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By Phyllis Hanlon
As a scholar and as
a father, Bob Naseef '70 reaches out to other parents of children with special
needs.  College
students
of the '60s had noble ideas about changing the world; they all had a plan to
make life better for future generations. Robert A. Naseef '70 was no different.
As he journeyed through life, however, he was to experience events that would
change him instead. In 1982 his son, Tariq, was diagnosed
with "pervasive developmental delay," a broad term for autism. The ensuing years
brought sleepless nights, innumerable doctors' visits, constant worry and a divorce,
as well as increased self-awareness, a doctoral degree, remarriage and the birth
of three daughters. The changes that Naseef underwent are chronicled as a combination
self-help/academic guide in his first book, Special Children, Challenged Parents. Based
on his personal experiences, Naseef attempts to educate and alter the thinking
of other parents with
disabled children.
Naseef's penchant for helping people was obvious long before the birth of his
son. After receiving his degree from Temple University in 1971, he began teaching
high school and college English in Pennsylvania. Taking his instruction beyond
the classroom, he coordinated a reading literacy program for high school students
and taught remedial reading at the college level. His involvement with students
eventually
led to a position as the director of a college counseling center.
While he was involved in these special outreach projects,
life on the personal front took an unexpected twist. His
son, Tariq, born healthy in 1979, underwent dramatic changes at the age of
18 months
after having an ear infection. This normally playful and
outgoing child became withdrawn and silent and refused to make eye contact
with others.
Many months of testing finally led to the diagnosis of autism.
Like most parents whose children are diagnosed with a severe illness, Naseef
reacted with shock and disbelief. Through psychotherapy and research he learned
that this reaction is typical and is triggered by lost dreams. Like many parents,
upon receiving the news that he and his wife were expecting, Naseef had begun
to imagine all kinds
of activities he would share with his child -playing baseball, canoeing, taking
hikes in the woods, and having deep discussions. "When a child is born with a
disability or becomes disabled, what has been lost is the dream,
not the child," he said. He learned that a parent must accept that reality before
moving on to recovery and dealing with the disability.
In his book Naseef narrates the difficulties he experienced reaching the acceptance
level and compares them to the five stages of grief as first conceptualized by
Elisabeth Kübler-Ross. "A lot of people go through this grieving process.
The parent has lost what he had expected to gain. Once those expectations can
be released, a parent can accept the child as he or she is. If not, the parent
will
remain chronically upset," he said. Parents whose child has a disability often
feel that they have experienced a death. "Expectations have died," Naseef states, "not
the child. Acceptance helps the parent to love the
child they have." Naseef has found that by remaking or deferring your dreams
both you and your child can begin to enjoy a comfortable existence together.
Slowly an evolution began taking place in
Naseef's life. All of the avenues he had explored that might possibly lead to
a cure were dead ends. As he learned more about the illness, he realized that
he would never be able to change Tariq; his acceptance of the situation prompted
changes within himself. If he expected to live a relatively normal life that
included Tariq, his wife, daughters and his own personal career aspirations,
then he would have to adapt. "There was always a way to figure out how to accomplish
things. Education was important to me so I took a sabbatical to write my thesis
about how families cope successfully with having a child with special needs.
As soon as the bus would come in the morning for Tariq, I would begin to write.
I had to use every opportunity
I could."
Tariq suffers from what Naseef calls an "invisible
disability." Children with Attention Deficit-Hyperactive Disorder (ADHD), autism
and other mental illnesses may appear outwardly normal. "What your eyes tell
you, however, may not always be true," Naseef said. Parents have a more difficult
time adjusting to the reality that their child is disabled when he or she suffers
from one of these imperceptible handicaps. "It is an elusive condition. More
people hold onto hope when, in fact, there may
be none," he said.
Naseef explains that visible disabilities on the other
hand are more readily accepted. A child who is blind, has
a physical disability, or is affected by Down's Syndrome or other obvious conditions
induces different expectations. Every day parents are forced
to face reality and the fact that life for these children will be altered in
some way.
Tariq's autism diagnosis created an entirely different lifestyle for Naseef.
The child required continuous watching
since his actions were unpredictable. "My biggest fear was that he would wander
out of the house and get hurt," Naseef said. Even within the confines of the
home, Tariq could manage to upset the household if left unattended for any
length of time.
Juggling work, a floundering marriage and managing an unpredictable child is
unimaginable to Naseef at this point
in his life. "In retrospect it's hard to conceive how I managed life when Tariq
was little. For seven years I went with little sleep. Fortunately I worked in
a junior college at the time and had a very understanding boss. If Tariq had
been up most of the night, I could grab a couple of hours sleep before reporting
to work."
