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Thursday, February 9th, 2012
Margret Ericsdottir, of Iceland, has a 14-year-old son named Keli. Keli has severe autism and cannot speak. (That’s Keli in the photo.) In 2010, Margret made a documentary about her son and her quest to understand what’s happening in her son’s mind and other children like him. You can watch the trailer here.
Through a stroke of luck—or fate—involving both the First Lady of Iceland and the wife of the former British Prime Minister, Tony Blair—”A Mother’s Courage: Talking Back to Autism” ended up being narrated by Kate Winslet. As Kate says in the March issue of Ladies’ Home Journal, “I knew I couldn’t just lend my voice to this documentary and go home.” She forged an immediate friendship with Margret and Keli, and together they created the Golden Hat Foundation to raise awareness about children and adults with autism—specifically those who are nonverbal and whose abilities are mistakenly believed to be severely limited.
I was honored to meet Margret yesterday at an event hosted by Ladies’ Home Journal (our sister publication) to spread the word about the Golden Hat Foundation. Its first high-profile project is a book called The Golden Hat: Talking Back to Autism, out March 27. The book was all Kate’s idea and the premise is simple: She’d send one of her favorite hats to celebrities, who had to take a self-portrait with it and provide one quote that was important to them. She got everyone from Oprah Winfrey to Conan O’Brien to Leonardo DiCaprio to Michael Phelps to Meryl Streep to participate.
The book contains a breathtaking section featuring the first thoughts communicated by nonverbal children, which were articulated on a letterboard used to spell out words. Keli’s: “I am real.” An 11-year-old girl named Carly’s: “Teeth—hurt—help.” Keli now writes poetry on his letterboard, and among his poems is one about a hat who speaks for a boy with autism who cannot talk. It’s called, of course, “The Golden Hat.” (And in a bizarre coincidence, Kate didn’t know about that particular poem when she came up with her book idea.)
Margret was effusive in her praise for Kate Winslet, calling her “a light in the darkness.” She said that with Kate’s help, the Golden Hat Foundation is progressing rapidly (“nothing moves slowly with her”). She also shared a wonderful video clip from a visit Kate and her children made to Margret’s home in Austin, Texas; they spent Thanksgiving together in 2010. In the clip, Kate is meeting other nonverbal children with autism, mostly teenage boys. One boy, thanks to his letterboard, tells her she’s beautiful; she gives the camera a wink and a thumbs’ up, and repays the compliment right back to him. We saw footage of Kate giving Keli a big bear hug when he told her he loved her—and we all laughed, since Margret had told us that Keli really, really doesn’t like being hugged. She said it was a struggle for Kate not to embrace Keli for their book cover shoot—but if you look closely at the photo above, you’ll see that Keli reached out to hold Kate’s hand.
Aside from helping society understand how intelligent nonverbal kids with autism can be, Margret and Kate have a more tangible goal: to build assisted-living campuses where children and adults with autism can live, learn, and work. I don’t know if anyone at yesterday’s event wasn’t in tears when Margret read an email to Kate that said, in essence, “I cannot leave this place until I know that my son has somewhere to go.”
If you’d like to help support the Golden Hat Foundation, click here. You can pre-order the book here. And for those of you who will be in NYC on World Autism Day, Monday, April 2, you can meet Margret and Keli at the United Nations Bookshop for a book signing. (Wondering how Keli will sign books if he can’t write? His mom wondered the same thing. His answer, via letterboard: “Stamp.”)
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A Mother's Courage: Talking Back to Autism, autism, Golden Hat Foundation, kate winslet, Ladies' Home Journal, Margret Ericsdottir, nonverbal autism, The Golden Hat: Talking Back to Autism | Categories:
Babies, Behavior, Doing Good, GoodyBlog, Health & Safety, News, Your Child, Your Life
Wednesday, October 19th, 2011
Attention Deficit Hyperactivity Disorder (ADHD) is a neurobehavioral disorder that is more commonly diagnosed during childhood. Children diagnosed with ADHD are unable to focus or stay still for a long time and act impulsively. According to the CDC, an average of 5.4 children (9.5%) between ages 4-17 have been diagnosed with ADHD, and boys are more likely to be diagnosed than girls (13.2% vs. 5.6%). ADHD is also a more common term than Attention Deficit Disorder (ADD), although both are still used interchangeably.
