Jezie
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FOR PARENTS ONLY
This section is intended for parents of deaf children, especially those who are seriously considering giving their child an implant. It is written by Deaf adults who are the grown-up children of hearing parents. So we can say that we understand your concerns, and those of your deaf children. We’ve been there, and whenever we revisit our families, we’re there again.
Note that we’re using the pronouns “he” and “she” and “him” and “her” alternately. What we say applies equally to your deaf daughters and sons.
THE BEGINNING
In the old days, parents whose children were born deaf were often unaware that anything was amiss until the child was, say, 3 years old. Deaf babies are exceptionally good at fooling their parents. They cry and babble just like hearing infants do, since these instinctive behaviors don’t depend on hearing. But when they reach the stage when hearing babies are starting to put syllables together to make words, and putting words together to make sentences, deaf babies aren’t doing this, and the parents, if hitherto unaware, begin to harbor suspicions. Why isn’t their child talking? Traditionally, deaf children were “caught” when they reached this stage, and rarely beforehand.
Nowadays, with the increasing reliance on newborn hearing-screening tests performed in hospitals, deaf babies are identified before they’re taken home. In many ways, this is good. If a baby is deaf, the parents should know right away, and take immediate steps to get language to her. Delaying the acquisition of language may have profoundly damaging consequences for the deaf child, since she’s at the prime age for language-learning, and if she starts late, may never catch up in school. Instead of waiting until toddlerhood (and wasting precious time), parents get the news within hours of the baby’s birth.
There is, however, a disturbing trend to send deaf newborns straight to the cochlear-implant clinic. The 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. They’re being steered in one direction only—towards the implant. They are told that the best time to implant is infancy, when a child is just beginning to acquire language. Any postponement could lead to irreversible delays in progress, as deaf toddlers, left to their own devices, fall further and further behind their hearing peers in language development. So parents can come under terrific pressure to make a commitment now.
We know that parenting deaf children involves making some exceptionally tough decisions. Parents need to decide what sort of communicative/educational approach they will take, and to make some sort of commitment to it. This isn’t always an easy task, since advocates of the oral/aural methods and sign-language approach may be putting pressure of the parents to commit to their way.
Of course, parents want to feel like they’re making the best possible decision. And when they get pressured by opposing factions, they sometimes fight back by choosing an extreme approach. Cochlear implants represent the most extreme of approaches: a surgical invasion of a child’s head.
OUR PERSONAL FEELINGS
We don’t believe that a cochlear implant should be installed in prelingually deaf babies and young children. If a child already has experience in hearing and speech before losing her hearing, and has become profoundly deaf as a result of sickness or trauma after learning how to speak, or was born hard-of-hearing but lost her hearing gradually, we have no objection to the implant, because the child is simply reconnecting with her previous mode of communication. That child already has a basis for spoken and aural language. An implant will enable the child to build on the existing foundation.
If, however, the deaf baby or child is congenitally, profoundly deaf—that is, he has no foundation in aural/spoken language—then we don’t feel that an implant is suitable. It causes sensory confusion. Deaf children are, and should be allowed to be, visual—not auditory—learners.
I don’t believe that you can make a born-deaf child comprehend sounds any more than you can make a born-blind child appreciate colors. A child who is born profoundly, bilaterally deaf has no real concept of sound—let alone speech. It’s alien. And the CI isn’t going to magically unscramble this. It is far better to give such a child immediate access to sign language, and use that as a foundation from which to proceed. The next step is to teach the child to read and write. The speech/speechreading training can follow. Speech and aural training should not be the primary focus of a deaf child’s education.
A BLIND COMPARISON
In a way, blind children have an easier time of it than deaf children do. When a child is born blind into a sighted family, the parents, siblings, and relatives quickly accept the fact that he’s blind. They usually don’t waste much valuable time shopping around for treatments and cures. They may enroll him in a preschool program for blind children, and proceed to send him to a school for the blind. We feel that our society accepts and respects blind people and those with all manner of physical disabilities—all, that is, except deaf people. Society is willing to accommodate persons with mobility handicaps and those who are blind—but deaf people are told that we should get ourselves fixed. Fixed, that is, with cochlear implants.
SIGNS OF LOVE
One thing that parents of kids with implants always tell the media is how much they love their deaf kids, and to make an explicit connection between their love and the implant. They say things like “We wanted to give Jimmy exposure to the wonderful world of sound because we love him.” No, they insist, they don’t hate deaf people (even if they shun them), and they respect ASL (even if they refuse to learn it), but they are confident that the implant is in their child’s best interest.
The greatest gift of love you can give your deaf child is to accept him as he is, and to encourage him to thrive as a person. Embrace your child’s deafness. It is a part of him. If you take the attitude “I love you, but I hate your deafness,” or “You’re okay, but your deafness is unacceptable to us,” you’re going to end up with one very confused kid.
How do you show your deaf child you love her? Learn to sign. Learn to communicate with her. You will get to know your child better through sign language than through speech training. Because a deaf child has to be taught language, she will pick up spoken vocabulary at a much slower rate than her hearing peers are doing. But if you use sign language with her, she’ll pick that up much more quickly. Young children pick up ASL so fast that in some cases, their parents have gotten upset about it. “Yes,” they say, “he’s learning—too well!!!” Their oral skills typically lag behind their signing skills. Focus on the signing for now, and, we assure you, the speech progress will follow.
