NAMI resources to help

This is a mother's story about the agonizingly slow and painful learning curve she endured about her daughter's illness. She saw how unnecessary and unhealthy it was for both of them. After finding answers for herself, she started finding ways to help others—writing the first brochure about advocating for psychoeducation.She describes advocacy measures in a related story

By Judith Carrington

With the unexpected strike of my daughter's "first break" I was vulnerable and distraught . "Overnight" I had to become skilled at how to access services, navigate the system and deal with emotions (mine andmy daughter’s). Overwhelmed, uninformed, unempowered, I had a sense of futility. I found that families are often ignored and sometimes are even the brunt of clinical hostility.More frequently they are shut out because of confidentiality considerations.

My daughter was hospitalized five times in 11 months. I didn't understand her illness, what course it could take, how to communicate with her or how to deal with my complex feelings of shock, denial, grief, shame and anger. I did understand how ignorant I was.

I went about educating myself by attending regular meetings at NAMI (Helpline 11 a.m. to 4 p.m., 212/684-3264).Because my daughter was diagnosed with both schizophrenia and a personality disorder, I also joined the Treatment and Research Advancement Association (TARA 212-966-6514) By attending meetings, conferences, support groups and using their hotlines, I learned how to get support, the information I needed and to convert my pain and sense of impotence into advocacy.

As I started to feel better about myself and to accept my daughter's illness, I realized I had to participate in the treatment course and find a forceful way to be my daughter's advocate without alienating her clinicians. I learned to interject myself as a true member of the treatment team. h

Through NAMI, TARA and my own research, I learned what a proper discharge plan is and how to get it. I learned how to get a Kendra's Law petition that would mandate treatment.I learned how to write a "behavioral contract" so there was a structure of clear expectations between my daughter and me before she left the hospital, something we had never had before in earlier admissions.

As a result, my daughter finally received the treatment she needed, the proper planning upon discharge and the supportive framework she needed for her long recovery.