Reflections on raising a child with a disability
Edited by Donald J. Meyer, Director
Sibling Support Project
$14.95/paperback/206 pages/ISBN 0-933149-68-9
Uncommon Fathers may be purchased from the Sibling Support Project Amazon Associate Astore
Uncommon Fathers is a compelling collection of essays by fathers who were asked to reflect and write about the life-altering experience having a child with a disability. Nineteen fathers have taken an introspective and honest look at this deeply emotional subject, offering a seldom-heard perspective on raising a child with special needs
The first book written for fathers by fathers, Uncommon Fathers,
should also be helpful to partners, family, friends, and service
who will appreciate this rare forum and perhaps, for the first time,
from what these fathers have to say.
"This powerful collection of essays opens up the voices of fathers of disabled children in a fresh, new way. The stories are often elegantly told, moving, and rich in wisdom. Uncommon Fathers is a welcome addition to the literature, but more importantly, it is an honest and courageous book."
--Gilbert Gaul, Author of Giant Steps, and two-time Pulitzer Prize winner.
Uncommon Fathers is a protean anthology of human emotion, a poetic tour de force from the less apparent parent: fathers. Reading it, I was roller-coastered up and down and across and into such a gamut of insight and art that I indeed could not put it down...There is nothing—absolutely nothing—comparable to Uncommon Fathers, and nothing from any collections of parents' voices that exceeds it."
--H. Rutherford Turnbull, III, Co-Director of the Beach Center on Families and Disability, University of Kansas
Read about contributors to Uncommon Fathers in a recent Seattle Times article.
- Bob Dale: Creating Answers (Jessica, age 4)
- Nick Kappes (Andrew, age 5)
- Lloyd W. Robertson: The Hardest Lesson: Learning to Accept (Katie, age 5)
- Stan Reiff: A New Calling (Stan Jr., age 6)
- Ben Adams: Our Brave New World (Caleb, age 9)
- Irvin Shapell: The Bike (Jake, age 10)
- Richard C. Anderson: Walter at 10
- David Seerman: The Loneliness of the Long-Distance Daddy (Cassie, age 10)
- Joe Greenholtz: The Sky's the Limit, (Emi, age 11)
- Henry Jay Karp: If Not Always the Victor, Always the Hero, (Joshua, age 11)
- Harrison Dixon: My Inspiration and Hope (Mark, age 11)
- Greg Palmer: He Canters When He Can (Ned, age 13)
- Robley K. Yee: Heroes Come In All Shapes (Matthew, age 13)
- James C. Wilson: Best Friends (Sam, age 13)
- Larry Searcy: Loving from Afar, (Aaron age 14)
- Bill Dodds: A Mosaic (Tom, age 18)
- Milton Seligman: Confessions of a Parent/Professional (Lori, age 23).
- Charles A. Hart: Life's Illusions (Ted, age 24)
- Frank Burke: Life Goes On (Christopher, age 28)
Uncommon Fathers may be purchased from the Sibling Support Project Amazon Associate Astore
Links to selections:
my father moved through dooms of love
through sames of am through haves of give
singing each morning out of each night
my father moved through depths of height
--e. e. cummings
My son, Jay is 16 and moderately retarded. I think the most important question is not "What is mental retardation?" It is "What does mental retardation mean? What does it do to us?"
It was a lonely epiphany.
--Al Gore, when asked to describe the time following his son's accident
I sat in my advisor's office, new to the Northwest, new to graduate school, awed and intimidated by the institution and my advisor. Dr. Hayden (few dared to call her Alice) was a pioneer in early intervention, and was somewhat of a legend. When I met her in 1978, she was well past the University's official retirement age, but she still advised students--if what she gave could be called advice.
I had always thought of advice as counsel for a person to take or leave. Not so with Dr. Hayden. She wanted the University of Washington's Experimental Education Unit to have a program for fathers of infants with disabilities. And, because I was the only early childhood special education graduate student who happened to be male, Dr. Hayden "advised" me to be part of it. "We need to do something about these fathers!" she announced. (Like so many other efforts to reach out to parents, the University's earlier attempts to create a program for parents resulted in a program for mothers.)
