Printer Friendly

Educating parents.

"Mom, I've had enough of you!"

That statement was uttered by my 28-year-old daughter who has autism. I was driving her back to the new home she shares with three other young women. Although this comment might have been offensive to most mothers, it made me feel terrific.

My daughter's comment expressed the full realization of the goal that I as her mother have had for her: independence in the fullest meaning of the term. And it is no small feat that she was able to verbalize her feelings.

My daughter, Mary Ann, has benefitted from many wonderful advances in services for children with disabilities that have occurred in the past 20 years. These advances include federal court precedents, federal and state special education laws, Section 504 and the Americans with Disabilities Act.

Twenty-four years ago, when it was time to think about school for Mary Ann, I called the local school department to inquire about a program for her. The superintendent of schools replied, "We have not given any thought to children with autism yet. Next year we might start a program for children with mental retardation." This response ended the school system's responsibility for Mary Ann's education -- legally! We could privately pay for whatever education or therapy we could afford, but we could forget about sending Mary Ann to a public school.

Later that year we moved to another state, and by then I knew better than to call the local school department. The state, however, did have a limited program for funding private school placement for children with autism -- the only option. Of course, the state tuition payments had to be supplemented by parental contribution and by constant fund raising.

When we moved to Massachusetts in 1971, things were beginning to change. Perhaps even more importantly, I was beginning to change. By now, Mary Ann's younger brother Fred was in school. I recognized that there was no good reason why he could go to public school and she could not. Again, there was a state-funded program for children with autism, public school.

In the ensuing 20 years, two events occurred that have special meaning for me. Both events have had a major impact on my daughter's growth and education as well as on the experiences of thousands of other children with disabilities and their families. First was the enactment in 1972 of Massachusetts' state special education law, known as Chapter 766. This law constituted a major step down the road to the inclusion of children with disabilities within the "regular" school, within "regular" class-rooms, for it ended categorical labeling as the basis for education.

My role was that of an enthusiastic but stubborn parent determined to see this far-reaching legislation succeed. Betty Joel, a social worker, and I co-rounded the Massachusetts Coalition for Special Education. This group of 42 disability and civic organizations worked together for enactment of the law and continued to monitor preparations for implementation.

Other parent leaders and I recognized that with this new law, parents needed new information and skills. Participating in an IEP meeting is a lot different from running a bake sale to support a little private school.

From the larger coalition, we pulled out organizations that are statewide disability groups run by parents and formed the Federation for Children with Special Needs, the second most important event to me. Its mission was, and still is, to offer parents of children with all disabilities the information and skill training they need to effectively participate in their children's education.

In 1975, the U.S. Office of Education funded the Federation to operate a pilot Parent Information Center (PIC). After the successful implementation of the pilot, the Office of Education funded four other PICs in addition to the Federation: Chicago, Ill.; Cincinnati, Ohio; South Bend, Ind.; and Concord, N.H.

Each PIC was operated by a coalition of organizations representing many disabilities, with a board composed primarily of parents of children with disabilities. We published newsletters, talked with parents on the phone, and sometimes accompanied parents to IEP meetings. Gradually, we learned together that we would never have enough resources to help parents on an individual basis. We began to experiment with group endeavors, such as training workshops and annual conferences.

We soon realized that parents everywhere in the country deserved to have access to similar services. These services include training and information for parents provided by parents who shared the experiences of isolation, frustration, and hard-won knowledge. Gradually, a few more parent centers were added in Virginia, Minnesota, Georgia, Washington, California and even one in Puerto Rico.

In 1983, I was invited by the Senate Subcommittee on the Handicapped to help draft a federal law that would establish a national program of Parent Training and Information (PTI) centers. Since the enactment of this law, the federal program has steadily grown. There are now 60 PTI projects, with at least one in every state and Puerto Rico.

Assisting our children with disabilities to grow into mature, independent, productive adults who are a natural part of their community is the goal of parents helping each other through the work of the PTI centers. Experienced parents conduct workshops on the IEP process, educational assessment, communication, and other topics important to parents who want to participate effectively in the education of their children with disabilities.

With the encouragement of the House Subcommittee on Select Education, the PTI program is now expanding to include a component of experimental projects run by grass-roots parent groups in dense urban areas as well as in remote rural sections of the United States. At the same time, all the parent centers are working hard to serve the variety of parents in their states.

An important aspect of the PTI centers is the role of the staff and volunteers, most of whom are parents of children with disabilities themselves, as role models for each other and for the parents they are serving. For example, when a parent on a PTI staff insists that her daughter, who has multiple disabilities, be invited to participate in all the activities at her local high school, the parents she works with are encouraged make similar moves.

Parents in the PTI centers must keep learning more and more skills. Then they can help other parents use the laws to secure for their children an individually-appropriate, inclusive education. Because of this, their children can grow into independent adults who can think, if not say, "Mom, I've had enough of you." Martha Ziegler is the founder and executive director of the Federation for Children with Special Needs, a Massachusetts coalition of organizations of parents of children with disabilities. She is director of the Technical Assistance for Parent Programs Project and director of the parent component of the National Early Childhood Technical Assistance Project. Ziegler holds a bachelor's degree from Franklin College, Ind., and a master's from University of Rochester, N.Y. Ziegler lives in Lexington, Mass., and has two grown children, one who has autism.
COPYRIGHT 1992 EP Global Communications, Inc.
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1992 Gale, Cengage Learning. All rights reserved.

Article Details
Printer friendly Cite/link Email Feedback
Author:Ziegler, Martha
Publication:The Exceptional Parent
Date:Jun 1, 1992
Previous Article:Test child, real child.
Next Article:A star is born?

Related Articles
Calling all parents.
No Apologies for Ritalin.
No Apologies for Ritalin.
Parental notification laws for teens health gets mixed reviews among U.S. parents.
Focus on child abuse.

Terms of use | Copyright © 2017 Farlex, Inc. | Feedback | For webmasters