The Child Mind BlogBrainstorm
Stress and the Special Needs Parent
July 18, 2012 Beth Arky
Parents—especially mothers—are constantly bombarded by the latest "best" way to raise children. These range wildly from the strict, pushy Tiger Mom to the laissez-faire French Maman. Now comes a study reported on Forbes.com that parenting styles affect parents, too. The more "intense" your style of mothering, it seems, the greater your own risk of stress and depression.
The study, based on an online survey of 181 mothers with children age 5 and under, used several measures of "intensity," including whether you feel mothers are more "necessary and capable" than fathers, whether you feel it's your job to provide the most stimulating activities for your child, and whether your child's needs and wants should always come before your own. The study found several of these factors linked to lower life satisfaction and greater depression and stress. While parenting per se didn't put mothers at risk, "aspects of intensive mothering beliefs are detrimental to women's mental health."
It makes sense that moms who give their all to their children and lose sight of their own needs would eventually end up depressed, especially if their children—and spouses, potentially—come to take it for granted. Yet implicit in the study is the idea that these mothers have the option to lighten up on their intensity.
We can't help thinking of mothers caring for special needs kids, whether they have ADHD, autism, sensory processing issues, disruptive behavior, anxiety, or learning disabilities. I daresay many of these moms would be happy to relax a bit, but their children need intense parenting and constant attention. It's not optional.
These are often moms who've had to earn an unofficial PhD in their child's diagnosis, and whose job descriptions include being caregiver, case manager, and advocate. It can take tireless work to connect with the right doctors, teachers, therapists, online resources, and other moms fighting the same fight. They're wrestling with tough issues like medication and bullying, struggling to manage difficult behavior, find the right school, set up play dates, and find experienced sitters, often leaving a paying job to focus on their child's care. It's easy to see why special needs moms would be at risk for stress and depression. (There's a reason Sunday Stillwell named her popular autism blog Adventures in Extreme Parenthood.)
With this in mind, autism mom blogger Alysia Krasnow Butler (Try Defying Gravity) launched something called the Oxygen Mask Project. The name refers to the idea that if your plane is going down, you put on the oxygen mask first so you can help your child with hers. The site offers an important message: "It's time to realize that when parents take care of themselves first, it's not selfish. It's survival.... We're not talking spa vacation. We're talking sitting down for a meal. Drinking our coffee when it's hot." There, parents may share how they are making lifestyle changes to make mental health a priority.
No one is saying that parenting typically developing children isn't stressful. (As one mom of two once told me, "It's the hardest job you'll ever love.") But when your child has special needs, the job intensifies—and with it the need to help moms keep their heads above water.View Comments | Add Comment
Amy Poehler Says Smart Girls Have More Fun
July 17, 2012 Rachel Ehmke
Who can resist Amy Poehler? She's a charming, infectiously funny lady, and she's the star of one of the best shows on television right now. For a long time she's been one of our favorite actresses, and now because of her online TV show and website, Smart Girls at the Party, she's one of our favorite people, too.
In each episode Poehler, the show's host, interviews a girl about something she's passionate about. Past interviews have included Anna the nine-year-old who loves yoga, Rachel the twelve-year-old robot engineer, Valentine the eleven-year-old gardener, and Ruby the seven-year-old feminist. The girls aren't chosen because they are the best at doing yoga poses or keeping orchids alive, they're chosen because they're interested in interesting things, and that's pretty cool. Poehler begins most episodes by saying, "We celebrate extraordinary individuals who are changing the world by being themselves." And did we mention the theme song's refrain is "Smart girls have more fun"? It's a nice message for tweenage girls, and the show is as fun and kooky as everything else Poehler does. But my favorite thing about Smart Girls is the way Poehler genuinely tries to meet these girls where they are. The best example of this is probably the new Smart Girls series called "Ask Amy," in which girls can submit questions and Poehler will answer them on video. The first question comes from a 14-year-old who wants to wear makeup but her father says she's too young. "How am I supposed to feel as pretty as my friends who are allowed to wear makeup?" she asks.
