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April 1, 1996
Vol. 53
No. 7

Listening to Parents of Children with Disabilities

    Interviews with parents of mainstreamed children shed light on building effective school-home partnerships.

      A growing number of children with disabilities are becoming members of general education classes. As someone involved in teacher preparation, I am particularly interested in what teaching teams can do to build productive alliances, or strengthen existing relationships, with the parents or caregivers of these children.
      To explore this issue, I conducted a series of in-depth interviews with 15 families (21 parents) whose children were fully included in general education programs—mostly at the elementary level. Many of these children needed a great deal of support and modification to participate successfully in general classes. Overall, these parents were extremely pleased with the impact that inclusion had on their children. They also offered suggestions for improving the quality of home-school relationships. The following recommendations to teaching teams come from an analysis of these parents' perspectives.
      Convey a clear, consistent message regarding the value of the child. How school personnel talk about children in both formal and informal interactions early in the school year has a significant impact on the development of relationships with their families. Several parents in this study valued the ability of teachers to see different aspects of a child's personality aside from academic achievement. As Gail put it, For teachers to say to me, "I really like your kid," or "You know, he really has a great sense of humor"... lets me know that they really care about him as a person.
      These parents also commended personnel who focused on the individual child's progress, rather than using other children as a reference for comparison. As Anna said: So our child's not going to be the top of her class in gym. We understand that. Just take her for who she is. Find space for her.
      Members of the teaching team need to convey clear, consistent messages that they are happy to have this child in the classroom and that they hold high expectations for the child's achievement.
      Put yourself in the shoes of the parent. The parents I interviewed valued the efforts of school personnel to try to understand what it is like to have a child with a disability—for example, to have to negotiate both the general and special education bureaucracies in order to gain access to classes, accommodations, and support services. Several of these parents felt that some staff did not understand their anger and frustration with educational systems. While one mother felt more strongly than others I spoke with, she expressed the sense of detachment experienced by families of children in special education: Parents hate special ed.... Parents hate it because the kids hate it.... They hate the isolation of it.
      Parents often felt they were viewed as impatient. They wanted staff to better understand their frustration with the slow pace of school improvement efforts related to inclusive practices. School staff who attempt to understand the parent's frame of reference are less likely to assume the judgmental attitudes that can be damaging to the home-school relationship.
      Expand your awareness of cultural diversity. Building an awareness of cultural diversity will strengthen school personnel's ability to teach as well as connect successfully with families. Marguerite believed that "a lot of teachers have never had ... training in multiculturalism or diversity." Through effective staff development, schools can help personnel examine "the cultural base of their own belief system" in relation to children and families (Harry 1992, p. 23), and how these beliefs affect relationships.
      Harry and colleagues emphasize that cultures are greatly influenced by generational status, gender, social class, education, occupational group, and other variables (1995, p. 106). Such an approach to professional development will help personnel be aware of the cultural lenses through which they make judgments about children and families.
      See individuals, challenge stereotypes. A few parents felt that some teachers made assumptions about them and their parenting skills simply because their child had a disability. Doria saw some of these attitudes arising from a lack of understanding of some types of disabilities such as emotional disturbance. Marguerite felt that school personnel frequently "lumped parents together"—working from inaccurate assumptions about single parents and parents who were not of European heritage. School personnel need opportunities to explore the impulse to stereotype, and encouragement and support to challenge this tendency in themselves as well as their colleagues.
      Persevere in building partnerships. While federal law requires school teams to invite parents into the planning process for their children with disabilities, the collaborative outcome envisioned by the legislation does not always materialize. Several parents thought that schools gave up too soon—that personnel were quick to dismiss parents who didn't attend meetings, and were cynical about the possibilities for change. Parents felt that building partnerships took commitment and vision over the long term. As one father stated, "The first year you make a decision to team with parents, maybe you're not going to get all the parents ... but give it a little time, nurture it along."
      Parents suggested looking at how schools share information with parents, using more flexibility in setting up meeting times with them, and assisting parents in connecting with other parents who might share child care responsibilities to free one another to attend planning meetings.
      Demonstrate an authentic interest in the parent's goals for the child. A first step in establishing dialogue is to connect with parents as individuals. Participants in the study commended some staff as very skilled in diminishing the psychological distance between parents and professionals. These teachers were able to create an atmosphere where parents did not feel that they had to "watch their p's and q's," as one parent put it. Staff did this through their choice of language, as well as their interaction styles. Their interest in parents' ideas felt authentic.
      Parents also mentioned interactions that they viewed as evidence of an "expert syndrome." In these cases, parents felt that the attitude coming from staff was, "You couldn't possibly know what you're talking about." One parent described a critical distinction between those personnel who talk with parents as opposed to those who talk at them. Teachers can maintain their expertise as educators while fully acknowledging the information and insights held by parents. The interplay of these complementary roles can greatly enrich the outcome for students.
      Talk with parents about how they want to share information. Successful collaboration requires effective ongoing communication between home and school. Some participants thought that having one school person as the primary contact would be helpful. Several parents in this study did not want their primary contact to be a special educator, for fear that this would lessen the feelings of ownership on the part of the general educator for the child's progress. Yet consistent communication with a person who really knew the child and his or her unique learning characteristics was important.
      Teachers need to ask parents which school representative they would like to communicate with, how frequently, and through which means (for example, combinations of meetings, phone calls, and written communication). Moreover, parents' preferences for involvement may change over time given a variety of factors such as the child's age and the family's circumstances.
      Several families found home visits by school staff very helpful. Parents felt that opportunities to visit with children in their homes might give staff insight into children's capabilities that had not been demonstrated at school.
      Use everyday language. Parents often felt excluded from the planning process when professionals used unfamiliar educational terms when discussing test results, staffing patterns, and ways of organizing and identifying services. One parent referred to this practice as "blowing all that smoke." As another put it: What does it mean "30 minutes three times a week," "one plus one," "parallel curriculum"?....When you do that stuff you just close out the parent. As soon as you use language that's exclusive of parents, they're gone.
      It is an unfortunate irony that in order to graduate from many teacher preparation programs, preservice teachers must master a professional lexicon that ultimately creates significant barriers to being effective in their professions.
      Create effective forums for planning and problem solving. Yearly review meetings, mandated by law, are held for each child with an Individualized Education Plan (IEP). During these meetings, school personnel and parents (and students at the secondary level) review assessments, make placement decisions, determine children's services, and identify individual goals. The parents I interviewed described these formal meetings as some of the most difficult interactions they experienced during the year. They used such phrases as "very intimidating" to describe them, adding that they felt at times like token participants in discussions about their children.
      In contrast to these formal yearly reviews, at least six of the children involved in this study were the focus of regularly scheduled team meetings, composed of teachers, parents, related service providers, and occasionally teaching assistants. Although evaluations of these meetings varied greatly, parents indicated that, compared to the formal meetings, they felt more comfortable discussing their children in an atmosphere that recognized achievements, friendships, interesting stories, and humorous anecdotes. As one mother put it, When we go to team meetings, a lot of times it is a celebration. That's how it feels. By George, we're doing something right here—it's working!The literature offers direction for districts interested in developing their expertise in the arena of team planning for individual children (Giangreco 1996, Giangreco et al. 1993, Thousand and Villa 1992).
      Build long-term schoolwide plans that offer full membership to all children. Several of the parents I interviewed had advocated extensively for a general class placement for their child. Schools will not become proficient in building alliances with these families until general class membership, with adequate supports, is the norm for children with disabilities. These findings reinforce calls from parents and others in the educational community for districts to develop long-term schoolwide plans to offer full membership to all students, not just set up programs for children in response to the requests of individual parents (Gartner and Lipsky 1987, Stainback and Stainback 1990). Teachers can actively support such restructuring (with appropriate safeguards to ensure adequate resources). Such efforts will result in inclusive settings becoming available to those children whose parents are not in a position to pursue such extensive advocacy actions.

