‘Tagalong’ Tillotson, son Stephen prepare to hit the books again|[08/10/08]

Published 12:00 am Saturday, August 9, 2008

Rick Tillotson is “just doing what any other dad would do if he had the opportunity,” he said. “Most dads don’t have that opportunity.”

The “opportunity” is going to college, in a manner of speaking, so that his son can go.

Rick, you see, already had a lot of college years under his belt – degrees from Hinds, Delta State and Mississippi College – when he decided to accompany his son Stephen to Mississippi State.

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Stephen is a junior at MSU thinking of a major in communications. He couldn’t have gone to college on his own, for “it’s necessary that somebody be there when I need something.”

Stephen, who will be 21 in November, was born with muscular dystrophy, a disease that progressively affects mainly the large muscles. Rick’s job is caregiver, and Stephen is totally dependent on him.

“Except for his brain,” Stephen’s mother, Julie, said. “There, he’s ahead of the rest of us.”

Stephen was 2 years old when his parents noticed that when he ran around or stood up, a few things appeared to be a bit abnormal. A medical exam confirmed it was muscular dystrophy.

“So I was born with it,” Stephen said. “It’s a genetic deal – nobody else in the family has had it.” He spends his waking hours in a wheelchair, but that wasn’t the case until he was 10 or 11.

“Most of my elementary school years, I was walking around – getting around for the most part like anybody else – but climbing stairs was difficult, and my balance wasn’t good, like when I was carrying a heavy book bag. For the most part, I didn’t do anything different in the course of the day from my classmates.”

In the fifth grade he took a couple of falls and fractured his ankle. He tried using crutches but couldn’t support himself, so he began using a wheelchair. Friends pushed him around and helped with his books.

Junior high presented a different challenge. He was at Warren Junior, which is built on three levels, and he had classes on each. By that time the family had a van that could accommodate wheelchairs, and Stephen had an attendant who would drive the van from one level to the next between classes.

“We’d actually go out and get in the van,” Stephen said. “That got a little old after a year,” but then an elevator was installed that made it more convenient.

At Warren Central he had classes in two-story Building B which had an inclinator, or chair lift, on the stairs, which went up a level and then made a turn, often breaking down midway.

Stephen recalled, “I had a few fun experiences waiting for it to be fixed. It was the best excuse in the world for being late to class. Some people liked to help me,” for he was their reason for being tardy.

In the eighth grade, he had major back surgery and rods were inserted to keep his spine straight, a measure to prevent future problems. He graduated on time from Warren Central, and Rick noted that, usually, “when a kid graduates from high school it’s petty much, ‘Goodbye; don’t get into trouble, boy,’ and that kind of stuff.”

That wasn’t the case with Rick and Stephen.

“We wanted him to experience whatever he wished,” Rick said. “He had been a State fan, but he would need some assistance. And I just happened to be at a point where I could retire.”

Rick had achieved a lifelong dream, that of being principal of Jett where he had gone to school. After graduating from Delta State, he began his teaching career at Jett in 1980 – when and where he met Julie Woods. It was also her first year to teach. At the end of the school term they married, on Rick’s 26th birthday. From Jett, they went to Bowmar Avenue. Rick was later principal at Sherman Avenue. Julie now teaches English in the seventh grade at Warren Junior.

The Tillotsons’ other son, Neil, is three years older than Stephen, and the two boys are not only brothers but the closest of friends. Neil has finished school and works in landscaping. The brothers’ interests often differ.

“Stephen loves to read, and Neil is just the opposite,” Rick said.

He laughs about the time he had a talk with Neil about school when he was in the fourth grade. He promised his dad, “I’ll do my best – just don’t make me read.” He recalls the time when he looked into their room late at night. Neil was asleep, but Stephen, in the first grade, had the cover pulled over him, a light, and was reading Neil’s fourth-grade book.

There was a time when Neil got a spanking from his dad, the principal, but Stephen only grinned and said, “I may have encountered him at some point, but if I did I learned pretty quickly.”

