HUNTERTOWN — For years, people have asked Jefferson Hughes where he’s from. He used to say, honestly, “Fort Wayne, why?” Sometimes he’d say Yorkshire — and people would believe him. It’s not an accent though, it’s the result of the cleft palate he was born with, and numerous medical operations.
Things have never been easy for Jefferson, and that’s partly because he never stops challenging himself. For that, he has gone from relearning to speak at age 5 and being diagnosed with a learning disability, to studying atmospheric science at Purdue University on a full-ride scholarship.
Though he’s no stranger to medical procedures, it wasn’t until a couple years ago that Jefferson would talk about it. When he sat down last year to write an essay about an obstacle he’s faced in life, his mom, Laurie, said he felt like he hadn’t faced any — he was just like everyone else.
“Everyone goes through something,” Jefferson said.
Laurie Hughes’ concerns about her son started when he was around 1 year old, at which point he still hadn’t said his first words.
“When his older sister turned 1, she opened her mouth and hasn’t stopped talking,” Laurie said. “He got to be a year old and wasn’t really talking.”
Jefferson turned 15 months old, 18 months old, and still not a word. When he was taken to the doctor, the family was told not to worry until he was around 2 or 3. When it came time to start thinking about preschool, Laurie brought her son to Huntertown Elementary School to be evaluated by a speech-language pathologist. He was found to have 20% intelligibility, which meant if you knew the topic he was talking about, you could understand about a fifth of what he was saying. He used seven sounds for everything and used substitutions the pathologist had never heard before, Laurie said.
For the time being, Jefferson learned a limited vocabulary in sign language, including words like “hungry,” “more,” “please,” and “thank you,” so he could get his basic needs across.
He began speech therapy in preschool. After two years, his intelligibility increased from 20% to 50%, and then his progress plateaued, which meant one of two things: he either wasn’t trying or there was something physically wrong.
“Within the last six months, he would go to speech class and just sit there and smile,” Laurie said.
At that point, Jefferson was taken to an ear, nose and throat doctor and received a nasoendoscopy. The doctor found that his nasal sphincter, which allows air to come out of your mouth instead of your nose, almost closed front to back. Side to side, it didn’t move at all. The result was that the air that would normally come out of Jefferson’s mouth was instead coming out of his nose.
The family paid a visit to plastic surgeon Dr. Joseph Mlakar and got more bad news.
“Doctor Joe said if he doesn’t have surgery, the best he will sound is how he sounds today. As he grew, that gap would get bigger and bigger,” Laurie said.
Jefferson had to undergo the first of many operations in his life, first having his tonsils and adenoids removed, and then having three more procedures in one visit. He returned to speech therapy three months later, at age 5, and “basically had to learn everything all over again,” Laurie said. “He had learned it all wrong because of his deformity.”
Jefferson continued speech at school three times a week, and in one-hour private therapy sessions twice a week. Though he continued to progress, he saw many other kids come and go. To make matters worse, later tests showed he was two years delayed on his fine motor skills, so occupational therapy was added on top everything else.
Despite the struggle, the Hughes family felt fortunate to be in the hands of the Northwest Allen County Schools district, and one person in particular. Jefferson’s primary speech-language pathologist in Kindergarten, Stacey Zelt, worked with Jefferson in her first year teaching, and made sure she had him all 13 years he was in school. That continuity was a huge factor in Jefferson’s improvement, his mom said.
“They had a special bond — they always have,” Laurie said.
Laurie remembers when Jefferson was in second grade he asked his mom to get Mrs. Zelt an American flag for Christmas. At the time, she thought it was a bizarre request, but later found out that her old flag was burned in a ceremony after it had been ruined by a roof leak at Hickory Center, and Jefferson had noticed it was missing.
“That’s just the kind of kid he is,” Laurie said.
Jefferson continued to make headway with his speech, but one of his teachers at Hickory Center, Chris DeTurk, told the family he would likely start to struggle with his classwork around fifth or sixth grade due to his rate of progress. It was recommended that Jefferson get tested for a learning disability, after which he was diagnosed with motor sequencing delay. That especially affected his ability to write, since he would often place words and letters in the wrong order.
“He had years and years of good reports,” Laurie said. “During that time, he had lots of other problems though.”
As if he hadn’t gone through enough already, several of Jefferson’s teeth came in extremely late. During his eighth-grade year, his family took him to an orthodontist for X-rays, and the doctor found his 12-year molars had never erupted. The roots were being blocked by his wisdom teeth so they couldn’t move, Laurie explained, and the teeth were beginning to degrade. Not only did he need to have his wisdom teeth broken up and removed before he even got to high school, but he had to have other teeth pulled because they either wouldn’t move on their own or would grow in the wrong place.
