AGBell Hears From Its Own: The Need for Multi-Sensory Input
By Guest Blogger on Mon 29 Oct 2007 |
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By Aaron Rose
This summer the AGBell Talk for a Lifetime Summer Conference took place in Arlington, Virginia (the same one where the AGBell protests took place). The focus was current research and applications in the field of neurodevelopment and its relationship to auditory processing and language development. Keynote speakers connected their work to spoken language, auditory brain development, and readiness to learn in infants as well as older children. The goal was to create strategies for “managing demanding caseloads“. As we all know, AGBell’s campaign “Hear from the Start: Talk for a Lifetime” implies that spoken language is the overall goal for deaf and hard of hearing children. Surprisingly, one of the founders of the Audio-Verbal Therapy (AVT) approach shared, in front of many auditory-verbal therapists, professionals, and parents, that visual input is just as important as auditory input in language development and literacy for deaf and hard of hearing children. Party-line AVT proponents chose to ignore these assertions while thanking the keynote speakers for validating the AVT approach.
A Summary of the Keynote Presentations
Dr. Anu Sharma, Ph.D. and CCC-A at University of Colorado at Boulder and University of Texas at Dallas, gave a presentation titled “Central auditory development and plasticity in infants and children with hearing aids and cochlear implants.” A significant finding in her research was that children implanted under ages 3-4 years had better speech perception and language skills compared to children implanted at a later age (6 years or older). She drove home the point that the earlier the implantation, the better off children are in regards to speech perception and language.
Dr. Janet Werker is the research director of the Infant Studies Centre in the Department of Psychology at the University of British Columbia, which focuses on speech and language processing. Her presentation, “Infant Speech Perception Sets the Stage for Language Acquisition,” focused on the way children’s perception of spoken language plays a role in the development of their home language. According to Dr. Werker, language has many properties such as speech sounds, rhythm, sound sequences, and syllable structure (all aspects of phonology). What sets apart languages lies in the difference in those properties. In order to retrieve and process words from print, it’s necessary to understand these properties and connect them to their meaning. Through previous research Dr. Werker found that infants also gain information from what she describes as speech-reading (reading lip movement and facial expressions) along with auditory input. Therefore, infants are just as sensitive to visual information as they are to the information contained within signed languages.
Dr. Werker also touched on another research that included auditory and visual speech discrimination in babies and adults. She contrasted speech across different languages, soundless phonetic units in ASL and the lip movements that accompanied specific speech sounds. Werker said that native speakers of a certain language would be prone to discriminate that language better than non-native speakers (the same way natural lip-readers can pick up more of what a person says without hearing them). She claims that babies “prefer native language(s) from birth.” Werker also concluded that listening facilitates word learning through awareness of the structure of native languages, i.e the foundations. In processing language, children can use this ability to perceive these building blocks. By diagnosing the ability to comprehend the foundations of language, one could possibly estimate future language delay in children.
The third keynote presentation was given by Dr. Maria Mody, who works in the Developmental Language and Reading Research Laboratory at the Antinoula A. Martinos Center for Biomedical Imaging as the principal investigator. The lab carries out research regarding reading, language and attention disorders, with little or no focus on deaf and hard of hearing children. In her presentation “Neurobiological Correlates of the Language-Literacy Connection in Normal and Atypical Development,” she describes the connection between phonological processing abilities and reading skills. According to Dr. Mody, at the heart of reading disabilities is a lack of understanding in the phonological component of language. Phonological processing is the ability to break down words for speaking and listening and making the connection speech (or spoken language) to written language. She describes the relationship between language acquisition and reading development as being dependent on early exposure and full appreciation of the phonological characteristics of one’s language (phonemes being the simplest units of language without meaning, but not necessarily tied to sound).
Dr. Mody said that 10-15% of children have issues with reading despite typical intelligence, motivation, education, lack of neurological issues, and normal sensory perceptions. She describes a common predicament in hearing children, Developmental Dyslexia, as being caused by a breakdown in recognition of words, decoding, and spelling. Characteristics of Dyslexia include speech perception in demanding situations (i.e. noisy environments), phonological awareness, verbal memory, and lexical retrieval (pulling from your brain’s dictionary) (Author’s note: These symptoms can also be found in deaf and hard of hearing children who have issues with language and literacy). In her research, Dr. Mody examined the brain’s structure and its functions to determine which areas are important in reading and auditory discrimination. During her presentation, she discussed the results of two studies that focused on auditory discrimination of phonologically similar vs. dissimilar words (i.e bat/pat vs. rat/pat). One study focused on discrimination of isolated words while the other included sentence context (Authors note: A deaf person, whether through hearing aids, CIs, or lip reading, could have difficulty telling the difference between bat and pat if one didn’t make a reference to baseball or the mammal, hence the need to understand how context plays a role in hearing people with reading issues). Dr. Mody concluded her presentation by stressing the importance of early and appropriate intervention based on critical understanding of reading disorders as the key to successful remediation.
Seeds of Change
As expected, the contributions of American Sign Language (ASL) and Cued Speech to the reading abilities of deaf and hard of hearing people were not discussed at length, if at all. Given the nature of the conference organizers, Auditory-Verbal proponents used the findings to bolster arguments in favor of their approach. Yet, something else, unexpected, took place.
Pamela Beck, former president of the National Cued Speech Association, who attended the conference and wrote a report, published in the fall 2007 newsletter of the On Cue, found that the majority who attended the conference were not professionals, but parents who had many questions that were left unanswered. She explained that in discussion groups and panels, parents would often ask about bilingualism, multiple disabilities, and insufficient progress in older children, only to be ignored.
