I hadn’t planned to write about it, but I feel like I can’t be silent (pun may be intended, but my subconscious isn’t telling me) about this issue.
Before I dive into what I hope will be a short post, let me preface this with a statement: I am not against cochlear implants.
In fact, I have one, though the processor has been broken for a decade and I have yet to replace it. I may one day. I haven’t decided if it would be worth the hassle, even though it worked extremely well for me. So well, indeed, that I could use the phone to communicate with some people.
But this post isn’t really about me using my cochlear implant, though I will draw on that experience.
This post is for parents of deaf children who have cochlear implants.
I am not judging your choice to get your child implanted. I understand why that choice is made. I’m not going to get into the debate over whether kids should get cochlear implants at all, because I have extremely mixed feelings about this.
The reason I am writing about cochlear implants is that I have seen too many instances over the years of parents being convinced that getting the cochlear implant was “the answer.” As in, the complete “answer” to whatever they want to call the fact that their children are deaf.
These parents, who absolutely do mean well, usually do not have an accurate picture of their implanted children’s actual ability to understand what they are hearing. They think: my child has a cochlear implant, so she understands speech now.
Or some version of that. They think the kids no longer need to rely on ASL, as if relying on it were a bad thing. Sometimes I even see parents that are already fluent in ASL choosing to stop using ASL with their implanted kids. As if that’s the way these kids are going to understand even more.
It doesn’t work that way. It really doesn’t. I know there are exceptions, but this is a sink-or-swim approach. You are throwing your kids into the water and expecting them to learn to swim well.
Look, maybe YOUR kid is one of the few that understand speech very well without the added support of ASL. What if he or she isn’t? We are sometimes excellent, and I mean EXCELLENT, at faking our ability to understand a hearing person. Especially when we think the hearing person’s going to be frustrated if we do not understand.
I write all this as someone who really can get a lot of benefit with my cochlear implant. When it works, I understand quite a bit, especially if I can lip-read someone. With one, I function like a hard of hearing person. Without it, I am as deaf as anyone else is.
But it’s like this, at least for me:
- NO ASL, just the CI use over the phone: I’ll understand about 25%
- NO ASL, just the CI in person and no lipreading: I’ll understand about 33%
- CI in person with some lipreading: I’ll understand 80% (and I am an excellent lipreader)
- CI in person with no lipreading, but ASL: I’ll understand 100% because of the ASL, and the CI’s gonna give me an added layer of sensory input that I don’t actually need, but may appreciate.
- ASL only: I’ll understand 100%
I understand this is me, it’s not everyone. But I am asking you, on behalf of your kids, to take the time and really assess your child’s actual ability to understand what is being communicated. Figure out exactly how much is being understood with the CI alone and with added support like ASL.
If you’re not sure or you’re not able to assess this, then find a professional who can. And watch out for those tricks we have up our sleeves. I used to press the button in the soundproof room at my audiologist’s office every time she looked at me, not when I heard anything. Don’t you think that’s going to skew the results?
In the end, what is important is communication. In my view, it should be 100% on average. If this means you’ve got a kid with a cochlear implant that you also always sign ASL to AND you give them added support with lipreading if they want or need that, so be it.
Related Post: The Tightrope Across The Chasm
I’ve just released a new book! It’s called The Rabbit List: Getting Control of Rascally Habits. Check it out!
Subscribe and get Chapter One of THE GOBLIN ROAD for free!
Join my mailing list to receive the latest posts!
39 replies on “The Cochlear Implant isn’t always what you think it is”
To anyone who might have commented in the last two days: I’m sorry, but it seems the comments feature was not working correctly. I did not receive any comments. So if you commented recently and did not see it appear, that’s why. Generally I will approve comments as long as the comments are civil. 🙂
I have try to contact you two days ago through the Facbook,
Is coahlear safe?What is average cost? I wear bone conducting body hearing aid,Fidelity,f-364.
I’m not a doctor, nor an expert in costs, etc. I think it is usually safe, but there are stories of complications arising from meningitis. I have no idea if that has been resolved. If I were you, I’d contact my local deaf services agency and make an appointment with them. Tell them you want help researching this and they can sit with you and do some research. They should be unbiased.
