A changing era in lives of people with disabilities:
- Care takers are making parents more included in the partnership as families are the primary caregivers,
suport for the child with disabilities. Also it helps build better relationship with the family.
- Learning that child is disabled is heart wrenching
- Parents may react with disappointment, anger, guilt etc. Many parents and families have developed coping
skills, enhancing their well being and allowing them to take better care of the disabled child. Many families
become resilient and adapt well to having a disabled child.
- Humour plays a great role in ridding the negative emotion, stress and allows the family to connect with one
Unique and Diverse Challenges:
- Disabled children pose unique and diverse challenges that can either put the family in crisis (major conflicts
among members) or bring the family members closer. This happens due to the added and unexpected
emotional, physical and financial demands.
- Factors that affect the reaction of families: emotional stability of family, religious values and beliefs, cultural
perspectives and values, socioeconomic status , severity and type of child's disability.
A Social/ Ecological Approach:
- Social/ Ecological system: A system that provides structure for understanding human interactions,, defining
roles, establishing goals for behaviour and specifying responsibilities in a social environment.
- Ecocultural: Descriptive term that combines ecological and cultural elements to identify factors that
influence family functioning such as unemployment, family's primary language, country of origin traditions
and so on.
- This approach studies role and expectations of society and how it affects on the families with disabled
children. It studies the ecocultural (influences of environment and culture) that impact the child with disability
and their family.
- This model indicates that family members are interdependent on one another and how change in one family
member can affect every other family member.
- According to this model, families with disabled children experience greater stress and have more concerns
about the quality of life due to the issues mentioned above ( financial, emotional, physical reasons). When the
parents discover that their infant suffers so and so identifiable disability and that their child is not a dream or
"normal" they go into an emotional shock/ disequillibrium.
FIVE WAYS IN WHICH FAMILY RESPOND TO DISABILITY
Stages of Adjustment
1) Determining a Diagnosis:
- Some disability can be diagnosed before birth (spina bifilda, Down syndrome) while some after birth.
Sometimes even after visiting physicians and doctors many times, they might have doubts but the parents
would not know about that until the tests confirm. The wait can get agonizing.
-When told, parents react with shock, frustration, disappointment, sadness, anger, guilt, feeling trapped,
numbness etc. Some parents treat it with grief as if a family member has passed away. These negative feelings
may be triggered when the child posses health and behavioural challenges.
-Feelings are mutual but the response to the challenges and adjustments vary hence it is not fair to say that
the stage model of adjustments will firmly determine the response that parents will show. It can just help
predict. Emotions at different identifiable stages may come up at different stages like emotions expected to
come in stage two may arise in stage one or the emotions that have already arisen may repeat even after that
stage is crossed. Some parents react with sorry and then cope with that sorrow while the others may react
positively and cope and support better.
2) Experiencing Shock:
- Initial emotion is shock accompanied by guilt, anger, denial, despair...etc. Some parents have the feeling of
grief, detachment, bewilderment, bereavement. Parents in most need get some help at this time. - Their psychological makeup determine how the parents react to the challenges in this period. The reaction is
also influenced by the types of support available, cultural beliefs, type and severity of disability. Many parents
move away from being victims to the survivors of trauma after some time.
- Parents might not be able to understand medical instructions provided by the professional due to shock so
sometimes the instructions are given later on. Parents question their self worth and belief system at this time.
The purpose of life changes and so they have to re-plan the rest of their life.
3) Coming to Realization:
- Parents may show varying behaviour. Some parents may worry about their ability to cope with the constant
demands and needs of the child. They may get easily upset and may still spend some time self blaming, self
pitying and self hating. Doctor's instructions still might not make sense to them but at this stage they come to
understand the kind of challenges they may face from their disabled child.
4) Moving Away from Retreat:
- Parents try to stay away from stress-inducing or producing situations. Some seek placement for the child in
clinical and residential settings while others move away for a while in a less demanding environment (mother
who drove for hours after being discharged. She didn't want to face extended family).
5) Coming to Acknowledgement:
- Parents have a better attitude. They begin to direct their energy, resources, strengths and skills to face the
challenges brought on by the child's disability. They also search for resource and intervention programs where
they can talk about their child's needs. Health care instructions are now comprehended well by the parents.
THREE WAYS IN WHICH A DISABLED NEW BORN INFLUENCES THE FAMILY SOCIAL/ECOLOGICAL
Family Characteristics and Roles:
When a child has some sort of disability, it influences how the members in the family respond to one another.
Mostly, mothers face the most trauma and strain. She might not be able to do things she used to do and also
her attention to other kids may also greatly reduce. This is when the daughters in the family assume roles
mother used to do.
Cultures and Disability Perspective:
-Responses of siblings and extended family members vary culturally. Culture shapes how individual's disability
is viewed, treated and reared by parents and families.
-Teachers and care providers will have to be sensitive towards the issues related to the child rearing practices,
relgious beliefs, cultural perspectives and family's view about the role of education. Greater efforts must be
made to find an interpreter to eliminate a communication gap between the family and the teacher while
preparing individualized family service plans (IFSP) and Individual Education Plans (IEPs) and also to learn how
to do home visits and to become proficient in working with the family.
Working with All Families:
- Children with disabilities are often raised by foster parents, single parents, parents in blended families,
grandparents, lesbian and gay couples. Almost half a million children are cared for through various state social
services organizations and services which is why the support workers must know how to work respectfully
with these families, meeting their needs and their child's unique needs.
- The child with disabilities deserves and requires support and attention from professionals regardless of
family structure. It is the job of support workers to do so and in the process keep the parents involved.
THREE ASPECTS IN RAISING DISABLED CHILD CAUSING SPOUSAL STRESS:
Spousal Relationships: Some families face extreme turmoil that may eventually lead to divorce while others
continue to have the joy and happiness in life like normal. Recent studies suggest that the overall detectable
impact of having a disabled child is much less than is popular.
- Especially for mothers, when there is a disabled child, its hard to achieve balance between the time spent
with husband and the child. Potentially the mother spends more time with the disabled child than the
husband which can create gaps and feeling of neglect, dissatisfaction, loss among some fathers. Husband Support and Involvement:
- Husbands who assist the wives in taking care of the disabled child serve to the well being and resilience of
their spouse. They psychological and physical support means a lot to their spouses. It gives them couple
centred satisfaction and contentment. Husbands who are involved face the same sort of problems in rearing a
disabled child that his spouse faces hence he is able to understand and make appropriate and successful
- The emotion of stress and fear come in way of how couples operate and communicate which is why we have
respite care (assistance provided by someone outside the family to give the family some time away from the
child with disability). The respite care programs allow the make up for the time that was supposed to be for
spouse and the kids. it also gives the couple the time off to relax.
FOUR FACTORS THAT INFLUENCE RELATIONSHIP THAT DEVELOPS BETWEEN INFANT WITH DISABILITY AND
- When a child is born with some disability it is the mothers that are the primary caregivers and they become
instantly super responsible in doing so, infact they have to give more care than usual. It is especially hard for
those moms who have more than one child with disability.
-Dyadic Relationship are those in which the mother and the child form a significant affiliation over time. It
results in close ties between child and mom. This strong bond may allow the disabled child to communicate
his or her needs just to the mom than the rest of the family members. In such families, the dyadic relationship
forms between older siblings and younger siblings as the mother is no longer present to give them most of