Reasons For Toddler’s C.I in 1989.
A little long, but worthy reading the whole post:
When Rachel’s deafness was first diagnosed in 1989, she was only two months old. Fortunately, or so we thought at the time, the hospital that did Rachel’s ABR testing sent us to another audiologist and social worker immediately following her 2½ hours of hearing testing. However, what today sticks out in my mind is that these two professionals immediately hit us with the controversy in deaf education, which we knew nothing about at that point. The social worker told us that we could sign, speak or do both. Then, despite all the programs for deaf children in the Boston area, where we lived at the time, the only one she told us about was the Learning Center for Deaf Children, a signing school. When we returned for follow-up appointments, the audiologist called the A. G. Bell Association “a bunch of extremists” and told us that Rachel would likely never learn to speak English well.
.
I cannot imagine where my daughters would have been today had we listened to these first two professionals. Fortunately, we did not. The mother of an oral deaf child was the first parent whom I spoke to, the first one who got exactly what and how we were feeling. A month later, this family had us to their home and had another mother of an oral deaf child there as well. They spent a few hours with us, providing us with reams of information that they’d spent time in advance putting together for us. In addition, they spoke to us of the oral approach and told us why they had chosen that route and how their children were doing with it. When we got home, we did contact some parents who were using total communication, one in particular who had gotten rid of her daughter’s hearing aids and was only signing. However, we were nowhere near as impressed with this family and did not pursue their information further.
My husband and I are people to whom higher education is extremely important. We both have advanced degrees and wanted for our daughter to have all the same opportunities that we’d had. We read the statistics about reading levels of children in signing deaf schools, and we were very concerned that this was not what we wanted for our daughter. While I know that there are those in the signing deaf community who do not fit these stereotypes, these reading comprehension statistics are based on fact and not fiction, and we were not willing to take the chance.
Furthermore, neither of us nor anyone in our extended families knew sign language. Even if my husband and I learned sign, how would Rachel communicate with her grandparents, aunts, uncles and cousins? While I hear all the time about deaf children belonging and identifying with others in the deaf culture, this was not what we wanted. We had a child because we wanted to love her and raise her as part of our lives to share our knowledge and culture with. We wanted her to be fully a part of our family. For these reasons, and because we saw firsthand how well these other two oral children were doing, we opted for the oral approach.
Initially, we started with a program in Boston when Rachel was 4 months old. The program was for both parents and their babies and toddlers. We would go twice a week, Rachel made little progress that year both because of this and because, as we later found out, she was losing her residual hearing. Throughout this time, I also grew increasingly aggravated with the program director who kept questioning me, accusing me of wanting Rachel to be oral for myself and for how I thought it would look if she could not speak well. This was so far from the truth and to me, offensive. My husband and I wanted Rachel to learn to speak well so that she could have an easier time in life, so that she could communicate with everyone and not just with the small handful of people in the world who know ASL.
Our one week immersion program at the Beebe Center in Pennsylvania changed our lives. First of all, we met the warmest most caring group of professionals we had since Rachel’s deafness had first been diagnosed over a year before. Contrary to the myths we’d heard about the A-V approach, we encountered nothing but kind, gentle professionals and happy hearing and speaking deaf children. We left there invigorated with hope and infused with new ideas. Despite our optimism and efforts, though, Rachel’s auditory comprehension abilities didn’t progress. Between 10 and about 18 months of age, she lost all of her residual hearing. We received confirmation that she had no residual hearing left when she was exactly two years old. We assumed that meant that we had to leave A-V therapy and started researching alternatives. However, our A-V therapist was reluctant to have us go, saying that we were as Auditory-Verbal a family as she had ever met, and that she wanted to keep working with Rachel. She agreed to add visual and tactile cues to Rachel’s therapy. Rachel immediately took off with lipreading.