I was delighted with my assignment. As a teacher, I had enjoyed the company of parents and "doing something about these fathers" sounded both novel and needed. Largely making it up as we went along, Greg Schell--a father of a child with Down syndrome--and I began planning the first meetings of our Fathers Program.
"Fathers?!" we were warned by our classmates and colleagues, "They never show up. When they do, they don't say anything!" To recruit men for the Fathers Program, Greg and I decided to try a Fathers Only Workshop at a nearby early intervention center. It did not begin auspiciously. Only three fathers showed up. With hands in their pockets, they looked at the walls with an expression that seemed to say "Why the hell did I let my wife talk me in to coming to this?" We looked at the clock: 7 p.m. The workshop was supposed to go until 9:30. What on earth could the five of us possibly talk about for two and one-half hours?
Our concerns, of course, were without merit. The conversation started slowly with one brave father describing his family's experiences, his views on life with a child who has a disability. As he spoke, the other fathers had what we would later call "aha!" experiences: "I can't believe that happened to you too!" they said, "Let me tell you what happened to us." As they discussed their children, their wives and their families, they quickly learned that they were not alone with their joys and concerns. Finding much common ground, the conversation snowballed. We ended the workshop at 10:30 and could have gone on longer.
This was not an isolated experience. During the eight years that we ran the Fathers Program, participants met twice a month to share frustration, information, and knowing laughs. Although their only common denominator was that they had children with disabilities, the men understood one another in a way that a coworker, best friend, or brother could not.
On occasion, we would run Fathers Only Workshops at national conferences. Participants--sometimes as many as 100--would exchange insights and war stories and validate each other's experiences. Often, the din of the conversation was such that we were asked "to keep it down" by presenters in neighboring rooms. Fathers became so involved in talking to their peers that we sometimes needed to shoo them out of the room at the end of the meetings and encourage them to continue their conversations in the lobby or at a nearby bar. All this from fathers who "don't say anything." Clearly these men have much to say, and much to offer one another.
In Uncommon Fathers, readers who are fathers will meet peers. They will develop a broader understanding of their own situation as authors share their views, concerns, and hard-earned joys. Fathers will find others who, like Rud Turnbull, search for the meaning in disability. Unlike Al Gore's, their epiphanies will not be revelations made in isolation.
Although the primary audience for Uncommon Fathers is other fathers of children with special needs, it would be regrettable if the readership ended there. Mothers who would like insight into what keeps their husbands up at night will benefit from the often achingly candid testimony of these men. Social workers, special educators, family counselors, therapists, academicians, researchers, and policy makers who wish to reform systems that treat fathers as "the other parent"--an afterthought--will do well to learn how these men strive to be vital participants in their children's lives and education.
The uncommon fathers represented in this book are a diverse group: Included are students, artists, teachers, a Christian missionary, a retired police officer, businessmen, attorneys, government workers, a rabbi, writers, a parole officer, and full-time activists, writing from locales ranging from upstate New York to Tokyo. Their children--ages 4 to 28 years--have autism, Down syndrome, cerebral palsy, hydrocephalus, hearing impairments, as well as undiagnosed disabilities that range from mild to severe.
The essays in Uncommon Fathers are arranged according to the age of the authors' children to give readers a perspective of how fathers' issues can change over time. These men were asked to comment on the time of diagnosis if they wished, but to focus primarily on here-and-now: What do you find yourself thinking about as you drive to work, take a shower, or mow the lawn?
In the end, the request to contribute to this book was patently unfair. In the space of approximately ten or so typewritten pages, contributors were asked to reflect upon topics that are among the most subjective, personal, and elusive imaginable: How did you learn of your child's diagnosis? What was your reaction? Was this different from the child's mother's reaction? How did other family members react? How has your perception of disabilities changed over time? Do you have concerns about your typically developing children? How has being the father of a child with special needs changed your life? How has it changed your view of your work? Has it changed your philosophy of life? Has it changed how you relate to your family? When you think about your child's future, what do you see? Along the way, what has helped? What didn't help? What advice would you have for schools and other agencies to assure that fathers are "brought into the loop"? What advice would you have for a fathers who just learned that his child has a disability? Despite this most difficult request, these men opened their hearts, minds, and souls to offer insights into a family member rarely described in any form of literature--popular, clinical or research.
