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)