In August of 1989, our A-V therapist was talking to another A-V therapist in Canada who had a child who was also totally deaf and had gone to NYU for a cochlear implant. At the time, the CI in young children was still in clinical trials, and only a handful of children in the U.S. had been implanted. That the CI was actually an option for Rachel at that time came as a big surprise to us. The professionals in Boston had told us that it was for the future, that it didn’t work well, and that users heard only static. We opted to travel to NYU in October and spent 3 days meeting with the CI team and having Rachel undergo evaluations. They were very impressed with the language she had gotten through lipreading, identified her as a candidate, and scheduled surgery for two months later.
We returned home to Boston and had to have Rachel undergo some additional audiological testing there plus see our local ENT. When we told them we were getting her a CI, we were taken aback at the criticism we received. My favorite was an audiologist who told us that we shouldn’t do it because it was expensive, that the cables, which needed to be replaced every few months, were $15 a piece. Today I really have to laugh at this because cables currently cost $240 each, although are fortunately now covered by insurance. Our ENT at Boston Children’s Hospital brought in the head of ENT, who spent a half hour arguing with me about the path that we were taking for Rachel, telling me how we were harming her by not teaching her sign and also was not in favor of the CI.
From the time Rachel received her CI, we never looked back. Once Rachel got her external processor, we restarted Auditory-Verbal therapy. Now that Rachel could not only hear but hear so well compared to most profoundly deaf kids with hearing aids, we hit the ground running. Within 6 months, all of the language that she had had visually through lipreading transitioned to auditorally comprehended language. While we were still living in Boston, we went to A-V therapy twice a week for an hour, but when we moved to Atlanta it was only once a week for an hour. Rachel went weekly through 2nd grade and then every other week in third grade before “graduating.”
In those early years, we were among a very small group of families in the U.S. of children with CIs. In fact, at one point Cochlear Corporation sent a list of the first 200 children in the U.S. to all of the families, and Rachel was on that list. In 1994, Rachel was selected as the poster child for Better Hearing and Speech Month, and several articles appeared about her in our local newspapers as well as a story on our local news. While we did receive many positive comments, I was amazed at not just the negativity of a few of the responses but at their animosity. These comments included statements that our daughter would grow to hate us for the choices we had made, that she would never be a part of either the hearing or deaf world, that we were committing child abuse, that she would be suicidal by age 18 and that she should be taken away from us and raised in residential schools for the deaf because hearing parents are incapable of raising deaf children properly.
While our son was born in 1991 with normal hearing, our third child, Jessica, was born in 1995 and was totally deaf from birth. While Rachel was making excellent progress with her speech and language, she was still not caught up to her peers. At that point, we understood very well how not hearing for 2½ years affected a child’s acquisition of speech and language, and we did not want to wait until Jessica was two to give her hearing. Despite age two still being the FDA guideline, our surgeon at NYU agreed to implant Jessica at age 15 months. While we were living in Atlanta by that time, we opted to do the traveling to give Jessica hearing at such a young age. At the time, she was the youngest congenitally deaf child in the U.S. to receive a CI.
The early CI did make a huge difference for Jessica. By age 3, her receptive language was age appropriate. Jessica went to AV every other week by age 3 or 4 and graduated at age 6 because of her earlier CI with language that tested age level to two years above.
Rachel is now 20 and is a sophomore in college. She requested and received a bilateral implant in March 2004 after her first cochlear implant failed one week ago. She hears and speaks beautifully and, to this day, has never learned sign language and has no need or interest to do so. She maintains a website, www.cochlearimplantonline.com , that she initially created when she was in 8th grade. After Rachel became old enough, she became a C.I advocate.
Jessica is now almost 13. She hears incredibly well and speaks beautifully. She and Rachel have attended mainstream schools all the way through, succeeding alongside their hearing peers with the use of a portable soundfield system and, for Rachel, occasional notetakers being their only accommodations in class. Rachel graduated from our local high school with a 4.0 GPA and received her school’s Faculty Cup award at graduation. Also, despite the initial audiologist’s pronouncement that she would likely never learn to speak English well, she is also fluent in French, won her school’s foreign language award during her junior year of high school and won a statewide foreign language competition.
Mom of C.I. kids.
