The Child Mind BlogBrainstorm
One Mother's Christmas Wish
Dec. 16, 2014 Caroline Miller
Liza Long, the wonderfully empathetic and courageous woman who two years ago wrote "I Am Adam Lanza's Mother," has written a kind of Christmas letter on her blog that I found quite moving. The good news is that her family, shattered by her son's emotional problems, is now back together, after treatment that has ended his violent outbursts. Last weekend she took her daughter to see her first Nutcracker—a favorite holiday treat for so many mothers and daughters.
At the same time, Long notes that the effective help her family got and the hope with which they approach the future are things so many other families lack. And she cites at least 15 men and women with documented mental illness who were killed by on-duty police officers in 2014. Long sees being open about the "often overwhelming challenges of mental illness" as a critical first step in getting more families access to care. "Without treatment," she writes, "two years after Newtown, for too many families, Christmas is a time of sorrow and loss and grief."View Comments | Add Comment
Two Years After Newtown
Dec. 12, 2014 Caroline Miller
Sunday is the second anniversary of the shootings that claimed the lives of 20 children and six educators at Sandy Hook Elementary School. One of the groups formed in the aftermath of that tragedy, Sandy Hook Promise, has released a powerful video that tells the story of three families who lost children to gun violence. One thing the three stories have in common is missed opportunities.
One is the story of a 16-year-old boy killed by a friend fooling around with his father's shotgun, which had been left in an unlocked closet. The victim's best friend said of the evening that ended in his death: "There were so many red flags that night and we just ignored them. We were kids that thought this would never happen to us."
The second story was about a depressed teenager who killed herself with a gun she took from the trunk of her policeman father's car. While she deflected concern from her family, she posted extensive notes on social media platforms about her suicidal feelings. They're painful to see, including a tweet: "It's like God is torturing me keeping me here."
The third story is that of a 7-year-old boy killed at Sandy Hook. His father, thinking of the shooter, talks of the tragic combination of isolation and access to guns. But he also says, "This doesn't happen overnight or in a week. There had to be multiple markers, multiple opportunities to intervene" that might have prevented the tragedy.
Here's the note he closes on, and a message we endorse: "I think our responsibility as parents transcends our own children; we also need to look out for our neighbors and their children." He notes that sometimes an outsider "will notice and bring light to something almost too close for a family to see."View Comments | Add Comment
Hollywood Speaks Up for Children's Mental Health
Dec. 8, 2014 Harry Kimball
On Thursday and Sunday, PBS stations in the New York City metropolitan area will air a Metrofocus episode including clips from our 2014 Speak Up for Kids event A Leading Role: How TV and Film Can Change Kids' Lives. You can check out the PBS presentation at these times and locations:
Thurs. 12/11 @ 7 p.m. on WLIW21 http://www.wliw.org/
Thurs. 12/11 @ 10:30 p.m. on NJTV http://www.njtvonline.org/
Sun. 12/14 @ 7 p.m. on THIRTEEN http://www.thirteen.org/
We wrote this blog about the original event:
Last May in Los Angeles as part of Speak Up for Kids, producer Brian Grazer convened a panel of Hollywood leaders to discuss the depiction of mental illness in the media, and it highlighted the fascinating union of lived experience and pure entertainment that our best storytellers bring to the screen. In addition to Mr. Grazer, the panelists were director David O. Russell, TV showrunner Jason Katims, and Netflix chief content officer Ted Sarandos.
As moderator Willow Bay pointed out, contrary to her journalistic training to be "very careful about my gender biases," these men are "fathers using their voice." The fact that dads are speaking up to "advocate on behalf of children and families struggling with these issues, to give a voice, a face, to give a story to the challenges of mental health," she continued, "is very well worth noting."
And the whole conversation is well worth watching, which I encourage you to do so here. But if there is one takeaway for me, it's a combination of Russell's response to an audience member's question and something Sarandos said earlier in the event. The question: will it take "more sharing of stories" to address the stigma of mental illness? Mind you, Katims and Grazer have sons with Asperger's syndrome, and Russell's son has bipolar disorder. Yes, they agreed, visibility will reduce the shame. But Russell hit home just how damaging that shame is: it interferes with people being "responsible for themselves and their own behavior."
