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"Special Children, Challenged Parents:
The Struggles and Rewards of Raising a Child with a Disability"
By Robert A. Naseef, PhD
Birch Lane Press Book, 1997
"There are many lessons on this journey for connection
and support as we are drawn together by our similarities, meeting
through tears and laughter. It takes courage to acknowledge the
hurt or grief and loneliness and to risk being hurt again. But that
risk is necessary to get to the other side of sorrow. Whether we
are related by chance or choice, we must learn to accept and honor
our differences. When we do this, we can divide our sorrow, multiply
our joys, and make connections to support us through a lifetime."
(p.172)
I pulled this quote from the above book because I
felt it really "spoke" to many of our families—especially at
the moment of hearing that our child/children had a genetic disease
or when we experienced a parent's worst nightmare of having to bury
one or more of our children. It really embodies our Network's main
themes of "We are all in this together," "We are not alone," and
that "People truly need people" for ongoing support.
Over the summer I was introduced to this book via
the Internet. The author, Dr. Robert Naseef, a psychologist specializing
in helping families of children with special needs, was offering
support groups like ours an opportunity to review his "labor
of love." And I was truly glad that I took him up on his offer!
You see, Dr. Naseef intimately knows all about grieving
the loss of a dream of a 'perfect' child. His book was inspired
by his own personal experiences with his son, Tariq, who has autism.
Some of you may say that this book may not relate to your own situation
because it's not the same disorder as FODs. If you believe that,
then you'd be the one really missing out on a very powerful expression
of one man's journey, individually and with his family (immediate
and family of origin) and friends and coworkers, of learning to
cope and live with a long-term disorder and coming to grips with
the discrepancy between what he calls the "imagined" and the "real"
child, as well as to learn how to accept and love Tariq for who
he is—his son.
He does an excellent job of interspersing his own
fears and struggles and ongoing process of healing with cases from
his research and clinical practice of working with families with
a chronic illness or a disability. He gives workable parenting strategies
for "getting in tune" with your children and understanding their
temperaments and why they behave the way they do, how to assist
in changing behaviors, as well as creating an environment for promoting
bonding and a positive relationship. Additionally, he also discusses
coming to terms with your child's limitations, depending on the
severity of the disorder. He recognizes that men and women, as well
as children, will respond differently to what is going on within
the family depending on their unique perspective and offers helpful
strategies to understand how each person may express their feelings
of grief, denial, anger, fear, anxiety, guilt, sorrow, and even
joy, in a variety of ways.
He is very honest about how dealing with his son's
autism has taken its toll on him personally and professionally—something
I'm sure we can all relate to at some point in time in our own journeys.
He discussed that it's a real challenge to redefine yourself as
a parent when you learn your child has a disorder, as well as learning
who your child is, and what your relationship with your child may
be, depending on the type of disorder (will they be raised/cared
for at home or is there a need for professional long-term intervention).
No matter what the severity, love can be a very strong
connecting force—even when it appears all hope is lost and
that love possibly cannot be returned from your child because of
a variety of reasons. Often with autism, children appear to be "in
another world" and as Dr. Naseef expresses, it is oftentimes extremely
frustrating trying to reach them the way we as parents hope and
desire to reach them. Yet, on a personal note, I strongly believe
that on some level that we may not understand, that love is connecting.
We may not see it outwardly, but it's there. I imagine that challenge
may be part of all our journeys—learning different ways of
connecting with our child—all of our children—whether
they have a disorder or not.
I highly recommend this book as a resource on facing
the daily challenges of dealing with a chronic disorder. Dr. Naseef
offers a variety of educational resources, as well as support organizations.
Throughout his writings he stresses that connections and support
are vital. We are not islands and by seeking medical, educational,
emotional, physical and spiritual support we are not only helping
ourselves and other parents—we are ultimately helping our children
and our families.
On that point, I will end as I began—with a quote
(p. 153):
"A friend is one to whom one may pour out all the contents of
one's heart, chaff and grain together, knowing that the gentlest
of hands will take and sift it, keep what is worth keeping and with
the breath of kindness blow the rest away."
Deb Lee Gould, Co-Editor
Jan '98 FOD Communication Network Newsletter
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