Moms celebrate Down babies’ accomplishments
02/04/2013 12:51 AM
02/04/2013 2:18 AM
With 19 babies younger than 2 crowded into the living room, kitchen and dining room of Fatina Clark’s West Columbia home, the noise reverberates off the walls.
It isn’t the sound of children, however. They contribute only an occasional squeal of excitement. It’s the moms making the commotion, talking one-on-one or in small groups.
Like many large play groups for infants, this is really a mom support group. And more than most such groups, these moms need to share their experiences with each other.
Each of the children in the group has Down syndrome.
“In down moments, this gives us more opportunities to have others to cheer us on,” said Padgett Mozingo, whose 21-month-old Lila is the oldest of the babies.
She said it as a lower-case down; but the upper-case Down would have fit as well. They all deal with the challenges of having special needs children, and most hardly had considered those challenges two years ago.
“Now we have a different perspective,” said Whitney Brown, holding her 17-month-old daughter Riley. “We use this (play group) as a sounding board – try this, do that – and to cheer each other on.
“I’m just as excited for Julianne (Peterson) when she crawls as I am for Riley.”
The moms ooh and aah over each other’s children – from their Saturday-go-to-play-group clothes to their physical accomplishments such as sitting up and crawling.
“These people understand what it means for Lila to walk,” Mozingo said.
Down syndrome is a genetic condition in which a child is born with 47 chromosomes instead of 46. (British physician John Langdon Down first described the condition in 1866.) About one of every 700 babies in the U.S. is born with Down syndrome, according to federal statistics. Based on those statistics, the majority of Down syndrome babies in Richland and Lexington counties, which average around 8,000 births a year, are in this play group.
Down syndrome newborns often have serious heart and intestinal problems. Their muscular systems develop more slowly than most other children, and many have some measure of intellectual disability. But unlike a half century ago when children with Down syndrome were aimed to a life of institutional care, medical professionals now strive for early intervention to help Down syndrome children reach their potential.
The moms at the play group spend equal time comparing notes on physicians, physical therapists, speech therapists and insurance plans. Most of the moms had never been around a Down syndrome child before they had one. Now they craved interacting with others facing the same challenges.
Prenatal tests didn’t reveal Riley Brown had Down syndrome. Shortly after being told of the diagnosis after the birth, “I shut down,” Whitney Brown said. “I thought, ‘This is not real.’ You worry about the craziest things. I remember worrying that my child would never have a best friend.”
The play group has helped her realize how many other parents had similar, often unfounded, fears. (Many Down syndrome children, for instance, are so outgoing they feel like everyone is their best friend.)
“I thought when you had a Down syndrome child you didn’t take them out in public. How stupid was that?” said Kayla Garrett, who brought her daughter, 11-month-old Maddie Grace, to the play group. “These are all kids. They do all the things kids do. All of these children break the stereotype.”
The group first met nearly a year ago, forming relationships at physical therapy sessions or getting in touch through Family Connections of South Carolina, which provides support for families of children with special needs. Some met during last year’s Buddy Walk, a fundraising event for the National Down Syndrome Society. Now they all share photos and insights through social media.
At the first play group, “I remember thinking, gosh, can you believe that there are eight little girls (with Down syndrome) all in this area under 2?” Brown recalled.
The all-girl gathering soon expanded, adding a few boys and more girls. The 19 who showed up for the January meeting at Clark’s home were the most ever. They arrived from as far away as Saluda and St. Matthews.
Clark looked out at the swarm in her living room and said: “Having a child with special needs is the new normal.”
Many of the moms don’t like the term “support group.” “That sounds so depressing,” said Stephanie Peterson.
At this age, however, “play group” hardly describes the action. The few children who are mobile – Lila was the only one doing much walking – spend most of their time crawling after toys, cups or anything colorful. They check out the other children, but actual interplay will come later.
The mom’s look forward to those moments. They plan to keep meeting eight to 10 times a year as the children grow up.
“It’s nice just interacting and learning from the other moms,” said Catherine Tucker, after her first play group session with her 1-year-old daughter, Sara Hook. “It was fun. It’s nice to watch them all growing together.”
Down syndrome play group
If you have a Down syndrome child younger than 2 and would like to join the play group, email Fatina Clark at firstname.lastname@example.org.
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