Families with Children with Chronic Illness or Disabilities

Linda S. Heath

N422

What do you think of when

you talk about a child with

special needs, or a child with a chronic illness?

WordsChronic: of long duration

Special: distinctive, exceptional,

Disability: incapacity, handicap

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

Accepting the Child’s Condition

“It’s not the hand you’re dealt, but how you play your cards”

Managing Day-to-Day

• Constant Attention• Details/preplanning• Rxns of other

children• Social Relationships• Effects on Siblings• Marital Relationships

Meeting the Child’s Normal Developmental

Needs

                             

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

Assisting Family Members in Managing

their Feelings

Establishing a Support System

www.exceptionalparent.com

                      

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