Thursday, July 19, 2007

In a response to a hearing mother of implanted children

I would like to share you my response to Amy who is a mother of two implanted sons found on John Egbert's site.

These are my opinions based on my experiences and observations as a parent of deaf children and a professional. Although the upcoming demonstration is not about cochlear implant but knowing when reading most blogs, the topics can go off a bit from the main idea. When reading this mother's comments, I was a bit sadden about her attitude toward sign language and how deaf people without implants are not perceived normal. Read on..

Same here Cy..I am usually a nice person but when reading Amy's comments I became a bit annoyed and here is why:

1. ".. those of us with deaf children of our own would perhaps have chosen to teach our children the English language starting from birth..".

Sorry Amy, chosing to teach our deaf children English as a first language is not as complete and accessible as it is when teaching ASL. Deaf babies don't usually receive a cochlear implant until the age 2 or so (average speaking) missed out the critical language learning period that they are already delayed not only in language but cognition. Even CI and hearing aids will not correct the problem. I have seen so many of them with CI coming to school with no language during preschool age but got to gradually develop a language while my deaf children, now ages 8 and 9, already have language when they attended pre-school. They are already advanced and ready to learn to read and write since they already have content knowledge.

Actually to learn a language naturally, it has to be acquired, not taught. My two deaf children whose first language is ASL were able to go through smooth transistion from L1 to L2. This theory has been supported in multiple research findings. They excel in English through reading and writing and are making great progress. Their percentile scores are 99% as indicated in the SAT. Their reading level is above grade level and writing level at par. As a teacher of the deaf, for them to acquire English starting from birth is not realistic because the communication access is not 100 percent. Babies cannot learn to read and even lipreading yet. These components have to be taught, not acquired, hence making it not natural.

2. "Signing with hearing babies, while a fun fad that the bored suburbanite mother does with her time, is not the same in any way as encouraging a deaf infant to overemphasize his or her visual sense when the auditory sense is the one which is needing stimulation".

Actually, it is not a fun fad. It is becoming popular because research shows that there is an increase of 16 points in I.Q. tests. Let me tell you that I noticed hearing children of deaf adults (CODA) tended to make advanced academic progress than children who know one language. Also why limit to one language? Cognitive thinking skills are much more advanced in bilingual children as studies have proven.

3. "Fortunately, with today’s technology, deaf children can become hearing all of their waking hours "

This is a red flag because if you took cochlear implant consultant's advice like Mary Koch who mentioned that parents who think that having their deaf children implanted mean they will be hearing are not making this choice for the right reason.

4. " The statistics show that hearing parents (who study hard) reach about a preschool level of ability in sign language. This would be terribly stunting for a deaf child, who would never be able to discuss philosophical issues that come up even in the preschool years.".

Where did you get that? This is not true at all. I have come to know hearing parents who are motivated and immersed themselves in ASL environment mastered in ASL. Even several of them became teachers of the deaf and interpreters. It is even more terribly stunting for a deaf child not to have complete access to a language, especially English that is not a visual language, so exposing them signs help them to pick up English eventually. As a teacher, I have come to known wonderful hearing parents making a great deal of effort to communicate with their deaf children that they are able to discuss philosophical issues. God bless them!

5. "Our kids talk like any other kids and frequently astound those who meet them because they can live their life just like any other kid, without concerns for translators, captioning, TTYs and all of the other things which previous generations had to worry about."

My deaf children can live their life just like any other hearing or implanted kids, too. There is no way that any implanted kids can understand 100 percent when watching TV with no captions, talking with people in a group, and on a phone. CI kids are not getting the message 100 percent like hearing kids especially when they get older as language becomes more complex. I know for sure that my deaf children get 100 percent when discussing in a group, talking on a TTY or a videophone, and watching TV with captions (captions helped them develop vocabulary and they are terrific spelling bees.)

6. "So go ahead, protest, but I guarantee if the media interviews a kid like mine, they will convince almost every TV watcher out there that organizations like AG Bell are doing a great work. You can’t fight the great progress that they are doing, or the wonderful successes of thousands of implanted kids who hear whispers and score nearly 100% in the soundboot".

Don't be so sure Amy. I also have successful deaf children who are not implanted that will convince every TV watcher out there that bilingual is doing a great work. Oh yes I can show it to the world and you can't fight that either. For implanted kids who hear whipsers, so what? It is not as important as being skilled in literacy. By the way, didn't you know that a 7 year old CI girl died last January according to CBS news article? As far as I have known, there are already 14 deaths among deaf children with implants. I don't even think it is worth the risk! I hope nothing like this will happen to your sons but you can't guarantee that it won't.

7. " can easily locate and show you studies which show the exact opposite of what you are claiming. Bilingual education results in poor literacy skills and educational levels. I have seen the listening and speaking skills of kids in BI-bi and TC programs, and there is no comparison to the language and vocabulary of orally educated kids."

I can easily show you that orally educated kids are way behiind than bilingual kids. Bilingual education results in poor literacy skills? Where do you get that? First of all, bilingual education is not common across America since most deaf education program just had a jump start and statistics are not out yet about the studies of bilingual education. However, as a teacher, I have already seen the positive results. We need to be careful to identify which program is bilingual because some of the programs actually don't meet the definition of bilingual education. For example, if you go in a classroom where a teacher is using simcom, that is not bilingual. Bilingual education has certain strategies and practices that most teachers of the deaf are not trained well. If you look at deaf ed programs, there are only two programs (as far as I know) in America providing bilingual instructional methods. Gallaudet University just started to offer bilingual training and workshops just a few years ago. This field is starting to be out in the open so we cannot jump to conclusion that it fails.

8. "I am against my sons using sign language because I am a proponent of them having the most opportunities in life. Simple as that. I don’t want them to have to be griping on some blog someday about how mean the movie industry is for not captioning, or how the doctor they chose didn’t have an interpreter worth a darn when an emergency arose."

This is really sad for you to be against your sons using sign language. You are treating this language like it is a taboo. ASL is a beautiful language and it is a terrible thing to waste. I am not against anyone who is able to speak. My daughter (who is profoundly deaf) is motivated to learn to talk with her hearing aids while my son is not. Every child is different but to snatch ASL away from them is inhumane. Like Cy, I don't know which planet you are from but there are FCC and ADA laws making communication access possible especially here in America.

9. "I know thousands of kids just like mine, who every day talk and listen and enjoy movies and phone calls and music… and were born deaf."

I know thousands if not millions of kids who don't use cochlear implant have the same opportunity to enjoy movies, phone calls and even music. It doesn't have to be a CI person to enjoy these only.

My non-implanted deaf children are leading completely normal lives too. Although they are still young, I have taught them ways to communicate with hearing people and it is not even a problem. They know that writing becomes so important to master since they will be able to order anything or even have a dialogue with people who don't know sign language. I am just grateful that there are nice open minded hearing people who want to learn sign language or who attempted to use gestures to communicate with them. Literacy, not speech, is the priority for my deaf children. Thank you for listening.

Readers, feel free to add your comments to either disagree or agree with Amy and/or me. I just want to know what you have to say about this since I am only sharing my opinions and experiences.

95 comments:

LaRonda said...

Barb,

your comments and rebuttle are profound and moving! I am wordless. i cannot think of anything more eloquent or significant to say in response to this mother. I just feel incredibly sad at her ignorance and at her narrow mind. She has been brainwashed and cannot see other possibilities. Thank goodness for people like you who have the courage to articulate the positives and successes that deaf children with supportive and open-minded parents have.

Thank you for addressing this issue, respectfully, and at length! You are our hero!

~ LaRonda

Anonymous said...

Hey Barb!

Geez! I am very, very annoyed with Amy's several comments in John Egbert's blog.

Amy posted "Fortunately, with today's technology, deaf children can become hearing all of their waking hours."

Rats!

I will NEVER, ever pretend that I am hearing! I am deaf and ME! Period.

I am very sad that Amy have taught her CI sons to be pretend that they are hearing. Her CI boys will never identify themselves for who they are.

I am very proud of you and your beautiful deaf children with many wonderful accomplishments! Your children deserve to have their wonderful Mom! Your'e my hero.

I just posted in Karen's blog, "Waiting on the world to change - a quote out of context" about the CIs.

Thumbs Up! I wanna to give you my biggest hug.

White Ghost

Aaron Valentine said...

I love you!!!! I wanna give you a big hug!

Sometimes I'm getting tired of hearing parents feeding with misleading statements about cochlear implant or oralism.

I went to oral school and I got CI when I was 8. I was told I was best lip-reading and talking except I still struggle with saying "ch" or understand the difference between i or e, etc. And I finally learned ASL when I was about age 15. I often ask myself, "Why didn't I learn this long time ago?" I really didnt understand why it was so forbidden while I was in oral school. Anyway that doesn't mean oralism is the most effective approach to teach deaf children.

That's why I support Bilingual approach in the first place.

Aaron Valentine said...

I forgot to add. I mentioned that I was told I was best lip-reading and talking. I thought it was true until I came to real world. It's almost impossible to understand by lipreading people and talking. Because they didn't understand some of what I said or I missed some words they said. It's like 30% communication accessible. I came to reality that staffs at oral school are just encouraging me with positive words to keep me working with lipreading and talking.

Of course, I was upset about it. Only few oralists are successful and other ex-oralists are often thrown out as "oral failures" in trash bin.

Davy said...

you are wonderful of balance sense with care your heart of support children need in better way.
I like you ..... Smile :)

Thank you

Davy

John Lestina --- said...

WOW! Well said! I have a friend of mine who has a good quote about CI and couldn't find it so I am waiting for her to email me then will put another comment with her quote, alright!

michele said...

Yeah, its so hard, know what is missing from the big picture?? The hearing parents of adult deaf children! Where are they that we need them to speak about their experiences and raising a deaf child. They are probably the most powerful group that the young hearing parents may listen and také their word. I want them to get united and somehow give us support. If you have a hearing parent who now acknowledges that ASL is the way to go, bring them to Deafread.

Thanks Barb for sharing this with us!

michele said...

Oh one more thing, we need to be careful not to go in an attack mode or else these young hearing parents will not také us seriously. I dont want them to stop coming to Deafread in fears that they may be bashed for their decision. So how can we make them feel welcome but at the same time, try to get through them that the methods they choose are probably not good for their deaf child.

The more hearing parents get on Deafread, the better chance of educating them. We need to think like AGB organization, how to make them feel better and to provide support and advocacy for these hearing parents. I dont see enough advocacy and support coming from the deaf community to hearing parents. This is something they desperately need and if they get it from AGB, then that is why.

NAD needs to be more proactive and reach out to hearing parents and give support/guidance/advocacy.

Is this possible, me ask you all? Think about it.

Anonymous said...

WOW! You couldn't have said it better. Thank you from all of us out there walking on EARTH ignoring the ignorants that don't know quack between deafness and their hearingness. LOL

deafk said...

Barb,

I am appreciated your rebuttal with this so called Amy...It surely gives me a new perspective on this whole situation. I can see the conflicts, she says and you say... It helps a great deal. Sometimes, you know, on a panel, it helps to see the whole issue, instead of seeing one side on either. This is exactly an example of "the panel!" Thanks for sharing this with us.

deafk

David said...

Barb,

You did a wonderful job again!! Your comment just washed away Amy's irrational and illogical response. I cannot believe she said that.

How could she offend many of us who have lived in deaf world 24 hours a day, 365 days a year and up to hundred of years. I am NOT sorry to say that she has a very serious attitude problem. It has harmed many families and their deaf children.

I have seen many of them that she endorses are in mental health and other counsellings at the expenses of AVT and oralism programs.

How could she preach false information against Bi/Bi approach.

I know Bi/Bi approach I saw is very successful and I am amazed to see Deaf children's communication. They express so naturally and make so many creative expression by comparing to deaf children with AVT. Children with AVT or oralism do not have fully developed language (naturally acquired) while Children with BiBi program have two full languages. Therefore, BiBi is far more superior than AVT and oralism not in many ways but ALL the way.

However, some people refuse to admit that for their own strange reasons.

Deafchip

Amy said...

My son really does hear well enough to catch everything said on TV. He really does catch everything his grandmother says on the phone. He hears quite well, thank you very much. Unfortunately, those who are opposed to CIs don't actually know the many, many successful users. My boys actually do not use lip reading to hear... they understand with audition. The only lip reading that goes on here is in the tub or swimming pool.

