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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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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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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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.”
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Image via Shutterstock.
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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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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Tuesday, March 12th, 2013
This post comes from writer Jamie Pacton, a professor and writer in Milwaukee. She’s also the mom of two sons, 4-year-old Liam, who has severe autism, and 2-year-old Eliot. She was quite moved by a new book about what it’s like for a father who has Asperger’s syndrome to raise a son who also has the diagnosis, and wants you to know about it, too.
New York Times-bestselling writers John Elder Robison and his younger brother, Augusten Burroughs, had a rough childhood. Their challenges with an abusive father and mentally ill mother are detailed in Burroughs’ famous book Running with Scissors. In Robison’s first memoir, Look Me in the Eye, and its companion book, be different, Robison discussed some of the hardships of his childhood, but his real focus was to explain how having Asperger’s syndrome helped him achieve amazing things (like designing the rocket-launching guitars for the band KISS, to name one example from his very interesting life). In his latest memoir, Raising Cubby: A Father and Son’s Adventures with Asperger’s, Trains, Tractors and High Explosives, Robison turns away from his rock-and-roll past and sheds some light on how having Asperger’s helped him cultivate an outlaw style of parenting.
Raising Cubby is, as Robison told me during an interview, simply the story of “how I went down to the kid store, picked out my kid, Jack (Cubby), and got him to the age of 17, when Cubby was almost thrown into a maximum-security prison for being a Boy Scout-genius with a chemistry set who earned the ire of the local prosecutor.”
This father-and-son story is by turns hilarious, poignant, weird, shocking, and inspiring. It’s full of unlikely parenting adventures: taking a preschooler to power plants, coal mines, and train yards (Cubby piloted his first diesel engine before most kids ride a bike); driving Chairman Mao’s refurbished Mercedes to a car show; inventing an alternate history for Santa Claus; raising a genius who taught himself to read using just the the Harry Potter books, but who later dropped out of high school; and, also fighting an epic legal battle to prove that Cubby was just a harmless geek, not a nefarious criminal.
This book will make you laugh, and make you think about how to parent a child who doesn’t fit into the neat categories we expect our children to occupy.
There are also practical reasons to read and share this book. You’ll learn the recipe for an infallible “monster spray” to soothe toddler night terrors. You’ll put the book down convinced that your kid needs to sign up for off-road Land Rover Driving School before he or she gets their license. And, perhaps most importantly, you’ll learn the secret to getting your kids to call you by the best title ever: “wondrous dada” (or, as I’m teaching my sons, “wondrous mama”).
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Image courtesy of Crown Publishing Group.
Monday, March 11th, 2013
This is a guest post from pediatrician and Parents advisor Harvey Karp, M.D.—whom parents know as the creator of The Happiest Baby on the Block book and DVD. Dr. Karp wanted to weigh in on the controversy surrounding swaddling and share his insights on the topic. As the author of The Happiest Baby Guide to Sleep, he’s passionate about the role proper swaddling can play in getting babies to sleep.
Some baby-care ideas are totally 21st century, like using a CD of special white noise—all night—to boost a baby’s sleep throughout the first year. Some practices, on the other hand, are totally old school, like swaddling.
Baby wrapping is ancient and was super popular until the 1800s when American moms began abandoning it en masse. Some stopped it because they felt it was passé, while other moms bought into the spreading new belief that wrapping deprived new babies of their freedom.
Then, in 2002, parents began to take a new look at this old technique (thanks in no small part to the swaddle advice in my The Happiest Baby DVD/book). This came on the heels of renewed interest in other ancient, but neglected, traditions, like yoga, meditation and breastfeeding. These time-honored health traditions surged in popularity… because they work!
Likewise, swaddling made a huge comeback propelled by the great success parents had with it and the multiple studies finding it effective at reducing crying and boosting baby sleep. Today, swaddling is recommended in most parenting books and the American Academy of Pediatrics’ (AAP) website. Swaddle blankets have even become one of America’s top baby shower gifts.
But, unexpectedly, all of that is being put in jeopardy by a dramatic—and unscientific—new day care regulation being pushed by the National Resource Center for Health and Safety in Child Care and Early Education, in Aurora, Colorado.
In 2011, the group decided swaddling (even in gossamer thin blankets) was unnecessary and risky and should not be used after a couple of weeks or months. They said swaddling might hurt a baby’s hips—but while there has been a connection between improper swaddling and hip dysplasia (with legs wrapped tightly while straight), it’s safe when swaddling allows legs to bend up and out at the hips. The group also said that swaddling might overheat a baby (no study shows overheating from swaddling, unless the head is covered or the room is hot), or might cause SIDS if loose blankets wrap around the baby’s face (studies show that only loose bulky bedding—like comforters—are a SIDS risk, not light muslin ones).
The NRC’s work is usually quite good, but this time they went way out on a limb…without the science to support them. And now, many state governments (including Minnesota, Pennsylvania, and Texas) have taken these unfounded recommendations and turned them into ridiculous – even dangerous – new regulations that literally ban swaddling in day care settings.
While it is true that the AAP warns parents not to put loose or bulky bedding in a baby’s crib, they never said that correct swaddling is unsafe. In fact, a new AAP review praises snug wrapping: “Swaddling, when done correctly, can be an effective technique to help calm infants and promote sleep.” The AAP believes that more studies may even show swaddling to be a useful way to reduce SIDS.
We doctors are very concerned about SIDS. Crib death plummeted 50 percent after we started implementing the Back to Sleep campaign in the mid-1990s, but rates have not dropped in over a decade (2000 deaths/yr). And, even more upsetting, is the fact that infant suffocation is up 400 percent over the past 15 years!
Why so many sleep deaths? Because babies don’t sleep well on the back. (Did you know that babies sleep so much better on the stomach that, before 1992, parents were told never to let the baby sleep… on the back?!) Today, leading SIDS experts recommend correct swaddling to prevent fussy babies from accidentally rolling to the stomach or exhausted parents from using unsafe sleep practices (stomach position or bedsharing) in a desperate bid to get more sleep.
(The wisdom of this advice is supported by a recent study which found that moms who swaddle are about twice as likely to put their baby down in the safer back position.)
And, besides reducing SIDS risk, safe swaddling may also prevent the other serious problems triggered by infant crying and parental exhaustion, like postpartum depression, breastfeeding failure, child abuse, overuse of medication, trouble losing your pregnancy weight; and even the burden on companies from the reduced productivity and increased health care costs of exhausted new parent employees.
Swaddle bans are shortsighted and wrongheaded. They will confuse parents and may well lead to more infant crying… more parent exhaustion… and more serious complications and deaths.
If you are unhappy with the swaddle ban at your daycare, take action! Make a petition asking to return the right to you to decide whether or not your baby can be swaddled, circulate it to other parents in your center, and send it to your state’s governor. (And, please let me know when you do it! Twitter: @drharveykarp).
Check out the proper way to swaddle in this video.
Image: Baby via Shutterstock
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