This guest post was written by Ben Glenn, the author of “Simply Special, Learning to Love Your ADHD.” In grade school, he was diagnosed with dyslexia and other learning disabilities, but he wasn’t diagnosed with ADHD until an adult. Glenn travels the country and the globe, sharing his personal experiences with ADHD. He resides in Indianapolis with his wife and two children. For more information, visit www.SimpleADHDExpert.com.
Despite the amount of press, websites, and books explaining Attention Deficit Hyperactivity Disorder (ADHD), it is still one of the world’s most misunderstood psychiatric disorders. At its simplest, ADHD is the inability to sustain attention, and the person who has it is generally restless, fidgety, impulsive, and struggles with sustaining productivity. The deeper issue is that people with ADHD have problems with the part of the brain that controls executive functions (also known as the pre-frontal lobes of the cerebral cortex), such as initiating tasks, knowing when to put on the brakes, transitioning easily from one task to another, being systematic and maintaining order, self-monitoring and controlling one’s emotions, and holding onto information vital to completing a task.
While the bulk of scientific data about ADHD has increased in the last quarter century, ADHD is not a new disorder. In fact, it has been around for decades (some speculate even centuries). ADHD was officially recognized in British medical literature for the first time in 1902 (it was labeled as “morbid defect of moral control“) and has, since then, undergone several more name changes (including minimal brain dysfunction). The 2013 revision of The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders might see yet another name revision. While the exact definition of ADHD is still evolving, there is no doubt that ADHD is real and affecting the lives of millions of children and adults. I am one of them.
I wasn’t diagnosed with ADHD until I was an adult because I didn’t have the “hyperactive” element, but the schools did catch my dyslexia in third grade. I hated being labeled. Going to a Special Education classroom was hell. I was teased and treated like a dummy. I struggled with things that were easy for everyone else and done in no time at all, I was walking around feeling like a mistake, like a loser with no future. For a while I really lost all hope. This is a terrible way to grow up.
Children and adults with ADHD get a bad rep for being lazy, unmotivated, disorganized, and unable to complete any task on time. Relationships suffer because people with ADHD tend to blurt out what’s on their mind without thinking or lose interest in the middle of the conversation and wander off. While we all have moments where we display these behaviors, the important distinction is that people with ADHD literally can’t help being this way most of the time. It’s not a matter of trying harder to be better. It’s a neurobiological inability to do so. ADHD is also not the result of bad parenting or “broken homes” or lack of parental attention and discipline. While these may worsen the symptoms of ADHD and negatively impact a child’s behavior, ADHD is not caused by any of these things. Research has shown that ADHD symptoms are caused by brain chemistry. ADHD may also be genetic, which supports some beliefs that ADHD is more “nature” than “nurture.”
However, ADHD is one of the most treatable psychiatric disorders and has one of the best outcomes for anyone who gets the right kind of help and support from understanding parents, friends, teachers, and doctors. Thankfully there were teachers who helped and supported me. I credit them for restoring some of my self-confidence. The rest of the credit goes to my wife, my sympathetic enforcer!
Read More About ADHD on Parents.com
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Wednesday, September 21st, 2011
My almost-five-year-old’s transition to a new school–her “big-girl school”–has gone as well as we could have hoped for. She says she likes it, the teacher keeps telling us that Adira is “doing great,” and she doesn’t seem overly exhausted in the evenings, despite a considerably longer school day.
However–not surprising, but still frustrating for us–she utterly refuses to ever tell us anything about what happened during the day, what she did or learned, or who she played with. I know it’s normal, and I try not to push her too hard to spill the beans, and I respect that she wants or needs this space for herself. Occasionally, we get lucky and she volunteers a tidbit about something she learned or relates a story from school.
I thought this impulse was fairly universal. But while dropping her off this morning, I heard a couple of the other parents chatting with the teacher, mentioning all the wonderful things their kids had told them about the school day. It was nice to know they, you know, do stuff during the day, a fact I presumed but had been starting to doubt. Still, annoying to have to hear it third hand. Apprently, some kids do talk about their days to their parents.
