This is a must see video! It describes the hearing loss journey of Josh and Sam Swiller, their cochlear implant surgery, activation, therapy, and life afterwards perfectly....and is almost identical to my hearing loss experience and results. It is captioned, too!
What a gift technology has given to the deaf and hard of hearing....Enjoy!
Soundproof Trailer created by filmmaker Rebecca Haimowitz.
Showing posts with label deafness. Show all posts
Showing posts with label deafness. Show all posts
Wednesday, September 16, 2009
Monday, August 24, 2009
A Lotte Update
After I sent a response to Lotte's father about "the experiment," I received the following response. Lotte's father has given me permission to share it:
"Hi Laurie,
Thanks for that experiment. And a thorough job you did...Was great to hear how you perceived the sound. "Distant and nasal" is a description we can use. With this we will try to have Lotte to wear it on the ear. With the battery still on the shoulder perhaps. We'll do some experimenting ourself. Thinking of it, the fact that the BTE is not just hanging on the ear, but also hugging the bone of the head, might be a reason for a different sound. Like we, and you said, Lotte will decide for herself. And with her being used to the current sound, changing might not be the most popular thing to do. But we'll try in the weekend. I don't think the distance between face and microphone makes the difference, but who knows. Lately Lotte has been talking louder. We feel that it has to do with the vacation. Being outside for so much (weather in Holland and Italy was great) might require more sound in order for her to hear her voice in the same way. Another factor might be the fact she has been excited 24/7 during the holiday... Happy bunny...
By the way... Have you found ways that you benefited from it? Again, thanks for your help. It has been very informative."
Lots of love, Onno & Marieke B----, on behalf of Lotte
I wrote back and said this:
As far as benefitting from having the processors on my shoulders, I can see where it might help in certain situations, like if I was in surgery or in bed for an extended period of time, doing an outdoor activity like boating, skiing, or something active where I would not want to lose my processors if they fell off....
And later, another response:
"This weekend we tried it on the ears. With the batteries on the back, and with the complete BTE on the ear. Lotte doesn't mind, but still prefers them on the shoulder. So do we.... after she came back with a broken BTE. It had fallen off, and 2 of the 3 little pins of the bayonet-closing thingy (how on earth do you call that) broke, making it impossible to close it. Well, it's on tape now. Duct tape will be the next move..Anyway, we put it higher on the shoulder than before... not much change though..."
Poor Lotte, she now has a broken processor after trying it on her ear...I feel bad for her. Hopefully she will get a replacement processor soon!
"Hi Laurie,
Thanks for that experiment. And a thorough job you did...Was great to hear how you perceived the sound. "Distant and nasal" is a description we can use. With this we will try to have Lotte to wear it on the ear. With the battery still on the shoulder perhaps. We'll do some experimenting ourself. Thinking of it, the fact that the BTE is not just hanging on the ear, but also hugging the bone of the head, might be a reason for a different sound. Like we, and you said, Lotte will decide for herself. And with her being used to the current sound, changing might not be the most popular thing to do. But we'll try in the weekend. I don't think the distance between face and microphone makes the difference, but who knows. Lately Lotte has been talking louder. We feel that it has to do with the vacation. Being outside for so much (weather in Holland and Italy was great) might require more sound in order for her to hear her voice in the same way. Another factor might be the fact she has been excited 24/7 during the holiday... Happy bunny...
By the way... Have you found ways that you benefited from it? Again, thanks for your help. It has been very informative."
Lots of love, Onno & Marieke B----, on behalf of Lotte
I wrote back and said this:
As far as benefitting from having the processors on my shoulders, I can see where it might help in certain situations, like if I was in surgery or in bed for an extended period of time, doing an outdoor activity like boating, skiing, or something active where I would not want to lose my processors if they fell off....
And later, another response:
"This weekend we tried it on the ears. With the batteries on the back, and with the complete BTE on the ear. Lotte doesn't mind, but still prefers them on the shoulder. So do we.... after she came back with a broken BTE. It had fallen off, and 2 of the 3 little pins of the bayonet-closing thingy (how on earth do you call that) broke, making it impossible to close it. Well, it's on tape now. Duct tape will be the next move..Anyway, we put it higher on the shoulder than before... not much change though..."
