The Child Mind BlogBrainstorm
Notes on Newtown and 'Adam Lanza's Mother'
Dec. 17, 2012 Harold S. Koplewicz, MD
Liza Long has written a piece called "I Am Adam Lanza's Mother" that has gone viral on the Web. Her son has threatened to take her life and to take his own, and has been arrested and hospitalized numerous times. "We still don't know what's wrong with Michael," she writes. "Autism spectrum, ADHD, Oppositional Defiant or Intermittent Explosive Disorder have all been tossed around at various meetings."
What she does know is that she is afraid in the wake of the Newtown shootings.
I am sharing this story because I am Adam Lanza's mother. I am Dylan Klebold's and Eric Harris's mother. I am James Holmes's mother. I am Jared Loughner's mother. I am Seung-Hui Cho's mother. And these boys—and their mothers—need help. In the wake of another horrific national tragedy, it's easy to talk about guns. But it's time to talk about mental illness.
Unfortunately, Liza's story is not unusual. Some 15 million young people in the U.S. have a psychiatric disorder—and less than half will get any attention. There are three main reasons this public health problem exists: shame and stigma keep families from seeking help early on; institutional barriers limit access to mental health care; and there is not enough research focused on developing innovative, evidence-based treatments.
Liza is involved in the mental health care system, but we know that most parents do not seek help as soon as symptoms appear. Stigma and shame keep families from acting even when their child may be exhibiting alarming behaviors. On average it takes two years before a parent will seek professional help for a child with psychiatric symptoms. If they do get help, they still may not have the full support of their community due to persistent misconceptions about mental illness.
We often place the blame on parents, teachers, the media, or the children themselves. We speculate freely about things like diet or immunizations being contributing factors. But the bottom line is this: we simply don't treat disorders that occur from the neck up with the same respect, compassion and scientific rigor as disorders that occur in any other part of the body. And we won't be able to change that until we are able to de-stigmatize psychiatric and learning disorders.
Difficulty getting access to care is another big reason why psychiatric disorders in children and teens often go untreated. Health insurance typically does not cover outpatient psychiatric services, and even when there is coverage, insurance may only pay a fraction of the cost of the services. Access to care is also a problem. There are just 7500 practicing child and adolescent psychiatrists in the whole US—far fewer than are needed. Those who do practice are often forced because of managed care to limit patients to cursory 15-minute medication management visits, ignoring the more time-consuming behavioral treatments and psychosocial interventions that could be highly effective.
Then there is the lack of innovative treatments. Progress is basically at a standstill on the medication side; we haven't seen a truly new, original drug for childhood psychiatric disorders since Prozac was released in the 1980s. But we also haven't seen innovation in the way that treatment is delivered.
The standard of care is still the once-a-week outpatient appointment. While that's convenient for the treating physician, it just doesn't address the kind of problems that Liza's son is experiencing. A more flexible, multidisciplinary approach—and one that includes parents—is needed. New and effective psychosocial interventions do exist, but there are too few trained professionals with the skills to provide them.
While mass shootings are rare, the pain of untreated psychiatric disorders is common and the social cost quite steep. These children are more likely to have academic failure, school dropout, use illicit drugs, be a bully and be bullied, and have interactions with the legal system than typical kids.
We are scared of illness we don't understand. 50 years ago we were afraid of cancer. 25 years ago it was AIDS. Now it's time to understand mental illness for what it is: disease of the brain. We need to spread the word. We need to start training more professionals on evidenced based psychosocial interventions and treatments, and teach pediatricians, school personnel, and parents about the warning signs and symptoms of psychiatric illness so they feel comfortable getting kids help. And we need more investment in research science so we're able to identify biological markers of risk, improve diagnosis, and test whether treatments are effective by tracking real changes in the brain.
