Transcript Parent Responses to the News of a Child’s Disability

EDU 221 Chapter 9
Partnership with Families
• Parents of exceptional children are in no sense
more "ready" than any other parents for the
demands for change and adjustment that
confront them with the birth of their child. Still,
they are often expected to be superhuman
beings with little or no guidance to suddenly cope
with strange and confusing feelings regarding
themselves and their child.
(Leo Buscaglia, 1994)
Working with Families of
Children with Special Needs
• Most parents know their child’s strengths &
needs.
• Promoting the child’s independence at
home, in child care, & in the community is
an important focus of families & child care
programs.
• Individual goals for the child should be
useful in the child care & home settings.
3.4
Serving Families
Family-Centered Focus
• Theories of child development tout it and
IDEA mandates it - the family's needs must
be at the center of early intervention
services.
• Strategies and programs must facilitate
family involvement. To do so, we must
understand the diversity of the families in
our society today.
• Today's early childhood professionals must learn
how to work with families as individuals, how to
communicate with families effectively, and how
to develop cultural self-awareness to understand
the ways our own beliefs influence our work
(Allen & Schwartz, 2001).
• No matter the family makeup, families with
children with disabilities will be impacted.
Parent Responses to News of
a Child’s Disability
•
“This can’t be! No one in my family ever had
mental retardation.”
•
“Perhaps I should have eaten different foods
when I was pregnant.”
•
“What does this doctor know? The child seems okay
to me. Let’s go see someone else.”
•
“Is there something wrong with my baby? The
doctor keeps saying everything will be just fine.
Why won’t she talk to me about this?”
3.1
• All families with children suffer from stress, but
families with children with disabilities are under
greater stress. Some will adapt and grow closer;
some will not adapt and the family will fall apart.
• Although most research about families is actually
about mothers of children with disabilities, we
must consider the impact on the whole family fathers, siblings, grandparents, and other
extended family members.
• Research suggests that children with disabilities
are more at risk for abuse than typically
developing children.
• Appropriate, adequate, and accessible supports
are important to ensuring the well-being of
families with children with disabilities.
Families do not expect to
have a child with a disability.
• Welcome to Holland
Leo Buscaglia (1994) describes the feelings
of parent of the child born with disabilities:
• Initial shock - correlated with the degree of
severity of the disability or the parents' initial
understanding of the severity.
• Mourning period - the perfect child they
anticipated is not coming and the realization
brings deep pain and hopelessness.
Grief Process
• Elisabeth Kübler-Ross, M.D. (July 8, 1926 –
August 24, 2004) was a Swiss-born psychiatrist
and the author of the groundbreaking book On
Death and Dying, where she first discussed what
is now known as the Kübler-Ross model
• proposed the Five Stages of Grief as a pattern of
phases, most or all of which people tend to go
through, in sequence, after being faced with the
tragedy of their own impending death.
Five Stages of Grief
• The five stages of grief, in sequential order, are:
 denial,
 anger,
 bargaining,
 depression, and
 acceptance.
• The five stages have since been adopted by
many as applying to the survivors of a loved
one's death, as well.
Five Stages of Grief
• The stages are:
• Denial : The initial stage: "It can't be
happening."
• Anger : "How dare you do this to me?!" (either
referring to God, oneself, or anybody perceived,
rightly or wrongly, as "responsible")
• Bargaining
graduate."
: "Just let me live to see my son
• Depression : "I'm so sad, why bother with
anything?"
• Acceptance : "I know that I will be
in a better place."
Five Stages of Grief
• Kübler-Ross originally applied these stages to
any form of catastrophic personal loss (job,
income, freedom).
• This also includes the death of a loved one and
divorce.
• Kübler-Ross also claimed these steps do not
necessarily come in order, nor are they all
experienced by all patients, though she stated a
person will always experience at least two.
Pearl Buck (1950) wrote in The Child Who Never Grew of her
first feelings when learning her daughter was born irreparably
mentally retarded:
To learn how to bear the inevitable sorrow is not easily done. I
can look back on it now, the lesson learned, and see the steps;
but when I was taking them they were hard indeed, each
apparently insurmountable. For in addition to the practical
problem of how to protect the child’s life, which may last beyond
the parent's, there is the problem of one's own self in misery. All
the brightness of life is gone, all the pride in parenthood. There is
more than pride gone, there is an actual sense of one's life being
cut off in the child. The stream of the generations is stopped.
