In a welcome piece of good news from Washington today, the Department of Health and Human Services has proposed major new regulations to help protect children in child care centers and family child care homes. “Many children already benefit from the excellent care of high-quality child care providers who are meeting or exceeding the proposed requirements,” said HHS Secretary Kathleen Sebelius. “However, too many children remain in settings that do not meet minimum standards of health and safety. These basic rules ensure that providers take necessary basic steps to shield children from avoidable tragedy.”
I met recently with parents whose children had died in child care because these types of regulations did not exist. These parents have been working to help make sure that a similar tragedy wouldn’t happen to other families, and their advocacy has paid off. Child Care Aware of America has led the charge for safety and quality improvements, and we’ve been privileged to partner with them on their efforts. Most parents would be shocked to learn about the current minimal standards.
For all child care providers who accept federal funding through the Child Care and Development Fund, the new regulations would require:
Health and safety training in certain areas
Compliance with state and local fire, health and building codes
You might not like some of her movies. You might think she’s a little out there (at least during those Billy Bob Thornton years.) You might be a little peeved that she can take care of six kids and still look poised and breathtakingly beautiful all the time.
Whether you like her or not, one thing is for sure: Angelina Jolie is a hero. She’s using her celebrity for good by telling women with a genetic predisposition for breast cancer that they are not alone. Some may fear dealing with tough decisions alone, not realizing there are thousands upon thousands of other women who completely understand what they’re going through.
In today’s issue of The New York Times, Jolie publicly shared her very personal decision to have a prophylactic double mastectomy. As she says in her op-ed piece, “I choose not to keep my story private because there are many women who do not know that they might be living under the shadow of cancer. It is my hope that they, too, will be able to get gene tested, and that if they have a high risk they, too, will know that they have strong options.”
Jolie’s letting women around the world know that they no longer have to live in fear of breast cancer. They have options. They can determine cancer risk by testing for a BRCA mutation and taking charge of their health in ways that previous generations never could. Jolie knows this all too well. When she tested positive for a BRCA1 gene, she knew she had an 87% risk of developing breast cancer and a 44% chance of developing ovarian cancer. She knew she was a previvor — someone who has not had cancer but who has a high risk for developing it. Since her mom died of ovarian cancer just six years ago, Jolie knew that it was a major red flag that there might be a BRCA mutation in the family. After finding out that she did inherit the mutation, she decided to do something about it.
Of course, there are naysayers: “I can’t relate to Angelina Jolie. She’s a celebrity with endless resources. Her life is nothing like mine.” But getting a double mastectomy is a very difficult, personal decision for any woman, as I learned interviewing the five women featured in my book, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions, all of whom had to make choices — some had surgery, some did not — just like Jolie. Sure, she may be a famous, multimillionaire engaged to Brad Pitt, but Jolie’s still a woman taking steps that can potentially save her life. And, as a mother, Jolie decided she would do what she needed to do to protect her children (just like any mother would). She is showing women that, after surgery, it is still possible to look and feel feminine and whole. She is also showing women that it’s possible to make tough decisions and still have the support of a loving partner.
I thank Jolie for sharing her story and for encouraging women to learn about the ways they can protect themselves. She is incredibly brave for doing so, particularly since her journey is not over. Thank you, Angelina Jolie, for putting such a public face to the word “previvor.”
I am lucky not to have any food allergies, but I still want to make so many of the delicious-sounding recipes in Elizabeth Gordon’s new book, Simply Allergy-Free: Quick and Tasty Recipes for Every Night of the Week. Just looking at the gorgeous photos in the book, you’d never know that ever recipe is free of gluten, dairy, soy, eggs and nuts. Author of the blog My Allergy Free Life and owner of the online allergen-free bakery Betsy & Claude Baking Company, this busy mom of two girls has multiple food allergies. She says, “I like to think of these recipes as the little black dress of my pantry—simple and economical fare that can be dressed up or down depending on the occasion.”
