Local mother describes her family’s experiences with the disorderActions of a 2-year-old
Like most parents of autistic children, Possenti has spent countless hours and a multitude of dollars trying everything that might help Sammy — special restrictive diets, after-school therapists, visits to specialists, and two years of expensive speech therapy that weren’t covered by insurance.
So far, nothing has made much difference — for the past seven years, Sammy’s actions have remained those of a 2-year-old.
Today, Sammy is 9. He cannot talk or dress himself, and he is not potty-trained. When Possenti thinks he wants something, she asks him to show her on his Go Talk, a sort of talking picture board. Sometimes he uses it; sometimes he doesn’t.
Possenti glances at her son, who is smiling, as he always does, and staring vacantly, as children do when they’re day-dreaming. At the moment, the pacifier in his mouth is the only visual clue that something more than childish inattention is afoot.
“He does look perfectly normal,” Possenti says, admitting that on one level, she understands why a 9-year-old sucking a pacifier draws stares.
Still, she says, it hurts when people admonish her or make fun of Sammy.
“People think you can’t control your child,” she says, adding that stares, and worse, are standard fare in grocery stores, restaurants and even her own church. It’s not just the pacifier, she says; Sammy moves oddly, barely bending his knees, occasionally flailing his arms or making a sort of tuneless humming noise.
People poke fun at Sammy
When teenagers in the mall mimic Sammy, flapping their arms in exaggerated motions, she says she wonders whether it hurts him. And when she sees Jack, who is only 15 months younger than Sammy, maturing normally and interacting with others at a much higher level than Sammy, she wonders if Sammy knows what he’s missing.
“I feel very badly,” she says, “because Jack and Sammy are very close in age, and they should be the best of friends.”
Sometimes, Possenti says, she gets upset seeing media reports on autistic children who function well enough to play high school sports or take part in other normal activities. That, she said, is not the reality her family and an increasing number of households across the nation live with.
“There are 45 students at Sammy’s school,” she says. “Most of them look like Sammy.”
Everything is a learning process
With Sammy, Possenti says, “Everything has to be like a learning process.” But instead of mastering a concept and moving on, life with Sammy consists largely of repeating the same lessons over and over again. Getting him to sit at a table took months, she says, and they’ve spent years trying to get him potty-trained.
One of Possenti’s biggest concerns is safety.
“He has no concept of fear and danger,” she says.
When she’s cooking, Sammy might touch a burner or stick his hand in a pot of boiling water. He is very enthusiastic about lawn mowers, she says, and one time she found him across the street in a diaper and T-shirt, watching a neighbor mow.
Sammy also sleeps fitfully, and even locking his door after he’s in bed doesn’t always leave Possenti resting easy. After Sammy wandered out of the house one night, Possenti invested in door chimes.
Sammy spends every other weekend with his father, Possenti says, and she worries about him a little then and whenever she’s not with him: “I always worry what if, God forbid, something should happen to me, what would happen to Sammy.”
But she also worries about what will happen to Sammy when she is with him.
“You’ve got a 9-year-old that weighs 50 pounds,” she says. “He’s getting bigger every day, stronger every day.” She can still pick him up and carry him, if necessary — but how long will that last?
It helps, she says, that Sammy has a huge team of helpers. He attends the Vista School, where he works with a physical therapist, an occupational therapist, speech training pathologist and music therapist. There is approximately one aide for each of the six children in his class, she says, and teachers send home daily reports. Sammy also works with a therapist at home after school several times a week.
Still, she says, parenting Sammy is exhausting.
“There’s no real break,” she says. “You’re on 24/7.” And while ordinary toddlers eventually grow up and require less supervision, Possenti knows that Sammy might be like this the rest of his life.
Although autism support groups are available, Possenti says she’s not a fan of them.
“When I’m having a really bad day, it’s not always at 6:30 at the Y,” she says, explaining that she prefers to draw encouragement from her own network of family and friends.
“I think people really need to understand what autism is,” she says. “Once we get awareness, that leads to research, funding... maybe somebody will find something.”
For now, that’s the hope Possenti is clinging to: That one day someone will discover Sammy’s piece of the puzzle.