It's A Parents Decision

[kayla123]

I keep coming across these posts about how parents who implant their children are doing so to "fix" their child. I also keep reading about how so many people grew up miserable because they grew up oral and were teased and did'nt learn sign until later in life. I could see how that would be frustrating and it's one thing to share these experiences with parents of dhh kids but it's another to sit there and put these parents down for making decisions about implanting their children and wonder why we get defensive. Putting my daughter through surgery was the toughest decision i made and when i read about how people think that it's an easy way out, that to me is frustrating. We work very hard with our children and i come here to share stories with other parents of dhh kids. I have not seen any parents against sign here at this forum and thats why i don't get why parents get put down. Communicating verbally is a great tool to have,but people make such a fuss out of it about all the therapy and the strain to lip read. This is where implanting a child early comes in, communicating with a child today who was implanted early on dosent require as much strain as it did when a lot of you were growing up. This is based on children that i met, i know this in not the same in all cases. When having a conversation with my daughter, it comes very natural to her at this point. Parents don't jump into this decision as easy as you think and the doctors don't push on you either, sure they'll bring it up. If your child has a profound deafness, they will give you options. If it is pushed on some parents out there then it is up to the parent to research on their own about it. It's up to the parents and it's nobody elses business. Nobody here would want someone else to tell them how to raise their child whether he/she be deaf, blind, blue or whatever. I am not deaf, but that dosent mean anyone else knows my child better than i do. It's not like how it was 20 or so years ago, parents are alot more involved now and do alot more research these days. We come here to find out about deaf culture and it seems that we are being pushed away. I just came here from a thread that was locked and just had to share this with you all.

 

[Cheri]

You came here to learn about the Deaf Culture? I haven't seen you posted in any other threads beside Cochlear Implants.

Most hearing parents don't have any experience with deafness and know nothing about it and many in the medical field tell them to contact speech therapists, or oral programs or encourage cochlear implants to try to "fix" their child. Don't tell me it isn't true, because it is true.

I've read posts by Parents with cochlear implants kids, some of them have talked about teaching their kids sign language, some have said that they don't use it too much, some says that it was not even need to use it anymore, some say they're just started learning and they don't see learning ASL should be requirement, because there's no deaf members in the family. I could go on and on.

You know what I missed most about those little kids, their using of sign language, their cute little hands signing that beautiful language, I haven't seen at least one deaf child with CI that knows sign language, not one. Maybe on this message board, but who knows really. It breaks my heart in pieces because they are robbed out of their Deaf Culture now being only involvement in the hearing world. It's sad to me it is.

 

[Deaf258]

I keep coming across these posts about how parents who implant their children are doing so to "fix" their child. I also keep reading about how so many people grew up miserable because they grew up oral and were teased and did'nt learn sign until later in life. I could see how that would be frustrating and it's one thing to share these experiences with parents of dhh kids but it's another to sit there and put these parents down for making decisions about implanting their children and wonder why we get defensive. Putting my daughter through surgery was the toughest decision i made and when i read about how people think that it's an easy way out, that to me is frustrating. We work very hard with our children and i come here to share stories with other parents of dhh kids. I have not seen any parents against sign here at this forum and thats why i don't get why parents get put down. Communicating verbally is a great tool to have,but people make such a fuss out of it about all the therapy and the strain to lip read. This is where implanting a child early comes in, communicating with a child today who was implanted early on dosent require as much strain as it did when a lot of you were growing up. This is based on children that i met, i know this in not the same in all cases. When having a conversation with my daughter, it comes very natural to her at this point. Parents don't jump into this decision as easy as you think and the doctors don't push on you either, sure they'll bring it up. If your child has a profound deafness, they will give you options. If it is pushed on some parents out there then it is up to the parent to research on their own about it. It's up to the parents and it's nobody elses business. Nobody here would want someone else to tell them how to raise their child whether he/she be deaf, blind, blue or whatever. I am not deaf, but that dosent mean anyone else knows my child better than i do. It's not like how it was 20 or so years ago, parents are alot more involved now and do alot more research these days. We come here to find out about deaf culture and it seems that we are being pushed away. I just came here from a thread that was locked and just had to share this with you all.

