It was bound to happen.
I'm currently working on an article that will feature families who've experienced a rough journey with a cochlear implant. The idea for the article came about when my daughter's friend experienced an implant failure. Her implant simply stopped working during dinner one night. It was really tough for my daughter's friend to have to go through several weeks without her implant, deal with another surgery and the long adjustment process afterward as she got used to a different brand of implant.
Don't get me wrong, the majority of my friends and the families that I know who have implants get great use out of them and have no regrets. If you do a search for cochlear implant stories, you will find a vast wealth of stories of implant users who are happy with them.
So when I got the idea for this story and went looking for families and adults to share their stories of difficulties, I took a beating.
How dare you discourage parents from considering an implant by writing only about the negatives?
Parents will get enough disclosure before surgery as the implant team will go over all the possible complications that can result. Why worry parents with things that happen in only 1 to 2 percent of the cases?
I also found my name dragged through the mud on one forum by someone who didn't even know me. Another accused me of running a PR campaign for the Deaf Community.
And the irony is that I'm getting closer to getting an implant myself.
All I really wanted from this article is to share the stories of families/adults who have gone through a difficult time with an implant. So that my daughter's friend and the other families that have struggled would be able to relate to others who have "walked that walk" and know that they weren't alone.
The real point of this article is not about the implants-- it's about the families' journeys. It's about sharing feelings of what families/adults have experienced when encountering difficulties with an implant. Every family/adult has a story that needs to be honored and shared, and sometimes it includes stories of families and adults who've had outcomes that fall in the that lower end of the statistic.
So if you're an adult with an implant who has had a difficult journey or a family with a child with an implant and you are willing to be interviewed, contact me at: parentsofdeafhoh (at) aol (dot) com.
Update: Here's the article-- Twists and Turns, Journeys with Implants.
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24 comments:
Karen,
By all means, keep me in touch about your articles on CI.
Please email me, EgbertPress@mac.com
The parents of Deaf children have the right to hear balanced and fair feedback on CI results.
Please keep me in touch!.....oh yes, I will be watching for your blog too.
John F. Egbert
I agree with you - they are so paranoid with any negative information.
I think we should be allowed to share what difficulties faced with an implant or even the processor itself.
One or two cases? That’s funny – I’m sure there are many but they wouldn’t come forward, that would be my guess.
I have CI myself and I enjoy it. But it’s NOT what everyone else expects.
I am deaf, hello? I like to hear, yeah…but not like a hearing person and it’s NOT perfect. I still rely on sign language as my communication method.
Nothing wrong with that at all – it’s who I am. I feel comfortable with signing.
I like how John Ebgert has put it – it’s an accessory. I strongly believe ASL is an important foundation for early communication between hearing parent and a deaf child.
I’m sad to see that they feel that it should be removed in order to focus on hearing all the time.
I wonder how the child feels? When in a group of people with overlapping conversations? Or when they just don't feel like "hearing" - how are they treated when they want to take it off for a period of time?
I have at times.
I have so many mixed feelings about children having CI and no access to ASL by audiologist/AVT’s CHOICES.
Can they guarantee your child a success – but wait. You gotta be patient – it’ll take time. Therapy and speech training takes time.
Uhm… okay, but can’t we use ASL?
No!!! It will delay the child’s language even further! Oh boy.
I’ve already gone through that as a child and I’m glad I am IN CONTROL OF MYSELF with my CI.
No one else. Thanks!
Anyway, I wish you good luck! You may email me if you wish!
Hi Karen,
Very interesting topic! Also, regarding use of ASL among those who have the CI, I wholeheartedly agree with IAmMine's comments. In fact, if it's helpful, feel free to quote/reprint the article by Dr. Jerel Barnhart in "On the Fence" as you see fit. (Dr. Barnhart makes EXCELLENT points as to why ASL should be used in conjunction with CIs for young children.)
Keep up the great work and good luck :)
Best regards,
Mark
Oh, jeez. You did the right thing, reporting both the positive and negative aspects of CI You wouldn't be a good reporter if you cover only one side.
I know a student who had a CI and it didn't work out for him. I also have few friends who have CIs, with varying results. If you contact me, I can ask them to contact you. Like you and countless others, I like to hear BOTH sides of the issue.
