Never drowning in pity, he soars with pride

May 17, 2001|By Kevin Cowherd

IF YOU'RE looking for an inspirational story, it's hard to beat the one Marc DeSimone is living this spring.

Two days from now, DeSimone will climb the stage at the Baltimore Arena with 770 other young men and women during Loyola College's commencement exercises.

That he is only 19, and most of the other graduates 22, is remarkable in itself.

Now add the fact he was diagnosed with ataxic cerebral palsy, and probable mental retardation, before he was 2.

And that his parents were told by doctors to institutionalize him.

And that his mother, a Ph.D. now, gave up a promising career to work with the boy day and night and explore every therapy known to man that might help him. And that his dad, also a Ph.D., pushed relentlessly to have the rest of the world give the boy the same chances other kids had.

And that the boy himself, with the tremors in his hands and the speech impairment and the crash helmet on his head for all the falling down he did, might as well have had a sign on his back that said "I'm Different" - and yet from this drew motivation, not self-pity.

Now all these years later, here is Marc DeSimone, with a future so bright it could sear your eyes, getting his college degree and heading on to law school at an age when many of his peers have nothing more on their minds than: "Where's tonight's kegger?"

"Throughout his whole life, Marc has had to prove himself," his mother, Joan DeSimone, said the other day at the family's home in Towson. "Everything is a test.""[But] there's nothing Marc can't do," said his father, Marc DeSimone Sr. "There are certain limitations nature has put on him. But none he has put on himself."

Go back 17 years, though, and the world was not quite as sunny. When Marc Jr., the oldest of four children, kept falling and banging his head on the furniture at 18 months, they took him to the Kennedy Institute for tests.

Three days later, they sat at a table with a team of grim-faced doctors. Your son has ataxic cerebral palsy, the doctors said. A birth trauma had caused damage to the cerebellum, affecting his gross and fine motor skills. He's probably mentally retarded, too, the docs said. You should think about institutionalizing him.

As the DeSimones reeled from the news, a female apprentice social worker whispered to a colleague: "Notice the classical reaction. First, disbelief. Then, anger."

"If that was a man, I would have decked him," Marc Sr. recalled. Joan DeSimone just cried.

A pediatric neurologist they consulted for a second opinion confirmed ataxic cerebral palsy but said Marc. Jr. was "nowhere near retarded."

"This boy will never make his living with his hands," the neurologist said. "This boy will make his living with his mind."

Joan DeSimone quit a good job with the Howard County library and devoted herself to nurturing and educating Marc Jr. She read to him and showed him art books. She drilled him with flash cards. The family went to museums and art galleries. And to cover all the bases, they took him to the St. Jude Shrine on Paca Street and made a solemn novena.

From the beginning, there were signs that, far from being retarded, Marc Jr. might be unusually gifted. At 2, he visited the National Gallery of Art in Washington with his family, gazed at a painting and said: "Oh, look! Little girl with the watering can! Renoir!"

At 3, he was reading at a second-grade level. Soon, his mother had him taking piano and violin lessons to loosen the tightness in his hands. He received physical therapy and speech therapy.

At age 5, his IQ in five of eight areas tested off the scale. In the other three areas, involving motor skills, he still tested superior. "We're not dealing with a learning disability here," said the educational psychologist who performed the tests. "Quite the opposite."

Marc Jr. spent his early years in and out of public schools, with varying degrees of success. Many of his teachers didn't know how to deal with his disability.

Because of his shaking hands, he couldn't write, although he could use a keyboard. But the teachers found his clunky laptop disruptive. And he still recalls the third-grade teacher who wouldn't allow him to go out for recess until he could write his assignments legibly.

His mother home-schooled him in fifth and sixth grades, when teasing from classmates and barriers teachers threw up became too much. He soaked up knowledge like a sponge and skipped seventh grade. But his parents' attempts to get him into area private schools were repeatedly rebuffed.

Finally, they got him into eighth grade at a parochial school, Loyola Blakefield - his parents say Marc was the first student there with a severe documented disability - but not without a fight.

"You know the way boys are," the head of the middle school initially told Marc DeSimone Sr. "It's like `Lord of the Flies.' They're going to chew him up and spit him out."

Marc Sr. replied: "This is supposed to be a Catholic school. Do you think Christ would throw him out? Then give him a chance - for Christ's sake."

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