Posted by a mom on the Pediatric Cochlear Implant Circle:
My daughter is not a stellar oral child. She is 5 and lipreads a few phrases and
speaks with all her signs but it is mostly unintelligible. Our difference is
that our implant team refuses to do a CI unless we completely drop ASL...we
refuse. (I had never heard this before and was kind of surprised.)
My only insight is that all children are different. Some deaf kids are just not able to learn to speak and listen exclusively, no matter how much we want it.
When my daughter was a little older than 2 we had a highly respected TOD come to
our home and work with us for a few weeks. The second time she came, just as she
was leaving she said "Wow, she is all ASL isn't she! You have yourself a
signer....nothing you do can change that!" She had only had her hearing loss for
about 8 months and it was only 60 db and she was aided to 0!!
Turns out the TOD was right. We do speech and she has been improving, but she just doesn't care all that much. She wears her aids and gets great benefit from them, but not with speech. She sings and vocalizes constantly, she even has sound effects when she plays. We will continue our listening and speech therapy, but our emphasis has
shifted. We recognize that our daughter is fine without speech and that being
happy and having real language is the most important thing, and through ASL and the Deaf community, she has those things.
Our daughter is Deaf. She attends a school and church for the Deaf. Her friends
are all Deaf and we now function inside the Deaf community. My daughter's
identity and personality are intrinsically linked to her Deafness and there is
nothing I can do to change this. I know there are many on this list that do not
feel this way, but that is the path that my daughter has lead us on. We have had
to shift some of our goals and dreams....NOT give them up, just change what they
look like. But for us, this has been our journey.
There has been an interesting thread on the Pediatric Cochlear Implant Circle regarding progress made with a CI, and I wanted to share this mother's post. Hers and a couple of other parents reinforced the same fundamental concept with regard to choosing communication methods and parenting a deaf child: Listen to the Whole Child, because a child communicates in many ways on many levels.
21 comments:
I didn't read this on cicircle as I now just pick up a couple of things a day from there now. However, from what I read here...with a child that age, she's right. I would get that language in!! Sounds like she has a really good set up since the girl is exposed to Deaf culture and since ASL is her primary communication mode. Now, the ci...I don't see why they would want to drop ASL? Most ci teams are not that strict anymore. Yes, they'll want some AVT or some auditory training to take place so the child learns to hear with her ci. Now I'm big on safety issues as this was a huge factor in our decision to implant. I would think that even if she learns to hear and make sense of approaching cars, or someone approaching from behind, that would be reason enough to give a child a chance to hear...regardless of how well they ever speak.
Thanks for sharing this, Jodi. There's a powerful lesson here about looking at the whole child. It completely dismays me when I see cochlear implant teams imposing beliefs or demands on families in regard to language and communication modes and methods. I have heard this from other families through the years, and I'm always thankful for the teams who are supportive toward families who are exploring what their child needs.
I didn't reply to this on the cicircle because, first, my email was down mch of yesterday but, second, I don't have time to get embroiled in a controversial discussion on the cicircle at the moment because my daughter's bat mitzvah is this weekend. So, FWIW, here are my comments, and note that, even if they irritate some, I likely won't be around this weekend to respond.
I take great issue with saying that some kids were just born to use ASL. I say this because Rachel was born a very visual child and didn't get her CI until 2 years 8 months. Yet, today, she is a hearing, speaking young adult. What it boils down to to me are parental goals and knowledgeable professionals guiding those parents properly, albeit with parents doing their own research and not taking the word of the professionals as gospel. We never started using ASL with Rachel because we didn't want that to be her primary means of communication, and so ASL didn't become her primary mode of communication. Had we started, I know that she would have taken off with it, and I'd likely be sitting here today telling you that she was a child who was born to use ASL. However, the fact is that, barring severe apraxia or other similar issue, all deaf children are born with the capacity to learn to hear and speak with proper amplification if feasible or a CI. If we, as parents, start out with this as our primary goal and jump in immediately with a good Cert. AVT or a good auditory oral program, I believe that it can happen. I have read time and time again on the cicircle parents posting that their children were just not born to be oral, that they prefer to sign rather than talk. However, that came about because of a decision made first by the parents to introduce sign and continue with it rather than phasing it out once the child got a CI.
In the case of the original cicircle post, where the child is now 6 years old and is not speaking much, in some ways it is too late. This to me was a clear case of professionals who misled and misguided parents. I have never heard of a CI team telling parents they would not implant a child unless the child was in an ASL program. Why they would say that is totally perplexing. All CI teams that I have encountered say the exact opposite. The CI is a tool to enable a child to learn to hear and speak. Why implant a child, though, if you are not then going to give them the training to use that tool? It makes no sense.