Disclaimers are offered before every surgery to protect the doctors and the hospital from lawsuits, but at the same time patients are reassured (orally) that complications happen only a tiny, tiny percent of the time and to go ahead with confidence.
I agree wholeheartedly that you should tell people about the unsuccessful and the complications. People have a right to know and to weigh the risks against the possible limited benefits.
No one should go into this surgery (or any other) with inflated expectations.
I see you and IAM as progressive - willing to factor in both sides of the experience. It's unfortunate you will come across many that are a deterrent to that healthy process of dialog. The walls they build, I call that "denial." Whatever reality they believe in or fed themselves into, comfort them. I watched a promo video on CI last semester and my professor said this video shows only the positive success stories of CI. Fair and balanced? Not in this industry. People needs to know there are two sides of everything. As a future Rehab counselor, I need to know that.
I look forward to seeing your article. Hope it will be posted on the web. Meanwhile, here is an article I did awhile ago, Cochlear Implants - Reimplantation and Extrusion, that might be helpful with your research for the article.
Jamie Berke
Excellent post - and there should always be a listing of two sides, but as long as it is not OVER-DRAMATIC. I also have a CI - and I have encountered people who have had success and failures (I wouldn't necessarily call them failures but I think their expectations were too high so they considered them failures). But keep up the good work - I am definitely interested in your article!
Stick to your guns, Karen. Parents and kids have the right to know both sides of the issue!
one issue I will agree with Mishka on ! It's no good seeking out the negative this isn't showing anyone a balanced viewpoint. There are pros and cons let's see them, or it might just be viewed as another 'rant' by the signing community again.
I've read loads of CI views, and have deaf friends who don't find any issue with them. I also have read 'Deaf' views pronouncing CI's give you meningitis with little basis in any proof.
I took offence at one UK blog that delieberately sought out an example of a CI user with menigitis to spoil an other wise heartening eport of the success of them,it was bias and uneccesary.
Call me fickle, I prefer reporting to be neutral. A recent news report stated AFTER a child contracted menigitis and went DEAF (!) as a result, a CI has helped that child 'hear' again.
If it is a 'numbers' game then CI's have already proven their worth, and so far show they are no more dangerous than any other implant. There ARE risks, but there are with any operation.
I have a child who so far has a successful Ci. Granted, he's only had it for 4 months, so who knows if it will always work for him. This article you're working on is important for parents like me because we need the reality check, hey, someday it might actually not work, then what are you going to do?
That aside, I'm so excited to see my little boy progress with his signing. He's not speaking yet, but his signing is blossoming and I'm so grateful for that.
Keep up the good work and balanced look at cochlear implants. Clearly it's a niche that so far has not been fully explored!
-Hather
As President of West Suburban Association of the Deaf (www.wsadeaf.org) and Legislative Chair of Illinois Association of the Deaf(www.iadeaf.org) and Deaf Commissioner of Illinois Deaf and Hard of Hearing Commssion (www.idhhc.state.il.us), very involved with advocacy, I loved visiting Karen's blog. I have encouraged many people to visit her blog. I even nominated her to DEAFREAD for best blog. Naturally I was disappointed that her name didn't make it up there. I, Dennis Patrick O'Brien Jr, fully endorsed Karen Putz's blog. I know Karen personally that she would report pros and cons on ALL issues regardless. If anyone is going to drag Karen's name thru mud, you are best advised to go thru me first. Smile.. You can reach me at PRESIDENT@WSADEAF.ORG.
Way to go Karen!!!!
Keep reporting as you see fit..
Your biggest fan...
Dennis O'Brien Jr.
Thanks Jamie, I will check out your article.
Aww, Dennis that was nice. :)
The reason I asked you to contact me is cuz you don't have a contact e mail in your blog.
No time to say what I want to say in response to your post but "damn the torpedoes, full speed ahead" and all that. I, like you, am heading for a Cochlear Implant myself one of these days and one of the things I most appreciate is being able to read about the other side of things. Not just the ones that work. I do believe I'm smart enough to know that not every single implant is going to "turn out just fine".
Thank you for taking on a daunting task.
