In her widely reprinted essay, Welcome To Holland, writer Emily Perl Kingsley aptly describes the experience of having a child with special needs akin to landing in Holland when you’ve made extensive plans to go to Italy. While Ms. Kingsley used the analogy to describe her life raising a child born with Down’s syndrome, parents interviewed for Behind The Wall, whose children live with serious mental illness, were often confronted with a similar destination diversion—though usually not until their child’s teen years. They’d gotten to know their son, watched him develop skills and talents and then he changed. He could no longer play the cello, or read a book. A once-academic daughter couldn’t attend school. Maybe in hindsight the child was more sensitive than most, but one mother described her experience by saying, “This was like having a different child. Like one day we opened the door to find someone else had moved in.”
What is always remarkable, though, is the way parental love can take a person to the far away reaches of emotional strength, present new views one may never have come upon had they not, to use the analogy again, been dumped into unknown territory. We encountered this kind of heroic parenting in our collection of stories about mental illness, as did Andrew Solomon, in his brilliant book, Far From The Tree ( http://andrewsolomon.com/books/far-from-the-tree/ ) in which he interviews parents of children born under challenging circumstances, with unexpected identities or differences. Parents in Solomon’s book and those we met, exemplify parental strength, devotion and endurance, and more importantly, how they reached a metaphorical terra firma or redefined it.
To grapple with the unknowable, one mother we interviewed, Delia, introduced the term, “radical acceptance.” It’s a profoundly liberating term in many contexts. Delia’s daughter was diagnosed with a serious mental illness with symptoms that include bulimia, cutting, and anxiety. Delia’s daughter has always been a “difficult” child. Delia explains, she is not “okay” with the fact of her daughter’s illness, but she has reached “radical acceptance,” which means she understands the illness will always be part of her daughter’s life and therefore her own life, but she is not happy about it. She accepts it and she mourns it, in a loud and private way. This concept of radical acceptance has enabled her to cope, and be supportive to both her daughter partner. Her ability to accept without welcoming the concept is critical; in order to address her child’s illness effectively with early treatment, the facts of it must be accepted even though a parent mourns the implications.
No parent ever wants to accept his child has any serious illness, much less a highly stigmatized (and often very complicated to treat) mental illness. Most parents want to scream. And that’s where the beauty of “radical acceptance” is realized. Merriam Webster, in part defines “accept” as “… to endure without protest or reaction… to regard as proper, normal or inevitable… to recognize as true…” Certainly, mental illness can’t be “the normal course of things.” Some will want to deny it, or look for signs that the diagnosis is faulty, or maybe, as one parent put it, “Wonder if maybe he just smoked a little too much pot.”
Radical acceptance gives us an out. It allows us to have a stance that we accept the diagnosis, but don’t have to regard it without at least some internal protest or reaction, or regard it as proper, normal or inevitable. But we can radically accept that it exists and it must be addressed. We accept that we love our child, but we don’t like it—the illness. Not one bit. Radical acceptance allows us to rise to the occasion while acknowledging it’s not exactly what we’d wanted for our child.
Now, let us explore where we are.
Good parenting means your heart breaks in a million ways. When your son or daughter strikes out at bat, is ditched in the lunchroom, ignored by a “best friend,” or stood up by a boyfriend or girlfriend, a parent feels it. These incidents make any parent want to put their child in a bubble, surround them with goodness and light. And then your son tells you how much he hates you, your daughter ignores everything you say, and they leave you in a hundred different ways. It hurts when that child you held for hours in the night and kissed from head to tiny, little toe acts as if you don’t know them. At some point you really do need to get to know them in a whole different way.
Part of good parenting, and also dreadfully painful, is letting a child fail and learn to pick themselves back up; giving them the space to discover that one can survive after a so-called-friend declares they have moved on. Flubbing a line in a school play is not the end of the world.
While witnessing their mistakes, all we can do is provide support as they navigate through the problems and solutions. We must show that while we cannot live their life and their problems, we love them unconditionally. Yeah. No problem right?
As if that is not challenging enough for a parent, it becomes a hundred times more complicated when a child begins to use substances. Or, when one’s child suffers through a crisis related to mental illness, particularly when the crisis appears self-inflicted as in the case when a person binge drinks, or goes off medication. Here’s the rub. A person who lives with mental illness needs a reliable advocate, who usually and most effectively is a parent. But parents of those living with mental illness usually agree that their child achieved recovery only after they took control of their own life. A parent’s guidance is critical, but sadly, it is only part of the solution. There is hope for a person with mental illness, but only if they own it.
