What’s Love Got To Do With It?

“Hopeful but realistic” is how Ralph Savarese, a professor of English at Grinnell College, describes the message of his book, Reasonable People: A Memoir of Autism and Adoption. Savarese’s 14-year-old son, DJ, wrote the last chapter of the book. An article in today’s Daily Iowan opens by quoting DJ writing about himself:

“I’m reasonable. Reasonable people promote very very easy breathing. Fearful creatures sadden me. Treating me as really weird teases the creatures.”

The Daily Iowan notes that, while there is a familiarity to the basic narrative of Reasonable People—”An empathetic writer takes on the tale of a poor and helpless child, whose dire circumstances have left him figuratively without a voice”—this narrative is literally and actually what happens in the book. The first chapters detail how Savarese and his wife, Emily, decide to adopt DJ. Says Savarese:

“It was a love story that evolves [with DJ]; we just got in deeper and deeper. We really had a relationship with DJ even though he had no words. We knew that he could have a better life.”

A love story—-while, in order to learn more about, to understand, autism I have found myself trying to get my mind around the latest research on the brain (as this new study on how genetic mutations alter the “shape or folding” of proteins in the nervous system, published in the June Structure) and have more than once wished I had a legal background not the better to argue before the Special Master, but to best represent Charlie’s educational needs and to better understand special ed law—-at the end of the day, I know I have gotten myself into this because of one very basic thing: Love of my boy, once little and now growing up so much that I fit the flipflops my mother bought for him—-his feet are already so much longer.

“Finding out your child has autism is like the end of a love affair and the start of a new, lifelong, really beautiful relationship,” was my description for Autismland, the weblog I wrote about Charlie’s daily adventures for almost two years, and from entry #1 to # 614, I have to say (at the risk of sounding a bit mushy, with violins playing in the background), it was always about love.

They bring him to me just after dawn. I turn, and he is there. They show me how to bend my arms so that I can take him down toward my heart, and there is nothing else to say. The nurse leaves. I fall profoundly, madly into love, peel the aftermath of birth from my son’s black-haired crown, try to slow down the shifting of his well-lashed eyes. (p. 15)

So writes Beth Kephart on the birth of her son Jeremy at the start of “dancing,” the first chapter of her book, A Slant of Sun: One Child’s Courage. “….I will not change the last word of the story. It is still love,” writes Clara Claiborne Park about her life with her now-adult daughter, Jessy in her “Epilogue: Fiften Years After” to her 1967 The Siege: The First Eight Years of an Autistic Child (p. 320). When Charlie was just diagnosed eight years ago and I was worrying so much about hurrying to “intervene early,” it seemed that we had to figure out how to “get” to him. But as our years of life together with Charlie have increased, I think rather of this image of “a lotus growing out of the mud” that anthropologist Roy Richard Grinker uses to describe his daughter Isabel in the first chapter of his book, Unstrange Minds: Remapping the World of Autism:

Isabel has taught me that the unexpected, even the beautiful, can emerge even from the undesirable, like a lotus growing out of the mud, its beauty and purity unsullied by its origin. That beauty can be found in a single person, inside of whom there is something—no, not something “normal,” but a brilliant light or an inner truth struggling to blossom.

…….. My job is to clear the land for whatever growth is to come, even if, sometimes, no one else believes it will happen……..(p. 35)

Today on the second day of vaccine court, my very special “master” and Jim and I had the usual mundane day. Jim put Charlie on the schoolbus; Charlie went on a bowling field-trip with his classmates (I guess this was rather special—-and all the more so, because they were supposed to go two weeks ago and, on arrival, the bowling alley was locked—-talk about having to deal with the unexpected); Charlie did speech therapy with a young woman we have known for six years (first as babysitter, classroom aide, ABA therapist……). We went on a walk to the train station after which we usually practice the piano, but we could not because I had forgotten Charlie’s token board at the piano teacher’s house on Sunday and Charlie would not practice without it. Accordingly, it was into the green car, to drive straight into the thick of New Jersey commute traffic—-into a traffic circle—-and finally up to the piano teacher’s door, where I spied a plastic bag containing the token board (no laminated piece of cardboard covered in velcro and velcro-backed pennies was ever so yearned for; yesterday we go through 2 1/2 songs before Charlie started to moan and cry, and to turn over everything in the room in search of those pennies).

A mother and a father were sitting on the steps of the neighboring apartment. We exchanged greetings; Charlie was zooming across the grass and laughing and warbling. “HI! HI! Hey kid, HI!” said a little boy who was literally (because Charlie was briefly standing next to him) half Charlie’s height. Charlie said “hi” on the run here or there and the other boy followed him. “Kid! Hey kid!” An even smaller boy tried to keep up. The parents on the steps and I exchanged smiles. Charlie ran back to the car with the token board in both hands: What Charlie loves is worth everything to him, forget about what price tag the world would assign.

One thing—three, rather—are his dad’s blue and green jackets and Charlie post-dinner and -shower, stood with all three semi-wrapped around his shoulders in the driveway at 9.30pm, on the lookout for Jim. I explained that “Dad has to work late tonight” and that “Dad’s in his office”; Charlie still stood and looked down towards the train station, woebegone. “He’ll come back earlier tomorrow,” I said; Charlie went in, dumped the jackets on my bed, and then got his blanket, his teddy bear with its red-white-and-blue flip flops, a large case of CDs, and my old laptop. “Turn on,” he said, holding out a purple disc with a star design. “All done,” after he had heard ten seconds of a song; he requested and rejected two more before I put in John Coltrane’s One Down, One Up. Charlie wrapped himself tightly in his blanket, tucked himself in under the covers, and listened to several minutes of “Song of Praise.” He was serious, with a lurking smile.

At 10.10pm, it was time for bed and Charlie, when I went to check on him after a few minutes, was sound asleep with the bear’s flipflops in his left hand.

What’s love got to do with it—unconditional love of the forever kind?

Everything, and then some more.