"The ear isn't working"

Today one of those huge moments.
In the beginning of Lotte's CI journey, Lotte never noticed that the CI was not working or if the coil had dropped off. She probably just went on with what she was doing, not being bothered by the lack of sound.
About 1 to 2 months ago, she started indicating that her CI was off. That is, she would come to us when she couldn't put it on herself.

Today however was the first time that the told us that the CI didn't work.
Lotte said to her mom "The ear doesn't work"
whereupon my wife said: "Can you go upstairs and get new batteries?"
Lotte answers "OK" and got the batteries..

WOW, it is so thrilling to see these kind of "breakthroughs...." !!
(AllDeaf)

Feb 2006

I'm Cloggy's wife and Lottes mum.
Cloggy said it was OK for me to chip in, problem is I usually don't take the time and sit down behind our PC other then checking my mail. I read some of your posts, and thought it would be nice to tell you a small anecdote from a couple of days ago (maybe Cloggy already told you, forgive me if so...).
Our two girls were playing upstairs, the oldest, Sanne, is hearing and 7 years old. From underneath the staircase I shouted: "Sanne, Lotte, dinner is ready!!!". Immediately I heard Lotte reply to her hearing sister: "Sanne, Sanne, come and eat!". Where we very often have to ask for a reply from the two hearing kids, we get it from Lotte spontaneously (wonder though how long that is going to last.....). Having called the other two kids "hearing", I must tell you that when Lotte is wearing her CI's, I do regard her as hearing too. Why, she has better hearing then my Mum!
Luckily, we can communicate through sign rather well, and we do believe that her learning sign at an early stage was an important "base" in order to learn the spoken language later on. For a long time we have used sign in addition to the spoken words, until we saw that Lotte herself started to use them less and less. Now we're at a stage where she will enthousiastically tell us something that obviously is important to her, she'll babble with no sign whatsoever, and we have no clue what she is talking about! Then we have to say, please use some sign so we know what you mean!!! To see her enjoying using her voice and communicating throug that voice, whether it is talking or singing, is a great gift.
(From AllDeaf messageboard.)

First post in DeafNotes

In this topic...

Hi,
I’m new here. To introduce myself, I’m the father of a 2½ year old girl that got a CI last September. Her first mapping was in November.
I’ve read a lot about the subject as one does when deafness suddenly comes in a life. Having no relatives being deaf, not knowing deaf people the travel to the deaf world that our daughter was going to be part of was and is an exciting one. Meeting deaf and hard of hearing people has been and is a wonderful experience.
We (my wife and I) started immediately with sign-language even though our daughter was only 1½ y.o. Also the other two kids (5 and 7) were participating and like sign a lot. (They were surprised that their sister didn’t reply when they spoke her language..)

Sometimes on these message boards it seems like an attack and defend-game. This is natural when two worlds look from their own perspective and have their own specific information sources. I do not know what it’s like to be deaf. A deaf person does not know what it like to hear, or lose hearing for that matter. This doesn’t mean we are not entitled to our opinions.
I want to react to some of the things said, showing another opinion, some other point of view.
One thing that was said was: (by Sweetmind)

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That's why I am so against CI because I feel that many people thinks they have the right to do with their children who are very innocent. They have to live with it but not the parents or many people who think they are doing the right thing but NOT.
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This argument is often found in pro-deaf literature. I would totally agree when the choice is between deaf or severely hard of hearing. Having an operation and then still not being able to hear, having to lip-read and using sign is not the way to go. This might have been the situation 10 years ago but today children with CI can be fully integrated in deaf and hearing society.
However, regarding operating on very young children: 3 things have to be understood. Learning of communication, of languages is ideally done between 1 and 4 years of age. This is when the brain creates all its contacts.
Another thing is that a hearing-nerve that has not been stimulated for a number of years will lose it’s ability to function.
So, for children it is important to be operated as soon as possible. Waiting for the child to be able to make it’s own decision will take 15 years. Speech will be very difficult to learn.
Also, my daughter’s family is all hearing. They would all like to use sign but for her grandparents to learn sign is a really huge task. The same for all our friends. Ideally they would be speaking sign but practically this is not done.
Of course they can give lot’s of love in other ways, communication is limited.
Is it fair to withhold this from a child by not operating?

Another thing I would like to comment on (by DaytonCN) is:
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I am scard to have such a huge surgery.
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It used to be a huge surgery and when you look on the net you would see kids with flaps of skin being pulled back and huge bandages. Not any more.
My daughter was operated on both sides in 1 operation. She woke up after 1½ hours and was annoyed by the drip going in her foot (for fluids). She started making puzzles and looking at images. Felt a bit sick, threw up, got 1 aspirin and started eating. This all in the first 3 hours. Then we couldn’t hold her any more and she started to use the tricycle to go about in the hospital.
The thing is, it was a huge surgery 10 years ago, 5 years ago. Now it’s microsurgery. Her scar is 7cm long (2½ inches). She wore plasters, no bandage.

Another comment on the following: (also by DaytonCN)
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One thing to remember is that CI doesn't cure hearing loss. If the CI is not on you will hear nothing. In my opinion it is nothing more than a sugeral hearing aid. The only reason I am thinking about getting it is because of my type of hearing loss. The sound from the CI is not the same as natural hearing. It is not going to "cure" me or any other deaf person.
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CI doesn’t cure anything, you’re right. CI provides a way of perceiving sound. It’s not a cure. Regarding the “sound”, I have seen a video of a 50 year old man who had lost it’s hearing for 5 years before getting a CI. Even though the sounds were strange at the beginning, he got his hearing-“image” back again. This means that he recognized his wives voice. Birds sound as he remembered etc. The brain is a powerful organ. Blind people will still see the persons faces that they knew before they became blind (they will just not get older, these faces) People that become deaf and learn to read lips will still hear the voice. I read about a man that heard his brother talk to him until the brother put his hand in front of his face. Then the sound stopped!! The brain remembers a lot.

I’ll leave it at these comments for now.
I do want to say the following.
Get your information from both sides. Both cultures are valuable, both cultures are beautiful. Make sure you get updated information. Books written 5 years ago regarding deaf culture are still valid and wonderful to read. Books written 5 years ago regarding CI are out of date.


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Of people who say nothing, few are silent.