Magazine article The Exceptional Parent

New Horizons for Fathers of Children with Disabilities

Magazine article The Exceptional Parent

New Horizons for Fathers of Children with Disabilities

Article excerpt

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). …

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