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Respecting Choices

Note: it has come to our attention that DeafRead included a link to our blog without our authorization.  The inclusion of our post Respecting Choices on the blog aggregate DeafRead  in no way represents an affiliation with DeafRead or sponsorship of DeafRead by Auditory-Verbal Parents.

Amy: The headlines lately have been about the case of the boy who, with his family, is resisting chemotherapy for a highly-curable form of cancer.  How does this pertain to our blog?  Frequently, we parents of kids with cochlear implants are given the riot act about choosing to implant our children (and spoken language) for our children before they are adults and “can choose for themselves.”  When is something a parents’ right, and when is it the right of society to decide– or, in this case, the right of a small faction of Deaf Culture advocates to decide?  Recently, a group calling themselves Deaf Bilingual Coalition has argued that all children have rights to sign language as their primary, native language.

Melissa: The question is where is that line that defines parents’ rights vs. the child’s rights?  When can or should the government step in?  In the case of this boy, I think it was absolutely right of the courts to step in and order his parents to provide him with treatment.  He has a highly treatable form of cancer, and, by denying him treatment, to me his parents were committing child abuse because otherwise he would most certainly die.  Another instance I believe may be on the same side of the line is childhood vaccinations.  While I do believe parents should not have to vaccinate a child because of medical reasons, such as allergies to an ingredient in the vaccines or a family history of autism following vaccines, I do not believe that schools should accept children who are not vaccinated because the parents choose not to for religious reasons.  While the greatest risk is certainly to the child, the child also poses a risk to those who are immunocompromised.

What I feel is firmly on the side of the line of unequivocal parents’ rights are choices in deafness, both medical and educational.  During Rachel’s early years, we were verbally attacked by an ENT, an audiologist, a school principal and medical professionals for not teaching her to sign.  They gave us their “advice” despite our not asking for it.  Once cochlear implants in children began, especially once they received FDA approval, the signing deaf community became vicious with statements, including saying that hearing parents are incapable of raising deaf children and that their children should be taken away from them and raised in the signing deaf community.  (The rebuttal I always wanted them to answer was whether this also meant that they were unequipped to raise their hearing children and so should have the hearing community take them away.)  Cries of “child abuse” for implanting our children were also frequent.

What amazes me is that this type of absurdity still continues today with extremist groups, such as the Deaf Bilingual Coalition and Audism Free America, fighting to take away parents’ rights to make decisions about their children’s mode of communication and whether or not to implant their children.  We could so easily turn the tables and point out that, in this day and age with the now 20+ year history of implants in children proving how effective these devices are and how greatly children who learn to hear and speak with CIs can benefit, perhaps it is child abuse for parents to intentionally opt not to implant their deaf children and to raise these children with ASL as their only means of communication.  When a child is implanted at a young age and is taught to use that CI hearing to learn to hear and speak, that child can then grow up to make the choice of communicating primarily through spoken language or through sign.  However, a parent who opts not to implant and to raise a child only with sign irrevocably takes that choice away from that child because, while children can learn to sign at a later age, the window of opportunity for the brain to learn to hear starts to close greatly by age 3.  Thus, one might argue that the parents have limited that child’s future options.

Do I think, though, that there should be a law mandating that all deaf children receive CIs? – Absolutely not because, as much of a proponent as I am of CIs and the Auditory-Verbal approach, I am even more of a proponent of parents’ rights to make this choice.  I was amazed at the gall of those who gave us their unsolicited opinions and provided us with only biased information when Rachel was a baby.  What I have worked for over the past 22 years is for all parents to have access to accurate information so that they can make an educated choice.

Amy: I agree regarding parental choice.  There are many areas in which our country ensures wonderful freedoms… and having the choices regarding their children’s’ upbringing is one of those freedoms.  We have the right to homeschool, to choose a private school, to take advantage of free education or some mix of those three.  We have the right to spend time more with our kids or choose a profession– or a mix of both.  Believe it or not, in some countries, when your child is a toddler or preschooler, you don’t get to be home with them, like it or not!  We have the right to choose their physician, choose what activities or music lessons would suit them best.  We have the right to refuse medical treatment that we deem inappropriate, and we can modify vaccination schedules based on their physical needs.  Parents decide religious education.

