David Baxter PhD
Late Founder
Parenting a mentally ill child
By Melissa Churly, Schizophrenia Magazine
Summer 2010
The challenges, the stigma, the strength to cope
His rages were ugly. Fits of yelling, shrieking, hitting, swearing, kicking, and slamming had become daily occurrences. These weren't the normal tantrums of a young boy. His mother, Monica Kriese, was certain of that.
"When he raged, it was ugly," recalls the Salmon Arm, British Columbia, resident. "At one point I thought, ?Is he truly possessed?' He [would say] the most foul things. He would put swears together to make up even more obscene swears. It was scary to see that in my child. It was scary to see him get so worked up and so worn out and so tired."
As early as age 3, Kriese's son Cameron was exhibiting dangerous and disruptive behaviors. "If he could find matches or a lighter, he liked to play with them. We had a gas stove and I once caught him putting a pipe cleaner into the flame," she says.
By age 5, Cameron had been kicked out of four daycares. "The daycares didn't want to keep him any longer. He couldn't get along with the other kids. He was too hard to deal with and his explosions were getting stronger."
At first Kriese blamed her parenting abilities. "I thought maybe there was something I was neglecting to do for him or that as a single parent, my need to work was having an impact on him." So she took Cameron―several times―to see the doctor. But each time she was told there was nothing wrong.
"In kindergarten, they told me he needed to be medicated because he might have ADHD (attention deficit/ hyperactivity disorder)," Kriese says. "I took him to the pediatrician, but she couldn't see any one strong characteristic―not even ADHD―because at times Cameron could sit for hours and play with his Lego or plasticine. I was told it was all in my head and that he [was] just a normal boy with normal boy behaviors. But I just knew something was terribly wrong."
Frustrated, stressed, and tired, Kriese says she was "at wits end," feeling isolated and helpless.
"I had no one to help me with my son," she says. "no family in town and friends who no longer wanted to have us around due to his behavior. I felt alone and my son's issues were affecting my health."
In grade 3, Cameron was finally diagnosed with childhood bipolar disorder.
Finding help isn't always easy
Kriese's experience is not unique. Just raising a child is stressful and demanding, but raising a child who suffers from a mental illness brings significant challenges to a parent's skills and resources.
"There's a variety of challenges and some of those depend on the nature of the child's mental illness and how the child's mental illness presents," says Nadine Kaslow, a clinical psychologist and professor at Emory University in Atlanta, Georgia. "Parents can struggle with an assortment of emotions. If you have a child who is misbehaving all the time and getting into all sorts of trouble, then the parents may be mad at the child and very frustrated with the child. If the child has a psychotic illness or manic depression, parents might just be very worried about their child. It can range from sadness to anger, to frustration, to even a sense of helplessness."
For Jennifer Robbins, an overwhelming sense of helplessness is something she faces every day. The Michigan native says she often feels as though she has no idea how to help her 9-year-old son.
"There aren't a whole lot of resources to help," she says. "He's not suffering academically in school, so I was told he couldn't be put into the specialized education program. But he needs help learning how to deal with his emotions and some of his social behaviors."
Robbins says there is frequently a high level of stress at home when her son is going through a rough period. He was diagnosed with ADHD; his emotions can be quite intense, he gets frustrated easily, and Robbins says she doesn't know what to do.
"Right now I'm in the process of finding some counselling services for him and it's been really tough because we live in a small town. When I called my insurance company, they gave me the numbers of three places in the area. One of the places was closing and one of the providers had recently passed away. So two out of three weren't even available anymore. There just aren't a lot of options."
A major challenge for parents with mentally ill children is the barrier to services and a shortage of children's mental health professionals, says Darcy Gruttadaro, director of the National Alliance on Mental Illness' (NAMI) Child and Adolescent Action Center. "In our nation, there are about 7,500 child and adolescent psychiatrists with a need of about 20,000. So you have a lot of communities ― particularly rural and frontier communities ― in which it is very difficult for families to access psychiatric services for their child. The shortage is not just in the child psychiatry area, but it's also with psychologists and with social workers. As a result, many parents are forced to be the case manager for their child."
