‘Explosion of acceptance’ proves a benefit to all

By Sarah Colson

When Kathy Torgerson gave birth to her second child, Joanna, 32 years ago, instead of flowers or balloons as a sign of congratulations, she received sympathy cards. Although she had a healthy, beautiful little girl, some did not consider having a child born with Down syndrome (DS) to be an occasion worth celebrating. Fortunately, Torgerson said, much has changed for the better in the intervening decades.

“I don’t think people are getting those sympathy cards anymore,” Torgerson said. “It’s just celebration and just another baby who just happens to have an extra chromosome. There’s a lot of extra good stuff that comes along with that.”

Nowadays, Torgerson said children with DS have a place to turn to, both outside of the school systems and within. Kathy said that is a result of an “explosion of acceptance and happiness.”

As evidence of that explosion of happiness and acceptance, last Saturday at ETSU, hundreds gathered for the 15th annual Buddy Walk, an event to promote the awareness and inclusion of people with DS. The Torgerson family has been coming to the walk every year for the past 15 years and Joanna has earned quite a fan base.

“We don’t even remember how we knew how she could sing the national anthem,” Torgerson said, “but they started asking her to sing it at the Buddy Walk and she has sung it numerous times at the Special Olympics.”

Joanna has also sung for a conference in Knoxville, a Johnson City Cardinals game, and perhaps most important, at her granddaddy’s funeral.

“I’ve got to stress that she’s shy,” Kathy said, “so the fact that she will sing that for the Buddy Walk is because it means something to her. She does it very beautifully. I’m very proud of that. I think that’s a great gift she shares with lots of other people.”

This year Joanna and her family missed the Buddy Walk, but for good reason.

“I’m going to Nashville for a concert to see Lady Antebellum and Hunter Hayes,” Joanna told News and Neighbor, “and I get to meet them.”

While participants didn’t get to hear Joanna sing this year, one of her best buddies, Darryl Collins, said it’s well worth marking on one’s calendar for next year. The walk typically raises about $40,000 and is the only fundraiser FRIENDS (Friends Reaching, Inspiring & Educating Neighbors about Down Syndrome) does annually.

“It’s worth coming out to know your neighbors,” he said, “to see what’s going on in their lives and just demystify some of these folks.”

When Joanna was born, Kathy and her husband David learned all about how some of their neighbors misunderstood what it meant to live with DS. They also had to learn how to raise their daughter to be independent and courageous in a world that at best ignored the DS community and at worse, ostracized it.

At that time, the phrase “early childhood intervention” was just beginning to make its way into mainstream discussions about developmental issues. Finding nothing in the libraries, Kathy called ETSU’s early childhood development department and asked for Linda Keller, who worked in the department at the time. The youngest children Keller had worked with were three months old. Joanna was just three weeks old.

“So at three weeks old she was at school at ETSU with Linda and with some wonderful therapists,” Kathy said.

Joanna was also one of the youngest babies to have successful open heart surgery to repair a hole in her heart at Vanderbilt. The doctors originally wanted to wait until she was at least six months old, but when three months came around and they found Joanna was failing to thrive, they had no choice.

“It just seemed like we were in the right place at the right time,” Kathy said about the successful surgery, which some might see as an ordeal, but which she counts as a blessing. “This was such good news to share so we started support groups just to try to reach out. Ever since then it’s been a mission for me.”

When Joanna was in her early teens, a beautiful friendship began not just for Kathy and David, but also for Joanna. Darryl Collins, who had just moved his family to town from Florida, called Central Church of Christ in Johnson City where Kathy worked as the secretary to ask about the church services.

“I could tell they were just the kind of people who jumped right in and volunteered to do things,” Kathy said of the Collinses. Sure enough, the Collins family joined the church and soon after that organized a talent show and joined FRIENDS.

Today, the Torgersons, especially Joanna, count the Collins family as their dearest friends from FRIENDS. Darryl played a large role in organizing, “Snack & Yak,” a group designed for young adults who have DS and may need other outlets past high school activities.

Darryl said one of his main motivations to have a friend like Joanna is rooted in the ignorance toward developmentally challenged individuals he witnessed growing up. As a teenager, a colleague of his suffered from cerebral palsy. He noticed some of his peers “going out of their way to not eat with her” in the break room.

“I’ve witnessed that cruelness and ugliness all my life towards individuals with special needs,” Darryl said, “but up until that point I saw it from kids. But then I actually heard it from adults and that really, really confused me that they just weren’t smarter than that.”

Darryl’s wife, Regina, has similar passions towards inclusion of others. She was Joanna’s social worker when Joanna spent three and a half “life-changing” years at a transitional home for young ladies with DS during her mid-20s. That home has since shut down. Still, it was a time when Joanna and her parents, with the encouragement of Regina, realized Joanna’s full potential as a highly-functioning adult.

“We were ‘besties,’” Regina said. “When I worked with the girls, we were going to go everywhere, we were going to do everything; we were going to try different things, from Dollywood to walking to the mall to ‘let’s go ask for jobs.’ We asked everywhere. The girls were all for it.”

Since then, Joanna has moved back home but certainly stays busy. She volunteers at the Gray Fossil Site and at her church a few days a week. She’s done a variety of jobs from selling Thirty-One products and gift baskets to managing the Daniel Boone girls’ basketball team. Her favorite things to do include artwork, singing and going to concerts and musicals, like the one she went to last weekend.

Darryl said the community should no longer be surprised to see special needs individuals out in the public doing volunteer work and working regular jobs just like anybody else.

“In her own way, Joanna wants to be engaged in interaction,” he said. “She does not want to be segregated off from the rest of the population.”

The disappearance of stereotypes and stigmas about individuals with DS is what Kathy has been hoping for the last 32 years. And that, according to Kathy and the Collinses, is exactly what’s happening in the Johnson City community and beyond.

“In the beginning, we were doing very grassroots stuff,” Kathy said. “And now all these years later, I can pick up a Target ad and there’s a beautiful little boy or girl with Downs modeling. It’s like when Jesus promises that he will give you more than you can ever ask for or image — that’s what it’s like to see the changes in society throughout the years.”

Still, Kathy said she worries about new parents who have a baby with DS …but she’s not worried about them receiving sympathy cards.

“I’ve been in touch with parents who have new ones nowadays and I almost feel like we may be robbing them of the chance to grieve,” she explained, “because if they didn’t know beforehand, they did lose the child that they thought they were going to have and that is a loss that you have to come to grips with. I think they need to realize that it’s OK. Whatever they’re feeling, it’s OK. FRIENDS and groups like that are there to help with that.”

To learn more about FRIENDS, the Buddy Walk, or Down syndrome in general, visit dsfriends.net.