The Child Mind BlogBrainstorm
School Bus Strike Hits Our Most Vulnerable Children
Jan. 21, 2013 Beth Arky
As the New York City school bus strike enters Week 2, it's clear that the 54,000 special-needs children and their already overtaxed parents are bearing the brunt of the walkout. It's important to understand that for many of these families, the school bus is not just a ride to school. It's a crucial piece of a support system for kids who can't just jump on the subway—in fact, they may not be able to walk—and parents who can't hold down jobs unless their children are in reliable, competent, and caring hands.
It's not unusual that the only appropriate school for a child with complex developmental delays and resulting behavior problems might be an hour from home, so thousands of parents are missing work to endure long, arduous commutes, or keeping their kids home. But the personal cost doesn't end there. As Marie Myung-Ok Lee writes in a candid and thoughtful piece in The Nation ("A Good Matron Is Hard to Find"), children and parents alike are also missing the continuity and calm provided by experienced drivers and matrons now walking the picket line.
Lee, whose 13-year-old son, J, has serious medical challenges and developmental disabilities, including autism, has come to depend on J's excellent driver and matron: "Our son indeed relies on them to be consistent, calm, patient and firm."
And that's not easy. "On bad days, our son can bite, head-butt, scream or pinch—fairly typical behaviors for autism, but they can be shocking when one first encounters them," Lee writes. And because of J's gastrointestinal problems, he can have toileting issues. "It can be difficult not to take such assaults personally or want to retaliate," she notes, "which is why experience and maturity needs to be taken into account."
While experience doesn't guarantee expertise and sensitivity, Lee says it improves the odds; J's driver and matron each have worked with special-needs children for 18 years. Like many parents, Lee considers them valued players on J's team: "We all work together to keep our son calm, but when he's not, they know what do to. No amount of training and video-watching can prepare a driver for what it's actually like navigating New York City traffic with the bedlam of one (or more) children throwing a tantrum behind her." She also applauds her driver's "great communication skills with parents; she calls when she needs our input on our son's behaviors or medical issues. She and the matron make our son feel safe, which in turn helps us to feel safe."
As the city and the unions continue their stalemate and questions arise about the cost of bussing special-needs students, Lee brings it down to the most human level: It's the children, "who have little voice and are often ignored or scorned in society," who are losing the most. Those who continue to attend school may be missing hours because of long commutes, while parents who are keeping their children home worry that they may regress as they miss out on the routine, socialization and therapies school provides.
Lisa Quinones-Fontanez, another autism mom, explains in an open letter to Mayor Bloomberg and Local 1181 why 7-year-old Norrin, whose school is 22 miles from the family's Bronx apartment, spent the third day of the strike with her at her job as an administrative assistant, rather than at school. She writes that she has already used up two vacation days staying home with him, her husband, a court officer, can't take time off; and she needs the rest of her days for doctor's appointments and IEP meetings. She also needs to keep her job, and she's worried about that. "This is beyond a stressful situation," she writes. We hope both the union and the mayor understand that.View Comments | Add Comment
Mood Disorders and Violent Video Games
Jan. 17, 2013 Caroline Miller
If you want to read a provocative, insightful piece on violent video games, mental illness, and mass shootings, you'll find it on Kotaku, a gaming site that's part of Gawker Media. The headline tells the story and sets the tone: I'm Mentally Ill, I Love Violent Video Games, and They've Never Made Me Feel Like Killing Anyone.
The writer, Dennis Scimeca, is an articulate and startlingly frank gaming writer in his thirties who has bipolar disorder. And it's much more than a defense of the video games he has been a devotee of since childhood (though it is that). It's a close look at how games have interacted with his emotional life, both in the volatile years before he was diagnosed, in his 20s, and after.
Scimeca figures he suffered from bipolar disorder for more than a decade before he sought, and got, treatment, and he describes video games as one of the most important sources of pleasure and solace for a kid who was bullied and frustrated as a teenager. It's the skills challenge that made them satisfying, he says, noting that it's pretty hard for those of us who doesn't play to understand the appeal of what he calls first person shooters. "I was rubbish at playing sports as a kid, but I'm a pretty good FPS player and I feel a healthy sense of satisfaction when I beat a Halo 4 level at the Legendary (highest) difficulty level."
Of course he had revenge fantasies—everybody has revenge fantasies, he notes—but he says it wasn't just the fact that he didn't have semi-automatic weapons at his disposal that kept him from becoming Adam Lanza.
Even if I had been able to get my hands on guns in high school I doubt I'd have used them. I had a family who loved me, and friends who listened to my suicidal rants and slides into depression. These people comforted me.
Scimeca makes it very clear that it isn't just medication that helped him get control of his illness, but also his family and friends. And he's also clear that the real problem wasn't anger but emotional pain so extreme that he didn't want to "move or talk or even breathe." Without that support system and attention to his pain, and with access to guns, he imagines that the outcome could have been very different.
What might have made me a school shooter in some other reality would have been whether I was lonely, or whether anyone was paying any attention to the fact that I was in constant pain, or whether I could have easily laid my hands on a lot of guns, and I'm very glad that in my case none of those things were true.