He related this to the main character in his film Silver Linings Playbook. "Because of the stigma he didn't want to take his medication. And that's a big struggle for a lot of people." Russell's son also has behavioral plans to manage his symptoms. "Real simple—that's the driving manual for my son's life, his future. And when he masters that, he can go, just like someone who takes insulin everyday."
But how do we get to the widespread understanding that can normalize chronic mental illness to the extent that symptoms and treatments alike are acceptable—so that they can be owned and managed without shame by our sons and daughters? Unsurprisingly, the panel put faith in the screen. Sarandos put it in particularly honest terms.
"When I was a kid, we learned almost everything in high school," he said. "Now, kids learn almost everything on television." That's not a bad thing for Sarandos, who has high school kids of his own. "When I was in high school, the kids with disabilities were corralled off somewhere else, we never saw them, they had a different lunch hour. We'd pass them like this," he said, miming a quick glimpse in the hallway, "who was that?" I remember the same thing when I was in elementary school. "There was no opportunity to get to know them, their stories, their lives."
So Sarandos is happy that media is opening its eyes to the marginalized and stigmatized—because the younger generation is watching. And why wouldn't they be? "Parenthood is a great show," he concluded. "Silver Linings Playbook, you can't even talk about it without laughing."View Comments | Add Comment
De Blasio: $130 Million for Mentally Ill in Justice System
Dec. 2, 2014 Caroline Miller
One of the things Hillary Clinton talked about in accepting the Child Mind Institute's Child Advocacy Award last week was the need for more and better community care for people with mental illness. Without that, she said, "jails and prisons have, in many ways, become our primary mental health providers."
We certainly agree, which is why we were glad to read today about New York City Mayor Bill de Blasio's initiative to improve mental health services for people in the justice system. Some 40 percent of inmates in the city's jails, the New York Times reports, have a mental illness. De Blasio pledged to spend $130 million over four years on both pretrial diversion programs—to get people who have committed minor offenses into treatment instead of jail—and services for inmates who are being discharged from jail. Both are desperately needed.
Since stories are so much more persuasive than numbers, the Times piece cited a homeless 56-year-old veteran with schizophrenia and a substance abuse problem who died earlier this year in custody. He had been arrested for sleeping in a stairwell. Instead of getting help, he was sent to Rikers.View Comments | Add Comment
An Iraq Veteran on Telling Stories and Processing Feelings
Dec. 2, 2014 Jessica Kashiwabara
Debut author and Iraq veteran Phil Klay has won the National Book Award in Fiction for his short story collection Redeployment. In his acceptance speech he expressed how writing helped him to process and communicate his experiences: "I can't think of a more important conversation to be having. War is too strange to be processed alone."
Klay served 13 months in the Anbar province in Iraq from 2007-2008 as a public affairs officer for the Marines. In a video discussing his book, the 31-year-old author speaks about his need to tell these stories: "Before I served, my notions of war were incredibly shallow, and I didn't actually come back much wiser. But I had all these unquiet memories that demanded attention."
He continues: "This book is a result of four years of me trying to engage with these wars, and what they've meant for the people involved. It's my attempt to be as honest as possible. And crucially for me, it's my attempt to take those unquiet memories and experiences and communicate them."
In a New York Times op-ed entitled "After War, a Failure of the Imagination" published earlier this year, Klay wrote about the disconnect between civilians and veterans. He challenged civilians to connect and listen to the stories of veterans, and for veterans to share them. "Believing war is beyond words is an abrogation of responsibility—it lets civilians off the hook from trying to understand, and veterans off the hook from needing to explain."
Creating your own narrative can be a powerful way to process difficult experiences. That's true for all of us, whether we're veterans or soccer moms or high schoolers. When we have complicated emotions, ignoring them doesn't help, but finding a way to face them does. We can't say that often enough.View Comments | Add Comment
New Report on Adam Lanza
Nov. 25, 2014 Rachel Ehmke
After the tragedy at Sandy Hook Elementary School two years ago, many of us were haunted by the thought that if Adam Lanza had gotten more attention for his emotional problems, and the right kind of help, the lives he took might have been saved. So it comes as a surprise to learn how many red flags were noticed, and how many efforts at help were directed at him at many points in his life. But not, it seems, the kind of help that might have averted the tragedy he caused.
