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...

... 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: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!


Vivie said...

Hello Laurie.

I am a Freedom user too , and due to problems I had with my ear level processor , I have had switched to shoulder wearing few months ago.

I couldn't honestly place any difference , but again , I had my CI directly on top of my shoulder , and the coil had a lot of manuevering room.

I started wearing it on ear on the times that I wanted to make phone calls , and when my ear could tolerate the weight.The only difference I could have was that sound could be localized.

Now I wear it half and helps me.When I'm going to be loaded or in places that I'm afraid that I'll lose the CI I'll wear it on shoulder , or when I'm with kids that want to be tumbling etc.or when I'm at home relaxing.

When I'm out and just walking , or visiting friends , or just being nice I wear it on the ear because I do not want the cords to be appearing.I don't mind the pouch at all.Also on phone calls etc.

I think that something that would be in the middle ground would be a longer babyworn cord for the people that find Freedom that is too weighty.I am one of them.

Sorry for the long comment!! Hope u're well!

Laurie said...

Vivie, thank you so much for your comment! I know Lotte's parents will appreciate your input!


Sam said...

It must be nice to know that you are so wanted and loved across the ocean! I agree...if it isn't broken, don't fix it. Like us when we were younger and had body aids but were elated to go to BTE, I am sure she'll do the same thing!
You're an inspiration to all, Laurie! :)

Cloggy said...

Another thank you to Laurie... and to you that made the comments.. :-)


tammy said...

What a trooper you are to help another family like this and I found the results very interesting! When Aiden first rec'd his bilateral Cochlears, he would not leave anything on his ears, so we had to pin the whole device on his shirts too (we didn't use pockets, just the babyworn clips). We slowly transitioned him to the babyworn setup, and now he just wears the processor on his ears. I saw a difference in his responses in the beginning, with the whole thing pinned, I think because he kept the coil on longer this way. Now that he's used to something on his ears, we're seeing the same responses as before ... although he still tears the dang things off a lot! (trying to say with a smile! LOL)