Unless you live under a rock, you have probably seen at least one You Tube video showing a cute little toddler sitting on his mother’s lap while the Mom says the child’s name and an audiologist flips some magic switch turning on the child’s cochlear implant. The child’s face becomes very alert. His eyes dash around to figure out what he is hearing and everyone claps and smiles. People cry. It’s very moving. Voila, the child can hear. It’s magic.
Only it’s not.
It’s not the least bit magical.
Nor is it as simple as it seems.
Ever since we found out the baby is profoundly Deaf, well-meaning family and friends have asked us if we are going to “get” a cochlear implant. When I tell them that we would not even consider it, people actually act offended. Some people have even made comments that make it sound like we are some how abusing him by not getting this miracle hearing device. Like we are denying him some type of normal life.
In most cases, I just smile and let them know that he has hearing aids and that our primary focus is learning American Sign Language. If I am pushed a little more, I might explain that we don’t consider the implant an option for our family. I don’t normally leave the door open for more conversation because if I did, I might just say something offensive.
Now, I understand that most people watching those seemingly miraculous videos will view the Cochlear Implant as a cure. A device that takes this poor little deaf child and suddenly makes him hear normally. Unfortunately this is just not the truth and the process of getting a getting a cochlear implant is anything but easy and neither is learning to use one. I am certain if the YouTube videos showed the entire cochlear implant process it would not seem so innocuous.
Let me give you a few details:
First the child will have to receive at least one (probably 2-3) MRI’s which will need general anesthesia since babies and toddlers don’t really stay still for 30 minutes. Some doctors will also require a CT scan, exposing them to both unnecessary radiation and another dose of anesthesia. I am not sure about you but I work hard to make sure that I am exposing my child to as little toxins as possible. I can’t imagine checking into the outpatient on multiple occasions just to see if he is a candidate for the implant. Not to mention all the risks involved with general anesthesia. There will also be other less serious interventions like blood work, IV’s, EKG, EEG, etc.
Once they are identified as a candidate for implantation the surgery will be scheduled. Surgery for children will take 3-4 hours under general anesthesia. During the surgery a 3-5 inch cut is made behind the ear and the skin is pulled back exposing the child’s skull. Then a tool is used to remove part of the the skull bone. This is called a mastoidectomy. A small wire is then placed into the cochlear. Permanently destroying the cochlea. The bone is replaced and a magnet is secured to the exterior of the skull. The skin is folded back down and stapled into place. The magnet is about one inch in diameter and will actually look like flattened disc on the child’s head.
There is a two week healing process before the child returns for their first mapping sessions. Once the implant is turned on, the child will take part in regular mapping sessions, speech therapy sessions and other intensive types of treatments. They still have to learn to use it. It isn’t like normal hearing.
Does any of that information surprise you?
Cochlear Implant surgery is not for the faint of heart. It is a serious decision that has significant risks. I truly can’t imagine putting my child through such a procedure when he isn’t even sick.
When there is no medical necessity.
Furthermore, cochlear implants don’t come with any type of guarantee. There is no guarantee that your child will speak or even have improved hearing. CI’s do not fix the hearing loss and they do not let a child hear normally. It is still an artificially created noise. If the CI does not improve the child’s hearing, you are stuck because the other (less invasive) forms of amplification like hearing aids are no longer an option. You are also stuck with that level of technology. Meaning that once the surgery is done, if something better comes along, your ear is running 1.0.
So, here we are at 7 months. We are focusing on building a Bilingual/Bicultural home for our little guy. Our goal is to use all possible resources to help him become successful but the CI is not an option for my family. I want him to run and play, laugh and giggle and know that he is perfect just the way he was born. I don’t want him to spend his babyhood being poked and prodded to try to make him what the world sees as “more normal.”
I hope that this post gives you just a little insight about the truth behind cochlear implants. Feel free to ask me any questions. I am an open book.
I am so humbled and amazed by the traction that this post has gotten over the past 24 hours. In attempt to answer some of the comments and questions, I have written an Update & Response post. I do encourage you to take the time to read my newest post. Click HERE!
I am so glad you wrote this! And good for you!! We are still in the midst of audiologist appointments after our baby failed several hearing tests. We have voiced our concerns about it to some family members, who told us not to worry because of the advancements like CI. I think CIs are greatly misunderstood, unfortunately. They may work wonderfully for some, but I agree with you, it wouldn’t be something I would want my baby to endure.
Lacey,
Thank you. Yes, I whole-heartedly agree that it is a misunderstood procedure. I do understand why parents choose to have their children implanted, I just hope that they do their due dilligence. Also, if you have any questions or just want to talk about your LO, please send me an email = sunshinepraises AT gmail.com
My son is 25 years old and Deaf. When we found out he was deaf at 2 months of age, the doctor asked me about an experimental procedure for pre-lingually deaf children. At that time they were only implanting post-lingually deaf children. I said “NO WAY!” I wouldn’t even circumcise my son because it was unnecessary surgery. Why would I implant my son when it was unnecessary surgery?
Back then, I wouldn’t either. Today, the returns are a lot better than they were 25 years ago, though.
I’m trying to calm down before I send you this message…do you believe it is easy for parents to decide to put their child through this process???? It is not. It’s very difficult. But let me enlighten you a little bit. My son was born deaf. We only discovered this at the age of 18 months. He had his 1st cochlear implant and switch on just before his 2nd birthday. He had his second implant just before his 3rd birthday.
Let me tell you something – all the scans, MRI’s, surgeries, hours of therapy has been WORTH IT. We stopped therapy over a year ago (my son is turning 6 in Feb), he is in a main stream private school, he LOVES his “superman ears” (we’ve instilled a real sense of pride when it comes to his cochlears), he reads and writes, plays rugby and soccer, swims and rides his bike, his social live forces me to keep a diary…all his friends love him, and he says to me every night before he falls asleep that he is a happy boy.
Cochlear surgery is NOT brain surgery. My son was up and running around 4 hours after surgery. Each time. If it was truly brain surgery this would not have been possible. He also only had one dosis of pain medication afterwards. The next morning when the bandages were removed he giggled and told the surgeon:”that tickles”.
My suggestion is that you do a survey of cochlear implant parents and recipients before you make statements like this.
My little angel is very happy with his cochlears and we are very happy with the decisions we’ve made.
I use hearing aids, not CI, using its since the age of 2, and I am fine, my many CI users friends can’t hear some sounds, or identify distance, or difference between some similar sounds (clarity), some other stuff, so it’s not for everyone, even it’s worse than when they used hearing aids before. If it’s failed, they lose the money, and residual hearing for good.
you are lucky that your son got better results, which it’s not common as failed ones.
Oh yeah, there actual stat.
Sorry my grammar, still learning English, I mainly speak Spanish
From Agentina.
I was a transliterator for five years, which is a form of communication called cued speech. It uses one hand as the consonants and where you place your hand on your face are the vowel or vowel blends. Children who learn ASL or ESL can usually read up to a 3rd grade level and their speech and lip reading skills are not as good. However, with cued speech, children quickly pick up cuing right away. Cuing can be simply taught to the parents as well. Children may read at their own grade level and can even learn foreign languages because cued speech is completely phonetic.
I worked with children with and without choclear implants and the ones with them are soaring in the job markets. They went to college, are in careers I never expected they could handle, and the children without the choclear implants are just surviving at regular jobs. I’m not saying they aren’t happy, but their lives just might have turned out differently had they been given the opportunity to make the decision early on when insurance could have paid for it. I realize you are afraid of the MRI’s, CT scans, IV’s needles, the crying, I get that. I’m a mother too. But your son is at the right age that he won’t remember all of this. If you don’t try now, he may ask you one day why you didn’t have something done when you had the chance. I’m not trying to pressure you, I don’t even know you. I just saw the frustration in the faces of the kids when they couldn’t understand what people in the classroom were saying or wanted friends so badly, but was left out of activities because they could not hear when someone was calling their name on the ball field.
Have you ever thought maybe this mom wants to send her son to a SCHOOL for the DEAF where he would be able to SEE his name being called on the ball field, hmm. To my knowledge, there are many schools for the deaf that do as great as “mainstreaming” programs because they provide FULL access to everything, education, social emotional skills, and what not. If the mom choose a mainstreamed program, then it is the school’s responsibility to provide an interpreter so the boy will still see his name being called to the field.
How ignorant are you and condescending! I am a profoundly deaf woman with one hearing aid, with decibel loss in the 100’s.
Guess what!? I also speak English orally and sign in fluent BSL. I’m also understood by my hearing peers and have an actual accent so people always know where I come from.
My regular job as you put it…. Is a manager! Bet you’re keeling over in shock now. You should go away and put your outdated view in a blog that’s only read by yourself.
I refused CI as it was invasive and incredibly demeaning which is my personal choice. My other friends have CI’s which was their choice alone and I support them in that. I don’t agree with making babies have them! Let them choose at an age of responsibility.
Bravo yes yes I AM DEAF AND I WENT TO GALLAUDET IN DC ,, AND I CAN HEAR IN LOW PITCH VERY WELL BUT IN HIGH PITCH ZERO. SO I ASK GOD TO HEAL. I AM 62 YEARS OLD AND I LOVE WHAT I AM NOW .. I WAS WORKING WITH THE DEAF KIDS IN MAI STREAMING, DEAF SCHOOLS AND I GRADUATED IN A SCHOOL FOR THE DEAF I AM SO GRATEFUL FOR MY PARENTS PUT ME THERE AND I AM HERE TO TAKECARE OF MY DADDDY 89 YEARS OLD.. OOK. MY BROTHER IS HARD OF HEARING GREW UP IN PRIVATE SCHOOL IN CATHOLIC WHILE I GREW UP IN OTHER CITY 100 MILES AWAY FROM MYHOME .. IN SCHOOL FOR THE DEAF.. OK FOR MYBROTHER NE GREW UP WITH HIS HEARING AIDE AALLLL THE TIME. HE NOTICED THAT HIS HEARING GOT WORSE SO HE MADE HIS OWN DECISION THAT HE WANT TO HAVE CI LAST YEAR,, SO HE WAS 66 YEARS OLD TO MAKE HIS DECISION TO HAVE THIS.. OK I REF– USE IT BECA– USE I NOTICE THAT I CA HEAR MORE MORE NOW SO I RATHER LET GODTAKE CARE OF IT AND I AMVERY HAPPY WHO I AM I AM EXPERT WITH ASL SIGN LANGUAGE, AND I CAN SPEAK AND I CA HEAR WHEN TV IS ON .. SO PLEASE DONT DO THAT TO UR PERICOUS BOY THAT HE CANPLAY SPORTS.. AS U KNOW TNAT IF UPUT HIM CI KN HIM HE CANT PLAY SOME OF THESE VERY DANGEROUS .. I WAS SO SHOCKED AS I HAD TO WATCHED THE KIDS WHO HAD CI ON IT MSOME F THEM WERE SO MAD HATE THE CI .. SO ONE BOY WE TRIED TO TELL HIS PARENTS DONT DO THAT BUT HIS OLDEST BROTHER WAS FAVORED HIM AS HE DOESNT WANT TO HE WAS TENYEARS OLD ,, KNOW WHAT HE NEVER — USED THIS AT ALL IS THAT WORTH HUH.. NO NO SO PLEASE PLEASE DO NOT HAVE YOUR SON TTO HAVE CI.. JUST WAIT UNTIL MAYBE FKVE YEARS OLD THAT HE CA RESPONSIBLE WITH THE HEARING AIDE THAT WHAT I DID.. OK I SUGGEST U TO KNOW ASL SIGN LANGUAGE U WILL BESURPRISE HOW MUCH WORTH TO CKMMJNICATE WITHHIM.. I ONLY WISHED THAT MY FAMILY KNOW THE ASL NEVER AS I TOLD THEM NO NO I WANT TO TALK IT IS MY WRONG HAHAHA…. BUT MY MOM WAS VERY GOOD FINGERPELL WOW FAST .. THAT I CA READ OK .. BEST ASL LANGUAGE AND LEAVE YOUR SON TOHAVE ENJOY THE LIFE. SMILE I LOVE U AND JESUS LOVES U .. OK
Becky – that may be your limited view, but my husband who is deaf and wears hearing aids (NOT CI’s) has been a veterinarian since ’99. He successfully went through vet school (=medical school) for 4 years after completing his 4 years bachelors degree, with ASL interpreters. How can you say such nonsense that ASL holds people down and Cued Speech is the key to success? It is NOT. It is an individual thing.
What many people do not realize is that there is a lot of cherry-picking going on. When my son was in preschool, they put him into the oral pre-K program “to prepare them for mainstreamed Kindergarten” I refused and put my foot down because we use ASL in the home and I didn’t want my son coming home and only speaking and not knowing the signs for what he’d learned. So he stayed in the TC (total communication) classroom. As the year continued, I quickly realized that all the “smart” kids had been put into the oral classroom, while my son’s classmates were the ones who had multiple handicaps. So is their failure due to using ASL? NO!!! Their failure is due to other issues, one being lack of communication in the home. (Most were from non-English speaking homes as well.)
The “successful” ones are the ones whose families worked with them (in any mode – CS, TC, ASL, even oral) and communicate with them and teach them and reinforce what they learn in school.
My son is in a college prep school now and he is doing very well. The interpreter coordinator tells me of her frustrations that occur every year when it finally becomes obvious that a deaf student just isn’t making it, just isn’t getting what s/he needs and so they decide to add an ASL interpreter. By then the child is somewhere in 2nd to 6th grade and has forgotten any signs (if s/he ever knew any) from preschool and how in the world is the child supposed to understand what the teacher is saying through an interpreter when s/he does not even have sign language competency? Sad, so sad! If the child had had ASL consistently from preschool, Kindergarten and on (AND at home TOO!), then that child would be so so much better off! Not all of them would become doctors, it is true (not all hearing children become doctors either), but they would be so much better off! At least equal to some hearing children, instead of being way down at the bottom in special ed.
Sorry this is long, you touched a nerve here. ASL is GOOD! (I’m not saying Cued Speech is bad. But you imply that ASL is.)
Becky: there’s really no such thing as “ESL” other than English as a Second Language which has nothing to do with anything. Do you perhaps mean signed English, or one of the many created systems for visually representing English via signs such as Signing Exact English?
I’d say it’s time to catch up. Times have changed. The author isn’t speaking of any of this. He’s talking about raising his child in a bilingual environment.
Have you watched Cueing adults who can’t speak well? Most sign, or, well, they carry around pen and paper.
Cued speech is not language. How do chidren/adults learn any second language without having a native language? Children who are Deaf/hard of hearing have a natural right to learn a visual/spatial language: American Sign Language, or other native signed languages, depending on their country of origin. By relying on an artificial sign system, like cued speech, or Signed Exact English, children become isolated from others with hearing loss. They cannot communicate with those who can hear, and cannot even communicate with other children who are Deaf/hoh who use ASL. Children who communicate through ASL are, by law, provided with an interpreter in the classroom and at school functions for equal access to all communication happening around them.
“ESL” is also not a language. Research has shown that children who have a native language, ASL, learn English much more easily through a bi-lingual, bi-cultural approach to teaching. That’s learning to read and write English-at grade level for their age, using their native language, ASL, to instruct. There are thousands of successful adults who attend college, complete post graduate studies, excel at their careers, and communicate through ASL, with or without a CI. A CI does not guarantee success in education, the job market, or even in deciphering the artificial sounds generated by the device. As stated by the author of this article.
Lip reading is an incredibly difficult skill to learn, ever tried it? At best, unless subjected to years of tedium in speech therapy, a person can understand 30% of what is said through lip reading.
Using guilt, or scare tactics, like quoting statistics that are misrepresented, telling how isolated a child with hearing loss is at school, or saying that people without CIs are stuck in dead end jobs are not valid arguments. These parents are making the best decision for their family and their child by teaching him, and learning themselves, ASL. A language with a rich history, grammar-separate from English, it’s users have the ability to express concrete, abstract, literal, and/or figurative concepts to the same extent as any other language users. With this native language as a spring board, their son will be able succeed in learning a second language, English, and be as successful, and excel, as well as any other child.
It’s also fair to mention, most insurance companies will pay for the initial implantation, but if the device malfunctions or needs to be replaced it is unlikely they will pay for a second surgery. It’s not as cut and dry as some would like to make it. This is a seven month old baby, and his parents have made the decision that is best for him and their family. Kudos to them!! If he decides, as an adult, to have a CI, then it is his own informed decision, made on his terms, understanding all his options. If his parents made the decision to implant now, he may ask later, “Why wasn’t I good enough just the way I was born?”
Becky,
I don’t have CI and I am a pre-law student who works full time at a job I absolutely love and have already done an internship with an attorney. In addition to this, I am a published writer, have worked for an insurance company and have even had my claims adjusting license.
I speak English, Spanish and German as proficiently as I sign.
The only problems I ever have are with people who have your attitude and opinion. The only thing that holds a child back is audism. PERIOD.
Michelle–
Ironically, you are audist. Despite your claim that audism holds children back, your perceived limits of a deaf child’s potential is what holds them back. And your belief that a child who uses ASL as opposed to cued speech or a CI will be more successful in their lifetime, is disheartening and appalling.
My mistake. My comment was meant to be addressed to Becky, not Michelle.
Yes, it is attitudes such as hers that are the obstacles and barriers. I have Deaf friends (non-implanted) who have been presidents of colleges, neuropyscholinguist, several college professors (teaching hearing students who don’t sign; interpreter is there for the students), computer programmers, lawyers, published authors, 2 friends who have completed the Appalachian Trail Hike with a Deaf/Blind cohort, world travelers (traveling alone)……. the list just goes on.
Each and everyone of these individuals had one thing in common. They had parents who were behind them 100% and learned to communicate as best they could. They created every opportunity for learning they could.
The fact that Cued Speech programs have better reading levels on paper look good. The truth of the matter they hand-pick who they teach. Those they think will not be successful, the multi-disabled children, are sent to the schools for the deaf. So, when you compare reading levels you are not comparing the same cohort.
Cued Speech was not designed as a communication method. It was designed to teach lip-reading and speech. Its misappropriation as a communication method has left Deaf children without many to communicate with once they graduate from high school. They can’t communicate with the Deaf community because they can’t sign. (They might grow up and live in a Deaf ghetto. Yes, I actually heard this said.) More often than not, their speech is not good enough for your average hearing person to understand them. I have worked with many of these children. They are frustrated and lonely.
At NTID/RIT, they are given a transliterator for one semester. They are expected to learn sign language and utilize the extensive interpreting staff for all courses taken in the other colleges of RIT. This puts them at a disadvantage in college.
The job of any educational facility is to prepare the children for life after schooling. If some of your students can’t create a community for themselves due to communication issues. I deem that program to be a failure.
Now on to the cochlear implant issue. I have known adults who have chosen this path and has been happy with it. However, I have know failed cochlear implants. One, was a friend who was an ideal candidate. He had his hearing till one morning he woke up with a severe hearing loss in his late 30’s. He opted for the implant. It failed. He now does not have any other options; stone cold deaf and not even a hearing aid.
Another friend, hard-of-hearing and has a great ability to speak and function in both the hearing and Deaf worlds. Their hearing aids gave out. Health insurance does not cover the costs of hearing aids; digital hearing aids about $6,000. They could not afford aids. However, medical insurance WILL pay $98,000 per ear for cochlear implants. So, implants it was.
During the mapping process, a glitch, an electrical shock to the brain and balance system out of whack. All for the desire to hear and the inability to afford aids.
Are you aware that the cochlear industry has the law on their side? They cannot be sued if the implant does not work.
I think the risks are too high and with even a remote chance that all hearing will be lost and the implant a failure, my decision would be a resounding no.
My kudos to this mother for doing her due diligence for her son. He will be a grand success.
Cynthia
Thank You Cynthia for your thoughtful and concise comments.
I don’t have a CI, didn’t grew up cueing, didn’t grow up oral, and I have a master’s degree in literature (specializing in Shakespeare Studies) and work in the journalism profession.
I had no clue I read at a third-grade level. Oh, wait, that’s what the doctors told my parents back in 1984. I guess if they said it and you say it, it must be correct.
Thank you very much for your pigeonholing.
I don’t blame you for not wanting to do the procedure. The MRI in itself is scary, let alone the surgery. Goodness! I remember when Baby C had her MRI at 7 weeks old. She couldn’t eat the whole day. She was so hungry and in tears. (So was I). Thank you for sharing all the info. I didn’t know all that was involved. He is growing up to be such a handsome little man.
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BRAVO! I applaud you for your looking into this “elective brain surgery” and making a decision based on what is in your beautiful son’s best interest and not based on a parents emotional desire to “fix” a broken child. I have a 23 year old daughter who was born profoundly Deaf.
