I promised I would give an update of my daughter's booth test when I got it. She was tested last summer, but there was a mix up in getting the report out, so it took a bit longer than expected to get the results, but here they are:
She took the BKB-SIN test, which tests signal to noise ratio compared to "normal" hearing. In this case, it compares how loud the background noise is for a hearing person to get 50% correct answers, and compares it to how loud the background noise needs to be for the person with the hearing loss to get 50% correct. Here is an explaination from a BKB-SIN users manual.
"If a normal-hearing subject requires a +2 dB SNR to obtain 50% correct on a speech-in-noise test, and a hearing-impaired subject requires a +8 dB SNR to obtain 50% correct on the same test, the SNR loss for the hearing impaired subject is 6 dB."
Her SNR for both ears tested together was 3.5 dB. If I understand this test, that means that she needs 3.5 dB higher signal to noise ratio than kids her age with "normal" hearing in order to get the same amount of understanding of the verbal information given.
That just amazes me.
Friday, November 19, 2010
Tuesday, November 2, 2010
Myths
One of my biggest frustrations when doing my research on ALL THINGS DEAF was the vast amount of myths I encountered. If the people and groups giving me information would have just limited themselves to telling me what they did well and why, it would have been fine. But they could not seem to stop themselves from also telling me what "the other side" did poorly. And therein lay the foundation of MYTHS. I have to tell you, those spouting the words "AG BAD" really irritated me. They didn't help their cause at all. Badmouthing differing options cast them in a very poor light. Those who tried to use the 4TH GRADE READING LEVEL to try and promote their agenda got me angry as well. I encountered those who told me that kids with CIs could not take baths because they would have WIRES STICKING OUT OF THEIR HEADS. I was also told that my child would never learn language unless (take your pick) WE LEFT OUT SIGN LANGUAGE AND WENT WITH AVT/WE WENT STRICTLY ASL WITH NO ORAL LANGUAGE.
Give me a break.
The myth I dislike the most is the one where people told me that we should wait to have our daughter implanted because she should have a say in it. We just needed to wait until she got older so she could decide for herself. Any parents who buy into this myth are deluding themselves. The younger the child is at the time of the implant, the easier it is for that child to learn to process the signals into meaningful sound. The older they are, the harder it is. If the parents wait until the child is old enough to decide, chances are good that the child will not be able to make very good progress turning those signals into meaningful sound. The simple act of waiting itself makes the decision. Whether they want to or not, the parent does decide. The only exception is if the child's hearing loss is not profound, and they have good use of hearing aids. In that case, they are not even eligible for implants so the point is moot.
I have encountered myths both from the ASL Deaf Community, and the oral deaf. All these myths produce is anger and disappointment in the families who are new to these issues, trying to raise their baby in this new-to-them world of hearing loss. They lose trust in the people giving them the information, and they are very likely to reject those they find they cannot trust. And that is probably the saddest outcome of all.
What myths did you encounter?
Give me a break.
The myth I dislike the most is the one where people told me that we should wait to have our daughter implanted because she should have a say in it. We just needed to wait until she got older so she could decide for herself. Any parents who buy into this myth are deluding themselves. The younger the child is at the time of the implant, the easier it is for that child to learn to process the signals into meaningful sound. The older they are, the harder it is. If the parents wait until the child is old enough to decide, chances are good that the child will not be able to make very good progress turning those signals into meaningful sound. The simple act of waiting itself makes the decision. Whether they want to or not, the parent does decide. The only exception is if the child's hearing loss is not profound, and they have good use of hearing aids. In that case, they are not even eligible for implants so the point is moot.
I have encountered myths both from the ASL Deaf Community, and the oral deaf. All these myths produce is anger and disappointment in the families who are new to these issues, trying to raise their baby in this new-to-them world of hearing loss. They lose trust in the people giving them the information, and they are very likely to reject those they find they cannot trust. And that is probably the saddest outcome of all.
What myths did you encounter?
Friday, October 15, 2010
Another Viewpoint
In an earlier blog, "Does It Have To Be Either/Or", a person added a comment that has stuck with me. I have been mulling it over for a while, and I thought it was important enough to repeat it here in its own blog.
The comment is as follows:
I can only respond to this comment with my experience as a hearing person who learned ASL as an adult. I am an interpreter and a teacher. I teach deaf and hard of hearing children. I came to teaching in a much different way than most teachers of the deaf as I was an interpreter before I was a teacher and therefore my bias is that I have a cultural perspective on the Deaf Community rather than a pathological or deficit perspective.
When I see little kids with implants, even though I realize their parents have made that decision out of love and desire for their children to be the happiest and most successful thay can be, my heart hurts. It isn't a logical response but an emotional response. One lovely little deaf kid who will no longer be Deaf. A future member of the community - lost. A next generation of leadership, one for the current group of teens to mentor, no longer there. If your child with a (working) implant is actually bilingual and bicultural - bravo! This is unusual.
I know one challenge to youth programs I am involved in today is including deaf kids with CIs who do not sign fluently but are learning. How do we make the most of the precious time the ASL using deaf kids who can't hear at all have to actually socialize with complete freedom and ease as equals with their peers and yet still accommodate those kids who can't sign well enough to understand fluent ASL? The ASL using kids NEED time in an ASL envorinment for their own linguistic and cognitive development - they are all mainstreamed and have hearing parents so they don't get this opportunity very often. However, once the CI kids arrive, the number of kids using English-based signing and speech alone rises. This means the ASL using kids are once again (in the long list of times they are marginalized - home, school, everywhere they go) out of the loop and wondering what people are saying. This is a dilemma. No easy answers in a world where Deaf people are an increasingly tiny minority.
I hear what s/he is saying (the comment was anonymous). I am sorry that the commenter's heart is sad at the growing number of kids who are implanted. It doesn't change how I feel about my decision to have my daughter implanted. My allegiance as a parent is to my child only, and making the best decisions I can for her future. I knew at the time that this would not be a popular decision in the Deaf Community, but they are not my responsibility. My child is. However, it doesn't change the fact that many Deaf, do feel this personal pain at seeing these little kids wearing implants and jabbering away like hearing kids do. Their feelings deserve my respect.
The commenter's last paragraph is very important and relevant to what is happening now. How do we try to integrate those kids with implants who want to learn ASL into the Deaf Community, while continuing to support those kids who use ASL as their primary language, and need the Deaf Community for most of their social support? If there is a Deaf event, it is important for parents and the adults involved in it to impress upon the CI kids how important it is for them to use ASL at all times. The CI kids need the practice signing, and the ASL kids deserve complete access to all conversations that are going on. Your thoughts?
The comment is as follows:
I can only respond to this comment with my experience as a hearing person who learned ASL as an adult. I am an interpreter and a teacher. I teach deaf and hard of hearing children. I came to teaching in a much different way than most teachers of the deaf as I was an interpreter before I was a teacher and therefore my bias is that I have a cultural perspective on the Deaf Community rather than a pathological or deficit perspective.
When I see little kids with implants, even though I realize their parents have made that decision out of love and desire for their children to be the happiest and most successful thay can be, my heart hurts. It isn't a logical response but an emotional response. One lovely little deaf kid who will no longer be Deaf. A future member of the community - lost. A next generation of leadership, one for the current group of teens to mentor, no longer there. If your child with a (working) implant is actually bilingual and bicultural - bravo! This is unusual.
