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Raising a child with a mental illness

From Saturday's Globe and Mail

On a Monday morning in September, 2006, during what they call their "darkest of days," Heather Bishop and Sean Quigley committed their 10-year-old daughter, Erynn, to a psychiatric hospital.

The breaking point came after a Saturday shopping trip to a Sam's Club in their hometown of London, Ont. When Ms. Bishop casually suggested to Erynn that she put a toy back on the shelf, the girl's expression clouded, then she erupted into screams. There was no way to bring her back: Soon, she would be throwing punches. They had to get out of the store.

Mr. Quigley slung Erynn over his shoulder and Ms. Bishop abandoned the cart piled high with groceries, just as they had done dozens of time before. This was no simple tantrum. It was everyday life for the couple — trying to protect their daughter and everyone around her while she was consumed by rages she barely remembered afterward.

"She's not spoiled — she's sick," Ms. Bishop wanted to shout at the other shoppers, but she kept her head down.

"I hate you! I hate you!" Erynn shrieked in the car, wildly kicking the seats and flailing at Mr. Quigley's head while he tried to drive home. Ms. Bishop crouched low in the passenger seat and fumbled on her cellphone for the emergency after-hours line, begging them to find their daughter's psychiatrist.

He answered within minutes. "Are you safe?" he asked.

"Not really," Ms. Bishop said, weeping.

A week later, they helped Erynn pack a small suitcase and a collection of stuffed animals and hugged their only child goodbye at the hospital. She had never spent a night away from them before, but they were desperate and out of options.

Ms. Bishop manages stewardship and donor relations at the University of Western Ontario while Mr. Quigley works in theatre. For the previous three years, they had juggled their schedules around Erynn's appointments, ever since she had been diagnosed with bipolar disorder, which causes extreme mood swings.

Across Canada, about 800,000 families struggle with the stress and complications of raising a child with a mental illness. Often, like Ms. Bishop and Mr. Quigley that September afternoon, they feel they can't make it one more day.

In many ways, Erynn was a delight — witty, precocious and bold. At the age of 3, she corrected a stranger on the difference between an insect and an arachnid. As a preschooler, she watched Ms. Bishop leave the house on a bright morning and announced to her dad, "My mommy walks with grace and beauty in the sun." She read beyond her grade level and created complex, magical worlds of imagination.

From the time Erynn could speak, however, Ms. Bishop and Mr. Quigley suspected that something was wrong.

As Erynn herself describes it now, at 12: "I just stop thinking the right way and start thinking differently. I get a hate for people that I am angry at. I kind of just have to wait for it to blow over."

They knew she needed help. Finding that help, they quickly learned, is easier said than done.

Disbelief and denial

Many adult patients with mental illness, asked to explain where they think it began, go back to their youth. At least 70 per cent of cases of mental illness in adults can be traced back to childhood; many vividly recall the first frightening moment of infinite sadness or the anxiety that makes you want to strip off your own skin.

According to various studies, illnesses such as depression, anxiety and bipolar disorder affect 13 to 22 per cents of Canadian kids. But there is a lot of denial.

"I'm amazed at how many people don't believe mental illness exists in children," says Ian Manion, executive director of the provincial Centre for Excellence in Child and Mental Health at the Children's Hospital of Eastern in Ottawa.

In Canada's health-care system, mental health is an orphan — and children's mental health, it is said, an orphan's orphan. "Mental illness is the single most-pressing health issue for children, yet the public doesn't take it seriously and neither do health professionals," Dr. Manion says.

Young people tend to struggle more with anxiety and conduct disorders, while in adults there is far more depression and other mood disorders. As with adults, the extreme examples get the attention, as in the recent case in Alberta of a 12-year-old girl convicted of carrying out the gruesome slaughter of her family. (The trial of her much-older boyfriend continued this week.)

But most young people with mental illness suffer in silence, locked in their rooms, cutting themselves, crying and plotting suicide. Sometimes their parents are oblivious, or put it all down to a phase. But often their families suffer with them, unsure of where to turn in a system bogged down by turf wars, waiting lists and funding shortages.

Research suggests that early intervention is the key to better outcomes, but children have been largely left out of the limited resources available for mental health in this country. There are severe shortages of psychologists and psychiatrists — wait times extend six months or more.

Children are often treated by family doctors, who have little training in pediatric mental health and almost always end up prescribing antidepressants and antipsychotics, drugs that usually do not work, are not tested for kids and can have dangerous side effects.

When a crisis strikes, a child who is suicidal or psychotic may end up in an emergency department, but psychiatric beds in pediatric hospitals are few and far between. Most of them do not get even that far: A British Columbia study found that only one in four children with mental-health problems gets any treatment at all. Research in Ontario is even more damning, saying the figure is one in six.