Our local school district houses a Deaf/Hard of hearing program and contacted us when her deafness was finally diagnosed. She started in their infant program when she was about 20 months old and began learning sign. We were approached by “specialists” when she was a baby (when the implants first made the scene) and were asked if we wanted to hear our daughter speak and laugh. We did our research too, we horrified at what we would be doing to our baby and drew the same conclusion you have. Unfortunately, there were others who chose to implant.
My wife and I felt that the implants were too experimental and as you said, provided no guarantee and infact took away any residual hearing she may have had – should the surgery fail. We weren’t willing to take that risk since her Deafness was not life threatening.
As I said, she is now a beautiful 23 year old, young lady – happy and very well adjusted. She has always used total communication skills to be understood. (ASL and voice when in the company of the hearing, as well as her speech reading skills.).
When she was 16, we talked to her about implants and opened a dialog with her about the idea of going through the process. She was quite adamant! She told us she wasn’t broken and didn’t need to be fixed. She wore a hearing aide in the one ear that had some hearing and was fine with that. She told us she was proud to be Deaf because that was the way God made her.
Oh, and by the way- our daughter does speak; with voice and hands and she has the most contagious laughs.
(Sorry- this wasn’t supposed to be about us, but your strength is inspiring and your son is lucky to have such a loving parent and advocate.)
No, thank you for sharing your story! I think it is wonderful for other readers to hear about different parents expereinces. Especially grown children who were not implanted and had success. So often the doctors/audiologists make it seem like if the kid does not have an implant they will not be able to read/write/talk etc. I hope you will come by again and visit.
If you think getting a cochlear implant is “elective brain surgery”, then you have been completely misinformed ever since your child was born. A cochlear implant is placed OUTSIDE the skull, and does not even go into the brain. Don’t call this “elective brain surgery” when clearly you know absolutely nothing about cochlear implants. Do your research.
Yes its kind of brain surgery because it nearby between the brain and cochlea which its called auditory nerve.
Drew, I apologize if this sounds pedantic, but brain surgery is surgery that is performed on the brain, and nothing more.
This is NOT a brain surgery, the blood-brain barrier is NOT breached, the brain is NOT touched, and so labeling it as “brain surgery” is simply incorrect.
I had my wisdom teeth removed surgically, and despite the fact that they’re close to my brain, I think we can both agree that that isn’t brain surgery.
Alanna,
In order to implant the electrodes they must drill a hole through the skull. Brain swelling is a common side effect of this surgery. Why do proponents of this procedure blatantly lie about it? If there is nothing wrong with it or if it is worth the risk to you, then tell the truth about it and make your argument from there.
Is it that you need to try to bully other people into getting it in order to justify your own discretion about the risks concerning your child? If hearing is worth risking your child’s life for, then that is perfectly your prerogative. Personally, it is not worth it to me and that is my prerogative. But please, don’t downplay the risks and attempt to bully people into your position based on false information. It is a surgery and as dangerous as any surgery, especially one that drills a hole through a kid’s skull.
According to the doctor, 1/1,000 of them fail.
https://www.youtube.com/watch?v=8VZ9bKV6WSY
I’m not bullying anyone, but I am stating the facts and the fact is this is NOT brain surgery.
And I find it frustrating that so many people commenting on here try to tell people that cochlear implants are bad and they don’t work for people. Every deaf person I know, and trust me, I know a ton, have led successful lives with their own cochlear implants.
Did you catch the size of the hole? It looks huge on the video, but they state the actual size…look again, then go get a ruler and see for yourself. I watched the same video before making a decision for myself and I freaked until I pulled out my ruler, then I kinda felt embarrassed. 🙂
Alana,
No where in my post did I mention “elective brain surgery” or even imply that the brain was involved. I believe you are referring to a comment that was written on the blog and not the blog post itself.
Scott I want to clarify a couple of things you said. Cochlear implant surgery is NOT “elective brain surgery.” Other than aiding in make the implant work after surgery the brain is not involved. While I understand that 21 years ago when your daughter was first identified as being deaf the cochlear implant “world” was in its infant stages it has as the saying goes “you have come a long way baby.” Cochlear implants are no longer experimental devices and have help thousands of people to hear. Is it perfect hearing, maybe not but I can tell you as an implantee that I will put my hearing up against “normal” hearing individuals and hold my own. Yes there is rehab that has to be done but it certainly is not any different that the “rehab” it takes to teach a child to do anything else including learning sign language. I accept that you made that decision for your child, however, giving misinformation for others who may now be trying to make a decision for their child not not acceptable.
Kudos!
For many years, my family has been bugging me to get cochlear implant ( I am 49 years old male). My response was WHY?? I was born deaf for a purpose by G-d and there’s no need to fix it. I am completely happy being deaf.
Many people would say being deaf limits your potential in employment world. I laugh at them WHY? I was an executive chef for a hotel and had about 40 people under my supervision for several years. I worked hard to prove my ability and moved up the ladder real fast!
The secret? My father was very aggressive in making sure I have the fullest education to my needs. Making sure I had sign language interpreters (good ones, not half assed ones) and He also encouraged me to be part of both world Deaf and Hearing would. My dad knew sign language and we communicate on that regular basis. I did have hearing aids for years until I decided that I didn’t want to wear it anymore.
The best way to further enhance your child is to be part of their life on regular basis. DO NOT LET THOSE SO CALLED PROFESSIONALS like a doctor dictate you what you should be doing with your child. They are ONLY interested in Bottom line which is pure cash cow for them. Many doctors charge $ 20,000-$60,000 for their time doing cochlear implant surgery plus hospitals charges of anywhere $40,000 to $100,000.
BOTTOM LINE. Cochlear is NOT a cure, it is just a very extremely expensive hearing aid. You cant allow your child lead an very active normal childhood live if they had cochlear because they will be busy doing followup visits for the rest of their life. AND can’t not play real active sports like football, swimming….
ALLOW YOUR CHILDREN TO BE NORMAL CHILD UNTIL THEY ARE OLD ENOUGH TO MAKE A DECISION THAT WILL AFFECT THEIR OWN LIVES.
Thank you for writing this! I am Deaf, and like many, if not most Deaf adults, I see no need for a CI for Deaf children. We can live normal, healthy, productive lives without CIs, as long as we have access to ASL.
You summed it up beautifully in one sentence:
“I truly can’t imagine putting my child through such a procedure when he isn’t even sick.
When there is no medical necessity.”
THAT!
Hi Melanie,
I became deaf at age 13, and have been considered a prime candidate to get a cochlear implant pretty much ever since.
When I first became deaf, the technology was relatively new, and also the cause of my hearing loss was not known, so my ENT urged caution. He thought we should wait and see both where the technology went and where my hearing went (it fluctuated for a while before leveling off) before going ahead with anything.
By the time my hearing leveled off I was 18 and lucky enough to be able to make my own decisions about it.
I am absolutely not anti-cochlear implant. I miss being able to hear, and if I believed it would restore my hearing, I would get a cochlear implant.
If I even believed it would significantly improve my quality of life, I would get a cochlear implant.
But after more than 20 years (!) of extensive research, both scholarly and in person (basically, corralling everyone I’ve ever met who has a CI and asking them what they think about it — which over time has amounted to probably over 100 people), I don’t believe that it’s the right thing for me.
Yet. It might still get there.
I do find the usual coverage of CIs infuriating though, so it’s so nice to see this. Usually the coverage is very one-sided. A person gets a CI and can hear. Yay.
CI’s DO work very well for some people, which is the complication here. It’s as simplistic to say they don’t work as it is to say that they do work.
But I have met so, so many people who had high expectations of the CI and were extremely disappointed.
And I have deaf friends who like their CI’s fine but don’t really use them to communicate. They still are part of the deaf community and use ASL, interpreters, etc., but appreciate the additional information a CI provides — a car approaching, for example.
I’ve found that it’s the people who have the lowest expectations of the CI’s that are happiest with them.
But even too many of those people have reported side effects — vertigo, infections, pain, etc., etc. (Vertigo is the one I’ve seen most often.) So it’s not a risk I want to take when, by all accounts (again, over 100 by now), I won’t function significantly better than I do now.
I do still speak (since I was hearing for a long time) and I lipread very well. I have a hearing husband and daughter and function more in the hearing world than the deaf world, though I am fluent in ASL and part of both worlds.
Some of the people I’ve met are quite happy with their CI’s. So I’m not 100% against them, I’m really not.
The main thing is that I wish more of you new parents who find out that your child is deaf had access to ALL of the information needed to make an informed decision. Too often it’s just plain medical model — let’s provide more hearing, for an improved audiogram (even if it isn’t actually useful hearing). Your comment, “So often the doctors/audiologists make it seem like if the kid does not have an implant they will not be able to read/write/talk etc.” really resonates with me. I see that a lot.
Anyway, thanks for writing this, and good luck to you and your adorable son!
Thank you Jenna! At 13, I probably would have looked into the CI as well. I have many adult friends who have chosen CI’s for themselves and some of them use them ALL THE TIME and others used them for a year or so and put them in a box. It is difficult to know
I am a profoundly Deaf. I don’t have CI and I have my first degree. Now I am working for second degree! It is better to wait until your son gets old enough to make his decision by getting CI or not. I am glad that my mother lets me growing up realizing that I do not want to wear CI. I am satisfied with my idenfity.
And the one thing they NEVER show is how many implantations turn out to be failures! They only show you the “success” stories. I have seen adults who were implanted as children but they do not use the CI now at all. I have seen adult patients come into the emergency room with seizures and headaches as residual side effects of this surgery, even though their cochlear implants are turned off! And I have interpreted for Deaf individuals as they tell their hearing family members “You never accepted me, you never loved me for who I am, you always wanted to change me…” How sad is that!
Replying both to you (Lori) and Jenna,
You’re exactly right. I am Deaf and not flat out opposed to CI’s, as I do enjoy hearing and am frustrated that all the research and technological advancements have been put into CI’s and not hearing aids. I have talked to many people and seen many people who have had CI’s. The last person I talked to was a nice older gentleman I ran into at the grocery store and we talked for between half an hour to an hour! He was very pleased with his CI, although he was on his 3rd one.
I am just too leery of having it ruin what I can and do hear now with hearing aids, as I know CI’s will change the sound, and will involve a long learning/retraining process (which is probably one reason why they want to go to babies… which I feel is mostly wrong).
My biggest objection to implanting babies is that IT DOES NOT MAKE THEM NORMAL! The sooner hearing parents understand that, the better. I have seen too many children implanted and then left to function as a hearing person, when hearing sounds from a CI is NOT the same as being a hearing person. How tragic!
I know several people (young, healthy) who died. I do realize it is a small tiny risk but if I had a baby, why would I even subject him/her to that risk? I know quite a few who have suffered, to the point where they had to have another surgery to take it out of their body in order to be free of their headaches, vertigo, or other health problems. I know even more who have broken/non-functioning, or non-successful CI’s that don’t/can’t use them. And have zero usable hearing since they cannot use hearing aids now. I know many (and I think there are many more that I don’t know about since some of those I know were a surprise to me) who are happily functioning as Deaf people who had CI’s that they do not use. Or, as someone above said, use them for additional information (ie, during a movie, or for environmental sounds) but not for speech comprehension. (I do know some who do though, so it’s not an all or nothing deal here.)
MY bottom line – with hearing aids (that I love to wear) I can hear music, I can hear voices, I can hear sounds around me, and at the end of the day, I can take them off and be just the way God made me! I can turn them off and take them out if I have a headache or just don’t feel like hearing noises. With a CI, I can turn it off, I can take the external parts out, but I cannot take that implant out, ever! And if that breaks, or some new technology comes along, I can’t take advantage of it, because what I *do* have has been destroyed. I am too afraid it won’t work for me and so I will not give up what hearing I do have and do use for the slim possibility I could hear better.
Parents who want to get CI’s for their children have to understand that it is just a tool, it does not restore their hearing. ASL is a fabulous tool as well. Use BOTH. When the CI is off, when it breaks (and it most certainly will, according to the happy CI-wearing guy I met a few months ago), if/when your child decides it’s just noise and isn’t helpful, if/when your child feels like s/he just doesn’t belong, and never will, in the hearing world, then you need a completely accessible language.
If you expect your child to meet you halfway with a CI (and hearing aids as well) and learning to speak, then you do the same, meet them halfway with your learning to sign and using it in the home to fully give access and include your child in everything.
I born profoundly deaf, thank god my parents told doctor no ci for me. So I grow up with hearing aid and full asl and some esl for my hearing family. I went to college when I turn 22 I notice loss my sound! I took ear exams. Found out it was bad loss likes off the tracking. I talk with my parents think to replace the tube/drum ear and another things. So the bcbs ins was not accept it. And I decides to get ci the bcbs accept it! I was little sad, felt too much stuffer in my head. After that the surgery turn on the ci. I was shock and I kept “what that sound?” My family was shocking that I can hear far 1-2 miles away!! I glad I make my choice! My parents leave my body alone until I has a choice!! If I having baby who are deaf I will leave it. It’s make my baby happy until they want be same with me.
Thank you for not put ci on your baby/ies !!
What a breath of fresh air this is. Thank you for sharing. I hope you will write more. I am especially curious where you and your family got your “education” and wisdom. I am a Deaf adult and a very successful one ~ yet I periodically meet people who are astounded when I tell them I don’t need/don’t want an implant. I find their questions so invasive and beyond personal. It’s like asking why I don’t have children and imply something is wrong with me.
I am also on the Deafhood Foundation board and am sharing your article with all members. We so rarely see stories like yours. Again a big thank you!
Hi Marilyn,
I actually think you and I have crossed paths in Ohio before. I spent many years on the MH Awareness board here in Ohio with Darlene. Thank you for taking time to write and to share my post. I wrote this little update about “our family” – Which will give a bit of insight to where we are coming from: http://wp.me/p3QrIh-m1
I would just like to point out that this article is severely misinformed about a few aspects of a CI. Before a CI is considered, other alternatives such as hearing aids MUST be exhausted, so as to ensure that the individual does not go through a procedure when something less invasive can be done. In addition, people with CI’s CAN get upgraded external AND internal processors.
Of course, a CI does not guarantee speech or the ability to hear better. However, many surgeries don’t have such a convenient guarantee either. But what the surgery for a CI DOES provide is an option and more opportunity for the individual. They may be able to hear and live that way. However, if they don’t like it or it doesn’t work, they can still always use ASL. So in reality, a CI provides more opportunity and even if it works, there is nothing to prevent a hearing CI user from learning ASL.
I was implanted before the surgery was approved by the FDA. I know the process very well and can give much more detail than this article. While the article is right that there are risks, it unduly relies on too much fear to dissuade individuals from getting a CI.
“Before a CI is considered, other alternatives such as hearing aids must be exhausted”. Uhhh….. so, then, how can children as young as 6 or even 4 months now be getting CIs? Surely nobody can say that hearing aids were “exhaustively” tried by that time!
Sorry, doesn’t fly. CIs are MARKETED as a cure, and actively pushed on unsuspecting parents!
Don G. recently posted…Time for a flag of our own?
BTW, sorry about the link in my comment. It was unintended and irrelevant to this.
This is easy stuff to find on your own, but I’ll save you the Google search.
The FDA has a requirement that hearing aids be worn for a period of at least three months (though this is typically longer in practice) to ensure that they do not provide meaningful benefit to the patient. I don’t remember what the exact criteria were for that benefit, but I believe it was based around standardized testing.
Much of it is common sense. We have very reliable tests that can measure what degree of hearing loss a person has, and we know what hearing aids can do for people at those varying levels. Saying that a person with a 90db loss probably won’t get much benefit from hearing aids isn’t really much of a stretch, even without the trial the FDA requires.
I’m puzzled by this. Options must be “exhausted” before CIs are considered. Mmmmm. That wasn’t the case when my grandson was born. The hospital pounced on the parents immediately about an implant. Thank god both parents are Deaf and stopped the insanity. Pretty scary experience to say the least.
If the doctors knew the degree of hearing loss and it was high enough, it wouldn’t at all be strange to put them in cochlear implant territory. Hearing aids can only do so much for a person at certain degrees of loss, and that’s pretty well known.
I would guess that what happened was that your grandson fell into the area where an implant would’ve afforded him better hearing capability than a hearing aid and the doctors were pushing it from that perspective. He STILL would’ve had to go through a trial, though.
My 2-year old daughter has bilateral CIs. As part of the implant process, we were required to go through a 6-month hearing aid trial. My daughter has Auditory Neuropathy in addition to severe-to-profound hearing loss making it highly unlikely that she would ever benefit from hearing aids, but we still had to give them a try and would have been elated if she had received any sort of benefit from them. She did not. She had ONE MRI, ONE CT and although she was sedated, neither was done under general anesthesia. We didn’t choose to implant our daughter because we don’t love her just the way she is, we chose to implant her because we felt if would provide her a wider range of choices and opportunities throughout her life. What’s right for every family is different and any implication that you love your child more than I love mine because we chose a different path is absolutely ridiculous. The change in my daughter’s personality since she’s been able to hear has been remarkable and every time I see her dance around our living room with absolute joy on her face to the music that her “princess piano” plays, I know the we made decision for OUR child.
Thank you for taking the time to respond and for sharing your story. I am glad that your experience has been a positive one and I wish only the greatest success for you and your daughter.
Not true in my case and I suspect in many others. My son was fitted for hearing aids at 3 months and they worked fine and I was still offered to get CI. I chose not to since the hearing aids were fine.
And, your child still has the option of electing a cochlear implant when he is a teenager or an adult. Many argue that implanting babies is critical because otherwise they would miss out on that “window” where they have a “chance” of acquiring language. I say two things. The first, if your family is already signing fluently with your baby, then congratulations–he is getting a language model through his family. Having that language model will make it easier for him to learn English as a second language. Now, the second is, if you want to preserve your child’s “plasticity” for listening (speech discrimination) and vocalizing (speech expression), then please consider supplementing spoken English with Cued Speech. Seeing Cued Speech in combination with spoken language will keep the brain primed for using a Cochlear Implant very well even if it is received later in the teen years or in adulthood. You indicate that your family is using a bilingual approach. I wholeheartedly applaud you–I think bilingualism is wonderful (speaking as a deaf person myself). My parents also tried to learn ASL when I was born, but their signing couldn’t keep pace with my development. At 18 months I “only” knew 30-50 signs and no English words. My parents decided they wanted to be language models in their native languages first, and then provide me access to ASL as a second language once I had a firm grasp of English. When they started Cueing with me at 18 months, I was age appropriate in English by 3 years old and reading 2nd grade books in kindergarten. I also started learning ASL again, but this time as a second language, in kindergarten and always socialized with hearing kids, Cue kids, and ASL kids with ease. I finally decided to get my CI at age 15, because hearing aids and Cued Speech weren’t enough for me to participate fully in the hearing world (I didn’t want to be restricted to just the deaf community) with my bilateral, profound hearing loss. Getting a CI was HARD work even for a teenager–in fact, they do not recommend it for teenagers because of all the dedication and motivation that has to go into it, and surgeons and audiologists rely on parents of newborns to be that driving force. But within a few months of getting the implant, my “dead” ear surprised the audiologists by jumping from 0% speech discrimination to 67% discrimination. I fully attribute this to Cued Speech keeping my brain primed for spoken language reception. After five years of using the implant, I programmed it myself at age 20, and I noticed another jump in how well I was able to communicate with hearing people. By age 22, I got the Nucleus 5 upgrade, and I saw yet another jump. I never received auditory training, so when I started working in my first full-time job at 23, I saw yet another jump in how well and how easily I was able to communicate because of all the “listening” I had to do with the implant.
Actually, there are at least a few points which you make are factually incorrect.
First, there is only one MRI required.
Second, the CI does not “destroy” the cochlea. You can’t destroy a cochlea. It is merely the bony channel through your temporal bone. It is not a solid, that could be “destroyed”.
Third, many people retain their residual hearing and wear hearing aids in conjunction with their CI.
I also have no idea why you would think that your child couldn’t “laugh and play” if he had a cochlear implant.
My daughter had ASL as her first language, I am now fluent in ASL. We provided her with an ASL immersive environment (which was exceedingly difficult) and were part of the tiny percentage of parents of ASL using deaf children who could communicate above a preschool level. That being said, we implanted my daughter at age 5 and it was the best decision we made for her, bar NONE.
The truth is, less than .5% of the world was able to communicate with her, she was stuck with us always being her interpreters. She couldn’t communicate with neighbors, strangers or even her extended family (we provided free classes, lessons in their homes, and Deaf community experiences for them, and no one ever learned more than a handful of signs). And as she aged, we watched her become isolated from everyone around her.
Then there is the whole issue of English literacy…I would highly recommend that you look into the research about the literacy levels of English as a first language vs those who do not. In order to read, a child need to have a knowledge of English BEFORE they begin to read, and bridging that gap is a HUGE problem for children who do not use spoken language.