We encourage you to learn sign as soon as you can. It isn’t that difficult. And the rewards are immeasurable. We’ve encountered all the excuses not to:
“It’s too difficult.”
“I don’t want to make the commitment.”
“It’s not useful in the real world.”
“There aren’t enough people we could use it with.”
“We don’t feel comfortable doing this.”
“It doesn’t feel natural to us.”
“I don’t like it.”
We’ve seen ’em all. And we see through ’em.
MIRACLE OR MISTAKE?
The cochlear-implant industry has run a fantastically successful campaign aimed at parents of deaf babies. Give your deaf child the gift of sound, they say. Give your child a magic key to success in he mainstream. With an implant, they claim, a deaf child can acquire normal or near-normal spoken language, just like hearing children. They utilize carefully-manipulated data to show tremendous gains in language-generating and speech-processing ability.
In reality, there is no reliable way to predict how well a child will function with an implant, nor how rapid their oral/aural progress will be. The benefits accruing from the implant may be negligible. It’s an expensive gamble.
What quality of sound is the child getting? An array of manufactured electrodes can never replace the delicate and subtle sense of hearing. Some veteran CI users have disliked the way their implants fed “environmental noises” into their heads. So they switched their implants off, finding that they could better focus on work or play without them.
The CI doesn’t make a deaf person hearing. It is not a miracle fix. It does not constitute a bionic replacement for the delicate and complicated sense of hearing that has been lost or damaged. It enables the wearer to distinguish some degree of sound discrimination. After receiving an implant, a child typically needs extensive one-to-one auditory/speech therapy so that she can learn to interpret these electronic noises as human speech. There has been a wide variety of outcomes with the CI, ranging from the negligible to the excellent.
Think about expenses. Are CIs really a cost-effective measure? We have seen some extraordinary “statistics” that “prove” that it’s cheaper to give deaf children CIs and mainstream them instead of enrolling them in sign-language programs and schools for the deaf. But is it really? Implants cost $40,000 to $50,000 a pop, and we don’t think that includes the intensive speech-therapy regimen that’s required afterwards. Very few, if any, parents, we suspect, would opt for an implant if it wasn’t covered by health insurance. There is a persistent myth that a child with a CI can function just like a hearing child, but in truth, most, if not all, children with CIs need intensive, long-term, and expensive support in clinics and schools. And parents who want to learn to sign can sometimes get that free of charge. Some schools for the deaf operate early-intervention programs in which trained teachers visit the parents and child at home and play with him while teaching the family how to sign and how to read to him. Even if the parents enroll in a local community-college Basic Sign class, it’s still considerably cheaper than an implant.
Most children with implants ultimately decide to join the Deaf community. They learn sign language; they make it an important part of their lives. Some maintain clear speech, and continue to communicate orally with their families, while acquiring signing-Deaf friends. But most eventually shift to the signing community. So why delay? Why put the child through this intensive oral/aural/ speech-rehabilitation regimen when it would be more productive to give her a strong foundation in signing first?
Deaf children desperately need an enriched language environment with lots of visual-tactile-kinetic communication far more than they do intensive speech training. As we’ve already said, the speech training can wait. Language and literacy should come first.
BE WARNED!
In persuading parents to commit themselves to the implant, audiologists and CI clinicians may not present a strictly accurate picture. They may exaggerate the chances of success. They may downplay the immense investment of time and energy required in developing the child’s spoken-language skills. They may give a misleadingly rosy view of the outcome.
We have a deaf friend, “Steven,” who received a CI at the age of 35. Before he agreed to the surgery, he discussed the pros and cons with an audiologist. Steven was told that with an implant, he’d be able to use the telephone normally, to engage in telephone conversations just as hearing people do. Excited about the prospect, he consented to the surgery. After Steven received his CI and had it activated, he tried to carry on a conversation on the telephone, only to discover that he couldn’t decipher the garbled electronic sounds on the other end. After complaining to the audiologist, Steven was told that he could only engage in telephone conversations in which the other party answered “Yes” or “No.” He now considers himself a victim of deception. He had agreed to the CI only because he believed it would enable him to have normal voice conversations on the phone, only to find out that he was limited to he most rudimentary form of voice communication.
How typical is Steven? More typical than the dazzling successes that we’ve read about in the newspapers, magazines, and Internet accounts, we’re sure.
SUPPOSE THE KID ASKS FOR IT?
At least a few deaf children have told their parents that they wanted an implant for themselves. This, at least, was their conscious choice. Parents of these children, and we know of two such instances, discussed the matter thoroughly with the children first, did their homework, and investigated the pros and cons of the implant before committing themselves. In at least one case, a deaf girl who had gotten the implant lost most of her deaf friends. Deaf children with implants often endure hazing from other deaf kids: “Borg! Borg!” “Robot-ear!”
Most deaf children, when learning about what an implant is and what it does, are dismayed at the prospect of having electrodes surgically installed in their heads. But some are satisfied with the implant, and say they’re happy their parents made the decision for them. Others are unhappy about having implants and, for various reasons, stop using them when they reach college age. There is no consensus. The CI population itself is split in disagreement over the value of the implant. Some users, who had no technical problems with their implants, nonetheless decided to stop using them.
DEAF WILL ALWAYS BE DEAF
One thing that needs to be kept in mind: profound bilateral sensorineural deafness is a permanent condition. It cannot be undone with an implant. Deaf children who are born-deaf or early-deafened will always be deaf. They will be looked upon and treated as deaf by hearing people. Having an implant will not make them “just like hearing.”
