Grownups At Play

Most of us remember our first bike—mine was red— and the feeling of cruising the neighborhood with a pack of kids, jumping curbs, racing and bombing hills. I also have fond memories of running through the neighbors’ yards, playing kick-the-can at dusk on hot summer evenings. A little bit sweaty and my skin splotched with the sticky remains of an ice cream cone and bug bites, heart racing with the thrill of the chase. I was one of the youngest and always got caught. But still, the thrill of playing pushed away any thoughts that could trouble a child-brain.

My bike now symbolizes fun, freedom, and the promise of an awesome rush of endorphins!

A few years ago, my husband and I were asked to join a softball team. I was not asked because I am good at softball. Truthfully, my eye-hand coordination is frequently the source of comic relief and that’s fine by me. But amongst our friends, there was a shortage of female players and the coed league has quotas. Lucky me. As it was throughout my whole athletic career, I wasn’t great, but I had a blast. We all had a blast despite losing every game. Well, maybe the more competitive and skilled players got less enjoyment than had we been a winning team, but no one will deny that the thrill of anticipation when the ball sails into the outfield (where of course I would be installed) or hurtling toward home plate is a magical, adrenaline pumping moment. I may not have been able to make a beautiful play, but the idea of it, maybe more like a fantasy, offered the rush I remembered from playing childhood games and school team sports. Heart pounding. Forgetting about all the other stuff.

I love the trails near my home and getting out in nature.

And that’s just it: forgetting all the other stuff.

Elin and I talk a lot about the importance of “self-care” for parents who advocate for a child who has a serious brain disorder. Finding activities that bring joy and peace are an important piece of self-care. Finding an escape from day to day discussions of “the illness” benefits a person’s well being. These activities can be things that a parent likes to do alone or with the other parent or a friend. Or on a team. Ideally, a family can participate together in an activity like hiking, swimming, skiing, or cooking together. A father we interviewed for our Behind the Wall story collection, who has a daughter living with serious mental illness, advises doing whatever activity your child (or children) enjoy(s), whether that’s snowboarding or crocheting, but something that gets away from thinking and discussing the illness.

Basically, have some fun. Feel joy. Feel like a kid.

Recently, I rediscovered cycling. One day I took my mountain bike out of its long hibernation in our garage and started riding. I get nervous on tight, gravelly curves and steep, rocky descents. But the process of working on my fears in the physical world takes my mind temporarily away from real life issues I’m juggling. Riding on the trails offers that same thrill of freedom I felt as a kid in our neighborhood. A few weeks ago, my son joined me on a ride and showed me how to conquer the steep descents, specifically, a short set of concrete stairs. He made it look fun and compared doing the jump on our bikes to the thrill he gets skateboarding. He made it look easy too. Truthfully, with good body positioning, it is easy on a mountain bike. So, there I sat, poised at the top of the stairs while my heart knocked around my chest and he calmly talked me through each move through the descent. “You can do this Mom. We are not leaving until you do it smoothly. Without freaking out.” Roles were reversed; he was showing me how to play like a kid. No one talked about homework, financial issues, health issues, or future plans except what was right there before us. Those stairs, and the next ramp we’d tackle. One of the best afternoons of my life.

There really is nothing like the rush of adrenaline and being out in nature to cure (even if temporarily) whatever is nagging at you. It’s certainly working for me. I’ve also started riding a road bike too. I go with friends, or alone, with a loved one, and feel the positive effects for days after. It’s my thing.

For Elin, it’s riding her cruiser at the beach, swimming in the ocean, rowing on her kayak and walking her sweet dogs in the woods. Find your thing. Do your thing.

It’s what your loved ones need you to do.

 

As always, your thoughts are valuable to us:


The (other) kids are all right… Or are they?

Sharing joyful times in early childhood builds lasting sibling relationships.

In our story collection and book, Behind the Wall: The True Stories of Mental Illness, as Told by Parents, the parent-contributors offer advice and talk in-depth about the emotional journey—rife with grief— that defines their experience advocating for a child with a persistent mental illness. As heartbreaking as it is to watch their diagnosed child suffer, parents also acknowledge the pain their “well” children endure. At almost every speaking engagement for our book, we are asked, “What about the sibling(s)?”

Parents tell us that their children, who are the siblings of a chronically mentally ill person, grieve deeply. There are several sources of a sibling’s grief. Shifting dynamics within the family is a significant factor. In a typical scenario, a very ill child with immediate and all-consuming needs hijacks parental attention while other children are inadvertently ignored. Parents typically focus on the child who constantly gets into fights, has run-ins with the law or is abusing substances. Meanwhile, a sibling may be quietly suffering without acknowledgment. Kids need to know a parent is emotionally available, which is not necessarily the case when another child is in crisis.

Though one child’s emotional health may be the most grave, all children need support. In fact, the whole family unit needs support. But sadly, grieving parents, who are also in triage mode, may be temporarily incapable of recognizing and/or providing for the emotional needs of their other children. Parents admit they were even unaware of their own grief while experiencing it. Most worrisome is that a young person’s unchecked grief can develop into more serious health issues later.

Such was the case for Kerri, whose son, Tomas, is prone to rages. When he doesn’t get what he wants, she says, he threatens to break things and then does it. His behaviors ruin special times for her daughter and make it uncomfortable to have houseguests. Kerri says her younger daughter had “enjoyed the time when Tomas was away at college. She had felt free to bring friends around, not worried her brother was going to do something weird” (qtd. in Widdifield and Widdifield 44).

Tomas’s all-consuming illness draws attention from his younger sister’s needs due to his demands, anger, and the way he often puts himself in harm’s way, creating one crisis after another. Tomas’s destructive behaviors and the resulting stress in the home, Kerri believes, have affected her daughter’s health.

I’ve always felt he’s ruined things for his younger sister. Here we are, trying to look at colleges and had planned a whole weekend… Our daughter, who’s a great kid and good student, was having health problems, and I always wonder if it was connected to the stress of her brother’s illness and all the uncertainty he has caused. She was first diagnosed with Lyme disease then later with chronic fatigue syndrome with fibromyalgia. We’ll never know her diagnosis for sure, but she became depressed from not feeling well, always feeling tired and run down, and it finally got to her. (qtd. in Widdifield and Widdifield 47).

When Tomas is at home, Kerri says, the family often feels as if they are “walking on eggshells.” Their home is not always a place of calm and peace because of Tomas, clearly not an environment conducive to entertaining friends much less healing.

In another scenario in which parental attention is diverted to the child who is acting out, siblings may subsume their own problems for fear of causing their parents more heartbreak. But unaddressed or unresolved emotional issues can bloom into larger problems. Still, other siblings use the shift in attention to engage in risky behaviors while remaining under the diverted radar of parents who are emotionally and logistically consumed.

Grief also derives from siblings feeling that they have “lost” their bother or sister to the illness. A person with a brain disorder often suffers cognitive (and personality) changes that may be permanent. Sometimes there is memory loss. It is bewildering to all family members and siblings that their brother or sister creates so much trouble and refuses to follow basic rules they once could understand; or that behaviors that are not tolerated from any other family member are excused for the “ill child.” Children are understandably angry with a sibling who creates unnecessary drama and seems to ruin every family event—from birthday dinners to vacations.

Sadly, a young person can’t often escape the impact of their sibling’s behaviors through supports outside the home, either. The stigma of mental illness means that a loved one’s health challenges are not usually disclosed to extended family or close friends for fear of being judged or, as one parent says, because others “can’t possibly understand what I’m going through.” Parents know that because of the bad (sometimes bizarre) behaviors of their child whose illness may be undiagnosed or under-treated, their parenting is scrutinized by those who don’t understand mental illness. Other family members are scrutinized too.

