Autism Swims
by Robert P. Barsanti
On a hot and steamy afternoon, there was a party at the Maddequet Admiralty club for someone who was 8 and for another someone who was 80. 8 had drawn a special t-shirt for himself that had the Admiralty porch with figures of himself and his grandfather. 80 was inside with one of his favorite Hawaiian shirts. 8 played baseball, ran for tag, and made new friends with each hit and swipe. 80 was inside with friends from childhood, work, his first and, now, his second family. Both had special cakes. Both had great times.
9 did not. 9 did not want to play baseball or run. He didn’t want to be inside. He didn’t want to eat. He didn’t want to meet the other kids or to play. At best, he would follow along after his younger brother and try to inveigle him into his fractured fairy tales and cracked cartoons. But mostly, he sat in the shade.
Autism is a long puzzle with no fixed solution. Rourke is not sick in the way that we think of sick; he doesn’t need a wheel chair, he hasn’t lost his hair to chemotherapy, and he has had no surgeries. From his relatives on the porch, he appears to be like his brother, albeit bigger and more quirky. But in 71 years, he won’t be greeting his friends and families on a hot August afternoon.
Autism creates an entangling slime world of seaweed, kept at bay by firm ritual and iron habits. Within a monastic structure, joy can leap. Without the structure, terror spirits him away. He eats the same foods every day, wears the same clothes, and listens to the same songs. But truck sounds, shirt labels, wet clothes, buttons, and zippers and a whole host of irritants vex him to madness. With all its voices and demands, the challenges of a third grade classroom confound him. In his best hours, he can chat and laugh. In his worst hours, however, his classmates are trying to shoot him, the nurse is trying to poison him, and the classroom is a torture chamber. I have stood flustered and bewildered beside a big boy as he leapt and beat his thighs in roaring anger at a milk carton. To him, Autism doesn’t speak, it screams.
As an infant, he would stand in his crib and bounce for hours at a time. He had yet to escape and prowl his bedroom, instead, he pogoed relentlessly within the white slats. On his first birthday, I place a tired boy in his crib and left him to his sleep. But from out on the front lawn, we could look up into the second floor window and see him joyously bouncing. Then he would disappear for a minute and we would all think him asleep, when he would reappear in mid-air. It is how he is; intermittent, happy, and distant.
For the moment, Sesachacha Pond solves his puzzle. It has no kelp, no big waves, no scary sand fleas, and a good smooth bottom where he can stand. He and his brother run down the sand path to the beach, kick their shoes off and wade right in. To Rourke, in particular, water gives one great, shuddering shock that sends him leaping and splashing until his legs are sore. Our games involve swimming, throwing, or riding Papa’s shoulders until he leaps off. After several hours of riding, being tossed, and hosting the other children, Rourke will float on the water with only his father’s hand and the love of salt water to support him.
One afternoon while his brother was at camp, Rourke and I went to the pond. As has been this summer’s inconvenient truth, the sky held murk and mist. We parked in a light drizzle and walked up the path in a gathering shower. Unconcerned at trivialities, Rourke ran into the shallows and began his ecstatic leaping. And so we stayed, in the rain and in the pond, swimming, jumping, and tossing until the fuel ran out and he lay on his back, rain beading on his face. It was a good day.
Most days are not. Most days have seaweed rolling in the wave or little plugs of moss and mud floating parenthetically in the pond. The milk is in the wrong container, the Cheerios are stale, the strawberries froze in the refrigerator, and someone is trying to murder him. I do what a Dad can. I carry him over the muddy shore, soothe the wounded soul and, at the last, buy him a pizza. At its essence, fatherhood is about keeping the seaweed away and I do my best.
But fatherhood is also about slowly saying goodbye. For this moment, he remains Prince of the apple towns and Lord of the Lego people, but this moment is fading into September. More seaweed lurks in the tides and currents of this year, next, and the decade after it. And his Papa may not find that seaweed as easy to toss has long strands of kelp. His work will end, just like everyone else’s. By the time Rourke is 80, his papa will have long since drifted off on the tide.
So that is why I am walking this weekend for Autism Speaks. I don’t look for a cure or a treatment, I look for a party. I look for a day. 71 years in the future when he can sit on the Admiralty porch with friends and family, wear his comfortable Hawaiian shirt, and watch the 8 year old grandson run the bases. I walk for a day with no seaweed.