Part two tomorrow Rachel Speaks Out About Her C.I. Experience
A little long, but worthy reading the whole post:
When Rachel’s deafness was first diagnosed in 1989, she was only two months old. Fortunately, or so we thought at the time, the hospital that did Rachel’s ABR testing sent us to another audiologist and social worker immediately following her 2½ hours of hearing testing. However, what today sticks out in my mind is that these two professionals immediately hit us with the controversy in deaf education, which we knew nothing about at that point. The social worker told us that we could sign, speak or do both. Then, despite all the programs for deaf children in the Boston area, where we lived at the time, the only one she told us about was the Learning Center for Deaf Children, a signing school. When we returned for follow-up appointments, the audiologist called the A. G. Bell Association “a bunch of extremists” and told us that Rachel would likely never learn to speak English well.
.
I cannot imagine where my daughters would have been today had we listened to these first two professionals. Fortunately, we did not. The mother of an oral deaf child was the first parent whom I spoke to, the first one who got exactly what and how we were feeling. A month later, this family had us to their home and had another mother of an oral deaf child there as well. They spent a few hours with us, providing us with reams of information that they’d spent time in advance putting together for us. In addition, they spoke to us of the oral approach and told us why they had chosen that route and how their children were doing with it. When we got home, we did contact some parents who were using total communication, one in particular who had gotten rid of her daughter’s hearing aids and was only signing. However, we were nowhere near as impressed with this family and did not pursue their information further.
My husband and I are people to whom higher education is extremely important. We both have advanced degrees and wanted for our daughter to have all the same opportunities that we’d had. We read the statistics about reading levels of children in signing deaf schools, and we were very concerned that this was not what we wanted for our daughter. While I know that there are those in the signing deaf community who do not fit these stereotypes, these reading comprehension statistics are based on fact and not fiction, and we were not willing to take the chance.
Furthermore, neither of us nor anyone in our extended families knew sign language. Even if my husband and I learned sign, how would Rachel communicate with her grandparents, aunts, uncles and cousins? While I hear all the time about deaf children belonging and identifying with others in the deaf culture, this was not what we wanted. We had a child because we wanted to love her and raise her as part of our lives to share our knowledge and culture with. We wanted her to be fully a part of our family. For these reasons, and because we saw firsthand how well these other two oral children were doing, we opted for the oral approach.
Initially, we started with a program in Boston when Rachel was 4 months old. The program was for both parents and their babies and toddlers. We would go twice a week, Rachel made little progress that year both because of this and because, as we later found out, she was losing her residual hearing. Throughout this time, I also grew increasingly aggravated with the program director who kept questioning me, accusing me of wanting Rachel to be oral for myself and for how I thought it would look if she could not speak well. This was so far from the truth and to me, offensive. My husband and I wanted Rachel to learn to speak well so that she could have an easier time in life, so that she could communicate with everyone and not just with the small handful of people in the world who know ASL.
Our one week immersion program at the Beebe Center in Pennsylvania changed our lives. First of all, we met the warmest most caring group of professionals we had since Rachel’s deafness had first been diagnosed over a year before. Contrary to the myths we’d heard about the A-V approach, we encountered nothing but kind, gentle professionals and happy hearing and speaking deaf children. We left there invigorated with hope and infused with new ideas. Despite our optimism and efforts, though, Rachel’s auditory comprehension abilities didn’t progress. Between 10 and about 18 months of age, she lost all of her residual hearing. We received confirmation that she had no residual hearing left when she was exactly two years old. We assumed that meant that we had to leave A-V therapy and started researching alternatives. However, our A-V therapist was reluctant to have us go, saying that we were as Auditory-Verbal a family as she had ever met, and that she wanted to keep working with Rachel. She agreed to add visual and tactile cues to Rachel’s therapy. Rachel immediately took off with lipreading.
In August of 1989, our A-V therapist was talking to another A-V therapist in Canada who had a child who was also totally deaf and had gone to NYU for a cochlear implant. At the time, the CI in young children was still in clinical trials, and only a handful of children in the U.S. had been implanted. That the CI was actually an option for Rachel at that time came as a big surprise to us. The professionals in Boston had told us that it was for the future, that it didn’t work well, and that users heard only static. We opted to travel to NYU in October and spent 3 days meeting with the CI team and having Rachel undergo evaluations. They were very impressed with the language she had gotten through lipreading, identified her as a candidate, and scheduled surgery for two months later.