Connecticut's Office of the Child Advocate recently published a report on Adam Lanza's history to help determine where opportunities were missed and mistakes were made, and to provide recommendations on how future tragedies might be prevented.
One of the points the report made clear was that what happened in Sandy Hook was rare—in fact people with mental disorders are more likely to harm themselves or be harmed by others. But Adam had an atypical preoccupation with violence, and his mental condition was deteriorating rapidly, without any preventative measures and in near-total isolation, towards the end. The report notes Adam was "completely untreated in the years before the shooting and did not receive sustained, effective services during critical periods of his life, and it is this story that the report seeks to tell."
The report makes troubling reading. Adam had significant developmental challenges as a young child, and was referred for special education services as early as preschool. His parents seemed committed to getting him the best help they could, even paying for an independent evaluation. He had Individualized Education Plans throughout his education.
But the problems identified seemed to stop short of behavioral or emotional development challenges, and the report notes that this pattern continued. "This appears to have been the start of a pattern of education evaluation and service delivery that addressed only aspects of AL's cognitive and social-emotional development."
His social-emotional challenges increased dramatically as he got older, but he apparently never received help for them. He developed severe anxiety, including OCD symptoms, but never got therapy (although he was twice prescribed Aquaphor for his hands which were raw from compulsive washing).
When the family visited the Yale Child Study Center for an evaluation, the doctors cautioned strongly against letting Lanza be educated at home:
We believe that there is a significant risk to AL in creating, even with the best of intentions, a prosthetic environment which spares him having to encounter other students or to work to overcome his social difficulties. Having the emphasis on adapting the world to AL, rather than helping him to adapt to the world, is a recipe for him to be a homebound recluse, unable to attend college or work productively into his twenties and thirties and beyond.
But their recommendations were not included in his school record or IEP, and the report says that when efforts to mainstream him failed the IEP team reverted back to the home-based environment that the Child Study Center warned against.
The lack of communication between providers is another point stressed in the report. Lanza saw multiple treatment and service providers in his life: pediatricians, special educators, and out-patient mental health clinicians, but there was no clear coordinator, so diagnoses were overlooked and appropriate services weren't provided.
The person doing much of the coordinating was Lanza's mother, who was in denial of Lanza's needs and thought keeping him at home and accommodating him as much as possible was the best course of action. From the report:
We note that it is not uncommon for parents to vacillate between acknowledging and denying their child's need for services. All children are a little different from each other, and gauging whether a child's differences are in need of outside intervention or special attention at any given stage of development can be daunting to determine.
That's why the report stresses that it is essential to help educate and engage parents in treatment, as well as provide coordination support. Once again we see the damaging effects of isolation—for Adam and his mother, the lack of interaction with a larger family, friends, school or community in those critical years had a devastating effect, and many in the Sandy Hook community paid the price.View Comments | Add Comment
Child Mind Institute 5th Anniversary Gala
Nov. 25, 2014 Caroline Miller
It was an emotional evening for the Child Mind Institute as we celebrated our fifth anniversary last night at the annual Child Advocacy Award Dinner at Cipriani 42nd Street. The evening's honors went to Hillary Rodham Clinton, who received the Child Advocacy Award, and Dr. Thomas R. Insel, director of the National Institute of Mental Health, who accepted the Distinguished Scientist Award.
Both Secretary Clinton and Dr. Insel warmly supported the work the Child Mind Institute does, and Ben Shapiro, a 17-year-old with OCD who was treated at CMI, got a standing ovation for sharing his personal story. Ben described the therapy with Dr. Jerry Bubrick. "Jerry was the guy who rescued me, who got me back to school, back to friends, and back to the basic joys in life." Ben ended with this appeal:
You have an opportunity to help kids get out of the same black hole I was in, to get their lives back. You can determine whether or not the next anxious child will be a cautionary tale or have a happy ending. So ladies and gentlemen, I implore you to give generously. Because quite frankly, I want other kids to be as lucky as I was—to be able to get past their worst day and join me on the other side.
The auction, led by Lydia Fenet of Christie's, raised over $715,000 for scholarships for clinical care at CMI, to raise the evening's total to $6.63 million.
Dr. Insel, the evening's first honoree, applauded the Child Mind Institute's focus on "making sure we not only provide better service today, but that we do the science that will allow us to provide better service tomorrow—and doing that in an open science framework, where everything is sharable accessible and quickly gets disseminated to as many people as possible."
