At center of a dispute: Travis, a child in need

June 15, 1999|By Michael Olesker

TRAVIS GORDON'S life reads like a grim report card from God. It reads of heartache that began at his birth and continues today with courtroom arguments over how he can spend his life most fulfillingly, and who will pay for it, and where a community's responsibilities lie.

The story begins Jan. 27, 1991, when Travis was born to Kathy and Dr. Roger Gordon, after three days of labor. In his first six months, the boy had trouble breathing. In his first three years, he failed to talk, failed to make eye contact, failed to walk. Doctors said Travis merely needed time to "catch up."

When he was 4, the diagnosis changed: Now it was called Duchenne's muscular dystrophy, a severe neuromuscular problem with genetic origins. Later, the diagnosis would worsen.

At Johns Hopkins Hospital, the Gordons, emotionally crushed, remember being told, "The community will rally around you." They say it has instead turned on them. They say public school officials in Howard County, where they live, have stood in Travis' way.

"They don't want to invest money in a dying child," Roger Gordon said yesterday, choking on the words.

County officials say that's not so, that they want to care for Travis -- within the structure of the public schools. The Gordons say such care is tragically insufficient. School officials say their experts have designed programs for disabled children, so they should decide. And a series of courtroom confrontations has left the matter unclear -- while Travis Gordon struggles with his life, and his parents are emotionally bereft and financially broken.

In 1995, the Gordons enrolled Travis at Hopkins' muscular dystrophy clinic. There, doctors noted his continuing inability to make eye contact or speak. They sent him to Kennedy Krieger Institute, where longtime suspicions were confirmed: In addition to the muscular dystrophy, Travis, they said, also has autism, an interference with the development of the brain.

"Crushing news," Roger Gordon remembers. He ran down the disease's symptoms: "An inability to make sense out of everyday activities. An inability to filter information, which leads to confusion and violent outbursts, including screaming and injuring yourself."

Travis would flap his hands against his ears, grimace and make guttural noises when excited or agitated. He'd latch onto anything within reach. If he saw a traffic light turn red, he would lose his composure. And he was hyperactive.

One sliver of early hope: Howard County's public schools are among the state's most enlightened. The Gordons enrolled Travis in special county programs -- until his behavior became a problem.

Once, he fell from monkey bars. Lack of school supervision, the Gordons said. Doctors at Kennedy Krieger said Travis needed a classroom with no more than 10 students, and one-to-one teaching. It was the only way he might learn. They stressed the dangers of putting him in a conventional classroom setting.

"We were told," Roger Gordon says, "that a conventional classroom setting was dangerous and ill-advised. His autism creates a situation where he becomes unaware of potential danger. School inclusion programs are designed so that children with pervasive developmental disorders can emulate normal children. But Travis doesn't fit into this category. If he tried to copy another child, he might injure himself."

In 1996, the staff at Kennedy Krieger started Travis on psychoactive medications. He began to talk in short sentences. Encouraged, the Gordons met with Howard County school officials, asking them to recommend Travis' full-time enrollment at Kennedy Krieger.

If school officials agreed, then the county would have to take over the costs -- about $65,000 a year. But they did not agree. They said their programs were sensitive and sophisticated enough for Travis.

"But," Roger Gordon says, "they've never before encountered a child with this combination of disabilities. It's extremely rare. We've been unable to find more than a handful of cases in the world's literature."

In 1996, county officials said they would place Travis in a class of 26 pupils. He would be the only disabled child at Northfield Elementary. The Gordons fought the decision. Attorneys were brought in, bitter words were exchanged, testimony was sharply divided.

County teachers who had worked with Travis in an early intervention program said he could write his name. The Gordons said he couldn't even hold a crayon without trying to eat it. Show us something he's written, they said.

"They held up a piece of paper with one letter over here and another over there," says Kathy Gordon. "It was ludicrous. They said he played with other children. That's just not true."

A judge at the Maryland Office of Administrative Hearings ruled on behalf of the county. Travis would have to attend Northfield. The Gordons have filed an appeal in U.S. District Court, that is pending.

After the original verdict, they kept Travis home and worked with him. After six weeks, they were criminally charged for not sending him to school. Prosecutors later dropped the charge. But the sense of endless nightmare has not gone away.

The Gordons began taking Travis three times a week to the Tutoring Connection in Towson. Then they enrolled him part-time at Kennedy Krieger. County approval is needed for full-time enrollment. Howard County officials continue to say no, to maintain that their programs meet Travis' needs. In the past two years, the Gordons say, the combination of medical care, therapy and legal fees has reached about $160,000.

Roger Gordon is a reconstructive surgeon. Kathy Gordon wrote a children's book called "Travis: I've Got Lots of Neat Stuff." The Muscular Dystrophy Association has printed half a million copies of it and made it into a video. All proceeds, the Gordons say, have gone to muscular dystrophy research.

Pub Date: 06/15/99

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