Parenting a child with bipolar disorder

Keli Anderson’s son, James, was an intense baby: walking at nine months, leaping out of his crib by one, never napping. When Keli and her husband, Dave, asked their doctor if this was normal, he reassured them, insisting James was a healthy, active toddler.

But Keli knew something was wrong the day James, then two, started picking up toys and books and throwing them. Her new baby, Michelle, was in a swing in the living room. Concerned the baby would get caught in the crossfire, Keli put her in her bedroom and went back to calm her son. That’s when she noticed his pupils seemed darker. His eyes had changed and he was angry, out of control.

When he wouldn’t settle down, she took him out to the car and went back in to get Michelle. Driving had helped quiet James before. But when Keli got back to the car, James had ripped the rear-view mirror off the windshield.

“I was so scared, I had to call a friend to come and get the baby while I tried to deal with James,” recalls Keli. “After about an hour, he just passed out.”

The violence of James’s rage that day was a precursor of things to come. His outbursts would get worse, and the sweet toddler with big blue eyes would go on to cower in corners at preschool and refuse to leave his mother’s side at school. His behaviour — including what Keli perceived as a lack of the joy she saw in other kids — would send his parents on a frustrating search for help. Finally, at age 10, James would be diagnosed with bipolar disorder, a very unusual diagnosis for someone so young.

According to a 2008 Health Canada report, mental disorders affect 15 percent of Canadian children, or 1.2 million kids. But 80 percent of all psychiatric disorders emerge in adolescence, which is what made James’s case so different. And as his parents were to discover, only one in five children who need mental health services receive them.

After James started school, his problems began to escalate. As he began grade four, Keli had just been promoted in her full-time job to change-management coordinator at Vancity Savings Credit Union in Vancouver. James had to be dragged into school every morning by his father, literally kicking and screaming. Dave would leave after handing him over to the principal, who would restrain the boy as he cried, “Don’t leave me! Don’t leave me!”

Keli and Dave felt they were going against their instincts as parents, that they shouldn’t be leaving him at school like that. They knew he was different from other kids. But they weren’t getting answers from the dozens of doctors, educators, paediatricians and psychologists they had consulted over the years. There was a stage when Keli and Dave thought James had autism; another when they suspected food allergies. Of the experts they saw, most said James was fine, that he’d adjust. He didn’t. One teacher recommended James for the gifted program; another said he had “school phobia” and that Keli was to blame for being overprotective. In grade four, James was having “difficulties” on the playground and getting angry; he stopped paying attention in class and wasn’t completing his work. At home, he would get into a rage waiting for his mom to take her turn at a board game, or have a meltdown when asked to brush his teeth. He started to talk about “the things in the hall” — things he told his mom he saw at night when he was alone in his room. He was nine. For Keli and Dave, those had been nine years of not being able to have a normal life. The few times they hired a babysitter, they would inevitably get a call: “James is under the dresser and he won’t come out. He looks desperate. Please come home.” But Keli stresses it was cyclical — there were times of happiness. And through it all, she never lost hope.

Today, sitting on the couch in her North Vancouver home, Keli is all poise, in black heels, black slacks and a white dress shirt. But as she describes the isolation she felt in raising James, her eyes water and she sits up, tense. “I never got to be a regular mom.” With her son’s anguish over being left at school, she recalls, “I never got to feel what the first day of school felt like, until James was in grade 10.”

“But if our life was hell,” she says, leaning forward, “his life was a bigger hell. And we needed to find a way to make it stop.”

Finally, after a house-trashing rage at age 10, James was referred to the psychiatric assessment clinic at BC Children’s Hospital. But the wait for an appointment was an agonizing nine months; meanwhile, he was sent to do a psychological education test. He had a fit in the psychologist’s office and smashed a valuable painting. The psychologist told Keli she had never seen such troubling behaviour. “She said James was severely emotionally disturbed, that we needed serious help. She was the first person who believed me.”

Before Keli had a chance to get help, even if she could have found it, James had another episode. He started throwing furniture down the stairs, including a couch, which he literally picked up and threw. A plate hit his sister in the eyebrow, and Dave had to take her to the hospital while Keli tried to control James. But soon, it was clear James was going to hurt himself. She called 911.

When the police arrived, they didn’t believe the furniture blocking the stairs was put there by a 10-year-old. Then, she pointed to James in the corner, who was rocking and saying, “It’s over now, Mommy. It’s over.”

A few days later at school, James threw a desk at the principal and Keli thought: “Maybe now they’ll finally help us.” Instead, workers from the BC Ministry of Children and Family threatened to take Michelle away; they said they weren’t sure Keli and Dave could protect her. “That’s when I went from desperate,” says Keli, “to extremely pissed off. No one was helping us. No one was supporting us as a family. And we were exhausted.”

She had searched so hard for help. “Instead of help, I was blamed, even though we’d tried everything, even electrode testing on his head. We’d taken so much money from our RRSPs for his testing, and none had revealed anything conclusive. We were running out of options.”

The crisis finally came when an antidepressant prescription backfired and caused James to go manic, locking his babysitter out of the house. At the urgent assessment clinic at BC Children’s Hospital, Keli and Dave finally learned what was wrong with their son. Keli also learned for the first time that one of her sisters had experienced similar problems. Another sister came to the clinic and revealed this history — which doubly convinced the doctor of the diagnosis: bipolar disorder.

