Love Stands Strong
By Brad Peters
Schizophrenia Magazine
A distinguished 20-year career in the United States military. A single mother. Fighting to ensure the optimal level of health care for her family. Jenny Holloway can boast (not that she would) of succeeding at all of these things. Clearly, Holloway is a strong, capable woman. You have to be to succeed in the military or to survive as a single parent. And as anyone who has tackled the medical system knows, victories aren?t won by weak or half-hearted efforts. Holloway has needed to be strong to survive. However, despite her mental fortitude, nothing prepared her for the day she first heard her 13-year-old son, Kole, tell her that
he wanted to kill himself.
?The first time he said he was suicidal, he?d had a really big meltdown earlier that day. He had actually broken all the glass in my house,? she recalls. ?You need to picture your house with the entire floor just covered in glass. I was hiding in the bathroom because I didn?t want to become a victim. He would have?I don?t want to call it a tantrum, because that?s not what it was, but a meltdown and then he would call 911. He would call the police on himself.?
Kole?s ?meltdown? was not due to a teenage temper tantrum, but it was a result of his dual diagnosis of autism and childhood onset schizophrenia. After emergency services arrived at their home, Kole and his mother were taken to the hospital where they waited for an agonizingly long 17 hours until the facility determined how best to treat Kole. It was during this time, while confined to a hospital bed, that Kole, exhausted from his rampage, turned to his mother and said he just didn?t want to live anymore. He didn?t want to go through this again.
Early evidence
Sadly, at this point in their lives, Holloway had endured heartbreak and turmoil many times. The dedicated mother recalls how the first evidence of schizophrenia surfaced in the lives of a small family already struggling with the demands and special requirements of an autistic child. Kole was 8 years old when he first started hearing voices. Providing a dedicated Christian home for her family, when Kole told his mother that he was ?hearing people talking in his head,? Holloway initially assumed that Kole was working through his faith and perhaps his conscience was developing. Holloway soon discovered that was not the case: ?After all, God and the devil don?t battle it out in the heads of little boys.?
For Holloway, it became clear that her son needed additional help when he refused to play his video game. ?He just stopped playing with his PlayStation. He wouldn?t even enter his name into the game anymore. When I asked him why, he said he didn?t want to because then they would find him. Then I asked him, ?Who will find you?? And he answered: ?Those voices in my head.?
?That?s when I knew we had a new problem.?
Alone in the battle
And that new problem led to several others as Holloway began exploring just what a diagnosis of childhood onset schizophrenia coupled with autism meant. Unfortunately, Holloway has had to traverse those unknown waters alone. While she is quick to point out the excellent care and treatment Kole has received for both of his illnesses, for her it has been a different story.
?There really hasn?t been a lot of support for me. For Kole, his workers have been great, but for me, I?ve pretty much had to learn everything on my own. Outside of a dear woman at church, whose son is also autistic?she has been great. But besides that, there hasn?t been a lot of support or teaching for me.?
So for Holloway, that means a great deal of reading and research to stay on top of the latest discoveries and treatments for her son. Through her continual studies and the laboratory of her life?Holloway has discovered the value of two things in particular that are crucial to Kole?s, and therefore her own, well-being.
The first is medication. ?There is no more wonderful drug in the world than clozapine,? she says without an ounce of overstatement in her voice. ?It has totally changed things for Kole. It has given me my son back. When we have to be admitted to hospital (after a ?meltdown?), it is the first thing that I ask the doctors to prescribe. It brings him back.?
Education has also been key for both Holloway and Kole. She now has her son in an ?excellent, Level 5 school? in Baltimore, Maryland. It means getting up early for the long bus ride, as Baltimore is 90 minutes from their home, but the schooling and structure in Kole?s life (who functions at the level of a 5-to 7-year-old, but cannot read) has had a great impact.
But despite the work that she has done with Kole, the future for the family is uncertain. Living with and caring for Kole has not been easy on his older siblings, both of whom have left home. And while Kole?s mental development is curtailed, physically he is a normal, growing teenage boy, who sometimes becomes extremely violent. It is this reality that weighs heavily on his mother?s mind.
?I?m not sure how much longer I can handle Kole,? she says. ?It?s tough being hit regularly. And he?s getting bigger. The last thing I want to do is to consider residential care for him, but I don?t know. It would just break his heart not to be here with me, but I just don?t know??