In another post last fall Scimeca writes about why it's important to be open about psychiatric problems, and how long it's taken him to be able to be public about his own diagnosis. We appreciate his candor about living with a disorder that is so easliy and frighteningly misunderstood.View Comments | Add Comment
Aaron Swartz Suicide: Genius and Depression
Jan. 14, 2013 Caroline Miller
The death of Aaron Swartz, the 26-year-old programming prodigy and digital rights activist who committed suicide Friday, was stunning and upsetting. Swartz, who helped invent RSS as a 14-year-old and contributed to the creation of Reddit, was a passionate believer in the principle of open information. He was being prosecuted for allegedly downloading millions of academic papers collected by JSTOR, which sells digital access to scholarly journals, from the MIT archive. Swartz was said to be very upset about the charges, which carried a sentence of up to 35 years in jail and $1 million in fines. He was also said to be struggling with depression.
Mashable outlines the controversy over the criminal charges against Swartz, which his family calls “intimidation and prosecutorial overreach,” and some of the tributes offered by tech leaders, including this description of Swartz from a Harvard academic and activist: "A kid genius. A soul, a conscience, the source of a question I have asked myself a million times: What would Aaron think?"
What cuts even closer to the quick is the blog Swartz himself wrote in 2007 to describe his experience with the illness and depression that plagued him. I hope you’ll read it.
Swartz begins by apologizing for not keeping up with his blog, and admits that he’s been ill with several things, including stomach pain and migraine.
I have a lot of illnesses. I don’t talk about it much, for a variety of reasons. I feel ashamed to have an illness. (It sounds absurd, but there still is an enormous stigma around being sick.) I don’t want to use being ill as an excuse. (Although I sometimes wonder how much more productive I’d be if I wasn’t so sick.)
And he writes with painful eloquence about being depressed, about the pervasive sadness and the frustration of being unable to feel the joy everyone else seems to feel.
At best, you tell yourself that your thinking is irrational, that it is simply a mood disorder, that you should get on with your life. But sometimes that is worse. You feel as if streaks of pain are running through your head, you thrash your body, you search for some escape but find none. And this is one of the more moderate forms.
There’s more. But he comes back, in the end, to stigma, citing an economist who notes that depression, which affects 1 in 6 people, is the greatest impediment to happiness today:
Sadly, depression (like other mental illnesses, especially addiction) is not seen as “real” enough to deserve the investment and awareness of conditions like breast cancer (1 in 8) or AIDS (1 in 150). And there is, of course, the shame.
Swartz’s suicide is another reminder that genius is often no match for depression, and that the shame that inhibits both treatment and research can rob us all of great potential.View Comments | Add Comment
CMI Proudly Joins Vice-President in Addressing Gun Violence
Jan. 11, 2013 Harry Kimball
This week, Child Mind Institute president Dr. Harold Koplewicz was in Washington, DC, as a part of what he called an "amazing group" of mental health professionals presenting to the Vice President's Commission on Gun Violence. The wide-ranging scope of Vice-President Biden's inquiry into this problem, from public education to increased access to mental health care, fits very well with the Child Mind Institute's mission, and we are thrilled that he and the President have taken leadership in this critical area. We're also proud to be able to work with so many other committed organizations and applaud the efforts of everyone involved.
Only time will tell, but out of the unspeakable tragedy in Newtown, Connecticut, we are seeing some growing glimmers of hope and a sense of momentum that might just make this a better world for our childeren and children everywhere. You can read more about the Washington, DC meeting here.View Comments | Add Comment
Finding a Better Way to Prevent Teen Suicide
Jan. 10, 2013 Harry Kimball
A new study out of Harvard on teen suicide makes a sobering observation: 55% of people 13 to 18 who plan or attempt suicide have had some contact with the mental health care system. Which means it's not just kids who are not getting attention who are suicidal. It's easy to draw a disturbing conclusion—that there is nothing we can do for some of these kids.
But Dr. David Brent from the University of Pittsburgh sees it differently. "One of the take-aways here is that treatment for depression may be necessary but not sufficient to prevent kids from attempting suicide," he tells the New York Times. In other words, what the study really tells us is that we need to look for better ways to help adolescents in distress and leverage the tools we already have by taking a holistic approach.
We do have good treatments for the depression that can lead to suicidal behavior—but we are not always successful at delivering them, particularly to adolescents. At the Child Mind Institute we often get questions from parents frustrated by children who refuse or neglect treatment for a variety of psychiatric disorders, including depression. Antidepressant medication alone isn't always enough; studies show that the best treatment is a combination of antidepressant medication and behavioral therapy that can be very important in helping kids recognize and redirect their very negative thoughts and feelings.
The study also highlights a very important point: that kids most at risk for suicide are those who are not only depressed but impulsive, so depression combined with ADHD or substance abuse or explosive behavior is a potentially more toxic situation.
But it's also the case that adolescents, even as they are more emotionally labile than any other period of development, are in the process of separating from parents, which can make them disturbingly elusive.
