A mother's perspective
Reprinted from "Young People: Transitions" issue of Visions Journal, 2015, 11 (2), pp. 20-23
At age three my son Tyler started to have obsessive-compulsive disorder (OCD) tendencies around cleaning and organizing his toys. By 15, he had progressed to symptoms such as mood fluctuations, hearing voices and having suicidal thoughts.
When Tyler was 15, he started seeing a family doctor in our area who had more experience with mental health than our regular family doctor had. This doctor referred us to the Ministry for Children and Family Development (MCFD) for a psychological evaluation. Tyler also had cognitive-behavioural therapy sessions through MCFD.
Additionally, Tyler and I tried a number of things on our own to avoid prescription drugs. Chiefly, we rated how he felt, level of anxiety and so on, charting that against what he ate, how and when he slept, and what exercise he’d gotten. We also tracked the effectiveness of nutritional supplements and herbs.
After a couple of years of this, Tyler chose to try medication for his symptoms. It was too hard for him to endure the thoughts and voices in his head any longer.
Starting on meds was a game changer for both Tyler and for me. Whatever medication the GP first prescribed worsened symptoms, and Tyler ended up in the adult psychiatric unit of the Trail regional hospital for a week. Unable to handle returning to school to finish grade 11, he was admitted to the Adolescent Psychiatric Unit (APU) in Kelowna, a four-hour drive away. The low-dose antipsychotic prescribed in the APU helped Tyler gain some normality, and he was able to return to school for grade 12 and graduate with his classmates.
Once the medication started taking effect, however, my son changed. He was still gentle and kind, still had a wonderful smile, but he gained weight, was tired even after sleeping long hours and his movements were lethargic. He didn’t show great excitement or joy; instead had a more unemotional, flat demeanour. Mentally, he struggled to follow instructions, converse and solve problems. Things he’d previously known how to do had to be relearned.
As a parent, I’ve had to grieve lost hopes and dreams for the son I raised. I had to honour the grief to move past it and be able to support my son on his new journey.
Transitioning on the heels of high school grad
Graduation year is a bittersweet time in most teenagers’ lives. It involves parties with friends, but also stress about what comes next. It’s even scarier when you are dealing with mental health issues.
In Tyler’s last year of high school, our mental health appointments consisted of:
15- to 20-minute appointments once a month with an MCFD psychiatrist in Castlegar, a half-hour drive away
two appointments each month with an MCFD worker in Nelson (down from three to four in previous years)
monthly visits to Tyler’s family doctor in Nelson (down from weekly visits earlier on)
I had allowed my older son Brandon to enjoy his post-grad summer without the pressure of working, and Tyler wanted to do this too. In Tyler’s case, it meant we ‘took a vacation’ from our appointments. I think both Tyler and wanted a break from dealing head-on with things.
When fall came, Tyler began working at a full-time job. This made it difficult for him to attend the MCFD appointments we were supposed to make for transitioning him into the adult mental health system. Tyler was now 18 and would be turning 19 in November—would be aged out of the youth health care programs. But we didn’t use that MCFD gateway, where his case worker would help him shift to adult services.
Tyler would’ve liked to continue with his MCFD case worker, as this relationship was developed. Adult Mental Health seemed so daunting: they wanted him to make his own appointments, and it meant getting used to new care providers and telling his story again and again.
One change that did happen was once again seeing his family doctor to get his prescriptions renewed, as he was no longer eligible to see the MCFD psychiatrist.
In October 2013, Tyler and I joined the Doctors of BC initiative, the Child and Youth Mental Health and Substance Use Collaborative. This was an opportunity for Tyler and me to help change things for parents and youth going through the various systems. But just because we were part of the task force, it didn’t mean we knew what was out there for Tyler as an adult.
Breaking down a hospital stay into a learning op
When he was 20, Tyler had a breakdown. This was his first time going into hospital as a legal adult.
My older son Brandon drove Tyler to the hospital in Trail, an hour from Nelson. I was already in Trail as I’d just arrived back from vacationing with my sister, who lived there. My sons phoned me when they arrived at the hospital, and I told them I’d be there—later.
As a parent, you do your best to prepare your children for what comes next. I knew I had to use this hospital stay as a learning opportunity for Tyler—he really needed to learn how to advocate for himself, and I knew he was safe there from harming himself. This was also a learning experience for my older son, as he too was scared and uncertain what to expect. But they handled the first visit with the doctor together.
Tyler was comforted that his brother was with him, but he wanted me there. Before this, I had been with Tyler at all his medical appointments, hospital stays and task force meetings, advocating on his behalf, though I also encouraged him to ask questions. But now that he was an adult, I had to learn to trust that he could do this on his own. This was scary because he wasn’t at his peak mentally.
