Monday, June 29, 2009

A son with autism gains skills to make his way in the world with a bit more independence

From The New York Times:

FREEPORT, N.Y. -- The invitation for Dan Mulvaney’s graduation Sunday showed a burly young man with a hipster’s goatee wearing a graduation cap (courtesy of Photoshop) and holding a real striped bass he caught in the bay behind Long Beach High School (pictured).

It read: “ ’Twas said that by teaching a man to fish you feed him for a lifetime.

“Dan Mulvaney has learned to fish, learned to cook and accomplished many things. Dan is ready to take on the world. Join us in celebration of his graduation, with honor, from Long Beach High School.”

It concluded: “Casual cuisine, beach-friendly dress code, indescribable pride.”

You could sense that indescribable pride Friday as his father, Jim Mulvaney, watched his son at work at the recreation center in this Long Island suburb just across the bay from their home.

After all, Dan holds down two jobs, at the recreation center here and the Lakewood Stables in West Hempstead. He’s getting ready to move into a house with three friends. He cooks — mostly pasta — and picks up after himself and does his chores at home better than most of his peers. His mother, Barbara Fischkin, says when they walk on the boardwalk in this unpretentious seaside town, more people greet him than her. Dan often accompanies his father to a local bar like Geri’s or John Henry’s, nursing a Sprite and picking the olive out of his father’s martini.

At 21, he has even managed to learn to say a few words — hi, mom, dad, more, food, bathroom and a few others. He may indeed be ready to take on the world, but at the very low end of the autism developmental scale, he’ll take it on with very limited tools. He’ll almost certainly need a full-time caregiver for the rest of his life.

Every graduation has its own history and conflicting story lines — pride, nostalgia, joy, achievement, regret, separation. It’s hard to know who’s in for more change and who’s better prepared for it, the graduate or the parents.

But this is a graduation that seemed unlikely to happen, so you can multiply all the emotions by 2, 3 or 10. Dan seemed on a normal developmental track for his first three and a half years until things went haywire. His speech suddenly stopped. He sat in a corner gnawing on his shirt. His parents first thought it would pass, then that it was a hearing issue, and finally the cold, terrifying diagnosis came.

In the early years, the school district had no idea what to do with him and said he was better off at home or a “special school.”

As a middle school student he was isolated from other children and placed in the corner of a foyer where the solution was to let him bounce on a trampoline, ride an exercise bike and nap as frequently as possible. His parents were told that at least one teacher referred to him as “an animal” from whom other students needed protection.

The school district insisted that Dan be sent to an institutional setting, an idea his parents balked at even before a state official had warned them that a school recommended by the district had problems with pedophilia.

And for all the expense and havoc, the $50,000 yearly baby-sitting bills, the disruption he created to careers and relationships, they didn’t want their son in an institution. They wanted him in a local school and in his own house.

“Parenthood is not something you can abdicate,” Mr. Mulvaney said. “No one is going to look after your child better than you, especially a hard child.”

SO instead, with the assistance of the district’s head of special education, Mary Tatem, they pushed and prodded, became total pests, made themselves and the district crazy but ended up with the best education Dan could hope for, one where he ate with other kids and became part of their world — good for him, good for them. And along the way Long Beach transformed itself from a district that barely knew how to deal with special-needs kids into one of the best in the region.

None of it is perfect. How could it be? But Sunday, Dan was coaxed into putting on his graduation gown and, after halting for a moment as if pleased and surprised by the enormous burst of applause, received his diploma. About 60 people came to his house to celebrate — parents, teachers, advocates for the autistic, his pediatrician, the friends who greet him on the boardwalk.

On Monday, he goes off to a summer camp, and then he’ll begin his new life at a group home. And he and his parents, like so many this time of year, will start anew with both a new set of possibilities and unalterable ties to the life they’ve somehow suddenly, miraculously outgrown.