I like the title of this article for a number of reasons; some of which you touched on but mainly because a cochlear implant doesn’t do what most people are lead to believe it will do. I don’t have a cochlear implant, but I know a lot of people who do. If and when I qualify I’ll likely take the plunge, that’s when I’ll know for sure just what a cochlear implant will do.
If you decide to go for one, I truly hope it works well! There are plenty of things I enjoyed about having it, when mine worked. It’s just not the same for everyone. I used to listen to music. In fact, I love music. And I would listen all the time, memorizing songs. I miss that. But the truth is, most people I know with CIs tell me they can’t appreciate music. It doesn’t sound pleasant to them.
My suggestion is to come up with a list of precise questions and ask all your friends who have the CI. Ask about pain, discomfort, how it works with speech, etc. Make a note of which brand of CI they got. If you decide to go ahead, you’ll be more prepared.
Us from the UK value and respect your article – especially when there is an ‘over-CI’ing’ of very young deaf children and adults without recourse to trying out the very best hearing aids + gadgets available outside the NHS’s range.
Thank you – your post is being read in us UK Facebook pages.
You’re so right about the excessive use of implantation. It shouldn’t be done to the degree that it has been done. They tend to push it too hard. I feel that part of the problem is that it’s financially beneficial to medical providers to do this surgery. If money was taken out of the picture, then maybe the CI would be prescribed more wisely. I am not out to have the CI eliminated. There are definitely kids and adults who benefit, but we can’t just slap them in everyone.
Thanks for the wonderful insight of CI. I believe this is a wonderful tool for the parents of deaf child/ren. If only some parents take the time to listen, read, or do the research. Once again, thank you!
Thanks for your kind words! Yes, I do wish more parents took the time to read enough to get a clearer picture, instead of relying on the opinion of those who promote the CI without giving both sides. There were things I was not told before I got my CI, and there were some absolute moments of dishonesty.
As an SLP I’ve seen over implantation even to the point of implanting kids with a very poor prognosis to master competent communication skills. . .not because of the hearing impairment but because of other medical problems!! That’s a medical ethics question as far as I’m concerned!
Makes me wonder if it’s different in countries where there’s no financial incentive to implant the kids. If no one financially benefits except the companies that make them, are they less recommended?
My son absolutely loves his cochlear implant. Within a month of his surgery, he no longer needed speech therapy. He is thriving. I’m sure it’s not the case for everyone, but I don’t know of many if any that are dissatisfied with their implant. I wish you had had a better experience..
It’s not about dissatisfaction at all. I’m glad it is working out for him. There’s plenty I enjoyed, such as listening to music or being able to have a conversation with someone that doesn’t sign, and being able to understand enough. Not all, but enough.
We can enjoy it. We can even sometimes develop skilled speech. However, that doesn’t automatically mean that we understand 100% of what is said. If your son understands 100% of what is said with the CI on, then that’s great. I still encourage the use of ASL. What will happen during times the CI is broken? Mine has been broken for a decade, and replacing it is a pain in the neck and expensive. What will happen when he is an adult and no longer on your insurance? Will his cover it? What will happen when he is a Senior Citizen and the CI may no longer work for him? Will he have a communication mode to rely on other than hearing? My article isn’t intended to criticize the CI, or to turn people off of the CI, but to start thinking about getting communication to 100% and keeping it there.
Thanks for commenting!
Teaching a child ASL allows them to be bilingual. This way they can communicate with hearing and Deaf people. People with CI are Deaf people wearing a device and might want to able to communicate with other deaf people. Not teaching these children ASL is like people adopting a child from China and telling them nothing about their people or culture.
I agree. I also do advocate for the kids to have equal fluency in English. Not at the expense of ASL, of course. It would also be problematic to adopt a child from another country and get the child fluent only in their country’s native language. Kids in other countries are often bilingual, and truly bilingual. There’s no reason we can’t master both ASL and English if we have that at an early age.
Thank you for sharing your thoughts on the CI. I come from a Deaf family. When people ask me about the CI I always strongly state that I AM biased against it. If they still ask, I do share my opinion but emphasize that they need to do their own research.
From my very limited experience with CIs I have seen both great success and great failure. The success was an adult male, who put in the hours/months of therapy to make it work. It is still a great benefit to him, he also continues to sign. The failure was in a child. The family/others did not put in the work needed until years later. Then it was found that the child had other issues that were known but ignored in the rush to implant this “miracle”. The child did not benefit from the device. Signs freed him to communicate and reduced his frustrations but to a limited degree.