Dr. Insel saluted the Child Mind Institute's Healthy Brain Network for "taking the lead in helping us to understand, as a nation, how these problems begin, how we can detect them earlier, and intervene more effectively." CMI, he said, "is setting the standard and changing the culture of how we to do research."
Letty Cottin Pogrebin, Ben Shapiro, Hillary Rodham Clinton, and Harold S. Koplewicz
Secretary Clinton saluted the efforts of Harold Koplewicz and Brooke Garber Neidich, Child Mind Institute's co-founders, to fight the stigma that still surrounds mental illness. She told a story about the daughter of a friend who was being treated at the Child Mind Institute, who said to her mother: "If I had cancer and I was getting better everybody would be so happy for me. I am getting better, because I now know more about what to do, and I'm getting the help I need, but no one is celebrating that."
Clinton, whose foundation Too Small to Fail also focuses on early childhood development, closed with this:
We need to help the Child Mind Institute draw attention to the mental health needs of our kids, fight to remove the stigmas that keep them in the shadows, and speak up for those parents working their hearts out to get their children the care they need. We need to honor the dedicated professionals exploring the frontiers of brain science and providing cutting-edge clinical care, and keep asking ourselves what more we as cities, states, and our nation can do to continue giving hope to so many who need it.
Kids and Antipsychotics: A Cautionary Tale
Nov. 17, 2014 Caroline Miller
The New York Times ran a disturbing story over the weekend about a mother weighing whether to put her 6-year-old son on Risperdal, along with the stimulant he's taking for ADHD. It's disturbing because putting young children on two medications, especially if one is an antipsychotic, is scary. But it is also disturbing because neither the reporter nor the doctors interviewed addressed the question that should be asked before any treatment is prescribed: What might be behind this boy's problem behavior?
The boy, named Matthias, has mysterious rages, refuses to join activities, and bolts from "adults trying to corral him." This sounds a lot like anxiety. He refuses to do math and word problems in school, and puts his head down on the table. Has he been evaluated for a learning disorder? He melts down when his mother parks in the wrong spot—could he be on the autism spectrum? Does he "explode into fits of anger and despair" because he has sensory issues? There's chaos in Matthias's home life. Might trauma be a contributing factor?
There isn't one voice in this story that reflects best practices in treating a child like Matthias. Before even considering prescribing a powerful drug like Risperdal, a clinician should explore what's going on with this child, whether the initial ADHD diagnosis is correct, and whether structured behavioral interventions would help him.
Instead, Matthias's mother is considering putting him on an antipsychotic so he can avoid special education classes. And the pediatrician treating him makes this lame joke in lieu of a diagnosis: "He's got MSD—Matthias Specific Disorder."
This is a textbook case of why you need to try to understand behavior, not just try to control it.View Comments | Add Comment
Love Hurts Aspie Max on 'Parenthood'
Nov. 14, 2014 Beth Arky
Parenthood fans who were rooting for Max's crush to like him back were crushed themselves when she rejected him on last night's episode. Mom Kristina's fears that her son, diagnosed with Asperger's, would be rejected by classmate Dylan came to fruition. When Max caught her kissing classmate Aaron, Max went on a tear to get him expelled. Later, Max's meltdown led him to physically attack Aaron. Then Max presented a poster to Dylan featuring photos of her; it was his awkward attempt to make a logical case for why they belonged together. Not surprisingly, she rejected him. As kids in the cafeteria laughed at Max, one girl called his presentation "creepy." A distraught Max then bolted from the school.
Throughout, Kristina was in an awkward position, being both a school administrator and Max's mom. (This fact was pointed out to Max by another student played by Sawyer Katims, show runner Jason Katims' Aspie son.) Her role as mother won out, with her comforting a brokenhearted Max, telling him that someone would like him back one day.
Cheryl, whose 9-year-old son Roo is on the spectrum, says she was in tears throughout the episode. It was hard enough trying to help her neurotypical son understand "matters of the heart," she said; having to "explain it to a very literal and socially awkward-thinking person" is even harder. She says Kristina "handled it like a champ. I thought the fact that she recognized and acknowledged how much courage it took [for Max] to tell Dylan how he felt and completely humiliate himself was amazing."
