It it really the deaf/Deaf community?

[vallee]

And a good role model that a child can relate to their own life and experience is the one that will have the greatest impact. I did not say that deaf children should not have hearing role models. What I said was, they also need to have deaf role models in order to be able to relate those role models directly to their life and their experience.

Let me ask you a question, vallee. Did you not tell us a while back that you were making an attempt to make a connection with the deaf community in Nashville as an adult?

Yes and I am making connection with deaf individuals with CIs. I tend to be drawn to the group I have the most incommon with.

 

[jillio]

Let me jump in here with a question...

Btw, I agree with you both about atitudes and what not, but having said that...

Where does that atitude start? Does it start with a pre-conceived notion that the parent wants their child to be apart of the hearing world, and therefore they seek out advice from that vantage point or does it start with the medical professional that says if you want your child to fit in, you must do this, that, or the other, to ensure your child's success in the hearing world?

My opinion, both professional and personal, is that the attitude oringinates within the parent. They then seek out, and pay attention to, that advise which validates their internal attititudes, and reject that which does not validate it.

 

[vallee]

And now you are feeding into that very justfication. BTW, my experiences did not end 20 years ago, they only began there. They continue today. And when one doesn't see anything changing in that 20 year span of experience and interaction, it is indeed valid. You are simply validating the "My child is different because the technology has changed." argument that so many hearing parents use. As I said in my OP, technology has changed, but the soul and the needs of the deaf child have not. Perhaps the issue is not one hearing parent finding another that can understand them, but of creating hearing parents that better understand the experience of their deaf child.

Just because you view your experiences as vaild other parents might not. The same goes with my experiences. Other might not view them as valid. Not saying they are, just what others view. Technology has changed and the choices available have changed. My own mother said if the technology was available as it is today, she would have implanted me. So it has changed.

 

[jillio]

Yes and I am making connection with deaf individuals with CIs. I tend to be drawn to the group I have the most incommon with.

So, shouldn't we offer the same opportunity to our children? You are drawn toward affiliation with deaf adults with CI, not an all hearing environment. If it satisfies a human need in you, why wouldn't it serve to satisfy a human need in a child? That is the whole point. In order to provide that child exposure to others that share common characteristics, it is necessary for a hearing parent to first admit the difference, and then intereact with others who share their child's difference. They have to step out of their comfort zone of what is the same for them. The same for a hearing parent is not the same for a deaf child. The parents are the adults. It is up to them to facillitate this interaction for their child's sake.

 

[vallee]

My opinion, both professional and personal, is that the attitude oringinates within the parent. They then seek out, and pay attention to, that advise which validates their internal attititudes, and reject that which does not validate it.

If a parents reads this thread, what do you want them to get from it?

Just because a parent pickes a different path for their child when you picked for your son, if they put in the energy that you did, how is it the wrong path?

 

[jillio]

Just because you view your experiences as vaild other parents might not. The same goes with my experiences. Other might not view them as valid. Not saying they are, just what others view. Technology has changed and the choices available have changed. My own mother said if the technology was available as it is today, she would have implanted me. So it has changed.

That doesn't show that anything has changed. Your mother's attitude then was toward oralism, and if she had to do it over again, she would still choose oralism. You very post states that. She would just change the method she used to pursue the goal. The goal remains the same.

I have already stated that technology has changed. That is not the issue. The issue is that the soul and the needs of the deaf child have not changed. Having a CI does not change the fact that they have very real, very universal, and very real needs that having a CI does not address.

 

[Oceanbreeze]

Yes and I am making connection with deaf individuals with CIs. I tend to be drawn to the group I have the most incommon with.

This is human nature. We tend to naturally gravitate to that which we are most comfortable with, but I think what Jillio is saying is that in her opinion, one must step out of their comfort zone in order to ensure that their child is getting his or her needs met.

