Journal of Child & Adolescent Mental Health

ISSN: 1728-0583 (Print) 1728-0591 (Online) Journal homepage: http://www.tandfonline.com/loi/rcmh20

Raising a mentally ill son Roxanne Lanquetot To cite this article: Roxanne Lanquetot (2008) Raising a mentally ill son, Journal of Child & Adolescent Mental Health, 20:1, 53-56 To link to this article: http://dx.doi.org/10.2989/JCAMH.2008.20.1.7.492

Published online: 12 Nov 2009.

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Date: 22 June 2016, At: 10:41

Journal of Child and Adolescent Mental Health 2008, 20(1): 53–56 Printed in South Africa — All rights reserved

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JOURNAL OF CHILD AND ADOLESCENT MENTAL HEALTH EISSN 1728–0591 DOI: 10.2989/JCAMH.2008.20.1.7.492

Letter

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Raising a mentally ill son

I know of four generations of relatives with schizophrenia in my family since they immigrated to America from Belarus before the First World War. I was 11 when my 27-year-old mother had her first major psychotic decompensation, but she had been symptomatic since I was a child. I was always embarrassed and frightened by her behaviour. I didn’t understand why my grandparents kept saying, ‘Never forget you will have to take care of your mother when you grow up.’ Why should I have to take care of her; she never took care of me? College was my escape. I chose Stanford, thinking that Mother would never come to California, where she was first hospitalised. Imagine the horror I felt when she showed up on campus in the middle of my second year! I fled to France. Living in Paris for a year restored my self-confidence, and I returned to the States to finish school. Back in France on vacation, I met my husband Guy, an architect. Our son was born in 1961. I was 28, my husband 36. I believed a French child with two loving parents could never become ill. In 1961 the general public was still not aware that mental illness is biological and hereditary. Our son was almost two when we moved to New York. Mother was safely hospitalised in Western Kansas. She couldn’t damage my son the way she had damaged me. I was proud of Serguéï. He was handsome, charming, and had many friends. He attended the United Nations School. When he was nine, he was chosen out of the student body for a major role in a television Christmas special for the benefit of Unicef. He carried the train of Shirley MacLaine down the main aisle of the General Assembly and adlibbed on stage with Bill Cosby. He began to change during his freshman year of high school, but we thought it was due to adolescence. He was cutting classes and not completing his school work. That summer we drove across the US. Our son was agitated and angry. He hurled insults at us from the back seat and once bit me. He refused to get out of the tent to look at the Grand Canyon. We didn’t know what to do. Even a suggestion that he begin the schoolwork required to make up for the work he had missed in order to be promoted to his sophomore year elicited a tantrum. It was a horrible trip. We feared not getting back to New York without an accident. Serguéi might do something to hurt himself or us. We took our son to a psychiatrist in New York City, who specialised in adolescent psychiatry. The doctor was arrogant and pretentious. He treated us as though we were ‘schizophrenogenic’ parents from the fifties and blamed us for our son’s behaviour. Smoking marijuana and cutting classes was of no import. He labelled my husband a rigid French father who wouldn’t play baseball with his son and wanted him to speak French; and me a chaotic thinking, intrusive mother. Holding us responsible for our son’s problems almost lead to a divorce. My husband was ready to go back to France. Like many of the mentally ill, Serguéï had no judgment. He became involved with an adolescent runaway who was subdealing for the neighborhood drug dealer. He and this boy concocted a plot to rob the dealer, sell the drugs, rent an apartment and go back to school. All the adolescents in the neighborhood between the ages of 13 and 17 knew what the boys had planned. During the robbery the dealer was killed, and our son and his friend were charged with murder. A hot-shot criminal lawyer introduced us to the intricacies of the federal justice system. Expelled from the UN School, Serguéï finished high school in a public school and was invited by my brother to stay with him and his wife and attend a local community college in Maryland. He dropped out after a few weeks and started smoking again. When my brother found cigarette papers,

