Vol. 1, No. 2 Summer 1997
Children with Special Needs: A Parent's Perspective
Susan A. Valiquette
IFSP, IEP, ITP, DEC, PL 94-142, PL 99-457, IDEA: How is a parent supposed
to keep this alphabet soup straight?
When we are first told that our child has a disability, most of us
want to run and hide and just hold our babies, but because of their
special needs, we can't. Instead of just being "Mom" and "Dad,"
we have to become social workers, case managers, and caregivers. The
baby's brothers and sisters become "siblings"--a word you
seldom hear unless it's related to a child with special needs. We have
to have our babies evaluated, write an "Individualized Family Service
Plan" and then we have to implement it. We have strangers coming
into our homes to show us how to best parent our children. And we do
it all, not because it is our choice, but because we have no choice.
We want to do what is best for our child and we need help and guidance.
Giving birth to a child with a disability is no different than giving
birth to a child without a disability. Neither one comes with an owner's
manual. Parenting is not an innate skill. It's complicated enough having
a healthy child, but having a child with special needs means that our
needs are special, too. As parents we just want to do the right thing
by our children.
son was born almost 21 years ago. He was rushed to a hospital 100
miles away for immediate surgery. Later he was diagnosed with Down's
Syndrome. And so began our long journey through a system that is
not really designed for the everyday person. In the end he had two
dozen more surgeries. We had to learn how to talk to doctors, nurses,
social workers, and other service providers as well as friends and
family about our child.
learned early on that we had to let go of the notion that the system
would work by itself, that doctors would make the right decisions, that
the education system would do the right thing, or that society would
open its arms to our baby. It's not that any of these systems are particularly
cold-hearted, it's more that they are so overwhelmed by people's needs
that they can't do what they need to do and advocate for children at
the same time. That became our job.
We had to learn about Public Law 94-142, which says our child has
the right to get services that will help him later in life; we had to
talk to legislators, educators, and medical personnel. Basically, we
had to become experts in disability rights. As our child aged and his
needs changed, so did our level of expertise.
As parents, all of us have to become proficient at finding information
that will help our children. We have to become detectives as well as
continue our role as care providers. This is often an overwhelming responsibility
for families. We look to other families for support and assistance in
deciding which path to follow. Parent support programs often become
our social outlet. The information that can be found in one evening
can save days of research.
Service providers can be excellent resources. We talk about working
as a team, but oftentimes it is just talk--talk. But when both parent
and professional work together--really understanding each other's needs
and strengths--it truly becomes a team. Both parent and professional--be
it a doctor, early interventionist, a teacher, or other serve provider--bring
a level of expertise that we as parents don't have.
But it should never be forgotten that we, the parents, have a level
of expertise that they, the professionals, can never have. We know our
children better than anyone else. We know what feels "right"
for our children, and we will go to the ends of the earth to make sure
our children get the chance to live the peaceful, happy life they so
Susan Valiquette works at Family Support Network of North Carolina.
2000 Jordan Institute for Families