Gregg Harper and his wife, Sidney, were devastated when they learned something was very wrong with their beautiful son, Livingston.
But rather than dwell on their grief or accept the limitations others placed on their child, the Harpers chose a different path. Their unplanned journey led not only to a bright life for the Harper family, but also to a first-of-its-kind program on Capitol Hill and a blessing for other families facing similar challenges.
An Uphill Battle
Gregg Harper ‘78 confesses he chose Mississippi College because he knew his high school sweetheart, Sidney Hancock, also planned to attend MC. The couple married in 1979, when Gregg was in law school at Ole Miss. The Harpers settled in Rankin County, Mississippi, where Gregg opened a law office and Sidney ‘79 worked as a labor and delivery nurse. When their son, Livingston, was born on June 24,in the summer of 1989, the Harpers’ fairytale romance seemed complete.
But Sidney and Gregg and Sidney soon began to suspect that something was wrong with their baby. Livingston wasn’t hitting the normal childhood milestones, and his overall development seemed alarmingly slow. Their pediatrician initially reassured Sidney and Gregg that everything was fine, but the Harpers remained uneasy. By two years old, Livingston was displaying other disturbing signs, from a heightened sensitivity to sound and touch to uncontrollable crying.
By the time their doctor agreed that something was wrong and Livingston should be tested, Sidney was expecting the couple’s second child. Months of tests yielded several possible diagnoses from cerebral palsy to autism, each more frightening than the last. Something was definitely wrong with Livingston, but no one in the medical community seemed to be able to pinpoint its cause. Faced with dire prospects for their son and filled with worry that the unidentified condition might also affect their unborn daughter, the Harpers prayed for strength. The couple experienced some relief when Maggie Harper arrived in the fall of 1991 beautiful and apparently healthy, but the mystery surrounding Livingston’s condition continued.
Two worry-filled years later, the answer finally came from an unexpected source. Livingston was four years old when the Harpers’ neighbor, who worked with special needs children in the Rankin County Schools, attended a workshop that referenced a rare condition called Fragile X Syndrome. The symptoms described in the workshop also described Livingston Harper. Specific tests confirmed that Livingston had Fragile X. After years of uncertainty, the condition affecting Sidney and Gregg’s child had a name. But the diagnosis brought no relief.
“It was a terrible blow,” Gregg says. “The prognosis was very negative.”
Fragile X is a genetic condition that causes a wide range of problems, including mental retardation, learning disabilities, and autism-like disorders. There is no cure, only an intense regimen of therapy and training to help those with Fragile X achieve as normal a life as possible. Nearly 20 years later, the memory of hearing the diagnosis, “Fragile X” still brings tears to Sidney Harper’s eyes.
“It was tough,” Sidney says, “It was really, really tough.”
But while the Harpers grieved for the future their child would not have, they realized that Livingston would still have a future, just a different one than the one they had imagined. Together, Sidney and Gregg decided they would not place limitations on Livingston. Instead, they would work to help their son reach his full potential, whatever that potential might be.
When the literature on Fragile X was not encouraging, the Harpers threw that literature away. When an acquaintance suggested they save themselves some heartache and “go ahead and put him somewhere now,” the Harpers ended that acquaintanceship. When doctors said Livingston would never learn to swim or ride a tricycle, the Harpers said, “We’ll see about that.”
The TEAM Act
More than 30,000 students with intellectual disabilities graduate from public high schools annually, but only about 2,500 of those students go on to college. As Congressman Gregg Harper puts it, “They make it through high school, then just drop off the educational face of the earth.” That sad situation motivated Congressman Harper to introduce a series of three bills called the Transition toward Excellence, Achievement, and Mobility (TEAM) Act that would help people with intellectual disabilities transition from secondary education into a college experience or into the workforce. The TEAM Act bills have been referred to the appropriate committees of jurisdiction, where they await consideration.
“We were on a journey, and it was a different journey than the one we had planned,” Gregg says. “But we always treated Livingston as though he was ‘normal,’ whatever that means.”
The Harpers’ determination didn’t mean the journey would be easy. Livingston was slow to learn basic skills, cried constantly, and sometimes could not bear to be touched or held, no matter how much his parents longed to comfort him with a hug. The family’s routine included days filled with therapy sessions and long nights spent driving Livingston around in the car while singing endless choruses of “Old MacDonald” to try to lull him to sleep. Through it all, Gregg continued to practice law and Sidney continued to work as a nurse while also caring for baby Maggie, who was tested and found not to have Fragile X.