Esme, a parent-contributor says that her daughter, Laura, suffered directly when attention became focused on Jennifer’s chaotic, raging behaviors caused by her mental illness. Laura, a naturally easy-going and upbeat person, was banned from the home of a long-time friend by his parents who believed she would become like her sister, Jennifer. Not only did the community conflate Jennifer’s behaviors with Laura’s, but also Laura’s emotional needs were subsumed by her sister’s volatile, demanding behaviors. Being misunderstood in one’s community is hurtful, especially for young people. About community judgment Esme says,

I was hurt, but there was no action I could take other than console Laura who had by then been affected more than once by the community because of Jennifer’s behavior. That’s what stung the most. At that time Laura was starting to experience depression, which was also crushing. We definitely never intentionally ignored her, but we did ignore her because we missed cues that could have informed us of her well-being, and we shouldn’t have. It was accidental because we were focusing 98 percent of our attention on one child. (qtd. in Widdifield and Widdifield 37).

Growing up with a sibling or any close family member known for disruptive behaviors can lead to feeling isolated from one’s community. This isolation compounds the grief of “losing” a loved one to a brain disorder, especially when friends and community don’t acknowledge loss or recognize support is needed. A brain disorder, as many know, is not a “casserole disease.” Yet, all loved ones, including the person living with mental illness, suffer from a loss the relationships before the illness became symptomatic. As Bianca, a mother we interviewed astutely observes,

When a person has a brain disorder it’s traumatic for the family, like experiencing a death. If Miguel had been in a car accident and had brain damage, everybody would have enfolded him. The loss [his brother] Arturo felt about Miguel’s illness affected him the way I felt the loss and hurt of my divorce: if the man had died, I’d have gotten a card. Flowers at least. You are left with pain and grief that no one acknowledges. (qtd. in Widdifield and Widdifield 226).

Still, it’s important to know that families can heal and recovery is possible for a person living with a brain disorder. The grieving process represents progress, allowing for a “new normal” to bloom. Families of a person with serious, chronic mental illness are forever changed but they don’t have to remain broken. First, parents need to take care of themselves in order to support their children. Parents like Esme also recommend spending one-on-one time with each child to strengthen the parent-child relationship. Though creating that “normal” one-on-one time with other family members requires some work at first, it doesn’t have to involve complicated plans. Says Esme,

I’ve been learning to have balance and spend more time with Laura when her social schedule allows. When she was taking driver’s education I’d spend time in the car with her. We take moments. “Let’s go have dinner, just you and me.” Or, “Let’s go driving for an hour and stop along the way and go into shops . . .” Anything to steal a moment so she feels connected. (qtd. in Widdifield and Widdifield 37-38)

Even as adolescents and young adults rebel or seem to rebuff parental attention, children do need time with their parent(s). As another parent recommends, find something, anything that your child likes to do and share that activity. “Maybe it’s crochet,” he says. Many families do find fun activities that involve every family member to help heal relationships and reach a ‘new normal.’ Activities can be simple, such as hiking, biking, playing a board game, working a puzzle together or watching a movie at home. Start with something small if that’s what it takes.

Elin and I are fortunate to have supportive sibling relationships.

Siblings need time to heal from their own journey grappling with “losing” the sibling they knew, escaping the chaos the illness creates in the home and/or accepting their loved one’s mental illness. Siblings may escape or lose regular contact with the family for short-term or long-term. In some cases, the sibling relationship becomes (or is deemed) irreparable, even toxic for one or both persons. For others, siblings come to an understanding and may even be drawn closer. Having shared joyful, meaningful early years together can determine the long-term relationships between siblings and those who understand mental illness, usually become in awe of their loved one’s strength to manage it.* Many siblings we met became the compassionate, adult healthcare advocates, managing their own journey loving and supporting a person with a chronic brain disorder.

No matter what the scenario, the journey of the person whose sibling lives with a serious and chronic mental illness must be acknowledged.


We recommend finding support at your local National Alliance on Mental Illness (NAMI) affiliate and participating in the free twelve-week Family-to-Family course to learn evidence-based information on mental illness, how to communicate with your loved one and about healthy self-care. NAMI was a resource many parent contributors found to be helpful in their journey.

*For an example of sibling compassion and understanding, please see our March 20, 2014 guest post from Michael Ross about his sister Michele, Eulogy for Michelle: Defining the Success in My Sister’s Life

If you would like to share your story, please connect to us privately through this website or private email at: mwiddi [at] yahoo.com. Identity of contributors remains anonymous to protect family members.

Of course, we welcome any comments:

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Back to School Daze: Undiagnosed learning challenges and mental well being

“If only he was motivated…”

“She’s lazy.”

“If only he cared at all about his work.”

This is what parents of kids who have difficulties focusing on schoolwork hear from teachers.[1] Or what the parents of students who have mood disorders, such as anxiety and depression, hear because the noise in their child’s head is distracting.

These things are said to parents during that inevitable meeting scheduled because the student hasn’t handed in assignments, often forgets or loses required worksheets, acts out in class, and even though the student is quite capable of the work, is barely passing the class. Sometimes this kid is the class clown. In this meeting, the parent feels frustrated and guilty because she had no idea it’d gotten so bad and why is it so difficult for her child to hand in finished work? And the teacher sighs because the rules are simple. Assignments are clearly written on the board and class is structured such that students can succeed. And there are all these different times for tutoring (as if this student will remember those tutoring times, or where those times are written down, and when they go to tutoring, they think they’ve got it down only to come home and forget what they were supposed to focus on).

Then the teacher says, “You are completely capable of this work.” Because they are bright enough to master the material, and when they contribute in class, their ideas are thoughtful and articulate, which always takes the teacher by surprise because what this student says during class discussions is not reflected in submitted work.

The student slumps in his chair and says, “Yeah, I’ll try harder. Yeah. I’ll get the work done. I’ll keep my binder organized. I won’t talk in class.” And they mean it. They really do want to do well in school.

But really, they can’t help it. They try but cannot do it like the other kids. It takes him longer to settle into the work, to shut down the interior noise to focus on the lesson. These students are distracted by the waving flag outside, a girl’s tinkling bracelets and the awesome skate shoes Jason is wearing. Or maybe they are worried about being away from their home, wondering if their parents are safe, and thinking about all the bad things that could happen. Or maybe the student takes longer than others to understand what was just said while the rest of the class has moved on to another topic. It’s always something. This kind of student needs a little extra help.

Maybe you’ve been the parent in this meeting?

One mother tells a story to which many of us can relate. Most afternoons, she’d watch her bright child, who struggles to focus,[2] open his math book only to stare blankly at the pages. For an hour. She’d prod, “C’mon, hon. Focus. One problem at a time.” But because of the way his brain works, the number of problems—two sides of a sheet or often several pages— felt overwhelming, which often made him feel anxious about getting through it, which also paralyzed him to even get started. He knew how to do the problems but is a slow worker and would lose momentum after two problems. For these kinds of students, knowing that they will be spending hours each night getting through just one subject crushes any joy of learning. It’s depressing. Anxiety provoking. Often they don’t finish. Or do it at all. Then there’s the act of actually handing in the work.

Students with these types of learning challenges need support to develop workaround strategies and accommodations to prevent the student from shutting down altogether due to feeling overwhelmed. For some, it’s too much information coming at them at once. Accommodations may be as simple (for teachers) as requiring less homework, providing copies of class notes, giving gentle class-time reminders to pay attention and a dedicated front-row seat. Others require more assistance (formal specialized curriculum known as IEP) and skill development for success. Medication prescribed by a qualified medical professional may help. Success is achievable.

Offering accommodations is not about lowering standards. It’s leveling the playing field and providing an opportunity for each student to develop learning strategies specific to his or her challenges in order to reach success. Identifying what motivates a student provides a pathway to learning that is otherwise seemingly inaccessible.

In elementary grades, teachers spend most of the school day with their students and become well acquainted with each child’s learning style. In my children’s elementary school, teachers are well trained in presenting each lesson in different ways so that each student has the ability to grasp the material and develop skills at their own pace. For example, by the end of fifth grade, all those students were writing several paragraph essays. Later, students’ challenges are exacerbated in middle school where there is less time for individual attention and work is more rigorous.


…I was the parent in the meeting being told, “If your child only cared more,” a comment that made me want to leap across those uncomfortable desks and nearly strangle that well-meaning teacher.