Parents with adult children diagnosed with mental illness, and this includes addictions, must walk that razor thin line of allowing some failure and not allowing their son or daughter to hit rock bottom. David Sheff, acclaimed author of Clean, and father of a son in recovery from addictions, (http://davidsheff.com/clean) advises against the mythology of the past of allowing your loved one to hit rock bottom. There’s too much danger in that, including the very real risk of death, and further, every relapse becomes more profound than the last.
So parents, we walk the line.
Perhaps you’ve noticed the PSAs produced by Bring Change 2 Mind, the mental health advocacy organization founded by Glenn Close and her sister Jesse. The organization’s mission is about reducing the stigma around mental illness. The ads feature people in pairs. In one ad, each pairing wears plain white t-shirts with one’s mental illness diagnosis, “schizophrenia,” for example, printed plainly across their front while their partner’s label may say, “sister,” or “wife,” or “mother.” These many white-shirted pairings move through a crowded train station, the obvious message being that there are many among us who live with mental illness and they and their loved ones wish to break the mental illness stigma and spread the word that there is hope. Another interpretation might be that there are many among us who live with mental illness who need support of another.
There’s more to Glenn Close’s partnership with her sister for mental health advocacy than her celebrity. It’s that in order to have hope with mental illness, there really must be a partnership of some kind, whether it’s a sibling, spouse, or in many cases, a parent. A mentally ill person’s chances for recovery significantly improve when they have support. A person in a mental health crisis is often incapable of the self-awareness that he is unwell and only a trusted partner can convince an often unreasonable individual into treatment. And even that can be dicey.
A mother of a son who lives with a serious, persistent mental illness once said she thought the reason there wasn’t more advocacy around mental illness, more marches and money raising for research, was because the parents and family members are too exhausted and can never plan anything too far in advance. You just never know what’s going to happen from one day to the next. Another mother we interviewed admitted, “You never know when the other shoe is going to drop.”
The truth is, a mental illness significantly impacts the loved ones of the diagnosed. Of course, most serious illnesses impact loved ones. But particularly in the early stages, brain disorders are wildly unpredictable. The illness can change day-by-day, hour-by-hour. Symptoms of one’s mental illness are frequently identified after a series of harrowing events, self-harm and frightening behavior. The brain is both delicate and powerful. Dan, whose daughter, Stella, was later diagnosed with schizophrenia, was engaged in intelligent conversation when she began talking about a chip in her head, seemingly out of nowhere.
I once overheard an acquaintance complain that she was tired of her friend cancelling plans on her all the time. “She’s so selfish,” She said. My jaw dropped. Because the “friend” she was complaining about is the parent of a son who lives with a serious brain disorder. Parents of adult children with mental illness often say things like, “Today we are great. If you’d have asked me two months ago…”
And that’s the rub. The parent of a mentally ill child makes for a lousy friend. Yet who needs support more than a person who is constantly on guard, monitoring another’s needs? When a crisis can, and often is, a life or death drama? They are preoccupied. They cancel, don’t return calls, and their everyday concerns are about who will care for and what will happen to their child tomorrow, next year, and after they are gone. When the abnormal amount of time passes without hearing from my friend, the mother of a bipolar son, I don’t take it personally. I worry.
As a result, it is common for the parents of adult children with brain disorders to lead rather isolated lives. It’s difficult for those who don’t live with a mentally ill person to understand the daily challenges. And again, it’s difficult to make plans.
Parents frequently tell us about the physical, mental and emotional exhaustion from expending the energy required to stay on top of things—whether it’s keeping their child on their medication or simply the constant monitoring of moods. Not to mention the stressful decision-making required during hospitalizations, or for addressing treatment choices, or even worse… the insurance.
A single mother of a son diagnosed with schizophrenia told us that while she is often exhausted beyond belief, she does have the support of a male friend who visits her son when he is hospitalized and while she is working. Her son’s friends, a very special group of young men who remain loyal, make sure to spend more time with him when she needs to be out of town.
Our social protocols don’t outline what to do when a friend’s loved one is diagnosed with mental illness only because society seems to see “mental illness” as something different than other serious illnesses. There aren’t flowers, cards, and casseroles. But perhaps there should be. And as with other illnesses, after the initial shock of the diagnosis, there could be follow-up calls, and the simple gesture of listening.
Let’s join Glenn Close and her sister Jesse in spreading the word about breaking the stigma of mental illness. Go one step further and help others understand what mental illness really means to the diagnosed and their loved ones. Some day, it won’t be uncommon for the families of a person diagnosed with serious mental illness to hear, “What do you really need?”