It was not confirmed what caused the girl's death last January. Actually, she was missing the appropriate vaccinations to protect against meningitis. There was a study this year which showed that deaf individuals in general have a higher meningitis risk-- implanted or not. The risk of meningitis is miniscule, even with the cochlear implant, and with the various vaccinations and knowledge of symptoms, parents can rest assured that their kids will be as safe of safer than the general population, which generally doesn't recognize the symptoms of bacterial meningitis. A life of educational and employment difficulties will never be less important than health. I do not believe that 14 children have died as a result of cochlear implants; please show your source for that. It is a very safe procedure. The risks are generally not life threatening. I have been involved with parents of kids with cochlear implants for 6 years now and, though I have seen a few kids need reimplantation due to device failure, I have never known or heard of any that have died as a direct result of cochlear implants. Since this group has 1200 parents on it, I think we'd hear about this. In fact, I'm sure the FDA would be halting production if these devices caused death. Rather, they have warned of the risks and explained how to stay up to date with immunizations and information. Much of the risk was caused by a particular manufacturer's positioner which is no longer made, so I wouldn't be surprised if the risk ends up being lower than for the general population in future years, due to vigilence of parents.

Yes, literacy is important. Being able to hear whispers is just an example of the db. levels which implanted kids can hear. My son is reading ahead of his age level. Reading levels of deaf children, particularly those who communicate primarily by signing, are very poor. This fact can be found on Gallaudet's website, and you can find many programs and teachers trying to remedy that situation. The areas of the brain used for signing are not all the same areas used for spoken/auditory language. I would also carefully like to point out that many of the deaf blogs are cases in point that literacy is a problem amongst the deaf.

Kids are usually being implanted at 12 months of age, with many identified at birth for hearing loss. My kids were implanted at 6 months and 9 months (their first side-- both are bilateral now) and so they hit the ground running with typical language development. I am a proponent of early implantation because it allows the kids to access auditory information during the most plastic time of brain development. The plasticity gradually tapers of from about age 3 to 7, so it is no wonder that kids implanted later struggle and utilize lip reading, etc.

While kids who are not implanted can be happy, they certainly can not live as easily or normally as those who hear via CIs. That's plainly true-- compare the IEP of an implanted child (mine doesn't even have one) vs. the IEP of a child who is not implanted.

I highly doubt that deaf, non-implanted children, compared to the implanted kids, will convince the general population. No one argues that bilingualism, in general, is a good thing. But for deaf children with cochlear implants like mine, signing would actually thwart their natural tendency to listen and speak, and cause overemphasis on the visual in ways that would never be remedied. I hope that my kids learn a second language soon-- perhaps spanish, French or another language of their choice. Fortunately, they will be able to do this with ease.

Anonymous said...

Way to go, Barb! I'm proud of you.
I was sad to read Amy's comments.
I grew up as an oralist and hard of hearing with a hearing aid. Wearing hearing aid and being taught to speak did npt help improve my English. My language had been taken away by the oral teachers. Books were forbidden at school until I spoke well starting at age 10. I was very, very frustrated. Thanks to my mom for providing me some comic books that helped me develope English when growing up. I learned ASL when I was 15 that was way too late and my test score after graduading from high school was shown as 4th grade average level!! I am embarrassed to say that. MOST of my oralist deaf friends have the same problems and mostly are in the 1st grade average level and have some low pay jobs. I did not pass the college level test and I was placed in some developmental classes. If I learned ASL when I was little, I would have passed the test. My son made 4.0 GPA in high school because he learned both speech and ASL since birth birth. My step deaf children learned ASL by their deaf parents since birth and they now have masters degrees. Hearing people have trouble understanding me when I speak and I avoid them unless they are willing to communicate with me by writing notes or using ASL.

Parents,
I encourage you and your deaf children to please learn ASL. So your children will not be frustratded.

Dianrez said...

To Amy of the implanted children...your comments are incredibly biased. As a deaf individual with a deaf son, and free of implants, I beg to differ with your comments.

Your children might have had substantial residual hearing in a wide range of frequencies to work so well with implants, and to hear as well as you say. If they actually do, I do not know...only have your own evaluation to go on. If they are indeed working as you say, God bless all of you.

Since you put such high value on hearing, and you confuse the use of English with the sense of hearing, I am glad that you perceive your kids to be doing so well. For a child to be happy, it is essential that the PARENT be happy also.

However, as your kids grow, be careful that you do not over-emphasize their hearing or speech skills, or confuse them that their use of language requires hearing. The danger there is that they may hit a plateau where their inherent limitation is hindering further growth, and your attitude may inadverdently instill in them a sense of failure.

Be flexible, Amy, and be open to the possibility that your kids may choose to learn sign language or be encouraged to use sign in order to grow further. Most orally raised deaf individuals eventually choose sign and to mingle with the Deaf community as equals, relaxed and accepted for themselves.

Wish for your children to be fully achieving, fully sociable and fully educated individuals, no matter how they reach that point.

Do not define their successes in terms of hearing and oral skills. Rather, define their successes in terms of being flexible, comprehensive and able to utilize all avenues of learning and communication.

Anonymous said...

Amy,

Wait until 20 years!

Been there with no ASL!

Former oralist!

Amy said...

I'm not sure if you understand cochlear implants. My boys had NO measurable hearing whatsoever at birth. My youngest son's ASSR test showed no hearing to 120 db. Elliot's ABR showed nothing to 90 db (and, probably more) when he was a baby. However, with his cochlear implants he hears in ALL the speech frequencies, and this it typical of early implanted kids. The technology has been quite good for many years now.

I have no problems with my kids learning sign language someday, though I doubt them will choose that for their second language. By the time they reach adolescence they will no longer have to worry about overemphasizing their visual sense. The key is that they do not NEED sign language, and can communicate with the culture at large.

I define success and achievement as being able to do whatever one wants to do, to choose one's educational path and professional life. Secondarily, being able to support oneself is important, without the psychological injury of having to subsist on government assistance. I would prefer that those funds go to those who truly need them... hopefully, my boys will not.

My older son's language skills are a done deal. He's got it, it's not going to evaporate. Like his grandmother who went deaf in her late teens, he will always know how to speak clearly. So I know it doesn't require hearing. However, I also know how difficult her life was... at the dinner table, on the phone, at the grocery store, and when she was raped. I know that if she was alive today, she would be very happy about her grandsons' cochlear implants.

At this point, sign language would not offer any educational advantage to a first grader who reads and hears so well. Oral education can truly be a simple bridge today, one to a life where one's hearing abilities at birth are... almost incidental. They will not be the focus of his life, nor the stumbling block to social or educational situations. His history will include receiving cochlear implants in infancy, but his entire life will be about his own interests.

Again, there is no measure of residual hearing in my boys' ears. Electrode insertion today can leave residual hearing intact, but my boys really had none. They used high powered hearing aids in infancy, but it is unlikely that they got any benefit. Their hearing is due to the electrode firing electrical impulses just like my hair cells do on a regular basis, sending this information to the auditory nerve. It replaces the missing hair cells.

John F. Egbert said...

Barb,
I really admire you for doing just good work explaining this to Amy.

It is a blessing disguise that Amy came along and have two views that people will learn more this issues with Deaf children.

Like they say on Fox News,
Fair and Balanced News
You Decide.

John F. Egbert

Anonymous said...

Dear Amy,

You remind me of my loving father. He was so articulate and used the same points you just used.

My heart is heavy because I see myself in your sons, and I can already clearly see what they will be like when they become 18. I also see my father in you.

I am what my teachers and many called an oral program success but it was not enough for me to become a complete person emotionally and spiritually. I became a whole person when I found the Deaf community and embraced ASL.

It is more than just the language acquisition. It is about accepting your child as a whole person. It is about a lifetime relationship. A deaf child never feels complete until the parents expresses love and acceptance towards the deaf part of his identity. That acceptance includes getting involved with the deaf community and learning American Sign Language. Try it-- you will be amazed.

Fortunately my father did change his views when I was a young adult and he expressed wishes that he could have done it differently. He loved the Deaf community and signing ASL. Witnessing his involvement in the Deaf community moved me deeply because it meant he loved and accepted me as a whole Deaf person.

Please read what I wrote in honor of my father with an open heart.

http://dhh-community.com/blog/?p=171

You can reach me at JulieSmario@comcast.net I would love to meet your sons.

Warmest,

Julie Rems-Smario

Deafpeace said...

See that way speech language and ASL a must have match mix put together. When I was young girl with full of ASL until they offered hearing aids with speech class trained for long time and still have alittle speech using but not use for conversation ,period. My ear accept is sound but no words and what a waste to have missed part of classes each other day. I have to catch up after school or asked someone takenote or else . One thing help deaf children speech by hearing parent or hearing brothers/sisters or hearing granparents or hearing friends that will be good enough same as for CI should take ASL with speech and training listen same time .
I am calling Amy no left children behind, I am sorry to say it but blunt experienced myself through it.

Deafpeace

Anonymous said...

Cause for concern:
A possible (but not proven) link is found
between cochlear implants and meningitis
On July 24, 2002, the U.S. Food and Drug Administration issued a notification that it had received reports of a possible link between cochlear implants and the occurrence of bacterial meningitis.

The FDA is investigating an increase in cases of meningitis among deaf people who have received cochlear implants. Some 55,000 to 60,000 implants are in use worldwide, 22,000 of them in the United States. Children account for around half of the total number of implantees.

"Besides the 22,000 Americans who have them, several hundred thousand more are considered good candidates for the implants But there is great debate among deaf people about the implants, with some questioning their effectiveness and arguing that the use of sign language is preferable because it produces a sense of community."

–Philip J. Hilts,
New York Times

According to the FDA, among those who have received implants during the past 18 years, there have been some 91 confirmed cases of meningitis worldwide, 17 of them fatal. Two well-known otolaryngologists and CI surgeons, Noel Cohen (Mendik Foundation Professor of Otolaryngology, Chairman of NYU Medical Center’s Department of Otolaryngology, and Director of its Cochlear Implantation Program) and Thomas Balkany (Director of the University of Miami Ear Institute), conducted a recent survey that puts the number of confirmed U.S. cases of implantees with meningitis at 22, and estimated 26 unconfirmed cases in Europe, for a worldwide total of 48 so far. Fourteen of the American cases had implants made by Cochlear Limited; 8 had implants from Advanced Bionics.
Between 1984 and 1999, there were only sporadic cases reported in the U.S., some years without any cases at all being reported, but since 2000, 8 have been reported.

According to Philip J. Hilts’ New York Times article (August 3), Dr. Eric Mann, who heads the FDA branch that oversees ENT devices, said "that was hard to determine whether the meningitis cases were linked to the implants. Some people with cochlear defects are susceptible to meningitis, which is a leading cause of deafness, and recurrences are not uncommon."

Even so, the FDA advised implantees to consider getting vaccinated against meningitis. In the same alert issued on July 24, it advised CI and ENT doctors to be alert for the symptoms of meningitis.

In response to the concerns raised abroad about the possible link between its Clarion HiFocus implant and meningitis, Advanced Bionics Corporation removed its HiFocus I and II models from the market in France, Germany, Japan, and Spain, and subsequently, on August 6, stopped selling Clarion implants in the U.S., although the FDA said it would allow the company to re-market the Clarion HiFocus implant without electrode positioners.

This positioner, introduced in 1999, is the part of the Clarion HiFocus model that worries some doctors. It’s used to insert the electrodes into the cochlea, and may leave gaps ("dead space") that can encourage buildup of bacteria that migrate to the fluid that coats the brain. As Hilts notes: "An infection there, by pneumococcal bacteria, is defined as meningitis."

If the symptoms (fever, lethargy, stiff neck, headache, and irritability) are correctly and quickly diagnosed, meningitis can be successfully treated with antibiotics. But if the diagnosis isn’t made early enough, it can be fatal.

"The implants are used to correct severe hearing loss, and the product, implant procedure, and follow-up treatment can cost as much as $70,000."

—Gregory J. Wilcox,
Los Angeles Daily News

Dr. Mann told Hilts that the case against the Clarion implant is "circumstantial only," and noted that there was "no direct cause and effect that we have found. And there are other possibilities."
The law firm of Lieff Cabraser Heimann & Bernstein, LLP, is representing patients who may want to bring legal action against the manufacturer. Any person, whether adult or child, who has suffered a serious infection or injury after having received a cochlear implant, may be eligible to file a claim against the manufacturer. If you believe that you or a member of your family is qualified, you can contact the law firm to discuss your legal rights at no cost or obligation. E-Mail: mail@lchb.com; Website: www.lieffcabraser.com.