By middle school, I was the parent in the meeting being told, “If your child only cared more,” a comment that made me want to leap across those uncomfortable desks and nearly strangle that well-meaning teacher. Because watching my child struggle every afternoon is not what a kid does if he doesn’t care. I requested that my student be tested (standard academic/psychological test) to identify root causes so we could better develop strategies and skills. I knew we needed to find solutions and I had made that exact promise to my child. I wasn’t expecting a solution that would make schoolwork a breeze. Challenge is good, but feeling constantly overwhelmed in a school setting can lead to deeper long-term issues that impact a person’s well being, including mental health.

Public school districts are legally required to provide to struggling students the testing that can identify how a student processes information and other specific challenges and strengths. This valuable information enables teachers and parents to provide workaround tools for success in school and life. We cannot change the way our brain works, but that doesn’t mean the brain isn’t powerful. It should be incumbent upon educators to offer the appropriate learning tools and teach the skills that truly enable a student to learn, no matter his process.

But our school district didn’t honor my request at first. Instead, there was a preliminary report to determine if testing was necessary. One reason cited for not initially providing testing was that my child was well supported at home. Our school district doesn’t have a lot of money. They need to avoid unnecessary costs where possible and testing is expensive. They set up barriers for parents. But how can a district do its job, that is, educate students, if issues impeding learning are not addressed?

I respect that the testing is time-consuming to already overworked district educators. Still, what concerns me as a parent and member of a wonderfully diverse district is that not all parents are aware of the ways learning differences can manifest and may feel uncomfortable about fighting for their child’s learning needs, especially when a language barrier exists. Not all parents are as pushy as I am.

Fortunately, in the end, and after several requests, our school district provided the testing (and a thorough analysis of it) which yielded valuable insights on how best to support my child’s learning.
I am keenly aware of the prevailing belief that brain differences such as ADHD are over-diagnosed, that especially boys simply cannot sit still and that there are some students who are less motivated in a school setting. Maybe some fidgety kids don’t have a diagnosable condition and some others need time to mature. Perhaps our education system is designed for uncommonly sedate children. I believe that some people are innately more ambitious than others and don’t require a parental push. Some other students absolutely do. All of this can be true, while still acknowledging that a student who exhibits problems focusing, whatever the root cause, needs to be supported. Immediately.

Whether or not a student has a diagnosis is irrelevant to the salient fact that our public education system is required to meet the needs and learning challenges of every student. To do so is to understand the specific challenge. And, for a struggling student to find success, teachers’ efforts need parental support at home.

One mother[3] told me how she makes a concerted effort at the beginning of each school year to explain her child’s specific learning challenges to each teacher. Her child is very bright, an avid reader and always scores exceptionally well on standardized tests. Every year, teachers assure her that they understand issues around her child’s ADHD diagnosis. But without fail, by the first quarter of every semester, her child becomes overwhelmed largely due to organizational challenges. Her child loses track of assignments, and if completed, fails to turn them in. The teachers infrequently accommodate this student’s needs by allotting extensions or any other assistance. Even after this mother explains her child’s diagnosis, the teachers insist that “requirements are very clearly outlined,” and “your child is capable of the work.” As good as our district teachers are, public schools have more workload than any person should be required to manage including providing accommodations. As a result, this mother’s student becomes depressed and experiences anxiety symptoms resulting from the stress of school, despite an obvious aptitude registered in testing, in-class discussions and for in-class essays. This mother has come to realize that despite all good intentions, most teachers and the public school system don’t understand ADHD or how to help a struggling student overcome challenges the unfocused brain presents.

Let’s be clear: a person who has challenges focusing is not doomed. In fact, these types of thinkers excel in many fields, often careers requiring creativity. Michael Phelps’s mother put him on a swim team to address his high energy and inability to focus. Exercise calmed him and helped him focus. Other well-known successes include Olympian Simone Biles, actor Woody Harrelson and businessman billionaire Richard Branson.

Why does the education system need to improve accommodations for atypical learners? Because students who struggle to focus and stay on-task often fall behind in their work. A student with slow processing speed is still thinking about the first idea a teacher presented while the class has moved on to other more complex ideas.[4] These students begin to feel lost and incapable when in fact they simply lack support and tools. They begin to believe they are “lazy” because this is what they hear from teachers and sometimes their uninformed parents. Feeling “dumb” in the classroom of peers can lead to low self-esteem and later depression and risk-taking behavior.

The education system shouldn’t damage those learners too inconvenient to serve.

Tips for parents of students with learning and focusing challenges:

  • Make sure the student has a workspace that is quiet, organized and with minimal distractions. Also, work with your child to block out time for homework each night. This is the best way to support a students’ education.
  • Insist on appropriate testing by your school district to determine the root of a student’s learning challenges. Or, have the testing done privately by a licensed professional if this is affordable. Seek recommendations from trusted professionals.
  • Seek out the many credible resources available online that provide valuable tips for students diagnosed with ADHD (such as taking mini-breaks between tasks, for example).
  • Advocate for your child by communicating with each teacher and more importantly, advise your child how to advocate for her own needs with her teachers.
  • Help your child to learn what she needs to do for herself to be successful in school. This may mean to take frequent breaks while working on homework, such as after one side of a worksheet is complete.
  • Consider getting a tutor who specializes in working with students who have issues focusing.
  • Always bring attention to your student’s strengths. If your student is a good soccer player, make sure to support this interest. If your student excels in art, consider enrollment in after school art classes.
  • Some private schools support students with learning styles that are not easily accommodated in a public school setting. If this is a financial possibility, consider this option as an investment in your child’s academic and psychological well being. However, not all private schools truly accommodate these differences.
  • Encourage physical activities the student truly enjoys.
  • Continue to learn about your child’s specific challenges from evidence based resources and accredited professionals.

[1] “Difficulties focusing” refers to diagnosed or undiagnosed learning differences or brain disorders that include symptoms similar to those experienced by those diagnosed with attention deficit hyperactivity disorder (ADHD), attention deficit disorder (ADD) and/or any other mental health that causes difficulties focusing or slow processing.

[2] You may find basic information about ADHD and ADD at http://www.mayoclinic.org/diseases-conditions/adhd/home/ovc-20196177

Proper evaluation and testing by a trained medical professional are required to confirm a diagnosis of ADD or ADHD.

There are many evidence-based resources available. We found the following resource, which contains a list of credible resources for further reading about helping a student manage challenges focusing:

Cheyette, Sarah, MD, Peter Johnson and Ben Cheyette, MD, PHD. ADHD & The Focused Mind: A Guide to Giving Your ADHD Child Focus, Discipline & Self-Confidence. Garden City, NJ: Square One Publisher, 2016.

[3] Names of parent and student are changed to protect privacy.

[4] For more information about processing speed differences as well as other learning differences: https://www.understood.org/en/learning-attention-issues/child-learning-disabilities/information-processing-issues/how-can-i-get-my-childs-teachers-to-recognize-processing-speed-as-a-real-issue

We appreciate any and all comments.


Honoring Mothers: Keep it Real.

 

Ronie Bell Woodlief and Gideon Hunt King’s wedding portrait, circa 1911.

The subtext of my father’s life and what bled into the four lives he created was the untimely death of his mother from blood poisoning sixteen days after his birth on Christmas Eve, 1931. From all accounts, which are too few, our grandmother was a firm but warm matriarch who managed her brood of nine surviving children with benign militancy and efficiency, keeping a clean and orderly house during the strained years of the Depression.

My siblings and I know Ronie Woodlief King through brief moments with three of our father’s sisters, one of whom was twelve at the time of her death, and from a single brown and white wedding photograph that rested on our piano throughout our childhood. Copies of this portrait, with its jagged creases, have been distributed to the many descendants of Ronie’s ten surviving children and now reside on walls, mantles and tables—maybe shoved in drawers—mostly in North Carolina but also across the country. We always said my oldest sister, Elin, shared a remarkable resemblance to Ronie. Her husband, my grandfather, passed only seven years after her and resembles my father. They share a sweet, youthful expression that belies their later heartbreak.

