Growing up with mental illness: How wraparound services offer parents options and support

People living with mental illness face stigma on a daily basis. They are blamed for their disease, called names, face discrimination, and feel shame that, in many cases, prevents them from seeking the help they need. When children develop a mental illness, parents face this stigma right along with them. They may feel that they are to blame or solely responsible for “fixing” their children. A Grand Rapids area mother of a teenager with mental illness explains.

“Parents with a child with cancer will get casseroles dropped off, get-well cards from their entire class, and many visitors in the hospital. However, that’s not how it works with a child who has a mental illness,” she says. “I didn’t start openly sharing that my daughter was in the hospital until her third stay. I was feeling alone, helpless, and hopeless.” 

Pam Squire, vice president the National Alliance on Mental Illness (NAMI) Kent County chapter, concurs. She is the parent of a child with mental illness who is now an adult.

“I never tried to hide what our family was going through, but, you know, there are lots of other people who don’t understand and have all kinds of wonderful advice,” she says. “Who really wants to receive that diagnosis? My son did not want to accept it. And, I wasn’t excited to have that diagnosis. There were people who thought we were doing him a great disservice. There’s definitely plenty of stigma.”

“20% of youth ages 13-18 live a with mental health condition.” *

When Squires’ son was diagnosed with ADHD at age seven, she went into action. She learned as much as she could about what he was dealing with. She sought help from a psychologist, psychiatrist, and neurologist.

“ADHD is such a trendy thing that I didn’t want to go with the first diagnosis,” she says. “The one thing I learned though all of this, we are talking about a chemical imbalance, something biological, not a personality flaw. Although medication isn’t going to fix it, it does help the chemical imbalance.”

Squires’ son’s diagnosis was changed to bipolar disorder when he hit adolescence. His psychiatrist told Squires that it was not unusual for children who are originally diagnosed ADHD to later receive a bipolar diagnosis.

“There was always something different about my child, from a very young age,” she says. “One thing I learned growing up, you’ve got to talk about this stuff. I wouldn’t change that. I am glad that I am open about it. I am glad that I talk to people about it. Holding it all in, you never know who knows something that might be helpful.”

“Mood disorders, including major depression, dysthymic disorder and bipolar disorder, are the third most common cause of hospitalization in the U.S. for both youth and adults aged 18–44.” *

While the school where the first mother’s child attends has a mental health liaison and a volunteer group that seeks to increase awareness, acceptance, and advocacy for mental health, she and her child still suffer the results of stigma on a regular basis.

“It can be difficult to get the support needed to help your child succeed,” she says. “We’re in an affluent school system that really pushes academics. In one school meeting with the principle, he told me that my daughter wasn’t going to get into a good college if she keeps missing school. My response was, ‘College? You don’t get it. I’m trying to keep my daughter alive and from dropping out today.’”

Stigma hits hard at home, too. When spouses disagree on what course to take with their child’s illness, it takes a toll on the marriage and the child. For example, one study found that parents of a child with attention deficit hyperactivity disorder (ADHD) were nearly twice as likely to divorce by the time the child is eight years old than parents of children without ADHD. 

“Having a child with mental illness can cause ongoing grief,” the mother cited above says. “We’ve lost the child we knew, their personality, their friends, their sports, and interests. You learn that this is the way it is and this could be permanent. But, there’s always hope that the child we once knew would return.”

“Suicide is the 3rd leading cause of death in youth ages 10 - 24. 90% of youth suicide victims had an underlying mental illness.”

Because suicide is a real risk for her daughter, this mother has a crisis plan listing doctors and hospitals, names and numbers, medications, insurance, and other important information readily available.

“My daughter knows it’s located on the refrigerator. And, we have the suicide hotline magnet on the mirrors in the bathroom,” the mother says. “I was first concerned about what others would think if they saw this in my bathrooms, but my daughter’s safety is so much more important than worrying about what others think.”