I am 10 year further along this path, and I absolutely stood where you are and wrote the very same thing. If I could go back, I would absolutely push for my daughter to be implanted SO MUCH EARLIER! I wish I could have seen this outcome 10 years ago. I wish I had given my daughter the opportunity to communicate in the mode of communication of 99% of the world earlier. I wish that I had opened ALL the doors for her, instead of keeping this one closed for so long.
Well said!
Only YOU limited her communication and interaction with the world because you ALLOWED it. You allowed her to depend on YOU. You allowed others to use you as her interpreter.
I am profoundly deaf and do not wear any hearing aids and haven’t since age 12 when IEP came onto the scene and I refused and am most definitely NOT academically delayed – why? ACCESS to ASL. ASL is my first language, learned at birth. Full access to language is the key to strong foundation of language acquisition. Not through hearing.
I am also a teacher of the deaf and have taught hundreds of students with CI at a school for the deaf. Let me tell you – they use their CIs simply as a tool to hear NOISES and not for language. They proved unable to acquire language through their CI when enrolled at a local public school. IEP teams were often forced to send them here to where I teach, where ASL is the tool of instruction. CI is really a glorified hearing aid. The sad fact is ALL of them are academically delayed thanks to their parents’ attempts to normalize them these critical first years of their lives for language acquisition. I had one class whose students all wore hearing aids – you guessed it…they were all academically on par with their hearing counterparts – how come? All of their parents SIGNED. Full access to communication and language.
Instead of CI, you COULD have opted for a high-tech DIGITAL hearing aid as soon as her deafness was diagnosed and that would do exactly the same job as a CI – a secret doctors don’t share in name of profit and contractual-binding agreements with insurance companies that require CI surgeries over hearing aids because CIs are money-makers.
I would know because I requested for a new hearing aid…and surprise, surprise. My insurance said no – you only can get CI. I went to my state attorney general who referred me to other state officials to represent me to “educate” my insurance that they violated a few laws by requiring CI when there is no medical necessity, that there are other options to CI, that the patient has the right to choose the device. The insurance lost and I got my digital hearing aids. That was when I knew insurance and health professionals are only interested in money when selling CI to patients and parents. They know CI is just a glorified hearing aid. Trust me.
Sadly, you are completely mistaken. Cochlear implants are not glorified hearing aids. They give SO MUCH MORE hearing than a simple hearing aid. With my hearing aids, I could BARELY hear anything…and now I have two cochlear implants and EXCEL in school. You think people with cochlear implants are academically delayed? Let me tell you: I am in all Honors and AP classes at my MAINSTREAM high school, with all A’s…do you want to tell me I am academically delayed now?
And those children who were sent to deaf schools because of lack of access to communication probably did not have parents or teachers willing to fight for their right of access to accommodations to help them succeed. Nothing is going to be handed to you unless you ask for it. Those academically delayed with cochlear implants probably either don’t advocate for accommodations or have parents advocating for them. It can be done in a successful way only if you advocate.
Actually, my daughter had top of the line hearing aids for 5 years before her implantation, along with twice weekly speech therapy. It did absolutely nothing for her. That is why she was a CI candidate. If she had gained benefit from her aids, she wouldn’t have been allowed to get a CI.
Also, the idea that the information that kids receive from CIs is “just noise” is again incorrect. It is likely that you have this impression because the kids you are working with were implanted late, or did not receive appropriate follow up to learn to use their devices. These children are a tiny minority. The vast majority of kids who receive cochlear implants are able to understand spoken language, without lipreading. Just visit any oral program and you will see the truth.
I signed with my daughter from BEFORE she began to lose her hearing. The reason that she had to depend on me as an interpreter is because only a tiny percentage of people in the world use ASL. As a young child with no lipreading or speech understanding and too young to read, exactly how is she supposed to communicate with nonsigners?
Melissa Jensen recently posted…Judging others
Just to clarify regarding literacy, the greatest predictor of literacy fluency is not necessarily the “knowledge of English” but rather the number of words/vocabulary known (regardless of what language it is in). This seems to be an explanation of why deaf children of deaf parents frequently tend to master English better than other sub-groups. These children usually had a massive vocabulary base so once it was time to learn to read/write, it was just easier for them make these connections to written words and build/jump off on that. Further evidence on how knowing spoken English alone is insufficient for achieving the needed literacy skills is when evaluating the sheer number of “normal” hearing people who are still functionally illiterate (I’m excluding those with cognitive and learning issues). Even though they have had years of formal education and having English as their first and only language, they still struggle. I am not denying that having knowledge of spoken English “helps” in the learning process, it can, but I wouldn’t go so far to say that it is the sole answer to it all. Clearly, your invested efforts in learning ASL and communicating with your daughter during her younger years established the groundwork and strong foundations that she needed for mastering the other language(s) for the rest of her life. Thank you for putting in the time and effort to do all that you could for her.
First of all, I applaud Melanie for her point of view which I share, too. She clearly did her homework and reached her own conclusions. I would also like to point out that in Melissa Jensen’s comments, there are inaccuracies in her paragraph about Deaf children’s reading abilities.
“In order to read, a child need to have a knowledge of English BEFORE they begin to read, and bridging that gap is a HUGE problem for children who do not use spoken language.”
Deaf children of Deaf adults learn ASL and English simultaneously (and why aren’t we calling this a miracle?)
The reason why some Deaf children are not reading better is because we are more focused on speech development than we are on language and literacy development.
I strongly suggest that for every professional opinion, parents seek the opposing point of view. Listen to why those people oppose the stated opinion.
There are too many ideologists in our lives, and those ideologies have created havoc for many Deaf adults. And, more sadly, those ideologies haven’t even been researched and proved. Those comments about the brain plasticity — when they are applied to Deaf children — are wildly inaccurate. I call them wishful thinking.
Melanie, your son is precious, and he’s lucky to have you!
Melissa,
While I can appreciate what hearing parents must go through to accommodate their Deaf children, I have to point out a couple of factual errors that you made yourself:
“I have no idea why you would say that she couldn’t laugh and play…”
Answer: Helmets, swimming, showers, static electricity (even without the receiver on, the static electricity from playground equipment can short out the device).
“There is a whole issue of English literacy…”
Answer: Yet I and many of my profoundly Deaf friends who would not touch CI with a 10 ft pole seem to use much better English grammar than you, presumably a hearing person whose native language is English, uses.
Literacy and grammar are a direct result of parental effort, PERIOD. Children whose parents read with them, play flash cards and educational games with them, monitor their homework and take an active role in their education on all levels have a much greater success rate whether they are hearing or Deaf.
If I’m wrong, how do you account for the high illiteracy rate of hearing children in mainstream schools?
“We provided her with an ASL immersive environment (which was exceedingly difficult) and were part of the tiny percentage of parents of ASL using deaf children who could communicate above a preschool level. That being said, we implanted my daughter at age 5 and it was the best decision we made for her, bar NONE. ”
You implanted the child at age 5 yet expected her to communicate above an age appropriate level?
I don’t buy it anyways because on the one hand you say that you immersed her in ASL and on the other hand you say that she had no access to ASL (stating false statistics of .5% of people using ASL above a preschool level, when had you submersed her into the Deaf community, she would have had hundreds of playmates and you would have had a support group of hundreds of other parents of Deaf children who used ASL. You contradict yourself.).
“Second, the CI does not “destroy” the cochlea. You can’t destroy a cochlea. It is merely the bony channel through your temporal bone. It is not a solid, that could be “destroyed”.
Answer: Yes, CI does destroy the cochlea which is NOT simply an empty boney channel through your temporal bone, but rather a tiny organ with millions of tiny hairs in it that translates vibration into nerve impulses which are carried to the brain and translated into sound.
http://oto2.wustl.edu/cochlea/intro1.htm
On top of all the other factual errors and misleading comments you have made, your child will never be able to get an MRI unless she has the device removed first because of the magnetic resonance of the MRI (ie. it will rip the device out of her head through her skull the hard way) costing more money and wasting precious time in life threatening situations; your child will be ineligible for certain cancer treatments and most importantly, as with any surgery, there is a risk of death associated with the brain swelling resulting from the surgery itself (lots of children have died from this brain swelling, which is why it is standard procedure to give the meningitis vaccine before the surgery but it still is not 100 percent fool proof). You chose to risk your child’s life over an elective procedure for whatever reason and fortunately it worked out for you but please–if the CI is such a miracle device, then allow the facts to stand on their own merits and tell the truth without embellishing it.
Thanks :/
A few points.
On the topic of why you think CI children can’t laugh and play, your response is:
“Answer: Helmets, swimming, showers, static electricity (even without the receiver on, the static electricity from playground equipment can short out the device).”
First of all, I’m dumbfounded that you actually believe that CI children can’t possibly enjoy life, but I guess I’d just say hop onto Youtube and look at some family videos. Observe laughter and play, despite the CI. Your point about static electricity is legitimate, but it should also be noted that a short will generally just cause the device to reset. A trip to an audiologist with a re-mapping and you’re ready to go. Not sure what you’re talking about with the helmets. As far as showers and water damage, the N6 is very water resistant and has an accessory that makes it waterPROOF, and AB has the Neptune implant which is completely waterproof, and the trend in these devices is obviously more and more toward waterproofing and shock-proofing. Ignoring all of that, though, can we just agree that it’s possible for kids with CIs to laugh and play?
On English literacy:
“Answer: Yet I and many of my profoundly Deaf friends who would not touch CI with a 10 ft pole seem to use much better English grammar than you, presumably a hearing person whose native language is English, uses.”
You can’t take a single person and try to apply that to an entire population to make your point, it’s extremely weak logic. The studies agree with what’s been said, and that’s that reading skills become more difficult to acquire for children who don’t use English. On the whole, it’s more difficult, it’s documented, and the point is valid. Google Scholar.
“If I’m wrong, how do you account for the high illiteracy rate of hearing children in mainstream schools?”
If you have some sort of study you can produce that demonstrates this in a controlled environment where deafness is the only variable, I’d be interested to see it. Otherwise, it’s irrelevant.
“You implanted the child at age 5 yet expected her to communicate above an age appropriate level? I don’t buy it anyways because on the one hand you say that you immersed her in ASL and on the other hand you say that she had no access to ASL (stating false statistics of .5% of people using ASL above a preschool level, when had you submersed her into the Deaf community, she would have had hundreds of playmates and you would have had a support group of hundreds of other parents of Deaf children who used ASL. You contradict yourself.).”
I think you misread / misunderstood what Melissa wrote.
On CIs destroying the cochlea:
“Answer: Yes, CI does destroy the cochlea”
Not much to say here. You’re simply wrong. Hybrid implants that have both a cochlear component as well as a hearing-aid / amplification component exist, today. If what you think is true was actually true, then this would be impossible, because the cochlear component would have to destroy the cochlea, which would also destroy the user’s ability to hear. Google it if you don’t believe me.
“your child will never be able to get an MRI unless she has the device removed first because of the magnetic resonance of the MRI (ie. it will rip the device out of her head through her skull the hard way)”
“Never?” Wrong again. I can’t say “all,” but I do know that “most” of the implants are MRI-compatible at certain Tesla levels. Again, Google.
On the safety of the procedure.
“there is a risk of death associated with the brain swelling resulting from the surgery itself (lots of children have died from this brain swelling, which is why it is standard procedure to give the meningitis vaccine before the surgery but it still is not 100 percent fool proof). You chose to risk your child’s life over an elective procedure for whatever reason and fortunately it worked out for you but please–if the CI is such a miracle device, then allow the facts to stand on their own merits and tell the truth without embellishing it.”
Not embellishing the truth would involve stating that the vast majority of surgeries have no complications, never mind deaths, especially when you’re talking about modern surgeries.
There is NOTHING WRONG with being against CIs, but please, at least have your facts right if you’re going to be vocal about it.
The CI CANNOT be pulled out of her head by an MRI!!!!!! This post and the people on here are so close minded and ignorant about CI’s and giving false information I can’t stand it! Who are you to judge someone for giving their child an opportunity to hear? If you wait until they are adults to make the decision they miss out on SO much and will have to work 100 times harder to catch up to their peers. Also, NOTHING is 100 percent fool proof – you have to do your research and make the most inform decision possible that is best for the child and the family, whether it be hearing aids, CI or nothing. Anyway, I need to get off of here and stop reading comments because my blood pressure is through the roof right now!!
Dear Melissa,
I am glad that your daughter is doing well, I really am. But I just wanted to tell you a little about myself, if I may.
I am a Finnish, profoundly Deaf woman. My family is hearing, but they chose to communicate with me with Finnish Sign Language only. Yet my Finnish language skill is very high, even better than some of those hearing people.
This was in response to your statement “In order to read, a child need to have a knowledge of English BEFORE they begin to read, and bridging that gap is a HUGE problem for children who do not use spoken language.” It’s not a huge problem, not at all. I also acquired the knowledge of English purely through books later on, and here I am writing in English, even though my mother tongue is FinSL.
Please, don’t generalize. It’s just a question of the parents’ language choices, and there are no right or wrong choices, it’s their choice.
P.S. I do communicate with hearing people, via texts, pen and paper, gestures, whatnot. I am a very social person, and I have a lot of friends. The most important part here being is that I’m not an exception (a few “professionals” have said that to me, which really angers me) – I know a lot of other profoundly Deaf just like me.
Melissa,
I believe you are informed correctly regarding advanced CI technology and there are some misunderstandings about current CI’s. But how many percent of those who had CI earlier, would communicate with the 99%? Has there been any research on this? What if the 99% (the family and school) that we are told, drops drastically years after high school?
so refreshing to read of this. No need to “fix” a deaf child.. let him/her enjoy life with all its surprises. Glad you chose ASL as well as an option.. this kid will be smarter than his other deaf peers who might have language delays ! I learned ASL at age 20 after being in an oral only program after becoming deaf at age 4.. missed a lot of info.. but my mom worked hard with me on lipreading and speaking. I lipread better than I speak but ASL makes it so much easier nowadays and I don’t regret not hearing.. plenty of technology makes up for that – CC tv’s, VRS services, interpreters, etc!
While you’re certainly entitled to your opinion, I just wish that you not have put so many inaccuracies in your post.
I have yet to have anyone point out inaccuracies with something other than personal opinion. Here is my response regarding inaccuracies: http://wp.me/p3QrIh-m1
I do believe that each surgeon/ENT is entitled to their own way of doing things. My information was provided DIRECTLY from the medical team.
Go to visit a school with signing children, then visit a child who was implanted before 18 mo. Then make a decision. Another consideration, if you decide sign, is you should learn to PROFICIENTLY sign. This goes for the whole family. I am an ASL interpreter and have been tutoring signing Deaf children for over 20 years. My wife is an audiologist who works with implanted children and is a certified interpreter. We would not hesitate to have the outpatient cochlear implant surgery done on our child as early as possible (<18 mo). BTW, it "ain't brain surgery". Fully research outcomes for both groups. Don't just take somebody's word.
Thank you for taking the time to post. I am fully educated on the issue. I hope you will read my response post: http://wp.me/p3QrIh-m1
Melanie, I applaud you for writing about such a sensitive topic and being so open to questions. I know that your sweet boy is being raised by wonderful parents and will be immersed in a bilingual home with siblings who love him and will use ASL as well. I don’t know the science or medical research behind this issue, so I can’t speak to it directly, but I think it’s always important for people to read why families make particular choices that feel right for them. A CI might be right for some families, but I think you have made a clear case for why you feel it isn’t right for yours.
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I said, “NO NO NO ” please don’t they want ur money ci is not success no that lie that fake don’t believe them please accept ur son deaf therefore learn sign language he will be very smart to asl communicate both of u ..I am deaf and I am very thankful my parents accept me I am normal NO ci whew!!! I am glad and thankful GOD give u a gift u a deaf son HE test u ok thank please don’t let ur son ci that is not truth u think it work NO no
What a great article! Bravo to you for choosing the great path for your son! He is soooo cute in the pic! =) American Sign Language and being bilingual and bicultural is the way to go! =)
I know folks who are delighted with their CIs and folks who have been suffering since the anesthesia wore off. Instead of arguing pros or cons of CI, I want to cheer your efforts to be bilingual! It makes a huge difference!
I wish I had seen this three years ago when we did our son’s implant. It took three years for me to get a doctor to listen to my concern that something was not right with our son. When he was born he only had a 7% chance to live because he had to diaphragm. After many many surgeries and about three weeks on ECMO which is a type of extended bypass, all of the massive interventions that saved his life took his hearing for a payment. And when we found out ( FINALLY) it was fine with us. We were not up set at all. But we didn’t know anything about deafness or how to go about raising a deaf child. every doctor told us what you do when your child is deaf is to get a CI and since he was already 3 we had better hurry up about it. WE lived in San Antonio at the time and the only deaf support is a place called Sunshine Cottage and they are a 100% auditory program school. We were never told there was a chance for a totally normal healthy life without it. Further we were not told that it may not work, that it worked by sending electric impulses through his brain or so many other things about the device. Only that it was safe and how it changed kids lives over night and a whole bunch of other things that in the end turned out to be total bull. I feel now, that they just wanted more money, and didn’t really care about him or what was best. I am not sure but that is how it feels. He had the surgery and we waited six weeks to activate it. He HATED it. from day one. He fought and fought, when he finally did agree to wear it it seems to give him just enough hearing to stress him out. We tried to work with it for one year but finally when we moved to Austin and met the amazing community there and were informed about deaf culture, the implants when in a box and were not used again. WE have even thought about having them removed but he has been through 13 surgeries and I am not eager to put him through another. I would tell every parent to stay away from this. Wait until your child is old enough to ask for it. Let it be their choice and know that after all of that work and pain, it still may not give anything more than hearing background noise and such. We LOVE our son the way he is, I wish we had not made that mistake but it is a lesson for us and a warning for others. Thank you for your beautiful informing post. I hope many parents will read it and consider seriously what is really best.
Oh Mama! I can’t imagine the difficulty of seeing your son suffer for any medical reason. I am so thankful that you found the Austin community. It is a vibrant one and the top of our list for possible places to relocate in the future. We have many Deaf friends who thrive in the community there. I wish you and your son the best of luck.
I too found many statements in this incorrect. I lost my hearing at 12 yrs of age, was profoundly deaf with no hearing for 41 yrs when I received a CI. It opened upa whole new world to me: music, phone, and a job I truly love and never dreamed of having. I used CASE from time I was 19 and still do but understand ASL also. A CI is a personal choice and when I am asked what might be best for them my clear response is it is their decision. As for children I believe it is the parent who needs to decide, it is their child, but I encourage them to learn ASL and teach their child that and continue to CI or no CI. Today I work with Deaf/deaf, HOH, Speech Disabled, DeafBlind, and clients with early stage Alzheimers, dementia and ALS.
I just love this!!! You are amazing parents!! Sign on!!! ,,/_
Hi there,
I have a son who is almost 11yrs old (wow where has the time gone), and is profoundly Deaf on both sides. Now just like you feel that you are making the right decision for your family (and I’m sure you are), I strongly believe that I have done the same. However mine is the opposite of yours, my son has bilateral cochlear implants. Before I’m judged about being lazy or what have you I should also inform you that I am currently studying to be an ASL interpreter, so it isn’t about the signing, or the “easy” road. Also, having being through the procedure I can assure you we didn’t go through all the negative things you had mentioned, and my son never felt like he missed out on anything due to appointments for Speech and what not. Was it a lot of work? Of course it was, but so is any aspect of a child’s life. At 11years old my son is very happy with the decision I made for him as a baby (and yes he is a success story, flawless speech, hears all sounds and speech), he knows he’s Deaf and is proud of it, but with the help of his CI’s he can carry on voiced conversations and watch movies or listen to music with his three brothers. As for sports, he plays hockey, soccer, gymnastics and LOVES swimming. Nothing holding him back.
I find it hard to read the part where you type “the truth behind cochlear implants”, when you aren’t living it and are going from information you have researched and read.
So all that being said, I respect your decision for your family please take the time to respect others.
Hi Marla,
Thank you for your comments and for taking the time to share your son’s story. I am sorry that you felt that my post was difficult to read. I write a full response here: http://wp.me/p3QrIh-m1 but wanted to take a minute to address the issue that concerns you. I am living it. I live in it everyday. My post audience was “the well meaning family and friends” who post YouTube videos showing only the activation. We both have to agree that there is a lot more to the CI process than then activation. The truth is that it is invasive. It is surgery. It is not medically necessary. It does not create a normal hearing experience. These 5 minute videos are a misrepresentation of the overall experience that lead hearing people (outside of the d/Deaf world) to believe that CI’s are easy, miracle makers.
Bravo!! Well said….you have no idea how proud you had made in the deaf community. As a parents of 5th generation deaf family there is nothing drastically wrong with being deaf. We can do anything and I mean everything except to hear so once again thank you for standing up for your child instead of taking medical’s advise.