The most surprising turn of events at the conference came when Ellen A. Rhoades, an AVT leader, bilateral CI user, allegedly is “the world’s only totally deaf certified auditory verbal therapist”, and a member of the conference program committee said that AV therapists were wrong to “cover their mouths and insist on a unisensory approach,” citing research that indicated the need for a multi-sensory approach. This statement was a bold departure from current trends in AVT.
While a number of individuals stood outside the hotel protesting the AGBell organization, the true seeds for change had been planted inside the conference. These seeds could lead to a significant shift in the field of deaf education, especially pertaining to the need for visual input for deaf and hard of hearing children. ASL is a visual language in its own right and Cued Speech is an avenue towards visualizing spoken language at the phonemic level. Could both modes of communication be used as the standard dual approach to ensure that deaf and hard of hearing children get the auditory and visual input they need to increase their chances for success in literacy and language? Only time will tell whether AGBell will change its practices, and incorporate ASL and Cued Speech in its methods.
Aaron Rose, a recent graduate of North Carolina State University in Raleigh, NC, just relocated to Oakbrook Terrace in the suburbs of Chicago, Illinois. He is enjoying his time off before returning to school for studies in Education of the Deaf and Hard of Hearing. Aaron spends his free time searching for places to surf on Lake Michigan, reading intellectual narratives, and putting together challenging puzzles. Aaron, a native cuer, is also eagerly improving his signing skills slowly, but surely.
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Aaron,
Thank you so much for reporting this, and I am very intrigued of Ellen Rhoades’ comment which she made at the AG Bell conference. Where you there to witness her comments? I am pleased to hear what Ms. Rhoades said that is indeed a bold departure from the traditional trends of AVT! Especially from a person who is deaf!
Thank you so much!
Amy Cohen Efron
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Aaron,
Much of what I have to say is in appreciation of your reporting on this event. I will add further comments later on when I have the time to fully look at the links you’ve provided. I appreciate it whole-heartedly.
[…] and as young adults. BTW, the link you gave us didn’t work. You should be able to find the link here. __________________ Left ear implanted with Med-El on April 24 2007. Activated on May […]
FYI, I am pretty certain that you are misinterpreting Ellen’s comments IF you are assuming that she is referring to using ASL as a visual aid. Ellen is a dyed-in-the-wool AVT, and while she would support your choice to choose your own communication method, I do not believe that she is endorsing AVT kids adding in signing to the mix! Check out her website if you want to see what Ellen believes: auditoryverbaltraining dot com
Clearly, all people, including hearing and implanted kids, use visual cues. Using the hand cue is rarely even done in AVT anymore, and when it is done it is more to see if the child can duplicate a particular sound in isolation, while it is not something that is done all the time. My kids have no trouble whatsoever deciphering the difference between similar sounding words, even in isolation, due to their cochlear implants and early age of using the neural pathways for hearing. They are hearing all day long. AVT does not discourage normal visual cues; it simply discourages overemphasizing them by using a manual language or pure lipreading.
I think you will be disappointed if you think that Ellen’s comment would change the path of AVT today in the world. BTW, the founders of AVT, formerly the acoupedic method, are Helen Beebe and Doreen Pollack, both of which are now deceased.
To Mother of CI Kids,
Please go ahead and read Pam Beck’s article on National Cued Speech Association’s “On Cue”, Volume 20, Issue 3 - Fall 2007. Look at page 10 how Ms. Beck described Ms. Rhoades’ comments, and how this comment caused “a loud hush in the audience”.
Ms. Rhoades is deaf herself, and she is a certified AVT therapist, and she is a founding director and charter member of Auditory Verbal International and past director (six years) of the Alexander Graham Bell Association for the Deaf. What she is trying to say that the multi-sensory approach is needed, and does not believe in covering the mouth for young children because it precludes joint attention and eye gaze.
The National Cued Speech Association and ASL users are deeply concerned about the lack of any visual cues (ASL, cued, lipreading, or anything) during the AV therapy sessions.
I am deeply shocked how other AV therapist would have ’scoffed’ at the DEAF AV therapist, and ignoring her comments? Ignoring the deaf professional’s comment is an act of audism at the purest form.
No matter how many times or how often the Deaf professionals are trying to present information what will work for deaf children, yet still be scoffed and hushed by the hearing people who deemed to know the best way to teach deaf children how to acquire language through auditory means.
That is truly bothersome to me.
Amy Cohen Efron
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Thank you Aaron for sharing the inside information of the AG Bell Conference. We have seen more professionals than parents at the conference and it is surprising that your findings showed differently.
Now to the point:
“Pamela Beck explained that in discussion groups and panels, parents would often ask about bilingualism, multiple disabilities, and insufficient progress in older children, only to be ignored.”
From what Beck has stated, it is evident to me that AG Bell is eluding these controversial issues. I feel bad for the parents not being able to get support to find guidance or referrals that will help them answer their questions.
Based on AG Bell’s website:
http://www.agbell.org/DesktopD.....tice_Model
it was committed to provide disseminating information to parents about communication options based on the so-called five “best practice” criteria. Your report gave me proof that AG Bell did not act on the best interest of parents by providing them unbiased information especially about bilingualism which is supposed to be one of the early intervention five “best practice” criteria. What a joke!
*handwaves*
Excellent blog post, good to see you online.
