This chapter focuses on the parents and families of exceptional children. It begins by discussing the change in relationship between professionals and families. Current best practices dictate developing relationships with the entire family and viewing the family as collaborative and empowered partners in the student’s education. Models of the family as a system are presented and the impact of the child with a disability on the different components of the family system is discussed. The chapter also discusses strategies for developing and facilitating effective collaborative partnerships with families of children with disabilities, including culturally and linguistically diverse families.

Learning Objectives:

• Outline the evolution of parent-professional partnerships.
• Describe the four key elements of a family systems model for understanding the impact of a disability on the family constellation.
• List the emotional responses associated with the stages of parents’ reaction to their child’s disability.
• Summarize the effects of an individual with a disability on family members.
• Explain how a family’s cultural and linguistic background influences its reaction to a disability.

Lecture Outline:

1. Working with Parents and Families of Children with Disabilities
   
   1. Changing roles for parents
      
      1. Parents are a child’s first teachers and the family is the primary means through which people learn the values and beliefs of their culture. Parenting a child with a disability provides many challenges and rewards and may change the family dynamics in many ways. Families with children with disabilities have the same hopes, concerns, and worries that many families experience.
      2. Parents and families have become valued partners in the decision-making process. An emphasis on families, rather than just parents, recognizes the importance of siblings or other family members. Professionals no longer provide suggestions and services to families; they now work collaboratively with families.
   2. Changing Professional Perspectives toward Families with a Child with a Disability
      
      1. Antagonistic and adversarial
      2. Building working partnerships
      3. Parent empowerment and family-centered relationships
   3. Family Systems Approach
      
      1. Turnbull et al. (2011) described the family systems approach as having an underlying belief that a family is an interrelated social system with unique characteristics and needs. Teachers and other service providers consider the needs and input of the whole family. Their model contains four key elements.
         1. Family characteristics: The features of each family that make it unique such as size, composition, cultural background, socioeconomic status, geographic location, or other factors.
         2. Family interactions: The relationships and interactions between various family members and within the family as a unit that are dependent upon the family members’ degree of cohesion and adaptability.
         3. Family functions: Interrelated activities that are necessary to fulfill the individual and collective needs of the family: affection, self-esteem, economics, daily care, socialization, recreation, education.
         4. Family life cycle: The developmental changes, or transitions, that families experience over time. They are generally age related such as high school graduation or entering kindergarten. Four main stages have been identified: Early Childhood (birth to age 5), School Age (ages 5-12), Adolescence (ages 12-21), and Adulthood (ages 21+).
   4. Parental Reactions to Disability
      
      1. All families have different perceptions and feelings that influence their reactions to a child with a disability. Some families may learn of the disability shortly after birth while other families may not find out for years.
      2. Stage theory has been used to describe the common stages that many families may experience as they respond to the news of their child’s disability. Families may fluctuate between stages.
   5. Disability and the Family
      
      1. Disability impacts the family as a system and the impact should be assessed upon the whole family and their relationships.
      2. Marital relationships
         1. Many marriages experience tension and stress while others experience strengthened relationships. It is likely that the success of marital relationships has much to do with personal characteristics.
         2. Mothers and fathers are often impacted in different ways by a child with a disability.
      3. Parent/child relationships
         1. Parents may feel overwhelmed, worry about finances, and face new roles and responsibilities. Parents’ attitudes will influence the attitudes of other family members.
      4. Sibling relationships
         1. Sibling relationships often depend on many factors including parental attitudes and expectations, family size, sibling gender and age spacing, child-rearing practices, cultural heritage, and availability of support systems. Siblings often report both positive and negative reactions including: increased tolerance and respect for diversity, increased compassion, higher levels of empathy and altruism, in addition to resentment, jealousy, hostility, guilt, grief, fear, shame and embarrassment, and rejection.
      5. Grandparent relationships
         1. Professionals are increasingly recognizing the importance of grandparents in the family unit. Grandparents may also experience stages of acceptance and worry about their grandchild in addition to their own child.
2. Working with Families Who are Culturally and Linguistically Diverse
   
   1. Cultural sensitivity implies an awareness of, respect for, and appreciation of the many factors that influence and shape the values, priorities, and perspectives of both individuals and families.
   2. Many school programs and strategies may have been designed to serve middle- or upper-income English-speaking families from the dominant culture and may not encourage participation in the home-school partnership for minority families.
   3. Culturally sensitive educational services
   4. Facilitate family and professional partnerships
      
      1. Awareness of and sensitivity to family needs are needed to form family-professional partnerships.
      2. Build relationship around trust, mutual understanding, caring, and respect.
      3. Honesty, empathy, and genuineness are needed as are active listening skills and attention to words, feelings, and attitudes.
   5. Cultural Reactions to Disability
      
      1. Because disability is socially and culturally constructed, families from culturally diverse backgrounds may have differing perspectives on what constitutes normal and deviance from the norm.
      2. Families from different cultures may attribute disability to a belief in fate, spiritual reasons, violation of social taboos, or intergenerational retribution. Differences in perceptions between professionals and families may result in conflicts of opinions and suggestions that may be inappropriate for some families.
      3. At the risk of stereotyping, some common cultural beliefs regarding the origins of disability include:
         1. Hispanic American families may consider a disability to be “God’s will”
         2. Asian-American families may feel that a disability brings shame upon the family, especially if the child is male
         3. Many Native American cultures have no word for disability and focus on individual strengths