She shows you how to use (and where to buy!) key ingredients like xanthan gum, agave nectar, superfine rice flour, powdered vanilla rice milk, and sorghum flour, which can make gluten-free and allergen-free foods taste like “the real thing.” The recipes I can’t wait to try include chicken tikka burgers, chickpea French fries, beef tostadas, corn quinoa salad, herbed biscuits, and chocolate pretzel pie. Yum!
It’s been said that “a mother is only as happy as her least happy child,” and it’s so true that children’s mental health affects the whole family. If your child suffers from anxiety or depression or ADHD, you want to get her the best treatment just like you would if she had diabetes or asthma or cancer. And yet, stigma still does exist, and can get in the way of addressing a child’s problem. In our recent survey of more than 1,600 parents conducted in partnership with the Child Mind Institute, 48% said they think parents are to blame for children who exhibit disruptive behavior.
In the wake of the tragedy in Newtown, there has been a call for improved mental health care—and mental health advocates are seizing this opportunity to talk about the importance of effective diagnosis and treatment. Indeed, our survey found that 60% of parents are concerned that kids who have a mental illness like Asperger’s Syndrome or depression are more likely to hurt themselves or others, and 61% of parents said that parents of children with mental health problems should not be allowed to have a gun in their home. However, the truth is that most violent crimes are not actually committed by people who are mentally ill, and kids with mental health issues can grow up to lead happy, productive lives when they get proper care.
“The Newtown shooting has lead to a national conversation about mental health—not just to prevent potential violence, which is very rare, but to prevent suffering, which is very common and often very treatable,” says Parents advisor Harold Koplewicz, M.D., president of the Child Mind Institute. “What we hope will come from the tragedy is openness that starts in each family and community, when we acknowledge our worries about our own children, and help make other parents feel safe enough to speak up about their worries, too.”
One piece of good news from our survey: 66% of respondents do believe that parents are now more likely to seek help if their child’s behavior worries them. We’ve also been encouraged to learn that an increasing number of pediatricians now have mental-health professionals working right in their office. Not only does that make access to care easier, but it sends a message that mental heath is just as important as physical health.
You can participate in the Speak Up For Kids campaign and learn more from the online events being hosted by the Child Mind Institute in honor of National Children’s Mental Health Awareness Month.
One of my most vivid childhood memories is when a boy in my elementary school had to undergo chemotherapy treatments for cancer. When he finally returned to class cancer free but with a bald head, his best friend decided to buzz off his own hair as a show of support. Even at such a young age, the friend understood how difficult it is to be the only one without a full head of hair.
Flash-forward many years later, and I’m happy to report that haircare company TIGI, which also owns popular brands Bed Head and Catwalk, has partnered with a non-profit called Children with Hair Loss. CWHL provides annual customized hair replacements and styling services, at no cost, to anyone under the age of 21 with medically-related hair loss. The goal is to empower as many children as possible by increasing their self-confidence and restoring one aspect of normalcy during a time when things are anything but normal. So now when you purchase a TIGI product you can feel great knowing that not only are you taking care of your hair, you’re helping a child regain his.
There’s been a steady stream of gun tragedies involving young kids. This one could be the worst: On Tuesday, a 5-year-old Kentucky boy shot and killed his 2-year-old sister with his own gun. The .22-caliber Crickett rifle, a child-sized model, was a gift that the boy received on his birthday last November. The firearm, marketed as “My First Rifle,” is one of many children’s firearms made by Milton, Pa.-based Keystone Sporting Arms LLC, according to USA Today, and comes in colors including blue and pink.
Although teaching children to use rifles may be an age-old tradition in parts of this country, 2-year-old Caroline Sparks’ death should serve as a stark warning of the dangers of allowing children access to firearms.
The first few times I saw news reports about 3D printing, I thought it was pretty ingenious. People could use it to build 3D models of vases or even, a 3D model of a fetus from an ultrasound.
But now, I’m completely blown away by what it can do. This past weekend on CBS News Sunday Morning, they showcased how scientists are using 3D printers and living cells to craft new human tissue. So far, they’ve used it to build tumors from cancer patients’ biopsied tumors, which will enable them to easily grow several copies of the tumor and test out a number of different treatments at once, to figure out what’s going to work best on each patient’s particular cells. But the other application they showcased is the one that intrigued me more: They grew a human ear.