Let me share you a tidbit about me..

Being oral since birth made me a dysfunctional, bitter, old fag.

Learning ASL on my own at 20 years old, no thanks to my family, has helped me regain myself and my identity as a normal human being.

I am so much happier now, and wish the same benefits of ASL for other Deaf people like me.

 

[Gamer12]

We come here to find out about deaf culture and it seems that we are being pushed away. I just came here from a thread that was locked and just had to share this with you all.

allow me to share this view of mine with you - i come here and found that the culture i raised in is fading away. a different situation - an african was taken away and stuck in the strange place for several years before he managed to escape back to his homeland. he found the society and culture he grew up in fading away or going gone - the white people came and forced them to learn how to act and speak like white people and discarded their native language and culture -- what reaction he had? anxious, scary, anger and so on.

now think about how deaf people without ci feel about their culture eradicating by some of their own people -- not outsiders but some of their own people. to force them to learn how to act like hearing people, speak like hearing people and so on. it's a dolchstosslegende-like situation for deaf people without ci.

i and other ASL-fluent deaf people are the ones who are being pushed away from some of our own people. for years many hearing, oralists, and others have been looking down on us as inferiors. and now? some ci-users joined them and look down on us as inferiors. what do you think how we feel about them? i think we had been discriminated, judged and demoralized enough to develop the capacity of mistrust toward ci-users in general.

the culture i know and i love is going gone in front of my very eyes and i reacted as what african would react to the people who took his culture away. naturally some wankers will whine that we need to get a hard grip on life blah blah but i come to the conclusion - they don't understand what we feel and what we see. pro-ethnocentrism wankers never did anyway.

deaf258's topic manages to give us [me and neecy] a middle ground to discuss our views. unlike others, neecy has a good attitude in spite of the attitudes i gave her. hat off to her for being patient with me. i mentioned "i only will give you what i get from y'all" in my old post. that's how it works.

so mods, am i going to get banned? so report-happy trigger-finger ci-users, am i going to be reported for sharing my view with y'all?

 

[R2D2]

Gamer,

You expressed yourself pretty well I thought. It is difficult for those within a culture when they see that things are changing. CIs aren't the only factor causing this change - there is also rubella vaccinations, improved medical care and declining fertility rates in the general population, which is causing the actual number of deaf babies born to sharply decline. On the horizon, we have things like research into nerve hair regeneration, which will mean that probably many deaf people will be "cured" literally one day. Here in Australia, Auslan has already reached endangered language status.

If you look at the history of successful cultures, they are ones that were open to adapting and I think this means that the deaf culture will need to be open to those with a CI - although you say that your ASL friends who got CIs have pushed you away? I understand that back in the 1940s when hearing aids first came out that people thought it would destroy the deaf culture, but this didn't happen. So take heart in that.

I think you will find that most people with CIs regard themselves as deaf (except maybe your friends) and at some point, even if they were raised orally, they will probably learn to sign (Deafdyke keeps quoting some research to that effect). Also, the results of CIs on children are still variable enough for many to require a total communication program. I am a deaf adult who was raised orally with hearing aids and I reckon I was probably more in denial about my deafness back then than I am now with my CI, which actually gives me better hearing when turned on. When it's turned off I am almost totally deaf - no doubt, no dispute. There is no getting away from that fact. Therefore, I see value in teaching young implanted children to sign as well as to speak for safety factors and to enhance communication.

However, you will find on this board that the main point of difference is whether or not it's appropriate to implant a profoundly deaf child who does not benefit from hearing aids, even if you are going to teach them to sign as well as to speak. Most people here agree that if a deaf adult gets a CI, it's their choice.

 

[R2D2]

Let me share you a tidbit about me..

Being oral since birth made me a dysfunctional, bitter, old fag.

Learning ASL on my own at 20 years old, no thanks to my family, has helped me regain myself and my identity as a normal human being.

I am so much happier now, and wish the same benefits of ASL for other Deaf people like me.

