I recently read a blog post written by a blogger in my local community. In this post, she was posing a question about a girl she knew of with a CI who started attending a "voice off" signing school program when she was three. This girl was 18 months old when she was implanted, and primarily signs at home. According to this blogger, she knows 75-100 kids who have CI's, and in her "expert" opinion, this girl was the only implanted at a young age who cannot understand spoken language. So she poses the question: Does she primarily sign because she cannot understand spoken language, or does she not understand spoken language because she primarily signs? Reading the post,and the comments afterword, it was clear that she felt it was the latter. I read that post last night. Shortly after that, she read my wife's post, "life Doesn't Get Much Better Than This" (link can be found on my blog). In her comment she mentioned that my son, and this one girl are the only children she knew of who were implanted who could not understand spoken language, and then again pointed out our short comings as parents because we will not go up to Logan for our mapping. She then said that every child should respond well to a CI unless they have some other disability. Well I want to clear a few things up for her, and anyone else who might be interested.
The first thing I want to clear up is that neither of my children have a disability or multiple disabilities that would prevent them from learning spoken language. Being deaf is not a disability. They can do anything that anyone else can do, and I won't let anyone say they are handicapped or disabled, including such a fine expert as this blogger obviously is.
Another thing I want to clear up is her point about knowing 75-100 CI kids. I believe this to be true. I would be curious to know how she knows these kids though. My guess would be that she has met many of them from her AG Bell meetings or the likes. Most of the kids whose parents are involved in AG Bell meetings would most likely be primarily Auditory/Oral kids. It just stands to reason. I wonder how many kids with CI's she doesn't know who primarily sign, and she doesn't know them because chances are, they and their parents don't go to the AG Bell meetings (I personally have never been to one). It would stand to reason then, that the only kids with CIs that she would know would understand spoken language very well.
Also in her post, she mentions that the school this girl goes to does not have any auditory or speech therapy. That the classrooms are completely voice off. I have to call this bluff. There is a giant hole in this story. A hole the size of Texas. Simply put: It is not true! My son goes to the same school, and he receives therapy everyday, from a qualified therapist. They are in the process of even having an audiologist qualified in mapping CIs at the school. It doesn't sound to me like the "voice off", anti-speaking environment that this blogger was portraying it as. I can say, having had occassion to sit in meetings with the principal of this school, she is dedicated to showing that JMS is completely capable of providing any and every service for any and every deaf child in Utah. So while this blogger will attempt to paint a different picture, I can tell in my experience, her picture is a fantasy and nowhere near the reality.
Finally, to add my two cents about the "discussion" she was trying to start, just because a child prefers signing over oral and auditory communication, does not mean that they are in any way inferior to the children who prefer auditory and oral communication. I don't care what the reason is why my son prefers signing over oral communication. It doesn't matter to me. I don't think anyone has the right to examine the choices I have made concerning my children, and decide if they are right or wrong. The right to raise my children is my own sacred right, and I believe it is everyone's. I may not feel this bloggers choices are right for my children, but I would certainly never tell her her choices were wrong for her. I know, because I've chosen ASL for my kids (they chose it, actually) that makes me an extremist, but in reality, the only thing I am extreme is allowing each parent to make those choices for their own kids. No one knows their kids better, so who is better qualified than them?
I love my son. I love who he is, and his language is part of who he is. I am so proud of him. He is unbelievably smart and perceptive. I wouldn't change a single thing about him. I know it may be hard for some people to understand, but I believe my son prefers to be Deaf. I remember one time, we were trying to get him to wear his processor, and he told us no. He told us, "I'm deaf. I don't hear." I am so proud of my son and who he is, because who he is is amazing. He is totally capable of learning spoken language, but he loves his sign language. It is a part of who he is. I know, this blogger might respond that no one is saying that I should take that away from him, that her daughter does both. And that is all true. I only say it, so that when I say that it's not an issue of mapping or which audiologist we go to, that it is an issue of his choice and his preference, that when I say that, it might somehow make sense to her, and she can lay off us. I am glad she has found a good path for her daughter. Can she say she is glad we found a good path for our son and our daughter? Or is she still bugged because it is different than the path she chose. Isn't that what an extremist does? Try to push their beliefs and experiences and opinions on others?
For the girl in the original story, does it matter which caused which? Isn't the most important thing that she is happy, that she has a language and friends and peers? Or does that only count when that language is spoken English, and those friends and peers are hearing children from the mainstream school? Is happiness only found when kids go to the neighborhood schools, or can they be happy going to a deaf school with their deaf peers? Can hearing parents only really have a meaningful relationship with their deaf child when their deaf child can hear and speak just like them? Or is it possible that those hearing parents could become proficient in a new language and a new culture, and have just as meaningful relationship? I guess, again what I am saying is, does it really matter, or is the only path to raising a successful deaf child the one that this blogger chose for her daughter?
