Chapter 6:

Exceptionalities and
Families
ED315-ON01: Trixia & Shanshan
 Bellwork
Think about a family you know where there's a child with a
disability. How did they deal with tough times and make the most
of good times? How did everyone in the family work
together? Did they get help from teachers or doctors? How
could teachers or doctors help families like this even more?
Student Learning Objectives (SLO’s)

01 Describe how the lives of families with children with disabilities have changed since the
advent of IDEA.

Describe the family systems approach and how it applies to families with members with
02 disabilities, and describe the strengths and challenges of families raising children with
disabilities.

03 Describe factors that influence the relationship between children with disabilities and
their mothers, fathers, siblings, grandparents, and other extended family members.

04 Describe factors that influence the relationship between children with disabilities and
their mothers, fathers, siblings, grandparents, and other extended family members.

Describe essential behaviors that nurturing and competent professionals exhibit when
05 interacting with families with children with disabilities.
 6.1
A Changing Era in
the Lives of People
with Disabilities
 Individuals with Disabilities
Education Act (IDEA)
Before IDEA in 1975, families with kids who had
disabilities faced big challenges. These kids often
couldn't go to school because schools didn't let them.

IDEA changed things a lot for families with kids who

had disabilities. It gave them important rights they
didn't have before. Now, these kids could go to school
like everyone else. IDEA showed that people with
disabilities deserved the same opportunities as
everyone else. Families became stronger and fought
for their kids' rights.
 Individuals with
Disabilities Education
Act (IDEA) cont.

Families with kids who had disabilities started to

become stronger over time. IDEA and other laws
helped them stand up for their kids. They became
better at speaking up for their kids and making
sure they got what they needed. Families became
really important in helping their kids succeed.

Teachers and other professionals who work with

kids who have disabilities also got better at their
jobs. They learned more about how to help these
kids and their families. They started working more
closely with families to make sure kids got the
right support.
 6.2
Family Systems
Approach
 Family Systems Approach
Family systems approach: In selecting and providing interventions, training, support,
and care, every aspect, element, function, and role within the family structure is
thoroughly assessed and taken into account
● Recognizes the bidirectional influence of each family member on each other
and on the family as a whole

Olson Circumplex Model: defines family interactions with three central variables:
flexibility, cohesion, and communication skills
● Family members with good communication skills and manifest flexibility and
cohesion, are more likely to function in healthy and helpful ways
○ Too much flexibility leads to chaos
○ Too much rigidity leads to authoritarian leadership
○ Too much cohesion. Or emotional bonding, leads to enmeshed
families (overly involved )
Social/Ecological Model:
Spheres of Influence
- Research shows the family
as a system of
interconnected parts that
affect one another and the
family as whole
 Positive Impacts of Children with
Disabilities on Their Families
Presence of children with disabilities in families creates:
● Growth in siblings and parents
○ Evidenced in improved levels of empathy, coping skills,
patience, communication skills, positive family relations,
greater emotional and psychological strength
● Unity that bonds family members together and strengthens
their relationship
○ Higher levels of marital happiness
○ Fathers have higher levels of self-acceptance and better
adjustment
○ Mothers grow more compassionate, selfless, and resilient
Families use humor alleviate negative emotions and stress
Family Challenges Related to
Raising Children with Disabilities
Children with disabilities in families present unique challenges, such as:
● Financial pressures
● Strained relationships with family members
● Altered social relationships with friends
● Physical and health problems
● Impacts family social systems
○ Parents may feel shock, fear, anger when learning of the
disability in their children
○ Children with disabilities who are violent, disruptive, or
aggressive may challenge family members
○ Families may experience greater stress and more intense
concerns about their quality of life
 Family Challenges Related to
Raising Children with Disabilities

Families worry about:

○ financial well being, emotional health, social well-being, family
interaction, parenting skills, and the challenges of other
co-occurring disabilities in their children, particularly
behavior problems
Families report difficulties with accessing services
● Quality care, insurance coverage, shared decision making,
caregiving responsibilities
● Extreme cases include house instability, diminished access to
health care, etc.
 6.3
Parental Reactions
Discovery of disabilities in children may greatly
affect families
Parents may feel a general state of shock
from unexpected news.
Determining a Diagnosis

Some disabilities are apparent at birth, while others may not be immediately
detectable. The process of obtaining a diagnosis can be agonizing for parents,
especially when conditions are not immediately evident. Responses to receiving a
diagnosis of disability vary among parents, with some experiencing negative
feelings for extended periods. Children with certain disabilities, such as ADHD or
learning disabilities, may not be diagnosed until they begin struggling in school.

