Printer Friendly

For fathers of children with disabilities.

A man needs an opportuty 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 disabilities can be born anew.

There are thousands of fathers of children with disabilities who 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.

Research tells us 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. Recent studies suggest 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, 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 or 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. Because the great majority of care providers are women, some men find it difficult to relax and believe they are welcome in the care of their children. Since services are offered during the day when most men are working, mothers -- although 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 the involvement of couples, are primarily made up of mothers, and the few men who do attend often feel uncomfortable and out of place. The work place offers little encouragement since 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 a disability cannot compete with success stories told by other men around the lunch table.

Men must find it acceptable -- and expected -- to engage in their children's lives in responsible, caretaking ways. Men are capable of being excellent nurturers, with innate parenting skills. However, they parent differently than women do -- not better, just different. The positive results of such father involvement are endless. The family begins to restore the equilibrium lost when the child with a disability was born. Channels of communication are broadened, opening new doors for fathers to discover the importance they have in their children's lives.

Fathers have interests and concerns quite different from those of mothers. These differences are typically a function of their family roles. How do we engage men in becoming supportive, powerful figures in their children's lives? The following are suggested 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, including grandfathers, stepfathers, extended family members, neighbors and friends, will also be superb supporters.

* All family members must admit when they need assistance and 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 and fears -- what they too often consider weaknesses. Fathers of children with disabilities have an overload of feelings, many of which they don't recognize or understand because they have culturally tuned them out. Many hold back for fear of losing control, not being understood or 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 really 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 parenting models that are highly nurturing, caretaking or self-disclosing, but they can learn. Men need to talk with 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 Kyle Pruett, Robert Bly, Sam Keen and other scholars are invaluable in exploring these concerns.

* Being part of a fathers' group or working with other dads one-to-one is invaluable. Such peer support reduces pressure and promotes openness and 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 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. Being a participant in this group has been invaluable to me. 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 to 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. Graham Greene, in his novel, The Power and the Glory, says "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 has an M.A. in applied behavioral science and an M.Ed. in guidance and counseling from Whitworth College, lives in Seattle, Wash., with his wife Gina. May is Project Director of the National Father's Network which advocates for fathers of children with disabilities through trainings, development of support programs, a quarterly newsletter and curriculum development. For more information, contact May at the Fathers' Network, Merrywood School, 16120 NE Eighth St., Bellevue, Wash. 98008, (206) 282-1334. The first part of his series, New Horizons for Fathers of

Children with Disabilities, was published in Exceptional Parent in April/May 199
COPYRIGHT 1992 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1992 Gale, Cengage Learning. All rights reserved.

Article Details
Printer friendly Cite/link Email Feedback
Title Annotation:New Horizons, part 2
Author:May, James
Publication:The Exceptional Parent
Date:Jun 1, 1992
Previous Article:New horizons for fathers of children with disabilities.
Next Article:Changing practices.

Related Articles
Play is important.
New horizons for fathers of children with disabilities.
Five steps to becoming your child's best advocate.
Fathers are caregivers too!
A whole new ballgame: reflections on a year of Fathers' Voices.
Accepting Pinocchio.
Time for us.
The Fatherhood Industry.
The labyrinth: negotiating the intricacies of future planning.

Terms of use | Copyright © 2016 Farlex, Inc. | Feedback | For webmasters