Readers will find that the opinions and experiences of fathers of children with special needs are anything but monolithic. As might be expected from such a diverse group of men, the authors hold differing religious and philosophical interpretations of their children's disabilities. They possess a wide range of coping strategies. Some are upbeat and optimistic; others are still struggling; most are somewhere in-between. Despite their differences, recurring themes and common threads emerge from the essays of these uncommon men. Like E. E. Cummings' father, their passion, love and commitment to their children and families move them through profound depths of height, sames of am, and haves of give. Each, in his own way, is determined to sing each morning out of each night. Their families are lucky to have these men in their lives; we are lucky to have their thoughts.
When Ned was four he began exhibiting some classic autistic behavior, which I'm told is rare for a child with Down syndrome. He would go off into a corner for hours and babble incoherently to himself, while slowly, rhythmically rocking his body. We were concerned, of course, but not unduly. Otherwise Ned was a very happy, outgoing boy who was making good intellectual and physical progress. He especially liked phonograph records and television, and would listen to and watch the same material over and over again. His ability to entertain himself for hours, whether by record, video tape, or his own internal, unintelligible monologues, was often a relief for us, a respite from the intense attention he otherwise needed.
A few years after the monologues began, he was rocking and talking one Sunday afternoon while I sat reading the paper, not paying any attention to the meaningless recitation going on nearby. And I suddenly heard him say, clearly, precisely, and with feeling, "You're a very bad man, No, I'm a very good man, I'm just a very bad wizard." He was reciting The Wizard of Oz. And I had heard that one exchange between Dorothy and the Wizard because Ned instinctively knew that it was thematically one of the most important bits of dialogue in the film, so he'd given it a little extra in the performance. (That may be a father's fantasy, but I'm sticking with it.)
When he got to "There's no place like home!" that day, he started reciting the film again. He had memorized it, all of it, with appropriate sound effects. (His tornado was particularly spectacular.) I soon learned he had memorized all of the Disney Snow White too, as well as a Snow White and Puss In Boots I had written and videotaped for the Seattle Children's Theatre, most of the television episodes of Jim Henson's Muppet Babies, and the songs on a dozen different recordings by Raffi, Fred Penner, Rosenschontz, and others. It occurred to me that Ned had never been babbling incoherently, that all those years he was entertaining himself with the material he liked. I had underestimated him badly, and I've tried never to do that again.
Ned is almost thirteen now, and he still talks to himself for long periods, But now the stories he tells are his own stories, complex fantasies he creates and constantly revises about knights, dragons, Ninja Turtles, volcanoes, hot dogs, Mick Jagger, wizards, his pets, himself; all the things he finds enthralling. Sitting and listening outside the door when Ned is taking a bath is like listening to an old radio show, back when there was still some creativity in radio. Hundreds of characters wander through our bathroom two or three times a week, to do their turn on the stage in Ned's imagination and then wait in his memory for the next time.
Occasionally Ned will go off into his world in public, when we're waiting for a movie to start, or riding the ferry. I'll see people around us stare at him, then look away quickly, and their expressions will be of pity, "That poor boy," they are saying to themselves, "no mind at all, just babbling away like that. Too bad." They're making the same mistake I did, so I really shouldn't blame them; still, suppressing the desire to pass amongst such people with a baseball bat is one of the things I've had to work on as Ned's father.
I know how lucky I am that Ned is the way he is. And I don't mean because being the father of a developmentally disabled child has had a beneficial effect on me, has made me a more sensitive, caring, loving person. I hope it has, but whenever I hear other parents going on at length about the personal growth they have experienced as the caregiver for a special child, I want to--as I think Dorothy Parker once said--fwow up. Personal growth is valuable and necessary, an obvious and undeniable benefit of any parenting experience. But I've never thought my principal job as a father was to nurture and raise me. Recognizing how any situation has affected you is useful, but not if you become obsessive about those effects. Developmentally disabled children--all children, for that matter--are usually obsessive enough without parental role models.
