Comments on Random Thoughts and Musings by moi: More Thoughts for Hearing Parents and for Us to Co...

Argh. I mean, "...how widely distributed it become...

2007-07-25T17:14:00.000-07:00

Argh. I mean, "...how widely distributed it becomeS..."
Shutting up now. *rueful grin*

I forgot to add... Amy Cohen Efron's comments are ...

2007-07-25T17:12:00.000-07:00

I forgot to add... Amy Cohen Efron's comments are quite reasonable. Since the info is already out there, it implies permission (before we knew about what actually happened). I think this is something that's quite normal - someone puts something up for "family and friends only," not realizing how widely distributed it become. I've had to lock my private blog so it's only open to people who log in because people other than the intended readers were accessing it, so I understand both perspectives completely.

Both Amys, please do come back and feel free to comment anytime. Thank you both for continuing to write in and share!

Amy, I'm sorry you've had to go through all this w...

2007-07-25T17:05:00.000-07:00

Amy, I'm sorry you've had to go through all this with your YouTube videos and your website. That must be so frustrating. Please know that most of us would not post someone else's information/posts/website in such a public manner. I hope you'll come back and continue this dialogue ... and that your privacy is restored without too much hassle.

Ms. Efron, now that you have made it simple for an...

2007-07-25T11:40:00.000-07:00

Ms. Efron, now that you have made it simple for any crazy person to locate us via the connections YOU provided in your dialogue, I will never, ever comment on a deaf blog again. Our youtube video, which was originally posted only to friends and family, was posted on deafread without our permission by some as-yet unknown woman calling herself Kathy. Jerad's post was responded to by me (because he was accusing us of it being a "fake" site) but also originally posted about without my having any say about it. It is true that my involvement with other parents of CI kids means that a few people know about it, but I never intended for the general population to find it without a bit of a search. Our website was not really put out there for deaf culture advocates, but for friends, family and parents that we meet. When I get around to updating it, I'll be sure to take our last name off, which happens to be on the bottom of the last page (clearly, that was a mistake). I'm sure some DC people are thrilled that I won't post anymore, but for those who actually asked me for information and research, I'm sorry but you will have to contact me privately if you wish to have any more discussion.

I hope that others learn from this that it is completely in appropriate to identify people's last names, locations or other personal information without their express consent. Why make it easier for predators? I would never do that, regardless of whether or not I agree with their opinions. Your choice to include your own identification is your choice alone. Sure, with research a lot of information can be found, but there was no cause to make easy. It felt like a slap in the face.

((Note: I removed Amy Cohen Efron's post upon Amy...

2007-07-24T21:33:00.000-07:00

((Note: I removed Amy Cohen Efron's post upon Amy, the hearing parent's request, because she was concerned about her last name showing up. Amy Cohen Efron has *every right* to express her opinion, and I would never remove her post without making sure her opinion came across. The below is *exactly* what Amy Cohen Efron posted here, except for removing one last name. Amy C.E., I apologize for the inconvenience.))

Amy a dit...

Amy (last name deleted),

Do you really want to have your last say in most of the blogs discussing about this topic?

Can you show us some kind of respect by *listening* to them who were trying to express their arguments and beliefs that adding American Sign Language ALONG with the auditory-verbal approach to Deaf babies with cochlear implants WILL come with lots of benefits?

Most of us were bothered by how you present your information by using the example of your children as successful candidates, therefore, you are implying that *every* Deaf implanted children WILL be like your children IF they are NOT exposed to American Sign Language.

Please remember that many of us do respect your decision what you do with your own children.

Amy, you may need to realize that not *every* implanted Deaf child benefit from the AVT approach alone, due to various reasons. They deserve having visual language (ASL) acquisition along with AVT approach.

I don't hear that from you, except making sure you have your last say at every single blog entry about this topic.

Why is that?

Amy Cohen Efron
Atlanta, GA

(P.S. I would like to meet with you sometime soon.)

