Explaining swine flu-related school closings to students with disabilities

From The New York Times:

When Public School 177 in Queens was shut down last week in the swine flu scare, Sharon Muncan was, of course, worried about whether her son John, a student there, had contracted the virus. But she had an even more immediate concern: What would she do with him while the school was closed?

Like many at the school, which serves nearly 500 special-needs students ages 5 to 21, John is autistic, and routine is paramount in his life. Before school vacations, Ms. Muncan starts prepping John weeks in advance, pointing to the days on the calendar so it makes sense to him when the holiday arrives. So when John, who is 19, learned he would not be attending his usual after-school program on Tuesday, “he had an outburst,” his mother said, “hitting himself in the head.”

“A lot of them do self-injurious behavior when they’re frustrated or upset,” she explained. By Wednesday afternoon, John was nervous and out of sorts. In the middle of playing his favorite Nascar video game, he suddenly started crying, tearing up tissues and saying, “no school, no school” over and over. “It was,” Ms. Muncan said, “like he started to think about, ‘Why am I sitting here playing video games?’ ”

By Saturday, the city’s department of health had confirmed five cases of the swine flu at P.S. 177, which is in Fresh Meadows, less than a mile from St. Francis Preparatory School, the epicenter of the flu outbreak in New York. City officials say nearly 1,000 students, staff and household members associated with St. Francis have reported flulike symptoms; at P.S. 177, the principal, Kathleen Posa, said about 80 people stayed home Tuesday, but only perhaps 15 with anything that looked like flu.

Ms. Posa said she spent last week fielding calls from parents who had as many questions about when the school would reopen as they did about the flu. (The school is tentatively scheduled to open Wednesday.) “All I can tell them is, ‘Hang in there,’ ” Ms. Posa said.

Finding a last-minute sitter is a challenge for any working parent; finding one for children with special needs is a near impossibility. Caroline Breuers, the president of P.S. 177’s Parent-Teacher Association, said she had heard that many of the respite workers who ordinarily assist families when school is out were reluctant to come last week.

When a child with special needs, like one with autism, does fall ill, that poses unique difficulties. Many of P.S. 177’s students are nonverbal, so teachers have learned to be resourceful if they sense someone’s behavior has taken a turn for the worse. A child who cannot say his stomach hurts might be able to point at a picture of a stomach. A child with a headache “might start banging his head, because he thinks that will make the pain go away,” Ms. Posa said.

Diagnoses can be a challenge: Good luck to doctors trying to get a throat culture from a child with severe sensory issues, like Regina Oldenburg’s 12-year-old son, who attends P.S. 177. Was it strep? Was it a virus? “You’ll never figure it out,” said Ms. Oldenburg. “It would be wonderful to know these things.”

Whereas a stomach virus is worrisome for any parent, it is twice as much of a concern for parents of children on regular medication. Tom Ryan, also a P.S. 177 parent, said that the last time his 15-year-old daughter, Katherine, had a stomach bug, she could not keep down her epilepsy medication and suffered a series of seizures.

EVEN with the additional burdens that the outbreak has presented, the parents of P.S. 177 remained even-keeled about the situation, joking easily with some ready gallows humor. Francine Spitaleri has been racing home from her job to relieve her husband from caring for their 16-year-old son, who has autism and pervasive developmental disorder; she said her son had taken the break in stride because he lacks the capacity to understand exactly what’s going on.

“He thinks he’s on vacation from the swine,” Ms. Spitaleri said with a laugh. “He’s just excited he keeps seeing his school on TV. He thinks it’s the greatest thing in the world.”

Ms. Breuers, the P.T.A. president, summed it up as “a lot of little things that add up to a big headache,” which many parents would surely perceive as understatement. Uncertain prognoses? Worrisome doctor visits? Unpredictability? By now, perhaps, many of the parents at P.S. 177 have got the uncontrollable under control, emotionally at least, a hard-won benefit of having a child whose developmental path meanders. Welcome to their world; maybe take a page from the grace with which they live in it.