«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
When this happens, they are assigned the role of mental patient and no longer seen as valid members of society. In fact, we view them as invalids. Fisher and Ahern go on to write, With the label of mental illness, a whole new set of discriminations and problems must be overcome. There is a loss of rights. People can lose property, lose custody of children, lose privacy and lose due process before the law. They are basically taken out of the traditional legal system and placed in 172 Welcoming Children the extra-legal psychiatric system. The major tasks then in recovering from mental illness are to regain social roles and identities which are recognized as valid by oneself and the people in one’s community.8 In their article “People Can Recover from Mental Illness,” Fisher and Ahern also cite studies from the United Nations World Health Organization, which show that the rate of recovery from severe mental illness is much better in Third World countries than in Western industrialized countries, which rely more on drugs for treatment.9 Ahern tells a story on the National Empowerment Center’s website about two college-age men who return home after experiencing similar psychotic breakdowns. One is immediately hospitalized, and the other is kept at home and treated with alternative therapy strategies to help him heal from his pain.
Psychiatric survivor Jim Moore, in his review of The Necessity of Madness and Unproductivity, by Dr. John Breeding, writes that he was inspired to become a counselor out of his own experience with mental illness and psychiatric practices. He saw many people cast into the role of the chronically disordered who lost their personal freedom and cognitive capabilities. Yet he saw that the depth of their human light could still shine. He writes, “I am very grateful that I was able to slowly find persons and resources that saw my experience of madness as having a wisdom that was understood in 173 Schizophrenia the context of a spiritual, religious, or psychic transformation.”12 He goes on to say, John’s book gives hope to those of us that see the great potential in embracing the whole of human experience. Madness can be seen for what it is. There is nothing to fear or suppress. It is something to be supported and integrated.... We are full and whole spiritual beings in a potentiated and/or happening process of dynamic evolution. Naturally, peeling off the worn aspects of the Self can be a very dynamic and non-ordinary experience. It is who we are and we need to support experiences out of the narrow and seemingly getting narrower corridor of acceptability.13 Ministering to Families It is important to realize that people with mental illness have been neglected, abused, mistreated, maimed, lobotomized, shocked, and drugged throughout history. For the most part, their concerns have been dismissed, and they have been treated as dependents who are too confused to help themselves. In fact, though, many people with schizophrenia (whether they are on medication or believe they have been cured) live full lives and contribute to their own care and happiness.
As members of a faith community, it is appropriate for us to look at schizophrenia from a spiritual perspective. Much of the current literature on this topic concerns the process of healing and returning to a greater wholeness upon successfully responding to life’s losses, conflicts, and traumas. Many books have been written to help people emerge from trauma and loss with a greater appreciation for the sacredness of life and its spiritual wonders.
Using this information as a foundation, our congregations and religious education programs can provide opportunities for spiritual exploration. We can also consider literature that explores alternative treatment strategies and the civil rights of people diagnosed 174 Welcoming Children with schizophrenia. Parents are less likely to receive this type of information from the mainstream mental health professionals.
As with any emotional, mental, or behavioral disorder, maintaining a positive and hopeful attitude makes a profound difference in healing. As ministers and religious educators, we can provide an atmosphere of hope for those parents and children who are coping with shame, confusion, and grief. Constant support will be critical to parents and families as they battle the mental health system and wade through an enormous amount of information and advice concerning what is best for their child.
As religious educators and ministers, we may encounter two different scenarios involving families coping with schizophrenia.
In one, the parents have a child who has been diagnosed with schizophrenia, and they have taken the medical model approach to treatment. In the other, the parents are suddenly coping with a child who is hearing voices and hallucinating, and they want to know what to do. In either case, the parents may seek alternative treatments to medication, which means they will need support as they sort through all the conflicting information from doctors, mental health professionals, people with schizophrenia, parents, and psychiatric survivors.
Parents will need support, too, in dealing with their feelings about having a child with schizophrenia. They are likely to feel guilt and/or shame. They may feel that others blame them for their child’s condition. Moreover, they may be grieving for the child that they feel they have lost to this disorder. Their lives have been permanently changed, which can cause anger, resentment, and confusion. Caring for their child may have totally consumed them.
Our job is to listen and to offer support. We can work with parents to help them find balance in their lives and ways to take care of themselves.
With recent research showing that disturbing behavior may be due to brain chemistry, parents are no longer blamed for their child’s schizophrenia. While parents are no longer cast as the “bad guys,” their behavior and interaction with their child does affect his or her behavior.
175 Schizophrenia Unfortunately, the treatment strategy used with children who are depressed, highly explosive, or oppositionally defiant frequently fails when applied to children with schizophrenia. Treating schizophrenia with drugs is the overwhelming approach of psychiatrists. As previously noted, NAMI supports the view that schizophrenia is a disease of the brain, in part because that explanation is preferable to the idea that the parents are to blame and in part because medication can relieve some symptoms.
Our role as religious professionals and lay leaders is to support parents on the path they have chosen to cope with their child’s schizophrenia. Those who are struggling with the immense amount of information available about mental illness might benefit from participating in the NAMI workshop entitled “Journey to Hope.” (Go to www.nami.org to find a local chapter.) Parents who want to explore alternative therapies might benefit from contacting a psychiatric survivors network, such as the National Empowerment Center (1-800-769-3728).
