Getting So Close – Autism Speaks

~ by Robert P. Barsanti ~

I am trying to get my son to shave.

Ever since he was in seventh grade, he has grown a phenomenal beard; a dense thicket of wiry red bristles. After eight hours, a shadow appears. In two days, a low growth spreads across his jawline and chin. Five days in, the hair is too long for shaving by conventional means. At this point, I take a clipper to cut the tough stuff down to stubble, then shave him twice with a razor. Then I hope for a return to a hairless childhood.

Because my son is autistic, it is difficult to teach him to do this on his own. His beard doesn’t bother him. Because my son is autistic, he spends most of his weeks at school in central Massachusetts where they do their best, but can’t quite get it together to watch him shave once a day. Because my son is autistic, they can’t just point him to a bathroom with a can of Barbasol and a disposable Bic. I get him an electric razor with floating heads and funny buzzing sound, and I push for them to get him to shave. Sometimes they do.

More often than not, I pick him up on Friday and he has two weeks worth of heavy red beard over his jaw and a smile on his face. I leave a Hershey bar in the back seat and it is gone before we get out of the parking lot. He calls his mother. I have downloaded the latest superhero movie onto my iPad and he settles into that while head south on 495, cross the bridge, creep up Route 6 with the lawyers, doctors, and creatives, before three pieces of pizza and three milks at the mall, then the boat ride back to the island. He is nearly six feet tall and two hundred pounds of bearded man who will pace the deck in two/four time.

We have routines and habits. He gets Downyflake Donuts on Saturday morning and Sophie T’s Pizza on Saturday night. In the summer, we go to the beach so he can get battered by the waves. In the winter, we go to the pool. He stops by his mother’s shop for a roll and a Nectars lemonade. I subject him to a shearing and a shave. Then, on Sunday, we go to the Toy Boat to say “hello” to Lauren and to look at the Legos; she writes him a post card every week. And then we go back to school.

This fall will be his fifth at the school. He is at the age when my students have visited a college or two and have started to think about where they would like to go and what they would like to be. They are getting ready for a soccer season when the scouts will come to see them. They are finishing up their first summer job. They have broken their first hearts. They are taking their driver’s tests. The kids who were in his play group and his elementary school classes are now walking into my classroom. They have Thoreau, Twain, and Melville lined up and ready for them. Rourke will not be in my classroom.

There are times when I think he could be. As long as he can listen to the works, he can keep up with any book he reads. His school leads him through most of the same books that he would be lead through on-island. He can type and he has, with help, written stories and essays. And then, I remember his beard.

The great frustration of having a child with autism rises from that hitch. I spend enough time around him to know that somewhere deep inside his skull, there is combustion. You can hear the engine hum, but somehow, the gears can never quite mesh. He knows more about the Civil Rights fights of the fifties, sixties, and seventies than any of my current students. He can recite chapter and verse on the Marvel Superheroes, Greek Gods, and South Park episodes, but somehow he can’t put that knowledge to work for him. As a parent, you see how it is just one thing missing. You see how tantalizingly close it is for him to put the clutch in and engage the gears. All it would take is one teacher, one therapy, one drug and…

My son does not want to make the varsity or make it into Harvard. He wants to go to Comic Con. He has given me a list of the costumes he wants to wear to Comic Con for the next twenty-five years. He wants to be Green Lantern, FDR, and Apollo. This year, he went as the Flash—the original Flash with a red shirt (lightning bolt) blue shorts, and a metal mixing bowl for a helmet. I made him promise not to run through anyone. Somewhat shaved, and entirely happy, he went bopping through the convention space filled with five thousand other characters. Someone called Flash and high-fived him. He climbed the air.

As always happens, we got separated. I waited at our rally point until it became painfully clear that he had completely forgotten about me and was rocking out to his own private Eddie Van Halen. Had he been someone else, I might have feared he was outside shooting up, or he had run off to a bar or a girl or a gang, or he had been led into a panel truck. In a thousand common ways, it might have been otherwise. But he remained in his own elliptical orbit in this strange galaxy. I found him by his metal helmet in front of the Thanos cardboard cutouts: “Oh, there you are, Dad.”

Today, I am here and he is happy. There will be more pizza and more swimming and more weekends on Nantucket. But his beard will continue to grow and there will be a time when I won’t be there to trim it. So, that is why I walk.

[Editor’s Note: Many islanders will join Robert for the Autism Speaks Walk on Nantucket this Saturday, August 20. Autism Speaks is the world’s leading autism science and advocacy organization. It is dedicated to funding research into the causes, prevention, treatments, and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families. Since its inception in 2005, Autism Speaks has committed more than $570 million to its mission, the majority in science and medical research. Each year, Walk Now for Autism Speaks events are held in nearly 100 cities across North America. To donate to the Nantucket Walk, join them at Jetties Beach at 8:30 am this Saturday.]