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Raising Isaac Bradenton family navigates through the perplexing world of autism |
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Inside a small apartment at Colonial Grand at Bayshore, 7-year-old Isaac Neufeld wraps himself in a blue blanket and jumps off the couch, giggling with glee. His younger brother, Cameron, quickly follows suit, and the two are soon running around the living room squealing with abandon, much to the chagrin of older brother George, who's trying to concentrate on a video game. The walls are covered in crayon (Cameron's handiwork), and the furniture is sparse: a sofa, an entertainment center, a few kitchen chairs. In the back corner, their father, Bruce, a student at the University of South Florida majoring in computer engineering, sits in his sanctuary consisting of a computer, desk and bookshelf covered with neatly-lined, assymetrical rows of technical journals and textbooks. His wife, Dorothy, is getting ready to go to work as a nurse at Blake Medical Center's emergency room. They are, by all accounts, a happy family. A family that shares a trait with about 54,000 other families across the United States: one of their children is autistic. Before you read any further, forget everything you've learned about autism from watching movies like "Rain Man." They're not all savants who can tell you how many toothpicks are in a box with a glance, or who can recite an entire classical piece after just one listen. They don't all have a severe aversion to physical contact. And they don't end every sentence with "yeah." In fact, Isaac has none of these traits. He has a short attention span, has problems communicating verbally and sometimes doesn't know his own strength. But he's constantly laughing and cheerful, and there's nothing he enjoys more than a good old bear hug. Autism is a disorder that even the medical community knows relatively little about. More is being learned every year about defining characteristics and therapeutic techniques, but the cause of the disorder is still very much in the hypothesis stage. Theories abound, but they're just that: theories. The result is that families like the Neufelds often feel like they're on their own. Helpless. Bewildered. And struggling to cope. "Some days I do really good," Dorothy says. "And some days I cry at the drop of a hat."
A COMPLEX DISORDER The clinical definition of autism in "The Merck Manual of Medical Information" reads as such: "A disorder in which a young child can't develop normal social relationships, behaves in compulsive and ritualistic ways, and usually fails to develop normal intelligence."
If that sounds pretty vague and wide-reaching, that's because the disorder itself is vague and wide-reaching. Every autistic child is unique in his or her characteristics, says Glen Dunlap, a professor at the University of South Florida in Tampa and executive director of the USF Center for Autism and Related Disorders. "We don't know what causes autism," Dunlap said. "There is a pretty wide agreement that it's not associated with one single cause, and it's very likely that people who have been diagnosed with autism have their disability caused by different factors." Some theories think genetics may play a role. That would make sense in the Neufelds' case, since Dorothy has a cousin in Scotland who has Asperger Syndrome, a form of autism. Some links have been made to prenatal difficulties, although there were none with Isaac. There are some defining characteristics that help physicians diagnose the disorder. The major ones are difficulties with communication and social interaction. Autistic children prefer to be alone, become excessively attached to familiar objects, are unable to communicate in normal speech patterns, and continuously repeat certain acts and rituals. Such characteristics typically begin to manifest by age 2. With Isaac, the disorder causes him to experience stimuli in a different way than normal children. Wrestling is fine, but a light tap on the shoulder can be terrifying. His speech consists mainly of grunts and nonsensible syllables. In Isaac's world, furniture is something to be taken apart and examined, wallpaper is meant to be taken down. Clothes are nonessential, and therefore don't need to be worn (causing some embarrassing moments in public.) And it's useless to try to repair any damage inflicted on the apartment, because Isaac will simply inflict the same act to satisfy his need for continuity. Compounding the situation is the fact that, to the general public, autism is a disorder about which they know nothing or have misconceptions about. "It's a lot better than it used to be, but in general I'd say autism is misunderstood," Dunlap said. You don't have to remind Bruce and Dorothy Neufeld of that. They've been reminded every day for the past five years.
'THERE HAS TO BE A MISTAKE' The Neufelds first began to notice something was wrong when Isaac was 18 months old.
Initially, he developed at the rate of a normal child, some might say even faster. His parents remember that, when they were toilet-training George, Isaac could form complete sentences like "Where did Georgie go?" when he was just a little more than a year old. Then people at his day-care center began to notice that he was withdrawing from the others. His speech patterns started to regress. He would wander off by himself, preferring isolation to interaction. At first, his parents didn't think much of it. George was a late talker, after all, and every child develops differently, they told themselves. But it gradually became more and more apparent that there was indeed something wrong with Isaac. After a series of tests, doctors finally delivered the diagnosis: Isaac was autistic. "The biggest feeling was one of denial," Dorothy said. "You think, 'It can't possibly be, there has to be a mistake.' You're angry, very angry about the whole situation. "The hardest part for me was, being a nurse, I'm used to very specific things to treat illnesses. With autism, nobody really knows. Education helps and speech therapy helps, but there isn't a specific course of action, like 'put them on this medicine or do this.' You don't know what course of direction to take as a parent. It's like, 'OK, we have a kid who's autistic. What do we do now?' And nobody could tell us." The Neufelds turned to articles, books, the Internet, anything they could find dealing with autism. Some things helped. Some didn't. For every article based on scientific fact, there were a dozen based on what Bruce bluntly calls "quackery." "You really have to watch out," he said. "There's a lot of fringe stuff out there. When I hear things like 'I cured my son of autism,' I say, 'Let's see the study.'" Although they received support from physicians and autism societies, for the most part, the Neufelds were charged with finding out information on their own. Years after he was diagnosed, Isaac was still having problems with incontinence, tearing up the furniture, leaving Dorothy covered with bruises with his overly aggressive affection. "Sometimes you feel like you're on the edge," Bruce said, "but you just have to suck it up and say, 'Let's go on.'" Fortunately, they did find one area that was able to help them in their ordeal: the Manatee School District's communication disorders and autism program.