Sources:

Gregory J. Wilcox, "Valencia, Calif.-Based Company’s Ear Implants May Be Tied to Meningitis, Los Angeles Daily News, August 7, 2002 (online)

Philip J. Hilts, "Drug Agency Is Studying Ear Implants’ Links to Meningitis," New York Times, August 3, 2002 (online)

FDA Website (fda.gov)

Lieff Cabraser Heimann & Bernstein, LLP Website

AP report, August 24, 2002 (online)

Fact Digger

BEG said...

As regards to her point #8!! I really wish I could talk with her, and let her know that her children could very well be (like me!) bemoaning that they did NOT get a chance to learn ASL as children. She would be confronted with a woman who would embody everything she holds out for her children -- ie, someone who can't be distinguished as deaf -- telling her directly to her face that it STILL does not work!

I simply do not get this EITHER OR business! Learning ASL does not interfere with learning English!

Argh...now I really should go track this down...

Anonymous said...

Amy,

We are confused by your posts in Barb and John Egbert's blogs.

In John Egbert's blog, you said, "I am against my sons using sign language because I am a proponent of them having the most opportunities in life."

And then....

you commented in Barb's blog, you said, "I have no problems with my kids learning sign language"

Sorry, I do not understand you at all.

White Ghost

Anonymous said...

National Institute of Health research suggests infants who communicate with sign language before they can speak learn to talk sooner and score higher on intelligence tests, when compared to their non-signing peers.

“We’re getting happier, well-adjusted, expressive children and happy parents who can talk with their babies and take the guessing game out of the first two years of life,” says Hodges, Baby Signs Institute district manager and certified Baby Signs instructor.

According to speech pathologist Anita Werner, M.S., CCC-SLP, director of Pediatric Speech and Language Specialists in Chandler, this “language-enriched environment” and the closeness between a parent and child fostered by the Baby Signs experience will contribute positively to a child’s linguistic development and academic confidence.

Some parents worry their child will be less likely to speak if they sign, but according to Werner, using signs won’t impede speech development.

According to staff, it seems the earlier infants see signs, the earlier they sign back. “I started to teach Nathaniel signs at seven months, and at eight months, he signed back, and by 12 months, he was talking, and signing five to six word sentences; it was incredible. With Molly, now two, we started signing with her when she was born. She signed back ‘milk’ at four months.”

So no matter how much hearing a kid may have, the use of signs with hearing babies have shown a great deal of benefit where babies have the opportunity to express their words through signs. Isn't it marvelous? So why wait?

Link: http://thechandlertimes.com/sept06-feature2.asp

Fact Digger

Anonymous said...

Response to Amy

For some reason, your son’s inside of ear is screwed up and not hear at all by CI then you will be so damn freak out that your son couldn't hear from you or anyone anymore. It is more safe for you both learn ASL before it is too late. Think twice!

Long Live ASL

Davy said...

Yea I notice the white Ghost said
about Barb and John E. blog. post from that AMY is really confuse.
yes me too I saw that .... White Ghost you got it the right hard target on Amy does not know what she doing. I feel sorry for her.

way a go White Ghost .... you betcha. whooooo wheeeee you got it.
It me laugh Ha!

Davy

Anonymous said...

Amy,

I can hardly put up with reading all of your comments. You've proved to everyone that you're arrogant and that you think you know what's best for all children who are deaf.

I pity your boys for having you, unless you change your mind about bilingualism. God bless them both.

Best Wishes,
Anonymous

Cy said...

Hey Barb,

Was surprised to find my name in your post! Yeah, was really annoyed with Amy.

I forgot to comment on that one where she said with CI, her son is hearing 24/7. What a misconception! People with CI doesn't hear everything with CI. They can't identify the source of the noise. There are certain sounds or frequencies that they still can't hear. CI does not replace the hairs on the cochlea whose job is to transmit all sounds coming in onto the brain.

Good rebuttal, Barb. I don't think Amy will realize the magnitude of her actions and promotion of CI and spoken English upon her son until her son is grown.

I get mostly annoyed when she said her son could discuss philosophy in preschool. Eh? Hello?? What did she take us for? Apparently she thought we would be too stupid not to know preschool children do not discuss philosophy in preschool.

I assume she meant logical skills.

It is clever of the CI industry not to keep track of their CI receipents by research or statistics. They know the results vary wildly and are highly unreliable.

CAEBER is still in its infancy which is why so many parents are unaware of the promisingly successful results of BiBi education. However, I doubt organizations like AGBAD would embrace positive results from CAEBER. Organizations like AGBAD will continue to rigorously promote oralism, CI, and avoid ASL like the plague.

Barb, do you think we will be able to unite and fight against them? Seems NAD is not doing much and is focusing elsewhere, and at this moment, on the Olympics.

Jeannette said...

Another problem with total reliance on the CI, is that it is total reliance on a piece of technology. It could fail at any time. For someone who is bilingual, if there is ever a problem with the CI, they aren't stuck without language. That's something also to consider when you eliminate ASL from a deaf person's toolbox.

Not only that, having a CI doesn't eliminate deafness, giving a kid ASL not only gives access to another language, but a whole community that provide encouragement and support for the kid's unique life experience. As a hearing parent, no matter how much ASL I learn, I will never know what it's like to be deaf. Providing an open door now for my kid to have deaf friends (even though they are only 2 and think chasing each other in circles is the great thing in the world), I think will greatly enrich his life's experience.

"NAD needs to be more proactive and reach out to hearing parents and give support/guidance/advocacy."
I'd love this! As a hearing parent, I'm only vaguely aware of the NAD and have no idea what it's all about or what benefit it could provide for my son.

I've heard presentations from Gallaudet about the bi-bi education, and frankly, I was really impressed. My 2yo just got an implant a few weeks ago, but he is also a fantastic signer. He's spent the first 2 years of his life absorbing language CONTENT because of sign. He's profoundly deaf, but before his second bday he knew most of his letters, his colors, a gagillion animals, he could make choices about what he wanted to do, to eat, to wear because ASL. We got the CI because we thought it would be the most helpful technology for him to learn English, as well as sign. *shrug* There's arguments on both sides, and I won't deny that has been a really tortuous decision.

I just don't understand what there is to be afraid of with ASL. He's deaf; visual language is his strength. What's the big deal?!

Amy said...

White Ghost: I do not want my children using sign language right now. They are welcomed to choose any 2nd language later in life.

The accusations of arrogance, the pity and the accusations are all typical deaf culture responses to the successes of implanted kids. Sorry Cy, but my kids can identify the source of sound (localization) due to their bilateral implants and the head shadow effect. They do hear whenever their CIs are on, as do so many other lucky kids.

The CI industry does keep track of statistics. They are easy to find on each of the manufacturers' websites. Results do not vary "wildly" within appropriate implantation parameters.

My kids are not a part of the culture that you are a part of. They are happy members of our culture. This seems to irritate adults who want the kids to be just like them. How about just being happy for the kids who are able to hear? Many of today's first implanted AV kids are graduating high school and college, and they are very happy people with good relationships with their parents. I know several personally, and their successes include foreign languages, journalism, etc. Here is one I don't know:

http://www.news.com.au/heraldsun/story/0,21985,21913519-2862,00.html

Anonymous said...

Barb,

I read your recent comments toward another individual "Amy" and enjoyed your insights as well as her point-of-view. However, I'm commenting to clarify the CBS link you've included...when I opened it up, I didn't get the girl's death article, but simply the CI debate. Can you send me a link to that particular article?? I'm curious about it! :D

Josh said...

oops! forgot to leave my info! It's Josh and you can catch me at wanbcwboy@aol.com for that article I requested via CBS.

-Thx

Anonymous said...

Amy --

I still do not understand what you are saying....you still are confusing to all of us about the "choice and against" sign language issue.

You stated that you are against your sons learning sign language in John Egbert's blog.

Later on Barb's blog you stated that "I have no problems with my kids learning sign language someday, though I doubt them will choose that for their second language."

And...now you stated that "your kids are welcomed to choose any 2nd language later in life."

Boom.....I do not get it......confusing, confusing to all of us what you said.....

White Ghost

Amy said...

It's really simple, White Ghost. I do not prefer them using sign NOW because they will overemphasize their visual sense and change the neural pathways in the brain in a way that I do not want to happen (we'd prefer all the 5 senses to have their appropriate function). In the FUTURE, they may learn sign if they so choose. Not now, perhaps later. In the same way that they may choose French in high school, some schools are offering sign language coursework. At that point it will be up to them. Again-- they don't use it now, they may use it in adolescence or later. Who knows. If they had the opportunity right now to learn a second language, it would have to be a spoken language. Of course, my 6 year old has picked up some Spanish from Dora and also from his older brothers. I wish I knew more French, myself, and we do discuss Latin origins in our home.

I'm not sure if you think I'm being tricky, but I can attest to the fact that this has always been our belief. It is not meant to be a comment upon the lives of other deaf adults who lived before the advent of the CI, or who were educated either orally years ago or with ASL or any combination. Today there is a whole NEW generation with completely different equipment and opportunities, and unless the paradigm shift is acccepted by more of the deaf culture they will find themselves considered more and more with distrust. As long as they know that and still want to do their thing (like protesting AG Bell and alienating parents by name calling), it's a free country. No parent is asking a prelingually deaf adult to get implanted; we just want the truth to be known regarding the successes of our kids .

Trying the link again-- I don't think it all went through:

http://www.news.com.au/heraldsun/story
/0,21985,21913519-2862,00.html

Anonymous said...

Just alerted to Barb to change the correct link to CBS article about the 7 year old girl

CBS article


"Doctors said bacterial meningitis is not contagious. They believe it may have been caused by Katie's cochlear implant. They said it could have been prevented with a vaccination.
"I had tried and they were always out," Engle said. "After going back several times, I forgot about it."

Dianrez said...

"I do not prefer them using sign NOW because they will overemphasize their visual sense and change the neural pathways in the brain in a way that I do not want to happen (we'd prefer all the 5 senses to have their appropriate function)."

Oh, Amy. That sounds suspiciously like the oral arguments my mother heard when I was a child in the 50's. Like you, my mother bought the whole oral philosophy hook, line and sinker. It also sounds like the belief of Karl Menninger of the Menninger Clinic, a prominient psychiatric hospital; he believed that deaf people had a mental defect because the large "auditory" portion of the brain is unused. There is research that suggests it is actually a language portion of the brain, and input is possible through all of the senses.

You might have bought a pseudo-scientific theory that pathological model proponents still use to support their beliefs that the CI is an adequate fix for many things. Only time will tell, and many, many guinea pig children will be involved in gathering the data. Want to bet that these researchers will be looking for data to SUPPORT their theories?

There is a lot of money riding on this because these people are well funded and foundations are more willing to support "cures" than support educational methods. Also, people are so hung up on hearing as a best input that they cannot consider any other avenue acceptable.

Not to be stubbornly Deaf, though...I feel this way because there are too many false promises, over-optimistic expectations, parental desperation, and huge amounts of money invested in the "fix it, cure it, make it disappear" approach. THERE IS NO CURE FOR DEAFNESS. Only partial remedies being hailed as miracles by overanxious parents and overeager professionals.

Now back to your statement: "overemphasize their visual sense". That made me angry. Deaf people are SEEING people. It is the most natural sense for them and vitally important to their life, survival and lifestyle. NOTHING should ever be hinted about taking away from, de-emphasizing, distracting or minimizing their visual sense. Rather, it should be maximized for the maximium possible input.

Yes, train that poor sense of hearing, implement it with bionic aids if you want, but do not make such a deal that you believe it is the child's best or most appropriate input. Gosh! It almost sounded like you were about to suggest putting a blindfold on the child in order to make him use his hearing more!

There is danger in overreliance on the child's weakest sense. Also danger in building up an imaginary hearing child in one who will never have the same hearing as other children. The psychological expectation in the child is transferred from you, and devastating results come when the crash comes: being caught up short because one did not understand a key point; being dismissed because one did not hear when others expected him to; finding that one is still at a disadvantage and will always be for the rest of life.

I know. I have been there. I am a fully functioning, employed, supporting parent of both hearing and deaf children, and I believe in taking the best of both worlds. Not in limiting children to one when adding the other would open up great vistas of social and educational support and acceptance.

Anonymous said...

Amy, I hope your child doesn't look at you in the eyes and say "Mom, why didn't you let me decide for myself"?

You commented "AB Bell is not in the business of telling parents what to do." Oh yes honey, he was so adamant that oralism be the way or the highway.

