Lisa was as brilliant as she was beautiful . Even as a small child her insight and intuition astounded friends and family alike . Her maturi...
Showing posts with label Family. Show all posts
Showing posts with label Family. Show all posts
Sunday, May 19, 2013
The Genius Claimed By Schizophrenia: Memories Of My Sister
Lisa was as brilliant as she was beautiful. Even as a small child her insight and intuition astounded friends and family alike. Her maturity and intelligence excelled long before the adolescence which brought about the physiological changes which seem to have acted as a catalyst in the onset of the severest form of schizophrenia. Previous to the chemical carnage of unmatched physiological components in her brain, namely the neurotransmitter dopamine and its receptors, she was ahead of her years, her time and certainly ahead of me.
As early as age seven her concentration and comprehension levels amazed me. Although only ten myself and without descriptive vocabulary, I could see this clearly. She would often be charged with explaining to me plot twists in movies we would watch together as kids. And it would be she, the little girl, who would have to comfort me, her older brother, concerning the unreality of scary monster movies.
Also, whole concepts and emotions were conveyed with a single glance. Sure, we also bickered and carried on as siblings do, but memories of things like the three of us on weekends at our dad’s place in the country, stacked on a snow sled racing down a hill, careening toward a snow bank, the impact of which would result in three snow angels being made to the sound of our uncontrollable laughter, far outweigh those of who spilled the milk or who broke the vase (by the way, it was me mom!).
By the age of only thirteen, she had begun a modeling career despite her lack of the height so sought after in that business; such was the power of her beauty. This she initiated and carried out of her own accord amidst ongoing discussion and concerned warnings from both loving parents about any heartache she may have been setting herself up for. It did not affect her grades in school. In fact, as she entered her teens her grades only ever improved, this in fact also to the point of concern. I’ll explain and as I do I hope I can offer some early warning signs to be ever vigilant for as you observe the life of your young adult family member or friend.
She persevered in her modeling pursuits despite repeated disappointments until she received an offer to appear on the cover of a hair dye product. She gave me of her complimentary boxes, which featured her precious face and unmatched hair, on which she wrote: “Chris, here’s a copy of the realization of a dream. Something you and I will share over and over again.” I was absolutely inspired by my little sister. Absolutely inspired. Among other lessons she taught me about the power of belief and perseverance.
Over the next few years changes would begin to take place in Lisa that would frighten us to the level of panic; among them academic over-achievement. By the age of fifteen, as a sophomore in high school, a time when most kids are much more concerned with dating than with homework, she voluntarily restricted her social life to near non-existence. Her free time was wholly occupied locked in her room immersed in the study of law and physics. Having grown bored with constantly winning mock trials held at her school, she began to wonder whether science was more to her liking than law. Her intelligence was indeed always a point of pride with all of us. However, when she began, on the rare occasion of her emerging from her studious inner sanctum to casually begin to describe in terms I still can’t understand, the principles of Einstein’s General and Special Relativity, along with, in intermittent bursts between sips of soda, as if discussing the weather, a casual explanation of why space and time bend. I began to say “whoa, is there such thing as too much of a good thing?”
As the reader may well be aware, the nineteen sixties were a time of experimentation with consciousness expanding, hallucinogenic drugs. In keeping with the established pattern of pushing the envelope, Lisa of course participated in this activity. We do not know to what extent this may have contributed to the onset of schizophrenia, as the pattern had been established as early as puberty. Nor do we know whether LSD was involved or only a then prevalent street derivative called mescaline. Both could indeed have acted as catalysts but it is also possible that neither did. The research in these regards is as yet inconclusive. Of course many schizophrenics have never taken hallucinogenic drugs and many people who show no signs of mental illness have. Regardless, I highly recommend qualified interventions if any over the top excessive lifestyle is observed.
Whereas once we had been concerned over Lisa’s highly sophisticated talk of science, we now were horrified over her ever increasingly bizarre manner of speaking, dress and behavior. She began to show one of the primary symptoms of schizophrenia, a loss of normal cognitive faculties, a lack of contact with reality. Not only these, but her beautiful face by the age of sixteen had become marred by severe and uncontrollable acne, almost certainly as a result of the medications prescribed for her now worsening disease. Things began to come to a head. We knew we had to do something. We were just not sure what. Phenomena which I only recently have come to be familiar with began to manifest in Lisa, namely aural and visual hallucinations; staples of severe psychosis associated with schizophrenia. The panic the family was now experiencing had to be translated to drastic action immediately, especially upon my relating to my mom the following incident which will haunt me for the rest of my life.
Lisa came into my room and sat on my bed for a chat. It had become increasingly uncomfortable to talk with Lisa over the previous months because it had become apparent that there was something very wrong, as her conversations lacked cohesion. Well, the camel’s back was about to give in a big way. My beautiful sister proceeded to explain to me that she was indeed the second coming of Christ. This, I would come to learn is another staple of schizophrenia; delusions of grandeur of a religious nature. My stomach trembled in waves of nervous spasms as I related this to my mother because both mom and I knew, even as the words were leaving my mouth, that institutionalizing Lisa could be avoided no longer.
That was 1985. Since then, ground-breaking milestones have been achieved with antipsychotic medications. Early tertiary intervention coupled with proper diagnosis and treatment can help victims of schizophrenia to live normal lives. This my family urges, because Lisa’s life ended before those medications became available.
Although the State institutions we were forced to place Lisa in provided crude antipsychotic medications in the 1980s like lithium, at least, for the most part, her hallucinations were not as pervasive as before treatments began. However, supervision in these institutions is a disgraceful shame. It is horrifying how easily Lisa was able to separate from her supervision during an outing on October 26, 1987. The abhorrent lack of regard for the mentally ill in this country as is demonstrated so disgustingly by the low level of care these nightmarish carryovers from the days of the sanitariums of the 19th century provide is despicable.
Witnesses at a commuter railroad station stated that Lisa placed herself before an oncoming train. No laughter resulted from this impact. But there was indeed an angel added among the dearly departed, carving her image into the pure light perfection of eternity.
As early as age seven her concentration and comprehension levels amazed me. Although only ten myself and without descriptive vocabulary, I could see this clearly. She would often be charged with explaining to me plot twists in movies we would watch together as kids. And it would be she, the little girl, who would have to comfort me, her older brother, concerning the unreality of scary monster movies.
Lisa and I had an almost symbiotic psychic connection, which transcended our biological kinship. We were spirit-kin, siblings in eternity and this we remain, only temporarily disconnected on the sensory level. We would often say, with perfect simultaneous spontaneity, exactly, word for word, what the other was saying in reaction to a given thing.
Also, whole concepts and emotions were conveyed with a single glance. Sure, we also bickered and carried on as siblings do, but memories of things like the three of us on weekends at our dad’s place in the country, stacked on a snow sled racing down a hill, careening toward a snow bank, the impact of which would result in three snow angels being made to the sound of our uncontrollable laughter, far outweigh those of who spilled the milk or who broke the vase (by the way, it was me mom!).
By the age of only thirteen, she had begun a modeling career despite her lack of the height so sought after in that business; such was the power of her beauty. This she initiated and carried out of her own accord amidst ongoing discussion and concerned warnings from both loving parents about any heartache she may have been setting herself up for. It did not affect her grades in school. In fact, as she entered her teens her grades only ever improved, this in fact also to the point of concern. I’ll explain and as I do I hope I can offer some early warning signs to be ever vigilant for as you observe the life of your young adult family member or friend.
She persevered in her modeling pursuits despite repeated disappointments until she received an offer to appear on the cover of a hair dye product. She gave me of her complimentary boxes, which featured her precious face and unmatched hair, on which she wrote: “Chris, here’s a copy of the realization of a dream. Something you and I will share over and over again.” I was absolutely inspired by my little sister. Absolutely inspired. Among other lessons she taught me about the power of belief and perseverance.
Over the next few years changes would begin to take place in Lisa that would frighten us to the level of panic; among them academic over-achievement. By the age of fifteen, as a sophomore in high school, a time when most kids are much more concerned with dating than with homework, she voluntarily restricted her social life to near non-existence. Her free time was wholly occupied locked in her room immersed in the study of law and physics. Having grown bored with constantly winning mock trials held at her school, she began to wonder whether science was more to her liking than law. Her intelligence was indeed always a point of pride with all of us. However, when she began, on the rare occasion of her emerging from her studious inner sanctum to casually begin to describe in terms I still can’t understand, the principles of Einstein’s General and Special Relativity, along with, in intermittent bursts between sips of soda, as if discussing the weather, a casual explanation of why space and time bend. I began to say “whoa, is there such thing as too much of a good thing?”
- We all indeed began to worry increasingly as uncommon characteristics and behavior gave way to the unusual and from the unusual to the horrifying.
- All endeavors or lifestyle changes became a matter of extremes.
- She began to enter a phase of personal neo-sixties, retro-flowerchild exploration into a period she felt she resonated with during a time when kids her age were immersed in the pop culture of the early eighties.
- Again, there may be a point of pride in seeing your little sister more into Stephen Stills than Boy George, but ultra extremes are frightening and I urge vigilance against them in any loved one’s behavior.
As the reader may well be aware, the nineteen sixties were a time of experimentation with consciousness expanding, hallucinogenic drugs. In keeping with the established pattern of pushing the envelope, Lisa of course participated in this activity. We do not know to what extent this may have contributed to the onset of schizophrenia, as the pattern had been established as early as puberty. Nor do we know whether LSD was involved or only a then prevalent street derivative called mescaline. Both could indeed have acted as catalysts but it is also possible that neither did. The research in these regards is as yet inconclusive. Of course many schizophrenics have never taken hallucinogenic drugs and many people who show no signs of mental illness have. Regardless, I highly recommend qualified interventions if any over the top excessive lifestyle is observed.
Whereas once we had been concerned over Lisa’s highly sophisticated talk of science, we now were horrified over her ever increasingly bizarre manner of speaking, dress and behavior. She began to show one of the primary symptoms of schizophrenia, a loss of normal cognitive faculties, a lack of contact with reality. Not only these, but her beautiful face by the age of sixteen had become marred by severe and uncontrollable acne, almost certainly as a result of the medications prescribed for her now worsening disease. Things began to come to a head. We knew we had to do something. We were just not sure what. Phenomena which I only recently have come to be familiar with began to manifest in Lisa, namely aural and visual hallucinations; staples of severe psychosis associated with schizophrenia. The panic the family was now experiencing had to be translated to drastic action immediately, especially upon my relating to my mom the following incident which will haunt me for the rest of my life.
Lisa came into my room and sat on my bed for a chat. It had become increasingly uncomfortable to talk with Lisa over the previous months because it had become apparent that there was something very wrong, as her conversations lacked cohesion. Well, the camel’s back was about to give in a big way. My beautiful sister proceeded to explain to me that she was indeed the second coming of Christ. This, I would come to learn is another staple of schizophrenia; delusions of grandeur of a religious nature. My stomach trembled in waves of nervous spasms as I related this to my mother because both mom and I knew, even as the words were leaving my mouth, that institutionalizing Lisa could be avoided no longer.
That was 1985. Since then, ground-breaking milestones have been achieved with antipsychotic medications. Early tertiary intervention coupled with proper diagnosis and treatment can help victims of schizophrenia to live normal lives. This my family urges, because Lisa’s life ended before those medications became available.
Although the State institutions we were forced to place Lisa in provided crude antipsychotic medications in the 1980s like lithium, at least, for the most part, her hallucinations were not as pervasive as before treatments began. However, supervision in these institutions is a disgraceful shame. It is horrifying how easily Lisa was able to separate from her supervision during an outing on October 26, 1987. The abhorrent lack of regard for the mentally ill in this country as is demonstrated so disgustingly by the low level of care these nightmarish carryovers from the days of the sanitariums of the 19th century provide is despicable.
Witnesses at a commuter railroad station stated that Lisa placed herself before an oncoming train. No laughter resulted from this impact. But there was indeed an angel added among the dearly departed, carving her image into the pure light perfection of eternity.
Monday, December 5, 2011
Talking to the Wind: My Sister, My Struggle
The light turns red. I stop my car behind the line and wait patiently. There's still plenty of time to get to class. It's then, out of the corner of my eye, that I think I see her. "Don't turn your head," I tell myself, but I do anyway. It's her.
She's standing on the corner, talking to the wind. She isn't dressed badly, not like the "street people" around her. Her hair is combed and dyed a natural shade of blonde. I let out a breath. At least her appearance is still neat, still normal. But for how long? If the past can foretell the future -- only a few more months. I tell myself that if you just saw her you wouldn't think there was anything wrong with her. It's only the odd things she says or shouts to the people passing by, or to herself, that make strangers pull their children closer. I comfort myself with this lie, this nonsense, and I almost believe it again. Incredible, after ten years of this, I still try to deny my sister's mental illness.
I sink down in my seat, hoping that she won't see me; that she won't call out. I don't want anyone to know she knows me.
"God, why did this happen to me, to my family, to her? And why can't we stop her deterioration? I can't, we can't force her to take her medication. In time, when the paranoia takes over and the hallucinations become constant, the cops will come and take her away; then she'll be hospitalized. Then she'll get the medication she needs. But why, God, does it have to get that bad? It humiliates her. I know it does. I know that someplace inside of her she is aware of all that is happening and it tears at her soul."
