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With OSEP support, researchers are developing approaches that enhance families' abilities to contribute to their children's learning in the home and community. They also are identifying barriers to full family participation and suggesting solutions. Elements that can facilitate or limit family involvement are the types of activities families are expected to participate in, whether family members have sufficient preparation to feel comfortable participating, and school personnel's behavior toward family participation. Family Life as A Source of Children's Learning Opportunities "Our research has confirmed a basic fact: Parents do a very good job of engaging their children in a rich array of everyday learning experiences," Carl Dunst, researcher at the Orelena Hawks Puckett Institute in North Carolina tells us. "All settings have the potential to offer rich learning experiences— just have to figure out what makes sense for a particular child and his or her family." With OSEP support, Dunst and his colleagues have been studying how family and community life provides children different kinds of natural learning opportunities. "Family life provides a rich source of events that can be seized as learning opportunities," Dunst explains. "Parents can be partners in reinforcing school learning at home, especially if good communication has been established between the school and home and if goals in the Individualized Education Program (IEP) have been written to promote collaboration." A particular research focus has been on infants, toddlers, and preschoolers who have or are at risk for delays in their development— goal being to identify, develop, and evaluate ways of using family and community life as sources of learning activities and opportunities promoting child abilities. Dunst conducted two national surveys of nearly 3,300 parents to learn about sources of children's learning activities and the kinds of practices associated with benefits to the child, parents, and family. Respondents were asked if the activities or settings listed on the survey were places where their children learned or exhibited desired behavior. Care was taken to ensure that activities listed made sense in terms of ethnic and cultural backgrounds of families across all walks of life. "Findings from our research indicate that everyday family and community activity settings are real life, natural learning environments that make the most sense in terms of learning important life skills," Dunst explains. "Consider these examples: a parent holding a baby on her lap while pointing and talking about a robin sitting on a tree limb, dropping bread crumbs into a fish or duck pond and watching what ensues, asking a child to lift his arm while putting on a shirt— participating in each of these activities, children learn about people and things in their world. When these activities enhance development, they foster a child's sense of mastery and knowing about his or her own capabilities." Findings show that children participate in many different social and physical settings— average, children participate in some 150 different kinds of social and physical settings as part of family and community life. Dunst has integrated his research findings into a model of early intervention that includes children's learning opportunities, parenting supports (e.g., information and guidance that strengthens existing parenting knowledge and skills), and family/community supports provided in a family-centered manner. As part of intervention studies with children and their families, Dunst evaluated four procedures: A schedule for reminding parents to involve their children in learning activities. A matrix for focusing on the child's behaviors in different learning activities. Parent responsiveness to desired child behavior as a teaching method. Family and community activities as learning opportunities on a child's Individualized Family Service Plan (IFSP) or IEP. "We found that participation in activities that matched and built upon children's interests was consistently associated with benefits to the child, parent, and family," Dunst reports. "We also discovered the KISS principle (keep it situational and simple), which has become a standard for guiding parent's capacity to include children with disabilities in participatory learning experiences." Categories of Family and Community Activity Settings and Learning Opportunities Family Life Family Routines (e.g., cooking meals, food shopping) Parenting Routines (e.g., child's bedtime or bath time) Child Routines (e.g., dressing, grooming) Literacy Activities (e.g., storytelling, looking at books) Physical Play Play Activities Entertainment Activities (e.g., music, television) Family Rituals (e.g., family talks, saying grace) Family Celebrations (e.g., birthdays) Socialization Activities (e.g., visiting friends, family gatherings) Gardening Activities Community Life Family Excursions (e.g., car or bus rides) Family Outings (e.g., visiting friends, eating out) Play Activities Community Events (e.g., going to the library) Outdoor Activities (e.g., parades, walks) Recreation Activities (e.g., swimming) Children's Attractions (e.g., museums, zoo) Art/Entertainment Activities Church/Religious Groups Organization/Groups (e.g., classes) Sports Activities/Events Focusing on Child and Family Strengths Michelle Davis provides direct service to families at the Puckett Institute in North Carolina. Davis says that everything must start and end with the child's and family's strengths. "I avoid using the word behavior or talking about problems the child may have," Davis explains. "Instead, I talk with families about what the child likes to do, what the child likes, and what makes the child smile." The process is collaborative and recognizes family knowledge and expertise. "We generally start with sharing our views of the child's strengths," Davis explains. Families discuss the child's preferences and interests. Part of the conversation focuses on what an ordinary day in the family entails. Families