I also agree with that. If I am blessed with a deaf child, I think it would be encumbent upon me to make sure my child has role models that he or she can look up to. For a hearing child, that's not such a big deal, but for a deaf child it would be crucial to provide them with a nurturing environment that they can thrive in. If my family was Deaf of Deaf, it wouldn't be as crucial, because there would be several members of the family who were deaf, but in this family, it would be absolutely crucial for me to seek those role models outside the home since to my knowledge, there are no deaf members of my family.

 

[jillio]

If a parents reads this thread, what do you want them to get from it?

Just because a parent pickes a different path for their child when you picked for your son, if they put in the energy that you did, how is it the wrong path?

I would like to have them understand that it is necessary for them to confront their own bias and fear of deafness, and make every attempt to overcome those, rather than denying their existence and sequestering their child from a group of people that can provide a perspective the hearing parent can never provide...what it is to be a deaf child. I would like them to develop some degree of self honesty about their own feelings and reactions to having a deaf child, rather than burying them deep inside so that they are projected onto the child. I would like for parents to come to terms with their own issues in order that those issues do not have a negative impact on their deaf child.

This has nothing to do with choosing a CI or not choosing a CI. It does have to do with self honesty of both those things that we see as acceptable and not acceptable, and understanding that polarities occur in life and in feelings.

I have yet to see a hearing parent on this forum admit that they were devastated when they discovered that their child was deaf. Do I believe that they did not experience any negative emotion as a result of the diagnosis? Most certainly not. I believe that they fail to admit to it because they believe that it is not acceptable to say, "I was devasted. I did not want a deaf child." They attempt to hide those negative feelings not just from everyone else, but, most importantly, from themselves. As a consequence, they never deal with them, and their whole focus is in projecting that onto others.

Well, let me be the first hearing parent to say it. "I was devastated when I found out my son was deaf. I did not want a deaf child, I did not plan for a deaf child, and I did not know what to do with a deaf child." That is a normal human reaction, and one that all hearing parents have. The question is not whether they have such a reaction, but whether they can honestly admit to that reaction in order to deal with it.

I fully admitted that I did not know anything about what it was to be a deaf child. That is why I turned to the people who could teach me about that experience. Deaf adults who had been deaf children. It would have been much easier to pretend to be superhuman and to have all the answers than it was to step outside of my comfort zone and reach out to others for help in understanding my own child. But would it have benefitted me or my child to create a false sense of security and denial, and have that be the very foundation of not just our relationship, but his self image, as well? Decidedly not.

Hearing parents need to let go of the obsession of being judged as a "good parent" or a "bad parent". The issue is not one of good or bad, but of being adult enough to put your own feelings aside in order to take the perspective of your child. It's called empathy, and if we don't develop it for our own children, who can we develop it for?

 

[jillio]

This is human nature. We tend to naturally gravitate to that which we are most comfortable with, but I think what Jillio is saying is that in her opinion, one must step out of their comfort zone in order to ensure that their child is getting his or her needs met.

I also agree with that. If I am blessed with a deaf child, I think it would be encumbent upon me to make sure my child has role models that he or she can look up to. For a hearing child, that's not such a big deal, but for a deaf child it would be crucial to provide them with a nurturing environment that they can thrive in. If my family was Deaf of Deaf, it wouldn't be as crucial, because there would be several members of the family who were deaf, but in this family, it would be absolutely crucial for me to seek those role models outside the home since to my knowledge, there are no deaf members of my family.

Well said.

 

[Tousi]

Let's go back to the point where, upon discovery that parents have a deaf child, the medical profession which, by and large knows nothing of deafness beyond knowing of a hearing loss, and makes it's recommendations (whatever those are) to the parents who are already bewildered. What then, since there's pretty much no advocacy for the deaf child at this stage?

Not sure if I am on topic here....if I am, then let's say some parents come here, looking for advice, help and a lot of times they hear stuff from those of us who say things we might not dare say in real life. The parents become more confused, insulted, etc, maybe even agree with some of the things some of us say.

 

[jillio]

Let's go back to the point where, upon discovery that parents have a deaf child, the medical profession which, by and large knows nothing of deafness beyond knowing of a hearing loss, and makes it's recommendations (whatever those are) to the parents who are already bewildered. What then, since there's pretty much no advocacy for the deaf child at this stage?

