Longform

Communication Breakdown

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The Joneses also use another ABA method with Jack. Every skill that Jack does not naturally perform on his own -- from pouring cereal to tying his shoelaces -- is prompted by a cue and then broken down into small steps. When it is time for Jack to brush his teeth at night, his parents show him a small card with a picture of a toothbrush. Because he has brushed his teeth so many times before, he knows what is supposed to happen when he sees it. But first he must have each of the steps broken down for him: Get toothbrush, get toothpaste, get towel, unscrew toothpaste tube, turn on faucet, run toothbrush under water, squeeze toothpaste onto toothbrush, put toothbrush into mouth, brush teeth, spit toothpaste out into sink, rinse mouth, wipe mouth with towel, rinse toothbrush, turn off faucet, put toothbrush back in holder, put cap back on toothpaste, put toothpaste back in drawer, hang up towel. Jack must follow similar instructions for every single thing he does. The theory behind this technique is that as children grow accustomed to certain tasks, they no longer need such specific prompting; the ultimate goal is for the child to one day participate in normal social settings without being entirely dependent on others.

But ABA requires a lot of patience, a lot of time and, often, a lot of money. John Jones discovered these things the hard way. But it wasn't his own impatience that he struggled with; it was resistance from the Boulder Valley School District that cost him time, money and heartache.

John Jones knew something was wrong with his son from the very beginning. Jack wasn't following objects with his eyes like most babies, he wasn't rolling over in his crib at the right age, and he wasn't responding to his parents. When Jack was seven and a half months old, Jones and his wife took him to a doctor who diagnosed him with Williams Syndrome, a disorder that affects cognitive, behavioral and motor-skill development. The blood test that detects the birth defect was invented just six months before Jack's June 25, 1994, birth. Kids with Williams Syndrome typically have no fear of strangers, are very affectionate and outgoing, perform poorly at math and have a strong vocabulary. But not Jack. He shied away from strangers, wouldn't return his parents' embrace, and certainly didn't talk.

For the next couple of years, the Joneses researched every disorder they could in an effort to find out what else was wrong with their firstborn child (Jack now has a younger sister who does not have any disabilities). Jack's mother reviewed every Williams Syndrome Association newsletter that had been published in the past couple of years; the Spring 1994 issue contained an article about a little boy in Chicago who shared all of Jack's behavioral characteristics. Jack's mother called the other boy's family and learned that they were putting their son through a rigorous behavior-modification program that consumed up to forty hours a week. "We thought that was nuts," Jones says.

During the first three years of Jack's life, the Joneses tried every kind of therapy imaginable to bring their son out of the "box" in which he was trapped: speech, occupational, physical, holding, screaming and music. "The only thing we haven't done yet is dolphin therapy," Jones says. "By age three, when Jack still hadn't snapped out of it, we took him to a pediatrician."

The doctor concluded that in addition to Williams Syndrome, Jack had autism. After Jack failed to respond to any of the therapies the Joneses tried, they called the Chicago family back and asked what they were doing for their son, who also had both disorders. The boy's mother said she was using ABA and that her son was improving dramatically; she spent hours on the phone with Jack's mom explaining how it worked and recommending books on ABA. Shortly after Jack turned three, his parents hired an ABA tutor; she spent ten hours a week with Jack and used ABA to teach him to pay attention, to sit still, to make vowel and consonant sounds and to imitate simple physical actions such as raising and lowering his arms. The Joneses gradually increased the tutoring sessions until Jack was spending thirty hours a week on ABA. Four weeks into the new program, Jack was able to pay attention for fifteen minutes at a time, to focus on learning how to differentiate between objects and to match colors and shapes. "The difference in Jack was unbelievable," Jones says.

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Julie Jargon
Contact: Julie Jargon