Posts Tagged ‘ Down syndrome ’

What I Learned from Raising a Child with Down Syndrome

Monday, October 3rd, 2011

October is also National Down Syndrome Awareness Month (in addition to being Breast Cancer Awareness Month).  The CDC estimates that 1 in 691 babies are born with Down syndrome each year, in which a baby is born with an extra chromosome (47 instead of 46), an occurrence that results in mental and physical challenges.

This guest post was written by Amy Julia Becker, a mother who lives in Lawrenceville, NJ with her husband and three children (one boy and two girls).  The oldest of her two daughters, Penny, was born with Down syndrome, and Becker shares her parenting experiences below.  Becker’s most recent book is A Good and Perfect Gift: Faith, Expectations, and a Little Girl Named Penny. She blogs at Thin Places, and you can visit her website at 


When our daughter Penny was diagnosed with Down syndrome two hours after she was born, I immediately worried about her future, her health, our ability to take good care of her, and our community’s willingness to accept her. I thought my world would shrink into a closed room with four walls labeled disability, special needs, developmental delays, and early intervention. But by the time she was one year old, I wanted to introduce her to strangers on the street so that they could share in her infectious smile and ready wave. I’m only five years into parenting a child with Down syndrome, but I’ve learned a few things that have helped me become a better mother to Penny (and to her younger brother and sister, who have developed typically).

Learn to Give and Receive

Before Penny was born, I treated life as if it were an equation. Hard work plus a happy childhood equaled a productive and satisfied adult. Penny helped me to understand that human beings aren’t products on an assembly line. We all have different needs and different abilities. Penny’s needs are more obvious than mine, and her body is more vulnerable. And yet her classification as “disabled” has served to show me my own weaknesses—my impatience, my tendency to judge people based upon surface impressions, my stubborn independence. I remember a time when a young woman with Down syndrome came to our house. She didn’t speak very clearly, and she needed assistance with some simple household tasks. But she sat on the floor with our son, William, who was being fussy, and her gentle, soothing presence brought him great peace. This event is one example of what I have learned–to see life as a web of relationships based upon giving, receiving, and mutual care. Penny has taught me not only to receive her as a gift, but to view every person in my life as a unique being with something to offer.

Stay Focused on One Thing at a Time

Early on, I learned that I couldn’t predict when Penny would reach developmental milestones. The half-dozen baby books on my shelf wouldn’t help me if I wondered when she “should” roll over or clap or eat with a spoon. For a while I thought I needed to let go of goals for her altogether because I didn’t want to equate her value as a human being with her ability to walk or talk. But eventually I realized that Penny would learn and grow, even if she did so at her own pace. My husband and I started to focus on helping Penny learn the next thing, whatever that might be. Now that she’s in kindergarten, we ask: What’s the next thing she needs to learn about reading? About numbers? About friendship?  It’s easy for all parents to spend too much time worrying about the distant future; trying to focus on one thing at a time has provided me emotional freedom.

Concentrate on Character Instead of Comparisons

When Penny was a baby, I often found myself analyzing other children her age and wondering how she measured up. If I discovered that she could do something another kid couldn’t, I felt self-satisfied and superior. On the other hand, when other kids her age could run across the room and Penny still hadn’t begun to crawl, I felt panic rattling inside my chest. I finally realized that whenever I met another child, I asked, “What can she do?” and the comparison would push me away from that child and parent. If I changed my question to “Who is she?” it allowed me to focus upon the child’s character. Every child became valuable and interesting once I stopped comparing them.

Now, with a happy, healthy child who has just started kindergarten, I wonder sometimes why I felt so scared. Having a child with Down syndrome has expanded my world, and my heart.

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Do You Have a Great Story?

Tuesday, September 20th, 2011

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.

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Daily News Roundup

Tuesday, March 8th, 2011

Children Make Parents Happy … Eventually
Parents: The late-night feedings, midnight diaper changes and temper-tantruming toddlers might be worth it after all. A new study finds that while having more children makes young couples unhappy, bigger families bring parents joy in midlife and beyond. (Yahoo)

Noninvasive Test May Identify Down Syndrome  Early On
A simple blood test may one day offer a safe way to detect Down syndrome during pregnancy, researchers say. In a small study, an experimental blood test identified a gene mutation associated with Down syndrome with 100 percent accuracy, according to the Cyprus scientists. (Yahoo)

