EXCEPTIONALITIES AND FAMILIES
Unique and Diverse Challenges
Family relationships may be weakened by added and unexpected physical, emotional, and financial demands or the child
may be a source of unity that bonds family members together and strengthens their relationships.
-Reactions of families are influenced by the emotional stability of the family, religious values and beliefs, cultural
perspectives and values, socioeconomic status, as well as the severity and type of the child's disability.
In the US, 28% of children with disabilities live in poverty and experience hunger, housing instability, diminished access
to health care and other things.
A Social/Ecological Approach
Social/ecological system: system that provides structure for understanding human interactions, defining roles,
establishing goals for behaviour, and specifying responsibilities in a social environment.
-Examines how each family member fulfills roles consistent with expectations established by discussion,
traditions, cultures, beliefs, or other means. In the process, each family member functions interdependently with other
family members to achieve collective and individual goals
Ecocultural: Descriptive term that combines ecological and cultural elements to identify factors that influence family
functioning, such as unemployment, the family's primary language, the country-of-origin traditions, and so on.
Social/ecological system examines the ecocultural and socioeconomic factors that negatively affect children with
disabilities and their families.
-This makes it easy to see how changes in one family member can affect every other member and the entire
Families with children with disabilities face concerns to factors like financial well-being, emotional health, social well-
being, family interaction, parenting skills, and the presence of other co-occurring disabilities in their children,
particularly behaviour problems
Determining a Diagnosis
Spina bifida: developmental defect of the spinal column
Down syndrome: condition caused by a chromosomal abnormality that results in unique physical characteristics and
varying degrees of mental retardation
Physical problems are apparent at or before birth but hearing and learning disabilities are not immediately detectable.
Reactions to children with disabilities is generally shock and things like disappointment, sadness, loneliness, fear, anger,
frustration, devastation, numbness, uncertainty, and a sense of being trapped.
-Another reaction is depression, often exhibited in the form of grief or mourning. Also recurrent sorrow and
frequent feelings of inadequacy.
Stage approach: helps think about the ways in which parents and others might respond to an infant or child with a
disability over time. Some parents may go through distinct periods of adjustment while others may adjust without
passing through any identifiable stages.
-Process of adjustment is continuous and uniquely individual
Some parents, siblings and relatives of children with disabilities employ a kind of cognitive coping that enables them to
think about the child, sibling, or grandchild with a disability in ways that enhance their sense of well-being and increase
their capacity for responding positively to the child. Four Stages
1. Experiencing Shock
Parents sometimes have feelings of grief, detachment, bewilderment or bereavement. Parents also need support.
During initial shock, parents may be unable to process or comprehend information so information may need to be
communicated later to parents- sometimes several times over. Parents may experience major decreases in self-worth
and belief systems and may blame themselves.
-May be forced to reassess the meaning of their lives, the reasons for their present challenges and how they will
2. Coming to a Realization
Characterized by several types of behaviour- parents can be anxious or fearful about their ability to cope with the
demands of caring for a child with unique needs.
-They may be easily irritated or upset and spend a lot of time in self-accusation, self-pity, or self-hatred. They
may continue to reject or deny information provided by care providers and medical personnel.
Parents do come to understand the actual demands and constraints that will come with raising a child or youth with a
3. Moving Away from Retreat
Defensive retreat stage: parents attempt to avoid dealing with the anxiety-producing realities of their child's condition.
-Some try to solve their dilemma by seeking placement for the child in a clinic setting, other parents disappear
for a while or retreat to safer and less demanding environments.
4. Coming to Acknowledgment
Stage where parents mobilize their strengths and skills to confront conditions created by having a child with a disability.
-Parents begin to involve themselves more fully in interventions and treatments. They are also better able to
comprehend information or directions provided by care providers.
Some parents join advocacy groups. Parents begin to accept the child with the disability.
During this stage, parents begin to direct their energies and inherent abilities to address their children's challenges and
capitalize on their strengths.
Family Characteristics and Roles
The presence of a child with a disability influences how family members respond to one another. Mothers feel the most
stress and if they draw away from responsibilities, other family members -usually daughters- often assume more
responsibility and new roles.