Another case of people thinking the ability to hear meant the ability to understand what is heard. I used to tell people that trying to understand spoken English without the benefit of lipreading or ASL was like trying to understand someone speaking French to me with some simple English mixed in. I’d catch the simple stuff, but not the rest.
I don’t think there will be an end to things like the CI. Something else will come along that works better than the CI. So in my opinion, what is needed is a way to require parents and teachers to have that 100% communication and let the CI or whatever, IF it is used (which I am not promoting) to only be an assistive device. Not the answer. Just an added support, if they choose to get it.
I still hope that the docs explain to parents how limiting it can be for sports, especially any contact sports. From what I have read and heard those with CIs are supposed to avoid contact sports to prevent potential injury to themselves and damaging the implant. That little fact is not always shared or comprehended in the process of getting an implant. Sometimes because the information/event is so overwhelming and sadly sometimes because it is considered unimportant is what I have heard.
That’s nice, but we absolutely DO have ways of knowing how much children are understanding with their CIs. My daughter understands around 90% in sentences, with listening alone. That is completely typical for a child, implanted in childhood, and given good rehab services.
I’m glad it’s that successful for you, but the point of my writing the article is that this isn’t always the case and so many parents assume that it’s higher than it is. You sound confident, so you’re probably right about your own child. However, not all kids are implanted early, and not all kids get good rehab services. Some do, some don’t. Parents need to know how communication is for their kids. Your being one of the parents that is motivated enough to know doesn’t mean most parents are doing the same. In my experience, they are not. More parents than not, in my experience, are getting the CI implanted for their kids and then that’s most of the story. Perhaps they do some rehab, perhaps they don’t.
I’m glad you’re making sure it was worthwhile. I’d still recommend, if you don’t already know it, learning ASL to fill in the other 10%. Why not go for full comprehension if you can, even if that exceeds the normal?
Thanks for commenting.
Having an interpreter in school wouldn’t add to the 90%, it would likely, instead, lower the percentage because she was splitting her focus. And while I can say this about my own child, I can also say it about the children I work with as a teacher of the deaf. We absolutely can and do know how well a child is understanding spoken language with their devices, it is easily measurable.
Hi J. Parrish…. thank you so much for your personal thoughts and insights on this ever so controversial subject. I think your approach to discussing the issue is open and honest. I have seen both the positive and negative effects of CI’s in children and adults. For those who experience success in their implantations, that is great. Sadly, it is the majority of the “CI” failures whom I’ve dealt with in a wide variety of educational settings. The implantation of these devices is not an automatic fix, it requires hours, weeks, months, and years of intensive auditory training, speech therapy, and supplemental educational resources. At what point does a d/Deaf child get to be a d/Deaf child? When do they have their right to their natural visual language? They are still d/Deaf once the implant device is removed from their head. With American Sign Language they have complete visual access to language. Having full access to visual language gives a d/Deaf person an equal playing field to education, socialization, and acceptance. Thank you so much for your posts!
Do you think for a moment that parents who are too lazy to do proper rehab for their children with CIs will bother to learn ASL?
Sure. I don’t think it’s always laziness. Sometimes it’s just more comfortable to have someone teach them ASL than to go to a clinical setting. It’s something I have witnessed, actually.
Really? It is easier to learn an entire new language, change the way you communicate, all day every day, so your child has access to ASL, rather than have an early interventionist come into your home twice a month?
Didn’t say it was easier. Just more comfortable for some.
