A Mom of CI Children:They’re Not Listening To Us.
“I had no language the first six years of my life. I remember that my mom had to drag me out of the living room to begin practicing my hearing skills with the radio in kitchen, and she trained me to speak everyday. Whenever I tried to use my hands, my mom put them down. We couldn’t communicate until I was six years old. That’s when she took me to a school that included sign language. From there on, my mom and I learned to communicate. Once I had access to sign language, my education finally began.” Aidan Mack http://deaffilmblog.blogspot.com/2008/01/re-there-is-no-need-to-hear-to-listen.html
From a hearing mom: This paragraph says it all and is what parents like me keep trying to explain, but it seems they’re not listening to us. No CI child raised orally goes 6 years without language anymore. Babies implanted at a year are caught up to their hearing peers by about age 3. Those implanted at 6 months are caught up by age 2. Not only that, but they hear incredibly well. I hear what people like this guy are saying, but he doesn’t hear what we are saying. We agree that having a child have no language for so long is absurd, but that is not the case anymore at all. Even Jessica, who was implanted at 15 months, had age level receptive language by age 3. By age 6, she tested age level to two years above both receptively and expressively. – That’s quite a difference from no language at all at age 6.
Commentary: I’ve been researching for over two months, talking to various people about the use of cochlear implants with prelingually and profoundly deaf children. This mother has two C.I. kids, one in college and one in jr high school. Both are doing exceptionally well and require no support services in their educational settings, according to her.
I will start a series on C.I. exploring it from different angles, covering both the successes and failures. There will be stories from the deaf kids and adults with C.I.s.
The cochlear implants functions very differently from the hearing aids that it is like comparing oranges and apples. Hearing aid ampliflies whatever residual hearing one has, but doesn’t amplify anything from the areas in the cochlea devoid of cilia necessary to transmit the mechanical signals to the auditory nerve where they are converted to electrical stimuli. So, at the best, the person can hear partially, not fully. However, the cochlear implant replaces the cilia of the whole cochlea, providing a wide range of frequencies.
The cochlear implants available now are superior in quality compared to those manufactured a generation ago. Toddlers and babies are being implanted much earlier nowadays than before. In other words, the current second generation of C.I. kids is drastically different from the first generation. The implantation of device is done at a very young age to maximize the benefits from the plasticity of the brain during the critical period of language development, followed by intensive AVT and parental involvement. Plasticity refers to the ability of the very young brain to program itself to recognize the new sounds, including words, quicker and easier. Plasticity is reduced with age, so the younger the child, the higher chance of success. In other words, a child implanted less than one year old on the average tends to do vastly better than a child implanted at the age of four or five, on the average. However, the success rate depends on many criteria, such as age of implantation, the amount and quality of AVT, the extent of parental involvement, the accuracy of mappings, the skills of the surgeon, the language of the parents, and whether the child has disabilities or not. Experienced surgeons have better results than inexperienced surgeons. This also applies to audiologists and AV therapists. However…. if the child doesn’t have intensive AVT and heavy parental involvement after the surgery, the ability of the child to benefit from the use of cochlear implants is adversely affected. These two factors will determine whether a healthy deaf child implanted at a very young age will succeed or not.
The argument about allowing the deaf kid of legal age decide whether to get a C.I. or not rather than having the deaf infant implanted has one serious flaw. By the age of 18 years old, the brain no longer has the ability to learn to decipher words as the aural neurons have already atrophied from many years of disuse. At the most, environmental cues will be recognized, but speech comprehension isn’t a realistic goal unless the person already had speech comprehension skills prior to C.I.
If you want to share your story or know someone else who is willing to, please contact me at mishkazena@aol.com. I’ll be interested to hear all, both positive and negative. My position on this area continues to be neutral . It is my desire to see that all parents have full access to all options before they make an informed decision on the communication method for their children. It’s also my wish to have the Deaf Community understand better the current impact of cochlear implants on deaf children. It has revamped the Deaf Education considerably, with more kids attending mainstreamed programs with minimal support system than ever.
I understand this is a very sensitive and highly controversial topic. However, I request that the commenters be respectful and refrain from bashing. Please keep in mind that the parents are doing this out of love and desire for their deaf kids to have the best opportunities in life, just like any other parents. Deaf people are very concerned as they also want the best for those deaf children, too, based on their experiences and observations. They don’t want to see these children be deprived of communication and language while experiencing oppression like so many older Deaf people did. Thanks MZ
P.S. Many Deaf people are also highly skeptical of the touted successful rate of cochlear implants. For many decades, hearing parents and deaf children were deceived by doctors and oral educators on the success rate of oralism which in reality had an exceptionally high rate of failure. Seeing deaf kids with cochlear implants still going to residential deaf schools reinforces their skepticism. MZ
Warning: Disrespectful, bashing, or mocking comments will be deleted. MZ
“I had no language the first six years of my life. I remember that my mom had to drag me out of the living room to begin practicing my hearing skills with the radio in kitchen, and she trained me to speak everyday. Whenever I tried to use my hands, my mom put them down. We couldn’t communicate until I was six years old. That’s when she took me to a school that included sign language. From there on, my mom and I learned to communicate. Once I had access to sign language, my education finally began.” Aidan Mack http://deaffilmblog.blogspot.com/2008/01/re-there-is-no-need-to-hear-to-listen.html
From a hearing mom: This paragraph says it all and is what parents like me keep trying to explain, but it seems they’re not listening to us. No CI child raised orally goes 6 years without language anymore. Babies implanted at a year are caught up to their hearing peers by about age 3. Those implanted at 6 months are caught up by age 2. Not only that, but they hear incredibly well. I hear what people like this guy are saying, but he doesn’t hear what we are saying. We agree that having a child have no language for so long is absurd, but that is not the case anymore at all. Even Jessica, who was implanted at 15 months, had age level receptive language by age 3. By age 6, she tested age level to two years above both receptively and expressively. – That’s quite a difference from no language at all at age 6.
Commentary: I’ve been researching for over two months, talking to various people about the use of cochlear implants with prelingually and profoundly deaf children. This mother has two C.I. kids, one in college and one in jr high school. Both are doing exceptionally well and require no support services in their educational settings, according to her.
I will start a series on C.I. exploring it from different angles, covering both the successes and failures. There will be stories from the deaf kids and adults with C.I.s.
The cochlear implants functions very differently from the hearing aids that it is like comparing oranges and apples. Hearing aid ampliflies whatever residual hearing one has, but doesn’t amplify anything from the areas in the cochlea devoid of cilia necessary to transmit the mechanical signals to the auditory nerve where they are converted to electrical stimuli. So, at the best, the person can hear partially, not fully. However, the cochlear implant replaces the cilia of the whole cochlea, providing a wide range of frequencies.
