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Parents are experts on family life.

Parents Are Experts on Family Life

The new regulations for programs for infants and toddlers represent a landmark for families. The regulations pay more attention to the rights and responsibilities of parents than any previous legislation involving children with disabilities. Similarly, the process of the development of these regulations involved more systematic input from parents themselves than ever before.

By explicitly empowering parents, the regulations acknowledge the expertise of parents in reference to themselves and their children and give parents a new sense of control of the destiny of themselves and their loved ones. What a dramatic contrast to the past when parents had to demean themselves and their children as they begged for any services! Instead, the regulations speak loudly and clearly to parents and professionals: "The family is in charge!"

It is important that parents maintain an active role to ensure that the intent of these regulations is fulfilled. A key ingredient of the regulations is the development of a Family Service Plan. The goal of a family service plan should be the matching up of programs with the style and strengths of the family. Unfortunately, few professionals have had training and education about families. Instead their "understanding" of families is largely based on their limited personal experiences and beliefs rather than on careful study and research.

However, it is this "understanding" which is likely to be reflected in the recommendations professionals make in reference to family needs. Even with openminded professionals, there is likely to be considerable pressure on parents to accept the plan. Families will then have to decide whether the plan makes ense and meets the needs of their child and themselves. We believe they should trust their own expertise and judgment.

Because of this legislation, there will be new training programs to help parents and professionals assess a family's functioning and strengths, and to learn how to interact together. Parents must learn to ensure that a recommended program best fits the needs of their children and themselves. A critical question that parents must ask when they are working with professionals is, "How is the information being requested and the program being offered going to help my child?" The same question must be applied to their own evaluation of professionals: "How will my understanding of the way this professional works help me to get the best service for my child?"

From the first issue of EXCEPTIONAL PARENT, we have stated that parents are experts in understanding their children. Although parents can sometimes feel helpless, we know that parents are experts on the way their own families live, love and work together. During these years, we have had the privilege to meet many parents who have considerable expertise and knowledge about the way systems deliver services to children and families, the role of each of the various specialists involved, and in developing new programs which promote the growth of children with disabilities and their families.

The success of all programs for children with disabilities, not only programs for infants and toddlers, requires that parents serve as teachers--not only of their own children but of all the professionals ready to serve. Only parents can educate professionals about the day to day lives of their children and family.

The task that parents have is not an easy one, even when professionals welcome them as partners on the team. New parents of a child with a disability are likely to feel overwhelmed by the idea that they can teach experienced professionals. Yet, with the encouragement and support of professionals who believe in them and the assistance of experienced parents, new parents will be able to have the confidence to take on this responsibility in an effective way. We also recognize that many professionals are unaccustomed to accepting parents as partners in decision-making and few have had any experience in this new kind of partnership.

We believe these difficulties can be resolved when parents and professionals both have a commitment to promoting the growth and development of children with disabilities and families. Experienced and knowledgeable parents must help us all; new parents, less experienced parents, and professionals. Parents have met this challenge in the past and will continue to meet this challenge in the future.
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Author:Schleifer, Maxwell J.; Klein, Stanley D.
Publication:The Exceptional Parent
Article Type:editorial
Date:Sep 1, 1989
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