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Mount Vernon, Indiana.
Lisa Roach is alive with memories of Rozella Stewart. Until she entered Roach’s 26-year-old son’s life, no one quite knew what to do with him. Travis was the first autistic student in the local school system. He could talk and read like the other kids, but he couldn’t sit still and presented all sorts of challenges.
After Travis was finally diagnosed with autism at age 8, Stewart, who in the early 1990s headed the Institute for Study of Developmental Disabilities (ISDD) at Indiana University, delivered the Roach family one of its first glimpses of hope when she brought a team of experts to town to educate the educators about autism. Her tongue-in-cheek predictions of when the family’s life would settle down elicits a belly laugh today from Roach, who laughs long, hard and often when discussing life with Travis.
“I’d say, ‘Is he going to calm down?’” she says. “She’d say, ‘Oh, they get about 23, and they’ll calm down, a little bit.’ Well, that didn’t happen at 23.”
But Stewart’s oft-repeated quip wasn’t too far off, Roach laughs again. Life, she says, has started calming down just in the past year or so. And the change has been dramatic.
“Until he got in high school, he wouldn’t go anywhere,” she says. “We didn’t go out to eat. We’ve never been on a family vacation.” A few minutes later, when discussing Travis’s relationship with 21-year-old sister Chelsea, a senior at the University of Southern Indiana in nearby Evansville, she repeats, “We’ve never been on a vacation, all four of us.”
Nowadays, Travis, a rabid NASCAR fan, accompanies mom and dad on regular trips to the Bristol Motor Speedway in Tennessee to join crowds of 160,000-plus and cheer his favorite driver, Kyle Busch.
“He goes to four races a year,” Lisa says. “He really likes that.”
Using the word calm to describe life with an adult with the “high-functioning” form of autism known as Asperger’s Disorder, even one who has shown the progress Travis has, stretches its definition. Outside of the time he spends working at McDonald’s, Lisa and Travis are seldom apart. “We’re together all the time,” she says. “… There’s days when he paces and talks for 12 hours.”
Indeed, her ordeal with Travis began before birth. She spent the last month of her term bed-ridden with high blood pressure.
Doctors, she quickly adds, have always dismissed her circulatory problem as a reason why Travis developed autism. But while she believes the pervasive developmental disorder’s cause is “probably environmental … I think it’s some of the companies around here,” she’d never considered a link with prenatal toxic exposures. During her pregnancy, Lisa worked in the office at the Farm Bureau Oil Co. refinery in Mount Vernon, now Countrymark Cooperative. “It could have been,” she says.
Autism, which is marked by wide-ranging behavioral, communication and social deficits, had only appeared as a diagnostic category in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders 3 (DSM) in 1980, three years before Travis was born. Asperger’s, wouldn’t be added until the DSM 4 revision in 1994.
And in tiny Mount Vernon, population less than 7,500, no one had ever heard of autism when Travis’s symptoms appeared. Lisa says the family only recognized them years later.
“Now that we look back, we see things when he was real little,” she says. “Like when he was a baby, he wouldn’t sleep, but he wouldn’t cry. He wasn’t colicky or anything. But he would just be wide awake.” When he started walking, he would run around the kitchen table, continuously. “I mean, I’m talking 10 to 15 minutes.”
Travis was a late-talker. And he had echolalia. “He would repeat us, repeat what we’d say,” Lisa says, “and then he’d answer.”
She vividly recalls an epiphany when Travis was 6 or 7. “We lived on 10th Street then, and I remember one time, he was sitting on a chair, and I told my mom, I said, ‘He’s looking at me, but it’s like he’s looking through me.’ You know, it was like he just wasn’t there, you know?”
Despite the travails she has endured, Lisa Roach refers to life with her son as a nightmare only twice throughout an hour-and-a-half conversation. And both relate to their experiences in the Mount Vernon schools, never with Travis. “He’s a pretty neat little guy, aren’t ya Travis?” she says as he circles the living room.
Two psychiatrists had diagnosed Travis with severe attention-deficit hyperactivity disorder (ADHD) and prescribed Ritalin to help calm him for school. And it did in kindergarten and first grade. “In second grade it had an adverse effect, and he couldn’t sit still,” she says. “So second grade was a nightmare.” She punctuates the point with a lilting laugh.