The cochlear implants available now are superior in quality compared to those manufactured a generation ago. Toddlers and babies are being implanted much earlier nowadays than before. In other words, the current second generation of C.I. kids is drastically different from the first generation. The implantation of device is done at a very young age to maximize the benefits from the plasticity of the brain during the critical period of language development, followed by intensive AVT and parental involvement. Plasticity refers to the ability of the very young brain to program itself to recognize the new sounds, including words, quicker and easier. Plasticity is reduced with age, so the younger the child, the higher chance of success. In other words, a child implanted less than one year old on the average tends to do vastly better than a child implanted at the age of four or five, on the average. However, the success rate depends on many criteria, such as age of implantation, the amount and quality of AVT, the extent of parental involvement, the accuracy of mappings, the skills of the surgeon, the language of the parents, and whether the child has disabilities or not. Experienced surgeons have better results than inexperienced surgeons. This also applies to audiologists and AV therapists. However…. if the child doesn’t have intensive AVT and heavy parental involvement after the surgery, the ability of the child to benefit from the use of cochlear implants is adversely affected. These two factors will determine whether a healthy deaf child implanted at a very young age will succeed or not.
The argument about allowing the deaf kid of legal age decide whether to get a C.I. or not rather than having the deaf infant implanted has one serious flaw. By the age of 18 years old, the brain no longer has the ability to learn to decipher words as the aural neurons have already atrophied from many years of disuse. At the most, environmental cues will be recognized, but speech comprehension isn’t a realistic goal unless the person already had speech comprehension skills prior to C.I.
If you want to share your story or know someone else who is willing to, please contact me at mishkazena@aol.com. I’ll be interested to hear all, both positive and negative. My position on this area continues to be neutral . It is my desire to see that all parents have full access to all options before they make an informed decision on the communication method for their children. It’s also my wish to have the Deaf Community understand better the current impact of cochlear implants on deaf children. It has revamped the Deaf Education considerably, with more kids attending mainstreamed programs with minimal support system than ever.
I understand this is a very sensitive and highly controversial topic. However, I request that the commenters be respectful and refrain from bashing. Please keep in mind that the parents are doing this out of love and desire for their deaf kids to have the best opportunities in life, just like any other parents. Deaf people are very concerned as they also want the best for those deaf children, too, based on their experiences and observations. They don’t want to see these children be deprived of communication and language while experiencing oppression like so many older Deaf people did. Thanks MZ
P.S. Many Deaf people are also highly skeptical of the touted successful rate of cochlear implants. For many decades, hearing parents and deaf children were deceived by doctors and oral educators on the success rate of oralism which in reality had an exceptionally high rate of failure. Seeing deaf kids with cochlear implants still going to residential deaf schools reinforces their skepticism. MZ
Warning: Disrespectful, bashing, or mocking comments will be deleted. MZ
January 11th, 2008 at 1:58 pm
I am sure you will provide a well-balanced blog on CIs eventually; I look forward to reading it in the near future.
I sent my son to AGBell-sponsored summer camp last year and he was the only kid who did not have CI (he wears digital hearing aids) and I noticed the CI children were happy at the camp, chatting (no signing) and they seemed comfortable. The parents (I was the only deaf parent) were positive and showed a lot of involvement. My son remarked to me that he was amazed at how well the CIed kids spoke.
January 11th, 2008 at 2:08 pm
That is a good, valid question you have.
The differences between the older kids and the infants that both received the CIs for the first time, are very critical.
I cannot give you the answer because I do not know the status about the differences between the 1980′s and the 2000′s CI kids. (Based on the ages)
White Ghost
January 11th, 2008 at 2:10 pm
Yup, things have changed a big time since the appearance of cochlear implants… I am sure that 21st century will see the rising success of CIed children functioning in the hearing world.
I am sure most of us are interested in listening.
Still, I believe the key is the parental involvement…
)
January 11th, 2008 at 2:13 pm
Yes, this is very sensitive, MZ. For both sides.
Especially for so many who have been scarred and they have every right to express their anger and feelings, but not to attack the hearing parents of their deaf children – or for attacking the Deaf people, for that matter.
I feel so bad for Melissa’s daughter, Rachel, how she didn’t want to interact with people like me because of the treatment she got. I sure would love to give her a hug, even if she didn’t want to learn ASL. I hope that by now, she might be more comfortable in approaching Deaf people, as well as her little sister, Jessica. That’s not to say they HAVE to, but you know, if they happened to…
I also want to hug those deaf people – of ALL walks from life – who had shitty experiences as well.
I look forward to reading your upcoming blogs from different angles.
I, too, wish for people to be respectful – on BOTH sides.
January 11th, 2008 at 2:37 pm
I remember how my mom used gestures to tell me where I was going. She said new school and she demonstrated by sitting me on her easy chair and indicated she was going to drive to school. She showed me my new lunch box (Roy Rogers).
She was gesturing a lot. I enjoyed it a lot.
But that new school told her not to do that and that I had to use oralism.
My world collapsed when audism sunk in for long time!
As for today’s technology, I am not going to debate that. It is that it still does not work in many cases. It is a final conclusion after 24 years.
Years of lies, corruption, and abuses have left the deaf community more divided.
There is no point of return to civility, respect and tolerance.
January 11th, 2008 at 2:54 pm
The deaf “camp” is divided because the hearing parents of deaf children are not fully embraced by the deaf community. The more we protest, the further we drive away the parents. The strategy needs to be changed with open mind and open heart so we can win the minds and hearts of the parents. The parents’ effort to reach out to the deaf community are falling on “deaf” eyes.
January 11th, 2008 at 2:57 pm
Well, Divide, personally I think it goes both way. I am not interested in blaming nor fingerpointing, but more into trying to open a constructive dialogue between the two communities.
January 11th, 2008 at 2:58 pm
The mom is correct. No professional anywhere recommends leaving a child language-less for 6 years. The only time I’ve seen this happen (and I know lots of kids with CIs) is when a child is adopted from overseas and, unfortunately was not identified as having hearing loss or, if they were, they were not taught any language.
Intensive AVT is not difficult or unbearable, either. Just to clear up the fear that the child’s life is a living hell. Intensive really means “lots of talking.” My kids had AVT once a week, for an hour. By 2 (and even before) they were caught up. They graduated from AVT (that means they were finished– done with therapy) by 3. They then live and thrive in the mainstream. They don’t struggle to understand peers, teachers, or parents.
Continuing to “beat up” the parents of today for the problems your parents faced doesn’t make sense. You won’t clear up your angst or “save” any children. Our lives are not yours being repeated.
January 11th, 2008 at 3:35 pm
This is a very interesting topic that you are exploring. I was implanted with CI when I was three, but I pretty much had no language prior to implantation since I am profoundly deaf (from birth). I am now in college and yeah, I caught up with being able to speak ‘well’ by seven years old, but my intellectuality was still behind in terms of English (vocabulary and reading in general). I still am, sadly, but I’m still working on it.
I totally agree that the communication barriers between parents and the Deaf Community needs to be broken down. My parents had no information and was basically convinced that CI is THE miracle to be had and would fix me and viewed ASL as inferior.
So, I am all for making inroads in communicating different options for both the parents and the child. No child really shouldn’t be without language for however long. If the parent wanted the child who is not implanted but will be later (age 5 or 6) to comprehend English, use ASL first.
