Developmental Disabilities Leadership Forum: Leadership Perspectives in Developmental Disability: An on-line Journal for Consumers, Professionals, Family and Friends
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Volume 1 , Issue 3 Date: Spring, 2001 Topic: Community Membership

Mother and Daughter
Struggles and Successes
(Continuing to Learn and Grow)

by Martha Ziegler

For one year after her diagnosis of autism, Mary Ann was able to attend a "regular" preschool where she was the only child with a disability. When we moved from Norwalk, Connecticut to Huntington, Long Island, however, Mary Ann attended three successive special schools for children with autism; this was during a three-year period when Mary Ann was five to seven years old. Except for one preschool program funded by a federal grant, we paid privately for her schooling with the exception of public funding for her transportation. During this time, Mary Ann's schools were mostly mediocre and she sometimes spent more time on a banged-up special bus than in school. A fortunate thing, however, was that Mary Ann received excellent services from a wonderful speech and language specialist who came to our home for an hour each week to work with her. Up to age seven and a half public schools had absolutely no role or responsibility for Mary Annís education. Had we stayed in Huntington, she would have had to go to a special school located in a former warehouse, in the next county, with one hundred fifty other children with autism.

Instead, in 1971, we moved from Huntington to Lexington, Massachusetts. Here we learned about real estate taxes, the facts of life about the financing of public education. At this time there was still no legal mandate to educate children with disabilities, but my husband and I asked ourselves, "If these enormous property taxes are necessary to educate Fred (Mary Annís brother) why are they not paying to educate Mary Ann?Ē That summer we made a decision to send her to public school. I took her to the special education director in Lexington and said, "Here she is. She's yours."

Mary Ann attended a series of special classes throughout elementary school, in three different locations. Only once, by accident, was one of these classes located in her neighborhood school. I assumed that this practice of moving special education classes from one school building to another every year had ended long ago, but was astounded to find the custom alive and well until recently in Cambridge, where I now live. I have learned from my friend and colleague, Janet Vohs, the importance of "belonging"; physical inclusion is not enough for our children with disabilities. They must experience a sense of "belonging" to a community, whether the community is a neighborhood school, church, or part of a city or town. As parents and professionals, we have an obligation to do whatever is necessary to foster that experience. Moving students from one elementary school in town to another doesnít give much opportunity for community building.

Finally, in junior high school, a superb special education teacher recommended that Mary Ann be included, "mainstreamed," in regular classes. Those three years were by far the best of Mary Ann's education, and she recalls them fondly. Because her new friends were learning Spanish, she wanted to learn it too. After a little experimentation, she took the Spanish classes along with the other children and flourished, continuing Spanish for about five years total. She sang in the chorus, learned typing, excelled in art, and participated as much as she could in all the academic classes. Success at last, but of course our struggles were not over.

Mary Ann has always hated the "special" yellow buses and so has always preferred to walk to school no matter what the distance. For her, walking to high school was an important step in community participation, including some of the hazards of the community as well as the benefits. I thought long and hard about ways to teach her safety and the necessary precautions. I could practice crossing streets with her, but I could not practice dealing with strangers; the word "stranger" was way too abstract for her to understand at age sixteen. Finally it hit me! As with so many things with Mary Ann, do it backwards, in other words from her point of view rather than mine. I said to her, "When you are walking to school, you can only get in these cars: Mommy's, Daddy's, or Mrs. Calvin's (a friendís mother). Do not get in any other cars.Ē No problem, it worked.

In high school Mary Ann continued to sing in the chorus as she had in junior high. She added singing in a smaller girls' ensemble as well. Singing in the chorus had an unexpected advantage for participation in the community. What did not occur to me at the time was the fact that by participating as a student Mary Ann was learning "chorus behavior." Eventually, as an adult she joined the choir in a local church in Lexington where she fit right in and was warmly welcomed as a badly needed soprano. An added attraction of this particular church is its location, in the center of town. Mary Ann can walk to it.

Unfortunately, when we first moved to Lexington, we bought the wrong house. Looking at it on a weekend, we did not realize that the street was a commutersí short cut and we also did not realize that a state highway cut us off from the main part of the town. The location was disastrous for Mary Ann's inclusion in the community and it was not all that great for her brother Fred either, even though the children (and the dog) did benefit from a beautiful, idyllic spot backing up to conservation land. Two moves later brought us closer to the center of town, to town facilities, and to the schools.

When the time came to find Mary Ann independent living space, I had learned a lot about the importance of location. A committee of twenty-some Lexington families worked very hard to develop housing for our adult children with disabilities within the Town of Lexington. After about five years of fruitless searching, hearing over and over from state officials that there were no possibilities for help, suddenly we discovered a four-bedroom, two-bathroom Cape that was being built on a vacant lot just a block and a half from the center of town. With a little research we discovered that this house was being built by students at Minuteman Regional Vocational High School and that the property was part of Lexington's scattered-site, affordable housing. Three other families and I managed to figure out a way to establish a home for Mary Ann and three friends in this house, in their hometown. For several years the ladies and families paid all the costs, until eventually we were able to secure minimal state supplemental funding.

