"Mike Barney" said Charlie on Thursday morning, the day after his grandparents and several great-aunts and -uncles had spent the afternoon at the beach house with us. "Mike visited you here once, when you had Barney," I said. "But Mike can't come anymore." "Mike Barney head, hat," said Charlie, referring to how Mike had put Barney on his head at his last visit to the shore with us, to get a laugh out of Charlie. "Nott enny-more," Charlie added, looked away, ran off.
Mike was one of Jim's best, best friends; he died in January 2004 and is always missed, and even more when we are at the beach. Mike was an artist--a painter, a sculptor--and a musician; he was like a force of nature and he was edgy, invigorating, questioning, passionate. Six summers ago in 1999 we drove from St. Paul, Minnesota, to the Jersey shore with a just-diagnosed Charlie and the same Barney and "Celtic Tides" tapes playing the entire trip (or Charlie screamed). At the beach house, Charlie spent a lot of time running back and forth on the deck, gazing through the slats; he screamed so much when his godparents came to visit that they came out of the guest room with their bags and said they could not stay. Mike came at the end and watched Charlie building elaborate block structures that no one could move a piece of. "Hello, hello, is it for Charlie?" Mike said, pretending a block was a telephone; Charlie stared elsewhere. "Would you like a little pool in the sand? How about we build something?" Mike asked as he dug in the sand with his hands; I exclaimed over the result; Charlie's eyes wobbled.
Mike last visited us at the beach in the summer of 2002. He had been ill for several years and was thin and unable to work. He was determined to get Charlie to play with him and the two of them spent a happy afternoon, Charlie befuddled then grinning to see Barney riding on Mike's head, Charlie wearing Mike's straw hat, Charlie getting a piggy back on Mike's gnarled shoulders, the two of them (Mike later laughed to me on seeing a photo) ready to launch themselves into the sea. Mike told me how distraught he had been after he had visited in 1999, how he'd cried to his mother, "These are my friends, these are my friends whom I love and Charlie--to never have a child give back that, what Nicole and Augustus gave back to me----." Though worn and weary, Mike could not stop expressing his joy to have a connection with Charlie that afternoon in August of 2003. After Jim called me on the train on a freezing January evening in 2004 to tell me that Mike had died, I pulled out the photos of Mike and Charlie and Barney. Charlie often asks to see them on the computer at home; he regards them solemnly, then smiles, saying "Mike Barney head. Piggyback Mike! Ocean, beach house."
So, when Charlie asked to see "Mike Barney" on Thursday morning, I think he was thinking about the people who have visited us at the beach house, and how these are part of "the beach experience" for Charlie. I feel Mike's spirit everywhere here, as today when I dug my foot in the sand to make a little pool for Charlie, when Jim and I were watching Charlie in the sea grass in the dunes, when we talked about playing miniature golf, which we had both last done with Mike. "Mike's not coming, Charlie," I further explained, "but Hal is." "How movie," said Charlie and smiled. As we drove down to the beach last Saturday, Jim and I had been joking about seeing cousin Bob's movie when Hal visited and Charlie, attesting to the fact that he is always listening to every word, surprised us later that evening by announcing "How movie. Great job, Howie!" (All things considered, Charlie's a bit too young for this particular movie so I guess he and I will have to catch March of the Penguins.)
Tonight, while Jim and Hal caught the Phillies/Pirates game, Charlie hopped into the guest room and onto the bed, then ran out, rocked in a rocking chair smiling, and stretched out on the couch beside Hal, smiling. "Great job Howie!" "Hey Charlie," said Hal. "Annemarie!" said Charlie. "Charlie annn Thea Marilyn Flo! Kristy. Kristy house." "Who's Kristy?" asked Hal. "She was Charlie's first lead therapist, when he did the program in Minnesota," I explained. "You're on the list now too, Hal," said Jim.
When I started this blog I wrote that autism is like the beginning of a long-term--lifelong, really--loving relationship that is not at all what you expected, and more beautiful, and tough and heart-wrenching, than anything you might have imagined. The story of autism--the story of our life with Charlie, of Jim's and my life together as a family--is a love story. And, I would add, a detective story. Many of the accounts--David Kirby's Evidence of Harm book, for instance--have been written as such a "whodunit": Who put the mercury-based preservative thimerosal into the MMR vaccine? Why is it that a tiny infant is given so many shots in one day? Why can't he talk? Why does my child have autism? How did this happen? Those who have found connections are proclaimed the Sherlock Holmesian heroes of autism, those pioneering doctors and parents who are not afraid of "the truth" about the current epidemic of autism, as noted by such groups as Generation Rescue.
Everyday I look and listen and sniff the air for clues for The Truth About Charlie. I spend a great deal of my time trying to figure out what is going on in my boy's head (and gather that, autism parents and parents in general spend vast quantities of mental energy in this pursuit). In this regard I think of life with autism as an ongoing detective story. The culprit is not "what caused autism" but what in the world is going on here, today, in front of my eyes. Why did he hit his head on that telephone pole after a most excellent swim? Why is he screaming now about "Kristy house" and asking me "schoolbus pencil." And I try to write the truth down here, as honestly as I can.
The truth is that Charlie has autism and Jim and I believe it our duty to teach him to live as well and as independently as he can, given his neurological disability. Perhaps I will be sad and devastated if, fifty years hence, "they" figure out a cure for autism and I'm sitting with a lawyer signing the papers for Charlie's life and funeral arrangements, whenever it happens after my own, should Jim go before both of us. We know we have to make every day the best; every day has got to have some morsel of good teaching and learning for Charlie, some infinitesimal step along the way to helping him have that good life he is just as entitled to "as anyone else." I may not solve the mystery but let no one say we did not try our best for Charlie and help him to try his best and, yes, be all that he can be. One look at Charlie swimming in the ocean--diving headfirst into a wave four times his size; staying under the salt water for several, several seconds; splashing farther and farther out beyond the adult boogie boarders--and I have all the evidence of what Charlie can be, can do, can learn to do.
The hero--the leading man, or heroine, in this love story--is Charlie, and all ASD kids, who rise everyday to slay a few dragons, clothed in the guise of the sushi monster, a thunderegg sky, or various primary-colored TV characters whose smiling visages and sing-song chants tempt again and again. Christopher in Mark Haddon's The Curious Incident of the Dog in the Night-time thinks himself a detective in solving the murder of Wellington, a neighbor's dog. Haddon nicely shows the autism in Sherlock Holmes with his uncannily focused ability to zero in on the minutest of details in solving a crime, and the detective that must be activated in all of us to understand the words, actions, and being of Charlie and kids like him. Charlie's best friend is that person who is more than happy to sit with him for a spell and try to figure out how to make him smile; who holds a magnifying glass to look for clues in one hand, and Charlie's in the other.