Is there a family trait more common than keeping secrets?

These secrets can have hidden costs. When we leave a place or person behind, we don’t know what becomes of them. We miss out. We cut them out of our familial history.

These secrets can even make us miss the entire life of a loved one—a burrowed family secret, not passed down, and brought to light only in late harvest.

That’s one lesson of the most thought-provoking California story I’ve come across in years. It’s told with heart and heightened imagination by David Mas Masumoto, the Central Valley writer and farmer, in his recent memoir Secret Harvests.

The book ranges widely but at its center is Shizuko Sugimoto.

She was the sister of Masumoto’s mother. But he didn’t know she even existed until about a decade ago, when a Fresno funeral home called to ask if Sugimoto, who was 90 and appeared near death, was related.

He was skeptical about the call at first—could this be a scam?—but he went to meet her and began talking with family members about her. In the process, he pieced together many elements of the life of an extraordinary California woman whose very existence had been a family secret.

Sugimoto was born in Fowler, California in October 1919, daughter of a family of farmworkers of Japanese heritage. At age 5, she contracted meningitis, which attacked her brain. No one called a doctor. No one knew what to do.

The illness left Sugimoto with an intellectual disability. She would never again complete a full sentence or thought. In the recollections of Masumoto’s family, she was described as “confused, fuzzy, irritable, and difficult to comfort, traits that will linger for a lifetime.”

She was 23 in 1942, when the family was ordered to evacuate to Arizona as part of the government’s incarceration of Japanese Americans. The burdens on the family were immense—it was just before the harvest, and they were being evicted from their rented home. How could they survive in a concentration camp?

The father went to Arizona, and died within a month. But Sugimoto remained in California. A few days before the evacuation, the family turned her over to a county sheriff, making her a “ward of the state.”

It’s believed that Sugimoto lived in various institutions from 1942 until the early 1950s. It’s unclear where. Masumoto learned that some relatives had spent years searching for her after World War II, and may even have visited her at a facility in Porterville. The story goes that once they found her and visited her, they believed that she was doing better than she might have done with her own family, who were trying to rebuild their lives after incarceration. So they left her where she was, and resolved not to speak of her again.

Other family members who had known Sugimoto were left to assume she had died. But she had lived, moving between institutions for decades. Masumoto would learn that she spent several years, until the 1970s, at the DeWitt State Hospital in the foothills above Sacramento. For a time, she was at a Fresno-area facility only a few miles from his farm in unincorporated Del Rey.

Sugimoto had been living at the Golden Cross nursing home for 13 years when Masumoto received the call asking if he was the relative of a person whose existence was unknown to him.

“How do you tell your family that after seventy years, you ‘found’ their sister and aunt?” he writes. “None of us had seen her since 1942. No one knew anything about her. There are no photographs of her existence.”

When he went to see her, she had suffered a stroke and was in bed, dying.

“I am struck by her size, small and compact, folded in a fetal position. She appears comfortable, breathing gently as if asleep. She lays motionless and alone, real and authentic. This is not historical research conducted safely behind words, photographs and artifacts. I touch her warm hand, feel a bony shoulder, hear a soft sigh as she moves her head to one side. She embodies all that is wrong and right in the world, the sorrow and joy of life, the guilt and happiness of family. She delivers light to our dark past; she complicates and completes us.”

But that was not the end of the story. Masumoto got to know the staff that cared for Sugi, as they called his aunt. In the book, he praises them, and gives his due to the system that kept her alive into her 90s. The caregivers tell him of her feistiness, how she loves to tease and tickle them, how she adores music and dancing, how she wanders the halls, and how she drinks her morning coffee and then throws the cup behind her.

“She is a real character,” he writes. “Sugi has a home here. … Her disability is not a punishment and not a cure… She refuses to believe anything is wrong with her.”

As Masumoto and his family were making plans for her funeral, one day, amazingly, Sugimoto woke up. She returned to moving through the halls. She playfully kicked Masumoto in the leg. “Shizuko came to life and visits us,” he writes. “She is a living ancestor, awakened to illuminate. She no longer lives in the shadows and now steps into the light of family and our history.”

When she later died, shortly before her 94th birthday, she was the oldest client at the Central Valley Regional Center. At her funeral, the family passed out plastic cups. Mourners pretended to sip coffee, and then tossed the cups blindly behind them.

