Ben Fucht and his wife, Reeley, gave birth to a healthy baby girl, Shirley, on May 31, 1992. They were told by doctors that their daughter was born Deaf but that fact alone did not convince them, the parents, that something was seriously wrong with their child. Both Ben and Reeley were perfectly happy that their daughter was a healthy and joyful baby girl. Upon learning more about deafness, they decided to take the oral only route because, as the doctors stressed, it would provide a broader range of opportunities as opposed to the signing route. Through the first several months, the doctors and specialists, continued to direct Ben and Reeley to various materials distributed by the umbrella association known as the Alexander Graham Bell Association for the Deaf. Below is a brief explanation or time line of what happened to this family.
Case Scenario:
Daughter is discovered to be Deaf.
AGB immediately follows up with Mom and Dad.
Parents choose oral only route but decide against a cochlear implant.
Become members of the AGB association for the Deaf and hard of hearing.
Daughter gets fitted with hearing aids.
Daughter is 6 years old with limited vocabulary.
AGB suggest implantation since aids have provided little success.
Parents again decide against it.
Daughter continues speech and auditory training.
Daughter is 9 years old with a 5 year old's thinking.
Temper tantrums, screams and cries, frustration leads to rejecting her aids.
Parents decide to abandon oral only route and pursue learning American Sign Language.
AGB tries to convince parents that their daughter is a perfect candidate for a C.I.
Parents remain true to their desires and avoid the operating room.
American Sign Language becomes daughter's preferred language for instruction.
AGB abandons parents.
Hmmm...
By the age of ten years old, Shirley lacks a solid vocabulary, social skills, and shows signs of emotional and psychological stress in her behavior.
AGB's position on Mom and Dad's decision:
"If you do not do this (receive a CI), you are neglecting your child and denying them the opportunity to be a fully functional member of society. You will be restricting them to the Deaf world and not the world at large."
Yes folks, you read that right. Mom and Dad ended up being tripped up with guilt and as a result, stayed the course of the oral only route even when they had witnessed the little progress made with their daughter.
So what have we?
A young girl at ten years of age, who has been denied the opportunity to process information and to accumulate knowledge in the same timely manner as her age-mates.
You see, you have parents who have to start all over again, basically from scratch. They have to learn another approach as well as another language and this depresses them to the point that their motivation is completely shot. As a result they decided to send their daughter to the state school for the Deaf where she can acquire her new language, American Sign Language.
8 Years later, on May 28th 2010, Shirley graduates high school with honors and was voted by her class as the one most likely to succeed. She developed her trademark way of signing ASL and was considered by everyone to be one of the funniest story tellers. Today she is currently enrolled at Gallaudet University and is pursuing a BA in History. She hopes to one day inspire others to create history.
When asking her parents what they would have done differently, they replied:
"Learn sign from the beginning whether they (the child) have residual hearing or use an implant. This will ease the tensions between differences within familial issues and makes communication easier."
Fact: Parents who sign have more interaction with their Deaf adult children than those who do not.
Question: Who promotes this reality?
"...they decided to take the oral only route because, as the doctors stressed, it would provide a broader range of opportunities as opposed to the signing route."
ReplyDeleteThat was the first lie told to the parents. How many other lies can we detect in this narrative?
Thanks to this family for making their story known. It echoes many many others.
Did the Fuchts have another child, named Totelly?
ReplyDeleteWho promotes this reality?
ReplyDeletehttp://nc.agbell.org/NetCommunity/Page.aspx?pid=1218&srctid=1&erid=1554548
Who Should Attend this event on July 21-23 2011
Certified Listening and Spoken Language Specialists (LSLS Cert. AVTs and Cert. AVEds)
Professionals seeking LSLS certification
Teachers of the deaf
Audiologists
College and university professors in teacher/clinician training programs
Early interventionists
Speech-language pathologists
Supervisors and administrators of listening and spoken language programs
AGBell Listening & Spoken Language Symposium
July 21-23, 2011 Omni Shoreham Hotel, Washington DC
At the AGBell Listening & Spoken Language Symposium, they will train more people to tell parents.....
"If you do not do this (receive a CI), you are neglecting your child and denying them the opportunity to be a fully functional member of society. You will be restricting them to the Deaf world and not the world at large."