-Adjusting to new roles and routines may be difficult for some family members
Cultures and Disability Perspectives
Teachers and professionals need to be aware of different meanings that parents assign to disabilities. Greater efforts
must be directed at finding well-trained interpreters who play essential roles in helping parents and educators
understand one another as they develop individualized family service plans (IPSPs) and individualized education
plans (IEPs) for children and youth with disabilities
Working with All Families
Many children with disabilities are being raised by foster parents, single parents, parents of blended families, and
grandparents as well as by lesbian and gay couples. About half a million are cared for through various state social
services organizations and agencies.
Family natures vary but a common factor is the presence of a child with a disability; child deserves the attention and
support of school personnel and other professionals- regardless of the type of family unit to which he or she belongs. -The people who serve as primary caregivers or legal guardians of the child should be invited to participate fully
in all programs and support services.
Some families experience spousal turmoil often leading to separation and divorce while others experience the usual joys
and challenges of being married and being parents.
-Children with disabilities have a negative impact on parents well-being but it is not nearly as bad as they think
it will be.
An infant with a chronic health condition or disability may require more immediate and prolonged attention from the
mother. Her attention may become riveted on the life of the child with a disability.
-Balance between mother and spouse no longer exists. The mom may become so involved with caring for the
child that other relationships lose their quality and intensity.
Feelings of loss, neglect and dissatisfaction are typical for some others. Others become excessively involved with their
disabled children's lives, causing their partners to feel neglected.
Husband Support and Involvement
Mothers deeply involved in caregiving feel overworked, overwhelmed and in need of a break. Husbands who assist with
the child contribute to their partner's well-being and resilience.
-Day to day physical and psychological support provided by husbands is invaluable to mothers of children with
Support is also predictive of couple-centered satisfaction and contentment. Husbands who effectively employ problem-
focused coping, actively confronting stressful problems associated with rearing a child with disabilities, contribute to
higher marital adjustment and greater life satisfaction in their spouses.
Fear, anger, guilt, and resentment often interfere with a couple's capacity to communicate and seek realistic solutions.
Fatigue itself profoundly affects how couples function and communicate.
Respite care: assistance provided by individuals outside of the immediate family to give parents and other children
time away from the child with a disability
-Created by parents of children with disabilities to give them opportunities to get away from the demands and
stress of child rearing. These programs give couples opportunities to relax, renew and sustain their relationships.
Factors that contribute to stress: unusually heavy financial burdens for medical treatment or therapy; frequent visits to
treatment facilities; forgone time in couple-related activities; lost sleep and fatigue, particularly in the early years of the
child's life; and social isolation from relatives and friends.
If the infant is born prematurely or needs extensive, early medical assistance, the mother may be prevented from
engaging in the typical feeding and caregiving routines that bring about attachment and provide the foundation for
vitally important bonding.
Dyadic relationships: relationships involving 2 individuals who develop and maintain a significant affiliation over time;
characterized by very close ties between these children and their mothers
A child may use their mother as the exclusive channel for communicating needs and making requests. These can also
develop between other members of the family. Certain siblings may turn to each other for support and nurturing. Overprotectiveness
In the desire to protect their children, they may deny their children of opportunities to practice the skills and participate
in the activities that ultimately lead to independence. Mothers may also underestimate their children's capacities and
may be reluctant to allow them to engage in challenging activities.
-In contrast, other mothers may neglect their children with disabilities and not provide the stimulation so
critical to their most favourable development.
If mothers are overprotective, the results can be counterproductive when the child reaches late adolescence and is
unprepared for entry into adulthood or semi-independent living.
Responses of Fathers
Fathers are generally more reserved and guarded in expressing their feelings in contrast to other family members.
Fathers are more likely to internalize their feelings; they respond differently than mothers to the challenges and
stressors associated with caring for and rearing a child with a disability, particularly sons who display behaviour
Fathers of children with mental retardation are typically more concerned than mothers about their child's social
development and eventual educational status, particularly if they are boys. Fathers are more affected than mothers by
the visibility and severity of their children's conditions.