January 11th, 2008 at 3:49 pm
Yes, today’s deaf adults were frequently scarred by inept oral education methods that cruelly suppressed their needs for communication and inflicted upon them the feeling that they were “not good enough” if they did not speak well.
Such unhappy experiences are the reason for the anti-CI reactions of the Deaf community and perhaps the push for Deaf cultural pride and culture identification.
To be questioned seriously is whether the same mistakes are repeated in today’s CI generation. Is the expectation of being “fully caught up” and “functioning as normal” truly realistic for all deaf children?
Are parents expecting too much, so that when their children grow up they will suffer the same anger and feelings of deprivation that earlier generations did?
MZ, do explore thoroughly the variables that may make the CI a great risk to undertake. I have read of many poor results related to surgical skills or narrow-minded rehabilitation goals.
I am, on the other hand, cautiously excited that maybe deaf children can grow up to be as capable as hearing children in auditory skills and that the CI will signal a revolution in the future of the Deaf community.
But my excitement is with a lot of trepidation. Show me both the successes AND the failures, show me the numbers, and show me the quality of life experienced by all CI people. It will take a lot to convince me, and the majority of Deaf people.
Show me also that these CI deaf people will be capable of standing up to a Hearing community that is clueless and often discriminatory against anyone that is different.
Show me that these CI deaf people have the same advantages that Hearing people do, and make full use of them.
Show me that these people can get through daily life without worrying that they will miss something because others take it for granted that they can hear everything.
Show me that the surgical assault on their skulls and the invasion of their brains are not likely to need redoing, to have something go wrong, or that they need life-changing maintenance and extra care.
Show me that the claims of the CI manufacturers, the surgeons, and the anxious mothers are with good basis and are accurate and truthful.
January 11th, 2008 at 4:04 pm
Beautiful post, I look forward to reading all that you provide. When I was researching the ci, I wanted to hear all of the pros and cons, I was more interested in hearing the cons because I wanted and needed to be prepared for what the consequences could be in performing the surgery. I am sure you will find both positive and negative experiences directly related to the age of implantation and parental support. I knew that there could be complications with the surgery, and I still chose to go through with it, such a traumatic decision. I wanted my child to be able to choose his path in life in regard to the future. The CI was the best option to make this possible. You will not find the “magic answer” however many stories you find. There will be no one story that will convince you because the ultimate choice lies with the parent brave enough not to wait until it becomes the “child’s decision.” I decided that I did not want to make that my child’s responsibility in the future.
The necessity to choose is heartwrenching, but a choice must be made at some point. I am not telling anyone that the ci is the best option, I am merely stating that it is an option in choosing communication methods for your deaf child and that in our case, it has changed our lives. There is no right or wrong answer here, the point is that IT IS HERE…and it needs to be accepted. Jodi
January 11th, 2008 at 4:16 pm
Hi,
Our biggest question would be:
What makes a deaf child successful?
And
What makes a deaf child fail?
I know these two questions are very broad. Let’s picture it this way. Would a hearing parent be happy with their deaf child if they could speak with almost perfect speech, possess excellent ASL and have perfect English writing skills? Is this what hearing parents want for their deaf child?
Deep down, are they concerned about their child’s well-being, self esteem and acceptance of their disability? Is CI preventing them from facing the reality that their child will never hear?
When does the hearing parents finally come to their senses that their child will never hear and that they will still be deaf? During their teen years or when?
Seems that many hearing parents have very high expectations of their deaf child when they are little but slowly they begin to see the real picture as the child gets older and come to grips that their child will never be hearing. Many times children who get to their teen years often rebel and want to stop wearing CI.
Is that failure? Or what is it?
January 11th, 2008 at 4:20 pm
Good blog, and excellent comments and questions. I understand the concerns within the Deaf community. The strengths and limitations of the CI are way better understood now than they were even 10 years ago. The brain’s ability to make sense of sound is also way better understood now. This should (hopefully) eliminate implantation of people who won’t get good results from the implant.
Every person is unique, and each situation must be evaluated individually. Nobody wants to see somebody implanted who later regrets it. It is vitally important that the expected results are understood before surgery. The parents of a 6 month old baby will almost assuredly see better results than those of a 6 year old. The 6 month old can expect to be mainstreamed in kindergarten with full age appropriate language. The 6 year old may never attain full oral language capability. The more we know, the better chance there is to predict correct results.
My daughter is almost 10 and has been implanted since 12 months of age. Does she occasionally miss stuff? Yes. Mostly because the speaker is too far away or on her non hearing side. So it is important to teach her how to use good repair stratagies, and to recognize when she needs someone to repeat themselves. But she doesn’t miss much, and she is above grade level in every area. Most importantly, when asked, she will tell you that she loves being deaf and she loves her implant. She is happy and well adjusted. We will have to wait and see if she ends up with regrets, but I don’t think she will.
January 11th, 2008 at 4:51 pm
Hi, MZ,
Don’t have video comment yet? I wish to leave a message in video comment, but writing a message is fine..
One person mentioned how well CI kids speaks, but still wants them use ASL regardlessly. I was kind of cautious with this message. I felt that, based on my experiences with Deaf people and their speech skills, statistics and tests are needed to prove that they speak better with CI, AND how much they can speak with (a few or a lot words).
Thank you, deafk
January 11th, 2008 at 4:54 pm
I agree it goes both ways. The problems I see from many hearing parents is that they want *confirmation* from the signing people. They want an answer – something they’d take to reinforce their beliefs and decisions that they made the right choices. I refuse to give it to them. So like this hearing mom, she resort to blaming. Typical cop out to make signers feel guilty and responsible. Sorry, not buying. I don’t advocate their decisions at all for various of reasons. They do not have Deaf history, many of us do.
ASL must be inclusive for Deaf child with severe to profound hearing loss rather than C.I. and auditory-speech training. Children with mild-moderate level of hearing loss can wear hearing aids or C.I. since they will be considered “hard of hearing.” Highly suggested to include ASL for lingusitic development as well. Sorry, it goes both ways. ASL is still not inclusive in overall system so hearing parents should understand where we are coming from. After all, hearing parent after hearing parent let it happen by saying, “No no signing, we want our child to talk and hear.”
January 11th, 2008 at 4:55 pm
wow, very beautiful post; noble too.
Ever think about submitting your findings to local and international media, schools, etc? i bet you can get funding to help you expand your studies and pay for travels, etc if it gets that far.
i certainly can see it going there.
January 11th, 2008 at 5:01 pm
I want to respond to the question as to what makes a deaf child with a CI successful or not. I can only speak for myself and how I view my children and those I know. To me, successful means not just that they hear and speak well but that they are also able to function fully and happily in life both academically and socially with no opportunities denied to them that they want because of their hearing. This doesn’t mean that they are exactly who they would have been had they been born with normal hearing because that is not possible. Certainly their deafness and CIs have shaped a great deal of their lives.
You mention self esteem. Rachel has actually stated a few times that she feels she has benefitted from her deafness, that she has met people and had opportunities that she would not have had had she been born with normal hearing. If that’s not acceptance of deafness, then I don’t know what is. She is very proud of what she has accomplished, in particular of becoming fluent in French, including spoken French, because the professionals originally told us that she would probably never even speak English well.
