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What to Watch Tonight

Monday, June 24th, 2013

Up for a feel-really-good movie? Tonight on HBO, a documentary called “Miss You Can Do It” premieres. It goes behind the scenes of a beauty pageant in Illinois called Miss You Can Do It, which is for girls ages 4-25 who have physical and mental disabilities. It was created by a former Miss Iowa, Abbey Curran, who has cerebral palsy. No matter your feelings about pageants, I’m almost positive you’ll love the idea behind this one: For one weekend, every girl–no matter how she’s viewed by the rest of the world–is appreciated for her strength, her determination, and yes, her beauty. And these girls truly are beautiful, with a profoundly positive spirit. In the film, we meet several of the 2011 contestants and their families and get a glimpse into their everyday lives at home. I honestly can’t describe the parents in a way that does them justice–you have to hear them speak for yourself to appreciate how inspiring and honest they are. We learn what life has been like since their child was born and about the many health-related setbacks and victories they’ve had along the way. By the time we see footage of the pageant, where every girl is recognized and one is crowned Miss You Can Do It, you understand why an event like this is life-changing for everyone involved.

We first heard about the movie from our friends at Easter Seals, which has provided services for several of the contestants. Thanks to Easter Seals, children like 8-year-old Ali (pictured here during the “casual wear” portion of the contest), who has spina bifida, have gotten occupational and physical therapy, not to mention emotional support from the experts on staff.

Check out the pageant’s official site to learn more. It celebrates its 10th anniversary this year; there’s an entry form on the site in case there’s a future Miss You Can Do It in your life. In the meantime, watch this beautiful film tonight. And if you read this after June 24, DVR it–HBO will be airing it all summer.

 

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The Children You Never Hear About

Wednesday, June 12th, 2013

There’s a large group of kids in this country who aren’t discussed very often. They’re the 2.7 million children whose parents are incarcerated. That works out to 1 in 28 children–or roughly one child per classroom. Did you have any idea so many kids are experiencing the fear and confusion and embarrassment and sadness that come with having a parent in jail or prison? I didn’t.

When our friends at Sesame Street learned about them, they took action. “We started to realize how many children are impacted and no one is talking about it,” says Jeanette Betancourt, Ed.D., vice president of Outreach and Educational Practices, Sesame Workshop. “No one is representing the needs of children and caregivers and the parents themselves.” So this became the focus of Sesame’s newest installment in its resiliency initiative, Little Children, Big Challenges: Incarceration. Launching today, it’s an entire set of resources in English and Spanish including a DVD and video series, storybook, activity pages, tip sheets for parents and caregivers, as well as an app (available on IOS and Android platforms).

The goal of the initiative is twofold. One is to help caregivers–parents, grandparents, extended family members, foster parents–realize they’re not alone and that it’s important to talk to children about their situation. The tip sheet mentioned above provides caregivers with the best language to use with young kids and how to help them manage their emotions. The other aim is to help the incarcerated parent connect with his or her child. In the video, which includes the stories of real children, we meet a young boy who, with his father and sister, draws pictures for his imprisoned mom (that’s them in the photo above). She then colors them and mails them back, and this simple ritual has become very meaningful.

Watching the videos, you can’t help but wonder how to help these children. But it’s less about help and more about support, explains Dr. Betancourt. “This is a very isolated community–many families don’t necessarily want to talk about it. But if they do open up, the best thing you can do is simply support that family. It’s not even doing something ‘special’–it’s just being friends, just as you would with any other family.”

As always, Sesame will work hard to make sure their materials get into the right hands, giving them directly to prisons, family courts, and national and local organizations that help affected children. What’s so amazing about all of Sesame’s toolkits–and there are more than 20, on topics including divorce, healthy eating, and preparing for an emergency–is that the contents are completely free. They’re not on the actual “Sesame Street” TV show, but everything’s available online and can be downloaded here. If you know one of the millions of children who have an incarcerated parent, please encourage her caregiver or teacher to take a look.

Image by Gil Vaknin, courtesy of Sesame Workshop, 2013

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Why Aren’t We Doing More to Help Kids With Cancer?

