Mother labored to find reason for son's developmental delays
Tuesday, August 24, 2010
Adults who encountered Adam Driscoll as a baby tended to be impressed by his quiet, easygoing nature. He seemed happy, cried little and, by the age of 6 weeks, even slept through the night. But his mother, Jen, though grateful for Adam's placidity -- a marked contrast to his rambunctious older brother -- viewed his undemanding behavior with an uneasiness that grew as he did.
A former day-care provider who worked in a genetics lab at the University of Delaware, Driscoll knew that siblings' personalities and development varied considerably. But she worried that Adam's behavior reflected something more ominous: His muscle tone was poor, and he was stumped by things that seemed almost instinctive to other children, such as playing with toys.
Driscoll repeatedly mentioned her concerns to her pediatrician, who brushed them off. "She told me, 'He'll be fine.' "
It was years before Driscoll, who encountered similar reactions from other specialists, learned the real reason for her son's difficulties, which by then were evident in many aspects of his life.
"He's very typical in that he presented symptoms as a newborn" but a diagnosis was not made for several years, said Carole Samango-Sprouse, an associate clinical professor of pediatrics at George Washington University who is evaluating Adam, now 7.
"This is a disorder that can be easily identified or ruled out" but too often isn't, she said, because doctors are unfamiliar with the diagnosis or because they worry about labeling a child. As a result, the problem may go untreated for years, wreaking havoc on families who struggle to figure out what is wrong.
Looking for answers
Adam was born four weeks early, and doctors told Driscoll and her husband, Toby, a math professor, that was the reason he had trouble feeding as a newborn. He seemed unable to suck but then learned to do it, his mother recalled, noting a recurring pattern. "From early on it seemed like we had to teach him," Driscoll said, recalling how she taught him to pick up blocks and use a shape-sorting toy, grasping his hand and guiding it. His limbs seemed somewhat floppy, but doctors ruled out cerebral palsy.
His experienced pediatrician dismissed Driscoll's increasingly urgent questions about Adam's development. "It's not like he won't be walking and talking when he goes to college," she recalled the doctor telling her.
But by 15 months, the age at which her older son walked, Adam showed no sign of taking steps. He wasn't talking or even babbling. The staffers at his day-care center were also concerned, and the pediatrician referred him to an early intervention program.
A nurse came to the Driscolls' home to observe Adam. To his parents' dismay, she pronounced Adam developmentally on track and said he was "just about ready to walk"; in fact, he did not take his first steps for eight more months, when he was nearly 2.
Social problems were also emerging. In day care Adam "hated to have other kids approach him. He wanted to be alone," his mother said. And he seemed terrified by swings or the slide.
When he was nearly 2 1/2 his family attended a Christmas party at the home of a developmental pediatrician with whom Driscoll worked. The doctor later told Driscoll that she was struck by Adam's behavior: First he hid behind the sofa and had to be coaxed out. Then he sat quietly all night beside his parents, never running around and playing like the other children.