We returned home to Boston and had to have Rachel undergo some additional audiological testing there plus see our local ENT. When we told them we were getting her a CI, we were taken aback at the criticism we received. My favorite was an audiologist who told us that we shouldn’t do it because it was expensive, that the cables, which needed to be replaced every few months, were $15 a piece. Today I really have to laugh at this because cables currently cost $240 each, although are fortunately now covered by insurance. Our ENT at Boston Children’s Hospital brought in the head of ENT, who spent a half hour arguing with me about the path that we were taking for Rachel, telling me how we were harming her by not teaching her sign and also was not in favor of the CI.
From the time Rachel received her CI, we never looked back. Once Rachel got her external processor, we restarted Auditory-Verbal therapy. Now that Rachel could not only hear but hear so well compared to most profoundly deaf kids with hearing aids, we hit the ground running. Within 6 months, all of the language that she had had visually through lipreading transitioned to auditorally comprehended language. While we were still living in Boston, we went to A-V therapy twice a week for an hour, but when we moved to Atlanta it was only once a week for an hour. Rachel went weekly through 2nd grade and then every other week in third grade before “graduating.”
In those early years, we were among a very small group of families in the U.S. of children with CIs. In fact, at one point Cochlear Corporation sent a list of the first 200 children in the U.S. to all of the families, and Rachel was on that list. In 1994, Rachel was selected as the poster child for Better Hearing and Speech Month, and several articles appeared about her in our local newspapers as well as a story on our local news. While we did receive many positive comments, I was amazed at not just the negativity of a few of the responses but at their animosity. These comments included statements that our daughter would grow to hate us for the choices we had made, that she would never be a part of either the hearing or deaf world, that we were committing child abuse, that she would be suicidal by age 18 and that she should be taken away from us and raised in residential schools for the deaf because hearing parents are incapable of raising deaf children properly.
While our son was born in 1991 with normal hearing, our third child, Jessica, was born in 1995 and was totally deaf from birth. While Rachel was making excellent progress with her speech and language, she was still not caught up to her peers. At that point, we understood very well how not hearing for 2½ years affected a child’s acquisition of speech and language, and we did not want to wait until Jessica was two to give her hearing. Despite age two still being the FDA guideline, our surgeon at NYU agreed to implant Jessica at age 15 months. While we were living in Atlanta by that time, we opted to do the traveling to give Jessica hearing at such a young age. At the time, she was the youngest congenitally deaf child in the U.S. to receive a CI.
The early CI did make a huge difference for Jessica. By age 3, her receptive language was age appropriate. Jessica went to AV every other week by age 3 or 4 and graduated at age 6 because of her earlier CI with language that tested age level to two years above.
Rachel is now 20 and is a sophomore in college. She requested and received a bilateral implant in March 2004 after her first cochlear implant failed one week ago. She hears and speaks beautifully and, to this day, has never learned sign language and has no need or interest to do so. She maintains a website, www.cochlearimplantonline.com , that she initially created when she was in 8th grade. After Rachel became old enough, she became a C.I advocate.
Jessica is now almost 13. She hears incredibly well and speaks beautifully. She and Rachel have attended mainstream schools all the way through, succeeding alongside their hearing peers with the use of a portable soundfield system and, for Rachel, occasional notetakers being their only accommodations in class. Rachel graduated from our local high school with a 4.0 GPA and received her school’s Faculty Cup award at graduation. Also, despite the initial audiologist’s pronouncement that she would likely never learn to speak English well, she is also fluent in French, won her school’s foreign language award during her junior year of high school and won a statewide foreign language competition.
Mom of C.I. kids.
Part two tomorrow Rachel Speaks Out About Her C.I. Experience
January 15th, 2008 at 12:16 pm
Goes to show that parental involvement is critical for a child to succeed regardless of what path they opt for. It does help to have parents with higher education background as well.
