Chapter 4
Parents, Families, and Exceptionalities
Parent-Professional Relationships: Periods in History
• Antagonistic and adversarial
• Working partnerships
• Parent empowerment and family-centered relationships
Antagonistic and Adversarial
• Eugenics Movement (early 1900’s)– Selective breeding; forced sterilization– Laws forbidding marriage between individuals
with mental retardation
• Professional Dominance (1940-1970)– Parents as the “cause” of disability– Expectation of deference to the professional may
have led parents to become aggressive activists
Working Partnerships
• PL 94-142 (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
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
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
Figure 4.1 A Timeline of the Changing Roles of Parents of Children with Disabilities
Collaborative Partnerships
• Families and professionals share– Commitment to jointly reach decisions– Information– Resources– Expertise– Mutual respect and support – Competency
Four Key Elements of the Family Systems Model
• Family Characteristics
• Family Interactions
• Family Function
• Family Life Cycle
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
Figure 4.2 A Family Systems Framework
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
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
Family Life Cycle(Turnbull & Turnbull, 1990)
• Early childhood (Birth-Age 5)
• School Age (Ages 5-12)
• Adolescence (Ages 12-21)
• Adulthood (Ages 21+)
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
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
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
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
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
Figure 4.3 A Stage Model of Parental Reaction to Disability
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
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
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
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
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
A Myriad of Feelings
Guilt
Withdrawal
ResentmentShame
Affection
Confusion
Compassion
Jealousy
Rejection
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
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
The Ingredients for Facilitating Family and Professional
Partnershipsactive listening
caring
cooperation
sensitivity
honesty
understanding
respect
empathy
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)