Getting Their Lives Back

A mental health journey

When Mark was young, he was a happy and energetic kid. At about age 4 his demeanor began to shift to “sullen and bleak” as his father Steve describes.

When Mark was 7 years old, Steve and his wife Delila took him to a psychiatrist to address some of the behavioural issues they were noticing. They did so again at age 9 and then did family counselling at age 11 or 12.  Once happy go lucky, cooperative and gentle, Mark started to become difficult and would lash out at his parents and those around him. As he got older, Mark started having trouble in school.  In grade 10 he was diagnosed as “gifted learning disabled” and eventually dropped out at the end of the 10th grade with only a grade 9 education.  He self-medicated with drugs and alcohol and struggled with anger management issues resulting in a number of holes in their walls at home. “It got to the point where my wife and I would just sit and stare at each other, waiting for the next shoe to drop”, says Steve.

At age 30, Mark was diagnosed with schizophrenia, a disease described by the Canadian Mental Health Association as a “complex biochemical brain disorder affects a person’s ability to determine what is reality and what is not.” People suffering with this illness are affected by “delusions (fixed false beliefs that can be terrifying to the person experiencing them), hallucinations (sensory experiences, such as hearing voices talking about them when there is no one there), social withdrawal and disturbed thinking” (Canadian Mental Health Association 2018).

When Mark was 26, Steve and Delila were still struggling and they went to a counsellor for support who referred them to a parent support group in Guelph called the Association of Parent Support Groups in Ontario (APSGO). There they met other parents dealing with the same kinds of issues, they felt accepted vs. judged. They attended every Monday night and were coached on how to develop a different kind of relationship with their son, one that worked for both of them. Featured in the May 2017 Waterloo Record, Steve said “they helped us get our life back”.

Since then, Steve and Delila have started coaching other parents on how to “love the child you have vs. the child you thought you would have”.  In September 2013 Steve established the KW Chapter of APSGO.  They teach acceptance and coach parents how to provide a nurturing and respectful environment for their children with mental health and other issues. “My son has a really great heart. He would give someone the shirt of his back if they needed it. He once gave his socks to another kid on the street”.

In January 2016 Steve joined the FACE (Families for Awareness, Change and Education) committee for the mental health unit at Grand River Hospital.  Steve also recently joined the Patient and Family Advisory Committee (PFAC) at the Waterloo Wellington Local Health Integration Network (WWLHIN) where he hopes to help shape the health care system to better mental health supports for people in our community. He wants everyone in our region to know that it is “okay to talk about this stuff. It shouldn’t be kept behind closed doors for fear of how we may be judged”.  

Steve says “wouldn’t it be great if emergency room medical staff thanked someone with a mental health or addiction issue for trusting them enough to come in and ask for help”?  This instead of telling them that “they are only there for the bed and to go somewhere else”.  “The outcome might be the same, but at least the patient feels that there might be hope” he says.  This is part of Steve’s vision for the future.

Now that Mark is taking his medications and his parents have the skills they need to best support him, Steve reports that they have a very good relationship. Steve’s lasting message to parents and families dealing with similar issues is to “determine whether your approach is helping or hindering you having a better relationship with your child and peace in your home”. “Reaching out to them vs tough love will always result in a more positive, healthy relationship”.

Steve is thrilled to be a part of the WWLHIN PFAC and is enjoying being on the committee to help rewrite the Declaration of Patient Values, a guide that will help health care professionals better understand what their patients expect and need from them.