But the Ritalin stopped working, and Lisa and Stan had to pull their son from school midway through second grade. At their wits’ end, Southwest Indiana doctors in February ordered an MRI on Travis’s cerebellum, which showed no abnormalities.
Travis and his mother, Lisa, have been nearly inseparable throughout Travis’s life.
“He was homebound because he couldn’t sit still,” Lisa says. “He would just run and go wild. So, his pediatrician sent him to St. Louis Children’s Hospital to a neurologist, because nobody in Evansville could figure out what was wrong with him.”
As she finishes the thought, her face alights. “There’s Travis,” she says.
Travis has re-emerged from the basement, where he was watching qualifications for the Subway Jalapeno 250 at Daytona International Speedway. He’s wearing a Duke basketball jersey bearing All American J.J. Redick’s number 4.
After circling the room several times, Travis stops for introductions. “I’m doing great, how are you doing?” he says, looking at, not through, the stranger in the room tape recording his mother’s story.
“Good to see Megan, isn’t it?” Lisa says, referring to Bloomington Alternative intern Megan Erbacher, who grew up just down the street and is best friends with sister Chelsea. She’s seated on a couch, a Nikon camera around her neck, frequently roaming the perimeter taking photographs.
“Oh yeah,” Travis says. Seconds later, he’s gone.
Travis was finally diagnosed with autistic disorder during his three-week stay at St. Louis Children’s Hospital, Lisa says, adding that the doctors also said he “maybe” had ADHD. But diagnosis means little without understanding, which was still lacking in Mount Vernon in 1991.
“It was a nightmare, because he was really the first,” she says. “They said he was like their first autistic kid.”
She understands why school officials stumbled so badly throughout their 12 years with Travis. “You know, I feel bad because they didn’t really know what to do at the time,” she says. “But they did fight me a lot on stuff.”
Some of the struggles were small, like addressing his need to rock.
“I said, ‘He needs a rocking chair in his room to relax.’
“One of them said, ‘No.’
“And I said, ‘Yeah, he can, if that’s what he needs.’
“And he had one.”
Some were crucial, like the “decision” to move him out of school to a residential center after third grade.
Travis attended summer school after returning from St. Louis, and the school provided him with a “guide,” Lisa says. But it didn’t work. “He would tell Travis, ‘Put your shoes on, I know you can put your shoes on,’” she says. “He can’t tie. He couldn’t put his shoes on.”
That’s when Stewart and the ISDD entered the story. “We got hooked up with them, and they came down that summer after he got diagnosed, with all the teachers and a lot of the administration and staff to kind of tell them about autism.”
In response, school officials decided to send Travis to a different school for third grade, she says, “thinking maybe that would be better, but it wasn’t.” Travis had another aide at West Elementary who was ill-equipped for the situation, Lisa says. “It wasn’t a very good year.” And when she went to her year-end conference, school officials said they couldn’t do anything for Travis and were going to put him in a residential center.
“Well, I left there, and I just cried and cried,” she said. “See, if I get mad, I cry, too. The madder I get, the more I fight, so I got me an advocate through the state.”
Travis stayed in school, and Lisa’s determination was ultimately validated by her former adversary. “The director of the special ed, who told me that when he was in the third grade, he thanked me when he graduated for fighting him on it,” she says.
Travis returned to Hedges Elementary for fourth grade, but no one had told the principal, apparently. “I went in to talk to the principal and kind of keep her up on things,” Lisa says, “and she goes:
“He’s not coming here.’
“I said, ‘Yeah he is.’
“She goes, ‘No he’s not.’
“She says, ‘Nobody’s told me.’”
Roach went to the superintendent and set him straight. “I said, ‘He’s one of the first of many.’ I said, ‘You people better, you know, you better be figuring something out.’”
Travis attended Hedges for fourth grade. But the aide who had been ineffectual in second grade was assigned to work with him again. That relationship was short-lived, and another aide named Tammy Wininger started working with Travis and stayed with him for nine years.
“She hardly had any training, no more than anybody else,” Lisa says, “but she just got autism. I think you either get it, or you don’t.”
Travis, his mother says, responds to positive reinforcement, not consequences, which he doesn’t understand. He also prefers isolation. So while he received special education throughout his public education, he spent little time with the other children.