7/24/2007 05:02:00 AM

Dear owner of "Random Thoughts and...," please rem...

2007-07-24T16:21:00.000-07:00

Dear owner of "Random Thoughts and...," please remove my last name from the post by Ms. Efron. Just put stars in place, you don't need to remove the entire post unless you prefer to. I appreciate you doing this. I am quite concerned about it. I would be happy to email people privately if they would like to know us better, but I do not want full names on a blog. Clearly people can find me if they want to, but I'd prefer it not be quite so easy.

Thanks so much.

Amy, a parent of two CI children:Your identity was...

2007-07-24T16:14:00.000-07:00

Amy, a parent of two CI children:

Your identity was revealed since you first responded to Jared Evans' website about specific website that you have updated with pictures of your children about a month ago.

You have identified yourself as the parent of these children, and on your personal website, you have your family's last name published. Also, on the YouTube, your last name was published.

Since you are very actively involved by making long comments on several blogs, we make connections about you online very easily. Now, you don't appreciate me revealing your identity. Then I apologize.

Amy Cohen Efron

Cy,I explained in my post that my older daughter i...

2007-07-24T16:06:00.000-07:00

Cy,
I explained in my post that my older daughter is out of the country, and she doesn't have email access. I don't want to get my 12-year-old involved in this as she is still a child. What I will post is an essay my older daughter wrote while in high school entitled "Leaving Silence Behind." In addition, my older daughter has a website, www.cochlearimplantonline.com, but something is wrong with it now, and I don't know how to fix it. Thus, it won't be up online again until some time after she gets home in August. Here is her essay, though, in which she speaks for herself very well:
----
Leaving Silence Behind

Without the rigorous but tremendous miracles that I've had, there would be no astonishing sounds traveling through my ears and around me to make my life easier. I wouldn't have been able to just simply say or hear "Hi! What's up?" My mouth would have opened and moved as if I were trying to speak, but no words would have come out. My hand couldn't have been raised up in the air to answer the questions in my own crystal clear voice, like other students in my class, not to mention that I wouldn't have been able to pick up the phone and put it to my ear and my mouth to hear and speak to my long distance grandparents, which would make me miss them even more. My beautiful long fingers wouldn't have touched the grand piano to play the tunes of magnificent songs. The waiter at the restaurant could come up to me, but all I would have seen is him/her standing there and his/her mouth moving. What would I do? How could I communicate with that person? I wouldn't even have been able to hear the real quality of sounds of my parents saying, "I love you." Even if I just had a hug meaning, "I love you," it still wouldn't be enough to show the emotions of love. Sounds are needed to be there for me to understand the expressions of anger, happiness, excitement, and sadness. Sounds are precious treasures that cannot be kept away from me. It was almost like having a treasure box with precious sounds inside it, sitting and waiting for me to open it to bring all the real miracles that have come to me.

I can walk in the diversified crowds of people in the halls at school or on the sidewalks in the city with noises surrounding me and seem to be unnoticeably different from each person because I can speak, hear and communicate as though it came as naturally for me. Although, there is something different and unique about me from the rest of the crowd and even from the other students in my classroom, I can still communicate with other people well. That's because I learned to listen and speak with a cochlear implant and Auditory-Verbal therapy!

Melissa,If your children are adults, why arent the...

2007-07-24T15:24:00.000-07:00

Melissa,

If your children are adults, why arent they speaking for themselves? Why are you speaking on their behalves? I think most of us rather hear from from them.

Amy Cohen Efron,Thanks for bringing this to Amy's ...

2007-07-24T12:53:00.000-07:00

Amy Cohen Efron,

Thanks for bringing this to Amy's attention.

I made the same observations and had said among the same lines to Amy on my blog.

I feel she is just deflecting everything we say and bombarding us with research data.

I'm writing here as another parent of 2 CI childre...

2007-07-24T12:46:00.000-07:00

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.