Similarly, the specifics of language are up to parents.  Of course, I believe that listening and speaking will allow for the most opportunities in a world where most people use spoken language, but there are children who will never be able to speak for physical reasons.  And, if parents decide to raise their child in a purely ASL environment, that is their choice.  I may disagree with that choice if the child is capable of speech, but I have no right to intervene.  Recommend if asked?  Yes.  Create hate-filled emails and send them?  No.  I receive hate mail regularly from apparent adults who think it’s appropriate to call me a racist and proclaim that I’ve committed GENOCIDE (!) for giving my children the gift of speech.  Bandying around words like “genocide” is not only unfair, it’s dangerous.  We should save that word for the real thing.

Melissa: Those hate-filled emails and blog posts and comments are unbelievable.  Rachel and I have both received them.  One recent one that she received rambled on for paragraphs and then said that the next time she would hear from this guy would be face-to-face.  We actually filed a police report on that one.  I cannot fathom what causes these people to act so immaturely and so irrationally.  I have even written into the blogs that they do nothing but chase hearing parents far away with their hate-filled rhetoric and that they would do far better to present the positives of their lives.  Yet, they continue to spew hatred and make threats and false accusations.  They really have no clue what it is to be a hearing parent of a child born deaf today.  What’s more, they have no right to try to force their views and ways on us.  Rather, they should only be presenting information positively and let parents make their choices.

Filed under: Amy,Melissa — Melissa Chaikof @ 1:03 am

18 Comments

  1. Amen, Sisters! My one and only point has always been in the blogosphere is that I am his parent. I chose AV for him. I quit my job, worked with him intensively, missed about 2 appointments in 5 years, and you tell me that I’m wrong. He listens, he speaks, he attends a regular ol’ school with hearing peers, he can order for himself at Chick Fil A, he changes his own batteries, he argues with his brother, he tattletales with the best of them, he can hear me from his room, he lipreads in the bath, he can hear someone when his back is turned, and the list goes on! I’m wrong? I’m hurting him?

    My point to most, which they won’t accept, is that you can’t compare the lives of the older Deaf adults to my son or your children. It’s just not completely comparable. None of our children go to Oral school where there are claims of abuse. We don’t jerk their heads around and make them repeat what we’re saying. What we all have done is natural. Until they see it for themselves…..true AV I mean….the feud goes on.

    Comment by Debbie — June 12, 2009 @ 12:51 pm

  2. Well said. My theory with some of these emotional extremists is that they seriously need therapy. They have been so damaged by their own upbringing, that they can’t get past their own emotional baggage to talk calmly about things as they are today.

    I agree with them that without current technology, trying to raise a profoundly deaf child using oral only is bound to fail. Which is what happened to many of them. But they cannot compare their experience with today’s kids getting implants by or before 12 months of age. But they simply cannot get past their own baggage to see that. Without the therapy I mentioned above, they probably never will.

    Comment by K.L. — June 12, 2009 @ 6:26 pm

  3. I think by calling them “extremists” and “in need of serious therapy” would open old wounds. Just leave them aloone and let them do what they feel is justified. Their experience growing up are usually very real and they do not want it repeated in their future deaf generations.

    Before you jump into conclusions of who I am. I am a Deaf parent of a bilaterally implanted child. I am a believer of educated parental choices: however, by not allowing signs to a CI child at a very early age is like a gamble. I think it is best to give the child all of the tools to be able to succeed in life.

    There are CI kids at my child’s former oral school who arent thriving in a total aural/verbal environment. Know what, it may be a little too late for them to learn sign language since they already have some language delays despite their ability to speak.

    My child in my opinion is a successful Ci user. She prefers to speak for herself if in a non-signing environment and has hearing friends. She still prefers to have a sign language interpreter during assembly and classroomlectures because she knows what she is missing even with FMs and mics , she still misses out on some information. This is when knowing sign language comes in handy.

