When Swine Flu Closes the School

Cough.

Sneeze.

Sniffle.

These are sounds of a cold---sounds no one is glad to hear themselves making. When I hear Charlie making these sounds, and rubbing away at his nose, and sniffling, and realize he's not talking as much as he usually does---worry sets in. Charlie's not able to verbalize how he's feeling so it's pretty much a guessing game for Jim and me about what he might have. More often than not, we find ourselves calling the pediatrician's office; as Charlie's been going there for many years, they always give us a same-day appointment and a sympathetic ear.

Once we've started to figure out what might be ailing Charlie (who actually had a cold/allergy thing this past weekend---slept past 2pm on Saturday), Jim and I have been faced with another quandary: Who's going to take off from work and stay home? While we try to set up our teaching and work schedules so someone can always be home, unexpected meetings, appointments, and other obligations always arise and (as our only babysitters--my parents---live 3000 miles away in California and Charlie's not going to time when he gets sick to their visits, as if he should!), and one of us inevitably has to cancel classes/meetings/etc..

So I've been commiserating in buckets with the parents of students at Public School 177 in Queens which, as reported in today's New York Times, has been shut down last week after some five cases of H1N1 aka swine flu were reported. Some 500 of PS 177's students are in special education:

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.”

Actually, Charlie has had a throat culture taken (for strep; came back negative). Yes, my son does bang his head and we have connected this to him having various pains in various other parts of his body and trying (we think) to signal this to us----we're always wary of making generalizations about this kind of thing.

One thing we can agree with: Life raising a child with a disability does mean that, as a parent, you get used to the unexpected falling into your lap. And, due to the pervasive lack of sitters (and teachers, therapists, etc., etc.) for kids "who need more," you are already used to having to drop everything and head home to take care of your child.

And, while it can make things a bit complicated at work, we're always glad for extra time with Charlie.