I have always relied upon other parents for advice—my mother, peers, and most of all my sisters, who happen to have professional training in child psychology and who exit a parenting phase as I enter. But recently, I came to the astounding discovery that the parents who have the most to offer are those who are least likely to share their parenting experiences with just anyone. These are parents whose children live with serious mental illness such as schizophrenia, bipolar disorder, borderline personality disorder, severe anxiety, and, or depression. These parents have a bounty of experience and advice for any parent. But because of the stigma around mental illness, they remain quiet.
I came into contact with these parents after my nephew’s behavior profoundly changed and he was later diagnosed with a serious mental illness. Everything I had known about parenting— that my sisters knew the answers—seemed to take a strange turn. Elin, his mother and my sister, was cast into unknown territory. She sought good doctors and researched but wasn’t really sure how to help her son and certainly wasn’t prepared to emotionally process what a mental illness diagnosis—a term so stigmatized— meant for her son and for her. But Elin understood the power of hearing others’ stories and I suggested we find mentors; that we turn to other parents, who have had or are experiencing a similar journey, to find support and learn how to help her son and her family. And maybe we could help other parents too.
Our collection entitled Behind The Wall: The True Story of Mental Illness as Told by Parents includes seven stories and amazing insights about love, understanding, but most specifically about parenting.
I knew this project would help my sister. I assumed I would gain insight into her journey and thus become better equipped to support her and her family. What surprised me were the invaluable lessons contributors offered for any parent. In fact, nothing has taught me more about parenting, or life, than the stories these super parents tell. The experiences these quiet heroes reveal often defy comprehension; their lessons are invaluable.
In particular, there are six common themes that surface repeatedly.
- Allow your child to set their pace.
One of the most difficult parenting concepts to internalize is that our children are not walking, breathing “mini-me’s” with our same goals and drive. We cannot expect to live our dreams through them and hopefully we don’t internalize their failings as our own either. We can show them what we believe is the best path, point out a book that may spark a reluctant reader, role-play a job interview scenario, but ultimately, a well-lived life is self-directed. Nurturing a child’s sense of who they are and what they want is the ultimate gift from a parent. It requires incredible patience because all of us must work, develop and grow at his own pace.
Dan and Rebecca, contributors to our story collection (no real names are used) have such patience. Their daughter, Kristin, suffered from deep depression and was hospitalized for treatment during her high school years. After she stabilized, Kristin was released, though her brain still required time to heal. People who suffer a significant brain event require anywhere from six to twenty-four months to heal. But she didn’t look sick. She didn’t act sick. Imagine the difficulty two hard-working parents had watching their daughter spend a year on the couch in sweat pants, not doing much of anything. Except she was. She was recovering, healing. And though there were times her parents wanted to shake her and tell her to get up, get dressed and get out, they knew they had to be patient. When she was ready, she rose from the couch, returned to school, and now works full-time in her career field.
Not all humans develop at the same rate and it’s unfair to become impatient with the pace a child is moving as long as they are moving toward something. Of course early intervention for learning differences or pronounced developmental issues is critical. But ask any educator or pediatrician and they will report that there are broad age ranges for learning to walk, talk, read, and ride a bike, for example. My daughter began to read competently at four and a half. My son was almost seven. Same house. Same parents. Different humans. We can also expect broad ranges for our children in finding their career and life path, but we can also expect them to continue to move forward.
When parents talk about their children who live with mental illness, they say, look how far you’ve come! Look how much better you understand yourself. The key, they say, is not to humiliate by comparing him to where a parent thinks he should be, or what his friends or siblings are accomplishing, but rather on his own accomplishments in the face of his personal challenges. Or, maybe the child is gifted like my niece who needed her curious mind constantly fed with books and museum trips and new experiences. Allow your child to set the pace and nurture and support it.
- Have realistic expectations.
Being patient with our child can still allow for expectations. Dan made it very clear that while his younger daughter, Stella, who lives with schizophrenia, may sometimes need to retreat from rigorous academic demands and other life stressors, he expects her to have a fulfilling life. He expects her to live the best life she can even with her challenges. That, he feels, is not only a realistic expectation but also a basic one. Bianca expects her son, Miguel, who lives with schizophrenia, to work a part-time job when he is well and to take care of his health, which includes taking his medications and seeking help when he feels unwell. She expects him, when he is living with her, to do his own dishes and walk the dogs. “He can walk. He can do this,” she says.
The important job we have as parents is to encourage and expect a child to try new things and always put forth one’s best effort. But one must master a finesse, for sure, to separate parental desires from a child’s own interests and passions. By having no expectation, Dan points out, “You’re sending the message that, ‘I don’t think you are capable of anything and there is nothing left in the world for you.’” Certainly, that is not healthy. Delia learned early that her naturally athletic daughter, Gianna, who was diagnosed with borderline personality disorder in her teens, could not participate in group activities or sports that caused her too much anxiety. Gianna now thrives in martial arts because that was the right fit for her.