“I’d pull Maggie out of her crib and take her along to Livingston’s therapy sessions,” Sidney recalls. “It wasn’t easy on anyone, including Livingston. We pushed him very hard. We never treated him as though he had a disability. Every time they said he wouldn’t be able to do something, that was what we tried to get him to do next.”
Their persistence paid off. Livingston learned to swim and to ride a specially equipped tricycle. When it was time for kindergarten, the Harpers enrolled Livingston in a mainstream school, where he took both regular classes and special education classes. The day Livingston learned to write his own name – a fairly challenging name for any kindergartener to learn to spell – his teacher called the Harpers to share the good news.
“We don’t have that piece of paper with ‘Livingston’ printed on it because his teacher kept it, framed it, and hung it on her own wall,” Gregg says with a smile.
"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him." -John 9:3
In addition to learning new skills, Livingston displayed a knack for making friends. While shyness can be a marker for Fragile X, Livingston proved to be something of a comedian, entertaining his friends with jokes and making others laugh not at him, but with him. The Harpers recall only one time when another child in elementary school teased Livingston about his disability.
“The child doing the teasing made the mistake of doing it in front of one of Livingston’s buddies. It never happened again,” Gregg says. “Livingston has always been blessed with great friends who treat him as just one of the group.”
“The best therapy of all has been Maggie,” Gregg continues, explaining that while Maggie loves her brother fiercely, “She shows him no mercy and gives him no quarter. We’ve read that siblings of special needs children tend to either resent the sibling or embrace the sibling, and Maggie embraced Livingston.”
Livingston continued to be mainstreamed into high school. As a student at Pearl High School, he sang with the performance choir and worked part time at a local restaurant. Livingston enjoyed a full and productive life, largely because the Harpers never gave their son a reason to think that he shouldn’t.
The Harpers’ experiences prompted them to reach out to other families with intellectually disabled children. Gregg Harper began employing interns from Pearl High School’s special education classes to work at his law firm, handling filing, stuffing envelopes, and providing general assistance in the office.
“For many of them, it was the first job they had ever had,” Gregg says. “I saw that we were not only giving them a small paycheck, we were also giving them hope and an opportunity to be productive. They would come in a little shy, but working gave them so much confidence. It was good for everyone in the office, too. It wasn’t just me. Everyone on my staff had met Livingston, and the entire office had a heart for these interns.”
A Moving Duet
Daniel Rodríguez is an operatic tenor and former New York City police officer known as “The Singing Policeman.” In the aftermath of the 9/11 terrorist attacks on New York City, Rodríguez’s moving performances of “God Bless America” at memorial events earned national acclaim and led to a new career as a recording artist and touring entertainer.
Rodríguez and Livingston Harper met before one of the singer’s performances in Atlanta. Rodríguez introduced Livingston to the audience that night in Georgia, describing him as “the most amazing young man. Life has handed him a curve ball, but he is dealing with it in an inspirational way.” Rodríguez went on to promise Livingston that he would someday sing at Pearl High School. Rodríguez made good on his promise, performing a special concert at Pearl High School in March of 2007. When a tuxedo-clad Livingston Harper joined the Singing Policeman on stage and the two performed an emotional duet of “God Bless the U.S.A.,” there was not a dry eye in the house. They finished to a standing ovation from the wildly cheering crowd, prompting Rodríguez to write on his website, “It was one of the most satisfying, inspirational moments of my life. Mere words could not describe the overwhelming sense of love that filled that auditorium.” Livingston Harper said simply, “This was the greatest day of my life.”
LIFE on Capitol Hill
In 2008, Gregg Harper was elected to represent Mississippi in the United States Congress. Congressman Harper took the concept for the internship program he had begun in Mississippi with him to Washington, D.C. One year into his first term, Congressman Harper partnered with the House Administration Committee and Virginia’s George Mason University to establish an internship program for intellectually disabled college students on Capitol Hill.
The interns are students in the George Mason LIFE (Learning into Future Environments) program, an educational program for young adults with intellectual and developmental disabilities. LIFE offers instruction in life skills as well as academics, with the goal of helping students find productive employment and live independently. The LIFE program was the first of its kind on a four-year, public university campus.
Interns in the Capitol Hill program have disabilities including Down syndrome, cerebral palsy, autism, and other conditions that result in intellectual or developmental disabilities. The internship program launched in 2010 with three interns placed in six congressional offices. The program has since placed dozens interns in some 70 offices, and continues to grow with every congressional term. In a time of extreme partisan divisiveness, both Republicans and Democrats participate in the program, and Congressman Harper is pleased to note that there is now a greater demand for interns than there are students to meet it.