Thank you for your report…it gives me hope that someday the different camps of education will eventually come together and arrive at a balanced approach that helps far more children than now. Kudos for paying attention to this tiny but hopeful trend!
I read the comments, and it’s glaringly apparent that the report of the convention is by a person who is a serious cueing advocate. So she would not like the fact that AG Bell has espoused and supported the Auditory Verbal method. Her entire report smacks of someone who is still smarting from this development.
I am well aware of Ellen Rhoades background. She is in NO way an advocate of ASL for children utilizing the AV method.
There is no credibility to the article which claims that parents concerns were hushed or ignored. Simply using the term audism shows that you have no ability to put any faith in a hearing person’s right to know about and see the benefits of hearing. No one goes about calling deaf adults “deafists.” But the Deaf Culture advocates behave as if they own children who share no commonality with them besides their biological lack of a 5th sense prior to implantation. Kids who are implanted share that 5th sense with their parents, and get to reap the benefits.
As someone who has seen that my kids do not need extra visual input, I find it nonsensical that these comments by Ellen would be taken as some sort of advocacy toward extra visual input for deaf children. I suggest you ask if she is espousing sign language. No one disputes the fact that all kids have 5 senses and learn with all of them. The great thing about early implanted kids who receive appropriate auditory input is that they have no need for extra cues, whether it be hand cues or sign language. If you had ever seen AVT in action on a regular basis– in the home, in the therapy rooms, and in daily life– you would know that we don’t go about covering our mouths all the time. All senses are treated NORMALLY, and no one sense can then take over neural pathways which were intended for use by the other.
There is no call for bilingualism in early implanted, speaking children unless you are referring to two spoken languages. They do very well without sign language. No doubt the deaf adults who oppose this would prefer that they fail, but the fact is that large numbers of them are going about their lives in a very normal fashion. They get to speak to their loved ones in their native tongue, and they get to participate in all facets of school, church, sports and clubs.
Ms. Rhoades may have caused a hush, but that may be more likely because of the way she delivers messages. No doubt all of the attendees already know that all senses are in use when one is listening and speaking because it is impossible to “turn them off.” To announce this as a “new development” is likely seen by some as a non-issue, since it is not new nor is it groundbreaking. The issue at hand is how to help newly implanted or newly aided kids get their brains learning to listen, and that is what AVT does best.
I’ve spoken with Ellen Rhoades personally and she affirms that she still believes auditory input is very important, yet she understands the importance of multisensory input for children who need it. Your children may not necessarily need it since they could have received the best therapy and benefited from a mother who’s deeply involved in their language development.
Not every child can benefit from cochlear implants (lack of auditory nerve or cochlea for example) so it still remains important to consider all the options available for a deaf/hoh child.
Also 40% of deaf/hoh children have an additional disability, heightening the need for additional support that AVT may not provide. Why does Child’s Voice (a private oral deaf school in Northern Illinois) only accept children with hearing loss and no other disability? To ensure high success rates?
The heart of the issue at hand here is not deaf culture here, but literacy and language.
Infants are just as sensitive to visual input as they are to auditory input. Cued Speech can be used simultaneously with spoken language as a way to ensure children absorb language continuously without interruption. ASL can also visualize ideas and concepts that are difficult to explain verbally.
Still, it’s up to the parents to make their own choice and be aware of the consequences if the cochlear implant fails to meet their expectations.
- A CI user since 6 years old
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Aaron, thank you for your emphasis. I understand that Rhodes still believes hearing is important and I’m glad that she recognizes that more and more deaf children have additional disabilities and that makes it harder to succeed with one approach. It’s important to have multisensory approaches because some children learn differently. Some are visual learners, some are auditory learners, some are tactile learners. So one approach is not necessarily the best approach. I agree with you that it’s important that parents understand once you give children cochlear implants, they must understand the possibilities and consequences instead of trying to succeed with one approach. I don’t like that. And you are right — more and more AVT clinics do choose children who are deaf only, and who do not have additional disabilities so they can show the best data. I’m angry - that’s not fair. That’s a little skewed, and who will handle the rest of the kids? Deaf schools or some large mainstreaming programs or small mainstreaming programs? So I agree, with what you just said. Thank you, Aaron.
(Amy — I hope I did your comment justice!)
Several points to make here:
1) While it’s nice that the CI works well for your child, the Deaf Community can show you 4 failures for your one success.
2) I’ve also seen many people call Deaf people ‘Deafists’. So your point about calling people Audists is moot.
3) Really? It’s impossible to not use all 5 senses while listening? Okay. I have a question. How do we use our touch sense while we’re listening? Smell sense? Taste sense? You seem to be an expert on this, so please share your profound insights on this subject.
4) it is *common* practice in AVT for the teachers to cover their mouths as they attempt to train the child to understand spoken words. I know, because there’s an AVT program right here where I live, and it’s used on a daily basis, and OFTEN.
Lastly, I resent your implication that only people who can hear lead normal lives. I’m profoundly deaf, and I do not speak very well, but I lead a very normal life, thank you very much.
Amen!
Soit!
“They do very well without sign language. ”
I am sure it’s true that they are doing very well, and that is great. But how can you know that they are doing their Best in all regards if you aren’t open to considering other tools that could help them? I often wish my sign language skills were better so I could follow an interpreter in certain situations. I too do very well, but I know I could do better.
I knew there were capital-D-Deaf people who seem militantly against CIs… but I had never come across a hearing person so militantly For them. If I were a hearing parent trying to decide what’s best for my deaf kids, I’d be very wary of anyone who didn’t believe in exploring all methods of developing language.