Not sure if I am on topic here....if I am, then let's say some parents come here, looking for advice, help and a lot of times they hear stuff from those of us who say things we might not dare say in real life. The parents become more confused, insulted, etc, maybe even agree with some of the things some of us say.

The medical community does at this time, and will continue to do so as long as they are a medical community, see deafness from a patholocial perspective. Very, very few see the deaf individual from a hoslistic perspective, and therefore, their focus is narrowed to the deafness, not the development of the child as a whole.

When a diagnosis comes in, the parents, as well, bcome focused on the deafness, because they see that diagnosis as being the singular event responsible for changing their idea of what life is. It is threatening on many levels. Add to that the insecurity of not knowing what to do with a deaf child, of looking for answers, and the very parental need to do away with that which threatens our offspring's well being and happiness. We, as hearing parents, start off feeling that the diagnosis has threatened out child's well being and happiness, and therefore, set about doing anything we can to make it go away and leave our child alone. Been there, done that, and experience has shown me that this is a universal experience.

We need not just child advocacy at this stage, but parental advocacy, as well. Parents need to be given permission to walk through the myriad of emotions they will experience instead of being pushed to make decisions before they fully understand the problem. Parents need to be told that it is okay to be angry, to be frightened, to feel that life is unfair. Then they need help in understanding that those are their feelings, and should not be projected onto their child, or onto those that can be of assistance to their child. Parents need advocacy to deal with their issues so that they will not forever be operating from a "OMG! I have to fix this for my child!" perspective. The deafness doesn't need to be fixed. The child doesn't need to be fixed. What needs to be fixed is the parental attitude, often very deeply buried and denied, about having a deaf child. So yes, I am a firm believer in advocacy for parents, as well. I would like to see every hearing parent who places a deaf child in early intervention receiving counseling for themselves. Help them focus not so much on what is wrong with the child, but what is wrong with the way they perceive that child based on earlier experiences of stereotypes that have nothing to do with the child standing before them.

And there is added benefit to advocacy for parents. The more parents are advocated for, and helped to understand themselves and their feelings, and how those affect the decisions they make for their child, and the consequences the child is ultimately responsible for, the less we need to advocate for the kids. The parents will be able to do it.

 

[vallee]

That doesn't show that anything has changed. Your mother's attitude then was toward oralism, and if she had to do it over again, she would still choose oralism. You very post states that. She would just change the method she used to pursue the goal. The goal remains the same.

I have already stated that technology has changed. That is not the issue. The issue is that the soul and the needs of the deaf child have not changed. Having a CI does not change the fact that they have very real, very universal, and very real needs that having a CI does not address.

When my mom reached out to the deaf community when I was three and was rejected, what would have happen if she wasn't???? That is the universal question. I'm sure my educational environment would have been different. I have already told you my mother's goal, don't read into your ideas.

Technology is the issue. That is the key differences from when you raised your son. The choices are different. Why is it hard to believe that parents make choices that might be different then yours, but they did the research and made a different decision. Life is different.

 

[Daredevel7]

Jillio, are you writing essays???

I think my parents are a good example in the differences in parents' reactions. Both of them were very upset when they found out that I was deaf. My dad took it really hard, he didn't even want to tell anyone in the family that I was deaf. My mom quickly got over it and went into "practical" mode, gathering as much information as she could, took me to a deaf school to get assessed, etc. If I learned ASL, I am pretty sure my dad would be against it. I doubt he'd try to learn to sign, but my mom definitely would have. It just so happened that I was able to communicate well with speech reading at a young age, so my mom was happy that I could develop language at a normal rate and my dad was happy that I could talk and "be normal". I've personally known two different type of parents, and if I try to imagine what they would say here in AD. My dad would probably have ignored everyone, basically saying "You don't know anything". My mom is pretty level headed, so she would talk to people about things. However, she doesn't take people's crap easily. If someone was being an ass, she will refrain from talking to that person. If enough people are being asses, she will eventually stop going on AD or at least get an email address from one or two people she found who have similar conditions as me and personally ask them questions. So in either case, AD isn't very appealing to them if those few "ass-y" people keep monopolizing the thread/conversation.