The interns’ responsibilities include filing, entering information into computers, stuffing envelopes, and showing visitors around the Capitol. Many of the interns take public transportation to work, and all must learn to navigate the many hallways and underground tunnels of the Capitol complex with confidence, a task any newcomer would find challenging.
Candace McTeer, an economics major at George Mason University, helps place students in the LIFE program in appropriate internships.
“I wake up every day looking forward to going to work,” McTeer says. “Seeing these students succeed is so rewarding. On orientation day at the Capitol, I sometimes have to nudge them into the door, but by the end of their internships, they walk in like they own the place.”
Jordyn Dannenbaum, a 20-year-old intern from Philadelphia serving in the offices of South Carolina Congressman Joe Wilson’s office and New York Congressman Jose Serrano, began her internship in February of 2013.
“I am so happy and excited to be here. It’s an honor, and it’s a huge step up for me,” Jordyn says, a broad smile lighting up her face. “Sometimes I hang out with my friend, but I told her, ‘I’m not going to be there, because I’m going to be on Capitol Hill.’”
Conrad Wnuk has cerebral palsy, but that hasn't stopped him from serving three semesters as a Capitol Hill intern. As an experienced team member, Conrad had some advice for those interns reporting to Capitol Hill for the first time.
“It’s the work that’s important,” Conrad said. “You should be prepared for what they want you to do. If you need more work, you have to ask them, ‘Do you have more work for me?’”
“I am so happy and excited to be here. It’s an honor, and it’s a huge step up for me. Sometimes I hang out with my friend, but I told her, ‘I’m not going to be there, because I’m going to be on Capitol Hill.’” Jordyn Dannenbaum, Capitol Hill Intern
The program fosters independence, and teaches interns workplace skills that can translate to permanent employment. Perhaps more importantly, the program shows “normal” people what those with disabilities are capable of achieving when given a chance.
“It was a little different for my own office staff because they had all had experiences with Livingston,” Congressman Harper says. “But for some of the people on the Hill, their intern was the first person they had ever met with an intellectual disability. Being a part of this program has opened their minds and their hearts.”
“This internship gives Conrad an opportunity to do what he does best – advocate for individuals with disabilities by showing that individuals with disabilities have a lot to contribute to society if they are given a chance,” says Chris Wnuk, Conrad’s father. “We asked Conrad why he liked working on the Hill, and he answered that he was a part of the team. The staff treated him with respect and valued his input and contributions.”
Mary Jane Gutkowski’s son, Ryan, was one of the first interns in the program and has served on Capitol Hill ever since. Ryan has a chromosomal abnormality that affects his speech and cognitive skills, but his disability hasn’t prevented him from making meaningful contributions on Capitol Hill. Ryan has worked in 10 different offices, including those of Mississippi Congressman Gregg Harper and Mississippi Senator Thad Cochran. His work ethic has made him a favorite of Republicans and Democrats alike.
“It is a joy to know that Ryan is respected and acknowledged for what to most may seem like simple tasks, but for Ryan and those like him, can be hard to master,” Mary Jane Gutkowski says. “This internship is an amazing opportunity to have our kids on Capitol Hill, where they see and are seen by those who make policies that affect their everyday lives.”
Carol Wheeler’s son, Max, has Williams syndrome, a genetic condition characterized by medical problems and developmental delays that occur side-by-side with exceptional verbal abilities and highly social personalities. The Capitol Hill internship was a perfect match for Max’s personality and skill set.
“When his internship came to an end, Max received cards and notes from the staff he worked with saying, ‘It’s been awesome working with you,’ and ‘We’ll miss you in the office,’” Carol Wheeler says. “I’m sure some of those notes were written by people who would never have imagined how much Max had to offer if they hadn’t met him through this program. This program is good for the interns and for the people they work with. Congressman Harper and his staff deserve huge kudos for making it happen.”
“From listening to Conrad and talking with his friends, we are reminded again and again that the aspirations of special needs individuals are the same aspirations shared by every American – to get a job that allows them to gain financial self-sufficiency and to live the American dream,” says Chris Wnuk. “This internship puts Conrad in a position that allows him to put a public face on all of his peers’ hopes and aspirations.”
Jordan Dannenbaum agrees.
“I’m on Capitol Hill and I’m in my second year of college,” Jordyn says. “I am more independent than people know.”