One funny thing Adira did tell us about school: There are a lot of children from other countries in her class, and after Day 2, she reported, “I was playing with some kids in the playground, and they were talking, but I didn’t know what they was saying.” We explained to her about foreign languages, and assured her that everyone would get to know each other and learn how to understand each other. She seemed unconvinced and a bit disturbed that they wouldn’t just talk English. As for me, I was just glad to hear something about the school day.
Does anyone have any recommendations on how to get our kids to tell us more about what happens, good or bad, during the day?
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Friday, September 2nd, 2011
In our October issue, out any day now, we have a special report by Darshak Sanghavi, M.D., called “Understanding Autism.” In it Dr. Sanghavi, a member of the Parents advisory board, explores what is and isn’t known about autism’s causes, how the condition is identified and diagnosed, and the growing trend among researchers to focus on early intervention to help children with autism succeed.
What many parents of young children will want to know, of course, is how they can tell whether their child might be at risk for autism (note that they do not diagnose). And there are two important tools available to help moms and dads do just that—fairly simple questionnaires that take only a few minutes to complete. As we explain in our story:
Perhaps the most common one is the Modified Checklist for Autism in Toddlers (M-CHAT), which can be used on children starting at 18 months of age. It consists of two dozen Yes/No questions such as “Does your child ever use his finger to point, to ask for something?” If two or more answers indicate problems, the test usually is considered positive.
A relatively new tool, the Infant-Toddler Checklist, helps determine whether a child from 6 months to 24 months is at risk for autism or a developmental or language delay. Its reliability hasn’t been studied as extensively as other tools. As with M-CHAT, it does not diagnose; it’s meant to help pediatricians decide whether they should refer a child for further evaluation.
Some of the questions might freak out parents needlessly. For example, the M-CHAT asks if a child seems “oversensitive to noise” or wanders “with no purpose,” which are both normal behaviors for many toddlers. But for the purposes of the screening test, it doesn’t count if the action has happened only once or twice — it needs to happen regularly. If you feel uneasy as you answer the questions, try not to panic. But do talk to your pediatrician, who will help determine what you should do next.
Always remember: A positive test doesn’t necessarily mean your child has autism, just as only a fraction of women with a positive mammogram will go on to have an abnormal breast biopsy. “It’s very likely, though, that a child who tests positive has some kind of delay that can benefit from early intervention,” says Geraldine Dawson, Ph.D., chief science officer of Autism Speaks, the country’s largest autism science and advocacy group.
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autism, autism speaks, autism spectrum disorder, developmental delay, Infant-Toddler Checklist, language delay, M-CHAT | Categories:
Babies, Behavior, GoodyBlog, Health & Safety, News, Your Child
Monday, August 29th, 2011
Don’t believe what you hear from most New York City residents about Hurricane Irene being a dud. Our corner of the city felt the storm’s wrath, and it left more fallen limbs, uprooted trees, and dangling electrical wires than I care to think about. Yet somehow, my older daughter declared yesterday “the best day ever.” And she’s got a point.
It didn’t start off that way. All of us were woken at around 4 a.m. Sunday morning by what sounded like a small army angrily marching across our roof. It must have come from a bunch of branches coming down all at once, but we frankly weren’t sure. Adira told us she was scared, and we admitted that we were a bit worried, too. I think she appreciated our sharing in and validating her feelings–and appreciated even more the super-rare invitation to sleep in our room. And then something near-miraculous happened: She actually slept, solidly, for a few hours. We expected her to be up, either worried about the storm or excited at the prospect of sleeping in our room, but we all got some needed rest.
The day picked up from there. We managed a morning walk around the neighborhood, and built a tent in her room, where she read books, played games, and had a snack. Thanks go to a Caillou episode for the idea. We cooked applesauce and baked cupcakes, something healthy and something not, and she pretended to open a restaurant. Our next-door-neighbor came over for a visit, and I got out for a late-afternoon walk with the baby.
