"Letting the Child Decide"

Ariakkas said:
umm...you need to update your info. Uncircumsized penises facilitated easier masterbation, this was seen as "dirty" to religious zealots, thus they cut off the foreskin to disuade young boys from masterbating.

america and israel are the only countries who circumsize thier young boys, other, less "clean" countries across the world have no problem with hygiene on uncircumsized penises.


we do it for cultural and traditional reasons




this is an honest question....how many "complications" or deaths have resulted from CI surgery? Ci surgery vs any other surgery? how does it compare in risk vs reward?
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Actually, I would suggest that you check with the American Academy of Pediatrics. Circumcision is performed on non-Jewish babies as reccommended for hygienic purposes. For Jewish children, it is a religious ceremony.

Unfortunately, they don't release stats on that. Just as they don't release the stats on the number of implanted individuals who are dissatisfied with the CI.
 
Cole's mom said:
So I am new to posting on this board. Our 19 mo old son has been implanted for 2 months and is doing wonderfully compared to the "experts". I wholeheartedly agree with your point Drew's dad, however, all the debate has given me pause in what the AV and oral experts say. I can understand why we should do all the AV therapy to give him the best chance with the implant, but what I can't figure out is the lack of willingness to expose and surround them with sign as well? Don't get me wrong, I didn't know 1 deaf person before we found out about our son 6 months ago, and all the choices are so overwhelming. Just speculating, but could part of it be that the people who descend on parents of newly diagnosed deaf kids are those who seem to be more of the oral and AV mindset, while the ASL and Deaf community seem to hang back and wait for you to approach them. Part of me wonders if it is because the healthcare industry (ie for profit) stands to benefit, while the Deaf community doesn't, therefore aren't as motivated to get to know new families and come along side them in the same way???
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Thanks for reaffirming that the oral only attitude is still prevalent in the CI community. This is a point shel and I have often brought up, only to be told by the CI zealots that we are wrong. Your experience confirms.

Secondly, doctors are trained to see deafness as a disease and something to be cured. They are trained to take that which is considered abnormal, and change it into what will closely resemble that which is considered normal. Thay is their entire focus, and therefore, if they have provided a procedure that produceds sound in some form, they feel that their actions have been warranted. Unfortunately, very few of them have any contact with the deaf community, and next to none are aware of the issues that plague deaf children.
 
Drew's Dad said:
I would have preferred that information be provided for us (especially right at the newborn screening), but that was not the case [no one wants to be the one to give the true diagnosis]. I would have preferred that people seek us out, either ASL or oral, but that did not happen either.
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I am curious how parents, like you, would like to be informed on the different aspect of deafness? What kind of information and experiences are essential to new parents of a deaf kid? What should seek them out? "Biased" people or professonials providing information without giving any opnions?
 
flip said:
I am curious how parents, like you, would like to be informed on the different aspect of deafness? What kind of information and experiences are essential to new parents of a deaf kid? What should seek them out? "Biased" people or professonials providing information without giving any opnions?
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Good question, flip. In my experience, I figured it was up to me to seek the inforamtion and the contact with Deaf people out--not their position to seek me out.
 
Cole's mom said:
So I am new to posting on this board. Our 19 mo old son has been implanted for 2 months and is doing wonderfully compared to the "experts". I wholeheartedly agree with your point Drew's dad, however, all the debate has given me pause in what the AV and oral experts say. I can understand why we should do all the AV therapy to give him the best chance with the implant, but what I can't figure out is the lack of willingness to expose and surround them with sign as well? Don't get me wrong, I didn't know 1 deaf person before we found out about our son 6 months ago, and all the choices are so overwhelming. Just speculating, but could part of it be that the people who descend on parents of newly diagnosed deaf kids are those who seem to be more of the oral and AV mindset, while the ASL and Deaf community seem to hang back and wait for you to approach them. Part of me wonders if it is because the healthcare industry (ie for profit) stands to benefit, while the Deaf community doesn't, therefore aren't as motivated to get to know new families and come along side them in the same way???
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U mean why the deaf community arent motivated to get to know new families and come along side them in the same way? What do u mean by that?