I will be there with many other Deaf citizens at:
AGBell Listening & Spoken Language Symposium
July 21-23, 2011 Omni Shoreham Hotel, Washington DC
Hope to see you all there!
Jeff, you still inspire us, keep blogging!!! many thanks to the parents sharing their story with us! Shame AGB, inhumane thing to do! See u guys in few weeks in DC!
ReplyDelete-CM
Playing the devil's advocate here....
ReplyDeleteWould that story be the same if the girl was born in say...2005 and got CI's????
Heye I know the hearing sibling,Truly, too
ReplyDeleteBen reeley shirley truly fucht family used to send out such lovely Christmas cards. Them all in their matching sweaters
And where is agb and co now that the girl is a growing.
Growin tired of...
- in a minute
- I'll tell u later
- nevermind
- it's not important.
Really the family all a laughing and a clapping and a slapping one on the back is not important q
Really u can spend hours chatting and it's all important or is it....
U shirley that is unimportant q.
Surely that is how u r made to feel in anything bigger than 2 or 3
But let's look at whAt could have been and should have been had not agb interjected itself into ur nest.
Let's check the reality of a bilingual home (a real one not one where they only sign when absolutely needed) and what do u see
U see the fucht family having a !ucking good time. Even when the bad times come they r ok cu they are not struggling w how to make the letter D or carrying around shame guilt resentment worry. Nope they ain't and how is that q
What is the MAGIC word q. ASL
It's so easy whole entire families use it. Rarely but when they do wow those kids and grand kiddies keep a comin HOME
Cuz if the option is a Christmas where a person has to "work for there words" versus hanging w my bilingual friends what is shirely surely gonna pick q
Reality requires getting real
Some no likey. Hence no namey. No facey. No hoody. No feet. Hence no movey as in on. The move. I know they get around.
And the fix it up chappies well they coming to a town and living room near u but no worries. We got feet and we ain't afraid to walk
Peace
P
JJ-
ReplyDeleteThe devil's advocate needs to recognize that the parents never would implant their child. They felt such was invasive to the child's being.
Children have better results now compared to 1990. However, one other thing that everyone should also take into account what the anonymous shared on my post regarding implantation of infants 6 mos-1 yr. (1/3 success 1/3 alright and 1/3 not too well) We will be seeing more success rate varying among kids because of implantation prior to 1 year old - the detection of any Learning Disabilities and other factors will bring the success rate down. There's no way to know at that age whether the child has normal learning capacity. Yet at the same time, those that do have normal learning capacity will do way better than those implanted in 1990. It will be interesting to see the results of those children implanted in the past 5 years when they reach high school age. Yes, it is a risk parents take. Still, I agree there's nothing wrong with adding sign language to the mix. Sign language does NOT affect a person's ability to retain their speech or listening skills. This is based on my own personal experience w/ use of HAs. I think that is one area where advocacy should be focused on. In a positive way. Reiterating that sign language does not take away the ability to listen and speak. I think this is critical because parents will react better if we don't "tell them what to do".
ReplyDeleteOkie, am outta here, celebrating the fourth starting in about 30 min and continuing til midnight on the 4th. Have a great fourth of July and stay safe, ya'll
Candy~
The parents were irresponsible for allowing their child to get to age 6 without a way to communicate. Why pass the buck? They were the ones who made that choice, it falls squarely on their shoulders.
ReplyDeleteMKP,
ReplyDeleteParents do what they think is best and sometimes that means doing what the experts tell them.
No expert ever says that it is ok for a child to go 6 years without language. They would have had dozens of IFSP and IEP meeting. They would have been told over and over that their child isn't making appropriate progress. It is their responsiblty as parents to make the decisions for their child, and they made the wrong ones. To push that off onto professionals is a crock.
ReplyDeleteHey,..it happens.
ReplyDeleteMKM, it is my experience, both personal and professional, that parents DO follow what the "experts" say, often clinging to it for years after it is already too late.
ReplyDeleteDo the members of an IEP meeting recognize the reasons for lack of progress? No. They may note it, go over evidence of it, bemoan it, discuss it to death, but in the end, blame the CHILD and often include the PARENTS for the lack of progress. Rarely is a major change in philosophy or school suggested in time.