 

[vallee]

Let me jump in here with a question...

Btw, I agree with you both about atitudes and what not, but having said that...

Where does that atitude start? Does it start with a pre-conceived notion that the parent wants their child to be apart of the hearing world, and therefore they seek out advice from that vantage point or does it start with the medical professional that says if you want your child to fit in, you must do this, that, or the other, to ensure your child's success in the hearing world?

Why is that if a parent gives a child a CI they want them to be part of the hearing world? Is it that way for a hearing aid? The access to sound does not make one hearing, it makes them access to sound. I have experienced no sound, some sound, hearing aid sound, and CI sound. They are all very different and wrong to judge parents for wanting to give access to sound to their children.

 

[jillio]

When my mom reached out to the deaf community when I was three and was rejected, what would have happen if she wasn't???? That is the universal question. I'm sure my educational environment would have been different. I have already told you my mother's goal, don't read into your ideas.

Technology is the issue. That is the key differences from when you raised your son. The choices are different. Why is it hard to believe that parents make choices that might be different then yours, but they did the research and made a different decision. Life is different.

How exactly, was your mother rejected by the deaf community? You did not, by your own admission, even use hearing aids at the age, so you would not have been using any technology that would have created rejection. IF, indeed, whe was rejected, there has to be another explantion.

And, no, technology is not the issue. Not in this thread. You will need to visit the CI and HA thread if you wish to focus on the technology. The issues in this thread are cultural and psycho-social-emotional in nature.

 

[jillio]

Why is that if a parent gives a child a CI they want them to be part of the hearing world? Is it that way for a hearing aid? The access to sound does not make one hearing, it makes them access to sound. I have experienced no sound, some sound, hearing aid sound, and CI sound. They are all very different and wrong to judge parents for wanting to give access to sound to their children.

Again, vallee, this is not about CI. There are many hearing parents of deaf children without CI that isolate them from the deaf/Deaf community, as well. That is what we are discussing. Why hearing parents refuse to expose their children, and to become involved as a family with a culture that has things their child will never be able to get elsewhere. I refuse to allow this to descalate into a right or wrong argument in regard to CI. I will not allow any poster to hide behind the CI as a way to avoid the real topic.

 

[vallee]

How exactly, was your mother rejected by the deaf community? You did not, by your own admission, even use hearing aids at the age, so you would not have been using any technology that would have created rejection. IF, indeed, whe was rejected, there has to be another explantion.
And, no, technology is not the issue. Not in this thread. You will need to visit the CI and HA thread if you wish to focus on the technology. The issues in this thread are cultural and psycho-social-emotional in nature.

Why is it so hard to believe my mother was rejected by the Deaf Community? Why are you questioning the rejection? I also explained it to you many months ago. I was not using technology because the dr believed I had nerve damaged and a hearing aid was not usable. The doctor suggested deaf school and when mom reached out, she was rejected.

 

[vallee]

I have noticed a pattern here and elsewhere that leads me to ask a question. I would like to have honest answers, but will not accept name calling, bullying, or insult in this thread, and will promptly report any posts that contain such. I would also remind everyone that honesty sometimes can be uncomfortable, so if you can't stand someone being honest, it is best that you don't participate in this thread. That said, here goes:

I have noticed on more than one occasion that hearing parents of deaf children have accused the deaf/Deaf community of being unreceptive toward their CI implanted child.I have seen hearing parents accuse the deaf/Deaf community of trying to set their deaf child apart based on the fact that they are implanted. It always, in any discussion of implantation of deaf children, comes down to, "The Deaf community has rejected my child because I chose to give him/her the gift of sound!" The Deaf community, in the end, is always blamed for the lack of contact with other deaf/Deaf that the child has.

