After being deemed mentally ill for over 32 years, I'm now learning what it is to be "normal". After 32 years of psychiatric units, psych meds, psychodrama, individual and group therapy, etc... I've been given a clean bill of mental health (except for PTSD).
Now, this does not mean I am no longer seeing a therapist. I am being followed by the Chemical Dependency Rehabilitation Program (CDRP) at Kaiser Permanente. I have over 9 months clean; and I'm learning to be a responsible adult. I was once asked what the difference is between the care I'm getting now compared to the care I was receiving (through the department of Psychiatry)? I can sum it up in one word, "accountability."
While "mentally ill" my poor behavior was excused. I was told and my family was told that I would never change. In fact, my parents were advised to have me placed in an institution at the age of 8 or 9 years old. They told them that I would never function in society. When I sought assistance from the state department of rehabilitation, I was told that the only stress I would ever tolerate was being able to lie on my back at a park with a plane flying overhead. And, the plane would be too much stress. I set-out to prove them wrong; but every time I tried, I screwed-up. I became overworked, overwhelmed, and challenged both physically and mentally. When my daughter died, 2 years ago, I thought that would certainly be the end. I was on the highest doses of psych meds in my whole life and became addicted to pain medication and benzos (anti-anxiety meds). After having a severe headache that lasted for over a year, I decided that something needed to change. I needed to learn boundaries (for myself and others).
I am now ready to rejoin the real world, as a responsible adult and an accountable member of society. I've finally figured out what I'm going to be when I grow-up. I look forward to continuing the work I began with the Mental Health Services Act. I am pursuing my Ph. D. in Health Services: Health Promotion and Education through Walden University.
The mission of this school is social change. To that end, unlike most universities, everything I do will be directly applicable to whoever I serve. I'm particularly interested in the integration of primary and mental health care, looking at us as whole individuals. I'd like to establish the role of health education in the prevention and early intervention of mental illness.
How can someone be allowed to "function" for over 32 years in the same way, without any hope for a future? What can we do to keep this from happening to others? Once I began treading water, I soon noticed I was swimming on my own with the only support being from the water. It all seems so simple. How do we get others to learn the same lesson and learn to be self-reliant and accountable for their own care and behavior? These are only a few questions I'd like to answer. And, I know from past history, I have peers who'd also be interested in the answers.
The above story illustrates the spirit of CalMEND. By changing the system to one of education before medication, we can reduce the trauma endured by our peers. Please don't misunderstand me, I am not saying to eliminate the use of psychiatric medications. I am saying that they need to be used judicially and with great caution, only when other options are ruled-out.
Thanks for letting me share.
I lost my child from mental illness
CL, MSHSA, CHES, PSS
There are many who believe that mental illnesses are biologically-based brain disorders with environmental triggers. While this does appear to be a pattern in some families, it need not be a prediction of future mental illness. As a health educator, I place a lot of emphasis on the “environmental trigger” aspect. As humans, we contribute to our own health; and mental wellness is no exception.
When Joshua was born he weighed 3 pounds 13 ounces. And, because of my Bipolar Disorder and his father’s diagnosis of Schizophrenia, combined with the reality that Joshua was going to be induced as a preemie, our little family was already on the radar of Child Protective Services. His father’s threats to the hospital social worker didn’t help either.
When Joshua was born he was whisked away, interrupting the normal mother-child bonding experience. In the Neonatal Intensive Care Unit (NICU) he was attached to numerous tubes, wires, and probes, necessary for his survival. This would have been traumatizing for anyone; so it was no surprise that Josh began showing symptoms of a psychotic illness at the tender age of two years. And, because of my own mental health issues, he was removed from my care (in the name of residential treatment). At the time, I had no way of knowing his condition would deteriorate. After a year, he was placed in a more permanent placement. This is when he was molested.
Meanwhile, I was placed on Prozac. And each time there was a “permanency planning hearing” they would need to increase the dosage. After each hearing, feeling completely helpless, I would be carried from the courthouse, crying uncontrollably. The social worker became obsessed with the case; and having no children of her own, was heard to say, if she couldn’t have him, nobody would. Unfortunately, she was so consumed by meeting her own needs she neglected the needs of my son. The false accusations came pouring in. My new husband and I were inundated by accusations of sexual assault, including “oral copulation”. Many of these incidents were reported for times we didn’t even have visitation and were thus, “unfounded”. This continued for over eight years. We found out several years later that these terrible actions were being perpetrated by the caregivers at the residential treatment home. He was forced to sleep in diapers in a crib in a locked room overnight whenever he had an accident. He was forced to stand in the corner holding stacks of phone books in each arm when he acted out. And, other unspeakable actions were perpetrated against him without my knowledge. I had a feeling that there was something happening. (Mothers seem to know these things.) But, because of my own mental health diagnosis, nobody would listen to me. So, the abuse continued.
When Joshua was 12 y/o he was transitioned back into the home, after spending the last couple of years at the Village of Child Help, where they realized that we were not the ones to blame. When Joshua finally came home, Child Protective Services (CPS) was very apologetic. Joshua was admitted to a locked psychiatric facility; and when he arrived at home, he was in (what can only be called) a “chemical straight jacket” of Stelazine, Cogentin, and other medications to keep him sedated. He was a lifeless being. However, I guess it was better than the alternative… When we had this changed, Joshua became an uncontrollable, self-mutilating youth. As parents, we were beside ourselves. Without community support, not knowing what else to do, we had our son admitted. He soon was transferred to a state hospital where he was “stabilized”. And, once again, unknown to me, he was traumatized. However, this time, instead of being a victim of a crime, he was a victim of the system. I found out later that Joshua endured forced seclusion and restraints on more than one occasion.