I know one challenge to youth programs I am involved in today is including deaf kids with CIs who do not sign fluently but are learning. How do we make the most of the precious time the ASL using deaf kids who can't hear at all have to actually socialize with complete freedom and ease as equals with their peers and yet still accommodate those kids who can't sign well enough to understand fluent ASL? The ASL using kids NEED time in an ASL envorinment for their own linguistic and cognitive development - they are all mainstreamed and have hearing parents so they don't get this opportunity very often. However, once the CI kids arrive, the number of kids using English-based signing and speech alone rises. This means the ASL using kids are once again (in the long list of times they are marginalized - home, school, everywhere they go) out of the loop and wondering what people are saying. This is a dilemma. No easy answers in a world where Deaf people are an increasingly tiny minority.
I hear what s/he is saying (the comment was anonymous). I am sorry that the commenter's heart is sad at the growing number of kids who are implanted. It doesn't change how I feel about my decision to have my daughter implanted. My allegiance as a parent is to my child only, and making the best decisions I can for her future. I knew at the time that this would not be a popular decision in the Deaf Community, but they are not my responsibility. My child is. However, it doesn't change the fact that many Deaf, do feel this personal pain at seeing these little kids wearing implants and jabbering away like hearing kids do. Their feelings deserve my respect.
The commenter's last paragraph is very important and relevant to what is happening now. How do we try to integrate those kids with implants who want to learn ASL into the Deaf Community, while continuing to support those kids who use ASL as their primary language, and need the Deaf Community for most of their social support? If there is a Deaf event, it is important for parents and the adults involved in it to impress upon the CI kids how important it is for them to use ASL at all times. The CI kids need the practice signing, and the ASL kids deserve complete access to all conversations that are going on. Your thoughts?
Monday, October 11, 2010
Bullying
All the recent tragedies in the news about suicides from bullying and harrassment has me concerned. I have seen some nasty bullying in comments over the years on various blogs in DeafRead. It is the biggest reason I won't yet let my daughter participate on this blog. I just can't trust the commenters to behave themselves around a 12 year old girl. The anonymity of the blogesphere seems to breed comtempt. But it is not just here. As noted above, people seem to be getting more callous and hard-hearted everywhere. Somewhere during the "Me" generation, parents forgot to teach their kids compassion for others. The things they can get away with online seem to have blurred the lines with face-to-face interactions as well. People simply seem to no longer care about the feelings of others. It seems that as long as they can justify their behavior to themselves, anything goes. If a teen takes her own life, and the bullys that made her life hell can justify laughing at her during her own funeral, there is something seriously wrong with how those kids were raised.
There is really only one solution to the problem, and it starts with the parents. We must, absolutely MUST start teaching our kids respect and tolerance for others. In. All. Situations.
If we are to teach this, we must first live this. Online, and in real life, we must learn how to respect one another even if we disagree with their opinion. Every human being deserves to be safe, in body and soul. There is no justification for putting somebody else down because you disagree with something they have done, or believe, or how they live. Tolerance for others must become a priority in our lives. Religious, cultural, sexual orientation, physical differences, and for the D/deaf community - choices in D/deaf lifestyle. I don't care how you feel about someone's implant. They have a right to have or not have one, and parents have the right to choose this for their kids. An implant or the lack of one, does not make the person. We all have the responsibility to respect each other and not put them down or bully them because of their or their parent's choices. If kids in a deaf school are teasing another kid because s/he has an implant, it is probably because they learned at home that it was ok to get down on someone with an implant. If you as a parent have allowed that attitude, and your kid has become a bully because of it, you have some serious mirror work to do. Can any of us look at ourselves in the mirror without shame if we have allowed intolerance to fester in ourselves or our kids?
The only thing we cannot tolerate is intolerance. Please talk to your kids. Please look at the message you are sending them with your own words and actions. Please teach the difference between having an opinion different from someone else's and disrespecting them because of it. You never know when it will save a life.
There is really only one solution to the problem, and it starts with the parents. We must, absolutely MUST start teaching our kids respect and tolerance for others. In. All. Situations.
If we are to teach this, we must first live this. Online, and in real life, we must learn how to respect one another even if we disagree with their opinion. Every human being deserves to be safe, in body and soul. There is no justification for putting somebody else down because you disagree with something they have done, or believe, or how they live. Tolerance for others must become a priority in our lives. Religious, cultural, sexual orientation, physical differences, and for the D/deaf community - choices in D/deaf lifestyle. I don't care how you feel about someone's implant. They have a right to have or not have one, and parents have the right to choose this for their kids. An implant or the lack of one, does not make the person. We all have the responsibility to respect each other and not put them down or bully them because of their or their parent's choices. If kids in a deaf school are teasing another kid because s/he has an implant, it is probably because they learned at home that it was ok to get down on someone with an implant. If you as a parent have allowed that attitude, and your kid has become a bully because of it, you have some serious mirror work to do. Can any of us look at ourselves in the mirror without shame if we have allowed intolerance to fester in ourselves or our kids?
The only thing we cannot tolerate is intolerance. Please talk to your kids. Please look at the message you are sending them with your own words and actions. Please teach the difference between having an opinion different from someone else's and disrespecting them because of it. You never know when it will save a life.
Monday, September 20, 2010
Does It Have To Be Either/Or?
If there is one thing that confuses me about Deaf Culture, it is the seemingly insurmountable wall between ASL Deaf and oral deaf. I know absolutely that there are people out there who happily live in both spaces. They sign, they talk, they live their lives. But there also seems to be this attitude that proclaims "If you were oral and are part of the ASL Deaf Culture, then being oral deaf must have failed for you." People seem to question the success of implants if they see a Deaf person with a CI who is signing and an active member of the Deaf Community. Is there no room for someone who wants a Deaf Identity, who also enjoys the use of their implant?
My daughter is developing her Deaf Identity. She knows she is deaf, and would not change that. She likes being around other D/deaf people. She doesn't care if they are CI recipients, have hearing aids, or if they are ASL Deaf. She feels comfortable being around other D/deaf people. I would not change that for anything. I think it is important for her to have a good self image, and feel good about who she is. But she also loves her implants. She used to cry if we tried to take them off for naps or at bed time. She has an extensive CD collection, and loves music. She talks naturally and easily to her hearing friends. She even talks in her sleep.
I would not be surprised if she chooses to go to Gally for college. If her dream is to become an interpreter, that would be the best choice for her. I see in her, the ability to accept all types of deafness in other people, without judgement or prejudice. But I cannot say the same thing in return. If you see a deaf person with a CI using ASL, do you think "Their choice, their life, fine with me." or do you think "The CI must not work if they have to sign."
Some Deaf have said that they would welcome CI deaf into the Deaf Community if they respect and use ASL, even if they continue to use their implants. But the moment they show up, the response seems to be, "See, they need ASL. The implant must not work because here they are." I see it differently. I see that the Deaf Community is doing something right if CI deaf feel comfortable enough to want to participate in the Deaf Community even if they can easily speak and hear with their implants. What do you think? Please keep the comments respectful, or I will use my delete option. This is a moderated site.
My daughter is developing her Deaf Identity. She knows she is deaf, and would not change that. She likes being around other D/deaf people. She doesn't care if they are CI recipients, have hearing aids, or if they are ASL Deaf. She feels comfortable being around other D/deaf people. I would not change that for anything. I think it is important for her to have a good self image, and feel good about who she is. But she also loves her implants. She used to cry if we tried to take them off for naps or at bed time. She has an extensive CD collection, and loves music. She talks naturally and easily to her hearing friends. She even talks in her sleep.