Why do the Deaf community hang back? Well..I think it is because we are unaware of which babies have been identified as deaf and where. Also, there are issues with confidentality or privacy laws so if deaf people were to go to every audiologist center to try to get info on families of deaf babies, wouldnt that be breaking the law? I know the offices wouldnt give out private info like that.

My work has a family intervention program and since I dont work in that dept, I am not sure how it works but they are trying to collaborate with John Hopkins CI center to allow them to be part of the screening process. As usual, the medical field is very very relunctant to let in any aspect of Deaf culture or deaf people be part of the screening process. Nothing new there..

My mom didnt know of any deaf community nor that there was such a thing as Deaf culture cuz nobody provided her with that info. She said when she brought up sign language for me, it was disregarded as a bad thing for me so she took their word for it. The only reason my brother was involved with the Deaf community since he was 5 was cuz he "failed" in developing adequate speech and lipreading skills and the public school where I went to didnt know what to do with him so they referred him to the Deaf school.
 
shel90 said:
U mean why the deaf community arent motivated to get to know new families and come along side them in the same way? What do u mean by that?

Why do the Deaf community hang back? Well..I think it is because we are unaware of which babies have been identified as deaf and where. Also, there are issues with confidentality or privacy laws so if deaf people were to go to every audiologist center to try to get info on families of deaf babies, wouldnt that be breaking the law? I know the offices wouldnt give out private info like that.

My work has a family intervention program and since I dont work in that dept, I am not sure how it works but they are trying to collaborate with John Hopkins CI center to allow them to be part of the screening process. As usual, the medical field is very very relunctant to let in any aspect of Deaf culture or deaf people be part of the screening process. Nothing new there..

My mom didnt know of any deaf community nor that there was such a thing as Deaf culture cuz nobody provided her with that info. She said when she brought up sign language for me, it was disregarded as a bad thing for me so she took their word for it. The only reason my brother was involved with the Deaf community since he was 5 was cuz he "failed" in developing adequate speech and lipreading skills and the public school where I went to didnt know what to do with him so they referred him to the Deaf school.
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I agreee with shel....the deaf community doesn't know you have a deaf child and would like to get to know more about the culture and the language unless you approach them and let them know.
 
Drews dad, Your'e experience sounds much different than ours. During the testing, we did a CT scan to see if we could see what caused the hearing loss, and it came back with very rare malformations, so we were immediately referred to a Ear specialist who also happened to be an impant surgeon, so we were pretty much started on the implant track right away. I do know what some of you are saying about the ABR not being entirely accurate. We tried some in the office with him awake, and we all knew they were not correct, so we did a sedatated one that came back profound. But all the behavioral audiograms showed right at 90 db loss. So truthfully, we were right on that border line for appropriate, but were told an implant would be better. We did aid for 3 months before surgery with no real vocal changes from our son. He had his first spoken word, "ball", within one week of activation, though. So I go back and forth between if the HA provided that good base that he could advance that quickly, or is the implant just that much better...who knows really.
My worry as a parent is that we are doing all that we can for our son, and I guess if at the end of the day, I feel like we are working on both ASL and oral, and letting him start to direct which he prefers when he is old enough, then I have done my job.
 
Shel and others, Regarding the Deaf community, yes I feel like they hang back. And practically, because of privacy laws and no notification you are right. We do have an early childhood program here that is great, but in our area, we are always told, "The program is here to do whatever you want it to do", while on paper that looks great. The other thing they say is they can't recommend one method or another and that when asked what we should be doing, it is up to us parents to decide. I like that idea, but as new parents in this role, WE HAVE NO IDEA WHAT TO DO! I have been kicking around with our regional coordinator the idea of a parents group for deaf toddlers. We live in that mix where it is an hour to the nearest major city to get all the great variety of families and educational facilities, and we are just not quite big enough to really have it here. I am starting to get involved as much as I can, in fact I am going to a panel discussion tonight with another parent from my community about educational styles and what our state offers, so I feel like I am trying...but we do have 3 other kids who love the school they are at, and have lives of their own. It is so hard trying to figure out the balance between changing everything about your family for the 1 kid that is different and making that 1 kid fit into the family he has!