Despite never meeting this biological grandmother, her legacy profoundly marks us. From as early as I could remember, I saw an ineffable sadness in my father that I assumed was the grief in which my father’s early life was founded. Perhaps my earliest witness to his well of sadness was when I was about five and he began weeping while we watched Bambi together. In one narrative about my father’s first days, he lay crying in his bassinet in a soaked and soiled diaper until his oldest sister, Doris, who, at eighteen, was managing chores and caring for the youngest children still at home, could eventually care for him. It was then that neighbors, who had just lost their own baby, took the motherless infant into their home until the family could properly care for him. Later, this family adopted him, a truly charitable act during the Depression. Because I’m the youngest, what I know of my paternal (non-biological) grandmother, who took my father in and raised him, is that she made memorable pimento cheese and kept a clean home.

There is no other relationship that defines a person’s life the same way as that between mother and child. Adopted parents not excluded here, but in my father’s case, he and his descendants were indelibly marked by the loss of their biological mother. Maternal love is fierce. It’s why I always tell my children as I drop them off downtown or at a friend’s home, to always inform me when they change locations. In an emergency, no one will fight harder to find them than their mother.

Ronie’s impact on her youngest children and grandchildren is discoverable in what was created by her absence. My sisters and I have broadly speculated about what kind of parent or grandparent she would have been and believe she watches over all her children and their children. I imagine she likely had great pride managing home and children. I wonder if she was humored by her bright and funny children. I wonder about the moment she recognized her imminent death and that she was leaving behind an infant and young ones as well as older children. Heartbreakingly, she was robbed of the luxury to be annoyed by her two youngest boys, my father and his brother Julian, when they got into trouble or talked back or didn’t come home in time for supper. She was robbed of opportunities to catch her teenagers, Rachel, Mildred and Helen sneaking out with boys at night or rolling their eyes in teenage disgust behind her back. She didn’t get the chance to yell something at them that she’d later wish she could take back. I wonder, did she, or would she, have complained about all those damn kids?


The mothers that tell their stories in Behind the Wall have been pushed to limits no parent should ever experience: seeing their child suffer without being able to help them and sometimes watching their child walk the brink of life and death.


Elin and I have interviewed many mothers who have adult children living with serious mental illness. Similarly, these mothers have, at times been robbed of the typical things – of having “normal” moments, experiencing typical behaviors. It is not surprising that, with a similar power as Ronie’s legacy, the stories from mothers we interviewed, profoundly altered my perspective on mothering.

Each one of the mothers we interviewed stressed the importance of being supportive and emotionally available to their child, even when that child showed no reciprocation or appreciation, a common feature of the parenting dynamic, and especially common for adult and teenage children living with untreated mental illness. But we found it somewhat surprising that nearly every mother expressed regrets for some action or inaction. Many admitted having believed at one time or another that they caused the onset of their child’s illness, even though intellectually, they know brain disorders are not caused by bad parenting. These mothers wonder if they could have done something different when they were pregnant; maybe they should have disciplined more. Or less. They have a hard time freeing this false guilt.

These mothers in our Behind the Wall story collection, women like Esme, Tessa, Nathalie, Bianca and Rebecca, admit mistakes but also, through an oft-times harrowing parenting journey, have come to understand how little control they really have. They understand that parenting takes them for the ride and that they have less control in where the journey will take them as much as how they respond.

The mothers that tell their stories in Behind the Wall have been pushed to limits no parent should ever experience: seeing their child suffer without being able to help them and sometimes watching their child walk the brink of life and death. And then there is the grief of losing the child you once knew to a brain illness. Having been through all that, they can finally acknowledge they are remarkable mothers. They come to know that mothering cannot be perfect but mothers do make an impact, even in absence. As more than one mother expressed it, no one will take care of my child and advocate the way I do, and will.

When a child is unwell, often it’s the mother who has the power to keep things “real,” and maintain a sense normalcy while simultaneously pushing towards recovery. Bianca tells us that even when her son was very sick, living at home with her, unable to go to school or work, she tried to “keep it real” with him. Sometimes this meant yelling at him, getting angry with him like a mother would with any typical young man. For example, after coming home from work to find her house a mess, she said to him,

“You’re not broken! Pick it up! I work too hard to come home on my days off and clean up this house!” As soon as I raised my voice, which at the time didn’t seem like a bad thing to do even though now a part of me knows I shouldn’t yell… I felt guilty about getting angry. But on the other hand, “Pick up your dirty dishes!” He’s not broken. He’s tougher than he looks. (Behind the Wall: The True Story of Mental Illness as Told by Parents, 71).

For a mother who has spent years caring and advocating for an ill son, usually feeling as if she is screaming into the wind to get help for him, having a typical angry moment with him likely felt refreshing. But while getting angry or “losing it” isn’t ideal parenting, it happens. Tessa also admits to losing it on occasion with her son who binge drinks, gets into fights and has bouts of homelessness. But perhaps that’s the gift she is giving him – that she can show him anger yet he never doubts her fierce love or that she’ll be there for him.

Learning about the unfathomable struggles of mothers like those who have adult children living with mental illness, I’ve come to recognize that being able to treat a child like a “typical” child is a gift. The mothers in Behind the Wall parent on a whole different level than most and they are also far from typical. They are remarkable for their stamina, compassion and pragmatism. They understand a rule of life that took my grandmother’s legacy and my unfolding of it to learn: that we need to be grateful for each day given to us and particularly on those days when (especially) our children and loved ones are safe and healthy.

I will be the first to admit I don’t always feel gratitude for the parenting experience, particularly when a teen is ranting about something that pales in comparison to the struggles of, well, anything happening now in the world. Or when my child has been asked forty-six times to take out the now overflowing and reeking garbage. But underneath all of that, there is deep gratitude that I’m here. I may not be the best mother, but I am here. I’m the one that gets to advocate for my child and be on whatever that journey entails.

On this Mother’s Day, I honor mothers whose children have been unwell, in the past or currently, and who work hard to keep things “normal” or create a “new normal.” I honor my grandmother, Ronie, a woman I never knew, by keeping it real with my own kids. I honor mothers who act from a place of intention, make mistakes because nobody is perfect, and who understand the great fortune in each day we have with our children. I shall celebrate that I have been blessed with the luxury to sometimes become frustrated by my children and yet, they always know I am here for them.

 

As always, your comments and thoughts are welcome:


What happens around our table.

cran-3

When our extended family was seated around my grandparent’s thick, oak dining table—one given to our great-grand-father as debt payment during the Depression and that had been elongated by inserted leaves for the gathering— the discussion would inevitably escalate until one of the men slammed a fist on that table and stomped out of the room. Usually this was Pop, my mother’s father, disgusted over where the political discourse had gone. Incredulous that these people in his house were so damn backward thinking. Not infrequently, it was my own father who’d set him off. My father had a prickly relationship with Pop. On the other hand, Mama, my grandmother, loved everyone, brought out the best in all, including my father (plus he was Catholic!) and that was reciprocated. But she’d get pissed at theatrics. “Oh N.S.!” She’d hiss, always calling my grandfather by his initials. “For god’s sake!” She’d toss her napkin down and go through the swinging kitchen door to retrieve the desserts for the rest of us.

My father got into it with my uncles too. Later, my sisters, who are a decade older than me, battled it out with Pop, a white, upper class, college-educated man who’d lost his fortune in the second big market drop of the Depression in ‘34. Throughout adulthood, he’d had a rough ride with substances but finally committed to sobriety on the day his first grandchild, my sister, was born. Those drunken years deeply affected his family and were especially ugly for Mama, whose wifely duties were primarily to cover for him. My sisters, however, brazenly challenged Pop’s views on charged topics like civil rights and Middle East politics. They were living and attending nearby colleges and had fresh, compassionate, vibrant minds with perspectives my grandfather couldn’t possibly fathom. But despite fundamental differences in their belief systems, he relished their verbal sparring and witnessing his granddaughters passionately debate. He always believed that as they matured, they’d come around to see the world as he did. On that point, he was wrong about my sisters.

I was too young to get in the fray and, frankly, too interested in getting to the dessert course. Mama had a special technique for swirling cinnamon into her pumpkin pie. But the gentle, old-married- couple bickering, sometimes all-out barking, between my grandparents remains in my memory, as does the way Mama plied my father, her son-in-law, with the fig preserves he loved to eat for breakfast while patting his shoulder lovingly, even on those mornings after a blow-up with Pop. Food has always been currency in our family culture.