Death would be far easier to bear, for death is final. What was is
no more. How often did I cry out in my heart that it would be
better if my child died! If that shocks you who have not known, it
will not shock those who do know. I would have welcomed death
for my child and would still welcome it, for then she would finally
be safe.
Parents’ feelings
• Blame - most mothers wonder what they did
wrong during the pregnancy, giving rise to
strong feelings of self-recrimination,
condemnation, and guilt.
• Shame - worry about what others think that lead
to feelings of unworthiness, sinfulness, and
disgust.
• Feelings of fear - naturally we fear what we do
not understand, what the future holds for the
child with disabilities, the child's safety and
happiness.
Helen Featherstone (1980) describes one
mother's fear for her child's future:
Sometimes I think I will die from hurting to think
of his future without us. For now he has love,
good health, happy times and lots of work
(therapy) to do. What does he have to look
forward to if he cannot improve, but a bed with
bad smells and only dimness of life around him?
(Golden, 1974)
Parents’ Feelings
• Feelings of uncertainty - the results for their
fears.
• Feeling the need for overcompensation - feign
joy and well-being to prove their strength
• Defense mechanisms - acceptance of feelings or
denial
• Featherstone (1980), a mother of a child with
disabilities, concluded that adjustment or
acceptance of a child's disabilities is not a linear
process.
“Actually the process is more complicated than
this. Contradictory feelings continue to coexist in
our consciousness...Few parents reach an
emotional promised land; most have good days
and bad days. They solve one set of problems
only to uncover another. Insight comes without
blotting out confusion and regret.”
Parents’ Feelings
• Parents need help working through feelings.
• Almost immediately they must make urgent
decisions and solve complicated problems.
• These problems may be compounded by social
isolation and poverty, putting the family's wellbeing at greater risk.
That the family needs to be at the center of early
intervention is imperative. Even more so is the
need to empower and enable families without
taking away their ability to cope.
• According to Allen and Schwartz (2001), "early
intervention aims to support and build on those
things the family already does well...by providing
families with the information and skills that will
enable them to try to solve their own problems
and meet their own needs. The service
coordinator plays the pivotal role in fostering and
overseeing the empowerment of families."
• Enabling families means creating opportunities
for family members to become more competent
and self-sustaining with respect to their abilities
to mobilize their social networks to get needs
met and attain goals.
• Empowering families means carrying out
intervention in a manner in which family
members acquire a sense of control over their
own developmental course as a result of their
own efforts to meet needs.
•
Whether a service coordinator, teacher, or
community-based childcare provider, your
relationship with the parents of a child with
disabilities is very important.
Parents and professionals are partners in the child's
development and learning.
•
Professionals approach parents the same way they
approach children: with respect and appreciation for
individual differences.
•
When parents and professionals communicate, children
experience a better learning environment.
“Be proud of your child, accept him as he is and
do not heed the words and stares of those who
do not know better. The child has a meaning for
you and for all children. You will find a joy you
cannot now suspect in fulfilling his life for and
with him. Lift up your head and go your
appointed way.”
(Pearl S. Buck, The Child Who Never Grew)
Confidentiality
Q: Why must confidentiality be maintained?
A: It is the Law
Q: What information do children & their
families have the right to be kept private?
A: The results of formal & informal
assessments
3.5
Confidentiality
Q: Who should have access to information
about a child & family?
A: Anyone who is responsible for planning &
providing services to the child & family
Q: Who should not have access to information
about a child & family?
A: Anyone who is not responsible for
planning or providing services to the
child & family
3.6
Guidelines for Services that are
Responsive to the needs of Families
• Take time to get to know the family
• Create a variety of opportunities for sharing
information
• Recognize the importance of the family as the
major constant factor in the child’s life
• Respect and accept family diversity
• Be nonjudgmental and sensitive toward the
family’s emotions
• Respect confidentiality
• Design flexible services
• Do not expect to meet all of the
family’s needs.