Resep Perkedel Kentang Telur Dadar Gulung
7 years ago
Nukmber one, I never said you child was disabled, or had multiple diasabilities. I didn't imply it or anything.
ReplyDeleteMy daughter attended the school for 4 years before we left. The school was certainly voice off when we were there. I have no idea what is going on right now, but when we left, speaking in class was FORBIDDEN. We were not allowed to have auditory therapy. We sat in an IEP meeting for 3 hours, where the principal cried and said "I understand how much you want (listening therapy) but I can not allow it in my school. It is cruel." My daughter was only allowed to have speech therapy, once a week for 20 minutes and it was SIM-COM at all times. They were not allowed to do auditory. I understand that there are sweeping changes underway at USDB, but you have not been there as long as we were. My child was NOT allowed to be given proper services, and spoken language was not valued at all.
As for the CI kids I know. I actually do not support AG Bell, but I have had the opportunity to travel to several different states with another organization, and I have been affiliated with several school. I have know many CI users, both children and adults. I have know ASL users and oral only. I have met oral adults and ASL adults. I am just a little further down the road than you.
As for the little girl I know. I actually know her pretty well. I have known her for 5 years. When my daughter was first activated, the school could not (or would not) provide appropriate services for my daughter, so the teacher asked me to come in myself and do a "listening time" with my daughter, this girl and another hoh child. I actually spent hours working with her on her auditory skills, so I am not actually speaking from an uninformed position.
Again, I can not speak to what the school is like now, but when we started 4 years ago, it was vehemently voice-off. We had CODA's in our preschool that were admonished against speaking. They were told it was against the rules at school.
No, I actually don't believe that a child who is MAPed correctly will choose to not hear. Why would they? Would a child who sees better with glasses choose not to wear them? If they benefit, why on earth would they choose not to use it?
I am sorry that you are so affronted by the idea of seeking a second opinion in audiology. Again, I have 5 years experience seeing the audiologists at Primary's and I know how poor they really are. I have since had the opportunity to travel and see better, more qualified professionals, and have seen what terrible audiological care my daughter was given in the first 5 years of her life.
I never meant to offend you, I simply thought that you might appreciate "been there, done that" perspective.
I just want to speak to a couple of points. First of all, when you say you never said my son was disabled or had multiple disabilities. Here is the quote from you on my wife's blog post : "If a child is implanted before age three, given appropriate follow up and MAPing, nearly all develop age appropriate spoken language (barring another disability). " I will grant that you may not have come out and said that my child was disabled, however in the parentheses you state: "barring ANOTHER disability, which would at the very least imply that my son has at least one disability. Your words, not mine.
ReplyDeleteAnother point, before you begin to slander what is happening right now at JMS, perhaps you should look at what you wrote just now, where you said you have no idea what is happening there now. I cannot speak to what you went through while attending that school, I would not begin to. However, I will speak up when people begin to say things about the school that are currently untrue. By saying that there are no speech services there, it is completely voice off at all times and that speech is completely forbidden, you are stating what your experiences were, and superimposing them on us and others who currently attend the school.
At the same time, I will apologize for mentioning AG Bell by name. You may not officially be affiliated with that group, and I never meant to imply that you were. However, you have gone to their conferences and meetings and what not. You have blogged about it. That's fine. There is nothing wrong with AG Bell, if you are 100 % committed to an oral only lifestyle for your deaf children. There is also nothing wrong with making those choices. I know nothing about this other group you have traveled with, but I would imagine that it works primarily with "successful" oral CI kids, since that is how you have met many of the CI kids you know, as well as where you have seen the superior audiological services. So my point remains the same. In that particular circle, you are not very likely to meet many CI kids who prefer signing over oral and auditory communication.
I can honestly say that I really dislike the comparison of Cochlear implants to glasses. I have heard it so many times, it makes me sick. When someone needs glasses, they can still see without them, somewhat. It may be very poor, but they can still make out something. Glasses will not help a person who is completely blind. Glasses also help individuals who have begun to lose their sight with age. Similarly, hearing amplification does wonders for someone who can hear a little bit, or who is losing their hearing with age. They have had enough experience with sound to feel like they are missing something. Cochlear implants are amazing, and can help many kids who are profoundly deaf to hear. But to assume that every child or every individual who is profoundly deaf would choose hearing when properly mapped is a fallacy. This takes the premise that hearing is better than or superior to not hearing. Why? Because you are hearing, and you enjoy hearing. If I were to lose my hearing, I would do anything to get it back, because i hear now, I enjoy it. However, in reality, hearing is not better than not hearing. They're just different. If you had spent your whole life not hearing, and you learned to relate to the world that way (whether for 2 years or 65 years) and all of a sudden noise ( I believe all sound would be noise in that instance) was introduced, why would it be unreasonable to think some people (whether 2 or 65) would choose to continue to not hear. My son loves the world he sees, but so far, with good maps (because we have had good maps) or bad, he does not like the world he hears. Granted you might feel differently, but we have also had different experiences.