"Do you hear me, God, when I pray for her? Sometimes I fear that you're just standing by, watching. But other times, I know you're not. How else could she have come through the dangerous hours and places she's been? But God, it seems like such a waste. So much intelligence. So much creativity. So much willingness to love and be loved-all fragmented and twisted like a madman's art. If I had your power, I would make her illness go away."
The light changes to green. I hit the gas pedal a little harder than usual and speed across the intersection, seeking the safety of the next block and my own life. I put houses and trees between her and me. But it doesn't work; my thoughts are still back there on that corner with my sister.
"I know she's lonely, God. Maybe that's why she's on the street. Maybe she's trying desperately to make a connection with someone, something-trying to stay afloat, hoping that just being with people will give her a tiny hold on reality. Maybe, that's why she phones me so often and everyone else she knows-everyone else who will listen. I wish I could listen more, God. I do listen for a little while. But then, you know, she says those things, those mean, vicious things. She puts her finger in my open wounds. How does she do that? Why do you let her? What good does it serve? I get so mad and say things back. Then she gets angry. Funny, there's nothing delusional about her when she's angry. Does she do that on purpose? Is it another way to stay in touch? Sounds stupid, sound like there should be a better way, but it also sound possible. Human beings are so complex -- not at all like the people on television or in books."
I park the car and get out, slamming the door. "God, I hate her. I hate her because she makes every family gathering so uncomfortable. I hate her because of the vicious things she says. I hate her because...." The concrete at my feet leads to my class and my orderly and safe life, but I can't take that path just yet. I lean against the car and frowning, I bow my head.
"God, I hate her most of all because she shows me up for what I really am -- a phony. I don't love, do I? I trade affection. If people are kind to me I return their kindness. Oh, sometimes I lend them kindness first, but if they don't return it, it's goodbye. It's not supposed to be that way, God, is it? When you said love one another, you meant be committed to their welfare even if they aren't or they can't be committed to ours. My sister can't love me right now. Maybe, someplace inside her, she wants to, but I see that she can't."
I chew my lip as I lift my eyes from the ground to the great buildings of the college campus before me. Then, looking beyond them, I see the immense blue sky. I hesitate, afraid of my next thought, but then decide it is what I want.
"Lord, teach me to love her. Really love her. But Lord, help me to be wise in my loving. Don't let me think I can meet all her needs. They're too vast. Don't let me think that loving her will cure her. Instead let me be humble, satisfied to help in the small ways you show me. And don't let me expect gratitude. Remind me that it's enough to know that I am pleasing you. Lord, let me rest her present and her future in your hands. Help me to believe that all of this is fitting into your plan and when I forget these things, Lord squeeze my hand."
I adjust my books and start off for class. As I walk, I decide that when I get home I'll call my sister. This time I'll reach out for her.
She's standing on the corner, talking to the wind. She isn't dressed badly, not like the "street people" around her. Her hair is combed and dyed a natural shade of blonde. I let out a breath. At least her appearance is still neat, still normal. But for how long? If the past can foretell the future -- only a few more months. I tell myself that if you just saw her you wouldn't think there was anything wrong with her. It's only the odd things she says or shouts to the people passing by, or to herself, that make strangers pull their children closer. I comfort myself with this lie, this nonsense, and I almost believe it again. Incredible, after ten years of this, I still try to deny my sister's mental illness.
I sink down in my seat, hoping that she won't see me; that she won't call out. I don't want anyone to know she knows me.
"God, why did this happen to me, to my family, to her? And why can't we stop her deterioration? I can't, we can't force her to take her medication. In time, when the paranoia takes over and the hallucinations become constant, the cops will come and take her away; then she'll be hospitalized. Then she'll get the medication she needs. But why, God, does it have to get that bad? It humiliates her. I know it does. I know that someplace inside of her she is aware of all that is happening and it tears at her soul."
"Do you hear me, God, when I pray for her? Sometimes I fear that you're just standing by, watching. But other times, I know you're not. How else could she have come through the dangerous hours and places she's been? But God, it seems like such a waste. So much intelligence. So much creativity. So much willingness to love and be loved-all fragmented and twisted like a madman's art. If I had your power, I would make her illness go away."
The light changes to green. I hit the gas pedal a little harder than usual and speed across the intersection, seeking the safety of the next block and my own life. I put houses and trees between her and me. But it doesn't work; my thoughts are still back there on that corner with my sister.
"I know she's lonely, God. Maybe that's why she's on the street. Maybe she's trying desperately to make a connection with someone, something-trying to stay afloat, hoping that just being with people will give her a tiny hold on reality. Maybe, that's why she phones me so often and everyone else she knows-everyone else who will listen. I wish I could listen more, God. I do listen for a little while. But then, you know, she says those things, those mean, vicious things. She puts her finger in my open wounds. How does she do that? Why do you let her? What good does it serve? I get so mad and say things back. Then she gets angry. Funny, there's nothing delusional about her when she's angry. Does she do that on purpose? Is it another way to stay in touch? Sounds stupid, sound like there should be a better way, but it also sound possible. Human beings are so complex -- not at all like the people on television or in books."
I park the car and get out, slamming the door. "God, I hate her. I hate her because she makes every family gathering so uncomfortable. I hate her because of the vicious things she says. I hate her because...." The concrete at my feet leads to my class and my orderly and safe life, but I can't take that path just yet. I lean against the car and frowning, I bow my head.
"God, I hate her most of all because she shows me up for what I really am -- a phony. I don't love, do I? I trade affection. If people are kind to me I return their kindness. Oh, sometimes I lend them kindness first, but if they don't return it, it's goodbye. It's not supposed to be that way, God, is it? When you said love one another, you meant be committed to their welfare even if they aren't or they can't be committed to ours. My sister can't love me right now. Maybe, someplace inside her, she wants to, but I see that she can't."
I chew my lip as I lift my eyes from the ground to the great buildings of the college campus before me. Then, looking beyond them, I see the immense blue sky. I hesitate, afraid of my next thought, but then decide it is what I want.
"Lord, teach me to love her. Really love her. But Lord, help me to be wise in my loving. Don't let me think I can meet all her needs. They're too vast. Don't let me think that loving her will cure her. Instead let me be humble, satisfied to help in the small ways you show me. And don't let me expect gratitude. Remind me that it's enough to know that I am pleasing you. Lord, let me rest her present and her future in your hands. Help me to believe that all of this is fitting into your plan and when I forget these things, Lord squeeze my hand."
I adjust my books and start off for class. As I walk, I decide that when I get home I'll call my sister. This time I'll reach out for her.
Saturday, November 26, 2011
Providing A Future
One of the most troubling questions the parent of a mental health consumer faces is how to provide for the child after they are gone. Fortunately the law provides many effective instruments to deal with these problems. These instruments were the theme of NAMI-NYC Metro’s June 13th meeting, which was held at the Community Church. There were three speakers at the meeting: attorneys Robert Freeman and Martin Petroff and a volunteer with personal experience Celeste Wallin.
Freeman spoke on how to establish a trust for a mental health consumer. Under a trust arrangement, property is given to a trustee for the benefit of a named party. This allows the recipient to receive income from the trust while the property remains in the hands of the trustee. One type of trust called a Supplemental Needs Trust can be created so that a person’s income will not generally count in determining eligibility for government benefits.
Under a Supplemental Needs Trust a trustee under direction pays out income for the disabled person to supplement their government benefits. The theory is benefits pay for food and shelter while the trust pays for extras such as a television set, a computer or even a vacation. The trust document can spell out what the income can be used for.
There are various types of trusts. A Living Trust is created during the lifetime of the maker of the trust while a Testamentary Trust is established by a will. A Discretionary Trust is set up to protect the beneficiary. It allows the trustee at his discretion to cut off funds to the beneficiary. This is especially valuable for a mental health consumer who is generally stable but who can at times decompensate. During these periods the trustee can cut off funds to the consumer who does not have good judgment.
Dealing with decompensation is a concern of Wallin who is a trustee of a Living Trust established by her father for her siblings. All the children with the exception of Wallin suffer from bipolar disease. She administers the trust in consultation with her siblings but Wallin has the final word.
If a properly drawn trust can provide income for the mental health consumer there are legal documents that can protect the person if they become incompetent to manage their own affairs. Petroff discussed Advance Directives documents where a person states what kind of medical treatment they want to have when they become incompetent to manage their own affairs. There is a psychiatric Advance Directive but it is very new and it is not clear how the courts will honor it in issues involving involuntary treatment and commitment. As part of the Advance Directive a healthcare proxy should be created as well. The proxy or agent is authorized to make healthcare decisions when the person is incompetent. Parents may want to also create a power of attorney for a consumer. Under a power of attorney, an agent is created to manage financial affairs.
After the meeting, a lively question period was held. There, the speakers stressed the importance for parents to have a plan to protect the consumer. It is wise to consult a lawyer in drawing up the plans. The meeting provided valuable hope to parents and other relatives of mental health consumers. They now have solid information to plan for their child’s future.
Freeman spoke on how to establish a trust for a mental health consumer. Under a trust arrangement, property is given to a trustee for the benefit of a named party. This allows the recipient to receive income from the trust while the property remains in the hands of the trustee. One type of trust called a Supplemental Needs Trust can be created so that a person’s income will not generally count in determining eligibility for government benefits.
Under a Supplemental Needs Trust a trustee under direction pays out income for the disabled person to supplement their government benefits. The theory is benefits pay for food and shelter while the trust pays for extras such as a television set, a computer or even a vacation. The trust document can spell out what the income can be used for.
There are various types of trusts. A Living Trust is created during the lifetime of the maker of the trust while a Testamentary Trust is established by a will. A Discretionary Trust is set up to protect the beneficiary. It allows the trustee at his discretion to cut off funds to the beneficiary. This is especially valuable for a mental health consumer who is generally stable but who can at times decompensate. During these periods the trustee can cut off funds to the consumer who does not have good judgment.
Dealing with decompensation is a concern of Wallin who is a trustee of a Living Trust established by her father for her siblings. All the children with the exception of Wallin suffer from bipolar disease. She administers the trust in consultation with her siblings but Wallin has the final word.
If a properly drawn trust can provide income for the mental health consumer there are legal documents that can protect the person if they become incompetent to manage their own affairs. Petroff discussed Advance Directives documents where a person states what kind of medical treatment they want to have when they become incompetent to manage their own affairs. There is a psychiatric Advance Directive but it is very new and it is not clear how the courts will honor it in issues involving involuntary treatment and commitment. As part of the Advance Directive a healthcare proxy should be created as well. The proxy or agent is authorized to make healthcare decisions when the person is incompetent. Parents may want to also create a power of attorney for a consumer. Under a power of attorney, an agent is created to manage financial affairs.
After the meeting, a lively question period was held. There, the speakers stressed the importance for parents to have a plan to protect the consumer. It is wise to consult a lawyer in drawing up the plans. The meeting provided valuable hope to parents and other relatives of mental health consumers. They now have solid information to plan for their child’s future.
Thursday, November 10, 2011
Coordinated Children's Services Initiative
Imagine yourself as the parent of a child who has just been diagnosed as ADHD or Bipolar. Imagine having never heard these terms before. Imagine the administration for Children’s Services investigative team coming to your home to inquire about your ability to parent your child. Imagine the Board of Education telling you that your child cannot handle the “regular education” setting and needs to be evaluated for special education.
Now imagine that all of these things are happening at the same time. How might you feel? Confused. Intimidated. Frustrated. Angry. Scared. It is important to realize that this is happening to many children and families throughout New York City. In this type of situation, both communication and collaboration between child-serving systems must be encouraged.
There is a new and exciting collaboration between the Manhattan Parent Resource Center and the Coordinated Children’s Services Initiative that is working hard to decrease the negative experiences families have with child-serving systems. It is the mission of both the Coordinated Children’s Services Initiative and the Manhattan Parent Resource Center to work closely with families who are involved with multiple systems and are in need of assistance and/or encouragement while navigating these large child-serving groups. Through advocacy and a Manhattan Family Network (strength-based assessment) families are reporting that their situation becomes more clear and they become motivated to take steps towards positive change for their families.
Let us look at an example. A fifteen-year-old has behavioral outbursts at school. He is constantly in fights and disruptive in class. One day a teacher grabs his arm to redirect him. The child reacts violently striking the teacher. The teacher presses charges and the child is expelled from school. The child’s mother is worried, but is not sure what to do or where to turn. She is working full-time and is under a lot of pressure. She is a single parent and she must not lose her job. After the assault charges are filed, the Department of Juvenile Justice becomes involved with the case. The child must do community service and go to counseling to focus on anger management. In addition, now that the case has received so much attention, the Administration for Children’s Services (ACS) has noticed that the child missed numerous days of school. ACS cites the child’s mother for educational neglect. This increases the mother’s stress and she is feeling frustrated and extremely overwhelmed.
This is a common scenario that involves many systems. Let’s see how it involves all social systems. We must first consider or assess the psychological make-up of the child and determine at what point we need to make a proper intervention. The parent contacts the Parent Resource Center (a center that prides itself in educating parents on their rights and current child-serving policies and supporting parents as they navigate systems) and says, “I can’t take it anymore. My son is out of control. He was kicked out of school. Now they are trying to blame me for it. I didn’t do anything wrong. He hit the teacher and the Juvenile Justice system is involved now. I don’t want my son to be locked up. What should I do?”