"If only one in six adults who needed a hip got one, there would be a revolt," says Simon Davidson, a psychiatrist at the Children's Hospital of Eastern Ontario. "So how can we tolerate a situation where one in six sick children get care?"

The cost of not getting proper care can be tragically high. On Jan. 16 of this year, a mother returned home from work in the small town of Brockville, Ont., to find unmarked police cars in her driveway. Her son's friend had called them, worried about a text message her son had sent. They found his body hanging in the garage.

He had begun to withdraw in high school, skipping class and stealing their money and credit cards, then became more and more violent, pushing his mother down the stairs, locking his parents in the basement and throwing a knife at the house. He took an overdose of Tylenol in his first suicide attempt and smashed his hand through a window in what his parents believe was his second.

"It was like Dr. Jekyll and Mr. Hyde living with him," his mom recalls. "You would say something — 'What would you like for dinner?' — and he'd snap. We'd have no idea what the trigger would be."

But their concerns were all but dismissed by a series of teachers, social workers and psychiatrists who said he was just rebelling against parents who had spoiled him. He refused counselling. They could not force him into treatment at the age of 16, so they had him charged with stealing their car and alerted the police when he violated probation, hoping the courts would help.

Finally a court-ordered assessment suggested that he might be showing early signs of schizophrenia or a related illness. But since he would not agree to treatment, they would have to wait and see.

There was no time to wait. In four months, he was dead.

"If the system will not believe, and the system will not work with you…," his mother says, her voice trailing off. "It comes down to whoever screams the loudest."

Even then, it may not be enough.

'Rage of the dead'

"She was the loudest baby in the world," Mr. Quigley recalls with a grin, while Ms. Bishop fixes dinner in their London home and Erynn plays video games in her bedroom. "When she screamed, people literally walked away in terror."

Even as a toddler, she had extreme moods — no middle ground, either wild laughter or, as her dad puts it, "the rage of the dead," and often within the same hour.

At daycare, when she was 2, she started hitting the staff. Living then in Edmonton, her parents sought help, but were turned away, told there were no programs for kids until they turned 9.

After moving to London the next year, they squeezed Erynn into a six-month assessment program with a local service agency, only to be told that they did not qualify because they were not considered "a family in crisis."

Erynn was not setting fires, she was not being abused and her parents were not alcoholic, the agency said. Ms. Bishop deadpanned, "Would it help if I took up drinking?" But deep down she was beginning to panic.

She and Mr. Quigley were scared for their girl — and sometimes, though they hated to admit it, scared of her. She would fly into rages for the smallest reasons, flipping over tables with a strength that surprised them. The screaming could last for hours. Sometimes her parents had to hold her down so she would not hurt herself.

It was at their first appointment with a developmental pediatrician that they heard the possibility that their daughter, then 5, might have biopolar disorder — a disease they did not even know kids could get. The doctor was reluctant to pin her down so early, and prescribed Ritalin to treat attention deficit disorder.

When she was told about the medication after bedtime stories that night, Erynn asked, "Mommy, can I take the pills all my life?"

For the first time, Ms. Bishop recalls with tears, "I realized Erynn understood how different she was."

But Mr. Quigley and Ms. Bishop soon discovered, like so many families, that a diagnosis was just the start of more problems, at school and at home, while her psychiatrist struggled to find the best way to treat her.

Over the next seven years, Erynn was rotated through more than a dozen different medications, and experimental doses. To Mr. Quigley, it felt as though the doctors were standing a mile down the road from a small dart board, wearing blindfolds and hoping to hit the bull's eye.

At school, the situation was getting worse. Even with Erynn going only half days, the other parents were phoning the principal to complain about her disturbances. She was often sent home.

"The school would say, 'You need to tell her this behaviour is not appropriate.' " Ms. Bishop recalls, rolling her eyes. "Yes, because what we actually do, before she leaves the house in the morning, is we say, "You be sure to get in a few good punches today.' "

In Grade 1, the school set aside "a quiet room" for Erynn to take time-outs when she needed them. By Grade 5, the room had become a permanent study hall for Erynn and her teacher's aid. But they continued to fight the pressure to take her out of the regular school system and put her in a special-needs class. Erynn excelled academically under the right conditions and, as Mr. Quigley observes, "we knew that in order to live in the world, Erynn has to be in the world."

The struggle was taking a social and financial toil. The family went into "bunker mode" — they couldn't take field trips or volunteer at school because every available off-work hour went to doctor's appointments. They tried every discipline tactic, but Erynn's rages were getting more frightening. She would apologize afterward, but she could not control herself. During one fury, she kicked the closet door in her bedroom so hard she ripped it off its hinges.