Poehler answers the question like the world's greatest big sister. Her show might be all about celebrating girls who are comfortable being themselves, but being yourself while still fitting in with the group can be a hard line to walk, and Poehler was thoughtful when she gave her answer. She hit all the right points—she said 14-year-olds are naturally pretty without makeup, but she also sincerely empathized with how it feels to get left out of something new and exciting. Ultimately she suggested the girl try to have an adult negotiation with her father about trying just a little bit of makeup, and her answer felt spot-on. The 14-year-old inside all of us was comforted. (Plus Amy offered to talk to the girl's father.)
Happily, Smart Girls at the Party is just starting its second season. We think you and your daughters should check it out—you won't be disappointed. Here's a preview below:View Comments | Add Comment
Child Mind Institute Billboard at Penn Station!
July 13, 2012 Child Mind Institute
Children's mental health is front and center outside Penn Station, with this amazing billboard that is unmissable by anyone who passes by.
Letting the world know that mental health matters is our mission, and we thank Jordan Schaps of Van Wagner, the team at BBDO, and our own Nancy Duan for taking that message to one of the busiest intersections in New York City.
At the Child Mind Institute we're doing everything we can to make people more comfortable talking about childhood psychiatric and learning disorders, and the importance of seeking help for kids who are struggling. Now, with this exciting new billboard, we're spreading our message of health, hope and answers to millions of New Yorkers. Thanks again to our amazing partners and all of our friends for this huge show of support.
If you're in New York we encourage you to head over to 33rd Street and 7th Avenue to check it out!View Comments | Add Comment
A Child's OCD, a Mother's Journey
July 13, 2012 Caroline Miller
There's a very moving story on the New York Times website written by the mother of a 9-year-old girl who has OCD. The writer, Beth Boyle Machlan, herself has a history of depression and bipolar disorder, so she thought, naturally, that she would be very alert to any signs of distress in her little girl, whose name is Lucy. But Lucy's anxiety took her mother by surprise. One day she said simply, "You know how Ella Enchanted had to do things even if she didn't want to? Sometimes I feel like I have to do things, too." It turned out that Lucy had secretly developed elaborate rituals of counting, and lining things up to alleviate overwhelming fears of something terrible from happening to her parents, or herself. "She had to be sure her dolls' eyes were closed or her stuffed animals' faces turned away when she went to bed, or they might kill her in her sleep."
Machlan's story of coming to terms with Lucy's disorder is candid and insightful—shedding light on the way children can struggle with intense OCD without really showing symptoms, and how it can be treated with behavioral therapy called exposure and response prevention. When the doctor who treated her started working with Lucy, her mom was astonished at the sheer power of the anxiety, and the need to get things "just right" to "fix" it. We've seen OCD completely shut down a child's life and, we're happy to say, we've seen treatment, often a combination of medication and behavioral therapy, dramatically reduce that power and give a child back her childhood. We note that Lucy's treatment was at the Child Mind Institute, with a behavioral psychologist named Dr. Clark Goldstein, and we're glad that Machlan's experience—and Lucy's, of course—was a positive one.
And we're glad that Machlan has shared the story—and that Lucy, who read and approved her mother's piece, was brave enough to share her experiences for the benefit of other kids and families. One of the best parts of working at the Child Mind Institute is meeting a kid who has struggled with a psychiatric disorder, learned methods to cope, and decided that talking about it is the next logical step. Thank you Lucy, Sophie, and Dolly, among others.View Comments | Add Comment
A 'Bad Mother' Gene?
July 9, 2012 Harry Kimball
We have a saying around the office that goes something like this: "Bad parenting doesn't cause psychiatric, learning, or developmental disorders. But exceptional parenting can make all the diference for kids who struggle in these areas."
I'm reminded of this by a study claiming to have identified a genetic difference linked to a mother's levels of "sensitivity, supportiveness, and responsiveness." Researchers from the Hebrew University of Jerusalem say that one version of the gene AVPR1A can lead to "lower levels of maternal gentle guidance" and less engagement from a mother, according to Discovery News. What's more, the authors say, the same variation or "allele" of this gene has been previously linked to autism. In a nutshell: moms with this gene are distant and unsupportive, and the kids they pass it on to are at a higher risk for autism.