After the parent’s acute anxieties are quelled, the parent advocate invites them to a support group at the center and redirects them to a new initiative in Manhattan known as the Coordinated Children’s Services Initiative (CCSI). This is a process that deals with families whose children are involved with multiple macro systems such as the Board of Education, Juvenile Justice, Mental Health and/or Child Welfare. Once the CCSI team is involved, a Family Network is developed to ensure that all systems continue to share information in a constructive manner to reach the needs that the family has identified themselves. Network is a process that is strength-based and family driven. Network also utilizes the wrap-around process to create a “support circle” for the family. When a family begins the Network process, a parent advocate becomes involved. The parent advocate acts as a liaison for the parent and child in helping them navigate the various systems with which they are involved.
Through contacting the Mental Health Association of New York City, Inc. and the Manhattan Parent Resource Center or the Coordinated Children’s Services Initiative, families can begin to work with professionals together to strengthen their family and keep their child well. We are excited about the work we are doing at the Mental Health Association of New York City, Inc. Similar collaborations exist in the other boroughs of New York City. Contact names are as follows:
* Manhattan—CCSI Coordinator Michelle Munson, 212-254-0333 ext.240; Manhattan Parent Resource Center—Terril Pile
* Brooklyn—CCSI Coordinator Dolores Tibbets, 212-254-0333 ext.220; Brooklyn Parent Resource Center, 718-604-8800—Maxine Barnett
* Bronx—CCSI Coordinator Annabella Escobar, 212-254-0333 ext.250; Bronx Parent Resource Center, 718-731-4673—Bernadine Meeks
* Queens—CCSI Coordinator Michelle Munson, 212-254-0333 ext.240; Queens Parent Resource Center, 718-526-0722 ext.235—Ceceile Green
* Plans for the initiative are being developed in Staten Island
Now imagine that all of these things are happening at the same time. How might you feel? Confused. Intimidated. Frustrated. Angry. Scared. It is important to realize that this is happening to many children and families throughout New York City. In this type of situation, both communication and collaboration between child-serving systems must be encouraged.
There is a new and exciting collaboration between the Manhattan Parent Resource Center and the Coordinated Children’s Services Initiative that is working hard to decrease the negative experiences families have with child-serving systems. It is the mission of both the Coordinated Children’s Services Initiative and the Manhattan Parent Resource Center to work closely with families who are involved with multiple systems and are in need of assistance and/or encouragement while navigating these large child-serving groups. Through advocacy and a Manhattan Family Network (strength-based assessment) families are reporting that their situation becomes more clear and they become motivated to take steps towards positive change for their families.
Let us look at an example. A fifteen-year-old has behavioral outbursts at school. He is constantly in fights and disruptive in class. One day a teacher grabs his arm to redirect him. The child reacts violently striking the teacher. The teacher presses charges and the child is expelled from school. The child’s mother is worried, but is not sure what to do or where to turn. She is working full-time and is under a lot of pressure. She is a single parent and she must not lose her job. After the assault charges are filed, the Department of Juvenile Justice becomes involved with the case. The child must do community service and go to counseling to focus on anger management. In addition, now that the case has received so much attention, the Administration for Children’s Services (ACS) has noticed that the child missed numerous days of school. ACS cites the child’s mother for educational neglect. This increases the mother’s stress and she is feeling frustrated and extremely overwhelmed.
This is a common scenario that involves many systems. Let’s see how it involves all social systems. We must first consider or assess the psychological make-up of the child and determine at what point we need to make a proper intervention. The parent contacts the Parent Resource Center (a center that prides itself in educating parents on their rights and current child-serving policies and supporting parents as they navigate systems) and says, “I can’t take it anymore. My son is out of control. He was kicked out of school. Now they are trying to blame me for it. I didn’t do anything wrong. He hit the teacher and the Juvenile Justice system is involved now. I don’t want my son to be locked up. What should I do?”
After the parent’s acute anxieties are quelled, the parent advocate invites them to a support group at the center and redirects them to a new initiative in Manhattan known as the Coordinated Children’s Services Initiative (CCSI). This is a process that deals with families whose children are involved with multiple macro systems such as the Board of Education, Juvenile Justice, Mental Health and/or Child Welfare. Once the CCSI team is involved, a Family Network is developed to ensure that all systems continue to share information in a constructive manner to reach the needs that the family has identified themselves. Network is a process that is strength-based and family driven. Network also utilizes the wrap-around process to create a “support circle” for the family. When a family begins the Network process, a parent advocate becomes involved. The parent advocate acts as a liaison for the parent and child in helping them navigate the various systems with which they are involved.
Through contacting the Mental Health Association of New York City, Inc. and the Manhattan Parent Resource Center or the Coordinated Children’s Services Initiative, families can begin to work with professionals together to strengthen their family and keep their child well. We are excited about the work we are doing at the Mental Health Association of New York City, Inc. Similar collaborations exist in the other boroughs of New York City. Contact names are as follows:
* Manhattan—CCSI Coordinator Michelle Munson, 212-254-0333 ext.240; Manhattan Parent Resource Center—Terril Pile
* Brooklyn—CCSI Coordinator Dolores Tibbets, 212-254-0333 ext.220; Brooklyn Parent Resource Center, 718-604-8800—Maxine Barnett
* Bronx—CCSI Coordinator Annabella Escobar, 212-254-0333 ext.250; Bronx Parent Resource Center, 718-731-4673—Bernadine Meeks
* Queens—CCSI Coordinator Michelle Munson, 212-254-0333 ext.240; Queens Parent Resource Center, 718-526-0722 ext.235—Ceceile Green
* Plans for the initiative are being developed in Staten Island
Tuesday, November 8, 2011
Mother of Suicide Victim Speaks Out
Susan Harrington related the painful details of the death of her son Barrett at the recent press conference in Albany. Barrett was diagnosed with a serious mental illness during a recent incarceration at Riker’s Island for drug-dependent related crimes. He was released from Riker’s without a comprehensive treatment plan for his mental health needs, save for a three-day supply of antipsychotic medications. Barrett, because he did not have Medicaid eligibility, applied for Medicaid benefits after his release and had to endure long waits in hospital emergency rooms and pharmacies just to renew a five-day supply of medication. Despite these limited measures, his mental health deteriorated and he attempted suicide. He was admitted to a psychiatric inpatient unit only at his mother’s insistence and was discharged two weeks later without a comprehensive treatment plan. Left without necessary supports and services, he returned to drug use. He committed suicide shortly afterward at age 24. Five days after his suicide, Mrs. Harrington was notified that her son’s Medicaid application had been approved.
Ms. Harrington called for the passage of legislation to provide for 90 days of presumptive Medicaid eligibility for individuals leaving hospitals and correctional facilities. "I believe my son’s tragic death might well have been avoided had he been able to get the help he so badly needed and sought repeatedly," she said. "State government must act quickly to allow people stuck in the revolving door of the mental heath and correctional systems to promptly get the medication and services they need when returning to the community."
Ms. Harrington was joined by a large coalition of mental health advocates supporting reform. Presumptive Medicaid Eligibility will go beyond the Medication Grant program included in "Kendra’s Law" by providing access to all psychiatric services including medication, housing, comprehensive case management, day treatment and intensive rehabilitation programs. An individual will be able to receive services under Medicaid while an eligibility determination is being made—a process that routinely takes 60 to 90 days.
"A Medication Grants program with limited benefits and no guarantee that it will be available in each community of the state makes no sense from either a clinical or government efficiency standpoint," according to Susan Batkin, Director of the Mental Health Project at the Urban Justice Center in New York City, and coordinator for the Presumptive Medicaid Eligibility Coalition. "The existing Medicaid program is already available in all parts of the State, and adding additional state bureaucrats and hiring benefits managers to administer this new system merely diverts resources away from the patient into administration."
Harvey Rosenthal, Executive Director of the New York Association of Psychiatric Rehabilitation Services (NYAPRS), and chair of the Mental Health Action Network, added, "People in crisis need much more than just a pill. Presumptive Medicaid Eligibility will instead offer access to the full range of Medicaid-funded housing, treatment and support services we know are necessary to fully restore these persons to productive community life."
Ms. Harrington called for the passage of legislation to provide for 90 days of presumptive Medicaid eligibility for individuals leaving hospitals and correctional facilities. "I believe my son’s tragic death might well have been avoided had he been able to get the help he so badly needed and sought repeatedly," she said. "State government must act quickly to allow people stuck in the revolving door of the mental heath and correctional systems to promptly get the medication and services they need when returning to the community."
Ms. Harrington was joined by a large coalition of mental health advocates supporting reform. Presumptive Medicaid Eligibility will go beyond the Medication Grant program included in "Kendra’s Law" by providing access to all psychiatric services including medication, housing, comprehensive case management, day treatment and intensive rehabilitation programs. An individual will be able to receive services under Medicaid while an eligibility determination is being made—a process that routinely takes 60 to 90 days.
"A Medication Grants program with limited benefits and no guarantee that it will be available in each community of the state makes no sense from either a clinical or government efficiency standpoint," according to Susan Batkin, Director of the Mental Health Project at the Urban Justice Center in New York City, and coordinator for the Presumptive Medicaid Eligibility Coalition. "The existing Medicaid program is already available in all parts of the State, and adding additional state bureaucrats and hiring benefits managers to administer this new system merely diverts resources away from the patient into administration."
Harvey Rosenthal, Executive Director of the New York Association of Psychiatric Rehabilitation Services (NYAPRS), and chair of the Mental Health Action Network, added, "People in crisis need much more than just a pill. Presumptive Medicaid Eligibility will instead offer access to the full range of Medicaid-funded housing, treatment and support services we know are necessary to fully restore these persons to productive community life."
Wednesday, October 26, 2011
Destigmatizing Mental Illness Through The Schools
How many of us have at one time or another sighed a very long sigh and said, "What if?" As the parent of a son with three psychiatric diagnoses, schizophrenia, OCD, and panic disorder, my "what ifs" center around him. What if we had been more knowledgeable about mental illness and recognized Doug's symptoms early on? What if he had been diagnosed correctly and treated immediately? What if his friends hadn't deserted him? The list of "could-haves" and "might-have-beens" goes on and on accompanied by the requisite recriminations and self-doubt.
I still remember believing that Doug had an undiagnosed attention deficit disorder. Why he barely focused on anything I said. It got so bad that if I had to tell him something really important, I would have to hold his head to get him to look at me and then over enunciate every word. It was like speaking to someone who was deaf. Even then I wasn't sure that what I had to say was really penetrating that clearly preoccupied brain of his.
And I remember, too, that once he had his first psychotic break and there was no denying there was something very, very wrong, his friends didn't know what to do either. They were frightened and distraught, but no one would give them any information. What's wrong with Doug? A deafening silence because after all, nothing could be revealed. Confidentiality, you know, was the way guidance counselors and school psychologists explained it.
But, of course, there is no going backward. We all have to accept where we are at the moment and look ahead to what we hope will be a better life for ourselves, our family members, and everyone else with a major mental illness. And that brings me to what for me has become a consuming passion: the mission to change attitudes about mental illness by educating all children and teens about these devastating disorders through the schools.
Beginning in 1993 with matching grants from NAMI and NAMI-NYS, I worked with other teachers with mental illness in their families to develop lesson plans on mental illness for three grade levels: upper elementary, middle school, and high school. These lessons humanized serious mental illness. Through sharing our family stories, students learned not just the facts about mental illness, but also the emotional toll these crippling illnesses take on everyone involved.
Elementary school students learned about Lisa whose brother had recently been hospitalized with a serious psychiatric disorder. What, she wondered, had happened to her brother who had always been so close and now spent much of his day locked in his room? And what should she do about classmates who were overheard making fun of her brother and calling him "a mental?"
Middle school students learned about a high achieving high school student who began to unravel during a summer at camp. The aftermath of a fight with another camper took over his life, and what should have been a meaningless scrape over nothing very important became something that preoccupied his every waking hour. He would sue his attacker, he would sue the camp, and he wouldn't rest until justice had been done. His paranoia and obsessive behavior finally came to a head with him cowering in the corner of his room in a psychiatric hospital.
High school students were asked to examine their attitudes and those of their community about mental illness. What words do they associate with mental illness? What impact might this kind of stigmatizing language have on someone with a mental illness? How would it affect their family? How would you and others feel if a group home moved into your community? How would the people in the group home feel? And through discussion and anecdotes students learn the symptoms of schizophrenia and the impact of stigma. They are clearly moved as they hear about a formerly popular young man whose friends thoughtlessly desert him when he develops the symptoms of schizophrenia.
The popularity of these lessons was such that in 1998 they were expanded as part of NAMI's campaign to end discrimination. They now contain posters, games, follow-up activities tied to the general curriculum as well as additional lessons. The posters and games proved to be a particular hit. A cartoon brain with a bandage and an ice pack on its head is at the top of the elementary school poster. A caption beside it reads: "Brains can get sick, but they can also get well again." And "The Brain Game," a competitive board game which rewards stigma busting and penalizes stigmatizing behavior, has been especially popular with middle school students.
Happily the popularity of "Breaking the Silence" (BTS) extends beyond. For example, this past year all health education administrators in the New York Public Schools began the school year with a workshop which featured our lessons. They were also featured on an Emmy Award nominated TV program, The God Squad, which is sponsored by the Catholic Diocese. Emails have come from as far away as Japan requesting information about BTS.
Mental health professionals have taken a special interest in our lessons. Last year the New York State Office of Mental Health made "Breaking the Silence" available to all health teachers and ancillary personnel in the state free of charge. We are also happy to report that we have just received an order from the Alabama Department of Mental Health and Retardation for 4,000 of our lesson plans as part of a statewide anti-stigma campaign, one of many out of state orders.