The reason for this is that professionals are trained along the lines of their specific discipline and are reluctant to depart from it when a radical paradigm shift is indicated.
Hold on, MKM,
ReplyDeleteDO NOT PLACE ALL OF THE BLAME ON THE PARENTS! I do not appreciate your looking down on parents whose children struggle because society expects those children to fit society rather than the other way.
Most often the parents are following the advice of professionals who often string them along by telling them to try this option just one more year. Just one more year... EVERY YEAR, after year...until the parents are at their wits' end. That is when desperation drives them to finally arrive at the ASL option. That is often when the child is way past the window of opportunity for linguistic acquisition, and emotionally damaged.
This continues to happen today... aye, in 2011!!
These parents, like most people in North American society including both USA and Canada, look to doctors, and other so-called experts, for advice and often follow them, regardless of whether the advice is bad or not.
To exempt professionals from blame is quite deceptive and wrong. They are part of the system that is driven to mold Deaf children into the image of the Hearing ideal. Just take a look at the pressures for children to hear that is so overwhelming evident in many websites like:
Communicate With Your Child
http://communicatewithyourchild.org/
America is a staunchly monolingual country (ironic because it is purported to have no OFFICIAL language) where much ado is made about spoken English and the necessity of English. There are many myths surrounding bilingualism. There are many who fear that bilingualism will harm the acquisition and development of English (SPOKEN).
MANY parents continue to swallow the myth that ASL harms English development, because that is what they have been told over and over again by PROFESSIONALS who are perceived as the experts when in reality they are anything BUT.
Shel
Any time a child does not reach the goals in an IEP a change of services is warrented. They should either increase or change services as the services in the previous IEP obviously didn't work. How does anyone not understand that? If your child isn't making progress, do something different. Duh.
ReplyDeleteI think the "blame" is misplaced. Professionals do not have the ability to make the decisions for children, neither do organizations. The people who choose what language their children use is the parents, plain and simple. If a parent chooses not to sign with their child, that is their decision, no one elses.
If you want to sign, do it. No one can stop you. (Though, it is tough to get the resources to become a fluent ASL famly quickly. And that has huge ramifications on early language learning as well. But that is a different subject.) My daughter signs. She signs at her oral school, as do many of the kids.
You are the parent, suck it up. Do the right thing for your kid and if you are wrong, fix it, don't blame someone else.
(Though, it is tough to get the resources to become a fluent ASL famly quickly. And that has huge ramifications on early language learning as well. But that is a different subject.)
ReplyDeleteMeaning?
There are many areas that do not have services to help parents learn ASL. They do not have communities to allow the children access to fluent language models. They don't have a critical mass of students to allow free communication. They don't have qualified Teachers of the Deaf.
ReplyDeleteSo, if the parents aren't fluent users, the kids aren't.
and the internet doesn't provide a window?
ReplyDeleteopportunity beckons when seen moreso than heard. yet i'm biased right.
A child needs to be immersed in language. They need to the adults around them to be using it, skillfully, every moment of the day. They need the language used to be ABOVE their level, not just simple words and phrases. They need their parents to discuss their weekend plans, the rules of a game, car repairs, and more and be able to eavesdrop on it. That is the way children successfully learn language. They need to have contact with dozens of fluent language models, using their language, every day. How does a parent who doesn't know ASL, have a Deaf community or Deaf school near them provide this?
ReplyDeleteMKP,
ReplyDeletegood question,... i wonder who is the one reinforcing the wall that prevents interaction?
No one. It is just the reality of the world. There are only 500,000 ASL users. They can't live in every town in the US.
ReplyDeletewhoooo-ey,...something smells
ReplyDeleteThe reality of the situation is that deaf children need language. They need fluent, accessible language all their waking hours. There are two schools of thought:
ReplyDelete1. Parents know a language. They are skilled in it and can use it to explain the word to their children. The can bathe their children in complex, full, rich language as soon as their child has access to this language. So, the solution is to get the children access to this language as soon as possible through hearing technology.
OR
2. Children with a hearing loss have compromised access to auditory information, so they can process language visually. We must get these children access to fluent, rich language model of ASL as soon as possible.