Living semi-independently in a house close to the town center has really anchored Mary Ann in her community. She walks to the bank, to restaurants, to the drugstore, to other shops, and to the church for choir practice and Sunday service. Every year she buys a bracelet that allows her to swim in the town pool, which is within walking distance. Merchants downtown know her, and when appropriate, the town police monitor her house. This August we will celebrate ten years of life in the "Waltham Street House." I still take great, if perverse, pleasure in the comment Mary Ann made to me as I drove her back to her new home after Thanksgiving weekend that first year: "Mom, I've had enough of you!"

Together, Mary Ann and I still face challenges in her life and mine. For reasons that I do not understand, the people in charge of Mary Ann's vocational program have not been able to find her a job in Lexington, even though all three of her housemates have such jobs. Once again, I will need to personally take on this task. In addition, although the staff people at her house have pretty good training, they have trouble figuring out how to connect the women with activities within their town. They tend to group them with people with disabilities from other houses in other towns and to bring them to another town's recreation program for people with disabilities. Here again, I need to pitch in and help.

During the past year I had begun to feel so discouraged about the functioning of Mary Ann's vocational and housing programs that I was seriously thinking about a major change. I am buying a triple-decker, with three apartments, one for me, one for my son and one that could be for Mary Ann. For several months Mary Ann seemed ambivalent about moving. I could not be sure about her wishes. Suddenly one day she asked me, "When are we moving to Somerville?" My heart sank because I had given up on her inclusion in the move. When I asked her, "Do you want to move to Somerville?" she firmly responded, "No!" Then finally I realized that during those months of seeming ambivalence, she probably was replying with what she thought I wanted to hear. Worse yet, I realized that she probably assumed that I would force her to move!

I hope this latest experience of having her own, personal wishes honored will strengthen Mary Ann's sense of autonomy and independence. Her choice also affirms my own original feeling that she needed to continue to live as an adult in the town where she grew up. Even though the Town of Lexington has changed during the last thirty years, there still is a comforting, regular rhythm to town life. For instance, there is always the Fourth of July Carnival, Discovery Day in May, and the Patriot's Day Parade in April. Mary Ann participates in all these activities, and more, completely on her own, without staff supervision or family interference. Even though I have had serious misgivings about Mary Ann's vocational program for some time, there too, she is content. She definitely "belongs" with the groups of people there, staff as well as clients. It provides an additional, extended community for her. I only hope that eventually she can experience that kind of extended family or community in an independent job within the Town of Lexington.

There are huge training needs for staff who support adults with disabilities. They usually know the basic health and safety precautions and sometimes they are effective with interpersonal relations. However, they need more in depth knowledge about what it means to belong to a community, to be an active participant. For example, in spite of many suggestions, staff at Mary Ann's house never help the ladies invite the next door neighbors, who are retired, over for tea. Vocational program staff need help with communication with parents and other family members. Sometimes there are remnants of the old attitude of low expectations about the disabled person's capabilities; I believe that view must account for the fact that Mary Ann has gone so long without having an independent job. Even the DMR case managers, who are very good in most respects, need more training and information about ways to help residential staff make the necessary connections to the local community.

I believe that what is happening is an unwitting layering of a "disability community" over or within the general community. It is very important for families, advocates, policy makers, and support staff to guard against this unintended outcome. Based on my experience in the Town of Lexington and my work with other families in other towns, I am convinced that today's communities, here in Massachusetts at least, are well prepared to welcome our adults with disabilities as citizen peers. When I take Mary Ann to vote, for example, one of the poll workers always welcomes her warmly; she has a similar experience everywhere downtown. The problem may also be magnified by the overall mobility most of us experience today; support staff are not living or working in their own hometowns.

My efforts to see Mary Ann continue to grow as an active, contributing community member have taken a new turn. I am now part of a new organization called PALS (Personal Advocacy and Lifetime Support, Inc.). It was founded by a group of parents like myself to provide a structure for establishing and maintaining networks of friends for our adult children with disabilities. The networks are recruited and maintained by trained facilitators engaged and supervised by PALS; they provide another structure to foster "belonging" that is designed to continue after we, the parents, are no longer available as primary support. I am looking forward to undertaking this new effort with Mary Ann, with the hope of further strengthening her ties to her community.

Mary Ann and Martha ZieglerMartha was the primary founder of the Federation for Children with Special Needs and the chief author of the federal legislation setting up a national program of similar Parent Training and Information centers. She has been honored for lifetime achievement by the Federation, the national Council for Exceptional Children, and the United States Department of Education. In October 2000 Martha was a keynote speaker at a national symposium on Capitol Hill, celebrating the 25th anniversary of the federal special education law. She and her daughter with autism, Mary Ann, were included as part of a team from the U.S. Department of Education to visit Ireland, offering assistance to the Irish government in planning services for children with autism. She has recently taught a graduate course on government policy and the family at Tufts University and she is helping colleagues at Tufts develop a new program in advocacy.

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