Thursday, June 21, 2007

Cochlear Implant Article Printed

Back in February, I started interviewing families and deaf adults with cochlear implants for an upcoming article in the Hands & Voices Communicator. The idea for this article came about when my daughter's friend had an implant that suddenly stopped working. It was a tough journey for her to be re-implanted and adjust to new mappings. She is now enjoying her Beatles music through her implant again.

If you recall from my previous post, I took some criticsm for attempting to write this article.

It was one of the hardest articles I've ever written.

Twists and Turns: Journeys with Implants is available in the current Hands & Voices Communicator. Join Hands & Voices and receive quarterly issues of this excellent newsletter.

Here's an excerpt from Twists and Turns:

“Families who choose implants are set up to either succeed with the implant, or fail,” said Susan Raad, owner of Communication Clubhouse in Illinois and mom to two deaf and hard of hearing children.

Susan’s son, now 13, obtained an implant at 18 months with good results.

“The very first day, he responded to a dog barking!” Susan recalled.

Despite a background in speech, language and audiology, Susan found herself vulnerable as a parent in a field that is often polarized. Prior to obtaining the implant, a doctor suggested that she pursue a certain method of communication, and Susan found herself pursuing it, even though her son’s audiogram showed no response.

“Even with my background, I found myself acting in irrational ways based on my hopes as a parent, rather than what I knew from my academic background. We often talk about implants in an either/or situation. If the implant takes off, it is considered a ‘success’ and our child has ‘succeeded.’ But if an implant doesn’t work for a child,” she continued, “it is considered a ‘failure’ and parents begin to question what they did wrong. We begin to humanize the technology.”

“What’s more,” said Susan, “it’s a technological crapshoot. Most of the time, the odds are in our favor, but what do we do when it doesn’t go in our favor? Families end up blaming themselves, feeling like they haven’t done enough.”

Susan believes that the idea of “choice” is a misleading one. “If parents are told they can simply choose a path for their child based on the decisions they make,” she says, “then what happens if their child isn’t able to function on that chosen path—does that mean they’ve failed?”

She shakes her head.

10 comments:

mishkazena said...

Why was it one of the hardest articles you've ever written?

Karen said...

Mishkazena,

It was one of the hardest articles partly because I was fried on some forums for even attempting it and mostly because of the interviews that I did--there were several that didn't make it into the article, especially some from deaf adults who shared their struggles and incidents that happened to them after implants. For those that have gone through the surgery and did not obtain good outcomes, my heart went out to them.

Anonymous said...

Deaf in the City at
http://surdus.blogspot.com/
had something interesting on CIs.
I'm surprised there are no replies there in response to that. Anyway, just throwing this in...I know nothing about CIs except for the basic info.

Badthing1 said...

Hi Karen :)

As someone who used to work with the disabled, in my opinion, the Cochlear Implant is one of the most fabulous inventions of our modern world.

I understand the emotional challenges that you faced in writing your article and I applaud you for doing it, my sensitive friend. HUG

The best to you and to your family.

Daisy said...

Fascinating...the story behind the story. Cochlear implants are a tough decision, and "polarizing" puts it mildly. If my hearing reaches a point where my hearing aids no longer work, I will look into it.

Philip. said...

I'm not deaf myself, but find your posts very interesting!

Heather said...

Hi Karen,

I'm not a Hands and Voices member, but I really should be and your article is just the kick in the pants I needed to look into it. I heard that they are forming a chapter here in Ohio...

We just switched speech therapists, we now drive 1.5 hours each way, once a week, so that Ethan can have a therapist with experience in the area of ci children. I'm thrilled to have found someone who isn't telling us to drop the sign!

Ethan isn't performing the way the professionals would like to see with his implant, which means that he isn't really talking, or even babbling, and it's 9 months or so post implant when others would have a whole arsenal of words. I never view the implant as failing him though because he can hear beatifully with it, he just isn't talking.

That said, he is also experiencing a soft failure of some sort that has everyone baffled.

But all the crap in the world that could happen wouldn't make me feel like I've failed. He has sign language and as long as he is willing to learn and use it we will learn right along with him.

Looking forward to reading your article.

Karen said...

Heather, it sounds like you're going through a rough spot with the implant right now. I know what you mean about a ST who supports-- they're worth their weight in gold. :)

Dawn Colclasure said...

I once wrote a CI article, at the request of a former SIGNews editor. When she left, so did my chances of getting my article into print. :( I hope I can find some other place to send it!

Thank you for including an excerpt of your article. I enjoyed reading it. Where can I get a copy of the newsletter it appears in? I checked the site and can't find it online. I'm not a H&V member yet but I'm starting to think about joining them now,. :)

Congrats on the article!

minnie said...

Hey Karen,

How very fortunate all of us are to have you in our midst. You are an invaluable source of inspiration and one of the rare people who are open minded about issues impacting our wonderful kids.
Keep it up... Susan Raad