A friend of mine had tried to post but had technic...

2007-07-24T11:22:00.000-07:00

A friend of mine had tried to post but had technical difficulties. Her post follows in quotation marks.

By the way Ms. Efron, I don't appreciate your posting my full name when I did not. I am wary of internet predators since I do post regarding children. No thanks on the offer to meet. I don't have any interest if that's the way you operate. It's obvious that you are trying to expose more details about me just to say "aha" and really, it's quite disrespectful. Someone who really wanted to meet and knew things about me would contact me privately to set things up. Apparently you don't care what happens to me or my kids if some crazy person locates me after you made their job easier.

I wasn't necessarily trying to "have the last comment." I guess someone does in every discussion. It's rather childish to be trying to point out who says what, last. I'll stop now, and will return to my work with parents who are interested in the information I have.

I have never been disrespectful, and I have always referred to the CI candidates and those who are going to succeed as those who are actual candidates for the CI. This would not be referring to those who, for whatever physical reason, cannot be implanted.

My friend's post:

"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. "

I can't even figure out which blog I promised to l...

2007-07-23T20:42:00.000-07:00

I can't even figure out which blog I promised to leave research on. So here it is, and I hope those who were interested can find it:

"Central Auditory Development in Children with Cochlear Implants: Clinical Implications

Sharma A, Dorman MF

Møller AR (ed): Cochlear and Brainstem Implants. Adv Otorhinolaryngol. Basel, Karger, 2006, vol 64, pp 66-88 (DOI: 10.1159/000094646)

Article (PDF 349 KB) Free Preview
Medline Abstract (ID 16891837)

Abstract:
A common finding in developmental neurobiology is that stimulation must be delivered to a sensory system within a narrow window of time (a sensitive period) during development in order for that sensory system to develop normally. Experiments with congenitally deaf children have allowed us to establish the existence and time limits of a sensitive period for the development of central auditory pathways in humans. Using the latency of cortical auditory evoked potentials (CAEPs) as a measure we have found that central auditory pathways are maximally plastic for a period of about 3.5 years. If the stimulation is delivered within that period CAEP latencies reach age-normal values within 3-6 months after stimulation. However, if stimulation is withheld for more than 7 years, CAEP latencies decrease significantly over a period of approximately 1 month following the onset of stimulation. They then remain constant or change very slowly over months or years. The lack of development of the central auditory system in congenitally deaf children implanted after 7 years is correlated with relatively poor development of speech and language skills [Geers, this vol, pp 50-65]. Animal models suggest that the primary auditory cortex may be functionally decoupled from higher order auditory cortex due to restricted development of inter- and intracortical connections in late-implanted children [Kral and Tillein, this vol, pp 89-108]. Another aspect of plasticity that works against late-implanted children is the reorganization of higher order cortex by other sensory modalities (e.g. vision). The hypothesis of decoupling of primary auditory cortex from higher order auditory cortex in children deprived of sound for a long time may explain the speech perception and oral language learning difficulties of children who receive an implant after the end of the sensitive period."

In my 6.5 year old, it is not too early to say that he's doing well. It's obvious. You have to be there to see it, but he's not faking it. So, the use of sign language is not a necessary part of making sure that he is able to communicate. I'm sorry that past experiences have made it impossible for some of you to believe this, but it's true. Not only that, but he's communicating with so many that would otherwise be unavailable to him. He could stay the week at Grandma and Grandpa's house and Grandpa could teach him about WWII, one of his favorite subjects-- something that would be impossible for him in ASL. He can knock on the neighbor's door and ask to play with his friend... he can ask the UPS man who the package is for.

It's pretty hard for hearing parents to think that his having learned to speak so well is a bad thing.

Great dialogue. I think we need to just let Amy go...

2007-07-22T20:01:00.000-07:00

Great dialogue. I think we need to just let Amy go and she can believe what she wants. Like Mark said, I wish her and her sons the best.