We heard our contributor-parents tell us in many different ways that they came to understand that it isn’t best for a child to live out a parent’s dreams and expectations; it is important their child continues to be engaged and moving toward reasonable goals they have imposed for themselves.
- It’s not all your fault. It’s not all your success either.
Decades ago, it was common to blame the mother for causing mental illness. While we now understand mental illness results from a confluence of factors that include genetics, environment, and stress, most parents struggle at some point with misplaced feelings of guilt for causing their child’s illness. Delia, whose daughter was diagnosed at age fifteen with serious mental illness, wonders if she had been as strict as her parents had been, would her daughter have had fewer problems? As Delia has learned more about her daughter’s illness she understands and accepts that she is a good parent and in fact, from where I sit, rather heroic for her efforts and thoughtful outlook.
The point is this: a person’s success in life (an arbitrary concept and a whole different conversation) is not always the result of good, bad, or mediocre parenting. Most dedicated parents strive to provide a structured home life where children have a time and place for homework, a regular bedtime, healthy food, and appropriate consequences for misbehavior. A connected parent will throw a baseball with a little leaguer and listen to a child’s problems. These things contribute to the parent-child relationship and instill positive habits and well being. But doing these things offers no guarantees other than a greater possibility for closer parent-child bond. Unfortunately life’s demands don’t always allow us to be capable parents every day. And as if providing basic essentials aren’t enough, arguably, the true test of parenting is recognizing when a child has more significant needs outside the daily requirements and then finding effective help. Maika explains that as soon as she accepted her son’s mental illness diagnosis, his world got better. Still, success can come from broken and troubled homes too; parents can’t always provide a perfect environment and shouldn’t feel guilt over it. Sometimes, a parent does all the right things yet their child struggles all through life.
There seems to be a deep craving for knowing what to do for our offspring and then assurance that we are doing or did our best. And yet the measurement is arbitrary considering one human can have only so much control of another in a healthy relationship. Perhaps parental competence should be measured by how well we understand our child’s needs and whether a viable attempt was or is made to fulfill. When one’s son received a failing grade in high school, did the parent tell the teacher to give him a break and change the grade so he can get into a good college? Or did the parent work with him to learn underlying reasons he may be underperforming? Did a child reach out for help, and did his parent answer the call?
- Get a life.
There are times when our children’s needs demand all our time, attention, and emotional energy. When your twelve-year-old daughter is distraught because she wasn’t invited to a party with all her friends. When your son is bullied. While managing a child’s health crisis a parent must be at full attention. Nothing else matters. It’s difficult for most parents not to be thinking constantly about their children. When a child has a significant health issue or has high needs, all the family attention tends to be drawn to him, often at the expense of other children who feel neglected and a marriage that bows under the stress.
But when a child is in recovery and stable, parents need to do the things they enjoyed before or take up new interests– whether alone, with a spouse, or other children. As Dan says, “Don’t let your child’s illness become the core fact of your existence because you have your own existence apart from whatever your child is going through. I think that’s better for the child too. Because if the child starts feeling like everything is about them and what they’re going through and their problem, you end up with guilt and a sense of responsibility and that’s not positive.” Delia recommends a parent take care of oneself. Otherwise, “You’re not going to be there for your kid.”
In her book, Teach Your Children Well, Dr. Madeline Levine has a lot to say about the benefits of letting your child fail in order to grow into competent adults. Living, breathing, and managing a child’s every move intrudes on his ability to grow into a competent human. In this day and age of the infamous over-involved “helicopter parents,” many college professors and administrators note evidence that students have become incapable of managing their own affairs because parents orchestrate all facets of their lives, leaving them no room for discovery for how life really works.
For their own sake, and their children, parents need to have a life. It’s okay, maybe even necessary to miss one regular-season soccer match or baseball game because you’ve scheduled a much needed movie night with friends. There will be another game.
- Showing anger or humiliation is counterproductive.
There are times Maika is so angry with her son, Riley, – for drinking, for not taking his meds, for sleeping through the alarm for his morning class— that she hides in her bathroom, cranks up the fan, and screams into the vent until she is hoarse. She has learned that getting angry with him, in front of him, offers no benefit. Riley has been beaten, thrown in jail, and has wandered the streets homeless as a result of going off medication. She has experienced frantic weeks without hearing from him or knowing his whereabouts. Why wouldn’t she get furious when he even hints at going off his medication? So, Maika screams in the bathroom. Then she is calm. She reminds him of the consequences of going off medication, all the bad things that have happened as a result of going off meds in the past. Sometimes it sinks in. Sometimes not.