Out of interest, when you learned ASL in your 20s did you completely drop your oral skills or do you still use them from time to time?

 

[Deaf258]

Out of interest, when you learned ASL in your 20s did you completely drop your oral skills or do you still use them from time to time?

I speak and lipread less now, but I did not completely drop my oral skills.

 

[R2D2]

I speak and lipread less now, but I did not completely drop my oral skills.

Okay, cool. Glad that you are much happier now. Do you have a better relationship with your family now that you have a definitive identity or was that something they never accepted? In other words, were they otherwise caring parents who could have been better educated?

 

[shel90]

I agree with and feel the same as Cheri, deaf258, and gamer...

Cheri, I noticed that too about the parents not being involved much with the threads about Deaf culture and ASL. I see the same thing...most of them gravitate to the CI or oral therapy threads. Only two parents showed an interest in those threads. Also, I don't see many of these parents asking us what it is like growing deaf or what communication methods worked for us. I see that attitude from the parents of several CI users in real life. All they ask about speech speech speech..when will my child talk, when will my child comunicate with us, and so much more. I get tired of it, to be honest with u.

I understand it is a good skill to have and that it is good to learn how to interact with hearing people but what about the deaf community and ASL? It feels like what we value is being demoralized or looked down.

Many of u already know how I grew up feeling isolated and angry by not being allowed or given the opportunity to learn ASL. No need to repeat my story. Now that issue has been dealt with and I am happy where I am. I am just not happy by how much oral skills or the hearing community r valued more than the deaf community and ASL. There shud be an equal balance to both.

If parents want to implant their children, I don't care anymore like I did before even though I don't like it but if the parents want to also expose their children to both worlds and both languages, it makes me want to give them a BIG hug for valuing the deaf community and ASL just as much as they value the hearing comming and spoken language.

 

[jillio]

I agree with and feel the same as Cheri, deaf258, and gamer...

Cheri, I noticed that too about the parents not being involved much with the threads about Deaf culture and ASL. I see the same thing...most of them gravitate to the CI or oral therapy threads. Only two parents showed an interest in those threads. Also, I don't see many of these parents asking us what it is like growing deaf or what communication methods worked for us. I see that attitude from the parents of several CI users in real life. All they ask about speech speech speech..when will my child talk, when will my child comunicate with us, and so much more. I get tired of it, to be honest with u.

I understand it is a good skill to have and that it is good to learn how to interact with hearing people but what about the deaf community and ASL? It feels like what we value is being demoralized or looked down.

Many of u already know how I grew up feeling isolated and angry by not being allowed or given the opportunity to learn ASL. No need to repeat my story. Now that issue has been dealt with and I am happy where I am. I am just not happy by how much oral skills or the hearing community r valued more than the deaf community and ASL. There shud be an equal balance to both.

If parents want to implant their children, I don't care anymore like I did before even though I don't like it but if the parents want to also expose their children to both worlds and both languages, it makes me want to give them a BIG hug for valuing the deaf community and ASL just as much as they value the hearing comming and spoken language.

Once again, I am on the same page with you and Cheri. I personally opted not to implant my son, but rather to go the HA route (in left ear only; right ear received no benefit). From the time that he was diagnosed, I was pushed to enroll him in oral programs. Every time I asked about the use of sign language to improve his ability to communicate, I was told that sign would impede his development of oral skills. We started off in an oral program at the Mama Lere School at Vanderbilt University, and after several months I saw no improvement in his communication skills, but a big increase in the amount of frustration he was showing in trying to communicate orally. He was being asked to do something that was completely unnatural for him, and far too difficult and structured for a 15 month old child. He simply wanted to be able to communicate his needs and his wants to me. The mother child relationship suffered because communication was so difficult. That is when I purchased a sign dictionary and began reading everything I could get my hands on about child development and deafness, and Deaf culture.