I would not be surprised if she chooses to go to Gally for college. If her dream is to become an interpreter, that would be the best choice for her. I see in her, the ability to accept all types of deafness in other people, without judgement or prejudice. But I cannot say the same thing in return. If you see a deaf person with a CI using ASL, do you think "Their choice, their life, fine with me." or do you think "The CI must not work if they have to sign."
Some Deaf have said that they would welcome CI deaf into the Deaf Community if they respect and use ASL, even if they continue to use their implants. But the moment they show up, the response seems to be, "See, they need ASL. The implant must not work because here they are." I see it differently. I see that the Deaf Community is doing something right if CI deaf feel comfortable enough to want to participate in the Deaf Community even if they can easily speak and hear with their implants. What do you think? Please keep the comments respectful, or I will use my delete option. This is a moderated site.
Monday, August 2, 2010
Audiogram
I have said before that my daughter has made amazing use of her implants. She has especially good use with her left one, which she has had since she was 12 months old. She had a booth test the other day, along with testing in noise. I don't have the noise test report back yet, but here is her audiogram. CL is her left cochlear implant hearing, and CR is her right cochlear implant hearing.
Monday, July 19, 2010
This Week - Church Camp
My on-the-go kid got back from deaf camp, spent a long weekend with us at a family get-together, spent half of the next week with her grandparents, and is now off to church camp.
She has been a busy girl, but that is what summer is for. She loves deaf camp, but she also loves church camp. There are no other deaf kids at church camp that I know of. She will spend the next week with other jr. high kids from across the region. Hearing kids. And she will be fine. She will not have communication issues, just as she did not have communication issues at deaf camp. She is bilingual. That was our goal. Is she totally fluent in ASL? Not yet. But her skills are good enough to allow her to be independent within the Deaf Community. And she will continue to improve, because she wants to, and we want her to. We will continue to provide her with opportunities to improve her ASL skills. But she is also able to be independent in the hearing world. Is her hearing as good as the other kids at camp? No. Will it ever be? Probably not. But it also does not pose a major road block. She can speak and hear well enough for us to comfortably send her to a hearing church camp without an interpreter or any other communication aids. She jumps right in and starts chattering with the other kids at the table. Time for mom and dad to go. She has already moved on from goodbye without a backward glance. Just like she did at deaf camp.
This is what we wanted for her. The ability to choose her own path, and to be able to navigate that path with ease. Have fun at camp kiddo.
She has been a busy girl, but that is what summer is for. She loves deaf camp, but she also loves church camp. There are no other deaf kids at church camp that I know of. She will spend the next week with other jr. high kids from across the region. Hearing kids. And she will be fine. She will not have communication issues, just as she did not have communication issues at deaf camp. She is bilingual. That was our goal. Is she totally fluent in ASL? Not yet. But her skills are good enough to allow her to be independent within the Deaf Community. And she will continue to improve, because she wants to, and we want her to. We will continue to provide her with opportunities to improve her ASL skills. But she is also able to be independent in the hearing world. Is her hearing as good as the other kids at camp? No. Will it ever be? Probably not. But it also does not pose a major road block. She can speak and hear well enough for us to comfortably send her to a hearing church camp without an interpreter or any other communication aids. She jumps right in and starts chattering with the other kids at the table. Time for mom and dad to go. She has already moved on from goodbye without a backward glance. Just like she did at deaf camp.
This is what we wanted for her. The ability to choose her own path, and to be able to navigate that path with ease. Have fun at camp kiddo.
Monday, June 28, 2010
Will She Win the Chatty Kathy Award This Year?
We took our 12 year old daughter to camp yesterday. Such an insecure child (not). She was barely aware of us as we drove off, just managing to wave goodbye, before she was off to visit old friends and make new ones. Her counselors this year are totally ASL, with no voice. She didn't seem to have any concerns, and dove right in with her signing. It does not matter whether she uses her voice or her hands, she is a talker. Every child gets an "award" certificate at the end of the week. I can't remember what she got last year, but the year before, she got the Chatty Kathy award. I am positive that she earned it. The girl can chatter. We have to regularly remind her that half of a conversation is listening to the other person. "Oh yeah!" I am very hopeful this year that she will not only improve her ASL skills, but that she will spend more time letting the other person get a word in edgewise. Hey, a mom can dream can't she?
Thursday, June 17, 2010
Creating Divisions
Friday, June 4, 2010
Speaking of Camps...
If you are in or around Oregon, there is a wonderful kids Deaf Camp called Camp Taloali. Here is the link: http://www.taloali.us/
They use primarily ASL, but are capable of handling both SEE sign and kids who are primarily verbal with implants. They also allow siblings and friends if room is available.
My daughter has gone there for the past two years, and she loves it. She has really been working on her ASL skills this year, so we will see how much she has improved since last summer.
They use primarily ASL, but are capable of handling both SEE sign and kids who are primarily verbal with implants. They also allow siblings and friends if room is available.
My daughter has gone there for the past two years, and she loves it. She has really been working on her ASL skills this year, so we will see how much she has improved since last summer.
Monday, May 31, 2010
Camp Mark Seven for HoH and CI users
Hard-of-Hearing and Cochlear Implant Camp Sessions
Youth Session: Hard-of-Hearing & Cochlear Implant users July 25 to August 6, 2010
Children’s Session: Hard-of-Hearing & Cochlear Implant users August 8 to August 20, 2010
Information:
CM7 is offering a new camp program this summer for children and youth who are hard of hearing or with a cochlear implant. Spoken English will be the primary mode of communication. CM7 counselors, themselves hard of hearing or with cochlear implants, will be employed, thus serving as excellent role models.
This program will occur at the same time as the Deaf Children’s and Youth programs; however, the majority of activities for each program will be separate, geared towards the needs of campers for each program. Campers enrolled in each session may use sign language with Deaf campers and staff during shared meal times and certain activities.
Each session runs for two weeks: Children’s session (ages 9-12), and Youth Session (ages 13-16). Campers will have many opportunities to participate in different activities, to discuss their unique identity, and develop own leadership skills.
Waterfront activities will include swimming and tubing. Hiking, canoeing and camping overnight in the wilderness will offer each camper the opportunity to learn to appreciate and embrace Mother Nature.
http://www.campmark7.org/
Friday, May 21, 2010
Grateful
Back in late 1998, my baby girl came down with meningitis. It was a scary, stressful time for our whole family. We knew before she left the hospital that the disease had claimed her hearing. We also knew we wanted to look into a new option for partial restoration of hearing - the cochlear implant. It was a mad scramble time for us. She still had many health issues, and we had many medical appointments as well as beginning to climb the HUGE learning curve that is deafness.
By early spring in 1999, we had chosen to go the SEE sign total communication path, along with getting the cochlear implant. But back then, there were not a lot of children in our area who had one, so we only had adults to talk to. And there weren't many of them either. Along came a 60 Minutes episode featuring a 14 year old girl named Caitlin Parton. This was actually a follow-up on an episode originally done when she was six years old. The program showed some of that initial episode, along with her current life at 14. She was the first child with an implant that I had actually heard speaking and interacting with people verbally. This was the first real hope I had that this scary path we had decided upon would actually give our daughter usable hearing. If our daughter could get half of what Caitlin had, we would be thrilled. I cried through most of the program.