I’ve been thinking a lot about sitting around that big table with my uncle who knew it irked my disciplined, raised-on-nothing father when he ate an entire roast beef in one sitting, or made us hysterical with the jokes thirteen-year-olds tell that no polite person would repeat. Especially at the dinner table. Mama’s children, my mother and two uncles, often joked about the horrific events that had happened in that house with a raging alcoholic. Or when there was no money. And it was hilarious. These were flawed and scarred adults who, along with the kids, shared a love for one another despite the chaos and ancient familial grievances; we also shared in our love for Mama and her pound cake, apple pie and the chocolate sauce she taught all her granddaughters how to make (for the record, and contrary to my cousin Janet’s assertion, mine’s the best rendition). I can still hear the din from the television console and smell the sweet pipe smoke wafting from that tiny den, where my grandfather would plant himself in that squeaky leather recliner whether after storming out of a room or just because it was that time of the day. Or because Jeopardy! was on and we’d all compete to show him who was the most clever.

Of course, Mama and Pop are now gone. Many heated discussions amongst family members outlived them. Raised voices. Storming out of rooms. And likely there are more to come. At more recent family gatherings, cousins laugh about the differences; we roll our eyes, grateful we’ve even stayed connected (thank you Facebook). It goes unsaid that we share a deep love for our flawed grandparents who we are sure would love us as much today as ever, even though we casted votes for candidates they would certainly consider ghastly.

Mama had a way of cutting through it all with a sense of humor. I wish I had her talent. On this Thanksgiving, I am grateful my grandfather lived his later years sober, and that I now understand how difficult this was for him. I am grateful we have recipes. And most of all, loved ones to feed.

Here’s wishing that you too find that which surpasses the ugly discussions in life on this day of gratitude.

Happy Thanksgiving.

As always, we welcome your comments:

 


Mental health and Homelessness: address it early and broadly for a better community.

homeless-tents

The following was, in similar form, published in The Marin Independent Journal. We thought we’d also share it here.

In well-heeled Marin County, staggering homeless statistics are visibly apparent in downtown San Rafael, near where I live. And this problem exists in urban areas across the country. The 20 percent, or 263 persons who are chronically homeless, cost the public greatly in emergency room visits, interaction with law enforcement, and incarcerations. In-depth media coverage reports that providing permanent housing and supportive services significantly reduces these costs.

Not clearly articulated are effective, holistic, long-term preemptive approaches. Largely because many don’t think the solution involves us. Or does it?

We know a myriad of factors lead to homelessness: environmental, economic, cultural, and bad luck. Brain disorders—also known as mental illness and includes substance abuse—is a leading cause of chronic homelessness. I bet all Marin’s overpriced housing that the 37 percent of homeless who self-report that they live with a “disabling condition” are underrepresented. Many also have anosognosia, a feature of serious mental illness that interferes with one’s ability to have insight that they are unwell. These individuals don’t accept treatment.

Fortunately, our city’s multi-pronged, reactive approach for current homeless includes a Police Department specifically trained for crises created by a person’s delusional thinking. A myriad of effective city agencies also support the homeless and those with brain disorders to reach independence. Still, a preemptive societal paradigm can address homelessness caused by brain disorders while strengthening community wellness.

It starts with knowing facts about mental illness and fighting stigma. Brain disorders don’t discriminate along ethnic or socio-economic lines. Bad parenting doesn’t cause mental illness either. One in five across the globe is diagnosed annually and an estimated 10 to 14 million Americans live with serious mental illness. Fortunately, brain disorders are treatable. But stigma prevents many from seeking treatment, which is devastating since early treatment equals greater outcomes. Let’s address brain disorders before a person becomes a statistic.

It’s cliché, but nurturing the whole child truly is a progressive investment in the whole community. We know that those lacking education are more likely to become low-wage earners and therefore statistically more likely to live on the margins.

Fostering youth wellbeing is possible through evidence-based programs in public schools. Initiatives fostering a healthy, inclusive school community can make the difference between a student feeling safe in his environment versus one who dangerously isolates. Adequate funding ensures reasonable mental health counselor ratios and also provides paid counselor training, psychological screenings for students, and most importantly that families can receive mental health education and support when symptoms first emerge. Brain disorders are lifelong illnesses that, similar to diabetes, for example, require ongoing management; with treatment, one can live fully.

Other youth programs foster wellbeing too. Studies show sports and enrichment programs promote healthy self-esteem and a sense of accomplishment. Feeling connected to one’s community, whether through sports, or clubs or other enrichment is critically important to young people. Engagement in positive activities reduces anxiety and depression disorder symptoms—possibly delaying onset for those at risk. Art, music, and performance arts provide students with beneficial life skills and tools for expression, valuable for us all, but especially for those who develop brain disorders.

Meditation positively alters brain structure, improves concentration and increases self-awareness, happiness, and acceptance. Schools with mindfulness and meditation curriculum have reported tangible long-term results.

Voters can also effect change by learning about HR 2646, the Helping Families in Mental Health Crisis Act of 2015 and lobbying their Senator to pass it. Importantly, this bill addresses critical roadblocks parents encounter in getting mental health treatment for their child. Presidential Candidate Clinton has also outlined a comprehensive Mental Healthcare Agenda proposing changes needed to guide a loved one from serious untreated mental illness to recovery.

It is likely your city’s many agencies and faith organizations are doing incredible work. If the long-term health of your community matters to you, consider getting involved with a school, an agency, or church; financially support relevant programs serving youth enrichment and intervention. Get informed, lobby your Marin County Supervisor and US Senator and vote. Because this is a big picture and we’re all in it.

Your thoughts are always welcome:

 


Is he at risk for harming himself or others?

ER-Ambulance-VA

ER intake protocols and HIPAA laws create obstacles for healthcare advocates who know their loved one is experiencing a mental health crisis and psychosis that can result in devastating consequences.

Jean[1] did not delay taking her thirty-year-old son, Keith, a Medicaid patient, to a prestigious teaching hospital’s emergency room when he began experiencing heart attack symptoms. Jean, a lawyer, is the legal guardian of Keith, who lives with schizoaffective disorder that was diagnosed at age twenty. Jean knew Keith was likely experiencing a panic attack and the symptoms she was most concerned about were those of a mental illness relapse. Advocates like Jean, who have watched their loved one’s illness unfold, are intimately familiar with subtle and sometimes frightening warning signs of mental health relapse and what signifies the urgent need for an ER visit and hospital admission. On that day, Keith’s concerning symptoms included elevated mood, obsessive need to clean, racing heartbeat, and the most critical of all, incoherent speech.

Up until that ER visit, Keith had been managing his illness successfully for nearly four years with medication, therapy, sobriety and the support of his parents and loved ones. A recent college graduate, Keith teaches advanced math to high school students at an after-school clinic. He was recently promoted and had plans to move from his parents’ house into an apartment with a roommate. Stress can trigger a critical health event for those who live with chronic mental illness and Jean believes his increased responsibilities possibly caused his relapse.

The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided, or the fact that Keith is treated at the same hospital for his schizoaffective disorder.

Upon meeting the ER doctor, Jean detailed her son’s mental health symptoms she observed and knew to be concerning and his correlating health history. But the ER doctor focused on Keith’s cardiac symptoms, asking an incoherent Keith to explain how his heart felt. The doctor quickly ruled out cardiac arrest but never addressed the mental health symptoms despite Keith’s health history, the information his mother provided or the fact that Keith is treated at that same hospital for his schizoaffective disorder. “The ER doctor couldn’t write the discharge order fast enough,” Jean says. She laments the breakdown in what should be an integrated health system, one that includes protocols in which doctors are trained to address physical and mental health symptoms.

Jean recognized Keith’s mental health was rapidly deteriorating and his ER discharge meant the opportunity to get him committed for treatment in the hospital was denied. Jean then called Keith’s psychiatrist, who was on vacation, and left a message for the on-call doctor. Several hours passed before she received a return call. In the meantime, Jean also had left a message on the answering service at the clinic where her son is treated.