This is how I made my decision: I purchased some flash cards with pictures of every day items. One day my son got up for breakfast, and after he had eaten, I pulled out a flash card with a picture of a pair of pants on it and made the sign for "pants". I pointed to the picture, and signed again. My son ran to his room, opened a drawer, and ran back to me with a little pair of jeans in his arms. He dropped them at my feet, and signed "pants" with the biggest grin on his face I had ever seen. The light in his eyes told me everything I needed to know. Despite the hearing aids, despite the speech therapy, despite everything I was being told I needed to do for my child, that was the first time that he actually experienced communication. And his smile and his excitement proved to me that communication was what he needed--not speech, not hours of therapy, but communication.

That very day, I took him to his preschool, and instead of staying to watch his therapy as usual, I went to the League for the Hearing Impaired, intoduced myself in my limited sign, and explained that I had a deaf son, and I needed help learning what it meant to be a deaf child so I could make decisions that were based on what he needed, rather than what I thought he needed because I was hearing and had never been a deaf child. The Deaf adults there took me under their wings and shared with me what it was to grow up as a deaf child, they taught me their language, they taught my son their language, and they welcomed us both as if we were family.

From that day forward, when my son went to preschool and speech therapy, I went to the League for the Hearing Impaired and volunteered as a TTY operator. After his class let out at 1:00, he and I both would go have lunch, and spend the rest of the day hanging out with the Deaf adults at the League, just chatting and allowing him to develop his communication skills in a natural environment. He blossomed in that environment. For the first six months, he would run around and point at things, asking what the sign was. Everytime he met someone new, the first thing he would do was sign, "Name sign?"

Everything I have read, everything I have experienced tells me I made the right decision. The fact that my son is well adjusted and confident tells me that I have done the job I was supposed to do as a parent. The fact that he still, at the age of 21, sees no need to have a CI tells me that he is comfortable with his deafness, and sees no reason to have surgery to correct it. It is not a problem for him. If he must communicate with hearing on their terms, he speechreads amazingly well, and he does have oral skills, although the deaf accent is always evident.

For me, accepting my child as he was, and doing whatever I could to help him grow into a happy healthy adult just as he was was more important that visiting a surgeon to change him. Exposing him to Deaf adults gave him the security of having Deaf role models, and seeing that he could live a successful life--deaf or not. I believed--and still believe with all my heart, that it is more important to concentrate on the strengths a child has, rather than to spend all of your time focusing on what that child is missing. When that is the case, we sacrifice emotional and mental health for the sake of oral language skills. I don't think the trade off is worth it. And all you have to do is read the stories of Deaf adults on this board to see that we are crippling our children by not allowing them to be comfortable and secure in their deafness.

I ahve no problems with parents who choose to implant their children. I have a problem with parents who refuse to allow their child to be deaf. That means exposing them to deaf culture, exposing them to their native language, and CI or not, embracing the fact that they are deaf. Teach them Deaf history, show them how beautiful their language is. Allow your children to teach you something instead of spending all of your time trying to make them interpret meaningless sounds and repeat meaningless syllables.

Having a Deaf son has taught me many things. I have learned and grown as a person from the experience. I am grateful for that. Had I not been given a deaf child, I would never have been exposed to a group of people that have given me so much, I would never have made some of the valuable friends I have made. I would never have opened my mind to the fact that to be deaf is nothing more than to be deaf. It has nothing to do with an inabiltiy to hear sound--it is simply deaf. So what? Big deal! He's deaf.

My son was a member of the signing choir at his deaf school, and watching them perform was one of the most moving experiences of my life. I was always moved to tears when I watched their performances. One day, a hearing friend asked me what the most imprtant thing was that I had learned from raising a deaf child. I said "I learned that music seen is as beautiful as music heard." For me, that says it all--the deaf experience is every bit as full and rich as the hearing experience is.