Poor Lotte, she now has a broken processor after trying it on her ear...I feel bad for her. Hopefully she will get a replacement processor soon!
Sunday, August 23, 2009
A Very Special Request
Last month I received a very special request from another blogger who lives halfway around the world in Norway. His daugher, Lotte, wears the BTE (Behind The Ear) Cochlear Freedom Processors and is also bilateral like me. Her father asked me to be a guinea pig for an unusual experiment....
You see, Lotte does not wear her processors behind her ears but on her shoulders in little handmade pouches. Several medical specialists do not like the way she wears them but really cannot provide an answer why her cochlear implant processors should be worn on her ears. Lotte was implanted at a young age and has always worn her "ears" on her shoulders. And does not want them any other way. I know of other bilateral children whose parents put the processor(s) on their child's shoulders because it keeps them from falling off their small ears or manipulating the controls or losing them. Lotte's parents want to have some ammunition the next time the doctors and audiologists started complaining.
So, Lotte's dad reached out to me via Facebook and asked me to try wearing my processors on my shoulders for a few days so that they could have an adult opinion when this issue came up. Lotte is still too young to give them feedback on what or how she hears because she does not know anything different. Her parents are curious to know if sounds are softer on the shoulder or more difficult on the shoulders as opposed to being on the ears. They also wanted to know if there was a difference if the processors were covered with a coat or jacket, whether sounds were easier to hear without the wind blowing across the microphones or they were more muffled. I tried hanging my processors off my ears but my coils were too short to notice any changes in sound perception. After we traded several messages, here is what I got in the mail....this...
You see, Lotte does not wear her processors behind her ears but on her shoulders in little handmade pouches. Several medical specialists do not like the way she wears them but really cannot provide an answer why her cochlear implant processors should be worn on her ears. Lotte was implanted at a young age and has always worn her "ears" on her shoulders. And does not want them any other way. I know of other bilateral children whose parents put the processor(s) on their child's shoulders because it keeps them from falling off their small ears or manipulating the controls or losing them. Lotte's parents want to have some ammunition the next time the doctors and audiologists started complaining.
So, Lotte's dad reached out to me via Facebook and asked me to try wearing my processors on my shoulders for a few days so that they could have an adult opinion when this issue came up. Lotte is still too young to give them feedback on what or how she hears because she does not know anything different. Her parents are curious to know if sounds are softer on the shoulder or more difficult on the shoulders as opposed to being on the ears. They also wanted to know if there was a difference if the processors were covered with a coat or jacket, whether sounds were easier to hear without the wind blowing across the microphones or they were more muffled. I tried hanging my processors off my ears but my coils were too short to notice any changes in sound perception. After we traded several messages, here is what I got in the mail....this...
... and this! They sent me some "pouches" for my processors to clip on to my clothing, a pair of long coils, and the sweetest note! I have a feeling that Lotte put those stickers on! I love the beautiful handwriting, too.
When I was Lotte's age until the age of 20, I had the most powerful body hearing aid available on the market and wore it tucked in my bra. I was very creative hiding my cords using my bra straps and rubber bands because I did not want anything to show. My microphones were in front of me on my chest. In fact, when I talked on the phone, I looked like this:.png)
I never really knew a difference having my "ears"on my chest because I did not have anything else to compare with and it was all I knew. And heard enough to get by with what little hearing I had.
Later, as an adult, I was tired of the "box" on my chest and got BTE hearing aids, mainly for cosmetic reasons. Even though the BTE's were not as strong as the body aid, I did not care because I wanted to "look good" and not have to bother with the cords, etc. My hearing was so poor that I really couldn't tell the difference between the body aid and the BTE's on my ears, except the BTE's were softer and not as strong.
I was honored and happy to do this "experiment" for Lotte and her parents. Not everyone can move their "ears" to their shoulders! The first thing I noticed was that my voice and sounds were very "nasal" or muffled, as if I had water in my ears or was in a swimming pool area. That did not change after a few days. But, the brain is an amazing organ and probably would have adjusted if I had kept them that way for a longer period of time. It was also very inconvenient having my processors on my shoulders because I could not change my batteries or change my programs or settings quickly. Lotte's parents probably handle those details for her. And, it was almost impossible to use the telephone. I had to move the processors to my ears to use the phone. Also, there really was no difference with or without a coat or sweater covering the processors on my shoulders. When I wear a hat over my BTE processors, I hear fine. I do like the sound of the wind so it does not bother me if it is there or not.
