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Cochlear Implant - An Emotional Journey: How my Son got to Hear

1 - I can do better 2 - Jury's out 3 - Pretty darn good 4 - Splendiferous 5 - Awesometastic (by 4 people)   Your rating: 1 - I can do better 2 - Jury's out 3 - Pretty darn good 4 - Splendiferous 5 - Awesometastic

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Rated G. (Control what you see)

Cochlear Implant

 

A cochlear implant (CI) is a system of internal and external devices that analyze and digitize sound into signals, stimulating auditory nerves in the cochlea and sending the results to the brain for interpretation.

First developed in the early 1980s, CIs have been a source of controversy among the deaf, particularly when used in prelingual children. Many feel that CIs show that the hearing world sees the deaf child as a "disabled" member of the hearing community rather than an integral member of a vibrant deaf culture. In the last few years, however, there has been a slow-growing acceptance of CIs as one more tool, like a hearing aid or speech reading.

Our Story 

We live in Norway. Medical services here is "free". Choosing to go with CI was for us not a matter of money or insurance, but choosing the right path for our child.

My son was born deaf. One year old we took the tests that confirmed this. No response. No hearing.
We had no previous history of deafness in our families, so this came as a shock to us - and the question "Why?" was what hunted us the most.

Shortly after this diagnosis he began in a kindergarten for the deaf, and started to learn sign language. This gave us mixed feelings. He was learning to communicate, but not with us. Because of a lack of resources we were not getting any sign language classes yet, and it sometimes felt like the deaf community with its subculture was trying to "adopt" our son.

A year later we learned about CI. CI is relatively new in Norway, and the debates were just starting. Most people in the deaf community told us that this would only lead to false hope and that CI-enabled children would not be deaf but not be hearing either, and would sit between two stools and thus very easily fall down. The advice was to stick with sign language. The benefits of CI was told to be very varying and uncertain.

As parents we always want the best for our children. As we saw it there were two choices and multiple different outcomes. Should we stick with sign language? Let our child find his home in this subculture where he would not be "disabled" compared to his friends? Where he would be able to understand everything in class and would not be an outsider. This seemed like the choice that would be the easiest path.

But what if...? What if the benefits of CI was so big that he would be able to function less handicapped in the oral world? Is easiest always the right way to go? Were we prepared as parents to put in the extra work that would be needed to follow up our child all the way to adulthood?

It's easy to get myopia when facing these kinds of choices, so we decided to try to look into the future - and to look at what goals we needed to reach. That helped us to see sign language, witch were our current goal, only as a tool for the real goal: Communication.

We decided that we did not want to choose the easiest path. We wanted the most rewarding path, and we were willing to fight every obstacle and beat the odds.

Time for Surgery 

Step by step we decided to climb this mountain of hard work. - We decided to go with the surgery, but stick with sign language.

He was child #52 operated in Norway.

Two and a half year old and newly operated he cried and was afraid. All he wanted was to sit with his mother, and he would not stop crying.

I knew then that the climb had began, and I felt that we had taken the first step. And there I stood. On the fist step. Looking up at this never ending mountain of hard work it suddenly seemed overwhelming.

But then Johs' mother had to go to the restroom and I was alone with him on my lap. I asked him (signing) if he was all right. He looked up at me. Deep into my eyes. Then he signed to me: "I'm scared........." and then be looked at me even deeper into my eyes. And he continued: "But I know daddy is looking after me".

I knew then that we would be ok. Together and with love we would beat every obstacle that would come in our way. There was no doubt.

And then there was Sound! 

Just days after Johs turned three he got his CI activated. As expected there were no immediate response. They were very careful with how much effect they used on the electrodes the fist weeks.

But then, two weeks later they turned up the "volume" and he could tell us that he heard the individual sounds that they were sending through to him!

After a week of adjusting he was ready. But the benefit was small. His brain was not used to the sounds and his reactions was sometimes more of discomfort that delight when a sudden sound appeared. But this would change we were told. And boy did it change.

A month after activation Johs would respond to his name. A month later he would go out in the morning and sign "I can hear cars!"! Then he would sign "I can hear a bird!". Then "I can hear a plane!"!

Six months after his operation he was speaking small words and was able to mimic a lot of the sounds we told him.

A year after his operation he was saying a lot of words.

A year and a half after his operation he was talking in full sentences. By his own choice, he was no longer using sign language as his primary language.

Two years after the operation he did oral tests that scored him with a "moderate hearing loss". He then began in a mainstream kindergarten where he functioned pretty close to any other hearing child and thrived!

Because he was born late November we postponed school for one year to give him the extra time to mature and develop further oral skills. School has since been a very good experience. They provide him with the right tools to succeed.

He is now ten years old with age appropriate oral skills. He enjoys going to a mainstream school, soccer practice, and has lots of friends.

YES; he must use strategies to compensate for his disabilities but they are very transparent and none intrusive to his environment.

He has learned to break down and take charge of communication assertively. He ask people to get attention before speaking, suggest that they face him, and ask them not to shout. Knows when to ask for a "rephrase" instead of a "repeat", know how to apply a clarification strategy, and how to ask questions.

We're still not at the end of our climb, but right now everything points in one direction: We will climb every step. Fight every fight. Never chose easy over better. Keep him well seated on one stool.

Recommended Reading 

These books are great resources for you and your network.

Cochlear Implants: A Practical Guide

From implant design, speech processing strategies, assessment and rehabilitation of children and adults to future developments. Chapters written by implant users and their parents give fascinating insight into the experience of hearing again with a cochlear implant.

Amazon Price: $86.15 (as of 12/02/2008) Buy Now

School Professionals Working With Children With Cochlear Implants

This new book is a comprehensive resource for school-based professionals.The book is the ideal guide and supplies the school professional with tools for providing the best possible direction and options for children with cochlear implants.

Amazon Price: $49.50 (as of 12/02/2008) Buy Now

Baby Einstein 

Baby Einstein videos are a great resource! The kids love and learn from them, but most of all it's a great help for the parent doing auditory-verbal training that might otherwise be hard-pressed to find a creative way to extend the learning process.

Reader Feedback 

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I'd love to hear from other parents in the same situation, and especially how CI children adopt in mainstream schools. Why don't you create your own page like this? It's free, fun and easy! Sign up here

If you do, please let me know. :)

DeafMom wrote...

Hi there! I'm Karen, the gal that Groovy is talking about. I'm enjoying your lens!

ReplyPosted June 27, 2007

Christene wrote...

Blessed by a SquidAngel

ReplyPosted May 02, 2007

groovyoldlady wrote...

I highly recommend you go to my friend, Karen's blog. She and her husband are deaf and have 3 deaf/hearing impaired children. She writes often about the clash between the deaf and hearing communities:
http://putzworld.blogspot.com/ . She Squidoo's too: http://www.squidoo.com/deafhardofhearing/

ReplyPosted April 16, 2007

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atta

About atta

I'm a parent to three children. The oldest was born deaf.

Today CI is accepted by most cultures and has become the norm for deaf born children. 8 years ago this was quite different, and we felt challenged and alone. This is a manifest of our emotional journey.

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