Can I share my perspective as a 26 year old cochlear implant recipient who has been implanted since age 2 and a half years? I was born profoundly deaf and had zero residual hearing. I will always be forever grateful for my parents’ decision to choose to get me a cochlear implant 24 years ago and teach me to hear and speak. I cannot imagine living without sounds and not being able to communicate through hearing and speaking. I enjoy being able to listen to music, understanding the television without captions, and holding conversations on the phone with ease. The sounds do not sound “robotic” to me, and they do sound “normal” to me. In fact, music sounds so beautiful that I enjoy attending musical shows and concerts.
I also have no regrets about attending therapy and doing therapy at home with my parents. I always found that doing therapy was a lot of fun because I saw them as “playtime with my mommy and daddy.”
If you want to ask me questions about my experiences in growing up with a cochlear implant, please do not hesitate to contact me anytime.
Thank you Rachel. I am so happy to hear your story. It sounds like you had a wonderful experience growing up.
I am deaf and have been since birth. I have a cochlear implant and I have the absolute best life ever. you’re denying your son a chance at living any type of normal life and possibly doing great things. I’m sad for y’all, and I hope you’ll reconsider because it is truly the best thing that has ever happened to me. I’m in high school and I’m going to be applying to colleges soon like every other normal high schooler. I play sports, I drive, I go out with my friends, I work. I do everything a normal teenager would do. PLEASE reconsider. PLEASE. check out my website to see how normal my life is PLEASE.
Deaf people without CIs have normal lives. We go to school, we hang out with our friends, we drive, we drink, we read, we play, we enjoy sports, we go to college, we work, we pay taxes, we own houses.
One does NOT need a CI to have a “normal life”!
Miranda,
Why I can appreciate your enthusiasm for your CI, how normal do you feel when your batteries go dead or you cannot wear the device for some reason?
See, I do not have that problem. I have communication 24 hours per day, 7 days per week, 365 days per year.
I do not have to please others to fit in. People love me or they hate me (most love me), but they accept me for who I am.
I don’t think you have the best life ever. I think I have a much better life than you do–none-the-less, I am not going to try and convince you to throw away your CI because I do not need someone else’s approval or agreement to reinforce my own self worth. As long as you continue to try and please others, whether it is with the CI or anything else–you will never know what true happiness is because you will never know what it is like to be true to yourself.
If your life is so “Normal,” please define “Normal.”
first of all: my rechargable battery lasts close to 18 hours, so it never dies on me, thank you.
second of all: this was not meant as an attack, I was saying what my experience was with my CI to show that it works.
third: attacking a 17 year old girl is just a little rude don’t you think?
Miranda,
It was very brave of you to come here and share your story amiss all the chaos. You sound like an amazing 17 year old and I am so glad that you feel your CI has improved your quality of life and experiences. I hope you do great things. Please come back and visit my blog again.
I’m glad my parents didn’t know about ci. I’m 42 and my mother just found out and said. Why not u get ci. I told her I do not want one. She was shocked. I said. My hearing aids work just fine.
So proud for you for not giving CI because they are not safe but it’s helpful to hear. I’m very thankful my parent chosen hearing aids instead. Now passing along my daughter deaf and I never want CI. She can choose what she want when she 18. So proud of you and you sure got a handsome son.
You are such a great mother! You have truly chosen the best option! I worked in a deaf school that had deaf children with CI’s in an oral program and deaf/hearing and CI children in an ASL program. My preschool class I worked in was the ASL program and at lunch, the kids at our table would be signing to each other excitedly and playing games just like “normal” children should. The oral program children would only answer questions from their teachers. Usually with one word answers. It was sad but I loved seeing the difference. It really opened my eyes to what is best for young children. Bilingual/bicultural is best. Way to go!!
Let ME give you a few details:
-cochlear implants are not damaging (your son is already deaf, what is left to damage?)
-cochlear implants do not “fix” your son, they improve his quality of life
-you want your son to play, giggle, and laugh right? And I’m assuming with friends? How will your son be able to communicate with another child who does not understand the concept of deafness or has the attention span to try communicating with him when all the child wants to do is play.
Let me tell you about myself:
My name is Alanna Kilroy, and I am a senior in High School. I will be graduating this June, after having taken all Honors and AP classes through this MAINSTREAM high school, accomodated with CART services and a microphone. My parents made the best decision for me as a young girl, which was getting me cochlear implants. Because of my cochlear implants and my excellent lip-reading skills, I am able to communicate with normal hearing people and I absolutely love it. I’ve met and talked with so many different people, and by branching out and overcoming communication boundaries, I have grown confident in myself as a person. Furthermore, I have gone on trips by myself, without any help from my parents, with normal hearing people ACROSS the world to Europe. In 2012, I travelled with People to People, met approximately 30 different normal hearing people, and journeyed through 6 northern European countries. I can tell you that it was the BEST experience and having cochlear implants allowed me to do so. I talked with several people I have never met before, people from both my delegation and from foreign countries. All in all, cochlear implants allow me to participate in school, sports (soccer, swimming, softball), and make new, lasting friendships. I can’t imagine my life without my cochlear implants, when my batteries die and I’m with a group of friends, my mood instantly dies out because I can’t hear the conversations going on, I feel lost, and I feel tired. Don’t go around saying cochlear implants are damaging, and too experimental because they’re not…If you want to give your son a fair life, you would at least try to give him the ability to hear. You don’t want to trap him inside the deaf community and not let him experience the world and be able to talk with SO many different people. This world has so much to offer, and with cochlear implants, your son has the offer at a chance of hearing. Don’t deny your son of the great opportunities in life he could have.
Ah.. I shouldn’t be reading comments here any more, but I just have to reply to this one as well.
Alanna, I am profoundly Deaf and English isn’t even my second language, it’s third – Finnish Sign Language and Finnish language being my first ones. I learnt them both very quickly without problems – without hearing and speech. And no, I’m not an “exception”, I know quite a few who are just like me.
I drive, I travel around the world, I have loads of friends (both deaf and hearing), I was admitted into an university class which only could take 13 out of 600 applicants (it’s a different system here in Finland), I learn other languages and their respective sign languages quickly (Norwegian, Serbian, Icelandic, you name it). No barriers here for me, without hearing and speech.
Again, over-generalizing seems to be thriving here. Everyone is entitled to their opinions, and we should discuss about them constructively, not pointing out their “errors”.
Alanna,
I hope that as you become older and go through college and meet more people outside the bounds of your current experience, you will meet a wide diversity of people and learn to not pigeonhole certain groups based on what they have/don’t have or are/aren’t.
I don’t have a cochlear implant, yet I’ve done everything you say and assume I didn’t or shouldn’t have been able to. I applied to colleges and got into Ivy League schools. I have three college degrees. I played competitive sports – volleyball, basketball, softball – in high school and have competed in equestrian sports. I also snowboard and teach it and am involved in community volunteer projects with hearing people. I’ve been to Europe five times, including a nearly month-long backpacking trip WITHOUT the assistance of any hearing person or hearing devices, and Asia. While there, I met plenty of people and had wonderful cultural experiences, including talking with a former Croat soldier who showed me where he fought on the front lines of the Balkan wars. Did not having a CI stop me from being able to do any of these? No. Attitudes and assumptions, not hearing levels, create barriers.
My experiences learning to overcome communication barriers did the exact same thing for me that yours did for you. Our barriers were just different – just as our attitudes apparently are. When I’m in a social setting with hearing friends, I don’t have a device to fail on me, and I don’t get sad and mad and withdraw or drop out. I keep going right on communicating, because it’s the communication that matters, not HOW you communicate. I learned confidence, positivity and endurance in any and all situations – that makes all the difference in the world.
I am not against cochlear implants. My husband, like you, has had one since he was young and grew up oral. He used to think the same things you’ve expressed here and it was not until he was in college that he learned how wrong he was. What I am against are assumptions and stereotypes based on your own limited experience. There are some things I do better than my husband, some of them because I grew up with full visual access to communication. There are some things he does better than me because he has the CI to help him out. Sometimes I have to help him out (*gasp* a non-CI helping a CI person!?!?!!), sometimes he helps me out. We work TOGETHER to support each other because we both have benefited from our different, unique upbringings that gave us different abilities.
Again, I just hope your life beyond high school takes you in a direction of greater learning and understanding about the diverse human (and deaf) experience. There are many deaf people out there doing many wonderful things, with or without hearing technology.
Tara,
I was just wondering, how do you communicate when you are in those social settings with hearing friends and they do not sign?
Alanna,
“when my batteries die and I’m with a group of friends, my mood instantly dies out because I can’t hear the conversations going on, I feel lost, and I feel tired.”
See, I can honestly say that I have NEVER had that problem because I can communicate with people through windows, in separate cars, across a crowded lunchroom–no batteries required.
As far as children communicating with each other–kids figure out how to play with ANYONE.
I can communicate with hearing people as well as deaf people–through chat programs, IM on my phone, passing notes, along with a variety of other methods.
And again, MY batteries never go dead and I do not feel isolated when I do not hear what is going on.
I enjoy my quiet world 🙂
Michelle,
Communicating through windows is my favorite! 🙂 I love that I can share a whole conversation with someone just through my facial expressions.
Allana, as a young adult I applaud you for your courage to share your experience out in the open. I thankful for young adults like yourself who challenge the typical sterotypes of Deafness. However, I also know many amazing Deaf people who do not have CI’s that have had similar experiences. They are independent, self thinkers. It is about “normal” or not “normal” is about pride. I hope as your grow and experience more of the world you will see that no one is “normal” and that we are all just trying to do our best to experience all that life has to offer.
So many people on here have twisted my words to make me sound like I don’t appreciate diversity or think that CIs make you normal. Of course they don’t make you normal or become a normal person! There’s no such thing as normal people!! What I meant by normal was people who do not have a hearing loss. I will state this again: Cochlear implants improve your quality of life. Also, I know there are so many people who are so different trust me, my experience meeting different people is not limited, don’t make assumptions when you do not even know me….I know both deaf and hearing people, some who speak and some who do ASL. I have nothing against ASLers but I do not like it when people try to spread false and negative information about cochlear implants. I know there are many many ways to communicate with people and that’s wonderful!
Hmm! I have spent years since 1984 standing AGAINST cochlear implanting. It is snake oil sold by those who are in it for money.
Those in medical profession have violated the Hippocratic Oath.
I personally do not see the benefit. It is unfortunately how those hearing people and those with pathological attitudes are not listening to us for the past 134 years.
Those hearing people think they have cure for deafness. Pardonez moi! You all are wasting time and money.
Like George Veditz said in 1913 that American Sign Language is here to stay!
So be it! I ask that everyone refrain from the idea that cochlear implant is a magic pill that cures deafness. Let’s see when those pigs will fly. Have they flown?
I guess not! Time to change and respect the Deaf community more.
They are the ones with answers to the needs of Deaf.
It is time to cut down audism and illegal practices of genocide and oppression.
Why do we stand and pledge to the flag? It says “Liberty and Justice For All”??
Well, there is a lot of hypocrisy in the medical profession as well as Deaf Oral Education and Alexander Graham Bell Association for the Deaf.
And lastly, it is time to cut the bull and mend your ways to respect us more.
I am proud to be Deaf and I cherish my language and culture.
This is my 2 cents!
ASLingly yours,
Paul Kiel
A Proud Deaf Advocate/Activist
January 16, 2014
Cochlear implants are not a cure for deafness as you said, however, they allow me to hear. There is a difference. While I would love to be cured of my deafness, I am forever grateful for the cochlear implants that allow me to hear (I will put my hearing abilities up against any “normal” hearing person) in spite of my deafness.
Have you ever been implanted with a cochlear implant? Have you ever heard the wonders it does for a person? Cochlear implants are not a cure, they’re there to help improve the quality of life for a deaf person. Genocide/ oppression??? Where is this coming from? SOME people actually want to hear, and experience sounds like normal hearing people.
I’ve seen a lot of this, so I might be able to give some insight.
The “audism” / “audist” remark is used to try to conjure up the same feelings as “racism” / “racist.” Certain individuals will label you an audist merely for believing that being deaf or hard of hearing is a kind of disability. It’s a thinly-veiled way to make those who want to help others to hear to feel guilty for it. The more subtle version of this is “these deaf people don’t need to be fixed!” Don’t bother bringing up the parallel arguments of vision issues or any other debilitating issue that people will seek treatment, the point is ignored.
I’m guessing instead of “genocide,” he really meant “ethnocide,” and this is the growing fear in the old-school Deaf community that technologies such as cochlear implants are causing a shrinking of the Deaf community, which to them, should be more important to a parent than any concerns they might have for their own child as an individual. The same arguments were made about hearing aids before they were prevalent, and the next generation of the Deaf community will hopefully follow suit and accept CI users as well.
Andy,
It is the CIers who refuse to accept the ASLers.
Whether you get CI or not, it is my opinion that it is absolutely stupid to not learn ASL with your Deaf child because there are many times when the device cannot be used for various reasons.
Yet, it is the CIers who are constantly bashing the ASLers, just like yourself right here in your own post.
You never mentioned whether you are deaf or not but even CIers are victim to audism which is a REAL form of discrimination and for you to belittle it kinda makes me think you are an audist yourself (most racists, to use your own analogy, are unaware that they are in fact racists).
Audism is a real discrimination that affects ALL deaf people whether they have CI, BTE or prefer Deafhood. Do NOT diminish the struggle that we ALL face regardless of which lingual path we have chosen.
Frankly Sir, it is none of your business what my preferred mode of communication is. PERIOD.
The Deaf community is not the problem. It is AGBell and people like you who really are bullies but call others bullies to hide the fact that you would invade our homes and our lives and force this on us against our will by using the courts, propaganda, misinformation, slanted statistics and any other means necessary to pad your pockets (because if I had to bet, you are an audiologist aren’t you? Thought so). You call us bullies? You are the one who refuses to accept the fact that we have made a legitimate choice that happens to disagree with yours.
I LOVE DEAFHOOD. How much more clearly do I have to say it? That does not mean that YOU have to like it (although I can guarantee that every single person on here who is touting the glory of hearing has at least once in his or her life told someone to shush or became annoyed with different sounds that bothered them–and this is the life you want to force on me? NO THANKS!).
But, audism is REAL and don’t you dare discredit it because it affects CIers and ASLers ALIKE!
Argh. Where to begin.
“Whether you get CI or not, it is my opinion that it is absolutely stupid to not learn ASL with your Deaf child because there are many times when the device cannot be used for various reasons.”
First of all, AND VERY IMPORTANTLY, I don’t see this as “CIer” vs. “ASLer.” I think it’s an extremely limiting view when you take a step back and realize that these are tools, which should all be used apporpriately if they can be helpful or useful to the person. I fully agree that ASL should be taught to ANY deaf child, regardless of technology, at a time when it’s appropriate.
“Yet, it is the CIers who are constantly bashing the ASLers, just like yourself right here in your own post.”
I don’t see how I bashed ASLers, Michelle. I didn’t even mention ASL in my post. You have to at least try to attack the content of what I actually said instead of making sweeping generalizations that are incorrect.
“You never mentioned whether you are deaf or not but even CIers are victim to audism which is a REAL form of discrimination and for you to belittle it kinda makes me think you are an audist yourself (most racists, to use your own analogy, are unaware that they are in fact racists).”
You’ve missed my point if you think I’m arguing that the word “audism” isn’t a legitimate term. Can you explain why, exactly, I’m an audist?
“Audism is a real discrimination that affects ALL deaf people whether they have CI, BTE or prefer Deafhood. Do NOT diminish the struggle that we ALL face regardless of which lingual path we have chosen.”
I’m not diminishing ANYONE’S struggle, and to say that I must be because I think the term “audist” is abused is a horrible correlation to make and a horrible attempt at making me feel guilty for thinking it. Audism is a real world with a real meaning and some people truly are audists, but there are members of the Deaf community who love to misappropriate it. You just tried using it against me.
“Frankly Sir, it is none of your business what my preferred mode of communication is. PERIOD.”
Strawman. I don’t disagree with you at all and I never said otherwise. You’re pulling this stuff out of thin air.
“The Deaf community is not the problem. It is AGBell and people like you who really are bullies but call others bullies to hide the fact that you would invade our homes and our lives and force this on us”
Strawmans all over the place. If you really believe that I think that your home should be invaded and an implant forced on you just based on what I wrote, I pity your paranoia. I don’t believe any of that. And I DON’T think the Deaf community as a whole is a problem, I think it’s fantastic. I’ll reiterate my point: I disagree with the extremists who are obviously terrified of technologies such as CIs (it’s going to be extremely tough for those folks once gene therapy and hair-cell regeneration becomes viable) and will go as far as spouting horrible misinformation in an attempt to prevent anyone interested in the technology. If you’re going to say “CIs offer absolutely no benefit,” then that’s probably you.
“(because if I had to bet, you are an audiologist aren’t you? Thought so)”
Wrong. I’m a software architect and no, I don’t work with audiologists, cochlear implant companies, or any other related field. You’re really grasping here.
“You call us bullies? You are the one who refuses to accept the fact that we have made a legitimate choice that happens to disagree with yours.”
You’ve made it very clear that you have no idea what sort of choices I’ve made, Michelle, and I didn’t call anyone a bully. Yes, I often (not always) see the term “audist” poorly used in a weak attempt to bully those who don’t think that hearing technology is a form of ethnocide / genocide / whatever other sort of dramatic term.
“I LOVE DEAFHOOD. How much more clearly do I have to say it? That does not mean that YOU have to like it (although I can guarantee that every single person on here who is touting the glory of hearing has at least once in his or her life told someone to shush or became annoyed with different sounds that bothered them–and this is the life you want to force on me? NO THANKS!).”
No one is in here “touting the glory of hearing,” and if they were, it would be extremely crass. I think deafhood is awesome as well (TRULY), but I think the desperate thrashing that SOME people exhibit against technologies like CIs is just that, desperate, and it’s unfortunate. I do not attribute that to Deaf culture as a whole by ANY means, only the unfortunate few within it who look at it as a threat that has to be battled by trying to shame people with terms like “audist.”
I’ll give you some insight into what I ACTUALLY think rather than the incorrect stereotypes you’ve assigned to me so far. Here’s what I’d love to see. I’d love to see the Deaf community reject the extremists who willingly or ignorantly distribute their lies or ignorance (“CIs bring no benefit to anyone!” “It’s brain surgery!” “You’re an audist if you want them!”) just as they did with the extremists who were terrified of hearing aids and lashed out against those who used them way back when. The technology isn’t going away, it’s only going to get better / smaller / safer, and regardless of the fact that those with hearing loss can obviously live perfectly fulfilling and normal lives, CIs and the other things coming down the road (gene therapy / stem cell / etc) are going to be a very attractive option for many people. Not all, but many. It’s inevitable, and as soon as the extremist sentiment is wiped out of the culture and is replaced by one that embraces everyone regardless of what tools they choose to use in their lives, the better.
And some people actually and honestly do NOT want to hear, Alanna. That is what you are refusing to accept.
I understand your reservation with pursuing CIs. To think that your 7 month old would have to endure all that it entails to receive a CI does seem overwhelming at first. We thought so too when our son at 13 months was diagnosed with profound hearing loss. We never doubted for a moment that he was created without mistake or blemish by God. He was (as we all were) created intentionally and purposefully. We ALSO though, wanted to give him the chance to interact with the hearing world! He is an AMAZING boy and knowing that cochlear implants would allow him to freely interact with hearing friends and family around him who didn’t know ASL was a gift WORTH giving him, even though the journey was hard to get there.
Cole was implanted (by incredibly capable and loving hands) by the ECHO team at Carle Foundation Hospital in Champaign, IL at 18 months. He was activated days before his sister was born and was able to hear her first cries :). He went to speech therapy and one year of preschool at Carle Auditory Oral School with the most caring and invested therapists and teachers I could’ve asked for. They became like family to us. Once he turned 4, he was mainstreamed into a preschool down the street from our house with his hearing peers as the only kid with hearing loss at the school. Once he started kindergarten, our district found him to be TOO highly functioning to qualify for any speech therapy at all!
Cole is now 6, in Kindergarten but performing above grade level and reading fluently. His favorite things to do are play team sports. He plays soccer, basketball and baseball on city teams with hearing peers as the only child with hearing loss in the leagues.
While I deeply respect the ability of a parent to make choices for their child, I share our story with Cole to give you perspective of the impact the choice of a CI makes beyond the first few years of a child’s life. You may not be able to imagine enduring the difficult road to CI’s but beyond the initial surgery and first few years of therapy (which he now has very little memory of!) CI’s give them the chance to choose which mode of communication they want for their future. We always said…we choose hearing now since its harder to choose later in life (the rehabilitation process is much harder the later it’s chosen). But any time he wants to take off his “ears” and communicate with ASL he can. We’ll support him all the way.
We all love our boys though, and regardless of their communication style…they are all gifts from God raised by parents who love them and are making what we believe to be the best choice we can in the moment we’re given the option. What an honor! Blessings to you, your family and your sweet boy!
Danice Burdett recently posted…Our little ATHLETES!