Sugimoto was interred in the family mausoleum, and Masumoto dedicated a bench at the Fresno Fairgrounds—she loved the Big Fresno Fair—to her and “those with disabilities and special needs who were separated from their families” during the World War II relocation and incarceration of Japanese Americans.

When I spoke with Masumoto recently, he talked about Sugimoto’s story, and the roles racism and discrimination against people with disabilities played in it. But we also talked about secrets, especially in families, and all that we miss when we keep them.

“I now force myself not to look away,” he said, adding: “Memories can and should change.”

The post What’s the Cost of a Family Secret? appeared first on Zócalo Public Square.

She is telling me this because I am her primary care doctor. As part of a routine check-up, I want to know if her arthritis is affecting her daily life. When patients become socially withdrawn, their health deteriorates further. She wants a reality check. Her arthritis never limited her but, she asks, should she avoid these places, be this afraid of terrorism, even if it’s affecting her health and happiness?

Anna is an example of the ‘‘terrorism burden”: the adverse health effects—ranging from loss of well-being or security to injury, illness, or death—caused by terrorism and national terrorism policies.

Terrorism causes public fear by definition and by intent. Our response to terrorism can harm our health, too. Watching the unrelenting replays of the September 11 attacks on television worsened psychological distress and even increased the risk of post-traumatic stress disorder. After every terrorist attack, pediatricians warn parents to limit their child’s exposure to television news on the topic.

But beyond what’s clinically diagnosed, our counterterrorism policies can also create other unintended psychological harm. And it is the most vulnerable people among us who feel these effects most deeply.

After September 11, 2001, the Department of Homeland Security ran its well-intentioned, color-coded system alerting the public to the risk of terrorist attack. For 10 years, the terror alert level remained at yellow, an elevated risk of attack. It’s not surprising that, a year after the attacks on the World Trade Center and Pentagon, more than 10 percent of Americans were still changing their behaviors from fear of terrorism—limiting their outside activities, use of public transportation, and attendance at public events. The constant reminder about the threat of terrorism impaired our sense of security, a critical part of one’s overall health.

Unremitting warnings of terrorism harmed people from some walks of life more than others. Surveys found that persons with disabilities were more anxious about their personal risk from terrorism than were persons without disabilities. One survey that my research team worked on in 2004, three years after September 11, found that having a physical disability increased the likelihood among Los Angeles residents of frequently avoiding activities from fear of terrorism. The study also found that, compared to non-Latino whites, African-Americans were eight times more likely to frequently avoid activities from fear of terrorism; Latinos were seven times more likely.

We looked for reasons to explain this disparity. Could differences in the prevalence of psychological anxiety lead to different reactions? Or might lower educational attainment make it harder to understand the real risk, thereby leading some people to overreact? Nope. Our results did not change after statistically accounting for differences in education, income, anxiety level, immigration status, and other factors. Other researchers have found similar results across America.

Psychological theories such as R.W. Rogers’ protection motivation theory and Kim Witte’s extended parallel process model may explain our results. According to these theories, people will change their behaviors to protect themselves and reduce their fears based on their appraisals of both the threat and their abilities to cope with the threat. The threat appraisal includes perceptions of the probability of harm. The coping appraisal assesses their perceived self-efficacy to cope with an attack.

These theories help me understand my patient Anna’s avoidance behavior. Anna is less able to protect herself in a terrorist attack, like the attack in San Bernardino, because she can’t run away or hide as easily as someone without a mobility impairment. No matter how well prepared she is for any disaster, she faces greater risk of harm for this reason. Terror alerts may be nationwide, but people assess their vulnerability to terrorism and disasters—and their ability to recover—on a very personal level. Then they adapt their behaviors to protect themselves from harm and to reduce their fears. One possible reason minority groups take measures to avoid terrorism is they may not trust they will be treated equally after a disaster, as in Hurricane Katrina.

Of course, trying to protect yourself from harm is a good thing. But avoiding going to a restaurant with your friends is not the best way to do this. When people feel at risk, they may make bad choices or make good choices. It’s a bad choice to stay at home all the time, but a good choice to learn how to protect yourself in the event of a disaster or mass shooting. In my research, the same vulnerable groups who are avoiding public places after a terrorist attack are also buying emergency supplies and making disaster plans immediately after disasters and terrorist events. People who believe they are particularly vulnerable to a risk are motivated to reduce it. We should be guiding people to the right choices.