Patience, open communication, and positive support are essential for

parents and professionals dealing with disability diagnoses. Each parent's
adjustment process to their child's disability is unique, with no consistent
pattern or sequence of stages. Emotions associated with adjustment may
overlap and resurface over time. The adjustment process for parents is
continuous and individualized.
 Experiencing Shock
● The initial response to the birth of a child with a
disability involves shock, anxiety, guilt, confusion,
and other intense emotions.
● Parents may experience grief, detachment, or
bereavement upon receiving the diagnosis.
● Processing information from healthcare
professionals may be challenging during this period.
● Parents may start questioning themselves and
their lives.
○ Reactions vary based on psychological
makeup, available support, cultural beliefs, and
the nature of the disability.
 Experiencing Shock
● Over time, many parents transition from feeling
like victims to becoming survivors of the initial
trauma.
● Depression and mourning are common reactions,
similar to grieving the loss of a loved one.
● Parents may experience ongoing feelings of
inadequacy and sorrow as they adjust to their
child's disability.
● Cognitive coping strategies can help parents
manage their emotions and improve their overall
functioning.
 Coming to a Realization
● Parents may experience anxiety and fear about their ability to
care for a child with a disability.
● They might display irritability, self-accusation, self-pity, or
self-hatred.
● Some parents may reject or deny information from medical
personnel.
● This stage marks the beginning of parents' understanding of the
challenges involved in raising a child with a disability.
 Moving away from Retreat

● During the "defensive retreat" stage, parents try to avoid

confronting the anxiety-inducing aspects of their child's
condition.
● Over time and with support, parents transition to embracing
coping strategies.
● Coping strategies may include problem-solving, seeking
professional support, gathering relevant information, and
seeking support from various sources like family, friends,
and advocacy groups.
● Other parents who have children with disabilities can play a
significant role in providing support and helping parents
reframe their challenges in a more positive light.
 Coming to Acknowledgment

● The "Acknowledgment" stage involves parents utilizing their

strengths and skills to address the challenges of having a child
with a disability.
● Parents become more engaged in interventions and treatments
during this stage.
● They improve their ability to understand information from
care providers.
● Some parents join advocacy groups to aid in their adjustment
process.
● Parents start accepting their child with the disability and focus
on addressing their challenges while leveraging their strengths.
 6.4
Family Relationships
Many relationships may be affected
when caring for a family member
with a disability

Spousal or 03 Father-Child
Partner 01

04 Sibling

Mother-child 02
05 Father-Child
6.4a Spousal or Partner Relationships
● Impact on Marital Adjustment
➢ Varied experiences, with some families facing extreme turmoil and others enjoying
typical marital joys (McCarthy et al., 2006).
➢ Detectable negative impact on marital adjustment, but smaller than expected,
challenging earlier assumptions (Risdal & Singer, 2004).

● Parental Self-Efficacy
➢ High parent self-efficacy benefits children with disabilities, positively impacting
behavior and development (Boyraz & Sayger, 2011; Dyches et al., 2012).
➢ Contributes to overall family well-being and cohesiveness.
 ● Challenges Faced by Mothers

➢ Imbalance between motherhood and spousal roles due to intensive care

for the child with disabilities.
➢ Feelings of loss and neglect experienced by some fathers (Boström &
Broberg, 2014).

