1. Families with Children with Chronic Illness or Disabilities Linda S. Heath N422

2. What do you think of when you talk about a child with special needs, or a child with a chronic illness?

3. Words Chronic: of long duration Special: distinctive, exceptional, Disability: incapacity, handicap

4. 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

5. Parental Responses to Illness or Disability Guilt Fear Overprotective Resentful Hostile Insecure Frustrated Angry Dependent Permissive

6. Family Centered Approach & Developmental Approach Infancy Toddlerhood Preschool SchoolAge Adolescence Trust Autonomy Initiative Industry/Accomplishment Identity

7. Assessing Family Strengths Available Support Systems Perception of the illness/disability Coping Mechanisms Available Resources Concurrent Stresses

8. Tasks of Parents of Children with Chronic Conditions Accept 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

9. Accepting the Child’s Condition “It’s not the hand you’re dealt, but how you play your cards”

10. Managing Day-to-Day Constant Attention Details/preplanning Rxns of other children Social Relationships Effects on Siblings Marital Relationships

11. Meeting the Child’s Normal Developmental Needs

12. Meeting Developmental needs of others in the Family Sibling issues * Parental roles Single parenting Normalcy Extended family

13. 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.

14. 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.

15. 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

16. 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

17. Assisting Family Members in Managing their Feelings

18. Establishing a Support System

19. www.exceptionalparent.com

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