So, my response to this whole discussion is not to sit back and say it's okay. Your child was just meant to be a signer. Rather, I would say that parents made that decision for the child, and, if they're okay with that, then that is fine. If they are happy and the child is happy, then that is okay for that family. However, to come back a few years later after making the decision to focus on sign and then say that their child is just not an oral child and isn't experiencing the same success as other CI children is something that doesn't fly. While hindsight is nice, at this stage in pediatric implantation, enough is known and out there that parents should have the information to set a goal for their child and then follow the appropriate path to attain that goal.
Thanks for sharing.
This story is an example how CI/Pediatrics so
called experts need more understanding how ASL does not hinder English development and speech development.
As the child chooses a preferred use of language, it means it is natural to her.
I am just amused how they just attempted to redirect the child's language path just because there is a change in hearing. Children getting CIs are like immigrants living in America (especially in the late 19th century), they expect you to drop your language and speak English.
Unfortunately, it is not the first time that has happened since a mother in Nebraska reported that she is to remove her child from an ASL environment just because her child got a CI.
Well, that's interesting. Like Barb Digi's comment regarding the immigrants who came in America during the 19th century.
Many reporters, i.e., in the olympic games, have spoken in english and speak with athletes who barely speak in english nowadays.
That's :-/ .
It might be parallel situation you stated in this blog.
White Ghost
P.S. I am eager to learn about the Pain in the Pump in Europe. I'm bum.
That was heartening that this parent wholeheartedly understands and supports her child in developing along the path she is doing best in.
However, it was unprofessional and misguided for that AVT person to require her to drop the ASL or she wouldn't get the training needed with CI's. That, to me, is totally estupido.
This parent should fight for all possible avenues of communication to be included in her child's training, no matter which one the child is preferring at this time. Eventually the benefits of all methods will show up to some extent.
And don't let anyone make you feel guilty or anxious that you are not restricting your child enough, as some parents here are advising. No child should ever be restricted in any way of learning.
Hearing loss comes with two things, amount of hearing and speech-auditory perception. The area where everyone has to be awary of, speech-auditory perception. Sometimes no matter how much speech - avt training a child gets, it turns out not really benefitting because of lack of perception. CI or anything does not always fix it.
For more information about speech perception, see
Speech auditory perception
As you read on, it is vastly interesting and complicated. It did mention that earlier a child gets implantation, better outcomes this child will have. It does not mean every child will have outcomes needed to be considered a successful implant wearer.
As opposed to what AVT said, the World Federation of the Deaf said:
http://www.wfdeaf.org/news.aspx#48
“Sign languages are the origin”
"The last plenary session of the 15th Congress of the WFD: "Sign Languages: Fraternal Languages," was headed by the prestigious researcher from the University of Alicante, Ángel Herrero.
The Professor was in charge of inaugurating the Sign Language Council. Herrero stated that sign languages are innate, irreplaceable and far more accessible than oral languages, and qualified them as real instruments to transmit culture and knowledge."
Interesting is that sign languages are innate which means Deaf children are born with it that seems natural for them to sign. To try to stop a child from using ASL is not recommended since there are far off more benefits when using ASL.
It is not true that "all deaf children are born with the capacity to learn to hear and speak with proper amplification if feasible or a CI!" I came from a Deaf family, grew up in a Deaf community, and now work at a school for the Deaf and I have seen it all. I have seen too many Deaf people attempting to hear and engaging in speech training programs all their life and still, they are not able to...it is not ALL but SOME.
For those who did not use ASL when growing up and not being successful with listening and speaking tend to fall behind from academics and language development. If they have used ASL, they would not have this issue. This statement made by Melissa is too dangerous and misleading to believe that ALL Deaf children can speak and listen although advanced listening devices are available.
Bilingual approach is working for those who use ASL as their primary language and to learn English (written and spoken when applicable) has become much easier. Please visit deafbilingualcoalition.com for more information on research.
One more last thing, to use ASL doesn't mean it will impede spoken English! When will they ever get this in their heads??
I don't believe for one second that any human is born with the lack of propensity for spoken language. The human body is made in such a way that not only do humans desire communication, but their bodies are designed for oral communication. Baring a throat/oral motor or brain disability, all children-- deaf included-- have a propensity to learn to speak. Now, if parents are not guided toward cochlear implants or hearing aids, and are not provided appropriate listening and speaking practice very early, then the child DEVELOPS the use of manual language and becomes a child who will not be as able to easily use spoken language. There are animals which do not have the development of vocal cords and do not use spoken language; humans are not one such animal. Unless the child has a malformation or brain disability, she is just as able to speak as any other child.