You see, my daughter was born with microtia, a birth defect that impacts her ear. She has a normal ear on her left, but her right ear is small and misshapen, and there’s no ear canal. So far, it hasn’t impacted her life too much—she hears pretty well (better if she actually wears her hearing aid), she has both of her ears pierced, and other than a few questions from her classmates, it’s pretty much a nonissue for her. We love her “special ear,” and she knows it’s just something unique about her. But I know how kids can be cruel, and I worry that as she hits the teen years, she’s going to become self-conscious about it.
Right now, there are two ways people can replace a microtic ear with one that looks more like a traditional ear. They can get a prosthetic, which looks more natural but usually has to be removed for bathing, swimming and sleep. Or they can go through a series of several painful surgeries to sculpt a new ear, using either Medpor, a medical-grade artificial scaffolding, or a rib graft. But the results of the plastic surgery aren’t always great, and I’ve seen too many ears that look “off.” I wouldn’t subject my daughter to that without her being totally on board with it.
But with the 3D printing, a sample of cells could be cultured, then “printed” out in the exact shape of her ear. She could have a brand new ear in a few weeks—and it would simply be one surgery to remove the microtic ear and place the new ear beneath the skin.
What’s even cooler is this new bionic ear that someone else created, an amalgam of the 3D printing using living tissue and technology. So maybe she can skip the hearing aid and hear on her own, through her new bionic ear.
I’m already dreaming up ways that this technology could eventually be used—to grow new body parts for people who lost a finger or a hand. To build new kidneys or a new lung for someone in need of a transplant. To repair a broken spinal cord. But right now, I’m just focusing on that miraculous homegrown ear.
Image: Lawrence Bonassar, associate professor of biomedical engineering at Cornell University, with an artificial ear grown using 3D printing, by Lindsay France/Cornell University
So many moms do such a fantastic job of helping fellow parents understand what it feels like to have a child with autism. It’s not quite as common to hear from the dads, is it? (Of course, there are great exceptions, like Autism Daddy.)
A writer I’ve worked with, whose 5-year-old son has what his doctor describes as a “severe” autism, alerted me to her husband’s new blog, which was created during a weekend he spent in a Milwaukee hotel. A “sane-cation,” he called it, because he was starting to feel like he was losing his mind: “My wife checked me in yesterday because she could see–even if I could not–that I needed to get away. To get away from the three hours of sleep a night. To get away from random screams that could be words but for some neural-gastrointestinal-immunological quirk. To get away from the hours of my son literally crawling the walls as I sit in impotence and despair. To get away from autism, even if only for two days and two nights.”
The getaway (and I use that term very loosely) did provide some clarity: “Autism culture–rightly–focuses on concentrating not on who your child could have been, but on who your child is: difference not deficiency. I believe in this culture, but I wasn’t ready for it… I needed to mourn, to release the anguish that comes whenever our visions of our lives create dissonance with the reality of our lives.”
And then he zeroed in on what he feels is the biggest difference between moms and dads whose children have autism: “[Men] cannot speak with one another. We cannot speak with our larger families. We feel racked by guilt as we look at our wives and just can’t pull it together, can’t be strong in the ways they need us to be. We self-destruct. Drink. Smoke. Cheat. Scream. Run. We need to mourn. We need to talk…”
Finally, he explained how he saw his new role: “Mourning is about transition. I’m transitioning now… I will move on. I will become a ‘Kick-Ass Autism Dad.’ For my autistic son, my neurotypical son, my wife, my larger family, I will move forward. For other autism dads, I will move forward, say the things that we shouldn’t say so that maybe one more dad can hear another voice and can mourn as he should, not as permission to live in despair, but as acknowledgement that things are different than we first imagined.”
For those of you who can relate, what’s your experience been? What resources are available to dads? Do they (or do you) utilize them? Who’s the “Kick-Ass Autism Dad” in your life?