I have been around long enough to remember the early days of the CI, and will agree that the deaf/Deaf community has not always been open to the idea of implantation...either for adults or children. I have also seen this attitude change and become more and more accepting toward those that make the choice for themselves or their child. I can honestly say that I do not know a single deaf individual that would, today, reject a deaf child or that child's hearing parents, simply because that child has a CI. I do not know a single deaf individual today that would reject another deaf adult simply because they had chosen to undergo a surgical procedure to provide access to sound, even if it is not a personal choice they would make for themselves. Yet, I continue to hear hearing parents of deaf children claim that the deaf/Deaf community rejected them because their child was implanted.

Here is my question: Is it really the deaf/Deaf community that is rejecting hearing parents and deaf children with CI, or is it the hearing parents themselves who are continuing to set their child apart from the deaf/Deaf community?

In discussions of education, I am still seeing hearing parents make statements such as, "Well, the experience of a deaf adult does not apply to my child, because my child is different. He/she has an implant. It is not the same as it used to be." In discussions of language, I am still seeing hearing parents say, "Well, my child no longer needs sign language, because my child now has a CI, and he/she can hear more than children with HA could ever hear." In discussions of the psycho-social issues of growing up as a deaf child in a hearing environment, I am still seeing parents make the statement, "Well my child will easily integrate into the mainstream because my child has a CI. Better hearing and better oral skills will mean that he/she will not experience the same problems as an adult who grew up without a CI."

For 20 years, I have been hearing these very same comments come from a wide variety of hearing parents of implanted children. And for the same 20 years, I have seen the deaf/Deaf community try to reach out to these parents, relate the painful and negative experiences they have lived through and overcome, only to see these hearing parents of implanted children reply, "Well, I'm sorry, but it will be different for my child." What I have not seen, over the past 20 years, is a great deal of difference in the educational achievement, the linguitic competency, or the psycho-social well being of these kids. I have not seen that it is different for the deaf child with a CI any more than it is different for the deaf child that grew up with a digital hearing aid instead of an analogue.

I see the deaf/Deaf community wanting to accept these kids, and to give these kids a connection that will make a difference in their lives. I see the hearing parents rejecting that with the same pattern of thinking that has continued year after year after year. "So what if my kid is deaf. Its going to be different for them. I am going to to everything in my power to make sure that they have all the advantage that technology can offer, so their experience will be different." I see the deaf/Deaf community reaching out to these children and their hearing parents. I see the hearing parents pushing the deaf community away, believing that what they have to offer is not something their child needs because the same as hearing parents for years and years have wanted to believe, "My child is different." The pattern is obvious, and it is not new. It is the same pattern that has always been there, from the days of analogue HA to digital HA to Cochlear Implant.

What hasn't changed very much at all is the experience of the deaf child. We have seen more and more deaf children with CIs mainstreamed, but we have not seen a decreased need for accommdations that deaf children have always needed in the mainstream. We see deaf children with CIs growing into deaf adults with CIs, but we have not seen a decrease in the number that develop close and abiding friendships with other deaf once they are out of their hearing parent's home. We have seen deaf children with CI learning sign language as adults because their hearing parents insisted on an oral only environment, and we are still seeing reports of them saying they wished they had been given ASL as children. We see deaf children with CI gowing up and getting married, and we still continiue to see that a deaf adult (no matter what technology they use) will still be more likely to marry another adult with hearing loss than a hearing partner. We are seeing deaf children with CIs graduate from high school, despite having been mainstreamed their entire educational career, with literacy rates that fall well below the norm for the hearing students. We see deaf children with CIs grow into deaf adults with CI and still remain underemployed. We see deaf children with CIs enter into their adoloescent years unprepared to complete the transition of separation from the parent, and continue to experience social problems and relationship problems that destroy their self esteem and their sense of identity. We still see deaf adults that have been implanted for many many years that complain of being caught between hearing and deaf worlds, and not feeling as if they belong to either. They are still telling us that they do not fit with the hearing because, despite the advantage of a CI, they were never able to integrate with that group because they missed too much of what went on. They are uncomfortable with the deaf because they were never given the opportunity to associate with other deaf, to learn a visual language, to find the bond of being the same as those with whom they spend their time. As a consequence, they are not "different" than one group, and "alike" another. The feel different with both groups and where ever they go. We see deaf children with CI growing into deaf adults who have no idea what their career options are, because they have never been given the opportunity to observe successful deaf role models in all walks of life. They only know that, because they have a CI, they still can't do some of the same things that their hearing peers can do, but see it as more restricting on their choices because they have never been given an example of what a deaf adult can do, and what deaf adults all over the country do, on a daily basis.

