experimentation, two ways to partially solve this difficulty, neither of which was mentioned in your article. The best way is to use an auxiliary antenna, which can be purchased for a few dollars. Separating the antenna from the phone completely solves the problem, but is a bit awkward in certain situations.

The second method, on my Motorola phone, is to punch in F (function) 2, on the keyboard, which reverts the phone to analog service. This works just fine, but of course, defeats the original purpose of going digital, e.g. clearer reception and lower fees, and must be done each time a call is received or made. The alternative is to program the phone for strictly analog service, but I prefer not to do this as others use my phone, and can take advantage of the digital service.

I hope these suggestions might be helpful to your readers. We certainly need to put pressure on the manufacturers, perhaps using the ADA, and to try to inform dealers as well as dispensers of this problem.

Caption TV

By Bernie Swartz, Seattle

[Editor's note: Following is a copy of a letter he sent to KOMO-TV.]

At the time of the bus accident on 11/27/98 afternoon, KOMO, KING and KIRO immediately had "Breaking news" of this tragic accident. But KING and KIRO waited until their regular 5 p.m. news to use CC, while KOMO 4 went almost immediately to CC at the time the accident took place. I checked KIRO and KING and only audio was used by them as is usual for breaking news.

I just wanted to let you know that we, the hearing impaired, must show our appreciation when our needs are taken into consideration in events like this tragic one.

Gordon L Nystedt

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