Bipartisan Group Backs Common School Curriculum
A bipartisan group of educators and business and labor leaders announced on Monday their support for a common curriculum that states could adopt for public schools across the nation.  The proposal, if it gains traction, would go beyond the common academic standards in English and mathematics that about 40 states adopted last year, by providing specific guidelines for schools and teachers about what should be taught in each grade. (New York Times)

Video Games That Make Kids Move Burn Calories
Interactive video games that require high-energy movement raised middle school kids’ metabolisms to levels typically seen with moderate or vigorous exercise, a new study finds. Researchers evaluated the effect of six forms of so-called “exergaming” on energy expenditure in 39 children of various body-mass indexes (BMIs) at a youth fitness research and training center at the University of Massachusetts. (Yahoo)

Japan halts vaccines after deaths of 4 children
Japan has temporarily stopped using vaccines from U.S. drugmaker Pfizer Inc. and Sanofi-Aventis SA of France while it investigates the deaths of four children who were inoculated, the health ministry said Monday. (MSNBC)

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Daily News Roundup

Monday, March 7th, 2011

Simple blood test can reveal Down syndrome in pregnancy

The journal, Nature Medicine, published the latest of several recent studies that suggest scientists can spot Down syndrome through fetal DNA that has been shed into the mother’s bloodstream. Currently, pregnant women get blood tests and ultrasound to find out if the fetus is at risk for Down syndrome. For a firm diagnosis, doctors take a sample of amniotic fluid or the placenta. Those sampling procedures involve a small risk of miscarriage. A reliable diagnostic blood test also could give an answer earlier than the standard tests. (MSNBC)

Fewer Children Suffering From Ear Infections

In the past 15 years, visits to the pediatrician have declined nearly 30 percent for ear infections. Harvard researchers said because fewer adults are smoking, that’s less irritation to the child’s airways, and doctors are also using a vaccine against bacteria that cause ear infections. Breast-feeding is also an added protection. (Fox News)

Joy of parenting?  Moms, dads may be kidding themselves
As children’s economic value has plummeted, their perceived emotional value has skyrocketed, becoming, “the economically worthless but emotionally priceless child,” as Princeton sociologist Viviana Zelizer wrote in her book, “Pricing the Priceless Child” (Princeton University Press, 1994). If they are, many parents are in the dark about it. In a Pew Research Report, published in May of 2010, 87 percent of mothers giving birth in 2008 stated “the joy of having children” as the reason they decided to have their first (or only) children. (MSNBC)

Pregnant women: Secondhand smoke can harm your baby
Researchers from the Journal of Pediatrics found exposure to secondhand smoke increased a non-smoking pregnant woman’s changes of having a stillborn by 23 percent, and increased the risk of delivering a baby with birth defects by 13 percent. (CNN)

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Daily News Roundup

Thursday, January 13th, 2011

Goody Blog Daily News RoundupProposed school-lunch rules trade fries for veggies
The new standards from the Agriculture Department requires schools to cut sodium in meals by more than half, use only whole grains and serve low fat milk. It also would limit kids to only one cup of starchy vegetables a week, so schools couldn’t offer french fries every day.  If approved today this would be the first major overhaul of school lunches in fifteen years.

Facebook, AMBER Alert join forces to find missing children
Six weeks ago, Col. W. Steven Flaherty, Virginia State Police Superintendent’s daughter was abducted by his ex wife’s boyfriend.  Police issued an AMBER Alert in Virginia and posted the alert on the Virginia State Police Facebook fan page. 4,000 Virginia State Police Facebook fans were able to view pictures of the suspected car, the abductor, and the missing child. Five days later, on the other side of the country, a woman spotted the missing pair outside a store in San Francisco.  A total of 53 new AMBER alert pages have been created, one for each state, Puerto Rico, U.S. Virgin Islands and the District of Columbia.

Down Syndrome: Simple Blood Test around the Bend

A new screening technique may have the potential to reduce the number of invasive tests by about 98 percent. According to BBC, the new technique involves a blood test for the mother and an ultrasound for the baby.  By combining these results doctors can estimate the chance that the baby may or may not have Down Syndrome.