I like to dream of the time when young people will recoil when they hear stigmatizing remarks about mental illness in the same way they respond with disgust to racist or anti-Semitic slurs. And I like to hope that the time will come, too, when people will recognize the early onset of symptoms in themselves and get treatment because they have learned about mental illness in a class at school.
Impossible dream? I don't think so. Clearly from the response we have received we know that educating students about mental illness is an idea whose time has come.
I still remember believing that Doug had an undiagnosed attention deficit disorder. Why he barely focused on anything I said. It got so bad that if I had to tell him something really important, I would have to hold his head to get him to look at me and then over enunciate every word. It was like speaking to someone who was deaf. Even then I wasn't sure that what I had to say was really penetrating that clearly preoccupied brain of his.
And I remember, too, that once he had his first psychotic break and there was no denying there was something very, very wrong, his friends didn't know what to do either. They were frightened and distraught, but no one would give them any information. What's wrong with Doug? A deafening silence because after all, nothing could be revealed. Confidentiality, you know, was the way guidance counselors and school psychologists explained it.
But, of course, there is no going backward. We all have to accept where we are at the moment and look ahead to what we hope will be a better life for ourselves, our family members, and everyone else with a major mental illness. And that brings me to what for me has become a consuming passion: the mission to change attitudes about mental illness by educating all children and teens about these devastating disorders through the schools.
Beginning in 1993 with matching grants from NAMI and NAMI-NYS, I worked with other teachers with mental illness in their families to develop lesson plans on mental illness for three grade levels: upper elementary, middle school, and high school. These lessons humanized serious mental illness. Through sharing our family stories, students learned not just the facts about mental illness, but also the emotional toll these crippling illnesses take on everyone involved.
Elementary school students learned about Lisa whose brother had recently been hospitalized with a serious psychiatric disorder. What, she wondered, had happened to her brother who had always been so close and now spent much of his day locked in his room? And what should she do about classmates who were overheard making fun of her brother and calling him "a mental?"
Middle school students learned about a high achieving high school student who began to unravel during a summer at camp. The aftermath of a fight with another camper took over his life, and what should have been a meaningless scrape over nothing very important became something that preoccupied his every waking hour. He would sue his attacker, he would sue the camp, and he wouldn't rest until justice had been done. His paranoia and obsessive behavior finally came to a head with him cowering in the corner of his room in a psychiatric hospital.
High school students were asked to examine their attitudes and those of their community about mental illness. What words do they associate with mental illness? What impact might this kind of stigmatizing language have on someone with a mental illness? How would it affect their family? How would you and others feel if a group home moved into your community? How would the people in the group home feel? And through discussion and anecdotes students learn the symptoms of schizophrenia and the impact of stigma. They are clearly moved as they hear about a formerly popular young man whose friends thoughtlessly desert him when he develops the symptoms of schizophrenia.
The popularity of these lessons was such that in 1998 they were expanded as part of NAMI's campaign to end discrimination. They now contain posters, games, follow-up activities tied to the general curriculum as well as additional lessons. The posters and games proved to be a particular hit. A cartoon brain with a bandage and an ice pack on its head is at the top of the elementary school poster. A caption beside it reads: "Brains can get sick, but they can also get well again." And "The Brain Game," a competitive board game which rewards stigma busting and penalizes stigmatizing behavior, has been especially popular with middle school students.
Happily the popularity of "Breaking the Silence" (BTS) extends beyond. For example, this past year all health education administrators in the New York Public Schools began the school year with a workshop which featured our lessons. They were also featured on an Emmy Award nominated TV program, The God Squad, which is sponsored by the Catholic Diocese. Emails have come from as far away as Japan requesting information about BTS.
Mental health professionals have taken a special interest in our lessons. Last year the New York State Office of Mental Health made "Breaking the Silence" available to all health teachers and ancillary personnel in the state free of charge. We are also happy to report that we have just received an order from the Alabama Department of Mental Health and Retardation for 4,000 of our lesson plans as part of a statewide anti-stigma campaign, one of many out of state orders.
I like to dream of the time when young people will recoil when they hear stigmatizing remarks about mental illness in the same way they respond with disgust to racist or anti-Semitic slurs. And I like to hope that the time will come, too, when people will recognize the early onset of symptoms in themselves and get treatment because they have learned about mental illness in a class at school.
Impossible dream? I don't think so. Clearly from the response we have received we know that educating students about mental illness is an idea whose time has come.
Thursday, October 20, 2011
Answers From Margaret Ray's Mother
We all remember Margaret Ray who became fodder for the tabloid media for becoming obsessed with talk-show host David Letterman. She repeatedly broke into his home in New Canaan, Conn., camped out on his tennis court and on one occasion stole his Porsche. Ray had schizophrenia like two of her brothers. And like them, she also commit suicide. Her tale was tragic behind all of the kidding. New York City Voices' Editor Danny Frey had the pleasure of meeting Loretta Duvall, Ray's mother, at the Department of Mental Health, Mental Retardation and Alcoholism Service's Seventh Annual Mental Hygiene Awards last year, and the following questions were answered through an Internet correspondence.
Question: What was a major indication to you that something was mentally wrong with your daughter?
Answer: Margaret showed a lack of good judgment in her 18th, 19th and 20th years. She made irresponsible decisions. I attributed this to changes in the family lifestyle: my contested divorce, her entering college, sale of home. I did not recognize this behavior as anything other than a reaction to stress.
Question: After you realized that Margaret had a mental problem, what did you and your family do?
Answer: Margaret was married and showed a strong devotion to her husband at the time. I realized that she needed professional care. I could do nothing. She distanced herself from me and her family. Her husband held me responsible for her behavior. There was very little that I could do. I continued to love her, tolerate her behavior and once took her for counseling. She lived many miles away.
Question: How often did you visit Margaret in the mental hospital?
Answer: Rarely. I did visit at Fairfield Hills, CT and I went to Niantic State Prison, but she refused to see me. I also visited her in Kissimmee, FL Prison. She was in prison hospitals throughout the country.
Question: It seemed like Margaret was very loud and vocal when she was sick (many schizophrenics are quiet and introverted). Do you think someone with schizophrenia would get the necessary treatment as fast if they were quiet and sick?
Answer: I don't know, Dan. It would be an interesting study. I think firmly that people who are mentally ill and commit publicized crimes get lots of attention. The public seems to become titillated about viewing and reading about this. Strange.
Question: Were you afraid that Margaret might take her own life?
Answer: I never thought so. She as a whole was a positive thinker, resourceful and creative.
Question: Describe how you felt the first time you saw Margaret on television in connection with stalking David Letterman.
Answer: I first heard about Margarets escapade when I was notified by the police at my home. I do not recall the very first time I saw her on TV. But I did. Most of the time I was informed of her appearances. I have had copies made of some of the publicity. It was national and international news. Until her death no one publicly defended her (there were several judges and law enforcement people who tried to help). It was a long, long tragedy.
Question: What made you finally agree to take your family's story of schizophrenia to the public, not just Margaret's, but your other children's as well?
Answer: I committed to giving up my privacy (which is dear to me) and my pride (which helped no one) to try to bring the pain, the shame and guilt, the disdain and stigma out into the open. I want to do this with love, respect, facts and figures and mostly education.
Question: What was a major indication to you that something was mentally wrong with your daughter?
Answer: Margaret showed a lack of good judgment in her 18th, 19th and 20th years. She made irresponsible decisions. I attributed this to changes in the family lifestyle: my contested divorce, her entering college, sale of home. I did not recognize this behavior as anything other than a reaction to stress.
Question: After you realized that Margaret had a mental problem, what did you and your family do?
Answer: Margaret was married and showed a strong devotion to her husband at the time. I realized that she needed professional care. I could do nothing. She distanced herself from me and her family. Her husband held me responsible for her behavior. There was very little that I could do. I continued to love her, tolerate her behavior and once took her for counseling. She lived many miles away.
Question: How often did you visit Margaret in the mental hospital?
Answer: Rarely. I did visit at Fairfield Hills, CT and I went to Niantic State Prison, but she refused to see me. I also visited her in Kissimmee, FL Prison. She was in prison hospitals throughout the country.
Question: It seemed like Margaret was very loud and vocal when she was sick (many schizophrenics are quiet and introverted). Do you think someone with schizophrenia would get the necessary treatment as fast if they were quiet and sick?
Answer: I don't know, Dan. It would be an interesting study. I think firmly that people who are mentally ill and commit publicized crimes get lots of attention. The public seems to become titillated about viewing and reading about this. Strange.
Question: Were you afraid that Margaret might take her own life?
Answer: I never thought so. She as a whole was a positive thinker, resourceful and creative.
Question: Describe how you felt the first time you saw Margaret on television in connection with stalking David Letterman.
Answer: I first heard about Margarets escapade when I was notified by the police at my home. I do not recall the very first time I saw her on TV. But I did. Most of the time I was informed of her appearances. I have had copies made of some of the publicity. It was national and international news. Until her death no one publicly defended her (there were several judges and law enforcement people who tried to help). It was a long, long tragedy.
Question: What made you finally agree to take your family's story of schizophrenia to the public, not just Margaret's, but your other children's as well?
Answer: I committed to giving up my privacy (which is dear to me) and my pride (which helped no one) to try to bring the pain, the shame and guilt, the disdain and stigma out into the open. I want to do this with love, respect, facts and figures and mostly education.
Tuesday, October 11, 2011
The Procreative Urge
Walking through Central Park I can’t help but think of babies. Moms and nannies push infants in strollers with a happy gleam in their eyes. I feel a silent moan ooze from my empty womb as my biological clock ticks. I get this baby urge every month or so, and it lasts from one hour up to one week. My desire to be a mother is becoming ever stronger as I near my thirtieth birthday.
There are many things for me to consider first. Although I’ve learned to handle my depression pretty well -- it is only with the help of my therapy sessions, Prozac and Wellbutrin. I’ve been on the meds for like two years now and they have helped me tremendously. But now that I’m thinking of becoming a mom -- I face the reality of having to go off medications to ensure a healthy pregnancy.
My rational side noses in and reminds me that I’m jumping the gun. I need to graduate college before I have a baby. My husband and I need to save money. We need to move out of the city. We need, we need, we need.
Yes, I realize it is not the perfect time for my husband and I to have a child yet. I know we would like to have the conditions just right, but I also know that we could end up waiting forever for the “perfect” conditions. I feel emotionally ready to have that new life inside of me, growing, feeding within me. Then I question my motives. Is the baby urge just the desire to be impregnated with some kind of new life? An urge to be filled with new possibility and potential? Perhaps it is an impulse to be filled with new creative power, a new story, or a new article?
No, I know it is more than that. I want someone to depend on me. I am ready to love and support another life.
With my desire to get pregnant one day in mind, my doctor and I decided to try lowering my dosage to see how I would react. My depression came back fast and strong. The old suicidal thoughts told me that any stress or challenge should cause me to just give up and die. It was back to regular dosage for me. I had to face the fact that maybe I’d never be able to go off medication. What about when my husband and I try to get pregnant?
There are no proven side effects on an unborn baby from the meds I’m taking, but why take a chance? My psychiatrist feels it’s best to go off my meds a month before trying to get pregnant and stay off them for at least the first trimester of pregnancy. Will I be able to stop medication and still feel okay?
My doctor thinks that the excitement of getting pregnant should be enough to keep me from feeling too depressed or hopeless. That sounds reasonable, but then other questions form in my mind. What if I get pregnant before I’m ready -- when I’m still on Prozac? What then? I always thought I could put off thinking about such matters, but what happens if the future turns out to be sooner than later? How will I face it? Will I be strong enough? Will I ever not need to medicate?
And then the deeper questions surface. Will I be a good mother? Will I pass on my illness to our children? I know I’ll be a good mom, but...wait, how can I know?
In session, I explore my questions. I realize that I’m obsessing again about my need for perfection. I’ve obsessed about my body, my beauty and my intellect. Now I’m obsessing about being the “perfect” mom. I’ve learned to face my desire to be the best in other areas of my life, and this awareness of my obsessiveness helps me to get past it. I will get past this, too. It’s good I’m facing a potential problem before it even occurs. There is no perfect mother. Just mothers doing their best and loving their children all that they can.
I do my practice now. Prepare myself. I am loving myself and accepting myself as much as possible. I will continue to grow in love and allow myself to be human. And I will be a wonderful mother. Not perfect, but very loving and forgiving -- as I have learned to be towards myself. And truthful at all times. And attentive. For my children, and God willing, for myself.
Ah. There it is again. The baby urge. The warmth flowing through my body and mind and soul. For now, I quench the feeling by writing, by giving birth to new stories and new ideas.
I give birth every day. I am nurtured and give nurturance. Today, I express my creative urges with words, letting them flow onto paper as leaves tumble through wheels of strollers in the park. Tomorrow, it may be my own womb that hums ands rolls and gurgles. It will gurgle out loud one day. Until then, I write. I type my words upon computer keys and quiet my urge to be the mother of new things.
The Procreative Urge
By Sheila Hageman
There are many things for me to consider first. Although I’ve learned to handle my depression pretty well -- it is only with the help of my therapy sessions, Prozac and Wellbutrin. I’ve been on the meds for like two years now and they have helped me tremendously. But now that I’m thinking of becoming a mom -- I face the reality of having to go off medications to ensure a healthy pregnancy.