Yes, these solutions aren't easy and they are expensive. But talking about children's mental health is doable, developing new treatments is essential, and research science is critical if we want our children to have healthy, enjoyable, and productive lives. And if we want to give Liza Long and her family the answers they need.View Comments | Add Comment
Mass Shooting at Connecticut School
Dec. 14, 2012 Harry Kimball
We have nowhere near all the facts, but it is obvious that a terrible tragedy is unfolding in Newtown, CT, where a gunman opened fire in an elementary school this morning. Reports suggest that dozens of people are dead, many of them children. This act is incomprehensible, and our hearts go out to the entire community.
It is important that children everywhere, and particularly those close to this traumatic event, have the support of their parents and the community in understanding and adapting to facts we hope no child has to face. We have assembled some advice from experts here explaining the signs of trauma in children and giving advice to parents and teachers who are helping children cope.
Our thoughts are with the people of Newtown, and we hope a tragedy like this never happens again.View Comments | Add Comment
'Getting Better Is Not a Solo Thing'
Dec. 13, 2012 Caroline Miller
A wonderful 13-year-old named Franny kicked off the Child Mind Institute's third annual Child Advocacy Award Dinner last night, telling a hushed crowd of 900 guests about the anxiety that had, a year earlier, effectively shut down her life. She wasn't going to school. She could barely leave her apartment.
Terror is the best word I could find to describe my feelings most of the time—sometimes terror so powerful you feel like your heart is just dropping out of your body. And I was scared of what was in my own head—thoughts I knew weren't normal, thoughts of harming myself or ending my life.
Franny talked about finding help at the Child Mind Institute, starting the eighth grade at a new school and restarting her life. It was lovely to see her dazzling smile. And to hear her message to other kids:
If there's one thing I want to say to someone who is feeling as bad as I was feeling a year ago, it's this: You can be helped. It's so possible. You're not not not not alone. Getting better is not a solo thing.
For me Franny's words—"Getting better is not a solo thing"—expressed the theme of the evening, which focused on the Child Mind Institute's work not only helping children who are struggling now, but helping children in the future by pushing a transformative new paradigm for research into brain development. To do this work it takes not only brilliant clinicians, but researchers of many disciplines—neurobiologists and computer scientists and engineers, for starters—and supporters willing to invest generously in the work that has the most promise for improving diagnosis and treatment. Our Child Advocacy Award winner, Michael Fascitelli, sounded that theme in accepting the award last night.
There's nothing more important than our kids. We all have many great causes that we support, but this one has the most direct impact on the future.
And Dr. Nora Volkow, the director of the National Institute on Drug Abuse whose pioneering work showed that drug addiction is a disease of the brain, got to the core of the Child Mind Institute's mission as she accepted the 2013 Distinguished Scientist Award:
Thirty years ago, when I was a young psychiatrist seeing adult patients, we realized that these disorders first manifested in childhood and adolescence; now we have the tools for early intervention that can change the course of a life for the better, and that is what is happening here.
If you want to get a better sense of how the science we're supporting can help change the lives of children—and see and hear a little bit from Franny—check out this video, which was shown last night. The evening was festive as well as fruitful, as Dr. Harold Koplewicz put it this morning, we have 6.4 million reasons to thank everyone who came and contributed and helped make the event a success.
View photos from the event:View Comments | Add Comment
Sarah Ferguson on Girls and Self-Esteem
Dec. 3, 2012 Caroline Miller
Sarah Ferguson, Duchess of York, stopped by the Child Mind Institute this morning to learn a little more about what we do and talk a bit about an issue of special concern to her—helping girls develop healthy self-esteem.
Sarah is appealingly frank and she talks rather disarmingly about her own struggles with self-esteem, especially when she was a young princess being ridiculed by the British tabloids as "fat, frumpy Fergie" and "The Duchess of Pork." "I lost all my self-esteem, I lost any confidence I had, I lost myself, completely," she said, "and I don't want any girl to have to go through that. So I focus a lot of my attention on building self-esteem at a very young age."
She empathizes with young girls who compare themselves to "stick-thin" models and feel inadequate. "I had that with Diana, who was stick-thin, and I was always the one running behind with the rather large backside," she said.
