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Perspectives from Parents

The needs of children and families are the ultimate driving force behind workforce training, said Deborah Klein Walker, president of the Global Alliance for Behavioral Health and Social Justice and senior fellow at Abt Associates, who moderated the workshop’s first panel. How can training reflect the unique expertise and perspectives of parents, she asked. What kinds of structures need to be in place in health care delivery systems for this to happen? “We have asked the experts to be the lead at this workshop,” said Walker. “The experts are the parents, who really know day to day what is needed for their child with a behavioral health issue and for their families.”

FINDING AN EFFECTIVE PROGRAM

Rebecca Mueller and her husband adopted their son when he was 2 days old. “Being our first child, we kind of winged it. We’re still winging it most days,” she said. At an appointment before he was 2 months old, her son’s pediatrician said, “Something’s going on here. I’m not sure what, but let’s keep an eye on it.” Over the next year or so, Mueller noticed that her son often played too roughly at play groups. “He wasn’t mean or vicious. He just didn’t understand boundaries,” she recounted. “And parents would scowl at me and whisper to each other. It wasn’t very welcoming.”

When her son was 3, he entered a private preschool program, but 3 months later the family was asked to take him out of the program. “He just didn’t fit in,” Mueller said. The family talked with their local school district, and tests revealed issues with fine motor skills and attention. Their pediatrician also sent the family to a local children’s hospital for additional tests. Just after his 4th birthday, Mueller’s son received a diagnosis of attention deficit hyperactivity disorder (ADHD).

His physicians offered medication to treat the disorder, but Mueller did not want to medicate a 4-year-old. Instead, she began to look for programs that could meet their needs as a family. When her son was 5, she learned about The Incredible Years Program and was able to enroll her son in a subsidized study of the program.¹ “We won the lottery that day,” she said. Once a week the Muellers traveled to a meeting and spent several hours learning how to meet the needs of their son. He also went to classes that taught him how to manage his emotions, stay calm, and be more aware. In addition, the founder of the program persuaded the family to begin treating their son with guanfacine, a blood pressure medicine that has been effective with children diagnosed with ADHD.

“We had tremendous success,” said Mueller. “Today I get calls probably every month from people in our area who’ve heard about what I have experienced, and I always refer them to The Incredible Years Program.” However, costs can be a serious issue, she noted. A 14-week program costs about $5,000, which is too much for many families.

“My son is not cured,” said Mueller. “But if we hadn’t found The Incredible Years Program, it would have been so incredibly hard.”

OVERCOMING STIGMA

Robyn Kinebrew’s twin sons were born prematurely, at 33½ weeks, and with sickle cell disease. They went through surgeries and various other

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¹ Information about the program is available at http://www.incredibleyears.com [September 2017].

procedures and spent many days in the hospital. Dealing with the medical aspects of their conditions was straightforward, Kinebrew said. “The surgeons and hospital were there to help. I felt that it represented our strength as a family, and we had learned to navigate the system very well,” she recalled.

The emotional and behavioral aspects of their care were another matter. The disease is very difficult to manage. When her sons had a sickle cell crisis, they suffered from severe pain, which typically is treated with strong narcotics. Moreover, the symptoms of the disease have no obvious pattern. As she explained, “You might wake up in the morning, you’re fine, and by that night you’re in so much pain, you’re in the ER [emergency room] and you’re being admitted and treated, and you never know how long the admission is going to last. . . . There’s so much uncertainty.” Some days her sons went to school in pain, which put a great deal of stress on the entire family. They would text her from school to say that they were in pain and ask to be picked up. She would reply, “I can come pick you up, but can you just make it one more class? Can you make it one more bell? Try to make it through to the end.”

As her sons got older, the emotional issues became more pressing, and their hematologist recommended that the family see a therapist and work on pain management techniques such as meditation or coping mechanisms, separate from their primary clinician’s treatment. “I wanted them to have other tools besides medicine,” said Kinebrew. But when she took them to their first appointment with a therapist, she felt embarrassed and ashamed. “I didn’t want to run into anyone that I knew. I didn’t want people to think that there was something mentally wrong with my children. As you got on the elevator and you pushed the button, there was a certain floor you go to, and I felt that everybody was staring at us. . . . In my circle, you were considered a weak-minded person if you had to seek out help.”

