Monday, May 09, 2005
A league of their own
Today’s item is about baseball and drooling. We begin with this recent item by Jonathan Finer in the April 29 Washington Post:
BOSTON—When the technician examining an ultrasound image of her belly abruptly got up and walked out of the room during a prenatal appointment six years ago, Beth Allard told her husband she knew something was wrong.
Minutes later, an obstetrician at the Boston hospital confirmed the first-time mother’s fears, explaining that the pictures showed signs of Down syndrome.
Then, Allard recalled, the doctor began to describe what to expect.
“It could just be hanging off of you, drooling,” the physician said, contorting her face into a saggy, expressionless imitation of what a child might look like with the constellation of physical and mental symptoms that characterize the syndrome, which occurs in about one in 1,000 newborns.
“We felt hopeless and incredibly scared,” Allard, 42, said in an interview. “We didn’t know what this was or what to do. They told us we had a few weeks to decide whether to keep the baby.”
Such negative depictions of Down syndrome by health professionals who do prenatal screening are common, according to a survey of nearly 3,000 parents of children with the condition, published last month in the American Journal of Obstetrics and Gynecology. A majority reported that the obstetricians who gave them the diagnosis had focused on the hardships ahead and ignored “the positive potential of people with Down syndrome.”
“In many cases the doctors were insensitive or just plain rude,” said the author, Harvard medical student Brian G. Skotko, whose 24-year-old sister has Down syndrome.
Parents and advocates of people with Down syndrome hailed Skotko’s research and hope it will lead doctors to provide more comprehensive information about what life with the condition can be like.
Of course, doctors will have to read the damn thing. They can’t just hang around hospitals drooling and making funny faces all day.
Just over thirty years ago, Charles and Emily Perl Kingsley were told that their baby Jason “would probably never sit up, stand, walk, talk, or have any meaningful thoughts whatsoever,” as Ms. Kingsley recalled many years later. “He would never recognize us as his parents. He would never be able to distinguish us from any other adults who were halfway nice to him.” Her husband responded with what is now a classic line among parents of kids with Down syndrome, “Okay, maybe my son will never grow up to be a brain surgeon. Maybe all he’ll ever be is an obstetrician.”
Jason Kingsley grew up to be, among other things, the co-author of the 1994 book Count Us In: Growing Up with Down Syndrome.
In all fairness, not every child with Down syndrome will grow up to write a book, part of which contains a belated reply to his family’s obstetrician—and all of which, of course, constitutes a reply to his family’s obstetrician. Some children with Down syndrome might, for example, merely throw out the first pitch of the 2005 State College Little League season:
Jamie was really looking forward to this, so we practiced his pitching all last week. He’s got a great arm. And here’s Jamie taking a little BP beforehand. Yep, he throws right, bats left. Don’t ask me—that’s his mother’s influence.
Jamie plays “Challenger League” baseball on Fridays from 6-7 pm in May and June. The two teams in the Challenger League play two-inning games in which every player bats once each inning. They are assisted each week by “buddies” from other Little League teams, who help them with fielding (thanks, buddies!). Each batter takes first base, regardless of what happens in the field, and then the last batter in the inning effectively hits a grand slam, clearing the bases. So all the kids bat; I pitch underhand to all of them except one, a serious ballplayer who can handle overhand pitching and hit it sharply into the outfield (Jamie’s almost there, but not quite—he can smack it, usually to the opposite field, but I haven’t thrown overhand to him yet). All the kids get on base. All the kids score. There are no vicious parent-umpire fights; there are no umpires. There are no parent-coach squabbles about whose kid should be playing where. There are no wins or losses. Imagine, no wins and losses. Imagine no possessions! I wonder if you can.
Of course, some people would say that Challenger League isn’t really Little League at all—just a feelgood exercise stripped of all the forms of competition and athletic achievement that make youth sports meaningful. These would be the people who don’t see why it’s worth the effort to include kids with disabilities in all forms of social life, from school to play.
But Challenger League rules. Those people drool.