When Deborah Cavitt's son was suffering from anorexia, the shortage of services was so bad that she feared for her son's life. "I found that the places that had services or programs for my son were booked for months and he was in immediate need of hospitalization," Cavitt says. "It was pretty frightening knowing that there was nothing there and no way to rush the process."
The Minnesota resident was forced to travel to North Dakota in order to access services for her son.
Grasping for help
The weak mental health infrastructure in many U.S. communities like Cavitt's often leads parents to turn to the child welfare and juvenile justice systems to get services for their children.
"Some families are told that if they want to get help for their child, they need to call the police or they need to turn to the court system because that's the only way. But a lot of times, that results in their child getting criminal charges," says Gruttadaro. "Those who try to access services through the child welfare system find that it's not very welcoming either. The entire orientation of the system is towards abusive and neglectful parents, so it's not very warm and helpful to parents at a time of often their greatest need."
In some extreme cases, Gruttadaro says parents are faced with the decision to give up custody of their child to the State in order for them to get the services and supports they need. "It's called custody relinquishment: Families are told they have to give up custody of their child in order to access services. This is a very significant sign of how difficult it is to access services."
Kim Williams knows first hand what it feels like to face this challenge. Her 17-year-old son was diagnosed with schizophrenia nearly a year ago and requires residential treatment. "We have exceeded what our insurance is able to fully cover and we do not have the resources to pay. It costs a little over $300 a day for his treatment," she says.
As a result, Williams has given up partial guardianship of her son so that the government will pay for the services, treatments, and supports that he needs. "It's been a very difficult thing for me to do because having my children has been one of my most proud accomplishments. I feel a sense of giving my child over."
Even though Williams will remain as her son's primary caregiver and he will return home upon being released from residential treatment, it was a tough decision for her to make. "I still find myself thinking, ?What did I do wrong?' or ?What could I have done differently?' I know better than to think this way, but it's still hard not to. I'm human."
The situation in Canada isn't much different.
"The child and youth mental health agencies operate on a worst come, first serve basis," says Sarah Cannon, executive director of Parents for Children's Mental Health. "If you have a child who is diagnosed with a mental illness, you're not going to get any services until that child is in a crisis―which usually means having attempted taking their life."
Funding for child and youth mental health services has been cut in almost every province in the country and many agencies are struggling to serve the needs of their clients. "Over the past 16 years, there has only been a 7 percent increase in funding for child and youth mental health services in Ontario, and inflation has been [somewhere near] 36 percent," says Cannon.
The shortage of mental health professionals and funding also frustrates those who remain in the field.
"It's just a constant battle of where you go to get services. For my daughter Emily, I have to travel 45 minutes to get her to her child psychiatrist. There have been so many cuts that many workers are leaving the child and youth services agencies to do the same type of work in the education system or in private practice because there just isn't the funding to support them."
The fear of stigma
Another major challenge that parents often face is the overwhelming stigma of mental illness. "We're often labelled as bad parents or told that we don't know how to raise our children effectively," says Cannon, whose 13-year-old daughter suffers from bipolar disorder.
In order to acquire services for her daughter, Cannon says she had to undergo a battery of surveys and interviews that questioned her abilities as a parent. "Before I even qualified to get any services for Emily, I had to go through three different parenting courses and it wasn't until I was deemed an okay parent that they then would proceed to the next step and look at Emily's illness and ways to help stabilize it.
"If I went to my doctor and my child was diagnosed with diabetes, I would not be required to go to nutrition classes or cooking classes before they would treat my daughter. They would make sure that my daughter was treated and that we as a family had the necessary tools and ability to support her through her illness. But it doesn't work that way with children's mental health."
For Robbins, the stigma is such a major barrier that she has kept her son's condition a secret from all but her close family, doctors, and teachers. "I'm always hoping to meet or get connected with another parent or family who might be going through similar issues, and yet my fear of being stigmatized or alienated prevents me from opening up too much. We're in a very small community and I'm afraid that if I say something people will basically run for the hills."
