During this time of year, social media posts abound with photos of unfathomably beautiful young men and women in glossy gowns, beaming beside one or two relieved parents, above congratulatory post after post. So Proud! What a future this kid has!
As it happens, this year, our extended family is blessed to celebrate the graduations of two young women of remarkable talents (if we do say so ourselves), one of whom is headed off to college and another who earned a graduate degree. I suspect, when all the ceremonies are done and dusted, there will be no less than two-dozen images posted, multiples of that in genuine congratulations.
But as it’s been said, participating in social media is a double-edged sword. Because for some parents, seeing their nephew, niece or even the neighbor’s kid positioned in that quintessential shot, though well earned, can be incredibly painful. Because not all parents get to watch their child make that customary journey, that straight line from Kindergarten to high school graduation, much less through college.
Many of the Behind the Wall parents talk of their struggle to accept the derailment of their child’s path as a result of mental illness. In many cases, their children had been good students, a few outstanding, and others were also musicians, artists and/or athletes. Until their middle grades, these parents had no reason to believe their child wouldn’t graduate high school and go off to college… like every other kid they knew. It had been assumed before even one page of Goodnight Moon was ever turned. As these parents witness the same cohort of men and women to which their child had once belonged and progressed with, grade-by-grade, now arrive at their graduation, they are confronted by the staggering challenges their own child faces. The graduation ceremony that should have included their child is a brutal reminder of an abandoned path. There is a sense of loss.
To cope with this reality, while still honoring the rightful celebrants, we turn to the wise Behind the Wall parents we interviewed. These parents are strong, their advice informed.
Esme’s daughter, Jennifer, became increasingly ill during her middle grades and into high school as she struggled with what was diagnosed as borderline then later bipolar disorder and complicated with substance use. Jennifer had always been a good student and yet, her brain disorder impeded her ability to finish all her coursework. As Esme put it, she couldn’t even finish a small assignment in English, what had previously been her favorite class.
Sadly, when teens struggle to finish simple coursework or cannot even attend school due to an encroaching mental illness, parents and their children are judged. During her high school years Jennifer also had a few public raging episodes. Talk of it traveled throughout her community. Esme knows that other parents blamed her for Jennifer’s behaviors. Esme says that for those who don’t know what it’s like to live with a person with emerging mental illness, it’s easy for others to judge; other parents assume, those parents let their child run wild, no discipline in that house.
One of the most painful experiences for Esme occurred the day that would have been her daughter’s high school graduation. That day, she drove her younger daughter to the ceremony to cheer on her older, graduating friends. Esme recalls how long that drive to the school felt for her, how excruciating the approach, thinking about what that day could have been for their family.
But Esme then corrects this thinking. It’s not her path. Not yet. What she now understands is that Jennifer will have to chart a different route for herself. There is hope; she can begin recovery and rebuild her life. When she’s ready.
Bianca, whose son became very ill early into his college years and has a diagnosis of schizophrenia, reminds parents to look at the progress of their child not in weeks or months, but over the course of a year. Where was he last year? Is it better? She’s referring to what recovery looks like for a person who is learning to manage their own mental health, particularly after a significant health crisis. What she’s saying is that parents can’t set the timetable for their children. Everyone has to set their own path and timetable.
One young man we know has become a successful tradesperson and is still, one of the kindest persons I’ve ever known. Another, Stella, had been an outstanding student throughout her life. In high school, she had to relearn how to learn during her recovery from a profound episode of psychosis. But she did learn to work with her own challenges and graduated with an engineering degree in a highly specialized field of study from a highly ranked university. For Esme, she is grateful for now that her daughter is working toward recovery, which is progress.
It is worth noting that a young person walking at graduation following an accident or hospitalization that derailed studies is often celebrated at graduation ceremonies. “Look! He’s back after that illness!” We’ve all seen the social media postings—standing ovations. Tears.
Not so much when a person takes leave of absence to address mental illness. That return is quiet. But for that too, we can hold out hope.
As I prepare to write the card and prepare the sentiments to the graduates in our family, I know I will remark on their accomplishments, that they have such promise in their future. These things are all true. I am deliriously happy for them. And this is the distinction that I have come to learn through the wisdom of Behind the Wall parents: That the success of my loved ones is not my own. That their failures aren’t either. What is to be celebrated is their achievement of their goals that they set out to accomplish on their own.
Amongst the pictures and postings of the young people and the less young ones, I will be celebrating goals met, futures open, whatever that looks like for the loved ones in our lives. Even if the accomplishments aren’t marked by graduation gowns.
We welcome your thoughts and comments!
Eight great bits of advice for parents whose children are diagnosed with serious mental illness from those who have been there: Behind The Wall Parents.Posted: April 8, 2014
As many followers of this blog, Facebook, and Twitter may know, we are doing some final edits for our book, Behind The Wall: The True Story of Mental Illness as Told by Parents, which we anticipate being available this fall. In the meantime, we thought we’d leak a little insight from our book in the form of these eight bits of great parenting advice.
The parents we were privileged to meet and bring to our readers have provided inspiration for their stamina and the wisdom they have gained through the journey of parenting and advocating for their child. Their advice is insightful, informed, and realistic. Some are applicable to parenting any child. We have summarized below what we feel are some of the most important bits of advice from this and previous chapters for a parent whose child is recently diagnosed with a serious mental illness.