The research continues
Experts in the mental health field continue to gather information about childhood onset schizophrenia. Are cases like Kole?s increasing? Is childhood onset schizophrenia on the rise?
Not surprisingly, there are as many different answers to these questions as there are schizophrenia patients. However, in its study of childhood onset schizophrenia, the National Institute of Mental Health (NIMH) made some interesting discoveries. Published material from the institute highlights the work being done in the field of genetics to identify schizophrenia spectrum disorders?and other illnesses: ?In addition to studies of brain structural abnormalities, researchers are also examining a group of measures associated with genetic risk for schizophrenia. Early onset cases of illness have recently proven crucial in the discovery of genes linked to other genetically complex disorders like breast cancer, Alzheimer?s and Crohn?s diseases. Hence, children with schizophrenia and their families may play an important role in deciphering schizophrenia?s molecular roots. Evidence suggests that the rate of genetically linked abnormalities is twice as high in children as in adults with the illness. Similarly, schizophrenia spectrum disorders, thought to be genetically related to schizophrenia, are about twice as prevalent among first-degree relatives of childhood-onset patients. In one recent study, a third of the families of individuals with childhood onset schizophrenia had at least one first-degree relative with a diagnosis of schizophrenia, schizotypal, or paranoid personality disorder. This profile of psychiatric illness is remarkably similar to that seen in parents of adult onset patients, adding to the likelihood that both forms share common genetic roots. Other anomalies associated with adult schizophrenia, such as abnormal eye movements, are also more common in families of children with the illness.? (NIMH, 2001)
Perhaps it?s due to her years of dealing with Kole?s situation or it may be due to her military training, but Jenny Holloway describes her son?s condition, and their day-to-day life dealing with schizophrenia and autism, with the same clinical precision as the NIMH findings above. However, the one thing that the institute doesn?t mention?and the one thing that is abundantly evident in Holloway?s approach to her son?s illness?may be the one thing that makes the largest difference of all: A parent?s love.
Brad Peters lives in Niagara Falls, Ontario with his wife and two young children. He is a daily newspaper editor whose freelance work has appeared in a variety of publications across Canada.
By Brad Peters
Schizophrenia Magazine
A distinguished 20-year career in the United States military. A single mother. Fighting to ensure the optimal level of health care for her family. Jenny Holloway can boast (not that she would) of succeeding at all of these things. Clearly, Holloway is a strong, capable woman. You have to be to succeed in the military or to survive as a single parent. And as anyone who has tackled the medical system knows, victories aren?t won by weak or half-hearted efforts. Holloway has needed to be strong to survive. However, despite her mental fortitude, nothing prepared her for the day she first heard her 13-year-old son, Kole, tell her that
he wanted to kill himself.
?The first time he said he was suicidal, he?d had a really big meltdown earlier that day. He had actually broken all the glass in my house,? she recalls. ?You need to picture your house with the entire floor just covered in glass. I was hiding in the bathroom because I didn?t want to become a victim. He would have?I don?t want to call it a tantrum, because that?s not what it was, but a meltdown and then he would call 911. He would call the police on himself.?
Kole?s ?meltdown? was not due to a teenage temper tantrum, but it was a result of his dual diagnosis of autism and childhood onset schizophrenia. After emergency services arrived at their home, Kole and his mother were taken to the hospital where they waited for an agonizingly long 17 hours until the facility determined how best to treat Kole. It was during this time, while confined to a hospital bed, that Kole, exhausted from his rampage, turned to his mother and said he just didn?t want to live anymore. He didn?t want to go through this again.
Early evidence
Sadly, at this point in their lives, Holloway had endured heartbreak and turmoil many times. The dedicated mother recalls how the first evidence of schizophrenia surfaced in the lives of a small family already struggling with the demands and special requirements of an autistic child. Kole was 8 years old when he first started hearing voices. Providing a dedicated Christian home for her family, when Kole told his mother that he was ?hearing people talking in his head,? Holloway initially assumed that Kole was working through his faith and perhaps his conscience was developing. Holloway soon discovered that was not the case: ?After all, God and the devil don?t battle it out in the heads of little boys.?