She talks about the importance of parents listening to children and taking their fears and frustrations seriously, and letting them know that you love them "completely as they are."
She also talked at some length about discovering that her daughter, Princess Beatrice, is dyslexic. Beatrice was 7 years old when she seemed to lose her joy, feel ostracized at school, become introverted. Sarah thought at first that her daughter might have been targeted by bullies because she was a princess, but a very good teacher, she said, explained that Beatrice was struggling with reading and not being able to keep up with the other children. With special help in school, Sarah said, Beatrice did well and has recently finished college.
Sarah supports many different efforts to help children and has published quite a few children's books, including her latest, Ballerina Rosie, about a little girl whose red curls are always "squeaking out of her bun" and whose tutu is usually askew, who thinks all the girls in her ballet class are perfect except her. Suffice it to say that a shot of confidence comes her way, compliments of the Duchess.View Comments | Add Comment
'Far From the Tree': Parenting Children Who Are Different
Nov. 30, 2012 Caroline Miller
Andrew Solomon's new book, Far From the Tree, about parents of children who are dramatically different from them—or, perhaps more to the point, different from what the average parent hopes for or expects in children—is being reviewed, annotated, discussed and dissected all over. Book reviewers have applauded it for offering a candid and often surprising look at parents' struggles to accept and passion to protect children with "differences" ranging from autism to Down syndrome to dwarfism; kids who are gay or deaf or prodigies or killers.
The aggregation of these various (and arguably radically different) challenges to parenting is provocative, and critics have found it very affecting. Dwight Garner, the often-acerbic New York Times book critic, calls it "knotty, gargantuan and lion-hearted."
But to me, what's especially interesting are responses and recollections from parents for whom the emotional landscape Solomon is exploring is intimately, sometimes painfully, familiar.
Slate offers an intense essay by Cristina Nehring, a writer and single mother of a girl with Down syndrome who seconds some of Solomon's conclusions: "Hard love is in no way inferior to easy love," she cites, and "Diversity is what unites us all." But she takes issue with others, including the idea that the prospect of a limited future leads to "chronic sadness" in parents of children with Down syndrome. "I find it leads to "chronic carpe diem"—a chronic desire to seize the day and wring the best possible from every moment—and from myself."
It bothers Nehring that Solomon echoes the notion that while autism is mysterious, Down syndrome is not. "Autists are prodigies, introverts, misunderstood; people with Down syndrome are just dumb and dull," she writes. "And yet, Eurydice has always been mysterious to me." And she adds about her daughter, "The joy Eurydice takes in each detail of life is the most infectious quality I've ever known."
In a sometimes painfully honest piece in the National Journal, Ron Fournier, a veteran Associated Press reporter, offers a very different take on his relationship with his autistic son Tyler. Fournier's journey starts with his frustration and disappointment that Tyler is terrible at sports—which had been his only real model for father-son bonding—and his admission that he was upset at Tyler's typically Asperger's behaviors. "I was not just embarrassed about Tyler's manners; I was embarrassed about being embarrassed." He was also upset when the psychologist who diagnosed Tyler at 12 said that he was also depressed. He was sad and socially isolated, and "mortified about his failure to live up to my expectations," Fournier writes guiltily. What's sweet and funny about this piece is the role that two presidents—George W. Bush and Bill Clinton—play in teaching this former White House reporter how to be a better father to a son who has fallen, or maybe just landed, "far from the tree."View Comments | Add Comment
Sandy Isn't Over: View From the Rockaways
Nov. 12, 2012 Harry Kimball
Yesterday I stood on Beach 95th Street in the Rockaways amid drifts of sand, piles of sodden insulation and sheetrock, and discarded furniture. The apartment behind me smelled of developing mold—I knew because I had been inside tearing down walls in the hope to save the building from being totally contaminated.
Across the street, people from all over the region had come to offer food and supplies, and cars and buses filled the parking lot that until recently had served the beach, now in ruins. Hundreds of people in shirts advertising their membership in church groups and relief organizations went from home to home, offering help. On Saturday, when I asked a guy I was working with where he lived, I expected the answer to be Brooklyn, say, or Queens. "Virginia," he replied.