She's also worried about the negative ways that people may view her son.
"I don't want to have him labelled as that ?mentally ill kid' or that kid to stay away from who has a mental illness," says Robbins.
Kriese says she faced stigma from her own family. "My family didn't get it. They often just felt that I needed to be firmer with him. They disagreed with any form of medication and said he needed to stay off the white sugar, white flours, the dyes, and the food additives―which we had been doing to some extent―but the behaviors weren't getting any better."
Feeling the pinch
With all of the doctors' appointments, counselling sessions, school meetings, and evaluations that a child may need to attend, it can be difficult for some parents to juggle all of this and still find time to work.
"Many of us [parents] have had to go to a one-income family because having a child with a mental illness is a full-time job on its own," says Cannon. "Parents are being called to pick their children up because of a suspension from school, there are also repeated meetings with the school, repeated doctors' appointments, and there's no support for that."
When Kriese's son was in kindergarten, she was told he could only attend if she went with him, but this meant she had to work fewer hours and thus make less money. "I felt that kindergarten was very important for him because I knew he needed that social environment. So I went to class with him and this impacted my ability to earn a living that much more," she says. "I was in danger of losing my main client but I went anyway."
Cannon says her family felt the pinch when they had to pay out of pocket for some of her daughter's medications. "Because there isn't a lot of research done on using medications on children, they don't have what they call a pediatric designation, so a lot of insurance companies won't cover the expenses for the medication."
At one point, Emily's medications cost more than $700 per month and Cannon says she had to start working a second job in order to make ends meet. "I was working my full time job and a second job so I could get her the medication while still trying to maintain her stability and my family's stability. You can imagine the type of pressure that puts on a family. And as the stress level at home grew, so did my daughter's symptoms and her level of anxiety and agitation."
Parents often face an overwhelming sense of isolation when they have a child with a mental illness. "Most of my friends were pretty distant because I had this really bad child and they didn't want to be around him or invite him over. He never got invited to any birthday parties; he's only been to one in his whole 11 years. I grieved for the loss of his childhood and all the normal things that kids should be doing, [like] the loss of having friends and buddies over because he just couldn't play well."
The friends who did try to understand what she was going through would invite them over, but Kriese says she was always nervous. "I was always walking on eggshells, wondering when his next explosion was going to come, when something was going to get broken. It got to the point where I even started ostracizing us from those occasions."
The isolation extended to the medical professionals Kriese was dealing with, too. "I was worried and anxious about so many things. I remember calling his mental health clinician and asking for help and support, and I was reminded that it was my son that was the patient and there really wasn't a lot of time for parents."
Power in numbers
Despite the many challenges, it is possible to be successful at raising a child with a mental illness, Cannon says. The key is to surround yourself with a support system of people who are either going through or have gone through the same experiences you are.
"It's important to know that you are not alone―you aren't the worst mother in the world because there are thousands of other mothers who are experiencing the same things," she says. Join a parents' support group; other parents can offer advice and knowledge that is impossible to find elsewhere. "There are going to be parents who have accessed services that you have no idea how to access or that you didn't know existed, and they are going to be able to help navigate you through the system."
Another key to success is taking care of yourself.
"Parenting a child with a mental illness is stressful and challenging and parents need to do their best to make sure that they have the energy to do just that," says Kaslow. "That means taking care of themselves―whether that is exercising, working, or getting counselling―whatever they need to do."
Kriese's son Cameron had a rough early childhood, but things appear to be settling down a bit now that he is maturing. With new medications he's relatively stable, but he still has rough and dark times and he still has to be home schooled.
"I teach him that all of us have something in our lives that isn't the way we want it to be, but we make the best of what we have," Kriese says. "I tell him that he can have a very good and fulfilling life, it's just that it takes work."
Melissa Churly is a freelance print journalist and graduate of Ryerson University. She is based in Mississauga, Ontario.