Finally, after that day at Sam's Club, they agreed to admit Erynn to hospital for a few weeks. They went to visit every evening. For the first two weeks, the staff would have to pry Erynn away as they left. Each night, they drove home, convincing themselves that they were doing the right thing.

Teacup in a tempest

Mental illness is caused by a complex interplay of genetics, environment and triggers such as stress and abuse — causes that can take root long before the symptoms show. But the health-care system is not well co-ordinated to handle prevention and early intervention, even though the patients with the best recovery rates are the ones who get help early.

Diagnosing such children is even more complicated than for adults. Medical staff have limited knowledge and are reluctant to apply a label at a young age because of the pervasive stigma surrounding mental illness. As much as drugs are overprescribed, cognitive-behaviour therapy is underprescribed and effective alternative and complementary methods such as music therapy and art therapy are underused. Everyone is looking for a quick fix.

"Right now, we're offering a lot of treatment that isn't very effective. At the same time, there are very effective treatments that aren't available," says Charlotte Waddell, the Canada Research Chair in Children's Health Policy and co-founder of the Child Mental Health Research Centre at Simon Fraser University.

Worse yet, the children who can most benefit from early treatment — those with anxiety and depression — are often the least likely to get help. Instead, resources are focused on those with behavioural disorders that make them disruptive.

The effects are sad and, in the long term, costly. "If we wait until adulthood to treat these problems, it's like using a teacup to bail out the boat," Dr. Waddell says.

Many parents do not want to believe that their child is sick because they feel it's their fault, or else fear their children will be branded for life. Dr. Manion recalls the story of a boy who dialled a mental-health hotline; he had a gun in his hand and wanted to commit suicide — if only he could find some bullets.

"We contacted the parents, and they threatened to sue us. They said, 'You'll ruin his career by putting this in his medical file,' " Dr. Manion says.

He says parents should be no more reluctant to get their kids help for mental-health problems than they would for a broken arm or for asthma. But professional attitudes often don't help.

"If your child is asthmatic and goes to the ER 20 times a year, the staff is friendly," Dr. Manion says. "They recognize and care for you. If your child is chronically suicidal and you go 20 times a year to the ER, you see a lot of eye rolling and you get bumped to the bottom of the list."

Two-tier system

Toronto's Darlene Wierski-Devoe and her husband, Dave Devoe, believe that it was only their constant pressure on doctors and programs that got help early for their daughter, Sydney, who was diagnosed with anxiety disorder at the age of 3.

Her specific condition, social anxiety, is essentially an extreme, persistent and disabling form of shyness that leaves people dreading even the most mundane social interaction.

For years, Sydney spent a good part of her day crying inconsolably. Nothing her parents did could help her, and hugs seemed to make it only worse. On shopping trips, she would sob for hours at a time in her stroller. Later, at family gatherings, she would hide behind her parents and refuse to play with other children.

"It gets really frustrating," Mr. Devoe says. "You think, 'Dammit, I know my daughter is in there somewhere.' But you can't get her out."

At first, Sydney was suspected of having autism, but her parents kept pushing for a more thorough assessment. They were put on waiting lists and Ms. Wierski-Devoe would call nearly every week to check their standing. She spent long hours at clinics and tried to help Sydney at home.

"If I had a job," she says, "I imagine I would have been fired."

Mental health is decidedly a two-tier system: The luckiest families are those with the money to pay for private help, the savvy to navigate the appointments and waiting lists and the willpower not to back down. Many other families get lost, caught up in a confusing turf war between several different areas of government.

The health-care system, schools and youth courts are not set up to work together, although some new programs are trying to bridge that gap.

It is not unusual for families in crisis to have to deal with seven to 10 government department and social-service agencies while their child is struggling with mental illness. If they live in a small city or town, the situation is usually worse.

"We can't seem to get the right people in the right place at the right time to the right service," Dr. Davidson says. "If you have child who needs help, it's a complete mystery how to get them help, how to get them into the system. People who are beleaguered already don't need this grief."

The Devoes, however, were lucky. They could afford to live on Mr. Devoe's salary as a research analyst with the consulting firm Deloitte & Touche while Ms. Wierski-Devoe devoted herself to Sydney's cause. After 1 1/2 years of tests, surveys and appointments, a psychologist made the official diagnosis.

But now they had school to contend with. Anxious in class, Sydney started hiding in her cubby for days at a time, refusing to do her work or sing O Canada. Ms. Wierski-Devoe was called in daily for sessions with the teacher. Her mom's suggestion that they send the work home was brushed off.

"Within the first week, the teacher said, 'Sydney, if you don't start doing work, you are going to fail in Grade 1,' " says Ms. Wierski-Devoe. "As a parent, oh, what it didn't take for me to punch that teacher."

