"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 really was. His infant daughter appeared fragile as a porcelain doll. His eyes rarely left her.

The ten men attending the group had never met before. As we went around the circle introducing ourselves, the father quietly gave his name and his daughter’s name, and he mentioned she had cri du chat and trisomy 10, a rare combination. After the usual uneasiness men experience in talking about concerns men never find it easy to talk about, a more relaxed air settled over the room. Topics discussed were broad: educational bureaucracy; physicians who don’t listen or 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 eighteen 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 allow 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 eighteen 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 special needs recognition and understanding, and most importantly, substantive programs -- not add-ons -- that speak to dads’ unique concerns. To do so gives a man an opportunity to come to terms with his personal losses, a place to gain needed information and resources, and the possibility of learning new skills in his journey to be the best father he can possibly be. In turn, the families of children with special needs can be born anew.

Kyle Pruett, in The Nurturing Father, declares that fathering is "the single most creative, complicated, fulfilling, frustrating, engrossing, enriching, depleting endeavor of a man’s life" (p. 282). It is an undertaking replete with immense challenges and boundless joys. The past thirty years have forever changed the ways men approach these demands. Once thought to have a limited role in the parenting process, that of family breadwinner, fathers are now considered vital - indeed essential - to family 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 are choosing to stay at home while mothers pursue full-time employment. These changes aren’t without added stress and confusion.

David Bell of Harvard remarks that as fathers "we usually did not find out how to balance full participation in work and in family. Now we are exploring uncharted territory, with all of the missteps and false starts that such exploration requires." (p.141-42). Men are being confronted by inadequate role models, a lack of child-rearing information and education, and a set of values needing re-evaluation and revision. As described by Sirgay Sanger:

Most of the deeper pleasures of parenting arise from its nurturing aspects. The satisfaction of knowing you can soothe a child in a special way or please him not only is deeply validating but also exercises an elemental pull on a parent. The more parents find that they can do for a child, the more they want to do. Because of the different way they are socialized, women know this but men don’t. They will have to be helped to discover it. (p. 198)

While fathering is an old game, it is indeed now being played with new rules.

There is formidable mythology about men being "derelict dads," absentee fathers, irresponsible in carrying out their fatherly responsibilities. There is a residual of the old belief that men are to do the 3 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, and just plain buffoons. Cliff Huxtable on the Cosby Show isn’t really much different from 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 indeed some men have limited perceptions of the roles they can play in regards to their children, these roles take on new meaning if the child is chronically ill or disabled. Indeed, almost all men have been steeped in being 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. For many men the Vince Lombardi credo still reigns supreme: "Winning isn’t everything, it’s the only thing." While there is nothing inherently negative about these roles, they do not work very effectively when you have a child with special needs. Dads often cannot protect their families from the problems or control the outcomes, and their self-sufficiency often means they don’t know what to do with the powerful feelings that rage inside of them. A Nevada father, Kenneth Braker, illustrates these ideas eloquently when he comments:

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 means for unleashing, developing and strengthening their nurturing and caretaking capacities.

Of considerable consequence is what theologian James Dittes calls our "culturally defined ideas of manliness" (p. 2) which potentially removes a man from his innate capacity to bond with his child. Old male models, part of the dominant Western culture, die slowly. Kyle Pruett says that a man often has been taught that "the economic security of his family is his most sacred, possibly only, legitimate domain" (p. 18). To believe this is to remove a father from nurturing his children. 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 men with special needs children are discovering they don’t need to be limited by the stereotypes of what they "should" be. They have gained increased understanding about the importance of bonding with their children, have accepted the realities of the problems at hand, and become active problem-solvers for their children’s needs. Dale Loftis states:

We don’t have to pretend to be so strong. 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 roles 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 special needs drastically alters this mobile and places immense pressure on a 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 special needs to living with a strident rock ’n’ roll station blaring full blast, nonstop, twenty four hours a day. According to Arletta Hudgens, chronic illness and disabling conditions are:

... powerful forces that often control the structure, the actions and reactions of family members. They can effect sweeping changes in family roles, realign subsystems within the family, and isolate family members from each other and from outside influences. Consequent anger and guilt can change a normally functioning family into a frustrated, rigid and unhappy group of people. (p. 68)

The extensive stresses evoked in a family with a child with special needs 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 (Cummings). Helplessness and immense frustration may ensue. A father’s self-esteem may be at risk. Lamented one dad at a support meeting, "That I can’t control the disability still leaves me confused; that I can’t seem to do anything just drives me crazy."

