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 FamilyCentered 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, overidentification 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
Confusion Guilt
Rejection
Affection
Compassion
Withdrawal
Jealousy
Resentment
Shame
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
Partnerships
active listening
empathy
caring
respect
cooperation
understanding
sensitivity
honesty
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)