Our daughter took to the implant like a duck takes to water. She had hearing aids, which she hated, but by the time we got home from her first appointment to activate the implant, she wanted it on. She stunned even the doctors with how quickly she progressed, and how well she did with her implant. She now has bilateral implants, and is in middle school. She is almost as old as Caitlin was when that 60 minutes episode was aired. And she is doing just as well.
Caitlin is an adult now, and has recently had her story told here:
http://www.newstimes.com/default/article/Woog-s-World-The-Parton-family-speaks-up-494864.php
I just want to take this opportunity to thank Caitlin and her family for their willingness to tell their story publicly. I know they faced a great deal of criticism from the Deaf Community because of their decision to give her an implant. But they also gave hope to a lot of families like ours, when we really needed it. One reason I blog is in honor of them and others who came before me to help pave the way. Paying it forward and giving hope to families who follow me is the way I can say thanks to them for their bravery and willingness to go public with their stories.
Thanks Caitlin (and parents).
By early spring in 1999, we had chosen to go the SEE sign total communication path, along with getting the cochlear implant. But back then, there were not a lot of children in our area who had one, so we only had adults to talk to. And there weren't many of them either. Along came a 60 Minutes episode featuring a 14 year old girl named Caitlin Parton. This was actually a follow-up on an episode originally done when she was six years old. The program showed some of that initial episode, along with her current life at 14. She was the first child with an implant that I had actually heard speaking and interacting with people verbally. This was the first real hope I had that this scary path we had decided upon would actually give our daughter usable hearing. If our daughter could get half of what Caitlin had, we would be thrilled. I cried through most of the program.
Our daughter took to the implant like a duck takes to water. She had hearing aids, which she hated, but by the time we got home from her first appointment to activate the implant, she wanted it on. She stunned even the doctors with how quickly she progressed, and how well she did with her implant. She now has bilateral implants, and is in middle school. She is almost as old as Caitlin was when that 60 minutes episode was aired. And she is doing just as well.
Caitlin is an adult now, and has recently had her story told here:
http://www.newstimes.com/default/article/Woog-s-World-The-Parton-family-speaks-up-494864.php
I just want to take this opportunity to thank Caitlin and her family for their willingness to tell their story publicly. I know they faced a great deal of criticism from the Deaf Community because of their decision to give her an implant. But they also gave hope to a lot of families like ours, when we really needed it. One reason I blog is in honor of them and others who came before me to help pave the way. Paying it forward and giving hope to families who follow me is the way I can say thanks to them for their bravery and willingness to go public with their stories.
Thanks Caitlin (and parents).
Tuesday, April 20, 2010
Your Child Has a Cochlear Implant: Why Include Sign Language?
This article was published in the Spring 2008 edition of The Endeavor, the magazine of the American Society for Deaf Children (www.deafchildren.org). It is reprinted here with permission.
Debra Nussbaum is an audiologist and coordinator of the Cochlear Implant Education Center at the Laurent Clerc National Deaf Education Center at Gallaudet University.
Over the past 10 years of my 30-year career in deaf education, I have focused on children with cochlear implants. I've worked directly with hundreds of children and their families, attended countless workshops and conferences, and networked with thousands of professionals on this topic. I have witnessed the potential of this technology to provide quality sound to children who are deaf. I also have observed that just getting a cochlear implant is no guarantee that a child will be able to learn to listen so well that he or she can use only listening to learn.
Each child with a cochlear implant is unique, and there does not appear to be a single approach that is the one right approach to develop language and communication for all children with cochlear implants. For this reason, the Cochlear Implant Education Center (CIEC) at the Laurent Clerc National Deaf Education Center at Gallaudet University is focusing on examining a variety of ideas and strategies for children with cochlear implants that value and develop spoken language while also valuing and developing sign language and Deaf identity.
Maybe you've heard the frequently expressed opinion associated with cochlear implants within some parts of the medical and deaf education community that "the use of sign language will limit the outcomes for spoken language development through the cochlear implant." We continue to find that families are counseled to either never sign with their child (even prior to a young child's getting a cochlear implant) or to stop signing with their child (even older children who have used sign language for quite a while) once they get their cochlear implant. When this notion is conveyed to families of children getting cochlear implants, it is difficult for families to provide evidence and support for why sign language should be included. As there is not yet enough research, why should the use of sign language be considered for a child with a cochlear implant?
Here are a few things to think about:
-For young children, cochlear implant surgery does not typically occur until approximately 12 months of age. By the time the speech processor of the implant is turned on and the child has even a brief opportunity to access quality sound, at least 14-15 months of prime language learning time has passed. Recognizing the crucial importance of establishing language foundations early in a child's life, it makes sense that sign language should at least be considered as a foundation of early language for a child until the auditory sense has time to develop and the child has opportunities to listen.
-For older children (beyond the early language acquisition years) who are established, successful sign language users and who then get a cochlear implant, the transition to becoming an auditory-only learner may not be realistic. The cochlear implant may offer the child awareness and enjoyment of sound and the ability to develop some important skills in communicating via spoken language and developing literacy. However, spoken language may not become the child's primary way to communicate.
-Some children, even with a cochlear implant, may struggle to develop listening and speaking skills. They are wired to learn more visually. It is often not clear what a child's learning style will be with a cochlear implant and whether sign language could and should be an integral part of the language and communication practices. If a child with a cochlear implant does acquire a greater competence and a preference for using sign language and does not develop equal competence in spoken English, it is important that the child's proficiency in sign language be valued and the child not seen as a failure with his or her cochlear implant.
-A cochlear implant is a physical device. It can break, the batteries can die, it can get lost, children may refuse to wear it, the internal device can fail, and nobody wears it 24 hours a day (contact sports, bathing, etc.). A child's competence in sign language offers language and communication abilities that are beneficial when the cochlear implant may not be available.
-Bilingual development and the use of both American Sign Language (ASL) and spoken English as separate languages should be strongly considered as a "first choice" option for children with cochlear implants. If both ASL and spoken English are developed and used before and after a child receives a cochlear implant, this approach can promote competence in two languages which can benefit the child in his or her learning, social interactions, and identity as a deaf individual.
-If an oral environment is being considered for a child with a cochlear implant who also uses sign language, it is beneficial to consider using guidelines to confirm whether the child is ready for such a transition. For an example of such guidelines, see: Children with Cochlear Implants Who Sign: Guidelines for Transitioning to Oral Education or a Mainstream Setting (PDF) from Children's Hospital. These guidelines also can be used to document the functioning of a child in an oral environment to determine whether he or she could be better served in an environment that includes sign language.
At Kendall Demonstration Elementary School at the Clerc Center, we have designed a bilingual ASL/spoken English model to meet the needs of children with cochlear implants and are evaluating its effectiveness. We are finding that with appropriate planning and supports in place, many children with cochlear implants are developing language foundations in both ASL and spoken English, and that sign language is not limiting their spoken language development. In fact, we are finding that the use of sign language is beneficial in helping children build their skills in spoken English.
Use of cochlear implants and a bilingual ASL/spoken English model is gaining momentum with both hearing families, deaf families and the greater Deaf community. We are observing a recent trend with deaf families beginning to consider cochlear implants for their young deaf children. In addition, we are seeing emerging discussion within the Deaf community regarding the benefits of using both ASL and cochlear implants. For more information about issues surrounding ASL and cochlear implants, refer to the ASL-Cochlear Implant Community website, http://aslci.blogspot.com. (K.L. comment - Yes I know this is referring to us. It was in the article)
Making choices about the best way to approach language and communication development for a child with a cochlear implant is not always clear. While the goal of obtaining a cochlear implant is to increase a child's potential to access sound for the purpose of developing spoken language, it is important to keep this goal in perspective with all of a child's needs and look at how sign language can be included. Yes, spoken language must be addressed and valued in the child's environment, but sign language also can play an important role.