But, after I thought about it for a while, I realized that the distance from my ears to my shoulders is probably greater than for a child like Lotte. And the space from shoulder to shoulder is a greater distance on an adult when compared with a child. So, Lotte's processors are probably closer to her ears than mine are when I wore them on my shoulders. That may change as she grows. I still got "surround sound" no matter where the processors were located.
My advice to Lotte's parents was to let Lotte make the choice how she wears her processors. Why change something if it isn't "broken?" It should be her choice to move her BTE's to her ear. She may change when she gets older for convenience, or when she wants to look good, or when she sees how others wear theirs, etc. She does see other children with BTE's on their ears with amazing contraptions to keep them there but her father says she will follow her own way. She does not complain and is a happy seven year old going to school, interacting with friends and family, and even playing the piano. I really do not not think it should be an issue because she is hearing sounds, communicating, and is getting surround sound. There really is no "right" or "wrong" way to wear a cochlear implant processor as long as a person can hear!
To my readers, if you are a parent of a child that wears cochlear implants or hearing aids, an adult CI user, an audiologist or other health professional reading this, please do two things for me:
1. Leave a comment on your thoughts or experiences on this post for Lotte and her parents, AND...
2. Go visit Lotte's blog and say "hi!" She'd love to hear from you!
Wednesday, July 15, 2009
A Must Read....Jennifer's Post
My friend, Jennifer, posted a very moving and poignant post yesterday.....it is a must read! She shares her bilateral cochlear implant journey from her heart at SURROUND SOUND...
Monday, June 15, 2009
The Wellspring...: Ear number two!
Below is another blog that I like to read. Some of it is hearing related but mostly concentrates on their family and pictures. This couple adopted their daughter from Quito (I think) and she went bilateral today! Click here to see more! The Wellspring...: Ear number two!
Tuesday, May 19, 2009
Another Friend Goes Bilateral!
Another friend has taken the step to bilateral hearing! I met Becky a few months ago because she had many questions about having two cochlear implants versus one. She traveled to Nashville on Sunday from Knoxville with some members of her familly and had her second CI surgery yesterday! And is doing amazingly well. Check out her blog here and give her some encouragement! She will be activated in three weeks on June 9th!
Monday, August 25, 2008
A Letter From My Father - Part 3
My father's letter continues. . .
Laurie's mother should be given the majority of the credit for ensuring Laurie's speech training and for spending hours and hours listening to her and her problems and for encouraging her to "never give up" on being able to "get along" in a hearing world.
She taught Laurie how to be organized and to get tasks done in a timely manner. For example, all through middle school & high school, Laurie would do her homework as soon as she got home from school. It was always done before supper so she could watch television afterwards. She got herself up each morning with a light timer, got dressed for school and was always ready when it was time to catch the bus. (Mom usually stood by the window listening for the bus for me and made sure I got out the door in time.)
The best thing that happened to Laurie was meeting her husband, Steve, when she started her freshman year at Wright State University (Dayton, Ohio) in 1975. They hit it off together! And he understood Laurie's hearing loss and was patient in dealing with it. They became engaged by March 1976 and were married in November 1976.
Dad's Recollections of Laurie:
1. She was always good with her two brothers and sister. (Most of the time. :) Kathy and I had some nasty fights! But we are best friends now!)
2. She listened to my wife & I about doing things.
3. She was always loving & kind.
4. Others liked to be around her. She had lots of friends & cousins who enjoyed being in her company.
5. She was always neat in dress and appearance.
6. She was a good babysitter.
7. She enjoyed watching TV and listening to music with earphones or a headset. (I also listened to LP albums with the volume turned all the way up in my room.)
8. She surprised her mother and I in many ways in being able to hear and communicate with people. (I found other ways to compensate in order to "get the message" or faked it when I didn't really understand.)
9. Her teachers were always impressed on how well she could learn, even with a hearing disability.
10. She promised her mother that she would get her college degree when she became engaged and wanted to be married. (She did!) (After transferring from four different colleges, I finally graduated from the University of Tennessee with my Finance degree in December 2003.)