Some parents find solace in their faith or belief in a higher power. Although
not religious in the traditional sense himself, Naseef addresses the issue of
faith in his book. He finds that parents all have individual backgrounds and
upbringings. Their perspectives on life will affect the way they deal with the
situation. Naseef finds
that many parents "wrestle with the idea of religion." A situation like this
can sometimes cause a religious crisis. Naseef often recommends the
book When Bad Things Happen to Good People by Harold Kushner as
a tool for parents to help deal with their grief. He rereads the book himself
every
so often "to remind himself that God is just." The book attempts to explain the
unfairness and random distribution of suffering. "People tend to think that good
things happen to good people and bad things happen
to bad people," Naseef said. "In some cases, though, faith may help parents
get through the tough times and reconcile why this has happened as part
of life.
"A higher power is part of what helps you
accept in some sense the 'spiritual force' that these children embody. We are
compelled to look inside ourselves and evaluate our own moral principles.
"Society is becoming more inclusive of all people with disabilities. It seems
to be making us all better people, more civilized. As a whole we are learning
to honor that everyone is somebody."
In 1990-91, Naseef shared his acquired knowledge and educational background by
designing a program that would foster better parent-professional collaboration
for the New Jersey Department of Education. Years of dealing with medical experts
and state agencies as both a parent and counseling professional had given him
a useful dual perspective on
advocating for the families of children with disabilities. "Sometimes professionals
would tell me infuriating things. I knew they were inaccurate. Someone with no
knowledge in this area could easily be misled. You need to get all the information
you can in order to help your child," Naseef said.
Naseef started workshops and training sessions for couples,
siblings and especially for fathers of children with special
needs, a population he felt was under-served. With slight hesitation he initiated
special sessions exclusively for males where he hoped the
men
would "open up and express their feelings," Naseef said. "Fathers have such an
enduring impact on the lives of their children and play such a key role in their
sense of identity." He wanted to promote expression of feeling so that these
fathers could perform their familial duties more effectively. His reluctance
and fear of paternal rejection were erased as the concept of male-only therapy
groups took hold and became popular
and well attended.
His own personal transformation became a driving force that led to the creation
of his book. "I had something to say. My desire was to write a book that would
be respected and long-lasting. During the seven years that it took to write this
book I was learning the whole time. I already had the background knowledge and
then blended it with all that I discovered along the way. If I rewrote the book
today there would be different information, as well as many more resources that
I would include.
There is always something new to learn."
Publication of the book brought unexpected acclaim from
experts in the scholastic
world. A review by Jed Yalof published
in The Independent Practitioner, a bulletin issued by the American
Psychological Association, praised Naseef for "straddl[ing] that fine line between popular
psychology and academic scholarship." Naseef has been pleasantly surprised at
the accolades that his colleagues have given the book. This positive reaction
reassures him that he has indeed accomplished the mission of a worthwhile self-help
and scholarly resource complete in one volume.
His wife, Cindy, has lent tremendous support throughout all of the years she
has known Naseef. "She helps me be more
grounded. She is very patient and understanding," he said. Cindy is stepmother
to his daughter Antoinette and mother to Kara and Zoë. The couple shares
professional interests that are different but broadly related. They are partners
in Alternative Choices, a general psychology practice established in 1992 that
specializes in counseling parents who have children with special
needs.
In addition to conducting workshops and seminars for
schools, parent organizations, and human service agencies, Naseef also serves
on the volunteer Board of Directors
for Autistic Children in Philadelphia. In the near future he plans to moderate
a chat room for parents of children with disabilities. He has also been writing
an online column for the last
six months for Special Child Magazine at www.specialchild.com. A
second nonfiction book is in the works before Naseef attempts a novel
based on his experiences.
In his presentations to various organizations across the country, Naseef tells
the story of one father in his counseling group who has an autistic child. The
man himself is afflicted with cerebral
palsy. This father always claims that "my kid is not a child of a lesser
god." Naseef's audiences are moved by this thought; they want to feel that kind
of love. Naseef fosters the idea that each child is intrinsically good and deserves
a love that is not achievement-based. "In this material world that type of unconditional
love is not so naturally driven and is
in short supply," he said.
"I have to admit that Tariq has been an inspiration to
me, although not in the way I thought a son would be. He should be the
one achieving success and I should be the one cheering
him on," Naseef said. He views his life in the Greek sense-making meaning out
of tragedy. Had it not been for Tariq, Naseef thinks he would have been the annoying
parent in the stands screaming at the baseball coach to put his son in the game.
But changing what he could, accepting what he could not and deriving wisdom from
the experience has brought him serenity. The changes that Naseef anticipated
some 28 years ago have materialized,
but much differently than he ever dreamed. "I have had a charmed existence. I
wrote a book. I have a son who is nonverbal and has taught me about the meaning
of love. Life is truly bittersweet."
Phyllis Hanlon is a free-lance journalist from Charlton,
Mass.
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