● Husband Support and Involvement

➢ Husbands who providing physical and psychological support contribute to

well-being and resilience (Rummel-Hudson, 2008; Simmerman, Blacher, &
Baker, 2001).
➢ Problem-focused coping leads to higher marital adjustment and life
satisfaction (Stoneman & Gavidia-Payne, 2006).
Marital Distress and Respite Care

● Marital Distress

➢ Fear, anger, guilt, and resentment often interfere with a couple’s

capacity to communicate and seek realistic solutions.

● Respite Care Program

➢ Assistance provided by individuals outside of the immediate family to give parents

and other children time away from the child with a disability
 6.4b Mother-Child Relationship
Mothers hold a significant role in shaping the lives of children with
disabilities, navigating dyadic relationships, and addressing challenges like
overprotectiveness to foster independence and optimal development.

● Dyadic and Bidirectional Relationships:

➢ Dyadic Bonds: Mothers often develop strong dyadic relationships
characterized by exceptionally close ties with their children with
disabilities (Hauser-Cram, 2006).
➢ Bidirectional Impact: Relationships are bidirectional, where both the child
and the mother influence each other positively and negatively.
➢ Sibling Dynamics: Dyadic relationships may extend to siblings, with certain
siblings providing support and nurturing, impacting family dynamics
(Burbidge & Minnes, 2014).
 ● Overprotectiveness and Long-Term Vision:

➢ Tightrope of Overprotectiveness: Mothers may face the

challenge of being overprotective, potentially denying
opportunities for skill development and independence (Larson,
2000).
➢ Impact on Independence: Balancing the tendency to
underestimate or overestimate a child's capacities can influence
their participation in challenging activities.
➢ Long-Term Vision: The mother's vision for her child dramatically
influences preparation for adulthood, with overprotectiveness
potentially hindering readiness for independent living.
 6.4c Father-Child Relationships

Historically, fathers were more reserved, but recent

trends show active engagement and experience similar
emotional outcomes as mothers due to increased
caregiving roles
 Responses of Fathers
➢ Differing Engagement: Fathers respond uniquely to challenges, especially
concerning behavior problems (McCarthy et al., 2006).
➢ Concerns for Boys: Fathers of children with intellectual disabilities express
heightened concerns for social and educational development, particularly for
boys.
➢ Visibility Matters: Fathers' involvement is influenced by the visibility and
severity of their children's conditions (Lamb & Meyer, 1991; Wang et al., 2004).

Training Preferences of Fathers

➢ Family-Centric Learning: Fathers prefer family-focused learning activities
over individualized events (Turbiville & Marquis, 2001).
➢ Learning Focus: Priorities include encouraging learning, fostering language
development, and promoting various skills (Johnson, 2000).
➢ Importance of Support: Support for fathers in developing closer
relationships contributes significantly to their children's development and
self-esteem (Boström & Broberg, 2014).
 6.4d Sibling
Relationships
 ● Over 6.5 million children in the U.S. have a sibling with a disability; their
experiences are often parallel to those in families without disabilities.

● Sibling relationships endure through various life stages, offering consistent

support.
● Behavior problems in the child with a disability may contribute to negative
impacts on siblings.

● Some siblings may feel neglected, harbor resentment, or experience jealousy

due to parental attention to the sibling with a disability.
● Positive Perspectives:
➢ Siblings actively involved in assisting a sibling with a disability become significant
sources of support
➢ Many siblings contribute to the intellectual, social, and cognitive development
of their siblings with disabilities.
6.4e Extended Family Relationships

● Grandparents ● Support for

➢ Influence on Parents: Crucial in
shaping parents' response to a
child's disability.
➢ Emotional Impact: Supportive
grandparents positively contribute
to the family's well-being.
Grandparents
➢ Enhance overall family happiness
and positively impact paternal
adjustment.
➢ Provide essential respite care,
financial assistance, and special
needs trusts.

● Challenges faced by Grandparents

➢ Millions of children with disabilities live with grandparents as primary caregivers
➢ These grandparents struggle with depression, stress, and housing-related issues,
requiring respite care.
 6.5
Providing Nurturing and
Competent Family
Support
 DEVELOPMENTAL PHASES
IN FAMILY RESPONSE

Discovery of Completion of
Disability: Education:
Parents learn or The individual with a disability
suspect a disability. finishes their education.