On his blog, thAutcast, Landon Bryce is appropriately incensed. "Blaming women is almost always good for business and credibility," he snipes.
"I thought we were decades beyond this," one commenter adds, and it certainly does hearken back to the midcentury "refrigerator mothers" theory of autism, except now it is genetic.
Bryce, who has self-diagnosed Asperger's and is a fierce advocate for people on the autism spectrum (and often for the families that care for them), is also angry at the suggestion that there is something "bad" about being a spectrum-y Mom, and that it could possibly be to the detriment of their children.
"And what to do about these genetically inferior mommies who ruin their kids by acting too autistic?" Bryce wonders. "Medicate and train away their differences, of course." He then quotes the study authors, who suggest parent training to help "bad mothers" to counterbalance their unfortunate genetic inheritance.
I think it is worth making two points. First, everyone needs help parenting sometimes, particularly if you are parenting a child with a psychiatric disorder or special needs or who is, as Bryce likes to say, not neurotypical. Parents come with all kinds of temperaments, and when kids are having problems, parents all over that spectrum may find that changing their parenting style or improving parenting skills can make a big difference.
But secondly, the study does paint an unsettling, deterministic picture of a straight line between mothers genetically predisposed to cold, aloof parenting and kids with autism spectrum disorders. The news stories Bryce shares on his own site show just how wide-ranging the relationship between parents and their autistic offspring are. There are the lurid stories of mothers who kill their children, and uplifting stories of moms who lay it all on the line to get their children the best early interventions to help them reach their potential. In the face of this evidence, genetic determinism seems naïve.
"The influence of most genes is not set in stone," one of the researchers says. That is true of kids getting early intervention, sure. But it's also true of moms and dads.View Comments | Add Comment
50 Cent and 'Looking Autistic'
July 5, 2012 Rachel Ehmke
50 Cent recently drew the ire of the autism community with a series of stunningly ignorant posts on his Twitter account. In response to an Internet heckler, the rapper tweeted, "you look autistic" and later, "i dont want no special ed kids on my time line." The closest he's come to an apology was tweeting, "just kidding."
There is no "looking autistic," as the actress and autism advocate (and autism mom) Holly Robinson Peete pointed out in her eloquent open letter. "Do you even know what autism is?" she asked 50 Cent before pointing out its prevalence (1 in 88 kids) and showing a picture of her own son, who has autism and loves rap music and looks exactly like any other kid except maybe more handsome, since he has inherited Robinson Peete's good looks. It seems likely that 50 Cent doesn't really know what autism is, and he was unfortunately using it as the new, edgier version of "retarded" for an easy joke.
But by now he knows he hit a nerve. People are widely sharing Peete's letter and their own photos of what a child with autism looks like, as well as calling for a boycott of his music. 50 Cent had been building a reputation as a philanthropist and person who cares about the welfare of children worldwide, but he hurt a lot of kids with his careless words. We're looking forward to an honest apology because "just kidding" is a joke.
UPDATE: We're very happy to report 50 Cent deleted his offensive tweets and later posted:
I realize my autism comments were insensitive, however it was not my intention to offend anyone and for this I apologize.
50 Cent has over 7000 followers on Twitter, and of course many more people read about his apology elsewhere online. It's good to see his response and even better to see word getting out.View Comments | Add Comment
Do Meds Mean We Don't Know Who 'Me' Is?
July 3, 2012 Harry Kimball
Katherine Sharpe was in college, in the late 1990s, when she had a "prolonged anxiety attack" that left her laid out with panic and despair. A visit to the campus health center led to a prescription for antidepressants. Did they work? "Work they did," she writes in the Wall Street Journal. "My dread burned off like valley fog in the sun, and my tears dried up as decisively as if someone had turned off a spigot. Soon I felt less anxious and more sociable than I could ever remember being."
Since then, she notes in her piece titled "The Medication Generation," kids with psychiatric disorders are being identified younger and getting treated earlier. But this gives Sharpe pause. "These trends have produced a novel but fast-growing group—young people who have known themselves longer on medication than off it.