Kelley Roest talks with parents as a part of Network 180's Family Partnership Program.

In addition to stigma, single parents and families with income challenges face additional barriers to getting their children help when mental illness strikes. People working low-paying jobs without benefits like sick leave or paid time off may not only lose wages but face termination if they take time off to take children to mental health appointments. If they can manage the appointment times, they may not have reliable transportation to get there. If they have other children, childcare and childcare costs become another barrier. In addition, accessing any kind of healthcare with Medicaid not only presents additional hoops to jump through, but also can duplicate the stigma associated with asking for help. Families without insurance face even more impossible odds.

“We need to address the logistical barriers,” says Tina Worrall, communications coordinator for Network 180 Community Family Partnership. “Medicaid only pays for certain services. The issue of trying to hold down a job when a child has a thousand appointments a week. The car broke down and appointments aren’t on the bus line. A child misses an appointment so the parents owe money for it and then can’t get back in. It spirals. The question is, how are we going to set a family up for success rather than ‘three strikes and you’re out.’” 

The Community Family Partnership works from a “wraparound” model that coordinates a shared plan among all the systems working with the child — school, court, child welfare, mental health, etc. — together with the family’s natural supports, like church, neighbors, friends, youth groups, or family.  Based on the youth’s and family’s strengths, needs, and goals, the plan wraps all of the help around the child, rather than bombarding the family with a dissonant barrage of unrealistic expectations. The goal is to help the family keep their child at home and in the community.

“When parents feel they are part of a supported community, they do better and their children do better,” Worral says.

“African Americans and Hispanic Americans each use mental health services at about one-half the rate of Caucasian Americans and Asian Americans at about one-third the rate.”

Aware that the issue of mental illness is perceived and treated differently by different cultures and communities, Worral is reaching out to those communities in Kent County, specifically LatinX and African American communities, for input.

“I’m white so we had to put together focus groups,” she says. “We asked, ‘What are the barriers? What prevents treatment in your neighborhood community?’ We need to cater messaging to combat these stigmas.”

Worral discovered that many in the African American focus groups saw mental illness as a spiritual issue or weakness. This stigma prompts parents to seek help for their children at church, through prayer, or find ways to “toughen up” rather than seek therapy. In LatinX communities, immigration policies have created distrust of the government, especially when family members are undocumented. Here, language barriers also prevent access to programs.

“In the Hispanic community, when males are involved, there may be the notion that males are the ones who should be making the decisions. A lot of our workforce is young females — that doesn’t always go over well,” Worral says. “When a 20-something white female comes in to [treat the children of] a 57-year-old Hispanic male who takes pride in his family, there is a disconnect.”

“Youth of color that are experiencing mental illness are not doing well,” Worral continues. “We have a lot of disparity. They are over-represented in the juvenile justice system and foster care. They are underrepresented when it comes to receiving care for mental health. Out of that data, we have endeavored to train the workforce with our Culture Cafés.”

Culture Cafés involve participants in conversations about different aspects of mental healthcare disparities. For each topic covered, Community Family Partnership offers one Culture Café event catered to clinical staff, providers offering formal therapy, and probation staff. A separate event is offered to community members and nonprofit organizations that seek to reduce stigma and adjust programming to address the needs of children and families dealing with mental health issues.

“We work at a system level, service level, and community level,” Worral says. “They think of us as this program, but we are really much more comprehensive, doing an awful lot of work behind the scenes.”

“37% of students with a mental health condition at age 14 and older drop out of school—the highest dropout rate of any disability group.”

When a child is diagnosed with mental illness, a variety of treatments option exist in addition to prescribed medications. Children diagnosed with emotional dysregulation may respond well to Dialectical Behavior Therapy where they learn ways to handle different situations. Eventually, the Squires became involved in a recovery model that took a holistic approach.

