Fathers of Children with Special Needs
by James May

"I thought about Noah and how we would never get over him. He’s an affliction here to stay, one that continually unfolds."

-Josh Greenfield

Josh Greenfield, in his painfully knowing story, A Child Called Noah, reveals the terrible ambivalence he feels as a father regarding his autistic son. This "affliction" is the greatest love of his life and also his fiercest enemy. Coming to terms with those bittersweet feelings is Josh Greenfield’s greatest challenge. As a man, his cherished ideals for a son have been irreparably shattered. He must now reconcile conflicting conceptions of his role as a father and find new values and expectations that incorporate and encourage his child’s full growth and development.

Men are increasingly discovering the many joys of active involvement in their children’s lives. The special bond between father and child produces measurable, positive effects in regards to a child’s self-esteem, sexual identity, intellectual growth, curiosity and social skills. Current literature illuminates dads as superb caretakers, full of warmth, support, sensitivity and care. However, this involvement can be sorely tested when a child has a disability or chronic illness. The dreams men bring to a child’s life, lineage, ego fulfillment, athletic and vocational achievement are threatened.

A man’s ability to be an active part of his child’s life greatly depends upon his previous learnings. Men traditionally have been taught to be providers, problem solvers, protectors, competitors and controllers. They glory in being self sufficient, in charge, and strong. A child with special needs often can defeat such roles and render a man depressed, weak, guilty, powerless -- and very angry. By default a mother may be conscripted -- unwillingly and unwittingly -- into being the child’s full-time caretaker.

Fathers of special needs children perceive few support systems in their environment; commonly they report feelings of isolation and loneliness. Great strain may also be placed upon the marriage and extended family. A man must push past his denial and develop new paths of involvement in the child’s life. He will need to learn appropriate means for communicating and playing with his child, who may receive sensory stimulation and movement quite different from a non disabled child. Of even great importance are places for the man to work through his grief, anger and depression.

Professional services generally have been offered during a father’s working hours. Mothers, even though often employed themselves, become the resident "expert" about the child’s personal, medical and educational needs. Unless the couple has strong, effective communication patterns, father falls increasingly behind in his knowledge about the child. Parent support programs, while encouraging involvement of couples, are typically made up of women. The few men who do attend frequently feel uncomfortable and out of place. The workplace offers little encouragement; many men find it awkward to share personal concerns with their peers, and a child with special needs just cannot compete with success stories told around the lunchroom table.

Many men have been taught that feelings are to be hidden. Painful emotions may be camouflaged by addictive behavior (e.g., overwork or abuse of alcohol), and outward denial ("I’m just fine," "The kid is doing great"). Yet for a man to embrace his child’s personal betterment, he must be given a chance to explore his feelings in a supportive environment.

What will encourage men to willingly engage in their children’s lives in responsible, nurturing ways? Or are we, as professionals and parents, contributing to fathers being a neglected population? All stereotypes must be discredited. The effect of adhering to culturally defined ideas of manliness removes a man from his innate capacity to bond and nurture his child. To counteract such fiction, increased attention by professionals, early intervention agencies, schools and hospitals must be given to the involvement of fathers with their children. Sponsor a "Pop ’n Tots" night, a special classroom time where dads participate in activities with their children. Develop flexible scheduling that encourages men to attend an Individualized Education Plan or a child’s therapy session. When calling home to talk with mom, also talk with dad. If the couple is divorced, make sure both parents receive full information about the child’s progress. Efforts must continue to increase the numbers of men in the fields of early childhood and special education. Of particular value are programs which encourage men to be each other’s best resources. As Coordinator of the National Fathers Network, I continually have seen the power of men assisting and supporting other men. Programs for fathers of children with special need assist men to come to terms with their pain and share the love and joy they have for their kids.

The positive results of father involvement are endless. We know family fatigue, stress, isolation and depression for all family members is lessened. Families begin to rebalance themselves in appropriate, healthy ways. Our challenge then - as parents and professionals -- is to dispute old mythologies and open new doors so that fathers may embrace the irreplaceable value they have for their children.

This article was published in the Family Resource Coalition Bulletin, 1992. We thank them for their permission to reprint this material.

© 1992 - all rights to this text belong to James May, jmay@seanet.com