When Riley takes off wandering without remembering his cell phone charger much less his medication, what benefit comes from being angry at him upon his return? Though she is furious with him, when he is unwell or has been drinking, there is no reasoning with him. Being angry with a person who is mentally ill, or drunk, or having personal troubles only fans flames and can push them out of reach for future help when the individual is finally receptive. Parents of children who live with mental illness have learned that what their children need most is compassion and most of all, connection.
What’s the difference between connection and becoming over involved? One is making it known you are available when your child decides he needs assistance or support, but it’s not a bail-out. Over involved is directing every move and rescuing a child from any discomfort.
Maika does make it clear when his behavior is unacceptable because it impacts her directly. But anger doesn’t get the point across. She has learned from experience that keeping him close is more effective in the long term than risking him being driven away by her anger. Supporting a child while doling out consequences offers far better results. Requiring a teenage son to work for the money to pay off a speeding ticket, revoking a license, and adding items to his weekly chores teaches consequences and puts the onus on the child and emphasizes the problem is his. But getting angry makes the problem a parent’s, because that is who appears to suffer. Of course, easier said than done. Which brings us to…
- Never stop trying to connect. Ever.
Esme’s daughter, Jennifer, is a sweet, funny, smart young woman whose mental illness manifested in behaviors that caused chaos in the family home. She had rages and couldn’t always follow house rules. But Esme insisted on maintaining a strong connection. Says Esme, “We would always reach out to her, even after we’d had our explosions, her fights with us, to always say, ‘We love you no matter what.’” Esme believes their connection helped her daughter and always made clear the distinction between behavior and her daughter’s worth as a person. “Because she is a wonderful human being.”
Maika’s son experienced many psychotic episodes, homelessness, and once landed in jail for six months after committing an offense while suffering psychosis. During one of Riley’s street wanderings over several days, Maika bombarded him with texts as she usually did. When he finally called back he said, “I’ve been thinking about what you said.” At that time he had been ill for more than fifteen years, on and off medication, homeless and in and out of hospitals all over the country. But he was connected to her and when he was ready, he turned to her and said, “What I’ve been doing is not working. I’m ready to do it your way.”
I was most moved by this particular example of staying connected with one’s child. My sister had always done the right things for her children, from taking them to museums to providing music, athletics and good healthy food, none of which can stem mental illness. But most importantly, she listened to them, validated their feelings, and remains close. Her son has always felt comfortable talking to her. When symptoms of mental illness evolved, he felt safe confiding in her and asking for her help. Isn’t that what a parent wants—the opportunity to help their child in whatever challenges they have?
I’ve thought a lot about how to stay connected with my children. Sometimes it is simply putting the phone down or turning the car radio off and listening. It’s about asking questions rather than lecturing. I try to avoid adding my two cents. Once, after my daughter had experienced her first middle-school girl drama, which included the ever dreaded rite of passage ditching by her friends during lunch, I was feeling her pain having been there myself, albeit many years ago. That pain stays fresh. I began texting her just as Maika had done for her hurting son, telling her that I couldn’t wait to see her, that I had an idea for something to do after school… anything just to let her know that no matter what is happening outside the house, she has a loving home to which she can return and people who unconditionally accept her. Maybe she’ll roll her eyes at me, but being reminded you will always be loved goes long and deep.
And perhaps that is the most essential lesson of all that I’ve learned from the amazing parents who contributed to our project. Stay connected. Always.
Your comments are welcome!
By Mary Widdifield
My mother once told me, there was a time when people wouldn’t say the “c” word in polite company. Cancer, that is. Perhaps it was because in those days, there was little hope for recovery. But now people discuss their battle with cancer or whatever illness it may be, openly and often vividly.
Not so much the case for those diagnosed with serious mental illness or for the caregivers and loved ones of individuals living with mental illness. Yet, as with other illnesses, there is hope. But this is not common knowledge because of the stigma around mental illness.
Through our work interviewing parents for our collection of stories entitled, Behind The Wall: The True Story of Mental Illness as Told by Parents, my sister and co-editor, Elin Abercrombie, and I learned there is a whole other subset of high level parenting in our society. These are quiet heroes who have bravely told us their stories, experiences that are not typically conveyed in polite company.
I hope to bring more topics bubbling to the surface for my readers, covering the things hidden behind the wall within the subjects of parenting, family life, and the general human condition. Mostly serious, sometimes less so. Sometimes, there will be guest bloggers who have experiences to share. But always there will be brutal honesty…
Thanks for visiting.
We welcome comments!