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.
Writer Judith Lederman shared her story of being pregnant at 53—and just this weekend, gave birth to her twin sons. According to her doctor, high-risk OB/GYN Alvin Schoenberger in Novi, MI, attempting pregnancy after the age of 45 is not for the faint of heart. “There are some risks that are increased just because of your age, and have nothing to do with pregnancy, such as heart disease,” he says. “But advanced maternal age also puts you at increased risk for type 2 diabetes, preeclampsia, miscarriage, stillbirth, placenta previa, and increased risk of having kids with congenital anomalies.”
These increased rates of complications are significant— children born to mothers over 45 have a one in 40 chance (or even greater) of having Down Syndrome. In his practice, it’s rare for patients over 45 to attempt pregnancy. ”In the early 40s, some of these risks are increasing. But pregnancy in your late 40s a little more uncharted waters, and over age 50 I’ve only had one patient. It’s simply not that common.”
Before you consider an over-45 pregnancy, you need to consider what risks you and your child will face, and what you would do if, for instance, some of the prenatal testing indicated Down Syndrome or another chromosomal abnormality. You may also need to consult with a fertility specialist, as achieving pregnancy after 45 without intervention is uncommon. “It’s a rare, rare, rare mother who is 50 years old who hasn’t had some form of fertility treatment,” says Dr. Schoenberger.
If you are considering pregnancy over 45, Dr. Schoenberger advises you to get fit—and get informed—pronto. “Stay in good shape, ideally be at ideal body weight, and exercise,” he says. “You also should know all the statistics of what you’re getting into, especially the increased risk for chromosomal problems. And make sure you think about the other end of things. You need to consider what happens when your child is 15 and you’re not in good health or not even around.” That’s especially important if your child does have Down Syndrome or another issue that may make it difficult for him to live a fully independent life as an adult.
But as long as you’re in good health—and you’re prepared for any potential worst-case scenarios—pregnancy over 45 (or even 50) can be a possibility.
Even Moderate Drinking in Pregnancy Can Affect a Child’s IQ
Relatively small levels of exposure to alcohol while in the womb can influence a child’s IQ, according to a new study. (via ScienceDaily)
Pediatricians May Lack Training in Concussion Care
Pediatricians and pediatric nurses often see young patients with concussions, but a new survey suggests they may lack the tools and training to diagnose and treat them. (via Reuters)
Pollutants Linked to Lower Fertility in Both Men and Women
Researchers say that pollutants such as perchlorinated biphenyls (PCBs), industrial compounds and pesticides that are no longer manufactured but remain in older products can still decrease couples’ ability to have children by up to 29%. (via Time)
Kids With Down Syndrome Twice as Likely to be Heavy
More than one in four children with Down syndrome in the Netherlands is overweight, a rate double that of Dutch youth without the developmental disability, according to a new study. (via Reuters)
Enrollment in Charter Schools is Increasing
Although charter schools engender fierce debate, the number of students enrolled increased close to 13% between 2010-11 and 2011-12. (via New York Times)
Early Puberty May Heighten Heart Risks For Women
A new study finds menstruating before age 12 may contribute to a 23% greater risk of developing heart disease. (via Time)
You can also get involved in the annual National Buddy Walk Program, which seeks to raise awareness and funds for Down syndrome research by hosting walking events throughout the country. Watch a public service announcement for the National Buddy Walk Program below, which features TV hosts Nancy O’Dell (also a Parents magazine columnist) and Meredith Vieira, along with actors John C. McGinley (“Scrubs”) and Chris Burke (“Life Goes On”).
Look for more Parents.com/NDSS.org resources later this month or head over to Ellen Seidman’s blog, To the Max, which is chronicling stories to celebrate Down Syndrome Awareness. If you have a story to share, you can also participate in the My Great Story campaign, which encourages families to share their stories on NDSS.org.
New Study Aims to Prevent Agricultural Deaths in Children
Teens are four times more likely to die on a farm than any other workplace. A new study seeks to prevent tractor related deaths in children. (via ABC News)
Children Protected from App Developers Collecting Information
App developers are hesitant to collect information from children’s apps because of the Children’s Online Privacy Protection Act. (via Washington Post)
Smoking During Pregnancy Increases Child’s Chance of Obesity
Mothers who smoke during pregnancy predispose their infants to choose fatty foods, researchers reported. (via LA Times)
Breast Milk Banks See Increase in Demand
A breast milk bank director says demand for breast milk is up as more hospitals are using donated breast milk for pre-term infants. (via USA Today)
Teen With Down Syndrome Banned from Flight
A 16-year-old boy with Down syndrome was deemed a flight risk by American Airlines and forced to switch to another flight. (via New York Daily News)
Today’s special date was chosen as World Down Syndrome Day for its symbolism — the numbers 3 and 21 represent ”the third copy of chromosome 21 present in Trisomy 21, the most common form of Down syndrome.” According to the National Down Syndrome Society (NDSS.org), “this additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.” The NDSS Down Syndrome Fact Sheet also reveals that 1 in every 691 babies in the U.S. is born with Down syndrome, and there are more than 400,000 people living with Down syndrome in our country.
Join in increasing Down syndrome awareness today and every day. You can read 21 Facts About Down Syndrome, click on the jump below to read a Preferred Language Guide, and tweet on Twitter using the #321 hashtag.
Teen Girl Dies After Inhaling Helium at Party
Ashley, 14, died last weekend after inhaling helium from a pressurized tank during a party in Medford, Ore. Her parents hope their daughter’s death will teach others about the dangers of helium.
Eating Disorders on the Rise in Teen Boys
NBC’s chief medical editor Dr. Nancy Snyderman warns parents about the rising number of teenage boys affected by eating disorders, and explains why their symptoms often go unnoticed.
More U.S. Kids Living in High-Poverty Areas: Study
Years of economic setbacks have taken their toll on the nation’s youngest residents, with another 1.6 million children living in high-poverty neighborhoods, according to one study that shows nearly 8 million children residing in poor areas in 2010.
Blood Test Detects Down Syndrome During Pregnancy
A second company reports that it has developed a prenatal blood test to detect Down syndrome, potentially providing yet another option for pregnant women who want to know whether their unborn child has the condition.