By Melissa Churly, Schizophrenia Magazine
Summer 2010
The challenges, the stigma, the strength to cope
His rages were ugly. Fits of yelling, shrieking, hitting, swearing, kicking, and slamming had become daily occurrences. These weren't the normal tantrums of a young boy. His mother, Monica Kriese, was certain of that.
"When he raged, it was ugly," recalls the Salmon Arm, British Columbia, resident. "At one point I thought, ?Is he truly possessed?' He [would say] the most foul things. He would put swears together to make up even more obscene swears. It was scary to see that in my child. It was scary to see him get so worked up and so worn out and so tired."
As early as age 3, Kriese's son Cameron was exhibiting dangerous and disruptive behaviors. "If he could find matches or a lighter, he liked to play with them. We had a gas stove and I once caught him putting a pipe cleaner into the flame," she says.
By age 5, Cameron had been kicked out of four daycares. "The daycares didn't want to keep him any longer. He couldn't get along with the other kids. He was too hard to deal with and his explosions were getting stronger."
At first Kriese blamed her parenting abilities. "I thought maybe there was something I was neglecting to do for him or that as a single parent, my need to work was having an impact on him." So she took Cameron―several times―to see the doctor. But each time she was told there was nothing wrong.
"In kindergarten, they told me he needed to be medicated because he might have ADHD (attention deficit/ hyperactivity disorder)," Kriese says. "I took him to the pediatrician, but she couldn't see any one strong characteristic―not even ADHD―because at times Cameron could sit for hours and play with his Lego or plasticine. I was told it was all in my head and that he [was] just a normal boy with normal boy behaviors. But I just knew something was terribly wrong."
Frustrated, stressed, and tired, Kriese says she was "at wits end," feeling isolated and helpless.
"I had no one to help me with my son," she says. "no family in town and friends who no longer wanted to have us around due to his behavior. I felt alone and my son's issues were affecting my health."
In grade 3, Cameron was finally diagnosed with childhood bipolar disorder.
Finding help isn't always easy
Kriese's experience is not unique. Just raising a child is stressful and demanding, but raising a child who suffers from a mental illness brings significant challenges to a parent's skills and resources.
"There's a variety of challenges and some of those depend on the nature of the child's mental illness and how the child's mental illness presents," says Nadine Kaslow, a clinical psychologist and professor at Emory University in Atlanta, Georgia. "Parents can struggle with an assortment of emotions. If you have a child who is misbehaving all the time and getting into all sorts of trouble, then the parents may be mad at the child and very frustrated with the child. If the child has a psychotic illness or manic depression, parents might just be very worried about their child. It can range from sadness to anger, to frustration, to even a sense of helplessness."
For Jennifer Robbins, an overwhelming sense of helplessness is something she faces every day. The Michigan native says she often feels as though she has no idea how to help her 9-year-old son.
"There aren't a whole lot of resources to help," she says. "He's not suffering academically in school, so I was told he couldn't be put into the specialized education program. But he needs help learning how to deal with his emotions and some of his social behaviors."
Robbins says there is frequently a high level of stress at home when her son is going through a rough period. He was diagnosed with ADHD; his emotions can be quite intense, he gets frustrated easily, and Robbins says she doesn't know what to do.
"Right now I'm in the process of finding some counselling services for him and it's been really tough because we live in a small town. When I called my insurance company, they gave me the numbers of three places in the area. One of the places was closing and one of the providers had recently passed away. So two out of three weren't even available anymore. There just aren't a lot of options."
A major challenge for parents with mentally ill children is the barrier to services and a shortage of children's mental health professionals, says Darcy Gruttadaro, director of the National Alliance on Mental Illness' (NAMI) Child and Adolescent Action Center. "In our nation, there are about 7,500 child and adolescent psychiatrists with a need of about 20,000. So you have a lot of communities ― particularly rural and frontier communities ― in which it is very difficult for families to access psychiatric services for their child. The shortage is not just in the child psychiatry area, but it's also with psychologists and with social workers. As a result, many parents are forced to be the case manager for their child."