Not all children will “succeed” with CIs, but most can if they are implanted early and if their parents are dedicated to giving them what they need. I spent countless hours playing with my girls when they were younger, using play as an opportunity to feed in language. Jessica would actually be upset with me if I missed a day because she loved the one-on-one play time with me.
I can’t account for all the young adults out there who were among the earlier generation of implanted kids, but the several whom I know who were implanted at young ages or who heard well with hearing aids and then experienced a drop in hearing and were implanted later are all like Rachel. They are all attending mainstream colleges and are all happy with their lives. They keep in touch with each other via Facebook, email and occasional conventions. They have formed their own support network. Rachel had a question about CART reporting last year in college, sent out a question to her Facebook group, and had multiple responses within a few hours.
Finally, as a parent, I don’t feel anger towards the Deaf community as a whole, but I do feel it towards the militant ones who would have denied my right as a parent to choose the CI and Auditory-Verbal for my girls, especially those who to this day tell me I’ve done the wrong thing and accuse me of being a bad parent and who want to deny this choice to parents today. My girls today are living proof that I did the right thing for them because they are happy with who they are. Had I chosen another path, they still might have been happy, but the point is that at age 20 Rachel cannot imagine her life any differently.
January 11th, 2008 at 5:02 pm
Hi, K.L., Mom,
I m glad you share this with us. Still, you cannot speak for your adorable daughter. She needs to speak up for herself. Sorry, it is because of my experience… yeah.
And, you looking and seeing how she is doing is totally different than her looking and seeing AND feeling herself how she is doing. Is that something you ever thought of when you mentioned this? I do not know whether it is offensive, but yes, MZ mentioned the older Deaf people like me are very cautious. Thanks.
deafk
January 11th, 2008 at 5:12 pm
DeafK is correct. The Deaf Community needs to hear directly from the deaf kids and adults with cochlear implants how they are doing and how they feel about their cochlear implants. If any parents are willing to let their deaf kids share their experiences with me, please contact me at mishkazena@aol.com. I will keep the names confidential. This is the only way some Deaf people will believe.. from other deaf kids and adults, not from their hearing parents, hearing teachers, audiologists, nor doctors. It’s nothing personal… it is due to the decades of extensive deception practiced by the hearing professionals. In the past, many oral children have approached their parents as adults and told them how much they missed out growing up, etc, much to the astonishment and disappointment of their parents as they didn’t realize the language deprivation and inaccessability to oral communication were that severe. The parents were led to believe oralism worked well for all the Deaf kids, when actually it was in a minority. It’s for this reason why some parents of C.I. kids are told.. wait until the kids grow up… The Deaf people aren’t being malicious, they are speaking from personal experience. It was that bad decades ago. It appears with c.i. it is somewhat different, but the Deaf people are highly skeptical. Please do try to understand and not judge them.
January 11th, 2008 at 5:21 pm
All I can tell you is what I see and what she tells me. You need to understand that the implant gives full and complete sound to the brain, in the entire frequency spectrum. The key to success or failure is how well the brain can make sense of the sound. That depends on how completely the auditory center of the brain can be developed. If you are implanted as an infant, and get appropriate auditory therapy afterwards, the auditory center develops along the same path as a hearing child. Those children will develop like hearing children. They are not missing language. Tests confirm this.
If you have a mild or moderate hearing loss, you are not a candidate for an implant. You can only receive one if you are severe to profoundly deaf.
January 11th, 2008 at 5:40 pm
[...] A Mom of CI Children:They’re Not Listening To Us. [...]
January 11th, 2008 at 5:56 pm
MZ,
I fully trust you about being fair with this “survey”
I just getting flashback about when I was a little boy in an Oral school that every now and then, parents or whoever, would come to my school and I am always the one to demonstrate how well I can speak and my other classmates never had that chance.
I might have been proud of myself at the time but as I grew up, I carried this guilt of how much damage that I may have done to other deaf children’s parents that was making the informed decision, oral only or not.
I just wanted to remind you that there will be a blitz in the CI community to use their “cream of the crop” kids to talk to you…Just like they used me at the oral school.
Still feeling bad about what I did,
John
January 11th, 2008 at 6:21 pm
I hear you, John. I was used, too, but not as extensively like yours. Maybe you should blog about your experience. But please don’t blame yourself. You were just a child.
January 11th, 2008 at 6:32 pm
Please remember as you are getting CI stories that age of implant makes a big difference. Please include this information with the stories.
My guess is that you will find a lot more unhappy CI stories from people who were implanted after age 4 or 5 than you will for people who were implanted by age 3 or before.
Most of the early implantees are still children. A few are teens, and there are a very few early implantees are now adults. There are probably only a dozen or so people who were implanted before age 3 who are now over 18 years old in the USA. Maybe that many more in the rest of the world.
To get firsthand info from many of these kids, you may need to actually see them yourself, since they are generally too young to give accurate info of their abilities. I highly recommend that.
January 11th, 2008 at 7:34 pm
Glad you are going to do this!
SUCCESS and FAILURE:
How do we define success with a cochlear implant?
How do we define failure with a cochlear implant?
I know a child implanted at age 5 and half after being exposed to ASL since infancy, thanks to her parent who sought the deaf community. She is not 12 and is bilaterally implanted. She still has the accent known as having a deaf voice. She prefers voice communication over sign language with her mother and the world at large. She is in competitive figure skating. She uses an interpreter in her classes and she speaks for herself. She plays the piano. She is reading on level, a great communicator, and has a high self esteem.
Is she a successful cochlear implant user? No, why? She uses an interpreter still? No, why? She has a deaf voice regardless of the fact people do understand her. She told me herself that she sees her life enhanced with the implants. I would say yes she is clearly benefitting from cochlear implants.
People will have different definitions of the word success and failure.
January 11th, 2008 at 7:46 pm
That is an excellent point Anna. Success or failure depends entirely on perception. Does having the implant make things easier or harder? Are you happy with it? Did you get what you were hoping for? It is all relative.
January 11th, 2008 at 7:49 pm
Anna S, you brought up an excellent question.
Would you please contact me at mishkazena@aol.com? I would like to ask you some questions. Thanks in advance
January 11th, 2008 at 8:21 pm
Here’s an article I wrote about cochlear implant journeys:
http://handsandvoices.org/articles/tech/V10-4_twiststurns.htm
January 11th, 2008 at 9:38 pm
Hey Mishka Zena,
You’ve got a great thing going here, thank you for doing this. I also appreciate the relatively flame-free dialogue going on in the comments section. (*Gasp!* Could we actually be learning from each other?)
Before I make my own point, I’d like to add that my son (who will soon turn 9) started rapidly losing his hearing at age 7 and now has an ASL interpreter in his school. And one of his best friends in school has a CI. It’s funny because if you ask my son if he wants a CI he’ll cringe, and his friend with the CI doesn’t show much interest in ASL… but regardless, they still get along great. Obviously kids are smarter than adults
Anyway, the point I wanted to make: regarding the request for more CI stories from the actual CI recipients themselves (instead of their parents)… I understand the “next generation” of CI users is too young to post here so that’s a bit problematic.