"The End" by Dad, Edwin J. Royer
Thanks, Dad. I love you. Laurie
Laurie's mother should be given the majority of the credit for ensuring Laurie's speech training and for spending hours and hours listening to her and her problems and for encouraging her to "never give up" on being able to "get along" in a hearing world.
She taught Laurie how to be organized and to get tasks done in a timely manner. For example, all through middle school & high school, Laurie would do her homework as soon as she got home from school. It was always done before supper so she could watch television afterwards. She got herself up each morning with a light timer, got dressed for school and was always ready when it was time to catch the bus. (Mom usually stood by the window listening for the bus for me and made sure I got out the door in time.)
The best thing that happened to Laurie was meeting her husband, Steve, when she started her freshman year at Wright State University (Dayton, Ohio) in 1975. They hit it off together! And he understood Laurie's hearing loss and was patient in dealing with it. They became engaged by March 1976 and were married in November 1976.
Dad's Recollections of Laurie:
1. She was always good with her two brothers and sister. (Most of the time. :) Kathy and I had some nasty fights! But we are best friends now!)
2. She listened to my wife & I about doing things.
3. She was always loving & kind.
4. Others liked to be around her. She had lots of friends & cousins who enjoyed being in her company.
5. She was always neat in dress and appearance.
6. She was a good babysitter.
7. She enjoyed watching TV and listening to music with earphones or a headset. (I also listened to LP albums with the volume turned all the way up in my room.)
8. She surprised her mother and I in many ways in being able to hear and communicate with people. (I found other ways to compensate in order to "get the message" or faked it when I didn't really understand.)
9. Her teachers were always impressed on how well she could learn, even with a hearing disability.
10. She promised her mother that she would get her college degree when she became engaged and wanted to be married. (She did!) (After transferring from four different colleges, I finally graduated from the University of Tennessee with my Finance degree in December 2003.)
"The End" by Dad, Edwin J. Royer
Thanks, Dad. I love you. Laurie
Sunday, August 10, 2008
A Letter From My Father
A few weeks ago my father sent me a letter answering some questions about my early years when my hearing loss was discovered. I would not be where I am today if it wasn't for this early intervention in my hearing journey by my parents. Through their determination, strength, & perseverance they made sure I had every option available to me. I still had some questions about my early "deaf" history and since Mom isn't here to answer them for me (she lost her battle to pancreatic cancer in 1992) I sent my father an email with six questions for him to answer. I had planned to call him on the phone that evening to get his answers but by that afternoon he had written six pages and faxed them to me! (Dad doesn't use the computer but his wife does.) Mom was the biggest cheerleader for me and my brother (he has a severe hearing loss, too, but still wears hearing aids) and spent much time and research looking for the best options for us. She was also a teacher so it was only natural for her to "teach" us to talk and communicate and show us the world.
I spent many years in denial about my hearing loss and didn't want people to know about it. So, I did not want to talk about it and did not ask many questions. Now that I can hear with my cochlear implants and have so many connections with the deaf world, I realized that I had some "blanks" regarding my early years. I wanted to know what Mom and Dad felt and experienced when my hearing loss was discovered. I wanted to know what made them realize I couldn't hear. What clues did they have? How many times a week did I go to therapy before I started kindergarten? Etc, etc, etc. I will share some excerpts from Dad's letter. . .
My Recollections of Our Daughter's Early Hearing Problems
by Edwin Royer
We thought Laurie was normal until she was about 2 years old in April 1959. Our friends had a child who was also 2 years old and had started talking and saying words. Laurie didn't verbalize at all. So, her mother took her to the family doctor and asked him "why Laurie wasn't talking."
He didn't know, but advised us to take her to the Children's Hospital in Buffalo, New York and have her tested for hearing loss.
The result by the hearing specialist was that Laurie had a severe hearing loss up to 85%. But, she could hear loud sounds, and had 10%-15% residual hearing. We were advised to have her begin hearing therapy immediately in May 1959 at age 25 months.
My wife took her to Buffalo Children's Hospital three times a week (M-W-F) for 30 minute sessions. It was determined that she could vocalize with instruction.