African American families have many reasons why they may not seek treatment for an emotional or behavioral issue, said Kinebrew, one of which is the stigma that continues to be associated with behavioral health. Getting help for a physical condition is considered normal, but taboos still surround getting help from a mental health professional. She continued, “I’ve heard people say, ‘They’re just not strong enough. They can’t handle anything. That’s why they need to seek help.’ This is an issue in a lot of African American families. No matter the problem, nobody wants to be seen like you can’t handle it.”

Her sons were also skeptical. They had to miss school to see therapists when they had already missed many previous days. But they agreed, and since then they have gone to other self-management programs to reinforce the coping skills they have learned. Today her twins are sophomores in college and active in many leadership roles, including serving as resident

advisors. But even as Kinebrew was speaking at the forum, one of her sons was having a difficult pain crisis and using some of the coping mechanisms he had learned. “I want to end on a positive note,” Kinebrew said. “My feelings have evolved and changed, and I will continue to encourage other families to use a mental health therapist. It helps.”

CARING FOR THE ENTIRE FAMILY

When Breck Gamel was 38 weeks pregnant with her second son, he stopped moving in the womb. When she went to the hospital, the doctor urged an immediate delivery. Her son’s colon had burst in the womb because he has cystic fibrosis, a life-shortening disease that affects the lungs and gastrointestinal system. “It’s progressive,” said Gamel, “and while we hope there will be a cure in his lifetime, cystic fibrosis has a treatment burden that is intensive and requires hospitalizations and a lot of medications every day. It’s very hard to see my son suffer on a daily basis.”

At the time, Gamel’s older son was 2, and she had to be away from her family for extended periods while her newborn was in the neonatal intensive care unit. When she returned home, she began to notice issues with her older son. “He wasn’t moving out of the terrible twos. It was the terrible threes and the terrible fours. I couldn’t leave him with a babysitter because of his anxiety. He couldn’t leave my side, and I didn’t understand what was going on. Finally I had no other choice but to say, ‘I need help,’” she said.

She contacted therapists but found talk therapy does not work well with children who are barely talking. When she learned about play therapy as an option, she registered her son for a program, even though he was one of the youngest children in the program. At age 6, he began to take medications to treat his anxiety. He also received psycho-educational assessments when he began to have trouble in the first grade, which revealed that he was both gifted and dyslexic.

Gamel drew several lessons from her experience, the first being “don’t forget the siblings.” When a child has a disorder, the entire family suffers, not just that child and his or her parents.

Second, said Gamel, “don’t forget the caregivers.” Realizing that the families of children with cystic fibrosis often have to deal with anxiety and depression, the Cystic Fibrosis Foundation did a study that found siblings have even higher anxiety and depression than people with cystic fibrosis (Quittner et al., 2014). However, the study found the greatest anxiety and depression among caregivers, and especially among mothers, “because they’re the ones who are oftentimes the primary caregivers.” Yet resources are lacking to help caregivers deal with these issues, she noted.

Finally, Gamel reemphasized the point that caring for a child with special needs is burdensome. “It’s hard to find support. It’s hard to figure

out how you’re going to pay for support. Families who live with chronic diseases like mine are already bogged down by having to do breathing treatments and putting on a vest to shake his lungs, and we’re missing school because we’re at the doctor regularly, every couple of weeks or every couple of months. And then to have a doctor say to us, ‘Just go to this appointment, or go fill up this prescription.’ It is not as easy as that. It is just one more thing. It begins to add to the anxiety and depression that already exists,” she said. Families and caregivers need to find a way of gaining a sense of control and advocacy, she continued, so they can deal with their own behavioral health challenges. They also need to know where to go to get information and find people who can help them.

The parent is not the problem, she emphasized. Once, when a physician told her, “You need to be the mother,” she was shocked. The comment she should have made, she said, is, “Exactly—that’s why I want to make sure that you do your job.”