The problem with #2 is that the parents don't know ASL. They can not provide that language model for their child from the start. It will take the parents years to get a strong foundation in ASL, so what happens t the child in the meantime? Where do they learn the language?
The research shows that a child's language level is in direct proportion to the mother's master of that language. (Which makes perfect sense since for the first 3-5 years the mother is generally the child's primary caregiver and language model.) So where does that leave the deaf child of a hearing family who is learning basic ASL? The child will still be left without language for several years, until they are in school and being overtly taught or until they are around a critical mass of deaf peers.
and I'm Deaf.
ReplyDeleteAnd?
ReplyDeletePrecisely.
ReplyDeleteHow about I start making three word comments that are not at all in response to other people's comments? Then I can share in your smug, undeserved condescension.
ReplyDeleteHmmm...how about:
"That's why frogs hop."
*Cue looking down my nose at you*
oh say can you see...
ReplyDeleteMKM: "...the parents don't know ASL. They can not provide that language model for their child from the start. It will take the parents years to get a strong foundation in ASL, so what happens t the child in the meantime? Where do they learn the language?"
ReplyDeleteThat's where we all need to get creative and work out some possibilities and ways to get there. Fighting the medical-aural-oral establishments isn't the hardest problem. The logistics of getting ASL to families is a more difficult challenge.
Wow, terrible start, wonderful outcome -- wishing this young lady so much success.
ReplyDeleteNot surprised that her parents didn't choose CI at the time -- clinical trials were barely completed and the FDA had just approved CIs for children the year before she was born, right? But I am surprised they'd have been given an AGB rush to implant: CIs weren't yet covered by insurance, not widely available, and there were no outcome studies.
It is unfathomable though that given their decision not to get an implant -- if that was really even an option for them -- they would have committed to a path that left their daughter without language for so long. Deaf kid: look into ASL. It's very hard to do, no question, but when the alternative is NO LANGUAGE? Is it even a question?
Looks like the parents are trying to shift the blame for their poor judgment to big bad AGB and that so-powerful brochure they picked up in a doctor's waiting room. And they feel abandoned, why? No holiday newsletter in the mail?
hey all!
ReplyDeleteHow about a bit of "thinking out of the box"? This Miss Kat's Parents' arguments are old and tiresome and poor ones to argue in favor of CIs and auditory-verbal training.
If all the income that has been spent on CI devices, research, development and marketing goes into the hands of Deaf-centered/ASL friendly leaders and thinkers into a ThinkTank or a research institute, imagine what wonderful possibilities and ideas will come out to ensure access to ASL fluent adults working with the parents and regional ASL bilingual schools with at least 50 Deaf kids at each level (elementary, middle and high) that are close enough to most of the Deaf kids all over the country, especially at elementary level, and then residential (with option for daily home commuting) for middle and high school levels. And with the Videophones continually improving in quality and access, the residential school kids can keep in ASL touch with families at home!
Imagine all the potential common-sense and beneficial research on bilingualism within this very positive audism-free context!
The possibilities are many! Yes, we can! And since it's been claimed that the community is small with "only" 500,000 people, the cost won't be that bad. Rid of all the unnecessary auditory-oriented professionals for extra useful bucks going directly to healthy, positive, community-based (huge relief for parents too) ideas and practices.
Any investors? If none, blame it on audism and deficit thinking on EVERYBODY'S end -- and the presence of AGBell and the falsehood of the Auditory-Industry Complex. Founding the Deafhood Foundation is part of the long-term investment, so this is not just "lip-service".
Yes, we can!
Ella, how are you going to get Teachers of the Deaf in schools with less than 100 people? There are 19,335 cities in the US, how are you going to get 50 Deaf students in each one? The numbers simply do not add up. You can not simply create Deaf communities in every town to meet the needs of one child. That is why there are regional programs, there simply aren't enough deaf kids to have the structure to support them locally.
ReplyDeleteAlso, you haven't address the issue of parents not being language models. If the parents know ZERO sign when their child is born, how are they going to give the child language? The child will still be language deprived for several years unless they are sent away to a Deaf school or happen to live in an area with a sizeable Deaf community.