I recently read a manuscript written by a man whose son also has Down syndrome. Page after page dripped with his new and unique opportunities to discover himself, get in touch with his inner person and, like, grow. He was having nothing but life-enhancing, spiritual experiences with his little Bobby. There was no mention of stubbornness, terrors in the night, constant respiratory problems or the refusal to eat anything that isn't brown. Everything was just peachy for these two. And though actual information about Bobby was minimal--it was all Dad's catharsis-of-the-week stuff--I began to think this father was raising a remarkable, extremely high functioning child. I envied and admired him. And then halfway through the manuscript, in a chapter about all the things Dad was learning about himself during toilet training, he mentioned offhand that Bobby is a non-reading, mostly non-verbal twelve-year-old who can neither feed nor dress himself.
I feel sorry for that father, and especially sorry for his son. Bobby doesn't have many obvious victories for them to enjoy together, so Dad has turned to his own spiritual awakening for enjoyment and consolation. Emotionally he seems to be living off his own accomplishments, as I'm sure he once dreamed of living off his son's. And though it would be grossly presumptuous of me to contend that Bobby is as low-functioning as he is because his father had become so self-obsessed, I think it is at least a possibility. Dad has used Bobby as an opportunity and an excuse to turn into himself. Ironically, by doing so he may have turned away from his son, the person he loves, but also the person who spoiled his dreams of the future and frightens him now.
I never consciously tried to avoid the pitfalls of parental self-aggrandizement because originally I didn't know they existed. I think I was blindly lucky in a choice I made. From the day our pediatrician called and said the genetic test was positive, I've tried to approach Ned's situation as logically, rationally, and realistically as possible. Part of that was concentrating on his immediate and long-range needs, and not on my own fears--or my ego.
I remember sitting on my front porch that sweet September evening when we first learned that Ned had Down syndrome, and suddenly having the chilling realization that, not for as long as we lived, but for as long as he lived, Ned would be our responsibility; not the state's, not his relatives', especially not his brother's. We could hope that some day Ned would be self-sufficient, and work as hard as possible with him towards that goal. We could trust that his older brother would take care of him in their adulthood, not because he had to, but because he wanted to. But we still had to be prepared for the physical, financial, emotional alternative--parental custody, even from beyond the grave. Loving Ned with all our hearts would never be enough.
That preparation, both of Ned and his world to be, has taken planning, patience, and research, including knowing what opportunities are available within the community. Ned was three weeks old when he went to his first infant stimulation class at the University of Washington's Experimental Education Unit. That was just the beginning of a quest for good schools, camps, and experiences, a quest that will never end.
Even so, I've found the essence of raising a special child is not in the grand questions, not in the philosophical discussion of the concept of private property in modern society, for instance, but the more immediate question of "What did you do with my watch?" While not losing sight of the big picture, it is the daily business of life, the million things we do at home with and for Ned, that seem to have the most beneficial effect on him, and us.
Just one example. I can't recall a time when Cathy or I haven't read to him in the evening right before he goes to bed, beginning with the simplest Spot The Dog and Curious George books when he was an infant, clear through to yesterday evening, when he and I read the newspaper together (Ned especially likes disaster news), another chapter of Beverly Cleary's Henry and Beezus, plus four or five poems. And the effect of that reading has been both general--contributing to Ned's unique imagination and dramatic flair--and specific. When he wakes us in the middle of the night now, sometimes he calls for us, but most often he picks up the book he's working on by himself, reads for a while, and then goes back to sleep.
His current interest is biographies -- Jefferson, Washington, Lincoln, especially Martin Luther King Jr. For ten Halloweens in a row Ned was the same witch, but this past year he finally wanted to be someone else. He wanted to be the Reverend Dr. King, as a tribute to a man he's read about and admires. It was a wonderful idea and we were proud of him, even if we didn't have the slightest idea how we were going to turn this little white kid into his hero without offending half the neighborhood, makeup-wise. (We decided on just a dark suit and glasses. To me Ned looked more like Roy Orbison than Martin Luther King, but he was satisfied.) As his father, I know the memory of this past Halloween and the Martin Luther King Dilemma will eventually overwhelm any memories of a decade of trying to talk a very stubborn little boy out of that ratty witch costume.