My rational side noses in and reminds me that I’m jumping the gun. I need to graduate college before I have a baby. My husband and I need to save money. We need to move out of the city. We need, we need, we need.
Yes, I realize it is not the perfect time for my husband and I to have a child yet. I know we would like to have the conditions just right, but I also know that we could end up waiting forever for the “perfect” conditions. I feel emotionally ready to have that new life inside of me, growing, feeding within me. Then I question my motives. Is the baby urge just the desire to be impregnated with some kind of new life? An urge to be filled with new possibility and potential? Perhaps it is an impulse to be filled with new creative power, a new story, or a new article?
No, I know it is more than that. I want someone to depend on me. I am ready to love and support another life.
With my desire to get pregnant one day in mind, my doctor and I decided to try lowering my dosage to see how I would react. My depression came back fast and strong. The old suicidal thoughts told me that any stress or challenge should cause me to just give up and die. It was back to regular dosage for me. I had to face the fact that maybe I’d never be able to go off medication. What about when my husband and I try to get pregnant?
There are no proven side effects on an unborn baby from the meds I’m taking, but why take a chance? My psychiatrist feels it’s best to go off my meds a month before trying to get pregnant and stay off them for at least the first trimester of pregnancy. Will I be able to stop medication and still feel okay?
My doctor thinks that the excitement of getting pregnant should be enough to keep me from feeling too depressed or hopeless. That sounds reasonable, but then other questions form in my mind. What if I get pregnant before I’m ready -- when I’m still on Prozac? What then? I always thought I could put off thinking about such matters, but what happens if the future turns out to be sooner than later? How will I face it? Will I be strong enough? Will I ever not need to medicate?
And then the deeper questions surface. Will I be a good mother? Will I pass on my illness to our children? I know I’ll be a good mom, but...wait, how can I know?
In session, I explore my questions. I realize that I’m obsessing again about my need for perfection. I’ve obsessed about my body, my beauty and my intellect. Now I’m obsessing about being the “perfect” mom. I’ve learned to face my desire to be the best in other areas of my life, and this awareness of my obsessiveness helps me to get past it. I will get past this, too. It’s good I’m facing a potential problem before it even occurs. There is no perfect mother. Just mothers doing their best and loving their children all that they can.
I do my practice now. Prepare myself. I am loving myself and accepting myself as much as possible. I will continue to grow in love and allow myself to be human. And I will be a wonderful mother. Not perfect, but very loving and forgiving -- as I have learned to be towards myself. And truthful at all times. And attentive. For my children, and God willing, for myself.
Ah. There it is again. The baby urge. The warmth flowing through my body and mind and soul. For now, I quench the feeling by writing, by giving birth to new stories and new ideas.
I give birth every day. I am nurtured and give nurturance. Today, I express my creative urges with words, letting them flow onto paper as leaves tumble through wheels of strollers in the park. Tomorrow, it may be my own womb that hums ands rolls and gurgles. It will gurgle out loud one day. Until then, I write. I type my words upon computer keys and quiet my urge to be the mother of new things.
The Procreative Urge
By Sheila Hageman
Monday, October 10, 2011
A Pregnant Pause: Anti-Psychotic Medication And Growing A Baby
Whenever I attended a NAMI or NARSAD conference during the past ten years, I asked the medical panel the same question—albeit a hypothetical one for me at the time: Is it safe to take anti-psychotic medication if a woman is pregnant? Since the moment in April 1990 when I realized that I needed to stay on my medication for schizophrenia, I’ve feared getting pregnant while on Trilafon. It’s loomed like a teetering boulder poised atop a steep cliff and ready to roll who-knew-where. Would a developing fetus absorbing my prescribed pill be damaged at birth, harbor a time bomb of unknown suffering years down the road, or, my hope beyond hope, actually be healthy?
Until 1998, the responses I received at the conferences remained remarkably consistent with two replies: 1. Not much research has been done in this area, so not much is known; 2. The conventional wisdom is for women to go off their medications at least from conception until the first trimester when the major organs develop.
Great, I thought, I had finally accepted that I needed to stay on my medication only to find out if I wanted to grow a baby, I’d need to go off it. That thought scared me more than having a baby with birth defects. And it wasn’t just a weekend medication holiday—conceiving could take anywhere from six months to a year. Underneath my question sat relief that I didn’t really have to face the issue.
Then in 1998, I heard something different. I attended a NARSAD conference, asked my question of the panel and received the usual replies. But immediately following the session, three women walked over to speak to me. They all had daughters who were diagnosed with schizophrenia and who had given birth to healthy children. Two of the daughters became pregnant while on medication, and one daughter went off her medication but became psychotic after the baby was born.
Soon after the conference, I discovered that my gynecologist had worked with psychiatric patients on Mellaril or Haldol during her residency. She told me that these patients’ babies had been born healthy. According to my gynecologist, the most difficult pregnancies occurred when women went off their medications. “Being psychotic is more harmful to a fetus than anti-psychotic drugs,” she said.
She went on to explain that there usually was a difference in thinking between the ob-gyns and the psychiatrists—the ob-gyns preferred women to stay on their medication and the psychiatrists advised women to go off it initially. But, she explained, the differences between their thinking made sense. Since the women remained under their psychiatrists’ care, if the psychiatrists prescribed medication and the babies were born with birth defects, the psychiatrists were at risk for being liable. The ob-gyns were not. From the ob-gyn perspective, the psychiatrists in fact had little to risk because the ob-gyns knew they were delivering healthy babies with mothers on medication, and saw the distress to the fetus when a mother became psychotic going off her meds. Psychiatrists, who didn’t witness actual prenatal and birth experiences to assuage their thinking, tended to act with caution.
The information from my ob-gyn combined with the grandmothers’ stories left me feeling more helpful about conception and being pregnant while continuing my daily swallow of Trilafon. The possibility of my becoming a biological mother, however, remained a hypothetical issue.
Until a year later. I had finally entered a loving relationship with a man who wanted to marry me and have children. I knew little research had been conducted on anti-psychotic medication and pregnancy, primarily because researchers were reluctant to experiment with human fetuses and also because the number of women on these medications who become pregnant have been relatively few over the years. Still, I tried in earnest to discover what was known. Some studies were done with Haldol and rats, but I found virtually no information for Trilafon or any of the newer anti-psychotics.
When I married and decided to try to have a baby, my own psychiatrist advised me to go off my medication before conceiving and throughout the first trimester. But by then some younger psychiatrists were rethinking that caveat. The new approach believed that the greater risk involved stopping medication. More and more often doctors told me that my age, 40 at the time, was a greater risk for a healthy pregnancy than taking medication. I was elated to have encountered such a mainstream risk factor.
My husband and I decided to try and conceive while I continued to take Trilafon. When, much to our delight, I became pregnant, we faced one more hurdle we hadn’t anticipated. Our genetic counselor raised the possibility that my Trilafon dosage, which was effective with my pre-pregnancy blood levels, might not work when my blood volume increased during the second trimester. Fortunately, my regular dosage continued to work throughout my entire pregnancy and postpartum period.
Growing a baby while taking anti-psychotic medication can be a reality. I have only to hold my two-month-old daughter in my arms to know this is true—and how lucky I am to have benefited from both the serendipity of hearing other women’s experiences and the changing attitudes within the psychiatric community.
Until 1998, the responses I received at the conferences remained remarkably consistent with two replies: 1. Not much research has been done in this area, so not much is known; 2. The conventional wisdom is for women to go off their medications at least from conception until the first trimester when the major organs develop.
Great, I thought, I had finally accepted that I needed to stay on my medication only to find out if I wanted to grow a baby, I’d need to go off it. That thought scared me more than having a baby with birth defects. And it wasn’t just a weekend medication holiday—conceiving could take anywhere from six months to a year. Underneath my question sat relief that I didn’t really have to face the issue.
Then in 1998, I heard something different. I attended a NARSAD conference, asked my question of the panel and received the usual replies. But immediately following the session, three women walked over to speak to me. They all had daughters who were diagnosed with schizophrenia and who had given birth to healthy children. Two of the daughters became pregnant while on medication, and one daughter went off her medication but became psychotic after the baby was born.
Soon after the conference, I discovered that my gynecologist had worked with psychiatric patients on Mellaril or Haldol during her residency. She told me that these patients’ babies had been born healthy. According to my gynecologist, the most difficult pregnancies occurred when women went off their medications. “Being psychotic is more harmful to a fetus than anti-psychotic drugs,” she said.
She went on to explain that there usually was a difference in thinking between the ob-gyns and the psychiatrists—the ob-gyns preferred women to stay on their medication and the psychiatrists advised women to go off it initially. But, she explained, the differences between their thinking made sense. Since the women remained under their psychiatrists’ care, if the psychiatrists prescribed medication and the babies were born with birth defects, the psychiatrists were at risk for being liable. The ob-gyns were not. From the ob-gyn perspective, the psychiatrists in fact had little to risk because the ob-gyns knew they were delivering healthy babies with mothers on medication, and saw the distress to the fetus when a mother became psychotic going off her meds. Psychiatrists, who didn’t witness actual prenatal and birth experiences to assuage their thinking, tended to act with caution.
The information from my ob-gyn combined with the grandmothers’ stories left me feeling more helpful about conception and being pregnant while continuing my daily swallow of Trilafon. The possibility of my becoming a biological mother, however, remained a hypothetical issue.
Until a year later. I had finally entered a loving relationship with a man who wanted to marry me and have children. I knew little research had been conducted on anti-psychotic medication and pregnancy, primarily because researchers were reluctant to experiment with human fetuses and also because the number of women on these medications who become pregnant have been relatively few over the years. Still, I tried in earnest to discover what was known. Some studies were done with Haldol and rats, but I found virtually no information for Trilafon or any of the newer anti-psychotics.
When I married and decided to try to have a baby, my own psychiatrist advised me to go off my medication before conceiving and throughout the first trimester. But by then some younger psychiatrists were rethinking that caveat. The new approach believed that the greater risk involved stopping medication. More and more often doctors told me that my age, 40 at the time, was a greater risk for a healthy pregnancy than taking medication. I was elated to have encountered such a mainstream risk factor.
My husband and I decided to try and conceive while I continued to take Trilafon. When, much to our delight, I became pregnant, we faced one more hurdle we hadn’t anticipated. Our genetic counselor raised the possibility that my Trilafon dosage, which was effective with my pre-pregnancy blood levels, might not work when my blood volume increased during the second trimester. Fortunately, my regular dosage continued to work throughout my entire pregnancy and postpartum period.
Growing a baby while taking anti-psychotic medication can be a reality. I have only to hold my two-month-old daughter in my arms to know this is true—and how lucky I am to have benefited from both the serendipity of hearing other women’s experiences and the changing attitudes within the psychiatric community.
Thursday, September 15, 2011
Out to Prove Them Wrong
For the past year myself and others have been advocating for the housing for mentally ill adults with children. I've been told that dream will come true with funding from Mental Health. Up until now Mental Health has only provided housing for single adults only. Maybe their reasoning for this is that once a parent is stigmatized with being mentally disabled, someone figured we never would ever again be capable of taking care of our children.
I have two sons who spent years in foster care because no one believed or will ever believe that I am capable of taking care of my sons again. I'm out to prove them wrong. Even my own sister fought against the notion of me ever taking back my boys. They are now 18 and 20 years old, learning disabled and living with me in a studio apartment. I've been told that I took them back for selfish and monetary reasons since they both have SSI. But who knows better the pain of separation between mother and child?
I don't know my children anymore and they consider me someone not to be trusted or respected, having those notions reinforced by professionals and family. The stigma comes from those who don't believe the mentally ill will ever get better or be capable of doing anything more.
I'm proof otherwise. Yes, I still have issues. I'm still somewhat depressed, but I work part-time at P.A.L.S., a peer advocacy group on Staten Island. I'm somewhat active in politics, in church and in my life and I sing in the church choir. I may not be a successful CEO of a company, but I still am a success compared to what I was like a few years back and I have the potential for doing much, much more for myself, my family and others.
Despite those who stigmatize us or stare down at us in disgust, we are what we are. What the heck is normal anyway? Normal is boring. Normal doesn't make a difference. It conforms to society rather than reshapes it.
Mental illness is not necessarily a handicap. It opens doors of opportunity and hope. We can and will be a success if people truly support us, have patience and take us seriously. Life can be great for people like us, so don't give up in spite of ourselves or others!
I have two sons who spent years in foster care because no one believed or will ever believe that I am capable of taking care of my sons again. I'm out to prove them wrong. Even my own sister fought against the notion of me ever taking back my boys. They are now 18 and 20 years old, learning disabled and living with me in a studio apartment. I've been told that I took them back for selfish and monetary reasons since they both have SSI. But who knows better the pain of separation between mother and child?
I don't know my children anymore and they consider me someone not to be trusted or respected, having those notions reinforced by professionals and family. The stigma comes from those who don't believe the mentally ill will ever get better or be capable of doing anything more.
I'm proof otherwise. Yes, I still have issues. I'm still somewhat depressed, but I work part-time at P.A.L.S., a peer advocacy group on Staten Island. I'm somewhat active in politics, in church and in my life and I sing in the church choir. I may not be a successful CEO of a company, but I still am a success compared to what I was like a few years back and I have the potential for doing much, much more for myself, my family and others.
Despite those who stigmatize us or stare down at us in disgust, we are what we are. What the heck is normal anyway? Normal is boring. Normal doesn't make a difference. It conforms to society rather than reshapes it.
