Autism Vox

Charlie on the Hudson

by Kristina Chew, PhD on May 25th, 2008

We were walking down the West Side Highway in Manhattan on Saturday when Charlie started running and laughing. Jim and I saw that we were nearing the shed where you can take out a kayak into the Hudson River—-we had passed the shed back in April and met a retired longshoreman who’d noted how he likes to be near the water, and exchanged stories of the waterfront and Cockeye Dunn, a New York mobster who’s one of the characters in the book about the port of New York and New Jersey and the Waterfront priest that Jim is very, very close to finishing.

“Want a kayak ride?” asked Jim.

“Yes!” said Charlie. He paced back and forth pier 96 with the river splashing below him as Jim filled out some forms and I coaxed Charlie to put on a life vest. “No vest,” said Charlie and the straps got all twisted up. A volunteer appeared and matter-of-factly rearranged the vest around Charlie and pulled the straps tight, and then Charlie proceeded down the ramp where Jim was standing by a kayak. Charlie was sounding anxious as he stepped onto the boat and then he and Jim were heading out towards Jersey on the Hudson, Charlie sitting in front of Jim as he paddled.

“Are you sure they shouldn’t be in a two-seater?” a woman whose voice said she was in charge said to the man who’d helped Jim and Charlie onto the canoe. “I wouldn’t put that kid in a two-seater,” was the response. The woman pointed out that she thought it would be kind of hard for Jim to paddle as he and Charlie were sitting in a space meant for one person. The man just shook his head.

“He’s very nervous,” the woman observed to me (Charlie’s verbalizing could clearly be heard).

“Yeah, it’s something new.” I started to mention autism whereupon the woman said,

“I don’t like to put labels on anyone. He’s nervous.” She paused and added, “My nephew has Asperger’s.”

“How old is he?” I asked.

“Eleven,” she said, and went to work on one of the kayaks.

From having seen Jim teach Charlie to ride bikes on busy streets, to stop at intersections, and to walk the bike up steep hills, I figured that Jim would manage fine. I could see Charlie leaning back on Jim and sensed the smile pulling on the corners of his mouth, and Jim paddling regularly. It was windy and the water was active: Charlie for sure likes to be near the water, and here he was afloat on it, out on the Hudson. When they got back to the pier, Charlie ran up the step and to the top of the ramp, every part of his body seeming to tingle with joy. We started walking again at a fast pace towards the New York Waterways ferry slip on 38th street, Jim and Charlie with half-wet pants.

The kayak ride on the Hudson made it a day when we traveled by car, by train and subway and PATH train (to get into NYC from Jersey), and on foot up 8th Avenue to Columbus Circle. Ok, I didn’t get in the kayak (someone has to take the photos) but we all did ride a ferry to Hoboken and then walked on the other side of the Hudson to Washington Street and a restaurant where Charlie got a very nice hamburger and French fries, and lots of ketchup.

Then, as we stood in the hot a stuffy PATH station in Hoboken, the loudspeaker blared that trains betwee 33rd Street and Journal Square in Jersey City would be delayed by some 10 minutes “due to signal problems.” Consequently, we missed our train out of Newark and had to sit in the waiting room for almost an hour. I got Charlie and Jim sodas and we sat across from a man in a navy blue uniform and work shoes who was eating large bits of sandwich from a bag and reading the newspaper, and an older woman with a wool hat pulled far over her head and three lumpy-stuffed bags around her. Charlie was glad to be sitting and sipped his Sprite and looked around.

I was able to read some of a book, Families of Adults with Autism: Stories and Advice for the Next Generation. It’s just out from Jessica Kingsley Publishers, which publishes many books about autism, and is edited by Jane Johnson (the director of Defeat Autism Now! (DAN!) and Anne Van Rensselaer. The book was originally envisioned by the late Dr. Bernard Rimland and Stephen M. Edelson, Ph.D.. It’s mostly a collection of stories by parents of autistic adults (many are 40-50 years old) and a few by siblings. Rimland’s daughter, Helen Landalf, writes about growing up with her brother Mark; the contributions I liked best are by Clara Claiborne Park (who has written two books about her daughter, Jessy) and Audrey Flack (who is profiled in the film, Refrigerator Mothers). Some of the stories have some painful stuff in them—sexual abuse, self-injurious behavior (some families used “skin-stimulus therapy” of the sort used by the Judge Rotenberg Center), group homes where an autistic person’s dearest possessions (a deceased parent’s shirt) all disappeared. I got a sense of many fewer options than are available to autistic individuals today, and of parents being very much on their own not only to get therapies but to figure out what to do.

And I closed the book and rubbed Charlie’s back, up and down his spine, deep enough. We’ve traveled far with Charlie and I know we’re still at the beginning of a long, long road, in a world that is not at all sure of what his place in it should be.

But we do know how Charlie likes, loves, needs to be near the water, and how it was he himself who ran ahead of us on Saturday afternoon, to show us where to go.

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POSTED IN: Adulthood, Books, Charlisms, Family, History, New Jersey, Parenting, Water, new york