Roles and Perspectives in Parenting Children with Disabilities

Chapter Four Parents, Families, and Exceptionality

a. Changing roles for parents 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. 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

Changing Professional Perspectives toward Families with a Child with a Disability Antagonistic and adversarial Building working partnerships Parent empowerment and family-centered relationships Family Systems Approach 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. Family characteristics: The features of each family that make it unique such as size, composition, cultural background, socioeconomic status, geographic location, or other factors. 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. 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. 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+).

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Table 4.2 Potential Family Life Cycle Issues Table 4.2 Potential Family Life Cycle Issues

Parental Reactions to Disability 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. 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

Stages of Parental Reaction to Disability Shock Denial Grief and Depression Ambivalence Guilt Anger Shame Bargaining Adaptation Acceptance 11

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Disability and the Family Disability impacts relationships within the family including: Marital relationships 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. Mothers and fathers are often impacted in different ways by a child with a disability Parent/child relationships Parents may feel overwhelmed, worry about finances, and face new roles and responsibilities. Parents attitudes will influence the attitudes of other family members. Sibling relationships Sibling relationships often depend on many factors including parental attitudes and expectations, family size, sibling gender andage 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. 13

Grandparent relationships 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

Cultural Reactions to Disability Generally speaking, in the United States, it is believed that the cause of a disability can be identified and treated scientifically Different cultures may view disability in different ways: Fate Spiritual or religious reasons Violation of social taboos Intergenerational retribution A form of diversity 15

Working With Families Who Are Culturally and Linguistically Diverse 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. 16

Recommendations for Providing Families with Culturally Sensitive Services Use the family's desired language and preferred mode of communication Recognize the importance of extended family members Use culturally competent interpreters Learn about culturally relevant variables 17

Recommendations for Providing Families with Culturally Sensitive Services Participate in the local community Learn a working knowledge of the language Address family members using formal titles Consider possible barriers to meetings such as child care or transportation issues Welcome community members as cultural liaisons

Suggestions for Facilitating Family and Professional Partnerships Active listening Establish an atmosphere of genuine caring Awareness of both verbal and nonverbal messages and their significance Involve families in decision-making processes and keep them informed Explain educational terminology Acknowledge feelings Be accountable 19