    Yes, it is ultimately the parent’s decision, not the Deaf communiity. I apologize for the threats and unreasonable comments by the few. Please just understand them and they are deaf just like your child/children.

    All my best!

    Comment by nacpac — June 13, 2009 @ 12:51 am

  4. As a former DBC core member I truly appreciate this blog. Initially I joined DBC because I wanted to contribute something back to the bilingual cause only to learn that they were extremists. Naturally I resigned shortly after I got deep enough within the organization enough to know what they really stood for behind the curtains. Nothing but full of Deafhood agendas. Behind the curtain they literally promoted so much hatred for hearing people, oralists and cochlear implant users. This much was invisible until several former DBC core members learned about me and shared their DBC experience with me. Upon realizing that I was not the only one with same concerns I made a decision to produce numerous blogs / vlogs exposing the full truth about DBC and eventually AFA.

    End result? DBC lost its fund raising power. AFA is seen as a by-product of DBC. Let there be no doubt about it…. their reputation is permanently tarnished. For that I received numerous threats from many different directions including a death threat coming from an individual. This is how they operate behind the curtain.

    Regardless of whatever happened, the sticking point for me was Parent’s Rights. DBC and AFA have been desperately trying to tout hearing parents as the cruel party for not choosing ASL but the same could be argued about parents that choose not to use available technologies and techniques to enhance child’s skills in every aspects.

    For those that do not know me you will appreciate the fact that I came from a very large deaf family lineage, in which I’m carrying the 7th generation label with my boys carrying the 8th label. I grew up with nine aunts / uncles and deaf grandparents. It’s a little wonder why these ASL power house and deaf power rats are very upset with me as if I was some sort of a traitor. What they failed to comprehend is the importance of holism theory, that of understanding wholeness rather than parts. Instead they seem to be stuck in the world of reductionism.

    Great blog!

    Comment by DR Hocokan — June 13, 2009 @ 4:33 am

  5. nacpac, you said: “There are CI kids at my child’s former oral school who aren’t thriving in a total aural/verbal environment.”

    And, I do wonder why the parents of these kids are not here or at Deaf Read. I also wonder why we don’t hear too much about it in the blogosphere. I have heard similar stories too from teachers of the deaf in a mainstream setting. It would be nice if the real stats are out there and accessible.

    But, this post made a good point. I’m definitely all for choice.

    Which also brings up another issue about C.I., we hear lots of good things but, rarely do we hear the bad stuffs. Sarasera posted a ‘good, bad, ugly’ post which is something more of what we need to see. There’s nothing absolutely perfect about anything, and that being said, being informed is knowing all the good, bad and ugly.

    Comment by Candy — June 13, 2009 @ 5:00 am

  6. Hi,
    Well said! AVT and ASL combined will help to expedite the process of speech, language and hearing skills. Most early intervention Ci kids below age of 3 have no problems with stand alone AVT.
    I’ve witnessed a parent with pro ASL while the child has Ci at the age of 16 months old didn’t produce any good results with speech and hearing. It’s a waste of her health being by having a CI and focusing on ASL only. I don’t understand why would a parent do a such a thing without following the doctor’s recommendation.
    My son has done exceptionally well and lot of people were amaze how well he speaks and how well he hears also he signs fluently with ASL, too.

    Comment by Russell E — June 13, 2009 @ 5:15 am

  7. Good Blog as usual!

    Parental choice is the key. Early stage intervention helps to gain the awareness. These words, “Early detection and Stage” have saved so many people’s lives. We should be grateful to know these important words. Awareness is the key word to promote everywhere.

    I was told that there are over 100 CI students with non-ASL who are now in the mainstream class, not in the deaf program at the Public School. About below 20 CI and deaf students are in the deaf program. So, it’s the reality in the 21st century. It’s their new generation.

    It’s interesting to see how the justice system that includes the medical and health issue on the cancer and young patient and the parents. It’s about the death vs. life matter. I know it sounds crazy for any parents who heavily involve and believe in religion life. Medicine vs. Natural.