Tuesday, June 11th, 2013

Growing up, I don’t remember ever knowing about a child who had cancer. These days, I know of many. That’s probably more due to the internet than actual numbers; the American Childhood Cancer Organization says that the incidence for some types of childhood cancer have increased only slightly since the 1970s. Blogs like Rockstar Ronan (one of our Blog Award winners this year) introduce us to the families who’ve been dealt the awful hand of childhood cancer, and in that way, lots of us now know about children with cancer.

I want to share the story of another child, Brooke Healey, pictured here (and further below). Her parents, Steve and Stefani, grew up with my husband; Steve is one of my brother-in-law’s closest friends. Another special connection we have to Brooke is the fact that she was born on the exact same day—September 3, 2008—as my younger daughter.

In January, seemingly out of nowhere, 4-year-old Brooke was diagnosed with diffuse intrinsic pontine glioma (DIPG), a tumor in the middle of the brain stem. Its location and the way it grows into the nerves means it cannot be removed. One researcher described the prognosis as “dismal, with less than 10 percent of the patients being alive 2 years from diagnosis.”

Because Steve and Stefani are both very active in their community—he as a longtime teacher and coach, she as part of her family’s wonderful music and performing arts school—and because a child with cancer touches absolutely everyone who hears about her, the Healeys have been flooded with support. It’s come in the form of financial help, emotional support, daily meals, t-shirts and bracelets and car magnets, fundraising events, a trip to Disney from Make a Wish, and most recently, a few Brooke-inspired tattoos.

The Healeys have been extremely generous, too—they blog about their journey and let us in their world. Steve’s posts are a marvel: detailed, direct, sometimes even funny. And Stefani is a woman of few online words, but when she posts, boy, she makes it count. Right after the diagnosis, when she and Steve made the excruciating and very risky decision to have Brooke’s tumor biopsied in the hopes of learning more about treatment possibilities, she wrote, “Am I comfortable with the decision? I will never be ‘comfortable’ again.”

Brooke underwent six weeks of radiation at Memorial Sloan Kettering Cancer Center in NYC. It was meant to relieve her symptoms and give the family—which includes Brooke’s 6-year-old brother Ashton and 2-year-old sister Bryn—a reprieve. That hasn’t happened. In fact, Brooke has had many health scares along the way. She has trouble breathing and walking unassisted, and the steroids she’s been taking has made her extremely uncomfortable and rendered her almost unrecognizable, as you can see from this photo taken a few weeks ago:

In the midst of all this, Steve has been exploring every possible lead on treatment options. It seems that if there is a person in this world who has information about DIPG, he has contacted them. As a direct result of his tenacity, Brooke will have some tests next week at the National Institutes of Health to determine her tumor’s progression.

Obviously, the Healeys’ main goal is for their child to get better. But they also want to get the word out about DIPG and raise important questions. Why is so little known about such a deadly cancer? Why is childhood cancer in general so underfunded? It’s unsettling, to say the least, to learn that in 2011 breast cancer researchers received $625 million from The National Cancer Institute, a government organization, while pediatric cancer—all forms—received a total of $197 million in research dollars. A pessimistic but popular theory behind the disparity is that since children can’t vote, they’re simply not as important to politicians, who have a say in determining how much money is allotted to research. Another possible reason: It’s hard to get funding for projects that seem unlikely to have a positive outcome.

Are you wondering what can you do?
·     This change.org petition to boost funding is looking for 1 million signatures. They’re a looong way off. So signing that is a good first step.

·     You can share this incredible video about DIPG.

·     You can visit BrookeHealey.com and leave a message of support for Brooke and her family or make a donation (because there’s no clinically tested treatment, insurance covers very little).

I’ll end with an excerpt from a recent post by Brooke’s mom:

I am thankful that Brooke is at preschool today, and wanted to stay extra long for lunch. I am thankful that her teachers accept her there and stay longer for her and get extra help for her to facilitate her needs. I am thankful that the kids accept her and that if they ask a question about her appearance the teachers answer in a way that makes it as painless for Brooke as possible.