Because my son is deaf, I have had contact with numerous parents and numerous deaf children. I have seen the way that some of these children suffer. They are slow to develop social skills, they may speak well, but their communication skills are lacking, they have no zest or zeal for life. They are unhappy, and they are angry. And yes, some of these children have had CI. But the focus is so much on their oral skills and improving their abiltiy to attend to sound that their very souls are being neglected. They are not permitted to be children. And it is not necessary. There is a way to give your child communication and a childhood. There is a way to provide for all of your child's needs, not just their speech and residual hearing. I know there is a way, because the Deaf community showed me the way. I will be forever grateful. And my heart will always bleed for those deaf children who are denied the opportunity to know, from early childhood on, that they are only deaf, not broken. That whatever language they use is absolutely wonderful, that they don't have to do it the way the hearing people do to be accepted and loved. If that makes me a militant, so be it. I'll wear the label with pride. And yes, my son has to live in a hearing world, but he had to learn how to live as the deaf person he was first.

 

[rockdrummer]

The bottom line as I see it is that deaf people should assimilate to both worlds. If you don't then you isolate yourself from the world you choose to not assimilate with. That is an individual choice. Even if parents decide to opt for a CI, their child will have a choice to learn sign language or not. Just as some on this board say wait and let the child decide on a CI, the same can be said for letting the child decide to learn sign language. It's a two way street. As I have mentioned before it's my personal belief that a deaf child should be exposed to both worlds. I can understand how in the past the discrimination was rampid and I'm sure it still exists today but I am also sure its nowhere near the extent it was in the past.

 

[Cheri]

I agree with and feel the same as Cheri, deaf258, and gamer...

Cheri, I noticed that too about the parents not being involved much with the threads about Deaf culture and ASL. I see the same thing...most of them gravitate to the CI or oral therapy threads. Only two parents showed an interest in those threads. Also, I don't see many of these parents asking us what it is like growing deaf or what communication methods worked for us. I see that attitude from the parents of several CI users in real life. All they ask about speech speech speech..when will my child talk, when will my child comunicate with us, and so much more. I get tired of it, to be honest with u.

Yep, I've noticed it too, It seems that they only came here just to showing off and bragging how cochlear implants are working for their children, the sounds they hear. I haven't seen any positive side of sign language, none. I also see all the positive side on verbal communication, again no sign language was mention. If you (Parents) love your children like you say you do, do these things as responsible parents, in an effort go give your children many opportunities as possible for their future. Don't think about yourself, It isn't about yourself, It's about your deaf child. We are told over and over that “studies show” this and “studies show” that, So many things will work not just sticking with verbal communication. Evaluate, analyze, and decide on all communications. You'll be grateful that you listen to the deaf community, that's us, because we are deaf and we know what is it like to be robbed out of the deaf culture by not learning to sign.

 

[jillio]

Yep, I've noticed it too, It seems that they only came here just to showing off and bragging how cochlear implants are working for their children, the sounds they hear. I haven't seen any positive side of sign language, none. I also see all the positive side on verbal communication, again no sign language was mention. If you (Parents) love your children like you say you do, do these things as responsible parents, in an effort go give your children many opportunities as possible for their future. Don't think about yourself, It isn't about yourself, It's about your deaf child. We are told over and over that “studies show” this and “studies show” that, So many things will work not just sticking with verbal communication. Evaluate, analyze, and decide on all communications. You'll be grateful that you listen to the deaf community, that's us, because we are deaf and we know what is it like to be robbed out of the deaf culture by not learning to sign.

Thank you Cheri We have to let our deaf kids be happy and confident with who they are.

 

[Cheri]

jillio,

I don't know where to begin, but your story made me shed a tear from here and there, I'm most certain that most deaf people would love to have you as their mother, like me. Parents are supposed to be presented with information on the various options in a fair and unbiased way, but it seems that a number of them aren’t, the ones who trend to send deaf newborns straight to the cochlear-implant clinic. You are so much like my Dad who had done so much, by finding so much options that he could give to both of us my sister and I. This isn’t always an easy task, never has even when hearing parents have no knowledge of the Deaf Culture, they just finding out more options. I applause you as a parent in what you've done for your son, by searching for a better method for your son, and I'm very glad it went to a successful path, You didn't give up, and I'm very and very proud of you.

 

[VamPyroX]

What people need to realize that there are many alternatives to cochlear implants... with or without.

A lot of parents have their kids get cochlear implants and then not acknowledge the fact that they are still deaf. That's why deaf identity is becoming an issue nowadays.