Mental illness is not necessarily a handicap. It opens doors of opportunity and hope. We can and will be a success if people truly support us, have patience and take us seriously. Life can be great for people like us, so don't give up in spite of ourselves or others!
Wednesday, September 14, 2011
When Going Back to School is Not Going On
September’s here. It’s back to school time for children and teens across the country. But for many, a return to school is an instigator of fear. For as long as she can remember, Holly * has been shy.
"When my parents wanted me to start pre-school I didn’t want to go," says Holly, age 20. "From pre-school through most of first grade I felt so nervous before going to school. I couldn’t eat breakfast. I felt physically sick."
Holly is like many children who suffer from school phobia, or school refusal, which affects one percent of school aged children. School phobia relates to the larger problems of separation anxiety and social phobias which involve extreme, incapacitating discomfort in social situations.
"My parents made me go to school," continues Holly. "But I didn’t do the work. I wouldn’t even talk. Eventually my mom took me to the doctor. He said I was extremely shy. He told us I would grow out of it."
Holly’s experience typifies the most recent findings on shyness. Increasingly, research suggests that infants can inherit shyness just as they might inherit blue eyes or red hair. In fact, from more than two decades of research, Harvard child psychologist Jerome Kagan found that 15 percent of infants moved their arms and legs and cried when shown a new person. Kagan’s "inhibited babies" are now teens and many are extremely shy and anxious about socializing.
To get really technical, brain wave studies show that for very shy kids, excess right-brain activity develops in the amygdala, a part of the brain involved in fear and anxiety. If a shy child’s amygdala is easily overwhelmed, the child might make up for it by avoiding stressful social situations.
"It was so painful for me to speak in class," says Holly. "My participation was so bad that my teachers didn’t know if I had learned anything and they planned to fail me. Years later my mother shared why I passed the class. Without my knowing, she tape recorded me saying my ABC’s and counting at home and then played the tapes for my teachers. They knew I had learned so they passed me."
Other factors like language point to the complexity associated with shyness. Holly’s bilingual in Polish and English. She frequently spoke Polish at home with her grandmother, but English was the only language spoken at school. Although Holly continued to be afraid of speaking in school, she had no problem conversing at home in either Polish or English. Selective mutism is an inability to speak in social situations where one is expected to speak, while being able to speak in others. Perhaps Holly’s social phobia was due to a combination of anxiety, shyness, and choice of language spoken in the diverse worlds of school and home.
Holly is now a college student. While her shyness has improved, it continues to be her primary academic difficulty. "I can participate, but not without going through intense feelings of nervousness and anxiety."
Unlike her pediatrician’s prediction, Holly did not "grow out" of her shyness. While she is a successful college student, her experience raises the question of what we can do for children who suffer from this possibly overwhelming syndrome.
Michael, now 14, was a sociable child until about age 10, when he started a new school. "I never said a word the first day of class," says Michael. "And I stopped participating. I thought if I didn’t act interested in my classes, the cool, older kids wouldn’t pick on me."
"Suddenly my son was off in a little world by himself," says Claudia, Michael’s mother. "His grades began to drop. He wouldn’t talk in class. He just wasn’t interested in school. And he wouldn’t talk about it. Finally I told him if he didn’t tell me what was going on, I couldn’t help. That’s when he said he was getting pushed around by other kids."
While only 15 percent of people are born with the tendency to be shy, 50 percent say they feel shy, indicating that environment also shapes the shy child. Certainly Michael’s experience attests to this fact. "The kids pushed and assaulted me," he says quietly, lowering his eyes. "I was afraid to tell the teachers, because then the kids would hurt me even more."
Dr. Philip Zimbardo, renown psychologist at Stanford University, speaks about shyness: "Shyness may range from the common awkwardness felt entering a new social situation to the incapacitating phobia of people and inhibition to interact with others. Some shyness is inherited, but most of it is learned from negative transactions with others or imagined social failures and rejection. Shyness seems to be on the increase in countries such as the United States, perhaps due to reliance on electronic technology that is making people socially passive and substituting Virtual Reality for Face to Face Reality."
While there are no easy answers, there are options. Jerome Kagan says that often, inhibited babies become less so over time. Changing environments that promote shyness and anxiety is another strategy. Soon after Michael’s disclosure, his mother switched schools. "My Michael came back," she said. "He became more sociable and his grades gradually increased. The change was positive. He had more friends and it was a safer environment." Getting kids back to school has been shown to be the most important factor in combating school phobia.
Now in high school, Michael feels relieved. He’s talking in class, showing his knowledge, and knows there are good kids around. His message to New York City kids is, "Don’t make the negative bigger than it is, look for the positive."
His mother follows: "Talk to your kids. I think it is so important to communicate with your child and have your child communicate with you. Parenting is the starting point to the social aspect of your child’s life. Ask why your child is shy. Ask why your child can’t make friends."
"When my parents wanted me to start pre-school I didn’t want to go," says Holly, age 20. "From pre-school through most of first grade I felt so nervous before going to school. I couldn’t eat breakfast. I felt physically sick."
Holly is like many children who suffer from school phobia, or school refusal, which affects one percent of school aged children. School phobia relates to the larger problems of separation anxiety and social phobias which involve extreme, incapacitating discomfort in social situations.
"My parents made me go to school," continues Holly. "But I didn’t do the work. I wouldn’t even talk. Eventually my mom took me to the doctor. He said I was extremely shy. He told us I would grow out of it."
Holly’s experience typifies the most recent findings on shyness. Increasingly, research suggests that infants can inherit shyness just as they might inherit blue eyes or red hair. In fact, from more than two decades of research, Harvard child psychologist Jerome Kagan found that 15 percent of infants moved their arms and legs and cried when shown a new person. Kagan’s "inhibited babies" are now teens and many are extremely shy and anxious about socializing.
To get really technical, brain wave studies show that for very shy kids, excess right-brain activity develops in the amygdala, a part of the brain involved in fear and anxiety. If a shy child’s amygdala is easily overwhelmed, the child might make up for it by avoiding stressful social situations.
"It was so painful for me to speak in class," says Holly. "My participation was so bad that my teachers didn’t know if I had learned anything and they planned to fail me. Years later my mother shared why I passed the class. Without my knowing, she tape recorded me saying my ABC’s and counting at home and then played the tapes for my teachers. They knew I had learned so they passed me."
Other factors like language point to the complexity associated with shyness. Holly’s bilingual in Polish and English. She frequently spoke Polish at home with her grandmother, but English was the only language spoken at school. Although Holly continued to be afraid of speaking in school, she had no problem conversing at home in either Polish or English. Selective mutism is an inability to speak in social situations where one is expected to speak, while being able to speak in others. Perhaps Holly’s social phobia was due to a combination of anxiety, shyness, and choice of language spoken in the diverse worlds of school and home.
Holly is now a college student. While her shyness has improved, it continues to be her primary academic difficulty. "I can participate, but not without going through intense feelings of nervousness and anxiety."
Unlike her pediatrician’s prediction, Holly did not "grow out" of her shyness. While she is a successful college student, her experience raises the question of what we can do for children who suffer from this possibly overwhelming syndrome.
Michael, now 14, was a sociable child until about age 10, when he started a new school. "I never said a word the first day of class," says Michael. "And I stopped participating. I thought if I didn’t act interested in my classes, the cool, older kids wouldn’t pick on me."
"Suddenly my son was off in a little world by himself," says Claudia, Michael’s mother. "His grades began to drop. He wouldn’t talk in class. He just wasn’t interested in school. And he wouldn’t talk about it. Finally I told him if he didn’t tell me what was going on, I couldn’t help. That’s when he said he was getting pushed around by other kids."
While only 15 percent of people are born with the tendency to be shy, 50 percent say they feel shy, indicating that environment also shapes the shy child. Certainly Michael’s experience attests to this fact. "The kids pushed and assaulted me," he says quietly, lowering his eyes. "I was afraid to tell the teachers, because then the kids would hurt me even more."
Dr. Philip Zimbardo, renown psychologist at Stanford University, speaks about shyness: "Shyness may range from the common awkwardness felt entering a new social situation to the incapacitating phobia of people and inhibition to interact with others. Some shyness is inherited, but most of it is learned from negative transactions with others or imagined social failures and rejection. Shyness seems to be on the increase in countries such as the United States, perhaps due to reliance on electronic technology that is making people socially passive and substituting Virtual Reality for Face to Face Reality."
While there are no easy answers, there are options. Jerome Kagan says that often, inhibited babies become less so over time. Changing environments that promote shyness and anxiety is another strategy. Soon after Michael’s disclosure, his mother switched schools. "My Michael came back," she said. "He became more sociable and his grades gradually increased. The change was positive. He had more friends and it was a safer environment." Getting kids back to school has been shown to be the most important factor in combating school phobia.
Now in high school, Michael feels relieved. He’s talking in class, showing his knowledge, and knows there are good kids around. His message to New York City kids is, "Don’t make the negative bigger than it is, look for the positive."
His mother follows: "Talk to your kids. I think it is so important to communicate with your child and have your child communicate with you. Parenting is the starting point to the social aspect of your child’s life. Ask why your child is shy. Ask why your child can’t make friends."
Saturday, September 10, 2011
Family Members & Consumers: Uniting Coalescing Constituencies
NAMI is now in its 21st year, so you could say we have come of age. In its first two decades NAMI has grown and matured as an organization. We now have over 220,000 members in all 50 states, Puerto Rico, Canada and several other nations. And I'm proud to say that we have seen a tremendous increase in the number of consumers who have joined and participate in NAMI. Our board of directors, all elected by grassroots members, now includes four consumers-1/4 of the total. Two consumers are members of the executive committee; Fred Frese is 1st vice-president and Jim McNulty is treasurer. Moe Armstrong and Mike Freeman joined the Board last year. As has always been the case, the rest of the 16-member Board is made of spouses, siblings and parents of persons with serious mental illness. There are no appointed seats on the Board. Over half of the NAMI staff are consumers or family members. The essential character of our movement remains one of fierce independence and passionate advocacy.
Yet I know that some in the consumer-survivor world disdain NAMI and claim we are not working in the best interests of persons with mental illnesses. I find these charges strange and troubling. Strange because I think any fair analysis will show that no organization has done more to advance the rights and dignity of people with mental illness than NAMI. In medical research and health policy, in housing and employment, in the media, the Congress and state legislatures, NAMI has been strong and successful. Our message is one of hope and recovery.
Like many NAMI members, I have seen the reality of recovery in my family. My daughter Shannon has graduated from college and graduate school. She lives in her own apartment and works full time in her field. She has the support of family and friends and she shares her recovery as a support group leader each week. She is a public advocate and outspoken in the fight against stigma and discrimination. I am very proud of Shannon and her achievements despite her schizoaffective disorder. I am troubled that her success story is still far too rare. And I am dedicated to helping make recoveries like Shannon's the usual and expected outcome for people with mental illness. We have a long way to go.
How can we make recovery possible for individuals with schizophrenia, bi-polar disorder and other severe mental illnesses? I think there are some clear answers to this question and a path forward. I have been delighted to discuss these issues and challenges with Ken Steele. We have found a lot of common ground, which makes me optimistic for the future. One of the items that seem important is to acknowledge that some of the loudest voices in the "consumer-survivor ex-patient" movement have a very different agenda than NAMI. We are focused on promoting recovery and we recognize that severe mental illnesses are real, medical and treatable. We believe doctors, medicine and ongoing access to treatment and services are critical to functioning well for most individuals with serious mental illness. NAMI programs recognize the importance of consumer self-help as a vital support to recovery. That's why we have trained consumers to share their knowledge and experience as leaders of our Living with Schizophrenia classes. We want to link people who have learned how to cope successfully with mental illness. It's why we have mounted a national Campaign to End Discrimination, challenging stigma. Our Campaign has worked to pass insurance parity legislation in 28 states. We insist on the truth of our key messages-"mental illnesses are brain disorders," "treatment works" and "discrimination is wrong." We aim to move mental illness issues into the mainstream of healthcare practice and policy. The recent historic Surgeon General's Report on Mental Health is one sign of success. Certainly more and more Americans are coming to understand our concerns and support our advocacy agenda.
In Washington we know that issues only get legs when they have a visible and vocal constituency. That's where the collaboration between NAMI and Ken Steele's Voter Empowerment Project got started. Through his New York City experience, Ken has discovered how well politicians can listen when they realize that you vote! With over 30,000 consumers registered and voting in New York, Ken gets a response when he calls his elected officials. We at NAMI know the importance of grassroots activism. That's the heart and soul of NAMI 's effectiveness. So naturally I was eager to work with Ken to help spread the voter empowerment project across the nation. As you know, the National Mental Health Association (NMHA) has also embraced the program and begun a series of training sessions.
At NAMI we like to work in the local communities and we like to be hands on. In a highly charged presidential election year we believe it is important to get focused attention from the candidates and the media. So NAMI started our program with an all out effort in New Hampshire. Mike Fitzpatrick is our regional director for New England. He is also a former executive director of NAMI-Maine and a former member of the Maine Legislature, Mike is a savvy politician and he knows how to do grassroots organizing. In New Hampshire we also have a former NAMI president, Rona Purdy. Rona is a dedicated advocate and chairs our Campaign to End Discrimination. She is a former on-air reporter for ABC TV and truly understands the "art of spinning."