ReplyDeleteLet's be honest, ASL kids with hearing parents, even those who have signed from the start, have language delays. It is a fact.
Oh, and one last thing Ella, CIs have brought tremendous good to over a hundred thousand people. There is no reason to take money away from them. My child loves her devices and for you to ask her to give up future improvements and benefits by stealing the money for research and development in cochlear implants is disgusting. Just because YOU don't want one, don't try to take away her right to enjoy hearing.
ReplyDeleteHello Miss Kat's Parents!
ReplyDeleteOh those are good POSSIBLE questions to consider during strategizing just like what I'm sure AGB and AIC would consider during their audist/cultural genocide strategizing. Sorry, dears, I gotta see some serious investments in actually answering those questions AND MANY OTHERS from the Dead cultural viewpoints, and this forum isn't good not appropriate for that. The issues are too serious for this kind of forum. You game? You wanna invest too?
BTW, I have THREE Deaf grandchildren 5 and younger. I do invest in them And the healthiest possible BILINGUAL community they have a right to grow up with and do their own investing. CIs definitely are too vague with their results and too audist for me to even consider them or encourage them. And this coming from someone who's family totals about 200 years living as Deaf people in this greater world context, having gone through the Dark ages of the first Oralist colonialism between 1920's and 1960's, during the powerful Deaf Resurgence between 1870's and 1990's and now witnessing and working against the 2nd wave of Oralism colonialism taking place even on DeafRead, among my grandkids' peers, my children s potential workplaces, the Deaf organization's health.
I'm talking about the potential to wipe out or screw up a whole vibrant community that many many many of us Deaf AND hearing people are living in for what? For one kid's CIs costing over $100,000 plus more thousands or millions to keep the VILLAGE from contributing to her and her family's HUMANITY.
You prefer investing in THAT? hmmmm.
I prefer investing in my child and her future and her future includes cochlear implants. She has language and is bilingual as well, just not in the way YOU prefer.
ReplyDeleteYou refuse to answer, because you have no answer and are simply dodging the hard question, but you are doing it with much panache, so congrats.
Each parent must decide what will benefit their child. I don't give a rat's behind about your Deaf generations, that doesn't impress me, sorry. Just because you chose not to give your children the same opportunities I gave my child does not mean either of us are wrong.
I don't believe CIs will wipe out the Deaf community, unless the Deaf community insists. I know many Deaf adults who have CIs. I know plenty of Deaf adults who are chosing CIs and spoken lnguage for their deaf children. There are deaf adults working at all the oral schools my daughter has attended.
The Deaf community is changing. People like you are afraid, but luckily there are much more open minded individuals. Your position is losing ground. Your prejudiced views will die out like old school racism, and will only remain in the dark corners of ignorance. My child (and all those like her) are the future.
Oh geez, Miss Kat's Parents,
ReplyDeleteAre you for real? Never seen such arrogant, narrow minded hearing folks in my 50+ of living, working and traveling among the hearing people of various backgrounds.
If one is truly human, s/he is not an island. Nobody in right mind or with good heart actually lives in isolation nor raises their children to be intentionally ignoring their COMMUNITYs history, values, heros. But I've seen oppressors do that to the people they wish to control to exploit them for their own benefit.
What future are you visualizing for your child that the vibrant, full of potential, audism-free Deaf community doesn't offer? Oh that's right, you arrogant hearing so called independent (isolated) parents believe you know all and MORE than a mixed Deaf family with 200 years of experience in bilingualism and biculturalism and Oralism with the masks of benevolence.
Why then are you hovering around these pages and DeafRead? Why are you researching the Deaf community if you have NO intention of totally absorbing their wisdom and history and vision for future? We must be doing something very attractive OR scary for you?
Yes, Audism is scary and unhealthy for BOTH sides. So I don't blame you. I just have no tolerance for people who do not try to understand and appreciate the blessings of cultural diversity, especially when they have children that are wonderfully different than them, a gift for them to become BETTER human beings. Your remarks show us that there's a long road ahead. No worry. We are experienced with patience.
It's disturbing to see some parents who have only been raising deaf children for a few years, telling a number of deaf individuals how wrong they are. As far I am concerned, these types of parents are nothing more than self-appointed experts. It's the same with people who read a piece of information on Wikipedia and suddenly they are the world's best expert on the subject they were recently enlightened on.