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he threw him out. Eventually he ended up sharing an apartment with my mother. A nightmare came true! He was working as a gardener in a housing project, the only job he held for more than a few weeks, but at the end of nine months my brother insisted we bring him back to New York. He claimed that Serguéï was causing Mother to decompensate. What our son was doing that was detrimental to Mother’s mental health was not clear, but I was glad to have him back. He would be better off with us. In New York we laid down an ultimatum to either go to school or get a job. We refused to support him forever. Like many mentally ill, he couldn’t hold it together. He was thrown out of a room he rented after he ignited a big log on a small metal barbecue tray in the garden in the middle of winter to barbecue a steak. The landlady of his second rental complained he was annoying her tenants by screaming out the window, ‘Help! The police are coming.’ In spite of this dysfunctional behaviour, schizophrenia was not yet in the picture. An ‘iffy’ diagnosis of an unspecified mental illness made at a psychiatric clinic was no help at all. We were overwhelmed. As hard as we had tried, we hadn’t protected our wonderful French son from mental illness. A psychiatrist friend of ours, who had known Serguéï since he was a child, assured us that he did not have schizophrenia. His affect wasn’t flat; he was emotional. Our friend advised us to leave him alone. By constantly bailing him out, we were preventing him from learning to take care of himself. If he hit bottom, he would have to pick himself up. This seemed like a viable alternative since nothing else had worked, and we tried to ignore him. I was appalled, but I shut my eyes and didn’t interfere. It took a year for him to arrive at base point, homeless, sleeping in shelters or on park benches, and begging for food in the street. Once he punched me in the jaw for refusing to give him five dollars for underpants. He had arrived at the bottom, but he couldn’t pick himself up. He would remain homeless unless we intervened. Our son’s problems were more serious than simply being babied and not growing up. Our friend admitted that his plan didn’t work and suggested we take Serguéï to the Masterson Center for Character Disorders. We agreed. We were desperate, ready to try anything. Leaving the center after his second appointment, Serguéï went up to a police car parked in the street and banged on the door. The policeman got out, and our son twisted his arm. He claimed that the police car was following him down the street with no lights. He was arrested, spent a night in jail, and was transferred to Bellevue, one of the biggest city hospitals in New York with an excellent Department of Psychiatry. The diagnosis was Schizophrenia. Serguéï was clearly disturbed. He had a thought disorder, heard voices that were not audible to anyone else, and saw people who weren’t there. He remained in the hospital for seven months. They allowed him to stay as a favour to me, because I worked there. The doctor said that if the seventh medication didn’t help, they would have to send him to a state hospital — not Manhattan State, considered the garbage dump of Manhattan, but Rockland State, which had a better reputation. A state hospital in Manhattan, Rockland County, or Timbuktu made no difference. It was the end of the world. I was devastated. My son would spend the rest of his life wandering around the grounds like a specter, unshaven, drooling, talking to himself. Serguéï was stabilised on Prolixin in June of 1985 and transferred to a halfway house in Brooklyn, one month short of his 24th birthday. My flight from Schizophrenia was a failure. My son had inherited the family’s damaged genes. Drugs and the stress of the murder had activated the genes. He lived in the halfway house for ten years, each year increasingly more painful for us parents. Former sandbox friends I met on the street were bursting with news of their kids’ progress. Johnny was finishing medical school; Elaine was in a doctoral programme at Princeton; Chris had a painting in a group show. What was Serguéï doing? I couldn’t answer. I ran away to hide the tears. Guy and I were forced to watch the transformation of a bright, attractive youngster into a crazy young man tortured by invisible spirits. We began observing a marked deterioration in our son’s behaviour and thinking, even on medication. He stopped his weekly visits to our apartment in Manhattan after the voices forbade him to take the elevator to the tenth floor. He told us we wouldn’t see him anymore, because the CIA was preparing to send him out of the country. The only hope was to try one of the newer atypical medications, but he refused to return to the hospital. Involuntary hospitalisation was out of the question, we learned. Since Serguéï wasn’t dangerous,

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Journal of Child and Adolescent Mental Health 2008, 20(1): 53–56

