Part One

Bell’s Let’s Talk Day was last month and I have to admit that it burns a bit to know that since its introduction in 2010, it doesn’t feel like much has changed in terms of the services and supports we can access for mental health in Ontario, Canada. We do a lot of talking (and no – I don’t want to use this forum as a place to discuss the hypocrisy of Bell Media hosting this initiative), but all the awareness that has been raised in mental health hasn’t really done much to transition to how people can access the care they need to treat their mental health and illnesses.

The world looks to Canada for its incredible healthcare and we brag about what we’ve got. But until you need it, the average person probably doesn’t realize that accessing covered care for your mental health needs is harder to come by when it’s for anything beyond anxiety and depression – something that can often be treated by a family GP. Waitlists for psychiatrists and developmental pediatricians are outrageous and if you need talk therapy, you better hope you have benefits to pay for it and most will only cover psychologists and not other accredited therapists such as social workers, etc. I’ve found the average cost to be around $150/hr for therapy and counselling. It’s a PRIVILEGE to have your mental health treated in Canada.

Let’s talk about THAT next Bell Let’s Talk Day. Let’s talk about ACTIONING how we can support each other as Canadians’ mental health has been dramatically declining through this pandemic, especially for our kiddos.

I thought I’d take a different approach by profiling my oldest son Jake’s struggles with mental health and ultimately, mental illness by highlighting all the lessons I learned in navigating the journey as his parent. There is a lot to cover so I will post it in two parts. These posts have been published with Jake’s consent.

Nothing came easy, right from the start. I have fancy psychology terms to describe things now, but at the time, it was all just HARD. Jake was an incredible kid and full of personality, but boy – could he throw a tantrum. Right from infancy, he would howl and his face would turn red as a tomato and he would be inconsolable. Even early on, I knew in my gut that Jake was struggling with emotional regulation; he had such a difficult time calming himself down when he got upset. I went through tons of Barbara Coloroso books on parenting and subscribed to the school of 1-2-3 Magic, but none of it seemed to work. Jake was intensively sensitive to other people’s feelings and moods. He was deeply caring and intuitive and could stop you in your tracks with his thoughtful questions, so it was no surprise that he wasn’t a kid that you could ‘fluff off’ with a dismissive reply. Nor was it a surprise that he couldn’t simply accept injustices or upsets as easily as other kids his age seemed to.

When his twin brothers came along and it became more and more obvious that they had developmental delays that were confirmed with a diagnosis of autism, Jake’s needs seemed to intensify as well in different ways. Psychologists will now assess our family’s story and assume that we met the classic profile of a scenario where one sibling, who was outnumbered by the crushing needs of his two disabled brothers, then suffered emotionally because his own needs couldn’t all be met by his parents because of their understandable distraction. There is a lot of truth in that. Making the scenario even more complex, from the time Jake could speak, we understood that he was grappling with understanding his gender identity. The challenges with this played out more so in his social interactions with the outside world than in our home, but for such a sensitive issue, not as much time and care were put into supporting Jake in this, as we were, quite frankly, buried in the overwhelm of coping with his brothers’ behavioural challenges.

Lessons Learned: 1. Normalization through books

I wish I had at the very least, introduced as many books as I could to Jake that normalized the issues of gender and disability. Stories about other little boys who liked to dress up like fancy ladies, or about kids who had siblings who had autism or other disabilities. Because we didn’t have examples in our social or family circles, I wish I could have exposed him to more to normalize it all and encourage more conversation.

It was very easy to bubble ourselves up in these early years and stay cocooned as we ‘coped’ with our day-to-day challenges and I swear to you – those days were all about reactive coping on no sleep. Despite my inclination to just get through each day and do it on my own, I took the advice of a few wise people in our life and made sure that all three boys had exposure to the outside world for their socialization skills. We got Jake into a day-home where there was another little boy his age for a few days a week – it freed me up a bit to deal with the twins and I knew he was having a blast. Within a couple of weeks, he started talking and came home with new play skills, an expanded diet and joy! Similarly, when the twins were diagnosed, we were encouraged to find a pre-school and we were SO blessed to find one that rented the space in our own church. They were instrumental in opening the world up to both Owen and Will; it formed the foundation of learning routine, turn-taking and all the other million things pre-schoolers learn from other children.

Lessons Learned: 2. Socialization with same-age peers

I fought against the idea. Why spend money on a dayhome or preschool if I’m home to watch my own kids? It made the world of difference for all of my kids not just to learn from other kids, but to acclimate them to learning to trust other adults who would lead and guide them.

