Autism not a barrier to Piccarreto’s graduation
Sixteen years after learning her son James has autism, Carla Piccarreto can finally cry.
Piccarreto, of Greece, said she took the news dry-eyed when her son was diagnosed at age 2. Doctors told her then that her boy would probably never speak, never bond with her and likely couldn’t even be educated.
“I sat there in the doctor’s office and said to myself ‘I’m not buying this,’” said Piccarreto. “My family said ‘she’s in denial, she’s not crying.’ But my attitude was ‘what’s next?’ and ‘what can I do?’ I knew I saw a spark somewhere in his eyes, and I told myself I’ll cry when he graduates, and that’s been my mantra.”
Friday night as his mom, her fiancée Stephen Colangelo, his younger brothers, grandmother, dad Thomas Passamonte and longtime one-on-one aide Chris Schenk watched, 18-year-old James Piccarreto donned his black cap and gown and crossed the Athena Performing Arts Center stage with about 100 other graduates from Greece Odyssey Academy.
But while his graduation is a major cause for celebration, it is also a cause for anxiety. By picking up his hard-earned local diploma, James begins a new and perhaps more daunting challenge shared by the hundreds of thousands of the nation’s other young people also on the autism spectrum: becoming an independent adult in a world built by people whose brains don’t work the same way theirs do.
“There are still a lot of gaps for him, areas where his skills aren’t that strong,” said Carla Piccarreto. “We’re really stepping into unfamiliar territory.”
Still, James has big plans for his future.
“Now I have to learn how I’m going to succeed,” he said. “I’m 18 and going through transitions now. When I’m 21, maybe I’ll be ready with more skills. In my mid-20s maybe, or my 30s, I’d like to date and have a wife if possible and if I do, I’d like to have a child I’d name it Carly Lois Piccarreto or Thomas Steven Piccarreto or maybe Jeff just for fun.”
Fierce advocate
At nearly 6 feet tall, James is bulky and strong. To look at him, no one would know how desperately he needs routine and consistency, needs to be shown how to do something, sometimes over and over, before it sinks in. He doesn’t read verbal cues well, doesn’t catch on to sarcasm and has a hard time understanding how to interact with other people, especially kids his age. He sometimes fixates on time, or gets so caught up in telling a story that he won’t stop no matter how much others try to interject. A few tics, like touching his face, still show up when he gets nervous, anxious or frustrated.
When James was diagnosed, Carla devoted her time to researching the most current and effective therapies for children with autism.
She worked tirelessly with him at home. When James couldn’t speak, she learned sign language and demanded he communicate by bringing her a picture of whatever it was he wanted. She let him know his boundaries while playing outside by drawing traffic signs on the sidewalk with chalk. She labeled nearly every item in the house with its name, turned lessons into repetitive songs and trained and hired high-school kids to come to her house and work with James using techniques she’d picked up at conferences or from researchers.
When James went to school, Carla became a staunch advocate for her son. She battled for a one-on-one aide, for different methods of teaching that she felt would be more successful, for various behavioral therapies. She documented his every gain, his every loss, and honed her advocacy skills so she could help other parents navigate the bureaucracy of educating a special-needs child.
“When I look at my son, I know I wasn’t fighting with the schools just to fight,” she said. “I fought because I knew that everything I was asking for would benefit him.”
A big year
This has already been a big year for James. He’s gone to his prom, took and failed his first driver’s test, and had the biggest thrill of his life: meeting champion race car driver Jeff Gordon at this year’s Daytona 500. Since James is a big fan of stock cars, Carla has taken him to a major race every year he’s been in school as a reward for doing well. They saved NASCAR’s biggest race for the year he would graduate.
As in most areas of their lives, Carla’s persistence again paid off. A letter she wrote to the president of the Daytona International Speedway netted them pit passes that allowed her and James to get close to their favorite drivers.
“All of a sudden it’s 1:30 or 1:45, before the race, and here come Jeff Gordon with all of these fans and he’s signing autographs,” said James. “So as he comes closer, Mom gets her camera ready and jumps right in front of him. I hug him and say ‘It’s you, it’s you’ and Mom gets ready to take the picture … and her batteries died.”
They didn’t get their picture of Gordon then, but a few minutes later they had another chance when they got near Gordon and his pit crew.
“Jeff goes to her, ‘Did you finally learn to work that thing?’” said James, adding that Gordon is his mom’s favorite driver, too. “She couldn’t even barely talk when we were there. She just couldn’t, but I was more relaxed.”
Carla laughed.
“The irony is that the little boy they all said wouldn’t talk turned to me as we left there and said ‘Mom, what happened to you in there? Why couldn’t you talk?’” she said.
James’ knowledge of NASCAR is stunning. Ask him about almost any race in the 61-year history and he’ll give you a lap-by-lap recap. His dream is to become an announcer for NASCAR and he has taken broadcasting and communications classes in school. He’d like to study communications in college.
Blazing trails
According to the Autism Research Institute, the number of children diagnosed with autism has skyrocketed from a pre-1990 five children per 10,000 live births to 2007’s rate of nearly 1 in 150 children. Boys with the disorder outnumber girls four to one.
In coming years, there will be many more young people like James finishing high school and heading out into the world of college and work, marriage and adulthood.
“We hope we are trailblazers,” said Carla Piccarreto of her work getting James the help he needed — and was entitled to by law — in school. “I’ve always said we were blazing a trail, pioneers. We were big proponents of developing a lot of the autism programs and specialists they now have in Greece.”
She hopes her efforts will have a lasting impact.
“But I know how quickly doors can shut behind you,” she said.
Now that high school is done, James will have to start fighting for himself.
“The major difference after high school is that you have to ask for the services,” said Colin Garwood, executive director of LDA Life and Learning Services of Rochester, an agency that assists children with learning disabilities and their parents. “You have to let (colleges or employers) know that you’ve got a disability and you’ve got to be able to document that. Once you let them know, they are required to give accommodations if your documentation qualifies you for that.”
Already, Carla and James have arranged for help with driving skills from Rochester Rehabilitation Center. He has a driver’s test coming up in July.
They’re also working with Lifetime Assistance and other agencies to get James help with such skills as budgeting, interviewing, shopping, cooking and communicating with bosses.
Although he hoped earlier for a full college schedule after high school, James has decided that would be too stressful.
Still, he’s going to take at least one, if not two courses at Monroe Community College in the fall.
But for now, he’s still got graduation and his upcoming party on his mind.
“I’m going to have to figure out what to do with all my graduation gifts, stuff, whatever I get coming up,” he said. “I’m probably going to have to get a bigger memory box just to throw all my graduation stuff in … probably buy more Kleenexes for my Mom.”
MCDERMOT@DemocratandChronicle.com