January 15th, 2008 at 1:06 pm
You know what’s really jarring? It’s that this parent discovered warm, supportive, and caring parents and professionals on the AVT/oralism side, and animosity, criticism, and negative attitude on the “D”eaf side. Boy, that makes me squirm. We have such a long way to go in making all parents feel welcome and supported regardless of their communication choices. Makes you wonder who the real deficit thinkers are, doesn’t it?
January 15th, 2008 at 1:19 pm
Can we agree to leave out ‘deficit thinking’ term? Not only is it divisive, it is vague since everybody’s definition of deficit thinking varies, based on one’s experiences and cultural values.
But yes, parents find a wealth of information on C.I. and AVT and a paltry amount on ASL and Deaf Schools. It boils down to money. Deaf Community needs to reach out and educate the hearing parents the benefits of ASL.
January 15th, 2008 at 1:52 pm
Kudos to MZ for posting this and attempting to present both sides of the issue. That’s the only way we can have an honest debate.
January 15th, 2008 at 2:01 pm
There is a lot we can learn from this. The Bell agencies are well funded and can afford professional literature, skilled presenters and support staff that are tremendously persuasive as well as supportive, but the ASL agencies have only their teachers, frontline workers and the majority of the Deaf people to present the ASL side.
These exceptional parents were assisted to become highly involved, and they were convinced both by stellar examples among the people they met and the availability of help.
Fortunately, their children had what it took to succeed: besides parental involvement, they had intelligence and the opportunity to make use of what they learned in a highly supportive environment. I applaud this family; they took a calculated gamble and it worked because they had all the factors for success.
We need to be proactive in improving our presentation and professional balance and materials; and in combatting the propaganda that divides the oralist and AVT people from coming over to share with us.
I used the word *propaganda* carefully. This is what divides the hearing families from their Deaf children; splits off extended families, oral from the ASL people, and the wealthy Bell agencies from the ASL agencies.
This propaganda is causing the many Deaf people who fall through the cracks to become totally invisible. These are the people not helped by the oral/AVT philosophies, who do not have what the exceptional people did, who do not become poster children.
This is what makes my stomach churn. Applaud the exceptional, but do not forget the majority.
January 15th, 2008 at 2:10 pm
MZ, good point about not mentioning the D.T. words any more. You’re right. But still … this parent’s message was that she DID have information about ASL and Deaf Schools when she was first starting to gather information in making a decision about communication and schooling. What she said was that the ASL users and Deaf School supporters were negative and judgmental to her. They said: “Rachel should be taken away from her parents because no hearing parent knows how to raise a deaf child properly.” They told her that she would be suicidal! What a way to make a parent feel positive towards ASL and Deaf people.
When I said I squirmed, it’s because I was wondering if I have always supported parents unconditionally myself … if I was ever critical, or told parents that their child would never learn to talk … or if I ever told a parent that their child would “catch” up if he or she came to a deaf residential school and learned ASL. We supporters of bilingualism would do well to take a page from the AVT group and show parents our success stories — without putting anyone down, or destroying a parent’s hopes and dreams for their children.
January 15th, 2008 at 2:13 pm
Definitely a breakthrough in DeafRead! MZ’s thinking out of the box. Thank you MZ. Hope other bloggers/vloggers will learn from your blogging style and approach.
Thank you to the parents of Rachel for sharing with us your testimony.
January 15th, 2008 at 3:07 pm
*Smiling* Go girl, Mishka, making all of us aware of our shortcomings, especially in the Deaf Culture and how hearing people feel uncomfortable by the hostility of deaf people toward CIs. Hopefully Deaf Culture would take a moment to listen.
As I have said along, one size does not fit all and that parental involvement is often seen as the key to the children’s success in life.
January 15th, 2008 at 3:14 pm
To be fair for the Deaf Community, I’ve written a post what C.I. symbolizes to them. Maybe hearing people will understand better their reactions.
It is a difficult transition for Deaf Community.
I am still hopeful that a bridge can be built between the Deaf Community and the C.I. Community, with better understanding of both worlds. We need to do this for sake of the deaf babies and children. As they are still deaf, even though they wear C.I.s.
