PARENTS, FAMILIES, AND EXCEPTIONALITY

Learning Objectives:
 Discuss the evolution of parent- professional partnerships.
 Describe the four elements of a family systems model for understanding the impact of a
disability on the family constellation.
 Identify the emotional responses associated with the stages of parents’ reaction to their
child’s disability.
 Summarize the effects of an individual with a disability on family members.
 Explain how a family’s cultural and linguistic background influences its reaction to a
disability.

Being a parent of a child with disability is not a role most parents willingly choose for themselves.
Parenting a child with disability can be difficult, demanding, and confusing job, yet we believe it is a
role that can also be filled with joy, triumphs and satisfaction. Families of children with disabilities
have strengths and resources as well as challenges and stresses experienced. Parents- professional
partnership is essential to fully meet the child’s needs.

Nowadays parents and professionals work hand in hand and in constant communication for a child
with disability to be able to cater his/her needs, delivering interventions to maximize the child’s
potential. Professionals find the role of the parents important for the success of the educational
experience.

Is this kind of scenario present even before?

Let us study the timeline below.

The timeline shows that the role
Timeline of the Changing Roles of Parents/
Families of Children with Disabilities and function of parents in the
educational program of the child
with disability differ in each era.
Sad to note that there had been a
time when parent-professional
relationship was gloomy. However,
as the years continue there had
also been positive changes of the
relationship which led to what it is
now. From regarding parents and
other family members as part of
the child’s problem to involving
each family member in addressing
the challenges of the
exceptionality.
PERIODS OF PARENT-PRIFESSIONAL RELATIONSHIPS

1. ANTAGONISTIC AND ADVERSARIAL RELATIONSHIPS

(mid 1940s to early 1970s)
 The period where parents were told to be the cause of their
child’s disability. Bettelheim(1950,1967
 Characterized by professional dominance where they are
considered the exclusive source of knowledge.
 Bettelheim(1950,1967) coined the term ” refrigerator mom” and
saw parents, especially mothers, as the primary reason their
son/ daughter is autistic.

2. WORKING PARTNERSHIPS
 With the enactment of the Public Law 94-142 in 1975 which is
now known as the Individuals with Disabilities Education Act, or
IDEA, requiring that parents participate fully in the education
decisions affecting their son or daughter.
 In this period, the status of parents has changed from passive
recipients of services and advise to active participants-
educational decision maker.
 The new roles of parents include active involvement in the
identification and assessment process, program planning, and
evaluation, as well as input on placement decisions.

Identification and Assessment Process

Assessment Process

PARENTS
Programm Planning Placement decisions
and Evaluation

3. PARENT EMPOWERMENT AND FAMILY- CENTERED RELATIONSHIPS

 The implementation of the Public Law 99-457 (necessitates
states to make available appropriate and free public education
to children ages 3 through 5 who are disabled) and
 Public Law101-476 (renamed the legislation as the Individuals
with Disabilities education Act or IDEA and added Traumatic
Brain Injury or TBI and Autism to the category of disabilities,
signaled a change that families, not parents, should be the focal
point of professionals’ attention.

 This period redefines the role of the special educator who now
operate under the assumption that the family serves as the
primary decision maker to setting goals and priorities for the
student with disability.

 Professionals no longer provide suggestions and services to

families; rather, they work collaboratively with families, acting
as coordinators and facilitators of service delivery.

 That collaborative partnership between home and school is

important. The actions of parents, siblings, grandparents,
teachers and other professionals all influence one another.
 A FAMILY SYSTEMS APPROACH

A FAMILY SYSTEMS APPROACH

Family is an interrelated social system with unique characteristics and needs operating as
an interactive and interdependent unit. Events and experiences that affect a particular
family member also affect the other members of the family. Thus, teachers and other
service providers consider the entire family constellation as the appropriate focal point for
attention, and the development of the FAMILY SYSTEMS MODEL.

FAMILY SYSTEMS MODEL: a model that considers a family as an interrelated social system
with unique characteristics.

Family Systems Framework

This framework was developed by

A. Turnbull and H. Turnbull in 2015
for applying family systems
concepts to the study of families
that have a child who is disabled.
The model contains 4 key elements
(Family characteristics, Family
interactions, Family functions and
Family life cycle).

How does each element in the Family Systems model impact the family
constellation having a child with disability?
 4 KEY ELEMENTS OF A FAMILY SYSTEMS MODEL

Family Characteristics
 Are those features that make the family unique like family size and form, cultural
background, socioeconomic status, geographical location, each member’s health
status(both physical and mental), each member’s individual coping style and nature
and severity of each member’s disability.

 Poverty, substance abuse,, Parents who themselves have diability are also included

 How a family responds to the individual’s exceptionality are influenced by these

characteristics.

Family Interactions
 Is comprised of relationships and interactions among and between the various family
sybsystems, their degree of cohesion and adaptability.

 Cohesionis the degree of freedom and independence experienced by each member of

the family; Adaptability is defined as family’s ability to change in response to a crisis.

 The degree of cohesion may affect the development of an individual’s autonomy,

independence and ability to receive needed support while the degree of adaptability
may place a family at risk of becoming isolated and dysfunctional

Family Functions
 Are seven interrelated activitie/functionss necessary to fulfill the individual and
collective needs of the family

 Affection, Self-esteem, Economics, Daily care, Socialization, Recreation, and Education

Are the seven functions

 Families differ in their need of assistance in the different areas. The amount of help
from professionals will vary depending on specific circumstances.

Family Life Cycle

 Refers to developmental changes that occur in familiy overtime that may alter structure
of the family , affecting relationships, functions, interactions.

 are higly age related according to Seligman and darling (2007), that as the family moves
to its life cycle and encounters new situations, its priorities shift.

Early Childhood School Age(5-12) Adolescence (12-21) Adulthood

(Birth to Age 5) Ages 21 and above
POTENTIAL FAMILY LIFE CYCLE ISSUES
 THE EFFECTS OF A CHILD’S DISABILITY ON PARENTS AND THE FAMILY

Having a child with disability produces a wide range of reactions, responses

and feelings to parents and each member of the family. The awareness may
come shortly after birth of the baby, during pre-school years or upon entering
school. Perceptions and feelings towards having a family member with
disability is subjective and personalized for each family member. In some
families, having a child with disability is a tragedy or a crisis. Some may manage
the crisis appropriately while others struggle.
Is

What are the emotional responses associated with the

stages of parents’ reaction to their child’s disability? Do
parents follow the same pattern?
 Not all parents follow a sequential pattern of reaction
according to a predetermined timetable. The stages should
be viewed fluid with parents passing forward and backward
as their individual adjustment process allows. Each parent
will react in his or her own unique way.

STAGES OF PARENTAL REACTION TO DISABILITY

By Gargiulo(1985)

Primary phasephase
Secondary Tertiary phase
Ambivalence Bargaining
Shock Guilt
Adaptation and
DenialAnger
Reorganization
Grief Shame
and Depression
and Embarassment
Acceptance
and Adjustment

T i m e
The initial response is often one of shock and disbilief; parents
are poorly prepared, in most instances escape for the news of
their child’s disability. Parents will sometimes evidence denial
as a form of escape from the reality. The primary phase is also
characterized by grief, as parents mourn the loss of their “ideal
child” or “perfect baby.”Depression and withdrawal are
common consequences of the grieving process.