I would have loved it, though, if a deaf adult had come to meet with us, or a parent of someone in our shoes. It does happen eventually, but it is hard for both sides I guess!
 
Cole's mom said:
Shel and others, Regarding the Deaf community, yes I feel like they hang back. And practically, because of privacy laws and no notification you are right. We do have an early childhood program here that is great, but in our area, we are always told, "The program is here to do whatever you want it to do", while on paper that looks great. The other thing they say is they can't recommend one method or another and that when asked what we should be doing, it is up to us parents to decide. I like that idea, but as new parents in this role, WE HAVE NO IDEA WHAT TO DO! I have been kicking around with our regional coordinator the idea of a parents group for deaf toddlers. We live in that mix where it is an hour to the nearest major city to get all the great variety of families and educational facilities, and we are just not quite big enough to really have it here. I am starting to get involved as much as I can, in fact I am going to a panel discussion tonight with another parent from my community about educational styles and what our state offers, so I feel like I am trying...but we do have 3 other kids who love the school they are at, and have lives of their own. It is so hard trying to figure out the balance between changing everything about your family for the 1 kid that is different and making that 1 kid fit into the family he has!

I would have loved it, though, if a deaf adult had come to meet with us, or a parent of someone in our shoes. It does happen eventually, but it is hard for both sides I guess!
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Strange that the program cant recommend anything but then again maybe they have encountered this kind of debate we have on here on AD about how parents want to raise their own children they see best fit so they probably have that policy to remain neutral. Can u ask them why do they have that policy of not being able to recommend methods?




Where do u live? I would have love to come and meet u and other families of deaf babies but like many parents, I have two kids and so many responsibilities so my time is limited to meet new people. If u live in my area, I have no problem meeting u. :) Like u said, deaf people have their own lives but there has to be events that u can go and meet them especially when it comes to events for children? If there are none maybe the deaf community there is so small? That's why I try to go to many events that involves children whether deaf or hearing. I dont have the time to go and meet every parent of newly diagnosed deaf children..that's why my work set up the family program and the staff go to home visits.
 
Thanks, but we are in Colorado. Denver is the city that I am referring to. And yes, we asked them that question many times over. TELL US WHAT TO DO, and they said that because it is controversial, and there is no crystal ball saying which kid will excel with which method, they can't recommend any certain method. We do have an ASL interpreter come to our house and work with our family, and she is great, but she is not Deaf. I have met parents of other younger deaf kids, but not really any Deaf adult. Please don't misunderstand. In no way am I blaming the Deaf community, I haven't really put our family out there yet, and to be honest, I am, and my husband even more so, intimidated by it. I think that as Deaf adults, wherever you are in the world, try and be as accepting of new parents as you can. Chances are very good that they have NO idea what they are doing, and are trying to feel this out for what they think is best. I think that there is a big perception of the Deaf community as being very closed off and hard to enter, so new parents seem to be afraid of that.

I have learned tons on this board, and will be thankful for all of your opinions, but so many seem to think that we parents are harming our kids. I really can say that most of us aren't trying to. I think that honest discussions are great, and back to the point of this thread, I still defend the decision to implant our son. BUT, the flip side is valid and needs to be heard and paid attention to as well. You as Deaf adults hold the real experience in your hearts and memory, and if we as new parents ignore that, we could be faced with tough questions to answer when our kids grow up.
 
Cole's mom said:
Thanks, but we are in Colorado. Denver is the city that I am referring to. And yes, we asked them that question many times over. TELL US WHAT TO DO, and they said that because it is controversial, and there is no crystal ball saying which kid will excel with which method, they can't recommend any certain method. We do have an ASL interpreter come to our house and work with our family, and she is great, but she is not Deaf. I have met parents of other younger deaf kids, but not really any Deaf adult. Please don't misunderstand. In no way am I blaming the Deaf community, I haven't really put our family out there yet, and to be honest, I am, and my husband even more so, intimidated by it. I think that as Deaf adults, wherever you are in the world, try and be as accepting of new parents as you can. Chances are very good that they have NO idea what they are doing, and are trying to feel this out for what they think is best. I think that there is a big perception of the Deaf community as being very closed off and hard to enter, so new parents seem to be afraid of that.

