Stephanie Hepburn is a writer in New Orleans. She is the editor in chief of #CrisisTalk. You can reach her at .
Lisa Sabey is no stranger to complex topics — she’s written and produced films about mental health systems and suicide. Her most recent documentary, “Blue Baby,” follows formerly incarcerated youth through Boys Town, a residential program and incarceration alternative associated with positive outcomes. In “American Tragedy,” Sue Klebold reckons with how her son Dylan became one of the Columbine school shooters.
The Denver mother of six’s interest in filmmaking started at home after witnessing her daughter’s mental health deteriorate as she “fell down the rabbit hole of anorexia.” By the time she was 18, her daughter had been in and out of hospitals for years at the cost of $160,000 out-of-pocket. Missing throughout her daughter’s treatment, says Sabey, was family inclusion.
“What people don’t realize is when a child suffers with mental illness or has unhealthy behaviors, that strains the entire home,” she explains, adding that parents worry, their relationship becoming taut, stretching until it might break, and siblings start to close themselves off.
During an 8-week partial hospitalization at the nearby Children’s Hospital, her daughter navigated two parallel spaces — days at the hospital and nights at home where Sabey and her husband had been instructed to “get their daughter to eat.”
“But how?” asked Sabey. Exclusion meant they had no more knowledge than before about how to help their daughter. “We didn’t get any guidance on how to encourage her to eat or what to do if she refused.”
No matter the therapeutic environment, Sabey and her husband found themselves shut out. “We took her to residential treatment, intensive outpatient and weekly therapy,” she said, “and never once were we brought in or included as part of the therapeutic process that would be most helpful to our child.”
At 18, Sabey’s daughter moved across the country to be with her boyfriend in New York. Her parents were fearful, worrying they’d get a call that their daughter was ill or worse, dead. They were on parental standby: sick with concern but also parenting during the tenuous time between adolescence and adulthood. Their daughter was a teenager but legally old enough to make her own decisions. They’d be there if and when she asked.
During this time, Sabey’s husband told her, “Lisa, you’ve got to find meaning from this journey, so do whatever it takes.” Within weeks, she had begun making a film to help other families going through similar struggles. Sabey interviewed experts on what’s happening in the brain of a child with anorexia, co-occurring disorders and evidence-based treatments. In the film, she and other parents share what they’ve learned and wished they’d known earlier. “I wanted them not to feel alone.”
Since then, she’s made more than a dozen films. What stands out in stark contrast, she says, is how providers in the medical field communicate with families versus in mental health. Sabey has interviewed families whose children had both medical and mental health challenges. One had cancer and anxiety. Another struggled with diabetes and suicidal ideation.
Medical care providers included the parents in the treatment plan, educating them about their child’s illness and how best to support them. But when it came to the child’s mental health care, says Sabey, “they were left in the waiting room.”
Ironically, it wasn’t until Sabey’s daughter was 21 that they found a family-inclusive program. Still in New York, her anorexic behaviors had started up again. “She let us know what was happening.”
The Center for Balanced Living in Columbus, Ohio, which has since transitioned its services to The Emily Program, found that incorporating a person’s network is vital to long-term recovery. The center had video calls and in-person calls with her boyfriend, parents and siblings. Even her employer became engaged in the process, says Sabey. “Everybody understood that she needed to have something to eat every ‘X’ hours.”
During the weeklong partial hospitalization, a provider asked, “How can your mom help you?” The question Sabey had longed for since her daughter was first diagnosed at age 12. “All this time, I just wanted to know how to help my daughter.”
Sabey’s daughter explained that having her mother on the phone while she ate would be helpful. Her mother’s role would be as a distraction, not focusing on whether she’d eaten enough. “If I could tell she hadn’t eaten enough, she wanted me to ask, ‘How are you feeling about what you’ve eaten?’” “She gave me a template and that changed everything. Suddenly, we were part of the same team.”
The dialogue cracked open the tension-filled relationship, says Sabey. “She had been seeing us as the enemy of what she thought was helping her deal with her life, which was her anorexia.” Now, the relationship had space for course correction and forgiveness. “When I didn’t respond correctly, I could say, ‘Help me know how I should respond to you?’”
“It allowed her to be able to say, ‘I want to get over this and I will ask my family for help and tell them how to help me.’” “If we had been allowed to be part of her care from the beginning when she was age 12, I think this would’ve been such a different journey.”
Children and adolescents should have a confidential space to share their feelings and experiences, says Sabey. However, she feels using “the cloak of patient confidentiality” to perpetuate the notion that treatment plans and recovery are to be separate from the child’s support system inherently sets the child and family up for failure.
She says much of evidence-based therapy is skills-based. If providers include family members — parents, siblings, even extended family — they can learn skills and support the child 7 days a week instead of the child only getting care when with their provider. “Learning these skills will also improve the overall health of the entire family.
“If we can help those in the child’s network understand how to support the child, we exponentially multiply what we can do for the child.”