- Be honest with yourself and your child. As many parents tell us, even when signs are apparent, it is difficult to accept a mental illness diagnosis. But delays in accepting any diagnosis can translate into missing the opportunity to begin treatment at early onset, which can possibly stem more serious effects of an illness that is not kept in check. Learning to manage mental illness requires a steep learning curve for the advocate and ill person, who will not reach recovery without fully embracing his own diagnosis. As Tessa, one of our contributors, says, “Once I accepted it, then his world got better.” A parent or trusted advocate must serve as role model, be honest with oneself, and accept the diagnosis because a person who does manage their mental illness can have a fulfilling, meaningful life.
- Trust your gut. Dan, a father who generously came forward, talks about the importance of listening to advice from professionals but that parents usually know their child best. In one incident, when his daughter feels unwell, he knows that sitting in a “padded room” was less beneficial to her health than coming home for the weekend to rest and be with family. Tessa knew that her son’s anger was more than what a therapist labeled as just teenage angst and she regrets not pursuing a second opinion. It is true that there are times when it is easier to be in denial. Arguably, denial is sometimes a survival tool. Parenting requires developing skills for knowing what cues are important to notice and what are symptoms of a passing phase, and for listening to one’s gut and not being afraid of the truth. It sometimes seems these skills take a life to perfect.
- Don’t be ashamed about a mental illness diagnosis. One may not want to go around talking about their loved one’s illness, as is the case with any illness, but another mother / contributor, Bianca, says to those who ask, “‘My son has schizophrenia.’ You know, you guys deal with it. I’m not going to hide it. That’s what it is.” It may be helpful to remember that mental illness is treatable, non-communicable, and diagnosed in one in four people globally. Feeling shame is not useful for reaching recovery.
- Be informed. Seeking out information about a diagnosis from one’s doctors as well as through books, trusted web sites, and support organizations can help parents cope and better manage a child’s illness. Staying current on credible research can improve an advocate’s understanding and acceptance of what a loved one is experiencing. We provide a list for suggested reading in our book.
- Allow time and space for grieving. In many cases, symptoms of mental illness manifests in behaviors that are strikingly different or exaggerated while positive qualities loved ones associated with the ill person become obfuscated, sometimes never to fully return. Mental illness affects thought processes and intellectual abilities temporarily or permanently. Parents grieve the loss of the person they once knew, the abilities and potential they once possessed. A person with mental illness feels this loss as well. Relationships between siblings are impacted. Relationships with those outside the family are affected. The whole family is impacted by a loved one’s mental illness. Moving through such instability requires time and strength to grieve parts of the relationship that are lost in order to build something new. It is important to remember that grief manifests uniquely for each individual.
- Find a method for coping that best fits you and your family. As Tessa points out, just as treatment for mental illness is unique to each individual, so too are methods for coping. For parents whose child has been recently diagnosed, group therapy may feel overwhelming. But when a parent is ready, many find that support groups and classes such as the Family–to–Family course offered by NAMI, provide support and information. Many parents lean heavily on their faith. Meditation, pets, and regular exercise are all activities in which many engage in order to cope with the stress and grief of having a loved one who lives with chronic mental illness. Parents, Dan and Rebecca, emphasize the importance of doing fun activities with one’s child, whether that means snowboarding or crocheting, it means finding an activity both parent and child can enjoy together where the illness is not central. Keeping the illness from being at the center of family life sends a message to the whole family that there is hope for mental health recovery and removes undue pressure for the diagnosed individual. And finally, as Bianca advises, having a sense of humor and finding “those normal moments” is helpful.
Individuals must accept their own illness and take responsibility for managing it, and this includes identifying a trusted advocate in a parent or loved one who can be depended upon during a crisis.
- Don’t blame yourself. It’s not about you. At some point the ill person has to own their illness. Parents whose adult children live with persistent mental illness understand that they possess only so much control. Individuals must accept their own illness and take responsibility for managing it, and this includes identifying a trusted advocate in a parent or loved one who can be depended upon during a crisis. A caregiver or advocate, which is often the parent, can find resources and encourage treatment compliance. But a person with mental illness must be willing to trust an advocate, stay compliant, and ask for help when necessary.
- Stay connected. Always. Maintaining a trusting connected relationship with a loved one who lives with a persistent mental illness can make a profound difference toward achieving recovery. But as Rebecca points out, it can be difficult to feel close to one’s own child when they are saying terrible things such as, “You are not my real mother,” or, “There’s a chip in my head.” But our Behind The Wall parents remind us that these behaviors are the illness, not the child and another mother, Esme, says, parents should understand these tirades are not about the parent. Behind The Wall parents express to their child that, “We love you even if we dislike your (recent) behavior.” Esme points out that being non-judgmental, honest and open to dialogue engenders trust. Parents can stay connected by showing support, listening, advocating for treatment, but also by setting boundaries that keep both child and parent safe. Tessa has a proven history of advocating for her son. When he becomes psychotic and wanders homeless, she continues to reach out to him, texting him to tell him that when he is ready to come home, she will help him. She will not judge him.