When your child takes his own life, what on earth do you do? For Denis Asselin, the answer has been to walk. For seven weeks and for more than 525 miles, Denis will have stopped along the way at some of the schools, homes, and hospitals that played a pivotal role in the life of his son, Nathaniel.
Nathaniel Asselin, the exceptionally handsome young man at right, suffered from obsessive-compulsive disorder (OCD) and body dysmorphic disorder (BDD), which is when an imagined or slight flaw in one’s appearance becomes all-consuming. Up to 80 percent of people with BDD attempt or commit suicide; Nathaniel died in April 2011, at the age of 24. As difficult as his life was, it was filled with bright spots and much love. He and his younger sister, Carrie, shared an extraordinary bond, and he had a tight circle of close friends. Nathaniel was also a volunteer with his local EMS, and a middle-school cross-country coach beloved by his team.
Denis has found an incredible way to honor the life of his son and to raise awareness for BDD in particular. You can read a day-by-day account of his journey on his blog—and for those of you in Massachusetts, you might check out Denis’ route and track him down to say hello as he wraps up his final days of walking. This Thursday, June 7, the emotional odyssey will end in Boston, at a rally at Christopher Columbus Waterfront Park from 11:30 a.m. to 2:30 p.m. If you’re unable to attend, you can still show your support for OCD and BDD by making a donation to the International OCD Foundation, and note that your contribution is in the memory of Nathaniel Asselin.
As part of the coverage of the 2012 Presidential election, Yahoo! News has debuted “Remake America,” a webseries profiling six families as they try to reclaim the American dream. Each week, another five-minute episode puts a personal spin on issues like unemployment, foreclosure, and the mounting healthcare costs that are so common in today’s economy. But they’re not going it alone—each family gets help from career gurus, personal-finance experts and medical professionals as they fight to make ends meet. Viewers can connect by sharing their own experiences on dedicated comment threads or voting for which step each family should take next. Check it out below.
Do you think these videos paint an accurate picture of America today? How are these issues affecting your family?
I’m offering a guest post today from my sister Molly. She works for Event 360, which helps organizations use events to create a better world. One of its biggest events is the Susan G. Komen 3-Day, which has raised nearly $600 million in the fight to end breast cancer. She just wrote a great post about her experience helping my daughter raise money for the American Heart Association’s Jump Rope For Heart program (that’s her in the photo, jumping away), and I think there’s so much here for parents to think about.
I’ve written before about how I’m the go-to fundraiser in my family. Previously, I was helping my cousin raise money for juvenile diabetes. But today I’m writing about how I helped my 6-year old niece, Julia, raise money for heart disease.
I received an email from my sister stating, “Julia’s learning about children with heart disease and wants to do her part to help. She’ll be participating in Jump Rope for Heart. In addition to raising money for the American Heart Association, your donation will help Julia’s school win free physical education equipment. And the class that raises the most gets to have lunch and recess with the gym teachers–another big incentive for Julia! Thanks for any amount you donate.”
I went directly to Julia’s fundraising page only to discover that her fundraising goal was set to $200. Not only was it entirely too low for my liking, but she had almost reached her goal. As a result, I didn’t really feel compelled to donate.
Here’s what happened next:
Me: Please increase her goal to $500 and then I’ll make my donation Sister: How about $300? I don’t plan to hit up many people! I figure we have a lifetime of these asks ahead of us. Me: $500 Sister: Yes ma’am. Me: Donation made.
I can’t stress enough the importance of setting a challenging goal and updating it as you get closer to hitting it to ensure people will still feel compelled to donate. Within one day, and with the help of Facebook status updates from her three aunts, Julia’s fundraising went through the roof and she had met her fundraising goal. Within two days, Julia raised $615 and became the top fundraiser in her 1st grade classroom.
If you’re looking to engage children in fundraising, here are some tips you’ll want to consider:
Make the message as simple and relatable as you can. Julia understood that it was as basic as asking people for money, spending some time jump roping and she’d be helping people she’d never meet.
When engaging children, use video as much as possible to show them who they’re helping and why. Julia remembered the name of the girl in the video – Britney – and could even describe how her heart sounded (with a “whoosh”). More than that, she understood that what she heard wasn’t normal or the way your heart is supposed to sound. The video helped her connect and stay connected to Britney.
Connect the activity to the cause. In the video they played at school to engage Julia and her classmates, they witnessed Britney getting better and even being able to jump rope. Julia was really impressed that Britney could now jump rope and learned that jumping rope would make her own heart strong too.