This is an insight not to be taken lightly. We know from research and clinical experience that properly monitored medication can make all the difference for kids with crippling anxiety, impairing impulsivity, or depression that can shut a person down—that it can change the trajectory of lives. Sharpe does not dispute this. "Drugs undoubtedly help many young people who are genuinely struggling," she writes. What she worries about is over prescription.
"The expanding use of psychiatric medication in youth over the last 20 years has meant that the drugs are now prescribed in less and less severe cases," she writes. "In fact, it's tempting to see the rapid spread of these medications less as evidence of an epidemic of youthful mental illness than as part of a broader social trend toward aggressively managing risk in the lives of children and teens."
Here is where we must part company with Sharpe. There is absolutely nothing wrong with "aggressively managing risk in the lives of children and teens." In fact, we owe it to the next generation to intervene early and stave off the often dire effects of untreated mental illness later in life. Yesterday, we read that spanking may slightly increase the risk of developing a psychiatric disorder in adulthood. Do you know what confers a greater risk? A psychiatric disorder in childhood.
Sharpe is right to look critically at the use of medication in children, and to wonder if there are augmentative or alternative therapeutic interventions. These are the thoughts of any caring and competent mental health professional. And, as she notes, the need to continue medication should be reassessed periodically. A good clinician is always alert to the fact that kids who've been treated with medication, as they develop, may no longer need it.
For those who do take medications long term, she sees the risk that, "lacking a reliable conception of what it is to feel 'like themselves,' young people have no way to gauge the effects of the drugs on their developing personalities."
No one should be dissuaded from recognizing this risk, and the difficulty of forming a clear identity when you're growing up with a psychiatric disorder. But we have another saying around the office. "Yes, there are risks to treatment. But there also risks to not treating." In the end, we must weigh the risk with the reward.View Comments | Add Comment
Special Needs Parents vs...Patent Law?
June 21, 2012 Harry Kimball
Parents of a nonverbal four-year-old with developmental delays have had a very painful lesson in patent law recently. First, the background: an iPad app called "Speak for Yourself" enables their daughter Maya to speak to them for the first time in her life.
"We are hanging on her every word." her mother blogged. "We've learned that she loves talking about the days of the week, is weirdly interested in the weather, and likes to pretend that her toy princesses are driving the bus to school (sometimes) and to work (other times). This app has not only allowed her to communicate her needs, but her thoughts as well. It's given us the gift of getting to know our child on a totally different level."
The trouble is that the upstart developers of Speak for Yourself, a couple of speech pathologists, are being sued by a more established firm, the Prentke Romich Company, for patent infringement. The Speak for Yourself app isn't cheap, at $300, but it is much, much more affordable than the four-or-five-figure dedicated hardware the Pretke Romich sells for what is called alternative and augmentative communication (AAC). Speak for Yourself is also very, very similar in function to the hardware Prentke Romich sells, according to the suit. Though it hasn't worked its way through the courts yet, Apple pulled Speak for Yourself from the App Store last week, according to Disability Scoop and Ars Technica.
Maya's mom, Dana Nieder, describes on her blog how her family tried many different communication methods for Maya, including Pretke Romich products, before finally finding success with Speak for Yourself. Now she's terrified that the lawsuit might rob her daughter of a very important, if not all-important, tool. Nieder now has two iPads loaded with the offending program on airplane-mode-lockdown, worried that it might go missing into cyberspace.
Prentke Romich may have legitimate claims against Speak for Yourself. And Apple has reserved all sorts of rights to summarily pull things from the App Store. But as far as I know they've involved things like racy picture apps, not a device critical to the well-being of people with communication deficits. This is a different ballpark, and I have to assume the parties are hard at work on a resolution to avoid the suffering, not to speak of the backlash, that will result if these businesses don't figure out a way to work together.
Neider will be making as loud a noise as she can to see that that happens. "The fact that my daughter's ability to speak is becoming a casualty of a patent battle between two businesses is beyond my comprehension," she writes on her blog.