The Times speaks to a mother who lost her daughter to suicide, who was being treated for depression. "I think there might have been some carelessness in the way the treatment was done, Margaret McConnell says. "And I was trusting a 17-year-old to manage her own medication. We found out after we lost her that she wasn't taking it regularly."
Knowing what's really going on with a teenager who's seeking independence can be one of the most difficult challenges of parenting. The Times story ends on that note : "Ms. McConnell said that her daughter's depression had seemed mild and that there was no warning that she would take her life.View Comments | Add Comment
Fearless Friends and Canine Companions
Jan. 4, 2013 Harry Kimball
We like to think that there is always a little bit of magic going on at the Child Mind Institute, but today was something else. It was the last day of our Fearless Friends program for kids with obsessive-compulsive disorder and specific phobias, and Dr. Jerry Bubrick, who runs it, had told me that a therapy dog would be in the office. At about 11 am I got an email from his iPhone. "Come now to Jenna's desk!!!"
There I met Jezebel, or Jezzie, who was calmly passing the time with two Fearless Friends, a boy and a girl, and eating cucumber slices for some reason. In the course of just a few minutes the girl, who was quite afraid of dogs, pet Jezzie "on her back and on all four legs," as she put it. I think she got the nose, because she said it was "really wet." Oh, and the real prize: "I found her tickle spot."
Throughout all of this Jerry and his colleagues Dr. Jamie Howard and Dr. Rachel Busman gently guided the interaction, which of course was a clever and delightful bit of exposure therapy. But it was the little boy who truly grabbed my attention. (Jamie told me later that his issue with the texture of cucumbers explained that odd detail.) At one point when the young lady was petting Jezzie, he asked, "Did you let her lick you yet?" No was the answer. "I wonder when you will," he said.
In case the point is lost, these children were in the care of smart, caring adults, but they had also been taught to support each other. And that says a lot about programs like Fearless Friends and Brave Buddies in particular, and about the Child Mind Institute as a whole. I won't even mention the other therapy dog, Safronelle, that mysteriously appeared, or the visitor who said the atmosphere today was like Google headquarters. I'll close with what the boy whispered to the girl as I walked away; Jamie told me later. "If she sticks her tongue out, she's just yawning," he soothed her. "Don't worry."View Comments | Add Comment
The Wrong Response to the Newtown Shootings
Jan. 4, 2013 Caroline Miller
The last couple of weeks have been especially painful for people with autism and the people who love them. We've heard from a number of parents that their kids with autism have been the targets of hostility—in person and online—ever since speculation that Adam Lanza had autism hit the media.
Joslyn Grey writes on Babble about some of the more hateful initiatives out there to link autism to the shooting. Notes Grey, who has two kids with Asperger's, "The worst thing my kids are going to do to you, on the other hand, is entangle you in a detailed discussion of the similarities between Lord Vader and Lord Voldemort."
There's a kind of awful confusion at the heart of this anti-autism campaign: that the kind of cold-blooded resolve of a young man who kills children and their teachers is connected to the lack of affect many people with autism display. People with autism may have difficulty reading social cues from other people, and responding accordingly, but that doesn't mean they lack empathy. And the kind of explosiveness kids with autism may display when they are frustrated or overwhelmed has nothing in common with premeditated murder. It is, in fact, most often directed at themselves.
What is true is that mental illness, especially when it's untreated or misunderstood, can result in isolation, frustration, misery and psychosis, and the way to prevent that is to make it possible for people to be more open about needing and seeking treatment.
The worst possible outcome of this tragedy would be making parents feel less free to discuss the worries they have about a child for fear that the child will be branded a potential Adam Lanza.
Let the final word go to the many, many autism parents sharing sweet photos of their kids on Autism Shines, to help dispel the misunderstanding that autism explains this killer's behavior. These kids don't deserve it.View Comments | Add Comment
Lady Gaga Now Providing Free Therapy to Fans
Dec. 31, 2012 Rachel Ehmke
Lady Gaga keeps surprising us by finding new ways to reach out to kids who are struggling. She's has become a kind of pop spokesperson for the importance of discussing—and treating—mental health issues. Now the singer has announced a new plan to provide free counseling before concerts on her current tour. The counseling will take place on the tour's Born Brave Bus and will be part of a tailgating experience that includes food, games, and DJs.
Okay, mental health care in such a festive atmosphere seems a little incongruous, but Gaga specializes in defying expectations. On her Twitter account she explained, "I feel like most kids don't look for help because they feel embarrassed so mom + I wanted to break the stigmas around 'help' and make it fun." She also wrote, "BornBrave Bus is a place where mental health + depression are taken seriously w/ no judgment, FREE real help available to all."
No way to know whether kids will take her up on her offer, but Gaga (who is only facilitating the sessions) says fans can expect "professional private or group chats about mental health, depression, bullying, school & friends."
Given how intimidating it can be to admit you need help for mental health issues, and how often stigma prevents or delays people from seeking treatment, we can't help but applaud. By extending her heartfelt support and resources to fans Lady Gaga is trying to make that first step easier. Sometimes just saying how you feel out loud can be an important beginning.View Comments | Add Comment
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