start at the beginning of the day— happens when the child wakes up, gets dressed, and eats breakfast— continue to the end of the day. The focus always is on opportunities for the child to be involved with the family. "Typically, we discuss things that the child likes to do with other family members," Davis says. "From there we spend time discussing how those activities might be enhanced. For example, a parent might identify meal time as something the child loves. Upon further discussion, it becomes apparent that the family usually is talkative during the meal. "So, we might decide to enhance the child's language production during the mealtime." Davis says that the process of suggesting responsive techniques (e.g., enhancing the child's language production) is collaborative. "The emphasis is always on engaging the child in the interaction with the parent responding to the child," Davis adds. Davis stresses that it is important to enhance naturally occurring activities, rather than add extra things for the family to do. "The goal is to find ways to build on what the family is already contributing to their child's learning and growth." Cultural Reciprocity Aids Collaboration with Families A service provider and family member meet for the first time. If the parent's perspective of the world is similar to the service provider's, then a positive connection generally occurs. However, if the parent holds a belief system different than the service provider's, difficulties typically arise. According to University of Miami researcher, Beth Harry, the source of the difficulty often is a point of view that is defined and limited by cultural orientation. Helping families and service providers find mutual ground for communication served as the focus for the OSEP-funded Longitudinal Family Study, conducted by Harry and her colleague Monimalka Day. The study was part of a larger initiative of the Consortium for Collaborative Research on Social Relationships. Harry contends that culture influences our assumptions about disability. "For example, in another study I found that individuals from Puerto Rican backgrounds tended to view disabilities as more severe conditions than do people from the mainstream United States— fact, many of our high incidence disabilities were not seen by them as disabilities, but simply as individual characteristics within the normal range," Harry explains. "We observed that when parents from Puerto Rico realized their views were not valued by Anglo service providers, they stopped participating in their child's educational process." As the U.S. becomes more diverse, different cultural beliefs and practices are more often cited as a barrier to effective interaction. However, many researchers have noted that it is most often people from the minority group who are required to understand or become acculturated to the ways of the majority group. "The process of acculturation takes time, and professionals who are hoping to make a difference for children must be willing to take the initiative in building a bridge between the cultures of diverse families and the culture of schools," Harry asserts. To do this, Harry advocates that professionals initiate a two-way process of information sharing and understanding called cultural reciprocity. "Working with families in the U.S. means working with multicultural families. There should be a strong multicultural and family component in every teacher education program." Beth Harry, Researcher, University of Miami The cultural reciprocity process is recursive, meaning that each step informs the others. The steps are Step 1: Identify the cultural values that are embedded in your interpretation of a student's difficulties or in the recommendation for service. For example, imagine that you have recommended that a young adult with developmental disabilities move out of the family home into a small group home or supported apartment. Ask yourself which values underlie your recommendation. For many of us, central to our recommendation will be the values of equity, independence, and individuality. Next, analyze your experiences that contributed to your holding these values. Consider the roles of nationality, culture, socio-economic status, and professional education in shaping your values. Step 2: Find out whether the family being served recognizes and values your assumptions, and if not, how their view differs from yours. Step 3: Acknowledge and give explicit respect to any cultural differences identified, and fully explain the cultural basis of your assumptions. Step 4: Through discussion and collaboration, set about determining the most effective way of adapting your professional interpretations or recommendations to the value system of this family. "By developing your own cultural self-awareness, you are able to recognize the cultural underpinnings of your professional practice," Harry points out. "This, in turn, enables you to facilitate conversations with the families with whom you interact, toward identifying the values and beliefs that underlie their priorities, goals, and vision for their child." Harry adds that through the process, families also acquire knowledge about the special education system, which supports them in making informed decisions about services. "With cultural reciprocity, we find not only better relationships, but more reasonable goals that are implemented." Building Reciprocity— Personal Account "Before learning the reciprocity process, I was somewhat closed minded," Yamile Llano, who is Hispanic of Cuban origin and teaches at Felix Varela Senior High School in Miami, FL, shares. "But now I understand that where there is love, there is acceptance." As a graduate student in one of Harry's special education courses, Llano was required to participate in a number of activities with families based on Harry's cultural reciprocity research. One activity involved attending a social event with one of her students and his or her family. Llano selected Jack, an African American youngster, and arranged to attend church with him and his family. Following is an excerpt