After the boys’ diagnosis, we recognized that we could not, or would not, be able to meet the needs of the twins if we stayed in Ontario. The waitlists for services were disgusting and they capped out at the age of 6. We knew we would never access those supports and after having spent over six figures in their first year post-diagnosis, we couldn’t afford to stay. So we packed up and moved to Alberta, knowing it offered a different model of care that supported the entire family and it also offered everything the twins needed in terms of therapy and education. What it also meant, was that we were leaving our emotional support behind. We were leaving our family, our friends, co-workers and church family behind. After having relied so heavily on this community for the past couple of years, it was devastating to walk away from that and especially devastating for Jake. The one saving grace was that I recognized this truth immediately and knew I needed to prioritize extra support for him as soon as we were settled in our new home. I sensed that Jake was starting to exhibit resentment and anger, but because of his young age, he didn’t know what exactly he was mad at. He only knew that his whole world had turned upside down and all the people that gave him all the extra love that his distracted parents couldn’t always provide on command – were all suddenly unavailable to him. So besides trying to find extra-curricular activities that allowed the focus to be purely on him, we also found a psychologist who specialized in play therapy to meet regularly with him. It was a great fit. She understood our objective was not really to unpack any traumas or force conversations with Jake, but to build a relationship where he felt safe to potentially find his voice to let off some steam. It also introduced Jake to building a familiarity and trust with the world of mental health supports and talk therapy. We were also so fortunate to have connected with an old family friend of my parents who lived close by and she quickly adopted the role of substitute grandmother. Aunt Sally was lovely and took the time to meet Jake at his level. He was extraordinarily ‘adult’ for his age in terms of his interests and his ability to articulate his thoughts and Aunt Sally was a librarian – she LOVED to talk about books and get into in-depth conversations on topics that would just light him up. She also would take the time to spend time with Jake 1:1 away from the home and opened up a new world to him, by introducing him to a world of loving the outdoors by exploring the nearby Fish Creek Provincial Park. I was so grateful that Jake had such a caring person who loved him from outside of our chaotic family life.

Lessons Learned: 3. Introduce trusted adults

In these years, I wanted more than anything for Jake to trust that people cared about him. I knew that there would be times he didn’t want to talk to his Mom or Dad because we were likely the ones he wanted to be mad at, so placing trusted adults in his life that he could also count on, was very important for all of us. It paid off. Even after all these years, I believe that much of Jake’s successes have come from always believing that he can find someone to talk to – professionals, volunteers or people in his community – and all are options when it feels like there is no one in your own little world that you can trust your deepest thoughts and worries with.

These elementary school years were tough on Jake. His passion for the arts led us to enrol him in an arts immersion school for a few years and while it encouraged so many wonderful values, skills and passions, we could see that it wasn’t meeting his needs in developing his executive functioning skills. It became more and more apparent that Jake was meeting the criteria for Attention Deficit Disorder and the lack of a more formal structure at his school was causing him to fall further and further behind where he needed to be. We decided to make a switch to a public school and that’s when the real trouble started. Used to a very progressive classroom setting where the model was based on First Nations philosophies such as The Circle of Courage, his new classmates and school admin were not nearly as progressive-thinking and made it very clear when addressing some incidents of bullying that Jake was facing, that he wasn’t a good fit. When locked out by other students from entering the school after recess and called ‘Gay Jay’, the vice-principal told Jake that he should consider changing the clothes he wore to adapt and fit in better with the other kids. That was enough for us to decide this school was NOT going to be open to working with us to make his public school experience a positive one. We homeschooled for the remainder of the year. By this time, Jake was 11/12 and now experiencing some serious signs of anxiety; nightmares, mind-racing and not wanting to leave the driveway on his own. He was losing the spark that made him Jake and it was painful to watch.

Lessons Learned: 4. Develop consistent relationship with Developmental Pediatricians/Family Doctors/Psychologists when your child receives a diagnosis

If I could do it all over again, I would ask some important questions when meeting new professionals:

• Do they operate as single-issue referrals where once you’re treated for that issue, you’re dismissed from the caseload and require another referral?
• Do they have intentions of staying in the area for short or long-term? Are they near retirement?
• Do they believe in coordinated care with your other health care professionals?
• Do they provide case notes for parents?