How catastrophic is deafness? We recall an interview with Katharine Hepburn in which she said that Spencer Tracy’s life was tragic because his son John was born deaf. Can you believe that? But then, if you see deafness as a tragic affliction, both the parents and the children suffer. If, however, you look at deafness as another way of being human, your perspective may change radically. If you find yourself thinking despondent thoughts about the effect of deafness on your child and your family, we recommend that you connect yourself to a support system. Network with other parents of deaf children, and with Deaf adults.
In counseling parents to “accept” their deaf children, we don’t mean that they should choke down their grief and disappointment and put on a big fake smiley-face, but to learn to accept their child as a full-fledged person—smart, beautiful, capable, gifted. Each child has a unique contribution to make to the world. Your challenge is to help yours live up to his full potential. It begins with the family—the child’s first and most influential school.
BABY SIGNS: FOR DEAF BABIES, TOO
Denied access to real sign language, many deaf children have created their own signing systems, known as “home signs.” Home-sign systems have been documented and studied by linguists, and are a fascinating subject. But if deaf children weren’t denied access to ASL, there would be no need for hem to create their own systems. Home signs tend to be crude and grammatically rudimentary, lacking the richness and subtlety of real sign languages. It’s better to provide deaf children with an enriched sign-language environment than leave them to their own devices.
Signing is as natural to deaf babies as speaking is to hearing babies. Children whose parents sign to them from birth typically start signing before they can speak, because babies find it easier to sign than to articulate spoken words. Signing to babies accelerates language learning and speech. It does not retard it. The research of Acredolo and Goodwyn, among others, emphasizes the benefits of teaching hearing babies some basic signs. The advantages include fewer tantrums—babies who can communicate their needs and desires to their parents and be easily understood are happier and experience less frustration. This is something that Deaf parents have known for ages!
And if the benefits of signing to hearing babies are recognized, the same benefits apply to deaf babies. The difference is that while hearing babies can phase in speech as their spoken-language-processing skills develop, deaf babies should be encouraged to continue signing and utilize it as a primary mode of communication.
Books and multimedia packages teaching “baby signs” have been selling quite well. These books and CD-ROMs typically contain a mixture of signs adapted from ASL, and made-up signs. The number of depicted signs is usually limited. We recommend that parents of deaf babies use real ASL signs with them (and their hearing siblings). This will make it easier to phase in additional signs and encourage them to put sentences together. There won’t be any necessity of unlearning made-up signs. Parents can, of course, use made-up signs if they find them easier. If you develop a non-canonical sign that you feel more comfortable with, by all means, use it. Lots of Deaf people use impromptu, invented, and “play” signs. The important thing is to get language to the baby immediately and frequently.
A CUP OF JUICE OR A TANTRUM?
We’re sure that you recall reading about Heather Whitestone McCallum, whose mother, Daphne Gray, took a rigorously oral approach with her, enrolling her in an intensive oral/aural program and later, Central Institute for the Deaf, one of the most strictly-oral schools in the nation. (She learned to sign fairly fluently when she was in college. Incidentally, she now has a CI.) When she was young, Heather attended a “mixed” class for deaf children where she saw other deaf kids signing, and picked it up from them. Daphne did not approve of this, and used a form of “behavior modification” to discourage her. She wanted Heather to use her voice, not to sign.
In a children’s biography, and in her own memoir, Daphne is described as refusing to give Heather a glass of juice until Heather, who was signing something like “Juice, please,” articulated her request in voice. Daphne deliberately ignored Heather’s signing. Only when she uttered a vocal sound did she get the water. Oralists would consider this an effective way of compelling children to develop speech skills. Deaf people consider it cruel.
Toddlers are notorious for throwing tantrums. Many of these are caused by communicative frustration. The child isn’t deliberately acting bratty; she is trying to communicate her needs or wants and isn’t getting through. When little Kim is thirsty and wants a drink of juice, and tries to articulate her want to Mommy, but Mommy doesn’t understand her whining and frantic gestures, Kim is apt to get upset, and a tantrum ensues—wailing, crying, stomping, fist-beating. But if Mommy has already taught Kim the signs for “thirsty,” “drink,” or “juice,” Kim can sign to her, and Mommy understands immediately, opens the refrigerator, and pours Kim a cup of her favorite juice. Her immediate want satisfied, Kim can proceed with play and learning. She’s happy that Mommy understands, and Mommy is happy that Kim is able to communicate easily. Mommy can make a learning experience out of it, building on the signs Kim already knows to introduce new ones—“thank you,” “good,” “cool,” “oranges and lemons.”
Sign language is not a communicative crutch. It doesn’t make deaf children lazy. It doesn’t interfere with their ability to produce clear speech. It doesn’t retard their language development. It benefits them. It benefits them tremendously. Once you make space in your life for signing, you will see that it benefits you too.
WHAT WILL YOURS SAY?
Imagine your deaf child as a young adult, almost fully grown, going off to college. After deaf children graduate from high school (whether mainstreamed in a public school, attending a school for the deaf, or in a day or charter-school program) and go off to college, a number of them choose a signing environment like Gallaudet University, NTID, or CSUN. Then, when they come back to visit their families during semester break, what do you suppose they’re going to say? Their #1 wish seems to be, “Mom and Dad, I really wish you’d learn to sign so that we can have good conversations with each other.” Or they’ll say, “I wish you hadn’t listened to those doctors when I was a baby. I wish you’d learned to sign. I would have been much happier.” We have met many, many deaf adults who expressed disappointment that their parents hadn’t learned to sign. Anger and grief are common feelings in these people.
When deaf adults get together, they often discuss their families. What will your deaf child say about you? Consider the possibilities:
“The audiologists told me parents not to use sign with me, but they defied him and taught me to sign anyway—and I’m so grateful they did!”
“My folks wanted me to speak and hear just like a hearing person, and they wasted so much time pursuing that fantasy.”
“My parents decided to learn to sign when I was a baby, and I love them for doing that.”
“My folks refused to let me use sign language in our house. The doctors told them that if they let me sign, I’d never learn to speak properly.”
“My folks decided to enroll me in a sign-language program when I was a toddler, and my signing skills just took off like a rocket!”
“I was mainstreamed, and I had a terrible time of it, without deaf friends or support services. My folks never quite understood what I was going through.”
“My parents got me a cochlear implant when I was a baby, and it took years for me to acquire intelligible speech.”
“My parents were confident that I’d do just fine without an implant. They had faith in me.”
“Mine refused to believe that I was deaf, and kept taking me to different doctors to be tested. They wouldn’t learn to sign. I fell behind in school and never quite got caught up.”
WHO MAKES THE DECISION?
One big question, of course, is: who has the final say in deciding to give a deaf child a cochlear implant? Who makes the decision on behalf of the deaf child? The parents, of course. And who influences this decision?
Professionals in the medical field (audiologists, clinicians, doctors, surgeons, etc.) have shown that they have very little, if any, interest in what the Deaf community thinks or believes. For years, doctors have routinely advised parents not to use any signing with their children, despite the well-publicized benefits of a signing environment, and we don’t see much abatement of this trend. The implant doctors, as far as we can tell, shrug off criticism from Deaf advocates as the rantings of retrogressive loonies and fringe fanatics.
We also question the basis for the decisions being made by the parents who have no previous education on the issues. Who is handling the task of discussing the communicative choices with the parents? A doctor who has a negative opinion of signing? One who links signing with low expectations? One who has an interest in promoting implants? Just who is presenting the options to the parents? Are the various possibilities (and each has its advantages and disadvantages) being presented to them in a fair, unbiased way, or are they being steered in one direction only? Do the parents understand the sign-affirmative option . . . or is the cochlear-implant option being touted as the best possible (or the only) solution?
Another troubling fact is that when doctors tell parents not to use signing with their deaf kids (especially after they receive an implant), they may not thrive in the prescribed oral/aural regimen–but they’re excluded from deriving benefit from signing. In effect, they’re forced between languages. They’re forced to be languageless.
What, or who, influences parents into making a particular decision? Does it boil down to who has the slicker, more aggressive PR campaign: the chronically under-funded ASL lobby or the wealthy cochlear-implant industry?
DON’T PARENTS HAVE A RIGHT TO DECIDE WHAT’S BEST FOR THEIR DEAF CHILDREN?
The recent case of Lee Larsen in Grand Rapids, Michigan, was scary, but the outcome affirmed that a mother could refuse to give her deaf kids implants (even though county authorities believed that it was in the children’s best interests), and that the court could not overrule her decision and implant them against her will. Parents currently have the sole legal right to decide whether or not their child receives an implant. There are some Deaf people who feel that parents should not be the ones to make this decision. They believe that the deaf child should have the final say. In this view, receiving a CI should be a matter of informed consent by the deaf person only.
Parents have been making decisions for their children since the beginning of time. They continue to do so, of course. There have been some cases in which the courts have overruled parents in the case of life-threatening emergencies–i.e., situations in which the child’s health was endangered but the parents’ religious beliefs conflicted with the child’s medical needs, such as receiving a transfusion. (Note that we do not consider deafness a life-threatening condition or a medical emergency.) No one argues that parents have a legal right to determine what they believe is in their children’s best interests or best for their families. But we, as deaf children of hearing parents, feel that we have a right to question the bases for these decisions. After all, we are the ones who have to live with the consequences of our parents’ decisions. Their choices have profound repercussions in every aspect of our lives.
Most deaf people we know who have grown up in oral programs and become signers have a lot of anger about their upbringings. They are angry about being deprived of communication, of spending a tremendous amount of time and energy on trying to improve their speech when they could have been getting an education and interacting with others. They are angry about the time and money wasted in speech and auditory therapy. Wasted time can’t be retrieved.
MISGIVINGS
Many parents have made, and continue to make, decisions that are motivated by love and concern, but turn out to be mistaken. Making mistakes is part of being human, and part of parenting. We have begun to encounter parents who have already given their deaf children cochlear implants–and are now sorry that they did. We have a bit of advice for parents in this situation: don’t get bogged down with guilt. Invest your time and energy wisely. Establish closer connections with the Deaf community. Network with other parents. Encourage your deaf child to have other deaf friends. Read to her. Teach her how to cope with hazing. Don’t stop signing. Keep learning, keep practicing, and increase your skills.
A FINAL WORD…
You are not alone. We assure you that you can get the support you need from other parents and Deaf adults by networking. You don’t have to go through this alone. And you shouldn’t.
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http://www.cochlearwar.com/for_parents_only.html
This section is intended for parents of deaf children, especially those who are seriously considering giving their child an implant. It is written by Deaf adults who are the grown-up children of hearing parents. So we can say that we understand your concerns, and those of your deaf children. We’ve been there, and whenever we revisit our families, we’re there again.
Note that we’re using the pronouns “he” and “she” and “him” and “her” alternately. What we say applies equally to your deaf daughters and sons.
THE BEGINNING
In the old days, parents whose children were born deaf were often unaware that anything was amiss until the child was, say, 3 years old. Deaf babies are exceptionally good at fooling their parents. They cry and babble just like hearing infants do, since these instinctive behaviors don’t depend on hearing. But when they reach the stage when hearing babies are starting to put syllables together to make words, and putting words together to make sentences, deaf babies aren’t doing this, and the parents, if hitherto unaware, begin to harbor suspicions. Why isn’t their child talking? Traditionally, deaf children were “caught” when they reached this stage, and rarely beforehand.
Nowadays, with the increasing reliance on newborn hearing-screening tests performed in hospitals, deaf babies are identified before they’re taken home. In many ways, this is good. If a baby is deaf, the parents should know right away, and take immediate steps to get language to her. Delaying the acquisition of language may have profoundly damaging consequences for the deaf child, since she’s at the prime age for language-learning, and if she starts late, may never catch up in school. Instead of waiting until toddlerhood (and wasting precious time), parents get the news within hours of the baby’s birth.
There is, however, a disturbing trend to send deaf newborns straight to the cochlear-implant clinic. The 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. They’re being steered in one direction only—towards the implant. They are told that the best time to implant is infancy, when a child is just beginning to acquire language. Any postponement could lead to irreversible delays in progress, as deaf toddlers, left to their own devices, fall further and further behind their hearing peers in language development. So parents can come under terrific pressure to make a commitment now.
We know that parenting deaf children involves making some exceptionally tough decisions. Parents need to decide what sort of communicative/educational approach they will take, and to make some sort of commitment to it. This isn’t always an easy task, since advocates of the oral/aural methods and sign-language approach may be putting pressure of the parents to commit to their way.
Of course, parents want to feel like they’re making the best possible decision. And when they get pressured by opposing factions, they sometimes fight back by choosing an extreme approach. Cochlear implants represent the most extreme of approaches: a surgical invasion of a child’s head.
OUR PERSONAL FEELINGS
We don’t believe that a cochlear implant should be installed in prelingually deaf babies and young children. If a child already has experience in hearing and speech before losing her hearing, and has become profoundly deaf as a result of sickness or trauma after learning how to speak, or was born hard-of-hearing but lost her hearing gradually, we have no objection to the implant, because the child is simply reconnecting with her previous mode of communication. That child already has a basis for spoken and aural language. An implant will enable the child to build on the existing foundation.
If, however, the deaf baby or child is congenitally, profoundly deaf—that is, he has no foundation in aural/spoken language—then we don’t feel that an implant is suitable. It causes sensory confusion. Deaf children are, and should be allowed to be, visual—not auditory—learners.
I don’t believe that you can make a born-deaf child comprehend sounds any more than you can make a born-blind child appreciate colors. A child who is born profoundly, bilaterally deaf has no real concept of sound—let alone speech. It’s alien. And the CI isn’t going to magically unscramble this. It is far better to give such a child immediate access to sign language, and use that as a foundation from which to proceed. The next step is to teach the child to read and write. The speech/speechreading training can follow. Speech and aural training should not be the primary focus of a deaf child’s education.
A BLIND COMPARISON
In a way, blind children have an easier time of it than deaf children do. When a child is born blind into a sighted family, the parents, siblings, and relatives quickly accept the fact that he’s blind. They usually don’t waste much valuable time shopping around for treatments and cures. They may enroll him in a preschool program for blind children, and proceed to send him to a school for the blind. We feel that our society accepts and respects blind people and those with all manner of physical disabilities—all, that is, except deaf people. Society is willing to accommodate persons with mobility handicaps and those who are blind—but deaf people are told that we should get ourselves fixed. Fixed, that is, with cochlear implants.
SIGNS OF LOVE
One thing that parents of kids with implants always tell the media is how much they love their deaf kids, and to make an explicit connection between their love and the implant. They say things like “We wanted to give Jimmy exposure to the wonderful world of sound because we love him.” No, they insist, they don’t hate deaf people (even if they shun them), and they respect ASL (even if they refuse to learn it), but they are confident that the implant is in their child’s best interest.
The greatest gift of love you can give your deaf child is to accept him as he is, and to encourage him to thrive as a person. Embrace your child’s deafness. It is a part of him. If you take the attitude “I love you, but I hate your deafness,” or “You’re okay, but your deafness is unacceptable to us,” you’re going to end up with one very confused kid.
How do you show your deaf child you love her? Learn to sign. Learn to communicate with her. You will get to know your child better through sign language than through speech training. Because a deaf child has to be taught language, she will pick up spoken vocabulary at a much slower rate than her hearing peers are doing. But if you use sign language with her, she’ll pick that up much more quickly. Young children pick up ASL so fast that in some cases, their parents have gotten upset about it. “Yes,” they say, “he’s learning—too well!!!” Their oral skills typically lag behind their signing skills. Focus on the signing for now, and, we assure you, the speech progress will follow.
We encourage you to learn sign as soon as you can. It isn’t that difficult. And the rewards are immeasurable. We’ve encountered all the excuses not to:
“It’s too difficult.”
“I don’t want to make the commitment.”
“It’s not useful in the real world.”
“There aren’t enough people we could use it with.”
“We don’t feel comfortable doing this.”
“It doesn’t feel natural to us.”
“I don’t like it.”
We’ve seen ’em all. And we see through ’em.
MIRACLE OR MISTAKE?
The cochlear-implant industry has run a fantastically successful campaign aimed at parents of deaf babies. Give your deaf child the gift of sound, they say. Give your child a magic key to success in he mainstream. With an implant, they claim, a deaf child can acquire normal or near-normal spoken language, just like hearing children. They utilize carefully-manipulated data to show tremendous gains in language-generating and speech-processing ability.
In reality, there is no reliable way to predict how well a child will function with an implant, nor how rapid their oral/aural progress will be. The benefits accruing from the implant may be negligible. It’s an expensive gamble.
What quality of sound is the child getting? An array of manufactured electrodes can never replace the delicate and subtle sense of hearing. Some veteran CI users have disliked the way their implants fed “environmental noises” into their heads. So they switched their implants off, finding that they could better focus on work or play without them.
The CI doesn’t make a deaf person hearing. It is not a miracle fix. It does not constitute a bionic replacement for the delicate and complicated sense of hearing that has been lost or damaged. It enables the wearer to distinguish some degree of sound discrimination. After receiving an implant, a child typically needs extensive one-to-one auditory/speech therapy so that she can learn to interpret these electronic noises as human speech. There has been a wide variety of outcomes with the CI, ranging from the negligible to the excellent.
Think about expenses. Are CIs really a cost-effective measure? We have seen some extraordinary “statistics” that “prove” that it’s cheaper to give deaf children CIs and mainstream them instead of enrolling them in sign-language programs and schools for the deaf. But is it really? Implants cost $40,000 to $50,000 a pop, and we don’t think that includes the intensive speech-therapy regimen that’s required afterwards. Very few, if any, parents, we suspect, would opt for an implant if it wasn’t covered by health insurance. There is a persistent myth that a child with a CI can function just like a hearing child, but in truth, most, if not all, children with CIs need intensive, long-term, and expensive support in clinics and schools. And parents who want to learn to sign can sometimes get that free of charge. Some schools for the deaf operate early-intervention programs in which trained teachers visit the parents and child at home and play with him while teaching the family how to sign and how to read to him. Even if the parents enroll in a local community-college Basic Sign class, it’s still considerably cheaper than an implant.
Most children with implants ultimately decide to join the Deaf community. They learn sign language; they make it an important part of their lives. Some maintain clear speech, and continue to communicate orally with their families, while acquiring signing-Deaf friends. But most eventually shift to the signing community. So why delay? Why put the child through this intensive oral/aural/ speech-rehabilitation regimen when it would be more productive to give her a strong foundation in signing first?
Deaf children desperately need an enriched language environment with lots of visual-tactile-kinetic communication far more than they do intensive speech training. As we’ve already said, the speech training can wait. Language and literacy should come first.
BE WARNED!
In persuading parents to commit themselves to the implant, audiologists and CI clinicians may not present a strictly accurate picture. They may exaggerate the chances of success. They may downplay the immense investment of time and energy required in developing the child’s spoken-language skills. They may give a misleadingly rosy view of the outcome.
We have a deaf friend, “Steven,” who received a CI at the age of 35. Before he agreed to the surgery, he discussed the pros and cons with an audiologist. Steven was told that with an implant, he’d be able to use the telephone normally, to engage in telephone conversations just as hearing people do. Excited about the prospect, he consented to the surgery. After Steven received his CI and had it activated, he tried to carry on a conversation on the telephone, only to discover that he couldn’t decipher the garbled electronic sounds on the other end. After complaining to the audiologist, Steven was told that he could only engage in telephone conversations in which the other party answered “Yes” or “No.” He now considers himself a victim of deception. He had agreed to the CI only because he believed it would enable him to have normal voice conversations on the phone, only to find out that he was limited to he most rudimentary form of voice communication.
How typical is Steven? More typical than the dazzling successes that we’ve read about in the newspapers, magazines, and Internet accounts, we’re sure.
SUPPOSE THE KID ASKS FOR IT?
At least a few deaf children have told their parents that they wanted an implant for themselves. This, at least, was their conscious choice. Parents of these children, and we know of two such instances, discussed the matter thoroughly with the children first, did their homework, and investigated the pros and cons of the implant before committing themselves. In at least one case, a deaf girl who had gotten the implant lost most of her deaf friends. Deaf children with implants often endure hazing from other deaf kids: “Borg! Borg!” “Robot-ear!”
Most deaf children, when learning about what an implant is and what it does, are dismayed at the prospect of having electrodes surgically installed in their heads. But some are satisfied with the implant, and say they’re happy their parents made the decision for them. Others are unhappy about having implants and, for various reasons, stop using them when they reach college age. There is no consensus. The CI population itself is split in disagreement over the value of the implant. Some users, who had no technical problems with their implants, nonetheless decided to stop using them.
DEAF WILL ALWAYS BE DEAF
One thing that needs to be kept in mind: profound bilateral sensorineural deafness is a permanent condition. It cannot be undone with an implant. Deaf children who are born-deaf or early-deafened will always be deaf. They will be looked upon and treated as deaf by hearing people. Having an implant will not make them “just like hearing.”
How catastrophic is deafness? We recall an interview with Katharine Hepburn in which she said that Spencer Tracy’s life was tragic because his son John was born deaf. Can you believe that? But then, if you see deafness as a tragic affliction, both the parents and the children suffer. If, however, you look at deafness as another way of being human, your perspective may change radically. If you find yourself thinking despondent thoughts about the effect of deafness on your child and your family, we recommend that you connect yourself to a support system. Network with other parents of deaf children, and with Deaf adults.
In counseling parents to “accept” their deaf children, we don’t mean that they should choke down their grief and disappointment and put on a big fake smiley-face, but to learn to accept their child as a full-fledged person—smart, beautiful, capable, gifted. Each child has a unique contribution to make to the world. Your challenge is to help yours live up to his full potential. It begins with the family—the child’s first and most influential school.
BABY SIGNS: FOR DEAF BABIES, TOO
Denied access to real sign language, many deaf children have created their own signing systems, known as “home signs.” Home-sign systems have been documented and studied by linguists, and are a fascinating subject. But if deaf children weren’t denied access to ASL, there would be no need for hem to create their own systems. Home signs tend to be crude and grammatically rudimentary, lacking the richness and subtlety of real sign languages. It’s better to provide deaf children with an enriched sign-language environment than leave them to their own devices.
Signing is as natural to deaf babies as speaking is to hearing babies. Children whose parents sign to them from birth typically start signing before they can speak, because babies find it easier to sign than to articulate spoken words. Signing to babies accelerates language learning and speech. It does not retard it. The research of Acredolo and Goodwyn, among others, emphasizes the benefits of teaching hearing babies some basic signs. The advantages include fewer tantrums—babies who can communicate their needs and desires to their parents and be easily understood are happier and experience less frustration. This is something that Deaf parents have known for ages!
And if the benefits of signing to hearing babies are recognized, the same benefits apply to deaf babies. The difference is that while hearing babies can phase in speech as their spoken-language-processing skills develop, deaf babies should be encouraged to continue signing and utilize it as a primary mode of communication.
Books and multimedia packages teaching “baby signs” have been selling quite well. These books and CD-ROMs typically contain a mixture of signs adapted from ASL, and made-up signs. The number of depicted signs is usually limited. We recommend that parents of deaf babies use real ASL signs with them (and their hearing siblings). This will make it easier to phase in additional signs and encourage them to put sentences together. There won’t be any necessity of unlearning made-up signs. Parents can, of course, use made-up signs if they find them easier. If you develop a non-canonical sign that you feel more comfortable with, by all means, use it. Lots of Deaf people use impromptu, invented, and “play” signs. The important thing is to get language to the baby immediately and frequently.
A CUP OF JUICE OR A TANTRUM?
We’re sure that you recall reading about Heather Whitestone McCallum, whose mother, Daphne Gray, took a rigorously oral approach with her, enrolling her in an intensive oral/aural program and later, Central Institute for the Deaf, one of the most strictly-oral schools in the nation. (She learned to sign fairly fluently when she was in college. Incidentally, she now has a CI.) When she was young, Heather attended a “mixed” class for deaf children where she saw other deaf kids signing, and picked it up from them. Daphne did not approve of this, and used a form of “behavior modification” to discourage her. She wanted Heather to use her voice, not to sign.
In a children’s biography, and in her own memoir, Daphne is described as refusing to give Heather a glass of juice until Heather, who was signing something like “Juice, please,” articulated her request in voice. Daphne deliberately ignored Heather’s signing. Only when she uttered a vocal sound did she get the water. Oralists would consider this an effective way of compelling children to develop speech skills. Deaf people consider it cruel.
Toddlers are notorious for throwing tantrums. Many of these are caused by communicative frustration. The child isn’t deliberately acting bratty; she is trying to communicate her needs or wants and isn’t getting through. When little Kim is thirsty and wants a drink of juice, and tries to articulate her want to Mommy, but Mommy doesn’t understand her whining and frantic gestures, Kim is apt to get upset, and a tantrum ensues—wailing, crying, stomping, fist-beating. But if Mommy has already taught Kim the signs for “thirsty,” “drink,” or “juice,” Kim can sign to her, and Mommy understands immediately, opens the refrigerator, and pours Kim a cup of her favorite juice. Her immediate want satisfied, Kim can proceed with play and learning. She’s happy that Mommy understands, and Mommy is happy that Kim is able to communicate easily. Mommy can make a learning experience out of it, building on the signs Kim already knows to introduce new ones—“thank you,” “good,” “cool,” “oranges and lemons.”
Sign language is not a communicative crutch. It doesn’t make deaf children lazy. It doesn’t interfere with their ability to produce clear speech. It doesn’t retard their language development. It benefits them. It benefits them tremendously. Once you make space in your life for signing, you will see that it benefits you too.
WHAT WILL YOURS SAY?
Imagine your deaf child as a young adult, almost fully grown, going off to college. After deaf children graduate from high school (whether mainstreamed in a public school, attending a school for the deaf, or in a day or charter-school program) and go off to college, a number of them choose a signing environment like Gallaudet University, NTID, or CSUN. Then, when they come back to visit their families during semester break, what do you suppose they’re going to say? Their #1 wish seems to be, “Mom and Dad, I really wish you’d learn to sign so that we can have good conversations with each other.” Or they’ll say, “I wish you hadn’t listened to those doctors when I was a baby. I wish you’d learned to sign. I would have been much happier.” We have met many, many deaf adults who expressed disappointment that their parents hadn’t learned to sign. Anger and grief are common feelings in these people.
When deaf adults get together, they often discuss their families. What will your deaf child say about you? Consider the possibilities:
“The audiologists told me parents not to use sign with me, but they defied him and taught me to sign anyway—and I’m so grateful they did!”
“My folks wanted me to speak and hear just like a hearing person, and they wasted so much time pursuing that fantasy.”
“My parents decided to learn to sign when I was a baby, and I love them for doing that.”
“My folks refused to let me use sign language in our house. The doctors told them that if they let me sign, I’d never learn to speak properly.”
“My folks decided to enroll me in a sign-language program when I was a toddler, and my signing skills just took off like a rocket!”
“I was mainstreamed, and I had a terrible time of it, without deaf friends or support services. My folks never quite understood what I was going through.”
“My parents got me a cochlear implant when I was a baby, and it took years for me to acquire intelligible speech.”
“My parents were confident that I’d do just fine without an implant. They had faith in me.”
“Mine refused to believe that I was deaf, and kept taking me to different doctors to be tested. They wouldn’t learn to sign. I fell behind in school and never quite got caught up.”
WHO MAKES THE DECISION?
One big question, of course, is: who has the final say in deciding to give a deaf child a cochlear implant? Who makes the decision on behalf of the deaf child? The parents, of course. And who influences this decision?
Professionals in the medical field (audiologists, clinicians, doctors, surgeons, etc.) have shown that they have very little, if any, interest in what the Deaf community thinks or believes. For years, doctors have routinely advised parents not to use any signing with their children, despite the well-publicized benefits of a signing environment, and we don’t see much abatement of this trend. The implant doctors, as far as we can tell, shrug off criticism from Deaf advocates as the rantings of retrogressive loonies and fringe fanatics.
We also question the basis for the decisions being made by the parents who have no previous education on the issues. Who is handling the task of discussing the communicative choices with the parents? A doctor who has a negative opinion of signing? One who links signing with low expectations? One who has an interest in promoting implants? Just who is presenting the options to the parents? Are the various possibilities (and each has its advantages and disadvantages) being presented to them in a fair, unbiased way, or are they being steered in one direction only? Do the parents understand the sign-affirmative option . . . or is the cochlear-implant option being touted as the best possible (or the only) solution?
Another troubling fact is that when doctors tell parents not to use signing with their deaf kids (especially after they receive an implant), they may not thrive in the prescribed oral/aural regimen–but they’re excluded from deriving benefit from signing. In effect, they’re forced between languages. They’re forced to be languageless.
What, or who, influences parents into making a particular decision? Does it boil down to who has the slicker, more aggressive PR campaign: the chronically under-funded ASL lobby or the wealthy cochlear-implant industry?
DON’T PARENTS HAVE A RIGHT TO DECIDE WHAT’S BEST FOR THEIR DEAF CHILDREN?
The recent case of Lee Larsen in Grand Rapids, Michigan, was scary, but the outcome affirmed that a mother could refuse to give her deaf kids implants (even though county authorities believed that it was in the children’s best interests), and that the court could not overrule her decision and implant them against her will. Parents currently have the sole legal right to decide whether or not their child receives an implant. There are some Deaf people who feel that parents should not be the ones to make this decision. They believe that the deaf child should have the final say. In this view, receiving a CI should be a matter of informed consent by the deaf person only.
Parents have been making decisions for their children since the beginning of time. They continue to do so, of course. There have been some cases in which the courts have overruled parents in the case of life-threatening emergencies–i.e., situations in which the child’s health was endangered but the parents’ religious beliefs conflicted with the child’s medical needs, such as receiving a transfusion. (Note that we do not consider deafness a life-threatening condition or a medical emergency.) No one argues that parents have a legal right to determine what they believe is in their children’s best interests or best for their families. But we, as deaf children of hearing parents, feel that we have a right to question the bases for these decisions. After all, we are the ones who have to live with the consequences of our parents’ decisions. Their choices have profound repercussions in every aspect of our lives.
Most deaf people we know who have grown up in oral programs and become signers have a lot of anger about their upbringings. They are angry about being deprived of communication, of spending a tremendous amount of time and energy on trying to improve their speech when they could have been getting an education and interacting with others. They are angry about the time and money wasted in speech and auditory therapy. Wasted time can’t be retrieved.
MISGIVINGS
Many parents have made, and continue to make, decisions that are motivated by love and concern, but turn out to be mistaken. Making mistakes is part of being human, and part of parenting. We have begun to encounter parents who have already given their deaf children cochlear implants–and are now sorry that they did. We have a bit of advice for parents in this situation: don’t get bogged down with guilt. Invest your time and energy wisely. Establish closer connections with the Deaf community. Network with other parents. Encourage your deaf child to have other deaf friends. Read to her. Teach her how to cope with hazing. Don’t stop signing. Keep learning, keep practicing, and increase your skills.
A FINAL WORD…
You are not alone. We assure you that you can get the support you need from other parents and Deaf adults by networking. You don’t have to go through this alone. And you shouldn’t.
Introduction | History | Forum | Newsflash
For Parents Only | Myths & Facts | Deaf can do
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