I have learned tons on this board, and will be thankful for all of your opinions, but so many seem to think that we parents are harming our kids. I really can say that most of us aren't trying to. I think that honest discussions are great, and back to the point of this thread, I still defend the decision to implant our son. BUT, the flip side is valid and needs to be heard and paid attention to as well. You as Deaf adults hold the real experience in your hearts and memory, and if we as new parents ignore that, we could be faced with tough questions to answer when our kids grow up.
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I will ask around and see if I can contact one of my former classmates who is a teacher at the charter school in Denver about parents of deaf children socials.

Here at my work, we are accepting of the parents and we send home flyers about deaf events that they can take their children to. Unfortunately, most of them chose not to because many of them are not interested in learning sign language and that is what angers many of us. We even ask them dont worry about not learning sign language but just to bring their children there and they said they get bored because they dont understand anyone. Those are the parents that really are showing that they think of themselves first. However there are plenty that are very much involved and nobody has bashed them as far as I am aware of. I think many deaf people out there still do not understand that just because parents decide to implant their children that means the parents want nothing to do with the deaf community so maybe some of that hostility is still there. Before joining this forum, I was 100% against CIs but my views have changed and I realized I was more of against the attitudes about Deaf culture and sign language are to be disregarded once the person gets a CI not the CIs themselves. Yea, that needs to be changed, I agree with u. It will take some time...
 
Cole's mom said:
I think that there is a big perception of the Deaf community as being very closed off and hard to enter, so new parents seem to be afraid of that.

I have learned tons on this board, and will be thankful for all of your opinions, but so many seem to think that we parents are harming our kids. I really can say that most of us aren't trying to. I think that honest discussions are great, and back to the point of this thread, I still defend the decision to implant our son. BUT, the flip side is valid and needs to be heard and paid attention to as well. You as Deaf adults hold the real experience in your hearts and memory, and if we as new parents ignore that, we could be faced with tough questions to answer when our kids grow up.
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Great to see you on here Colesmum and it's fantastic that you are trying to seek out the deaf community and improve on your signing skills for the sake of your son. It really sounds like you are trying to strike a balance and I think your child will grow up to appreciate that.

I as a deaf adult do not think you are harming your child - it's so obvious that you care deeply for your son. I know there are some here who have that view but views change over time and you have to understand that many of them have had painful experiences growing up mainstream without any support and without parental sensitivity to their challenges.

When your child reaches his teen years it's very probable that he is going to be very much like his peers - able to communicate bilingually. My nephew is a teenager and has grown up signing only, however most of his friends at his residential deaf school have both skills, even though they consider themselves culturally Deaf.
 
R2D2 said:
Great to see you on here Colesmum and it's fantastic that you are trying to seek out the deaf community and improve on your signing skills for the sake of your son. It really sounds like you are trying to strike a balance and I think your child will grow up to appreciate that.

I as a deaf adult do not think you are harming your child - it's so obvious that you care deeply for your son. I know there are some here who have that view but views change over time and you have to understand that many of them have had painful experiences growing up mainstream without any support and without parental sensitivity to their challenges.

When your child reaches his teen years it's very probable that he is going to be very much like his peers - able to communicate bilingually. My nephew is a teenager and has grown up signing only, however most of his friends at his residential deaf school have both skills, even though they consider themselves culturally Deaf.
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U are right about that..it is been an issue ever since AG Bell forced all deaf people to be oralists and to many deaf people, the CIs are the symbols of that view..yea, the view can be changed. Just will take some time.

It took me to join this forum to be more relaxed about CIs...:)
 
jillio said:
Thanks for reaffirming that the oral only attitude is still prevalent in the CI community. This is a point shel and I have often brought up, only to be told by the CI zealots that we are wrong. Your experience confirms.
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I think my point was that having a CI doesn't preclude pursuing a billingual approach, such as Coles mum appears to be following with some success. I don't deny that overall, that many professionals have an oral approach. The problem that many parents face is getting a broad range of information.

