It became obvious that he was looking up in order to keep the tears in his eyes from overflowing. As he slowly lowered his head and faced the other men, a tear rolled slowly down his left cheek. What an awkward but tender expression of male emotion. The man who was sitting on Ted's right reached over and put his arm around his comrade. This incident was the catalyst for the other men to open up, and many did so with tears in their eyes and deep feeling in their voices.

      One man's reluctant openness released the other men from the taboo against expressing their depth of feeling. Is it because we have held it in so long that men believe that if we cry the tears won't stop? As we approached school age, most of us were taught that "big boys don't cry."

      To enforce that injunction, those who couldn't hold back the tears had to endure the humiliation of being called a "girl" or a "sissy" or a fairy." But where do the tears go? Perhaps as my own father once observed, "we men just cry on the inside."

      My own story is similar to those of  the men in the room, for I too have a child with a disability. Nineteen years ago, swept away by the electricity of the moment, my heart pounded with excitement as I held my newborn son's soft delicate body next to my heart. He was all I had dreamed he would be as our eyes met and locked onto each other for the first time. Visions of playing baseball and building model
airplanes together and having a warm, close relationship danced in my mind's
eye.

      Tariq's life flowed through the first eighteen months of his life as he rolled over, raised his head, began creeping, then crawling, cruising, triumphantly walking, and then talking. Then he got an ear infection, and the train went off the track. That exciting time when everyday seemed to bring a new accomplishment was gone. He stopped talking, stopped playing normally, and began flapping his arms in a strange repetitive manner. His life and mine have never been the same.

      Eventually after years of early intervention, my boy was diagnosed with autism and mental retardation. He never spoke again and never learned to read or write. Now eighteen, he's extremely active and still doesn't understand danger. It was confusing and bewildering not knowing which end was up--feeling so badly and yet having an adorable child with a serious problem." A grief beyond words, where there was no death, and  a severely disabled but normal looking child who I have loved as much as life itself.

      I thought I would change him, and make him the boy I wanted him to be. But he has changed me, and helped me to become the man I needed to be. He taught me the meaning of unconditional love--to honor his sacred right to be loved for who he is -- not what he has achieved lately, how he looks, or how much money he will earn. What a priceless lesson he has taught me in his silence and without words--like a Buddha.

      The "New Man"

      Until the 1970's, the role of the father in child development was largely ignored. While regarded as providers and protectors, fathers were not expected to be involved in day-to-day parenting activities, with the notable exception of discipline. Who, for example, doesn't remember hearing "Wait until your father gets home?"

In emphasizing the undeniable importance of mothers, social scientists lost sight of the father and the larger family context in which children grow and develop. The word parent became synonymous with mother. This same trend applied to fathers of children with disabilities.

      By the time fathers were "rediscovered," many men were frustrated with their traditional roles. Many had found that the "duty" to be a successful breadwinner had sometimes choked the natural instinct to nurture, and that they could instead be tender and nurturing with their children and provide discipline too. As increasing numbers of women worked outside the home, fathers became of necessity more involved in the day-to-day care of their children. Michael Lamb, Ph.D., a leading scholar on fathers, revealed some significant differences between mothers and fathers behavior with their newborn infant. Mothers spend more time attending to the infants' basic needs while fathers tend to play more. Fathers are also observed to be more vigorous and rougher in their play than mothers.

      Mothers and fathers initially respond differently to a child with a disability. Fathers seem less emotional and focus traditionally more on long-term problems such as financial concerns. Mothers respond openly with their emotions and are engaged with the often overwhelming daily care of the child. Fathers who are less involved in daily interaction with their children tend to have a prolonged period of denial about the disability and its implications. The growing literature about men tells us that most avoid the direct expression of feelings, other than anger or frustration.

      We don't fit the image of the perfect dad as Robert Young portrayed in
"Father Knows Best." On the other hand, we are far from the warped stereotype that is depicted in the popular current image of Homer Simpson. Our struggle is to continue the traditional role while taking on new responsibilities that few have been
prepared for. In fact, we are creating new images for our children to improve upon.

      Connecting Through Sorrow

      What are men expected to do in the face of loss? Keep the lid on emotions, taking charge of practical details, supporting others, and taking loss as a challenge of traditional masculinity are all part of the script. Men are not expected to lose control of their emotions, openly cry, worry, or express overwhelming sadness. In caring for one's special child, a father can find his mood more positive when actively involved with his wife in helping to meet their child's needs and wants. Standing by and watching a child's struggle and a wife's pain is more heartbreaking than pitching in and helping with the work. This sort of involvement can break the irresistible pull of grief. Many men find it hard to talk openly about their feelings with their wives because they think they are expected "to be strong."