For Holloway, it became clear that her son needed additional help when he refused to play his video game. ?He just stopped playing with his PlayStation. He wouldn?t even enter his name into the game anymore. When I asked him why, he said he didn?t want to because then they would find him. Then I asked him, ?Who will find you?? And he answered: ?Those voices in my head.?
?That?s when I knew we had a new problem.?
Alone in the battle
And that new problem led to several others as Holloway began exploring just what a diagnosis of childhood onset schizophrenia coupled with autism meant. Unfortunately, Holloway has had to traverse those unknown waters alone. While she is quick to point out the excellent care and treatment Kole has received for both of his illnesses, for her it has been a different story.
?There really hasn?t been a lot of support for me. For Kole, his workers have been great, but for me, I?ve pretty much had to learn everything on my own. Outside of a dear woman at church, whose son is also autistic?she has been great. But besides that, there hasn?t been a lot of support or teaching for me.?
So for Holloway, that means a great deal of reading and research to stay on top of the latest discoveries and treatments for her son. Through her continual studies and the laboratory of her life?Holloway has discovered the value of two things in particular that are crucial to Kole?s, and therefore her own, well-being.
The first is medication. ?There is no more wonderful drug in the world than clozapine,? she says without an ounce of overstatement in her voice. ?It has totally changed things for Kole. It has given me my son back. When we have to be admitted to hospital (after a ?meltdown?), it is the first thing that I ask the doctors to prescribe. It brings him back.?
Education has also been key for both Holloway and Kole. She now has her son in an ?excellent, Level 5 school? in Baltimore, Maryland. It means getting up early for the long bus ride, as Baltimore is 90 minutes from their home, but the schooling and structure in Kole?s life (who functions at the level of a 5-to 7-year-old, but cannot read) has had a great impact.
But despite the work that she has done with Kole, the future for the family is uncertain. Living with and caring for Kole has not been easy on his older siblings, both of whom have left home. And while Kole?s mental development is curtailed, physically he is a normal, growing teenage boy, who sometimes becomes extremely violent. It is this reality that weighs heavily on his mother?s mind.
?I?m not sure how much longer I can handle Kole,? she says. ?It?s tough being hit regularly. And he?s getting bigger. The last thing I want to do is to consider residential care for him, but I don?t know. It would just break his heart not to be here with me, but I just don?t know??
The research continues
Experts in the mental health field continue to gather information about childhood onset schizophrenia. Are cases like Kole?s increasing? Is childhood onset schizophrenia on the rise?
Not surprisingly, there are as many different answers to these questions as there are schizophrenia patients. However, in its study of childhood onset schizophrenia, the National Institute of Mental Health (NIMH) made some interesting discoveries. Published material from the institute highlights the work being done in the field of genetics to identify schizophrenia spectrum disorders?and other illnesses: ?In addition to studies of brain structural abnormalities, researchers are also examining a group of measures associated with genetic risk for schizophrenia. Early onset cases of illness have recently proven crucial in the discovery of genes linked to other genetically complex disorders like breast cancer, Alzheimer?s and Crohn?s diseases. Hence, children with schizophrenia and their families may play an important role in deciphering schizophrenia?s molecular roots. Evidence suggests that the rate of genetically linked abnormalities is twice as high in children as in adults with the illness. Similarly, schizophrenia spectrum disorders, thought to be genetically related to schizophrenia, are about twice as prevalent among first-degree relatives of childhood-onset patients. In one recent study, a third of the families of individuals with childhood onset schizophrenia had at least one first-degree relative with a diagnosis of schizophrenia, schizotypal, or paranoid personality disorder. This profile of psychiatric illness is remarkably similar to that seen in parents of adult onset patients, adding to the likelihood that both forms share common genetic roots. Other anomalies associated with adult schizophrenia, such as abnormal eye movements, are also more common in families of children with the illness.? (NIMH, 2001)
Perhaps it?s due to her years of dealing with Kole?s situation or it may be due to her military training, but Jenny Holloway describes her son?s condition, and their day-to-day life dealing with schizophrenia and autism, with the same clinical precision as the NIMH findings above. However, the one thing that the institute doesn?t mention?and the one thing that is abundantly evident in Holloway?s approach to her son?s illness?may be the one thing that makes the largest difference of all: A parent?s love.
Brad Peters lives in Niagara Falls, Ontario with his wife and two young children. He is a daily newspaper editor whose freelance work has appeared in a variety of publications across Canada.
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