    Comment by White Ghost — June 13, 2009 @ 1:23 pm

  8. Good blog.

    Right now, my son has a CI evaluation at the end of this month (he is asking for it and I am going ahead with it.) He’s very aural and there is no crime in it. At home, we use ASL, but outside of home, he chooses to speak and listen. He recently got into Honor English class (for academically gifted students) for next year and takes Advanced Math in the mainstream middle school. Same goes for my daughter who is hard of hearing, preferring to talk and listen. My daughter recently spent a week at Indiana School for the Deaf, attending Leadership and Literacy Camp and she had fun there. It is all about respect for cultures and comfort zones.

    Again, it is about early intervention and the respect for parents. As long as the parents make informed decisions and are willing to follow their cihld/children’s lead, good degree of parental involvement, etc., the successful outcome is guaranteed.

    I am a deaf parent of 5th generation of two deaf kids from my husband’s family… one being evaluated for CI and another just HOH.

    Comment by Karen Mayes — June 13, 2009 @ 1:46 pm

  9. Hello! I completely agree with you about the whole unequivocal rights of parents to choose from viable options, both medically and educationally. For me, that’s pretty black & white. What those options are though, are a bit of a gray area.

    AGBell has made wonderful strides in presenting a wide-ranging platform for options, in providing the resources to support those for which it was clearly established to support (speaking and listening methods) , and in a supportive manner, pointing parents to the right sources for non-spoken language (NAD, Gallaudet, state resources). The only stupid thing I’ve seen come out of from that org. was the letter to Pepsi, and even there, all they did was make a petty issue out of asking for equal coverage for non-ASL folks rather than celebrating one group’s success in a mainstream venue — they didn’t protest against ASL.

    AFA? Any organization that fights against options and access to hearing aids and cochlear implants, or protests medical coverage for deaf people should be run out of town on a rail for eating its own.

    I disagree though on categorizing DBC as an extremist group. Yes, DBC’s habit of standing outside AGBell conventions is not productive, and serves only to fracture the community, not to build bridges. But I think the DBC has great potential to open up access to ASL, which I find to be pretty much lacking in general, and should take a page or two from the very successful structures employed by AGBell and AVT groups in getting communication and educational methods out there.

    What’s tough is to see some parents make decisions without having access to a full and unbiased range of choices. That’s where you hit gray areas. Children have the right to language access (not any particular language). ASL should be an option, a good one for deaf children. For many hearing families and their deaf children, it really isn’t. Equally, CIs should be an option, a good one with lots of support. For some it still isn’t — we need more support in schools, more SLPs trained in the specific needs of kids w/CIs.

    I speak from experience: Li-Li is a 3YO bi-bi-bi baby: bilateral CIs, equally fluent in ASL and spoken English, and educated at a bilingual school for the deaf. But this was the result of a lot of hard work by lawmakers, by the state and early intervention, by our hospital, by the director of Early Childhood dev. at The Learning Center for the Deaf, by our local school district, and by our family. And we’re in a rare situation and time in which that all came together. And the hardest part of all? Integrating ASL into our lives.

    We need a group like DBC, if not DBC itself, for every other family across the country that isn’t so lucky. AGBell points to NAD for ASL and manual communication methods. We need AGBell to be able to point to a group that provides the bilingual equivalent of AGBell’s AVT and Oral resources. We need a group to make the ASL approach a viable option for more people. That group needs to visibly and emphatically discourage anti-CI activity, and develop an implementable infrastructure that supports what they are preaching (making ASL available to children) or it’s all pretty talk that goes nowhere.

    Only 500M worldwide use ASL, there’s not enough baby sign in use in hearing families; good, certified ASL teachers are few and far between; ASL isn’t offered as a language in most schools. Right now, in most places, it’s not really viable for many hearing families with deaf kids to incorporate into their lives in a way that would justify the enormous amount of effort it takes to get fluent. ASL proponents can make the argument that it’s a right and it’s necessary until they are blue in both hands, but that isn’t going to make access to ASL possible. It’s not “natural” — my child won’t suddenly begin communicating with ASL in a vacuum — it’s not cultural, my child’s culture is that of her family, and it takes a lot of effort and a lot of access to learning opportunities for the whole family.

