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I'm not done yet!

These words ring in my ears and bring tears to my eyes. My 22-year-old daughter, Jane, said them as she concluded her speech to her graduating class on June 12, 1992. Although she spoke about particular people, her words encompassed thousands of parents who share the joy of raising, living with and learning from children, adolescents and adults with disabilities.

Jane's graduation was one of the most memorable events of my life. It brought back thoughts of the changes that we survived and enjoyed together. The future has never been brighter.

I was introduced to the field of disability when Jane was born. It took a period of time before I could even admit that she had a disability. It was two years before l came back to life after the dark and lonely days following the diagnosis. But Jane and l were lucky. We were living in Omaha, Neb., which had already begun to provide services to support families coping with the stress, fatigue and health issues, as well as the all-around impact of disability.

In 1968, Omaha came alive to the issues of disability because of an expose of the state institution for people with disabilities. Both public outrage and the brilliant leadership of parents and professionals led to a community-based system of services. These programs were started by the Greater Omaha Association for Retarded Citizens (ARC) and the ARC of Nebraska.

When I look back, I am so grateful that Jane was born in a city where so many changes had taken place prior to her birth. Although I did not realize it at the time, these were the first signs of important themes that were to repeat themselves throughout the country.

The collaboration of parents and professionals led to a dramatic and positive change for people with disabilities and their families. The recognition and acceptance by professionals of the caring, skills, knowledge, energy and tenacity parents bring to supporting their children makes all things possible. Without such trust and collaboration, no law can work, no treatment plan can succeed... no one wins.

My development as a parent/professional was largely due to the people with whom I worked -- for Jane and others -- all those years ago. Professionals such as Shirley Dean, Dr. Wolf Wolfensburger and Robert Perske all contributed dramatically to my life as well as to Jane's. They collaborated with parents like Fran Porter to help fuel a revolution that empowers parents to help themselves and each other. They developed what is now known as the "parentto-parent" movement.

The Pilot Parent Program of the Greater Omaha ARC was born in 1971. Based on the beliefs of Porter, with the encouragement and co-leadership of Dean and the support of Wolfensburger, the program was conceived, developed and routinized.

In the ensuing years, hundreds of parents were helped in Omaha. Numerous programs were established based on the success of the Omaha model. Since then, the parent-to-parent movement has become a national phenomenon.

During this time another phenomenal "parent development" was evolving. As a result of the leadership of Martha Ziegler and her compatriots in Boston and other parent leaders working with the U.S. Department of Education, the Parent Training and Information (PTI) Centers began serving parents in five cities in 1977. The Technical Assistance for Parent Programs (TAPP) provides technical support and advice for the 67 funded centers that are now operating nationwide. These centers serve 600,000 parents.

The whole thrust of the PTI movement is based, just as the parent-to-parent programs, on the belief that one parent can share his or her experience, strength and hope for the future. The PTI also began to teach parents about the rights their children had to a free, appropriate education and other "legal" matters as well as how to effectively advocate for their children. Parents were not only interacting with each other, but with service systems such as special education and others. A quiet revolution had occurred. Parents were empowered.

Another one of my early memories was the passage of LB 403, the Nebraska Special Education Law. It was passed in 1974 as a result of the efforts of many parents led by a dedicated legislator who understood the issues. Again, the collaboration of professionals and parents led to positive change for people with disabilities.

And life goes on in Omaha and in many other places in the U.S. and all over the world. Change even affected me as well. On September 14, 1989, Sean Andrew Smith, at the age of four months, entered my life. He was delivered by the Social Service staff from Illinois to Omaha to meet his new parents, my oldest son, Mark, and his wife, Gail. The following day, Sean's special education teacher arrived from the Omaha Public Schools to begin the in-home support program for him. To follow Sean's progress and that of his parents during these past three years has been a total joy for this overly proud grandmother.

I've learned a great deal from my grandson. His progress has been fantastic. Observing the acceptance that he receives is wonderful. Granted, his family and extended family make up a great cheering section. It is still gratifying to see the opening of the community and the "no-big-deal" attitude of teachers, day-care personnel, neighbors, church members and the average person on the street.

Shortly after Sean was adopted, Mark called his youngest sister, Jane, and asked her to stand as godmother for Sean. Jane said that she would teach Sean everything he needs to know about Jesus. There were many moist eyes that day at Holy Trinity Church when Jane and her brother, Matthew, stood as godparents for Sean. The entire family traveled to Washington to attend the event.

Who would believe that all of my family would join together to celebrate the baptism of this young child at Holy Trinity Church in Georgetown, Washington, D.C.? And who would believe that Jane Smith, Sean's aunt, would stand as his godmother? Average stuff? I don't think so.

As Jane and Sean went through his baptism, it struck me that both of these young people were about to embark on new beginnings. Sean is starting to experience all that life has to offer, especially with the school years ahead of him. Jane is now embarking on her life in the larger community after "school" is over.

Neither of the worlds that lie ahead for Sean and Jane resembles the world that Jane entered 22 years ago. The unflagging efforts of parents and professionals alike have made this a better world. We will leave the world better than we found it ... and we're not done yell

Patricia Smith is the Executive Director of the National Parent Network on Disabilities in Alexandria, Va. Smith was the former Acting Assistant and Deputy Assistant Secretary in the Office of Special Education and Rehabilitation Services in the U.S. Department of Education. She also acted as the Deputy Director of the National Information Center on Children and Youth with Disabilities. Smith has seven adult children, the youngest of whom has multiple disabilities. She also has a new member of her family, an adopted grandson, who has Down syndrome.
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Title Annotation:Family Hall of Fame; memories of raising a handicapped child
Author:Smith, Patricia McGill
Publication:The Exceptional Parent
Date:Sep 1, 1992
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