October 2009

Caroline & Friends: Sharing the Up side of Down

Author: Linda S. Hopkins

After a full day of kindergarten (and two hours of therapy) Caroline Mayers runs in the door with energy to spare. Curious about the stranger sitting on the living room sofa, she approaches. Introducing myself, I extend a hand; she gives it a quick shake and goes on about the more important business of play. Later she returns to sing the “Alphabet Song,” count to 10 and demonstrate her curtsy and arabesque. She identifies pictures of animals, including an elephant and a penguin—all pretty typical five-year-old behavior.

Meanwhile, three-year-old sister, Honora, races through the living room on her plastic riding toy; big sister, Emma (age eight) sits primly, conversing with the adults and showing off her grownup manners. Tables dotted with children’s videos, shelves dressed with family photos, walls adorned with “original” art, backyard equipped with swing set—nothing too unusual here.

“To the outside world, what makes us different is our middle daughter, Caroline, who has Down syndrome. To us, and those who know her, it is just a physical characteristic. It makes her no different than her older sister’s brown eyes make her different from her baby sister’s blue eyes,” says Kathleen Mayers on her Web site, carolinenfriends.com.

While Kathleen doesn’t deny that Down syndrome presents special challenges, she views them as a normal part of parenting. “We have good days and bad, but very few of either have anything to do with Down syndrome. We have struggles with all of our children,” she explained. “Every child is different and we do all we can to meet their individual needs.”

In Caroline’s case, persistence and vigilance have paid off as she is 100 percent mainstreamed into kindergarten this year. Fitting in well both academically and socially, her biggest obstacles are getting on the school bus and carrying her backpack because of her small stature. “We have not really encountered anything that she can’t do,” said Kathleen. “She rides a bicycle, takes ballet and swimming lessons, talks on the phone…”

According to Kathleen, early intervention was a key component in Caroline’s ability to surmount certain obstacles that might have hindered her ability to function so normally. Utilizing special programs and services at both the Medical University of South Carolina in Charleston (MUSC) and Hope Haven in Jacksonville, FL, she has found solutions to many problems. For example, at 16 months old, when Caroline was struggling to walk, within five minutes, her physical therapists at Hope Haven had her taking her first independent steps using “Hip Helpers.” (See hiphelpers.com for more information.)

Since individuals with Down syndrome often have issues with hearing and sight, Caroline sees several specialists at MUSC who have offered remedies so that the developmental effects are minimized. She participates in physical, occupational and speech therapy locally, maximizing her chance to succeed.

“I think people set the bar way too low for people with Down syndrome,” said Kathleen. “You can’t look at Caroline and judge her because of her appearance or her size. It tells you nothing about what she’s capable of.”

Eyes opened to those capabilities, Kathleen has made it her mission to help educate the public, spreading the message that Down syndrome is manageable and can even be a blessing. “It sounds crazy to say, but Caroline’s Down syndrome is the best thing that ever happened to me,” she said. “I wouldn’t change anything about her condition for me. I might change it for her, to make her life easier, but I wouldn’t change it for me. It has made me a better wife, a better mother to all of my children and a better person. It’s slowed me down and given me a clearer perspective of what’s important.”

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About Down Syndrome
Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. According to the National Down Syndrome Society (NDSS), one in every 733 babies born in the U.S. has the condition. A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. However, every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all. People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives. For more information, visit ndss.org.

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Small Steps, Giant Strides: Join the Buddy Walk for Down Syndrome
On October 31, Caroline & Friends will host its fourth annual Buddy Walk®. The Buddy Walk was established in 1995 by the National Down Syndrome Society with three primary goals: to promote acceptance and inclusion of people with Down syndrome; to raise funds locally and nationally for education, research and advocacy programs; and to enhance the position of the Down syndrome community— to positively influence local and national policy and practice.

The local event takes place from 3 to 5 p.m. in the rear parking lot of The Mall at Shelter Cove. It is a leisurely walk (less than a mile from start to finish) that incorporates plenty of food and family fun plus trick-or-treating and a costume contest.

“The idea is to make the walk. As you do, the kids can trick-or-treat and you can stop and read uplifting, factual stories about what people with Down syndrome are accomplishing,” said Kathleen. “The success stories that line the walk remind people how rich a life can be. The funds we raise allow us to improve the lives of those same individuals and countless others.”

Caroline & Friends is seeking walkers, sponsors and volunteers for the event. Donations are encouraged and will be accepted on site. However, if you would like to contribute in advance, please mail checks to Caroline & Friends, 13 Cartgate Dr., Hilton Head Island, SC 29928. Seven percent of the proceeds benefit the National Down Syndrome Society with 93 percent put to work locally. In addition to maintaining its uplifting and informative Web site, Caroline & Friends provides funding for parents to take their children to specialized clinics and to support the additional training of local educators and therapists. The organization is currently producing a brochure to help counteract negative attitudes and eradicate stereotypes resulting from misinformation. The brochure will be distributed in area OB and pediatric offices.

Caroline & Friends is a 501 C 3 charitable organization. For more information,
call (843) 298-8364 or visit carolinenfriends.org.

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