Portland State Magazine Winter 1991

Before respite care my days were filled with havoc. There wasn't a minute (literally) of relaxation from my four-year-old. r would envy other families whose children would sit in stores or restaurants for more than two minutes. I am a parent of an attention deficit disordered (ADD) child. I explained my feelings as the mother of an ADD child to the principal and special education teachers and hoped they would understand that the normal classroom environment they were suggesting may not be appropriate.... I was ready for battle. Much to my surprise, they not only understood, they came up with solutions that I didn't know were available. After many years, my husband and I have finally accepted that our child will never lead a "normal" life. The doctors say he will have to live his life in a sheltered environment. Do you know how it feels to have your son so out of control that he doesn't even recognize his mother? Do you know how angry and , helpless it feels to see your son in a strait jacket and four-point restraints for the first time? Parent Comment I remained unchanged, frustrated and alone until I met another parent. Over time my confidence has grown and the guilt is gone. This has helped Lisa too since 1 now can affectively advocate for better service for her. I am also proud of her for the successes she has made. I don't think I'll ever forget the desperate feeling of not being able to stop my son Jason from hitting and throwing things at me in a department store one day. I felt embarrassment and shame as people looked on and both whispered and spoke out about my inadequacies. D PSU 8 The Center' s research has focused on "bottom up" identification of problems and solutions from the perspective of parents and families. At the same time, the RTC's sister center, located at the University of South Florida in Tampa, has taken a more traditional , top-down look at various formal federal, state and local mental health systems. "The two approaches actually comple– ment each other," says Friesen. "To facilitate any meaningful change, we must look at the whole spectrum of what services are and are not available, what works and doesn ' t work- not just in terms of the children and their problems, but the impact their di sabilities have on the entire family. " And the impact is tremendous. Through a survey of parents and caretakers, the RTC was able to identify, for the first time, the most pressing topics of concern to families of children with mental health disorders. "Guilt and isolation were the most commonly mentioned problems," says Friesen. "Parents blame themselves and Dr. Barbara Friesen feel that family , friends and even the professionals who are there to help them blame them , too. It ' s part of our society 's deep-seated beliefs about mental health that were propagated beginning in the 1920s. Sigmund Freud believed parents were responsible for their children's problems and would therefore interfere with any treatment. Since then, we have discovered that mental illness is complex and stems from a variety of biological, psychological and environmental factors. It isn't a simple matter of poor parenting." At the heart of the Center' s activities is the focus on rehabilitation and support strategies rather than seeking out cures or emphasizing change in families . The research reflects this focus , including projects such as a family caregiver survey, a minority cultural initiative; a family case management model, parent participation strategies, and cross-disciplinary professional education. "We work under a conceptual framework that says the best interests of the children will be served if their parents and the service providers with whom they are involved work together as partners on their behalf. "Some of the frustration of the parents comes from trying to work within a system that has strict guidelines and slots. If your child fits an agency ' s definition and has the right label- and you can afford it-there might be some help. "Our goal is to help build a system that looks at the needs of the individual child, whether they are medical , emotional , or behavioral , as well as the needs of the family, and then tailor a program that best suits that child and family . It ' s a whole new approach , and one that will take time to refine and implement," notes Friesen. " ...mental illness is complex and stems from a variety of biological, psychological and environmental factors. It isn't a simple matter of poor parenting." A t the outset, the RTC involved the parents of children with emotional disorders in the identi– fication of their problems. Through surveys and contacts with families around the country, two issues emerged as primary concerns to parents: respite care and custody. Respite care is an example of how the Research Center actively works with parents and other groups to foster change. Friesen, along with directors of some state Child and Adolescent Service System Programs (CASSP) met in Oklahoma with 15 parents of children with emotional disorders. The parents described the physical and emotional toll of being 24-hour caretakers and how difficult it is to • •