Editor's note: This story originally published in the October 2010 issue of SouthPark Magazine. Like any two brothers, Will and Andrew Thomas are each other’s best friends and worst enemies. They love to play together and they love to push each other’s buttons. They share a love of Harry Potter, “Star Wars” and basketball. But the two brothers, about 18 months apart, also have their differences. Andrew likes chocolate ice cream, while Will likes vanilla. And Will was born with Down syndrome, while Andrew was not. Will, 8, is Bill and Amy Thomas’ first child. Having one child with Down syndrome doesn’t necessarily mean that a future child will also have the genetic disorder. The two parents decided early on that a sibling could be a positive influence on Will. “Will teaches Andrew a lot of tolerance and acceptance,” says Bill, 41. “And Andrew certainly helps push Will along with everything that he doesin games and sports to communication and reading.” Andrew, who turned 7 in September, understands on a certain level what Down syndrome is and that sometimes his brother is going to require a little extra attention. The disorder has varying symptoms, including delayed physical, mental and social development. The two parents never want their younger son to feel like he has to be a caretaker, and so they make sure to give him space to be his own 7-year-old self. “You’re just like any other mom, (dealing) with sibling rivalry and issues,” says Amy Thomas, 39. On Oct. 9, 2010, Will and Andrew and their parents participated in their eighth Buddy Walk, an annual fundraiser for the Down Syndrome Association of Charlotte. The afternoon festival of fun, food, and music brings together people from across the community to Freedom Park to raise money and awareness for the association.
A life with purpose
The Thomases, who live in the Cotswold area, got involved with the Down syndrome association almost immediately after Will was born, seeking support and advice for the unknown, and unexpected, territory that lay ahead of them. The news that Will had Down syndrome had blindsided the two parents. Amy had had a fairly normal pregnancy with Will, just as she would again a few years later with Andrew. But as soon as Will was born, it was clear that something wasn’t right. “I think Amy was exhausted and oblivious,” her husband says. “I kind of noticed there was conversation going on and they came back and delivered the news pretty much right away: ‘We suspect your child has Down syndrome.’” The happy welcome the couple had envisioned for their son was clouded by worries for his future. There was concern and fear of the unknown. But for Bill Thomas, there was also something greater. “I’ve been very fortunate in my life,” he says. “I’ve never broken a bone, I’ve never had braces.As strange as this might seem, I had a lot of things I was doing and not a whole lot that drove me. And having a child with special needs, for whatever reason, felt like, to me, purpose-driven.” The new dad dived into the parent handbook provided through the hospital by the Down syndrome association, wanting to understand as much as he could about the genetic disorder and how he could help his son. About a year after Will’s birth, Thomas, who works for Bank of America, joined the board of the local association as treasurer. During his seven years on the board, he also served as president and vice president and now serves on the board for Camp Horizon, the association’s overnight summer camp for older children. His wife continues to help out with the organizations’ events and activities. “I hope I’ve helped some other people,” Bill Thomas says. “Selfishly, I’ve helped myself and my family. I think the association has done a lot of good overall.”
The local association’s services extend far beyond the handbook for new parents. The association offers ongoing support through demographic-based subgroups, educational symposiums, and numerous social activities for both kids and parents. This summer, Will attended two sessions of Camp Holiday, the association’s day camp, and loved every minute of it. “The first day of camp, we were all coming down to eat breakfast and he disappears and he sits down with his Camp Holiday backpack on at the breakfast table,” his father says. “He’s ready to go. He’s fired up and can’t wait to get to camp.” Will brings that kind of energy to everything he does, whether it’s shouting the “Go Bucks!” rally cry of his father’s alma mater Ohio State University, dancing along to his favorite song from “The Wiggles,” or getting the crowd on its feet at his piano recital. But like any other kid, Will can also have his tantrums and moments of stubbornness. His parents want to dispel the stereotype that all kids with Down syndrome are simply happy all the time. “I think people forget that they’re people too and they have real emotions,” Bill Thomas says. “And it hurts when people don’t want to play with them.” Misconceptions like that can make raising a child with Down syndrome even more challenging. The couple’s next-door neighbor’s daughter started kindergarten the same day as Will, and the neighbor was surprised that the two kids would be going to the same school. Amy Thomas handled the conversation with a statement she’d heard at a convention: “Special education is not a place, it is a service.” Her husband tenses up when asked if kids in Will’s second grade class at Cotswold Elementary School ever tease or exclude his son. The bullies haven’t really come yet, but he still worries all the time about his son making friends. “Kids can be tough and cruel,” he says. “You start to see it a little bit morewhere kids are kind of giving him some funny looks and starting to question whether they want to play with Will or not. And that breaks your heart as a parent.” Will had to have heart surgery when he was 2, but has not had any heart problems since. His biggest problem is speech and communication. Often his family can translate what he is trying to say, but sometimes, even they have a hard time following him. “They say loneliness is the greatest disability,” his mom says. “It’s hard to have friends if you can’t communicate. It’s frustrating.” But with help from Andrew and friends at school, along with speech and occupational therapy, the family has seen a lot of progress in Will’s ability to communicate. “For Will and other kids with Down syndrome, they absolutely can learn,” Bill Thomas says. “They absolutely do learn. But lots of times, it takes more repetition, more practice, or a longer time to get concepts.” When people have low expectations of Will, he tends to behave according to their expectations. But the reverse is also true and positive expectations can go a long way. The challenge is getting other people to see Will the same way that his family does. The parents understand the misconceptions some people have. Neither of them had a personal relationship with someone with Down syndrome before they had Will. But they want what any parent wants for a child: a life of acceptance and happiness. “We try our best as parents to help others understand and not be afraid to walk up to somebody,” Bill Thomas says, “and understand that they’re people too and want to be included and part of society.”
More information: www.dsacnc.org.