January 15th, 2008 at 3:32 pm
Hello,
This time I’m up to the par with this blog and get my word in earlier.
I want to share my journey with being implanted at age of 43 (5 years ago this month). Prior to being implanted, I was extremely skeptical to CI. I hated seeing poor babies being implanted. I realize right at this minute that the reason why i was so skeptical. I do not want to say that I am a “successful” oral deaf person mainly because there are high prices I was forced to pay while growing up. There is nothing easy for oral deaf individuals with profound deafness.
At age of 18 I finally learned sign language but I was not 100% immersed until I went to Gallaudet 1984-1986. I fell in love with Gallaudet because it was there where my missing puzzle fit. I became possessively strong about my Deaf identity and NO ONE is allowed to take that away from me. I suppose I became an extremist in this concept. I was totally against CI.
The earliest CI was very different from today’s CI. We were disgusted by the fact that the CI had an opening into the skull.
How did I change my mind? My high school deaf friend had gotten a CI and was describing sounds I cannot hear. I was like “hey! i want to hear sounds like that!” That was a beginning of a new journey of my life. My biggest fear was: “will I lose my deaf identity?” I realized later that i never lost my deaf identity, whew!
After I woke up from my surgery I had adverse reaction to the CI surgery. I had lost my balance and experienced horrible vertigo lasting five months. A coworker asked me if it was worth it and my reply was, “ask me a year later to see what my reply would be.” I was very discouraged by my adverse reaction to the surgery; however, as the time went on, things began to look up as i experienced wonderful sounds! I love hearing nature sounds! Birds, 17 year locust, water fall, ocean (although ocean was very loud), cats meowing, (dogs barking was annoying), sirens from afar, etc. I could go on and on with wonderful sounds.
Unfortunately, a year ago, I started having horrible vertigo episodes lasting from Jan until April. I stopped wearing my CI. I love the silence but I do MISS hearing sounds.
Bottomline of this post is that I have learned to be more understanding what a CI is all about. It is really a neat thing to have to be able to hear sounds. It is too bad that the CI surgery is so invasive and scary. There are always pros and cons with everything in our lives.
Young parents with deaf babies want their babies to have the same experiences as they do and this is entirely understandable. When I go to the CI center i often run into young families with parents signing to their CI implanted baby, I am so envious. I think it is the most wonderful thing to see hearing parents signing to their deaf babies.
There is nothing wrong with having both CI and ASL. I guess I wanted to see how we can meet half way: for skeptical deaf people and hearing parents of deaf babies. Babies with CI grow up like hearing people will always be deaf and it would be nice of they are allowed to acknowledge the fact that they are deaf. It is part of their identity whether we like it or not. We all have our identities and they are so important for our wellbeings. They probably will be better off than oral deaf kids if we think about it. Oral deaf kids who cannot hear as well as CI kids suffer somewhat worse. There will always be parents who want the best of their children. My parents wanted me to be a “hearing” child which is an impossible feat but if I had a CI as an infant then my experiences would be so different.
There is a wonderful documentary film about a deaf child wanting a CI. Please see the link:
http://www.filmakers.com/indivs/SoundFury_6.htm
There are two films: “Sound and Fury” and “Sound and Fury six years later.” These films are essential educational tools for both sides of CI camps (against and for CI).
Let this be our education instead of fighting with what is right or wrong. Lets try to face our fears and tackle them: both hearing parents and deaf people.
January 15th, 2008 at 3:35 pm
Good point. Hearing people are in unfamiliar grounds with the deaf community and when they sense their thoughts are not entirely accepted, they go ahead and find their niches, often with other hearing people for the support system.
So we have to embrace CIs… which is not easy I know.
January 15th, 2008 at 4:55 pm
Misha,
You have no idea how much this means to me, your willingness to explore into this CI controversy and staying objective. You bring hope to me as a Deaf mother with a son sporting a CI who communicates in both ASL and spoken English. You bring all the parts of the controversy together for me. I am sure it goes the same for deaf parents with CI kids and hearing parents with CI kids who use ASL or thinking about introducing ASL in their child’s life.
