Published on August 5, 2007 in Deaf World As Eye See It blog.
This is an unique blog posting that I want to share with you, especially for audiologists who are working with D/deaf children. This is an e-mail correspondence between Deaf vlogger and hearing audiologist. We both agreed that we share our correspondence with you.
Let me explain how it had happened, it all began when one audiologist contacted me through e-mail regarding “The Greatest Irony”.
This audiologist (name not revealed as per request) explained in this e-mail about how important this videoclip should be shared with audiologists.
I asked, “Why?”
This audiologist responded, “Because this video provides an unique perspective from the Deaf person that many audiologists did not get from their professional training.”
Then, I asked several difficult questions, and with my delight, these questions were answered!
Thank you so much, my fellow audiologist, for your time and contribution.
AUDIOLOGIST:
Amy, you raised some excellent questions in your last email. I will copy parts of your message and try to share my thoughts. I am honored that you care what I think, and again, I am sorry for taking so long to respond.
AMY COHEN EFRON:
When babies are diagnosed with hearing loss, are they fitted with hearing aids right-away or will the family and surgeon plan to schedule the cochlear implant surgery 6 months later?
AUDIOLOGIST:
It varies among clinics in the U.S. With newborn hearing screening, the goal is to identify the hearing loss by 1 month of age, and intervene (with hearing aids, parent support, or ASL when appropriate) by 3 months of age. Since the FDA guidelines say a CI should be implanted at age 1 year earliest, that leaves plenty of time to let the early-identified baby try hearing aids and see if there is benefit or not. It used to be that most clinics would require the baby to try using hearing aids before scheduling surgery. I think these days there is more variability among clinics and regions.
I think the clinics definitely have a bias toward recommending CIs if the child is profoundly or even severe-to-profoundly deaf. They usually don’t provide full information about choices in language, they don’t link families to Deaf adults, and ... I think they don’t even realize their bias.
One more thing: the FDA guidelines are only guidelines, not laws. There are some clinics that implant earlier than a year.
AMY COHEN EFRON:
What happens between the time the hearing loss is identified and the time the CI is implanted?
No auditory stimulation - and do you think exposing *some* signs will help or impede the child’s auditory learning?
AUDIOLOGIST:
My own opinion is: all deaf and significantly hearing impaired babies - and their families- should have exposure and access to ASL-based signs (even if it’s sign supported speech used in a conceptually accurate manner). I absolutely believe we should be making the most of their strength: vision.
Unfortunately, this is not a popular view in the clinics.
As far as the auditory component, yes, that should be addressed (if the parents’ goal is to maximize the use of any residual hearing and help prepare the brain for interpreting whatever sound signals it will receive). Research shows that early intervention is critical. Even before the baby gets the CI, there is a lot the parents can do to facilitate communication with the baby by the way they use their tone of voice, and the duration, pitch, loudness, musicality of the voice.
It’s not just words and speech sounds… But again, I agree completely that parents of deaf babies need support to understand and adapt to the visual requirements of the situation.
AMY COHEN EFRON:
I am still struggling to understand why AVT shuns sign language completely, and what kind of harm it will be if visual cues/signs are introduced during the AVT sessions?
AUDIOLOGIST:
Did you know that AVT is now under AGBell? AVT is not an independent organization of its own anymore.
Anyway, the reason AVT shuns ALL visual communication of all kinds (including ASL, Cued Speech, and even speechreading/lipreading): they believe that using the visual path recruits brain cells that would otherwise be used for processing auditory information.
I’ve heard it compared to putting an “eyepatch over the strong eye [vision] in order to strengthen the weak eye [hearing]”.
AMY COHEN EFRON:
The infant from age zero to 6 months or later - their brains are wired for visual input - and why take the best advantage of this?
AUDIOLOGIST:
I completely agree with you. The greatest irony indeed.
We need to make connections with professionals, especially audiologists, speech language pathologists, teachers, and ENTs to help them to see the irony of the situation. I did with one audiologist, and I believe you can too.
