By Emily Lane/The Clarion-Ledger
JACKSON — Something was wrong with their son.
U.S. Rep. Gregg Harper and his wife, Sidney, spent the first two years of first-time parenthood tracking developmental delays, consulting with doctors and watching every subtle move of their son, Livingston.
“Everything he did, it was late,” said Harper, Mississippi’s congressman for the 3rd congressional district. “Or if a milestone was nine to 12 months, he would make it at the end of the last month.”
And then there were other signs. Livingston’s parents noticed the flapping of his arms, a tell-tale sign of autism, among other things. He was sensitive to light and didn’t like being touched or hugged too hard.
It took one phone call to validate their worries.
Dr. Dennis Rowlen, not only a pediatrician but Harper’s classmate from Mississippi College, was on the other end.
No matter how many times the Harpers and their doctors optimistically dismissed baby Livingston’s developmental delays as normal — for a boy, Harper was now charged with telling his wife the news.
But he just couldn’t.
“I said, ‘Dennis, I can’t tell Sidney, can you come by the house?’ ”
The couple, who had put off having children for 10 years, had just returned from vacation. Livingston, who tested with a normal IQ at age 2, wasn’t feeling well that day, and had been taken to the doctor.
“He sat us down,” Harper said.
After that there were various types of early intervention therapies and series of tests. But no answers came.
“We went through a whole, long process,” Harper said.
It would take another two years of missed milestones before a diagnosis.
Tests, doctors and specialists later, it was the jaw-dropping realization of a close neighbor who attended an education seminar that helped the Harpers discover this thing was Fragile X Syndrome.
Pam Hopkins Harris was like an aunt to Livingston, Harper said, and she was also the head of special education at Rankin County Schools. She knew the Harpers were searching for the answer and she knew she had found it during the seminar when Fragile X was discussed.
Doctors soon confirmed it. Fragile X, similar to autism, causes learning and behavioral challenges. A common misdiagnosis for Livingston’s condition was cerebral palsy, Harper said. It’s the only inherited form of autism.
Livingston was 4 when they discovered this. When Rowlen first made the call to Harper, Livingston was 2, and Sidney was in her second trimester with their second child.
Harper said he and his wife “might have prayed a little extra” but never worried about the potential of Maggie being born with a disability.
“We don’t worry about things we don’t have control over,” he said.
Maggie, now 21, attends Mississippi State University. She was born without Fragile X or any other mental health conditions.
Livingston, 23, is in his first year as a student at MSU.
College was Livingston’s idea. He came home from Pearl High School one day after a recruiter visited and told his parents he wanted to attend Hinds Community College. After a taking some courses and living at home, Livingston made the jump to Starkville.
“I never, probably 10 years ago, envisioned at all (Livingston) living in college campus and living at the dorm,” Harper said. “And shame on me for not thinking it.”
Livingston is a huge country music fan. Each morning he meets with his instructor and a handful of other members of MSU’s ACCESS program, an inclusive program that guides students with disabilities through their college careers. He does laundry. He doesn’t drive, but he has plenty of friends who pick him up to go out to eat. He attends basketball and volleyball games and a host of other activities.
“He’s an event fan,” Harper said. “He likes to go where the action is.”
He takes regular college courses and has become quite the guy to know on campus.
“He’s probably better known up there (in Starkville) than I am,” Harper said. “And that’s my congressional district.”
Livingston is personable. At Harper’s recent staff training session, Livingston gave a speech about the ACCESS program. As he spoke, he shifted his weight and his eye contact waivered. But his eyes did lock every so often, especially when he was ribbing someone in the audience. Joking seems to put him at ease.
The biggest worry Harper has when Livingston is in the room full of people is that he will crack everyone up at an inappropriate moment.
“We’ll be in a group … It’s serious, but he’ll say something that’s so hysterical. And once he gets everybody to laugh, it’s over.”
Harper talks about his son with extreme comfort and familiarity. Everyone who works with Harper knows Livingston well, and the college man seems to have a nickname or inside joke to harp on whenever he crosses paths with his father’s colleagues. Both “mayor of munchkinville” and “the three stooges,” were a sampling of nicknames Livingston dropped at the recent staff training.
Harper said he’s made a concentrated effort to integrate his son into his work. Livingston has walked the halls of the Capitol, took tours of the flooded Mississippi River and even wrote a letter to Sen. Marco Rubio, the rising GOP star from Florida. When Livingston stops by Harper’s Washington, D.C., office, Harper said he barely knows he’s there because Livingston is busy with the other staffers.
Proactively exposing Livingston to his work is not an idea that ends with his son. Harper hired special education students from the Pearl High School at his law firm before being elected three terms ago.
Harper is also involved with a pilot program through George Mason University that sets up people with intellectual disabilities with an internship at more than 20 Senate offices.
“It’s really been amazing to watch,” he said.
“(Some) begin the semester where they’re a little scared and nervous, and by the end, they’re comfortable … and a lot of them navigate the offices better than a lot of members.”
Lessons of his own lowered expectations for Livingston are, in part, why Harper feels passionately about bringing issues for people like Livingston to his policy agenda.
Last month, Harper introduced a set of three bills that put in place measures to ease the transition of people with intellectual disabilities from secondary education to the workforce. One of the acts “TEAM Act — Education,” focuses on the transition to college.
“I was the one putting a ceiling on him that didn’t have to be there,” Harper said, then paused. “That’s why this legislation is important to us.”
Harper said he’s not sure where Livingston will be a decade from now, but the fact that 10 years ago he never would have guessed Livingston would be living in a dorm and attending university courses bodes well for his son.
“I don’t know what’s in 10 years,” he said. “I’m not sure I need to.”
Livingston hasn’t fully grasped the concept of money yet, but Harper said he hopes his son will in 10 years be living independently, perhaps with minor supervision, and supporting himself with a full-time job.
The literature on Fragile X was not optimistic, Harper said. So the family made the decision to not absorb it if it meant their perceived limitations of Livingston would block him from stretching the bounds of what he is able to do.
Harper said the TEAM Act, an acronym for Transition toward Excellence, Achievement and Mobility, is legislation designed to help every person with intellectual ability have the chance to realize their potential.
Harper said he realizes other people like Livingston often are not as lucky as his son, nor do they have as much support.
“I carry that with me wherever I go,” Harper said.
“You do think about — what can we do to help some of these families, equip their family to do something great, overcome some pretty significant obstacles —that’s a big part of it.”
Harper said he’s fairly certain issues regarding people with intellectual disabilities would not have been on his radar at the level it is if not for his son.
“I wouldn’t trade Livingston for anything,” he said. “He opened my eyes to things I probably would have missed.”
Harper also introduced a bill last week that removes part of a law that allows employers to waive minimum wage for employees with disabilities.
Some disabled people were earning three cents an hour because of the loophole, a nnews release from Harper’s office said.
“(Livingston) has helped us realize there are a lot of families . and everyone has their own set of problems so we try to concentrate a little bit more on mercy and a little bit less on judgment.
“Everybody needs a little help, encouragement, a pat on the back,” Harper said.
People with disabilities don’t need pity, Harper said. Instead, he said, they need a friend. The lessons of his son taught Harper that all people like Livingston deserve a support system.
“(Livingston) changed us. He changed us for the better.”