It's very sad that she thinks we don't know better. Like someone said somewhere recently, she has implied that we are obsolete relics, antiquities from a different era. She never said so and she doesn't call us names. She is very polite, but everything she says can only lead us to infer that we are from a bygone era and we just don't get it. I disagree. This is just a new incarnation of the same problem we've had for centuries; that is, to be respected and our strengths celebrated.

I am so thrilled with several parents chiming in throughout the various posts saying that they have implanted their children AND are using ASL with their children and exposing them to the deaf community. This is the right way to go. Give them everything possible instead of denying them part of themselves.

I can see how passionate you are about this subjec...

2007-07-22T19:45:00.000-07:00

I can see how passionate you are about this subject. It bothers me too.

I have to agree with Dianrez. Amy commented on my blog and she is staying on the course. As expected. Parents like her tend to think they are right about these things and we are not. Perhaps they think we don't know any better?

I'd be curious to see how her sons turn out as adults and how their parent-child relationship are. I hear a lot about parents like Amy whose deaf children "emancipate" themselves from their families because of overzealous parenting. Children struggle to please their parents and then one day they decide enough is enough which naturally upset the parents.

I agree - this is not about CI at all and I've said so in the comment section of the Amy post. It is about saying ASL delays language development and saying ASL should not be part of language acquisition.

Barb has been as steadfast as Amy in her crusade on ASL movement. We need to back her up and give her support! John Egbert, too.

Having been there through many, many mappings for ...

2007-07-22T19:06:00.000-07:00

Having been there through many, many mappings for infants (my own) I can guarantee that we can identify and assist to the point that my kids are hearing appropriately with their implants. I have a feeling that the man you referred to who has a CI has never breastfed a child in order to note his eye movement during a mapping. I have. I have developed methods and watched closely. Since Elliot was caught up to his hearing peers within only a few months, I think it worked pretty well. The feedback is not the same nature as the feedback of an older child, but an in-tune mother can easily detect things necessary at each frequency. My boys have always indicated hearing in mappings. With each frequency they look up or indicate that they have heard it. We can also do extensive soundbooth testing and can note hearing by how they respond at different frequencies at different db. It's something audiologists and parents are very skilled at doing! Lots of toys, bubbles, playdough and water have been involved. I often bring something new which I think will help.

Today though, response is not necessary, because neural response telemetry in the surgical theater can help audiologists to automatically set levels, and when they have studied these "automatic" mappings they have discovered they vary only slightly from the final mappings or settings in later childhood. Personally I like the "old fashioned" response mapping because we had success with it, but apparently lots of non-compliant kids have been mapped successfully with it (by non-compliant I don't mean disobedient, I mean difficult in some way, whether from physical disabilities or other issues). There is no way that waiting until later is beneficial in today's environment.

http://www.medel.com/ENG/INT/20_Products/10_Pulsar_Implant/999_diagnostic_toolkit.asp

Here is some rationale for those interested:
http://www.agbellacademy.org/Existing_Evidence.htm

There is more rationale relating to oral methodologies in general. Geers, Nichols research... read it on Pubmed.

Barb, realistically, the doctors and audiologists I've worked with in three states will never believe that they are promoting myths and misconceptions because they see the terrific results every day. In and out the children go. I think the biggest misconceptions they deal with are old or erroneous ideas about cochlear implants... that they are in your brain or could electrocute you, etc. The doctors that I know are not only kindly souls, but caring ones also, and believe it or not, apparently not money-grubbing people. The one I have now carries a sack lunch in the mornings... wears the same old tie for months on end (hopefully not in surgery!) and is extremely loving. Although he is considered an extremely conservative surgeon, he consented to OUR insistence that our youngest son be implanted earlier than any he had done. This was not a case of professionals pushing parents. It was a case of parents who understood the body of evidence which continues to point toward "earlier is better" when it comes to implantation. We are not only deeply indebted to our surgeons, but we feel a great friendship with our audiologists and even those at the CI manufacturers. Why? Thes are real people who are trying to do good things.