The Greatest Irony - N.A.D.’s Response
Published on August 8, 2007 in Deaf World As Eye See It blog.
This is my greatest delight to post the National Association of the Deaf’s (NAD) response to “The Greatest Irony” videoclip.
Several days ago, I e-mailed Bobbie Beth Scoggins, President of NAD and Nancy Bloch, Executive Director of NAD inviting them to view this videoclip, The Greatest Irony along with Parent’s and Audiologist’s responses. They responded back promptly with their statement to share with all of you, the viewers and the Deaf community.
The National Association of the Deaf was established in 1880 in Cincinnati, Ohio. The NAD has a long history of defending the rights of deaf and hard of hearing people. Throughout the history of the NAD, new challenges always rise and breakthroughs and achievements have created a better life for deaf and hard of hearing people.
The mission of the National Association of the Deaf is to promote, protect, and preserve the rights and quality of life of deaf and hard of hearing individuals in the United States of America.
We appreciate your thoughtful comments about making sure that deaf babies have opportunities to learn American Sign Language – a fully accessible language – right from the start. Taking this one step further, all of us in the deaf community need to support families of deaf and hard of hearing children in any way we can. We need to form alliances with families, become mentors, and help them learn to sign. We need to let them know it is okay to be deaf.
We need to be involved in our state early hearing detection and intervention (EHDI) programs. Each state has an EHDI advisory panel. We need to be at that table – in every state.
We also need to reach out to audiologists and other medical professionals so they can see our real life successes.
Let’s take the energy generated by The Greatest Irony and translate that into better support for deaf and hard of hearing babies and their families.
Bobbie Beth and Nancy
The Greatest Irony - Parent’s Response
Published on July 31, 2007 in Deaf World As Eye See It blog.
This is a very special blog posting that I want to share with you, especially for parents of d/Deaf children. This is an e-mail correspondence between Deaf vlogger and hearing parent of Deaf toddler. We both agreed that we share our correspondence with you.
Please allow me to introduce Jeannette of Moot Thoughts & Musings and she is my special guest blogger today.
I have been following Jeannette’s blog for several weeks, and I left one or two comments on her blog supporting about her son, Ellis.
Then, on July 27, 2007, I was surprised that Jeannette wrote a very touching blog entry mentioning about my videoclip, The Greatest Ironyand I had to respond by leaving my comment on her blog. Then, immediately Jeannette contacted me directly.
Amy and I have shared correspondence recently that left us both (or at least me!) very encouraged and thought we’d share it. But I thought I’d give a little background first.
It’s no secret.
This past month has been an emotional roller coaster for us.
On July 2 our two year old, Ellis, received a cochlear implant in his right ear. These past two years have been an incredible journey as we had our first child and found out shortly thereafter that he is deaf, thanks to the newborn hearing screen. His deafness was a surprise, as there is no family history of hearing loss nor an illness to warrant such, but from the beginning, my husband and I have been pretty positive about it.
He was healthy and happy. Deaf was different from what we expected, and something we would have to learn a lot about, but it wasn’t something to be sad or devastated about. We set about learning ASL, receiving early intervention services, and learning all we could about Deaf culture and what it means to be Deaf in society. In short, we fell in love with it all. The more we learn the more we love. We love signing, we love our Deaf friends.
But when faced with decisions to make about our son’s education, we looked hard at the options. His audiologist confirmed almost immediately that audiologically he was a candidate for a cochlear implant.
We didn’t know much about Deaf culture at the time, but we knew enough to know that he didn’t have to have one to be a happy, well-functioning, independent deaf adult. We studied a lot about different educational options and were thrilled to discover there is a rising emphasis on bilingual/bicultural education. Getting the implant would allow learning some things to become easier, yet we could still cultivate ASL and giving him the tools to be part of the larger Deaf community, as well. The best of both. So we decided to go ahead with the implant when he turned 2.
