Families with Children with Chronic Illness or Disabilities

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Families with Children with Chronic Illness or
Disabilities

• Linda S. Heath
• N422

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What do you think of when you talk about a child
with special needs, or a child with a chronic
illness?
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Words
Chronic of long duration Special distinctive,
exceptional, Disability incapacity, handicap
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Changing Trends

• 1975 PL 99-142-Education for all Handicapped
  Children Act
• President Ford
• Ages 3-21 years, offered educational
  opportunities
• PL 101-476-Individuals with Disabilities
  Education Act (1990)
• 1986 PL 99-457
• 0-3 years
• Individual Education Plans (IEP)
• Technological Advances

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Parental Responses to Illness or Disability
Dependent
Guilt
Resentful
Fear
Insecure
Angry
Hostile
Overprotective
Frustrated
Permissive
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Family Centered Approach Developmental Approach

• Infancy
• Toddlerhood
• Preschool
• SchoolAge
• Adolescence

• Trust
• Autonomy
• Initiative
• Industry/Accomplishment
• Identity

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Assessing Family Strengths

• Available Support Systems
• Perception of the illness/disability
• Coping Mechanisms
• Available Resources
• Concurrent Stresses

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Tasks of Parents of Children with Chronic
Conditions
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Accepting the Childs Condition
Its not the hand youre dealt, but how you play
your cards
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Managing Day-to-Day

• Constant Attention
• Details/preplanning
• Rxns of other children
• Social Relationships
• Effects on Siblings
• Marital Relationships

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Meeting the Childs Normal Developmental Needs
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Meeting Developmental needs of others in the
Family

• Sibling issues
• Parental roles
• Single parenting
• Normalcy
• Extended family

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Alex Is Pretty Neat!by Anna Pettus I have a
brother named Alex. He has Down syndrome. Down
syndrome is when someone looks a little different
and is a little late in learning things. I can
think of a lot of words to describe Alex
different, loving, and special! I am going to
tell you more about Alex. Alex is 7-years-old,
even though he looks like he is younger. He was
born on December 29, 1993, which is four days
after Christmas. Alex is in first grade in my
school. A lot of kids in my class think Alex is
pretty neat. Alex knows his A,B,C's and how to
count to twenty. He loves to swim, ice skate, and
play baseball, too.
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Our yellow Labrador, Jake, is a great buddy to
Alex. They are like playmates. This summer Alex
and I went to a water park with some friends. We
went down the water slides and rode the go-carts.
We even played miniature golf. We had a ball! We
also went bowling as a family. Daddy started to
teach Alex, but then he got tired. Then I tried
to teach him, and her learned how to hold the
ball. Alex and I are like normal brothers and
sisters because we fight sometimes. We like doing
things together, and we are good friends. I think
I have a better relationship with Alex than if he
were nondisabled. I like that he follows me
around and copies everything I do.
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No matter what my brother looks like, or if he
has a disability, I will always love Alex just
the same. Anna, 10, and Alex live in Dalton,
Massachusetts
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Coping with ongoing stress and Periodic Crises

• How is the family affected with this ongoing
  stress?
• How do they react when there is an exacerbation?
• How do families endure this?
• What are their coping mechanisms

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Assisting Family Members in Managing their
Feelings
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Establishing a Support System
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www.exceptionalparent.com
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