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