Dear Mother of CI Children,
It sounds as if your fondest wish is to have children who are functionally hearing and never use ASL either for social or educational needs. If their CIs have given them normal hearing, they are blessed indeed because this is not usually the case with most kids who have CIs and obtain some, not total benefit from them.
I heard my mother in you, God rest her. She would brag about how many words I could speak when I was small and impressed upon me that signs were ugly and for less smart children. This attitude persisted all her life -and caused a split in my family that exists today, years after her passing on. This is unfortunately common in the wider deaf-hearing family community.
Not my kids, you say. They are hearing and doing well. Perhaps that will be true. I hope so. My mother said the same thing: “not my daughter”. She changed a little when she was too old to make amends. All she could say was the ILY sign, her last communication to me before she died.
In her denial of my deafness, she and her family made no room for my deaf spouse, my deaf son and my CODA daughters. My friends and interpreters were barely tolerated. As I found my home in the large and intensively supportive Deaf community, her family faded into the past. This was not meant to be, but was the effect of strict application of Hearing standards.
So, if you want to hear the daughter of a mother like yourself, this is it. Embrace flexibility and full use of all tools of communication and education with the goal of embracing the world of your children and their friends of all hearing levels.
Don’t waste so much energy being defensive. Just accept all aspects of your children and their future worlds wholeheartedly.
Do not invest energy in unproven and foolish concepts such as “neural pathways” since that comes from the same sort of thinking as “if the child learns to sign, he will not learn to speak”. Too much is at stake.
Please see my video response… i welcome anyone who is willing to translate this for me….
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Amen, Dianerez! I agree with what you just said. I feel that some people are still very set in their ways, that one way is the only way. It hurts children. Some children respond to auditory information - fine. How one or two children respond doesn’t mean that all children respond the same way. That’s not true. And what you just shared about the family division is true. I grew up oral. I speak. I grew up with AVT training — listening and lipreading — more of oral approach, not AVT. I had hearing aids, I heard some words, and lipread. But now, looking back, speaking is a skill — SKILL — but speaking itself does not replace language. Language is much more than just learning how to speak and learning how to hear and to understand the content, understand what’s happening around you in the world. How did I pick it up? Reading. Later, I learned ASL. Once I learned ASL, my world opened up and I felt whole and satisfied. I have all the skills that I can use and now I’m torn when I’m hear and read about people who feel that one way is the only way no matter what. That’s wrong. It is hurtful. It hurt my family. My family doesn’t sign. They didn’t want to. They said “Why should we learn? You understand me, you lipread well, then you’re fine.” Okay, they think that I’m fine. Now what about holidays? I join with the group of family, aunts, uncles, cousins, sisters, and brothers, all talking. I’m always missing out. I’ve learned to accept it, but that kind of feeling makes me feel like less of a person, less important. I know that now many children are going through that. I work in school for the deaf, a day school. Many of the children I see have cochlear implants. They are learning to sign and receiving speech training and they are better. They have the best of both worlds and they’re fine. They’re happy, they have a smile on their faces and they hang out with their friends. What’s wrong with that? I’m glad you provided a good discussion with the mom of the CI kid. People like them - mothers of CI children and there are many out there — need to be informed! Thank you, Dianerez, for a beautiful response.
(Amy — hope this was up to muster!)
Totally agree with that. The attitude of this mom makes me sad for her and her kids. She’s the perfect stereotype as to why Deaf people feel offended by hearing parents of deaf kids.
CI Mom,
I wonder how your children hear and communicate while they are swimming and their CI’s are not on. What happens when they malfunction? Are they deaf again?
Why would anyone be against learning ASL? It doesn’t hinder any other form of communication that a deaf child may have the capabilities to master; in fact, it enhances those abilities.
What are you afraid of? Are you afraid to learn a language that may benefit you and your children and their future children possibly? Why is ASL so distasteful for you to accept?
Your children are amplified, but they are still Deaf. I hope you will soon realize this before they grow up and the damage is done.
Listen to Deaf youth and adults. They are the experts. They have so much insight to offer you. Living it and looking at it from your angle are two different things.
My kids are functionally hearing all day long. They do just fine when they bathe or swim, but since this is a very tiny amount of time to be without hearing, it’s really not something that matters too much. My oldest child with a CI has learned to lipread some during those times. He plans to bathe alone when he’s a teenager.
They are bilaterally implanted. We are not afraid of failures, though we won’t probably enjoy them… but they will not be without hearing because they will always hear on the other side, and they can be easily reimplanted, as research has shown. The inconvenience is worth it, according to several kids I’ve known who have gone through reimplantation. Medical devices don’t last forever, but they can be replaced.
Yes, research does show that our implanted kids do better when they focus on learning to listen rather than learn ASL (which is not to say that we exclude everyday visual input). Now my oldest implanted child hears and speaks on par with his hearing peers (and has for many years). My kids are not big D deaf, they are functionally deaf when their CIs are off– so, mainly just when sleeping.
My question to you is– why is it distasteful to you that our kids are hearing all day, using speech and so on? The Deaf are not the experts in hearing, nor are they the experts in the technology which enables kids to learn to listen. We look at it from the hearing angle, and our kids do, too. I do not consult with the deaf for several reasons, the first of which is that they do not seem to even want my kids to be able to hear!