Thank you for your article it’s very insightful. I am a parent of a deaf child currently 7 months and a bilateral implant candidate at 1 year due to profound R ear and severe L ear. My son is the first in our family to be deaf and to hearing parents/ family it is a big deal initially, until it’s not… Because of other means of communication including technology options, ASL, CIs, HAs, etc. I’m curious about your story in hopes to make the best decision for my son. How old were you when you were implanted? What were your parents choices with communication? Oral deaf, strictly ASL? Were you born into a Deaf family, or was your family hearing? My questions arise because the research shows you will always be partial to the first language you learn. With that research and clear results we have currently chosen listening and spoken language for my son with no ASL until past language development years. We are a hearing family and we would like for him to be a part of our culture if possible. Our point in not including ASL is to provide our son with the opportunity to adapt naturally at his young age to what he has (hearing aids currently, implants at 1) and typically children excel in what they are provided. The research shows if provided both initially (ASL and speaking/verbal) the child will typically pick the easiest for them (typically ASL) or not reach peak performance in either and communicate in both ways, ASL and through speaking. We have made a drastic decision in our choices for communication for him which I am aware. However for me it makes sense that to truly give the implants a try there has to be no other means, because it will not be easy to adapt to the CIs. It’s going to be extremely challenging for him requiring countless therapy hours. With this is why we are not going to give him an option with ASL unless problems arise with implants because our brains pick the easiest way to communicate without a conscious decision. I am for communication in general. However a family chooses to do that so be it. I just want to be clear I’m not attempting to say that ASL is wrong. It very well may be the language I end up learning to communicate with my son. I just felt the need to reach out to understand your position more for your “negative” or not meeting expectations with the CIs, and to explain the reasoning behind the drastic communication decisions parents make.
I understand your reasons. Even though I don’t agree with the idea that it requires that no other means are available, I do respect that you’ve clearly given a lot of thought to this issue. I do hope that it works out for you. I know that there are always exceptions. There are successes and failures in deaf education and there are successes and failures with the CI.
As for me, the short version: born hearing, became profoundly deaf at 2 and a half, approximately, Oral/lipreading method until 3rd grade, then SEE until college, then ASL. So ASL is my last language, not my first. As for the CI, I got it at 17 and it was very successful, as I mentioned in the article. It’s just never going to be 100%.
My parents don’t sign. I lipread what I can. It requires a lot of repetition.
Even though my CI worked well, if I could do it all over, I wish I hadn’t gotten the CI. And I wish that I had learned ASL at a younger age. No regrets about English, though.
Kate, can you share the research to which you are referring? My experience with my son has been just the opposite. He has severe to profound hearing loss, and was given both ASL and English early on. He has chosen a speaking/listening preference over ASL. Perhaps not the norm. I would be interested in reading those articles myself.
Thanks for your article. I found the best part of the article when you gave numbers about how well you could understand an English speaker in various settings.
I am sorry to hear about the abuses of too much CI implantations occurring. Hopefully something can be done to reduce these abuses.
Why do you now wish that you hadn’t gotten your CI? Have you explained why anywhere else on your blog? I would be very interested to know your reasons.
I am deaf and bilingual in both ASL and English. I have been researching the possibility of getting CIs for some time.
It is my understanding that a person who is bilateral (with 2 CIs) in a quiet room gets 80% comprehension and in a noisy environment gets 60% comprehension, but if someone only has one CI, that person will get 60% comprehension in a quiet environment and 40% comprehension in a noisy environment. For the portion of this statement regarding those who have just one CI, do these percentages ring true for you?
What that means is that even with 2 CIs, in all environments the bilateral person will still miss out on a significant portion of what is said. Even missing out on 20% of the conversation (if the person has 2 CIs and is in a quiet environment) is significant. It will still not change the fact that there will continue to be settings where the person will feel like they are on the outside looking through a window and not really feel part of the social group. CIs will hopefully reduce but will not totally eliminate such experiences from occurring.
All deaf U.S. children should have access to at least both English and ASL from their earliest years, regardless of whether they get CIs or not. They should have the experience of both 100% full and also effortless access to a language, which even with the latest CI technology that currently exists, and even with the most intensive auditory therapy, won’t happen with CIs and therefore can only happen with sign languages. They should not have to go through the experience of feeling like they are always struggling for both full and easy access during their childhood, both of which is exactly what will happen if they have CIs and no ASL. No child should ever have to go through that. CIs will never help a child become 100% a hearing person, the child will only move from deaf to hard of hearing status.
Here is research that addresses how deaf children with CIs and no sign language are harmed: http://tinyurl.com/h6fpnmp
There are also benefits for growing up bilingual. Quoting from another article, “Bilingual children display better mental flexibility and cognitive control as well as more creative thinking, especially in problem solving. These benefits extend to social and academic settings” (http://tinyurl.com/pm2j8pp).