The same year Jefferson’s wisdom teeth were pulled he had genetic tests done, and several of the findings pointed to a potential genetic defect. Although his heart was fine, “he had problems with his chest, fingers and ears,” Laurie said.
He’ll need a blood test to know for sure how the defect might affect him down the road, but Laurie said he can make that decision when he’s ready. Nevertheless, at age 14, Jefferson’s plastic surgery was deemed “adequate.”
Despite all his setbacks that early in life, Jefferson’s insatiable curiosity never let up, his mom said. He refused to let his learning disability get in the way of his school work, and decided to take honors English in seventh-grade. He also decided to skip seventh-grade math and go straight to the highest level offered in middle school — for no other reason than he wanted the challenge.
“That was probably the worst I’ve ever done in a math class,” Jefferson laughed. “We had a deal where I had to get at least a B, and I came close, but I think I got a C-.”
He struggled with the coursework in seventh-grade, so he decided to opt out of honors, but he still felt more independent when was taking harder classes, he said.
“In middle school, I was trying to put myself ahead because most of the friends I had at the time were smarter people and they were taking all these advanced classes, and I was in the resource room during study hall in sixth grade,” he said. “It bugged me in a way — I felt like that wasn’t really who I was.”
As soon as he got to high school, Jefferson continued to push ahead. His freshman year, he took a class that combined English and social studies, and included honor-level material. He took honors English and AP social studies his sophomore year, and the summer after his sophomore year, he decided to take geometry despite academic advisors urging him not to.
“He was bound and determined to do it, and I made an agreement with him that he had to get at least a B the first semester, and he got an A+,” Laurie said.
Since he had taken geometry already, he was able to take Algebra 2, which made him eligible for chemistry the next year.
“I wasn’t having it — I wanted to be in chemistry,” Jefferson said. “If I wanted to take a class, I would find the AP or honors class and take it.”
During his junior year, Jefferson found that when he drank from the drinking fountain at school, water would come out of his nose. Though the condition of his nose and throat was still deemed adequate, he made the personal decision to undergo a second surgery.
“That was kind of a big maturity moment,” he recalled.
All the while, Jefferson continued to push himself. As a senior last year, he spent half his days taking college courses at Purdue Fort Wayne.
“I like challenging myself,” he said. “It definitely shows in my grades because I could have stayed in the other classes and have mostly A’s. I kind of took a hit to my class rank and other things like that, but I was where I wanted to be and I was happy with it. Honestly, it didn’t really hurt me because I got exactly where I wanted to be with college and I got to keep my same friends because I was in the same classes.”
Earlier this year, Jefferson was named a Lilly Endowment Community Scholar, affording him a four-year, full-tuition scholarship to any Indiana college of his choice. He got accepted into Valparaiso University before accepting an offer at Purdue.
In order to earn the scholarship, he had to write an essay about an obstacle he had overcome in life. Although he had initially planned to write about his parents’ divorce, he remembered how difficult it had been to make the decision to get his second surgery and how he owed it to himself after the first one.
“A 6-year-old kid didn’t go through all that just to be adequate,” he said.
Jefferson was surprised by friends, family and school staff at Carroll when he won the scholarship. Oddly enough, that same morning he opened a fortune cookie that said “All your hard work is about to pay off in an impactful way.” It had been sitting for 10 days before he decided to eat it.
Jefferson studies atmospheric science because of a long-time fascination with the weather. His dad is a firefighter, and when Jefferson was younger he used to call his dad at the station to ask for the forecast.
“He was always fascinated by the weather and had this really bizarre idea that the forecast and the radar at the fire station were better than what I could get at home,” his mom laughed.
Jefferson doesn’t like talking on the phone much these days, or ordering off the drive through menu, because people often misunderstand him. He’s still working on that, he said.
Overall, though, Jefferson Hughes is a very easygoing teenager.
“As he got older, he’s a very, very laid-back kid. He’s put his foot down about two things: taking summer geometry and growing his hair,” Laurie laughed.
Jefferson also umpires at the Huntertown ballpark and loves playing lacrosse. He was on the all-state lacrosse team his junior year at Carroll and played in the East-West All-Star game. He had the opportunity to do it as a senior, but he said he wanted to give someone else the opportunity. His sister, Eryka, also attends Purdue and is pursuing a degree in food science with a minor in fermentation.
Talking about the way he speaks is relatively new for Jefferson. He joined the National Honor Society a couple years ago at Carroll and started volunteering at Habitat for Humanity. Even though he got all his required hours the first time he went, he kept going back. When people started asking him where he was from, instead of just saying “Fort Wayne,” he would tell them about his cleft palate.
“If you had told me when he was in second grade that he would be sitting where he is today, I would not have believed you,” Laurie said. “There’s nothing beyond his limits.”