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New horizons for fathers of children with disabilities.

A few years back I helped organize a fathers' support program on the East Coast. It was there I met a father who has remained forever etched in my mind. He was a smallish man, with somewhat fragile features. He was carrying his daughter crooked in his right elbow, like a football ready to be handed off for an end run. A diaper bag was casually slung over his left shoulder. It was difficult for him to make eye contact, and he was hunched over so that he looked smaller than he actually was. His infant daughter appeared as fragile as a porcelain doll. His eyes rarely left her.

The 10 men attending the group session had never met before. As we went around the circle introducing ourselves, the father quietly gave his name and his daughter's name, and mentioned she had cri du chat and trisomy 10, a rare combination. After the usual uneasiness men experience when discussing concerns they find difficult to talk about subsided, a more relaxed air settled over the room. The topics discussed were broad: educational bureaucracy; physicians who don't listen or who talk in "jargon"; and the difficulty of accepting a child's slowness in grasping everyday tasks.

Bent over in a manner that spoke of sadness and resignation, the man continued to cradle his daughter. Asked if he had some thoughts to contribute to the discussion, he replied quietly, "Cloudy days. I want to speak about my cloudy days. My child was not supposed to live more than six months, but she is now 18 months old, so I guess she wants to live more than the doctors thought. I love her more than anything in the world."

Haltingly he continued. "My wife would like to have her institutionalized, but I will not a low that to happen. I went to a genetics counselor and had some tests done; both defects have been traced back to me. I would have given anything to have known that before she was born.

"I seem to have cloudy days, a kind of gloom that hangs over my head. I can't quit thinking about my daughter and the life she has. If I tell my feelings to my wife, she can't handle them and she will again want me to have our child institutionalized. For 18 months these cloudy days have been a part of my life. I would like them to go away."

This man, and thousands of men like him, demand our attention. Families and professionals now have the chance to build new bridges, to dramatically construct a vision that gives fathers of children with disabilities recognition and understanding, and most importantly, substantive programs - not add-ons - that speak to dads' unique concerns. A man needs an opportunity to come to terms with his personal losses, a place to gain needed information and resources, and the possibility to learn new skills on his journey to be the best father he can possibly be. In turn, the families of children with disabilities can be born anew.

The past 30 years have forever changed the ways men approach the demands of parenting. Once thought to have a limited role (that of the family breadwinner) in the parenting process, fathers are now considered vital - indeed essential - to the family's health and well-being. As fathers are now routinely present in the birthing room during delivery, so too are they directly engaged in child caretaking tasks and responsibilities. Increasing numbers of men are choosing to stay at home while their wives pursue full-time employment. These changes aren't made without added stress and confusion. Men are being confronted with inadequate role models, a lack of child-rearing information and education, and a set of values needing reevaluation and revision. While fathering is an old game, it is now being played with new rules.

There is formidable mythology about men being "derelict dads," absentee fathers, irresponsible in carrying out their paternal responsibilities. There is a residual effect of the old belief that men are to do the three P's: provide, protect and procreate (and maybe barbecue on the side). The media has often contributed to the portrayal of fathers as stupid, macho, sex-crazed buffoons. Cliff Huxtable on The Cosby Show isn't really much different than Ward Cleaver on Leave It to Beaver. The entire family conspires to work around his foibles, and he is the same "I-can-solve-all-problems, I'm-in-control-of-everything" little boy shown for the past 30 years. Such stereotypes are simple-minded and self-limiting, and the results are stifling to what men ultimately can become.

While some men admittedly have limited perceptions of the roles they can play regarding their children, these roles take on new meaning if the child has a chronic illness or disability. Indeed, almost all men have been steeped in the notion that they must be providers who are strong, in-control, protective, competitive, rational problem-solvers. Self-sufficiency (the Marlboro Man riding west ... alone) is revered. Feelings are often kept inside.

While there is nothing inherently negative about these roles, they do not work very effectively when you have a child with a disability. Dads often cannot protect their families from problems or control outcomes, and their self-sufficiency often means they don't know what to do with the powerful feelings that rage inside them. A Nevada father, Kenneth Braker, illustrates these ideas eloquently when he says, If we could only learn to share readily the things that are stored up deep within. Then we could possibly avoid the tragedy of stumbling over our own hurt and get on with the task of helping those who need us."