When her call was finally returned, the usual and important question was asked: “Is he suicidal? Is he homicidal?” Keith was not expressing suicidal ideation though he was incoherent and clearly exhibiting signs of psychosis. But Keith does have a history of hearing command voices—voices that instruct him to do dangerous, impulsive acts. Jean explained, “No, he’s not saying he’s going to kill himself. But his thinking is becoming more convoluted and his mood is more elevated.” Despite Keith’s history, he did not meet criteria for being at risk for self-harm or harming others and therefore Jean was informed, “Have him call us tomorrow and get an appointment at the clinic.”

Jean was finally able to make an appointment for Keith early the following morning and prepared for a long night of vigilance, which was especially worrisome since her husband was away on business. Knowing Keith’s history of psychotic thinking, especially that he experiences frightening command voices, scares Jean. She would need to check on him frequently throughout the night.

Jean recalls, “The rest is a blur. About 1:30 am, I saw blood in the hallway. I banged down the bathroom door and stopped the bleeding as best I could. I called 911 and got help from my neighbors who are nurses. Before I knew it, Keith was in the first of two surgeries.”

Keith will survive but it will be a long recovery process, both physically and mentally. He told his family he wants to live, get well, and return to work. He tells his parents he had no plan to kill himself. Keith has no memory of that night. “I don’t know why I did it,” he says.

Keith’s psychosis involved hearing voices commanding him to act, nearly resulting in his own death. His act, unlike a conventional suicide attempt in which the intent is a conscious and often planned effort to end one’s own life, was unplanned and impulsive. Keith’s brain was very ill, requiring urgent treatment to stabilize disordered thinking and keep him and others safe. Had Jean been successful in getting Keith hospitalized, he could have been protected from this impulsive act that will now require a longer recovery than had he been committed to treatment merely one day earlier.

Discouragingly, these types of experiences are not anomalies. Like most mental health advocates, best selling author, Pete Earley, became frustrated by the confusing and oft enervating mental health system when his son became ill. Earley’s very informative book, Crazy: A Father’s Search Through America’s Mental Health Madness, explores the healthcare and criminal justice system for those living with mental illness and for their advocates navigating the health and justice system. In Crazy, Earley tells a story of his frustrating effort to commit his son, Mike, whose mental health was deteriorating:

The doctor said: “Virginia law is very specific. Unless a patient is in imminent danger to himself or others, I cannot treat him unless he voluntarily agrees to be treated.” Before I could reply, he asked Mike: “Will you take medicines if I offer them to you?”

“No, I don’t believe in our poisons,” Mike said. “Can I leave now?”

“Yes,” the doctor answered without consulting me. Mike jumped off the patient’s table and hurried out the door. I started after him, but stopped and decided to try one last time to reason with the doctor.

“My son’s bipolar, he’s off his meds, he has a history of psychotic behavior. You’ve got to do something! He’s sick! Help him, please!”

He said: “Your son is an adult and while he is clearly acting odd, he has a right under the law to refuse treatment.”

“Then you take him home with you tonight!” I exclaimed.[2]

Mental health professionals are required to follow the criteria established for hospital admission. This criteria and HIPAA privacy laws restrict providers, often resulting in sub-par care and tragic consequences for people who live with mental illness. Advocates, mental healthcare providers and patients are frustrated with these laws and protocols that quite simply are more often harmful than helpful. 

No good comes from an untreated illness and after leaving the ER, Earley’s son was arrested and incarcerated for trespassing. Fortunately, Mike caused no physical harm to himself or others and the arrest prompted Earley’s investigation of the mental health and criminal justice system.

Virginia State Senator Creigh Deeds and his twenty-four-year-old son were not fortunate. Deeds’ emergency intake experience was similar to Jean’s and Earley’s but with horrifying consequences.[3] His son’s observable symptoms indicated he was becoming gravely ill. Like Jean and Earley, Deeds was unsuccessful getting his son committed. Deeds was told there was no bed available for his son. Later, Deeds’ son stabbed his father, leaving a lasting facial scar, and then he killed himself. Says Deeds about his experience with the medical system,

That makes absolutely no sense…An emergency room cannot turn away a person in cardiac arrest because the ER is full, a police officer does not wait to arrest a murder suspect or a bank robber if no jail space is identified. 

Deed’s experience prompted him to initiate changes in the emergency intake laws in his home state of Virginia. The changes include: 

  • Doubling the maximum duration of emergency custody orders to twelve hours and establish a framework to ensure private or state psychiatric beds are available for individuals who meet criteria for temporary detention.
  • Requiring State hospitals to accept individuals under temporary detention orders when private beds cannot be found. The law enforcement agency that executes an emergency custody order will be required to notify the local community services board, which serves as the public intake agency for mental health emergencies.
  • Establishing a state registry of acute psychiatric treatment beds available to provide real-time information for mental health workers.

Deeds acknowledges that changes to the intake law are “just the beginning” of the process the state must undergo to modernize and increase the effectiveness of the fragmented mental health system. His detractors believe more changes should have been implemented. But he accomplished what he’d identified while on his back in recovery from the physical injury his son inflicted. And these changes can be a model nationally. Deeds said, “The bill signed by Virginia Governor McAuliffe makes needed improvements to the emergency intake process. But there’s so much more to do.” As a father of a person with serious mental illness, Deeds is keenly aware of holes in the health care system. Says Deeds,

What happens after crisis intervention?…What if a person needs long-term care? What happens after the first 72 hours? Our system was deficient before, but a lot of deficiencies remain.[4]

Many parents interviewed for our Behind the Wall story collection share the experience that there was little information about, and questionable access to, post emergency commitment treatments or alternative resources when a person in crisis is denied hospitalization.  

Frustrating experiences like those of Jean, Earley and Deeds are shared by almost all parent/advocates of a loved one living with chronic mental illness. To effect change and remove dangerous roadblocks in the mental health system, Jean could, perhaps, pursue legal retribution against the medical professionals who failed her son despite having been provided Keith’s pertinent health history. But Jean notes that the hospital and mental health professionals followed an established protocol, even though that protocol was clearly flawed. Legally, they did nothing wrong. Instead, she will work for systemic change for Medicaid patients through NAMI (National Alliance on Mental Illness) to shape a more comprehensive diagnostic protocol, one that incorporates a case-by-case basis method of treatment for mental illness symptoms. She expects pushback but she is determined.

Changes that advocates like Jean, Deeds, and Earley are pushing are critical for the reparation of the broken system. It seems overwhelming. But there is hope. In June 2015, Representative Tim Murphy (R-PA) introduced H.R. 2646, the Helping Families in Mental Health Crisis Act of 2016, which was passed in July 2016 in the House. H.R. 2646 will now move to the Senate for approval. The changes proposed are substantive. The link to read the language of this bill and follow it as it moves through the Senate can be found here: https://www.congress.gov/bill/114th-congress/house-bill/2646

There is much work to be done in order to provide the best care for our loved ones who live and struggle with mental illness every day of their lives. If you are a caregiver or a person with mental illness we’d like to know your thoughts.


If you, or someone you know is thinking about suicide, please visit these sites and get help:

https://www.nimh.nih.gov/health/topics/suicide-prevention/index.shtml

http://www.suicidepreventionlifeline.org

http://www.webmd.com/schizophrenia/guide/schizophrenia-and-suicide



[1] All names have been changed to protect privacy.

[2] For more information about Pete Earley, his advocacy and to purchase his books, please go to his official website: http://www.peteearley.com/books/crazy/

[3] http://www.usnews.com/news/blogs/washington-whispers/2014/03/31/creigh-deeds-tells-sons-mental-health-horror-story

[4] http://www.roanoke.com/news/politics/creigh-deeds-new-mental-health-law-is-just-a-start/article_c028ba10-be76-11e3-b827-0017a43b2370.html

 


“Leaning in” to Motherhood. How it is for the rest of us.

O & GramNat 2

I love this picture of my mom with my daughter. A genuinely joyous moment.

Motherhood is beautiful. And messy, challenging, sometimes exhausting, and wickedly unpredictable. The moment a child first gazes into his mother’s eyes, or writes her first grade poem about all the reasons she loves her mother, diminishes most of the heartbreaking events—like the first snub a child experiences by a friend, or a child’s serious illness. Motherhood can be a roller coaster of emotions.