For further discussion about using both sign language and spoken language as an option for children with cochlear implants, see the following resources:
Nussbaum, D. Cochlear Implants: Navigating a Forest of Information: One Tree at a Time
Children with Cochlear Implants Who Sign: Guidelines for Transitioning to Oral Education or a Mainstream Setting (PDF)
Sign of the (Changing) Times. Loud and Clear, A Cochlear Implant Rehabilitation Newsletter, Issue 2, 2006. (PDF)
Chute, P., & Nevins, M. E. (2002). The Parents' Guide to Cochlear Implants. Washington, DC: Available from Gallaudet University Press
Christiansen, J., & Leigh, I. (2002). Cochlear implants in children: Ethics and choices. Washington, DC: Available from Gallaudet University Press
Debra Nussbaum is an audiologist and coordinator of the Cochlear Implant Education Center at the Laurent Clerc National Deaf Education Center at Gallaudet University.
Over the past 10 years of my 30-year career in deaf education, I have focused on children with cochlear implants. I've worked directly with hundreds of children and their families, attended countless workshops and conferences, and networked with thousands of professionals on this topic. I have witnessed the potential of this technology to provide quality sound to children who are deaf. I also have observed that just getting a cochlear implant is no guarantee that a child will be able to learn to listen so well that he or she can use only listening to learn.
Each child with a cochlear implant is unique, and there does not appear to be a single approach that is the one right approach to develop language and communication for all children with cochlear implants. For this reason, the Cochlear Implant Education Center (CIEC) at the Laurent Clerc National Deaf Education Center at Gallaudet University is focusing on examining a variety of ideas and strategies for children with cochlear implants that value and develop spoken language while also valuing and developing sign language and Deaf identity.
Maybe you've heard the frequently expressed opinion associated with cochlear implants within some parts of the medical and deaf education community that "the use of sign language will limit the outcomes for spoken language development through the cochlear implant." We continue to find that families are counseled to either never sign with their child (even prior to a young child's getting a cochlear implant) or to stop signing with their child (even older children who have used sign language for quite a while) once they get their cochlear implant. When this notion is conveyed to families of children getting cochlear implants, it is difficult for families to provide evidence and support for why sign language should be included. As there is not yet enough research, why should the use of sign language be considered for a child with a cochlear implant?
Here are a few things to think about:
-For young children, cochlear implant surgery does not typically occur until approximately 12 months of age. By the time the speech processor of the implant is turned on and the child has even a brief opportunity to access quality sound, at least 14-15 months of prime language learning time has passed. Recognizing the crucial importance of establishing language foundations early in a child's life, it makes sense that sign language should at least be considered as a foundation of early language for a child until the auditory sense has time to develop and the child has opportunities to listen.
-For older children (beyond the early language acquisition years) who are established, successful sign language users and who then get a cochlear implant, the transition to becoming an auditory-only learner may not be realistic. The cochlear implant may offer the child awareness and enjoyment of sound and the ability to develop some important skills in communicating via spoken language and developing literacy. However, spoken language may not become the child's primary way to communicate.
-Some children, even with a cochlear implant, may struggle to develop listening and speaking skills. They are wired to learn more visually. It is often not clear what a child's learning style will be with a cochlear implant and whether sign language could and should be an integral part of the language and communication practices. If a child with a cochlear implant does acquire a greater competence and a preference for using sign language and does not develop equal competence in spoken English, it is important that the child's proficiency in sign language be valued and the child not seen as a failure with his or her cochlear implant.
-A cochlear implant is a physical device. It can break, the batteries can die, it can get lost, children may refuse to wear it, the internal device can fail, and nobody wears it 24 hours a day (contact sports, bathing, etc.). A child's competence in sign language offers language and communication abilities that are beneficial when the cochlear implant may not be available.
-Bilingual development and the use of both American Sign Language (ASL) and spoken English as separate languages should be strongly considered as a "first choice" option for children with cochlear implants. If both ASL and spoken English are developed and used before and after a child receives a cochlear implant, this approach can promote competence in two languages which can benefit the child in his or her learning, social interactions, and identity as a deaf individual.
-If an oral environment is being considered for a child with a cochlear implant who also uses sign language, it is beneficial to consider using guidelines to confirm whether the child is ready for such a transition. For an example of such guidelines, see: Children with Cochlear Implants Who Sign: Guidelines for Transitioning to Oral Education or a Mainstream Setting (PDF) from Children's Hospital. These guidelines also can be used to document the functioning of a child in an oral environment to determine whether he or she could be better served in an environment that includes sign language.
At Kendall Demonstration Elementary School at the Clerc Center, we have designed a bilingual ASL/spoken English model to meet the needs of children with cochlear implants and are evaluating its effectiveness. We are finding that with appropriate planning and supports in place, many children with cochlear implants are developing language foundations in both ASL and spoken English, and that sign language is not limiting their spoken language development. In fact, we are finding that the use of sign language is beneficial in helping children build their skills in spoken English.
Use of cochlear implants and a bilingual ASL/spoken English model is gaining momentum with both hearing families, deaf families and the greater Deaf community. We are observing a recent trend with deaf families beginning to consider cochlear implants for their young deaf children. In addition, we are seeing emerging discussion within the Deaf community regarding the benefits of using both ASL and cochlear implants. For more information about issues surrounding ASL and cochlear implants, refer to the ASL-Cochlear Implant Community website, http://aslci.blogspot.com. (K.L. comment - Yes I know this is referring to us. It was in the article)
Making choices about the best way to approach language and communication development for a child with a cochlear implant is not always clear. While the goal of obtaining a cochlear implant is to increase a child's potential to access sound for the purpose of developing spoken language, it is important to keep this goal in perspective with all of a child's needs and look at how sign language can be included. Yes, spoken language must be addressed and valued in the child's environment, but sign language also can play an important role.
For further discussion about using both sign language and spoken language as an option for children with cochlear implants, see the following resources:
Nussbaum, D. Cochlear Implants: Navigating a Forest of Information: One Tree at a Time
Children with Cochlear Implants Who Sign: Guidelines for Transitioning to Oral Education or a Mainstream Setting (PDF)
Sign of the (Changing) Times. Loud and Clear, A Cochlear Implant Rehabilitation Newsletter, Issue 2, 2006. (PDF)
Chute, P., & Nevins, M. E. (2002). The Parents' Guide to Cochlear Implants. Washington, DC: Available from Gallaudet University Press
Christiansen, J., & Leigh, I. (2002). Cochlear implants in children: Ethics and choices. Washington, DC: Available from Gallaudet University Press
Thursday, April 15, 2010
ESOL/Bilingual Programs Don’t Apply to ASL/Spoken English Students at Public Schools
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-written by Anonymous Deaf mother of Deaf ASL CI User
I just visited a public school in our neighborhood to consider enrolling my son for Kindergarten next fall and my son's current speech therapist joined us for the visit to provide support. We met with the school’s speech therapist and she was very excited to work with my son who has a CI as she has never worked with one but has heard a lot about CI. She usually works with hearing children who have language delays, some of them due to learning disabilities or autism but not with bilingual students who participate in ESOL (English for Speakers of Other Languages) program.