I am thankful that her teachers from every year that Brooke has been in school still care for her so much. When I pull up to her old school, and her new school, and see Believe in Brooke magnets on cars, I am literally stopped in my tracks. When I see a random third-grader wearing an “I wear Grey for Brooke” shirt, I get choked up. When a fifth-grader rings our doorbell and drops off money from his school project that was about Brooke, or another little girl sends us the money from her lemonade stand to help Brooke, or a class of fourth graders send us a packet of homemade cards… I am so thankful that we get to witness this.

I am thankful that we have a tentative plan in place to get Brooke to summer camp with an aide. I hope she can go and I hope she has a good time.

I am thankful that Ashton and Bryn are so caring. Ashton wants to help her so much. He treats her like gold. And Bryn wants to help her too. She rubs Brooke’s hair and says “cute.” Brooke then proceeds to smack her. Brooke has always been the one in charge and she doesn’t want sympathy from anyone… haha! She does enjoy telling Ashton what to do for her, though. That still fits into her personality just fine. And he jumps to it. He always has.

I am thankful that I know so many think about us, care for us, pray for us. It does not go unnoticed. I do not know everything that everyone has done… but I learn more everyday. It helps.

I am thankful that Steve and I can still work together to care for our kids. And we have even gone out to dinner.

I am thankful I have made it to the gym a couple of times.

I am thankful I have all three of my kids with me, that we packed three lunches today.

I am thankful that we still have hope that it is just taking her extra long to recover from radiation and that she will continue to improve.

Brooke is the smartest, wisest girl I have ever met. (Of course.) She asks questions about medical equipment that are uncanny: “Why are they using that color needle for my port?” WHAT??? I don’t know!!! And “I’d like to learn sign language so that if I have trouble finding my words, I will be able to tell you what I need.” Ummm… OK??? She has already mastered quite a few signs. She is able to manipulate almost any situation to get what she wants. She calculates how she will do it, and then carries it out. It is a full time job for me to negotiate around her to make sure we are always doing what is best for her. She remembers EVERYTHING. She is thoughtful, kind, beautiful, wise, silly, and she knows how many people care for her. In her heart, she does know.

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A Scary Disorder Linked to Strep Throat

Wednesday, May 29th, 2013

Last week, Grant Acord, a 17-year-old student in Oregon, was arrested on charges of attempted aggravated murder, among other things, after police found evidence supporting their suspicion that he was planning to build a bomb and blow up his school. Yesterday, his mother said in a statement that her son suffers from “PANDAS, a rare form of OCD.”

A few years back we ran a story about PANDAS, which stands for pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections. Our article contained several examples of young children who had been developing completely typically until a strep infection triggered a radical change in their personality and behavior, marked by the same characteristics as a severe case of obsessive-compulsive disorder (OCD). Though the condition is supported by experts as well established as Susan Swedo, M.D., chief of the pediatrics and developmental neuroscience branch at the National Institutes of Mental Health (NIMH), it’s a controversial one; many doctors don’t believe it exists.

Meanwhile, the parents whose children are diagnosed with it–and the children themselves–suffer terribly. They watch their son or daughter turn into a different child. They struggle to understand how to calm their child’s fears and how to protect their other children from the physical harm the affected child often inflicts. One mom we interviewed for our story had to quit her job to care for her son, and sell her home in order to pay for his treatment. For parents like these, and the parents of Grant Acord, the controversy surrounding the diagnosis isn’t nearly as important as simply finding an effective treatment. (In some cases, antibiotics helps to ease symptoms.)

Researchers are studying and revising what’s known about the condition all the time. In fact, last year, NIMH changed the name PANDAS to PANS–for pediatric acute-onset neuropsychiatric syndrome. The new name was designed to create a broader category of OCD that isn’t directly linked to strep.

The story in Oregon, which technically has a “happy” ending, brings up important points. One is that it’s crucial for children with mental health issues to get the right help. And another is that we need to teach our children to do what Grant Acord’s classmate did when he thought something seemed strange: He spoke up, and may have prevented an awful tragedy.