Way to go Barb :) You hit a lot of nails on the head ;)

Anonymous said...

I think sign language is too taboo to them!

Jessica said...

I think it is like telling a child to try hard to see without glasses.

From the way it sounds here from the comments, the information you are giving out has been heard many times before even before CIs became the hype. Of course that is what they will tell the parents. There is a lot of money in it. It is idealistic to try and have the child grow up as "normal" as possible. *

ASL has so much to offer! I am not saying forget about speech, no, it is good that your children can take advantage of it but let them have the advantage of learning ASL too.

Just look at our CODAs. Many grew up with ASL and it has not interfered with their speech or language at all. Teaching hearing babies signs is the hot thing now and it has many great benefits for them so why keep those benefits away from deaf babies??

Cy said...

Amy,

You sound like a walking advertisement for CI industry. Are you sure you are not their rep? Masquerading as a mother of CI children?

Many of us have CI and know how they work, and what you are trying to sell fall short.

CI children DO NOT hear normally or naturally and DO NOT locate the origin of the sounds as easily as normal kids do. For some more proficient users, perhaps it would take them a bit of time to localize the sound while the normal kids instantly localizes.

CI DOES NOT make your children hearing and never will. You will find that out when they are grown. Your older is only 6 - much too early to boast, actually.

Anonymous said...

After I learned ASL at 15 years of age, my speech improved and I was able to communicate with hearing people better. ASL helped me understand words better. Before learning ASL, my speech was not good like I said "babababababab" during the conversation and no one understood me.

David said...

Dianrez,

I am glad you brought it up. Yes many parents in 1960's had high hope for their own deaf children (AVT and oralism). Now many of children are using ASL or being isolated at home. What happened to their parents? Most of them said they wished they know sign language. They feel very bad about that. There is nothing they could do.

"REPEATED HISTORY" only ignorants make. They are in their own fantastic world and could not face reality that really harm their own children.

It is a shame that ASL and BiBi are not accepted. The world is not mature enough to embrace.

Deafchip

Anonymous said...

Amy,

CI user here...

I was implanted since the age of 3. I was forced to go through speech therapy and some sort of so called treatments in order to improve my hearing reception skills. None of these treatments did me any good, even though I can hear very, very well with the CI.

After I went through elementary and junior high, my english skills were always behind. I was stuck at 3rd and 4th grade level in reading and writing.

Finally, I learned ASL during high school and started to understand how to write in english more properly and somewhat fluently. As you can see while reading this comment, my grammar skills still aren't perfect and I still can't speak right because I cannot catch enough specific sounds coming from other people's voices.

My CI device went right into the dumpster a few years ago because I got fed up with all of the B.S. that people, like you, were trying to do to us.

Go and figure, Amy. CI does not always help. Maybe for some certain people, but CI isn't for every deaf child in this universe.

You've been brainwashed and I wouldn't feel bad for you when your sons ask you why they were implanted at a very young age when they're old enough to realize the damages that they've been put through. You will be the one to be blamed, not them.

Anonymous said...

Amy and CY,

I am a Deaf parent of a bilaterally implanted Deaf child who was implanted at 3 and then again at age 6. I feel for you and I feel for those on the opposite end. My child is able to localize sound in a split second. Amy, you are right in many ways. I would give my child bilaterals all over again. My kid communicates in ASL with me and her Deaf grandparents and speaks in English somewhat intelligibly with her younger hearing sibling. She is able to order Happy Meals at a drive through and asks for a Sprite and sometimes a juice box. She interprets for me sometimes. Shei s on grade level in all subjects. A very comfortable reader.

She attends a mainstreamed program where she is in regular education all day but has opportunities to mingle with signing peers during lunch and recess. She asked the principal to let her play with her classmates during recess ratherthan doing the recess when DHH kids areo ut to play. Yes, that was a tiny stab in my heart. But I am starting to accept the factthat she is a fully bilingual deaf child with bilateral cochlear implants who is very comfortable in both worlds. She corrects people that she is hard of hearing and not Deaf. Ouch. But look at her.... she is goingto have so much more opportunities than me. She would not have to end up getting a DHH teaching credential or getting certified by the ASLTA only because theryre only jobs that can give her a satisfactory paying job. I want her to be all she can be.

Amy, I feel for you. You havem y support while at the sametime I do feel for my Deaf counterparts. I am of several Deaf generations and of mainstreamed school upbringing. I had taste of both worlds.

I want my daughter to have the BEST of both worlds. Yes, the CI technology is amazing. It works for many, but doesnt work for some. Well . . . I wish Amy's sons the best of luck and do appreciate her bravery in sharing her strong views in DEAF blogs. Wow.

But if I wouldnt prevent my child from learning ASL. It is a beautiful language with an awesome culture. Identity, pride, and confidence comes from embracing one's deafness.

I said too much .... oops.

Good luck.

Mariel Janeway

Anonymous said...

I agree with Mariel. I am also a Deaf parent of an implanted child who is nearly 2 years old and she loves CI a lot more than hearing aids. I can see that CI does benefit her in many ways and it is an amazing technology. She is still using ASL and we'd like her to be bilingual in spoken English and ASL and participate in both hearing and deaf communities as well. I expect that my child will remain part of the Deaf community because of me and my husband. I also came from a hearing family and have been mainstreamed most of my life. I have had many challenges in the hearing world and have relied heavily on interpreters on my job.
So maybe a CI will make my child's life a little easier in the hearing society in the future but if it doesn't work, that s ok and she'll always have ASL.

I agree that it s important to use ASL with deaf babies as I can see that it has benefitted my deaf child as well as my hearing child immensely but it s up to hearing parents and a lot of them would not rather sign if CI does work for their deaf kids. It bothered me at first but later on when I realized that CI does give deaf kids access to spoken language, it s natural for hearing parents to want them to hear and speak like themselves. However, I think it s important for CI kids to know that they are always deaf with or without CI and accept who they are.

Lee said...

Amy -- I assume you are wanting your kids to be like you, instead of your acceptance the fact that they have broken ears in the first place that cannot be repair 100% like yours and the "normal" populance.

Realistically, they'll never be like you. So you're molding them to be "normal" which they'll -NEVER- be on the par with for the rest of their life. Good chances are they will be having difficulty to satisfy -YOUR- measurement of what's good and what's not with the current attitude you have at this point. Ill put it this way, you do not know what it is like to be deaf and never will, perhaps.

I know this from experience all too well. However, Im quite sure your intention for your kids are good. I admire your intentions, though I do feel the price is too high.

--Lee Wingfield

Barb DiGi said...

Dear Commenters,

Thank you very much for presenting your views in a civilized way. This is a great discussion moving us in a direction of a healthy discourse. Unfortuntely, I have to delete a few comments that are considered inappropriate and please refrain from the use of profanity language.

The bottom line of the discussion is that most of us agree that it is healthy for deaf children to be immersed in ASL environment where they are able to identify themselves as "deaf" and have opportunities to interact with Deaf adults and ASL users. We all care for deaf children with or without CI to thrive successfully. Amy, I hope this discourse will make you think twice about the needs of your deaf children. Good luck!

IamMine said...

Hi Amy,

I want to thank you for staying with us with your strong views so that some of us can understand where you are coming from. I hope you will continue to come and share when you can.

I am not questioning your love for your deaf children - it is very clear that you do! I hope you have listened with open eyes and heart.

I am deaf.

I am a CI user.

I am not culturally deaf.

I use ASL.

I mainstreamed all my life.

I married a hearing man.

I have four hearing children.

I interact with hearing people everyday and work with hearing people.

I am a programmer.

CI does NOT make me a hearing person. It’s just a tool.

Now…ASL does NOT isolate a person like you think it does. That’s stereotyping. Nor does ASL hurt a deaf child’s ability to write English properly – or even speaking! It’s the education system that has hurt many for years. We need more support in this area to help ensure that no more deaf children will go through the same routine most of us did.

There’s something that you don’t understand about deaf people. There’s this gut feeling (for lack of better word) that you know there’s something in common you share with the deaf community. You get drawn to them even if you are an oralist, CI user, or other form of communication modes.

We are not isolated like many seem to think so. Many of us do interact with the hearing society.

We grew up with the system and lived to see the results so that’s why you are being given a hard time, Amy. Ask almost anyone here and they’d tell you that there was always a star student or two out of classes to show hopeful parents that their deaf children would succeed like them if they joined our programs. Those “star” students, of course, are the ones who can hear and speak very well. Or speaking and lip-reading.

We ALWAYS hear something like “but technology has improved and it works!!” all the way back to hearing aid days. CI is better, yes, but it’s just that – tools. See why many deaf people are wary of this? Why DO they have to go that way? They feel fine going about their normal lives without those outer tools on them.

ASL is not something that is “needed” – it is something that is part of who they are. Whether they are able to hear, speak or use it with the hearing society. This is something that you wouldn’t understand Amy.

That’s why many feels hurt when you said it would thwart their ability to listen and talk with ASL “in the way”.

This was going off the point – the discussion was that why couldn’t deaf babies learn sign language while hearing babies could?

It’s NOT for bored mothers – those mothers want to KNOW what their babies are saying when their vocals haven’t been fully developed to respond. The same is true of deaf babies, but they are held back so that they would learn to hear and speak.

I hope you will continue to come back from time to time, Amy. It’s very important that you show us what your views are as a hearing parent and represent the parents of CI children.

Anonymous said...

IamMine!

Beautifully said!

Your message is really a powerful! Send a message to the World and we heard you.

ILY!

White Ghost

Marijka said...

I am also the parent of a deaf child with bilateral cochlear implants. I appreciate your comments, IamMine. There is one that I would like to address:

"Ask almost anyone here and they’d tell you that there was always a star student or two out of classes to show hopeful parents that their deaf children would succeed like them if they joined our programs. Those “star” students, of course, are the ones who can hear and speak very well. Or speaking and lip-reading."

I think the operative word, from my perspective, is "around here" Ask anyone "around here". Go out of this community and that no longer holds true. While what you say may have been true 10 years ago, the likelihood of success in learning to listen, speak, and have excellent spoken language for a child that gets a cochlear implant in this day and age young is very high. There are no longer just a handful of success stories, but many -- a high proportion of children who get cochlear implants early will do very well.

My son's deafness was discovered when he was 14 months old, and he started out with sign language. He got his first cochlear implant when he was 4 years old (and second at age 8). He is 10 now and as articulate as any 10-year-old, can read on/above grade level and uses good grammar. He really does not read lips any better than any hearing person because he doesn't have to.

I bet you are wondering if he still signs. Yes and no. When his CI processors are off, we still sign (like when he is going to bed or has just woken up.) He stopped signing on his own, and while he can understand a bit receptively, he never, ever signs expressively. He just speaks. Presumably, it is more convenient for him, and what would be the point -- his voice still works even when his CIs are off and so do my ears. He's forgotten a lot of signs receptively, and I have to fingerspell for him. The other day he told me, "Mom -- you know more sign language than I do." I think he has a positive attitude towards sign, but sees little need for it.

As for myself, I am glad to have had exposure to ASL and Deaf culture, but if I had a "do-over," I would have gotten cochlear implants for my son when he was younger. It would have been easier that way, and he would not have had so much catching up to do in learning spoken English. I might not have learned to sign. From what I have seen, I am not sure it would have been necessary.

Mariel and Anonymous Deaf Parent -- of course it makes sense for your children to be raised bilingually, and I have no doubt that it can work. Among our family, we do not have native ASL signers. Adopting the language would be no different from adopting any other spoken language that we are not fluent in. It would be artificial.

Jean Boutcher said...

Amy writes: "to teach our children the English language starting from birth.."

"To teach from birth"? In my opinion, to didactically teach from birth is not a normal process for a baby for learning, Amy. It is like that a parent breathes down the baby's neck or hold him "prisoner". It deprives him of a normal babyhood as well as of the opportunity to breathe freely. The baby learns best if on his own as he journeys to observe what is around his own self as well as around the world. The journey helps him develop multiple intelligences in a most natural manner. As a recent study has denoted, actually, babies are much smarter than their parents think.

Did your parent(s) "teach you from birth"? If not, why treat your baby differently? All the parent does is to expose her conversations as naturally as possible. The baby, be he deaf or hearing, picks up a language through daily exposure. Again, without being didactic, the parent would tell, say, an Aesopic fable at bedtime. Facial expressions (equivalent of intonations) help instill critical thinking and imagination into the child. The parent would use a question mark, "The fox's fault? The shepherd boy's fault? That would make the child curious and think. If the child admires the parent, he would emulate the parent's activities like writing letters, reading the newspaper or a book.