One mom who was diagnosed with Asperger's at the same time as her daughter, now 16, says watching Max's story unfold was rough. "We have already seen how Max applies his logic to peer relationships. So it's no surprise that he takes the connection Dylan has made with him beyond what she is comfortable with. It's something I have seen time and again with my own kid. Anyone who is nice is classified as 'friend,' even though the relationship is not reciprocal."
Unlike Cheryl, she has mixed feelings about the messages Kristina gave to Max. "She needs to acknowledge that how he came across, so strongly and unexpectedly, is perceived as creepy. It did make Dylan uncomfortable. He did ignore her saying she wanted him to stop. Our kids, especially our boys, need to understand that they must not ignore such words." On the other hand, she applauded Kristina for being calm, supportive, naming his feelings and praising his courage.
Lisa, whose describes her autistic son Kye, 5, as "a ball of love, energy and sensory issues," says that while he has come a long way since being diagnosed 18 months ago, he still struggles terribly with social skills. "Sometimes I am overwhelmed with sadness when Max experiences pain because he doesn't understand the little social cues that most people take for granted. At my son's young age, I can already see him not quite getting it and can only imagine how that will affect his future success. I worry that his kind heart will be laughed at, that people won't look past the diagnosis and take the time to know the sweet soul behind it."View Comments | Add Comment
Designing for Dyslexia: A More Readable Font and a New Dictionary
Nov. 12, 2014 Rachel Ehmke
Two tools designed to help dyslexic people have been getting attention recently. One, a dictionary, is being designed by a father and son team Neville and Daryl Brown who say the way most dictionaries are organized—by alphabetical order—is difficult to navigate for dyslexics who struggle with phonics and spelling. The Browns are organizing their dictionary instead by common word components, or "morphemes." For example, in their dictionary the words signature, resign, and assignation will all be listed together because they share the morpheme "sign."
It seems confusing, but Daryl Brown says that their new method is helpful because it "bypasses the requirement to learn words by sounding them out" in favor of recognizing the root parts of words. And it won't be just dyslexics who benefit. He continues:
The meanings of words will be prevalent in our dictionary. Whilst we believe it will be an invaluable tool for dyslexics, it will also give children and adults without the learning difficulty a greater understanding of the origins of our language, enabling them to grasp the true meanings behind parts of words and make greater sense of a language that we learn verbatim, but never question.
Another innovation, a font called Dyslexie, is being featured at a design festival right now in Istanbul. The font was created by designer Christian Boer, who is dyslexic himself, and claims that Dyslexie is easier for some people with dyslexia to read.
Most children with dyslexia have phonological deficits, which means they struggle to understand the sound structure of words. This means they have difficulty identifying phonemes, which are the smallest sound units that make up words (e.g. the "ch" sound in chair is a phoneme) as well as recognizing rhymes. But there is also a smaller subtype of children, who have poor visual processing—for example they might accidentally flip or skip letters. This is the group that Dyslexie is aiming to help.
Boer, the designer of Dyslexie, says traditional typefaces make the tendency to flip or skip letters worse. In an effort to prevent this, Dyslexie letters look more grounded because they have a heavier bottom half—something Boer says makes dyslexic readers less likely to flip them. Some letters are also tilted slightly, to make it easier to distinguish between, for example, b and d or i and j. To make words clearer letter openings are also larger, there is more space between letters and words, and the font color defaults to blue.
Finding a font that makes reading easier for dyslexics who struggle with visual processing is an ongoing quest. In 2013 researchers compared several fonts in a study to see which were more readable to people with dyslexia. The researchers used eye-tracking and comprehension tests to evaluate readability. From the study researchers isolated three characteristics dyslexics should look for in a font:
1. Monospaced (all letters occupy the same horizontal width)
2. Roman (letters are upright-not slanted, in script or italic)
3. Sans serif (the letters don't have "feet")
Helevetica, Courier, Arial, Verdana, and Computer Modern Unicode all tested positively. Interestingly, another font specifically designed for dyslexic readers called OpenDyslexic did not lead to better readability or faster reading.
Although it wasn't included in the study, Comic Sans is also anecdotally considered easier to read for people with dyslexia. Some teachers also prefer to use Comic Sans because it resembles the handwriting children learn in school.View Comments | Add Comment