(I was also impressed by a family in the second article who decided the whole family would learn ASL, for those times when the deaf child wasn’t wearing CIs or when there was too much background noise for the child’s CIs to work well.)
I hope these citations will be helpful to at least some readers.
Thanks for those numbers and the thoughtful response!
I may write more details about why I wish, sometimes, that I never got the CI. For now, the condensed version is: I feel I was tricked into getting it because I was told any future processors would work with my implant, which is less and less true. So eventually I don’t think it will even be an option to use it. I also really grew to love music more when I used it, and there are many times I miss listening to music. I don’t think I would feel that way if I hadn’t gotten the CI.
It’s tough at times, but it can’t be undone. I could get it removed, but I don’t want surgery again, and I will never have the option of using a hearing aid with that ear again, which to me is frustrating. I’d like that option back.
You’re very welcome.
Even if you were willing to have surgery again, it would not be normally approved anyway. That would be approved only if there was any issue with that part of the CIs, if it was defective. It’s only the outside part, the processor, that I have been told is normally upgraded every 5-7 years for free by your health insurance.
It seems strange you would want to go back to hearing aids after having experienced CIs, because CIs encompass a much larger area of the audiogram than hearing aids ever will. For example, the part of the audiogram that covers the finer sounds associated with speech, only CIs are able to detect the sounds from that region.
All CIs are brand specific. Once you go with any brand for either ear, you cannot switch brands for that ear again. For at least that particular issue, I have never felt misled by that issue. So, are you saying that once upon a time any processor brand could be used with any CI brand? To my knowledge, there have never been any universal CIs or universal processors, but I could be wrong.
I have been looking at CIs only for the reason of getting better access to speech, even if that access is only partial. I have not heard anything positive about using CIs for accessing music. Your comment about growing to love listening to music is the first time I have heard anything relating to that issue that was positive. That may be true only for those born deaf, because there is no memory of listening to music before CIs to compare with. Deafened people who get CIs say the experience of music with CIs does not compare well, so their previous memories of how they remember music seems to get in the way for those folks.
When I got the CI, it was Cochlear brand, and I was told that any future Cochlear processors would work with that implant and that I would never need a different implant. No mention of other companies. When the CI processor broke for the second time, I was told that my implant would not work with all the new processors, only the Nucleus Freedom and some older refurbished ones. It’s my prediction that eventually the implant I have won’t be compatible with any of the latest processors and that they will say I need a new implant to use them.
It sounds as if the confusion you had might have been due to the fact that (1) the sole company approved in the U.S. at one time was Cochlear, and also due to (2) the perhaps unfortunate name of that company, Cochlear Corp., as well, because you never know when someone says “cochlear” if they’re referring to the cochlear implant, or to Cochlear. So if they said any future Cochlear processors would work with that implant, they may have been referring to the company, in which case they were telling you the truth and not necessarily trying to mislead you.
The only CIs normally available to any of us in the U.S. are those CIs sold by companies that are approved for sale in this country. There’s usually no point in speaking of CIs that are not approved for sale in this country. That’s not necessarily being misleading, just reality for most people in the U.S.
And possibly, perhaps by the time your CI broke a second time, Advanced Bionics was now up and running, and therefore they had to further clarify that it wouldn’t work with all CIs. To my knowledge, for the U.S., Cochlear was here first, then later Advanced Bionics came along, and then later MED EL came along.
Also, CI processors are constantly being upgraded by all three of the CI companies in the U.S. And, the same processor that just comes out does not necessarily work as a replacement for all previous processors sold by that company, only for some of those previous processors. I saw that happen recently for Cochlear. So, it’s possible a more up to date processor was simply not available at least just yet for your particular model. None of them normally require the part inside your head to be replaced (except of course in emergencies), only the processor (outside) part. When processors are upgraded, there is no need to upgrade the inside part, because room for upgrades is built into the technology ahead of time. For example, the inside part is not fully used by any processor, because only part of it actually needs to be used. That provides room for future technological improvements. I could be wrong, but so far I have never heard of the inside portion ever needing to be replaced simply because a new processor became available.
Incidentally, how did your processor break both times? How many years were you wearing the CI before it broke the first time, and before it broke the second time? One day it simply stopped working, or you accidentally dropped it, or it accidentally got wet, or what? Also, how many years did you wear your CI altogether, before you completely stopped using your CI a decade ago? I don’t know if your answer here will actually provide me with any useful information, but thought I’d ask anyway just in case it does.
