1. 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

3. Introduction: Who I am A parent professional A health educator A wife A mother An artist An activist

4. Introduction: Who I am not A representative of all parents A saint A martyr Someone to be pitied A volunteer

5. Becoming a Parent – The Dream and the Reality Dreams of the parent Coming to terms with a different reality Welcome to Holland

6. Our stories Pre-natal diagnosis Learning at birth Seeing problems as the child gets older Traumatic event

7. 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

8. The Stages of Grief Classic Stages –Denial –Anger –Bargaining –Depression –Acceptance

9. The Stages of Grief My experience –Suspicion/Confusion –Relief –A terrible sadness –Coping and competence –Trusting my gut

10. Cycle of Aggravation Welcome to Holland revisited Learning new skills Advocacy Collaboration Don’t go into the basement

11. My Story Back to School Night Education Health Mental Health Developmental Disabilities

12. Impacts Effects on relationships –Marriages –Siblings –Other family members –Friends Financial Employment Health Previous Interests

13. Other Impacts Redefining who you are –Losing your name –Case manager –Expert on your child –Advocate –Mentor –Resource –Exception

14. 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

15. The Parent Professional Partnership What we want –Laws enforced and implemented in the spirit in which they were written –Our rights respected

16. 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

17. 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