This talented team hit the ground and worked closely with mental health center staff and consumer leaders. Registration drives were in a number of locations across the state. Educational sessions were offered to consumers and NAMI members were recruited to help drive new consumer voters to the polls. The national media attention on the famous New Hampshire Presidential Primary helped us get into editorial boards, on regional television news programs and into meetings with the candidates themselves. We ran radio and newspaper ads and queried the candidates on their positions and priorities. All of this activity increased our visibility. In the eyes of New Hampshire, we are a constituency!
Ken will be speaking at our February Legislative Conference, which will educate all NAMI state presidents and executive directors and consumer council leaders about the Voter Empowerment Project. In many states and communities we expect to work with Mental Health Associations (MHA). In every location we will partner with local consumers to get the message out. It's NAMI's slogan for this election year: "I Vote I Count."
Rather than focus on the few areas of difference, Ken and the Voter Empowerment Project give consumers and families, NAMI and NMHA, and you and me a place to work together. And working together, we truly can change the world.
Yet I know that some in the consumer-survivor world disdain NAMI and claim we are not working in the best interests of persons with mental illnesses. I find these charges strange and troubling. Strange because I think any fair analysis will show that no organization has done more to advance the rights and dignity of people with mental illness than NAMI. In medical research and health policy, in housing and employment, in the media, the Congress and state legislatures, NAMI has been strong and successful. Our message is one of hope and recovery.
Like many NAMI members, I have seen the reality of recovery in my family. My daughter Shannon has graduated from college and graduate school. She lives in her own apartment and works full time in her field. She has the support of family and friends and she shares her recovery as a support group leader each week. She is a public advocate and outspoken in the fight against stigma and discrimination. I am very proud of Shannon and her achievements despite her schizoaffective disorder. I am troubled that her success story is still far too rare. And I am dedicated to helping make recoveries like Shannon's the usual and expected outcome for people with mental illness. We have a long way to go.
How can we make recovery possible for individuals with schizophrenia, bi-polar disorder and other severe mental illnesses? I think there are some clear answers to this question and a path forward. I have been delighted to discuss these issues and challenges with Ken Steele. We have found a lot of common ground, which makes me optimistic for the future. One of the items that seem important is to acknowledge that some of the loudest voices in the "consumer-survivor ex-patient" movement have a very different agenda than NAMI. We are focused on promoting recovery and we recognize that severe mental illnesses are real, medical and treatable. We believe doctors, medicine and ongoing access to treatment and services are critical to functioning well for most individuals with serious mental illness. NAMI programs recognize the importance of consumer self-help as a vital support to recovery. That's why we have trained consumers to share their knowledge and experience as leaders of our Living with Schizophrenia classes. We want to link people who have learned how to cope successfully with mental illness. It's why we have mounted a national Campaign to End Discrimination, challenging stigma. Our Campaign has worked to pass insurance parity legislation in 28 states. We insist on the truth of our key messages-"mental illnesses are brain disorders," "treatment works" and "discrimination is wrong." We aim to move mental illness issues into the mainstream of healthcare practice and policy. The recent historic Surgeon General's Report on Mental Health is one sign of success. Certainly more and more Americans are coming to understand our concerns and support our advocacy agenda.
In Washington we know that issues only get legs when they have a visible and vocal constituency. That's where the collaboration between NAMI and Ken Steele's Voter Empowerment Project got started. Through his New York City experience, Ken has discovered how well politicians can listen when they realize that you vote! With over 30,000 consumers registered and voting in New York, Ken gets a response when he calls his elected officials. We at NAMI know the importance of grassroots activism. That's the heart and soul of NAMI 's effectiveness. So naturally I was eager to work with Ken to help spread the voter empowerment project across the nation. As you know, the National Mental Health Association (NMHA) has also embraced the program and begun a series of training sessions.
At NAMI we like to work in the local communities and we like to be hands on. In a highly charged presidential election year we believe it is important to get focused attention from the candidates and the media. So NAMI started our program with an all out effort in New Hampshire. Mike Fitzpatrick is our regional director for New England. He is also a former executive director of NAMI-Maine and a former member of the Maine Legislature, Mike is a savvy politician and he knows how to do grassroots organizing. In New Hampshire we also have a former NAMI president, Rona Purdy. Rona is a dedicated advocate and chairs our Campaign to End Discrimination. She is a former on-air reporter for ABC TV and truly understands the "art of spinning."
This talented team hit the ground and worked closely with mental health center staff and consumer leaders. Registration drives were in a number of locations across the state. Educational sessions were offered to consumers and NAMI members were recruited to help drive new consumer voters to the polls. The national media attention on the famous New Hampshire Presidential Primary helped us get into editorial boards, on regional television news programs and into meetings with the candidates themselves. We ran radio and newspaper ads and queried the candidates on their positions and priorities. All of this activity increased our visibility. In the eyes of New Hampshire, we are a constituency!
Ken will be speaking at our February Legislative Conference, which will educate all NAMI state presidents and executive directors and consumer council leaders about the Voter Empowerment Project. In many states and communities we expect to work with Mental Health Associations (MHA). In every location we will partner with local consumers to get the message out. It's NAMI's slogan for this election year: "I Vote I Count."
Rather than focus on the few areas of difference, Ken and the Voter Empowerment Project give consumers and families, NAMI and NMHA, and you and me a place to work together. And working together, we truly can change the world.
Wednesday, August 10, 2011
Express to Paradise: A Mother's Story
Dedicated to the memory of my daughter Lisa O’Loughlin, who was known as "Freedom" to her family and friends. She took her own life on October 26, 1987.
"What a waste! She was only nineteen, beautiful and intelligent!" A young man exclaimed these words at my daughter Lisa’s wake eleven years ago. I’ll never forget his remark.
She was diagnosed manic-depressive and schizophrenic at the tender teen age of sixteen. One day in 1984, clad in only a white sheet, she claimed to be "the second coming of Christ" to her brother Chris. Alarmed, he quickly told me - so we took her across the street to North Central Bronx Hospital Emergency (Psych) Room.
Lisa’s diagnosis occurred several admissions later in a Long Island hospital. She went to six hospitals at least (Beth Israel, Bronx State Psychiatric Center, Westchester County Medical Center) and ultimately to Harlem Valley State Psychiatric Center in Wingdale, N.Y. My daughter was transferred there because I had just remarried and I wanted her to be geographically closer to me and my husband; we lived in Bedford Hills.
Besides Lisa, my youngest, I have two sons, ages 33 and 39. They are both on speaking terms with their father since our divorce. Alcoholism was on his side of the family and mental illness on my mother’s side!
Lisa, it was revealed later in our family group therapy sessions at Bronx State, took various harmful street drugs with her girlfriend and boyfriend and found out they did trigger off her condition. I noticed some drastic changes in her bubbly personality after age fifteen. Lisa had done modeling for a year and had a blast doing it! I, thank God, I have many photographs and slides from her fabulous escapade!
Drugs! Lisa, in the end, wanted to be "drug-free" we surmised. In order to function somewhat "normal-like" she had to take and stay on her prescribed psychotropic drugs that were given to her at the hospital.
Eleven years ago drugs like Risperdal (risperidone), Zyprexa (olanzipine) and other new atypical antipsychotic drugs were non-existent. She had significant side effects for which she was given Cogentin, but her sick mind let her act strangely "different." At this point, her doctor, social worker and family advocate were to meet with her dad and me to evaluate Lisa and her medication!
Each day the patients would be bussed to a nearby town to a site like PsychSystems for group therapy, etc. That particular day, October 26, 1987, Lisa was to remain behind at the hospital for the evaluation meeting. She, however, went on the bus without any "worker" stopping her as per ordered. She went down to the town of Mount Kisco, left there, then boarded the "Metro Line" to White Plains, N.Y., where she visited an ex-patient friend.
Keep in mind now, my daughter had had no psychiatric medications for several weeks. She must have thrown them down the toilet when no one was looking. Lisa was hearing voices and hallucinating through all this. When she had left her friend, she went back to the White Plains station, where witnesses said she was "screaming, swerving and veering" on the platform. When an express train going north came through the station, Lisa vaulted in front of it, to her death! Those dreaded voices urged her to leave this earth and her miserable existence!
Had she stayed on the drugs given her for eight more years, in a guarded setting, whether it was at home, in the hospital or at a half-way house, Lisa would have been around to take one of the wonderful new atypical drugs for schizophrenia!
You must stay on these drugs, always, whether you feel good, bad or indifferent. I can’t stress this enough. To stop taking these drugs for any "good" reason is a bad move. We have come such a long way since my daughter’s suicide, eleven years ago. She would be here today if such a drug existed then. Lisa would be a productive human being like so many other individuals with schizophrenia who are reaching out and helping others like her.
Suicide can be prevented. We now have the resources and wonderful support groups and people to help every step of the way. Lisa’s death was not in vain and was not a "waste." If good can come out of it—helping others with mental illness—we can all learn form this horrible experience!
"What a waste! She was only nineteen, beautiful and intelligent!" A young man exclaimed these words at my daughter Lisa’s wake eleven years ago. I’ll never forget his remark.
She was diagnosed manic-depressive and schizophrenic at the tender teen age of sixteen. One day in 1984, clad in only a white sheet, she claimed to be "the second coming of Christ" to her brother Chris. Alarmed, he quickly told me - so we took her across the street to North Central Bronx Hospital Emergency (Psych) Room.
Lisa’s diagnosis occurred several admissions later in a Long Island hospital. She went to six hospitals at least (Beth Israel, Bronx State Psychiatric Center, Westchester County Medical Center) and ultimately to Harlem Valley State Psychiatric Center in Wingdale, N.Y. My daughter was transferred there because I had just remarried and I wanted her to be geographically closer to me and my husband; we lived in Bedford Hills.
Besides Lisa, my youngest, I have two sons, ages 33 and 39. They are both on speaking terms with their father since our divorce. Alcoholism was on his side of the family and mental illness on my mother’s side!
Lisa, it was revealed later in our family group therapy sessions at Bronx State, took various harmful street drugs with her girlfriend and boyfriend and found out they did trigger off her condition. I noticed some drastic changes in her bubbly personality after age fifteen. Lisa had done modeling for a year and had a blast doing it! I, thank God, I have many photographs and slides from her fabulous escapade!
Drugs! Lisa, in the end, wanted to be "drug-free" we surmised. In order to function somewhat "normal-like" she had to take and stay on her prescribed psychotropic drugs that were given to her at the hospital.
Eleven years ago drugs like Risperdal (risperidone), Zyprexa (olanzipine) and other new atypical antipsychotic drugs were non-existent. She had significant side effects for which she was given Cogentin, but her sick mind let her act strangely "different." At this point, her doctor, social worker and family advocate were to meet with her dad and me to evaluate Lisa and her medication!
Each day the patients would be bussed to a nearby town to a site like PsychSystems for group therapy, etc. That particular day, October 26, 1987, Lisa was to remain behind at the hospital for the evaluation meeting. She, however, went on the bus without any "worker" stopping her as per ordered. She went down to the town of Mount Kisco, left there, then boarded the "Metro Line" to White Plains, N.Y., where she visited an ex-patient friend.
Keep in mind now, my daughter had had no psychiatric medications for several weeks. She must have thrown them down the toilet when no one was looking. Lisa was hearing voices and hallucinating through all this. When she had left her friend, she went back to the White Plains station, where witnesses said she was "screaming, swerving and veering" on the platform. When an express train going north came through the station, Lisa vaulted in front of it, to her death! Those dreaded voices urged her to leave this earth and her miserable existence!
Had she stayed on the drugs given her for eight more years, in a guarded setting, whether it was at home, in the hospital or at a half-way house, Lisa would have been around to take one of the wonderful new atypical drugs for schizophrenia!
You must stay on these drugs, always, whether you feel good, bad or indifferent. I can’t stress this enough. To stop taking these drugs for any "good" reason is a bad move. We have come such a long way since my daughter’s suicide, eleven years ago. She would be here today if such a drug existed then. Lisa would be a productive human being like so many other individuals with schizophrenia who are reaching out and helping others like her.
Suicide can be prevented. We now have the resources and wonderful support groups and people to help every step of the way. Lisa’s death was not in vain and was not a "waste." If good can come out of it—helping others with mental illness—we can all learn form this horrible experience!
Wednesday, July 13, 2011
Tribute
She thinks of me more than I do myself. She gives and gives. I wonder why, then I think, because she's my mother.
Were you ever zonked out of your mind? Have you ever been so out of it that you're a danger to yourself and others? I get that way without the medication. The day came, again, for me to be hospitalized and I fought it tooth and nail. I was in the Emergency Room of Long Island Jewish Medical Center. I should know the routine by now, but the thoughts don't let you accept it. Mommy, Daddy and I were there again, but this time I wasn't sitting still. Too much energy? Too much balls? Maybe just too afraid. I bolted out of the Emergency Room. No guards could hold me. Even when my father grabbed me, I shook him off the way a horse shakes off flies. I was out of there.
But you know, even though it was six or so in the morning, and even though I'm an adult, Mommy was following behind me. You wouldn't believe the energy in this sixty-five year old woman. It made me think of the days she took us camping: How she hiked the Appalachian Trail with us. Now in Glen Oaks, she hiked through suburbia to catch up to me. Out of my head I marched on. I didn't have a destination, just a desire to be somewhere else.
She caught up to me on Union Turnpike, way down by Creedmoor Hospital. She didn't swear at me, laugh at me or even ask what I was doing. I remember what she said: "I love you!"
