ch6 Flashcards
A changing era…
Families have become
more empowered over the
years to advocate for
children with disabilities
▪ Families are the most
constant sources of
support
▪ Professionals are better
able to provide family and
home-based services
▪ Family=social ecological
system
Family Systems Approach
-Early studies looked to study
only parts of the family, not the
family as a whole
* Families influence each other
* Family is interconnected parts
* Olson Circumplex Model
* flexibility
* cohesion
* communication skills
Positive Impacts
communication skills
positive family relations
child serves as source of
unity
outlook on life more
positive
Challenges for families
financial pressures
Greater stress about quality of life
search for adequate services
Understanding families
The birth of an infant with significant disabilities has a profound
impact on the family
Parents of children with disabilities appear to experience
common feelings and reactions but they often differ in terms of intensity, relationship to specific stages, and the eventual adjustment made individually and as a family
Some diagnoses come much later when the child does not reach
milestones or even once in school
Stages of response - Shock
▪ Parents may need assistance, yet most find the least amount of
help available.
▪ Reactions will depend on psychological makeup, the types of
assistance rendered, and the nature and severity of the disabling
condition.
▪ Parents may be unable to process or comprehend information
provided by medical or other health related personnel.
▪ Parents may experience the greatest assaults on their self worth
and value systems.
Stages of response - Realization
▪ Parents come to understand the actual demands and constraints that
will come with raising their child with a disability
▪ This stage is characterized by several types of parental behavior
Stages of response –
Retreat
▪ Parents attempt to avoid dealing with the
anxiety-producing realities of their child’s
condition.
▪ Begin to embrace coping strategies
Stages of response – Retreat
cont.
They may try to solve their dilemma in one of
two ways:
▪ Seeking placement for the child in a clinic,
institution, or residential setting
▪ Disappearing or retreating to a safer and less
demanding environment, away from family
and friends
Stages of response - Acknowledgment
▪ Parents are able to mobilize their strengths to
confront the conditions created by having a child who is exceptional.
Parents …
▪become capable of involving themselves in the
intervention and treatment process.
▪are better able to comprehend information or
directions
▪become interested in joining organizations
▪begin to accept the child with the disability
Family characteristics and
interactions - Mother
▪ Often the mother experiences the most trauma and strain
▪ Responses may vary according to cultural background and related beliefs about children with disabilities
▪ A child with a disability deserves attention and support no matter what type of family unit the child is a part of
Family characteristics and
interactions - Spousal Relationships
Relationships may lose
their quality and intensity
▪ Important physical and
psychological support
provided by fathers
▪ Problem focused coping
Spousal Relationships cont.
▪Marital Distress: respite care
▪Time, financial, and social stresses
▪Research is limited and contradictory though
recent research suggests a detectable negative
impact on marital adjustment, but one that is
smaller than might be anticipated
Mother-Child Relationships
▪ Impairment is congenital and readily apparent at birth
▪ Mother primary person to attend to needs
▪ Infant is premature or needs extensive early medical
treatment
▪ Mother may be prevented from daily care – affects attachment, bond
▪ Dydactic & Birelational
Mother may be forced into a close
physical and emotional relationship with
her son or daughter with a disability
▪ Mothers’ expectations play a significant
role in the preparation for adulthood and
independence
Father- Child Relationships
- Internalization of their feelings
- Concern about child’s social, educational, and career
status - Visibility and severity of the disability
- Speaking or interacting with words and phrases
- The gender of the child
father
- When fathers withdraw or remain uninvolved, it often = stress
- Father’s involvement results in better performance in
school and with behavior
Sibshops
◦ Nationwide support system
◦ Provides young siblings with peer support and information in a lively,
recreational setting
◦ Locally- Down Syndrome Center Central California
Sibling Relationships
▪ 6.5 million children in the US have a sibling with
a disability
▪ Siblings want to know and understand as much as
possible about the condition of their sibling. They
want to know how they should respond and what
the impact will be on their lives
* Siblings tend to mirror the attitudes and
behaviors of their parents
* Generally, siblings have positive feelings
* Siblings can be a real source of support
Sibling Relationships
∗ Negative feelings do exist among siblings of
children with disabilities
∗ May resent attention and time to sibling
∗ May feel the need to compensate for sibling
Extended Family Relationships
▪ Grandparent’s reaction plays an influential role on how
parents respond
▪ Grandparents and other family members can help the
primary family unit
▪ Grandparents can provide a reprieve
▪ Millions of children with disabilities
live with their grandparents as primary
caregiver
Parent-Child Relationships
Developmental sequence in responding to
child’s needs
∗ Time parents learn of disability
∗ Period in child’s life relative to education needs
∗ After child completes own education
∗ After parents are older and cannot care for child
Multidisciplinary collaboration
and family-centered support
▪ Focus on the strengths and capabilities of the
family
▪ Encourage them to take the lead in establishing
and pursuing priorities
▪ Not a “fix and serve” model
▪ Family is constant and the intervention setting is
temporary
Collaborating with professionals
▪ Positive behavior support (PBS)
▪ Effective collaboration
▪ Strong family support programs help keep families
together and reduce the need for out-of-home placements
Collaborative training for
parents, families, and professionals
IDEA - parent training focuses on helping
parents to acquire the essential skills that will help them in implementing their child’s IEP or IFSP
Early Childhood years
▪ Services are directed at complex and varied needs
▪ Focused on specific strategies
▪ Provide information about legal rights
▪ Prepare parents to participate effectively in IEP
meetings
▪ Increase family empowerment
Elementary School Years
∗Training parents on IEP process
∗Secondary School years
∗relationships w/ those outside home
∗students participate in IEP meetings
∗Adult years
∗self-regulation, self-realization, autonomy
Successful Partnerships
∗ Establish trust and respect
∗ Empower families
∗ Family cohesion and organization are
beneficial
∗ Keeping family together
∗ help them meet needs of individual with
disability
Training for Families
∗ Focused on essential skills to care for child
∗ Not just to child
∗ General parenting skills
∗ feeding, language/motor development,
employment
∗ Accessing adult services
∗ learn to promote growth and development
∗ effective problem solving
Training for Others
- Siblings, grandparents, extended family
∗ Help provide consistent respite care
∗ Need information about type and possible
course
∗ Learn about family culture interact
appropriately
Cultural perspectives for pros
◦ Responses of siblings and the family unit varies depending
on cultural backgrounds
◦ Professionals need to be aware of different meanings
parents assignt to disabilities
◦ Well trained interpreters essential!
◦ Trust and respect=better outcomes for all