Incentives work for all sorts of people as my friend Jill Stewart recently shared and this couldn’t be truer for children. Even better, when you’re dealing with tiny humans, they don’t need anything that costs money. The thought of winning lunch with her teachers was enough to keep Julia focused on the task at hand! And then, Julia was rewarded for all her hard work when she learned that the teachers changed their mind and instead of just inviting the top class, they decided to also invite a few other big fundraisers. She was psyched to get an invitation from her gym teachers to join them for lunch for being the top fundraiser in her class! These kinds of things cost nothing and go a very long way with children.
Take any opportunity you have to remind children that we all share in the responsibility to help people who aren’t as fortunate or as healthy as we are.
The bottom line is that there’s no age requirement when it comes to fundraising. In fact, the top fundraiser in Julia’s school was in kindergarten! Regardless of your age, there are important and valuable lifelong lessons that fundraising can teach you. Why not start early?
I’m curious: Have you helped your child with fundraisers? How did it go? Which causes are dear to your family, and why?
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.”)
This Sunday, October 9, my family and I will be watching “Growing Hope Against Hunger,” a one-hour Sesame Street special designed to raise awareness about hunger in the United States and its impact on children. (Click on the screen to watch a behind-the-scenes video.) This is a topic we pay close attention to at Parents (see our story and the accompanying mini-documentary), and it’s one that the folks at Sesame Street have been addressing for quite some time. They have an initiative called Food For Thought which offers resources that provide assistance, powerful videos of families affected by hunger, and much more. This primetime special is the latest step, made possible by funding from Walmart. It’s hosted by Brad Paisley and Kimberly Williams-Paisley and features a new Muppet named Lily, who sometimes needs the services of a food pantry. The special also features four families who candidly share their own experiences in needing help getting enough to eat; they are the heart of “Growing Hope Against Hunger” and their stories will move you.
Every family with children as young as preschool-age can benefit from watching. Dr. Jeanette Betancourt, the senior vice president for outreach and educational practices at Sesame Workshop, told me that the special has two important missions: to continue to provide hope and strategies to those experiencing food insecurity, and to teach those who aren’t affected that they can play a role and help others. The goal is to jumpstart a meaningful conversation, whether it begins with “This is happening to our family, and we’re not alone” or “This is happening to families in our community, and there’s something we can do to help.” Families who don’t have enough to eat feel very isolated, she said. I especially liked what Dr. Betancourt said about the very act of talking about the problem: “It allows you to move forward.”
I’ll be honest: Hunger is not an issue I’ve ever explained to my daughters, who are 6 and 3. As a parent, I’m so glad to have a show like this to introduce the subject in a clear, compassionate way and to talk about how we can make a difference. Click here to find out when and on what channel the show will air in your area.
Okay, I have to end by showing this picture of me and a certain lovable, furry monster. I got to meet him over the summer when I visited the set of Sesame Street (career highlight!) to watch the filming of “Growing Hope Against Hunger.”
Next month is Down Syndrome Awareness Month, and to help celebrate, the National Down Syndrome Society (NDSS) will hold Buddy Walks in more than 250 communities around the country. The goals of the Buddy Walks are to promote acceptance and inclusion for people with Down syndrome and to raise funds for local programs. This Saturday, September 24, my uncle, Chris Burke, will attend New York City’s Buddy Walk in Central Park.
Chris is best known for playing Corky on the TV show “Life Goes On” from 1989-1993. Since then, he’s made lots of TV appearances, traveled around the world speaking to families, and since 1994 he’s served as NDSS’ Goodwill Ambassador. (Chris is a big part of why I feel so strongly about people misusing the word “retarded.”) That’s us in the picture, with his mom and my grandmother, taken during one of our many vacations together. This one was in Key West when I was about 6 and Chris was probably 13.
NDSS has a cool program called My Great Story, which honors those who have Down syndrome by sharing stories that highlight their achievements. I was touched that Chris chose to write about his dad (my grandfather); I also love the story NDSS founder Betsy Goodwin wrote about her daughter, Carson, otherwise known as “The Mayor of Main Street.” Carson works as a greeter at Sephora and sometimes Betsy will park outside the store to watch the reactions of the customers as they come and go. She loves to see how many of them leave smiling: “If I had been told 30 years ago that my new baby would spread so much good will, it would have made those difficult first months a little easier,” she writes. “But then, of course, one never knows what each baby’s particular gifts will be. We only know that each will have some.”
