The first concerns about Ben’s mental health arose when he started talking about killing his younger brother and using a saw to cut off his mother’s head.
He was three years old.
Ben’s mother, Theresa (names have been changed), had raised her sons “in a bubble.” When the TV was on, it was usually tuned to the preschooler-friendly Treehouse Network.
A single mom, Theresa guessed that Ben may have picked up something from the TV at his father’s home. However, the violent outbursts continued, and it became clear something more serious was happening.
“I was so scared,” said Theresa. She scoured the phonebook, looking for professionals who could help her, but the advice she often received was useless.
“When I spoke to doctors or nurses, they told me boys will be boys,” she said. “I was in this place where I felt something was off, but nobody would help me.”
Around 12 per cent of kids, or about 84,000 children and youth in B.C., experience some sort of mental disorder, according to a 2014 report from Simon Fraser University’s Child Health Policy Centre.
Anxiety disorders are the most common, afflicting around 25,000 children and youth in B.C.
Attention deficit/hyperactivity disorder (ADHD) may not be as rampant in society as some believe – impacting four of every 100 kids – but it is still the second-most common type of mental disorder, affecting around 16,600 youths aged four to 17.
Conduct and major depressive disorders affect an estimated 14,000 and 10,600 kids, respectively.
But of the tens of thousands of children affected by various mental issues, the report estimates that less than a third receive specialized mental health services.
That leaves an estimated 58,000 young people who aren’t getting help. Of those who do, many have stories of having to fight to receive a diagnosis that entitles them to assistance.
On a bright spring morning in a local coffee shop, Karen Copeland opens a binder and pulls out a piece of paper with dozens of boxes, a spider’s web of lines and the word “family” at the centre.
After years of bouncing among doctors, therapists and agencies trying to get help for her son, Karen created this mind-map to illustrate the logistical challenges facing the parents of a child with a mental disorder.
She found one expert would contradict another. A pediatrician would offer a suggestion or potential diagnosis, only for a psychiatrist to say something totally different. Few of those professionals actually saw her son for more than 15 minutes.
Last fall – a year after her son was finally diagnosed with a number of autism-related disorders – Karen sat down at her computer and started typing. In a blog post titled I Am ‘That’ Parent, Karen wrote: “I would love to tell you about trying to figure out what services might be available to support our child and our family. I would love to tell you about finding out about a certain resource, and feeling hopeful, only to be placed on a waitlist for at least six months.”
The irony is that the mothers and fathers of children with mental disorders can upend their lives in search of solutions but still be castigated by other parents.
Adam was only one when his mother, Amanda, first wondered whether his inability to sleep and general sensitivity might not just be a personal quirk. (Names have again been changed)
If touched by another child, Adam would lash out in fury.
He began attending daycare on a part-time basis around the age of three, but some days he would cry the entire time. When Amanda returned after just a couple of hours, Adam would be furious. “You left me!” he would yell. “You left me here again!”
Adam was initially diagnosed with sensory processing disorder, which means he was unable to properly process sounds, touches and smells. He also found personal interaction difficult. Over the ensuing years, Adam would receive a “shopping list” of diagnoses, including autism, verbal processing disorder, anxiety disorder, sleep disorder and OCD.
When Adam entered kindergarten at age five, he often couldn’t handle the busy classroom and would erupt in anger, throwing things.
That year, he was the subject of a petition organized by a parent of a classmate. Letters were sent to the school, including one that said the boy was “the type of kid that grows up to be a criminal.”
The petition was unsuccessful, thanks to a supportive teacher, but it was hardly the only instance of such disapproval. On one occasion, when Adam was five, he broke into a lineup of kids at a playground. Another parent intervened, touching Adam’s chest and explaining his actions were inappropriate. Amanda rushed over, fearing that he would strike out. Instead, Adam stuck out his tongue, made a sound, and ran away. The scene seemed to have cooled, until the parent turned to Amanda.
“I can’t believe you would let your kid come here and ruin it for everybody,” she said. “Your son is a monster.”
Theresa, Amanda and Karen all visited the five-bed psychiatric clinic at BC Children’s Hospital. Their children spent weeks at the site, after which they received their diagnoses and the attached community supports.