January 15th, 2008 at 5:26 pm
To Anna S,
It means a lot to me that you wrote this comment on Mishka Zena’s blog. Please tell us your story. It is not often to hear stories from deaf parents whose children who are also deaf and having CI too.
Especially they are learning ASL and spoken english too.
Your story will definitely build bridges.
Amy
January 15th, 2008 at 8:05 pm
Here is one question I have – You want to reach out to the parents in a positive way, and approaching them positively is certainly a much better way to go than what I dealt with years ago. However, if hearing parents do not know sign, then it will take a person who speaks as well as signs to communicate with hearing parents. I know that there are many of you who speak as well as sign, but many of those with more militant views refuse to speak. How are they going to communicate with hearing parents? I think that what this points out goes along with your whole argument, that we draw support and comfort from those with whom we can communicate.
Thus, I think that the ones advocating ASL who should start communication with parents of newly diagnosed deaf babies are the hearing parents who have chosen to include include ASL. I know that the listserv of parents of children with CIs that I am a member of is comprised of parents who have chosen all of the various communication and education options. We are all supportive of each other the majority of the time. The one thing we all share is that our kids have CIs and, therefore, we all want them to learn to hear and speak with them. However, the range is from those who are raising their kids bi-bi to those like me who are totally Auditory-Verbal.
So, CI parents are building bridges because it’s a given that we all accept and support CIs in children. I think that the future of the signing deaf community is not in rejecting CIs because they are here to stay and increasing in number but, rather, in accepting children with CIs. There are definitely some parents of children with CIs who are comfortable with their children in both worlds. A good place to start would be in welcoming these families and being supportive of their decision to implant their children.
January 15th, 2008 at 9:02 pm
I just finished reading the replies to Mishka’s latest blog post, and one in particular brought to mind another point. Many of those who communicate only or primarily using ASL have very poor English grammar and syntax. While I understand that that is related to the grammar and syntax of ASL, as a hearing parent, if I read an argument for an ASL upbringing that is full of grammatically incorrect English, I am going to be turned off because, rightly or wrongly, it says poorly educated. Whether it’s oral or written, communication with hearing parents needs to be articulate.
January 15th, 2008 at 9:06 pm
I see that there is competition among hearing parents with deaf children, seeing which child can speak, hear and function the best.
So many hearing parents feel that they need to implant their deaf child so that they can fit in the peer groups. I have had a few deaf children come up to me and ask me why they didn’t get CI simply because their friends have it. CI seems to be a fashion fad these days, I guess.
When I was growing up, we used to have fancy hearing aid holders (if you grew up in the 1960’s, you know what I mean), one of the hearing parent of a deaf child could design things on the leather hearing aid holder for the deaf child, many hearing parents would line up to place orders so that he could design a custom hearing aid holder with the child’s name on it, thus it became a competition thing, of course he made a lot of money and was smart enough to set up a home-based business doing that kind of thing.
January 15th, 2008 at 9:12 pm
Melissa,
I have to emphasize that not all ASL users have poor English skills. Some of them have poor English because they spent a lot of time in speech training while growing up and missed out a lot on education and they learned ASL at a later time. Hearing parents need to be informed of this as well as it is a misconception that ASL creates poor English skills.
January 15th, 2008 at 11:23 pm
Michele, thanks so much for making that point. It will be hard for hearing parents to believe, I am afraid, because so many mistake speaking for English language when it is only a way to express it.
Everybody, look at Michele’s comment (#17) and ponder the implications of it!
January 15th, 2008 at 11:40 pm
My son was implanted just after his second birthday, almost 14 years ago. Our family has never encountered any negativity from any culture or group. Sure there have been “doubters” along the way — but when my son’s very first word “shoe” was spoken perfectly after four months of CI use, I became confident that he would become a very successful listener/speaker.
I agree that the key is parental & family involvement, and success with an implant is neither easy nor overnight. It takes perserverance and patience. One of the more difficult goals as a parent is to guide your adolescent into self-advocacy, and let go!
