Vol. 1, No. 2 • Summer 1997

Parenting Children with Special Needs: A Parent's Perspective
by 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.

Our 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.

We 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 deserve.

Susan Valiquette works at Family Support Network of North Carolina.

Copyright � 2000 Jordan Institute for Families