A Hearing Loss & Late Deafened Blog

Posts Tagged ‘Hearing aids’

The Perseverance of Sound: Part I

In Deaf-Blind, Deafness, Hearing Loss, Musicians with Hearing Loss on February 21, 2017 at 3:59 pm

SayWhatClub (SWC) is pleased to welcome guest writer and SWCer Justin Krampert who shares his story of hearing loss, how it has affected his music, and what it has taught—and continues to teach—him. 

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By Justin Krampert

“Music is about communication… 

it isn’t just something that maybe physically sounds good or orally sounds interesting;
it’s something far, far deeper than that.”
~ Evelyn Glennie

Emerging into the world at eight weeks premature, 2lbs. 2oz, my miniscule body could literally fit in the palm of your hand. I was supposed to be born on Halloween (of all the nifty days!), but I was a Leo instead of a Libra. The universe obviously had a much different scheme in mind for me. Not escaping unscathed, my sight was permanently affected by Retinopathy of Prematurity (ROP). I had a Patent Ductus Arteriosus (PDA) surgery to repair a hole in my heart, which left me with a long, gnarly, Frankenstein-esque scar up my torso’s left side. And lastly, the very small bump atop my skull reminds me of the life-saving yet ototoxic drugs that were administered.

One of my earliest hearing loss memories was at 2 years old, climbing the re stairs at hospital, and then having a small room of intimidating doctors put a strange cap with wires and contraptions on my head. But, it was painless and over before I knew it. I was already wearing glasses, when at five (or was it 4?) years old, I received my first hearing aid…a Siemens BTE for my left ear (which had a mild-severe ski-slope, high-frequency hearing loss), and my right ear, which only had a mild loss, did not get a hearing aid. I remember the audiologist being a nice lady who sat me in the tiny booth with headphones, listening for the beeps and words. The day when she put the hearing aid on me, she fiddled with the volume and tone controls, saying, “BAH, BAH, BAH!” into the microphone as she set levels. My mum secured the apparatus to my glasses with a piece of yarn, every day. Thus began the foray into semi-bionic living. With my new, “ear”, elementary school included speech therapy to help me pronounce my ‘s’ and ‘sh’ sounds, and ‘m’ and ‘n,’ which sounded exactly the same.

At nine years old, we began learning instruments in music class. The music teacher, however, was not much of a empathic person, and once, when I tried to advocate for myself by asking if I could move closer to see and hear better, she scornfully sighed, saying, “Oh, Justin, relax!” Up unto this point, apparently, I had been a carefree, little self-advocate, politely asking people to please face me when talking so I could see their faces. I withdrew from speaking up for myself for many years to come. I did not ask for closed captions, so I know I always missed parts in shows and movies. It was the first time where I began to form a philosophy in life: I realized that we should want to help people (and their accommodation requests) when we can, doing so genuinely. I also began feeling ashamed of my noticeably different ability status and wanted to hide my hearing loss. My first formal music experiences were disheartening ones, unfortunately, and even my parents decided for me that if I wanted to try guitar lessons at a young age, that my hearing loss would impede learning or enjoyment.

So, I went through elementary and then middle school, not wanting to play anything remotely music-related. I did however, begin to find music that I could enjoy, close my eyes to, and felt completely free to allow myself the catharsis of my imagination whilst listening. I had my own little cassette Walkman, and would put the volume up on the old foam headphones so I could hear it. My eclectic tastes in middle school ranged from the first Enigma album, to Metallica, Nine Inch Nails, to even some rap. Respectively, I enjoyed the ethereal textures, the distorted guitars and winding riffs, the visceral tones, and the piano parts and drumbeats. I always had difficulty with understanding lyrics, so the instrumental part of the music was and is still, the first thing that catches my attention.

Middle school years are described by most as being pretty rocky, and my obviously thick glasses and ugly hearing aid made me a target of continuous ridicule. Back in 3rd grade, I got a Siemens ITE hearing aid, as my parents felt it would be less noticeable, but with my very short hair, it just stuck out even more. My hearing took a noticeable drop, but I denied and tried to fake hearing better. In 7th grade, I made the choice to secretly stop wearing it, as it would squeal and I would be totally unaware of its high-pitched feedback. My only indication of it malfunctioning was classmates looking at me, pointing and laughing. Luckily, I had Dawn, a fellow classmate, to gently tap me on the shoulder and point to her ear discreetly, so that I could fidget with it, while she chided others for their immaturity.

