Stacy Bibb has the hankerings of any youngster his age--he loves horror movies, cheeseburgers, MTV, heavy metal as well as rock 'n' roll music. He attends school and lately he's developed a taste for tie-dyed T-shirts. He used to have an earring in his left ear, but it kept catching on the collar brace that holds his head upright, so it had to go.
But in other ways, Stacy Bibb is very different. Like many afflicted with cerebral palsy, his growth has been slowed, in part, because eating is physically difficult. Unable to relax his muscles, he burns up a tremendous amount of calories. At 17, he weighs only 60 pounds. And though he will continue to grow for three years, he's not likely to physically resemble his peers.
Since doctors cannot fully communicate with Stacy, they are unsure of his intellect. At school, he functions at a third-grade level.
"It's like somebody from a foreign country, if you don't speak the language, you can't tell how intelligent they are," said Dr. Scott Mubarak, an orthopedic surgeon at Children's Hospital who has tended Stacy for eight years.
"Stacy is in the group of kids who are bright and you are frustrated because you can't do more for them. It's exciting to see that technology has moved forward to improve his ability to function in society even in spite of his many handicaps. We've caught up to him."
In San Pasqual High School's special education program, Stacy has used a computer with a single tongue switch--a dinosaur compared to the technology he will soon use. With this device, there's a switch outside his mouth that's attached to his chin. He presses the device with his tongue to select an answer on the computer screen.
On Feb. 7, he scanned a series of letters, selecting them one-by-one, until he formed a message: "I love mom." While his teachers thought he was just being affectionate, they didn't realize it was Portia Bibb's birthday--a fact that Stacy remembered.
After this message, Portia and Gary Bibb redoubled their efforts to find the technology that could convey their son's thoughts and lessen his isolation. And as Mubark points out, treating Stacy will be far easier when the young man can tell him when he's in pain.
To enable Stacy to sit up, Mubarak operated on him three times in recent years to put his leg back in the hip socket. And it's not clear whether he'll need these painful operations every few years for the rest of his life.
"Think of cerebral palsy as being a condition where it's like a light switch that's always on and the body doesn't know how to relax," Mubarak said. "The muscles in the groin are so tight that they squeeze like a nutcracker and push the hips out of the socket. With this device, he can tell me when he's hurting--something he cannot now do."
Portia Bibb laughingly says her son has given her an education. Today, she has heard of music groups that many adults don't know--ones named Metallica, Poison and Skidrow. But her son has also provided her with a perspective that she never had, she says.
"Stacy is my biggest teacher," Portia Bibb said. "He shows me how to appreciate everything I have--my legs, arms, everything. The sad side is always wanting him to be able to do more than he can do. But \o7 now \f7 he will have the chance."
