Parenting a Child with Special Needs: The Effects on the Family Fran D. Goldfarb, MA, CHES Director, Parent & Family Resources USC UAP CHLA Guthrie’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