Educational Transition to
Planning: Adulthood:
Parents make plans for Parents, now older, may face
the child's education. challenges in caring for their adult
offspring.
 6.5a Family-Centered
Support, Services, and
Programs

Family-centered support,
services, and programs
encourage families to take the
lead in establishing and pursuing
their priorities
 6.5b Early Childhood Years
● Family-centered support during early childhood involves delivering
appropriate services, addressing behavior issues, and fostering
understanding of the child’s disability
● It focuses on enhancing family capacity through effective
communication, home routines, and tailored assistance for promoting
the child’s development and addressing specific health conditions.

6.5c Elementary School Years

● Parents are concerned about their children’s academic achievement,
social relationships, and the appropriateness of instructional programs
in inclusive settings.
● Effective collaboration between parents and multidisciplinary teams is
crucial for achieving individualized education program(IEP) goals, but
many parents find the IEP process intimidating and may feel unskilled
or passive in decision-making.
 6.5d Secondary School Years
● During the secondary school years, adolescents with disabilities, their parents, and
families face challenges related to emerging sexuality, developing social skills, and
achieving appropriate independence.
● Parents emphasize the importance of academic achievement while also seeking
the development of essential social and character skills in their adolescents,
addressing issues like employment preparation, self-regulation, access to adult
services, and community living skills.

6.5e Transition to the Adult Years

● The transition to adulthood for adolescents with disabilities involves strategic
planning through the IEP process, focusing on skills for community success and
adult functioning.
● Parents and caregivers play a crucial role in supporting independence while
acknowledging potential challenges to their adult children’s autonomy.
 6-5f: Parents, Families, and Partnerships acknowledge challenges in interactions
between professionals, parents, and families, emphasizing the potential for significant
improvement through enhanced partnerships and emotional support for parents.

G. Strengthening H. Positive Behavior I. Element of

Family Support Support Successful
Partnerships
emphasizes the involves collaborative
importance of efforts to instill valued highlight key aspects
such as trust,
supporting families behaviors, focusing on
empowerment, sensitivity,
directly and avoiding functional positive and understanding of
services that replace behaviors at home, family dynamics,
family efforts. school, and in the contributing to the
community. overall well-being of
families with children with
disabilities.
 Training for different groups of people
● Acquiring skills for implementing Individualized Education Program
(IEP).
Families ● Focus on general parenting skills, accessing adult services, and
legal planning.

Siblings, ● Addressing siblings’ emotional needs and providing understanding

Grandparents, of disabilities.
Extended Family ● Exploring family roles and preparing for potential challenges.
● Conducted through group like “Sibshops.”
Members

● Collaborative training for educators, social worker,

psychologists, and healthcare professionals.
● Focus on building positive relationships, collaborating effectively,
Professionals and understanding cross-cultural matters.
● Provides meaningful instruction and support to improve the
quality of life for families with children with disabilities.
 6.5m Cultures and Disability
Perspectives for Professionals

Professionals should
● actively learn about diverse cultural
backgrounds, gaining awareness of
child-rearing practices, religious beliefs, and
perspectives on education.
● Build skills in cross-cultural communication
to establish rust and respect.
● Be proficiency in home visits and connecting
with families from different cultural
backgrounds.
 Main Activity
For this activity, visualize yourself as a parent of a
special needs student. Name three different ways you
could support your child emotionally. Name one way you
could build a loving relationship with your child.
 Assessment

1. What Act gave children What model defines family

2. interactions with three
with disabilities rights and
central variables: flexibility,
opportunities to attend cohesion, and
school normally? communication skills?

3. Name an initial
response to the birth
of a child with a
disability.
4. What relationships 5. When are Parents are 6. Name one challenge
may be affected when concerned about their children’s
academic achievement, social grandparents face
caring for a family
member with a disability? relationships, and the with having a
appropriateness of instructional
(There are 5) programs in inclusive settings.?
disabled grandchild.
 Thank you!
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