When kids with mental illness can’t live at home
January 31 Kelly Burch
Many of Christine Walker’s friends are just starting to help their teenage children plan to leave home, whether for a job, college or a gap year. But Walker’s 16-year-old son Schuyler has already lived away from his family for seven years, spending nearly half his life in residential treatment programs and schools for children with severe mental illness.
“When Schuyler was 7, that was when I had tried absolutely everything — every pill, every doctor, every diet, every therapy, everything — and we were still at a point when home was unsafe,” says Walker, who lives in Winnetka, Ill. “I realized then that everything we had been trying to do wasn’t enough.”
Walker and her husband knew that the only way to meet Schuyler’s needs and protect their two younger kids was to have their oldest child live elsewhere. However, it took two years to finally act on that decision.
“It’s a last resort, but we had to check into that resort, because we’d done everything else,” Walker recalls.
Although it is rarely talked about, the Walkers’ experience is not uncommon. In 2015, 271,000 children ages 12 to 17 received care for mental illness at a residential treatment facility. Half of all chronic mental illness begins by age 14, and 13 percent of American children ages 8 to 15 will experience a severe mental disorder, according to the National Alliance on Mental Illness. More children in this country have a psychiatric disorder than have cancer, diabetes and AIDS combined, and for the most severely affected, residential treatment is the best way to ensure their safety and help them stay out of the juvenile justice system.
However, families that send their child to residential treatment programs often face judgment and misunderstanding. Mental illness, which is often treated as a taboo topic, is even more stigmatized in its youngest victims.
“If Schuyler had cancer, I would never think of myself as a failure if I didn’t do chemo in my living room,” Walker says. “I would never think of myself as giving up. This is a brain disorder.”
Doctors are sometimes hesitant to diagnose psychiatric disorders in children, and school systems and law enforcement are ill-equipped to handle the needs of children who can be violent and unpredictable. Too often, these systems look to the parents to explain children’s behaviors.
“There is a theme that we hear often, that parents are to blame: they need parenting classes or need to learn how to handle their kids,” says Jennifer Zielinski, program coordinator for Idaho Parents Unlimited, an organization that assists parents of children with disabilities and mental illness. Zielinski has four children, and her third, who is 11, has been in residential treatment for two years. “Ultimately, my child needed to be the focus. She needed comprehensive, daily treatment.”
When Randi Silverman, of Westchester County, N.Y., became concerned about her son’s extreme anxiety, she sought the help of his school psychiatrist. However, she was told that her son was fine and that she was the one in need of treatment.
“That was my first experience thinking maybe they’re right,” Silverman says. “I didn’t know kids could have any type of mental health condition. Clearly I am doing something wrong here.”
That doubt distracted from her son’s illness (ultimately diagnosed as bipolar disorder) and led to delays in treatment, says Silverman, who later made her family’s story into a film and founded the Youth Mental Health Project.
Silverman isn’t the only parent who was told that she was the problem. Zielinski dealt with accusations of Munchausen Syndrome by Proxy, where a caregiver creates or exaggerates a patient’s symptoms, and Walker was investigated by Child Protective Services.
“I was really afraid I was going to lose my family,” Walker says. “To have to prove your innocence to someone who has never met you is horrifying and terrifying. Families like ours are lumped in with the truly horrific things that are done to children.”
For many families, involvement from CPS and concern for the safety of their other children is a huge factor in deciding to place their ill child in a residential school. But placement can also be an important step for the mental and emotional well-being of the parent.
When her daughter left the family home, she “was able to heal,” Zielinski says. In turn, that allowed her to shed the roles of nurse, medication manager and parole officer that she had carried for so long, and reclaim the relationship that was most important: as her daughter’s mom.
“My husband and I both feel like we’re able to be her parent more today than we were before because we take on the role of just spending the day with her,” she says. “Before, there was no way for us to be her parents.”
Most importantly, residential treatment provides the structure and resources that children with mental illness need to thrive.
“Part of it is sad, but the gift that we gave Schuyler is being surrounded by adults who get him and think he’s an amazing kid and know [how to] offer empathy and de-escalate,” Walker says.
Yet even when parents realize they are doing what is best for their child, the process is painful. Christianna Hale, of Texas, says that she felt guilty sending her then-12-year-old son to live outside the home, despite years of experience working in the mental health field.
“Even within the profession there is a judgment that if your child is in residential treatment you must have failed, that you can’t be a good parent if he’s in residential treatment,” she says.
To maintain her connection to her son, Hale makes a six-hour round trip drive each Friday and Sunday so he can spend weekends at home. Research has shown that family involvement like this is essential to the child’s long-term success.
“You can see that groups that have a higher level of [family] involvement have better outcomes,” says Gary M. Blau, of the Child, Adolescent and Family Branch of the Substance Abuse and Mental Health Services Administration.
Blau is also the director of Building Bridges, a national initiative aiming to increase family and community support in the treatment of children with mental illness. He says that while residential treatment is sometimes necessary, facilities must move past unproven practices that limit communication between children and parents, and toward community-based services that allow the child to remain at home or at least have regular, meaningful contact with their family.
“We need to show these family members that they are not alone, and that help and hope are out there for each and every one of them,” Blau says.
Hale’s son is currently transitioning to living at home, and she is hopeful that he will be able to stay under her roof. However, she avoids putting too much emphasis on returning home as the ultimate goal. For some children with mental illness, this is simply not possible, and Hale believes that those children need to feel that they are succeeding, as well. She says that she would accept her son returning to the residential school in the future if that were best for him.
“It’s about finding the place where he can be successful,” she says. “Him being successful and feeling successful is the most important thing.”