It is a miracle that Joshua has accomplished what he has. He came home permanently, in time to graduate from high school. He later went into the Army and earned a marksmenship award. He had quit taking his medications and was able to assume the role of soldier quite well, until the death of his sister in 2007. This is when the traumas of his life caught-up with him. He received a medical discharge over a year ago and now resides with us. He continues to be challenged by his symptoms. (Okay, we’re challenged by his symptoms.) But, the negative symptoms of psychotic illness don’t seem to affect him personally.
Custody is an issue with children of mentally ill parents. It has been recorded by various sources that the custody loss rate for parents is 70 – 80% nationally. This appears to be the same as figures recorded in 1990. Parents feel victimized by the system and are still stigmatized; and this stigma impedes on access to care for fear of losing their children. In fact, “incompetent parenting as a result of mental illness is one of the most common grounds on which courts terminate parental rights” (Ackerson, 2003). And, when services are delivered, they are usually problem-focused and deficit-based rather than preventive or strength-based. (Nicholson et al, 2001)
Although, studies are limited, rates of child psychiatric diagnosis among offspring range from 30% to 50%, compared with an estimated rate of 20% among the general child population. (Nicholson et al, 2001) Research indicates that children of mentally ill parents experience higher than average levels of psychosocial stress, behavioral and emotional symptoms leading to mental health diagnoses, increased suicidal behavior, antisocial behavior, conduct and oppositional defiant disorders. Learning difficulties and a greater incidence of attention deficit disorder is also seen. (Reupert & Maybery, 2007) However, exposure to adversity does not necessarily equate to dysfunction.
I now have the opportunity to contribute to society by providing support for families who are experiencing the challenges of living with a mental health diagnosis. I propose a wrap-around program involving peer education and support. Through these efforts, situations like the one we endured need not happen.
Program intervention through psycho-educational support has been demonstrated as being helpful for families with mental illness. However, evidence is limited. Best practices are multi-disciplinary, including integrated service planning, case management, services for the family and natural supports, developmentally appropriate psycho-educational materials for parents and children, support groups, and system-wide resources. (British Columbia Ministry of Children and Family Development, 2002) Family psycho-educational groups are becoming an integral part of the mental health delivery system for families with an adult member living with a serious mental illness. This meaningful intervention offers a balanced presentation of information about mental illness with group problem solving, communication skills, coping skills, and social supports. Family psycho-education is considered an evidence-based practice by SAMHSA and is useful in the prevention of multigenerational mental illness through a reduction of family stress and strain. “A randomized trial of a family education and support group intervention study designed to enhance knowledge of services and skills needed to negotiate the mental health system found that at 1-year post-intervention there was a significant positive effect on parents' knowledge and self-efficacy for those families in the group intervention” (Ruffolo, Kuhn, & Evans, 2005). However, family psycho-education is only one strategy of psychiatric rehabilitation which includes, “[but are not limited to] social skills training, psychosocial rehabilitation centers, family education, case management, behavioral interventions, vocational rehabilitation, and cognitive remediation as well as individual and group counseling methods” (Corry & Jewell, 2001). The strength of family psychoeducation as an evidence-based practice has been documented in over 30 studies. “The magnitude of the difference is an annual rate of 15% who relapse when family psycho-education is provided, compared to 30% - 40% for consumers receiving individual therapy and medication or medication alone” (Bond & Campbell, 2008).
Programs such as this are necessary to reduce the trauma being perpetrated against families and children through the system. Together, we can make a difference.
Ackerson, B. J. (2003). Parents with Serious and Persistent Mental Illness: Issues in Assessment and Services. Social Work , 48 (2), 187+.
Bond, G. R., & Campbell, K. (2008). Evidence-Based Practices for Individuals with Severe Mental Illness. Journal of Rehabilitation , 74 (2), 33-44.
British Columbia Ministry of Children and Family Development. (2002). Supporting Families with Parental Mental Illness.
Copeland, M. E. (2007). WRAP - Wellness Recovery Action Plan. Retrieved from Mary Ellen Copeland: www.mentalhealthrecovery.com
Corry, R., & Jewell, T. C. (2001). Psychiatric Rehabilitation Idealized: Multi-Setting Uses and Strategies over the Course of Severe Mental Illness. Journal of Mental Health Counseling , 23 (2), 93.
Nicholson, J., Biebel, K., Hinden, B., Henry, A., & Stier, L. (2001). Critical Issues for Parents with Mental Illness and their Families. University of Massachusetts Medical School, Center for Mental Health Services Research: Department of Psychiatry. Rockville, MD: Center for Mental Health Services: Substance Abuse and Mental Health Services Administration.
Reupert, A., & Maybery, D. (2007). Strategies and Issues in Supporting Children Whose Parents Have A Mental Illness Within the School System. School Psychology International , 195-205.
Ruffolo, M. C., Kuhn, M. T., & Evans, M. E. (2005). Support, Empowerment, and Education: A Study of Multiple Family Group Psychoeducation. Journal of Emotional and Behavioral Disorders , 13 (4), 200+.
San Bernardino County Department of Behavioral Health. (2008). Prevention and Early Intervention Plan. San Bernardino, CA.
The Mental Illness Education Project, Inc. (2008, October 9). "I Love You Like Crazy". Retrieved from The Mental Illness Education Project, Inc.: ttp://www.miepvideos.org/shop/product1.html
United Advocates for Children of California. (2006). Implementation of Proposition 63: The Mental Health Services Act. Sacramento, CA.