Speaking of cochlear implant, I feel sorry for the child because the parent would falsely rejoice to a reporter that CI helps restore his son's hearing: "He can hear a dog bark." Amy, being able to hear a dog bark is not the same as being able to understand a spoken conversation. The implanted child may understand and be understood by his family and a therapist, but he may not necessarily understand or be understood by strangers like a salesclerk at McDonald's where he orders a cone of frozen ice cream. He would have to either write on paper or gesture. I know that parents ask doctors or AGB Association for the Deaf for help. What parents do not know is that some of them are on Cochlear Implant Corporate's payroll -- between $45,000 and $65,000 a year! That is why doctors push parents to implant their deaf children. Visit Gallaudet University, the world's onliest liberal arts college for the deaf, and talk with deaf professors and students.

Dr. Mervin D. Garretson, a deaf who is a former special vice presdient to a university presisident, said in 1976 that children receive 90% of education from home and 10% from school. To look back, he is absolutely correct. My deaf parents never taught ASL, English, Latin, and French to me. It was I who picked them up gradually as I was daily exposed to their activities. (Yes, I have been profoundly deaf since birth.) My hearing nephew picked up ASL from his deaf mother and English from his hearing father. He had never been taught. Didactically teaching "from birth" would burn out a baby, and, in turn, the baby would find his parent(s) to be a pain in the neck down the road!

Jean Boutcher said...

CY said... "Amy,

You sound like a walking advertisement for CI industry. Are you sure you are not their rep? Masquerading as a mother of CI children?"

Cy, I agree. CI Corporate has
some role models on their
payroll.

CI is good for the late-
deafened.

Anonymous said...

Wow... what a wonderful discussion. I would like to point out that Amy has said she is unwilling or thinks she is unable to learn ASL well enough to communicate with her kids. All of you Deaf folks have to give her a pat on the back for admitting that. You all know there are too many deaf children of hearing parents who are using ASL while their parents refuse to learn. Therefore, these children are are the ones who are behind in school and life in general. These, Amy, are the children that you have seen that you are comparing all Deaf people to. There are so many well educated ASL users it is unfair to blame ASL for the problems that you have pointed out. Those problems are due to parents' lack of knowledge or maybe they just plain don't care!

In Amy's case, I would say maybe she has chosen the best route for her family. It is better to admit you cannot learn ASL well enough to communicate with your boys than to leave them isolated. However, It is such a shame to ban ASL altogether.

As a third generation Deaf person I am quite lucky to have always communicated via ASL. I have never felt that my life was limited. I have always been quite comfortable in my own skin. It saddens me that you think your boys hearing measures their quality of life. Allow them to create their own paths.

Marijka said...

Jean B said,

"I know that parents ask doctors or AGB Association for the Deaf for help. What parents do not know is that some of them are on Cochlear Implant Corporate's payroll -- between $45,000 and $65,000 a year! That is why doctors push parents to implant their deaf children"

Maybe you heard that somewhere on a Deaf blog or listserve, or maybe in the rumor mill, but actually, cochlear implant surgery is considered by the accounting departments of many hospitals a "loss leader" meaning they lose (a lot of) money on every single operation they do. It is because the device itself is expensive (around $30,000), not because the procedure is particularly difficult. The insurance companies don't reimburse the hospitals adequately. The hospitals break even on other types of procedures having nothing to do with hearing. But as a consequence of the cost of implants, cochlear implant departments in hospitals struggle to make ends meet because the hospital admins do not give them resources (staff, space) because they don't make any money for the hospital! The reason the surgeons do it anyway is because they see children benefiting from it -- getting more options and choices in life about who they can communicate with and how.

However, it is true that the cochlear implant manufacturers (Cochlear Corporation, MedEl, and Advanced Bionics) do support AG Bell financially. This is not some kind of a shady deal, but clearly stated on the program of every conference AG Bell puts on, and even monthly email newsletters from AG Bell contain an acknowledgment (this one just came yesterday): "AG Bell thanks Cochlear Americas for sponsoring this edition of AG Bell Update." (This was at the very top of the email in boldface font.)

Jean also said,

""To teach from birth"? In my opinion, to didactically teach from birth is not a normal process for a baby for learning, Amy."

But if the option is to "communicate" in a language a parent doesn't know him or herself, is that a better option? That is the situation hearing parents with no prior exposure to ASL find themselves in. (Please, please don't tell me I must say goodbye and hand my child over to the Deaf community.)

To me, one of the most difficult things about finding out that my child was deaf was being immediately plunged into a controversy about how to communicate with him. No matter what choice I made, there was some passionate "advocate" telling me I was a bad parent and I was doing the wrong thing. I found myself between a rock and a hard place.

IamMine said...

Hi, Marijka!

This is the kind of dialog I was waiting for – I knew there were many parents of CI children with their successful usage with their CIs.

I am glad to see us talking about this in a civil manner and learn from each other.

Okay, your son does not see the need of using sign language because no one around him knows it. He is clearly comfortable communicating with hearing people with ease.

My point is that if he was exposed to the deaf community – he would be more likely to be drawn to them and use more ASL around them. He can be immersed with both worlds. He is always welcomed to the deaf community.

Have you considered bringing him to deaf events to make deaf friends? There is no need of fear that he would or might reject you or the hearing society he is part of.

He may decide he does not want to be part of the deaf community – heck, I do know a few deaf friends who want nothing to do with the deaf community and they are not even implanted at all. But the majority does.

I didn’t even really use sign language with some of my family members because they DON’T know it.

I’m just wondering what the harm in teaching deaf babies sign language is. Why are parents so hesitant with that for their deaf babies?

As for getting out of the community to find out about the CI children – I’m not quite sure what you really mean?

I spoke with a friend who has a 5 years old deaf son in a class with half of implanted children with various results. The system is still pretty much the same as it was 10 years ago.

Speech and auditory is heavily emphasized in order to be “successful” and “productive” in the “real” world. This still carries oppression on some deaf children that they can’t do this or that because they aren’t doing well – by hearing and speaking – as opposed to their ability to writing and reading comprehension. And for using ASL.

We’re becoming overwhelming outnumbered and it does feel like to me that we are in threat of losing ASL as our precious language. Seems like no one wants to help us keeping this alive by telling parents to keep teaching their children ASL and I would LOVE for the Deaf teachers to be teaching different subjects in ASL in PUBLIC schools so that visual learners would benefit from it - not just teaching ASL itself.

My hearing daughter is a strong visual learner and she understands the concepts much better when I explain to her in ASL she is struggling with.

I hope this helped you understand where I’m coming from.

Marijka said...

IamMine -- I too enjoy our conversation and its civility and information sharing. It definitely helps me understand where you are coming from.

You said,

"There is no need of fear that he would or might reject you or the hearing society he is part of."

That is not what I am afraid of -- I am more afraid of him being rejected by the Deaf community because of his implants and the fact that he does not sign. I think he would be isolated in such a setting and ASL users who are deaf would not be able to talk to him. No? Maybe when he is older.

I have taken him to some events put on by our local AG Bell chapter. There is a mentorship program with oral deaf adults. He enjoyed the activity, but when I've tried to get him to go again, he didn't want to. One problem he had was some (but not all) of the mentors had speech that he found difficult to understand (the children in the program all spoke clearly, however -- the impact of technology.) But it just wasn't his thing, I guess.

You also said,
"I spoke with a friend who has a 5 years old deaf son in a class with half of implanted children with various results."

A snapshot of my son at age 5 may have led one to assume he was unsuccessful, but after only a year of implant use (he got it at 4), the progress he had made was phenomenal, and by the time he was 7 or 8, he was caught up in spoken English language and had very clear speech. So, my question would be, are the kids in your friend's class making progress? And how long have they had their implants? Do they have good family support? The other point is that so many deaf children with CIs today do not attend special classes. They are already caught up by age 5 and in regular preschools and kindergartens. The kids still in the special schools, therefore, are the fraction who need to be there. Many deaf children with CIs never even go to special schools. So it may not be reasonable to assume from what is going on in a school, that that is a picture of kids with implants in general at age 5. In fact, many auditory-oral deaf schools today don't even go beyond kindergarten or are cutting back on older grade classes because there are no children to go into them. The children are ready to mainstream out by early elementary if not sooner.

I don't think all hearing parents are necessarily hesitant about sign language. I think that a lot start out with it, but then find it's not really necessary. There are some who are concerned anything visual could interfere with learning to listen. Having seen in my own son's case that it did not, I don't have that fear, but I do worry that trying to do it all and do it all well is very hard for a parent of a little one.

Another thing I learned -- I was told an implant would not work for my son because he is such a visual learner. Well, the latter part is true and he notices things visually (symmetries, reflections) that no one else ever would. However, what this advice giver (speech pathologist) did not take into consideration is that given the opportunity to hear well, my son could be a good auditory learner as well! Visual/Auditory: it doesn't have to be an either/or thing! He really is a great auditory learner, and his regular mainstream classroom teachers have commented on this to me many times.

Do you know hearing babies from hearing families that know a lot of signs and use ASL? Most of the families I've met have less than a dozen signs they use with their babies and most of those they make wrong! :-)

IamMine said...

Hello again, Marijka!

That is something what I (and I don’t know if this is also true for most of us in the Deaf Community) kind of fear – that the deaf children with CI are not using ASL that is natural for us and part of us. It is something that ‘clicks’ with us. Forgive me, Deaf friends, for poor wording if that’s the case!

As you know, most just don’t like to be perceived as something that needed to be medically fixed – that they are beautiful the way they are with no tools on them. And that we are equal to hearing people and are as productive and successful in life.

Instead, many look down on us. Why is that? Many ask that. Is it so god-awful?

Parents of CI children want to give them opportunities. So do we – in the natural way. :-)

We just don’t have the financial support like AGB does.

We want to work with the parents of deaf children – not taking them away from them. We want the same opportunities that the speech therapists get by working with the parents.

Your son would NOT be rejected by the Deaf Community at all. I hope you will expose him so he’d know there are deaf people like him, just that he has the tools to communicate with the hearing people in a different way. He may still identify himself differently because of his CIs. I think he’d still find that he has something in common with them and wants to interact with them. And learn from them, as well as about himself.

About the hearing families learning the wrong signs with their hearing babies…ha. Yes, I even see that with my own family members with their children! Of course, I have this urge to correct them and I do! :-D

Anonymous said...

Marijka --

As a parent, it is our responsibility to reach our children the values of the deaf culture and community. Whether your son signs or not, the deaf community will not reject you and your son.

There are so many deaf communities and organizations you can make the choice.

We have oral, HoH, deaf, latened deaf, hearing loss organizations in this country.

National Assoication for the Deaf have the list of the deaf organizations around the USA in their website.

Hope it helps.

White Ghost

Amy said...

For those who are comparing AV therapy with oral methodologies from the 50s and 60s, I wanted to clarify that AV did not exist at that time, and is quite different in approach. In fact, regarding natural language acquisition, that is exactly what AV works on. "Teach" was not the correct terminology if you are picturing me sitting with my child using flashcards or at a desk with a ruler to rap his fingers No, by "teach" I mean pass along language like every other parent teaches their child language. AV believes that parents are the best teachers of language, and helps parents highlight "motherese" and the other ways to develop vocabulary and grammar. There has not been an intense difficult process, actually. My 6 year old graduated at age 3-- yes, his language had been caught up for some time by then and we no longer needed any therapy except for some brief work this winter on his new CI (he was bilaterally implanted late because they were not doing 2nd implants at the time he was first implanted, at 9 months ol).

I don't know how many times I need to say it, but cochlear implants WORK today, work so well that my children function as hearing all day long (as do thousands of other kids), so language acquisition has been very normal. Yes, we all use our vision in daily life and no one suggests we ditch gestures or normal body language, but we are emphasizing oral language to make up for the period of months in which my sons were not hearing. Overemphasizing their visual sense would change the pathways, as evidenced by MRIs of the brains of deaf and hearing individuals and also those who are implanted (see the research of Anu Sharma).

Why would I choose to utilize and discuss complex concepts with my child in a language completely foreign to me? In the same way that a deaf, ASL using parent would never choose to try to communicate in speech if they could not and had not, we will not use ASL to communicate with our boys. The research I refer to regarding audition and neural pathways is real, and there is ongoing research about the plasticity of the brain and the optimal time for learning speech. The only really bilingual kids are those raised by deaf adults, and I can agree that those kids whose parents are fluent in ASL, with early implantation, can call both ASL and speech their native languages.