At Mississippi State, father and son live in university housing that is handicapped accessible. Rick said, “Stephen is the resident. I’m just the tagalong.”

But Stephen said of his father, “He’s my hands and feet. Once I’m up, as far as classes, I have an attendant. He’s a grad student who drives my van and takes me where I need to go on campus.”

The attendant is made possible through the rehab and the vocational department. He works for Stephen and picks him up in the mornings. Once on campus, Stephen gets around pretty well in his motorized chair. While he’s in class, his dad works part time as a supervisor and evaluator for student teachers.

In the two-bedroom apartment, Rick cooks, cleans, helps his son dress, helps him lie down to rest, and is his typist. Though Stephen writes, he can’t handle the paper or get a pencil out of his pocket by himself. Both agree they respect each other’s space and tolerate one another pretty well, despite a generation gap.

The adjustment has been a big one, not only for Rick, but also for Julie and Neil.

“I used to be Rick’s wife and Stephen’s mom,” Julie said. “But now I don’t have to take care of anybody except all those people at school. There’s nobody to cook for, to wash clothes for – the things most moms do and that I’ve always done. I went from having very little time to having too much time. When Rick moved, he assumed some of those roles.”

One of the good things that has resulted, Rick said, is “I have much more appreciation for her and the jobs that most wives and mothers do – and also for single parents.”

For Stephen, part of the adjustment has been to be more willing to let people whom he doesn’t know help him, and he’s developed an appreciation for those he has to ask for help – like opening a door or picking up something. He’s found that they are more than glad to help. He tries to be independent, he said, “but it’s a hard balance – hard to be normal when I’m not normal. I try to do what I can by myself, but sometimes it works out better if I let somebody help me. It’s frustrating when I want to do something on my own.”

Stephen’s day can be divided into the enjoyable and the challenging. He has friends who are also wheelchair bound who’ve been at State longer and have dealt with the challenges. He and they do things together, and he considers them a wealth of information. He enjoys football and basketball games, and the apartment is close to the sports complex. He seldom misses a basketball game because “it’s in a controlled environment. You don’t have to worry about the weather, hot or cold.”

Everything the Tillotsons have done has always included both the boys, and Julie said that in school Neil always watched out for Stephen, “more a mental thing than physical.”

When Stephen had surgery on his back, and both parents had to be away for an extended period, Neil was a member of Warren Central’s winningest baseball team, but he stayed at home, washed his clothes and took care of other duties and didn’t mind. “Neil’s personality is such that he can get by without a lot of attention from his parents,” Julie said.

Support for the Tillotsons has been tremendous.

Rick said a lot of people really care. Sometimes, they are people he has known; other times, people who have heard.

His mother’s Sunday school class at Immanuel Baptist Church has often helped with Stephen’s needs, and First Baptist Church, which the Tillotsons attend, provided the chair lift for the van. Stephen’s grandparents also live here, and they’ve always been ready when needed.

One of Stephen’s longtime friends, “my best friend since kindergarten,” is Jonathan Crabtree. When Stephen got his first wheelchair, Jonathan pushed him everywhere. Jonathan will marry in the fall, and Stephen will be a groomsman.

The basis for all that has happened, Rick said, is faith and trust in God. “We’re doing what we’re supposed to be doing,” he said. “Call it God’s will or whatever, I feel like I’m just doing what a dad would do. It’s where I’m supposed to be. Julie and I have talked about it. Are we doing the right thing? I think we are.”

“It has taken all four of us to make it work,” Julie said. “Nothing has been by accident. All has been divinely planned for ever and ever.”

What about the future? Stephen has thought about a master’s program but isn’t really interested in it right now. His literary love is English with maybe a career in journalism. He feels about math as Neil did about reading, so whatever happens, he said, “math is at the bottom of the totem pole.”

Gordon Cotton is an author and historian who lives in Vicksburg.