| You Will Dream New Dreams:
Inspiring Personal Stories by Parents of Children with Disabilities
Stanley D. Klein, Ph.D., and Kim Schive. Kensington Books: New
York ( 2001) 278 pp.
Personal
Stories by Parents of Children with Disabilities
By Merri Rosenberg
Part
wannabe Chicken Soup for the Parent of a Disabled Child’s Soul,
part heart-wrenching, gut-twisting narratives that are often too
painful to finish reading, this compilation of mostly first-person
essays by parents of what are euphemistically called ‘special
needs’ children is a sobering reminder of what the other side
of parenting really looks like.
Any mother-to-be who’s stroked her abdomen, daydreaming about
the future for her unborn child, would be deeply unsettled by
many of these stories. Some of the parents were barely in their
twenties, with no sign of any problem during pregnancy, when they
received the news that they had a baby with Down syndrome. Others
have had several children with disabilities, like the family whose
two sons both have the fragile X syndrome. Still others were given
the news about their child’s fate while undergoing routine pre-natal
sonograms.
No matter when the parents found out, nearly all went through
a similar process of grief, mourning the ‘normal’, healthy baby
they had assumed would be their birthright, worrying about the
burdens and problems the disabled child would have to endure and
letting go of
the milestones and events that they had happily anticipated sharing
with a child free of disabilities.
Imagine realizing that your child may never walk, may never talk
to you and may never experience the simple, uncomplicated pleasure
of performing in a school concert or athletic event. Imagine knowing
that a genetic mishap means that your beloved and cherished child
may never reach adulthood, or will experience it through the muffled,
distorted prism of autism.
The parents whose voices are heard here don’t sugarcoat the difficulties.
While they may eventually learn how to manage the hazards of daily
life, deal with unkind or simply annoying friends and relatives
who say and do the wrong thing and come to cherish and celebrate
the experience of parenting a disabled child, very, very few claim
that it’s a carefree blessing. Those whose narratives offer advice,
rather than simply their own story, are careful to encourage readers
to unburden themselves to therapists, sympathetic friends, or
even support networks of other parents whose children are similarly
stricken. These parents give readers permission to be angry, to
grieve, to feel guilty–and to challenge those in the medical or
educational field who are too quick to dismiss their concerns
or rush to a diagnosis.
It’s almost impossible to read this straight through. The accumulated
sorrow of these stories–a young adult stricken blind from her
juvenile diabetes; children suffering from obscure genetic diseases
like Marfan syndrome, cri du chat or Ausperger’s; those who are
autistic or have Down syndrome; others with cerebral palsy–ultimately
challenges the reader to rethink her priorities, and be grateful
for normal, healthy children.
This would be a valuable book for those who deal with special
education children, either as classroom teachers, special education
teachers, therapists or counselors. The parents who shared these
stories are brave; so are their children. Each special needs child
has transformed his or her family. Each family could probably
write an essay like the ones featured here.
And yet each family’s ability to deal with the challenges, burdens,
and, yes, privileges, of having a special child is distinct and
should be honored. #
Education
Update, Inc., P.O. Box 20005, New York, NY 10001.
Tel: (212) 481-5519. Fax: (212) 481-3919.Email: ednews1@aol.com.
All material is copyrighted and may not be printed without express
consent of the publisher. © 2002.
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