His getting the implant has lead to a surf of crazy emotions for me. Yea, we have a few Deaf friends who know us and understand us. But, what if in the name of providing a community for my son, we showed up at a local deaf event with an implanted child? Would this culture that we love reject us? our family? my son? And worst of all, what if my son eventually picked up on my anxieties and felt them himself, rather than the unhindered social happiness he has now? I just don’t have a sense for the larger picture of having an implanted kid means in the great Deaf community.
I’ve been hiding some of these emotions as I’ve blogging about Ellis’s journey, unsure of how to process them. But I’ve been encouraged.
When I wrote this entry reflecting on the recent AGBell conference and protest, Amy left a comment that I had to respond to. She said:
“My heart is full that you wrote this entry on your blog that you understood “The Greatest Irony” - and you were able to explain to your readers so well that it makes me so happy. What even makes me happier is that you are a parent of Deaf child who learns ASL since birth, and receives cochlear implant and learning to listen and talk and still using ASL...You have shown your love for your son, unconditionally, and accept him as being Deaf, and Ellis is so fortunate to learn two languages that will enrich his learning for the rest of his life!”
Wow! What encouraging words. It motivated me to speak more candidly:
“I have to write back to you. Your comments have been so touching to me. I’ve enjoyed the various blogs on Deaf Read and really respect so many people, yourself included. I have no idea how mine ended up there, but it’s so fun and so meaningful to have that connection with so many wonderful people. I don’t feel worthy.
Two weeks ago I was in tears. We have been struggling over the CI decision for a long time, and decided to go ahead and do it after we saw specific and intentional educational strategies for bilingual deaf ed, especially coming out of Gallaudet. So we did it. I want to him to learn how to talk, and there’s no way I was going to torture him trying to listen with the minimal amount of access he was getting with the aids. I know it’s controversial, and I know and respect the variety of opinions in the Deaf community. But I just cried and cried wondering if people would reject our family now. I can’t give him E everything he needs as a deaf kid. I’m hearing, our whole world was a hearing world until E arrived, and even though we work as hard as we can, it’ll never be good enough. We NEED Deaf people. It’s been so emotional. We don’t know very many Deaf people, but we have a few friends. It’s hard to get a sense for the larger picture.
So I know it sounds kind of dumb, but--thanks for being nice to me!! Know that I was cheering for you guys this weekend. And thanks for encouragement to me on my blog. It has made such a HUGE difference. I can’t even begin to tell what this means to me. Sometimes I feel so alone.”
And while she was replying with a few more kind words, I felt like I HAD to say what I had said to the best of my meager ability in American Sign Language.
I’m not very good yet. But I stutter along.
We talked more about signing and how it is so often the case that parents don’t sign well. I see it at Ellis’s school. We’re some of the best signers, but the sad reality is we’re not that great.
So if we sign well compared to other parents, and we are such beginners? You do the logic. I know that there are parents out there who sign well; I hope someday to join their ranks. But it is true that even more do not. It is something I ponder a lot, and I think ultimately it comes down to a fear of language. I’ve had to study other languages a lot for my work as a scholar, so throwing ASL in there was not a big deal to me. But learning a new language involves risk. It forces one to think from a whole new linguistic perspective. It puts the learner in centerstage for making mistakes (because mistakes WILL be made). Even more, learning a new language forces one to look at one’s own native language with a scrutiny probably never used before. Ultimately, I think it is fear of language, of one’s own and of the “other” that keeps parents from signing.
But we also talked about how often it is that parents are misled by professionals. How does one undo such a package of damage? Parents want the best for their children. The myth of oralism is such a deeply embedded problem.
You’re right, Amy, it IS a great irony.
Amy Cohen Efron:
This is what we need to do --- we need to reach out parents out there, and chances are that they will respond with open mindedness, warmth, support and understanding.
That is priceless, because it takes a community to raise a Deaf child.
The Greatest Irony - Audiologist’s Response
Published on August 5, 2007 in Deaf World As Eye See It blog.