This is a new generation, an entirely new day. We’ve seen it, it’s real, and it’s here now– the deaf can hear. Deaf children can successfully be allowed to be functionally hearing.
Back to the topic of the senses. AVT does not try to place the listening skills in a vacuum; it tries to allow them to develop like a typically hearing brain. It’s more about the brain than the ears, in many ways. The CI provides the way in, but without the appropriate pathways, the development will never occur. I’ve sat through countless sessions. I rarely see a hand covering the mouth, since we sit beside the kids and not face to face. Kids naturally look at the toys and manipulatives. The “hand cue” is something else, where one uses a toy and makes a sound, then offers the toy to the child– almost like a microphone– for them to take their turn making the sound. That is not so much covering the mouth as it is allowing turntaking.
Back to the 5 senses– no, you can’t turn any of them, off at will. While watching TV, if one smells a pumpkin pie baking, one’s taste buds will also get into the game. You can’t turn off your eyes while listening without shutting them. But research has proven time and time again that the brain of a person who has undergone deprivation of one sense via a disability or disease will not develop the same pathways as those who have all 5 senses. So when one re-establishes a sense– as in cochlear implantation– it is crucial to work on that pathway and avoid allowing the continuation of the incorrect development.
It’s perfectly fine for those who are older and did not have the benefit of the CI to utilize their 4 senses to the highest level. But to force their own issues on kids– to disallow them to benefit fully from learning to listen– well that’s just sad. Obviously kids learn in different ways, but humans who can use all 5 senses. Their brain pathways are very similar.
No, I have not heard of “deafism” and I see the word “audism” used daily in deaf blogs. I see the hearing who love their kids and want to provide hearing for them smeared on an almost daily basis. No one is criticizing deaf adults who have made choices and continue to make them according to their wants, needs and philosophies. So leave the parents alone who have decided to offer the best of all the senses to their kids, now that they can.
For those that think this somehow correlates to their oral upbringing… think again. This is not your mother talking. This is not lipreading. This is not forcing our kids to talk. We have seen the future and it is now.
To “hearing mom”– are you insinuating that I’m damaging my kids? Par for the course on these kinds of blogs. Just another example of people who don’t understand our viewpoint. My kids are not “amplified.” Hearing aids provide amplification; cochlear implants provide the electrical stimulation which is far, far different from amplifying sound. I guess you’d have to see the difference between my moderately hearing impaired father who wears hearing aids (age related loss) and my “deaf” kids– he misses a whole lot of family discussion, but they don’t miss a beat. We all look forward to the day that he qualifies for a CI, as does he– because then he’ll be able to hear again.
I’m not afraid of what we’ve done; I’m not being defensive. I’m just stating the facts. For the early identified deaf child, the cochlear implant can allow them to develop as they would have without the hearing impairment. Regardless of other disabilities. No, it doesn’t cure any other disabilities, but it certainly allows a better playing field. Dianrez, there is far too much at stake for us to risk using a language foreign to our kids and our entire family. Fortunately, for our family, this is an issue that’s in the past, since we have seen arrival at English fluency and are long past that. But each and every time we counsel parents new to this issue, we stress how wasteful of our time it would have been to try to learn a foreign language that we DID NOT KNOW at the same time as trying to teach our child how to listen and speak another one. Our kids learned our language, in all of the complexity that a kid deserves. When these parents meet our kids, they know they want the same outcome.
It isn’t distasteful that your children are successful with the CI. By your comments, it’s clear to me that you think that those who do not have hearing are not as smart as your children, or as functional as your children. Your children are whole, and those who do not have any hearing are not. That… Is very distasteful to me.
And your comment about not reading the term deafism is quite revealing to me. You haven’t come across the term before, therefore it doesn’t exist. I’ve come across it many times, especially during the blogs about the Gallaudet Protest of 2006.
That is the message you’re sending here. Your reality is the only reality out there. It doesn’t matter what *any* deaf person thinks, unless they happen to agree with you, apparently.
I don’t see the point of continuing this discussion. You merely came here to tell us that we were wrong, period, and no matter what we say to you, doesn’t matter because above all, we are deaf, and we do not know what we’re talking about.
“It’s not something that really matters too much.” Such a typical response from a hearing person.
We, as deaf people, have every right to hear or know every single word that is said in any type of environment. Hearing or knowing what is going on HELPS to build our language. This is not just for any deaf/hoh person. This applies to hearing people as well.
I lip read very well yet it helps when I don’t have to spend extra time figuring out if a word is “pat, bat, or mat”. Using an extra 3-5 seconds to figure out what that word is causes me to miss the next 2 or 3 words spoken by whoever is speaking.
mother of CI kids (#91659) writes:
mother of CI kids
It is clear that your children have a habit of wearing CI on to have been hearing the sound environment inside or outside. My hard of hearing sister was in the same situation as your kids with CI. They can’t live without CI or a hearing aid.
Looking in the past our childhood, lucky, she went swimming almost everyday without using hearing aid as well as without feeling worried, and she managed to know how to use her common sense in communication through ASL with me and our hearing sisters and brother. She almost never took the responsibility to carefully pay attention to lipreading. It seemed to me that it wasn’t necessary for her to read lipreading.
Amy, it is true that my sister spent much time reading the books.
Wow, I see my mother in you in many ways. Although you and my mother come from different generations (in terms of deafness and technology), I can see that you both work(ed) so hard for your children and for myself. I ultimately found my place in the world and your children will. To give you a little background about myself - I am profoundly deaf. I can lip-read and speak very well. I am also fluent in ASL. Even though my mom shielded me from learning sign for a long time; she realized that she could at least have opened my world earlier because from the person she has taught me to become, I’ve made good choices along the road and I’ve made some bad choices as well. I can swing back and forth with both of the worlds. Not many people have that opportunity.