Research tells us fathers of children with special needs 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 most likely set the tone for the family’s acceptance of the child. If that is true, we cannot afford to leave men isolated, struggling on their own to make sense out of what is happening in their lives.

These feelings of isolation are exacerbated by a service delivery system that too often excludes and disregards men. "It’s as if I don’t exist when the doctors talk about our child" declared the father of a nine-year-old with cystic fibrosis. As the great majority of providers are women, some men find it difficult to relax and believe they are welcome in the care of their children. Because services are offered during the day when most men are working, mothers -- even though often employed themselves -- generally become the resident "experts." A father’s base of information regarding the child may be very limited. Even parent support programs, while inviting involvement of couples, are primarily made up of mothers, and the few men who attend often feel uncomfortable and out of place. The work place offers little encouragement, as many men find it awkward to share personal concerns and feelings with their peers. In the minds of many fathers, stories about a child with special needs cannot compete with success stories told by other men around the lunch table.

Men must find it acceptable -- and expected -- that they engage in their children’s lives in responsible, caretaking ways. Pruett and others make it eminently clear that men are capable of being excellent nurturers, with innate parenting skills. However, they parent differently than women do, not better, but differently. The positive results of such father involvement are endless. The family begins to rebalance itself, channels of communication are broadened, and new doors are opened for fathers to discover the importance they have in the lives of their children. As described by Pruett, "A father may embrace his children, but until he embraces his own unique, irreplaceable value to them as a parent, he does not have as much in his arms as he thinks." (p. 281)

Fathers have interests and concerns quite different from mothers, typically a function of their family roles. How do we engage men in becoming supportive, powerful figures in the lives of their children? The following ideas are suggested as starting points:

- There needs to be an attitude and a willingness to involve men, even when it seems they are not interested. This might not be the child’s biological father. Men that emotionally "touch" a child’s life will also be superb supporters; this will include grandfathers, step-fathers, extended family members, neighbors and friends.

- All family members must admit when they need assistance. They must learn to ask for this assistance! Encourage and expect the involvement of all family members, fathers included!

- Expect a balance in the family where responsibilities and tasks are shared. Men can advocate for their children, learn how to feed and use adaptive devices, and understand the intricacies of the laws that protect a child’s rights. They must be given a chance to learn these skills.

- Men need places to share their feelings, especially their fears, what they too often consider "weaknesses." Men with special needs children have an overload of feelings, many they don’t recognize or understand; they have culturally tuned them out. Many hold back for fear of losing control, not being understood or fearful of being seen as weak or a burden. Look beyond the actions and see the messages being sent out. Remember that "what you see isn’t necessarily what is going on." Men often need time and patience to accept the "truth." Fathers need places to grieve their losses and celebrate their joys; to do otherwise is to live in profound loneliness. Both men and women need to be the designated "feelers" for the family.

- Value a father’s offerings as different from a mother’s. Promote those differences. Lines of communication must always be kept open. Many men want to use their problem-solving skills, whether that be through advocacy, working with health care providers, or building adaptive devices.

- Fathers make mistakes; that’s okay. All family members do. Parenting needs to take place without pressure or embarrassment. Men need to expand their knowledge about children. The message needs to be: involvement is expected and necessary. Men should not be allowed to settle into the old, comfortable roles and routines they know best. This is a loss for the entire family.

