Parents won’t let Down syndrome define their children
This article appeared in the Augusta Chronicle
Meet Adyson Wise.
She’s 2 years old, her favorite color is pink and she loves watching Sesame Street. She frequently laughs for no apparent reason, sings Ring Around the Rosie with gusto and vigorously resists her mother’s efforts to brush her hair.
Not far from her home in North Augusta lives 8-year-old Jordan Hall. He’s a second-grader at Aiken Elementary School, plays soccer and baseball, and delights his mother with his willingness to wash dishes after dinner.
In almost all respects, Adyson and Jordan are normal children. That they were both born with Down syndrome makes no difference to their parents.
“He’s our child, and we’re going to love our child no matter what,” said Jordan’s mom, Jenny Hall.
An estimated 250,000 Americans have Down syndrome, a genetic disorder that causes a host of lifelong medical issues, including mild to severe mental retardation.
Among their number was Pat Burley, a 54-year-old woman who was sexually assaulted and slain near her home on Wrightsboro Road two weeks ago. The death struck close to home for the dozens of area people who love or care for someone with Down syndrome.
“They don’t understand hate, cynicism and deceit,” said Dr. David Freeman, a pediatrician at Medical College of Georgia Hospital whose brother has Down syndrome. “They’re just loving human beings, and that’s why it’s so tragic.”
Down syndrome is caused by an extra chromosome in a person’s genetic makeup. Utero tests and sonograms can detect the condition early, but it’s not always known until a baby is born. That was the case with Jordan, who, like many people with Down syndrome, was born with a heart defect.
Jenny and her husband, Timothy, took that issue in stride, but were shocked when they found out two weeks after birth that Jordan had Down syndrome.
“We thought we had a ‘normal’ baby,” Hall said. “We now know there is no such thing as normal for anybody.”
That message is repeated by other parents and local advocates for people with Down syndrome. They don’t define their children by their disorder, but by their personality and interests. For them, Burley’s death is tragic not because of her disability, but because a human being was killed.
“Crime among women occurs every day in this cruel world,” Angel Wise wrote in a note for a reporter before an interview. It’s bad that someone with Down syndrome was killed, “but it is a tragedy to anyone that had to endure such a horrible crime.”
Wise and her husband, Mark, tried for two years to have a baby. They were overjoyed when she finally got pregnant, but their happiness was tempered when a prenatal test showed Adyson likely would have Down syndrome and a hole in her heart.
“I was heartbroken, to be honest,” Wise said. “You have such high hopes for your child.”
The couple quickly came to terms with what they believed God had given them and were delighted to welcome Adyson into the world.
Adyson was such a joy in their life that there was no question they wanted another child. Their next daughter, Sophie, was born a little more than a year later.
Emily Green, a Down syndrome advocate in Aiken County, is worried that the recent homicide will keep parents from giving independence to their adult children with Down syndrome.
There are numerous support groups, jobs and living opportunities for adults with Down syndrome, Green said.
What’s important to remember is that all parents, regardless of their children’s abilities, worry about their children and want to make sure they are cared for, Green said.
In North Augusta, Wise and her husband have a therapist coming regularly to help Adyson reach her full potential. Adyson has reached the same developmental milestones as her younger sister, but at a different pace.
For Green, it’s a reinforcement of her central message.
“There is a misconception that everyone is normal,” she said. “But if you really look at the things that make us people … we all have some disabling condition.”