It's a parent's choice whether to utilize signed or manual language. Sometimes the choice is out of their hands to some degree if they adopt later, or are uninformed about hearing loss for years, etc. But the fact is that if a child can learn language, and they have vocal cords... they can learn spoken language. There are some studies which refute the concept that deaf individuals are more "visually" oriented than hearing individuals in general. They may USE their visual sense more as they grow older, but they don't get born with a special "deaf visual" ability, nor do they possess a higher ability to see than hearing people.
In most cases of parental choices, it's important for the parent to own the choice and know that they have made the decisions which will best serve their children, since children not only take their cues from their parents, but will spend their entire lives living with the education choices and upbringing provided by their parents. This family has chosen manual language, and are contented with their choice, but I do not believe that it is the daughter's choice as much as it is related to key components of her history: when she was implanted (as well as continued vigilence in mapping), the approach chosen from day 1 when they realized that she had a hearing loss, the continued education in a "deaf educational" setting and continued parental choice to use manual language predominantly.
I completely agree with my mother's and anonymous #9's points.
I want to point out that it IS possible for children as old as 6 years old to learn to hear and to speak. Parents just need to be guided CORRECTLY and be provided with the right information. I have a friend who was born profoundly deaf and was raised with TC. She did not receive her CI until she was 11 years old, and she is the same age as me today. She is able to hear and speak well as someone who was implanted late. Of course her hearing and speech is not as good as me and others who were implanted at the age of three and younger, but she can still have conversations easily in very minimal background situation and her speech is still comprehensible. She is a success for someone who was implanted at the age of 11 years because of being provided with the correct guidance. I recently received an e-mail from a CI user who is in her 20's, and she started out with ASL, and received her CI at the age of 5 years old. As soon as she received it, she had intensive speech therapy and is not only communicating well with the spoken language, but also she can sing! I can go on with more stories like these people. So, what I'm saying is that it's not too late for this child to learn to hear and to speak. Of course she's not going to be able to pursue "perfect" hearing and speech because of the age of implantation, but she can still produce comprehensible speech and some good hearing skills.
"I would think that even if she learns to hear and make sense of approaching cars, or someone approaching from behind, that would be reason enough to give a child a chance to hear...regardless of how well they ever speak."
Hi, regarding to Val's comment, I don't think it is a good idea to implant a deaf child simply because you are worried for their safety and if they may get hit by a car. It is important for each parent to teach their deaf child to look both ways before crossing and to be alert when riding bicycle on the street or whatever. We have eyes and we can use our eyes to alert incoming danger. It is same for hearing children. I get tired of parents thinking that they need to implant their deaf child so that they can protect them from danger which isn't true.
It is very unfortunate that many parents tend to think CI is immediate answer and that they don't need to learn ASl to communicate with their deaf child. Where I work at a school, ONLY one deaf child has a parent that uses ASL and he is very advanced in communicating with others while others cannot really express themselves very well. There ought to be an court order that all parents need to learn ASL to communicate with their deaf child.
Just to give you all a different perspective, what Melissa says holds true for the opposite. Gage didn't "take to" signing just as some kids don't "take to" being oral. From birth he was auditorily stimulated, not visually. When I tried to introduce signs his brain was already operating auditorily. At age three he wasn't interested in changing his communication mode. Luckily he was soon after implanted and developed good speech soon thereafter...even though he didn't have great speech until age four and a half (one year post ci). Before his implant, he mostly made noises and had some unintelligible speech, but did vocalize. You can probably find more on the "auditory brain" by reading some Carol Flexor books, AVT & Audiologist. This is part of the reason they say it's better to implant at a young age to stimulate that part of the brain, if you are choosing the oral route. And I will say as others may have mentioned, sometimes there are other underlying issues that may prevent progression in either mode...visual impairments, and as mentioned on the circle ( I went back and read a couple of posts) abuse could contribute to lack of progression, parental dedication, etc. Had Gage been doing sign from the beginning and not progressed verbally post ci at age four or five or six, I would have kept right on with the signs. Our case is just the opposite sort of.
I posted this for the specific reason of looking at each Deaf Child as an individual with different needs and different paths. I usually present the perspective of how a deaf child, despite being deaf, "chooses" speech and gives signs (no pun intended) of wanting to speak. This post by another hearing mother demonstrated how she "listened" to her child's needs, which were geared towards ASL.
The whole point is to raise a happy, well-adjusted child, which is no easy task. Hearing mothers do listen, observe and choose based on their children's needs, whether that be ASL or otherwise. In my case, it was otherwise.