When Deborah Cavitt's son was suffering from anorexia, the shortage of services was so bad that she feared for her son's life. "I found that the places that had services or programs for my son were booked for months and he was in immediate need of hospitalization," Cavitt says. "It was pretty frightening knowing that there was nothing there and no way to rush the process."
The Minnesota resident was forced to travel to North Dakota in order to access services for her son.
Grasping for help
The weak mental health infrastructure in many U.S. communities like Cavitt's often leads parents to turn to the child welfare and juvenile justice systems to get services for their children.
"Some families are told that if they want to get help for their child, they need to call the police or they need to turn to the court system because that's the only way. But a lot of times, that results in their child getting criminal charges," says Gruttadaro. "Those who try to access services through the child welfare system find that it's not very welcoming either. The entire orientation of the system is towards abusive and neglectful parents, so it's not very warm and helpful to parents at a time of often their greatest need."
In some extreme cases, Gruttadaro says parents are faced with the decision to give up custody of their child to the State in order for them to get the services and supports they need. "It's called custody relinquishment: Families are told they have to give up custody of their child in order to access services. This is a very significant sign of how difficult it is to access services."
Kim Williams knows first hand what it feels like to face this challenge. Her 17-year-old son was diagnosed with schizophrenia nearly a year ago and requires residential treatment. "We have exceeded what our insurance is able to fully cover and we do not have the resources to pay. It costs a little over $300 a day for his treatment," she says.
As a result, Williams has given up partial guardianship of her son so that the government will pay for the services, treatments, and supports that he needs. "It's been a very difficult thing for me to do because having my children has been one of my most proud accomplishments. I feel a sense of giving my child over."
Even though Williams will remain as her son's primary caregiver and he will return home upon being released from residential treatment, it was a tough decision for her to make. "I still find myself thinking, ?What did I do wrong?' or ?What could I have done differently?' I know better than to think this way, but it's still hard not to. I'm human."
The situation in Canada isn't much different.
"The child and youth mental health agencies operate on a worst come, first serve basis," says Sarah Cannon, executive director of Parents for Children's Mental Health. "If you have a child who is diagnosed with a mental illness, you're not going to get any services until that child is in a crisis―which usually means having attempted taking their life."
Funding for child and youth mental health services has been cut in almost every province in the country and many agencies are struggling to serve the needs of their clients. "Over the past 16 years, there has only been a 7 percent increase in funding for child and youth mental health services in Ontario, and inflation has been [somewhere near] 36 percent," says Cannon.
The shortage of mental health professionals and funding also frustrates those who remain in the field.
"It's just a constant battle of where you go to get services. For my daughter Emily, I have to travel 45 minutes to get her to her child psychiatrist. There have been so many cuts that many workers are leaving the child and youth services agencies to do the same type of work in the education system or in private practice because there just isn't the funding to support them."
The fear of stigma
Another major challenge that parents often face is the overwhelming stigma of mental illness. "We're often labelled as bad parents or told that we don't know how to raise our children effectively," says Cannon, whose 13-year-old daughter suffers from bipolar disorder.
In order to acquire services for her daughter, Cannon says she had to undergo a battery of surveys and interviews that questioned her abilities as a parent. "Before I even qualified to get any services for Emily, I had to go through three different parenting courses and it wasn't until I was deemed an okay parent that they then would proceed to the next step and look at Emily's illness and ways to help stabilize it.
"If I went to my doctor and my child was diagnosed with diabetes, I would not be required to go to nutrition classes or cooking classes before they would treat my daughter. They would make sure that my daughter was treated and that we as a family had the necessary tools and ability to support her through her illness. But it doesn't work that way with children's mental health."
For Robbins, the stigma is such a major barrier that she has kept her son's condition a secret from all but her close family, doctors, and teachers. "I'm always hoping to meet or get connected with another parent or family who might be going through similar issues, and yet my fear of being stigmatized or alienated prevents me from opening up too much. We're in a very small community and I'm afraid that if I say something people will basically run for the hills."