Men must ultimately find the means for unleashing, developing and strengthening their nurturing and caretaking capacities. Old male role models, part of the dominant Western culture, die slowly. Even Webster's dictionary defines nurturing as "feminine, ladylike, female, gentle, tender, womanly." It's as if men are not even capable of such caring, sympathetic responses.

Many fathers of children with disabilities are discovering they don't need to be limited by the stereotypes of what they "should" be. They have gained an increased understanding of the importance of bonding with their children, have accepted the realities of the problems at hand, and have become active problem-solvers for their children's needs.

"We don't have to pretend to be so strong," Dale Loftis says. "We can admit that life does hurt sometimes, that my child does have some problems, that I have lost that perfect child of my dreams. Having admitted this, I am now free - free to meet the challenges of tomorrow; free to be excited about even the smallest progress; free to make those adjustments necessary to give my son the best family I can give, to be the best dad I can be."

Fathers of children with special health care needs and disabilities confront immense challenges every day. They must reconcile their conflicting conceptions of their role as fathers and find new beliefs and expectations that incorporate and encourage their children's full growth and development. In sum, they must redefine themselves as fathers! What is this experience like for a man? Why is it so demanding and often so difficult? What are the feelings associated with such drastic changes?

To answer those questions, fathers need to be placed in the context of their families. When we talk about families, the whole is greater than the sum of its parts; they are complex entities and in constant change. All family members are interdependent, interconnected; what happens to one clearly affects the others. Like a mobile, family members are in balance with each other. Because of their inherent resilience, families can stand a certain amount of buffeting and maintain themselves well. However, remove or severely alter a part of the mobile and it will collapse.

Having a child with a disability drastically alters this mobile and places extreme pressure on the family. Communication may be strained, finances can be compromised, resources are often limited, and parental roles may become stratified. Family members often feel isolated, helpless and neglected. Life will never be the same. One dad likened having a child with a disability to living with a strident rock |n' roll station blaring full blast, nonstop, 24 hours a day.

The extensive stresses evoked in the family of a child with a disability can leave a father - indeed, all family members - depressed, weak, guilty, powerless ... and very angry. The dreams a man brings to his child's life - lineage, ego fulfillment, athletic and vocational achievement - are threatened. All fathers today, even those quite uninvolved with their children, will feel the loss more profoundly than men just two generations ago. Helplessness and frustration may ensue. A father's self-esteem may be at risk. "That I can't control the disability still leaves me confused; that I can't seem to do anything just drives me crazy," lamented one dad at a support meeting.

Research tells us that fathers of children with disabilities have universal feelings of failure and guilt. For many men, it is difficult to accept the reality of the situation at hand. Some are embarrassed by the child's physical appearance and lack of developmental appropriateness. Men have always rejoiced in being physical with their children. When that is denied or severely altered, many men become confused on how to communicate with their children. Recent research suggests that fathers are most likely to set the tone for the family's acceptance of the child. If that is true, we cannot afford to leave men isolated, strugling on their own to make sense of what is happening in their lives.

Children need and deserve the love and attention of both parents. Graham Greene, in his novel The Power and the Glory, writes "there is always one moment ... when the door opens and lets the future in." As families and professionals we need to fling open the doors and encourage fathers in the most loving, supportive means possible.

James May lives in Seattle, Wash., with his wife, Gina, and is Project Director of the National Fathers' Network at the The Merrywood School in Bellevue, Wash. May has a master's in applied behavioral science and an M.ed. in guidance and counseling from Whitworth College. He has had rheumatoid arthritis since the age of 14 and works with the American Juvenile Arthritis Organization's Partnership Training Program.

Mr. May wishes to note that the quotations used throughout this article are from fathers of children with disabilities from a broad spectrum of racial, ethnic, geographic and socioeconomic backgrounds. Their words are compelling reflections of the thoughts and feelings of many men who are special dads to their children. Their efforts are truly appreciated.
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Copyright 1992 Gale, Cengage Learning. All rights reserved.

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Author:May, James
Publication:The Exceptional Parent
Date:Apr 1, 1992
Previous Article:The Individual Education Planning Committee: A Step in the History of Special Education.
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