Although I do not have much experience with people with CIs, I sense a strong parallelism of your children’s lives with my life. If I may, I would recommend that your children continue to connect with other CI users, because no matter how functional they are already, whether they realize it or not, it’s a lonely world out there. I didn’t meet a deaf person until my high school years and met other deaf people like me (mainstreamed, oral background, etc.). It was like a sigh of relief. I realized that I wasn’t alone in the big world. Yet, I maintained my life just dandy as a deaf adult.
To make a point about language, I’m not sure if I understand your reasons for your children not learning ASL; would it be the same if it was Spanish instead? I know it’s not the best example, but I don’t think it’s too much of a risk to learn a foreign language. I’ve learned Italian and Latin and not only had it helped me to communicate with my relatives when I lived in Italy, but it helped me educationally. Think of it as a fun educational learning experience. It does not mean you have to maintain that as a language to communicate; that’s fine your children speak and hear well. I continue to speak and lip-read whenever I visit my family. However, my family does wish we had learned the language earlier because it had opened so many doors for me and it would have done the same for my family. My brother learned Spanish and the doors opened for him in ways he didn’t know before. My family realized the importance of learning different languages was also the key of our successful experiences in life.
Like me, your children are already learning the values that you’ve instilled in them about life in general. With my mother’s support, I’ve gone further than she ever realized. While I acknowledge that this is the new-deaf generation for which I applaud any CI users being successful; I still strongly encourage any CI users to stay connected with each other (and maintain their lives just as they’ve been) because they are still different from others. (Believe me, I’m not to say that being different is such a bad thing – it’s commonly known that people, especially teenagers, do not like to be different at times.)
This above comment is for “mother of CI kids”.
I know this article is more about AG Bell/AVT, but I really felt the need to make a comment about deaf culture and where I stand.
As a CI user since I was 8, I relate to Ann. I was immersed in the hearing world and able to communicate very well with hearing peers as well as answer/talk on the phone. Until I was old enough, my parents NEVER made decisions without discussing it with me. At 8, I was too young to really understand the entire outcome of being implanted with the Nucleus 22, not to mention I was one of the first 500 implanted. My parents made themselves very clear to me because they saw the implant as another tool to add to my tool box. If I didn’t like it, I had the option of not wearing the CI.
There were many days when I felt lonely and empty at heart which I never was able to point out until I met more deaf people in my college years. I went through an identity struggle because all of a sudden, I entered a world with other CI users and people who UNDERSTAND (not THINK they understand) what it is like to be deaf. I was able to connect with these peers on a level I had never been able to with my hearing family and friends back in elementary/high school.
Experiencing deaf culture allowed me to accept myself as a person who carried pride in being deaf. Growing up in an all hearing world, I tried not to label myself as a deaf person. My college years was when I entered my rebellious stage. I chose not to wear the implant for almost 7 years. I was able to grow into a much stronger person and I never felt like I had to wear the implant to please anyone else. I was still loved by people when I chose not to wear the implant. When I entered the real world again, I made the decision to be reactivated with the BTE. I’m glad I made that decision. All the experiences I have been through have molded me into who I am today and I don’t regret anything.
I bet you, if I allowed my parents to drive me to more deaf socials growing up, I would have better self esteem these days and know where I fit in the deaf/hearing world. I sway back and forth between both worlds easily.
My strongest advice is to connect your children/teenagers with other CI/ASL/CS users then leave it up to the person to decide on what they want to do from that point on. Some may choose not to continue connecting with these people which is completely fine, some may be forever grateful. When the person is old enough to understand, try to communicate and see if there is anything you can do without feeling biased. I grew up feeling a lot of pressure to do well with my implant which made me feel as if there was nothing for me to do besides work on being the most maginificent deaf person who did so well with her implant.
Your comment justifies my belief in allowing the parents to make the ultimate decision for the child, as opposed to waiting until the child is 16 to make a personal decision. You were able to say, “Hey, I don’t think I want to do this…so I’m going to turn off my processor for a while and see how that goes.” As a result, you didn’t lose the first 18 years of language and brain plasticity. If it were the reverse, it would be significantly more difficult for a young adult to take in the auditory stimulation.
Exactly. I also would strongly recommend to the mother of the CI kids to keep her CI kids in contact with other CI kids like themselves. Even though I’ve had a CI since I was seven (I’m 25 now), my closest friends are those who went to oral deaf school with me and many of those friends have CIs. They know what it’s like to have a CI, they get my inside jokes about CIs, and I don’t feel as alone because they understand how it is to navigate in the outside hearing world with a CI.
I have hearing friends, but they still don’t get it in some cases, so it’s nice going to my CI oral friends and talking to them about what it’s like having one.
Full disclosure here: I speak orally, and don’t know ASL.
I strongly identify with the comments made by Ann and Proud CI user above. I’ve been a CI user since I was 10 years old. I lost my BTE six months ago, and, boy, have I regressed. I didn’t realize how heavily I relied upon my CI while lipreading until I didn’t have it anymore. I also don’t use my voice much these days since I don’t speak as clearly now that I can’t hear myself.
