Article from Saturday’s Toronto Star, by Joanna Smith, part of a series.
Mental health: The challenges of having a mentally ill parent
Peter McCabe/For the Toronto Star
Mike Santoro, 44, who has schizo-affective disorder, and his wife Bonnie Parsons, 42, work hard to be open and honest with their daughter, Chelsie, about living with mental illness.
MONTREAL—Chelsie Santoro has a beagle, a sparkly temporary tattoo fading from her neck and a dad who lives with mental illness.
“Say you had a dog and you’re not controlling it,” the 9-year-old Montreal girl says one afternoon during a quiet chat on the couch in her basement playroom.
“Well, it’s going to get out of hand and you’re going to be very frustrated about it. It’s the same thing about mental illness — that you have to control it to be happy.”
Chelsie’s father, Mike Santoro, has schizo-affective disorder, most easily explained as a combination of bipolar disorder and schizophrenia — dizzying highs and debilitating lows blended with a loss of contact with reality.
Most of the time the 44-year-old man, who promotes mental well-being through public speaking engagements and a website called Mike’s Story, is able to control his illness with prescription drugs and coping strategies.
But when he has to change his medication, notes wife Bonnie Parsons, she walks on eggshells. As for Chelsie, “(I) go with the flow,” she says of his bad days.
Still, Parsons, 42, who works in the main office of a high school, says she and Santoro started a family with eyes wide open to the challenges they would face with one parent having a severe mental illness.
Children growing up with a mentally ill parent, experts say, are vulnerable to an array of difficulties, including: low self-esteem, trouble with relationships, taking on adult responsibilities, guilt, poor communication skills, risky behaviours involving drugs, alcohol and sex, trouble fitting in or performing well at school, feelings of isolation and alienation due to stigma, and the disruption that comes with hospitalization of a parent or, in many cases, removal of the kids from the home.
They may also develop mental-health issues themselves, because of hereditary factors and the strain of growing up in a difficult environment.
And often these children fall through the cracks as health-care and social programs focus on the affected adults, offering few services to their children.
Statistics on the number of Canadian kids growing up with mentally ill parents are hard to come by, but an oft-repeated estimate is that one in five people will develop a mental illness at some point in their lifetime.
For an article published in Child and Adolescent Psychiatry and Mental Health in 2009, a group of Ontario-based researchers used data from the Canadian Community Health Survey to estimate there were 570,000 children under age 12 — about 12.1 per cent — who lived with parents who had mood, anxiety or substance-abuse disorders in the year leading up to the survey.
The study authors believed the real number was higher.
Chelsie understandsthat, in the summer, her dad cannot always accompany her and mom to the beach, because the heat aggravates the side effects of his medication.
Or that not every day is a good day to play that game in which he picks her up and swings her around, the one that makes her giggle.
Her dad remembers a time in the spring when he was preparing for a string of out-of-town presentations while Chelsie had the day off from school.
“It was like a pressure cooker,” Santoro says while sitting across from Bonnie at their kitchen table. “I was about to explode.”
“Chelsie, you realize Daddy’s having a bad day today,” Santoro recalls having told his daughter.
“Yes, Daddy,” she replied.
“She basically made me understand that it was okay to be the way I was that day,” Santoro says.
The couple says they strive to be open and honest with Chelsie.
“If she’s old enough to ask the question, she’s old enough to hear the answer,” Santoro argues.
Not every parent follows this approach.
To research how children perceive mental illness, Elaine Mordoch, an assistant professor of nursing at the University of Manitoba, interviewed 22 Canadian children and teens whose parents had a primary diagnosis of bipolar disorder, schizophrenia or depression and were receiving treatment.
One 9-year-old boy had overhead his family discussing his father’s condition and his inability to get life insurance — presumably in the event of suicide.
The child described mental illness in those terms.
“It’s not that fun, you don’t get life insurance,” said the boy, according to the 2010 article Mordoch wrote for the Journal of the Canadian Academy of Child and Adolescent Psychiatry. “That’s kinda (sic) bad thing, I think.”
The boy paused before asking a burning question.
“What’s life insurance?”
Susan Nathiel, a family therapist in Hamden, Conn., interviewed many women whose mothers had mental illness for her 2007 book Daughters of Madness, in which she chronicles in harrowing detail what happens to families without a support network or the honesty required to speak to children about mental illness.
“Young kids do pick up the vibes of strange things happening, and if they don’t have an explanation, they make up one,” Nathiel said in an interview with the Star. “The made-up one is usually a lot worse than what is actually happening.”
The list of thingsthat Joanne Smith (no relation to this writer) was told while she was growing up is, in hindsight, heartbreakingly simple.
“Your mother is ill.”
“It’s not your fault.”
“This is what she has.”
“This is the treatment.
“Don’t worry: we’re going to take care of things.”
That last one makes her laugh.
Smith, a 61-year-old who lives in Montreal’s West Island, says it was painfully obvious her mother was extremely unwell years before she was eventually given a diagnosis of schizophrenia.
She managed to keep the house clean and rose early every morning to go to work, but the words coming out of her mouth could be gibberish, and Smith was astonished when relatives would nod as they listened to her as if nothing was wrong.
She drank most nights, as did Smith’s father, and they could be violent with each other.
Mom once showed up at Smith’s high school, telling the principal that students were trying to poison her daughter.