Sign language is like any other language-- advantageous as it serves you. We use another language, and our kids are able to. Since it is the language of the general population, we feel we've made a good choice. Humans were meant to develop communication, of course, and we encourage that to occur very early so our kids can enjoy communicating with everyone. What we would have done if our kids were born 50 years ago... even I can not say. I just know that my kids are happy little guys with full understanding of the language that they are using.

Excellent, excellent post. I agree with you 100% a...

2007-07-22T16:13:00.000-07:00

Excellent, excellent post. I agree with you 100% and Im also confused by the either/or mentality.

Anyway, youre right, let Amy go. I do wish her kids the best and judging by her comments it seems they are doing quite well. It was hard for me to let go of this because as a oral/mainstreamed student I just cant forget how much EFFORT it took to live that kind of life. The deaf community was, and still is, the only place where I can totally kick back. Its so nice to have that. It doesnt take ANYTHING away from the hearing world.

Anyway... one last thing. Amy did mention "plasticity" and I felt compelled to copy/paste an excerpt on that from my website (it's from the www.deaf-culture-online.com/signing-with-your-deaf-baby.html page if you want to read the whole thing).

Here it is:

In the book On the Fence: The Hidden World of the Hard of Hearing (Handwave Publications, 2007) there's a fascinating article by Jerel Barnhart, Ph.D. He explains the concept of "plasticity" and its application to language acquisition for deaf and hard of hearing children. Here's an excerpt:

Regarding research in learning of language, there are extensive studies that indicate the "plasticity" of newborns' brains. That is, they are able to learn and develop neural pathways quickly and easily. As a child ages, there is less plasticity and less chance of establishing neural pathways in learning new information such as language. There are indications that as early as age three, children begin losing that plasticity. By age five, it is considered that a child who hasn't been exposed to language will probably always be at a disadvantage at learning language and other verbal processes such as spelling and writing.

Now this effectively answers that eighth-grader's fascinating question. Without a doubt, it was my exposure to language -- incidentally, sign language -- between birth and age three that laid the groundwork for everything else.

On a side note: ironically, our awareness of plasticity also fuels the increasing number of cochlear implant surgeries for infants and toddlers. While many of us cringe at the thought of major surgery for kids so young, the research findings on plasticity clearly demonstrates the logic behind it. Regardless of how anyone in the deaf community feels about it, cochlear implants will continue to rise in popularity for this very reason.

Nonetheless, Dr. Barnhart -- who is deaf and has a cochlear implant himself -- advocates on behalf of sign language for young children with cochlear implants. His explanation is that infants can't sufficiently "work" with their audiologists during the mapping sessions that enhances their ability to use their cochlear implants. An older child or adult can provide accurate feedback to an audiologist, but an infant cannot.

There is also the matter of how much a child can hear versus how much a child understands. This is why Dr. Barnhart strongly recommends the use of sign language for all children, including those with cochlear implants, in order to "provide the best opportunity for a child to learn language at an early age."

It doesn't have to be either/or. If you prefer a hearing aid or a cochlear implant, that's fine. At the same time, sign language does not have to be pushed aside. Sign language is truly a gift. For all babies, deaf and hearing alike.

***

Okay, Im happy I got my two cents in. Thanks for the great dialogue on this topic -- it stirred up a lot of deep thoughts. :)

Best regards,
Mark

Thank you for following up on your thoughts to car...

2007-07-22T16:03:00.000-07:00

Thank you for following up on your thoughts to carry on the discussion since I wasn't able to do it due to time constraint that I needed to focus on the preparation for the upcoming social awareness event.

It is our long term goal to form alliance with people (audiologists, doctors, speech therapists, and of course parents) who are involved with deaf children using cochlear implant. Serious education is needed to raise awareness about the myths and misconceptions. You have hit straight to the nail about your research findings. Great work!