Last month, it was announced Fraser Health would be creating a 10-bed Child and Adolescent Psychiatric Stabilization Unit at Surrey Memorial Hospital. While the stays at the unit will be shorter than at Children’s, the beds will triple the province’s in-patient capacity for children with mental illness.
But 15 beds for 150,000 children with mental illness are unlikely to satisfy the demand from patients, who speak about waiting years for assistance and programs.
“You’re sitting here watching your child suffer,” says Amanda.
Ministry of Child and Family Development spokespeople acknowledged a waitlist of between one and four weeks for a spot in BC Children Hospital’s inpatient psychiatry, but experiences widely vary, according to Karen.
One parent reported asking for help for years before the option of a diagnostic stay at the hospital was even mentioned. Amanda said she found a variety of gatekeepers – some operating at cross-purposes. One psychiatrist initially blocked her attempts to get her child into the psychiatric unit before a pediatrician cleared their way into BC Children’s.
Yet, other parents told Karen they were admitted within weeks of being referred.
Mary Ellen Turpel-Lafond, the province’s Representative for Children and Youth, said British Columbia has a “dramatic shortage of therapy supports.”
From diagnosis to treatment, “every single part of that process needs to improve,” Turpel-Lafond told The News. She said she frequently comes away “heartbroken” from meetings with such families.
“The kids are bounced around. They’re so distressed because they can’t navigate the system.”
Families wait too long for diagnoses, she said, and time is wasted that could otherwise be used to treat the illnesses or provide behavioral training to allow the child to cope with a disorder.
The current system, she said, is a “mishmash of programs,” some of which work well but aren’t deployed across the province because of a lack of leadership. Turpel-Lafond worries that frustrated and desperate parents will increasingly turn to private care, removing some of the pressure from the public system, but also siphoning professional resources while creating a two-tiered environment.
Life remains a struggle for Amanda, who quit her job because Adam was unable to attend more than two hours of school a day. After three years of such struggle, Amanda pulled Adam from school to homeschool him. It has become clear that she’ll never have the normal family she once envisioned.
For one, she won’t leave Adam, now 10, alone with his seven-year-old brother after seeing him put his hands around the younger boy’s throat after being touched without warning.
At the same time, she sees wonderful things in her son. Beyond the outbursts, Adam loves his little brother, and will speak up for him when he’s sad. And while he might not be able to memorize the alphabet, he is a math whiz who dreams of becoming a computer scientist.
Meanwhile, Karen has increased her activism. She has spoken to school districts and has created a group she calls Champions for Community Mental Wellness to help other parents navigate the system.
Her child’s autism diagnosis means she and her husband now receive $6,000 a year for support services. After spending thousands of the family’s own money, having funding for behavioral interventionists, occupational therapists, counselling and other care helps significantly.
But that doesn’t solve all the problems. Although the government provides funding to schools for students with issues like autism, Karen pulled her son from class earlier this year, citing a lack of support, resources and understanding.
Her husband has a good job, and she feels lucky to be able to stay at home. “What about the single parent that can’t leave work?” she asks.
Karen knows a mother in Chilliwack who left a well-paying job and now subsists on government assistance in order to care for a child who was no longer welcome at school.
Theresa’s family life also remains tough, but at least some things are improving.
After a torturous kindergarten year, and after being diagnosed with ADHD and destructive behaviour disorder, Ben was admitted to the social development program at Blue Jay elementary.
“It saved our lives,” Theresa said. The program caters to kids with mental disorders and is run by specialized teachers. Ben spends part of his time in a regular classroom, and the rest in the social development space, which features an attached “calm down” room for kids having an outburst.
“At Blue Jay, those teachers are amazing. They’re actually involved in my child’s mental health.
“They’re providing so much more than a school experience.”
But one day, Ben will leave Blue Jay and enter middle school. So, late at night, Theresa will be on the internet, trying to learn more about her child’s “different kind of brain” while trying to untangle the web of programs offered.
“I remind myself: He is trying at the same time I am. He is trying as hard as he can.”