Meet the Interns
Conrad Wnuk is completing his third internship on Capitol Hill. Conrad votes in every election and has enjoyed experiencing the process of governing first-hand in the halls where it happens. "We never see Conrad smile more than when we ask him how his day went at work," says Conrad's mother, Lynn Wnuk. "He excitedly tells us who he met and what he did. Even over the phone, you can tell he has a smile on his face. What parent could ask for more?" Sean Cross has never let Down syndrome stand in the way of his dreams. Sean has participated in several summer camp programs and enjoys working on computers. His latest achievement was reporting to work as an intern in the office of Congressman Pete Sessions of Texas. "My parents and my grandparents are so proud of me. They told me congratulations." Jordyn Dannenbaum was all smiles talking about her work as an intern in the offices of South Carolina Congressman Joe Wilson and New York Congressman José Serrano. "I am so happy and excited to be here. It's an honor, and it's a huge step up for me...I'm on Capitol Hill and I'm in my second year of college. I am more independent than people know.'" Chris Walker reported to work in Congressman Gregg Harper's office, where he hoped to perform his favorite task, computer data entry. Chris wore a suit his first day on the job, explaining how important it was to look professional in the office.
Climbing the Hills Ahead
While Sidney and Gregg Harper always encouraged him to live up to his full potential, Livingston has surprised even his parents with all that he has accomplished.
“Our goal was for Livingston to graduate from high school,” Congressman Harper says. “That was hard to imagine, and when it happened, it was like a dream come true. We had tried never to put limits on him, but we had put a limit on him by never imagining what he would do after high school.”
Livingston, it seemed, had bigger plans.
“He came home from high school one day when there had been a college fair on campus and announced, ‘I’m going to Hinds,’” Sidney says. “I said, ‘Okay, we can think about that,’ but from that day on, when people asked him what he was going to do after high school, he would tell them, ‘I’m going to Hinds.’ And after a while, I told Gregg, ‘Livingston is going to Hinds.’”
Livingston successfully completed his studies at Hinds Community College, commuting from home and earning Bs and Cs in his classes. Then Livingston went on to do something that even his incredibly supportive, faith-filled parents could never have imagined. The Harpers’ son went away to college.
Livingston enrolled at Mississippi State University (MSU) as the second of five students in MSU’s ACCESS program, a curriculum geared toward helping students with intellectual disabilities learn life skills , earn a diploma, and prepare for a productive, independent life beyond college. Congressman Harper helped launch the program by connecting MSU staff with staff at George Mason University’s LIFE program. The LIFE program served as a model for ACCESS, which launched in 2010 with Livingston as one of its first students.
“It’s so special to see Livingston go to Mississippi State because he is living out of the house,” Congressman Harper says. “He has to have the social skills to function in college, he has to get from class to class, he has to survive there on his own. We’ve seen that he actually does better without us there. When he has to do things for himself, Livingston finds a way to get them done.”
Today, 23-year-old Livingston and his 21-year-old sister, Maggie, are both students at Mississippi State. Livingston lives in the dormitory, takes regular academic courses as well as courses designed for ACCESS students, and attends sporting events and other typical college activities with his many friends.
“Livingston is better known in Starkville than I am, and that’s my congressional district,” Congressman Harper says with a smile.
Livingston plans to graduate from Mississippi State University in 2014. Like many other college students, he isn’t quite sure what life holds after graduation. The Harpers hope that Livingston will find a job that will allow him to support himself and to live independently. But while his parents are realistic in discussing their son’s future, they have also learned not to place limitations on Livingston, and through their experiences with their own son, on any other person with intellectual disabilities.
“There’s no doubt that anyone can do better if they’re pushed, encouraged, and given an opportunity,” Congressman Harper says.
The Harpers acknowledge that they still wonder from time to time how things might have been different if there had been no Fragile X.
“When Livingston was young, it hurt me knowing he wouldn’t be able to play or participate in sports, and then when he got older and I realized he wouldn’t be dating, I would worry, ‘Will he always be alone?’” Sidney says. “Realizing the things he wouldn’t be able to do made me sad, not for me, but for him. But then a friend said, ‘God made Livingston that way. He is special, and one day we’ll know why.
“This is Livingston,” Sidney continues. “God gave him to me, and He gave him to me this way for a reason. I look at the way Livingston has affected people and what he has accomplished. He is unique. And I don’t ever think of Livingston any other way.”
“Livingston is great,” Congressman Harper says simply. “I don’t want him to be different for me. There are some things that I want for him, but that’s not for me to control. We have John 9:3 as our promise. When Jesus healed the blind man, he told people who asked why the man was blind, ‘Neither this man nor his parents sinned, but this happened so that that works of God might be displayed in him.’ He was born blind so the power of God could be demonstrated.”
Congressman Harper pauses. His eyes fill with tears, yet he breaks into a smile as he says, “We love our ‘normal’ child, Maggie, so much, but it’s hard to articulate how we love Livingston.”