My son is still learning to improve his English grammar because he is fluent in ASL at home with his Deaf parents. So, we consider him being bilingual in ASL and spoken English and it may take him a little longer to become completely proficient in both languages like many other bilingual children (Spanish-English, Chinese-English, etc). Our speech therapist told us that the ESOL/Bilingual program doesn’t apply to my son but he would still need speech therapy although he doesn’t have significant delay in spoken language. Is it because ASL isn’t considered a language in their school system? That sort of bothers me.
There are so many bilingual children at the school that need ESOL/Bilingual services and they don’t include ASL users. I also have heard that some of KODAs (hearing Kids of Deaf Adults) are delayed in English at an early age since they use ASL at home as their first language and I think that the ESOL may be beneficial for them, too. Should we request for an ASL/English specialist to participate in those programs for deaf/hard of hearing children and KODAs at public schools? Does ESOL only apply to spoken foreign languages but not ASL because it is a visual language? The philosophy at their school system is as follows.
The goal of the ESOL program is to help the English Language Learners (ELLs) enrolled in the ESOL program to learn enough English to function linguistically and culturally in the County Public Schools and in the mainstream of American society. The education of the ELLs is a collaborative responsibility shared by the ESOL teacher, the classroom teacher, all other appropriate school staff, as well as the ELL student.
Anonymous Author
Wednesday, April 14, 2010
Survey for CI users using ASL as primary/secondary language
An audiology student at Gallaudet University sent us an email asking us to share with the rest of the community the link to her research project with the hopes to get more survey responses.
Survey participants must:
Below is an short bio of the researcher, an explanation of this research and why this survey is useful:
I am the survey administrator and my name is Kristine Moore. I am a 3rd year Doctorate of Audiology Graduate Student at Gallaudet University. Gallaudet is a university in Washington, D.C. exclusively for deaf and hard of hearing individuals. Gallaudet accepts some hearing people each year, but it is designed and run with deafness as the primary and most influential factor. It's an incredible place. The discussion of ASL and cochlear implants and how the two can coincide successfully is a pertinent topic for the campus and for culture as a whole. For my research project I hope to study this area further by researching the factors influencing the decision to obtain cochlear implant(s) in individuals who use American Sign Language as a primary or secondary language. PLEASE click on the link to take the COMPLETELY CONFIDENTIAL survey to further the understanding of this topic. THANK YOU for generous gift of your time and survey responses.
PLEASE click on the link below to take a CONFIDENTIAL survey about Cochlear Implants and American Sign Language:
https://www.surveymonkey.com/s/ASLandCochlearImplantUsersPLEASETakeThisGallaudetUniversityResearchSurvey
Survey participants must:
- be 18 or older,
- Must have had cochlear implant(s) at one time...either currently using or discontinued use accepted, and
- must use ASL as a primary or secondary language.
Below is an short bio of the researcher, an explanation of this research and why this survey is useful:
I am the survey administrator and my name is Kristine Moore. I am a 3rd year Doctorate of Audiology Graduate Student at Gallaudet University. Gallaudet is a university in Washington, D.C. exclusively for deaf and hard of hearing individuals. Gallaudet accepts some hearing people each year, but it is designed and run with deafness as the primary and most influential factor. It's an incredible place. The discussion of ASL and cochlear implants and how the two can coincide successfully is a pertinent topic for the campus and for culture as a whole. For my research project I hope to study this area further by researching the factors influencing the decision to obtain cochlear implant(s) in individuals who use American Sign Language as a primary or secondary language. PLEASE click on the link to take the COMPLETELY CONFIDENTIAL survey to further the understanding of this topic. THANK YOU for generous gift of your time and survey responses.
PLEASE click on the link below to take a CONFIDENTIAL survey about Cochlear Implants and American Sign Language:
https://www.surveymonkey.com/s/ASLandCochlearImplantUsersPLEASETakeThisGallaudetUniversityResearchSurvey
Wednesday, April 7, 2010
Study finds Toddlers with Implants Process Language Slower than Hearing Peers
I came across a very interesting article that falls right in line with what I have observed with my daughter. Here is the link to the study:
http://www.niu.edu/northerntoday/2010/feb22/grieco-calub.shtml
Briefly, it states that of the two year olds in the study, the ones with implants processed language slower than their hearing peers. I fully agree with that, and the recommendations in the article about how to help the kids with implants overcome the obstacle.
One thing I did not see was whether or not the kids with implants had one or two implants. I have seen my daughter's language processing time get better since she got her second implant. I am curious if having two implants would make a difference in the speech processing time in a study.
If you or your child has bilateral implants, have you noticed a difference in the speed at which understanding of speech takes place, compared to only having one implant?
http://www.niu.edu/northerntoday/2010/feb22/grieco-calub.shtml
Briefly, it states that of the two year olds in the study, the ones with implants processed language slower than their hearing peers. I fully agree with that, and the recommendations in the article about how to help the kids with implants overcome the obstacle.
One thing I did not see was whether or not the kids with implants had one or two implants. I have seen my daughter's language processing time get better since she got her second implant. I am curious if having two implants would make a difference in the speech processing time in a study.
If you or your child has bilateral implants, have you noticed a difference in the speed at which understanding of speech takes place, compared to only having one implant?
Sunday, March 28, 2010
Impact of CIs on sign language interpreters
I am forwarding a request from a interpreting student for his assignment. Could you help answer his questions below?
Hello,
I'm a first year student at the Hogeschool Utrecht, The Netherlands, where I study to become a sign language interpreter.
For an assignment I'm trying to find out what kind of impact the rising number of CI users will have on sign language interpreters.
I'm very curious to know what we, as future sign language interpreters, have to keep in mind when interpreting for children with a CI.
Unfortunatly it's very hard to find information about this subject. I was hoping maybe you will be able to help me with a few questions.
-Do children with a CI have different needs when it comes to interpreting and what aspects should interpreters pay extra attention to?
-What kind of interpreting is preferred for children with a CI? ASL, Manually Coded English or other?
-Do you believe children with a CI will be in need of a interpreter (sometimes) as they grow up?
I apologise if I made language errors, English isn't my native language. I hope you will be able to give me some information, or maybe you'd like to share some stories.
Kind regards,
Marrit Slemmer
Hello,
I'm a first year student at the Hogeschool Utrecht, The Netherlands, where I study to become a sign language interpreter.
For an assignment I'm trying to find out what kind of impact the rising number of CI users will have on sign language interpreters.
I'm very curious to know what we, as future sign language interpreters, have to keep in mind when interpreting for children with a CI.
Unfortunatly it's very hard to find information about this subject. I was hoping maybe you will be able to help me with a few questions.
-Do children with a CI have different needs when it comes to interpreting and what aspects should interpreters pay extra attention to?
-What kind of interpreting is preferred for children with a CI? ASL, Manually Coded English or other?
-Do you believe children with a CI will be in need of a interpreter (sometimes) as they grow up?
I apologise if I made language errors, English isn't my native language. I hope you will be able to give me some information, or maybe you'd like to share some stories.
Kind regards,
Marrit Slemmer
Sunday, March 21, 2010
Student Researcher needs young CI users to participate in a online survey
A deaf/hh graduate student majoring in Audiology at Gallaudet University is doing a research study project titled "Young Adults’ Perspectives on Their Communication Experiences with Cochlear Implants."