 

Image: Girl at the end of a tunnel via Shutterstock.

 

 

 

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Do You Know a “Kick-Ass Autism Dad”?

Monday, April 22nd, 2013

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?

 

Image: Happy father and son playing on sky background via Shutterstock.

 

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What Parents of Kids Without Autism Can’t Understand

Thursday, April 11th, 2013

Because it’s Autism Awareness Month, I feel like it’s worth revisiting a story we posted last fall, about my friend’s sister. She has four children, ages 15, 13, 8, and 4. This woman’s 13-year-old son has a severe form of autism and a mood disorder with psychotic episodes; doctors have told his parents that their son is a very unusual case. As a result, life is extremely challenging for the entire family. Because their son is prone to frequent and uncontrollable outbursts, they’re all having a particularly difficult time in the condo complex where they moved not long ago for his mother’s job as a biotech scientist. Her heartbreaking Facebook post, which she allowed me to share, strikes me as the kind of thing every parent should read, particularly if he or she doesn’t have a child with autism–or any other disability or mental illness.

“I would like to say something to those people in our community who look at my husband, myself, and our disabled son in disgust or shout out your windows for us to just keep him quiet. He is a minor inconvenience to you. You get to go back to your lives, travel as you please, eat what you please, and go about your merry way. Imagine what it is like for us, constantly struggling to keep our son safe. Imagine what it is like for our other three children, whose friends’ parents won’t allow them to come over while our son is home, who are constantly told they can’t go places because it’s too difficult, and who often can’t make their needs heard above his yelling. But most of all, imagine what it is like for our son, whose level of anxiety is so great, whose suffering is so enormous, that he is driven to cry, driven to scream, driven to bang his head and bite his arms and legs. Have you ever in your life felt so much pain that you were driven to that? Be grateful for what you have, for being born with a normal functioning brain, and maybe you would consider being helpful instead. We could always use a home-cooked dinner, an offer to take one of our other children to a movie, or just a smile of support.”

Another reason I wanted to post this again is because right now, the story has a happy ending: Her son is on a new medication, one that has made a tremendous difference in his mood and behavior. As she explains, “I had almost given up when we found the right drug. I know it might not last forever, but at least we get to have a somewhat normal life for a while.”

Image via Shutterstock.

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Guilt-Free Easter Candy?

Monday, March 25th, 2013

We get lots of packages here, promoting all kinds of products. Some of them are innovative; lots of them are not. But even when the product is really cool, the accompanying pitch letter is rarely anything memorable. They almost never make us laugh. But last week a box of candy arrived with the letter you see at right, and it cracked me up.

“… For years, I have been hopping around giving out candy, and I never read the labels. Well, recently I did, and it make my fur stand straight up. I have been a bad, bad bunny…”

The candy, from a company called UNREAL, prides itself on making the classics (Snickers, Milky Way, M&Ms, etc) but with fewer ingredients and more natural ingredients. No corn syrup, no hydrogenated oils, and so on. These remakes have fewer calories and fat and sugar, too–but UNREAL’s serving sizes are also slightly smaller, so this wouldn’t be the main reason you’d make the switch.

This is all well and good, you’re saying, but how does the candy taste? The “faux” Snickers and Milky Way bars were good. But the UNREAL version of a peanut butter cup is what rocked my world. As a PB cup enthusiast, I’ve had every non-Reese’s version there is. Nothing has compared, but I swear, UNREAL’s, known as “UNREAL 77,” might actually be better. I say this as someone who’s had the crushing disappointment of biting into a Reese’s only to discover that the peanut butter is totally dried out and powdery. (Fellow PB cup lovers: Is there anything worse?) Each of the UNREAL cups were filled with creamy peanut butter that didn’t taste overly salty.

Before you stock up for Easter, see if you can get your hands on some UNREAL, and do your own taste test. Find out where it’s sold here.