If you are in the Rockaways, or on Staten Island, or in hard hit parts of New Jersey or Long Island, you can see that Hurricane Sandy isn't over though the winds have passed. These neighborhoods are not yet in recovery. Ripping down walls to arrest the spread mold even as heat and hot water and electricity are absent and the temperatures drop is not recovery—it is a desperate measure.
Through all of this, parents are trying to protect their children and keep life from becoming totally alien. (This jibes with our own Dr. Jamie Howard's advice for parents following a traumatic event, which you can watch here.) Kids on the Rockaways are going to school—maybe not the shuttered buildings out there, but keeping routine nonetheless. I saw young people pitching in to dig out cars and houses from sand drifts, giving purpose to a time that could easily inspire doubt and dismay. Even as I saw adults understandably at their wits' ends, I saw kids who demonstrated just how resilient kids can be, particularly when their families and their community are standing strong behind them.
The homeowner others and I were helping yesterday had a three-week-old daughter, and he was determined not to have anything in their home that could harm her. Her name: Sandy. I'm sure she'll be a force of nature.View Comments | Add Comment
When Mom and Dad Disagree on the Diagnosis, or the Treatment
Nov. 12, 2012 Caroline Miller
Bronwen Hruska hits a nerve with a piece in Psychology Today on how difficult it can be for parents to agree about whether a child needs psychiatric help, especially medication. "As soon as you have two parents making a decision as emotionally charged as medicating a child, you're bound to have disagreements," she writes. "It appears that, in many cases, these disagreements are straining marriages to the breaking point."
Hruska has written about her own experience of being pressured by her son's teachers to have him evaluated for ADHD and start taking Ritalin, largely because the school felt that he wasn't performing up to his potential—in the third grade.
In response to that piece, she heard from dozens of parents, many of whom talked about the strife the issue was causing in their marriages.
"When couples fight," she writes, "it seems to almost always be the men who are against medication. Not that there aren't many women who wrote to me expressing a deep discomfort and refusal to medicate, but in icy spousal standoffs, the roles were pretty clear."
She's talking specifically about ADHD, but I would add that we see the same pattern in parents with children all over the diagnostic map: mothers seem more inclined to see a problem, a need for a diagnosis, a need for intervention—whether it's medication or something else. That could have to do with temperamental differences between men and women, which Hruska explores, or with the fact that mothers often spend more time with the child, hence might be more tuned in to cognitive and emotional differences, and experience more frustration with a child's behavior.
This certainly deserves more attention. But the most disturbing point she makes, to my thinking, is that when parents are polarized, neither is able to acknowledge that some of the opposing parent's perceptions are valid. "In my own case," she writes, "I was scared of voicing my many doubts about medication, for fear it would weaken my 'position.' "
When an oppositional situation makes it impossible for both parents to respond in a nuanced way, the child is the loser.View Comments | Add Comment
Sandy and Election Day: If You Can, Vote
Nov. 5, 2012 Harry Kimball
Here in New York City, one of our most beloved annual traditions, the New York City Marathon, was cancelled because of the ongoing deprivation and devastation caused by Superstorm Sandy. When the storm first struck, the mayor and the marathon's organizers vowed that the 5-borough race would go on planned, as a sign of resilience. But their initial optimism was outstripped by the reality, emotional as well as physical, that too many people in the area are still suffering, without power, heat, and in many cases, homes.
Today we are on the eve of another civic tradition, but it's one we cannot cancel because it is the very basis of our civil society: Election Day.
In our area there are many for whom voting will be an arduous if not impossible task. If you're holed up in a cold apartment on Staten Island, it will be tempting not to make the effort, especially if your usual polling place is waterlogged and dark. If you're a Long Island family that lost your home, expending precious gas to get to the polls might not seem a high priority.