I'm making Ned sound like the perfect kid, a constant delight to everyone all the time. That is not my intention, and not the case. Just as dangerous as concentrating on your personal growth to the exclusion of your child, is convincing yourself that there's nothing all that different about a child with special needs, thereby ignoring or repressing the challenges, and the behavior, that is part of why the child is special in the first place. Both are ways to escape reality, and I've tried, less successfully I suspect, to avoid the latter as much as the former..
Somebody must say it. Developmentally disabled children can be a real pain in the butt, and there is no guilt in a parent admitting that to him or herself, any more than a parent should feel guilty because a "normal" teenager still leaves his dirty socks around. As his father I make allowances for Ned, because he is special, that I would not make were he just a typically tedious pre-teen.
His diet, for instance. Ned eats: wieners, which he peels; white toast without crusts; cheeseburgers as long as there are no sesame seeds on the outside of the buns and only ketchup, mustard, meat and cheese on the inside; vanilla ice cream out of cones which he then discards; cheese pizza; Chips Ahoy cookies; milk and Coke; dry Cheerios; and absolutely nothing else. He doesn't even eat candy, or any other kind of cookie, breakfast cereal or ice cream. And this has been going on for years. (Imagine the smell of a microwaved wiener, dripping with grease, at 6 a.m. Tuesday morning. Now imagine it for 2000 mornings in a row.) Ned's stubbornness about food makes long trips, restaurant visits, overnight stays and meals at the homes of friends a recurring hassle. But we put up with it, because he is Ned. And if, between the wieners and Cheerios, we can occasionally get him to nibble on some broccoli, or just try Grandma's manicotti, then it's a victory. We can go on dreaming that some morning he'll come downstairs and casually ask for a vegetarian omelet and a tankard of grapefruit juice.
For all his occasional obstinacy, though, the hardest thing about being Ned's father is contemplating the future. I want no more and no less than for Ned to be happy every day of his life. But I judge happiness on my terms, from my experience. Happiness for me is being married for 26 years to a woman I love, and having children I love as well. Happiness is having good and talented friends, interesting work to do, and the freedom to stop doing it for a while and just go somewhere. And Ned may never have any of these things.
I did a news story once about two wonderful people who are, as far as I know, the only Down syndrome married couple in America. So I know there is a chance that some day Ned will find a person to love and cherish, who will love and cherish him as much as we do now. But at best it's unlikely. Children of his own are impossible. He will probably never drive a car, never wander around Europe with a backpack and a friend or two, never have a job where he can say he made a difference in anyone's life but his own. The principal disadvantage of that decision always to deal with Ned's situation logically and realistically is that I can't shake it, even when I want to, even when I want to fantasize about a glorious future for him.
But that's a lot different than giving up. Only my own narrowness of vision makes me think that when Ned's 46, his idea of happiness will be what mine is now. And if there is some overlap, I know his mother and I have done all we can to get him ready. If he wants to wander around Europe when he's 20, at least he's known the countries he'll be able to visit since he was ten.
He will be a very good man, and maybe a very good wizard.
Greg Palmer has been writing professionally since 1968, principally for broadcast. His most recent project was as producer/writer/host of a PBS documentary series, "Death: The Trip of a Lifetime," which concerned how cultures around the world face life's end. The series first aired in October 1993, when Mr. Palmer's book of the series was published by HarperCollins. Greg has been the film and theater critic for Seattle's KING Television and a "signature" reporter for both NBC and CBS affiliates, winning 13 Emmy awards, the Peabody, and other honors. He is currently in pre-production on a PBS series about vaudeville, to be broadcast in 1995. Greg has also written seven plays for families that have been published and produced internationally. His last theatrical work, "The Magic Apple," was written in collaboration with Ned Palmer and based on his story of a prince, a dragon, and a wizard.
Excerpts from Uncommon Fathers copyright,
1997, Donald Meyer.
All rights reserved.