And by the way, thanks for your replies so far! 🙂
I was aware of other companies, but they said every processor that Cochlear corporation made from that point on would always work with my implant. I didn’t try for other companies. When it broke, I contacted the same company that made my implant, and only some of the implants were compatible. Then less over time. I’m not sure about now, because I haven’t checked in the last year or two.
Both times broke due to moisture damage. I lived in a really foggy area and I think that was a big part of it. I used the CI for about 7 years altogether.
I know hearing aids aren’t as effective, but they’re sure a lot less complicated. 🙂
I appreciate your views, but can’t agree with them completely. I have one CI and will be going bilateral in May. To deny a child the chance at the hearing level a CI can potentially provide would be unfair. I agree that expectations should be realistic and good therapy practices followed, never a “sink or swim” approach. Perhaps the key is to be sure your are dealing with a highly skilled and ethical surgeon. I can’t speak as someone who heard their first sounds through a CI, but I can tell you this; when my CI was activated after years of going deaf, it was like a quasi religious experience for this former musician. I heard people talking outside of the room and people moving about before my audiologist said a word to me. It has been steady improvement since, I would want that for my child if it were necessary and possible. A good audiologist and patient parents would also be a requirement.
Thanks for a very well-written post. I always appreciate hearing everyone’s opinions. I am also glad that you stressed the importance of continuing to learn and use ASL.
My wife and I are both hearing people, but our oldest daughter was born with profound hearing loss. ASL was her first language, and it quickly became a second language for me and my wife. We use it every day and can’t imagine our lives. We certainly would not have met some amazing people had we not chosen to make ASL a priority.
We still chose to have our daughter implanted with CIs at age one and one-and-a-half. It was not an easy decision, as it involves invasive surgery, but since I’m a musician, my daughter would inevitably ask why she wasn’t given the opportunity to experience music like I do. Luckily, my daughter’s implants have worked well for her and she is even showing an interest in guitar and piano.
Lastly, I can’t stress enough how important her teachers at Northern Voices Preschool have been (www.northernvoices.org) They have taught her to use them and how listen and speak. Her CIs are only one part of her overall “communications arsenal.”
She loves her CIs, and she loves ASL. I wouldn’t have it any other way.
Chris, this is fantastic. I’m really glad you included ASL and made it a priority. As I’ve often said, I’m not inherently opposed to the CI. I’ve probably got another post to write one day about the complicated feelings. 🙂
I was researching information about CIs when I came across your blog. I was born with severe to profound hearing loss. I was sent to deaf oral school, loved being educated there, and had only one hearing aid to work with. I did lipreading a lot and interacted with both DHH and hearing people. Later, I was sent to hearing school in 5th grade. I did well in hearing high school. However the high school was crowded, and it was hard for me hearing loss wise, so my parents decided to have me tutored in ASL during my senior year. I went to Gally to learn about DHH culture, and then later to CSUN. My first language is actually written English, not oral or ASL. Now, my residual hearing faded out completely last year, and now I am totally deaf. I am scheduled for a CI next month, left ear only. I loved hearing aids, but I don’t feel they will work for me anymore. I think CIs have made great advances in the last few years. I would like to point out something you may not have considered. Suppose you develop eyesight problems? To the extent you have difficulty seeing ASL signs later on? My grandfather was blind in one eye, and I wonder if I won’t have sight problems later on too. I would think the restored CI would be sort of a backup for you. As you say, it worked well for you. I am not convinced that the CI is completely useless for you now. I would go back to Cochlear and get an new assessment, including costs. If you still don’t want to do it after the assessment, and keep it broken, it’s your choice. ASL isn’t for everyone, neither is lipreading/oralism or whatever. Neither is a CI or a hearing aid. It’s whatever works best for that DHH person. One more thing. Since I lost my hearing completely, my tinnitus has really kicked up bad. So hopefully the CI may eliminate, or reduce it. OK. I realize you have complicated feelings…that is what is SO fascinating about the DHH world. I love interacting with all DHH people wherever they are, and wherever they are going. I respect your feelings. You are not wrong with how you feel. Thanks for sharing your thoughts.