Thank you Danice for sharing your story. It sounds like your son has an exceptional life and I do wish all of you the best in the future. The assumption that many people are making here is that I am coming from an uneducated, inexperienced place. I too have seen kids implanted at a young age that excel immediately as well as kids that struggle constantly. It is a difficult decision. For us the risks out weigh the unknown benefits.
Thank you for taking the time to reply, Melanie! What a job you’ve taken on responding to all these varying comments! Such an honorable goal :). I did want to mention one more thing to you on your journey with your boy (who is ADORABLE, by the way!). From the look of your blog, it seems you are a Christian. Please forgive me if I’m wrong! If you are, and you follow Jesus…be encouraged! We also prayed fervently in this decision process with our boy. No other time in our life was sweet with The Lord as He gave us courage to know that where He leads, He provides. I’m not saying that this always means that the outcome is one we like, but He uses even the disappointments to draw us and others closer to Him. Whatever He is calling you to do for your boy, I encourage you as a sister in Christ, to not make any decision for Him out of FEAR. fear of the unknown, or fear of the known risks ahead is one way the enemy keeps us from experiencing the fullness of Christ as we trust in Him with it all. What is and what can be.
You mentioned that Cole has had an exceptional experience. His experience is the result of an army of prayer warriors around Him cheering Him on, and amazed at what God can do in the life of a boy and family fully believing that a Cole is HIS.
God may call you to stay the course and not give your son CIs, OR He may ask you to have faith that despite the risks, trust that HE will write your sons story and is not bound by statistics or the previous experience of others. Even through complications, a life fully devoted to Him will be a platform for God to recieve glory through a family fully committed to Him and watch him walk on the waves of the storm.
A metie once said…”Whatever choice you make, don’t ever make a decision fueled by fear.”
I pass that wisdom on to you so as you move, it’s prompted by God’s call for your son’s life. I don’t think CI’s or no CI’s is the real question here. What has God prompted you to choose for your boy? God’s choice for each child is the right one. He told us to give our boy the chance to hear and the attention he gains from wearing his CI’s causes others to marvel at our God. He can do the same for yours who learn to sign, but whatever the communication style, let’s pray the are used for the glory of our God!!!
Danice Burdett recently posted…How our family uses ESSENTIAL OILS
Sorry for so many typos! Typed quick on my iPad before getting my girls off to preschool!
A *mentor once told me… (Not metie)…sorry!
What I was trying to say (not very well!) was…as long as your decision for your boy comes from a vision the Lord, then it’s right everytime and HE will supply all your needs :). He’s done that with our Cole as we followed His call in faith. Praying the same for your journey! One step at a time with a faithful God 🙂
Danice Burdett recently posted…How our family uses ESSENTIAL OILS
Kudos! I applaud you for your courage to stand in the child’s interest and for your critical thinking. It’s very uncommon that a hearing parent looks at the right angle despite so deeply grained phonocentrism in hearing society. Your decision is very much rooted in reality, not in illusion of media and hearing ideology. He will be forever grateful to you for listening to him, even before he begins to manually babble at 6-7 months. He will. Btw, using hearing aid (no difference in result from CI) along with bilingual-bilingual education and home is a wise option.
Manually babble 🙂 He already signs “milk” and “all done” since 5 months. I keep trying to get a video but he is breastfed and likes to sign when his food source is exposed. Thanks for commenting.
Love to see this kind of story. We too have taken the no implant route for our 15 month old son. He’s definitely picking up on ASL very quickly! It’s natural language for these little people.
So encouraging to see other families out there with our same philosophy. Sometimes it’s hard to find in our hearing world.
Thanks G-d for parents who did not force me to get CI!!!
Our family has been blessed because of CI. I have two sister-in-laws who are deaf. They lost their hearing slowly throughout their life. So they had the advantage of also being able to hear when they were young. They did not grow up dependent on signing but were excellent lip readers. Because they had some hearing and because they really lived in the hearing world their speech was excellent as well. However, as they aged and became adults their hearing diminished. AND along with their deafness they were also legally blind (Usher Syndrome). Their blindness was similar to their deafness. They lost it gradually. My oldest sister-in-law held out for a very long time before she got her CI. She waited for the latest technology. However before she got it she had just 8% hearing and was no longer using her eyes. As you can imagine it was very difficult to communicate with her. She would talk and we could only respond by spelling in her hand. The difficult thing for me was that so many deaf people are so anti-CI and they wouldn’t even dare tell some of their deaf friends that they were going to get a CI. I know their situation is unique. They also lost their ability to lip read and to sign. Thank God for modern technology and Braille . . . But even with their great limitations they still received grief from the deaf community and that is shameful. Until you walk in someone’s shoes you shouldn’t judge like that. They accept how God made them but they are also so thankful for technology like the CI. How wonderful it is to now be able sit across the table and be able to have a TWO-way conversation! Grateful in our family.
Every decision is personal. I think that deaf children should learn to sign and to understand their deafness but we can also be grateful for the technology that is available.
Interesting,
Must take a lot of courage to write something like that.
I respect your opinion
But I dont agree on it.
I think you should condsider meeting more people that have been given CI at birth and see how they have turned out.
I am very suprised you say these kind of words about the CI world.
Both paths of having a CI or not have their ups and downs.
My path was a CI.
Background:
-born Deaf 100%
-given implant as infant
-went through speech therapy in early age
-went to mainstream school and fit in extremely well
-recieved full academic ride to college
-currently in college and I never look back with regret
Yes. CI have their downs too.
But nothing is perfect.
What can I do about it? I have to adapt and live with it.
I respect what you say about the side of not getting a CI, but the CI side needs some credit or some positives.
Thank you
Thank you! I am 46 yrs old and I had a CI put in before I was 40. The things I went through and am still going through are proof that this is NOT a miracle cure. I could hear and speak for a long time but you still need to train your brain to function with the CI. I have 2 deaf sons and people ask me when they will get theirs. My answer is, unless they ask for it, never. The medical community needs to understand that a CI is a aid, just like a hearing aid, it works on some people but not everyone. Deafness is not a disease that needs to be “cured” but an actual disability to be understood and overcome. Once again, THANK YOU for speaking out.
Obviously someone forgot to tell my five year old that she can’t “laugh and play, run and giggle” with her bilateral CIs!
Her candidacy process involved a five-minute CT scan under sedation (not general anesthesia) and some hearing and cognitive testing, as well as counseling for me. There was no extra “poking and prodding.”
I don’t see the CI as a “cure,” nor does she need one. I see it as a tool that gives my daughter the opportunity to learn the language of her family, neighbors, and community, as well as the language she will need to learn to read and write. She is also learning ASL. She has the opportunity to become FULLY bilingual, bc she can fully access both languages.
I feel like my job as her mom is to make the choices now that will give her the most choices in the future. For us, that made the CI an obvious choice.
I’m not “for” or “against” CIs in the abstract, or for anyone’s individual child. But I am for accurate information that allows parents to make informed choices.
I am all for parent choice when it is based on the right information. This blog should certain claim and state it is not written by a medical professional and this is based on opinion or what you’ve been told. If it’s validation for the decision you are making for your child, then writing this type of misinformation is a way to get it. I find parents who write these type of posts, there is a window of doubt for what they are doing and the decisions they are making. To me, as a person very familiar with the Deaf community and exposed to multiple communication modalities, you sound like a parrot of what you’ve been told by the Deaf community and not doing the research yourself and for yourself. For example, if you did your homework, you would know the surgery does not destroy the cochlea. New techniques are preserving the cochlea. Another example, there is a thing called brain “plasticity” and these child have a very small window of opportunity to utilize it and gain language skills similar to their hearing peers. Lastly, the Deaf community is a very small world that your child will only eventually feel comfortable associating with. Best of luck!
Hi Amy, please read my response here: http://wp.me/p3QrIh-m1
his body, his decision. that’s been our thought process when we had our son 8 years ago today and we were informed he is Deaf. we learned American Sign Language and now it’s primary language in the home. if he wants a ci, he will make that determination for himself.
BRAVO!
This is probably the first blog entry I have read that was written by a hearing parent who has decided not to let his/her child undergo a Cochlear implantation.
I am deaf myself. I was born into a deaf family, so my situation is far different than your son’s. I have always tried to be open-minded to people giving their deaf children a cochlear implantation, even if I know that what doctors promise them is more likely far from the truth. I have seen a lot of children with a Cochlear implantation grow up “half-linguistic”, that is, they do not fully grasp the spoken language nor do they sign fluently.
I know that everyone wants their child to be normal- to be like everyone else. But a deaf child is not handicapped. The child can grow up with a lot of opportunities if he has a family who is able to communicate with him and if he gets education in a signed environment.
You made the right decision and I hope that your little child will grow lucky to have you as his parents. Being deaf is not a curse. Just give him plenty of love and never let him think he is less worth because he is deaf – because it is not true.
I also met a hearing family in Australia when I went backpacking there two years ago. They had five children and their youngest one was deaf. They decided not to let him undergo a surgery and instead learned to sign. They thought it was easier for the family to adapt to it that way, because his siblings could learn to communicate with him that way. Getting a cochlear implantation would mean more adaptations for the family, they claimed.
I think there is some truth to that. I don’t blame parents who give their deaf children a Cochlear implantation – I have met some children who have been successful, but I have also met far more children who have not been successful. I think people just don’t know that it is much easier to learn to sign and that a deaf child will be multilingual if he/she gets sign language. A visual sign language makes it easier for a deaf child to acquire a language and to learn to read and write.
you’re doing well. I am deaf and have CI from holland. I am satisfied with my ci. but other hand, there are a risk. 10 years ago, my head hit hard by football, I was half knocked out. therefore I forget a lot of things.
let your child enjoy his life without risk!
ci is like electric thing as television, mobile. once they fall, they will cause damage. ci makes life too damaging.
look at this link, many deaf people are against ci. they do not want babies get ci.
https://www.facebook.com/groups/172527192955904/
I am so glad that you shared your story, we need to hear more of these stories.
I grew up in both culture and I do not need CI. I am satisfied with what I have. As for people who are hard of hearing definitely do not need CI as we can hear enough from some sound.
I do not believe in having babies to get CI not until they get older and make their own decision.
I am glad that you made that decision. Anything could happen to babies if they get CI, it is too risky!
To some of the folks, please don’t tell that person that has so many inaccuracies. All are entitled to an opinion. However. I am disappointed someone here said “assumes” or is “judgmental” on how that person’s parents could not keep up pace with developmental while learn ASL. Seriously? You insulted your own parents who put in effort learn ASL. Slow or fast pace, they still learned to communicate with you. Be appreciative of that. My parents learned at their own pace. Eventually, they communicated with me fully than written or little communication! That was important! I’m grateful my parents knew signs to be part of the signing community. Clearly, you had no patience or appreciation. I’m tired of hear this. I rather see them sign than NONE at all. It turned out it was useful at end as they’re Deaf now due to the illness and surgery cut off the nerves part. They didn’t have to worry about learning ASL at a later age.
Hi Melanie – first and foremost, good for you for doing what you feel is best for your son. I think that regardless of what “side” you might be on, that’s what’s most important.
I’m a parent of a deaf four month old boy and have absolutely immersed myself in the world of hearing aids, CIs, and Deaf culture, and I just wanted to share some of what I’ve learned that disagrees with some of what’s written here and in the comments. I want to clarify that I don’t think you made a wrong decision, because that’s insane; you know what’s best for your own child, and I have nothing but respect for that. I just want to share what I’ve picked up in case it’s interesting to you or your readers. I certainly mean no offense and hope you don’t interpret this as an attack.
– The cochlea is NOT destroyed when implanted. You are absolutely correct that in the earlier days of implantation, the cochlea was typically damaged enough that any residual hearing would be lost, but modern electrodes and surgical procedures have cut down (and continue to cut down) on this negative. My ENT had a figure of roughly 70% success rate in retaining residual hearing, the best in the US is apparently 98%. In fact, there are cochlear implants coming to market that have both an implant AND hearing-aid component, the latter of which would obviously be useless if it were true that residual hearing is always destroyed during implantation.
– One of your commenters mentioned that this is brain damage – it absolutely is not.
– You are NOT stuck with whatever CI you get when the surgery is performed – the speech processors are easily upgradeable (happens all the time, actually!) and the implants can also be replaced if need be. The former occurs MUCH more than the latter, but when the implant itself sees a big boost in tech (optical stimulation will be a MASSIVE upgrade), we’ll probably see more.
– I couldn’t agree more with you that the surgery is scary, but the procedure itself has a very high success rate (no complications), it’s actually classified as an outpatient procedure, and you’ll read that most kids are completely back to their normal selves within a few days. That doesn’t negate any of what you said about the procedure, I’m just trying to illustrate that, though scary, it’s not brain surgery, it’s a very quick recovery, and it’s a low-risk procedure.
– A commenter mentioned that deaf kids don’t need to be fixed. I think it’s a misconception to categorize those who want to use CIs or get them for their kids as being that deluded that they don’t understand that CIs won’t give their kids normal hearing. My wife and I are interested in CIs for our son on the basis that it’s a tool that he can use, NOT a fix. We’ve been very impressed with what modern procedures and technology can do for these kids and we’ve read a lot of great stories online about the possibilities, NONE of which state that they or their child can now hear perfectly. You’re absolutely right that getting a CI comes with no guarantees, but I think the general perspective of those who go for it are that the downsides of the surgery and the equipment are worth the opportunity for their child (again, I understand and respect why you wouldn’t, though!).
– Brain plasticity has been brought up as well as the thought of not implanting to wait for better technology – there are a myriad of studies (scholar.google.com is a great resource for unbiased and raw science) indicating the importance of exposing your child to audio early on to prevent the auditory nerves from atrophying. Learning a language (including ASL) is also crucical during this time, but it’s important to know that aside from language acquisition, the wiring between the brain and the cochlea itself also break down over time, so the strategy of simply waiting for something better to come along might not be ideal. Then again, the future might also give us the benefit of getting around that breakdown, so you never know. 🙂
– The above is also why the “wait until they’re 18” argument has diminishing returns.
– Kids can play football with cochlear implants and commonly do. Speech processors are also becoming increasingly water resistant or waterproof altogether or have accessories that protect them from water damage.
– In the US, at least, cochler implants and their surgeries are generally covered by insurance. If you want to really dive into the financials, then cochlear implants are actually less expensive over time than the cost of extra support services.
Anyhow – your son is beautiful and clearly has the most important thing going for him, and that’s having supportive parents. Good luck!
Well said Andy!
Hi Andy! Thank you for your very detailed comment. I would encourage you to read my response post because it addresses some of the issues you raised directly: http://wp.me/p3QrIh-m1. However, I think it is wonderful that you and your wife are doing everything in your power to educated yourself regarding your son. I wish you all the best of luck.
I applaud you for doing your homework/research on everything for your beautiful son! You did the right thing, don’t fix a child if a child isn’t broken…why expose a child to unnecessary suffering when a child should be free and be him/herself. I’ve some friends who regretted having CI as it’s still painful to touch where CI is…and if it’s broken, they have to pay it themselves which they couldn’t afford (most people will take it just because they don’t have to pay for it but in the long run, it isn’t worth it). CI websites will NOT tell about the negative part…it’s unbelievable. So glad you made the choice to learn ASL to communicate with your son! Keep on teaching him, encourage him to do everything he can learn. Get him to read plenty of books. Kudos to you for being a great mother! I’m deaf and proud of who I am and will never consider CI! Stay strong!
Roberta, getting a CI isn’t about “fixing” a child as if they’re broken. I think that’s a sensationalist strawman that’s unfortunately used to paint CI-users in a negative light. Obviously no one who gets a CI goes into it naively thinking it’s going to be a fix for all of their hearing issues. If you’re going to go so far as to get the surgery, you will have done the modicum of research required to know that it is NOT a fix, but it IS about providing an assistive tool.
CI websites don’t talk about the downsides to CIs because they’re nowhere near as prevalent as some wish they were. There are plenty of studies that have been performed by non-partial parties which demonstrate the benefits that CIs can deliver as well as failure rates, and as you can probably guess, they’re pretty favorable. I never understood this logic – do you believe that there’s a conspiracy to only promote pro-CI agendas and that any anti-CI sentiment is somehow getting wiped out without anyone noticing despite it being such a hot topic?
Finally, regarding what you’re implying in your last sentence, a CI doesn’t define who you are, the same way glasses don’t define a person, the same way a wheelchair doesn’t define a person, the same way artificial limbs don’t define a person, the same way braces don’t define a person, the same way a hearing aid doesn’t define a person. These are all tools, and a CI is no different.
Again, I have nothing but respect for the choices that anyone makes in this area, I just hope they’re informed and have accurate information.
I have to disagree with you on the idea that all parents do their due diligence in researching CI’s before implanting their children. I truly don’t think that is the case. I think many kids are implanted with only the recommendation of their immediate medical team. Finding out your child has a hearing loss is overwhelming. Resources can be limited and yes I do think CI’s are often projected as this be all “cure” for Deafness. While I don’t necessarily think you are the exception to this, I do think that you there is a lot of misinformation out there regarding the success of CI’s and children.
Granted, “all” is probably too strong of a word. I can understand scenarios where doctors / audiologists simply explain a CI (or any other tech) as a cure and going off of that, but I doubt it’s the majority of the cases.
Aside from that, at some point I can’t relate to the parents who DON’T do their own research on a tool like this before undergoing a surgery. Blows my mind, but not everyone is as engaged in the welfare of their children as others.
People do not realize, you can have BOTH. My 17 year old deaf son has the implant. He loves his implant. He goes to a school for the deaf. He is fluent in sign language. He has a strong deaf identity.
I am profoundly deaf and I have the implant. My son encouraged me to get one and I got mine 4 years ago. I am amazed everyday at the things I can hear. I have much love and respect for both the deaf and hearing world.
It is not all black and white. My opinion, give your child all the tools. Then your child truly has choices.
I agree! I grew up with both ASL and English. My parents didn’t expect me to be fixed or anything. I have a strong Deaf identity, and function just fine with hearing people. I’m grateful for the ability to smoothly transition between interacting with hearing people to interacting with deaf people and back and forth. I’m accepted in both and i communicate great with my parents. So I think thats the important part.
PS…God has given me tastes of sound over the years, heard water splashes, 3 women crying, printer clacked 3X, etc., He has shown me that He has the power to make me hear but just gave me bits of fruit to hear, so I know I will hear when I die…I’m here on earth to learn and grow, spiritually. I’m content to have what God has given me, to live my life to the fullest and do the best I can, here on earth.
One of my friend’s family did asks me about CI. I advises them about the risk. They went ahead anyway. Boom, the child at four years old has partial nerve damage on one side of neck and cannot turn their had to one side and CI did not work at all. I feel sorry for them. The child is now eight and is total deafness.
I am amazing that you did the done homework before I met anyone who is parent and want implant their child due their comfort function. I could not images that what they want when their child is growing up and what?
My questions to the parents if the child become adult that will have insurance aside ready for re-mapping which costs 5,000 to 10,000 dollars without the insurance. They needs to take a shots and so on. Many parents does not think what happen in the future. Do the parents have time who parents are the busiest such as higher living and know what I am saying? Again, the sign language is a simple learn and does not have to waste the time how to say one word for cue.
Speaking about English… I have no sight idea why one person mention that important then why the heck do we have baby sign at the first place.
I am so happy for you and you are in the best process for child… mean that your child is going brighter than where we are standing right now. Again, you are the great and fine example… Again, I know I say repeat but we need aware and what is happen to child for next 5 to 10 years. What is going happen to parents position may change in few years later become easier or busy. When they go to school and got home then only have 3 to 4 hours to have family quality time… while the speech cue is not a quality time.. its like 24/7 educating the child. What the missing is happiness “mortally” in their growing up as family and not the doctor.
I am severly deaf and was born deaf. Some of my family members are deaf, but most of them are hearing. My hearing family members accepts me for being deaf and for being who I am. I am happy to be deaf and I don’t consider myself a “third class” citizen. I have a normal life being deaf and I have a successful career. I have worn hearing aids over the years and they work well for me. I went to a deaf school and learned to communicate in bilingualism. I am fluent in both American Sign Language and English. I had auditory and speech training in school with the speech teachers and audiologists up until I was in middle school. I was also taught to be a part of both worlds. The deaf world and the hearing world. I am not against people who wear cochlear implants, however the cons of cochlear implants is that it takes years and years and years of auditory and speech training after the surgery is performed. There are several risks once the cochlear implant procedures are done. If you claim don’t work for you or your child, you cannot opt out. I do not agree with healthcare professionals and/or parents forcing a deaf baby to have cochlear implants. I would rather have the child grow up and make the decision themselves whether they would prefer to live with or without hearing aids or cochlear implants. I am tired of healthcare professionals making decisions for you and forcing deaf children to get cochlear implants. Cochlear implants does not restore normal hearing and they are not a cure for hearing loss. I am also sick of the educational system forcing deaf children with cochlear implants to mainstream in public schools. I am sick of the state legislatures and the departments of education defunding or closing deaf school. Deaf people are not lab rats or “third class” citizens.