All of this coincided with the decision for our family to move back to Ontario that summer. This timing was not ideal – there couldn’t be anything more disruptive than a cross-country move, but we believed it was the right move for our family. The move happened right while we were in the middle of trialing different medications for Jake to treat his ADHD. It hurt all of us. Leaving a relationship with his doctor before we could really get started, made it a real challenge to address concerns we had about the effects of medication. Moving from one province to another meant that it took us a significant amount of time to get established with a new family doctor, then to get a referral for a new specialist. The process was tedious and without having a medical professional to follow-up with Jake, I’m afraid to say that he slipped through the cracks in our family when it came to prioritising his medication. It was like starting from scratch with new doctors who didn’t know him and a lot of wasted time, frustration and duplication of efforts. This lesson proved to be a reoccurring issue in the years going forward as well for all three of our boys. Even if the answers to my listed questions above hadn’t been favourable, at least I would have had my expectations in check. There is probably nothing worse than spending years trying to find a good fit with a therapist, collaborating on a treatment plan that you are really excited about because you think it holds the key for finally addressing concerns, then learning that the therapist/doctor has moved on and dropped you from the caseload with no warning or direction on your next steps. It’s devastating and it has happened to us over and over again in the coordination of our autism services and in all the different experiences with Jake’s care in the mental health care system.

This leads me to my last lesson that I think is the most important of all, before I conclude Part One of what I learned.

Lessons Learned: 5. If you can access case coordination for your child – take advantage of it!

I can’t speak to what is happening now in Alberta, but when we were there, I would say the most valuable resource that was made available to my family was coordinated case management. The model was entirely different than what I’ve encountered in Ontario and I’m sure it’s down to provincial funding. I would also be so bold as to suggest that I think there is a lot of ego at play in provincial politics here as well.

Let me explain. In Alberta, from the moment we arrived and identified ourselves as requiring support for the twins’ autism (they were 3 at the time), we were assigned a social worker. Within the first week, she sat at my dining room table and we spent an entire afternoon charting out what would come next. Did the boys need to go to pre-school? Did we want to have behavioural therapy included in their pre-school setting? Did we need to access behavioural therapy for an at-home program (that included ABA, speech, Occupational Therapy, Physical Therapy? Did other family members require respite? Psychological support (therapy)? Did we need to find funding for x, y, z (clothing, home accommodations, transportation, diapers)? Did we need to find a family doctor and pediatricians? Did we require specialists for anyone’s medical needs? This social worker helped us sort through it all and stayed with us for the next six years. She accompanied me to appointments meeting new doctors, to interview agencies and schools – she took copious notes for me so I could focus, she provided emotional support when times were especially challenging in our household. She was a God-send.

Without boring you with the breakdown of the minutiae, I can simplify it by saying that her job was funded or made possible, by the coordination of several different ministries within the provincial funding model. She wasn’t a representative of just one ministry. She could speak to programming that was available from the Ministry of Health, Education, or Family/Child/Youth (whatever it was called). This is what I was referring to when I spoke about ego earlier. In Ontario, it has always seemed like the lines were drawn in the sand when it came to any collaboration between different ministries. When it comes to autism (as our example), an optimal treatment plan would have collaboration and cross-over between school, medical treatment, therapies and family/community support. But because the funding for all of those things is so distinctly separated, the ball seems to get punted from one ministry to another and no coordination ever happens because no one is willing to give up their funding.

To tie my rant into solid advice based on our experience, there are organizations and agencies out there, if you look for them, that provide consultative support in navigating the world of funding for mental health. Some will be funded privately and some are funded provincially, but administered through your region (in Ontario). In all of my experience, I don’t think I ever found any of these resources through Jake’s (or the twins’) doctors, or psychologists, or therapists. I found out about them from other parents, or online support groups. I know that there are many people out there who feel that they’ve found a great agency or doctor and don’t need this extra help, but I would strongly urge you to reconsider for one main reason. Once you’re on a caseload for case coordination, you’re in. You are remembered when new funding or programs become available so you get the head’s up beforehand. When cuts happen in funding and you lose your spot in whatever you are accessing, you will hopefully still have a caseworker to help you navigate next steps. It saves so much time so that you don’t have to go through an intake and get waitlisted to start from scratch.  

For more information on the best resource I’ve found locally, check out the Family Navigation Project (FNP) at Sunnybrook Hospital, that services the Greater Toronto Area. The FNP provides expert navigation of the mental health and addictions service system for youth and their families and peer-parental support.

Watch for Part Two to come out next week.