At the same time, I can’t help but be wary because when I was a kid, there were just so many teachers and hearing relatives raving about how great I was doing. I believed them. I really thought I was doing great. Not until I later attended Gallaudet did I realize that I’d actually missed out on a lot. I never spoke up in my earlier years because I didnt have a frame of reference. (This is similar to the “Met Deaf, Wow!” phenomenon that Gina Oliva beautifully describes in the “Through Deaf Eyes” documentary.)
So it’s through my own experience as a deaf person, not out of disagreement or disregard, when I’m not sure how to interpret it when I see a parent or medical professional speaking on behalf of deaf children. Perhaps this dialogue will help us learn more about each other.
Again, I’m enjoying the comments here and would love to see more from all perspectives.
Thank you for doing this
Best regards,
Drolz
January 11th, 2008 at 10:17 pm
I really enjoyed your posting. I am a bilateral cochlear implant adult. I have been lossing my hearing since age 3.
Our biggest question would be:
What makes a deaf child successful?
And
What makes a deaf child fail?
To me this answer is easy – family support!
talesfromacigal.blogspot.com
Valerie
January 12th, 2008 at 12:55 am
Listening should go both ways. How about ceasing the typical audistic view that a deaf child is better off being implanted; that the quality of an implanted deaf child would be enhanced with more choices; and that speaking is superior over signing?
It is unjust to expect acceptance and embrace from the Deaf community with their choice while having that misguided view about those people. *** I need to clear that it is the “choice” that most Deaf people do not embrace – not the persons with implants. ***
When I completed writing, I realized that it is way too long to be in this post, so I cut down to the above paragraphs, but that is not all I wanted to say on this subject. Now is not the time.
MZ, I look forward to reading your findings. All my best to everyone.
January 12th, 2008 at 6:17 am
Anna_S is right… it is something that I notice most of us ever forget. Everything we think, talk, etc., all comes from our own perspectives. We have no right to judge other people. When we judge them, we judge ourselves at the same time.
Hearing parents are right also… Deaf people have no right to come up to them and give them a hard time for making the decisions. Once they make decisions, LEAVE them alone… instead, support them, invite them to the activities, etc. Easy said than done, I know. Stop bemoaning about what hard lives the CIed children would have. This shows us that WE could use some education. This reminds me of the hysteria over AIDS when it first became known in 1980′s.
I know, I know… I did have a same attitude in the early 2000, before I went to Cochlear Implant workshop in Rochester, NY where I learned a lot about it After that, I changed my attitude and I got along better with hearing parents, because I was finally educated. Hearing parents tend to be more wary of deaf people due to the attitudes.
Failure and success are just relative words. I guess we will KNOW better in the next decade, due to many CI implantees being in young ages nowadays.
January 12th, 2008 at 8:15 am
One thing also to keep in mind is that the cochlear implant continues to improve. Five years ago, we didn’t have the accessories that today’s kids are getting with their implants. Five years ago, many implant surgeons had less experience and today, they have hundreds of surgeries behind them, lessoning the human error factor.
However, we will likely more stories of hard and soft failures rise because we have so many more people with implants today than five years ago but percentage-wise, the numbers may not rise because the majority of implants work as they’re supposed to for many years.
January 12th, 2008 at 8:28 am
Good Morning Everyone:
Here is my response (on the 8th comment)
Thank you,
Aidan
January 12th, 2008 at 8:43 am
Sorry about the link on #34. I just fixed it. I hope this time will work.
Good Morning Everyone:
Aidan’s response (the 8th comment at the bottom)
Aidan
January 12th, 2008 at 8:54 am
Anna S./Karen M.,
The reason why is that I cannot say that the differences between the older kids and the infants that received the CIs for the first time, is critical.
At this point, the FDA approved the six months old infants to receive the CIs in 2002. It is now the six years old.
I have no idea what the statistics are for the infants who received CIs in six years later.
That is the compelling debate.
I wish the FDA/NIH(?) could provide us the right answer.
White Ghost
January 12th, 2008 at 8:55 am
Aidan, the link appears not working…
)
January 12th, 2008 at 8:57 am
Yes, White Ghost, I understand your question. We won’t know much about it until the next decade about the success/failures. So right now we are making assumptions, which is a bit unfair to all parties concerned.
January 12th, 2008 at 10:12 am
Karen M. Thanks for letting me know about the link.
Here is it…
Hello Everyone:
I feel honored to be featured on Misha Zena’s blog. *LOL* I will never use my interviewees as competitors to show or prove that everything I said is true. Only time will tell.
I find it interesting that some people gave an instant response to my experience about not having a language the first six years of my life. They decided whether that is good enough or not. I actually am able to look at the whole picture. I have already done research on CI’s, interviewed people, and read extensively on the subject. I’ve met Deaf people with CI’s who have shared their experiences with me. I also met some parents of Deaf children with CI’s. Sharing my experiences will show that I’ve been there and done that.
I also find it interesting that parents often speak for their implanted Deaf children, seeing as though there were comment makers who tried to speak for me and describe who I am based on your interpretation of who I am. So how can I trust you after I witnessed you attempt to speak for me based on all the assumptions that you hold?
Here is what the FDA says about the benefits and risks of having cochlear Implants. Notice the list of risks is longer then the list of benefits:
Here is website: FDA’s Website
Two day ago I called a cochlear implant program at a particular hospital and asked the receptionist about hearing screening tests. I had to repeat my questions from time to time. I began to wonder whether or not there was something wrong with me. After ten minutes, she admitted that she has CI’s and sometimes she has a problem understanding what people say on the phone. I asked her how old she was when she lost her hearing. It turns out that she lost her hearing when she was 33 years old. I thought to myself: She is a receptionist and she is the first person on the frontline that the parents first meet when they come in for the second hearing screening test. I hope that parents will think to ask this receptionist how old she was when she became deaf, rather than just automatically assume that she was deaf since birth.
I also found out that hearing screen testing is in every auditory-type department, and that includes cochlear implant departments. So it is easier for parents to be refered to a cochlear implant department than it is for them to be able to get access to information of American Sign Language and Deaf people comprising a linguistic minority, instead of being a disability group.
I also learned that otolaryngologists first encourage them to use hearing aids. Having surgery is very risky and all doctors will try to avoid the surgery and consider it as being a last resort. If hearing aids fail, then they will be told to get cochlear implants regardless of whether there are risk factors involved. I asked the receptionist: “What about sign language? If babies are doing well with sign language, then they won’t have to undergo the risk of getting cochlear implants.” She immediately responded by saying: “I never tell anyone that sign language is a bad thing.”
Imagine, it’s the front desk. It’s the very first time parents meet a deaf person and they are assuming that all Deaf babies who have never heard sounds before will be hearing and speaking like this receptionist eventually. That’s scary!
I am not comfortable with the idea of cochlear implant surgery itself, cutting up a baby’s tiny head and banning them from being exposed to sign language.