In June 1959 the State of New York purchased a chest type (body worn) bilateral hearing aid for Laurie and she made excellent progress through September 1959 when we moved to Columbus, Ohio for her Dad's new job and graduate school at Ohio State University. (My note: this was news to me. . . I did not know that the State of New York provided me with my first hearing aid. Mom & Dad were newlyweds in their mid-20's living on a small budget while my father was working on his master's and doctorate degrees. I'm sure they appreciated this service. My parents made many sacrifices over the years to afford the hearing needs for me and my brother and never once complained.)
In October 1959 we enrolled her in speech therapy at the Ohio State University Speech & Hearing Center on campus. My wife took her there three times a week for individual sessions.
(Re: How her mother and I felt when we found out in April-May 1959 that Laurie was "deaf.")
We were devastated and wondered how it could be that our daughter couldn't hear. There was no hereditary deafness on either side of the family that we knew of.
We were told that Laurie could go to a "deaf school" similar to Gallaudet where she could learn "sign language" and learn to communciate that way. But, given this choice usually meant that children sent there NEVER learned to talk and communicate normally. Given that Laurie had some residual hearing and responded to training and voice stimuli and was learning to "lip read" and speak words in a somewhat normal manner, we were told that with extensive effort and training that she could "possibly" learn to "hear" and "listen" and "speak" like normal children who weren't "deaf."
We decided to give the latter choice a try and that we would encourage her to "mainstream" in pre-school, kindergarten, & and regular school. (*It was the correct decision as we would later find out.*)
To be continued. . .
I spent many years in denial about my hearing loss and didn't want people to know about it. So, I did not want to talk about it and did not ask many questions. Now that I can hear with my cochlear implants and have so many connections with the deaf world, I realized that I had some "blanks" regarding my early years. I wanted to know what Mom and Dad felt and experienced when my hearing loss was discovered. I wanted to know what made them realize I couldn't hear. What clues did they have? How many times a week did I go to therapy before I started kindergarten? Etc, etc, etc. I will share some excerpts from Dad's letter. . .
My Recollections of Our Daughter's Early Hearing Problems
by Edwin Royer
We thought Laurie was normal until she was about 2 years old in April 1959. Our friends had a child who was also 2 years old and had started talking and saying words. Laurie didn't verbalize at all. So, her mother took her to the family doctor and asked him "why Laurie wasn't talking."
He didn't know, but advised us to take her to the Children's Hospital in Buffalo, New York and have her tested for hearing loss.
The result by the hearing specialist was that Laurie had a severe hearing loss up to 85%. But, she could hear loud sounds, and had 10%-15% residual hearing. We were advised to have her begin hearing therapy immediately in May 1959 at age 25 months.
My wife took her to Buffalo Children's Hospital three times a week (M-W-F) for 30 minute sessions. It was determined that she could vocalize with instruction.
In June 1959 the State of New York purchased a chest type (body worn) bilateral hearing aid for Laurie and she made excellent progress through September 1959 when we moved to Columbus, Ohio for her Dad's new job and graduate school at Ohio State University. (My note: this was news to me. . . I did not know that the State of New York provided me with my first hearing aid. Mom & Dad were newlyweds in their mid-20's living on a small budget while my father was working on his master's and doctorate degrees. I'm sure they appreciated this service. My parents made many sacrifices over the years to afford the hearing needs for me and my brother and never once complained.)
In October 1959 we enrolled her in speech therapy at the Ohio State University Speech & Hearing Center on campus. My wife took her there three times a week for individual sessions.
(Re: How her mother and I felt when we found out in April-May 1959 that Laurie was "deaf.")
We were devastated and wondered how it could be that our daughter couldn't hear. There was no hereditary deafness on either side of the family that we knew of.
We were told that Laurie could go to a "deaf school" similar to Gallaudet where she could learn "sign language" and learn to communciate that way. But, given this choice usually meant that children sent there NEVER learned to talk and communicate normally. Given that Laurie had some residual hearing and responded to training and voice stimuli and was learning to "lip read" and speak words in a somewhat normal manner, we were told that with extensive effort and training that she could "possibly" learn to "hear" and "listen" and "speak" like normal children who weren't "deaf."
We decided to give the latter choice a try and that we would encourage her to "mainstream" in pre-school, kindergarten, & and regular school. (*It was the correct decision as we would later find out.*)
To be continued. . .
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