A SPECIAL CLASS Christa Birch's classroom at Orange Ridge-Bullock Elementary School is decorated much the same as any other. Construction paper decorations dot the walls, art projects are displayed prominently, and charts of animals and their offspring adorn the bulletin board to help students remember their math.
But instead of individual desks, all the children sit together at long tables pushed together. The teacher's desk is noteably absent as well. That's probably because Birch wouldn't have time to sit even if she wanted to. Her job is one that keeps her in constant motion. One minute, she's calming down a child by employing a relaxation technique on the floor. Another minute, she's reminding a student to keep his mind on the project at hand instead of playing with a radio. The next, she's coaxing a child to rejoin the group instead of playing by himself in the corner. It's a challenging job for the special education specialist, but one she loves. "Taking a person who can't express themselves and giving them different methods to express their wants and needs is extremely gratifying," Birch said. "We try to treat them not as a class, but as family. They are our boys." The class includes children in first to fifth grade, ranging in age from 8 to 11 (Isaac is the youngest.) Training is three-fold: speech therapy to help them communicate, occupational therapy to help them control their physical mannerisms, and classroom teaching. Isaac joined Birch's class about a year and a half ago, switching from Palma Sola Elementary's special needs program. Since then, both his parents and Birch agree that he's improved significantly. He's almost mastered potty training. He's learned to express his needs without hitting or biting. And sometimes he's able to form words, albeit not with perfect enunciation and not in complete sentences. "Autistic children have difficulty expressing themselves, and because of that, you see behavior and interaction that's different from other kids," Birch said. "It's expressing communication that's the key. If they can do that, then everything falls into line. That was Isaac's major breakthrough. Once he learned how to communicate his needs and learn what was acceptable, the difference was amazing."
FORGING AHEAD At the Publix supermarket on Bayshore Drive, Isaac is growing restless. Dorothy has stopped her cart by the deli and is ordering some cold cuts for lunch. Isaac, buckled in the cart's seat, smells the rotisserie chicken and demands that his mother get some. Loudly. Dorothy smiles uneasily and tries to hurry the transaction. Other shoppers stare, some in amusement, others with looks in their eyes that say, "Why can't you control your child?" It's moments like this that are sometimes the hardest. The looks. The rude comments. The reminder that your child is different from others with a big punctuation mark. "I get people staring at me a lot, which is OK, because if a kid screams in public, a crowd should look," Dorothy said. "But once they realize there's something different going on here, you're like, 'You can stop staring now.'" Taking Isaac to the grocery store is actually an exercise to help him recognize shapes and colors. On most days, Dorothy can handle the outbursts and the usual crowd reaction. On other days... well, some days are better than others. Dorothy and Bruce both cope with Isaac's disorder in their own ways. For Dorothy, it's her work and her faith. She's able to attend worship services (and gain a little inner peace) at First Church of the Nazarene, thanks to volunteers who play with him during Bible study. "It gives me a chance to go out once a week and feel like normal family," she said. "Other families, if they want to go to church once a week, it's not big deal. We can't do that. There's a lot of things in everyday life that you can't do as easily." For Bruce, it's going to school and spending time at his computer work station, the one part of the house that's deemed off-limits to others. Having an autistic child, and the sometimes chaotic lifestyle that comes with it, was hard for him to adjust to. A self-professed anal retentive (he can tell you exactly how many miles it is from his house to U.S. 41, from U.S. 41 to the Sunshine Skyway, etc.), he copes by reserving little spots that are his and his alone. "Something has to give, and that something is the absolute cleanliness in the house," Bruce said. "We tend to do things in bundles, which I don't like. I like everything ordered and in its place." The Neufelds continue to conduct as much research on autism as they can in the hopes of helping their son. They recently began trying a new diet as part of a University of Florida study in cooperation with Johns Hopkins University to test a theory that autistic children have a problem processing dairy and grain products, and that the problem may contribute to autistic tendencies. After two months on the diet, they can already notice changes in Isaac's behavior, they said. In fact, Isaac continues to surprise them with little steps of progress, be it forming audible words or breaking a routine. He has even taken on the role of protector to Cameron. His parents think it may be a result of when Cameron was born - Dorothy gave an emergency birth on the kitchen floor, and Isaac was watching from the couch. Do they have hopes that someday Isaac will be "cured?" No, even if they found a cure tomorrow, the damage already done to his mind is probably too long-term to be reversible. But they do hope that they can alleviate the characteristics. In the meantime, they try to educate as many people as they can about autism. "A lot of times, when people stare, I will say, 'This is my son, and he has autism,'" Dorothy said. "When you start doing that, you have the chance to educate, and surprisingly, people will listen." Their long-term goal? That's simple. It's the same as any other family. "My highest goal for my family is for each one of us as individuals to be happy, to be able to meet our fullest potential, and to be able to support each other," Bruce said. "I see Isaac as unexplored potential . . . he is very possibly a person of much higher intelligence than we can imagine." "We just want to give him the opportunity to do everything and to be part of life," Dorothy said. "Just like the rest of us." Isaac takes his blue blanket, flings it over his shoulders like a cape, and runs around the room like a superhero. A grin stretches from ear to ear, and the sounds of his laughter echo long and loud.
Rod Harmon, features writer, can be reached at 745-7051 or rharmon@bradenton.com More information
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