Creating programs for kids with mentally ill parents
TheStar.com – news/insight
October 14, 2012. Joanna Smith, Ottawa Bureau
Christine Cooper recalls the little boy who needed a break, and access to a telephone.
It was time for his mother to take her next dose of risperidone, a drug commonly prescribed to treat the symptoms of bipolar disorder.
“I remember being absolutely stupefied by the fact that I was sitting with a 10-year-old lending him my cellphone so he could phone his mother to remind her to take her medication,” Cooper says of the boy in the support group she was leading for children whose parents or siblings were struggling with mental illness and, in many cases, addiction.
That was five years ago, and on that day Cooper, executive director of the Toronto community organization Family Association for Mental Health Everywhere (FAME), was filling in for a colleague.
“I just made the hard and fast commitment that come hell or high water, I was going to make this program grow,” she says.
It has been a tough journey, with Cooper constantly having to look for financing, but the program called fameKids is now on track to serve nearly 500 children between the ages of 7 and 12 at community agencies in Toronto and Peel Region.
There are similar programs, spearheaded by similarly dedicated individuals, here and there across Canada, aimed at helping the children of parents with mental illness.
There is growing awareness about the impact of mental illness — a report released last week suggested the burden of mental illness and addictions in Ontario is greater than that of all cancers and infectious diseases put together.
But the stigma that still surrounds the issue has families reporting they receive less care and support than friends and neighbours with physical ailments.
The lack of a national or provincial strategy — never mind stable funding —for helping children of mentally ill parents means community organizations nationwide are collaborating and cobbling together scarce mental-health resources to support them.
Rebecca Heinisch was one of these kids.
Her mother suffered from chronic and severe depression, resulting in frequent hospitalizations, from the time Heinisch was a baby.
“Nobody really explained anything,” Heinisch says from her home in Trois- Rivières, Que. “It was just there. My mom would leave for the hospital and there would be no explanations.
“It really took a long time to understand the impacts for myself and how that influenced my behaviours, all the different choices I was making and made.”
Heinisch grew up to be an elementary school teacher and started noticing some of the same characteristics in her students, “crying out by their behaviours” long before she was able to determine their suffering was rooted in having parents with mental illness.
She took time off work to write a story book called Anna and the Sea, originally published, in French, in 2004 and meant to educate children about mental illness and drive home the message that it’s not their fault.
And three years ago she launched a workshop for children on the same theme that has since been replicated across Quebec.
“Children know with their eyes, their feelings,” says Heinisch, “but they don’t understand, so they need to have the knowledge to decode what’s happening.”
One of the most popular activities at fameKids is the “brain train,” which involves watching a toy locomotive derail as group facilitators remove pieces of the track.
It is a way to way to illustrate how the chemical imbalance at the root of mental illness distorts moods and creates cognitive dissonance, says Cooper, who continues to be executive director of FAME.
“It just makes it a little simpler for them to reconcile what is going on,” says Cooper of children learning that frightening parental behaviours such as yelling or believing food has been poisoned is the result of their disorder and not something Mom or Dad want to do. “Often it seems to help them not feel so angry.”
“Everybody wants what’s best for their kids,” says Gloria Chaim, deputy clinical director for the child youth and family program at CAMH. “They sometimes are just not able to, for many reasons, do what might work best.”
The program is run out of local community organizations, which host both parents and children for a family dinner once a week before they divide them into separate groups: the children learn coping strategies while the parents learn parenting skills. Then they come back together to put what they learned into practice.
Chaim says it would be helpful if programs like Strengthening Families for the Future received “core funding” from governments rather than having to rely on already stretched institutional resources.
Change could be on the horizon.
The Ontario government launched its provincial mental health strategy in June 2011 and is 16 months into a three-year plan to improve mental health services for children and youth. The 2011 provincial budget included $257 million over three years for child and youth mental health.
The Ontario Ministry of Children and Youth Services, which takes the lead on mental health services for young people in the province, says it also currently funds a variety of programs and services, including family counselling.
Brenda Gladstone, a researcher with the Community Health Systems Resource Group at Toronto’s Hospital for Sick Children, says she would welcome a co-ordinated approach that would allow those providing services to children of parents with mental illness to learn from each other and figure out what works best.
She thinks educational and support groups for children of parents with mental illness are important but should also be grounded in research that takes into account what kids and teens say they want and need.
For example, Gladstone says that while reading the literature on children of parents with mental illness, she was left with the impression that “kids are isolated, alone (and) stigmatized.” But she came away with a more nuanced understanding after observing a support group for these children for her doctoral thesis.
She says some of them expressed excitement about going back to their everyday lives and friends when the session was over, and some also resisted advice from group facilitators that they should confide only in adults they trusted, and not their friends, about trouble at home.
“It struck me that because of assumptions we might be making about their lives and social networks, or the lack thereof, we weren’t really thinking about that part of their life,” says Gladstone.
In Australia, the federal government supports a national initiative for the children of parents with mental illness. It includes training and guidelines for health and social workers who come into contact with them.
There has been recent movement toward a more national approach in Canada, at least when it comes to research in this area.
There was much excitement around a joint academic conference on family mental health, children of parents with mental illness and “young carers” —children who spend some of their time looking after disabled or ailing family members — in Vancouver in May. A smaller group of researchers focusing on parental mental health met in Winnipeg to brainstorm what should come next.
Ian Manion, a clinical psychologist and executive director of the Ontario Centre of Excellence for Child and Youth Mental Health in Ottawa, is part of a team working to develop a national policy for school-based mental-health projects.
“When you are looking at children with parents with mental illness, it’s really hard to access those through the school system,” says Manion, explaining that concerns about confidentiality and stigma are obstacles.
On the other hand, Manion says, promoting mental health in a more general manner can be a way to help less directly, especially when schools work to reduce the stigma surrounding mental illness.
There are also those who view children of parents with mental illness through the wider lens of their role as caregivers.
The young carers movement began in the United Kingdom in the 1990s, when children demanded their rights be enshrined alongside those of other caregivers in legislation being drafted at the time.
Like adults who care for aging parents or sick spouses, many children are saddled with the responsibilities of caring for family members.
In the U.K. now, many young carers receive identification cards that give them the right to get medical information about their parents that they would otherwise be deemed too young to receive, a formal recognition that many of them are helping manage mom’s or dad’s treatment regimen.
One day in mid-August, a group of young carers from different family circumstances, several of them caring for siblings with autism and other disabilities, gathered for their first day atCamp Zagehdowin, a week-long day camp organized by Hospice Toronto.
Natalie Wilson, whose sister lives with schizophrenia, says many of the children and teens she works with as co-ordinator of the Young Carers Program at Hospice Toronto struggle to balance their caregiving roles along with homework, friendships and just being kid.
They often struggle in silence.
“A lot of kids say they don’t want to tell their parents because they don’t want to stress them out more,” says Wilson.
So, they come to camp to get a bit of a break, make superhero capes, learn about how the body works, giggle through three-legged races and figure out how to manage their feelings in a healthy way.
Gladstone, the researcher at Sick Kids, says that a lot of the literature on children of parents with mental illness describes, in a negative way, how children take on the role of the parent — a concept known as “role-reversal” or “parentification.”
But children do not always view this as a negative, says Gladstone, and it might be more important to figure out how to support them as young carers, as is done across the pond, than try and stop it from happening.
“We have to get past that ideological impasse,” she says, “that (a child) is not supposed to do anything.”
To read the first two stories in this series, go to thestar.com.
This project was funded by a Canadian Institutes for Health Research (CIHR) Journalism Award.
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