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Chapter 4 Parents, Families, and Exceptionalities.

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Presentation on theme: "Chapter 4 Parents, Families, and Exceptionalities."— Presentation transcript:

1 Chapter 4 Parents, Families, and Exceptionalities

2 Parent-Professional Relationships: Periods in History Antagonistic and adversarial Working partnerships Parent empowerment and family-centered relationships

3 Antagonistic and Adversarial Eugenics Movement (early 1900’s) –Selective breeding; forced sterilization –Laws forbidding marriage between individuals with mental retardation Professional Dominance ( ) –Parents as the “cause” of disability –Expectation of deference to the professional may have led parents to become aggressive activists

4 Working Partnerships PL (1975) required that parents participate fully in educational decisions Parents receive counseling, clinical information, training in related skills, development, and behavior management Home-based plans to “follow through” with the teachers’ lessons

5 Parent Empowerment and Family- Centered Relationships IDEA (1990) ushered in a new era Collaborative partners Parents actively participated in educational decision making –Identification and assessment –Program planning –Evaluation –Input on placement decisions

6 Today’s Family (Garner, Lipsky, & Turnbull, 1991) Vision replaces despair Benefit from one another providing information and emotional support Realize the importance of opportunities for integrated socialization Expect their child will receive a functional education taught in a natural environment Lobby for new policies to assist with financial demands associated with disability

7 Figure 4.1 A Timeline of the Changing Roles of Parents of Children with Disabilities

8 Collaborative Partnerships Families and professionals share –Commitment to jointly reach decisions –Information –Resources –Expertise –Mutual respect and support –Competency

9 Four Key Elements of the Family Systems Model Family Characteristics Family Interactions Family Function Family Life Cycle

10 Family Characteristics Size and form Cultural background Socioeconomic status Geographic location Family health status Special challenges –Poverty, substance abuse –Parents who themselves have a disability

11 Figure 4.2 A Family Systems Framework

12 Family Interactions Cohesion –Degree of freedom and independence experienced by each member of the family –Occurs along a continuum Adaptability –Ability to change in response to the environment –Contingent on family dynamics –Influenced by cultural background

13 Family Functions Affection: emotional commitments Self-esteem: personal identity, self-worth Economics: family income Survival: food, shelter, health care Socialization: interpersonal relationships, social skills Recreation: leisure activities Education: level of involvement, career choice

14 Family Life Cycle (Turnbull & Turnbull, 1990) Early childhood (Birth-Age 5) School Age (Ages 5-12) Adolescence (Ages 12-21) Adulthood (Ages 21+)

15 Early Childhood (Turnbull & Turnbull, 1990) Parents are concerned with: –Diagnosis –Service locations –Stigmatization issues –Setting expectations –Making informed decisions Siblings are concerned with: –Possible jealousy from shared attention –Fears related to misunderstanding

16 School Age (Turnbull & Turnbull, 1990) Parents are concerned with: –Educational implications of the disability –Participation in IEP decision making process –Coordination of extracurricular activities and family functions Siblings are concerned with: –The scope of their care taking responsibilities –Telling teachers and friends; going to the same school –The division of family finances

17 Adolescence (Turnbull & Turnbull, 1990) Parents are concerned with: –Plans for postsecondary education or vocational development –The physical, emotional, sexuality changes –Social acceptance Siblings are concerned with: –Stigma and embarrassment, over- identification with sibling –Supporting and understanding of differences

18 Adulthood (Turnbull & Turnbull, 1990) Parents are concerned with: –Planning for possible guardianship –Addressing adult dependency issues –Socialization and intimacy –Career decisions, financial independence Siblings are concerned with: –Financial support, issues of guardianship –Genetic implications –Information on career/living options

19 Stages of Parental Reaction to Disability The order of parental response is not predictable, nor does movement completely depend on successful resolution of an earlier feeling Stages should be viewed as fluid, with parents passing back and forward during the adjustment process Both parents do not necessarily go through the stages together

20 Figure 4.3 A Stage Model of Parental Reaction to Disability

21 Primary Phase Initially there is shock and disbelief Parents may then mourn the loss of their “ideal child” or “perfect baby” Denial and escape from reality are forms of escape from the reality of the disability Depression and withdrawal are common consequences of this “grieving” stage

22 Secondary Phase Vacillation and ambivalence towards parental role—martyrdom, rejection, dedication Dealing with guilt—“if only I hadn’t; if only we had”, overcompensation, embarrassment Anger and hostility against “fate” may be transferred to another caretaker, the child, or medical /service professionals Social withdrawal, fear of rejection

23 Tertiary Phase Bargaining with powerful others: God, medical providers, science, teachers Adaptation: emotional and environmental Reorganization of priorities Acceptance: deliberate effort to recognize, understand, and solve problems Adjustment: a lifelong demand to realign goals and ambitions with changing situations

24 Adaptation Factors Family structure Religious beliefs Values and cultural heritage Financial resources External support systems Characteristics of the child –Gender –Severity of the disability –Independence

25 Sibship Factors (Garguilo & Kilgo, 2005) Are dependent upon: –Parental attitudes –Family size and support system –Socioeconomic status –Severity and type of impairment –Gender of sibling –Age and spacing of sibling –Child rearing practices –Cultural heritage

26 A Myriad of Feelings Guilt Compassion Withdrawal Jealousy Shame Resentment Affection Rejection Confusion

27 Cultural and Linguistic Diversity Relationships will require cultural sensitivity –Respect for family’s interpretation of disability –Understanding of their child-rearing beliefs, medical practices, and traditions –Awareness of the family’s structure and decision-making style –The family’s value system and religious belief –Acknowledgment of cultural traditions

28 Cultural Interpretations of Disability As retribution for the violation of social taboos Intergenerational reprisals (sins of the fathers are vested on the sons) Not a problem unless it effects child’s ability to function in the home environment Dependent upon expectations for child’s future God’s will, fate Punishment for sins Prenatal choices Welcomed, integrated, accepted

29 The Ingredients for Facilitating Family and Professional Partnerships active listening caring cooperation sensitivityhonesty understanding respect

30 Fostering Effective Alliance with Families Explain terminology Acknowledge feelings Listen Use a two-step process of diagnosis & absorption time Keep parents informed Be accountable Recognize diversity in family structures and parenting styles (Garguilo & Graves, 1991)


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