Thank you, thank you for simply and eloquently communicating how perfect your son is. Because he is! And how exposing him to unnecessary medical procedures would be detrimental when your family has been given the gift to be bicultural/bilingual. ❤️
I am the parent of two sons who both have bilateral implants and I feel compelled to add to this discussion.
First of all, I agree that false information should not be included in any post, please get your facts straight before posting.
My son’s were born with severe sensory neural hearing loss and used hearing aids for 13-14 years. We have been through ear molds, FM systems in school, speech therapy, teacher training, coach’s meetings, lifeguard alerts, and accommodations of various sorts.
As young teenagers, their hearing began to change and after more than 13 years of being a “hearing aid” family…..never even considering CI’s, we realized that for our sons to reach their full potential that a CI was an options worth pursuing. After the first operation that my older son went through and his adjustment to his new CI, it became obvious that his younger brother should have the implant as well. The decision to have the second implant was also the right thing to do for both boys.
They have prospered with their speech and language and are both now successfully in College. My older son is a Theater Major and is often acting in plays and being a director. He has found no limitation on stage with this hearing loss. My younger son is a science major and hopes to one day be a CI surgeon…..wanting to give back.
Both boys have said that having the CI’s has been the most positive significant impact of their life and education. My older son was on a conference panel with other kids who have hearing loss and someone from the audience asked my son if he ever regretted getting his CI’s. His answer was that it was the best thing that has ever happened to him.
I could go on and on about the success that my sons have had with their CI’s….but let me just close with saying that we all make decisions based on our own beliefs and our own family situations and no one should be criticizing others or putting down what one family might do. I would only hope that your children find success with whatever choices you make for your children. I for one have been through 21 years of hearing loss and used many different approaches, and CI’s have been a very positive choice for our children and family.
I was born deaf and they didnt find out I was deaf til I was 8 months old … Went to four deaf oral schools and private all girls school and I turned out fine. Thanks to my mama. She sat down with me everyday to read to me. She would take pictures and put in the book (that was her scrapbook) and wrote down what the picture is about. EX: A picture of camper. She wrote: This is our camper. We go on trips in the camper. She made sure I read everyday. By the time I entered private school the school didn’t think I would last a month. I survived a year and half with hearing peers and left the school due to problems with ADA (that was before the ADA law passed). I landed a good job in the Escrow Company and worked for 9 years. All those years my co-workers would always forget I am DEAF! I speak and use ASL frequently.
When I was a teen, my papa wanted me to get a CI and seeing three of my friends who got CI in their teen days completely failed them, I told my papa, I was born deaf for a reason!
Am so glad you did all the research and stuff. But I never knew that once you get a CI and you can’t go back to hearing aids (though I have quit wearing hearing aids)
Your son is so precious!
I am very glad you recognize all the dangers that your son would have had to go theu and yes it is correct the sounds is not the same as normal hearing. Hearing aids are good too. My personal feeling is it should be up to your son to decide if this is for him when he’s older or not. The world does not end when he’s deaf. I am retired deaf person. I had held a good paying job for years. It is possible to live and enjoy the life as a deaf person.
yes! mum find out that i was deaf when i was 6 months old. they said to my parents about the implant mum and dad was unsure about it. when my dad went in the waiting room this 65 yr old woman sat beside him and they were talking away and it turned out that the woman was deaf and had a implant my dad was ever so shocked! i had my implant since i was two! i am now 18yrs old and can hear perfect and speak cleary. my opoinion is its better having it done in a young age.
Hi.
I’m Sherryl. I was born deaf due to my mother had measles during her pregancy with me. I worn hearing aids since I was a year old. I went to regular mainstream disability school till my parents got divorced n moved. I went to a school for the deaf for 10 years. I have been using American sign languages all my entired life but my mother taught me how to talk. Now I have two cochlear implants, right 12 yrsago and left almost 3 years ago since my hearing aids were no longer to hear very well than I used to and I decided to get it done. It’s working really great and it better than old hearing aids. It is your decisions to want for best for your son. I wish u a luck. My pleasure To share with u.
I would ask that you provide links/resources for the information that your provided in this post. The unfortunate thing about the internet is that there is no policing of information. I would hate for another parent to read this post and make a decision not to implant their child when this is filled with inaccuracies and misinformation (as are the comments, unfortunately).
While I respect your right to make a decision for your child, I want to make sure that you are doing so with ACCURATE information.
An MRI is not required for a CI surgery – I know, as my son was implanted at eight months of age with bilateral cochlear implants. He had one un-sedated CT scan at six months of age. Yes, it is possible to get the imaging needed in one very quick, non-sedated appointment.
The electrode array does not destroy the cochlea – this is highly inaccurate. In fact, CI manufacturers are doing more and more to make sure that the insertion of the array doesn’t even damage the recipients residual hearing, let along “destroy” the cochlea. I find this research interesting: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2946455/
I do agree that giving a child is a decision not to be taken lightly. If a parent does not follow through with making sure that their child receives therapy and programming (mapping), then the child will not have success with the CI – that is why CI Programs use a “team” approach and fully evaluate the family’s commitment to the CI prior to the surgery taking place. So while there is no “guarantee”, a team – which includes the parents – knows if a child will likely have a successful outcome prior to ever doing the surgery. Things like anatomy (known through a CT Scan), family involvement (through interaction and interviewing the family) and reason for the hearing loss (genetic factors/testing) will tell you the likelihood of your child learning to listen and speak as well as his hearing peers. We knew that our son had an excellent chance at being an excellent CI user from these tests – and he is!
Over the holidays, our family got together with my college roommates, as we do each year. It’s always fun to see each other, and to see how our kids have grown. We have gone from four couples, to now, 15 years later, four families with ten children in total. My son, who is deaf and wears bilateral cochlear implants, happens to be the third of five children born within a three month period – we were all pregnant at the same time, one with twins! Anyway, this Christmas, as I sat talking with my college friends, I had a little moment where I realized just how special it is that my son is able to run around with these other four kids, get into trouble, yell, scream, and TALK with them. They played for hours together. This would not have been possible without the cochlear implants. Period.
Drew’s Mom recently posted…Amusement Parks, Roller Coasters and Cochlear Implants, Oh My!
Doctors are not gods.
I’ve seen few successful CI’s however in the end they returned to the deaf community because in the end, they felt that they don’t really belong. You will never be 100% hearing and you will miss out on many things. I highly doubt that you can hear your name amid surrounding noises.
Also these “successful” CIs usually have limited social skills and are usually naive to life. The reasons? They spend their childhood in speech therapy 3-5 days a week while they should be outside playing with peers. By socializing early in life they develop many of skills you use into adulthood.
And I’ve seen way more failed CI’s which then the deaf community and schools have to deal with them and help them to be “normal” again.
The writer explained her reasoning which i agree. You’ll have to live with your decision and you can never cure the scar once its there.
There are actual deformed faces from surgical errors – is it worth the risks? Doctors hide failed CIs and continue to practice on your own child. We arent guiena pigs, thank you.
Doctors are not gods!
You only see failures because those are the people who return to the Deaf community. Go to an oral school or AG Bell and meet all the oral deaf kids and adults who LOVE their CIs and only use spoken language. They are FAR more numerous than ASL users.
Melissa Jensen recently posted…BLAH BLAH BLAH!!!!
I love this article!! It is so inspired! Thanks.
We would like to hear from the hearing parents about their hardships with their deaf children with CIs…their trails and tribulations, if you will. I wonder are they fear to spill their words out toward their feelings?
My blog is both the good and the bad. Feel free to look at it. I am more than willing to talk about the bad with the good.
http://www.misskatsmom.blogspot.com
Melissa Jensen recently posted…BLAH BLAH BLAH!!!!
Thank you Melissa for sharing your blog. When I find my way out of the comments, I will make a point to stop by. I hope you will continue to visit here as well.
I advocate parents being able to make decisions for their own children without others judging those decisions. What bothers me, however, is someone who does NOT have a CI is telling others just what a CI entails and listing all the negative aspects (from the perspective of someone with no experience, no less).
There are several (ok, MANY) misrepresentations of the CI process in this article, and some have already pointed those out. I won’t go there. Suffice it to say that the main focus of this article should have been along the lines of “This is my child and I am the parent and I have a right to make a decision without having to defend it. Please respect that!” Instead, this turned into an Anti-CI post with input from readers supporting or disagreeing with it. I was told it was a fair/balanced post, but it isn’t. Because there is not ONE positive attribute listed about a CI.
This is not “elective brain surgery.” The brain is not touched. The auditory stem is not touched. The only thing that is affected is the canal that carries sound to the cochlea and the cochlea itself. It stops there. The inner implant is on the OUTSIDE of the skull, and the resulting “flat disc” mentioned in the article varies depending on the individual surgeon’s skill. I have seen bumps and I have seen nothing, everyone is different. Technology changes all the time and today’s availability far surpasses that from 20 years ago, right down to the sound/usability quality.
That said, the technology is NOT perfect, but it far exceeds what a hearing aid can provide, and new advances greatly reduce any risk. Was your son circumcised? That surgery is as much of a risk as a CI. It’s “cosmetic” and “unnecessary” and yet millions of Americans make it into a debate much like the CI debate. Bottom line is, we would all do good to simply respect a parent’s decision for their child, regardless of our own opinions and beliefs, and every parent should be allowed the respect of making such decisions without feeling the need to defend those decisions, justify them, or explain them in detail. CIs are not for every child/family. Children across the globe do equally as well in the long run regardless of what kind of technology they use or don’t use, regardless of communication mode, regardless of age of decision. The key to success for any child is NOT in the CI/HA/nothing decision or the Sign Language/Spoken Language decision, but in the parent’s choice to love their child and accept them for who they are, boost their identity, and ensure language acquisition for communication and relationship development. Nothing else matters…assistance, technology, mode, policy, extended family/doctor/deaf community input, etc. It’s a personal, individual, immediate family decision the parents have a right to make in peace depending on their own assessment of their own family unit. There is no “one-size-fits-all, textbook style” answer to any one family that will be perfect for another.
I have a CI. I wish I had it when I was a very young child. I love mine. Surgery was a piece of cake, I do not have word recognition, I missed out on much in my childhood (but it was a much different time than today). My husband didn’t do as well with his surgical experience with his CI. Everyone is different. There is a risk in every decision, no matter what.
I have a child born with club foot. We were faced with whether to opt for surgery or not. I often face those who are anti-CI judging me for my own adult decision to be implanted based on “God made you that way, why would you change it?” by asking them why they are so supportive of my son’s club foot surgery (God made him that way, why didn’t we just let it be?), which is basically the same thing. We all define situations differently. This particular family embraced their child as is and should be commended and applauded for that. Their decision as to how to embrace that may not be the same path another family will take for their child, but that’s ok. We are all created different and unique and that’s the beauty of the world.
I have a CI got it at age 42. I lost my hearing at age 32. I wore hearing aids all my life with great sucess with hearing pretty good. I’m not one for implanting babies or children. In mant cases the baby can’t tell you that sounds are right or wrong. As an adult who has heard sounds before I was able to get mapping that worked. I can say that sound not right or a sound was unbearable due to it being way too loud. Babies can’t share this need.
One of my biggest concerns is a baby’s inability to communicate their hurts and discomforts. I am all for adolescents, teens, adults, etc making informed decisions. Thank you for your comment.
I wish I had time to read all the comments but it’s probably just as well that I’m not able to as it will probably push some buttons. Wanted to say BRAVO! There is no doubt in my mind that your son will succeed and grow up to be successful as long as you guys stick to your guns. I agree, you should not be criticized for your decision AND I should not be criticized for the decision I made or that my folks made. I have bilateral implants and was one of the first 50 in the world to receive the implants (way back in early 80s). I speak English and I also sign fluent ASL. I use both depending on the situation. PEOPLE!!!! The point is, there is not single way to do something. There are several avenues to take in dealing with deafness and no single avenue is THEE one. This family has decided that this method is the best way to adjust to this “small difference”. All the high faluting professionals that claim to know what is best for each and every child: You’re wrong. You do not know what is best. If you are a parent yourself then you should understand that every parent who is actively involved in their child(rens) life, they do know what is best. I also am fed up with meeting Deaf people who tell me that I’m not Deaf and that I don’t accept my deafness. You’re just flat out wrong. You don’t know me and quit judging me before you even know anything about me. I have fought for families that wanted the implant for their child and I have fought for Deaf people who did not want it. I stand by my belief that the Cochlear Implant is not for everyone. It just depends on your lifestyle and your preferences. (I’d also like to add that even with the most powerful hearing aides before CI, I could not hear a darn thing. My cochlea was already ‘non-functional’ so the ‘permanent’ damage was mute point.)
Thank you for sharing your perspective as a hearing mother of a deaf child, Melanie.
After reading through all these comments, I am mainly struck by how convinced everyone is that their unique perspectives and their experiences means their opinions or conclusions are the most correct ones. This is especially true of “success stories” – they feel it incumbent upon themselves to promote their upbringing as THE RIGHT ONE.
I saw some inaccuracies in this post, just as I’ve seen inaccuracies in many of the comments. I also saw some people who are sharing here slanted information and/or only what will support their arguments, when elsewhere I’ve seen them share information that would offer a much more nuanced portrayal of their situations (i.e. a certain mother has not admitted here that her child has a learning disability that is interfering with her ability to progress with language; and another person not sharing that she is a rabid anti-ASL, oral-only advocate with connections to the CI industry and has a vested interest in defending this technology’s image).
Last year, I joined a wide range of Facebook groups in order to learn more about all the different perspectives entangled in this debate – ranging from Deafhood to CI parent groups. I saw a lot, learned a lot, ended up disgusted all around and quit (this is the first CI-related thing I’ve commented on in a long time) – but what I took away from it was that the single biggest failing most people have is that they take their personal experience (or what they’ve seen/heard firsthand) and assume that applies indiscriminately to the whole. The things they did right, everyone else should do. The things they did wrong, nobody else should do. What worked for their child will work for other children. What didn’t work for their child won’t work for other children. Never mind the outrageous stereotypes and assumptions that run rampant about what deaf people can and can’t do in any given circumstance. This leads to extremely flawed, skewed, biased information that does nobody any benefit.
Lesson: Social media and the Internet has offered us a wonderful way to hear/see far, far more stories than we would on our own and learn from them all combined. It’s also a very dangerous tool when approached with a narrow, “I AM RIGHT” mindset that is not open to absorbing the FULL range of experiences, including awesome “success” stories of CI, bilingualism and ASL approaches ranging all the way to horror stories of when any chosen approach utterly failed the child and family. Every approach works when it fits. Every approach fails when it doesn’t fit.
Doctors and medical professionals may be experts in their fields, but they are NOT experts when it comes to your child or what approach will work best for your family, or, once implemented, whether that approach is working as well as it should. They don’t go home with you every day. They don’t feed your child, change his diaper, clothe him, play with him outside, talk with him morning, noon and night. Most of them don’t see their patients 20 years down the road. Most of them don’t interact with a wide range of deaf people OUTSIDE the office, see how they manage life, love and work. They sit in their office and parrot information and data and research that are supported by a very skewed, biased system of research funding. They don’t tell you everything. This is already an endemic problem in the US health care system; is it any surprise that it infects the hearing health care portion as well? I don’t come at this from a position of skepticism about CIs (I have friends with CIs and have seen it when it works). I come at this from a position of skepticism about the for-profit US health care system as a WHOLE. It is abysmally flawed and broken, and not deserving of the trust far too many of us put in it. Especially parents.
Bottom line: Parents know their children and situations best. Let them do their research and make their decisions. Some won’t do their research, or won’t do it well or interpret it badly. Fine. It’s a free country. Others will research exhaustively and come up with a choice they feel best for their families but that others won’t agree with, but that’s because the others DON’T KNOW ALL THE FACTORS. This much I learned from my experience last year. People only tell you what they want you to know about themselves and will leave out critical pieces of information.
In conclusion, thank you to everyone who shared a segment of their individual stories. You all help build a fuller picture.
Thank you Tara for your thoughtful and carefully worded comment. There are so many points to which I agree, especially on the US healthcare concerns and I would also include the overall US educational system.
I think you brought up some good points, but also, one thing I have seen is that sometimes the deaf community becomes so strong that if a child or adult wants a CI, they are treated badly for wanting it. That is not right either.
And to piggy back on that… my son may want to take an ASL class soon. Do you know what’s going to happen there? He’s going to be told that cochlear implants are “bad,” and that he is not deaf enough to be a part of deaf culture because he has them. How do I know this? Because my hearing daughter is in an ASL class this year, and that’s the information she’s been given as part of the curriculum. I don’t find a culture that would shun a person who is deaf, but not “the right kind of deaf” to be attractive.
Yooo Melanie,
First of all, I LOVE YOUR SON’s out fit! Handsome Deaf boy! You and I have very much same in taste in dressing our Deaf babies 🙂
Secondly, Let me introduce myself my name is Jeffrey DuPree and I am a fifth generation father of Deaf sons. My sons, Mason Lee and Gaius Lee, both were born profoundly Deaf from Deafhood families for 6 generations. I applaud your article!
I do not know if you ever had experience of harassment from audiologist, doctors, or peers that supported cochlear implant? For my both sons, they were much of interested in testing our sons’ ears. They called and called bothering us for more testing whether Gaius Lee is already identified as Deaf baby with their so called offensive result “Failed” hearing tests. He passed for humanity, three times.
That was enough for us because Deaf genes are strong in my family side and I have two Deaf boys. The Deaf genes are strong in male that my father, my uncles, cousins, my sons, and me have. The female family members are the carrier and possibly can born Deaf sons.
Unfortunately that kind of Cochlear Implant and oralism brainwashing has infiltrated one of my sons, my first born, Mason Lee. He had his cochlear implant surgery done in deception, secret and without Judge’s permission by the hearing mother, since we are yet divorced. He had his implant day after his 4th birthday, (presumably it was A GIFT from their audist family who in a mission to desecrate Mason Lee’s Deaf families and tear us apart because he now is a hearing bionic child and shouldn’t be among with his proud Deaf centered family who loves Mason Lee thousandth forth)
With that autistic gift, He suffered and hospitalized for 8 days with several complications. It could lead to his death and luckily for us, that it did not. It was done also in evil way, we, Deaf family never was notified about his ordeal or situation at the hospital. Remember it was done in secret behind my back, our lawyers back, and judge did unaware of this. His implantation was forced and unjustified. He, at newly age 4 fought the nurses and refused but he was overpowered and oppressed by drugs.
When I received and read the whole hospital records after with the evil audistic smile cochlear implant reveal from Mason Lee’s mother in the court, I CRIED for his pain and suffering and his identity. He was overpowered and wondered where his daddy at? I will protect him from them at ANY COST if I ever knew it was coming. COCHLEAR IMPLANT SUPPORTERS DO LIES AND AB– USES DEAF CHILDREN’S RIGHTS. PARENT CHOICES IS A LIE! Deaf parents do not have CHOICE because cochlear implant OPPRESS their rights too.
THANK YOU FOR STANDING UP TO COCHLEAR IMPLANT AND SAY NO!!!! Despite how people look at you, HE IS YOUR LOVING DEAF CHILD! Again, as father, your son is very cute and adorable.
Jeffrey
I apologize there was a typo from spell check on my mac. to fix the typo from autistic to audistic. (just had it to learn the word) sorry about the typo!
I am so sorry for your experience. I can’t imagine going through such a difficult time. Thank you for sharing.
I appreciate this blog and was horrified at those who jumped on the basis of one child rather than the majority of Deaf children with an IQ of average and above. I am deaf and grew up in a deaf school with about 70% of the students who is mentally retarded and of below average in intelligence based solely of people who thinks its a school for the students who failed to meet the needs in a hearing society. I ended up suffering and finally picked up on my own. I’ve seen many students with CI are pretty much behind and is usually placed in lesser challenging classes. It was such a drag for students like me who had no trouble in the real world but because of hearing people’s doubts in our successes, we were herded into lesser quality of education.
Oh, by the way, I use ASL, deaf in both ears and chose not to speak as I find it boring. Its my personal choice. 😉
LOL – My husband has a wonderful voice and chooses not to speak too. To each their own. I too have grave concerns about the Education of Deaf children in America and am certain that your experience is norm. Unfortunately it isn’t only the Deaf children. It’s all children who don’t learn in traditional methods, my older (hearing) son has Dyslexia and I can 100% guarantee that our fight for his education will be 10x as hard as it is for the Deaf baby.
Bravo and thank u
And don’t pay no never mind to the folks who show up saying u have inaccuracies – they just trying to discredit and distort
It is a form of brain surgery – they r VERY much trying to alter the brain and ci have destroyed the remaining hair
And yes there is lots of prodding and poking
And yes it is totally bs that it must be done as soon as possible.