When I arrived at the hospital, Tyler, Brandon and I had another discussion with the attending doctor, and it was decided Tyler would be admitted.
I visited him the next day, and we talked about the things he’d need to ask the doctor—all questions I’d have asked on his behalf when he was younger. For instance: What can he do to manage his symptoms? What are the effects of the medication and how often will his blood levels need to be monitored?
Then I went back to Nelson. It was very difficult for me to leave Tyler on his own. I worried whether I was being supportive enough and really just wanted to be there with him, asking questions and demanding more be done for him. And when Tyler was younger, I made sure he had lots of family visitors, was taken on outings and got anything he wanted—food and cigarettes, for example. But now he had to learn to take care of himself.
I made a few trips down, but Tyler was mostly at the helm with his experience. He learned, for example, that as an adult he could ask for a pass to go outside to smoke. And rather than me organizing visitors, I encouraged him to contact his cousins about coming to visit.
Adult mental health by trial and error
Tyler stayed in hospital less than a week. His discharge plan was for him to arrange to see the psychiatrist at Adult Mental Health in Nelson. At our first appointment, the psychiatrist was a little shocked that Tyler had asked me to come with him—Tyler wanted me at almost every appointment we had with this guy. They were usually short visits focusing on medication. At times I’d make an excuse to Tyler that I couldn’t attend, so he’d go without me.
Tyler was required to call in on certain days to book his appointment directly with the doctor. I put the onus on Tyler to make his appointments, but he had a lingering reluctance, and I’d have to gently remind him.
At a task force meeting, we found out that Tyler could see a counsellor at Adult Mental Health as well as the psychiatrist—something we might have found out if we’d completed the transition with MCFD. Tyler only accessed this service a few times. He went out of town, and when he returned, the counsellor he’d seen had been replaced.
A challenge of living in a small town is there are only a few clinicians and psychiatrists in the Mental Health office. If you don’t build a measure of trust with them, it’s hard to want to keep going back. And whether the counsellor is a good or bad fit, there seems to be frequent turnover in counselling staff, which can be unsettling. So, you end up only accessing them when in crisis. We did try some local private counselling services, but the cost was prohibitive.
As for adult support groups, there are only a few, which we haven’t accessed. They often run just once per month, and we keep forgetting which day—symptomatic of fatigue around making and keeping up with appointments!
There have been times when Tyler was well enough to work and earn some money, but when he wasn’t able to, his anxiety increased around not having money. Somewhere, sometime in the past year, someone told us he would probably be eligible for a disability allowance when he wasn’t able to work. Tyler and I decided disability income wasn’t a sustainable future but was okay to use when he wasn’t able to work, and so he applied. It would have been helpful to know this information earlier, but I’m not sure how one would’ve found out about it.
Advocating supported transition at an older age
Throughout this journey, I’ve learned to ask questions and to seek alternative approaches. I thought that when my son became a legal adult, he’d take on these tasks—we expect young people at 19 to have these skills.
I can say that at 19 my son was ready to try certain things—holding a job, maintaining his finances and travelling—but he wasn’t ready to navigate the mental health system on his own. Even now that he’s almost 22, he still needs an advocate. I am his ‘case manager,’ because there are no case managers in the adult mental health system.
This transition would be easier if the transition period started later, at least at age 21. As it is, the transition to adult mental health comes when young people are already dealing with the often intense transition out of high school. Wouldn’t it be better not to disrupt their mental health support at this time? To be able to carry on with the same MCFD mental health worker and psychiatrist that they have already built a relationship with?
Also, for those of us with extended health benefits, we could provide health care support for our children as dependants for a longer period of time.
Financial support for young people with mental illness transitioning to adulthood could be more flexible, to allow more options for them in their exploration of the world. As an adult on disability assistance, if Tyler leaves the country for more then a few days, he loses his income assistance and prescriptions coverage. Any other Canadian can go out of the country for six months and not lose medical coverage.
Becoming a fully functioning adult doesn’t happen magically on a 19th birthday. Tyler and I continue to try alternative ways for him to live that focus on learning what’s good for his well-being. He’s now taking charge of choosing healthier behaviours such as adequate sleep, balanced diet and practising cognitive-behavioural techniques. He’s also a Youth in Residence with The FORCE, providing peer support to other young people struggling with mental health issues. Tyler is taking steps toward becoming the man he wants to be.
About the author
Monique, a proud parent to sons Brandon, 24, and Tyler, 21, raised her family as a single parent in Nelson, BC. Collectively, Monique and her sons have volunteered with Special Olympics, school and sport activities, and most recently with the Child and Youth Mental Health and Substance Use Collaborative