As the Project Director for the National Fathers'
Network, I have spent the past ten years crisscrossing the country helping
set up support groups for fathers of children with special needs. I have
visited thirty six states and completed more than 200 trainings. I have
experienced the bitter cold of Maine, the tropical climate of Hawaii, and
the scorching heat of Texas. It has been a grand time, both in terms of
seeing much of this country and the diverse people who inhabit it, but
also in meeting men who share a common experience, endeavoring to be the
best possible dads for their children with disabling conditions or chronic
illness. I have been touched and often moved to tears hearing the stories
these men share with each other. When I reflect on these travels, I find
poignant images and memories full of wonder and delight, all saying something
important about fathers and their desire to be competent, concerned caretakers.
I remember two men who came to the first meeting of a Fathers Group and
were surprised finding each other at such a gathering. With amazement and
some embarrassment they discovered each had a child with a disability --
amazed because they had worked together for the past four years but had
never shared this "secret." I have seen and heard variations
on this story almost everywhere I go. What stands out is the isolation
so many men experience, afraid to share their special world, fearful of
being misunderstood and unwilling to reach out to others for help. The
old male models of manliness -- being in control, self-sufficient, capable
of handling all problems without asking for help -- die slowly. To finally
openly talk about one's child, to know we all have the same fears, angers,
frustrations as well as the joys of personal accomplishment, is an incredibly
powerful experience. I routinely ask men why they come to such meetings.
Often the answer is, "my wife wanted me to," or "I came
because I was told to." When I ask them again at the end of the session
the simple answer is, "I came to share my experiences and feelings
with other men of similar backgrounds." The isolation slips away as
the commonalties become supremely evident.
One way to deal with our pain is to deny we have it. A glib "I'm fine,"
or "everything's great" masks the confusion and concern men often
feel regarding their families and the struggles they are going through.
I think of the man who installed my storm windows. He seemed particularly
angry, and we made little eye contact. Upon completing the job he asked
to use a phone in my office. On the desk was a copy of a book about families
raising children with special needs. With a sudden blurt he asked me, "What
do you know about disabled kids?" Upon telling him about my job, he
unleashed twenty minutes of unbridled rage about the past fifteen months
of his life since his special needs child was born. He complained bitterly
about the medical costs, the stresses he was experiencing with his wife,
and the loss of a job. It was evident this was the first time he had openly
shared these thoughts with anyone else. What was also evident behind the
frustration and anger was the immense love and concern he felt for his
child. Not daring to interrupt, I let him share his stories, and when through,
I told him about groups of men who meet to share similar feelings and help
support each other through their struggles. He was dumfounded such groups
existed. Like so many other men, he needed a place to vent his frustrations,
share his fears and joys and reach out for assistance. With men so often
what is outwardly shown is not what is going on inside; men need safe places
to be accepted and understood.
I am continually struck by how a group of men from disparate backgrounds
can immediately connect with each other. In a fathers' group one finds
mechanics and computer salesmen, loggers and professors, servicemen and
engineers. I have often cringed a bit when first starting a session, quietly
asking myself how these men will ever find something
in common. I particularly remember one man who was absolutely silent the
entire two hour session; he seemed utterly detached from what was going
on, and no amount of coaxing could elicit a comment. He seemed supremely
bored by what was happening. As we were about to finish he finally looked
up and began to talk about his child, haltingly at first but increasingly
confident as he went on. He made it clear the session had been very special
to him and that he intended to return the next time. Obviously I had misjudged
him; I could only remark later to the group leaders how much camaraderie
among the men was built in such a short period of time, and that we all
have our own unique ways of sharing who we are. While the men seem so very
different, in reality they are so very much alike. Underneath the tough
exterior is a tenderness wanting to come out and be acknowledged. Their
children is the glue that bonds them together.
I would be remiss not to comment about the laughter, the good humor and
enjoyment the men bring to discussions regarding their children. The first
steps at age five, the mastering of a feeding session or a diaper change,
the joy in taking a son swimming on a Saturday afternoon, the relief of
making it through a child's heart surgery, and the chance to take a daughter
on a camping trip -- these are the stories that make our times together
such a pleasure. The playful kidding with each other, the earthiness of
discussing who had the last vasectomy, the exchanging of cigars with the
birth of a child, and the preparation of a spaghetti dinner for the wives
-- all are done with great gusto; rarely have I left a session feeling
down or overwhelmed by sadness. For dads of special needs children, success
comes in different ways--slow and measured, hopeful after what had seemed
so hopeless. For most dads the child ultimately becomes a gift of love,
a teacher. As one father proclaimed, "I feel proud of her [his daughter]
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."
There is much written today about fathers being "derelict" in
their fatherly responsibilities. These men have taught me to look past
such stereotypes, and to see men working with great diligence to be superb
fathers -- caretakers filled with compassion and sensitivity. Starting
with this issue we will be featuring a new column, "Fathers' Voices." (Now on-line at the Fathers Network site)
It will focus on a fathers' experience raising a child with special needs.
We encourage all men to make their thoughts known. What has the journey
been like for you? What have you learned about yourself in the process?
What has your child taught you and your family?