    Please forgive my ASL rant on an AVT-focused blog. I think AVT a great approach: total immersion is the preferred method for learning most second languages. I understand why ASL isn’t a part of it. But you brought up access to options. In my family’s case, we wanted, and Li-Li’s learning ability and history seemed suited more towards a bilingual approach — and we are very happy with her progress. But we really need a group that is as supportive of bilingual learning as AGBell is for speaking and hearing methodologies, and one that works in concert with AGBell. The respect needs to go both ways (I see it coming from AGBell, I don’t see it coming from bilingual organizations or from AVT parent groups).

    And we need to discourage ANY group that tries to limit options for our deaf children or disenfranchise a parent’s right to make those choices.

    Comment by Li-Li's Mom — June 13, 2009 @ 5:52 pm

  10. I do respect many parents make the right decision for their deaf children however in my personal opinion, Getting cochlear implant is unnecessarily because being Deaf is NOT a life threatening illness. I have been deaf for 44 years and I am still alive. I can communicate by using ASL (thru the interpreter). Again I can read and write too. I was raised in my large hearing family who don’t sign at all. We communicate well. ( I would say 70 % ) I still survive. Even I am very intelligent, I had missed out a lot due to lack of the proper Deaf education back in the 70′s here in Boston area. American Sign Language was not allowed in many schools until the early 80′s. in ’84, I later learned ASL I was ‘born’ at Gallaudet University and I love it! Even I had a lot of hearing with help with my hearing aid — still I had missed out a lot thou. Today I no longer wear it due to the bad case of vertigo. Getting CI is out of the question for me.

    As for Dr. Hocokon – I was told he personally opposes the CI and AVT for his own Deaf family (His fifth generation of the deaf family- can you imagine this?). I find very odd about him. He confuses me very easily. By they way …

    I respect every parents to make decision what is the best for their deaf children even with CI or without. I highly recommend them to get exposed by Deaf children and Deaf Adult Peers in ASL. — to make sure they don’t miss out a lot.

    As for me I have a hearing family, hearing co-workers, hearing friends and even hearing felines and I love them all. Even I speak fairly well, ASL is my most comfortable mode of communication.
    ASL is a very articulate and precious language.

    Best, Diane

    Comment by Diane — June 14, 2009 @ 2:50 am

  11. Diane,

    As usual you’re always confused or so the record seem to show. I do not oppose CI and AVT and never have. Because I did not choose to use them for my children it does not mean I’m opposed to them.

    Other confusion on your part. Fifth generation of deafness in the family? I spelled SEVENTH. Are you one of these people that can not read decently? Just wondered.

    Comment by DR Hocokan — June 14, 2009 @ 5:56 pm

  12. Diane, you aren’t honest. Respecting parents? *Scoff* You signed a petition against WI Insurance Bill. You, AFA, and DBC worked against parents who choose cochlear implants for their hearing impaired children.

    Shame on you, DBC, and AFA for conspiring against the parents of hearing impaired children. You showed us who the real enemy is… the ASL deaf Community! Why should we expose our precious children to angry and bitter deaf hate-mongers?

    Comment by Martha — June 14, 2009 @ 8:43 pm

  13. Diane —

    As for Dr. Hocokan’s seventh and largest deaf generations, it does not mean that he and his deaf relatives don’t always agree or disagree with the CI, AVT and the mode of communication. He chooses not to implant his children if he does not oppose the CIs.

    So, don’t expect every the long-deaf generations require to agree and disagree on these issues. Don’t expect everything from the longest-deaf generations.

    Comment by White Ghost — June 14, 2009 @ 11:49 pm

  14. Barry – there you go. You are the only one who is the most confused person that I have ever met. Again you seem to enjoy pushing other people’s button. What’s more you are a very controlling freak re: Using your son as a shield in the other website and give your hearing neighbors a hard time. Indeed you are a very well known person for causing too many problems toward the deaf community and even a hearing community too. Many are losing respect in you these days. Au Revoir!

    PS I am a very proud of myself as a deaf person in my first generation of my wonderful non-signing large hearing family! *Ya Ya* I don’t care if there is a fifth or seventh deafness in your family. It is not a big deal to me at all!