This brings me to my last point, addressing yours about being further down the road and giving us a been there done that perspective. Our roads are very different. I don't believe you are further down our road. Everyone travels their own road. It is always great to hear from supportive people who have been in similar circumstances. However no one wants to hear how they are making mistake after mistake, or how their experience is exactly the same, so their decisions have to be exactly the same. I respect the choices you have made for you and your family. I have seen your daughter, and it is amazing what she can do. You should be very proud. I am equally proud of my son. I feel equally strongly about my choices that I have made. I guess in reality, while you have gone through a similar experience with your daughter in having to make tough choices, you have not been exactly where we are or done exactly what we have. I appreciate any supportive words, but words like you MUST do this or you MUST do that are not supportive. They are oppressive.
ReplyDeleteThe organization was Hands and Voices, they are a national parent driven organization that supports all families of children with a hearing loss, regardless of their methodology choices.
ReplyDeleteI have attended a single, local AG Bell conference. I have also attended USU Deaf studies conferences.
Also, I am curious however, why do you think there are so many AG Bell kids that are spoken language users? Do you think that a particular kind of person is drawn to the organization, or one that is opposed to it? Do you believe that they seek out different professionals or....what (I'm out of idea suggestions)?
Again, I have had the opportunity to visit other school and seek the experience of professionals outside of Utah, because I sought them out. I have had the opportunity to speak to both Deaf and deaf adults. I have met deaf teachers of the deaf who are strong advocates for oralism (even some who know ASL but still advocate for oral only). I have met teens with CI's and teens who use ASL. I talked to countless adults, both those who affiliate with the Deaf community and those who don't.
As for the glasses analogy, no it is not perfect, because glasses correct vision and implants do not. However, the idea that all people who use implants can not hear without them is also a fallacy. My daughter (and many people with implants) had quite a bit of residual hearing when she was implanted. In fact, she could hear loud speech WITHOUT amplification.
As for me saying "without other disabilities", that is because I did not want to misstate. Children with handicaps (whatever they may be) have very different expectations and outcomes than children who are only deaf. Therefore, I simply wanted that to be clear. (also, there are people in the blog world who actually follow me around, seeking out opportunities to catch me "misrepresenting" the successfulness of CI's and they would have jumped down my throat about kids with complications if I had not been clear. That is why I put that in as an aside.)
Also, when I say "voice off" in reference to JMS, it is simply in regards to the way that they use ASL. It is "voice-off ASL" as opposed to SIM COM. I have never said that they do not have speech services. In fact, I stated that my daughter was given 20 minutes of speech a week. Again, I can not speak to what they are doing now, but I have had many conversations with the new SLP and I am THRILLED that they have finally hired a qualified professional.
I love JMS. I consider the school and it's students part of our family. I do not think it is an appropriate placement for my child at this time, but that is fine. I love all the students and the staff. I believe that my daughter's Kindergarten teacher is the best teacher of the Deaf working in the world today. Every time we walk into an activity or into the school, we feel like we are coming home. JMS was the place that welcomed us, helped us give our daughter language, showed us what a success she could be. It has it's flaws, but it is a wonderful choice for some kids and will forever have a place in our hearts.
And lastly, I don't think that I have ever said that you are making mistakes. I have given my opinion, but I have certainly never thought for a second that you would substitute my judgement for your own. I don't know you from Adam. I am just a person who happens to read your blog. I have had people tell me that I am a child abuser and that I raped my daughter's body when we gave her an implant...oh, well. They are just another idiot. I don't have to take your advice, and you certainly don't have to listen to mine.
I appreciate you bringing up your daughter's experience with her residual hearing before implantation. This helps support my point on why the glasses analogy does not work. If she could hear loud conversation pre-implant, then she knew she was missing something. My son could hear nothing below the level of a very loud explosion. He went from a world of complete silence to noise in an instant, and didn't like it.
ReplyDeleteAs for AG Bell. The reason why I think they attract a a particular group over another (IE Spoken language users over ASL users) is because of things like this, from their website:Through advocacy, education, research and financial aid, AG Bell helps to ensure that every child and adult with hearing loss has the opportunity to listen, talk and thrive in mainstream society. With chapters located in the United States and a network of international affiliates, AG Bell supports its mission: Advocating Independence through Listening and Talking!
AG Bell is an organization established for the advocacy of auditory and oral language. They say so right on their website. Alexander graham Bell, the man for whom the organization was named, invented the oral only approach. He was also eugenicist who believed that deafness was something that needed to be cured out of our society. Besides oral education he also advocated that deaf people should not be allowed to marry other deaf people because that would only lead to baby deaf people. So, that is why I believe that AG Bell attracts only certain people and certain professionals. They say it right on their website. They are about an oral only approach.