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One Mom’s Wish For Her Son With Down Syndrome

Thursday, March 21st, 2013

To help honor World Down Syndrome Day, we asked Colette Cosky, a mother of two and a marketing executive in San Diego, to share her thoughts. After her son was born with Down syndrome, she founded the organization Down Right Awesome and helps raise awareness and support for Down syndrome research.

For me, World Down Syndrome Day is an opportunity to broaden everyone’s perception of Down syndrome by seeing it through the eyes of the families who live it. I’m one of those families; my 2-year-old son, Dexter, has Down syndrome. (There we are, in the collage.) While we all have some things in common, no experience is the same and not everyone shares the same passions or beliefs. My passion is my commitment to cognitive preservation because Dexter, like all children with Down syndrome, is predisposed to early-onset Alzheimer’s disease. Here’s what I want other families to understand.

As I live my life, the pages of my mental scrapbook are filled with really big moments, with scents that take me to specific places in time, and with faces of those who’ve left my life in one way or another. It’s here I can visit my 4-year-old Eloise back when she was 2, or my Nana, who passed just a year ago. I can go to those memories at any time to rewind, re-live, and re-love.

In the early days of my experience with Down syndrome, I was consumed with all the things I thought Dexter couldn’t or wouldn’t do. Now that’s not the case. I think the only time I get anxious or sad is when society pulls out its standardized ruler and judges my son. Like now, as we search for a preschool, the experience is not the same as when we looked for our daughter. Without even meeting my son, people give us gentle letdowns explaining how the school can’t handle Down syndrome. But if they’d only put the person first, we know they’d see a kid who loves to be with others, who is fascinated by books, and who is eager to learn new things.

But when that standardized ruler is away, the family will play. Our kids are a crackup and seeing them together gives us great joy. Though Dexter is not walking yet, he certainly gets around. In fact, he and his big sis have devised a new game called “toss the fruit and get it.” Then they both go off in a mad-dash army crawl to get the faux fruit they’ve flung across the living room. Their giggles are infectious. I’m certain I’ll have the same smile on my face when I recollect this a long time from now.

I am also positive that I’ll keep with me the memories of our Buddy Walk teams and how I cried tears of joy (and release) the first time our team stepped out to the sweet sounds of a New Orleans-style second line band. Surrounded by our amazing friends, both old and new, we’ve made a tradition of parading in style through San Diego’s Balboa Park, waving signs and twirling hankies – this year we even added parasols!

With these grand memories will also be simpler moments, like when Dexter strings words and signs together to say “Mama, I want more hugs.” This one currently melts me.

Even the bitter memories have a place and purpose. Two years later, recalling the time surrounding the birth of Dexter is painful. I was caught off-guard by the words Down syndrome, given a false sense of security by 55,000-in-1 odds against it, and I had a less-than-desirable hospital experience. Though I often feel guilty for feeling great sadness at his birth, I know I can’t change it. But I can use it as a marker to see how much things have improved–something I never thought possible at the time.

To lose this scrapbook of memories, to lose the ability to go back in my mind and pick a page, would be unimaginable. I wouldn’t wish it on anyone and I certainly don’t want it to happen later in life to Dexter. I believe he’ll always want to look back on moments that made an impact on his life. I just can’t let them be taken from him, and it’s why I care so deeply about cognitive research.

So I started an organization with my husband and friends called Down Right Awesome®. We use our forum to share and advocate for cognitive research, and to also promote inclusion for individuals with Down syndrome on our blog, Facebook, and Twitter. If you’d like to learn more about the early onset of Alzheimer’s in individuals with Down syndrome please visit Down Syndrome Research and Treatment Foundation. In addition to Alzheimer’s research, DSRTF is also exploring ways to improve the overall cognitive ability of individuals with Down syndrome. And to help support DSRTF’s research you can donate directly on the site, or by purchasing a Down Right Awesome t-shirt on our site. All proceeds from shirt sales go to support DSRTF research.

By supporting research now, I hope that I can help Dexter in the future. His mind and thoughts hold no less value than yours or mine. They’re his to keep and, as his Mama, they’re mine to protect.

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