I am tempted to reassure Anna that her risk of meeting a terrorist is vanishingly small, but I know this won’t really help her. It could make her feel unheard. What I can do is recommend actions, in detail, that will actually reduce her risk in a risky world. This is one of the first lessons of what is called risk communications—the study of how we should communicate about risk in ways that promote healthy responses.

She should talk with a close colleague at work to enlist her help should she need to evacuate quickly. She should watch the online videos giving detailed instructions about “Run, Hide, Fight” with a particular focus on the details in the Hide and Run parts. (This is the approach recommended by the Department of Homeland Security and other federal agencies, based on a small body of research showing that immediate evacuation can save lives. It is also controversial. But having a plan and training may be better than inaction.) Anna can view the video and decide if it will work for her. I recommend the Ready Houston video on YouTube, despite the terror of watching it.

She should ask her boss to make a company-wide drill out of these recommendations, or at least practice it herself in her head—to “train your brain” as Amanda Ripley suggests in her excellent book, The Unthinkable. And she should keep at least a week’s worth of water, food, and her prescription medicines for the inevitable earthquake. As her doctor, I can give her detailed directions about how to get an extra week’s worth of medicine, which is only allowed by her health insurance plan if she makes the requests in the right way.

The recent terrorist attacks are an opportunity to improve our preparedness for emergencies and disasters. Let’s not miss this opportunity. For all the media attention to the San Bernardino attacks, I have not seen anything on how to promote our safety and well-being in the practical ways I describe.

All businesses should actively drill “Run, Hide, Fight.” I like Ripley’s idea of encouraging participation in drills by having the official meeting spot be a coffee shop on the next block where the boss buys everyone a coffee. Other doctors and pharmacists can proactively advise patients on getting and storing a week’s worth of medicine for disasters. Rather than using these attacks as moments to remind ourselves what we should be scared of, we can make these events teachable moments that build a greater culture of preparedness across the nation.

The post Obsessing About Terrorism Is Bad for Your Mental Health appeared first on Zócalo Public Square.

On this morning, my routine was upended. The noise of the kids filing in echoed through the bleachers; the PA system squealed once or twice. When quiet kids took the microphone it was hard to hear them. All of that was normal, yet I hadn’t really noticed it before. Now, I was hearing the world differently, imagining it through the ears—and the hearing aids—of Alex, who might someday be a student here. Having a deaf child, I realized, was going to teach me to listen.

Once I started listening, I started to learn. Research came naturally—I am a journalist—and became my coping mechanism. Through books, conferences, and conversations with as many experts as possible, I began to understand the power of sound—how the speech of parents and caregivers and teachers shapes a child’s spoken language; and then, how a child’s own spoken language—the rhythm and the rate of it—helps that child learn to read. I also saw and heard more clearly the troublesome effects of sound’s alter ego, noise—the unwanted, unlovely cacophony of our industrial world, or the magnified, amplified effect of too many people talking, or music that’s too loud or intrusive.

What struck me most was that sound doesn’t matter any less for hearing children like my older boys. From the minute a child is born, every experience that child has is being etched into his or her brain. Sound, or its absence, is part of that experience. Neurons make connections with each other, or don’t; the auditory system develops or doesn’t, based on experience. Sound is essential for anyone learning to speak and to listen—and that includes every hearing child, as well as every deaf and hard of hearing child using hearing aids or cochlear implants, which send sound signals directly to the auditory nerve.

Before we figured out that Alex couldn’t hear, he was using every visual cue available—smiles and frowns, waving hands, pointing fingers—in order to make sense of his world. For a time, he compensated well enough to fool us into thinking he could hear, but he couldn’t keep up once his peers started talking.

Both the quantity and the quality of the words children hear in their first years affect language development. Over time, as kids have more experience listening, the auditory processing in their brains speeds up and becomes more efficient. The repetition, rhythm, and rhyme in nursery rhymes, poetry, music and even Dr. Seuss help children learn language by getting them to listen for patterns. That listening practice then forges the neural networks necessary for reading because an ability to make sense of what you hear and break speech into syllables and phonemes is the foundation of reading. How a child reacts to sound—meaning how efficiently his or her brain processes it—on the first day of kindergarten correlates to how many words per minute that child will read in fourth grade. It turns out that problems with processing sound are at the heart of the majority of reading problems. On the other hand, children who read well have built strong brain circuits connecting hearing, vision, and language.