Good to see ya, Barb. I greatly appreciated everyone's comments. I'm just really tired, I've been out since 9 am and I need to go to bed. Hugs to all, Jodi
That is a wonderful posting, Jodi. I do agree that each child is different. Not every child is a visual or auditory learner. A CI does not always equal AVT or a deaf child does not aways equal ASL. It depends on the child and what capacity they learn better in.
I am a auditory learner. I don't have the focus for visual. Don't ask me to watch, give me the sounds. My child is the same. She also has the ability to remember anything if she hears it once.
Once a parent, child and educators understand the learning styles then the best form of language development can take place. We really have to focus on the whole child. The self-esteem is just as important as the communications. Friendships and peer interaction is as important as grades.
There are no test data or progress monitoring to measure the whole child. It is very important that parents always check and work with the child to make sure that the whole child is not lost in the battle of "correct educational practices."
I wasn't planning on commenting but after reading a few other comments I wanted to give a bit of my input.
Melissa: had you begun using ASL with Rachel she would have become a visual learner and then the speech would have followed since she had the ability to speak. Being fluent in ASL does not hinder speech development. I do not believe, for a minute, that anyone is born to use ASL or born to use speech. Speech comes naturally to those who have the ability to speak (hearing people).
Melissa, you say "all deaf children are born with the capacity to learn to hear and speak with proper amplification.." is that an assumption you're making? It must be because if what you say is true then my mother and father should have been able to hear and speak with proper amplification. Hearing aids did nothing for them (a bomb could go off in the air above them and they'd never hear it) and if CI were available to them they would not have been candidates because they both had hearing loss of over 110 db. My mother was limited to being "oral" until she met my father and learned ASL...then she blossomed. She was sent to oral school where she failed miserably and dropped out. She never could have meaningful dialog with her parents...all conversations were kept to minimal because her parents refused to sign. Whereas, my father succeeded in deaf school, his 2 brothers were also deaf and they were sent to NY school for the deaf early on where they fully participated and excelled in sports, scholastic and social circles.
you also said "...child is now 6 years old and is not speaking much, in some ways it is too late.." sounds like another assumption you're making because this is just not true. At the age of 6, if this child has the ability to catch on speech with whatever training she could get, she can succeed...this will depend on her ability to speak. Not every deaf child has the capability to speak.
I applaud the parents for taking a stand and recognizing their child's strength and weakness. What appears to be more important is to go on with the child's strengths and focus on her education and social well being. If at some point in her life she or her parents are interested in pursuing speech training...it can happen and it is never ever "too late." No one should ever be able to compare one child with another because no 2 deafness are alike.
So if one receives implant at later age...sure, it will take longer to perfect speech, if at all. Again, no 2 are alike.
I fail to understand when parents think or agree with other "experts" and remove their child from signing environment or stops using sign language when the child is implanted with CI. How can not having the best of both (signing and speaking) be harmful to the child?
I think this is a wonderful posting and great opportunity for dialog. Everyone has such diverse input but I see one commonality, which is the focus should be on the whole child.
It is hard to say this or that will work because there are many deciding factors (family involvement, proximity to schools and services, being informed, support group, and so on...) that are equally critical.
My name is Melissa and I was the one who orginally posted my story. First of all, we were not misinformed by any professionals. Our audiologist and Speech Language Pathologist explained exactly what our options were. They stresssed amplification and learning to listen. Our daughter was only moderately hard of hearing at the time. We started speech and continued using sign language. (We had been using baby signs with her long before she started to lose her hearing). She NEVER was interested in learning to speak. From our hearing tests, she gets great benefit from her aids. She can locate sound, identify all enviromental sounds and can parrot extremly well. But she doesn't use spoken language for communication. What would have happened to her if we had NOT used ASL what would have happened? Would she just be unable to communicate? Would she have no language at all? To us that was UNACCEPTABLE!
Melissa J-- I really admire you for listening to your child! She does indeed sound happy.
The "experts" don't always know best.
Smiles,
Kim
Melissa...Thanks for speaking up and adding a couple of details, fundamental details...*smile* Jodi
Melissa J-
You are obviously an amazing parent for following your daughter's cues and above all- giving her language. Maybe she will eventually learn to speak - maybe she won't. What matters is that her brain has learned language and that makes all the difference. It is unfortunate that there are medical professionals and parents who are pushing the myth that signing is detrimental to the deaf child when the opposite is true. I hope you continue to share your story because it is inpsiring to see a parent as caring as you.
Melissa J.'s daughter is speaking...with her hands that is!
My only insight is that all children are different. Some deaf kids are just not able to learn to speak and listen exclusively, no matter how much we want it.
This nailed it right on the head. You are a rocking mom Melissa J!
Post a Comment