At some point, Kevin may become interested in writing or speaking about his success with the CI, but for now, he is just too busy being a teenager: tournament fishing, keeping stats for his HS basketball team and driving. One of his latest interests is football and basketball commentary/broadcasting.
My attitude is live and let live, but the implant has provided my son a life in the hearing world and quite a journey for our family.
He is now looking over my shoulder and states “The hearing world? There IS no other world.” There is no other world to him anyway!
January 16th, 2008 at 1:46 am
Rachel’s mother Melissa says deaf people’s English
is “very poor” (COMMENT #15).
Discrimination!!!
January 16th, 2008 at 2:07 am
Whoa! Totally blown away by all of the AMAZING comments…Anna S…I may have made a mistake – I apologize, it was unintentional- your story is VERY important and I will help you if you ever need me. Melissa- You are so generous to be sharing your experience with a different Deaf community than what it was when Rachel was little, it must be different or we would not be able to share like we are doing…and feel comfortable in doing so.
We, as hearing parents of deaf children are willing to be a communication bridge that may be necessary in advocating for the DEAF community in the future. Melissa’s comment about English skills is not an insult…it is a potential limit that needs to be worked with to get things effectively done. Start listening to our stories, we are listening to yours. Jodi
January 16th, 2008 at 8:44 am
It does not make sense for the anti-CI deaf adults to plan and hope to enlist hearing parents of deaf infants to use ASL. The hearing parents will not choose to use a foreign language to bring up their baby!
Also, it’s not true that there aren’t easily accessible ASL resources out there. As a parents who gave birth to deaf children, I ran into it constantly. There were continual assumptions by all sorts of people that we would use sign language. We had to seek out alternatives. The typical educational setting, the average deaf school, the ordinary TOD… they all encourage ASL because they simply don’t know the potential of the cochlear implant. Fortunately, we ran into people whose kids we could meet and see talking and listening. And we chose the method that they had used so that we could use our own language with our kids and allow them to speak with our family and friends. Now we’ve seen the results– our kids have mastered English easily well before they entered preschool.
It is not discrimination to say that some people have poor grammar. It is a verifiable statement. It’s not ridicule. Parents know that our kids have to be able to function in many places where English skills are crucial, such as the workplace and higher education. If they CAN learn English easily, we have no reason to teach a foreign language to them first. Some day they can choose to learn a foreign language, spoken or otherwise. I wish all deaf adults had great English skills, and would not wish ill upon anyone. It would make their lives easier, and I’m sorry that it wasn’t easier for them, years ago. But today’s implanted child is not being forced to learn English, they simply learn it like any other child, by listening and imitating their parents.
January 16th, 2008 at 10:27 am
When I was doing my research for the article, “Twists and Turns, Journeys With Implants,” I talked with many families. I learned a lot from that experience and met some with great experiences and some with bumps along the road and some who had horrible (in their words) experiences. As a parent of three deaf and hard of hearing kids who all have a progressive pattern of loss, I also felt that it was my responsibility as a parent to explore all of the options as fully as I could.
My oldest son is a candidate for the implant and we’ve sat down to talk with him about it. Even though he is profoundly deaf without his hearing aids, he gets pretty good use out of them. He can’t use the phone by auditory means alone. Right now, he doesn’t want to pursue the implant but he hasn’t ruled it out in the future either. We’ve supported him on this. If the day comes when he says “I want an implant,” we’ll do that. He has several friends with implants and he hangs out with them on a regular basis. He also has friends who use ASL, some who sim-com and one who cues.
January 16th, 2008 at 12:51 pm
My biggest hope for the future is if the ASL Deaf and the Oral Deaf can truly become one community, with respect and appreciation for everyone. It would be a community where nobody ridicules anyone else or their decisions on how they choose to deal with their deafness. I would like to see a place where all options, methodologies and technologies can be accessed without prejudice, where all the strengths and weaknesses can be discussed openly.
This would be a place where I would feel comfortable allowing my daughter to interact without fear of her being “flamed” by anyone else who doesn’t like the implant. I know the majority of ASL Deaf would never do that, but there are a few that would. Those few interactions can ruin a relationship very quickly.
January 18th, 2008 at 12:35 pm
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