Embracing Chaos
An Inflatable Whale, an Autistic Boy and A Family's Lesson in Frustration -- and Laughter

By Wystan Gladish Simons
Special to The Washington Post
Monday, July 21, 2008

Our youngest, 9-year-old Oskar, was the one who first figured out that the name of the whale was Chaos.

Much is written these days about autism and how it might be cured. Certainly, especially for those whose autism is profound, this hope for a cure is vital. Still, there is something to be said for living with someone who has an altered perception of reality. We've had some experience with this in our family.

The whale in question, a large, inflatable orca, belonged to Oskar's older brother. Owen met his whale while we were vacationing in the mountains of Pennsylvania. There, on the upper ledge above the Shurfine Market's meat section, sat the whale.

Immediately attracted by it, Owen str-r-e-e-etched up to touch it.

"It's -- a -- whale," he said in his mechanical way. Owen has autism and doesn't access language easily, so this indicated a serious connection had been established.

I asked if he wanted me to buy the whale for him.

It's hard to know what kind of presents to get Owen. His fascinations run to the unusual -- currently ladles and cooking spoons, and we have plenty of those. A lake toy was a great idea for his August birthday, but I favored the green crocodile lolling up there beside the orca. The croc looked a lot easier to handle. I studied the inflatable animals dubiously.

Owen answered me with his whole body, skipping, then pirouetting in pure joy. "GET -- A -- WHALE!"

Back at home, during the weeks that followed, we all tried to keep the massive inflatable inflated. Thankfully, my husband is gifted with a particularly strong pair of lungs, but still it was an impossible task. The seven-foot whale went everywhere with Owen. Into the tub and into the bed. Across the lawn.

To the orthodontist.

Owen can be particularly unsettled in doctors' offices; he can't be still. That is why on an August morning I allowed the whale (dubbed Robert De Niro by Owen's sister, who has a flair for the dramatic) to be taken to the orthodontist's office as a bribe. It seemed a logical concession as we struggled to get Owen out the door.

Sitting in the doctor's office, however, trying to inflate the cetacean, I felt transported into a Monty Python skit. Surely any moment John Cleese would walk in the door. My daughter quirked an eyebrow at me, as my cheeks puffed out mid-blow, and we collapsed in uncontainable mirth. We imagined a series of YouTube episodes: large inflatable whale seen around Bowie. The opportunity to laugh uncontrollably with one's teenage daughter is the sort of gift that life with Owen brings.

How absurd, how absurdly delightful, to be drawn into Owen's world and yet still stand outside it, appreciating its contrast to the typical one. It's important to know that Owen laughs a lot himself. He seems in some way to understand how silly things are even when he is the one obsessively drawn to do them, such as collecting the flatware and putting it into the bed, the tub or the trash can. I am sure that I couldn't laugh if he didn't. I can't always laugh anyway. Plenty of the things he does just aren't funny.

Owen's job here on this planet seems to be all about getting into other people's space. In this country, we are very attached to the idea that we own things; property is a cornerstone of our value system. So, you think that house, that room, that shirt, that space around your body, is yours and yours alone? The autistic child has no such sensitivity. Try as we might to teach it, the idea does not register. Owen laughs. His point of view shocks and infuriates people, repeatedly, but it also offers them the opportunity to reexamine their values.

Sometimes that summer, Owen would ask in words to have his whale blown up. But his usual method was to put its limp form in our faces. We generally try to get him to use words, accepting whatever speech may come. This is why when we first heard Owen say "Ke-os" while holding up his whale, we thought he meant to say "kiss."

Then little brother Oskar clued us in. "He's calling his whale 'Chaos'!" he exclaimed in delighted disbelief. Owen had named his whale.

Eventually, Chaos the killer inflatable whale became impossibly full of holes. Somehow, even in his flattened state, he retained his persona. He was like a member of the family. At supper, he lay beside Owen's chair; he was dragged semi-inflated into the tub or the bed. "No, Chaos can't go with you on the bus," I had to insist more than once. Even deflated, the plastic whale was too big to take to school.

By October, the beloved Chaos was truly in a chaotic state. Owen began dismantling him, as he eventually does to most things he loves very much. One morning, to dissuade Owen from the metal spaghetti server I was sure wouldn't be allowed on the bus, I let him take a piece of the former plastic whale. It had Chaos's eye and the handle originally intended to hold a swimmer on his back. It was the last of him.

"I miss Chaos," my daughter remarked a bit sadly one day. I know what she means. Maybe we'll have to find another one.

On the other hand, perhaps Owen was trying to resolve the problem of his toy's fragility, its mortality, in his own way. The whale lay around the house in its deflated state for weeks. But reduced to pieces here and there, Chaos is easier to let go.

Mom can be a little slow, a little too attached to what is after all only a material possession.

Thanks, Owen.