Smith left home at 15 to study at a convent in small village near Lancaster, Ont. Within a week, her mother broke down physically and mentally, spending six months at a mental hospital and finally getting a diagnosis and treatment.
Their father decided he was incapable of caring for Smith’s two younger sisters on his own, so they were placed in separate foster homes.
For years, Smith says, she felt guilty about wanting to leave her chaotic home to have a better chance of graduating from high school, and thus sparking the series of events that tore her family apart.
Smith, who used to facilitate a support group for the adult children and siblings of people with mental illness at the Montreal community organization AMI Québec, uses the imagery of an octopus to describe how her dysfunctional childhood has affected her life as an adult.
Its tentacles wrapped around her relationships, her choice to go into information technology as a career, her ability to communicate, her low self-esteem and other things she is only beginning to realize — despite having spent thousands of dollars on years of therapy — now that she is retired and has more time to think about it.
“Being a child of someone who suffers from mental illness can run into all aspects of your life,” she says.
Early research intothe impact parents with mental illness have on the well-being of their children focused on hereditary factors: what was the increased likelihood that a child whose mother or father had schizophrenia would develop the disorder too?
The debate of nature versus nurture still rages, as it does with much else, but since the true causes of mental illness remains unresolved, there has been an increasing focus on the psychosocial impact on the children of mentally ill parents.
Dr. Simon Davidson, a psychiatrist and chief of specialized mental health care for children and youth at the Children’s Hospital of Eastern Ontario and The Royal Ottawa Mental Health Care Centre, says the stress on the kids can manifest itself in a variety of ways.
“In some cases, you can see role reversals where the kids are really trying to take responsibility for the parents to make sure that they take their medications, that they get to their appointments on time and all that sort of stuff, often at a cost to their own personal development,” he notes.
“So, their schooling might suffer, their friendships might suffer, but the integrity of the family stays whole and these young people do a wonderful job well in excess of their years.
“Then you get others that just get so ticked off with everything and get themselves into high-risk situations. They maybe get into relationships inappropriately, they maybe try smoking and drugs and alcohol early, they may themselves have mental health problems.”
But Davidson observes that there are also some families with a mentally ill parent in which “the kids have a very normal developmental profile. Often in those family situations, the support network within the family, including from (the ill parent), is generally a whole lot better.”
Nursing professor Mordoch acknowledges that while working as an acute psychiatry nurse, she saw mentally ill parents at their worst as they arrived at the hospital in crisis. Later, when she became a researcher, she learned a lot from children who spoke of their love for their parents and stressed that they were capable of good things, too.
She chuckles as she recalls how one child put it: “It’s not 24-7, you know.”
“The children had the ability to see their parents holistically and to validate the contributions that the parent had made to their experience,” Mordoch says. “I was not really expecting that. I was expecting more tales of woe.”
Lily, 17, is fiercely loyal to her father, quick to emphasize how kind and loving he is before describing his decades-long struggle with addiction to alcohol and hard drugs and the mood disorder that has gone undiagnosed.
“My dad is a normal person, but exaggerated,” she says while sitting on a bench on the lakeshore boardwalk in her hometown of Burlington, Ont.
She chose not to use her real name to respect the privacy of her father.
“His good times are super-amazing and then his bad times are terrible and some of the issues that he has are overwhelming for him and for our family,” says Lily, who is now in her first year of university.
There is the backyard littered with projects that were very exciting when he started working on them.
Now, he cannot get out of bed to finish them.
There was the time last fall when he quit working — sold his company, even — without telling his wife.
Now, he is burning through money without explanation.
He has been to rehab three times in the past nine years.
Around Christmas last year, Lily found her father passed out in the living room.
She hid her discovery from her mother, fearing that letting her know would precipitate a marital breakdown that might make her father worse.
“Sometimes, I try and edit a bit so that he can stay safe and stay at home,” Lily says.
When it happened again the next day, Lily found the bottle of pills that he had overdosed on and realized she could no longer keep a secret that could turn deadly.
“I would like to have someone see me graduate or walk me down the aisle and I don’t really know if that’s going to happen,” she says. “He sometimes makes comments to that effect, that he doesn’t want to be living a lot longer, and I don’t want to hear that. It’s kind of scary for me.”
Lily is keenly aware of the effect growing up with her father has had on her so far, and she sees it as both a negative and positive.
She openly admits to acting out and engaging in risky behaviour when things are tough at home, including smoking “a lot of pot” — she is happier now that she has stopped — and having to be hospitalized with alcohol poisoning after drinking too much on a trip overseas with a student group a couple of years ago.
“That was kind of a kick in the pants for me,” Lily says, remembering telling herself that yes, there were consequences to her behaviour and that they pointed in the direction of her father.
She believes she is blessed for learning so many hard lessons so young.
“When I was 12, my mother used to call me her little 40-year-old. I’ve always been the one that talks to the adults and a bit mature for my age and that’s just another thing that has allowed me to deal with it a lot better. I think it’s a good thing.
“I just think that kids are tougher than everyone thinks,” Lily continues. “If I tell my story to one of my friends, I get the pity look . . . but when I think about my story myself, I don’t have a lot of sadness.”
Tomorrow: The cracks in the system. This project was funded by a Canadian Institutes for Health Research (CIHR) Journalism Award
- Will Hall was diagnosed with “schizoaffective disorder”; e recovered fully and was invited to speak last week to the APA. http://beyondmeds.com/2012/10/07/will-hall-speaks-to-apa/