My mother went into the hospital. She went there a few times before, but I wondered how serious this was. Paul, my brother, relayed the information to me over the phone. "They ran a CAT Scan, hundreds of other tests. We should be home in an hour or so if everything checks out."
But everything didn't check out or so it seemed. They kept her overnight. I wondered whether she might not come back. Is that concern or paranoia? But she's seventy five now. Is she still strong enough to tame those mountain peaks? I don't know. I thought back to that summer when my folks partied at their Fiftieth Wedding Anniversary. Really it was a forty nine and a half celebration. Since they got married in the winter, folks might not come out in the cold weather. Then I wondered whether she'd be here for the real date.
I had to return to "the scene of the crime": Long Island Jewish Medical Center. I wasn't a patient this time. I was a visitor. Hospitals give me a strange feeling. Sick people look terrible. Probably the pain distorts their faces. But I was glad to see Mommy. I didn't judge or ask embarrassing questions. She didn't do that to me. You know just what I said.
Were you ever zonked out of your mind? Have you ever been so out of it that you're a danger to yourself and others? I get that way without the medication. The day came, again, for me to be hospitalized and I fought it tooth and nail. I was in the Emergency Room of Long Island Jewish Medical Center. I should know the routine by now, but the thoughts don't let you accept it. Mommy, Daddy and I were there again, but this time I wasn't sitting still. Too much energy? Too much balls? Maybe just too afraid. I bolted out of the Emergency Room. No guards could hold me. Even when my father grabbed me, I shook him off the way a horse shakes off flies. I was out of there.
But you know, even though it was six or so in the morning, and even though I'm an adult, Mommy was following behind me. You wouldn't believe the energy in this sixty-five year old woman. It made me think of the days she took us camping: How she hiked the Appalachian Trail with us. Now in Glen Oaks, she hiked through suburbia to catch up to me. Out of my head I marched on. I didn't have a destination, just a desire to be somewhere else.
She caught up to me on Union Turnpike, way down by Creedmoor Hospital. She didn't swear at me, laugh at me or even ask what I was doing. I remember what she said: "I love you!"
My mother went into the hospital. She went there a few times before, but I wondered how serious this was. Paul, my brother, relayed the information to me over the phone. "They ran a CAT Scan, hundreds of other tests. We should be home in an hour or so if everything checks out."
But everything didn't check out or so it seemed. They kept her overnight. I wondered whether she might not come back. Is that concern or paranoia? But she's seventy five now. Is she still strong enough to tame those mountain peaks? I don't know. I thought back to that summer when my folks partied at their Fiftieth Wedding Anniversary. Really it was a forty nine and a half celebration. Since they got married in the winter, folks might not come out in the cold weather. Then I wondered whether she'd be here for the real date.
I had to return to "the scene of the crime": Long Island Jewish Medical Center. I wasn't a patient this time. I was a visitor. Hospitals give me a strange feeling. Sick people look terrible. Probably the pain distorts their faces. But I was glad to see Mommy. I didn't judge or ask embarrassing questions. She didn't do that to me. You know just what I said.
Sunday, July 10, 2011
A Father's Story
My first recollection of Daniel being ill was when I noticed him always looking down while walking; stopping for no reason and staring into space as though he was listening to someone who was NOT THERE.
When I asked him why he was doing these things he would say that it was not polite to stare at people. About stopping and listening: "It was just what I do," as if it was natural for him. He believed that he was special having these experiences. Later on he told me the voices told him he was "the man!"
As a parent, I always perceived Daniel as a bright boy who had emotional problems caused by my divorce from his mother. I felt tremendous guilt even though I had visitation rights every weekend.
As a child Daniel never showed any emotion. Again, I though it was because he was missing "me" in his life because of the physical separation. My ex-wife took Daniel to a few child psychologists, but to no avail. It did not last and I received very little feedback. When Daniel turned 16 he asked to live with me, I had no problem with that. He was going to one of the best high schools in New York City and was excelling. After a while I noticed he was getting depressed. He would come home and not say a word to me. If I asked him a question, he would reply "It's none of your business!" He'd ignore me as if I didn't exist. I wrote it off as teenager rebelling while going through puberty. He graduated from the Bronx High School of Science; I was very proud of him. Daniel went on to college. Everything was going well. In his junior year he told me things that started me thinking something was wrong. He used to keep the windows in his room wide open during the winter months. He told me that there were people or things out there that were "out to get me." One evening when I came home from work I found Daniel and some friends in the house. I don't remember what I said to him, but when I merely placed my hands on the back of his head (he was sitting on a chair) he got up quickly and threw me to the floor! Then he got on top of me and said "the force is with me" and he "had the power" as in Star Wars. I was then still in total denial that anything serious was going on. After that I watched him more closely. As time went on I noticed he had somewhat of a split personality. His college studies were now not going well; he didn't graduate on schedule.
One day in July we went out to Brighton Beach. I noticed he was acting strangely. I asked Daniel when we got home if he would go with me to Montefiore Medical Center Psychiatric Emergency Room for a checkup; he said he would. I was under the impression that he would see a psychiatrist and arrangements would be made for outpatient appointments. To my surprise, they took Daniel to an isolation room. I was shocked, he was not a criminal! At that point I felt horrible that I brought him to the hospital. The doctor told me he had signs of schizophrenia and they would hold him for observation. I could only imagine the surprise and shock Daniel was experiencing! I tried to remain with him as long as I could. I did not want Daniel to think I was abandoning him. I still couldn't believe what the doctor told me. They gave Daniel Haldol to calm him and after two days took him upstairs to the psychiatric ward. There they gave Daniel 3 mg of Risperdal and subsequently his psychotic episodes disappeared! Daniel was in total denial, but he listened to the doctors and took the Risperdal. He stayed at Montefiore Medical Center for two weeks and then was released and was sent to Psych-Systems of Manhattan as an outpatient. They gave him 3 mg of Risperdal to take at home while continuing his outpatient care. He told me he was feeling "sluggish" while taking Risperdal. The "voices" had disappeared; he looked fine and he no longer looked down while he walked.
The idea of having a "mental illness" didn't sit well with Daniel or me. He felt better but was still in total denial as was I. He stopped taking his medication as soon as he got home, thus his symptoms returned! I didn't say anything as I knew he wouldn't want to go back to the hospital. I always walked Daniel to meet the van that took him to Psych Systems of Manhattan. I knew upon seeing Daniel in the condition he was in, they would send him to the hospital again. That same day, Psych Systems did call me stating that they had to take Daniel to New York Hospital due to psychotic behavior! I then went down to New York Hospital and saw my son in an isolation room again. He refused any medication. At that point I signed papers and arranged for Daniel to be taken back to Montefiore Medical Center. When he got back to Montefiore, he was quite delusional and still refused medication. He had the idea that everyone was trying to poison him. He refused to eat anything. He looked at me like I was his enemy. For about a week they placed him in isolation.
One Saturday (August 1, to be exact) my friend Pam was watching TV and happened to watch "Four Stories" on channel 4. The first story was about Ken Steele. Pam called me and told me to tune in for the subject matter was schizophrenia. I did and got Ken's telephone number. It was like a miracle sent just in time for me! Ken was nice enough to call Daniel at Montefiore Medical Center. After awhile Daniel started to take Risperdal in a smaller dosage. He was released again and started with Psych Systems of Westchester while helping Ken Steele with his work and also his newspaper, New York City Voices. He is now a "consumer" working for mental health.
Daniel now sees his future in helping other people with schizophrenia and other mental health problems and the importance of taking Risperdal.
I have come a long way from being in denial about my son's illness. I now understand more about it from the knowledge attained from Ken Steele and his life's work. It's difficult to believe that in just four short months since Daniel's first admission and possible schizophrenic diagnosis, positive change has occurred in my life and his, due to "Four Stories," Ken Steele, Risperdal and New York City Voices.
My son is also helping Adrienne Williams and attending informative seminars. Daniel also now goes to the Park Slope Center for Mental Health for therapy. He currently does things he could never do before and is not depressed as he was before, feels comfortable with his peers (doesn't feel like a freak) smiles, writes about his feelings, verbalizes them and most of all has a pretty clear idea how he would like to spend his future: incorporating scholastic (English major) and practical experience to help others. Isn't that where it's at?!
As Daniel's dad I am grateful and have in this short time grown to accept his illness.
We must all, however, take it "one day at a time."
When I asked him why he was doing these things he would say that it was not polite to stare at people. About stopping and listening: "It was just what I do," as if it was natural for him. He believed that he was special having these experiences. Later on he told me the voices told him he was "the man!"
As a parent, I always perceived Daniel as a bright boy who had emotional problems caused by my divorce from his mother. I felt tremendous guilt even though I had visitation rights every weekend.
As a child Daniel never showed any emotion. Again, I though it was because he was missing "me" in his life because of the physical separation. My ex-wife took Daniel to a few child psychologists, but to no avail. It did not last and I received very little feedback. When Daniel turned 16 he asked to live with me, I had no problem with that. He was going to one of the best high schools in New York City and was excelling. After a while I noticed he was getting depressed. He would come home and not say a word to me. If I asked him a question, he would reply "It's none of your business!" He'd ignore me as if I didn't exist. I wrote it off as teenager rebelling while going through puberty. He graduated from the Bronx High School of Science; I was very proud of him. Daniel went on to college. Everything was going well. In his junior year he told me things that started me thinking something was wrong. He used to keep the windows in his room wide open during the winter months. He told me that there were people or things out there that were "out to get me." One evening when I came home from work I found Daniel and some friends in the house. I don't remember what I said to him, but when I merely placed my hands on the back of his head (he was sitting on a chair) he got up quickly and threw me to the floor! Then he got on top of me and said "the force is with me" and he "had the power" as in Star Wars. I was then still in total denial that anything serious was going on. After that I watched him more closely. As time went on I noticed he had somewhat of a split personality. His college studies were now not going well; he didn't graduate on schedule.
One day in July we went out to Brighton Beach. I noticed he was acting strangely. I asked Daniel when we got home if he would go with me to Montefiore Medical Center Psychiatric Emergency Room for a checkup; he said he would. I was under the impression that he would see a psychiatrist and arrangements would be made for outpatient appointments. To my surprise, they took Daniel to an isolation room. I was shocked, he was not a criminal! At that point I felt horrible that I brought him to the hospital. The doctor told me he had signs of schizophrenia and they would hold him for observation. I could only imagine the surprise and shock Daniel was experiencing! I tried to remain with him as long as I could. I did not want Daniel to think I was abandoning him. I still couldn't believe what the doctor told me. They gave Daniel Haldol to calm him and after two days took him upstairs to the psychiatric ward. There they gave Daniel 3 mg of Risperdal and subsequently his psychotic episodes disappeared! Daniel was in total denial, but he listened to the doctors and took the Risperdal. He stayed at Montefiore Medical Center for two weeks and then was released and was sent to Psych-Systems of Manhattan as an outpatient. They gave him 3 mg of Risperdal to take at home while continuing his outpatient care. He told me he was feeling "sluggish" while taking Risperdal. The "voices" had disappeared; he looked fine and he no longer looked down while he walked.
The idea of having a "mental illness" didn't sit well with Daniel or me. He felt better but was still in total denial as was I. He stopped taking his medication as soon as he got home, thus his symptoms returned! I didn't say anything as I knew he wouldn't want to go back to the hospital. I always walked Daniel to meet the van that took him to Psych Systems of Manhattan. I knew upon seeing Daniel in the condition he was in, they would send him to the hospital again. That same day, Psych Systems did call me stating that they had to take Daniel to New York Hospital due to psychotic behavior! I then went down to New York Hospital and saw my son in an isolation room again. He refused any medication. At that point I signed papers and arranged for Daniel to be taken back to Montefiore Medical Center. When he got back to Montefiore, he was quite delusional and still refused medication. He had the idea that everyone was trying to poison him. He refused to eat anything. He looked at me like I was his enemy. For about a week they placed him in isolation.
One Saturday (August 1, to be exact) my friend Pam was watching TV and happened to watch "Four Stories" on channel 4. The first story was about Ken Steele. Pam called me and told me to tune in for the subject matter was schizophrenia. I did and got Ken's telephone number. It was like a miracle sent just in time for me! Ken was nice enough to call Daniel at Montefiore Medical Center. After awhile Daniel started to take Risperdal in a smaller dosage. He was released again and started with Psych Systems of Westchester while helping Ken Steele with his work and also his newspaper, New York City Voices. He is now a "consumer" working for mental health.
Daniel now sees his future in helping other people with schizophrenia and other mental health problems and the importance of taking Risperdal.
I have come a long way from being in denial about my son's illness. I now understand more about it from the knowledge attained from Ken Steele and his life's work. It's difficult to believe that in just four short months since Daniel's first admission and possible schizophrenic diagnosis, positive change has occurred in my life and his, due to "Four Stories," Ken Steele, Risperdal and New York City Voices.
My son is also helping Adrienne Williams and attending informative seminars. Daniel also now goes to the Park Slope Center for Mental Health for therapy. He currently does things he could never do before and is not depressed as he was before, feels comfortable with his peers (doesn't feel like a freak) smiles, writes about his feelings, verbalizes them and most of all has a pretty clear idea how he would like to spend his future: incorporating scholastic (English major) and practical experience to help others. Isn't that where it's at?!
As Daniel's dad I am grateful and have in this short time grown to accept his illness.
We must all, however, take it "one day at a time."
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