Yes, I do plan to get another processor - but am battling my insurance company to get my internal processor upgraded. They would pay for me to go bilateral (which I do not want), but they won’t cover a re-implantation unless the internal device has failed. So - until I win - I am deaf.
I eagerly anticipate my re-implantation so I don’t have to write notes anymore, but I’ve learned I can function just fine without it.
To Mom of CI kids: I am the youngest in a blended family of six children, four of whom are deaf. All our parents are hearing. We were all raised in the oral method, and we all chose to learn sign in our teens. We are comfortable swaying between both worlds because our parents gave us the opportunity to do so.
Mother of CI children,
1) You have yet arrive to the stage where your kids are teenagers. When they do, they WILL tell you that they are treated a tad, a bit, quite some or a lot differently. Brace for that. Prepare for at least some social ineptitude and some “policing” to ensure that your children are treated as equal. Knowing how you have devoted your time to your children, use this understanding to preparatively “fill in” what your kids will come to lack significantly. Love and devotion may very well be your salvation.
2) CI individuals, no matter how well they replicate the nuances and mannerisms of the Hearing, will never be -fully- accepted. They will carry the weight of their manufactured identity, as well as equating to it, always to and with the device in their head. They will continue, and come to feel the need, to explain that they are different. If not outwardly, inwardly they do.
3) Your notions about neural pathways are at best erroneous. You portray only the one-sided knowledge of what doctors told you: neural pathways, as from the discipline of neuroscience, is a typical notion of the connectionist model–which states implicitly and explicitly that should a neural pathway appears unpaved, the brain -always- renegotiates, readjusts, or reroutes. Your equation in which a neural pathway that is “absent” is therefore “lost” and irrevocably “damaged”; this observation is very common, misadvised and misguided. Hard for you to swallow, but that is perfectly all right. It takes time to digest that what may seem as “facts” are derived from a particular theoretical paradigm, and are not necessarily holistic in all ventures of how facts could come to mean. Your assumptions about the Deaf community remain at best an outsider; your facts are altogether askew if only one-sided.
4) On another completely but very relevant level, you unfortunately inherit and share a common trait in America: polylinguaphobia; the fear of multilingualism. Knowledge of multiple languages is advantageous, intellectually provoking and stimulating. This is especially crucial in the critical period. These neural pathways are obviously what you lack (and very poor L2 acquisition at best), so too will your kids. CI kids, in becoming adults, are rarely, if any at all, bilingual or at least multilingual. Their neural pathways are and have been “damaged”. By your rationale, this would be so, yes?
In today’s society, multilingualism is a very desired skill, as it concerts to multiculturalism very well, and it is also a desirable quality in employment of the present and future “work” worlds. You need only to look at a job classifieds and observe the growing demand for Spanish.
5) Yes, I know and am fluent in 5 languages; fluent in three languages as early as 10 years old. Mother of CI kids, find me one that can and is–but don’t bother though, none exists. They are, let’s say, tongue-tied.
-Sephar Malevolas
Sephar,
I truly do not know what to say of your comments except to say that I suspect that you are not a pleasant person to know.
The mother who made the decision to have her children grow up with a C.I. appears to have done her research, judging from her own observations and analysis. It is evident that she feels that she has made the right choice. The same would most likely be true for any other parents who feel that American Sign Language or Cued English or any other forms of communication is the correct choice for their children.
More importantly: she loves her children very much and she is focused on securing a bright future for them. I can see close parallels between her focus and what my parents have done for me and I would venture to say that so can many of the DeafDc.Com members here.
So if you are interested in continuing to engage in your own form of intellectual masturbation with your underlying message to “Mother with CI children” that she is an unfit mother and a racist, then please continue. However, I do not think you have impressed anyone. Certainly, you do not impress me.
Scott
Whoa… how did we get off the tangent from the original topic? We are starting to nitpick Mother of CI Children’s comments. It is obvious that Mother of CI children initially defended AG Bell’s AVT approach and felt that Ms. Rhoades was been misunderstood by the writer.
The article is all about how a few people in AG Bell organization are starting to think otherwise, and still the party hard-liners are scoffing at them, and kept harping their beliefs that AVT is the sure way to go…
AVT is an approach to teach spoken language (through listening and talking) and it is not a natural language acquisition for visually orientated Deaf children.
Deaf babies at their first few months before implantation, use their visual ‘pathways’ to navigate their world. It does not make any sense that their visual ‘pathways’ are not reinforced, but a blatant disregard because it is necessary to work on their artificial sense, their hearing with cochlear implant(s).
What is wrong by having a dual-sensory exposure for language acquisition? Are there any research out there that a dual-sensory exposure (visual and auditory) for learning a language show much success, a rapid development of language and comes with benefits? I bet there is data out there but it was suppressed for possible political and financial reasons.
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Scott,
I would certainly not want to meet someone with a malleable backbone like you. It is indeed unfortunate you took it personally and instead mobilized your voice with the nonexistent force of “others” in the spirit of some imagined similitude (and in doing so, hopefully incite others to clamor in). One can observe and venture to say you are very threatened by radicalism; and rightfully so. For you to allow and take at face value a perspective in one end of the spectrum of language acquisition, and the social/societal implications associated with it, and critique another end–shows how transparent you are in your reasoning. Your view is not meditative; it is negotiated.