She's also worried about the negative ways that people may view her son.
"I don't want to have him labelled as that ?mentally ill kid' or that kid to stay away from who has a mental illness," says Robbins.
Kriese says she faced stigma from her own family. "My family didn't get it. They often just felt that I needed to be firmer with him. They disagreed with any form of medication and said he needed to stay off the white sugar, white flours, the dyes, and the food additives―which we had been doing to some extent―but the behaviors weren't getting any better."
Feeling the pinch
With all of the doctors' appointments, counselling sessions, school meetings, and evaluations that a child may need to attend, it can be difficult for some parents to juggle all of this and still find time to work.
"Many of us [parents] have had to go to a one-income family because having a child with a mental illness is a full-time job on its own," says Cannon. "Parents are being called to pick their children up because of a suspension from school, there are also repeated meetings with the school, repeated doctors' appointments, and there's no support for that."
When Kriese's son was in kindergarten, she was told he could only attend if she went with him, but this meant she had to work fewer hours and thus make less money. "I felt that kindergarten was very important for him because I knew he needed that social environment. So I went to class with him and this impacted my ability to earn a living that much more," she says. "I was in danger of losing my main client but I went anyway."
Cannon says her family felt the pinch when they had to pay out of pocket for some of her daughter's medications. "Because there isn't a lot of research done on using medications on children, they don't have what they call a pediatric designation, so a lot of insurance companies won't cover the expenses for the medication."
At one point, Emily's medications cost more than $700 per month and Cannon says she had to start working a second job in order to make ends meet. "I was working my full time job and a second job so I could get her the medication while still trying to maintain her stability and my family's stability. You can imagine the type of pressure that puts on a family. And as the stress level at home grew, so did my daughter's symptoms and her level of anxiety and agitation."
Parents often face an overwhelming sense of isolation when they have a child with a mental illness. "Most of my friends were pretty distant because I had this really bad child and they didn't want to be around him or invite him over. He never got invited to any birthday parties; he's only been to one in his whole 11 years. I grieved for the loss of his childhood and all the normal things that kids should be doing, [like] the loss of having friends and buddies over because he just couldn't play well."
The friends who did try to understand what she was going through would invite them over, but Kriese says she was always nervous. "I was always walking on eggshells, wondering when his next explosion was going to come, when something was going to get broken. It got to the point where I even started ostracizing us from those occasions."
The isolation extended to the medical professionals Kriese was dealing with, too. "I was worried and anxious about so many things. I remember calling his mental health clinician and asking for help and support, and I was reminded that it was my son that was the patient and there really wasn't a lot of time for parents."
Power in numbers
Despite the many challenges, it is possible to be successful at raising a child with a mental illness, Cannon says. The key is to surround yourself with a support system of people who are either going through or have gone through the same experiences you are.
"It's important to know that you are not alone―you aren't the worst mother in the world because there are thousands of other mothers who are experiencing the same things," she says. Join a parents' support group; other parents can offer advice and knowledge that is impossible to find elsewhere. "There are going to be parents who have accessed services that you have no idea how to access or that you didn't know existed, and they are going to be able to help navigate you through the system."
Another key to success is taking care of yourself.
"Parenting a child with a mental illness is stressful and challenging and parents need to do their best to make sure that they have the energy to do just that," says Kaslow. "That means taking care of themselves―whether that is exercising, working, or getting counselling―whatever they need to do."
Kriese's son Cameron had a rough early childhood, but things appear to be settling down a bit now that he is maturing. With new medications he's relatively stable, but he still has rough and dark times and he still has to be home schooled.
"I teach him that all of us have something in our lives that isn't the way we want it to be, but we make the best of what we have," Kriese says. "I tell him that he can have a very good and fulfilling life, it's just that it takes work."
Melissa Churly is a freelance print journalist and graduate of Ryerson University. She is based in Mississauga, Ontario.
