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!

The Call of a Mourning Dove

This has been another busy week in our house. Everyone seems to come and go at different hours. We have also been hosting a Latvian family in our home this week and they have been a pleasure. The Latvia Methodist Youth Choir is touring the U.S. for three weeks in June and we have had the pleasure of hosting the choir director, Maris, his wife, Indra, and their six-year old son, Gustavs. Maris speaks English well so we are able to communicate. Gustavs is very quiet and whispers in his parents' ear if he wants to tell us something. It's so cute! Gustavs also has brand new shoes with wheels in the heels that they purchased for him in the states. He skates/rolls everywhere on them and is pretty good at it! When he outgrows the shoes, he plans to cut out the toes so he can keep wearing them! He also likes Apple Jacks with warm milk for breakfast and before bedtime. I've had to get up early every morning to prepare breakfast for them and then take them to the church. We pick them up in the evenings and bring them back home. They arrived last Sunday evening from North Carolina and will leave on Monday morning for Alabama and Texas. We heard the choir sing this afternoon and they have beautiful and unique voices. Wow. The concert for the church is tomorrow evening and we plan to attend that.

This afternoon I spent some time on our front porch writing emails. In the midst of the birds chirping and the leaves rustling in the wind, I kept hearing a whoo-ooo-ooo sound off in the distance. It was a soft soothing sound but I knew it wasn't an owl because owls don't *who* in the middle of the day. I asked Steve to come outside to tell me what it was. He said it was a mourning dove. And I heard it off and on for several hours. The cool thing is that this demonstrates the benefit of bilateral cochlear implants. Binaural hearing has made it easier for me to hear speech and other sounds around me. One ear cannot do all the work. When the same sound like the mourning dove call is heard from both sides, I become aware of the sound at softer levels. That would also explain how I was able to hear a fly on tinfoil. I know you all are still laughing about that and shaking your heads in amazement!

I still have yet to hear an owl. . . my friend, Jessi, at work says she hears one at her house every morning when she gets up with her baby. She sits with her daughter on their back patio that faces the woods. I told her that one of these mornings she might find me in my pajamas, robe and cup of coffee on her doorstep at 6:30 a.m to sit with her and Shelby!

I am making more phone calls with ease. This past week I even called the plumber all by myself - this was someone I did not know and I was able to understand him asking what the problem was, where we lived, and I understood that he would be there before noon. It just gets better and better.

I'm leaving on Thursday for the HLAA convention for four days and cannot wait. I need a break and some time away! It will be fun to meet other people with hearing losses and cochlear implants, professionals who deal with the deaf and hard of hearing, see all the latest gadgets, hear speakers, etc. I am also looking forward to seeing Jennifer again and meeting other people that I've heard about or chatted with online.

The Governor still hasn't made *the announcement* yet. . . I'm tempted to post it here but he has the first right to make the press announcement. . . stay tuned. And Happy Father's Day to all you fathers who read this blog.