She has not done her research. If she did, it was one-sided, and it was conducted with and from a phonocentric approach. For you to suggest otherwise is myopic. If it is perceived as unfortunate to be taught ASL at childbirth from the perspective of a phonocentrist, for you to negate the alternative hardnosed perspective from a visuo-spatialist only shows how your intellectual stance is compromised. It is also entertaining in a strange way (to mock at and use your colorful euphemism of intellectual masturbation) to observe how you translate this phonocentrism to audism. For if from fanaticism to barbarism is but only a step, perhaps you are not so far off.
Anything else you wish to imply or interpret about my comment is irrelevant.
-Sephar
Wow, now I am impressed!
Enough, you obviously one-upped Scott. Enough. Stop, please. This is about the article and I must applaud Aaron’s article. I actually find his writing to be very good and the article is thought-provoking. It does suggest that maybe AGB would be open to researches about Cued speech (or ASL) in the future. As for other comments, especially Amy’s, they have the right idea. At least, it feels that way to me.
Looking forward to more articles like this. :)
This isn’t directed at anyone in particular.
I would like to make some comments in relation to a quote made by “Proud CI User”, who said “My parents made themselves very clear to me because they saw the implant as another tool to add to my tool box. If I didn’t like it, I had the option of not wearing the CI.”
I would like to say that this isn’t the first time I’ve heard someone say something like this.
I find such comment very disturbing, because it reflects a VERY casual attitude toward CI.
CI shouldn’t be taken *that* casually, because ultimately, we are talking about drilling a hole in a child’s head and permanently breaking the membrane that protects the brain itself.
In other words, once that membrane is broken, and once you have a hole in your head, your brain is forever vulnerable to infections (such as mengitis, for example).
Therefore, to be so casual and say something like “oh, hey, I can always quit using CI” overlooks the BASIC FACT that the results of a CI surgery is *not* reversible: in other words, you don’t get to say, ‘I don’t want this CI anymore’ and then get that membrane back whole, and your skull back to its original hole-free condition it was pre-CI.
So, please, if anyone is thinking about CI and thinking in terms of its being reversible, STOP. It isn’t the same as dyeing your hair or getting glasses or painting your toenails. Any of these are reversible, except for CI.
Your hysteria about this is quite unfounded.
Talk about blowing things out of proportions… the risk of meningitis is relatively small.
I know “Proud CI User” and that person certainly didn’t make the decision to stop wearing the CI lightly.
FYI: I went through a second surgery to upgrade the old Nucleus 22 with the Nucleus 24. The audiologists and surgeons certainly didn’t take this process casually. Friends I know that have worn hearing aids all their life thought long and hard before deciding to go under the knife. They were quite aware of the consequences.
I think you should give people more credit than that. The process is made so that parents and deaf adults don’t make decisions “casually” in terms of CI surgery.
I don’t think I’m blowing this out of proportion…I’m speaking from many years’ worth of listening people make light of CIs (I’m not talking about doctors or audiologists…I’m talking about parents AND CI users themselves).
I’m not talking about “making light of the decision to stop using CI”. I am specifically talking about the BEGINNING, where the parent/user first start thinking about getting implanted. I feel that, during their thinking and decision-making process, if they have this mind-set that one can just “quit” using CIs, then they are not really fully understanding the permanence of implants in one’s ear(s) and its effects on the body. (I know, because my husband is an ex-CI user, and he has given me full details on the effects the CI has had on his body. It isn’t pretty.)
And Noelle, I’m not being hysterical…FDA has been covering this for a number of years now: http://www.fda.gov/cdrh/medica.....hlear.html
Yes, I have a big scar on the back of my head that’s hardly noticeable when my hair’s long enough. My second scar from surgery this past Christmas isn’t even noticeable as it’s right behind my ear.
As to your “point” that meningitis is a real risk. Please READ the notice much more closely. It has stated that TWO children died from meningitis. Neither of those children were fully vaccinated for meningitis (I’ve received all my vaccinations so I have no fear, even though back in college I was present at a party where there was an outbreak of bacterial meningitis a few years back).
Another point that this “advice” makes is that those children received the Advanced Bionics cochlear implant with a positioner component (a small rubber wedge used for placement by the surgeon).
That device is no longer implanted as of July 2002.
Within that statement, the CDC/FDC study concluded that .6% of children in the study developed meningitis. Such a small number compared to the high number of infections occurring in pacemaker recipients (5.3% in 2003 - http://www.theheart.org/article/705841.do or google pacemaker + infection rate)
Please get your facts straight before making claims that otherwise have the potential to be blown out of proportion.
The problem is in priorities.
I don’t give a sh*t about scars.
What I care about is having a hole in one’s own skull, and the fact that your brain is protected from infections by a membrane.
You can dance around this all you want, but it is a FACT that once you have a hole in your head and once that membrane is broken, you are permanently vulnerable.
I, as a Deaf person, would NEVER subject my head and my brain to such unnecessary risk.
I also am a mother of a Deaf son, and I would never subject his head and his brain to this same risk.
It’s not worth it.
And those two deaths? Not the first ones. Just the two most recent ones. There have been other deaths in past years that have happened to both children and adults.
And I’m not exaggerating.
*shakes head*
There is no such thing as a hole in one’s head. Many people are led to believe that cochlear implant is a very sensitive and major surgery since it involves operating on the brain. There is also the fear that the internal component can go bad and “damage the brain” that it sits upon. All this is nonsense. The cochlear implant doesn’t go near the brain at all. The internal electrode array gets inserted into the inner ear canal or cochlea, and the receiver is placed right under the skin of the skull. The brain is not touched by any component of the cochlear implant, nor is it exposed at all during surgery.
It’s sort of silly, this paranoia about CIs.