Why is this continuing to happen? Because hearing parents are saying, with ever increasing numbers as the rate of childhood implants go up, "My child is different. My child doesn't need the deaf community, because my child will function, in all ways, the same as a hearing child. My child will have better speech skills. My child will receive a mainstream education. My child will grow up with hearing kids. My child will be different from all the other deaf children that have ever grown up before!"

So, folks, is it the deaf children with CIs that are rejected by the deaf/Deaf community, or is it the hearing parent that sets the deaf child with a CI apart from the deaf/Deaf community? After 20 years of observing this phenomena, I can say, as a hearing parent with a deaf child, and someone trained to observe and see the underlying motivations behind individual behavior, that it is not the rejection of the deaf/Deaf community, but the continuation of the hearing parent that sets the deaf child with a CI apart as being different somehow based on advanced technology. The technology used to provide sound may have changed, but the soul and the needs of a deaf child have not. They are still deaf children, and they are still experiencing the same struggles that deaf children had before the first implant was ever done. Parents simply have a new excuse for believing, despite the lack of change in the outcome, that their child is different. They have a new justification for keeping their child away from the deaf/Deaf community, despite it being the greatest resource they could provide their child. It is not the deaf/Deaf community that rejects. It is the deaf/Deaf community that is continuing to be rejected.

Thoughts, please. And, again, I expect honesty, but I expect civility in the process.

you can't discuss CI with out the technology, it is technology

 

[jillio]

Why is it so hard to believe my mother was rejected by the Deaf Community? Why are you questioning the rejection? I also explained it to you many months ago. I was not using technology because the dr believed I had nerve damaged and a hearing aid was not usable. The doctor suggested deaf school and when mom reached out, she was rejected.

I did not say that I did not believe it. I simply asked for more clarification on how she perceived that she was rejected and what attitudes she portrayed when attemptng to interact with the deaf community.

WHY you were not using technology is not the issue. The fact is, you weren't.

Are you telling me that your mother approached a deaf school about having you enrolled, and you were rejected for admission? That is quite a different story than cultural rejection.

This is a perfect example of the problem. I asked, politely, for clarification regarding your story of rejection. You saw something that was not there...disbelief and criticism. Therefore, you reacted defensively. Now that criticism or disbelief that you perceived certainly didn't come from me. I can assure you that was not my intent. So where did it come from? It came from you. The reasons that you reacted defensively don't have anything to do with me. They have to do with you.

 

[Oceanbreeze]

Why is that if a parent gives a child a CI they want them to be part of the hearing world? Is it that way for a hearing aid? The access to sound does not make one hearing, it makes them access to sound. I have experienced no sound, some sound, hearing aid sound, and CI sound. They are all very different and wrong to judge parents for wanting to give access to sound to their children.

I know that, Vallee. That is why it is very important for a deaf child to have that connection with the deaf community for the reasons you so stated. No matter which device they use, they will always be deaf and a deaf child should have the best of both worlds.

Having speech skills is good, but many parents stop there. They don't go that extra mild to learn ASL themselves or find role models for the child, so that child learns his or her native language. I've heard parents on this forum question.... "What if the parent doesn't know ASL?" Well, then that is where the deaf community comes in. If you expose your child to his or her language from an early age, they will learn it irrespective of his or her access to sound.

The child's well being doesn't begin and end with the ears or what's on them. The child's well being encompasses a whole list of things that parents don't always account for.