As always, our kids are here to provide inspiration. A colleague who lives in hard-hit coastal New Jersey told me that yesterday she stood in a long line of people waiting to pick up absentee ballots, since it's doubtful that they'll be able to vote at their usual polling place tomorrow. After a long wait, when it didn't appear that much progress was being made, she decided to give up and come back later. A group of children playing nearby, while their parents stood in line, were incredulous. "You didn't vote!" they said. "Why are you leaving?"
There has been a lot of speculation as to how Sandy and the storm's aftermath will tilt the polls, but that is not my concern here. I simply want to remind people of what we so often talk about in regard to kids who struggle—that courage is doing what is difficult for you but easy for others. Please, vote if you can. If you are outside of the Mid-Atlantic and Northeast or unaffected by the storm, vote because you can.View Comments | Add Comment
Hurricane Sandy: A Lesson in Community
Oct. 29, 2012 Harry Kimball
In the shadow of the extraordinary storm barreling towards the Northeast, New Yorkers have been treated to a distillation of Big Apple behaviors, both stereotypical and oft-overlooked. Yesterday, for instance, I stood in a line outside a Trader Joe's, alongside people young and old waiting to stock up on lentils and tuna fish. A woman walked by and wondered what the line was for. I told her, somewhat sheepishly, and her response was classic. "You guys are crazy! You could go to any other store!"
But amid all the rampant consumerism—to truly capitalize on the storm, stores have signs announcing that all emergency supply sales are final—and judgmental comments, there is a fellow-feeling in the air that is always here, though it can go unnoticed. I thought it was nicely described by Governor Mario Cuomo in his press conference this morning. "It never ceases to amaze me how New Yorkers are able to rise to the occasion," he said. "We are known for our courage and our toughness, but we also have a sense of community that is really inspirational. And it seems in our darkest hours that New Yorkers shine the brightest."
Though I don't think Hurricane Sandy represents our darkest hour, the sky is darkening as I write this, and I do see my fellow New Yorkers helping each other out on the streets. And I am sure that our neighbors all across the region, particularly in New Jersey, are doing the same. It's nice to recognize our capability to look out for each other, but I wish for two things. One: that this capability not only be noticed and commented on when we are faced with adversity. And two: that it not only emerge when the challenge to our collective wellbeing is so clear.
In short, we face little hurricanes everyday, and we look out for each other. We need to celebrate that, too—and do better. "New Yorkers will always make the best of it." a California friend said to me today. Let's prove her right.View Comments | Add Comment
Steven Spielberg Talks Bullying and Dyslexia
Oct. 23, 2012 Rachel Ehmke
The director Steven Spielberg has recently opened up about his childhood struggles with dyslexia and bullying.
On 60 Minutes Sunday night Spielberg describes being a "nerd" and an "outsider" growing up, "like the kid that played the clarinet in the band and orchestra, which I did." Spielberg wasn't good at school or at sports, and he was an awkward kid, making him an easy target for bullying. He says he was also bullied for being in the only Jewish family in a very non-Jewish neighborhood. (In the interview his mom reminisces about the evening he snuck out to smear peanut butter on the windows of his tormentors.)
In another interview Spielberg revealed that he was diagnosed with dyslexia five years ago, which he described as "the last puzzle piece to a great mystery that I've kept to myself." The diagnosis helped explain why he struggled so much in school despite his other obvious talents. Spielberg began making movies as a boy scout at the age of 12 and dropped out of college when he was offered an internship at Universal Studios. "Movies made me feel inside my own skillset, " he told Quinn Bradlee during his interview on Friends of Quinn, a website for young adults with learning differences. Through the years he's discovered how to work with his dyslexia, too. He tells Bradlee:
I'm in a business right now where reading is very important. It's of critical importance to me that I read books and scripts. And I've been able to overcompensate, and I've basically—never feeling ashamed of myself—will take 2 hours and 45 minutes to 3 hours to read 120 pages. It takes me about two hours and 45 minutes to read what most people can read in about an hour and 10 minutes. I just know that I'm still slow at reading but I've learned to adjust.View Comments | Add Comment