The year was 1988 and a research study on pregnant women was being done at Indiana University School of Medicine.
Blood tests were being given to see if certain markers were present -- markers that might increase the chances of a baby being born with Down syndrome.
Dr. Richard Schreiner had just been named chairman and physician-in-chief at Riley Hospital for Children at IU Health. He and his wife, Pat, had three children – and they were expecting their fourth.
The Schreiners – he a doctor and she a pediatric nurse, both medical minds – volunteered to be part of the research study.
When the results came back, the markers were present.
The couple opted for an amniocentesis. Dr. Schreiner was at Riley when the call came from the IU genetics department.
Your baby, Dr. Schreiner, will be born with Down syndrome.
In that moment, nothing else mattered. Dr. Schreiner left the hospital and went home to tell his wife.
He and Pat took a walk. They talked. They had already discussed this possibility. They were, in some ways, ready for the diagnosis.
“I’m sure we were sad, but we were not distraught by any means,” says Dr. Schreiner. “We knew what we were going to do.”
Of course, they would have baby Kelley. Of course, they would love her. Of course, she would be treated just like their other three children, Kristen, Rich and Kim.
Kelley would be yet another blessing. A fourth blessing. An incredible blessing.
Kelley Schreiner comes to the door of Down Syndrome Indiana’s office in her royal blue polo shirt. She reaches her hand out and smiles.
This is where 29-year-old Kelley works one day a week, doing office work and writing thank you notes. She also works at Best Buddies and at LongHorn Steakhouse, where she cleans and puts silverware in napkins.
But her dream job? “I would love to work for the Pacers one day,” she says.
Kelley calls herself a bit of a tomboy. She likes art, especially paints and pastels. She says her specialty in the kitchen is chocolate chip oatmeal cookies. She’s also a stellar athlete.
She plays soccer, track, bowling, bocce, cornhole, golf, swimming and -- her favorite -- basketball.
“I like 3-pointers. I like doing layups, too,” says Kelley, who also goes by The Kelster (a nickname given to her by one of her brother’s soccer friends). “I’m more likely to get points from the 3-point line.”
Kelley has won more than 100 medals in Special Olympics, 50 of them gold medals.
But, perhaps, Kelley’s most impressive venture of all can be found in the words on a tiny little card lying next to her on the table.
At first glance, it looks like a business card. On the front is a black capital R inside a red circle with a slash through it.
Below that circle is the phrase: “words hurt.” On the back of the card it reads: “When you use words like ‘retard’ and ‘retarded’ it hurts people with disabilities. Please choose your words carefully. Use Respect.”
Kelley wrote the words on those cards and she carries them with her. “I use them if someone says the ‘R’ word,” Kelley says.
If she hears a person say “retard,” she simply hands that person a card. Kelley has given away thousands of those cards. She also gives speeches, talking about the “R” word, teaching people why it’s not OK.
When she hears that word, Kelley says it makes her feel “sad” and “upset.” But she also says it makes her temper boil.
Kelley’s wish is that people who meet her for the first time would talk to her, look her in the eyes. Don’t act like she’s invisible. Ask her the questions, not her parents. She is an adult.
And Kelley’s one piece of advice to the world on how to treat someone with Down syndrome: “Be yourself.”
As Dr. Schreiner listens to his daughter, he smiles. He is so proud.
Throughout their careers, Dr. Schreiner and his wife had seen many kids with Down syndrome.
They knew what to expect. After Kelley was born at IU Health University Hospital, she was sent home within days but needed oxygen and a feeding tube.
At 6 months old, Kelley went to Riley for open heart surgery. About 50 percent of children with Down syndrome are born with birth defects of the heart.
For Kelley, she had one of the more severe defects -- atrioventricular canal defect, a large hole in the center of the heart, involving both the upper and lower chambers.
“It was touch and go for a while,” Dr. Schreiner says.
“I’m doing good now,” Kelley says, as her dad is telling the story.
She most certainly is.
Kelley is funny. Not just a little. She’s really funny.
As Dr. Schreiner talks, she interrupts, “Dad, why don’t you go take a walk?”
She wants to tell her story without hearing him interject with his own stories.
“This is supposed to be about me,” she then says with a sweet smile.
As Kelley talks about her two nieces and four nephews, about being an aunt, she says, “It’s fun and they’re not my kids so I can just return them.”
To see Kelley is to see something wonderful. She is a bright light for families who have just been told their baby will have Down syndrome or for families trying to adjust to life with a child with Down syndrome.
“Most don’t know anything about it. They might have heard about it, but they don’t know anyone with it,” says Dr. Schreiner. “Once they have a kid with Down syndrome they don’t know what to do.”
Kelley talks to those families.
“I tell them what I do,” Kelley says, “and what their kid can do in the future.”
“She does,” her dad says. “And that helps them a lot. It absolutely does.”
Of course, things are better now than they were even in 1988. There have always been the stares. There have always been the questions. There have always been those who act like people with Down syndrome just don’t exist.
“But people are much more receptive and interactive,” Dr. Schreiner says. “And the kids are wonderful. The kids in her class at school were just wonderful.”
Kelley graduated from North Central High School. Then, she went to IUPUI to be part of a pilot program taking sports courses. Right now, she is at Butler University taking a basketball course.
Her success has so much to do with her parents.
“My mom is always there for me,” Kelley says. “I like that my dad is here.”
When Kelley was a young teenager, Dr. Schreiner and a group of other fathers of children with Down syndrome started a group in Indianapolis called D.A.D.S. – dads appreciating Down syndrome.
That group has grown to more than 50 chapters in the U.S. and beyond. The Schreiners have witnessed great things happening when it comes to Down syndrome awareness.
“We’ve seen wonderful changes,” Dr. Schreiner says. “There is still a long way to go, though.”
With people like Kelley around, the world is moving closer, little by little.
One simple word Hearts know what to say
One dream can change the world
Keep believing till you find your way.
– Lyrics from Kelley’s favorite song “One Voice” by Billy Gilman.
October is Down Syndrome Awareness Month. One in 800 babies are born with Down syndrome. The genetic disorder occurs when a person is born with an extra copy of chromosome 21. Down syndrome causes developmental and intellectual delays, among other health problems. For more information, click here.