“I remember asking the doctor if James could die,” recalls Keli. “And he said the depression is very serious.” James was put on lithium and six weeks later, his rages stopped. “It was such a bittersweet moment,” says Keli. “It just confirmed to us what we were dealing with.” But the more Keli read about bipolar disorder, the more upset she became. James would never get better; 10 to 20 percent of adults with bipolar disorder commit suicide. But she quickly decided that didn’t have to be her son’s future. She found famous people with bipolar who did OK. Not many, but enough to keep her hopeful. James didn’t go into grade six, even on lithium. He still couldn’t handle being away from his parents. Keli was home-schooling him and working full-time, relying on babysitters, neighbours and her mother to fill in the gaps. And then, James was admitted to the in-patient assessment clinic at BC Children’s Hospital, where he’d been on the wait-list for almost a year. But it meant living at the hospital for seven weeks. It was the first time James would be away from his parents, and they knew how hard the separation was going to be for him. But they clung to the hope that the clinic would help James to be happy and to enjoy things like other kids did — school, birthday parties, sleeping in his own room. So, despite their worries, they left him there. Looking back now, Keli sees that she was too burnt out to trust her instincts.

After the first night, when Keli called to see how James was doing, the staff told her he’d thrown up all night and wouldn’t eat his breakfast. They said if he didn’t follow the routines, she wouldn’t be allowed to visit. She went anyway. That night, and every night, as she left, she circled the car around the hospital twice, as James had asked, and she watched him in the window, waving frantically, his face smushed up against the glass, crying.

The seven-week program was a nightmare for James. (Years later, Keli says, “he asked me what I was thinking, putting him in a hospital away from us, when that was his biggest fear. I told him we didn’t know how else to help him.”) But it was the beginning of a new life for Keli. She was incensed over what her son endured: being told his family couldn’t visit if he didn’t stop crying; being forced to keep his door closed despite his fear of the dark; being discharged with no follow-up. Keli wrote a letter to every news outlet in Vancouver.

It landed Keli on the supper-hour newscast. “How can a child with a life-threatening illness be discharged from the best hospital in the province with nothing?” she asked the station’s viewers. “It’s like diagnosing a kid with cancer and sending him home with chemo.”

Her message resonated with many viewers, but particularly with Donna Murphy, who contacted Keli with her story of raising a son with mental health issues, who had recently committed suicide. The two women quickly became friends and decided to start a non-profit, called The F.O.R.C.E. (Families Organized for Recognition and Care Equality), to help families like theirs.

That was 2000. For the first few years, Keli, who had quit her job at the bank before James was admitted to hospital, lived off her RRSPs. Dave was working as an electronics technician, and Keli spent all her spare time lobbying the government, taking ferries to Victoria to meet with government ministers to convince them all children have a right to care, and to educate officials about the alarming number of Canadian kids with mental health problems. Often, she didn’t have enough money for breakfast on the ferry.

The F.O.R.C.E.’s first success was getting BC to establish a Child and Youth Mental Health Plan in 2003. The plan, the first in Canada, sets out targets for investigating treatments and providing training for mental health clinicians, and for prevention programs like Friends for Life, which helps children in grades four and five with anxiety prevention. The plan mandates funding for more clinicians in communities across the province, and for agencies like The F.O.R.C.E. to provide peer support and education to parents.

This annual funding meant families in BC now had a place to go for help. It also meant Keli could start to collect a salary again. Today she runs the society full-time from her home, hiring parents who, like her, couldn’t keep their jobs and care for their children. She’s gone from a staff of two to 14, who mentor, support and educate thousands of parents across the province. Their phones are always ringing. Kellie Leitch is the former federal Advisor on Healthy Children and Youth and author of the 2008 report Reaching for the Top, which identifies children’s mental health care as an urgent concern. “What Keli has done is figure out how to get parents involved, and drive real, meaningful change in a positive way,” says Leitch. She says better access to mental health care is coming, and credits Keli with helping to make this a reality — both through her work with The F.O.R.C.E. and as a member since its inception in 2007 of the Child and Youth Advisory Committee of the Mental Health Commission of Canada. “Not every parent can do that,” Leitch says. What’s more astonishing is that Keli did much of her work from the waiting room of the day program where James spent most of his high school years. She would sit while he worked with his therapist, until he was comfortable enough to let her go across the street for coffee. Those short breaks got longer, until she could leave him there for most of the day.

Today James is 20 and lives more in wellness than in illness. He has a job working alongside his father in electronics. He has friends, a girlfriend, an in-line hockey team. Medication keeps his rages at bay; he hasn’t had an episode for almost two years.

What drives Keli today is her sense of justice. “Leaving the hospital with James that day, I really thought: What about all the other families who aren’t strong enough to get through this? It’s so isolated and traumatic, often families just survive. Well, I’m here to tell them that we’ve come out the other side, and we never gave up. We never believed James wouldn’t have a good life.”

Through it all, Keli sees her son’s strength. “He’s a remarkable boy. Can you imagine what he’s gone through?” James will always have emotional demons to battle. But his mother, father and sister will be there by his side.

Mental health resources for parents

• bckidsmentalhealth.org The F.O.R.C.E. Society for Kids’ Mental Health provides support, resources, advocacy.
• ementalhealth.ca A province-by-province listing of local mental health services, plus national resources.