Andrea Boulden has struggled with a similar situation with her seven-year-old son, Liam, diagnosed with bipolar disorder and Tourette's syndrome — a severe condition that entails much more than the stereotypical outbursts of swearing.

Right now, Liam's schooling is falling apart: Without a trained teacher's aid to help guide his behaviour, he is punching and kicking the fellow students in his special-needs class, acting the bully against his own will.

He cries in the morning when he has to go to school. And he has started having anxious nightmares about his mother dying. At home, his older brother struggles to live with Liam's violent outbursts.

His parents spent two years seeing more than half-a-dozen doctors to get a clear diagnosis. Now in Grade 2, Liam has already attended six schools — when he is not getting the help he needs, his parents move him, hoping the next class will be better.

They have offered to pay for a worker themselves, but union rules don't allow that, so they hired a psychiatrist as a parent advocate to push for the funding from the Ministry of Education.

On Monday, a worker begins a two-week stint with Liam, but they do not how long that will last. They have no more options. "If he needs an education, there is no where else for him to go," Ms. Boulden says.

Finding somewhere else to go is exactly what Sydney Devoe's family did this summer: They moved to Milton, Ont., to try a new school. They had their first meeting with the principal and the counsellors, and, as Ms. Wierski-Devoe recalls, from the beginning everything was different.

"I was so used to school meetings being us against them," she says. But this time, "the principal wanted to hear from us what Sydney was all about. They understand that she doesn't do things to be belligerent. She does things because she is scared."

The school promised not to pressure Sydney and to allow her mom to walk her to class in the morning. On the first day, she wrote her name and coloured a sheet of paper. "That was more than she had done in the last eight months of the old school," Ms. Wierski-Devoe says.

But even when the system finally works well, they still see one key missing component — helping the family cope, including siblings who may feel left out and stressed by the situation.

Last week, Ms. Wierski-Devoe had to have a long conversation with Sydney's older brother, Ehren, after he told her he thought that "she loved Sydney more than him."

There are parenting classes to learn how to change your baby's diapers, Ms. Wierski-Devoe points out, but there are few classes to help parents with kids too anxious to visit their grandparents.

To bring parents together, earlier this year, she started blogging about her experience. She and Mr. Devoe now hope that their hard work has given Sydney a head start, at least.

"You have to go through all these hurdles. It's not easy, and you have to be persistent," Ms. Wierski-Devoe says.

"You know your own child," Mr. Devoe says. "Stick to your guns.

Here be dragons

Sitting on her bed, eager to show a stranger around her room, Erynn Quigley is explaining why she likes dragons. "I've always had a fascination with things that were misunderstood," she says sagely.

A shelf in the corner is crammed with books — every copy in the Secrets of Droon series, all the Harry Potters, and of course, several books on dragons. A sheet hangs from her closet door frame — after she kicked it in, her parents figured it was safer not to replace it.

She is a gregarious and chatty, volunteering her high score in a recent science test and, barely a breath later, her own assessment of her difficulties two years ago, when she was 10. "My medicine wigged out for a bit," she says matter-of-factly. "So Grade 5 was a pretty messed-up year."

Erynn stayed for a month at the Child and Parent Resource Centre, which is set up as a cluster of cottages for kids and teenagers to stay on a short-term basis.

Good behaviour earned her special snacks and longer access to video games. Any aggression landed her on her own in the "quiet room" — a large, windowless room under video surveillance where, when she calmed down, she occupied herself by peeling the paint off the walls.

Erynn was the youngest person there — the other kids were teenagers. She learned do her own laundry and dishes, and within a few weeks was rewarded by moving upstairs, away from the quiet room and the staff office. By the time she was ready to go home, she did not want to leave.

Then, that November, there was another hurdle: Her school refused to take her back, saying they were renovating. Again, Ms. Bishop went to work, contacting a principal she had once heard speak about mental illness. After observing Erynn, he agreed to give her a spot.

Now, two years later, she has her own small room at school to use as she needs it — "the Burrow," she calls it affectionately. Although she talks about not always feeling included by her peers, this fall she chose to go to school full-time and was elected fundraising chair of the student council.

"You feel like an outcast sometimes, because you're different than everyone else," she says, finishing a plate of fettuccine that night. It is soon time to take her pills; she is started to squirm, like someone with an itch. But at the dinner table, explaining the intricacies of Pokemon mythology and negotiating for her third slice of bread, she is an outgoing, engaging preteen.

On the wall in their kitchen, with typical Quigley humour, a sign reads: "Remember, as far as anyone knows, we're a nice, normal family."

Looking in on this particular night, no one would think otherwise.

André Picard is the public-health reporter and Erin Anderssen is a feature writer for The Globe and Mail.

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