I do not "look down on" deaf adults who use ASL, and I can completely see and understand why they would choose it. What I do not agree with is their insistence that today's babies and children ought to do just as they did. We are not oppressing our kids or forcing them to utilize audition and speech-- they actually find it quite easy... really. It is sad to me that some deaf adults continually criticize parents for wanting to be able to communiate easily with their kids, or for wanting their kids to communicate easily with the general population (including their teachers and classmates). I've been called evil, called all sorts of names since I started paying attention to deaf blogs a couple of months ago... parents get called murderers and other nasty things just for their choices. I refuse to name call and this is probably my last post because the rude comments are pretty hard to listen to over and over.

The choices we made are not necessarily the ones deaf adults with deaf children would make, and naturally so. I do know some who have implanted their kids in the quest to offer them bilingualism, but to offer MY kid bilingualism when I am 38 and never learned ASL... well, it's counterintuitive. ASL is not some magical language that one automatically has a heritage of by virtue of one's birth as a deaf person. It may feel like that... in the same way that I feel strongly about my religious preferences. But if I had been raised in another family in another country, I would probably have another religion. My son easily mastered speech and would have no real reason to prefer ASL any more than he would prefer Hinduism or Chinese. Like the adopted child from another country, he will be welcomed to visit and explore someday, if he really wants to. But if the country of origin (or, in this case, people with a similar physical condition) rejects him for moving away, it will certainly be alienating. This is why I doubt he'll choose ASL for a future 2nd language. But I guess we'll see!

IamMine said...

Amy,

I'm sorry you had to endure such nasty comments, but we are having a wonderful dialog here!

I really hope you will look past those nasty comments - it comes from life experience and education.

We grew up with some oppression and being told we were not good enough.

So, please don't stop coming here!

I have learned so much from you, Amy.

It DOES hurt me that ASL is not a factor in your child's life and I do BELIEVE it's the parents' decisions.

I know I've been blasted for this, even though I fully support the Bilingual Education for deaf children.

I do wish all deaf children get exposed to ASL and being part of the Deaf Community - if given the opportunity.

So, don't please don't carry hard feelings towards us.

We also have been through a lot! :)

If you were my next door neighbor, Amy, I certainly would hope you wouldn't mind ASL tutoring from me! :D

And rocking out to music with your sons!

I grew up loving vibrations in music and there are some deaf people who really do enjoy music this way! :D

Anyway...I'd better sign off, too. But I do hope you will stay around with us!

Anonymous said...

Amy, like it or not this is a healthy discussion. When both sides stop being so defensive maybe we can find some common ground.

C said...

Well, This Amy mom of two CI implanted son is just being smug.
She failed to see the big picture. Time and time again, it's been shown that CI does not make one "hearing". I wouldn't be suprised if her sons grew up and choose ASL and deaf culture. This will unfortuntely bring heartache for her because of her one sided mind.

Barb, you made good rebuttals.

C said...

I'm not against CI for people who have made decisions on their own to get themselves implanted.

I applaud parents who include ASL for their CI kids. Being HOH (I know I can't really compare myself with CI impantees) however, I get along in the hearing world flawlessly most of the time. I remember my hearing friends telling me if I went to a residental school, I'll loose my speaking ability. They didn't know what they are talking about, really. To this day, I still have it and it's gotten better over the years. So..I'm thinking, how can ASL interfere with CI's ability to continute to pick up sounds and to have excellent speech? It's a myth.

There was one article I read a while back and I can't seem to remember where I read it, but...this person was born hearing. Then, this person lost her hearing when she was in her teen. She decided to get CI in both ears and said that it is not the same as normal hearing. It's different. Sounds are coming from the whole head rather than from the ear to the brain. She would know...she used to hear normally before she became deaf. Based on that,I've concluded that it may be a good tool for those who want it but it does not restore hearing normally, ERGO, CI's are not on par with other hearing people. Maybe someday the technology will get better and that "normal hearing" will be achieved.

Marijka said...

C:
I too do not have an implant, so can no know what it sounds like. My son has two. However, I have plenty of late-deafened adult friends (OK, to be truthful, by plenty I mean 5 :-) and most of them say they hear "like they remember" before losing their hearing. Here is one perspective by a late-deafened adult (not someone I know personally):
http://www.esquire.com/dont-miss/wifl/regainhearing0807

But for a child who has never heard before, why would this matter if it's not exactly the same? If they have nothing to compare it to, I mean? As long as they can hear and understand speech clearly, why do you require that it sound like "real hearing?" My son can detect subtleties in speech, like accents and even mannerisms or affectations, which astounds me. So even if it sounds totally-far-out-different from natural hearing, somehow the information is getting across to him.

And if we waited until he could make the decision for himself, he could not have learned to speak, I am sure of it. His hearing loss was too profound. He was never HOH. Earlier is better when it comes to cochlear implants and children.

Marijka said...

Anonymous White Ghost: Thanks for your suggestions. My son does have many opportunities to meet deaf people who use cochlear implants. He knows a bunch of children as well as adults (my late-deafened adult friends) and others who attend our local implant club meetings. True, most of his interactions with deaf people are with people who have implants. But maybe this is the future? Maybe these are the people he has most in common with?

Anonymous said...

This is a little off the point, although a little related and a thought to ponder. My Deaf-Blind husband's parents were told back in the 60's that ASL was bad, bad, bad, bad. They listened to their doctors, their pastors and the like.

My husband was raised oral with his Deaf-Blind brother and sister. Then the three of them were diagnosed with Usher Syndrome a while later.

Now that they are in their 40's, their vision is pretty bad. Can they communicate independently with their parents? Nope. How do they communicate with their parents, you ask?

My husband uses me, his Deaf-sighted wife, to interpret.

Most of the times, I don't mind interpreting, as they are my family... but I'm sure they miss an independent conversation, a private one-on-one conversation, an intimate conversation. You get the picture.

Hummmm.... so, perhaps the oral/auditory method isn't always the answer???

My in-laws have told me that they sure wish they knew ASL. I do, too.

Anonymous said...

Hi Marijka,

Yes, this is his future. That is because he is not alone. He will feel better if he interacts to ANY deaf people, especially, the CI users. So that way, he will feel the same boat as the CI users'. He will make the choice if he wants to learn ASL or not. As long as he will learn and interact from other CI users.

Your son will recognize and knows that he is NOT alone.

That is the main key.

Smile, White Ghost

IamMine said...

Great advice, White Ghost! ;)

We wish you good luck, Marijka, and feel free to visit anytime! :)

I'm going to steal JohnABC's favorite sign off:

Long Live ASL! :D

C said...

Marijka: My point being the argument most have was that if their child has CI, they are hearing and are "normal". I was trying to make a point that it is not the real thing. I agree, if one has never heard anything, and can all of sudden hear with CI, one would never know the difference. I've heard that it's not the same as normal hearing.

Marijka said...

To Anonymous regarding Usher: In this day and age, it is possible to test for some forms of Usher (the one causing profound deafness at birth, I believe) through a genetic test that would allow parents to know if their child will also lose their sight. There are also retinal tests that can detect the beginnings of vision loss even before it is obvious. In this day and age, cochlear implants are available that can deliver very good quality sound to infants. If your in-laws had had these tools at their disposal when your husband and siblings were born, I doubt they would be lamenting not learning ASL. Knowing their children would lose their sight one day, had they been born today, chances are they would have given them the gift of being able to at least hear (with both ears through bilateral implants so they could tell where sounds are coming from.) Implants, had they been available, would have given the children more independence. I can't imagine it being easy to use ASL if you can't see. Cochlear implants plus auditory-oral would have definitely been the answer in this case.

Barb DiGi said...

Jeannette,

I want to take the time to say thank you for sharing your experiences with your deaf son. I am happy to know that ASL made it possible to enhance vocabulary development for your son.

You are right that NAD or perhaps a new organization like Deaf Bilingual Coalition needs to be more proactive and reach out to hearing parents by giving more support.

I truly appreciate your open mind to include a variety of ways to communicate including the use of ASL with your son and having him interact with deaf peers.

You are doing the right thing for your son and the more you share to other hearing parents of deaf children, the more awareness will occur. I just don't understand what is the big deal about not including ASL either. Somehow, someone is doing a good job scaring parents away by shielding their deaf child(ren) from ASL and that is what I am trying to undo.

I wish you the very best!

Cheers,

Barb

Melissa said...

I'm writing here as another parent of 2 CI children who also never learned sign language. I am at a later stage with this, though, than Amy, as my children are now ages 20 and 12. If my 20-year-old were not out of the country at the moment, I'd have her write in because she would be speaking for herself and would tell you how she disagrees with much of what you have written.

My daughter is bilingual, just not in English and ASL but, instead, in English and French. She is fluent not just in written French but also in Spoken French, achieved the highest level of superior on an oral only French language competition during her senior year of high school, and has lived in France for the past two summers conversing only in French while there. She is also a student filmmaker who edits not just the video but also the audio portion of her films, adding music to them as well. She is very content and grateful with the choice that my husband and I made for her 18 years ago to have her be one of the earliest children in the U.S. to receive a CI and to teach her language through the Auditory-Verbal approach.

According to what you have written, you feel that she is missing something in her life because she is not a part of the deaf culture and never learned sign language. She feels that she has no need to learn sign language and is leading too busy and too rich a life to find the time to do so. She is not lacking for deaf friends either, but her deaf community is comprised of some oral CI friends whom she's met throughout the years at CI conventions.

Neither of my girls needs lipreading or other visual cues. They hear and speak beautifully, including on the phone. My younger daughter, who was implanted 16 months younger than my older daughter was, hears so very well that she scores 100% on the CNC single syllable word test through her hearing alone. That is the hardest test of auditory comprehension. Why does she need to learn sign any more than a hearing child does? She attends a mainstream school where she does very well, has normal hearing friends, goes on trips with her Girl Scout troop, has language that is above age level and a reading level that is above grade level.

The option to learn ASL and be a part of the deaf culture is only that, an option. It is not the end all and be all, especially today when cochlear implant technology affords deaf children the chance to hear so well and to have that hearing and language come so easily. These children do not have to struggle to learn spoken language the way oral deaf children did many years ago. They are leading rich and full lives with parents and friends who are very accepting and supportive of who they are and who believe that they can do anything that they want to do. If they are leading happy and fulfilling lives without sign language, then what business does anyone else have judging them or the choices they and their parents have made? The 180 degree view would be if I or my daughters were to tell you all that you are missing by not getting CIs and hearing as well as they do. Supportive and involved parents can raise very happy, successful well-adjusted children even without the input of the deaf culture who only think that they know better but who aren't there every day to love and nurture those children.

IamMine said...

Hi Melissa, I know who you are.

You are that famous mother with her two CI children that have been all over newspaper and TVs in the past.

I remember a story where your daughter came on a forum and saying how pleased she was with her CI. She also went on to say it was worth the trouble when you fought with her to keep her CIs on when she was 2 years old.

She also explained about a year where her CI failed and she experienced isolation and refused to go anywhere without you. She felt her life went back to normal when she got re-implanted.

You also said you refused to invest time in ASL because you believed it was a waste of time.

Had you learned ASL, you would have been able to communicate with your daughter when her CI failed for a year without her resorting to lipreading.

I'm glad she is doing very well now.

The point here is that ASL SHOULD have been encouraged to deaf babies - even CI ones - to help them communicate with their parents at an EARLIER age.

If hearing babies' vocal cords have NOT been developed to communicate with their parents and ASL paves the way....how in the world is deaf babies any different?

That is the whole point here, Melissa.

Melissa said...

You wrote: "She also explained about a year where her CI failed and she experienced isolation and refused to go anywhere without you. She felt her life went back to normal when she got re-implanted."

I am not sure where you got this. Nothing could be further from the truth, and certainly my daughter said nothing even close to this. When her CI failed, she could have curled up in isolation while waiting for her new CI to be activated. Instead, she left the audiologist's office after the failure was confirmed and insisted on going to school. She didn't miss a day of school until her surgery and relied on her very good lipreading skills and notes from teachers and other students to get by during the all of 15 days that she was without sound. She maintained her grades and her honor roll status. My daughter has amazing strength thanks to who she is and the support she has received, which is my point. Loving and supportive parents and extended family make all the difference, not ASL and strangers in the deaf culture.