Hi AnnaS…
Do you realize that most students who are ex-products of oralism didn’t become exposed to ASL until a later age? The new teachers of these students then have to spend inordinate amounts time teaching them everthing that they had missed when they were in the oral program that caused the jag in their learning.
Deaf children are struggling to learn English because they were denied the opportunity to learn a natural language as a first language at an early age and were only able to learn ASL later in life.
After firing all the teachers who supported ASL from Deaf schools, teachers who are not ASL supporters take their place. Just as Scott K. Liddell said in his book: Grammar, Gesture, and Meaning in American Sign Language, “A Teacher believing ASL was not a language would view such a child as, tragically, without language. This has an obvious effect on how the teacher will interact with the child, what can reasonably be expected of child, perceptions of the child’s intelligence and readiness to learn, and so on.” The third reason is that there are no ASL classes at Deaf schools because these schools do not recognize ASL as being a bona fide language, even though it already been recognized by linguistics as being such. There’s too much red tape involved in getting it recognized.
I never met a Deaf teacher at any school I atttended until I attended Gallaudet University. I was in awe when I met Deaf teachers who are superb at the skill of writing English, which is something they are able to do because they had ASL as a first language.
Any students who were exposed to ASL at very early age will do very well in learning English as a second language, or any other language they choose to learn. For example, Deaf children of Deaf parents tend to have strong skills in writing English compared to Deaf children of hearing parents. This is because deaf parents start to communicate with them in a visual language right after they are born. Ella Lentz, Raychelle Harris, Roz Rosen, Ben Vess, Barb DiGi, and Bobbie Scoggins all have Deaf parents. Such is the case with them also with many others. While hearing parents are too busy finding the right method for their Deaf babies, they have a hard time communicating with them because they aren’t using American Sign Language.
Look at hearing babies who are exposed to sign language: This morning I saw in the news that there was a girl who was maybe 9 to 12 months old, and she can associate English words with particular signs and is able to identify English words through signing. Awesome. I suggest you do some research on the topic of hearing babies who sign.
For Jodi:
I am confused a little bit about what you said in your comment: “The only thing I can’t accept is being called judgmental, having lived through the pain of consciously deciding to concentrate on an oral approach despite acknowledging, respecting and loving his deaf identity and all of the incredible history associated with it.” In another blog you actually did judge us by writing: “There are too many judgmental voices unwilling to take a liberal stance in regard to the cochlear implant and hearing parents.” Are you telling me to just forget about these Deaf children with CI’s who are not succeeding as expected? Are you telling me it’s not worth hearing what these parents of Deaf children with CI’s have to say about their negative experiences with Cis?
I guess I took it wrong when you said that we could have an open dialogue and be opened minded, because you ended up claiming that I supposedly attacked you on your blog, and you used the phrase: “Mack Attack”. The irony is that you had previously written: “I really appreciated receiving your thoughtful comment.” Now all of sudden you claiming that I attacked you.
Have a great weekend…
Thank you,
Aidan
January 12th, 2008 at 10:17 am
Actually, the FDA guidelines still specify age 12 months. However, because the CI is FDA approved, surgeons can choose at their own discretion to implant earlier. The only hurdle for parents choosing earlier is getting insurance approval. That is why implantation before age 12 months is still not the norm.
January 12th, 2008 at 11:16 am
Gosh, I have a hard of hearing son who functions quite well (comparable to a kid with the implant). He lost his hearing at the age of 7. He speaks well. He is a teenager now and attends his local high school. People would say, he is a success story, he is mainstreamed in his home school! He is not. He is lonely and withdrawn. He has no friends at school, only a few deaf and hoh friends outside of school. He comes home everyday discouraged. I made the difficult decision to send him to the school for the deaf in our state. He needs a social life, he needs interaction with equal peers.
I also have a deaf son who so happens to have the implant. He is doing so well with it, I am amazed at the progress he is making. However, he was very unhappy in the school he was attending. He was struggling with school. There were not that many other deaf kids in the school. He started at the school for the deaf a week ago and he just loves it.
Flexibility is key. I had said years ago I would never implant my son. I said I would never send him to a school for the deaf. Decisions are not set in stone. Every child is different, needs and circumstances do change. . .
January 12th, 2008 at 1:19 pm
I’d avoid questions that promote evaluation like SUCCESS and FAILURE. Everybody has an opinion. That is HEARING PEOPLE THINKING. Forget about my culture, history, and language, let’s go for results. This cycle of ignorance never stops! This is very insulting to someone who has long history of deafness in family. I’m more interested in *acceptance and inclusion*. Respect and playing fair toward those already ingrained with ASL and Deaf life. Aidan Mack is far more interesting to me than any hearing parents w/ children with C.I. She doesn’t need devices of technology to define who she is.
January 12th, 2008 at 1:50 pm
I have to agree with what drmzz said. Ann s must imply that she keeps CI which will become successful.
January 12th, 2008 at 2:25 pm
Aidan, I had to respond to your comment (highlighted below).
“Any students who were exposed to ASL at very early age will do very well in learning English as a second language, or any other language they choose to learn. For example, Deaf children of Deaf parents tend to have strong skills in writing English compared to Deaf children of hearing parents. This is because deaf parents start to communicate with them in a visual language right after they are born.”
I have to disagree there. I was born to deaf parents (I, myself, am HOH), & have a younger sister who’s deaf & my youngest sister is hearing. My deaf sister never did all that well in English at her deaf school, even though she had a tutor. To this day, she’ll still switch words around, use them in the wrong context, etc. It all depends on the PARENTS to teach their kids language, but what happens if the deaf parents themselves don’t have a good grasp on the English language? Their children will struggle in the same class they, themselves, did when they were in school.
Also, suppose this: Let’s say the parents are dirt poor & being as such, they have NO money to pay for a tutor for their deaf child(ren) to learn the sentence structure of the English language. & let’s also say that the parents have no knowledge whatsoever of any organizations or government assistance they can get to be able to do that. HOW, then, will the kid(s) learn English if they have had NO exposure to it from the time they were born till they walk into school for the first time 5 years later?
Also for the “D/deaf” thing people are using in the comments above: Why don’t you (IN GENERAL, not to any specific person) all accept that you’re ALL deaf & eliminate the D/d distinction? No one is MORE deaf than any other person here.
Just a few thoughts.
Thanks for reading,
Meagan
January 12th, 2008 at 3:18 pm
drmzz: What, pray tell, is “hearing people thinking?” That reference itself smacks of intolerance toward those of us who happen to hear. What’s wrong with the way we think?
Of course our implanted children are not defined by their implant. Rather, they are free to be defined by their personalities and interests.
Meagen, your point regarding signing and language acquisition is interesting. For some reason, a lot of people seem to believe that parents (hearing) who give birth to the vast majority of deaf babies, will miraculously be able to speak in complex ways with our children using ASL. This is far from the truth. Learning a new language in adulthood is always hard, and to use it fully while learning it is… impossible. Research about language shows that complex language must be used in the presence of babies, even when one thinks they “can’t understand.” We would actually stunt the development of our children if we relied on sign language to grow the brains of our kids. So, we are using the language we know (and, conveniently, most of the rest of society). This is going to be the best for our families and for the kids. Since this has worked and continues to work very well for implanted kids, parents tend to make the same choice when they have a 2nd or 3rd deaf child, and tell others (or, perhaps more importantly show other parents).