He is looking for participants (with cochlear implants) that would like to share their thoughts and communication experiences using their cochlear implants. He has created an online survey for those who would like to participate. Please click on the link below. It takes about 20-30 minutes to complete the survey.
https://www.surveymonkey.com/
This study is not limited only to Cochlear Implant users who use ASL, but anyone who is above the age of 18 and has a cochlear implant. Your help to reach out to the emerging population of cochlear implant users to participate the online survey would be greatly appreciated.
This research study has been approved by the the Institutional Review Board.
Monday, March 15, 2010
Can We Help Marina?
I received a response in the comments section of my last blog from Marina. She needs advice, and I think it needs a bigger response than any one of us can handle alone.
Marina writes: "I am an advocate for the Deaf in Armenia, a country where the latest "trend" or "fashion" is to have deaf children implanted. The tragedy is that the parents and the deaf community is not well informed about cochlear implants. I do have a site, called http://www.unheardvoicesofarmenia.blogspot.com/. Please advise."
My answer is this: It is very important, if anyone is contemplating getting an implant, to be as educated as possible. You need to know what to expect for both the surgery, and the aural therapy required afterwards. You need to decide what type of therapy you want; Auditory/Verbal, Auditory/Oral, Total Communication, ASL-Verbal (or whatever sign language is called in Armenia); Verbal with Cued Speech or some other combination of the above. You also need to become educated on where the implant works well and where it doesn't, so your expectations are reasonable. To get an implant without understanding the therapy needs afterwards is a very bad idea. The doctors absolutely need to be sure that the patient (and/or the parents if the patient is a child) clearly understands that the implant is not a quick fix, and that it will take years of dedicated therapy to get the maximum value out of the implant.
It is also important to become well educated about the local Deaf Community. There is support there and options for families that many parents do not even know about. But whatever decision the parents make, there needs to be trust and continued communication between the parents and the Deaf Community. That can only happen if everyone is willing to be open without condemnation for choices made or not made. This goes both ways, and is essential for trust to be given.
How about it? What advice can you give Marina?
Marina writes: "I am an advocate for the Deaf in Armenia, a country where the latest "trend" or "fashion" is to have deaf children implanted. The tragedy is that the parents and the deaf community is not well informed about cochlear implants. I do have a site, called http://www.unheardvoicesofarmenia.blogspot.com/. Please advise."
My answer is this: It is very important, if anyone is contemplating getting an implant, to be as educated as possible. You need to know what to expect for both the surgery, and the aural therapy required afterwards. You need to decide what type of therapy you want; Auditory/Verbal, Auditory/Oral, Total Communication, ASL-Verbal (or whatever sign language is called in Armenia); Verbal with Cued Speech or some other combination of the above. You also need to become educated on where the implant works well and where it doesn't, so your expectations are reasonable. To get an implant without understanding the therapy needs afterwards is a very bad idea. The doctors absolutely need to be sure that the patient (and/or the parents if the patient is a child) clearly understands that the implant is not a quick fix, and that it will take years of dedicated therapy to get the maximum value out of the implant.
It is also important to become well educated about the local Deaf Community. There is support there and options for families that many parents do not even know about. But whatever decision the parents make, there needs to be trust and continued communication between the parents and the Deaf Community. That can only happen if everyone is willing to be open without condemnation for choices made or not made. This goes both ways, and is essential for trust to be given.
How about it? What advice can you give Marina?
Friday, February 26, 2010
Can you be a little bit Deaf?
Admittedly, my daughter is only 11 years old, living in a hearing family, using bilateral cochlear implants and has verbal speech as her primary language. However, she is fluent in SEE sign, and is quickly improving in ASL. She tends to hang out with the D/HH kids at lunchtime.
Is she deaf, or Deaf? We got into a conversation the other day about how she feels about her deafness. If she could wave a magic wand and "fix" her hearing so that she no longer needed implants, would she do that? Or would she wave that wand and remove her implants so she could neither talk nor hear at all? We talked about both options, and how if she had never lost her hearing, she would not have sign language. We would have never learned it nor taught it to her. If she had no implants, she would not have any hearing at all, so she would not have music and she would not be able to communicate easily with most of our extended family, especially the cousins she is so close to.
Turns out she is perfectly happy where she is. She would not wave that wand in either direction. She likes the hearing she gets with her implants, and she likes the ability to take them off and go silent. She loves to sign, and loves to use that ability with other deaf kids. Many people would say she is sitting on the fence between the deaf and the Deaf worlds. She sees herself as being able to fully participate in both. Does that make her a little bit Deaf? I don't know. I am just happy that so far, she feels good about herself and sees herself in a positive light.
Is she deaf, or Deaf? We got into a conversation the other day about how she feels about her deafness. If she could wave a magic wand and "fix" her hearing so that she no longer needed implants, would she do that? Or would she wave that wand and remove her implants so she could neither talk nor hear at all? We talked about both options, and how if she had never lost her hearing, she would not have sign language. We would have never learned it nor taught it to her. If she had no implants, she would not have any hearing at all, so she would not have music and she would not be able to communicate easily with most of our extended family, especially the cousins she is so close to.
Turns out she is perfectly happy where she is. She would not wave that wand in either direction. She likes the hearing she gets with her implants, and she likes the ability to take them off and go silent. She loves to sign, and loves to use that ability with other deaf kids. Many people would say she is sitting on the fence between the deaf and the Deaf worlds. She sees herself as being able to fully participate in both. Does that make her a little bit Deaf? I don't know. I am just happy that so far, she feels good about herself and sees herself in a positive light.
Saturday, February 20, 2010
Deafhood foundation
I just finished watching the welcome video for the Deafhood foundation. Before I started watching the video, I was wondering- would they mention cochlear implants? I was actually hoping that perhaps the message would be positive and inclusive. Wishful thinking.. Butch mentioned cochlear implants 33 seconds into the welcome message as an example of economic exploitation of deaf people. This did not make it into the English text version though.
The Deafhood foundation is run by well respected Deaf people in the Deaf community, and many Deaf people are impressed by the video and its powerful message. But all I see is a huge obstacle to the acceptance of all of these Deaf children with cochlear implants. Would this lead to increased intolerance for Deaf children who happen to have cochlear implants?
Friday, February 19, 2010
Ossified Cochleas are a Different Animal
When my daughter decided she wanted an implant for her other ear, we were told that since that cochlea was fully ossified (filled with bone), there was no way to predict how well it would work, or how long it would take to get maximum benefit. With most implant proceedures, two years is the general time frame between implantation and maximum benefit. Since she got her first implant before that cochlea ossified, it works very well. Ossified cochleas are a different beast entirely.
What she was able to do after two months with her original implant, took a year with her second implant. She has a complete insertion of the electrode array in her left ear, but only has 11 electrodes in her ossified right cochlea. Most of them tend to stimulate her facial nerve rather than her auditory nerve. Out of 11 electrodes, only 5 electrodes are active. You would think that this has been a complete waste of time and money. You would be completely wrong.
Having two working ears, even though one doesn't work well, has made a big improvement in her ability to hear in noise. And really, most of life exists in noise. Even before she could distinguish sound in her right ear, she was showing marked improvement in her overall hearing. At her 6 month check last summer, her overall hearing was 7% better with both implants than it was with her original implant alone. And at her check yesterday, she did really well on the closed set words even at 15 words.
We never really expected her right ear to work very well by itself, and were mostly hoping for what we have already gotten, better hearing in noise. But her brain is beginning to make sense of sound in that ear by itself, and it should continue to improve. Absolute bonus.