This is an unique blog posting that I want to share with you, especially for audiologists who are working with D/deaf children. This is an e-mail correspondence between Deaf vlogger and hearing audiologist. We both agreed that we share our correspondence with you.
Let me explain how it had happened, it all began when one audiologist contacted me through e-mail regarding “The Greatest Irony”.
This audiologist (name not revealed as per request) explained in this e-mail about how important this videoclip should be shared with audiologists.
I asked, “Why?”
This audiologist responded, “Because this video provides an unique perspective from the Deaf person that many audiologists did not get from their professional training.”
Then, I asked several difficult questions, and with my delight, these questions were answered!
Thank you so much, my fellow audiologist, for your time and contribution.
AUDIOLOGIST:
Amy, you raised some excellent questions in your last email. I will copy parts of your message and try to share my thoughts. I am honored that you care what I think, and again, I am sorry for taking so long to respond.
AMY COHEN EFRON:
When babies are diagnosed with hearing loss, are they fitted with hearing aids right-away or will the family and surgeon plan to schedule the cochlear implant surgery 6 months later?
AUDIOLOGIST:
It varies among clinics in the U.S. With newborn hearing screening, the goal is to identify the hearing loss by 1 month of age, and intervene (with hearing aids, parent support, or ASL when appropriate) by 3 months of age. Since the FDA guidelines say a CI should be implanted at age 1 year earliest, that leaves plenty of time to let the early-identified baby try hearing aids and see if there is benefit or not. It used to be that most clinics would require the baby to try using hearing aids before scheduling surgery. I think these days there is more variability among clinics and regions.
I think the clinics definitely have a bias toward recommending CIs if the child is profoundly or even severe-to-profoundly deaf. They usually don’t provide full information about choices in language, they don’t link families to Deaf adults, and ... I think they don’t even realize their bias.
One more thing: the FDA guidelines are only guidelines, not laws. There are some clinics that implant earlier than a year.
AMY COHEN EFRON:
What happens between the time the hearing loss is identified and the time the CI is implanted?
No auditory stimulation - and do you think exposing *some* signs will help or impede the child’s auditory learning?
AUDIOLOGIST:
My own opinion is: all deaf and significantly hearing impaired babies - and their families- should have exposure and access to ASL-based signs (even if it’s sign supported speech used in a conceptually accurate manner). I absolutely believe we should be making the most of their strength: vision.
Unfortunately, this is not a popular view in the clinics.
As far as the auditory component, yes, that should be addressed (if the parents’ goal is to maximize the use of any residual hearing and help prepare the brain for interpreting whatever sound signals it will receive). Research shows that early intervention is critical. Even before the baby gets the CI, there is a lot the parents can do to facilitate communication with the baby by the way they use their tone of voice, and the duration, pitch, loudness, musicality of the voice.
It’s not just words and speech sounds… But again, I agree completely that parents of deaf babies need support to understand and adapt to the visual requirements of the situation.
AMY COHEN EFRON:
I am still struggling to understand why AVT shuns sign language completely, and what kind of harm it will be if visual cues/signs are introduced during the AVT sessions?
AUDIOLOGIST:
Did you know that AVT is now under AGBell? AVT is not an independent organization of its own anymore.
Anyway, the reason AVT shuns ALL visual communication of all kinds (including ASL, Cued Speech, and even speechreading/lipreading): they believe that using the visual path recruits brain cells that would otherwise be used for processing auditory information.
I’ve heard it compared to putting an “eyepatch over the strong eye [vision] in order to strengthen the weak eye [hearing]”.
AMY COHEN EFRON:
The infant from age zero to 6 months or later - their brains are wired for visual input - and why take the best advantage of this?
AUDIOLOGIST:
I completely agree with you. The greatest irony indeed.
We need to make connections with professionals, especially audiologists, speech language pathologists, teachers, and ENTs to help them to see the irony of the situation. I did with one audiologist, and I believe you can too.