Aiden, comparing lists and counting up risks vs benefits is not the way to calculate the benefit of a CI, particularly for a baby born into a hearing family. The benefit of hearing in a hearing world, for that child, is immeasurable. And from a financial aspect, it will cost society a lot less, too. It is not a good idea to compare deaf children of deaf parents with deaf kids of hearing parents and assume that both sets of kids should be taught sign language. Obviously, the results will be different due to the level of ability of the parent. No one doubts that the 1-2% of deaf children born to deaf parents will become fluent in sign language if their parents already are. Regardless of implantation status. But the kids born to hearing kids, now that’s another story. They were typically behind. Today, all that has changed. IF a child is appropriately identified, amplified and allowed to be implanted (if a candidate), the child can expect to progress commensurate with their hearing peers and, thus, be able to communicate smoothly with their hearing family. This is no small potatoes.
January 12th, 2008 at 3:53 pm
If we are fighting militancy on both sides – whether for or against CIs – than we may be starting in the wrong place. It seems to me that anyone who has been lied to or otherwise deceived in any significant way will tend towards militancy. People who are militantly against something are usually focusing the energy of their pain onto a particular issue. For instance, deaf people who have been lied to about oral training and been very hurt by it are not likely to believe anyone regarding oral training with CIs either. They are not even likely to believe the children who were implanted early because they will suspect that these children have been deceived. Unresolved hurt and betrayal will not allow them to trust. The same is true for those who are militantly against their children learning ASL. They likely have unresolved pain in another area of their lives (it’s harder to give an example here because there are so many possible sources of their pain). Since we know about the deception and subsequent pain that many in the deaf community experienced, I think we need to start there. They deserve to be heard and understood. If we have contributed to their pain, we need to apologize. Those who have been hurt will need to work through to a point of forgiveness. That’s the only way to begin to trust again. The steps toward building trust may take a lot of time but they’re worth taking. What we can offer to the world will be so much more powerful if we are united. And, we can only be united if we are willing to trust each other.
Who am I? I’m a hearing mother of a daughter who was born HOH and after 4.5 yrs is now deaf.
Cheryl
January 12th, 2008 at 5:45 pm
Yvonne, the point I was trying to make was this:
My dad was born to profoundly deaf parents. His written English is HORRENDOUS, as you would expect from a profoundly deaf person who’s always struggled with English. His younger brother (moderate to severe hearing), has no problem with written English… & they both went to the same schools, etc. & had very little exposure to the “hearing” world until after they graduated from school.
My mom, on the other hand, was born to hearing parents, had 4 siblings who were hearing & another who was deaf. My mom LOVES English, & while her written English is on par, she will sometimes “lose” punctuation & very rarely use a word in the wrong context. Her sister’s English, on the other hand, is on par with my dad’s, but that’s pretty much because no one knew she was deaf until she was 9.
So, to make a blanket statement that “deaf parents of deaf children have stronger written English skills” without taking into account individual needs, is wrong. I have met MANY hearing people whose written English is unbelievably atrocious that I wonder how they ever passed the subject in the first place! So in that case, how would you explain that away if they grew up knowing language & their childhood was relatively free of traumatic experiences? (By “traumatic”, I mean nothing out of the ordinary broken arm/leg by falling out of a tree or something. Most everyone has broken a bone in their life.)
Cheryl, that’s a great point you bring up. However, I feel that some of those who were deceived will reject any attempt at apologies, for whatever reason they might have (ie-”Too little, too late”, etc.). It’s a noble idea, & one worth pursuing though.
Meagan
January 12th, 2008 at 5:56 pm
MZ- thank u for initiating this dialogue and moderating the post
cheryl – thank u for ur comment #46
i do think this is the heart of the matter – first and foremost
trust
CI in children are a very very complex topic
we need to trust that hearing parents (and d/Deaf parents who choose to implant their children) LOVE and CARE and CHERISH their children
we need to trust that Deaf Community members and Deaf advocates LOVE and CARE and CHERISH these children
perhaps an assumed safe place to begin is:
1. that parents will not try to actively exclude a natural sign language or visual acuity from their deaf and/or Hof H child’s life
2. that the Deaf Culture will not try to actively exclude a non-signing child with CI and/or her/his parents from being part of the Deaf community
i think this is the concept of bilingualism and bilculturalism
that it would actually be alright and might even be desirable to raise a child with more than one language and more than one culture
the US is notoriously monolingusitic and American-centric on the whole (not for all of course) – this also trickles into the Deaf Education picture. aural / oral only programs – omit a part of a deaf child’s natural acuity that could be a huge asset
any ASL only advocate that does not foster English acquisition also falls prey to a binary approach
MZ – a good article u might find informative is:
fjord, lakshmi, “voices offstage: how vision has become a symbol to resist in an audiology lab in the U.S.,” Visual Anthropology Review, Vol 15 no. 2, fall / winter 1999/2000
there are alarmists on either end of the spectrum
A. some parents saying my child is NO LONGER DEAF because the CI has restored him/her to hearing society and has no need for a visual language and i cant/wont learn it cuz u all r just a bunch of crazy whining extermists anyways and thus i want my kids to have no part of ur “culture and community”
B. some Deaf folks saying your implanting your child and not learning sign and denying your child the right to sign language is evil and wrong and sinful and you are obviously an uncaring abusive parent and ur children will hate u when they grow up
Thankfully – neither of these extreme groups make up the majority
the majority of parents – are open and questing and really seeking out to “do the best and that which is right by their babies”
the majority of Deaf Culture people – are open and questing and really seeking out how to “do the best and that which is right by the babies and their parents”
all the hype that the newest and the best CI “cure” a deaf child to the point that s/he is hearing really flares up these extreme emotions and reactions
the hype may also breed false hopes and expectations and unnecessary fear and paranoia
peace
patti durr
January 12th, 2008 at 6:42 pm
A must read article for ALL of us posted by American Society for Deaf Children titled, “Sign Language Use for Deaf, Hard of Hearing, and Hearing Babies:
The Evidence Supports It.”
http://www.deafchildren.org/resources/6_Sign%20Language%20Use.pdf
January 12th, 2008 at 6:49 pm
Aidan,
It was Mack Attack?…a question, not a phrase and what I wrote to you on your blog holds true- I hope I clarified that in my last blog. Unfortunately, the fact that I was welcoming dialogue with you and others was unclear to many people…You have very strong views, most people who are passionate about a lived experience do. I feel very passionate about my experience, as well. As I said before, I look forward to sharing views and experiences…Jodi
January 12th, 2008 at 6:50 pm
(#49 WAD) It is a snapshot. For people who want to learn more, here is full document– http://www.deafchildren.org/resources/49_Sign%20Language%20Use.pdf
January 13th, 2008 at 1:39 am
I am very interested in how this survey turns out. I’m a recent recipient of a CI but before that I have been deaf since I was four and mainstreamed orally with no sign. I was born in the 1980s and my school systems had no idea how to deal with me. In the meantime my parents were trying to teach me how to sign. When the school finally got a clue, they started me with a speech therapist and refused to teach me how to sign and my parents pressed them for the importance of being able to have a back up language. I chose speaking and I refused to learn how to sign. Why do you ask? It was different from all the other hearing kids. I just wanted to fit in and talk/hear like them. A deaf child really goes through a major identity crisis in those years of puberty.