The main point of ur post is the propaganda – all the glossy photos an tear jerking video clips of the miracle of hearing parents voice for the first time
Journalistic inter gritty dictates that if folks r gonna report on CI they must include the recalls lawsuits failures shocks complications and DEATHS. But they never do so they. Nope only time u see anything about CI failures is in the business pages when the stock drops
They don’t cover the kids tears. Yes Melissa Jensen we remember when miss kat was screaming and refusing to wear her 2nd implant
They don’t cover how some parents have been physically aggressive to get their child to wear the CI all their waking hours
They don’t cover the pain nor the costs (they r way overpriced for something that works so u reliably and inconsistently which such a wide variety of results)
So kudos to u for accepting ur boy as he id and being committed to giving him language and unconditional love
For the folks who think its ok to ask or tell folks to get CI – not cool. Just cuz u reject folks being Deaf don’t mean u have a right to impose your pre-judice on to our being
Everybody – most especially the folks who have CI and/or parents who have implanted their children should be doing a mighty shout out against the propaganda. You all know that the media ain’t there when your child lags behind or tries to break their ci or when they are skipped over on the playing field. You know the CI are not cure alls and not quick fixed an every time you allow the media to portray them as such you / your child faces a harder future.
The truth and nothing but it
Folks pls see the FDA page for the long lists of risks with CI.
Thank u for sharing ur strength and love w us Melanie. U have an adorable baby. Enjoy every minute. They go by so fast
Peace
Patti
Thank you Patti. I have read all 155 comments and you are 100% right. I was addressing the propaganda (nice choice of words) and the impression given to the uninformed hearing community. I have seen first hand in classrooms and doctor’s offices the difficulty of learning to use a CI. Thank you for taking time to comment.
To Alanna Kilroy,
I am a CODA, my mother is Deaf and is the Director of Field Services at Helen Keller National Center. As hearing individual with no hearing loss whatsoever, I must say I am not “normal.” You commonly referred to “normal hearing people/experiences.” I respect your decision and I am glad you found a way to live your life. I ask you simply not to identify hearing people as “normal.” By doing so you are saying my mother is NOT normal. Being “hearing” does not make you a “normal” person. Being Deaf does not make you “not normal.” I wish you the best in your life and I KNOW you can reach your dreams and goals! I know this because you are a human, deaf or hearing, normal or not. I hope you find the bright love and acceptance in the Deaf community one day. It is a beautiful place to be.
Hey this is Nicci. I’m also deaf. I had a cochlear implant for eight years but I don’t wear it anymore. Now I’m proud to be deaf. Of course I’m still use my american sign language because it’s easier to communication. I have experience to use my voice as speech, and cued speech. I don’t like idea about cued speech because it’s does not help me better for write grammar and vocabulary. I have been try to understand cue speech for long time but I never understand at all that’s why I miss a lot. My mom is the only one decide want me go to cued speech when I was three years old. Guess what? I never pay attention cued speech. I am more interest to understand american sign language because I am more understand the words better. I’m still learning to write grammar. I will never stop learn. My point is I am really sad that my parents listen to my friend’s mother and audiology suggest them to think about me to get cochlear implant. Also my teachers advice my parents to think about cued speech too. I just wish my parents listen to me as I am their own deaf daughter. They are missing me deaf. They are just don’t accept thing happen me future because I am deaf. When I did wear my cochlear implant, I noticed my parents like to hear my voice than use sign language. It’s does not make me feel better. Now I finally stop wear my cochlear implant when I was 18, my parents was so frustrating me that I don’t wear my cochlear implant until they are realize that they don’t communication me that much. Now they have to accept to communication with me is to use american sign language. I regrets to make my decison for cochlear implant but now I understand why I miss a lot and learn a lot about my deaf culture. Cochlear implant or not, it is still hard to be friend with hearing. Trust me I know. I have a lot deaf friends and few hearing friends. I got a job. I am more happy. I don’t know what other people think of me. I just accept who I am.
When I read your story about your deaf son, I am surprise that you make the right decision about your son. Not many parents accept their children to be deaf. I do understand most parents worry about “out of the world”. (own live apt or house, job, and everything) To be honest most of my deaf friends without cochlear implant, they do have a wonderful life, married, job and house. Deaf people have a different lifestyle. Nothing wrong with that. Thank you for share with us. I do enjoy read your blog. 🙂
Thank you Nicci for taking the time to share your feelings. I have many friends who also had CI’s and now choose not to use them. I am glad that you have found a welcoming place in the Deaf community.
Kudos to you, Mom, for researching the many options for your Deaf child. If you stay this involved in your child’s life then he will certainly excel in whatever he chooses to do.
Becky- your comments are filled with an audist attitude. It is your preconceived notion of what you think Deaf people without CIs can do that make me happy you are no longer in the transliterating field. You said they are in careers you “never expected they could handle.” Thank goodness the author of this article has set the bar so much higher for her son than you did for your students. Cueing is certainly a tool that can be used but it is not a language. This mother has chosen to give her child a bilingual/bicultural life, and I think that’s fantastic. I have a Deaf sister and a plethora of Deaf friends whose language skills put hearing peoples’ to shame. Please stop labeling this community at a “third grade reading level.” It is misguided and certainly a case by case basis.
I mean I don’t care what people think of me. I just accept who I am. I have a hearing boyfriend who know how to use sign language. He live with his deaf parents. I am very lucky to have him now. He teach me a lot. And he is trying to make my parents to understand about me. That’s all for me saying but thank you share with us again. 🙂
Yes ! I have one and it’s the best gift I’ve ever received !
It’s interesting that people who choose not to implant their child feel they are pressured to implant while at the same time, those of us who have children with cochlear implants are chastised by people like you. It’s a truly ridiculous situation. We all have children who have a hearing loss (or are people with a hearing loss) and are all trying our best to do what we think is right. I think it’s very unfortunate that my child was born with a “disability” that comes embedded with in-fighting. I don’t care if you chose to sign. I don’t see why you should care if I chose to give my child a cochlear implant. I do care though when some random person infers or blatantly tells me that I made a bad choice, or when I come across a blog entry that tells me that. And just for the record, I knew very well that having a surgery for a cochlear implant did not magically fix my son’s hearing. I was well aware that there would be work involved and that he would still be deaf. I wonder if you could find someone who watched a YouTube video of an activation and went straight to a hospital for surgery without doing any other investigation. I doubt it. Your post makes it sound like those who choose cochlear implants are quite ignorant, which is totally untrue. Also for the record, although my son got his first cochlear implant at almost 3 years old (having been profoundly deaf since birth), his receptive and expressive language were within average range by the time he started Kindergarten in a mainstream classroom. That type of success is not a given, but neither is failure, and I’ve heard a lot more stories similar to mine than I have utter failures. Again, why the polarization on this? It’s baffling to me.
Actually Ruth, Ignorance is the key to the matter, and I know first hand having tried to establish a Library for the Deaf much alike the NLS or the National Library Service for the Blind and Physically Handicapped (founded in 1931).
The blog author here is right, you have effectively bought version 1.0 where version 2.0 and beyond are in development. The deaf community is essentially right in that you have put more emphasis on hearing than on understanding. I can’t tell you how many deaf people have related their frustration of years and years of work and training on how to pronounce a word. Hearing people are famous for knowing how to pronounce and not how to spell. I can tell you that the ability to pronounce a word has absolutely nothing to do with understanding the meaning of a word.
In other words, the obsession with hearing things has substituted the obsession with understanding things… not understanding the word, but the meaning behind the word. The so-called hearing and oralist worlds have put unimaginable pressure and value upon “hearing” something while our world is gradually degenerating into an abyss of nothing (check the news if you disagree with me). Hearing has absolutely nothing to do with intelligence, except… of course, that the ability to comprehend, to figure out these things is the key to intelligence. Hearing contributes? Of course, but that is the fallacy: that hearing is an end into itself.
If you’ve seen my other post here (and many elsewhere) you will see that intelligence does not have a set of parameters and that the human mind is amazingly malleable and adaptable. Therefore the problem is plain: an infatuation with the singular.
Are you seriously telling me that I am mistaken, and that my son is actually only hearing things, not understanding them? Please note that I said his expressive AND expressive language were in the average range by Kindergarten. By 4th grade, he had a reading COMPREHENSION level above 12th grade. We signed with him for a year before getting a cochlear implant. In that year, he learned so quickly that I could not keep up to teach him. Language is his forte. It was always going to be. He was built by God with a gift to communicate with as many people as possible, and his cochlear implants help with that whether you or anyone else militantly in Deaf culture believe it. I often (not from you, but from others) see mention that God makes certain people deaf and that we should not tamper with that. It’s true that God wires us a certain way, but that doesn’t mean He doesn’t want us to change in any way. Cochlear implants do not take away from God’s plans. No one can interfere with God’s plans.
Furthermore, what does you trying to establish a library have to do with my supposed ignorance? For one thing, you seem to be arguing with me when I never said one bad thing about people who choose ASL over cochlear implants (and I never will). For another, your argument points do not connect with what I said. Also, of course there will be improvements in cochlear implants, or even totally new technology that makes them obsolete. If I didn’t think that was true, I might not have chosen it. Why would anyone invest so much time, worry, expense, etc into a technology that showed no promise of growth?
Typo: That should say expressive AND receptive language. Not expressive and expressive. I’m sure someone will pounce on THAT as further proof of my obsession with my son producing sounds. lol
He is adorable! 🙂
I had no idea! Thank you for the information and sharing your decision and thoughts. It’s too bad people feel they can question your choice as a parent and family. What a precious little guy you have!!
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I would just say that I think it is important to note the English skills of many of the anti-CI Deaf adults when considering their opinion.
Really? We HAVE to have English skills test passed here, mom to a deaf kid? I don’t see a requirement, didn’t you? Anyone? There is NO rule to require grammatical skills to a perfection here. All comments are expected to have typos, unedited drafts, etc. so don’t assume we all are against CI. Who say I am against CI? I do not support a parent force a decision for a child who has no saying in the decision making. It is like abusing the child. I prefer a child to decide on their own how to use devices on her/his body. Sign language is FREE then and still FREE to use. Even a honors program student can use ASL with advanced grammatical skills!
Don’t judge us based on our unedited English skills in comments. Be careful what you say.
And yes, I am already aware I have errors in my grammatical skills written on the previous comment. It doesn’t give you the right to assume we are the developmental disabled people here while CI users are automatically the most intelligent people on the Earth! I need to remind you that ALL are varied. NONE are above one other. Even I knew many hearing individuals could not even spell the words correctly. If I am someone with lousy English skills here, then how did I manage to graduate from University of Phoenix with an excellent GPA? I would have failed every term paper if my English skills were lousy. So please don’t insult us.
what do you say about the English skills of many hearing people in our society? Many of those Deaf adults with poor English reading and writing skills are because they started out as an oral-English-only. Look up critical period; there’s a period in which an opportunity to learn language (not speech which is a totally different skill) closes down as one gets older.
There’s a lot of strong opinions on both sides of the debate. Here’s my $.02 to add.
I was born completely deaf and in the same year the FDA first approved the CI for kids. My parents, who are both hearing turned down the CI option- their rationale was that I wasn’t broken and didn’t need to be fixed. They took ASL classes and the rest of my extended family all learned at least some basic sign. My grandma actually was an interpreter for about 5 years- she was that proficient. So I had sign language as my first language from practically day 1. I had pre-school in both a deaf program and a hearing program with an interpreter. It wasn’t until I was about 3 that my parents started doing research again about the CI. they went to a dozen conferences, talked to parents, doctors and all that. they finally went ahead with the CI surgery when I was 4. They kept using ASL and added spoken/written English as a second language. I grew up with ASL as a first language and learned how to speak very fluently- lots of hard work, but I feel it was worth it. I got sent to deaf camps and events growing up, and both parents continue to use sign to this day. I had an interpreter in classes from K- graduation. I graduated from a mainstream high school. I got accepted to a large state university in my state. I believe that people are on the right track with he bilingual-bicultural approach. Even though I have a CI, i still view myself as a Deaf person and am accepted in the deaf community. My family accept that I am deaf and make an effort to sign with me as much as possible, even though I understand their voices very well. At the same time, I function very well in the hearing world with my speech and being able to hear and understand English.
My parents didn’t expect the CI to be a cure. they knew it would be hard work- and hearing aids didn’t work for me at all. I’m glad things turned out the way they did. I function very well with both communities and I am able to transition seamlessly between both worlds.
So, if your choice is no not have the CI- that’s totally fine. Your child will be just fine! If your choice is to give your child a CI- I strongly emphasize a bilingual approach. Don’t be limited to just one way. Your child will be fine regardless whether theres a CI or not. Communication with your child is the most important thing- in whatever form. The CI is like a tool in a toolbox- along with English and ASL, a variety of tools are best for certain situations! All doors will open with good tools.
Thank you John for taking the time to tell your story and I agree with their needing to be a variety of tools. We are already implementing many of them.
I think you are a great mom and only you know what is right for your family. God has a reason for everything.. I’m sure he has a plan. Stay strong on your decision.
Sunshine
What a fitting name!
Your thoughtful article and research is to be commended across the board! This kind of critical thinking is something we are supposed to do, especially as parents.
I am an individual who became deaf overnight before I became 8 years of age in 1972. There was no such technology then, of course, but when the CI came out about 20 years I said No. I’d say no today.
The problem, in a nutshell, is that the CI method is being sold as a solution… is being sold as something that makes you “hearing”. This is a falsehood deserving of a stronger term.
I have enough trouble in the deaf community explaining that deaf means “of various hearing levels” (an inclusive term). The deaf community is horribly fractured among so many lines that it is unfathomable. A degree here, a degree there, what difference does it make?
The flip side is identical. A person with a CI is now automatically hearing… or is he/she? Is it a matter of degrees? Absolutely, and therefore… by my definition, the person is still deaf.
There are two things I encourage people to look at: (1) the NFB or the National Federation of the Blind where they say that they consider all their members as Blind without regard to visual acuity. The reason for this, as explained to me by the president of the NFB’s Deaf-Blind Division, is to be non-discriminatory. If you look at the DOMA or the Defense Of Marriage Act, the problems pointed out to the Supreme Court was simple: two classes of people is discriminatory.
I am not saying that people cannot self-identify as they please, I am saying as a political bloc, we are all deaf; where degree and means are irrelevant to the essence of the matter.
A Cochlear Implant is a tool, a means, a way of getting some hearing and it is not something to be outlawed, but rather to be taken carefully and thoughtfully, exactly as you have. The problem is that far too many people are influenced by the singular of being able to hear. So much so that falsehoods are propagated.
I will single out Carl White at the University of Utah (http://www.infanthearing.org/index.html) whose past websites (that I cannot find right now) had a four point initial presentation among which included this tidbit: “If your child cannot hear, he/she will be limited to a 4th grade reading level.” If anyone bothers to ask any Journalism professor, they would find that the average reading level in America (without regard to anything) is about 4th grade.
Then there is an article (actually one of several) at Popular Science magazine that has looked at the science of CI, and an article in 2012 (I can’t recall off the top of my head here which month) talked about the powers of a CI. In comparative terms, a CI gives you a certain range of hearing that can be measured in “keys” much like the keys on a piano with the range of sounds. Modern CI’s, while constantly improving, do not provide anywhere near the 88 keys of sound you will find on a baby grand piano. My question, therefore, is this: would you buy a baby grand piano that only had, say 34 of 88 keys working? And moreover, would you pay some $34 Grand (or so) to buy it knowing that that is its maximum effective range?
To repeat myself, deaf means of various hearing levels: if you have trouble hearing then you have a problem we all have when we cannot hear. Medical and Magical solutions do not change that fact and we are a ways away from being able to replicate a nerve (where hearing is a nerve sensory receptor).
Alec, Thank you for your response. I find the part about blindness absolutely fascinating and a such a beautiful way to explain their community. I feel the same way about the Deaf people in my life. It really comes down to their own choice in identity.
Melaine
I should return the favor of a conversation, given that a true conversation is a two-way street. I’ve my points and I’ve my faults but I will add this:
I have only recently (within the last year) been prescribed glasses as a full-time solution (I’ve just turned 50). For the previous four or five years I have relied on “reading glasses” of various magnifications. Starting out at 1.0 and working my way up to something like 2.5 I eventually had to have glasses for both reading and casual use.
I am a building professional and I read and interpret blueprints in order to build or remodel structures. If, for any reason, my glasses break, if they are lost or misplaced I have a dilemma: I cannot read the fine print found on a typical blueprint!
As a practical matter, when I cannot see or read the blueprints due to the lack of visual means: I am blind. I mean, I can see you and all that, but if I cannot read a blueprint I cannot see what it is I need to do. The circle is complete.
This is not an absolute as much as it is a means of community: I cannot see and you cannot hear… and degrees do not matter much. This reinforces the point of unity, of commonality, of community, of commonness: we are all subject to the so-called disabilities. A disability can happen in but a moment’s time.
The circumstances of Robert Enke’s death are indeed now been resolved and now everyone knows that the real herzkrankeTochter Enkes died at the age of 2 years during an operation.
But hardly anyone knows about the tragedy of the operation, because the daughter did not die during a heart operation, but for a Cochlear implant surgery. Lara was born with a severe heart defect, so they had to take powerful drugs, which led to her deafness. The cochlear implant should correct this anomaly, but her heart could not stand the operation.
It takes at this point to say anything more about that one is not really vital to an operation is unnecessary heart disease and child Lara today perhaps could live and therefore Enke.
I am profoundly deaf and many have tried to convince my deaf parents to giveme CI. I disagree. Once your child gets a CI, he will always be on the fence. With hearing aids, he can easily ‘switch’ worlds. CIs are kind of popular in both worlds but some deaf look down upon others with CI. You made a great decision!
Now it s about me and my life as a Deaf child and the lives of many other Deaf children who have had the ‘Plight of Suffering’ for so many years that has been carried on and on forever. This has not been stopped yet. Here you go: Can you imagine if you were in my Deaf child’s shoes the past days? A shadow Hearing child with hearing device who watched cartoons or children movies with no closed captions because AGBell Associated/ Medical practically/Doctors said “SO?”. Meanwhile this child explored everything that the picture tells me with my eyes that is my way of getting by as usual. Boy, See how Audism / AGBell/ Medical practically/Doctors lead us into the isolated world without having any kind of stimulation or feedback. How dare they expected me to hear that when I am a Nature Deaf human being since I was born!!!!!! They do not know the firsthand of Deaf experiences as far as I AM a TRUE NATURAL DEAF HUMAN BEING. What a big joke for us to have all kinds of hearing devices in the classroom and force us to speak. Meanwhile we couldn’t expressed anything that comes out from our minds without ASL? Think about this! **shaking my head**
I am so humbled and amazing by the traction that this post has gotten over the past 24 hours. In attempt to answer some of the comments here I have written an Update & Response post. I do encourage you to take the time to read that post.
https://sunshinepraises.com/2014/01/response-update-is-a-cochlear-implant-right-for-our-son.html
A lot of you who commented on my posts completely took me in the wrong way. I HAVE NOTHING AGAINST non-CI users, but I don’t like it when people give out the wrong information about such a beneficial piece of technology. It worked for me…maybe it’s not for you, that’s completely fine if you enjoy your life. I was in no way trying to bash your lifestyle by saying mine was better because I had a cochlear implant. I appreciate diversity in every way, believe me, I love diversity. Differences are amazing, and I appreciate it. If you love your life without CI’s, wonderful for you! I support people who have CI’s and/or do ASL. I don’t support the wrong information given out though. By the way, my reference to “normal hearing people”, Avalon, was meant to be about people who do not have a hearing loss, meaning anyone without a hearing assistive device because they can hear good without it. I’m done on here.
Thank you for posting this information and I whole heartedly agree with you! I had a friend her child was born deaf. I read a little at the time on ci and we talked. I told her I would learn sign language with her. Our children were already friends. She didn’t want her child to grow up different. I didn’t understand and still don’t. A ci was placed in her child and seizures began. The little girl didn’t survive to see pre-school. She would have survived if her parents could have acceptes her the way she was. I am now a student of ASL. It makes me very happy to hear that you accept and respect your child the way he is 🙂 !
You are a wise and loving Mama! I am so thankful to know you and your family personally. Your baby is perfect. He is beautifully and wonderfully made. Anyone who thinks you should take drastic measures to change him is silly. You are so right to avoid any unnecessary and invasive medical procedures! And I know for certain your son will grow up to be an amazing and successful person because he is loved!
Lalalala!! I was born hearing until I was 18 month old, my daddy damaged my hearing therefore, he carried his silent guilty until he was dying, he asked me to forgive him. I love being Deaf, wow beautiful body language, dance/song performances, art language, I am proud of myself being successful instead of being a robot….thanks to my daddy for not trying to find me a stupid cure!!! You don’t need to make your children suffer from migraines coming from cochlear implants!!! Sad!!! I count my blessings!