We didn’t hear even once during the day the mantra so often repeated on other lazy days, “I’m bored.” Maybe we were better prepared, having expected to remain indoors all day. Or maybe when faced with the reality of the storm and the damage she saw, Adira knew on some level she needed to make the most of it and not complain.
The best day ever? Maybe not for us adults. But as things go, it was a pretty darn good one. I am proud of Adira for making the most of it, and will think back with some (tiny, begrudging) bit of fondness on angry Irene.
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Thursday, July 7th, 2011
As adults, we may laugh amongst ourselves when curses are used in a childlike context (see “Go the F–k to Sleep’“), but it’s less funny when a child is cursing out of context.
In a new study commissioned by Care.com, parents believe their children are cursing more than they themselves did as kids. Of the 700 parents who participated in a recent online survey, 86% believe that kids ages 2-12 have loose lips when it comes to unmentionable words…and 54% said their children had actually cursed in front of them.
In some cases (12%), the kids were just repeating a parent’s curse word and 20% didn’t believe their kids understood the meaning of the word. Eight out of ten parents also confessed to cursing in front of children, even though 93% also tried to suppress the urge to do so. Along with blaming themselves, parents also cited other reasons why their kids picked up curses: daycare, playgroups, older siblings, television, games, and movies.
According to Dr. Robi Ludwig, Care.com’s Parenting Expert and psychotherapist, “cursing is something that is definitely going to happen, and parents should know this is something to expect and not a reflection of being a bad parent. However, there are steps parents can take to stop the language before it continues, from creating consequences to monitoring the TV shows and movies your kids watch to correcting houseguests and encouraging the use of alternate words.” A few more of Dr. Ludwig’s tips to prevent cursing include: don’t overreact, be honest, nip it in the bud, and don’t be tempted by YouTube fame. (So, parents, put away the recording camera!)
How vigilant are you about not cursing in front of the kids? What are your tips and advice for dealing with or preventing cursing?
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Behavior, Care.com, children, curse words, cursing, kids, misbehavior, parenting, parenting skills, parenting style, parents | Categories:
Behavior, GoodyBlog, News, Your Child
Thursday, June 23rd, 2011
By now, you’ve probably heard of the latest publishing world sensation, a slim title with a seemingly kid-focused cover and the not-for-kids title Go the F–k to Sleep. The book, written by Adam Mansbach and illustrated by Ricardo Cortés, mimics the cadences and rhythms of a children’s book, mixing heartwarming and sleep-inducing images–”The wind whispers soft through the grass, hon. / The field mice, they make not a peep”–with the vented frustration of a parent hoping against hope that his or her little one will finally settle down: “It’s been thirty-eight minutes already. / Jesus Christ, what the f–k? Go to sleep.”
Funny, right? I thought so. My wife thought so. The thousands of people who made this book #1 on Amazon even before it was published must think so.
But Katie Roiphe doesn’t think it’s funny. Writing in Slate, she points to what she sees as “a certain nastiness” in the book, an “anger or hostility [that] is aimed at children.” It is, to her eyes, the tale of parents who’ve wrapped their lives so tightly around their children that they can see nothing else beyond the nursery walls and long, fruitlessly, for some TV time with their spouses. To these parents “full of rage,” Roiphe puts her closing bit of advice in the mouth of the book’s fictional kids: “If those sweet-faced children, so gorgeously drawn by Ricardo Cortés, could talk back would they say: ‘Put on a f—ing dress. Have a f—ing drink. Stop hovering over us. Live your own goddamned life.’”
But where Roiphe sees the rage of repressed dreams, I see something else entirely. (more…)
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Monday, June 13th, 2011
This past weekend, The New York Times published an article about the gender identity/gender confusion debate that has been an ongoing national focus this year.
While it’s nothing new that little boys (particularly toddlers and preschoolers) “cross” gender stereotypes by wearing dresses, playing with dolls, and wearing neon pink nail polish, what’s new is how parents are handling their kids’ interests.
Instead of forcing boys to conform to gender stereotypes, more parents are supportive and letting their kids express themselves. Whether a child really is gay or not or just exploring different interests, parents are keeping an open mind and letting kids grow up confident in their own interests and choices.
As a parent, what are your thoughts?
More about gender identity on Parents.com
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