It’s important to note that if a deaf child is going to grow up using sign language, he does not need sound in order to develop that language because his world is visual. Sign language, if it’s a first language, gets laid down in the brain in the same areas as spoken language does in those who learn to speak. Reading, however, is another question. Native signers must learn to read in what to them is a second language, and deaf students have historically struggled with reading in numbers far greater than their hearing peers.

When Alex did eventually attend school with his brothers, he was using a hearing aid in one ear and a cochlear implant in the other. It turned out that small strategies designed to improve the classroom environment for him benefitted everyone. After we taught Alex to politely ask his friends to speak up or repeat themselves, circle time was suddenly full of children using their manners to do the same because no one else could hear the shy kids who mostly whispered. None of the children in his first grade classroom heard the math assignment because the air conditioner sounded like a standing mixer. Swapping out the old equipment helped 20 kids, not one. Ditto for adding carpeting and curtains, and covering the metal legs of chairs. According to the Acoustical Society of America, noise levels in many classrooms are loud enough that those with normal hearing can hear only 75 percent of words read from a list.

Something else happened, too. Alex’s needs subtly shifted some of the group dynamics, encouraging a new level of attention. Hearing people don’t have to look at someone who’s talking to take in what they say, but deaf people do. Although Alex’s hearing equipment does allow him to hear without looking, he still benefits from visual cues, and in his classes we applied a lesson from American Sign Language about the need for eye contact. The lovely thing about looking at someone when that person is speaking is that instead of just appearing to pay attention, you probably actually are.

Paying attention matters on a deeper level. Children’s ability to pay attention matures over time just as their language does. And like language, selective attention—the kind kids need in the classroom—is affected by experience. Practice and you get better at it. Neuroscientists have shown that when children pay attention they learn. Focusing on something specific—one voice over another or your book instead of your friend—results in a bigger response in the brain measured in electrical activity even in children as young as three. That bigger response helps build networks between neurons and trains the brain to learn.

Alex is now in sixth grade at that same school. I can’t change the acoustics of the cafeteria, but in the classroom, we still begin every school year reminding his teachers to stop and listen. We encourage them to amplify sound by, for instance, remembering to face students instead of the board and to damp down noise by consistently keeping hallway doors shut and the like.

At home, the boys used to do homework at the kitchen table while I cooked dinner and occasionally stepped in to quiz them or offer suggestions, often without leaving whatever was simmering on the stove. I no longer do it that way. I turn off the radio and hush my older sons then I sit next to Alex (or whichever boy needs help) and give him my full attention. He learns the material better, and I learn more about him. I wish I had never done it any other way.

The post Raising a Deaf Child Makes the World Sound Different appeared first on Zócalo Public Square.

When Mesa Public Schools special education director Jan Cawthorne began her career years ago, children with disabilities were separated from other students—put in classes at the back of the school, or somewhere else hidden away. A sea change has occurred since then in the shift toward inclusive practices—the result of research showing that kids with autism and other disabilities benefit from being part of a school community.

Even as people are more aware of autism in general, diagnosis remains difficult, said Arizona State University educational psychologist Erin Rotheram-Fuller. There are more parent networks, and more people trained in both diagnosing and supporting these kids. But for parents, it’s still a challenge to find first a diagnostician and then a provider who can help their children.

The average age of diagnosis, said Southwest Autism Research & Resource Center (SARRC) president and CEO Daniel Openden, is between 11 months and 4 years. But age 4 is still too late. “We argue in this field about just about everything,” said Openden. “But the one issue that uniformly everyone agrees on is you’ve got to diagnose kids as early as possible and get them treatment as early as possible.” The preschool at SARRC starts teaching children at 18 months. Openden and SARRC combine early intervention with a commitment to inclusion: More than half of the preschool’s students are not diagnosed with autism. SARRC is also working to intervene as early as six months by recruiting the younger siblings of already-diagnosed children, who have a greater risk of sharing the diagnosis.