Wow…. a great informative post by the original poster. I totally agree with a lot of it. I am 23 years old, was diagnosed as severely-profoundly deaf at 9 months and got hearing aids at 14 months and went to a deaf school. Grew up oral and got a CI when I was ten. Was a mutual decision between myself and parents. I wanted one because most of my friends had one and I wanted to hear a bit better. Thirteen years down the line, I only use my CI for work. I am quite happy with just my HA, am still oral but use sign language with deaf friends and my family know a few signs. I decided a few years ago that people are goin to adapt to me. I am lot more confident without my processor. I dont have to worry about my speech or if I have misheard. Either way your son will be successful but sign is wonderful and children learn language a lot quicker if they sign from an earlier age
I am proud of your decision that you chose not CI. It is a gift when you get deaf child.
I know you do not have it easy when the outside world pushes you. Be strong and enjoy parenthood!!!
Best regards, Ausra from Sweden
I am glad to see so much discussion about cochlear implants, but dismayed at the dissemination of flat out wrong information concerning cochlear implants! Also, this is clearly a “choice” for most parents. Choose as you wish for your child, but don’t be so quick to characterize those of us who chose to implant our children as “reckless” or as putting our child in danger in some way. Yes, it is surgery and with any surgery comes risk, but the long term benefits are endless. Additionally , there is risk in accepting deafness as well, as we live in a world where all senses need to be heightened and I, for one, am glad that my daughter can rely on HERSELF to recognize danger. And equally important, my daughter, who was profoundly deaf and implanted in 1996, is now living a full life that a deaf child could not even dream of if she did not have her cochlear implant. She is dean’s list in her last year of college pursuing her DREAM JOB, which is to become an ON AIR TV broadcast journalist in the entertainment industry. Can a deaf child without a cochlear implant do that? Moreover, she sings (and on key), dances, choreographs (is a NATIONAL award winner in choreography), plays percussion and TEACHES interview skills to competing pageant girls in her own very successful business! Can your NON CI child do all that? Here’s a video of her on one of her professional jobsa s a stule correspondent for “Tanger Outlets”.
http://www.youtube.com/watch?v=bvMHOeUj7-Q&feature=youtu.be
And here’s a video of her tap dancing:
http://www.youtube.com/watch?v=i_fZJo03YSs
We CHOSE to implant and our daughter’s life has been enriched a million times over. We have no regrets! I won’t diss your decision not to implant, but please don’t diss mine!
Thank you for sharing your daughter’s story. It sounds like she is just perfect. I am not sure if you actually read my blog post or not. It seems there is a lot of “interpretation” of my words. I never said anyone was “reckless” not did I call out any CI parent for choosing a CI. I actually never even mentioned other parents, Deaf, hearing, CI supporters or other. My post was about the casual way CI’s are suggested to my family by people who truly are uninformed and see the CI as a miracle button that just turns sound on making children instantly hearing (normal). The post is even entitled “Our Son” because that was exactly what is about, our son.
I think it is interesting that you see our decision as a diss because no where in my post did I “diss” your choice. I didn’t even address the choices that others make. I didn’t even say one negative thing about parents who choose a CI. Everyone’s uproar is actually quite fascinating.
Lastly my Non-CI child is only 7 months old (again, did you read the piece) so no, he hasn’t yet started college and isn’t walking so tap dancing is kind of out of the question. So far his biggest accomplishments are rolling over, sitting up and snuggling. Oh, that and he made his first independent sign at 5 1/2 months. He clearly signs “MILK” while on the boob and with a bottle. He also signs “All Done” – Which is pretty cool.
Melanie, I obviously don’t have the hang of this “blogging” thing yet. I was not responding to your post. It was beautiful and you are correct that you did not mention any of those things. I wish you the best and I totally 100% respect your decision and am confident that with a mother like you, your child will be “perfect” as well. I was actually responding to so many of the Comments to your post, some of which were beautiful and poignant, others of which were totally misinformed and accusatory towards parents of children who do use CIs. My daughter has committed much of her life to helping all hearing-impaired , Whether using cochlear implants or not, and pageantry has enabled her to do this. She has attended Starkey hearing foundation missions and if you know anything about them, they Distribute hearing aids to adults and children around the world who otherwise could never afford them. She not only educates about cochlear implants, as she attended an oral deaf school, but she advocates for laws that benefit all Hearing-impaired. She has a program called “speaking through my death ears” and it is an empowerment and motivational program geared towards not only all hearing-impaired, the children and all type of situations. She is truly an inspiration. But for her, having a cochlear implant has opened up the world and options that she could have never had been 100% profoundly deaf. She could never be a TV broadcast journalist with Simply hearing aids. We knew that she would never have wanted it any other way and we strong we stand behind our decision to implant her.
When my wife and I discovered that our son was deaf, we immediately bought ASL books and signed up for ASL classes at a community college. We also began immersing ourselves within the Deaf community. My son is now two, and his signing is great. He communicates with us all that time, even full sentences. It’s incredible, and I’ll be forever grateful to the Deaf community and ASL.
After doing our own research, we decided that it would be in his best interest to receive a CI. We desperately want him to be bilingual in ASL and English, and we just didn’t see any research that says a CI would hinder his ability to learn ASL. We found a wonderful Deaf babysitter that watches him while I work and provides a fluent language model, and we continue to sign with him at home. We also speak with him and play music with him. We want the best of both worlds and don’t see why he can’t have that.
I know people keep saying to wait until the child is old enough to make their own decision on this issue, and I truly wish that were a valid option. Neuro pathways are being formed now, and he just wouldn’t receive nearly the same benefit if we waited until he was old enough to make an informed decision. Our thinking is that we are trying to provide him with options. If he no longer wants to wear his CIs when he is older, we would completely support that, and it will be a true option because we never stopped signing with him.
We never received pressure from any of his doctors or audiologists about getting a CI, but I do know it happens, it just wasn’t our experience. My wife is a surgeon and after reading about the procedure, thought the risks were small enough, and the benefits great enough that it was worth it.
That’s how our family has approached this issue for our son. I also recognize that what is right for my family may not be right for yours. I fully support your decision not to have your son implanted, and I know he will do great things because of how much you care and how involved you are.
It sounds like you are doing an amazing job and are wonderful parents. Thank you for sharing your story.
Elective brain surgery to fix what isn’t broken. Nothing more or less. I believe that parents who have it done really DO have their kid’s best interests at heart, unfortunately they are just often so misinformed by a MEDICAL community that wants a MEDICAL solution to a NON-medical problem.
Hi there I have 9 year old boy and he is profaund deaf he got his first cochlear when he was 2 and the second one just now both operation it went well and his doing well the first we decide but the second by him self no one recognise him that has a cochlea he is in a good school he das bsl to he has very good Speach but what I wanted to say is to Avery body’s choice but we are happy
Our son has worn hearing aids for 18 months. He is profoundly Deaf and gets zero benefit from the aids. We are getting him the CI however we are also teaching him sign, he will go to a Deaf school and he will know Deaf culture. We have committed ourselves to the many appointments the CI process endures including the many months, years after surgery it will take to teach him what sounds mean. We are not using the CI as a “fix” but merely an opportunity for him. Sometimes people have to think outside the box and trust that no matter what parents always make the very best decisions for their children based on what they need. No parent is right or wrong when choosing what’s best for their own individual family or circumstance.
There is no 1 correct answer for every family. Each child/household is different.
However; to assume that someone who does not receive a CI is somehow less educated or prepared for the world beyond school that someone who is hearing or has a CI is not only disgusting but completely wrong. I have met MANY who were born hearing who cannot use proper grammar, punctuation or spelling! Many who were born hearing cannot string two sentences together properly and whom I wouldn’t hire to feed and walk my dog!
If a family is willing to learn sign language and to make sure their child gets the best education possible then there is no NEED for a CI. This is not a life saving proceedure!
I have has a total of 21 NECESSARY surgeries in my short 34 years of life and each time I was sedated or “put under” there was a chance I would slip into a coma or DIE! Why take that risk if it’s not to save the child’s life?
The decision whether or not to implant is a very individual choice. I’m hard of hearing myself (I wear a hearing aid and I’m about to have a surgery to get my first BAHA – bone conductive hearing aid) and I don’t discriminate either decision.
My son is 7 years old and wore hearing aids until he was 3. I did my own amount of research when I was told his hearing loss was severe enough for him to be a candidate for the CI’s. From both his hearing experiences and mine, I learned quite a good amount of information:
The first important fact is that hearing aids can only amplify sound. Meaning, you can turn up your high frequency levels and/or low frequency levels, but even then, in some cases, it might not be enough for a person to distinguish the sounds he hears. I often explain to people that having a severe/profound hearing loss does not mean necessarily that you just hear everything too low. The sounds you hear can be distorted too. So imagine having a “bad quality” of sound coming in, such as a muffled sound, then you turn it up with a hearing aid.. well you’ll get a loud muffled sound which might not necessarily help you understand it.
My son went to pre-school in a total communication environment and I worked there for a couple of years too. I’ve seen all kinds of cases and they are soooo individual. It depends not only on the hearing loss itself, but also on their personality, intelligence, other issues they may have, culture, etc.. Some learn ASL easily and apply as their main form of communication, some prefer to be more oral and refuse to sign, some rather do both. Some kids wore hearing aids, some had CI’s, some had neither and others both. We addressed each individual case without discrimination and provided them with whatever tools they needed to grow as close as possible to what’s expected at their age level.
CI’s work different from hearing aids. No, they are far from being a “cure” and I was taught they were only considered an option when the use of hearing aids failed and/or when the hearing loss is severe enough to know that hearing aids would not help much, if at all, with being able to distinguish sounds.
Most commonly, a hearing loss can be due to an issue in the middle ear or when the nerve cells inside the cochlear are damaged (the last being the most common for CI candidates). Chances are, if the hearing loss is severe to profound, a good number of these nerve cells are already damaged and it’s not allowing a person to understand sound clearly even with a hearing aid. The CI will NOT amplify sound, it will, instead send electrode signals from the outside processor into the cochlear to the brain. It’s basically trying to do the job the nerve cells can’t anymore. So that’s why the sounds are more electronic and not natural sounds.
The process of placing a CI could or could not damage the few hair cell the person being implant has left, but if those hair cells are not really doing much, it’s something that needs to be taken into consideration.
Another good point is the amount of time the person has been severely to profoundly deaf (without quality access to sounds). The longer the time, the more likely the brain is going to have a hard time learning sounds again. Remember, the brain is an organ that needs to be stimulated and the longer time you spend without hearing sounds, the harder it will be for your brain distinguish them. That is why every CI user has to have mappings, speech, etc.. it’s a learning process… If you hear a train passing by for the first time in your life, your brain will be confused and it will need to learn what that sound is… so it goes for everything. If you’ve been without hearing for a short time in your life, you’ll have a much bigger chance to understand every sound around you. When a child is really young, the brain is more malleable and it will have a much easier time understanding sounds. No wonder so many adults who have been deaf for a long time don’t use their CI’s as a tool for communication very well.
The children I’ve met who were implanted early (before 1 year old) developed wonderful speech and were terrific at understanding and responding to sounds.
I decided to implant my son when he was 3 and it’s been such a beautiful and busy journey since! He’s in 2nd grade now and being mainstreamed half the time. He knows he’s deaf and we still sign at home as needed. I want him to have both English and ASL fluency and if when he’s older he decides he doesn’t want his CI’s anymore, I’ll respect and support his choice. It wasn’t necessarily the CI’s that kept him busy, it was instead, his deafness. Even without the CI’s he would have to do harder work than his hearing peers.
To say one choice or another is the best choice is too much of a generalization and it’s misleading. There are no wrong choices, just choices… I wish your son the best on his journey and much success in his life! With or without HA’s or CI’s we have many examples of people who master wonderful life achievements in every case.
Thank you Priscila for sharing your story. It sounds like you have had a wonderful experience and are an amazing advocate for your child. I wish you and your family only the best as well.
Good for you to do your research and make the decision you feel is best for your child. He is so stinking adorable!!! It obviously wasn’t a decision you made lightly.
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Thanks for sharing your thoughts! You’re his mama and the ONLY one who can make a decision right now whether or not he should have cochlear implants. Thanks again for sharing your reasons.
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Your story is just like our son’s. He is now a happy 11 year old boy. We have also had to deal with the “why didn’t you”. His speech is wonderful for a child with severe and severe to profound hearing loss. And his sign language is phenomenal! !! He has been at the Florida school for the deaf for 2 years and is now living life even more than before. Good luck 🙂
I had the wonderful opportunity to do my training at FSDB and later become a long term sub in their elementary dept. It is such a beautiful school and is on our short list for relocation in a few years. Thank you for sharing your story.
It s interesting to hear your viewpoint but some of info. you wrote about CI are not correct like others said above. I have a deaf daughter with bilateral CIs in 3rd grade and she speaks and hears well like her normal hearing peers. No one could tell that she s deaf at all. She was born profoundly deaf and has received her first CI at nearly age 2 and then 2nd CI a few years later. She also had rehab for about a year or two but it was so much fun for her as she loved all the attention from her therapists. She is also fluent in ASL since birth and I advocate ASL for deaf kids, too but CI is just a tool that gives her an opportunity to hear and speak well. So she could participate in the hearing community independently without relying on interpreters. Her father and I are both deaf and are part of the Deaf community. I understand your fears and I felt the same way when my daughter was a tot but I did all the research and met deaf and hearing families with CI kids and deaf adults with CI and most of them have positive experiences with CI. Most adults with CI told me that they wish they had received CI as a child so they wouldn’t need so much rehab to learn to listen and speak. We decided to give our daughter CI at an early age and she can always stop using it later if she doesn’t want it but I don’t think so because she loves using CI all the time. We never regretted our decision. You don’t have to choose between ASL and CI and you can have both if you want! My daughter has the best of both hearing and deaf worlds. Good luck on your journey with your son!
JUST AN FYI:
I wanted to let you know that Sunshine Praises will be down late afternoon and evening for a pre-scheduled blog maintenance! We are getting a make-over!
Just didn’t want anyone to think I have taken down these posts or the blog.
Hi,
I am a 19 year old female. I was born profoundly deaf in both ears. I got a cochlear implant at 3 1/2. Let me tell you something. The Cochlear Implant is the best choice for your deaf child. And you’re not getting your child the implant because of radiation and complications? That doesn’t fly with me. Your child is going to grow up with WAY less opportunity than he could have with a cochlear implant. I went to PUBLIC school with little to no help from anyone else. I graduated high school near the top of my class. I’m attending college, living with a hearing roommate. All my friends are hearing or deaf, and I have a boyfriend. I just got my first semester grades back…GREAT. And to see that you are possibly denying your child this kind of possibility makes me sad, it breaks my heart. Yeah he can get the surgery when hes 10 or 15 or 20 but IT WON’T WORK AS WELL. All the stuff you talked about is worth it, and I get the feeling you just don’t WANT to do the work and dedicate the time involved.
I am sorry but to say you only have those opportunities because you were implanted is wrong. I have a profound deaf brother who went to PUBLIC schools, college with amazing grades, lived alone, had jobs right along side hearing kids and never had an implant or hearing aids. being deaf denies you nothing towards life and your successes. yes you may have to work a little harder but everyone has different possibilities and experiences
A new study. Gosh why do the moms always get blamed q
http://m.sth.sagepub.com/content/39/1/130.abstract
Hi,
Our daughter was born with perfect hearing and developed speech well but sadly aged 4 she was struck down with Meningitis but made a remarkable recovery. However, 3 weeks after leaving hospital, she was diagnosed as having severe hearing loss. She could hear perfectly well for 3 weeks after leaving hospital and my daughter tells me that to her it was as if somebody switched off her hearing on that day. It was 20th December 2010.
It was a very sad and emotional time for us as parents and we were immediately allocated to a CI Specialist Centre at a University Hospital for a period of assessment over the next 12 weeks.
At first we felt that CI would be suitable as we thought it was our only option to give our daughter her hearing ability back. As we went through the process, we learned more and realised how invasive the surgery was and that hearing would not be the same for her ever again. She was fitted with hearing aids and thankfully we were told that she was sitting slightly above the threshold for CI implants. That was the news we wanted to hear and we set about implementing measures to support her at mainstream school and at home considering the hearing loss. She learned Makaton at nursery and now in Year 2 (Britsh school system) is learning BSL.
She had a recent hearing assessment where the audiologist feels there may be some evidence of deterioration in her hearing level so pending further assessments and investigation, we may need to make changes to support her further. Her hearing is now severe in the left ear and profound in the right but I am not keen to consider CI but we want to explore how higher power hearing aids may help if there is deterioration. I think it is too invasive but accept that it is a solution for quite a few people who may never otherwise have hearing.
I do think that where Mums and Dads have felt bad for considering the CI option, you just need to remember that you know best for your child and with the support of your Paediatric Audiologist, you will make the right decision and the one with which you feel most comfortable. You will always support your child in every way just as we do and that is what really matters.
Good luck, S x
i didnt read all the comments but I read the blog.
i am also a 30 years old hard of hearing woman with severe loss in both ears and I wear hearing aids. I went to mainstream school, university (masters with distinction) and now I am a manger in drill bits at an oil company. this means there is no distinction with jobs for CI people and hearing aid people. It is all about support , love and courage and encouragement ( I thank my parents for this).
i am glad my parents didn’t push me for a CI. I beleive all hard of hearing children should be given an option of Ci and know the risks that they will go through. I am not comfortable with the idea of an operation on my head and damaging my cochlear and I am fine with my hearing aids. I do have friends with CIs and I support theme. it is each to their own.
It isnt actually the disable are able, but it is the society that disables.
this is beautifully written! As a hearing mom of a deaf toddler i too am shunned and criticized for not implanting my daughter. But people don’t understand how extensive CIs are. I also grew up partly in the Deaf community due to a deaf brother and the only thing i would add is any slight responses to an active CI are considered a Successful implant. so they may not even give a child that great of hearing. Most CI implanted children in my daughters school have the same responses as she does with her hearing aid “survival hearing” they don’t understand speech or talking just extremely loud noises
Thank you MommyofaDeafie for you comments. I truly believe that some CI’s are true miracle workers, unfortuantely, I also believe that there are many kids whos parents are fed the belief that they will make them “like hearing” and then gravey disappointed when it doesn’t work out that way. Our son’s infant/toddler program has a range of kids with CI’s and a range of what one might call a “success.” It is a deeply personal decision but I don’t think there is enough information given to parents.
I tried to read as many comments as I could after reading the authors’ post. I have to say I didn’t get through all of them, so I felt it best just to write my thoughts before reading anymore and because I may forget what I want to write. LOL
My son is now 21 years old, he was diagnosed as being deaf when he was almost 3. His pediatrician and us fought trying to get him an ABR test, we knew something wasn’t quite right with his hearing when he was 8 mos. old.
His father and I are both hearing. At that time CI’s weren’t available or they just wasn’t talked about. When we first heard about CI’s my husband and I talked to an audiologist about the procedure and what all was involved and decided against trying to have our son get one. I’ve not regretted the decision. Also, our audiologist didn’t try to *ram* it down our throats, thinking it was the only way to go. We moved across country… well from AZ to PA for our son to attend a school for the deaf in Pittsburgh. Since he was already behind in language acquisition, it truly surprised us how fast he picked up ASL. Along the way there were other problems which I don’t believe belong in this blog. But I do want to say once again, the decision not to have a CI on our son has never been regretted. I feel a lot of times when parents have CI’s preformed they feel a miracle has happened and I don’t believe that. A miracle is given by GOD! And yes, I believe if God wanted our son to hear, it would happen. I’m not ashamed of my son, I don’t feel he’s less of a person because he don’t hear. There were a few kids at my son’s school that had CI’s, I don’t feel that their parents did wrong either. I think it’s an individual’s decision. Now if my son wants a CI, I would want it to be HIS decision and for him to be completely informed about the risks associated with them. And like any surgery there are risks. He may not be the best speller, the best reader, but as I said there are other things going on with him, but I don’t blame the deafness for his problems.
I’m happy to know he is part of a deaf community and a part of our hearing community even without the CI, because he’s a part of my husband and myself so he’ll always be part of both.
Those of you that feel a CI is the only way to go, please go an educate yourself to be totally informed about it. Don’t jump to a conclusion of NEEDING to get one because of what someone else says. It’s a decision you have to live with the rest of your life and it just may not be the best decision. The school my son attended until he graduated had a total communication approach and I wouldn’t had changed that for anything.
Thank you for listening to me.
Thank you for posting this. I had no idea how invasive this really was. My daughter has some sort of hearing loss (extent undetermined). My post on that is actually going live in the morning.
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I had the chance to read your post today. I can’t imagine how frustrating this must be for you. I hope that you are able to get answers quickly.