Parenting a Child with Special Needs: The Effects on the

Family

Fran D. Goldfarb, MA, CHESDirector, Parent & Family

ResourcesUSC UAP CHLAGuthrie’s Mom

Introduction: Who I am

• A parent professional• A health educator• A wife• A mother• An artist• An activist

Introduction: Who I am not

• A representative of all parents• A saint• A martyr• Someone to be pitied• A volunteer

Becoming a Parent – The Dream and the Reality

• Dreams of the parent• Coming to terms with a different

reality• Welcome to Holland

Our stories

• Pre-natal diagnosis• Learning at birth• Seeing problems as the child gets

older• Traumatic event

Learning your child has special needs

• Redefining your child has someone who has special needs

• Concerns raised by a professional/ seeking out a diagnosis

• The push for a diagnosis • Wanting to fix your child

The Stages of Grief

• Classic Stages– Denial– Anger – Bargaining– Depression– Acceptance

The Stages of Grief

• My experience– Suspicion/Confusion– Relief– A terrible sadness – Coping and competence– Trusting my gut

Cycle of Aggravation

• Welcome to Holland revisited• Learning new skills• Advocacy• Collaboration• Don’t go into the basement

My Story

Back to School Night

Education

Health

Mental Health

Developmental Disabilities

Impacts• Effects on relationships

– Marriages– Siblings– Other family members– Friends

• Financial• Employment• Health• Previous Interests

Other Impacts

• Redefining who you are– Losing your name– Case manager– Expert on your child– Advocate– Mentor– Resource– Exception

The Parent Professional Partnership

• What we want– Concrete information

• diagnosis • prognosis• where do we go from here • who can help us • what will work every time • What never to do

– Honesty

The Parent Professional Partnership

• What we want– Laws enforced and implemented in

the spirit in which they were written– Our rights respected

The Parent Professional Partnership

• What we want– Family-centered planning

• to have our children viewed as children and not labels or disabilities

• to be seen as competent and concerned• to have our expertise on our children

recognized• to be viewed as participants not recipients• to have doors unlocked

• to have the professionals who work with us to see us as individuals

• our values and cultures to be respected• the realities of our lives recognized• other parents – a peer group• our children to reach their potential• a community