The Greatest Irony - N.A.D.’s Response
Published on August 8, 2007 in Deaf World As Eye See It blog.
This is my greatest delight to post the National Association of the Deaf’s (NAD) response to “The Greatest Irony” videoclip.
Several days ago, I e-mailed Bobbie Beth Scoggins, President of NAD and Nancy Bloch, Executive Director of NAD inviting them to view this videoclip, The Greatest Irony along with Parent’s and Audiologist’s responses. They responded back promptly with their statement to share with all of you, the viewers and the Deaf community.
The National Association of the Deaf was established in 1880 in Cincinnati, Ohio. The NAD has a long history of defending the rights of deaf and hard of hearing people. Throughout the history of the NAD, new challenges always rise and breakthroughs and achievements have created a better life for deaf and hard of hearing people.
The mission of the National Association of the Deaf is to promote, protect, and preserve the rights and quality of life of deaf and hard of hearing individuals in the United States of America.
National Association of the Deaf’s webpage
We appreciate your thoughtful comments about making sure that deaf babies have opportunities to learn American Sign Language – a fully accessible language – right from the start. Taking this one step further, all of us in the deaf community need to support families of deaf and hard of hearing children in any way we can. We need to form alliances with families, become mentors, and help them learn to sign. We need to let them know it is okay to be deaf.
We need to be involved in our state early hearing detection and intervention (EHDI) programs. Each state has an EHDI advisory panel. We need to be at that table – in every state.
We also need to reach out to audiologists and other medical professionals so they can see our real life successes.
Let’s take the energy generated by The Greatest Irony and translate that into better support for deaf and hard of hearing babies and their families.
Bobbie Beth and Nancy
The Greatest Irony - Parent’s Response
Published on July 31, 2007 in Deaf World As Eye See It blog.
This is a very special blog posting that I want to share with you, especially for parents of d/Deaf children. This is an e-mail correspondence between Deaf vlogger and hearing parent of Deaf toddler. We both agreed that we share our correspondence with you.
Please allow me to introduce Jeannette of Moot Thoughts & Musings and she is my special guest blogger today.
I have been following Jeannette’s blog for several weeks, and I left one or two comments on her blog supporting about her son, Ellis.
Then, on July 27, 2007, I was surprised that Jeannette wrote a very touching blog entry mentioning about my videoclip, The Greatest Ironyand I had to respond by leaving my comment on her blog. Then, immediately Jeannette contacted me directly.
First, check this link read Jeannette’s blog entry: Moot Thoughts and Musings - The greatest irony
Jeannette of Moot Thoughts & Musings:
Amy and I have shared correspondence recently that left us both (or at least me!) very encouraged and thought we’d share it. But I thought I’d give a little background first.
It’s no secret.
This past month has been an emotional roller coaster for us.
On July 2 our two year old, Ellis, received a cochlear implant in his right ear. These past two years have been an incredible journey as we had our first child and found out shortly thereafter that he is deaf, thanks to the newborn hearing screen. His deafness was a surprise, as there is no family history of hearing loss nor an illness to warrant such, but from the beginning, my husband and I have been pretty positive about it.
He was healthy and happy. Deaf was different from what we expected, and something we would have to learn a lot about, but it wasn’t something to be sad or devastated about. We set about learning ASL, receiving early intervention services, and learning all we could about Deaf culture and what it means to be Deaf in society. In short, we fell in love with it all. The more we learn the more we love. We love signing, we love our Deaf friends.
But when faced with decisions to make about our son’s education, we looked hard at the options. His audiologist confirmed almost immediately that audiologically he was a candidate for a cochlear implant.
We didn’t know much about Deaf culture at the time, but we knew enough to know that he didn’t have to have one to be a happy, well-functioning, independent deaf adult. We studied a lot about different educational options and were thrilled to discover there is a rising emphasis on bilingual/bicultural education. Getting the implant would allow learning some things to become easier, yet we could still cultivate ASL and giving him the tools to be part of the larger Deaf community, as well. The best of both. So we decided to go ahead with the implant when he turned 2.