Interestingly enough, despite trying desperately to hide my hearing loss during my middle school years, I found an ASL class that met weekly, which I attended for a few years until it disbanded. I enjoyed it immensely, and even earned my ASL interpreter badge in Scouts. At the time, I knew I wanted to go into some kind of helping profession when I grew up, but despite even being discouraged (because of my low-vision and hearing difficulties) from becoming an EMT or Paramedic by some family friends, I still wanted to find a way to help others. I was quite inspired to actually go to college at Gallaudet, and become a teacher of the d/Deaf. Then music found a way back into my life as I was going into high school…

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My Experience with CART

In Accommodations for Deaf, ADA, Assistive Listening Devices, CART, Deafness, Hearing aids, Hearing Loss, Partially Deaf, Technology on June 2, 2016 at 1:34 pm

Our guest blogger is SWCer Cristal Alferez. Cristal is a Mechatronics Engineer who works for a Manufacturing Company in San Diego CA. She is Mexican, speaks Spanish fluently and currently is mastering English pronunciation. Cristal loves to read, it is one of her many passions she likes many genres but what she enjoys the most are romantic novels, she also likes traveling by train in the Pacific coast and eating tacos. You can contact Cristal at calferez0911@gmail.com

My Experience with CART, By Cristal Alferez

I always thought I was pretty normal, until I started elementary school. Although I don’t remember very well, my sister told me that at some point in the fifth grade I refused to go school because I couldn’t hear the teacher, since I sat in the back part of the classroom. I’m not too sure why, but I never gave that event much importance. Maybe I didn’t think about it much since during middle school and high school the teachers sat us in alphabetical order and my last name starts with an A, I always sat in the very front.

It wasn’t until college that I really began feeling secluded, my classmates would often tell me that I was unable to hear my name during roll call or when someone called me behind my back, but they would all remind me with a grin on their faces. Although it kinda bothered me that they would be “making fun of me” I would just ignore it and carry on with my day. It was here that I realized that I was becoming more antisocial, compared to when I was in high school. Because of my hearing loss I couldn’t understand some soft spoken people and I couldn’t follow a conversation of more than two people. I would sometimes forget to turn in the homework, not because I didn’t remember but instead because it was assigned verbally and not written on the board.

Sometimes, if I couldn’t hear what the teachers were says I would start to daydream, I would start daydreaming anytime I wasn’t able to understand what someone in a group of people was saying. I also remember crying before having to present my thesis, I was stressing out over the fact that it would be very difficult for me to hear the questions being asked, but luckily I was able to hear the questions just fine and I ended up passing my thesis. It was at that point that I felt ready to confront the problem, but unfortunately I was not able to afford fixing it yet. It’s been five years since I left school, and I thought it would be easy from then on. But it’s quite the contrary, in school you can ignore one of your peers and they would think you are rude, you can forget the homework and you would ended up with a bad grade, but in real life things are different, you just can’t ignore your boss.

I just decided to go back to school again, but with that all of my fears about school came back. I questioned whether it would be a good investment if I was only going to be able to hear about fifty percent of what was being told. So I decided that it was the perfect time for the hearing aids. I have now had hearing aids for five months, I have tried two different brands and I’m getting used to them.  I remember thinking that hearing aids would fix absolutely everything, but I was wrong. Hearing aids help a big deal, but they don’t correct my hearing to “normal” level.

When I went to my class and found out that my hearing wasn’t as good as expected I decided to look for more help, somebody out there must have the same problem as I do, and I found it. I got in contact with the beautiful people of the Say What Club, and I discovered many people who were like me, who understand the struggle I go everyday. They were the ones that helped me find ways to cope better with my hearing loss. I asked and I got the help that I needed. Somebody told me to look for assistive listening devices or FM systems, other ones suggested CART system for the classroom, things that I had no idea that they could exist.

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One day I went the disabled student center of my community college. I actually had very little confidence going in. I was surprised when they lend me right away a FM system that consists in a microphone that the teacher wears and a receiver for me, which I can use with earphones or with my hearing aids. When I saw how positive the response was, I asked if they would allow me to use CART, and I got the thumbs up. I can’t believe it was that easy, I cried of happiness that day. I thought about how many times I missed information in class, and I couldn’t believe that I would not have any problem hearing now. I had mixed emotions.

In the beginning I felt a little bit weird, because everybody would know that I can’t hear. But once that I saw the results and how much it helped me,  I no longer felt embarrassed. So, here is how it worked. The disabled student center contacted this company of captioners who would send somebody to type everything that’s said in the class. Just like subtitles at the movies! Isn’t that amazing? By the time I’m in class I sit wherever I want and have my laptop, iPad or the tablet provided by the captioner. I need to have good internet connection, so I go to my email inbox and open a new email with a link to get access to a meeting room, check the picture. I can make the necessary changes to the font size and color of the screen. When the class is over, the captioner sends me a detailed report of everything that was said in class in less than 24 hours, much better than taking notes in class! I love to read it after class so I can study it. During class I try to understand as much as I can and I read from the tablet every time that any of my peers speak. I totally feel more involved in class. I’m happy to know that now I really understand what’s going on in class.

Obviously there are still some issues with the CART. For example we couldn’t set it up entirely a couple of times due to slow internet. Another time I tried an app which lets me see the same screen as my captioner, but that would make everything appear after a five second delay or so. Even with normal Internet there’s a little delay since my captioner would hear and how fast she can type.

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I don’t feel left out of class nowadays. As I can follow better what’s going on in class I can participate more, and feel more involved. I’m really looking forward to attaining my masters degree, and also helping other people just like me, who does not know about all the ways we can get the extra help for coping with hearing loss. I wish every kid in school could know about CART, if your school doesn’t offer CART for now, let other people know about it. Think about this, maybe in the future someone else can benefit from CART just like I am right now.