Sunday, August 12, 2007

Twists and Turns: Journeys with Implants Now Online

Twists and Turns: Journeys with Implants is now online:

Twists and Turns: Journeys with Implants.

Update on Abby in the article: Abby went for surgery this summer and is now in the process of re-learning sounds with her new implant.


Jeannette said...

Thanks for writing this. When we were researching the CI for our son, it was hard to find the cons. It was so nice to read your article and find in one place information we learned piecemeal.

Deaf Socrate'sTrail said...

What have I seen the article? Sadly, there are too many false hope. Nobody stand up for straightforward fact, there are too many hearing parents often refuse to accept that their childs are Deaf and don't want their deaf children to be an intergral part of our Deaf community. I am sorry to say that number of hearing parents have real problem with denial!!!! What is wrong with Deaf child to be oneself instead of forcing their children to wear cohlear implant? That is a kind of Dr Moreau?

Sange said...

After reading many articles on CI's, it makes me glad my son is only HOH at this point. If he was deaf, I couldn't tell you what I would do.

My thoughts go to the parents who have to go thru that process. This article was excellent and should be presented to everyone who is researching CI for their children or themselves.

Anonymous said...

Great article, startling really how much information can be left out in the delivery given the parents via the medical community.

This quote was fairly profound and somewhat vindicating for me.

"I get so irritated," says Sara, "when I hear that 'Child X was mainstreamed after the implant.' Mainstreaming is not a success, it's a location."

Philip. said...

A very interesting article!

AJ Holleman said...

This article definitely has a place, and I appreciate you writing it, Karen. But parents who read it should put it into perspective. There are overwhelmingly more successes today than glitches, and the chances of it working are very high.

I was disturbed by one thing Sara, a mother quoted in the story, said,

"My gut tells me that it's the kids (or adults) who liked wearing hearing aids, who look down your throat as you speak, who find speech therapy strangely interesting, who can make sense even out of their limited hearing, []... these are the kids who will make better use of implants."

This really paints the wrong picture entirely. The beauty of the CI is that the sound it provides is so clear, that kids don't NEED to look down anyone's throat. They can hold conversations in the dark as easily as in daylight. They can have a conversation with Mom sitting directly behind her in the car. And Sara's saying this really is an insult to all the successful kids out there (and there are MANY), portraying them as some sort of freaks.

My son struggled with hearing aids for 3 years, and although he heard some sounds, it was not enough to learn to speak or understand spoken language. The sound he got from the CI was orders of magnitude better, and if he hadn't gotten a CI, he would not be in a regular school with age appropriate speech and language today. The CI technology has VASTLY exceeded my expectations. In my experience, it is most definitely worth the leap of faith that it will work.

Sara said...

I am distressed that you took my quote to mean that there aren't successful users of implants. I intended to point out that in my experience it is the child who has an innate auditory spark who is the best candidate... those who are very in tune with listening and watching before the implant. My own child uses her two year old implant well since she got it at age 7, when she lost all meaningful hearing that year. I've seen too many of her friends and adults get the implant and never "take" to it despite much effort on the part of the child and the families. My layperson's conclusion is that the kids who don't seem interested in the auditory world or watch people speaking or try to use their hearing aids to the best of their ability are likely not going to do well with the implant.
I just want parents to know that the CI doesn't work for every child. Some centers are better than others at explaining this.
I thought Karen made it clear that there are many success stories right at the beginning of the article. Count us as one, but we want people to have the best information they can ahead of time.

AJ Holleman said...

Hi Sara,
I appreciate you commenting, and understand better where you are coming from. But, your experience seems quite different from mine. I know many children (and adults) who have done very well with their implants. I would estimate that from the schools my son has gone to and the groups I have been involved with, I have met close to 100 children who hear well enough with the CI that they don't need to speech-read at all. My son never looked at peoples faces before he had hearing aids (when he was not taking to spoken language at all) and does not now any more than a hearing person. The sound quality he gets out of the implants is that good. It makes listening - just listening - possible.

So what I object to is that although it is your experience, speaking authoritatively about needing to "look down people's throats" as a requirement for success with the implant could be misleading to parents new on this path. It's the people for whom it does not work well that need the additional visual cues. For the majority of children who receive implants at a young age, have good follow-up with professionals and good follow-through with families, cochlear implants work remarkably well and provide clear sound, allowing them to listen and understand with their eyes closed.

The fact that you know so many people for whom it does not work well actually makes me question how the devices are being mapped, and what population are you referring to in the first place. Are these children who went without sound at all until age 5 or more? Are they prelingually deaf adults who did not benefit much from hearing aids? That can make a big difference compared with children who get implants young or late-deafened adults. Or is it worth it for you to get a second opinion from another audiologist? It is not trivial to map children, and though hopefully not, an inexperienced or poorly-trained audiologist could explain the pattern you are seeing.

While Karen did open and close the article with the success stories, for a worried parent of a newly-identified child, it can be hard to put into perspective, and potential negatives can loom larger than life.