To participate in a Buddy Walk near you—and by the way, you don’t need to know someone with Down syndrome to walk—click here. Take a few minutes to be inspired by the loving entries in My Great Story. And if you do have a loved one with Down syndrome, share a story of your own.
This summer I met an incredibly inspiring woman named Alesia Shute (that’s her in the photo). When she was 7, she was diagnosed with colon cancer. Throughout the rest of her childhood and early adulthood, she endured six major surgeries and several minor ones, spending months in the hospital. Today she is a happily married mother and grandmother and the head of The Alesia Shute Foundation, which has a mission of improving the lives of families facing childhood disease. She says she has dedicated her life to giving back “because I am here, because I beat the odds, and because I can.” Alesia also wrote a book about her life called Everything’s Okay: My Journey Surviving Childhood Cancer, and, timed with Childhood Cancer Awareness Month, a comic-book version has just been published, ideal for tweens and teens. Alesia donates a portion of her proceeds from her books to The Children’s Hospital of Philadelphia, where she was treated.
I asked her what she’d tell parents whose children are facing a diagnosis. She quickly said, “Do your homework”—but added that even if you don’t like what you find, never lose hope. “I’m almost glad the Internet wasn’t around when I was going through this, because my parents would have given up. The odds were so against me, they wouldn’t have pushed for me to get the next surgery.”
Approximately 12,400 children each year are diagnosed with cancer. Their families are thrown into a world they want no part of and yet they have to quickly learn to navigate it. A book like Alesia’s can give parents and older kids a preview of what they may endure—and more importantly, a whole lot of hope.
Unfortunately I’ve had breast cancer on my mind in a big way this summer. My mom is an 11-year survivor, having been diagnosed at age 47, which is why my gynecologist has been gently pushing me for the past two years to get tested for the breast cancer (BRCA) gene. But then it became clear that it’s really my mother who should be tested for the gene; if she had it, then my three sisters and I definitely would also get the test. For whatever reason, we were all–minus my doctor–taken aback when my mother’s results came back positive. She has the BRCA2 gene (there is also a BRCA1 gene).
You may ask what a lot of people have asked: But what does that mean? It means that her chances of a breast cancer recurrence go up dramatically, as does her risk of developing ovarian cancer. It means that decisions need to be made about how to help prevent a diagnosis, whether through vigilant screening or surgery to remove the risky body parts. It means each of her four daughters have a 50 percent chance of also having the gene.
So we’ve all started the testing process. I don’t have the gene. Neither does my younger sister. Another sister is waiting until the fall to get tested. But my other sister just learned that she does have the gene, and even though she lives in California and we only see each other a few times each year, we happened to have been together when she got the call. I won’t get into details about what that was like, but to say it was painful is an understatement. And now my sister, who is 32 and hasn’t yet had children, is faced with all kinds of big questions about what she should do with this information.
Meanwhile, a childhood friend was diagnosed with breast cancer last month. A mother of three, she will have a double mastectomy this week–she has since learned that she, too, is a carrier of the BRCA gene–and then begin 16 weeks of chemo. And we still have the results of my third sister’s test to get through… not to mention those of my mom’s sister and brothers (yes, men need to be tested too, as their risk of both breast and prostate cancer jumps if they have the gene).
Then there’s the matter of my job. I’m a health editor for a magazine for women and we’re currently producing our October issue. In other words, there’s no shortage of breast cancer-related information swirling around. I think back to a conversation I had earlier this summer with Susan Love, M.D., the president and medical director of the Dr. Susan Love Research Foundation. It was an honor to speak with her; Dr. Susan Love’s Breast Book was what everyone in my family consulted when my mom was diagnosed. Hearing her say things like, “We can be the generation that stops breast cancer” was not just inspiring–it was reassuring, coming from someone with her knowledge.
Dr. Love has a mission to discover the cause of breast cancer. And to that end, she’s joined with the Avon Foundation for Women to create an Army of Women. The goal is to recruit 1 million women–those with a connection to breast cancer and those without–who will participate in research that will eventually eradicate the disease. To join the Army, you simply provide some basic information and then wait to be contacted about studies you can participate in. When you’re contacted, you either join the study or not–your call–and you’ll hopefully tell a friend about it so that she may consider joining. I’ve joined the Army and it just feels good to know I’m doing something about this disease that seems to hang over so many of us. If you, too, feel powerless in the face of breast cancer, maybe this is the cause for you. In addition to their web site, you can find the Army of Women on Facebook.