That's just their natural reaction to CI kids who don't use spoken language. That if they can't pick up a language using auditory training, then it is not the device itself, but the child. CI children get easily labeled as having other disabilities or wasn't implanted young enough.
ReplyDeleteYes, people can hear with CI but adaptation have to happen for them to make sense out of those noise they hear. It is nothing like normal hearing at all.
I do know the history of AG Bell (and he certainly did not invent oralism, the first person to open a oral school in America was Samuel Heinicke in 1773, almost 100 years before Bell was even born. As well as the Braidwoods who had been teaching deaf kids orally for many years before Gallaudet came looking to study educating the deaf under their methods, but when they asked for too much money, he went to France and met Abbe Sicard instead.)
ReplyDeleteAlso, while Bell himself supported eugenics, many great minds of the time did as well. If you hate him, perhaps you should change your opinion about H.G. Wells, Theodore Roosevelt, George Bernard Shaw, and many others. No, I don't like eugenic, and I believe Bell was wrong about SO MANY things, I do not hold the past against the people who support the organization today. (Though I will not affiliate myself with ANY organization that does not support ALL options for children with a hearing loss, so that leaves me against them as well as Deaf Bilingual Coalition, as well as many others.)
Also, yes, AG Bell supports listening and spoken language, but NAD supports ASL. It doesn't have to be an OR situation (at least in my view). You take take the best information, from all sources, and use what you need and discard the rest.
I guess my question about AG Bell, was a little different than what you answered. I want to know why, in your opinion, do the people in the organization, have so many children who do successfully use spoken language? With the vast majority of kids with CI's being born profoundly deaf and I believe that the majority of those kids are given some sign, at least pre-activation (I have only actually met one family who didn't know at least a little basic sign, even at oral activities, when the devices come off, signing happens), why do you think that so many kids learn to listen and speak, and learn it fluently and without huge struggles? Why is the rate of non-use of CI's in people implanted as children so incredibly low?
First of all, I never said I hate Alexander Graham Bell. I may hate some of the ideals he was proponent for, just like I hate certain ideas that Theodore Roosevelt supported. They were misguided and flat out wrong.
ReplyDeleteI will not make this into a debate between the path and techniques you have chosen for your and the one we have chosen for ours. I have said in almost every comment I have made here that I am happy that you found something that works for your daughter, and have even commented on how amazing she is. I am not trying to belittle your choices. They are yours. I understand how much research you have done concernig those choices, and that none of them were made lightly. I never meant to call into question your expertise concerning your child, nor did I do that.
I am asking that you pay others the same respect. People may research and see some of the same data you have, and feel a different path or outcome is better for their child. That does not make you wrong and them right. My issue with the blog post is that when I read it, it seemed argumentative. It seemed you were attacking the choices these parents made for their daughter, and telling how it was wrong. It was posed as a question, true, but it came across as argumentative. The question was really making the point, it seemed, that the reason this girl primarily signs and does not understand spoken language is because her parents made the mistake of encouraging only signing.
My only question is: So what? So what if they did encourage only signing, and she has a CI? Why do we need to analyze that and decide if that was a result of the heavy signing or the heavy signing was a result of the lack of understanding? It's not my choices vs. yours, it's having the right to choose differently vs. everyone has to have the same measure of success. I am happy for you and your family. You are obviously a very responsible mother, who has gone out of her to give her daughter the very best. Just know, my wife is just as responsible, and while my son may be in that small percentage of CI failures right now, we have gone out of our to give him the best life we could as well. He is happy. He is smart. He is amazing, just like your daughter. He just chooses, right now, not to hear. And that is just as great as your daughter.
What bothers me is how you seem to assume what my decisions are. You mistakenly assumed that I would affiliate with AG Bell, you construed my statements about JMS as slanderous and you seem to think that suggesting a second opinion about audiology is saying that you are making mistakes. None of things are true. If you actually knew me you would see that we struggled and fought to get my daughter ASL. Insisted that she be surrounded by Deaf children and adults, spent thousands of dollars and hours getting fluent in ASL to provide language for her. I fought to change USDB so my daughter could have sign. I appeared on news programs and did interviews in conjunction with protests at the capitol building to force the legislatures to spend money on JMS. I have fought the good fight for ASL and for Deaf kids. Why is it that because my daughter now chooses to speak that you see me as some oral-only, mainstream pushing, anti-ASL monster. I advocate FOR ASL for all kids with hearing loss. You have sorely misjudged me.
ReplyDeleteOh, and I apologize for using the word hate in regards to Bell, but you do have an entire post called "Why I don't like Alexander Graham Bell".
ReplyDelete