from Llano's journal entry. "…I was very nervous. I was on my way to a Baptist church in a predominantly black neighborhood. My stomach was in knots…I am of Catholic faith and I was not sure what to expect. As I waited for the family, many people looked at me as if I were lost. I really did not fit in, I stood out like a sore thumb…I felt as if I were intruding. As people stared at me, I simply smiled and said 'Hello'. I just wanted to disappear. When I saw Jack's family, I felt more comfortable. They welcomed me very warmly and Jack shook my hand for the first time. It was then I felt I was in a very warm atmosphere. The church felt like one big family—very different from the church I regularly attend. At my church, when people walk in, they are very quiet and very careful not to make the slightest noise. At Jack's church, everyone was happy and no one whispered. This made me feel good. Jack's family interacted with everyone. I noticed that everyone greeted Jack—just like everyone else. No one treated him differently. Jack was accepted as he was. I tried to see if anyone treated Jack differently, but I saw no evidence of that. Instead, what I saw was a close knit community that was accepting of Jack's disability." According to Llano, that experience taught her a lot about herself. "Many times we make assumptions about people based on race, religion, and other factors that hinder us into not mixing and mingling with other people. I thought people in the church would not be accepting of me because of my race and my religion—but I was wrong!" Llano encourages other service providers to move outside their circles and experience, as she did, into her students' families and lives. "You will feel richer for the experience." Helping Families Deal with Stress For almost two decades, researcher George Singer at the University of California-Santa Barbara has been studying the effects of parenting a child with a disability with an eye toward how service providers may better support children with disabilities and their families. In recent years, Singer has turned his attention to the experience of new immigrants upon learning that their child is disabled. "Families for whom English is not spoken as the first language often face increased stress," Singer says. In one study, Singer investigated Latino families in the neo-natal intensive care unit (NICU) of a hospital. "The NICU is the point of entry into the service system for children with disabilities, as infants with very low birth weight are at high risk for developmental disabilities," Singer explains. "An encounter with the NICU normally generates high levels of stress, and for some, clinical levels of depression and anxiety for English speaking people in the majority culture. We suspected that such stress would be magnified among Latino, limited English proficiency families." As suspected, results indicated that in addition to basic levels of stress associated with the NICU experience, the Latino families in the study experienced an added level of stress due to communication and cultural barriers. "In all cases, there was a real need for information. The communication/cultural barriers often led to misunderstandings, distrust, and a perceived inaccessibility of doctors and nurses," Singer noted. "Any attempts at communication, however, were perceived by the families as beneficial." The families in Singer's research identified several coping mechanisms: support from extended family members, parent-to-parent contact, involvement of the infant's siblings, and religion/faith. In another study, Singer and his colleagues investigated the experiences of Korean immigrants and found that while Korean families tend to cope with parenting a child with a severe disability (e.g., autism, Down syndrome), the ongoing challenges of raising the child may be stressful. "Overall, for Korean families the challenges include difficulties in access to social services and communication difficulties with professionals due to language barriers," Singer reports. "These families particularly need support immediately after diagnosis when many reported a severe emotional crisis." According to Singer, providing translators is essential. Also, parents need access to information. "Often children are not served because their parents are not aware of available services, of what is possible," Singer adds. RESOURCE PEER Project: Federation for Children with Special Needs "Parent participation has changed over time— has evolved from pioneering efforts to ensure that a child with disabilities gained access to services to making an impact on systems," says Richard Robison, Executive Director of the Federation for Children with Special Needs (FCSN). FCSN directs the OSEP-funded Parents Engaged in Education Reform (PEER) project. PEER believes that all children should be included in standards-based education reform and its accountability systems. As part of the PEER project, Director Carolyn Romano and her colleagues developed the manual, Every Single Student: A PEER Resource Manual on Standards-based Education and Students with Disabilities (download from www.fcsn.org/peer) which provides families with information about how they might participate in education reform efforts. Sections cover topics such as standards, accommodations, assessment, transition, curriculum and instruction, IDEA, and the legal basis for including children with disabilities in education reform. Each includes an information brief and a shorter fact sheet which can be disseminated widely. "We wanted to make sure that parents and parent leaders understood education reform so that they could ensure that children with disabilities received the benefits of reform," Romano explained. Among the many benefits of including children with disabilities in reform, Romano cites the following: Higher standards and expectations for all. Access to the general education curriculum. Accountability for schools and students. More parents of children with disabilities involved in the regular education system.

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