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Daily News Roundup

Wednesday, October 13th, 2010

Goody Blog Daily News Roundup3 ways to lower breast cancer risk, despite your DNA: Women who make healthy lifestyle choices lower their risk of developing invasive breast cancer, regardless of whether they have a family history of the disease, according to a new study. [MSNBC]

Adoptions from Ethiopia rise, bucking global trend: As the overall number of international adoptions by Americans plummets, one country — Ethiopia — is emphatically bucking the trend, sending record numbers of children to the U.S. while winning praise for improving orphans’ prospects at home. [MSNBC]

For gay youths, middle school can be toughest time: Coming out at impressionable age makes students a target for bullies. [MSNBC]

Women with epilepsy may have a harder time conceiving: A study in the journal Neurology finds women with epilepsy may have a harder time conceiving than women without the disorder.  Epilepsy results from the generation of electrical signals inside the brain, causing recurring seizures. [Paging Dr. Gupta/CNN]

The evolution of love: 5 ways to keep your marriage alive: We live in a world where the word divorce is rampant. However, for the fifty percent who don’t make it, there is another half who has kept their marriage alive. iMag interviewed couples that are at different stages of their married life, from one to 39 years, to see what the secrets are to staying together happily. [Fox News]

Siblings of autistic children may also have subtle traits: As many as one in five siblings of children with autism may have subtler problems with language and speech, according to new research involving nearly 3,000 children. [Business Week]

Down Syndrome births are down in U.S.: More than 90 percent of women carrying a child with Down Syndrome choose to end their pregnancies, but parents raising these kids say they’re a “gift.” (This article is a bit older, but I thought it was still very striking.) [ABC News]

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Testing for Down Syndrome: A Parent’s First Test

Wednesday, September 15th, 2010

Amy Julia's Becker's family, including Penny, who has Down syndromeIn a beautiful guest post on the NY Times Motherlode blog, author Amy Julia Becker writes about the decision not to test her baby in-utero for Down syndrome. It’s a tough decision for any parent, or at least it should be, but for Becker and her husband the decision has particular resonance: their first child, Penny, was born with the disease, which, as she writes, means “my chances of having another baby with Down syndrome increased significantly, from 1 in 1,000 to 1 in 100.”

When Becker was pregnant with her second child, she had the test to see if he has Down syndrome; it was negative, and indeed, her son was born without the disease. Now that she is pregnant with #3, she is deciding not to have the test:

Peter and I know the statistics. We know the health complications associated with Down syndrome — heart defects, intestinal abnormalities, celiac disease, low muscle tone, developmental delays. We know that Down syndrome brings with it more intensive one-on-one attention in the early years and more doctor’s visits throughout childhood. We know it brings with it more uncertainty as the child grows up.

But we also know that a textbook definition of a syndrome can never capture the reality of any particular human life. Penny, for instance, was one of the 50 percent of children with Down syndrome born with a heart defect. When she was 14 months old, she went into the hospital one morning to have her heart repaired. She came home that evening. Otherwise, she has experienced fairly normal health. Tubes in her ears, glasses and one hospital stay during a bout of the stomach flu. The list of potential problems that we received after she was born could never have predicted the pride we felt when Penny learned to write her name, when she, after months of practice, jumped off the ground with two feet, when she finally progressed to big-girl underwear. (more…)

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I Dare You Not To Cry

Monday, September 13th, 2010

…when you read this story in our October issue by Kelle Hampton, who shares the remarkable details of the birth of her second daughter, Nella.

Nella has Down syndrome, and Kelle didn’t know it until she gave birth. Reading her story–originally posted on Kelle’s mega-successful blog–touched me very deeply.  One of my uncles has Down syndrome, as I’ve mentioned before, and I’ve spent my whole life watching my grandparents raise their fourth son. He’s now 45 and my grandparents, in their mid-80s, are still raising him, still trying to help him be as independent and prepared for the future as they can.

Both times I was pregnant, I thought a lot about what would happen if I learned that my child had Down syndrome. I grew up hearing my grandparents say over and over again that having Chris is the best thing that ever happened to them. They believe that he enriches their lives in ways that they could never have imagined. They’re right; Chris is an exceptional human being. Still, I suspect that if I found myself in Kelle’s shoes, my reaction would be a lot like hers was.

I’ve never asked my grandmother what went through her mind right after Chris was born, but I’m going to find out. I’ve been waiting to show her Kelle’s story until it was in print (she’s more of a magazine reader than a blog reader, though she does go online, bless ‘er). I wonder if she’ll be able to relate to–or admit to–the raw pain that Kelle describes. I am positive, though, that she identifies with where Kelle is now, which is utterly grateful for the path she’s been put on, thanks to the birth of her incredible child.

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