However, the difference is that you appear to argue that this is one of the reasons why deaf children should not be implanted at all. Whereas I would personally encourage parents to be educated about all the different viewpoints and experiences when they are in the process of considering implanting their child and to learn to sign as well.

It's not an either/or situation.
 
Need some advice from you parents

Now I need some advice..I have brought this up in other threads but I will start again.

About a month ago, I was outside at the playground in my townhouse complex playing with my son. He saw another baby about his age but couldnt walk so he ran up to the baby and started hugging him. Cute, heh? Anyways, I went after him to make sure he doesnt hurt the baby by accident and the mother was standing by and laughing. So I started signing to my son telling him careful and blah blah. The mother looked wide eyed at me so I thought "Oh boy..another person who has never seen sign language and will look at us like aliens." I mean she really had a huge shock look on her face so I assumed it was why. Anyways, she started talking to me so fast so I told her to slow down cuz I am deaf. She was like, "Oh your son is not deaf?" I said no but he knows sign language. She was really surprised and then she said her son is deaf. My turn to look surprised just like she did. LOL! She said that he still hasnt spoke a word and I asked how old he was. She said 17 months and she said he is delayed because of his deafness. I told her that is not always..and I asked her about him learning sign language and she said that the specialists told her that he must learn how to talk before learning sign language. Nothing new there with the specialists...so I told her about my school and we have an infant program. She said she never heard of my school and she thought it was far and I said no...only 10 mins away. She was shocked and then I told her that I can give her the number for it. She said fine and asked me if they have speech therapy. I said yea and she said that she would rather her son learn to talk than learn sign language. I had to keep control of myself cuz he is obviously being deprived of a language if he isnt picking up on oral language so I told her that sign language is important too and she was very hesistant about the idea of sign language and kept saying she wants him to learn to talk and blah blah...so I gave her the number to my school. Asked the family ed dept last week about it and they said that nobody has contacted them but they sent me pamphlets to give to her.

Now, this is where I need your advice...should I go up to her door and knock on it and give her the info? For the past month, I would see her at the playground and whenever she saw me approaching she would pick her son up and go inside. Other times, I have seen her come out of her house only to turn right around and go back in. Maybe I am reading too much into this but it seems like she is avoiding me? Cole's mom mentioned about the deaf community hanging back and it got to me thinking about this mother but I dont want to appear to be forceful so.....?

Thanks
 
Yes - I don't think it can hurt to give her the pamphlets to read, especially if it gives her more information about the school, especially if it has an infant program.

If you are a bit leary about knocking on her door, you can always put the pamphlets in her mailbox with a friendly, handwritten note. It does seem like she is avoiding you but she might need time to absorb the information and chew things over. My sister went through a stage like that - so don't take it personally. It just shows that she is confused.

Was the little boy wearing a hearing aid?
 
If he's using hearing aids and he hasn't spoken a word, the oral approah clearly isn't working for him. I do hope that the mother will come around before he gets serverly delayed in language.
 
R2D2 said:
Yes - I don't think it can hurt to give her the pamphlets to read, especially if it gives her more information about the school, especially if it has an infant program.

If you are a bit leary about knocking on her door, you can always put the pamphlets in her mailbox with a friendly, handwritten note. It does seem like she is avoiding you but she might need time to absorb the information and chew things over. My sister went through a stage like that - so don't take it personally. It just shows that she is confused.

Was the little boy wearing a hearing aid?
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Yea, I dont want to seem pushy. Nah, i am not taking it personally..it seems she is really confused and afraid of me. LOL!

Anyways, nope I didnt see any hearing aides or CIs so that to me is pretty serious cuz if he is completely deaf as the mother stated then he is missing out on language development. I am thinking now I am doing this for him so if the mother gets mad at me for coming to her home, at least I can know I tried.

Thanks. I just wanted to know if the parents had felt that way in her shoes..scared and confused and if they would appreciate it if deaf people seek them out or just leave them be until they work thru their emotions?
 
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