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his civil rights were inviolable. Although he was dramatically ill, he had the right to remain without proper treatment. He could be committed only if he harmed himself or another person. Due to clinical, public and legal movements, criteria have been developed to protect the civil rights of the mentally ill. They consist of providing the least restrictive environment for patients as long as the patient is not a danger to himself or others. The definition of danger varies from state to state, and is often difficult to interpret. In states where the definition of ‘danger to self or others’ is not as strict as in New York, it is easier to hospitalise a psychotic person against his or her will. In New York, in order to safeguard civil rights, a person is too often allowed to become part of the homeless brigade. No doctor would risk being sued for violating a patient’s civil rights. Even if the patient is deemed violent, hospitalised and forced to take medication, he or she is discharged as soon as they stabilise. My husband and I had to act. We went to the Mental Hygiene Court in Brooklyn three times to petition the judge for mental hygiene warrants for hospitalisation. The petitioner, my husband, had to accompany two policemen to identify him. I came, too. Guy needed my support, and I his. At the request of the police our son submissively thrust his arms out to be handcuffed. The clink of the lock of the metal bracelets set off a flood of emotions. Had we made a mistake in petitioning the court? We might lose our son forever. I turned my head to hide my emotions. Once in custody, we returned to court to assure the judge that our son was truly psychotic. At first Serguéï answered questions logically. He knew his name, address, age, and the date. Then, he began talking about being sent on a mission by the CIA. When a civil rights lawyer asked him if he wanted to go to the hospital, he said, ‘I need to see a doctor.’ The mental hygiene warrant had not severed our beloved son from his parents. Serguéï was admitted to a hospital in Manhattan. He refused to try Clozapine because of the blood tests and had to be put back on Prolixin. He transferred to a halfway house and psychosocial programme in Manhattan. The first five years were uneventful. He followed the rules and attended the programme. Although he was interested in art, he was never totally involved. He continued to refuse Clozapine. When he finally agreed, we drove him to Mt Sinai Hospital for the blood tests to make certain that he got there, but after a few months he said, ‘You don’t need to bother. I can get there by myself.’ Maybe there is a lesson here for those who resist modifying the laws concerning the civil rights of the mentally ill. The right to get better should be respected, too. Serguéï has changed on Clozapine. He’s as nice as he was before he became ill. He participates in daily activities and is motivated to achieve in art. Everybody likes him. The art therapist thinks highly of his work He has made some extremely imaginative collages, which he sold at the programme’s annual art show. We were delighted to recover our 42-year-old son, although he seemed to be 14 years old. Like his grandmother, he has no insight. To him it’s normal to tell people he lives in a group home and attends a psychosocial rehabilitation programme. He can’t work and becomes angry at any mention of a job. Sometimes he complains that someone is bothering him, but refuses to explain. He fears sleeping anywhere except at the residence, which eliminates all travel. He will not allow doctors and dentists to perform any operation or even clean his teeth, obsessively washes his hands, doesn’t eat foods he believes are poisoned, doesn’t shave, and can sit motionless for hours staring into space. Forgetting the names of people he meets is quite troublesome, and he asks them over and over to repeat. He was abandoned by former friends. He gets along with the people in the group home and the programme, but they are not close. He is attached to his parents, his parents’ friends, and some relatives. We can now discuss our son’s problems with friends. They are no longer secret. We have nothing to hide. We are not overly critical or hostile and accept our son’s bizarre behaviour and appearance (not shaving or cutting his nails, for instance). Not only does the openness relieve the stress on us, but it lessens the stress on our son. Accepted by his parents and their friends, he is less likely to relapse. Many of our friends have children who are mentally ill, but we have found that people with no mental illness in the family also understand. We are members of the National Alliance for the Mentally Ill (NAMI), an organisation founded to help families of the mentally ill by providing information and support groups. We have supported the National Alliance for Research in Schizophrenia

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and Depression (NARSAD) almost since its founding in 1986 and are on its Leadership Council. We are proud to do what we can to increase funding for research in mental illness; the only way the mystery of schizophrenia will ever be solved. I have had numerous articles about families of the mentally ill published in the Wall Street Journal, Newsday and professional journals. I give talks to professionals and family members. I plan to continue my work in a life-long mission of hope.

Roxanne Lanquetot e-mail: [email protected]

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Information, support and advocacy organisations: The National Alliance for the Mentally Ill (NAMI) Colonial Place Three 2107 Wilson Blvd, Suite 300 Arlington, VA 22201 Phone: (703) 524-7600 Infoline: 1-800-950-NAMI Internet: http://www.nami.org National Alliance for Research on Schizophrenia and Depression (NARSAD) 60 Cutter Mill Road, Suite 404 Great Neck, NY 11021 Phone: (516) 829-0091 Infoline: 1-800 829-9289 Internet: http://www.narsad.org Suggested reading: Torrey F (2001) Surviving Schizophrenia: A Manual for Families, Consumers and Providers (4th edn). New York: HarperPerennial Various authors. ‘Schizophrenia Bulletin’. http://www.oxfordjournals.org Various authors. http://mdpsych.org

Raising a mentally ill son.

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