      Gartner, A., and D. Lipsky. (1987). "Beyond Special Education: Toward a Quality System for all Students." Harvard Educational Review 57, 4: 367-395.

      Giangreco, M. F. (1996). Vermont Interdependent Services Team Approach: A Guide to Coordinating Educational Support Services. Baltimore: Paul H. Brookes.

      Giangreco, M. F., C. J. Cloninger, and V. S. Iverson. (1993). Choosing Options and Accommodations for Children (COACH). Baltimore: Paul H. Brookes.

      Harry, B. (1992). Cultural Diversity, Families, and the Special Education System. New York: Teachers College Press.

      Harry, B., M. Grenot-Scheyer, M. Smith-Lewis, H. Park, F. Xin, and I. Schwartz. (1995). "Developing Culturally Inclusive Services for Individuals with Severe Disabilities." The Journal of The Association for Persons with Severe Handicaps 20, 2: 99-109.

      Stainback, S., and W. Stainback. (1990). "Inclusive Schooling." In Support Networks for Inclusive Schooling, edited by W. Stainback, and S. Stainback. Baltimore: Paul H. Brookes.

      Thousand, J. S., and R. Villa. (1992). "Collaborative Teams: A Powerful Tool in School Restructuring." In Restructuring for Caring and Effective Schools, edited by R. A. Villa, J. S. Thousand, W. Stainback, and S. Stainback. Baltimore: Paul H. Brookes.

      End Notes

      1 Parents' names are pseudonyms.

      Linda Davern has been a contributor to Educational Leadership.

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