Arizona Republic education reporter Cathryn Creno, the evening’s moderator, asked Rotheram-Fuller about her research showing that inclusion—in which kids with autism are integrated in general education classrooms—also benefits typically developing kids.

Rotheram-Fuller said that inclusion isn’t perfect: Conflicts happen when teachers and students aren’t prepared. But typically developing kids become more tolerant and understanding when they are in classrooms with kids with autism—and those kids, in turn, get exposed to the modeling of social behaviors they need to learn.

Cawthorne said that her district—which works to put students with disabilities in general education classrooms as much as possible—has found that bringing a parent into class to talk about his or her child’s disability with students has been very helpful in avoiding conflicts.

Why, Creno asked the panelists, is it so important to educate kids with autism and typically developing kids together?

“For us, the heart of autism is a social disorder,” said Openden. “So it never made sense to take kids who are socially disordered and put them all together.” Plus, kids with autism leave school and go into the real world—where most of the people they meet and interact with will not be people with autism.

Creno asked the panelists what it takes to be the best possible teacher for students with autism.

Rotheram-Fuller said that learning about autism is important—but so is being flexible and setting a positive tone. Teachers need to let students know that everyone in the classroom is important and respected, and that they’re all going to do whatever it takes to make sure everyone succeeds.

Cawthorne said that when she hires teachers, the most important skill she looks for is the ability to assess a situation, problem-solve through it, and use one’s own resources—or seek outside resources—for help. The teachers who have trouble, she said, are the ones who give up easily. And while teachers should be flexible, they also need to teach children with autism to adapt to their environment and learn to be flexible if they’re going to succeed.

Before turning to the audience for the question-and-answer session, Creno asked the panelists what they think Arizona needs from its policymakers to support kids with disabilities.

“It always comes down to money,” said Cawthorne.

We need “really good school leaders,” said Openden, who are committed to educating typically developing students and students with disabilities.

And children have to be taught “to be good citizens,” said Rotheram-Fuller. It’s a practice that often stops around second grade—which is when kids with autism often stop improving—and it needs to be reinforced in older grades as well.

In the question-and-answer session, an audience member asked how parents seeking more support for their children should approach teachers who are already dealing with large class sizes and funding cuts.

Cawthorne said that if a parent isn’t getting satisfaction from talking with an individual teacher, he or she should approach the district special education director. Getting a group of parents together can also be helpful—and so can approaching a problem by asking how everyone can get together to solve it. “We are always looking to form partnerships with parents,” she said.

The post My Kid Has Autism. Now What? appeared first on Zócalo Public Square.

Thanks in part to the mommy lobby, the Utah State Legislature recently passed a bill to legalize the administration of Alepsia, a cannabis extract taken as oral droplets. Advocates celebrated earlier this week as Utah Governor Gary Herbert held a ceremonial public signing of the bill, ensuring the law will go into effect July 1. Alepsia contains ultra-low amounts (less than 0.3 percent) of tetrahydrocannabinol (THC), the psychoactive element in marijuana, but high amounts of cannabidiol (CBD), a chemical that has demonstrated potential for significant seizure control.

Amelia experienced her first seizure when she was only 4 months old. One day, as my mother was holding her, Amelia’s leg and arm on one side began jerking mildly. By age 1, she was experiencing hundreds of little seizures—myoclonic jerks lasting just a few seconds—each day. The seizures would cause her to fall on her bottom. Undeterred, she just got right back up, over and over again. We playfully started calling them her little booms. “Ah, boom”—there she goes again. I was 9 years old, and the only thing I could do for Amelia was construct a stuffed animal fort to cushion her falls. As we grew up, my younger brother and I became trained in caring for her more seriously, and our three youngest siblings pitched in where they could. Abby, the youngest, for instance, would sit next to Amelia and stroke her hair while she seized.

Amelia’s neurologist reassured us that kids often outgrow seizures, but it became clear early on that my sister was experiencing developmental delays. At age 2, Amelia had a full-body convulsion that lasted for 45 minutes. Realizing she wasn’t going to stop convulsing on her own, my parents rushed her to the hospital. A massive dose of Ativan stopped the seizure but sent her spiraling into respiratory arrest. With a respiratory therapist squeezing a bag, pumping oxygen into her lifeless lungs, my parents stood by, helpless. After 20 minutes, my terrified mother braved a question: “Do you ever get … tired?” He paused for a moment. “Yeah. Sometimes.” It was the wrong answer.