      Each man must find his own way through the grief. For men perhaps the greatest frustration is that they cannot fix everything and make it better for their wives or their children. Love, is not enough. The pain that accompanies this realization makes you go places you never planned to go. There is an immediate need to connect with our partners and others despite our clumsy attempts at sharing and intimacy. It takes time to acknowledge feelings and let them be heard. Even though fathers initially see themselves primarily as support people to their wives and children, they are able to acknowledge their own needs once they get together with each other. Breaking through this wall of their own emotions helps fathers to work through and deal with their own grief.

      Facing Pain

      In general, men tend to drift away from their friends after marriage. Having a child with a severe disability, which can be isolating, makes it even more difficult to maintain and build connections with other men. What do you do when you can't brag about your child's accomplishments the way other men do? What do you say when you're asked how your child is doing? How do you handle that choked-up feeling you get when you're searching for the right words?

      The script states that when men are faced with loss, they are expected to keep a lid on emotions, take charge of practical details and support others because they think they are expected "to be strong." Their greatest frustration is that they cannot make the situation better for their wives or children. The pain that accompanies the realization that it takes more than love creates an immediate need to connect with others experiencing the same thing. Fathers initially see themselves as support people to their wives and children, and not until they meet with other fathers are they able to acknowledge their own needs. By facing others who are going through the same complex emotions, fathers can break through the wall of their own emotions to work through and complete their own grief.

      What Helps Men

     Here are a few suggestions of ways men can make further progress.

1. Find other men to share thoughts and feelings with. The National Fathers' Network at www.fathersnetwork.org is a great place to start. It features many essays by fathers who are going through what you are experiencing.
2. Keep a journal of your thoughts, feelings and experiences. Sometimes our inner most feelings come out when we write.
3. Think about what you would feel if you weren't angry, grumpy or irritable. What's underneath those feelings?
4. Realize that when a woman wants to talk about a problem, she doesn't always want you to fix it--she may just want you to listen or tell what is on your mind.

      Help for Their Wives

      Sometimes it seems that men grieve on the inside, while women grieve on the outside. In my years of working with fathers, I have learned that the following is what they want from their partners:

1. Remind your husband that you don't want or need him to fix everything, merely to listen and show he cares.
2. Tell him what he is doing right; it helps him feel valued and secure in the marriage.
3. When possible ask for help in finding solutions, even if you think you already have one. When this is the goal, it is easier for a man to listen  and not be overwhelmed by a woman's emotions.
4. Plan time together as a couple. This is the first thing to be lost when a couple is under the enormous pressure of having a child with special needs, and taking care of your relationship is central.
    

      Conclusion

      It's obvious that men have a different tone of voice than women. What's not so obvious, but equally true, is that men have a different tone of grieving and feeling. We are not defective, but we are different on the average. That diversity contributes to the richness of human experience. Sometimes we tend to be philosophical. One example comes from a family I met recently who has a charming four-year-old son with autism. Accepting and coping with this very active child has been trying for this couple, particularly because the father has cerebral palsy and can't chase after his boy. At a recent support group for parents, this dad shared the insight that his son and other children with disabilities, and he himself "are not the children of a lesser God." For myself, I didn't get the baseball games and the model airplanes, but I did get a special relationship that is as warm and close as I ever dreamed of. All parents are evolving, learning, and changing. Perhaps our children teach us as much or more than we teach them. Every child's life is a gift, but every parent must reconcile their actual child with the dreams and fantasies they had prior to the birth of their baby. Indeed with their gift for teaching their families and the world about unconditional love, children with special needs may be more like guardian angels.

      Robert Naseef, Ph.D. is a psychologist who lives in the Philadelphia
area with his wife, colleague, and best friend, Cindy. Their blended family
includes three daughters, Antoinette, 18, Kara, 8, and Zoey 5. Tariq lives
at the Devereux Foundation's Kanner Center in nearby West Chester,
Pennsylvania. The story of his journey with Tariq and his work with families
of children with special needs is told in his book. Special Children,
Challenged Parents: The Struggles and Rewards of Raising a Child With a
Disability was published in 1997 by  Birch Lane Press/ CarolPublishing
Group, 1-800-447 BOOK(2665). It will be issued in paperback in the Spring of
2000. See also his web site at: http://www.specialfamilies.com

©  Robert Naseef, Ph.D. / Special Families.com

Reprinted with permission

                                 "We each have our own way of living in the world, together we are like a symphony.
                            Some are the melody, some are the rhythm, some are the harmony
                               It all blends together, we are like a symphony, and each part is crucial.
                              We all contribute to the song of life."
                             ...Sondra Williams

                   We might not always agree; but TOGETHER we will make a difference.

                                 "We each have our own way of living in the world, together we are like a symphony.
                            Some are the melody, some are the rhythm, some are the harmony
                               It all blends together, we are like a symphony, and each part is crucial.
                              We all contribute to the song of life."
                             ...Sondra Williams

                   We might not always agree; but TOGETHER we will make a difference.