Ideas for Teaching Involving individuals diagnosed with schizophrenia in our youth groups will be a challenge. They will most likely be on medication, and their behavior will often be different than it was before they were medicated. They may be in and out of the hospital, disrupting contact with and support from friends and family. Moreover, their peers will probably not understand their mental illness and may view their behavior as weird and disturbing. Because of this, it will be very important to talk with members of the youth group about what their friend is going through and to ask for suggestions on how to continue to include him or her in the group.
One of the most important supports a youth group can provide is a safe haven—a place where a youth will always feel accepted, even if he or she comes and goes because of periods of hospitalization. Adolescents diagnosed with schizophrenia are terribly lonely. Consider that their lives have been disrupted, and they may have lost their friends and their support network.
176 Welcoming Children Our congregations can stay in relationship with these youth and help them re-establish their connections with other people. We
can also offer opportunities to work through psychospiritual struggles and renew the soul. Here are some useful ideas for ministry:
• Respond and respect genuinely. So many times, adolescents with schizophrenia are dismissed for having unusual or crazy ideas. Their concerns and feelings are ignored when all their behavior is seen as symptomatic of mental illness. Do not dismiss what they say, no matter how bizarre it appears. Understand that much of these youth’s behavior may stem from the normal struggles of adolescence, not their illness. We can respect these young people’s rights and views.
• Establish predictability and security. For young people whose lives are in turmoil, a predictable and secure place to come provides immense support and healing.
• Enhance self-esteem. The self-esteem of adolescents with schizophrenia has been crushed. Any way we can nurture it will help with their healing. Robert Brooks’s and Sam Goldstein’s ideas about establishing “islands of competence” for children who struggle (see page 39) will be useful here.14 With the parents’ help, identify a strength or an activity the adolescent loves doing. Also see if his or her “island of competence” can be incorporated into the church experience. For example, if the youth loves music, put him or her in charge of selecting the pieces to be sung or played at each youth group meeting and give plenty of praise.
• Love and support the real adolescent, not the unusual behavior.
Many youth with schizophrenia become experts at hiding their true feelings and their true selves. Regrettably, many come to believe that they are worthless victims of their disease. Our ministry to these young people should help them see that they are unique children of the universe and that there is nothing they can do to destroy our love for them.
• Create ways to understand others. Schizophrenia, by its very nature, means that the adolescent has become self-involved, with little ability to relate to his or her environment or empathize with others. Finding ways to engage teens with schizophrenia in helping others can expand their understanding and lessen the focus on their own pain.
• Include visualization, guided meditations, and prayer. Helping teens connect with a higher or deeper power can provide hope and a sense of what is sacred and meaningful in their lives. This is critically important for adolescents diagnosed with schizophrenia.
• Restore hope continuously. People with schizophrenia have lost hope, in part, perhaps, due to the psychiatric community’s view that this disorder is incurable. No matter how controversial it is to believe in a cure, we can provide hope by believing in these individuals’ ability to heal and renew themselves. For children and youth, in particular, the adults in their lives must provide that vision of hope.
The following story, which comes from Emily Green, the former director of religious education of a midsized church, illustrates how a religious community can successfully respond to the needs of a youth with schizophrenia and provide a place of
connection and spiritual search:
We have a boy in our church who is schizophrenic. His parents are long-time members of the church and are very involved in many church activities. When Alex became a teenager, he started hearing frightening voices. His parents did not want to leave him home alone because they were afraid he might harm himself. Neither did they feel comfortable having him attend one of the classes, for fear of what might happen when he started hearing voices.
We set up a mentor situation for Alex that involved four volunteer adults who knew and liked Alex. We also had 178 Welcoming Children substitutes lined up. Each Sunday, Alex had the option, with his mentor, to attend any class third grade and up, to talk to the mentor, or to do some sort of activity, such as taking care of the recycling or counting the offering. We held a special teacher meeting to inform the religious education teachers about Alex’s condition and how the mentor system would work. We let the teachers choose if they wanted Alex to come into their class, and everyone said yes.
This situation has worked out very well for all concerned.
The mentors really enjoy their time with Alex. Every Sunday, Alex comes to me to find out what the classes are doing so he can make his choice. He chooses the activities that interest him, so his class time is always positive. He rarely stays for an entire class and often ends up talking with his mentors. I’ve heard that the conversations have been wonderful.
We are now in our second year of this arrangement and Alex has requested some reading materials to share and talk about with his mentors. We started with reading and talking about the Bible and have also used several UU meditation manuals for short readings to begin discussion. He often joins the high school class in their discussions of hot issues like abortion, gun control, and the death penalty.
The relationships that Alex has developed during this time have become extremely meaningful to his family. They have allowed his parents to stay involved in church life and provided a positive way for Alex to participate in our community. Every Wednesday evening, Alex greets me with a big smile before he rings the bell to announce that dinner is ready. He has found a place where he is loved and appreciated for who he is.