I searched for families like mine – and if possible, hope. They were here all along

By Ester Eisen

Stigma leads me to write this under a pseudonym. Why?  Because my child is kind, caring, generous and resilient, among many other great qualities. And they also have mental health issues that have caused them to behave violently. Fortunately, there’s been some progress dispelling the myth that everyone with mental health issues is violent.  But where does that leave people whose mental health issues may include violence?

Recently I took MHCC’s training on Mental Health First Aid (MHFA).  MHFA explains that stigma is the top barrier to support: “Unlike with a physical injury, with a mental health or substance use problem people are less likely to help others or to seek help themselves.” (MHFA, Module 1, Topic 3, Introduction).  

And stigma can be a significant barrier even for those who do seek help. I understood the importance of early intervention, but few professionals created space to constructively discuss my family’s situation or gain hope for recovery. Agencies were not able to connect me to other parents who also experienced high risk violence. When I attended parent groups, violence was not discussed. So early in 2018, I started my own research.

I hoped to find a family like mine, for whom things had improved. I understood that did not necessarily mean our situation would also improve, but I wanted to tell my child it had been possible for others. 

I was sure we could not be the only ones, but only found websites that stereotyped my child in all the worst ways. Then one night in August 2018, I desperately googled until dawn. And finally in the UK, found parents, professionals and academics with knowledge and empathy. Their research validated our reality in multiple ways.  Finding people who responded with information, resources and kindness was transformative – and eventually opened a dialogue in Canada.

Hoping to help other families as well as my own, I shared these international resources with agencies and therapists. A few were receptive. Adopt4Life was supportive, and one staff person suggested a useful course. But most professionals did not engage. As they were the source of much of the stigma, this was disheartening. 

Encouraged by a friend, I submitted a project to MHCC’s  SPARK Knowledge Translation  Program (SPARK) and was accepted in December 2018.  My goal was to bring the international research to Canada. Since I was an individual applicant without funding (vs. taking the program with funding through my workplace), my project depended on low-cost tools such as teleconference technology and electronic distribution of information.

SPARK energised me, as did MHCC mentor, Kam Tello. Several MHCC staff told me that they were glad to see a project on this topic. This encouragement sustained me when I went home.  Kam continued coaching me to construct a plan and she kept up my spirits when there was seemingly no progress. And the work gave meaning to my home situation, helping me through difficult moments.

In July 2019, I persuaded Adopt4Life to host webinars with my contacts: the first with Professor Julie Selwyn; the second with Helen Bonnick and Al Coates. These 3 busy individuals volunteered their time to share their knowledge with Canada, and I am forever grateful. Within months of their original release in 2020, the webinars had over 1,000 views. Parents watched the webinars and felt less isolated while professionals gained awareness of the issue and learned that in other countries it was openly discussed. Canadian conversations continue, involving academics, agencies, and government. 

And my family? During the pandemic, families like mine suffered acutely, in parallel to those experiencing other family violence. In January 2022, I enrolled in Family Connections (FC), offered in Canada by the Sashbear Foundation. FC is an international dialectical behaviour therapy (DBT)-based skills program for families of people with emotion dysregulation. I’d known of this free program for years. But I had not heard it supported families even where the emotional dysregulation leads to behavioural dysregulation such as violence or aggression.

In content and delivery, FC differed from parent DBT, which had not helped my family. FC families experience a variety of mental health issues, and these issues can include violence. The facilitators are parent volunteers, often with experiences very similar to mine. Some of their children are now thriving – the families credit FC. Others still struggle, but the parents are now in a better place, and therefore better placed to support their children. My family is now in the second group. Lately, it seems like we may even be moving toward the first group.

Originally, I searched for families like mine, and if possible, hope. They were here all along – right here in Canada – but stigma stifles conversation, even hopeful conversation.  

MHFA is all about conversation, including listening and communicating nonjudgmentally. My SPARK goal stated, “By selecting this application, the Mental Health Commission of Canada will provide a platform through which the international research can gain recognition, and dialogue can begin.” Since taking the MHFA training, I’ve given more thought to the dialogue part of that platform. With less stigma and more dialogue, years ago I might have heard that FC could help us, and enrolled and benefited sooner.  If – with appropriate privacy safeguards – we speak more openly, families can share what’s helped them.  Finally, I’m able to tell my child that I know families who’ve been through what we have and are now doing well. So now for me, dialogue is not only about awareness, but also about hope. Thanks to MHCC, and to SPARK’s impetus, mentorship, and endorsement, this dialogue has started in Canada.