MAKING CONNECTIONS WITH PATIENTS AND FAMILIES

When Lynda Gargan’s son was 2, she began to notice “red flags that he might be walking a bit of a different path than some of his classmates.” When he was 4, his well-meaning preschool teacher was “at the end of her rope” with him. Gargan began to look more intensively for answers when he was in the third grade, though teachers still had a tendency to say, “he’s just a boy,” “he’s an athlete,” “give him time,” or “it’s a phase.” As Gargan said, “No one would listen to me.”

Gargan lived in secrecy about the issues her son was having until a public event finally brought them into the open. “I learned what happens when something like this goes public. I learned that it was my fault, the kid had too much money, his parents weren’t paying any attention,” she said. Gargan’s family had enough resources to seek help for her son. But “imagine what happens for disenfranchised families, fragile families, that are trying to piece together their lives day to day and are having these issues,” she said.

Gargan pointed out that crises are extremely unpredictable, as are physical health challenges. Policies and procedures are needed to support parents in these crises. “When I suddenly get a call saying, ‘Your son has just been arrested. We think you probably want to get down to the courthouse right now,’ there needs to be a way for me to do that without blame and embarrassment. I need to have everyone’s support, just as if I had gotten a call saying, ‘Your son just broke his leg, and you need to get to the hospital,’” she said.

Gargan urged teaching the behavioral health workforce to prioritize making human connections with the patients and families they serve. “If

we talked with a health care worker who did not make eye contact, I wrote them off. They weren’t going to be helpful,” she said. She also emphasized that parents are a child’s only constants, noting health care workers “come and go, but we will always be there.” Finally, she emphasized the need to bring parent and family peers into the workforce as respected partners.

When Gargan’s son graduated from college, he wanted to enter the military. But he was turned down because of the medication he had been taking since he was a teenager. “This is our first generation of highly medicated children,” she pointed out. “The military has no idea what that’s going to result in.”

Today her son is 28, works for an international company in sales, and is an “incredible, successful young man.” But the experience taught her about the prejudices still associated with behavioral health challenges. Physical health challenges tend to generate compassion, Gargan observed, but behavioral health challenges tend to make people back away. “We put our heads down,” she said. “We thank God it wasn’t our child. We have some work to do on normalizing behavioral health experiences.”

PARTNERING WITH BEHAVIORAL HEALTH CARE PROVIDERS

When her daughter began to suffer from severe anxiety, Millie Sweeney downplayed the problem and attributed it to a phase. But as her daughter approached her teen years, her anxiety was affecting everyone in the family. “If the wind blew, there was a tornado coming, . . . and she wants everybody to get into the closet. If it’s raining and we’re driving, she’s absolutely positive that we’re going to have a wreck, that someone’s going to slide into us. If it’s snowing, we’re not going to make it home,” Sweeney described. Her daughter began to have meltdowns at school during thunderstorms, sometimes resulting in calls saying that she was inconsolable. Her psychosomatic symptoms worsened, including stomachaches and headaches.

Neither her daughter nor Sweeney wanted to begin anti-anxiety medicine, but the situation continued to deteriorate. “Homework was a meltdown every night. It was about perfectionism. If she wrote something wrong, she would tear it up because the teacher would definitely give her an F if it wasn’t absolutely perfect,” Sweeney recalled. After trying to handle her daughter’s anxiety on her own, Sweeney found a therapist, and things slowly started to improve. “But the key to that change—and this is what I want to emphasize today—is that the therapist partnered with me as the parent. We were partners. We worked together toward the same goal with my daughter. She listened, she respected my role and my knowledge, and she did the same thing for my daughter,” Sweeney stated.

A critical breakthrough was discovering her daughter could channel her anxious energy into dance. “She could express her emotions in a way

that was acceptable. She was winning competitions. I saw her confidence and her competence go up, her coping skills, to the point that now she is a junior in one of the top 100 high schools in the nation,” Sweeney said. Her daughter is still anxious and has stomachaches before every test, “but she’s learning how to deal with that. She’s learned coping skills through therapy, because the therapist partnered with us,” Sweeney explained.