I taught enough deaf students with CIs to know that life with that special technology can be great, good, okay, and all the way to just plain horrible. The only people who can tell that story, are those who have experienced it. Personally, I think we have done our children a great disservice in giving all of these children the "magic" CI, more often than not underserving them in support services and treating them as "hearing" thus robbing them of the opportunity to have an identity as a truly deaf person.
(It always bothered me when successful CI using children had a technical breakdown. They were ill prepared to be deaf. They never developed any kind of deaf identity. CI don't make "fix" you and make you "hearing", they allow you to use the auditory channel with technology to access sounds, and hopefully process language.
It was always a little disturbing to me to see parents and professionals so adament that children be educated a certain way, usually in an Auditory/Oral setting, when it was clearly obvious that that was either not their learning style, or the technology, either in isolation or in addition to other learning issues, was not providing them enough information to let them florish either academically or socially.
I would say if you want fodder, do some research within some of the alumni groups of Oral schools and see if people will tell you their story.
Good Luck. I am looking forward to seeing your outcome.
Here are two sites I, as someone with a disability have found useful.
http://www.assistivelivingmobility.com/
http://www.workingforindependencetogether.org/
Millie
Hi Karen,
As a fellow blogger and journalist on hearing related issues, I want to commend you on a great blog.
As a cochlear implant user, a parent of a child with one and also the leader of the HearingExchange community, I think I understand why there's such an uproar over your proposed article. People get nervous when they hear that someone is interested in hearing only the "negatives" about cochlear implants. The cochlear implant debate has taken its toll on everyone, especially the online community. Perhaps if they understood that you are writing a neutral article, one that is neither "for" or "against" cochlear implantation but simply an article that profiles some of the benefits as well as some of the problems, it would be better received. It is also important to report fairly and explain that while there are people who have problems with their cochlear implants, they are greatly outnumbered by the people who are successfully using theirs. Obviously, "success" has different definitions for different people and that should be discussed as well.
I think people should know that cochlear implants are not for everyone and that there are people who experience failures and also people who are not as successful with their implants as others. Cochlear implant audiologists are trained to give this kind of disclosure to prospective candidates, but an article which really spells it out can be very valuable as well.
Looking forward to reading it when you write it! I've subscribed to your feed and hope you will subscribe to mine as well at http://www.hearingexchange.com/blogs
Karen, even though I am the parent of a child with a cochlear implant who is doing extremely well, I do think it is important to educate people on ALL aspects of this technology, whether it is good or bad. Good luck.
Karen, even though I am the parent of a child with a cochlear implant who is doing extremely well, I do think it is important to educate people on ALL aspects of this technology, whether it is good or bad. Good luck.
Karen,
Thanks for your comment on our blog. I'm glad you came across it--and I'm glad, in return, that I came across yours! Thanks for sharing our blogsite with others. We love getting the word out there and sharing our journey with others.
That's interesting that you've worked with another family with a daughter who has CHARGE. Do they belong to the CHARGE listserv? It's a great community--lots of participation and sharing of information. I've been a member for several years now and have made lots of friends. It's a daily lifesaver for me. I see you are from Illinois. Do you know Michele Westmaas, who has a daughter with CHARGE? She is a big advocate in the state and does a lot of presentations on CHARGE.
I'd love to be interviewed for your CI story. Our daughter has had a CI for almost 4 years now with very slow progress. You can email me at lakcharge@gmail.com.
Leslie Kauffman
Mason, OH
hi, to anyone who can help
im working in childcare and am caring for a child with a ci. Right now he is 3 and half years old and has been completly deaf since he was born. he has had the ci for over a year now and there doesnt seem to be any improvment in his hearing at all as yet. i dont know much about ci and would like to know how much if any will his hearing improve and if so when should we start to see some response to loud noises?
thanks to any one who can help
Sheila,
There could be a couple of factors in play here. I would encourage the family to seek a second opinion from another implant center if there's any question about whether the implant is working. I have worked with several families who have gone to different providers and discovered what is called "soft failures". The implant may need to be re-mapped, electrodes adjusted or therapy adjusted. Some families have opted for re-implantation and gotten better results with a new implant. In some cases, the auditory nerve does not work and cannot benefit from an implant.
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