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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?
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
Parental Responses to Illness or Disability
Guilt
Fear
Overprotective
Resentful
Hostile
Insecure
Frustrated
Angry
Dependent
Permissive
Family Centered Approach& Developmental
Approach• Infancy• Toddlerhood• Preschool• SchoolAge• Adolescence
• Trust• Autonomy• Initiative• Industry/Accomplishment• Identity
Assessing Family Strengths
• Available Support Systems• Perception of the illness/disability• Coping Mechanisms• Available Resources• Concurrent Stresses
Tasks of Parents of Children with Chronic
ConditionsAccept the child’s condition
Managing the child on a day-to-day basis
Meet normal developmental needs
Meet developmental needs of family
Cope with ongoing stress and periodic crises
Help family members manage feelings
Educate others about child’s condition
Establish a support system
Managing Day-to-Day
• Constant Attention• Details/preplanning• Rxns of other
children• Social Relationships• Effects on Siblings• Marital Relationships
Meeting Developmental needs of others in the
Family• Sibling issues *• Parental roles• Single parenting• Normalcy• Extended family
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.
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.
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
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
www.exceptionalparent.com