Parents and behavioral health care providers are partners, said Sweeney. Parents can teach providers, educators, therapists, or probation officers how to manage care for their children. “As we go into the next couple of days, talking about workforce development, consider the fact that parents are a critical emerging workforce in behavioral health,” she said. For example, Sweeney urged the creation of curricula for providers that focus on family-driven care, suggesting, “Have parents come and present. Have youth come and present. Starting there is the best way to train the new and upcoming workforce.” Such training can help build systems of care that foster cooperation among providers and families, she said.

The Family-Run Executive Director Leadership Association, where Sweeney is deputy director, works with family-run organizations on data collection, research partnerships, quality indicators for parent/peer support providers, and other workforce issues. “Parent/peer support providers can enhance any other service that’s going on,” she said. Such organizations also can act to institute policies and procedures that help normalize being a parent of a child with a behavioral disorder, she said.

DISCUSSION

Terms that Can Reduce Stigma

In response to a question about whether a term other than “mental health” or “behavioral health” might produce less stigma for parents and their children, Gamel responded that “calling it what it is has been the most empowering.” When she attended a previous conference to speak about her successes dealing with behavioral health issues, she said she had not realized that mental health care was what she had been doing. “I thought it was coping, I thought it was surviving. I didn’t know I was going to therapy,” she said, but added that referring to what she was dealing with as mental health was empowering for her. “The more [the term] gets used, the more embraced it can be. That would be my suggestion: calling it what it is,” Gamel said.

Gargan, in contrast, expressed a preference for the term “behavioral health.” That is the term that she uses clinically and personally, and it is more expansive than other terms. “The terminology is important,” she

added, “because words matter. But it’s the picture that comes to mind with the terminology that we have to work on.”

Kinebrew, too, favored the term “behavioral health” over “mental health.” For her, the latter still has negative connotations. When “I think ‘mental,’ I think something is wrong with me,” she said.

Sweeney agreed that “behavioral health” is a more expansive and accepted term. But she also urged asking families about the terms they prefer: “Some may be very comfortable with calling it what it is. I am. But others like to term it ‘coping skills’ or ‘emotional issues’. . . . It all depends, but ask.”

Mueller said that when she is asked, she says that she is seeing a therapist. “I don’t have a negative image of therapist,” she said. She added that when she uses the term with confidence, it does not have a negative implication.

Parents as Professionals and as Advocates

Another topic raised in the discussion period was whether parents acting as professionals or partners with professionals may undermine their ability to advocate for their children. Gargan observed that everyone in the health care workforce should be an advocate working on behalf of families. But while parents are advocating, they can also be providing support, “which is a very different thing.” Working with such parents may require cultural training within the workforce, but that should not be an insurmountable obstacle, she said.

Sweeney made the same point: parent/peer support has advocacy as one of its core competencies at the individual level and at the system level. Parents may need training in how to be assertive and not aggressive and how to be solution focused, but peer supervision can help parents balance their roles. Parents “need to have supervision from someone who helps them maintain their identity as a parent, who helps them when something that they are working through with another family triggers something about their own journey,” she said.

The Transition to Adulthood

A final topic of discussion during this session involved the transition from adolescence to adulthood at 18, when young people gain certain rights of confidentiality and autonomy. Gargan said that she and her son’s father talked with their son several years before he turned 18 about the upcoming change. They worked with health care professionals, filled out forms, and prepared for the transition. That way, she explained, “we have continued to have great family relationships with his professionals.”

Kinebrew, too, started at an early age to teach her sons how to speak up for themselves. “At 14, 15, 16, they answered questions for the doctors while I was in the room just to back them up. Even now, I’m still at the appointments for the most part, but they are the ones interacting with the doctors. . . . As they get older they’ll be able [and] confident.”

At the same time, Sweeney observed that health care providers need to help parents understand their evolving role. While young people are learning about their new responsibilities upon turning 18, parents need to get that information as well, she said.

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