Bringing Up Jeremy MRI
Page Two
As a cell biologist, Kathy had devoted her life to understanding how organisms function. So she decided to take some time off to learn more about this little organism she and Jim had just brought into the world.
Meanwhile, at OMRF, Jim set his sights on learning how signals in the nervous system and brain—in effect, the body’s wiring—influence movement, function and interaction. By isolating the nervous systems of minuscule roundworms known as C. elegans, he learned about genetic disorders like muscular dystrophy. His work taught him that, much like a single wire controls the flow of an electrical current, a single mutation in a gene can change the function of the entire nervous system. Jim understood that his work could provide valuable insight into a variety of brain disorders. But it would be years before he learned that his own son suffered from one of those conditions.
As Jeremy grew, he showed remarkable talents. At 2, he began using a DOS-based computer. By 5, he was solving mathematical equations better suited for those twice his age. But it was the simple things, the things we all take for granted, that posed the biggest problems.
Jeremy had trouble standing in line. He could tell you if he was angry or sad, but he couldn’t identify emotions in others. Body language and facial expression meant nothing to him. Eye contact was fleeting at best, and he had a hard time playing with other children.
Routine errands, things like trips to the grocery store, devolved into screaming, thrashing tantrums. “What’s the matter?” Kathy would ask. It seemed a store employee had offered Jeremy a free chocolate chip cookie. “He should have known I hated chocolate!” he would shout between sobs.
At the age of 6, Jeremy was diagnosed with Asperger’s syndrome. Asperger’s is one of the autism spectrum disorders. Children with classic autism have language delays and deficits and difficulty relating to others; they display rigid, often obsessive behaviors, and some are mentally retarded. Those with milder conditions on the spectrum, like Asperger’s, exhibit some or all of these characteristics to lesser degrees. But Asperger’s also is distinguished by average or above average intelligence.
With Jeremy’s diagnosis, the 15 years that Jim had devoted to studying the nervous system had come full circle. “Now I had a kid whose nervous system wasn’t working like a normal nervous system works,” he says. But as much as he wanted to help his son by doing research that could contribute in some meaningful way to Jeremy’s life, his expertise was the nervous system of tiny worms. In other words, says Jim, “I was a far cry from being an autism researcher.”
Jim and Kathy sought the help of professionals to teach their 6-year-old son basic neurological skills, such as how to walk up and down stairs or throw a ball to his pet dog. At one point, Jeremy received 13 hours of one-on-one behavioral intervention each week, on top of lessons he learned during the routine school day in Norman Public Schools.
“It’s really difficult for these children because their brains aren’t wired to think like other people,” Jim says. “People often don’t understand if you’re strong in one area, how you can have a deficit in another. In second grade, he was reading at 10th or 11th grade level, but if you asked him what a particular paragraph was about, he’d be three or four grades below his own grade level.”
One overriding issue was Jeremy’s need for routine. For instance, says Jim, “If I were driving home and went two blocks farther than normal, my son might start screaming. Life is not supposed to be like that; to him, it would just be wrong.”
With support from his parents, from therapists, from teachers and school administrators, Jeremy has excelled in school. By middle school, he was taking high school classes. And this year, as a high school junior, he scored 35 (out of 36) on the ACT. But on a day-to-day basis, life presents a set of challenges most of us cannot conceive.
