A Father's Perspective

Rob · A Father's Perspective

Passing this on from another listserv.

A Father's Perspective
Brett Chun, LCSW

In November of 1996, I served on a fathers panel facilitated by Dr.
Thomas Powell, at the Governor's Conference on early intervention in
Los Angeles, California. Participating on the panel in the presence of
approximately one thousand conference participants created a rare
opportunity to communicate to an unusually large body of the
professional community serving families of special needs children. I
decided to relate two areas of my experience as a father. The first
was based upon many interactions I've had with professionals which led
to feeling invisible as a father and family member.

The second subject was motivated by many incidents that I have
experienced in my interactions with and observations of people and how
they relate to disability and difference. For instance, I recently
observed a young mother trying to teach her son, who was a toddler,
how to press an elevator button. In her frustration with his
difficulty in mastering the skill, she impatiently blurted out that he
must be "retarded," trying to motivate him to learn by expressing this
demeaning remark to him. It was a saddening reminder that my child was
"marked" in some stigmatized way.

To observe the transmission of this parent's attitudes to her child
and to witness its passing from one generation to the next stirs a
father's worst fears that the world can not be trusted to deal as
fairly and sensitively with his child as he does, and that there is
less hope for change. These common experiences and far worse, are what
parents encounter (i.e., the social stigma of disability, societal
attitudes of fear, intolerance and prejudice towards individuals with
differences and their families) as they strive to help their children
gain recognition and acceptance beyond the boundaries of the
disability community. As a panel member at the conference I was asked
the following question:

Dr. Thomas Powell: What do you want for your disabled child and what
are your fears?

"There is a history to the question of what it is that I want for my
child. During the diagnostic process, which took months because Amy's
diagnosis (of Down Syndrome) occurred during pregnancy, no
professional had ever asked me what my understanding of my child was,
and that was really an amazing thing to me because in fact, I knew a
lot about my child before she was born."

"And as I began to participate in the parenting experience by
attending meetings and being part of interviews, being involved with
my child, I came to feel like an invisible family member. Most of the
attention was on my wife. Even when I asked questions about my child,
about life experiences of having a child with special needs, there
were people who would turn to my wife and talk to her and ignore me.
That is not an uncommon occurrence, I think, in the health care
community. I don't mean that as a criticism but an observation on my
part."

"I realized that my presence in these meetings confronted peoples'
assumptive worlds about me and I had to struggle with finding a way to
establish a presence with them, to make myself a visible member of my
family. That was not an easy thing to do during this time of turmoil
and uncertainty. I think that if I were a different kind of a father I
would've withdrawn from that situation, gone into myself and cut
myself off not only from a very important aspect of my identity as a
father but an equally important part of the fragile relationship that
was forming with my child."

"So here I am today. I have an ocean of professionals to talk to about
who Amy is and it is a wonderful thing, and it is the first time ever
that I will have told a professional person what I have come to feel
and know and understand her to be. I want to tell you how she
ornaments my life--she is an incredibly remarkable individual."

"To my eye, she is uniquely and unusually beautiful. She has dark,
brown, delicate, silky hair that is very soft to the touch. She has a
smile and a laughter that warms my heart and the hearts of others who
get to know her. She has the extraordinary capacity for forgiveness.
She never holds resentments or anger towards me and in my moments of
frustration as a parent, she helps remind me of where I need to be in
order to be a good parent, or at least, a good enough parent."

"Recently, it was pointed out to me that Amy does not distinguish
between peoples' skin color or race. She doesn't see differences in
people and at the age of nine, she is where I would like to be at the
age of forty-five, and I am not there yet. She sees people not in
terms of difference but in terms of friendship, love and affection,
and she can establish that very quickly with people who care to get to
know her. If you befriend her you are a friend for life."

"There is no child more capable of trust in the world. She is a bit of
a management problem at school. People are constantly concerned that
she will wander away--she does not fear danger. But, I like to think
of her as being immensely trustful and vulnerable in the world and I
think that is a real strength and tremendous offering to us. Her love,
compassion and kindness is unremitting towards people, but especially
towards animals. And when I watch her interact with animals, I am
reminded of my potential for compassion and kindness, and I follow her
lead in that regard."

"And lastly, what Amy has taught me is that everybody in my family
needs to feel unique and special. And everybody in my community of
friends and professionals, the people that I work with, also need to
feel embraced by a sense of community and support. And that's who Amy
is, and that's what I want you to know about her because my fear is,
people will only see her disability, and there is much more to her
than that."

In sharing my experiences, it is my hope to reach out to professionals
who work with children and their parents and to broaden their
awareness to include fathers when they formulate early intervention
services to families. Fathers represent a potentially valuable and
frequently untapped resource within the family. They bring their own
style of nurturing to the parent/child relationship; one that adds
diversity and richness to the child's emotional, social, and physical
development. Failing to include fathers in family oriented services
risks limiting their participation and relegating them to a role
secondary in importance in the lives of their children.

Often fathers wrestle with grief, isolation, fear and loneliness in
their private worlds. Our patient efforts and commitment to succeed in
finding ways to foster positive working relationships with them will
help prevent many Fathers emotional withdrawal from the family.
Fathers will thus be able to take on their portion of the care and
responsibility for the disabled child which would otherwise fall upon
other family members. The entire family will benefit. Most
importantly, fathers will be able to share in the rewards of their
special relationship with their children.

What makes a father's relationship with his disabled child special?
There are many facets, here are some examples: In the many years that
Amy has spent in full inclusion settings alongside other children
(without disabilities), learning, growing and playing together, the
number of lasting peer friendships she has formed has been
astonishingly few--it seems that the older the disabled child grows,
the more distant he becomes from the mainstream. Despite our family's
efforts to stave this off, Amy's gradual isolation from typical
children is a telling reminder of the attitudinal barriers (most often
silent and unseen) which prevent her from being a part of life; a
deeply disappointing and common experience for parents and their
special needs children.

To make the best of a situation, some parents hope that the rest of
the world will someday "catch up" in their understanding of disability
and difference and accept their children. I have tried to communicate
something about what it is that I have come to understand about Amy;
the learning, the meaning and value that she holds for me and which
has served to form a powerful bond of devotion to her.

I communicate this understanding because it is my hope that I might
inspire others to see that although Amy has needs which require our
time, attention and resources, (to some this constitutes a burden),
she too gives to us, and she does this freely, generously and without
expectation. Her "gift" of humanity, her gentle spirit and enthusiasm
for living offers a community the chance to see beyond the "outer
wrapper" of disability to the person within. She and children like her
provide us opportunities to realize that there are dimensions to the
human experience that transcend our beliefs about gender, race,
intelligence or physical perfection. My hope is that we can achieve
this for ourselves and for our children--it makes for a healthier and
enlightened community. My fear is that we may not.

Brett Chun
Berkeley, CA

http://www.fathersnetwork.org
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