“We looked at everything — medicines but also diet. Various strategies to use, like radical acceptance and different things like that,” she says. “We began working towards recovery rather than getting stuck in ‘I am sick and [will] never get better because there is not a cure.’ Mental illness is a lot like diabetes. You can’t cure it but you can certainly make your life more comfortable. That’s what the whole recovery model is all about.”

Music therapy has also proved an important adjunct in treating children experiencing mental illness. Franciscan Life Process Center has been offering music therapy since 1978. Involving all aspects of music — singing, playing, moving, listening, and creating — its program serves children with special needs, frail elderly, individuals in hospice, and those diagnosed with neurological disorders, cancer, or other medical conditions, as well as children and adults with severe mental illness.

Sandy Koteskey

“Music is processed globally in the brain. It’s processed in the memory, in the emotion. It’s processed in the language, the speech development. It’s processed in the sight and reading of music. It’s processed in the actual hearing, the auditory process, and in the motor cortex of the brain where you're producing the music and using your body to make the music or move to the music,” explains Sandy Koteskey, MT-BC, Music Therapy assistant director at Franciscan Life Process Center. “When you have a tool accessing every area possible in the brain where there is a potential deficit for an underdevelopment or something that needs to be strengthened, music can be that gateway to access that area.”

To enhance their sessions, music therapists here gather information about the child’s family and other experiences. They actively engage the family system for assistance in the healing process. By working with the whole family, exposing underlying issues contributing to a child’s behavior, and getting a clearer picture of what the child needs, the music therapists can set the whole family up for success.

“A lot of the ADHD and bipolar diagnoses are true but some may be a missed diagnosis due to an underlying issue,” Koteskey says. “We’re not trying to get anyone off their meds. Obviously something is going on. We have to get to the bottom of it when the parents are trying their hardest just to survive.”
 
“Just over half (50.6%) of children with a mental health condition aged 8-15 received mental health services in the previous year.”

Pam Squires’ son, now an adult, is succeeding in recovery. “It’s so exciting to see him accomplish things. When you first learn that your child has this devastating diagnosis, you grieve all of your hopes and dreams for that child. You have to readjust what you hope for them, what you think their future holds. To see him have these accomplishments is really exciting to me.”

Music is a powerful therapy.

Squires was terrified to see her child reach his 18th birthday, knowing his care would no longer be under her complete control. However, she also felt relief.

“It helps relieve some tension in your relationship with your child. Now, it’s not your job, it’s somebody else's. There’s a good chance you relieved that tension (of being in control) so you can have a better relationship. That’s the way it worked for us.”

In her role with NAMI Kent County, Squires is involved in a number of programs that support parents with children experiencing mental illness, as well as programs for the children themselves. NAMI chapters across the state and nation offer similar programs. In addition to a hotline (800-950-NAMI), crisis text number (741741), and its Ok2Talk blog where those impacted by mental illness can share their thoughts and feelings, NAMI hosts a variety of classes and support opportunities for parents, family caregivers, friends, adults and youth, and the whole family. Some are offered in Spanish. Most are free.

NAMI Provider Education helps those working with clients with mental illness to have more compassion while promoting a collaborative model of care. Facilitated by leaders who have personal experience with mental health conditions in their families, the NAMI Family & Friends seminar informs and supports people who have loved ones with a mental health condition with information about diagnoses, treatment, recovery, communication strategies, and crisis preparation.

“This is a pretty rough road. It’s really touchy at times to see if things are going to work out well for your child,” Squires concludes. “You have to come up with a goal, [essentially] asking, what would be success? They’re not angry all the time? Able to support themselves? They are happy and productive? Keep that goal in mind and let that guide how you try to help them. Believe that, at some point, you are going to make it. I am there now with my son. Hope is very important.”
___

Photos by Adam Bird of Bird + Bird Studio.

*This and other statistics presented in this article are from the National Alliance on Mental Illness (NAMI) fact sheet, “Mental Health Facts: Children and Teens,” which cites statistics provided by the National Institute of Mental Health.