I am now in my late twenties and when I lost my hearing last year leaving me with not so much as the slightest audio cue with my super powered fancy schmancy digital hearing aid, it left me in a really hard position. I always thought I was a great lip reader being able to read lips from 20 feet away but when you can’t hear a single thing, it is extremely hard. It isn’t so much as yours eyes straining, it the exhaustion of trying to pair a sound with the movement. This is where knowing sign language would have come in handy that is if both my elementary and high school had the means.
The simple act of something asking me if I want water would have been so much simpler if I knew both ways of communication. Even if I did know sign language, who would I sign to? My answer in the past was no one but I could have signed to teach others to sign to me.
January 13th, 2008 at 2:34 am
MZ, thank you for posting this blog with a reasonable viewpoint of CI in young children.
Have you interviewed any Deaf parents with CI children who are bilingual in ASL and spoken English? I am one of very few Deaf parents who gave CI to our very young deaf children. My daughter has been progressing very well with CI since she has received CI at 1 1/2 yrs old. She uses both ASL and spoken English. Her therapists including AVT believe that she could catch up with the spoken language at around age 3. It would never have happened with hearing aids and she rarely benefited from the aids and kept taking them off before she received CI. Now she wears the CI all the time and doesn’t even want to take it off at bedtime. She even enjoys AVT probably because she has access to all the sounds with the CI. I would consider her successful whether she could speak or sign because she is developing appropriately in the all the aspects of children’s normal developments. I wanted her to have the best of both worlds – hearing and Deaf since we come from large hearing families. It s probably a little more challenging for me and my husband as Deaf parents (ASL users) than hearing parents to give our deaf children CI and commit to their intensive training. The number of Deaf parents with CI children seem to grow gradually although most Deaf parents don’t give CI to their deaf children. I look forward to your research and feel free to contact me.
January 13th, 2008 at 1:53 pm
Cheryl (#46), I am glad you posted that comment, and I hope more people recognize that and take that approach.
You’re absolutely on target with what you said. And that’s why I think it’s sad that there’s not adequate mental health counselors who speak ASL. What has happened in the past has left a huge, immeasurable scar on the Deaf Community, and that does need to be recognized by the hearing world.
Thank you again, Cheryl.
~ A Deaf Pundit
January 14th, 2008 at 11:36 am
To A Deaf Pundit -
I felt really sad when you said that “there’s not adequate mental health counselors who speak ASL.” Everyone needs access to people like this to process their pain – whatever the issue and in whatever language.
Speaking for myself, I am very sorry for the pain that you and others have experienced in your contact with the hearing world. We have been, at times rude, dismissive and thoughtless in the way we have treated you. I know that in the past I have contributed to the pain by being afraid of looking stupid or something and not choosing to work at communicating. I am not real comfortable with initiating conversation with anyone I don’t know or pursuing it when I don’t know what to say. In avoiding conversation I am sure that I was at the least thoughtless and probably downright rude. It was not my intention to be rude but I realize that they could not know my intention. I am very sorry.
I’m also hoping that by being a good listener to people I come across is a step in the right direction. “Listening” to me means that I can accurately reflect what the other person is saying so that they know I understood what they said. It means that I do not minimize whatever they said. Part of the problem in this kind of internet dialog seems to be that we are so quick with our responses about our thoughts/experiences that we don’t take the time to try to understand what was actually said. It seems to add to the pain or confusion. I know I have been guilty of this at times.
Hoping for constructive dialog.
Cheryl
January 14th, 2008 at 9:21 pm
We got our 2yo a CI this summer. Hands down the hardest decision we’ve ever made. Our stance towards his education is staunchly bilingual. We have received from flack about the CI from the Deaf community, but whatever, I understand the background. We have also received a lot ignorance for the hearing the hearing community. (we’re hearing parents). I did want to share something my husband wrote on my blog last summer. I think it gets at the heart of a lot of what has been said so far in the comments, including the relative definition of “success”.
Hubby:
“Thank goodness that Ellis doesn’t have to be ruined by [our mistakes], though. For all the talk here about identity, sense of self, etc., I have to say that our view of Ellis’s personhood is limited neither by his deafness nor, should he have been born otherwise, his hearing. I hope that Ellis is a full enough person that whether he hears or not, whether he thinks of himself as Deaf or not, he finds a way to live an honest and honorable life in whatever circumstances he finds himself.
There is no way to save him from suffering. There is no way to avoid limiting his choices in some fashion, try though we might. In the end, whether hearing, deaf, blind, paralytic, male, female or neuter., we all have the same basic choices to make about how we will live with respect to our limitations. The choices that Ellis makes in this respect will determine the quality of person he is, and whether or not he merits our respect (he will always have our love). ”
I think he puts it all in a very healthy perspective.
January 15th, 2008 at 6:58 pm
re: 56 – well put
unconditional love – really parents are the key source of this and the foundation of a “good” human being
best wishes with Ellis – definitely off to a good start
peace
p
January 15th, 2008 at 8:45 pm
I have to applaud many of the people posting here as I have never seen such a constructive thread on this particular subject! I am the parent of a now 15 year old. He is going to post here later today to talk about his experiences.
The one thing I wanted to tap into was the notion of what is a successful child? The reality is that in the very early days (pre CIs) I suspect that some educators did push speech and language and that in of itself determined success. The notion of development of self, of a feeling of belonging, of having social skills, friendships in the mainstream were perhaps to them less important than speech and language. I can tell you that our experience has certainly not been that!!! A large part of determining his success has been the measurement of what I call “true inclusion”…that is not inclusion in the sense that I suspect some readers here experienced in that students were stuck in a classroom and taught with the other kids, and that was it, that was meant to be inclusion! I mean true inclusion where the students are fully involved, valued members of their class groups, their school communities. That they have friendship groups and all that goes with that.
Maybe some of the readers here feel like the educators and professionals working with deaf children haven’t learned from past mistakes but I truly believe that they have. I think the advent of CI technology has made it so much easier for our kids to hear and learn to speak BUT I also believe that an acknowledgement by all that this is not in itself a meaure of success has also changed things. The notion that we must look at the “whole child” not just a measure of their speech and language is very much a part of the professional/education setting for those that provide support to our kids. It is this combination that is changing the face of things today, and the well rounded individuals we are now seeing as a result.
January 16th, 2008 at 12:29 pm
Another mum, I agree with you. I have not gotten the feeling from any of my discussions with parents that the deaf child today, regardless of methodology, is having to swim upstream in the manner of ones in the mid-20th century. I hope that we’re right.