You are missing the point that today with early implantation ASL is not necessary. Babies are being implanted at 6 months of age. They very quickly catch up with their normal hearing peers in a matter of months to at most a year. This happens, though, because they are immersed in the hearing world and bathed in sound and spoken language.

As for vocal cord development - Children implanted at very young ages develop very normal voices. There is no difference between them and their hearing peers. ASL doesn't pave the way for anything additional other than knowledge of ASL and a second mode of communication.

Devil's Advocate said...

Okay, okay, I get it. Are you telling us that since CI technology of today is so advanced that it makes learning ASL as a first language as unnecessary because with a CI the implantee is effectively a hearing person in all ways that count? Is that your final argument against Bi-Bi advocating group?

If so, what is wrong with just allowing DBC go ahead and have their own demonstration if you are so confident?

Melissa said...

Whether or not you demonstrate makes no difference to me. Parents such as myself and Amy have no insecurities about the choices we have made, and children such as mine are now grown young adults speaking up for themselves and leading their own lives.

What I would like those in the deaf culture to accept is that this is not only a matter of parental choice but also that deaf children raised with early CIs and without sign language can lead very happy and successful lives just fine fully mainstreamed in the hearing world. Issues such as early access to language, difficulty learning spoken language and ease of socialization are not factors as they were in the past.

Also, hearing parents meet children such as mine or Amy's and see firsthand the results of the path we have taken. That allows them to make an educated decision, and they have the right to receive accurate information and make that decision themselves without getting flak from anyone espousing any of the various options.

IamMine said...

Melissa,

My memory may be poor on the exact quotes and my computer died so I don't have a copy of that letter your daughter wrote. So I apologize for the inaccurate statement.

I am NOT attacking you or her for not knowing ASL - but pointing out that it could have been useful in certain situations.

The only reason I remembered you very well is how you attributed ASL to the literacy of non-implanted deaf people who used ASL as their first language.

You even pointed out the "studies" on them. Even Amy said, "I'd like to carefully point out the literacy on various blogs..."

Whoa. Wait a minute. It's the EDUCATION system that failed them. This is where the Bilingual Education comes into the picture to fix this solution and it’s relatively new.

You pointed out the successes in your children - which is BEAUTIFUL! Good for them! But don’t assume every CI child will have the same result.

You also gave out impressions that none of it would have been possible had they NOT been implanted!

There ARE successful deaf people out there - even filmmakers like your oldest daughter.

You also pointed out that had she not been implanted, she would have had fewer opportunities in attending various colleges.

That is a FALSE statement. Under the ADA law, a deaf person can attend ANY college, not limited to deaf universities - namely NTID and Gallaudet.

I am all for parents’ rights in deciding for their deaf children – but please don’t tell me that it would LIMIT them if they decided not to implant their deaf children or taught them ASL.

That is insulting our intelligence. We don’t consider ourselves isolated from the hearing society either.

Even if deaf babies were implanted at 6 months, Melissa, they still cannot communicate until they are ready to make connections with sounds and spoken words – just like a hearing baby.

Melissa said...

One of the main premises of the Auditory-Verbal approach is that the parents are their children's primary language role models during the formative critical early language learning years. This is why deaf children born to deaf parents already fluent in ASL do not have many of the language and literacy that those born to hearing parents do. As a hearing parent, I was best equipped to teach my children my first language, and it was a job I happily and skillfully immersed myself in with the guidance of our Cert. A-V therapist. You say that the education system is at fault, but I do not think that this is the whole answer. The fact is that most hearing parents of deaf children do not achieve a necessary fluency in ASL to be their children's primary role models and leave too much to the schools. As I said before, involved parents are the key. As an involved A-V parent, I made sure that my girls got everything they needed educationally to achieve success, and this meant doing a great deal of it myself. I firmly believe that every deaf child with no other significant disabilities that would impair their learning spoken language can achieve what my girls have as long as their parents are willing to make the necessary commitment.

I never said that a deaf person who cannot hear and speak cannot lead a full, happy and successful life, but there are things that the hearing world has to offer, such as music, speaking on the phone, attending movies with ease, etc., that I wanted for my girls that would not have been open to them without CIs. In addition, while all can attend any college, socially to attend a regular school and college able to communicate with everyone with ease certainly makes for an easier time.

Melissa said...

Correction:

This is why deaf children born to deaf parents already fluent in ASL do not have many of the language and literacy that those born to hearing parents do.

was supposed to be

This is why deaf children born to deaf parents already fluent in ASL do not have many of the language and literacy issues that those born to hearing parents do.

Squ65 said...

Amy and Melissa,

Just wait and see when your kids become 18 years old or finish high school. I was one of them. I grew up oral and I often was told that I am hard of hearing (which is not true) because I speak fairly well. Today I have considered myself as a Pride Deaf woman. I wish that I had learned ASL many years ago. I also wish I had made alot of Deaf/HH friends back then. I respect you that you've chosen your kids to learn to speak and many more. I am not surprised that you will regret this later on. Wait and see .....
Pardon my bad grammar. :-)

Melissa said...

If you go back and read what I wrote, you will see that my initial point was that my older daughter is 20 and is very happy and grateful with the choices we made for her. You will see that this is the case with an exponentially growing number of oral CI children. Things have changed. Either accept it and be welcoming to those who choose a different path from you, or you will see your numbers dwindling.

Now, I'm signing off as I'm going out of town and have no more to say on this subject.

Rachel said...

Reading that deaf children raised as I was will grow to resent their parents really offends me. Here’s Melissa’s 20 year-old daughter. I just saw this blog and these comments. The debate of the hearing world vs the deaf culture will always be endless, but I need to speak for myself. I am currently in Israel, and was just also in Italy and France. I could not have been a world traveler without having cochlear implants, being raised with the Auditory-Verbal approach, and being able to speak English fluently. The world is changing rapidly and becoming smaller and smaller with the advancements of technology. New technologies are going to continue to be invented, and we’ll love some of the new technologies, and we may hate some others but will have to accept most of them. A large majority of the new technologies that are being invented are helping us to communicate with others around the world cheaply to share research data, participate in trade, and attend conferences. This means that nowadays learning a second speaking language is becoming necessary in order to communicate with other foreigners. When I first started elementary school, we were not required to start learning a second language until high school. Today, elementary students have to learn a second language. My younger sister, who is 12, was born profoundly deaf and has cochlear implants, has been learning Spanish since kindergarten. In fact, in most countries in Europe, by law, students are required to learn English and one other foreign language in order to participate and compete in the global world. I learned French in all four years of high school. I am fluent in French and traveled to France three times not only because I adore the country, but also because I have great French friends with whom I have a blast. Every time I visit my French friends, I always ask myself where I would have been if I didn’t have my cochlear implants. French is a very hard language to learn as it has very different sounds and pronunciations, but I was able to learn it successfully because of my cochlear implants and the Auditory-Verbal approach. Like my mom said, I was in a state-wide foreign language competition during my senior year of high school and was awarded in the superior level, the highest level. The exam was conducted only orally. Even if I didn’t know Italian or Hebrew when I traveled to Italy and Israel, at least I knew how to speak English very well as English is a universal language, and thus, most people know it. ASL is not as universal as English, and not as widely spoken as Spanish, nor French, nor Chinese. I can’t travel around the world without knowing how to speak English and at least one another language. How many people am I going to find who communicate in ASL in other countries? I know many people will tell me that I could just hire an interpreter to travel with me and let the government pay for it because of the ADA law. Money does not fall from the trees. Not only do cochlear implants change lives positively for thousands of people like me, my sister, and Amy’s sons, and but they also save a huge amount of expenses from the government’s pocket as they do not need to pay for interpreters, TTYs and some other deaf accommodations for us. We should take that into a consideration. Also, I would feel less normal if I had an interpreter following me everywhere everyday rather than just simply speaking a language everyday. Also, it’s better to know several speaking foreign languages than just ASL due to today’s society.

“Just wait and see when your kids become 18 years old or finish high school.”

I am 20 years old now, and like I have said, I am very happy with my cochlear implants and I don’t regret not learning sign language. In fact, like my mom said, my life is too busy to learn sign language as I am leading a rich life by attending a university, being on staff for the school newspaper, and traveling. Even if I don’t know sign language, I still have many deaf friends with cochlear implants with whom I speak on the internet on a regular basis and have met them at cochlear implant conventions throughout my life. We’re all leading very similar rich lives.

Nowadays, the pediatric cochlear implant pioneers are adults and are heading out into the world. Most of us are thankful to the inventor, Graeme Clark, for making a positive impact on our lives, and to our parents for making the best decision. Basically, we are the new generation of deaf people. Like my mom and other people said, accept our new generation or watch the number of deaf people being raised with ASL decrease. With the advancements of medicine, eventually in the future, we could have stem cells, gene therapy and all sorts of medicine that could fix children’s deafness at birth. For those who are former oralists, they likely have had difficulties because they were not part of the new generation of early cochlear implant recipients.

One of my dream careers is to work for CNN or another news companies and to live in France and transmit news from France to the United States. Or, I’d like to be a documentary filmmaker, which requires hearing sounds as I edit the film and music. These careers would not be an option if I didn’t have cochlear implants. If my parents raised me without cochlear implants and with ASL, I would be very distraught to have limited opportunities in life and to be immersed in the deaf community. I’d rather have normal hearing friends who speak English fluently, deaf friends, AND French friends who speak French fluently than just normal hearing English speaking friends and deaf friends.

“She also explained about a year where her CI failed and she experienced isolation and refused to go anywhere without you. She felt her life went back to normal when she got re-implanted.”

This is a complete FALSE statement, and I have never said that I felt isolated. When my implant failed, I did NOT regret at all not learning sign language as I was completely deaf TEMPORARILY only for two weeks out of 52 weeks in a year. How many times in my life will I have to go through a cochlear implant failure? Very few times – probably only about two or three times. I continued to go to school everyday while I was deaf and lived well everyday in the silent world by reading lips and having my friends write notes as it was a very short temporary time for them to do it. The word “isolation” may come from the fact that I was isolated from sounds. In other words, during the very short period of my life that I was completely deaf, I felt bored as I couldn’t watch TV or listen to music. Even though I could watch TV with closed captions, it is not as amusing as watching TV with sounds.

I would recommend you all to watch Sound and Fury Part 2 if you have not seen it as the girl, Heather, who has been raised in a deaf family, is very happy to have received a cochlear implant and, actually, has always wanted to have one.

On the other hand, I do respect ASL as it is an option for a few deaf people who cannot be implanted at all for valid medical reasons such as people without a cochlea or who have no auditory nerve. However, cochlear implants with Auditory-Verbal therapy are the best option for millions of deaf people in order to have many opportunities in life, such as learning to speak other languages fluently, watch TV with sounds, playing most musical instruments that certainly require hearing the sounds, listening to the world’s popular technology, the iPod, and attending concerts.

Devil's Advocate said...

Ooo! Hearing world TRUMPS all! Oh, what a tragedy to our shrinking Deaf community! Oh, pity us as our community is stepped down and crushed into bits and pieces! What a grand finale!

The One and Only Ridor said...

Devil's advocate: You know, many said that the sarcastic remarks often reflected the sign of desperation.

You sound very desperate in an attempt to deflect the issues upon others.

How pitiful.

R-

Anonymous said...

Rachel --

The girl, Heather, from the "sound and fury" uses ASL. Don't you forget......

White Ghost

Anonymous said...

Rachel & Melissa,

I am very impressed with your success story. I'd like to ask about Rachel's social life. Has Rachel ever felt left out with her hearing peers? I heard that CI children often have a hard time fitting in a large group of hearing children (probably more than 8 or 10 of them) because of noisy background that would make it difficult for them to understand spoken language even though they could speak and hear very well like their hearing peers. A lot of them often feel lonely at regular schools. Is Rachel able to interact with hearing people at a large social event or at noisy cafeteria at school? Does she have a lot of hearing friends or only a few hearing friends who understand her special needs? Does Rachel accept deafness as part of her identity? Does she tell everyone that she is deaf or hide her deafness with the CI? Does she ever feel different from her hearing peers because of her deafness? I'd like very much to hear Rachel's answers to those. Remember that most CI professionals such as audiologists and therapists are not exactly experts in deaf education or psychology of deaf children. They only are responsible to make sure CI works for deaf children.

