"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