“In junior high, he was with like two or three other kids who would come in his classroom part of the day,” Lisa says. “That’s the most he ever really had.”
But that phase of Travis’ education was wonderful. “The principal was great,” she says. “He’s still there.” Teachers would talk to Travis, say hi and ask how he was doing. “They made him feel like he belonged.”
Lisa Roach says parents of autistic children must fight every minute for their children’s best interests.
High school, she says, not so good. At the beginning of freshman year, Travis was separated from his longtime aide. “They didn’t want him so dependent on Tammy,” Lisa says.
But while that experiment started positively, and Travis actually attended some classes, trouble ensued. As a special ed student, he had his own teacher, which led to conflict in the ranks. “To be honest, the teachers couldn’t get along,” Lisa says. “… They were kinda at odds. So, that didn’t work out.”
Wininger returned sophomore year and stayed with Travis until he graduated.
Stewart, she continues, always emphasized the balance between academic and social whenever Travis struggled. “She used to stress, ‘What’s all the knowledge going to help him if he does not know how to act socially?’”
So Travis’s education revolved more around developing behavioral skills. And the strategy paid off. Senior year Travis took jobs washing trays at McDonalds and stocking movies at a video store. The IRS closed the video store. But Travis still works at McDonald’s, cleaning tables, emptying trash, filling the ketchup and other such tasks in the front.
“I think it’s been so good for him socially,” Lisa says, “to get out in the dining room like he has.”
One thing Travis has never thought was too stupid to learn about was sports. In fact, they’re his life. “He reads a lot,” mom says. “Sports. He memorizes sports.” Forty-five minutes into the interview, Travis re-emerges and initiates a 20-minute conversation, immediately talking about his favorite subject. His discourse is filled with passion and compassion.
“I hate to do this because it’s kind of rude,” he says, tapping his Duke jersey, “but nobody is capable of beating us.” In recognition of his guests’ Bloomington roots, he immediately apologizes, “That’s sort of adding insult to injury the way Indiana’s basketball has been the last couple years.”
The conversation about school is short. “It was pretty decent,” he says. “There was some that I didn’t’ agree with. But I didn’t have no bad times. I had a blast in high school.”
Work today? “Yes I did. It was superb.”
The drive down to Bristol? “Oh, it’s all right. It’s very, very nice.” A pretty drive? “Uh-huh.”
A reference to IU basketball and Bobby Knight, however, prompts a two-minute, mostly one-sided, numbers-filled interchange. “It just comes from a guy that’s got a good memory,” he says, “but I remember the exact date that he got fired — Sept. 17, 2000. Ironically, his last game as a head coach was also on a 17th, March 17, 2000.”
Among his many sports outings was a trip to Bloomington during the 2005-06 season. “We got to go see Duke and IU play at IU when they played them last,” he says, “Nov. 30th, 2005. Yeah, Duke 75, IU 67.”
Travis prefers mom tell the best story from that experience. Their hotel rooms weren’t ready, Lisa says, and the Duke players were staying there. “So he got to stay and see all the Duke guys walk out. We got his picture with Dickie V.”
Other topics that occupy the conversation include a bit of NCAA basketball history — the UNLV Runnin’ Rebels were never the same after Duke beat them in the 1998 Final Four — the New York Knicks and Atlanta Braves (his favorites), and of course, NASCAR, the sport de jour this summer afternoon.
“Let’s tell story about last year when my favorite nationwide driver hit the wall,” Travis says of Busch. He rattles off names and numbers and the events that led to the crash. “It wasn’t that personal, but I felt like I was violated.”
As mom talks about his collection of more than 200 VHS movies, Travis takes his leave.
“I’ll be right back folks,” he says.
Like just about any parent of a child with autism, Lisa Roach has read “a lot of books.” And she believes it has multiple causes, including vaccinations. In some children, yes, she believes immunizations probably did cause their regressions.
But she thinks Travis came into the world autistic. “I think he was truly born with it,” she says.
Lisa acknowledges the overwhelming odds she confronted in her role as trailblazing parent in her community. “I just had to fight for everything,” she says. “… You have to fight on everything, because they do not tell you.”
But the rewards are immeasurable. “I consider him a very big success story,” she says. “It was a lot of work, a lot of work.”
And her sense of humor? “You gotta laugh,” she says.