Treatments went nowhere. Amelia tried basically every FDA-approved anti-convulsive medication, and even surgery, with little success and often experienced major side effects. One drug did not let her sweat, causing her to overheat severely. Another triggered a life-threatening allergic reaction that required a 12-day hospital stay.

The only treatment that had any noticeable effect on her seizure control was a high-fat, high-protein regimen called the ketogenic diet. Amelia’s daily seizures fell from the hundreds to just a few dozen. But she stopped eating. After other medications failed, my parents eventually decided to give the diet another shot. Truth be told, I found this annoying. All the careful measuring and weighing that made the diet work sometimes made dinner late. Worse, to make Amelia feel like we were all in this together, my mom adapted her dishes for the whole family—which meant I had to eat quiche. Luckily for me (at least I selfishly thought back then), the diet did nothing for her seizures this time around, and I could go back to eating things like burgers and pizza.

Amelia’s seizures have evolved; she seldom convulses for more than a few minutes at a time now. But her developmental delays have become increasingly pronounced, and she has fleeting myoclonic jerks hundreds, even thousands of times a day. Soon those ubiquitous seizures garnered their own pet names: Little seizures became “blinkies,” and full-body ones were dubbed “big ones.” But what’s more difficult sometimes for my parents and me is her zombie-like post-convulsive state, in which, exhausted, she sleeps, drools, and then stares off into nothingness for an hour or two. In other words, she gets “zoney.” I once forgot the real names, telling a stranger that Amelia had “a bad spell in which she had several ‘big ones’ in a row and then was basically ‘zoney’ for two days.”

My parents have struggled mightily to fend off discouragement, mostly by engaging the enemy that is this disorder. My mother, who had planned on giving up her previous work to care for her young family, soon found herself mobilizing full-time on Amelia’s behalf. Exasperated by the lack of answers from doctors, she checked out every medical textbook on epilepsy in our local university library to become an expert on neurology. She diagnosed Amelia with Dravet syndrome three years before a real neurologist confirmed the diagnosis. My father supported her activism, using his vacation days to hold down the fort when she traveled to conferences a few times a year. After working with the Epilepsy Association of Utah for four years, my mom helped found a national nonprofit support group for other families like ours, Dravet.org.

But most of her time today, as it has been for the past 19 years, is spent taking care of Amelia’s needs—from administering rectal Valium (an emergency drug Amelia takes three times a day) and making sure she doesn’t fall too hard when she’s seizing (which has happened a number of times) to bathing and dressing her each day. Amelia will live under the care of parents or siblings for the rest of her life—we just have very little idea how long that might be. As the oldest sibling, I had to bring up the real possibility of eventually needing to care for Amelia before I could propose to my (now) wife.

It’s surreal how routine seizures have become for us after all these years. When Amelia has a convulsion in the tub now, instead of panicking, my mom just keeps bathing her. But if ubiquitous seizures have somewhat desensitized us, they have also opened our eyes to a different world. When a family from out of town with a child with disabilities sat in the pew behind us at church, the mother was touched when my brother and I actually talked to her son. My first job in college was working with adults with disabilities.

Occasionally Amelia has good days, too. She smiles and teases, and we catch fleeting glimpses of her radiant personality, of what might have been. She once appointed herself the language police of the household. “We don’t say ‘stupid’s or ‘shut up’s,” she would chastise her older brothers. She loves spinning, twirling, and being tossed upside down, so naturally, theme parks are her heaven. After so many seizure-related injuries, she rarely feels pain and has no fear. She thinks roller coasters are hysterical—and everyone loves sitting by her because she laughs the whole time.

Cannabis isn’t a substance my family—under just about any circumstances—would have an interest in legalizing, but what we call normal keeps changing. Alepsia has emerged as a source of legitimate hope for Amelia. Currently, 80 percent of children being treated with Alepsia in Colorado have experienced at least a 50 percent decline in seizures. Although still preliminary, those results vastly outstrip all the FDA-approved medications Amelia has tried. Other states are taking action, and that’s a good thing. While Alepsia won’t “save” Amelia, it might mean more days smiling and laughing, and fewer sitting on the couch drooling. And it might mean a new routine for my family—which would be more than enough, for us.

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