Canadian mother strives to reduce stigma about childhood mental health issues

From Sudbury Northern Life in Canada:

These days, 29-year-old Leah Hess has a part-time filing job in an office, spends her spare time taking aboriginal drumming lessons, and, according to her mother, Susan, is “an amazing young woman with a great sense of humour.”

But raising Leah, a developmentally delayed young woman who has also suffered from chronic depression and an anxiety disorder since childhood, was a long and difficult process, Susan said. (The two are pictured.)

“It was pretty horrid when she was growing up,” said the Windsor woman, who is a long-time advocate for children with mental illness.

Susan is scheduled to speak about her experiences with Leah in Sudbury Feb. 9 at 7 p.m. at Gatchell School (located at 31 Tuddenham St.). The lecture was organized by the Rainbow District School Board's parent involvement committee.

Susan said she first noticed something different about Leah when the girl was about three years old. Leah, the fourth of five children, wasn't meeting the same developmental milestones as her brothers and sisters. She brought Leah to a doctor, where she was tested for physical and mental delays.

Then, when Leah was five years old, her father committed suicide. Susan said she doesn't believe Leah's father's death had anything to do with her subsequent mental health problems because she was too young, especially with her developmental delay, to really understand what had happened.

Susan said the girl's behaviour was always characterized by irrational fears. She was terrified to go into the basement or go across the street to visit neighbours she knew well.

When there was an upcoming field trip, she'd be “up for two or three weeks before the field trips, and she'd imagine all sorts of horrid things like the bus crashing, and she wouldn't want to go.”

By the time Leah was eight or nine, she told her mother that she was hearing voices telling her to kill herself.

“I remember one time being on the phone in the family room, and I could hear her saying 'Go away, get away, get away.' When I excused myself from the telephone and I went in (to the other room), she was standing in the corner, backing away, batting things away,” Susan said.

“I said 'What's wrong?' She said 'I need them to get away. I need them to stop talking to me.' I said 'Who?' She said 'The voices that are telling me to kill myself.' I said 'Where are they?' She said 'They're right here.' There was nothing there. She was standing, facing the corner.”

Getting help for Leah was difficult, her mother said.

She visited one psychiatrist with a suicide note her then 10-year-old daughter had written, and the psychiatrist told her she thought Leah had been sexually abused, while Susan knew that wasn't the case.

“It was a real fight as a parent. What I did was I gathered champions around me, who did believe what I was saying. There was a school social worker who said to me 'Don't let people tell you she has a behaviour problem. Her behaviour is connected to what is wrong inside her, so keep fighting.'”

The stigma of mental illness was extremely isolating for the family, Susan said. She and her other children were afraid to have people over because Leah was so unpredictable. Leah herself had no friends.

Finally, when Leah was 14 years old, she was diagnosed with chronic depression and an anxiety disorder, “which they figure she was really born with,” Susan said, and received help at a children's mental health agency in Windsor.

While things have gotten a lot better for the young woman over the years, she still lives with her mother because she is afraid to be alone at night, and occasionally talks about committing suicide.

“Sometimes she'll say to me, 'I'm just going to go and kill myself.' So we'll sit and talk about that. I'll ask her 'What is your plan?' She doesn't have a plan. 'Where are you going to do it?' She doesn't know where,” Susan said.

“But if you talk to her and say 'If you did take your life, you wouldn't be able to (go to your brother's wedding), you wouldn't be able to go with (your worker to visit her family), and you wouldn't be able to play with (your worker's) little baby. Every time she says it, I take it seriously, but we sit down and talk about it. But she's not saying it like she said it before.”

For many years, Susan has been trying to raise awareness of children's mental health issues and secure more government funding to address the issue.

She has done everything from giving lectures about the topic across the country, to sitting on numerous committees.

Until recently, she was a member of the Board of Children’s Mental Health Ontario. She was also a member of the Consumer Advocate Network and the Advisory Council, standing committees of the Centre of Excellence for Child and Youth Mental Health.
She continues to serve on the Family Care Advisory Committee for the Mental Health Commission of Canada.

In 2003, she also participated in a project called the Quilt of Honour, which features the stories of nine young people with mental illness, including Leah, on a quilt.

Four of the young people featured on the quilt had already committed suicide at the time it was made, and another young man featured on the quilt committed suicide last year at the age of 20, she said.

Susan said when she speaks to the parents of other young people with mental illness, she gives them several pieces of advice.

She tells them not to give up, and continue to try to find their child the help they need. She tells them to nurture a relationship with the child's teacher and other supportive professionals so they can work together to help the child.

Last of all, she tells them to “love your child for who they are, not for what you want them to be.”