His getting the implant has lead to a surf of crazy emotions for me. Yea, we have a few Deaf friends who know us and understand us. But, what if in the name of providing a community for my son, we showed up at a local deaf event with an implanted child? Would this culture that we love reject us? our family? my son? And worst of all, what if my son eventually picked up on my anxieties and felt them himself, rather than the unhindered social happiness he has now? I just don’t have a sense for the larger picture of having an implanted kid means in the great Deaf community.
I’ve been hiding some of these emotions as I’ve blogging about Ellis’s journey, unsure of how to process them. But I’ve been encouraged.
When I wrote this entry reflecting on the recent AGBell conference and protest, Amy left a comment that I had to respond to. She said:
“My heart is full that you wrote this entry on your blog that you understood “The Greatest Irony” - and you were able to explain to your readers so well that it makes me so happy. What even makes me happier is that you are a parent of Deaf child who learns ASL since birth, and receives cochlear implant and learning to listen and talk and still using ASL...You have shown your love for your son, unconditionally, and accept him as being Deaf, and Ellis is so fortunate to learn two languages that will enrich his learning for the rest of his life!”
Wow! What encouraging words. It motivated me to speak more candidly:
“I have to write back to you. Your comments have been so touching to me. I’ve enjoyed the various blogs on Deaf Read and really respect so many people, yourself included. I have no idea how mine ended up there,
but it’s so fun and so meaningful to have that connection with so many wonderful people. I don’t feel worthy.
Two weeks ago I was in tears. We have been struggling over the CI decision for a long time, and decided to go ahead and do it after we saw specific and intentional educational strategies for bilingual deaf ed, especially coming out of Gallaudet. So we did it. I want to him to learn how to talk, and there’s no way I was going to torture him trying to listen with the minimal amount of access he was getting with the aids. I know it’s controversial, and I know and respect the variety of opinions in the Deaf community. But I just cried and cried wondering if people would reject our family now. I can’t give him E everything he needs as a deaf kid. I’m hearing, our whole world was a hearing world until E arrived, and even though we work as hard as we can, it’ll never be good enough. We NEED Deaf people. It’s been so emotional. We don’t know very many Deaf people, but we have a few friends. It’s hard to get a sense for the larger picture.
So I know it sounds kind of dumb, but--thanks for being nice to me!!
Know that I was cheering for you guys this weekend. And thanks for encouragement to me on my blog. It has made such a HUGE difference. I can’t even begin to tell what this means to me. Sometimes I feel so alone.”
And while she was replying with a few more kind words, I felt like I HAD to say what I had said to the best of my meager ability in American Sign Language.
I’m not very good yet. But I stutter along.
We talked more about signing and how it is so often the case that parents don’t sign well. I see it at Ellis’s school. We’re some of the best signers, but the sad reality is we’re not that great.
So if we sign well compared to other parents, and we are such beginners? You do the logic. I know that there are parents out there who sign well; I hope someday to join their ranks. But it is true that even more do not. It is something I ponder a lot, and I think ultimately it comes down to a fear of language. I’ve had to study other languages a lot for my work as a scholar, so throwing ASL in there was not a big deal to me. But learning a new language involves risk. It forces one to think from a whole new linguistic perspective. It puts the learner in centerstage for making mistakes (because mistakes WILL be made). Even more, learning a new language forces one to look at one’s own native language with a scrutiny probably never used before. Ultimately, I think it is fear of language, of one’s own and of the “other” that keeps parents from signing.
But we also talked about how often it is that parents are misled by professionals. How does one undo such a package of damage? Parents want the best for their children. The myth of oralism is such a deeply embedded problem.
You’re right, Amy, it IS a great irony.
Amy Cohen Efron:
This is what we need to do --- we need to reach out parents out there, and chances are that they will respond with open mindedness, warmth, support and understanding.
That is priceless, because it takes a community to raise a Deaf child.