Don’t be fooled by the sweet, innocent face on the cover of Nola Baby & Family magazine’s April issue. I know that face well. It is the face of my son, Sam.
It is the face of a rascal.
In the photo, his knees are pressed together primly. His shirt is clean, as are his hands. He was, at the moment the image was snapped, posing as directed.
None of which is normal for him.
He is, in many ways, our easiest child. He is sick far less than either of his sisters. And he is far less dramatic.
However, mischief is his middle name. Allison, our regular babysitter, warned her friend Emily, “Sam knows how cute he is, and he’s not afraid to use it against you.”
He didn’t get the call to be on the cover of Nola Baby & Family, a free glossy parenting magazine distributed throughout the New Orleans area, just by being cute. The April issue introduces Nola Baby’s new, recurring series of articles for parents of kids with special needs.
Sam has Down syndrome. He was born with the usual number of fingers and toes, but an unusual number of chromosomes. That qualified him to be the magazine’s first special needs cover model.
Getting the invitation to be on that particular cover was a reminder that technically — or chromosomally — speaking, Sam is not “typical.” Intellectually, I know he has Down syndrome. But we’ve never let that define him. Neither has he.
At school, he is mainstreamed in a classroom with mostly “typical” kindergarten kids. Another boy in the class has a form of autism, and requires a full-time helper. Sam doesn’t. He is, in most academic areas, keeping up with his peers. His receptive language skills are fine. He knows the alphabet, can count and write his name. His speech is still a work in progress. It is … efficient. He cuts out prepositions, conjunctions and adjectives in favor of the core nouns, verbs and needs.
“So kind,” he’ll say, by way of thanks. Or, grandly, “Thank you, Madame.”
Has he been reading Jane Austen novels in his spare time?
Both at school and at home, he knows the rules, though sometimes elects not to follow them. Setting out with his kindergarten class for a field trip recently, his teacher instructed the kids to keep all body parts inside the bus. Twenty seconds later, Sam’s head was poking out a window.
Like his classmates, his daily behavior is graded on a color chart. Months into the semester, he came home and proudly announced he was on “purple” — the best possible color.
Up until that point, my wife and I didn’t realize purple was even a possibility. We’d never seen it before.
In his defense, he is mostly graded “green,” which is good. Sometimes he gets “yellow,” which indicates a mixed bag of behavior. Occasionally, he manages a red, meaning the day went awry.
In kindergarten, the “red” issues aren’t terribly serious. Sam’s most recent red involved an unauthorized trip to the water fountain down the hall. He asked to go. His teacher told him to wait until after the math lesson. She turned away, then looked back to see him scooping up the hall pass and heading out the door.
At least he got the pass.
Getting Sam dressed for school recently, I told him he must return a “Cars”-themed snack container he purloined from a classmate: “It’s not yours. It doesn’t have your name on it.”
He turned around, walked out of the bedroom and locked the door behind him. I found him in the kitchen, writing his name on the container. He spelled it out for me, just in case I couldn’t read: “S-A-M.”
At home, we stashed the supply of Easter candy high on a rack of shelves. Sam climbed the shelves like a ladder to help himself.
He often wakes up before anyone else, comes downstairs, puts a show on TV, and raids the freezer for breakfast. Maybe it’s waffles. Maybe it’s ice cream.
Usually he and I are cool. Occasionally we are not. “Go away,” he said to me as I tried to put him in the bath one night.
That’s not very nice, Sam.
“Go away, please.”
When he missed a day of school, a teacher texted that it “wasn’t the same without him.” Noticeably, she didn’t specify better or worse. Less lively, for sure.
Sam loves to explore, and doesn’t necessarily share his plans with adults. Early in the school year, he quietly disappeared from the back of the line as a substitute teacher led his class to the after-school pick-up area. Several panicked minutes later, he was discovered back in his classroom, to which he’d returned to take an impromptu nap.
A “Sam protocol” was subsequently established for the end of the day, to prevent unauthorized wandering.
Half the members of his class showed up for his sixth birthday party at City Park’s Storyland. At cake time, he and I were the last to arrive back at the table. The rest of the kids were chanting, “We want Sam! We want Sam!”
When he enters his classroom, he invariably strikes an Elvis-like pose, eyes closed, arm thrust out, knees bent. It kills, and he knows it. Classmates mob him with hugs.
He is accepted by them without question — or definition.
Sophie, his 8-year-old sister, asked recently, “Sam is special needs because he takes medicine every night?”
Not exactly. It’s more complicated than that.
Or maybe it isn’t.
Staff writer Keith Spera chronicles his parenting adventures in the occasional ‘Parental Advisory’ column. Follow him on Twitter, @KeithSpera.