Last September, Lewis Beck was struck by a car. He survived, but the 8-year-old who returned to his family and friends was not the same boy.
He didn`t look much different-still a skinny kid with a wide, toothy smile. And there was talk he would return to Arlington Heights` Windsor Elementary, a notion encouraged by cheering classmates who welcomed Lewis home from the hospital in February.
But the loquacious boy who excelled in sports and academics was gone. And now, his mother says, she struggles daily to meet the needs of what for her is a brand new son.
”You have to grieve for the child that was, but it`s hard because you see flashes of what they once were,” said Lewis` mother, Maureen.
Lewis was hit by a car while crossing a street. His head struck the windshield, causing his brain to swell. Doctors drilled holes in his head to alleviate the near-fatal pressure. For a month, he lay in a coma.
With rehabilitation, Lewis has progressed. A few months ago he could offer only a word or two, but he can talk in whole sentences now. He plays Nintendo, handing the controls to his older sister only during the hard sequences. And he`s retained his sense of humor: When asked about math, he gives a thumbs-down sign.
With improvements in medical technology and rehabilitation, children like Lewis are surviving traumatic brain injuries that once would have killed them. But the injuries leave a legacy. Doctors say that such children often suffer poor short-term memory, a diminished attention span, personality changes and other learning problems.
So Maureen Beck and another mother have formed what they say is Illinois` first support group for the families of children with traumatic brain injuries.
”You have the child you`ve loved and nurtured, and then you`re handed this new child,” said Dianne Keith of Algonquin, Beck`s partner in the group. It will meet in the Schaumburg area starting in September.
The group will talk about coping with the changes in their children and family as a consequence of the injury. They also want to exchange information on how to get appropriate education and rehabilitative services.
Keith and her 4-year-old daughter, Ashley, were on the way to the funeral of Keith`s father two years ago when the car in which they were riding was broadsided by a pickup truck. The accident left Ashley with bleeding beneath the lining of her brain.
Keith lived with Ashley in Marianjoy Rehabilitation Center in Wheaton for 12 weeks, teaching her to eat again, to pick up her head, to speak.
”Physically, she`s the same. But mentally, she`s completely different,” said Keith. ”Ashley doesn`t know how to play with other children.”
Families struggling to cope with such changes in a child have no place to turn, the group`s organizers say. ”There are needs the parents have in all the different feelings you go through,” said Keith.
Ashley is one of the 70,000 to 90,000 survivors left with an intellectual or behavioral deficit because of head injuries each year, experts say. Two-thirds of those people are under 30 years old, according to the Illinois Head Injury Association.
But children who suffer traumatic brain injuries have unique problems that adults don`t, say experts.
The most common problems in almost all moderate or serious brain injuries are losses in short-term memory, concentration, and attention span, said Puliyodil Philip, the director of the pediatric brain trauma program at the Rehabilitation Institute of Chicago.
But adults already know the alphabet, how to read and how to function socially. Children are still learning the basics of daily living. They don`t have a history of learned behavior to draw upon after a traumatic brain injury.
Fortunately, a child`s brain is still what medical experts call
”plastic,” and healthy parts of the brain can sometimes make accommodations for damaged areas.
”Even though the left side of the brain, which usually controls speech, is injured, the child might end up talking. It may be the other side is taking over,” said Philip.
But children with traumatic brain injury, whether mild or severe, may have a variety of problems. Lewis Beck`s left hand is still weak and shaky. He can`t do anything which requires much physical strength. And his speech is delayed and slow.
Students like Lewis pose a challenge to educators, many of whom are not trained to deal with traumatic brain injury.
”There isn`t any mechanism in place yet on how the public schools are going to serve this population,” said Bonnie Gladden of the Illinois Department of Rehabilitation Services. Gladden works with other state and local agencies to promote training and education about brain injuries.
”These children need to learn to comprehend, to problem-solve again. That`s not mathematics,” said Gladden.
Under a federal law that went into effect last October, students with traumatic brain injuries were added to the list of individuals with disabilities to whom public schools must provide a ”free, appropriate education.”
”The word appropriate is what everybody gets stuck on,” said Keith.
”Who`s going to play God and say what`s appropriate?”
The state is still waiting for the federal guidelines on what constitutes a traumatic brain injury, said Gail Lieberman, assistant superintendent of the Department of Special Education.
”The head-injured child is not necessarily a special education child or a learning disabled child,” said Frank Daniele, the director of pediatric social work at Marianjoy. ”The head-injured child presents different problems, so there needs to be special communication and planning between the school system and the rehabilitation team.”
Both Keith and Beck have tried, through evaluations, consultations with experts, and negotiations, to place their children in the classes best suited for them.
Neither Lewis nor Ashley is in a regular classroom. But they may be someday. Unlike adults, children with traumatic brain injuries continue to recover for up to five years after their injuries, said Philip.
”We`re calling the group Great Expectations,” said Keith. ”Because the only way these children are going to succeed is if we have great expectations for them.”
Those interested in the support group can call the Illinois Head Injury Association at 1-800-284-4442.