If you lost your hearing from meningitis, and you have ossified cochleas, you will want to think very carefully before getting implants. Progress will be extremely slow, and you will have to work VERY VERY HARD to get any use out of them. I would only recommend implants if you have a very strong dedication to wanting to hear, and you are willing to persevere. The good news is that it is possible. Just not easy.
What she was able to do after two months with her original implant, took a year with her second implant. She has a complete insertion of the electrode array in her left ear, but only has 11 electrodes in her ossified right cochlea. Most of them tend to stimulate her facial nerve rather than her auditory nerve. Out of 11 electrodes, only 5 electrodes are active. You would think that this has been a complete waste of time and money. You would be completely wrong.
Having two working ears, even though one doesn't work well, has made a big improvement in her ability to hear in noise. And really, most of life exists in noise. Even before she could distinguish sound in her right ear, she was showing marked improvement in her overall hearing. At her 6 month check last summer, her overall hearing was 7% better with both implants than it was with her original implant alone. And at her check yesterday, she did really well on the closed set words even at 15 words.
We never really expected her right ear to work very well by itself, and were mostly hoping for what we have already gotten, better hearing in noise. But her brain is beginning to make sense of sound in that ear by itself, and it should continue to improve. Absolute bonus.
If you lost your hearing from meningitis, and you have ossified cochleas, you will want to think very carefully before getting implants. Progress will be extremely slow, and you will have to work VERY VERY HARD to get any use out of them. I would only recommend implants if you have a very strong dedication to wanting to hear, and you are willing to persevere. The good news is that it is possible. Just not easy.
Monday, January 25, 2010
Musing on the Future
I was talking with friends the other day, and the subject came up about what the future would hold in regards to hearing loss issues. Things are in such flux right now. The scientific and medical communities are working together to find the causes and cures for deafness. Gene mapping is beginning to find out the "why" of many genetic forms of deafness. Stem cell research is getting closer to an actual cure for one form of deafness, by regenerating cochlear hair cells. The cochlear implant companies are furiously working to build a fully implantable cochlear implant that would not need to have a processor worn on the ear, that would not need to be turned on or off.
But with all the research and progress being made, much is being ignored. ASL is still the surest way to provide language to those without hearing. And it is still the only safety net for kids who don't make progress with implants, hearing aids, or verbal therapies. I can't help but think that any true cure is still many years away. And because deafness has so many causes, there will need to be many different cures before all of the causes are addressed. Also, any cure that becomes available, probably will not be of much benefit to adults. Even if the cause of the deafness can be corrected, the brain may not be able to make sense of the sound. Most adults who depend on ASL today will need it for the rest of their lives. And many kids today still rely on ASL for all their communication needs. It seems very shortsighted to close schools that provide ASL to these kids who need it so much. Even though there are more kids able to have access to verbal language now, we still need to provide access to ASL. Interpreters will still be needed and a vibrant Deaf Community will also still be needed.
It is very important that the oral deaf and the ASL Deaf continue to find common ground so they can work together. Without the support of everyone, kids may be denied the services they need, simply because those services are no longer available. I wish I had a crystal ball so I could see what the future will bring.
K.L.
But with all the research and progress being made, much is being ignored. ASL is still the surest way to provide language to those without hearing. And it is still the only safety net for kids who don't make progress with implants, hearing aids, or verbal therapies. I can't help but think that any true cure is still many years away. And because deafness has so many causes, there will need to be many different cures before all of the causes are addressed. Also, any cure that becomes available, probably will not be of much benefit to adults. Even if the cause of the deafness can be corrected, the brain may not be able to make sense of the sound. Most adults who depend on ASL today will need it for the rest of their lives. And many kids today still rely on ASL for all their communication needs. It seems very shortsighted to close schools that provide ASL to these kids who need it so much. Even though there are more kids able to have access to verbal language now, we still need to provide access to ASL. Interpreters will still be needed and a vibrant Deaf Community will also still be needed.
It is very important that the oral deaf and the ASL Deaf continue to find common ground so they can work together. Without the support of everyone, kids may be denied the services they need, simply because those services are no longer available. I wish I had a crystal ball so I could see what the future will bring.
K.L.
Monday, January 11, 2010
Update Time
I promised to do a follow-up blog on my daughter's visit to her cousin's ASL class, and a follow-up on her one year anniversary for her second implant.
First, the ASL class. My daughter had a written speech that she read to the class, then I took over and talked about how hearing works, how hearing aids work, how the implant works, and a little bit about the different kinds of hearing loss. I also talked about the different kinds of speech therapy and how implants are mapped. At the end, we both answer questions.
We talked to two classes, and got good questions from both of them. The kids were very attentive, and we had a lot of fun. My daughter especially enjoyed having lunch in the cafeteria with all the high school kids. Pretty cool stuff for an 11 year old.
Now about the one year progress. My daughter lost her hearing as a baby from meningitis, and her right cochlea ossified (turned to solid bone) within a couple of months. The surgery for her left cochlea was moved up in order to get the electrode array implanted before it also ossified. That surgery was successful, and she had very good progress with the single implant since then. But her hearing in noisy situations was not all that good. She wanted to get her right cochlea implanted even though it would not be a total "success" because of the ossification. So we went ahead with it, and she got a partial insertion of the electrode array, and ultimately has 8 electrodes working now. It has been slow progress, but at her 6 month check, her hearing in noise with both ears was only 6% below "normal" hearing, while her hearing with her left implant only was 12% below "normal".
When the doctor started checking her map, she found out that the map had gotten too quiet to test, so we spent the time remapping her. By the end of the session though, my daughter was thrilled. She is hearing better than she ever has before with the new map and she was practically bouncing off the walls. She will use the new map for the next 6 weeks, then we will go back into the sound booth to see how her new map is working for her. So I guess I'll have to promise another follow-up to everyone about how her right ear is coming along.
K.L.
First, the ASL class. My daughter had a written speech that she read to the class, then I took over and talked about how hearing works, how hearing aids work, how the implant works, and a little bit about the different kinds of hearing loss. I also talked about the different kinds of speech therapy and how implants are mapped. At the end, we both answer questions.
We talked to two classes, and got good questions from both of them. The kids were very attentive, and we had a lot of fun. My daughter especially enjoyed having lunch in the cafeteria with all the high school kids. Pretty cool stuff for an 11 year old.
Now about the one year progress. My daughter lost her hearing as a baby from meningitis, and her right cochlea ossified (turned to solid bone) within a couple of months. The surgery for her left cochlea was moved up in order to get the electrode array implanted before it also ossified. That surgery was successful, and she had very good progress with the single implant since then. But her hearing in noisy situations was not all that good. She wanted to get her right cochlea implanted even though it would not be a total "success" because of the ossification. So we went ahead with it, and she got a partial insertion of the electrode array, and ultimately has 8 electrodes working now. It has been slow progress, but at her 6 month check, her hearing in noise with both ears was only 6% below "normal" hearing, while her hearing with her left implant only was 12% below "normal".
When the doctor started checking her map, she found out that the map had gotten too quiet to test, so we spent the time remapping her. By the end of the session though, my daughter was thrilled. She is hearing better than she ever has before with the new map and she was practically bouncing off the walls. She will use the new map for the next 6 weeks, then we will go back into the sound booth to see how her new map is working for her. So I guess I'll have to promise another follow-up to everyone about how her right ear is coming along.
K.L.
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