There are a lot of unpredictable things that could have been differently and my current status would probably have been differently as well.

I was born hearing and became deaf around the age of 1 due to neglect. (If I wasn't placed in foster care, I would probably be a deaf trailer park biker dude who smokes and drinks all day long.)

I was then placed in an oral deaf institute. (They didn't teach sign language, just oral skills.)

I didn't learn sign language until I moved out-of-state and went to mainstream school. (They had a deaf program. A deaf class and a hearing class for each grade.)

No, my first sign language wasn't ASL or SEE. It was MSS. (Don't ask me, it's hard to explain.)

Being with other deaf students helped me realize my deaf identity and that there will always be others out there who are deaf. So, I acknowledged the fact that I am indeed deaf. I made signing part of my identity.

Today, I meet a lot of deaf students who got cochlear implants at a young age. They don't sign or refuse to sign. They consider themselves "cured" and "hearing". They treat other deaf people (who don't speak and/or hear well) with disrespect. Basically, these deaf people are part of the asshole groups on campus.

With your kid, I would suggest that you still learn sign language... if possible. Remember, when she isn't wearing her CI... DEAF. She will always... I mean ALWAYS... be deaf. She will swim, play in the mud, run in the rain, sleep, waterski, dive, etc... without her CI. So, what happens then? "Oh, sorry... just wait until you get your CI back on." Well, that's not a simple solution.

I wouldn't want your daughter to be one of the future students in a deaf community that she hates. It's like a black man being raised by white parents who won't acknowledge his black identity... then he's among a group of blacks at his college where he is uncomfortable. Someone, he's black... accept it.

 

[Angel]

jillio,

I don't know where to begin, but your story made me shed a tear from here and there, I'm most certain that most deaf people would love to have you as their mother, like me. Parents are supposed to be presented with information on the various options in a fair and unbiased way, but it seems that a number of them aren’t, the ones who trend to send deaf newborns straight to the cochlear-implant clinic. You are so much like my Dad who had done so much, by finding so much options that he could give to both of us my sister and I. This isn’t always an easy task, never has even when hearing parents have no knowledge of the Deaf Culture, they just finding out more options. I applause you as a parent in what you've done for your son, by searching for a better method for your son, and I'm very glad it went to a successful path, You didn't give up, and I'm very and very proud of you.

^ Me too.....:smiling:

 

[rockdrummer]

Yep, I've noticed it too, It seems that they only came here just to showing off and bragging how cochlear implants are working for their children, the sounds they hear. I haven't seen any positive side of sign language, none. I also see all the positive side on verbal communication, again no sign language was mention. If you (Parents) love your children like you say you do, do these things as responsible parents, in an effort go give your children many opportunities as possible for their future. Don't think about yourself, It isn't about yourself, It's about your deaf child. We are told over and over that “studies show” this and “studies show” that, So many things will work not just sticking with verbal communication. Evaluate, analyze, and decide on all communications. You'll be grateful that you listen to the deaf community, that's us, because we are deaf and we know what is it like to be robbed out of the deaf culture by not learning to sign.

Really? I don't know what I am doing here anymore. Perhaps it's time to move on.

 

[Cheri]

I don't know what I am doing here anymore. Perhaps it's time to move on.

Hun, I wasn't speaking of you, You've posted in other threads beside cochlear implants. I was more pointing to the ones who showed no interested in learning about the Deaf Culture only posts in the cochlear implant forum.

 

[rockdrummer]

Hun, I wasn't speaking of you, You've posted in other threads beside cochlear implants. I was more pointing to the ones who showed no interested in learning about the Deaf Culture only posts in the cochlear implant forum.

Well alot of times the way people talk and the words they choose make me feel like all the hearing parents are lumped into the same catagory. No offense taken.

 

[Angel]

Well alot of times the way people talk and the words they choose make me feel like all the hearing parents are lumped into the same catagory. No offense taken.

Well alot of times CI users here rubs us in the wrong way by saying being deaf is sad and miserable!....:rl: