Life’s Lessons
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Life’s Lessons
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I don’t think I have ever been quite so complimented as I was to receive the invitation to be here... with you... on this occasion. I knew this conference was on the calendar. I’d seen announcements of the meeting and a roster of the speakers. I’d even spent a few wistful, wishful moments thinking what fun it would be to go to such a meeting, to be in the company of so many superstars. And then the call came and an almost tentative question... would I come to Easton, would I speak at this Banquet? First, of course, was the thrill! I could be here! I could be in this company! Then came the obvious question. What in the world could I possibly say to you? What do I know that you haven’t taught me? What does the world of deaf education know that has not been taught most and best by those assembled here this weekend? And then I knew that was exactly what I would tell you. I’d tell you what you and your colleagues and your teachers have taught me. I’d tell you what I’ve learned as mother of a son whose hearing is impaired. There are really only two things which qualify me to speak to you. That I am mother of such a son is first... and is paramount. Some professionals are also parents of children with impaired hearing, but I am always careful to make clear that I am not a professional. My lessons have been learned as mother of a son named Sam, who has a profound hearing loss, and who grew up in Mobile, Alabama, far from such opportunities as can be found here at the Beebe Center. I am mother, also, of a son with learning disabilities, and a son who had a progressive, degenerative disease who, this month, will have been gone fifteen years, which is as long as he lived. Those children taught me much, but nowhere have the lessons been as clear as in deaf ed. A hundred years ago when I was young, I studied child development, psychology and education. That is not one of my qualifications; that only helped me put the lessons in perspective. In recent years I have become increasingly involved in civic issues in Mobile. With other volunteers, I’ve studied school drop outs and child abuse and parent education and day care and how we deliver welfare services. That’s not one of my qualifications; that really just reflects the uses to which I’ve put the lessons learned from having a deaf son. The second qualification then is not my college major and it’s not my civic participation. It is that I am editor of OK Magazine. Editing OK for the Parent Section of the Bell Association for ten years, I’ve taught a little bit and learned a lot. Being mother equipped me to do that, though, and not the other way around. Tonight, then, I want to tell you what I’ve learned as mom. I want to thank you for life’s lessons learned in this arena that we share. Life’s lessons. Not deaf education lessons. You see, I often find myself thinking how pervasive and persuasive have been the lessons I have learned in this arena. I find myself wanting to explain the way the Bell Association works to people who have no interest at all in hearing loss. I’m saying Bell Association and this is a conference of AVI.. but the relationship between the two is intimate, and AVI’s best teachers teach also for the Bell Association. I find myself explaining the way Bell Association works. That’s the thing, you see. It works. Let’s let that be Lesson Number One. The Bell Association last year celebrated its centennial, a hundred years of teaching deaf children to talk. How do I know that? I’ve met the children. I have heard them talk. I started to say I could speak only for the last 28 years... the years since I’ve been Mom to Sam, but I really can speak for more than that. I’ve a tape of Helen Keller speaking. I’ve seen pictures of Bell teaching her to speak. And I’ve met Little Jimmy. When Sam was just a baby and the diagnosis was still new, my great aunt told me many times of Little Jimmy. Her friend from girlhood in Kentucky had a son who had grown up to be an architect, though he was deaf. When we began to go to Bell Conventions we met many of the early ODAS leaders. It was years later that I realized that one of them, an architect old enough to be my father, was the Little Jimmy about whom my great aunt so often spoke. Jimmy Frankel died some years ago... but I knew him, and so I knew of my own knowledge deaf children who learned to talk before I was born. This first lesson is about what we know of our own knowledge. I know of my own knowledge that deaf children can learn to speak, and that’s been critical. There are, you see, vast armies of people who have told me, from the beginning and as recently as last week, that they cannot. When Sam was in preschool, I was much influenced by a teacher who came to us from a Midwestern state school where she taught middle school science. She tried to teach our preschoolers orally, but it was slow, and her frustration mounted. She begged to introduce signs, and said she’d discontinue them if they did not seem to help. Total Communication claimed to be new then, dissociating itself from earlier combined methods, and her passions were inflamed by what she read of TC promises. The promise was that if children were given signs as well as speech, they’d learn language in sign, and then talk when they had something to say. TC made sense. It seemed logical to me. My husband, on the other hand, had by then begun to go to board meetings of the parent section of the Bell Association. At his first meeting, he met John, a ten-year-old, profoundly deaf, who held his own in conversation. Then Bert knew, of his own knowledge, that children taught to lip read and to speak could do both those. I didn’t know it yet. A man came to Sam’s school to demonstrate an auditory training unit called the HEAR Training Unit 1A, of which we’d read a little bit in Ciwa Griffiths’ book about the HEAR Foundation. Hers was the first we read of auditory education for deaf children... teaching them to listen rather than to lip read. Our preschool teacher scoffed. Why, she asked, would anyone ask a child with everything intact but ears to depend on ears alone to learn? Her logic still seemed right. But underneath the logic... hers and all the rest of the detractors of the Bell Association... was the conviction that deaf children couldn’t really learn except in sign. They must have sign, the argument went, or they would be frustrated, they’d be estranged from their families, they’d never learn language and without language, they’d never learn anything else. I was afraid she might be right. In those days, we traveled to Johns Hopkins in Baltimore for audiology, and we leaned heavily on the Drs. Hardy for advice of other kinds. I called Dr. Miriam Hardy one day to say Bert would be in Washington and to ask if there was anything she might pass on to him while he was in the neighborhood. And she said yes. The ink on Doreen Pollack’s book was almost dry and he should get a copy. The ink didn’t dry before Bert had to return home, so he left an order, but before our copy came, we attended a state meeting in Montgomery. Since we got lost every time we went to any such meeting, we were late. I slipped in the back and sat beside a little girl with bouncy black curls bent over a coloring book. I asked her name and recognized it as the daughter I had never met of Huntsville parents who had worked with us on state initiatives. At break time, I engaged this five-year-old in conversation. She was five years old! "She isn’t very deaf, is she?" I asked her mom, who told me her loss was profound. "I didn’t understand the instructions from the Tracy Clinic," she said, "and instead of holding objects by my mouth so she would lip-read, I held them over my mouth. She couldn’t see my lips and learned to recognize the object’s names by listening." I would never have believed Doreen Pollack’s book if I had not engaged that five-year-old in conversation, but when the book said Doreen Pollack could teach children with profound hearing losses to hear and so to speak, I did believe her. I know of my own knowledge that a little girl in Huntsville, Alabama, could do that. Soon after that we went to our first Bell Convention, in Chicago. I took Doreen Pollack’s short course. I saw audiograms of profoundly deaf children and films of those same children speaking, reading, learning to listen, learning by listening. As impressive as the short course was, the thing that mattered most for us at our first convention was that we had taken Sam and our younger, hearing son, Phillip. We took our boys, then five and seven, to all the children’s activities, and so we met other hearing-impaired children. We devised a plan that worked for us then, and ever after. We’d pick out a child who was doing what we hoped Sam would one day do, and we’d follow that child to his mother. "How did you do it?" we would ask. The "best" mom of the "best" child at that first convention answered, "We were lucky. We live in Denver. Doreen Pollack is his teacher." We knew, from that time on, of our own knowledge, that deaf children who were taught to listen had the most natural speech. The most natural syntax. The most information. The best school experiences. The most natural relationships with their families. The easiest rapport with other children. We knew it because we continued to go to Bell meetings and conventions and we met a slew of deaf kids. The findings were consistent and compelling. The children doing best were learning to listen. Some children doing well learned to read lips. Both groups learned to speak. Neither group was taught to sign. And let me emphasize, they were not learning just to speak. They were learning all the things we wanted Sam to learn... syntax, information, how to get along in the family, the neighborhood, the world. We never met a child who could do what we wanted Sam to do who’d learned to do it by learning sign. We never met a child who did what we wished Sam could do who’d learned it in Total Communication. First Lesson then: The Bell Association works. It is comprised of three sections: parents, professionals, and oral deaf adults. The opportunity for parents to learn from other parents, from accomplished professionals, and from the oral deaf adults (and oral children) is unparalleled in my experience. The Bell philosophy that deaf children can learn to speak... and how... is demonstrated again and again by members of each of the three sections. Second Lesson: For parents, demonstration is as good as proof. Case studies are perfectly valid... for parents. Bert came home from that first meeting and said, "If John can do it, Sam can do it." Later I met children who were doing what we wanted Sam to do; I met their parents and their teachers. We knew it could be done. We did not know if there were scientific studies or statistical proof that most children could or could not, did or did not do it. We did not know if most teachers could teach it. That really did not matter to us. What mattered was our conviction that some parents and some teachers had been successful in teaching, and some children had been successful in learning what we wanted Sam to know. What mattered was our determination that we would learn what those parents had learned, we would find teachers who had had those kinds of successes, and we would give Sam every opportunity to accomplish what those children had accomplished. Third Lesson: If you want to know how to do something, ask someone who has done it how they did it. Do that. Don’t take instruction from those who tell you it cannot be done; what they are, in fact, saying, is that they can’t do it! I was surprised when Sam was young that so many people told us he could not learn what we wanted him to know and could not do what we wanted him to do and thought that negativism could persuade us we should teach him something else. Those folks never demonstrated... then or since... that what they advocated instead had ever worked for them or anybody else. We were back to the logic of TC on that, but by then we knew that empirical evidence contradicted that logic. What surprised me then does not surprise me any more. Remember... I said these are "life" lessons. If any of you have been involved in the civic issues I mentioned earlier, you will recognize how this lesson has been perverted. I’m torn between wanting to give you some examples of how I’ve used the lessons in other arenas... and not wanting to stray from deaf education. Let me give an example... this one drawn from a study of drop-out prevention. In Mobile one summer, middle school children were offered remedial classes where, in six weeks time, poor readers would catch up... but to be eligible, they had to have failed English and math two years. I was appalled when I heard this plan! Children had to fail two fundamental subjects for two years before they became eligible to get instruction that would work in just six weeks. That’s lunacy! (But that was strangely reminiscent of what I had observed in some approaches to deaf ed.) If our school system knew how to teach reading in six summer weeks, why in God’s name did they not do it for the eighteen school-term months in the two years preceding? Why did they insist the children fail for two years before they offered them what they knew could work in just six weeks? I know why and you do, too. Because we sometimes keep on doing the old tried and failed. We say it can’t be done if we can’t seem to do it. And we don’t use as models those who’ve done it. Except in the Bell Association. We do use models who’ve succeeded. Do any of you remember when years ago Nanette Fabray lost her hearing? She became a spokesperson for manual communication and was widely quoted when she said, "Parents point to the few Bell successes and hold them up as models for their children." I wondered than and wonder now why she suggested parents should choose and use as models something other than success. Lesson number three: Learn from people who’ve succeeded in doing what you want to do. Don’t buy into the old tried and failed. Use success as your model and don’t apologize! I’ve gotten myself into a little trouble with this lesson. Last year a mother was incensed by an article in OK. A younger mother recommended something that had worked for her but that was not available where the mad mama lived. "Why do you always write of such as that?" this mom demanded. "We will not ever have those services." Her question troubled me for a long time, for she was right. In OK Magazine we write of ways that work and teachers who know how to teach even though those are not always extant in the boonies. At this conference, you have heard the best of the best telling you what they do and how they do it. Many of our Our Kids will never attend such programs as you’ve heard described, never have such teachers as are in this room. Why do we so relentlessly tell of them? The answer, when it came, was obvious. If we did not tell you, I asked the mad mom, how would you know it? If the Bell Association, in it’s publications and at its meetings and conventions, did not tell it again and again and again, parents and children and sometimes even professionals would not hear it at all. If AVI did not come here and go elsewhere all over this globe to demonstrate that deaf children in fact can learn to listen, and when they listen, can learn everything else, no one would demonstrate it. Certainly, that’s how we learned it. No one in Mobile would have told us such a thing. But Margie Stibick was in Fort Wayne, Indiana, when Sam was diagnosed. Bert’s parents lived in Fort Wayne and know the Hutners, whose son Margie tutored in those years. Margie wrote to us, called us on the phone, sent us materials, told us where to go for audiology and guidance. In time, Margie sent me brochures from the Beebe Center and the Larry Jarrett House, among others. She introduced us to Ann McGuinness and a lot of other folks. She told us where your meeting were and who was speaking, what you were teaching even then. We read Dan’s books, and traveled to hear the Ling Thing from the Ling Lips. We were at IPO meetings with Judy Simser, when her son and ours were still just little boys. Soon after Bert died, what was then called ICAVC met in Biloxi, hosted by the Stanfields. I went and afterwards some of you came home with me to encourage other Mobile families. It was wonderful having such as you in my home. I have unlikely memories of Helen Beebe in my kitchen, helping fix pastry trays; of Judy Simser sunning on my patio... and trying to revive the potted mums I’d bought for the picnic supper I’d planned for them to meet parents and teachers in Mobile. That was the first time I publicized you as the Superstars of Deaf Education and some of you reacted modestly to that... but who could argue with the designation? All this is part of my own experience. I met Marjorie Martin at a Bell Convention, and was enchanted with her Beebe films at the Exhibits. We became friends. Later, at the recommendation of Emelda Luttman, I asked Marjorie’s help with something I had written and our friendship grew. I wrote a piece with Margie Stibick for a journal Judy Marlowe edited; Judy became real to me. I roomed once, at a meeting, with Maxine Turnbull, and got to know her. I went to see Ellen Rhoades when I was in Atlanta for a day. Lots of you have let me have your things for OK Magazine. I’d begged for sibling articles; Dale Atkins furnished them. Warren Estabrooks endears himself to me by sharing his experiences... and enthusiasm... and optimism! Dr. Chuck Berlin in New Orleans and Dr. Dennis Pappas in Birmingham are near enough my home that more than what I read, I hear about them from folks they see professionally. Dan Ling himself responded to a letter to OK from a father in India. That father wrote, "I can’t believe the answer came from such a famous man." All these are famous people. And sometimes, like the dad in India, I can’t believe I think of them as friends. That’s the point of this part of my tale. I live in Mobile, Alabama, where there was no education for deaf children when Sam was a baby, (and no PL 94-142 to guarantee there ever would be) but I did and do have access to the best of the best. Because I do, when people said, in Mobile, Alabama, that "deaf children can’t...", I knew my models would not come from home. Because we all have access to what these Superstars have done, the mad mom knows the distance between what her child gets and what would teach him more. Her frustration and her anger are products of her knowing what you do... and knowing teachers where she lives don’t know it. That’s why we tell it so relentlessly... so she will know it. So she can make decisions, as we did, based on knowledge of what really works. Fourth Lesson: Parents have to know. Parents have to be involved. At another session of that first Bell convention we attended, a speaker, whom I no longer can identify, said that every single deaf adult who had succeeded, had a special kind of mother. That speaker scared the devil out of me! I would not say to you it has to be a mother... it well may be a father... but I'm afraid the speaker had it right; parents have to do it, or at the very least, have to cooperate with teachers who are doing it. I think, also, of a film I saw about LD called "Gifts of Greatness," which showed many well-known personalities, personalities like Hans Christian Anderson, Winston Churchill, Albert Einstein, who had achieved singular success despite their having learning disabilities. The message of the film was purportedly that LD children can achieve; the more subtle but more important message was that in every instance those remarkable achievers had mothers who did for their children what their schools did not. In every case but one.. one child depended on an uncle. At any rate, the schools they went to didn't work for them. It took a parent or a parent substitute. That piece Margie Stibick and I wrote for Judy Marlowe included these lines: "On the team, parents are the most critical group, but they are the only group who come to the problem with no training, no experience, and usually no expectation of ever dealing with hearing loss. All the others will have chosen to become involved in the issues of hearing loss, and they will have had years of advanced study of its many ramifications. They will have had experience with hearing-impaired children and hearing-impaired adults; they will have had various degrees of success and failure; they may have had the opportunity to observe, to test, and to try many methods; they will come to the task with some degree of professional objectivity." "Most parents will not have had any preparation at all. They may have chosen to become parents; but they will never have chosen to be parents of hearing-impaired children. They have not had the study, primary or advanced; they have not had the experience; they do not know about the methods; and they bring no objectivity to the job. Even so, parents are the most critical members of the team who will manage the childhood of the child who does not hear..." Parents are the most critical members of the team. In the years since Sam was a baby, we’ve learned lots of new things about parent education, parent support groups, and probably most important, early intervention. I really don’t want to bore you with the other things I do, but what you’ve taught me about early intervention and parent education have given me a perspective lots of people in Mobile are only now learning. The best hope, one group in Mobile believes, to turn around the social nightmares of our age is found in early intervention and parent education. The folks I work with think I’m a quick study. In fact, it’s one of the life lessons I have learned with you. We know that early intervention... early audiology, early fitting of hearing aids, and early auditory training are the sine qua non of our children doing what we most want them to do! My mother used to say, "Children don’t drop down from heaven learned; you have to teach them." Well, parents don’t become learned giving birth... they also need education and support. They have to learn what works, so they will make wise choices. But just knowing what works is not enough. We have to be willing to do it. Our doing what works for our children requires a willingness to wait for the payoff. The old Freudian saw about delayed gratification for greater gratification in the long run is nowhere better demonstrated than here. Children sometimes have to listen for a long long time before they understand what they hear. Children often need years of speech therapy before they can articulate. Mainstream education will not work for many of Our Kids until they’ve had a lot of special education. We work sometimes for decades to achieve goals that may seem to be mirages, always somewhere in the distance, beckoning and fading, then beckoning again. Yes, there are frustrations. I have no quarrel with advocates of sign who said Sam would experience frustration. I do not think, though, asking him to learn to understand speech and to speak caused his frustrations. I think the hearing loss itself is cause enough and we set out to deal with that three ways. One was to find ways to alleviate a little guy’s frustrations... pictures and charts and body language and picking up on his body language... and teaching him as patiently as we could to listen, lip-read, try to speak. Just as important was our attempt to help him tolerate and deal with his frustrations. And lastly, most important, was our hope that he would learn enough language and speech to have far less frustration in adulthood. We made a conscious decision to put up with childhood frustrations in the hope there would be less frustration for the rest of his life. It’s not easy. It’s not quick. And it’s not cheap. But it is possible! And it is worth the work, worth the wait, and worth whatever it costs! The payoff may come later, but delayed gratification can be greater in the longrun! That’s Lesson Number Five. Lesson Number Six: What seems to us to be greater gratification is not greater gratification to some other people. There really are folks out there who do not want Our Kids to talk. There are people who believe, at some philosophical level, that deaf children should be raised and educated to be deaf adults, to speak what they call the "mother tongue" of "the deaf", to live in a deaf society, to be defined and limited by deafness. I used to believe they were the same people who believed nothing else was possible... who believed deaf children really can not learn enough speech and language to do otherwise, but I have come to realize there are people who think even if they can, they shouldn’t. I can’t begin to understand this point of view, but I have to acknowledge it exists. I came face to face with it just a few years ago at a meeting in Mobile where a speaker I had heard two decades earlier had completely changed his tune. He had been one of those I’d heard speak before in favor of TC, who had said when Sam was small that TC would, in the long run, enable him to speak better than if he had been taught only to lip-read or to listen. Two decades later, the former TC guru had become an advocate of sign... not sign combined with listening, lip-reading, and speech... but sign alone. It’s all deaf children need, he said, it’s all they should be taught. When asked to name four things deaf children need, he said, "ASL, ASL, ASL, and ASL." When asked to name four things they need, I said, "They need to hear, they need to learn language, many need special education to prepare them for education in the mainstream, and some need special job preparation and job opportunities." Then I elaborated on each of those. He said all they need is ASL. He’s not alone. There are also good-faith efforts that reflect his point of view. Twice in the last few months, I have met ten-year-olds who’ve been taught that what he says is true. Two little girls, one in my neighborhood and one in Mississippi, told me they learned sign in the "enrichment" programs offered gifted children. Both of these little girls are fascinated now with deafness; one knows she wants someday to teach deaf children. These little girls think all it takes is ASL. I guess it’s not realistic to expect more from little girls than from adults. Last year I went to a national convention of a group that really tries to be accessible to everyone with special needs. They had a sign language interpreter at every plenary. I asked one interpreter for whom she signed and she said for anyone who needed it, which meant, of course, for no one. If any there had needed signs, they would have sat right in front of the interpreter and she would have known they were watching her. There were thousands at these meetings... surely some wore hearing aids. There were no loops, no FM systems, no real-time captioning... just someone signing to give the appearance of accessibility. I’ve run across a similar mistake sometimes in teachers of deaf children. Once when I spoke, a teacher from the Mississippi coast, a nun, sought me out afterwards. "Why do you mention oral interpreters?" she asked. If your children can do all you say, why do they need interpreters?" I reminded her that even when the speakers signed at some of what she had just heard, there were three other sign interpreters around the room. "Even good lip-readers," I told her, "have to be close enough to see the lips they’re reading." She reminded me of all the times we hear school people say, "If what you want is mainstreaming, we’ll let them sit in mainstream classes," and we have to explain, "We don’t want them to sit in mainstream classes until they can learn there!" What we want is preparation for success in the mainstream. When I encountered each of those gifted little girls who are so proud of knowing sign, I wished their teachers had asked you or me what to teach them about helping children who don’t hear. I might have told them about patience, acceptance of differences, getting close enough for their deaf friends to hear with aids or to lip-read if necessary, rephrasing if repeating doesn’t work, telling them what someone else said that they missed, sharing notes, repeating announcements made on a PA system, willingness to phone by relay system, and the rest. These last few anecdotes reflect people who would help in the mainstream if they knew how, but remember, there are also people who want "deaf world", not mainstream. I have a copy of a Gallaudet student newspaper from a few years ago in which students responded to being asked how they felt about cochlear implants which were described as: "The cure of deafness... (a) great medical-technological break-through with which almost all deaf people would finally hear." One student responded, "I am opposed to this technology. The heart of the deaf society will soon disappear... so will Gallaudet College. Sign Language is a beautiful art, and I want to keep that tradition, and, it is also against God’s will." The editor of the Gallaudet paper covered this student’s statement with an editorial, which spoke of "condemning this breakthrough as being destructive to the continuance of deafness." The student is opposed to "this technology." The editor speaks of a "breakthrough." It’s hard for me to understand how people condemn improved technology and medical breakthroughs, but it is evidence of their wanting to continue the old tried and failed no matter what. So many parents and professionals have worked so hard to bring about the new technology, new techniques, and new opportunities, but those who want their old ways to prevail don’t even acknowledge it’s been done. Parents still are told their children must learn sign, and often no one tells them hearing aids were not available when that philosophy was written, and hearing aids were not so powerful even a few years ago as they are today. Improved aids, FM systems, captioned TV, computers, implants, fax machines and relay systems, and a host of other things enable Our Kids to do things we never dreamed of when Sam was a little boy, but there really are still folks who don’t want Our Kids to do them. Ladies and gentlemen, I admit to being foursquare on the side of those who would "destroy the continuance of deafness!" For all the years of raising and educating a deaf child, I kept an open mind. I thought perhaps I had to listen to those teachers and those deaf adults who said I asked too much of my deaf son when I asked him to speak, who said his rightful place was in a deaf society, his mother tongue was really mother hand... that he should sign and needn’t speak. I agonized over whether there might be some truth in their insistence he could not compete with people who can hear, that my preferring to include Sam in my world would mean condemning him, if not to failure, at least to being always second best, or third, or even last. But I have seen it to the end, and I’ve learned all these lessons. Our early observations that the children who were learning to listen or to lip-read and to speak had the most natural speech, the most natural syntax, the most information, the best school experiences, the most natural relationships with their families and the easiest rapport with other children have been verified through all these years. The TC guru who had changed his tune said years ago that given signs, our children would learn language rapidly, would learn academic subjects more easily, and would speak better because they had so much to say. Our child’s TC teacher spoke often about emotional risks for children who learned slowly, as our oral/aural children did. Other critics have accused us of such emphasis on speech that our children don’t learn anything else. What I’ve observed is quite the opposite. I think of just one little boy who started school with Sam, then went to our state school for fifteen years, where he learned sign but nothing else! His mother calls me now and then for solace or advice. He came home knowing sign but no one in his family signs. He cannot read or write well enough to communicate like that. He did not learn a trade and cannot get a job. All he learned in fifteen years, from ages six to 21, was how to sign! In that same stretch of time I saw more and more of our deaf children grow up to do all the things we dreamed of. One of them was mine! He never achieved the kind of auditory-verbal competence he might have, had we lived in Denver or Easton or Montreal, but I’ll tell you what he did achieve. Sam went through high school and college in the mainstream, unsupported except for his mom as tutor and a private speech pathologist. He worked and lived alone in Atlanta for two years. He came back to Mobile, married his high school sweetheart, and went to work for a man who’d taught him commercial photography in college. It didn’t take long for Sam to realize no one in Mobile was processing black and white film. He saw that as an opportunity and established a black-and-white lab of his own. Just recently, his lab, the photographer’s studio, and a third man’s advertising business have formed an umbrella corporation for which they are building a new building; his career is exciting and demanding... and apparently succeeding beyond early projections. He and Claris bought an old house last fall, which they are doing over themselves. Their friends from high school and neighborhood are, in many cases, still good friends; his college fraternity brothers still are brothers; they have a busy, satisfying social life. Sam has become active in some business and professional organizations, and he’s been asked to be on a few boards or committees that serve handicapped Alabamians. He and Claris celebrated their second anniversary in April and they expect a baby in December! What we wanted more than anything else for Sam was that he could grow up to be independent. He is fiercely independent, even when he might benefit a great deal by using oral interpreters or advocates. He manages without interpreters and is his own advocate. We wanted him to know enough about options and decision-making to make good judgments for himself. He does that, too. Now let me tell you what we never did accomplish. We never made it all the way to perfect. Sam’s speech is perfectly functional, but it’s a long way from perfectly perfect. His syntax still reflects his hearing loss. He made it through high school and college in the mainstream, without support... but because he had no support, he probably missed as much as he got. Sam went just one year to his first choice of schools because he said he worked too hard for his grades to be so poor. He transferred to Spring Hill college, a very fine Jesuit school quite near our home, and even there, had a professor who asked him, "Don’t you know there is a school in Washington, D.C., for people like you?" Sam hung in. At one point, when his success looked less than sure, Sam said if he couldn’t graduate, he thought he’d audit for four years. He knew he was learning more than he could give back on exams and the education was more important to him than even the degree. He pulled it out and graduated with a B+ average, but it was a struggle all the way. We never did slough off the imperfections. Come to think of it, none of those other Bell successes... those we used as models... were quite perfect either. Which brings me to the last of the great lessons I will dwell on. Lesson Number Seven: Our children do not have to make it all the way to perfect. They have the same right all the rest of us imperfect people have to live and love and work and play in this imperfect world. When Sam was about twelve, he said, "Mom, don’t worry about the future. In the future my speech will be perfect." I think what he expressed was his realization that he could continue to improve. He’s still improving. I ask him all the time where he has picked up language I’ve not heard him use before. Even so, he had to come to terms with knowing he would make it all the way through school and growing up and in the end... he still would have a more profound hearing loss than the best aids and auditory training in the world could overcome. He would still have imperfect speech. He would still have a language gap, still miss much of what goes on in the classrooms and public meetings. And when he went to work, he would compete with other college graduates who might be just as eager, just as cute, just as willing to work hard as he... but who hear a lot of things he never has and perhaps never will... and who can use the telephone. But that’s OK. Lesson number seven. That’s OK. Accept our children? Accept their deafness? It is we who do it best. We teach them to do the best they can, and we accept their efforts as OK. We don’t relegate them to some other realm because they sound funny, or miss a lot, or need a friend or a Relay to make their phone calls. We strive for normalization, but we don’t turn away from something off the norm. And we don’t turn them away from our mainstream, our world. My eldest child had triple-E width feet. When he was in three-year-old nursery school, because all the other children wore them, he desperately wanted sandals... which he called "bucklers", but "bucklers" didn’t come in triple E. That was the first time I remember saying to my children, "God doesn’t make everybody alike." God doesn’t make everybody alike so schools can’t teach everybody alike. Schools can’t teach everybody alike, but schools have to teach everybody. Shoemakers don’t have to make sandals in every size, but schools really do have to teach everybody. I can’t think of a more crucial or complex issue in our time. Our schools have to teach everybody, and they really don’t know how. They might take a leaf from the book of the great teachers in this room (and their colleagues.) Let’s look again at what they’ve taught us. They’ve taught us that even children with profound hearing losses can learn to listen, and when they listen they can learn everything else. They’ve taught us to watch closely what parents and professionals do that enables children to learn what we want them to learn. They’ve taught us demonstration is as good as proof; if we have seen it done, we know of our own knowledge that it can be done. They’ve taught us parents have to be involved. The best results come always from coalitions between parents and professionals. They’ve taught us to be patient. We sometimes have to wait to get results, but good stuff is worth waiting for. They’ve taught us not to be seduced by what some others want; to set our goals, to persevere, to stay the course. They’ve taught us it’s OK to be imperfect. It’s OK, too, to keep on trying to slough off the imperfections. Our Kids don’t have to be forever deaf if technique and technology can enable them to hear. They don’t have to always have poor speech if speech therapy can help. It’s OK to keep on getting better! (That’s really the best part! Sam keeps getting better!) What worked for our babies often works for us, and works for them as they grow older. I’m not sure these lessons wouldn’t work for everyone. When I apply them to the other things I do, I think of you, with love and gratitude. That’s what I made this trip to say. The Superstars of Bell and AVI empowered us to teach our son what we hoped he could learn. We learned a little in the process. For all of that, I most sincerely thank you.
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