Being in public, even just standing in the grocery store line with her adult son, used to be embarrassing for Annie. Her adult son can’t be still. He’ll start bobbing his head. His body is jittery. He could easily be mistaken for a tweaker. She shrugs. “You get used to it,” she says. And he’s done worse.
Having a child who lives with mental illness feels sort of like being the parent who carries a newborn and two toddlers with head colds on the plane for a red-eye, only more extreme. Nobody wants to be near that mess, and everyone has an opinion. Also, there’s a lot of glaring.
In the stares and clucking of distaste that parents of atypical children often absorb, there seems to be a less than subliminal message that these parents chose this messy life and if they only desired things to be different, it could be so. As if these parents are weak. But parents of children with mental illness did not choose this club. Their child didn’t either. There are coping skills to be learned, but like those toddlers on a plane, you cannot control air pressure, or sinus pain, or always fix whatever is bothering them.
A person who lives with mental illness sometimes displays odd behaviors. A person with an injured leg may walk funny for a while and it’s the same for an injured brain; it’s not so odd when you think about it in that way, Right? What’s distinctly different is that a child’s mental illness challenges the stamina of parental love like nothing else. That’s in addition to judgment from others. Rebecca, one of our Behind the Wall parents, explained how excruciating it could be when her daughter, Stella, accused Rebecca that she was not her real mother. Stella’s father, Dan, recounts discomfiting conversations with Stella about the chip in her head. But for Stella, who heard voices clearly and sensed smells that others did not, the chip theory didn’t seem so far-fetched. It did make sense to her because her brain was feeding her different signals than what others know to be reality.
Simply spending time with a person who is experiencing a manic episode and/or psychosis presents challenges. It’s not easy. Depending on where a person is on the spectrum of recovery, there are frequent lapses in logical thinking that sometimes lead to risky behaviors and self-harm. Once, Annie’s son broke into a store after hours. He busted the door, got in, then realized he didn’t know what he was doing and left. He didn’t steal anything but damaged the door. His actions didn’t make sense.
Sometimes there are scenes. Ugly scenes. Jennifer, who lives with bipolar and borderline personality disorder, had developed a history of rages and alcohol use by the time she’d reached high-school age. This behavior was never permitted or condoned by her parents. In one incident, Jennifer had been drinking and was raging and throwing things at her boyfriend’s house. Her boyfriend’s parents banned Jennifer. Sadly, they must have also spread the word that she was out of control and it was about bad parenting. Jennifer’s sister, who had never been part of any such incident, was banned from spending time with the family that lived next door to the boyfriend. A loved one’s illness leaks into all aspects of family life.
As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them.
Only those who’ve parented a child who lives with serious mental illness can truly understand the challenges involved and the breadth of behaviors that arise because of the illness. Even for these parents, there is much experience required to distinguish between typical bad behaviors versus behaviors driven by the illness. They can’t possibly always get it right.
Parents of children who live with serious mental illness, like those beleaguered ones getting on a plane, aren’t asking for anything more than a little understanding. As one Behind the Wall parent says, most people don’t know what it’s like to have a loved one who lives with mental illness. Good for them. Living with a serious mental illness and being a parent/advocate has challenges that can only be fully understood by others living a similar experience.
Parents whose children live with mental illness aren’t asking anyone to sidle up to their chaos. These parents are also past wishing to be well-liked because major concerns are about keeping their child safe and stable. Parents aren’t asking for solutions, or agreement, or sympathy. Pity is not wanted. Just please don’t judge. And if one were so inclined, even a small gesture of support and kindness goes far for a parent enduring a journey where parental love is infinitely tested.
As always, your feedback is welcome.
This is what you do in an emergency: take care of your primary needs so you can help others who aren’t as capable. Put your oxygen mask on before helping your child. The concept seems contrary to what we know as parents. For many, parenting can be defined as a willingness to sacrifice everything to benefit your offspring. Save the child first!
But rationally, how can you save your child if you’ve passed out?
Such is the advice from the most heroic parents I have ever encountered. These parents have children diagnosed with serious mental illness and provided the stories for our collection entitled, Behind The Wall: The True Story of Mental Illness as Told by Parents. The analogy to “save oneself first” gets much play, but hearing this advice from parents of high need children (nearing adulthood or young adults) who weather unpredictable events layers an authentic sheen to the concept. Their advice to take care of oneself so you can be present for your child is fundamental for all parents.
Parenting at its easiest is still a marathon not a sprint. A high-need child is like adding twelve miles of hills. The question becomes, “How does a parent take care of oneself when the child requires constant attention, and a crisis can erupt without notice at any time?”
Dan (no real names used), a father of a daughter who lives with schizophrenia, advises to avoid making your child’s needs (or illness) the sole focus of your life. Of course, when a child is in crisis and/or going through a complicated process toward finding effective treatment, a parent needs (and wants) to be all in. But when the crisis lifts, Dan enjoys a hobby, riding his motorcycle. Sometimes Dan must put aside his needs to address his daughter’s, but when possible, he’s riding. He insists his hobbies, in turn, benefit his daughter. Says Dan, “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.” If a parent doesn’t live his own life, it can send a message to their child that they are incompetent, that there is no hope, no expectation that they can function on their own. And they won’t. And this goes for all parent-child dynamics.
For parents of high-need children approaching adulthood, there are often difficult logistical decisions to be made, the result of which impacts the whole family. In our recent blog, Society’s Way or Best Way, we wrote about ignoring societal pressure to “launch” a child, or make him live on his own before he is ready. A person living with mental illness requires time for the brain to heal after a psychotic episode or while recovering from severe depression, for example. After publishing our post, one of our contributors astutely commented that there are times when having a person with mental illness live in your home is disruptive to family members—the marriage, other siblings—and in those cases group homes are a best option. Parents sometimes feel guilty about admitting that when their child is in a treatment facility—hospital or group home—that their own home is calm and other family members are happier. It may appear to outsiders that sending a family member “away” is cruel, or selfish. It is never an easy decision to send a child away though ometimes doing so best serves the family’s well being.
Aside from hobbies, other parents cited that getting away for a weekend when possible, yoga, or even going out with friends was rejuvenating. Dan’s wife, Rebecca, spends time with friends. Maika, whose son Riley lives with schizoaffective disorder, walks her dogs. Sometimes her son’s behaviors, like binge drinking or deciding to go off medication, make her furious so she screams into pillows. Our contributors often recommended seeking therapy to cope with a challenging parenting journey —simply having a person with whom they can talk without being judged.
Most all of our contributors suggested support groups through organizations such as AL-ANON (Alcoholics Anonymous, http://www.al-anon.org/) or NAMI (National Alliance on Mental Illness: http://www.nami.org/). NAMI reports studies that show sharing one’s story and hearing others tell of similar experiences helps one feel less isolated. Simply, knowing you are not alone with whatever challenges you face is psychologically beneficial. That is the magic of support groups, and perhaps that is why at the completion of nearly every one of our interviews contributors commented they felt better by sharing their whole story. We often heard, “Whew! That felt good,” to finally unload the long and courageous journey of parenting a child living with mental illness. The act of sharing, and, potentially helping others was healing. Meanwhile, there we sat, in awe.
Whatever your method, put your mask on first.
As always, we love to hear from our reader / followers.
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!