ReplyDeleteYes, they may be raising children who happen to be deaf or hard of hearing. However, they have no idea of what to expect 20 years down the road, despite what they may believe. Life is unpredictable, especially when it comes to raising children. You never know what's in the store. What I'm saying is that raising children is a learning experience and it's one that will continue for the rest of your life. People need to keep their assertions to themselves if they are not open to constructive analysis. You should be open to sharing your experiences rather than playing the blame game.
Some people can dish it out, but they need to learn how to take it too. Or even better, don't dish it out and then you wouldn't have to take anything.
I know a large number of people who were raised in various learning environments and I have to say that some turned out fine, some did okay and the others didn't do so well. However, I do believe it had a lot to do with how their parents raised them, not the schools.
Ella, you are clearly completely ignorant. My chid IS involved with the Deaf community. She always has been. Luckily, we avoid people like you who would wish to take away her opportunities. She IS bilingual. She easily interacts with hearing and Deaf people. Her future includes the entire world and access to communication through written, spoken and signed language.
ReplyDeleteYOUR values are not the values of the entire Deaf community and you do not speak for them. You do not speak for the Deaf parents who implant their children and send them to my child's oral school. You do not speak for the Deaf people who support my child's right to choose her communication mode. You do not speak for the Deaf people who choose implants for themselves, and you certainly do not speak for the deaf people who choose to listen and speak.
The future of the Deaf community certainly includes childhood implantation and spoken language...because the present already includes it.
Roger, thank you for sharing your views about SOME "hearing parents" who dare to blatantly blast or reject Deaf history, wisdom and experience. Fortunately, many parents do not do that.
ReplyDeleteTrue, that Deaf people are often expert survivors of Oralism and audism in their lives, i.e. your comment about turning out "fine" despite backgrounds. Unfortunately, many do not succeed as well. Research show that Deaf people on the average have 40-50% experience-induced mental/emotional issues compared to about 25-30% in non-Deaf population (need to check for exact numbers & description tho) and Deaf people point to Oralism as the major culprit for this unnecessary suffering.
Miss Kat's Parents. time to face up to this question: is your child AUDISM-FREE? Is living under audism a CHOICE? If you say yes, I wonder who's the ignorant one.
FYI, what you said, how you framed it, is so AGBellish. Sigh. Quite insulting and boring so time to stop playing that game and start TRULY LISTENING.
prejudice is not pretty
ReplyDeletemuch peace,
Patti
I don't subscribe to your views, so I have no idea what you mean by "audism free". No one in her life looks down on her because she is deaf. She is doing great.
ReplyDeleteBUT, before she had her implant, her life was harder. She struggled playing with her cousins. They left her out. When she would go to the park, kids would avoid her, not want to play with her, because she could not communicate with them and could not understand what they were saying to her. We signed well, but her extended family and certainly strangers, did not. She was frustrated and didn't understand why the world could not communicate with her.
Her implant gave her the freedom to communicate with the other 99% of the world. It opened doors for her. Yeah, there is discrimination in the world, but just because my child uses ASL and attends a Deaf school does NOT suddenly make the world understand her.
Oh sigh. The more I read your comments, the more evidence of your limited understanding of Deaf World comes up..about the world where people have GLOBAL CITIZENSHIP, where fluency in sign language enables one to bond and communicate peacefully across national boundaries where the HEARING defenders have brought on wars, selfishness and chaos upon others. Can't believe you would so believe that CIs, rather than organic sign language and Deafhood, would enable one to "communicate" with 99% of the WHOLE WORLD????!!! Again so Evil Bellian in the argument here. Please once again learn or prove that you can TRULY LISTEN or maybe you haven't seen Victor Hugo s quote: What matters deafness of the ears when the MIND hears?
ReplyDelete@Miss Kat's Parents: Your harsh arrogance makes it difficult to accept your position. I realize you are not here to convert anyone, but your implied supremacy will get you nowhere, in any world that I know of. My impression of you is that you are deep, deep into a defensive posture and surely your child will pick up on that. It's too bad. I hope her Deaf friends can lift her.
ReplyDelete