Sadly, some mothers don’t get many of the kind of moments that balance heartache.

This is why I take umbrage at the “Lean In” concept perpetuated by Sheryl Sandberg. Designing one’s own life is possible only to a degree; many of us recognize that motherhood and life throws curve balls. The suggestion that women can be mothers and “have it all” is simply preposterous unless we re-frame the definition of “having it all”. Something has to give way to have it all.

The concept of reframing “having it all”, and how to work toward it was introduced to me by some of the most amazing mothers I know—those women we interviewed for our story collection, Behind the Wall: The True Story of Mental Illness as Told by Parents.

This is not a rant against working mothers. We need women in the workforce and leadership positions. Personally, I prefer a female doctor. Ms. Sandberg is remarkable for what she has achieved while also raising a family. She has raised the bar for what women can achieve in the high tech world, one in which women have not felt welcomed. But her “Lean In” movement feels disingenuous.

DCP_0058When we plan to have a family, we envision our little family taking walks in nature (without whining about taking the walk), teaching our child to ride a bike, and celebrating graduations, proms, and weddings. As my sister, Elin, says, “That first time you gaze into your child’s eyes, you don’t think, ‘Someday this child will grow up and develop mental illness or substance use issues.’” But for parents whose children are atypical, these simple dreams aren’t always guaranteed. Parents whose children have special needs or serious mental illness, for example, often must make career and lifestyle choices to meet their child’s needs. Bianca, a mother we interviewed for Behind the Wall, had to choose a nursing position that provided a schedule that allowed her to be available for her son who lives with schizophrenia and sometimes cannot be left alone. Bianca’s other adult son sometimes works from home to be with his brother.

Dan considers himself fortunate to have been able to work at home while his daughter, who lives with schizophrenia, was recovering from a mental health crisis. Tessa, a mental health advocate and mother of an adult son with serious mental illness, is challenged to find a window of time to take a vacation because she never knows when a crisis may erupt. And I’m not even talking about the financial impact on parents of an adult child living with mental illness. Or the stress on a marriage.

But yet, these mothers we interviewed do have it all. All of them talk about gratitude for what they do have, how the experience of raising a child with a chronic illness has made them more empathic and compassionate. They are generous, spreading the message of their experience in an effort to help others. They also understand the concept of letting go of control and accepting what cannot be changed and fighting fiercely for what they can change. These mothers are caregivers and gladiators. They understand more about life than most and can hold a range of emotions with utter grace. Their gratitude is genuine, and deeply felt. And whether the rest of society recognizes it or not, by taking care of their own, they contribute in immeasurable ways to our society.

How about we lean in and embrace the hard work they do every day that often goes unrecognized.

This post is dedicated to those mothers. Happy Mother’s Day.

We always welcome your comments:


Understanding the Incomprehensible

Sneakers

Within a few weeks of starting middle school, a sixth-grader in my son’s class died by suicide. The principal, who was also new to that middle school, acted swiftly and appropriately to the crisis. His communications to the school community contained information about how to talk to one’s child about the event and how grief can manifest. His message was clear: It’s confusing to process this tragic event and important to allow time to talk it through. In addition, resources were provided to students who needed them while at school, and to parents during an evening information session. Thankfully, ours is a supportive community.

Naturally, the school community was shocked. Death by suicide in the US is statistically more common in teens (ages 15-24), ranking as the second most common cause of death. The perception seems to be that suicide is low for adolescents (ages 10-14), but sadly, according to the CDC, it ranks as the third most common cause of death.[1] These statistics are horrific.

The student from our community was also so young; begging the question, “How could a person who has lived barely twelve years have already given up?” Parents wanted to know more about the circumstances of this student’s life and mental health history, though this was thankfully kept mostly private. Maybe knowing some specifics could explain something we all had difficulty understanding and could prevent it from happening again. Secretly, we searched for a factor leading up to this tragedy that is not shared by our child or existing in our family life to assure us this tragic event was an anomaly. One can become selfish when it comes to our own. We look for the “Oh, I get it” moment that allows us to say, “See? There’s the reason.” But there really is no acceptable explanation. It’s simply heartbreaking.

What may cause a person to attempt suicide, particularly those within the 10 – 14 age group, is the impulsiveness that comes with an emerging or untreated brain disorder. Stress is a significant factor in triggering brain disorders that disrupt brain connectivity. Those living with brain disorders often have a lower stress threshold. But of course, we will never know the specifics of this student, nor should we unless the family wanted it so. I’m grateful that (from what I could tell) the family’s privacy was respected, without stifling important discussion.

Because of this event’s emotional repercussions and the concern over the copycat phenomenon common with teen suicide, education about depression and suicidal ideation that is commonly woven into high school curriculum was made age-appropriate and brought into this middle school. Students were taught how to recognize when a friend may need support or intervention and where to get it. Students were taught that if someone expresses he wants to “give up” or says something like, “what’s the point,” a responsible friend should seek advice from a trusting adult. Getting support for your friend, students were told, is not betrayal. These are important messages.

My son shared a class with the student who died, though they were not friends. Still, my son was affected by the event. In the days and weeks that followed, I remained open to difficult discussions about death and suicide and repeated the message to my children about the importance of identifying when a friend may require intervention and how to convey to a person who seems to be in distress that they matter and that resources exist.

But at some point, my son had heard about copycat suicides and worried that one of his friends might attempt suicide. He asked, “What if I cannot stop my friend from doing the same thing? What if he doesn’t listen to me?”

Oh my. In the interest of creating a safe and supportive community, had we burdened these young kids – barely out of elementary school – into thinking it was their responsibility to protect others? Were we setting ourselves and our children up to feel responsible for a person’s death by suicide?

The anguish in my son’s voice over feelings of helplessness and the recognition of his ultimate inability to protect his friends suggested I had placed undue burden. His sorrow was crushing. And familiar. All parents know this wrenching feeling of not being able to control all the levers and conditions of our child’s life. He was feeling that, though for his friends and loved ones.


It is not uncommon for suicidal plans to be disrupted by another’s simple act of acknowledgment and caring.


There is no question in my mind that thoughtfully engaging with a person who seems to be in emotional distress and encouraging him to seek help is more beneficial than ignoring odd behaviors and hoping for the best. Acknowledging a person who may be slipping into darkness can make all the difference for them in getting help or not; a person may not even know how unwell he has become or that there are resources to help him. It is not uncommon for suicidal plans to be disrupted by another’s simple act of acknowledgment and caring.

But when a person seems unable to get well, or more tragically, dies by suicide, it doesn’t mean that someone is to blame. This seems obvious, but the parent, loved one or friend of a person who dies by suicide always wonders if they could have done something differently. It’s even a fleeting thought for parents or loved ones who know on a rational level that they have provided all the support and resources within their grasp. It’s always there; the thought, I could have saved him.

There were many gems of advice provided by the parents my sister, Elin Widdifield, and I interviewed for our Behind the Wall project. These parents have adult children who live with serious mental illness and all of them have genuine fears about their child being at risk for self-harm or behaviors that make them vulnerable.[2] Because death by suicide is common for those who live with serious mental illness, these parents are confronted by its reality. A parent once told us, that if you’ve done the best you can for your child, “You can’t blame yourself for their death or their success. There is only so much control you have.”

In fact, that was one of the most common and best bits of advice. There is only so much control you have. Accepting this fact is healing. A loved one can provide ample support and resources but a person must take the mantle to get better. Or not.

Still, witnessing risky behaviors of a child who has an untreated mental illness is worse than having your heart ripped out through your throat. Many parents share the sentiment that they’d rather feel the pain themselves than watch their child suffer. I can tell my child how to ask for help, and-remember-I-told-you-don’t-do-drugs, but out of my sight, I have no control. A person who has delusional thinking isn’t going to make good choices no matter how much he promised when mentally well, or sober or both. It doesn’t mean we are bad parents, loved ones, or friends.

I told my son that being a good friend or loved one means never giving up. But this does not mean a person has to endure abuse from others (another topic) or take responsibility for another’s actions. I will never give up on the people I love. I learned from my sisters and mentors, there is a solution to every problem and that’s what I tell my own children. And when he encounters the sadness that life brings, he will carry it, and his parents will stand beside him every step of the way.