    Gonna be careful of what you have to say here otherwise the website owner will check that out.

    Comment by Diane — June 14, 2009 @ 11:50 pm

  15. Diane,

    Just a friendly reminder here… you are the one who said you were confused, not I.

    I enjoy pushing people’s buttons? For your information, some people like you have so many buttons so it’s quite difficult to miss. I get along with people who have fewer buttons and especially those buttons that are extremely difficult to locate. In short, learn to toughen up and get rid of your excessive buttons.

    Speaking of my son, he’s an intelligent individual and has demonstrated himself as a very capable individual and a brilliant vlogger. Unfortunately you can’t say the same about your child, can you?

    If you did not care about whether it was the fifth or the seventh generation then why did you bother talking about it in your previous comment? You really do sound very confused. Keep it up.

    Comment by DR Hocokan — June 15, 2009 @ 8:33 pm

  16. When my son was diagnosed, I was informed of two choices….ASL and Oral. We began our journey of becoming VERY THOROUGHLY informed. We found AV on our own. We visited several Centers/School, etc. We chose AV for our family b/c it “fit” all of us. After all, we, the parents and family, were going to be the primary language models no matter what we chose. My family is hearing, so I’ll make no bones about the fact that we were “bent” toward listening and speaking. I’m not ashamed of that, as some in the deaf community would like us to be. So with being “bent” that way, seeing children within ALL programs, it was decided to use the AV approach. When I say use, I mean heels dug in. I’m a teacher. You have “new math”, “whole language”, etc…Fads that come and go. There was no example of how “mixing” methodologies would benefit my child; however, the evidence was clear as to how AV would benefit my child.

    He’s 6. Graduating this month. Mainstreamed. Communicates with his family and peers. Hasn’t learned sign. Isn’t suffering because of it. Do you think if the need arises, parents like myself wouldn’t bend over backwards to do the same? Do you think after months of
    AV if it wasn’t “working,” we would have continued? That’s what many don’t get. It’s not that we are so ANTI ASL, it’s that we’re made to think we’re wrong. That’s what “gets our goats.”

    Thanks for those of you blogging here…and not making me feel like Satan for my choice for my child.

    Li-Li’s mom…as for DBC….I don’t think anyone should point to them. Maybe if they dissolve, get rid of their leadership, and begin anew? Maybe? but….most likely not. As for full access of unbiased choices…I was told about ASL and Oral….I found out about AV on my own…when I asked the audiologist about it the answer was “what is that?” “that’s far away!” So no, I didn’t receive unbiased information, but as a parent I did my part and found out about it on my own. So, I don’t believe there is a bias toward AV as much as some think (not saying you believe that). But when people meet my son, ask me my opinion, want to know how he learned, etc, I sure as heck spread my bias opinion….after all….that’s what I know, he knows, and what worked for us. I don’t knock any others, but I sure as heck tell them about our family.

    Comment by Debbie — June 16, 2009 @ 11:40 am

  17. I meant biased…oops.

    Thanks for the post, Melissa and Amy. Thanks for the interesting views and ideas out there.

    Comment by Debbie — June 16, 2009 @ 11:44 am

  18. Debbie, I am not anti-AV — we employ much of the AV methodology in our work with the little one. And I don’t think that AGBell is at all anti-ASL. I know some individuals are anti-ASL, and that’s absolutely fine with me, there’s nothing wrong with any of us having and expressing our opinions.

    But I do think there needs to be an organizational resource to support those who want to use ASL (or other manual approaches) alongside spoken language. I mentioned that DBC seems to have the potential to be such a thing — if they take certain actions to reverse what I see as some serious missteps. You say no one should point to them but not why that is. Why not DBC? And if not DBC, what do you see as a good resource for parents of deaf children who want to take the bilingual approach and teach both sign and spoken language, using learning methods and resources drawn from both the AV approach and from the best of manual communication approaches? AGBell shouldn’t be expected to provide resources outside of its mandate.

    Comment by Li-Li's Mom — June 19, 2009 @ 10:42 pm

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