Also, you don't seem interested in learning ASL and that is your decision. However, a lot of hearing parents want to use ASL with their hearing babies to help them communicate more easily until they start speaking at around age 2 and ASL also increases their intelligence. A lot of hearing children who are born to deaf parents with ASL are usually smarter than hearing children with hearing parents because of ASL at much earlier age. My hearing child is one of those examples and he is ready for Kindergarten at age 4 while his hearing peers aren't. My 2 yrs old deaf child with CI is also much ahead in her developments than her hearing peers at day care because of ASL and she just started AVT. A combination of ASL and AVT would benefit her. It is not hard to learn baby signs as they are pretty basic and would benefit infants immensely. I don't understand why you avoid sign language only because of AVT. I don't think that ASL would interfere development of spoken language as long as we keep ASL separate from spoken English. Why can't deaf children use both visual and hearing senses as much as possible??

I'm trying understand why hearing parents don't want to learn any sign language for their deaf infants. Maybe they are told by AVT not to sign at all but I disagree with that and wouldn't want deaf infants to lose language while waiting to receive CI and develop spoken language. They usually don't learn to speak until around age 2. However, it is up to hearing parents and I respect their educated decisions, although I may not always agree with them.

DeafParent

Anonymous said...

I'd like to add comments. Hearing parents could start signing to their deaf infants until they receive CI and start speaking at age 2 or 3. Then they may drop sign language when the children pick up enough spoken language. That would make sense but for me I'd expect my deaf child to continue ASL as it s our primary language at home and she could use spoken English at school just like my hearing child does.

Also, I agree that CI does make a big difference on deaf children's lives and they'd not need many accommodations such as interpreters in the hearing society. It'd give them much more independence. It s amazing! I wonder if there are a lot of successful deaf adults who grew up with CI like Rachel out there and I haven't met many of them. I hope to meet them someday and they'd be good role models for my deaf child especially those who are bilingual in ASL and spoken English.

DeafParent

Melissa said...

Rachel is still out of the country with sporadic internet access. I'm sure she will respond eventually, but I will chime in with a few comments of my own.

First, I never got the whole accepting deafness as part of an identity. It is very much a part of who my girls are, and they know and accept that, but it doesn't define them. They also make no attempts to hide their deafness or CIs. We have always raised them to be comfortable with who they are and to take pride in what they have accomplished. One of my favorite stories that exemplifies their attitudes occurred when Rachel was 7. She was getting ready for school and decided to put her hair in a ponytail, something she hadn't done before. She has very thick, long hair, and so ordinarily none of her CI processor was visible, but with her hair up, all of it was. I debated with myself whether or not to say anything to her because she couldn't see the back of her head. I gently let her know about it. She looked at me and said in a very confident voice, "That's okay Mom, I think everyone knows I have a cochlear implant."

As for not using ASL - The A-V approach when done properly is not a bunch of techniques but is, instead, an all encompassing way of life. While I only did formal work at the table with my girls for about an hour a day, I seized every interaction with my girls throughout the day as a language learning opportunity, from playing with them to having them with me while sorting laundry, making dinner, etc. I was way too busy doing that to set aside time to learn sign or to take time away from their learning of English to switch to sign, and I didn't and don't see how it would have been advantageous. I immersed them in spoken language just as the most successful programs for teaching hearing children a second language are immersion programs. I did not set aside time during each day to work on spoken language. It was an all day activity. Most of the time, my girls didn't realize they were being taught anything. They were simply enjoying Mom's time, attention, and interaction.

The other point I want to make is the constant use on this blog and similar ones of the implant age of 2. While this was the case with Rachel, it is far from the norm now. Even 12 months as the age of implantation is dated as many surgeons are implanting at younger and younger ages at their discretion. Thus, the time you talk about waiting just isn't there. A child implanted at 6 months takes off with learning language through hearing very rapidly and catches up to his/her normal hearing peers very quickly.

Melissa said...

One other point - Jessica was implanted in 1996 at the age of 15 months, at the time the youngest congenitally deaf child in the U.S. to receive a CI but still older than today's kids. By age 6, she "graduated" from A-V therapy with language that tested 6 months to two years above age level in all areas. With results like this, I fail to see how ASL early on could have done any more for her cognitive skills. Today, she is an avid reader, having read 20 books already this summer, including the latest almost 800 page Harry Potter book in less than 2 days. Jessica is not an exception. Results such as hers are typical of the many A-V kids whom I know.

As I said before, Rachel has won foreign language competitions in spoken French and was the one student selected out of 800 juniors and seniors during her junior year of high school to win her school's foreign language award. At her high school graduation, she won her school's Faculty Cup award, an award given to one outstanding graduating senior voted on by the entire faculty and administration. This was in our regular neighborhood high school where she was fully mainstreamed. Again, where is the issue with intelligence or cognitive skills? I have a friend whose daughter was born deaf, has a CI and also has multiple physical disabilities. She also was raised A-V with no ASL. She consistently scores 99th percentile on standardized testing, in particular on the verbal portion. These are just a few examples. I could go on.

The key is the early and focused attention on immersion in language and is not something ASL has a monopoly on.

Melissa said...

This is in response to DeafParent - Yes, there are many older kids like Rachel out there. Those who were implanted as toddlers represent the beginning days of CIs in young children and so are fewer than the many coming along now. However, you only need to attend the Northeast CI convention in Sturbridge every other year to meet and interact with several of them. Many of these children come from NYU, which is where my girls were implanted, because NYU started doing CIs earlier during the FDA clinical trials. For years, we attended these conventions where large groups of these kids would have a great time together all weekend, staying up late at night in one of their rooms all TALKING to each other. These kids formed Rachel's deaf community. They weren't part of her everyday life in school, but with today's technology, they've easily kept in touch over the years and visited each other on the off convention years.

Rachel said...

In high school, I was very active in extra curricular activities and social life. I was the president of French Club for two years, vice president of Film Club, and an active member of a few community service clubs. Basically, my social life was so busy that I had to BEG my parents for a car so that I could stop begging them to drive me to places. So, I was never alone in high school. I went out to restaurants with friends often, and certainly, most restaurants that I go to are noisy, but I always made sure that I sat in the “most middle” section of the table so that I could see everyone. Plus, my friends were always aware of my hearing impairment. For example, on a few occasions, if I had a hard time understanding the waiter, one of my friends would repeat for me without my asking. Having good friendships works by letting them know about my deafness and asking them politely if they will repeat what I did not hear. I also always make sure that I stick to a good crowd of friends who are understanding and respect my disability well. As soon as I find out that they’re not willing to accept me, which I usually find out right away, I just say “screw you” and know that these people are likely going to hurt other people as well. I have seen this happen – people who have hurt me have done it to others.

This past first year in college, I was having a slow start as I was in a completely new and different atmosphere and, thus, I was only involved in the school newspaper. However, I plan on getting involved in more activities this coming school year which will broaden my social circle.

I have always felt different from my hearing peers, but I took ADVANTAGE of it. It made me stand out MORE than other people. When I applied for college and scholarships, it was easy for me to write essays about my life because I had a unique story. I was able to speak about my obstacles and successes involving my hearing impairment. Also, I had a broader range of scholarship opportunities as I was able to apply based on disabilities and obstacles. If you ask any early pediatric cochlear implant pioneers, most will agree that they should take advantage of it.

Anonymous said...

I am the hearing parent of a child deafened by meningitis as an infant. She got an implant just after her first birthday. We used S.E.E. after she lost her hearing, and continued it for several years. We wanted her visual language and verbal language to be the same. After a while, she simply didn't need the sign. And we never got very proficient with it. She is mainstreamed and is at the top of her class in school. Yes, with only one implant, she does miss some things, but is good about asking for a repeat. She loves to talk, and is very social. Even if we had immersed ourselves in ASL, without the implant she would be isolated from her large extended family. We do not have a moment's regret over getting her implanted.

If you are going to implant a child, it needs to be done as early as possible so the brain can make the necessary development to understand verbal language. Most of the frustration occurs because the implant was done too late.

I believe that the parents are the best judge of what their child needs. AV therapy works amazingly well for hearing families, but would not work well for deaf families. My disappointment with the Deaf Community occurs when they don't respect my choices for my child. I believe that all options should be available for parents of newly diagnosed deaf children, without bias. The idea that the child should be allowed to "choose" an implant when they are old enough is absurd. Simply delaying implantation for 5 years means that it won't work well since the brain is not plastic enough at that age to make the necessary connections. Whether or not to implant should and must be a decision made by the parent. That is their job. We do not let children raise themselves. We are their advocates.

Kim

Barb DiGi said...

Hi Kim,

Thanks for sharing your point of view. I totally understand about the path your deaf child has chosen to use speech instead of signs because of the environment she is in where I suppose not a lot of people are ASL users and that she is able to hear well enough to manage conversations. I am really glad to know that she is being successful with her academic progress and that is the most important thing to have also having the ability to interact with her family and peers in a close knitted style. I just hope that someday she will be able to experience ultimate interaction with deaf people that she may appreciate ASL. There are a lot of CI users who re-discovered themselves when they went to college with deaf students and I oftenly heard how they found themselves.

However, please allow me to argue that it is not necessarily the case for a deaf individual to be isolated if he or she doesn't have a CI. You cannot possibily make that statement to describe deaf people without CI in general since I myself regardless coming from a deaf family happened to have a very close relationship with grandparents and relatives who are hearing and don't use sign language. I even grew up in a public school with no other deaf students not even with an interpreter. I thought I got along fine but as I got older I realized I have missed out especially in high school and in large groups. I just have this personality that I like to know everything what is said since I don't like to sit back and be quiet. I can't even stand to miss one thing but when using ASL with other people, I feel like everything is crystal clear and comfortable to express in it. I am profoundly deaf but I do wear a hearing aid only on one ear that helps me comprehend speech and produce speech. But not wearing hearing aids doesn't mean he or she is isolated as well. It all depends on the personality. For instance, my mother who is profoundly deaf and wears no listening devices interacts fairly well with her hearing family and relatives. She is popular in the family and she always get to talk with them. It also depends on how hearing people accept a deaf person and their attitude. In other words, it is their perception making them isolated!

Erin said...

I am the parent of a five year old bilateral CI user. As most people have indicated in this blog, it is the choice of parents to decide what will work best for their family.

I had a hard time just getting my child diagnosed. She kept passing the hearing tests in the booth. I insisted that the ENT do an ABR which confirmed profound deafness. She was 18 months old when diagnosed.

Prior to diagnosis, I knew she was not hearing. I knew nothing about deafness, I didn't know any deaf people and had only heard about Rush Limbaugh receiving some "ear implant"! We lived in a small town and the nearest deaf community was 2½ hours away.

I jumped right into sign language and my daughter had a large sign vocab by 2years old. She received her implant and was activated at 26 months. The therapy we used was inclusive of her sign language. She already had language and picked up on the spoken word quickly. She started kindergarten this year and is well ahead of her hearing peers, she reads beyond first grade level. She even writes sentences.

Last summer she developed a massive cholesteatoma in her implanted ear and was left without access to sound for a month. We used sign language with her and she read lips, she is an excellent lip reader, but she always "spoke" back. She had to be re-implanted and received a simultaneous bilateral implant. She is doing incredible.

We do have her in an oral program, but we continue to use and learn sign language. I started signing with our now 2½ year old hearing son the day he was born. You would not beleive his language abilities. His language is well ahead of age level. And his sign vocab is very large.

This was our choice to implant, which was difficult. Nobody wants to see their baby/toddler go through surgery, and in our case three total implants before age 5.

I will never disrespect any parents choice one way or the other. It is a very delicate issue with so many emotions involved.

Anonymous said...

Hi Barb,
My daughter does enjoy using sign language, and I have no problem with her learning ASL when she wants to. But the reason we got her implanted has more to do with giving her full access to the hearing world, not denying her access to the Deaf world. She now has the opportunity to fully integrate herself wherever she chooses. And that is the bottom line for me. Giving her the implant kept more doors open to her in her future.

Kim

Erin said...

I wanted to say one more thing. At the time of implantation for my daughter, we were told of the hard work that has to be done. You MUST be on board and available to do the hard work. At first I was just hopeful that she would hear environmental sounds for her safety. Now we have a non stop talker! BUT we worked very hard, EVERYTHING was a language lesson. And continues to be. I know how hard we worked now that I have a hearing son who picks up on everything.

I have seen a child that was implanted at 1 year of age, a year younger than my daughter. He was 7 at the time and she was 3, her language far surpassed his. I found out he was in and out of Foster Care his whole little life, thus resulting in the implant not working well for him as the support wasn't there. He is in the local TC program and signs quite well.

Every situation is different.