But what I cannot do is solve his problems. I cannot make bad things go away. It’s simply not possible. Not realistic.

There but for the grace of god go I.


Suicide deaths ARE preventable. Here are online resources for suicide prevention:

http://www.yspp.org

http://www2.aap.org/advocacy/childhealthmonth/prevteensuicide.htm

http://suicideprevention.nv.gov/Youth/WhatYouCanDo/

http://www.helpguide.org/articles/suicide-prevention/suicide-prevention-helping-someone-who-is-suicidal.htm


 

[1] For more information about statistics regarding death by violence and death by suicide, please refer to the website for the Centers for Disease Control (CDC): http://www.cdc.gov/violenceprevention/suicide/statistics

[2] According to United States Department of Health and Human Services, “… people with severe mental illnesses are over 10 times more likely to be victims of violent crime than the general population.” For important information about Mental Health Myths and Facts, see http://www.mentalhealth.gov/basics/myths-facts.

 


Grief: The Path to Hope and Recovery

By Elin Widdifield

I’m grieving. I lost my son. Somewhere he’s still there…It’s okay to let yourself grieve. It’s going to be a lifelong process.
– Bianca, the mother of a 25 year-old son who lives with schizophrenia.

 Jennifer was self-disciplined and structured. Now we had a child who couldn’t cope in school. That was like having a different child. It was as if one day we opened the door to find someone else had moved in.
Esme, the mother of a 20-year-old daughter diagnosed with
borderline personality disorder, bipolar disorder, and substance use disorder.

 

Throughout our interviewing process for Behind the Wall, and as we continue talking with parents we meet as we travel around the country to talk about our story collection, we have found that the same themes continue to bubble up. We expected parents to talk about problems with HIPAA laws, lack of access to evidence-based care, complexities of a dual diagnosis, medications, and the court system…and we were right. But one of the most poignant and recurring themes continues to be the subject of grief.

When a loved one becomes ill, each family member experiences grief, including the person living with a mental illness. For example, parents grieve over the temporary and permanent cognitive and behavioral changes in their child and the requirement that parent and child revise expectations for short and long-term educational, professional, and personal opportunities. Siblings grieve over changes in personality and abilities that alter relationships; family focus often shifts to the needs of the ill child, which can create a sense of loss for other children and alter a family’s dynamic. A person who lives with mental illness grieves the loss of himself and what is lost cognitively, such as the ability to read books or sit through movies.

All family members may experience isolation from their community due to stigma and because outsiders often can’t comprehend, or choose not to learn about the experience of having a loved one living with mental illness. The chaos and confusion that goes on behind the walls in these homes is often undisclosed to friends, neighbors, and even to the mental health care providers, leading to more isolation.

The Merriam-Webster dictionary defines Grief in part as the following:
A:  deep and poignant distress caused by or as if by bereavement
B:  a cause of such suffering

Parents of adult children living with serious mental illness likely identify with poignant distress and suffering. There is no deeper emotional suffering than that of losing a child—even just parts of that child altered by illness either temporarily or permanently.

When we began interviewing parents for our story collection, the first question we asked parents was to tell us about their child as an infant through adolescence. We wanted to know about their child’s talents, their personality, and later interests and friends. We wanted to see if parents had a library of good memories in the midst of the chaos that defines living with a loved one suffering with a brain disorder. Most all parents brightened while talking about their child’s early years. There were fond memories of family vacations, special talents, and achievements in sports or academics. One parent relayed a story about how charming her son was from an early age— and still can be when he is stable, and compliant with his treatment.

Seeing our newborn’s face, we imagine the possibilities, hopes and dreams. We think, here’s a clean slate! And we plan to do everything right for this pure, beautiful, gift. This little place in our heart grows with these imaginings of who he will become and how will he change our world, and how much love we will always have for him. Gazing into the tiny bit of perfection created by what can only be miracle, we don’t imagine the illness that comes later and we tell ourselves, we will protect. Always. To a new baby, no parent ever says, “I think you’re going to have mental illness and abuse substances.”1

When my son, Joseph, was diagnosed with a mental illness, my love for him never wavered but my inner world, the place that held the idea of who he was as well as all the imaginings and dreams of who he would become, collapsed in despair. I found myself isolating from others, giving up activities I had once enjoyed, and lying on the couch, reading madly to find out what I could do to ‘fix’ things. I became paralyzed with the fear of worst- case scenarios. I overate cookies-and-cream flavored ice cream to the point where I still cannot bear to look at that flavor. My husband, also in deep pain, grieved differently. He tried to soldier on, busied himself with work and suggested ways to ‘Fix It’. Our son who lives with mental illness felt great loss too. One day he asked, “What has happened to me? I’m not the same person anymore.” Meanwhile, our older son began to pull away from the confusion. We were all in a sad funk, each feeling a loss, and each in a world of pain.

Fortunately, an astute therapist pointed out that we were experiencing grief. She explained to us that there was hope, and hope leads to recovery—magic words for a suffering family. But there was work to be done—addressing the grief was the first step.

The journey was jagged.

Everyone’s experience with grief is personal; my husband’s method of coping was to be busy with work, I isolated and become obsessive, and our elder son pulled away. There is no judgment for how one does grieve, but working through it is critical for moving forward, and having hope in one’s life again.

Joseph, diagnosed with mental illness with co-occurring substance use disorder, got help through ACT.2 The Assertive Community Treatment team helped him to address head-on his mental illness, medication, and sobriety head-on; the team counseled on how to reintegrate into the community and learn healthy habits for his physical health. It is a day-to-day struggle for people with mental illness to live a structured, healthy life in order to stay out of the hospital. He needed non-judgmental support from loved ones and we needed to work hard to learn about the illness and how best to support him. As he began to work toward these goals, and his health improved, Joseph’s grief was greatly reduced and hope returned. Our whole family began feeling hope. My older son felt he was getting his brother back and I no longer felt gripped by feelings loss and fear. Most importantly, time with family became enjoyable again, as it was before Joseph’s illness.

Elin walking on path with sisters

Support from my sisters eased the grieving process.

I worked through my grief with therapy. I found meditation. I engaged in quiet activities that I enjoy. I spent many hours of walking in the woods, kayaking, and talking with other parents. Through this process, I rebuilt that place in my heart that holds my hopes and imaginings for him—the same place that holds dearly to memories of Joseph as a smart and funny little boy. We have home movies of him playing sports, dancing happily, and saying funny things. I began to feel gratitude.

One would imagine that re-visiting memories would make my loss feel unbearable, and it did for a while. But it began to work for me. My husband was a few steps behind me in his process, but he also re-visited all our wonderful memories of who our son once was while we also both began to get to know this new person who was emerging healthy, talented, and smart—a young man in Recovery!

Recently I spoke to a gracious group of mental health care professionals in Winston-Salem, NC, at Novant Outpatient Behavioral Health Hospital. I was happy to learn that they are addressing grief for each family member. I believe it is the job of mental health care providers to help families through this process. When we are grieving, we cannot make good decisions for ourselves because we are in a cloud of emotions, we are often isolated, and everything feels confusing, and dark.

Telling our stories, and hearing the stories of others, greatly reduces our feelings of isolation, and helps us to heal and move forward. As a co-facilitator of the NAMI (National Alliance on Mental Illness) Family-to-Family class, I know that learning about the latest research for brain disorders, and sitting in a room full of people who are learning to cope with a ‘new normal’ as they navigate this ragged road, is also healing and informative.

If you are a person who has a mental illness, or if you have a loved one who is struggling, find an astute mental health care professional who will help you to address your grief, and loss. It is a painful journey, and for me, not unlike having shards of glass stuck in my gut day after day. But one must walk through Grief to get to Hope, and eventually to Recovery.


1 Up to 60% of people who have a mental illness, also have co-occurring substance use disorder. www.nami.org

2 ACT, Assertive Community Treatment is community -based treatment for people with serious mental illness, and often with co-occurring substance use disorder. ACT is a team of professionals who help people to reintegrate into the community by living semi-independently, engaging in everyday tasks, to gain job skills, or attend school. www.dualdiagnosis.org

 

Comments always appreciated!