- Most men do not have models of parenting that are highly nurturing, caretaking or self-disclosing, but they can learn. Men need to talk to their own fathers and heal old wounds, finish old business, listen to the stories of growing up their fathers have to tell. The writings of Robert Bly, Sam Keen and other scholars are invaluable in exploring these concerns.

- Men being part of a fathers’ group or working with other dads one to-one is invaluable; such peer support reduces pressure and promotes openness of sharing. Research shows that when a man joins a support program for fathers there is reduced depression and fatigue, improved family communication, increased sharing of parental responsibilities, and most importantly, increased acceptance of the child.

Let me conclude with a final story. Paul Malinowski joined our fathers’ program three years ago. He rarely missed a meeting, yet he spoke infrequently. One Spring morning, when just a handful of dads were in attendance, Paul opened up. "I have been rather quiet during these meetings, and I would like to share a couple of things with you. During birth my daughter Laura suffered a massive hemorrhage and incurred much brain damage. A few days later she became comatose, and it was suggested we consider terminating the breathing apparatus that kept her alive. I visited my daughter at noon on a Saturday, believing this would probably be the last time I would see her alive. Given little hope for recovery, it was feared she would live in a vegetative state and might need to be institutionalized. I would be less than honest with you if I said it has been easy. While Laura has made remarkable improvement, far beyond anyone’s expectations, my relationship with my wife has often been strained due to the heightened stresses of raising a child with so many special needs. My being a participant in this group has been invaluable. It has allowed me to accept Laura for who she is, and I have come to love her a great deal. I want to thank you for that. Each time when we finish at noon, the same time I visited her in the hospital, I go down to child care, pick her up, and say aloud, ’Laura, I love you, you are the greatest kid in the world.’ " By now there was great emotion in the room. Paul continued. "I also need to tell you I have been transferred to Denver. I will miss this group and all of you a great deal. Thank you for what you have given me." We watched Paul head down to the child care room, and indeed, as he picked Laura up, he said out loud, "Laura, I love you, you are the greatest kid in the world." It was a powerful moment for all of us, and we were very sorry to see Paul leave. That Fall I received a letter from him; he said the move had gone well, and he enjoyed his new job. Furthermore, he had been to a local agency and asked them to start a fathers’ group, and.... he had become the new leader! In a subsequent letter he made the following remarks: "I feel proud of her [Laura] and even proud of myself -- that I’m a damn good father. The irony is, I probably wouldn’t have been if I didn’t have a special needs child."

Children need and deserve the love and attention of both parents. As families and professionals we need to fling open the doors and support fathers in the most loving, supportive means possible.

Published as a two part article in Exceptional Parent magazine, May, June, 1992.

REFERENCES

Bell, David. (1986). Conflicting interests. In The Fathers Book: Shared Experiences. Kort & Friedland (Eds.). Boston, MA: G.K. Hall and Co.

Cummings, S.T. (1976). The impact of the child’s deficiency on the father: A study of mentally retarded and chronically ill children. American Journal of Orthopsychiatry, 462: 246-255.

Dittes, James. (1984). Yale Weekly Bulletin and Calendar, November 19, 2.

Hudgens, Arletta. (1979). Family oriented treatment of chronic pain. Marital and Family Therapy, 5, 67-78.

Pruett, Kyle. (1987). The Nurturing Father: Journey Toward the Complete Man. New York, NY: Warner Books.

Streiker, Lowell. (1989) Fathering - Old Game, New Rules. Nashville, TN: Abingdon Press.

Sanger, Sirgay & Kelly, John. (1987). The Woman Who Works, the Parent Who Cares. Boston, MA: Little, Brown and Company.

The quotations used throughout this article are from fathers of children with special needs. The fathers quoted include men from a broad spectrum of racial, ethnic, geographic, and socioeconomic backgrounds. Their words are compelling reflections of the thoughts and feelings of the many men who are special dads to their children. Their efforts are truly appreciated.

Published October, 1993 Exceptional Parent magazine. We thank them for their permission to reprint this article.

© 1993- all rights to this text belong to James May, jmay@seanet.com