A Day in the Life of Mr. Bones

If fluorescent lights and the pull of the moon affect an autistic child, imagine what puberty does. The confusion of being an in-betweener is magnified for a child with disabilities. In sixth grade when Eliot brought in his guitar for sharing time, he launched into a Jim Hendrix riff (without Jimi Hendrix's precision) then switched to The Wheels on the Bus, as if to say, "Where am I?"

Eliot had been anxious to start middle school, but when he got there he found it noisy, crowded, and overwhelming. His internal barmometer went whacko and so did he. He had learned the previous May that if he acted out he could go home, so he acted out and got sent home, over and over.

By the second month of school I had pulled him out again. We had an IEP meeting scheduled for the end of October, and it would take that long for the school system to offer Eliot the support he needed, support I had been asking for since May.

While he was home I didn't even try to do Edmark or Touch Math. It took all of my energy just to face the bigger picture of where Eliot's education was headed. But teaching opportunities presented themselves. We did the dishes and took the dog for walks. Eliot had gone from holding the dish brush with two fingers to gripping it and swishing it around the pan, and for more strengthening I made him hold the dog's leash. If he mutinied I offered to trade: I'd hold the leash and he could pick up the poop. Worked every time.

We took the dog on a walk through the woods, and Eliot was excited to stand inside a ring of redwood trees. I told him the stump on which he stood was the mama redwood, and after she died or was cut down, her babies grew in a ring from the stump. I pulled the leaf off a bay tree and held it to his nose.

One day we took an upper trail I had never walked. I knew where we would end up, but was unsure where the trail would lead us in the meantime, just as Blue and I didn’t know where we would end up with Eliot.

As we walked he asked dozens of questions.

“Where are we going?” Where indeed.

“Is this the kingdom?” he asked, referring to the forest in The Bridge to Terebithea.

“How do we get there?”

Of course I knew where Blue and I hoped we would end up, not how we would to get there. With Eliot we saw the sky as the limit, but in as many years as he had already lived, the sky would start pushing down on us. That was the reality. I did know one thing, though. My boy was becoming his own person and we needed to listen, to understand that he would arrive at some sort of independence in his early adulthood, but on his own terms as much as ours.

One Saturday Blue and I built Eliot a tree house in our backyard, his own Terebithea. We built a small platform, with steps and ropes for climbing up into the willow tree. After having asked for a tree fort for weeks, he ignored it when we finished it. Finally I took him out and helped him climb the tree. Halfway up, he stopped and asked to come down. He was afraid of heights and I had learned not to push too hard.

“Maybe in a year he’ll climb up,” I told Blue. Then I looked out the window and saw him standing halfway up to the tree fort. He went up and down several times, stopping at eye level with the platform.

A couple of hours later he was in the tree fort. Then he needed help getting down. A day or two later he went outside just before dark. When it got dark and I went to check on him, a small voice from the tree said, “I need help getting down.” The next day he was climbing in and out of the fort by himself, and I brought him and his cousin Neil a picnic lunch in the tree.

At any point in his growing life, Blue and I could build our child a fort in the tree and make sure the steps and platform were secure, but it was up to Eliot when he would climb up and take hold of the tree for himself. Every step a child like Eliot took toward the platform was a miracle.

The IEP was approaching at the end of October, and so was Halloween. Eliot decorated a bag for trick-or-treating. We took our annual trek to the pumpkin patch up the coast, and made soup from a white pumpkin, which Eliot called Halloween soup.

Although we were working with a nutritionist, Eliot was still skin and bones, and a skeleton costume seemed the perfect choice. He wore the costume through much of October. When we took Carly to surf practice, Eliot stood in the street at Pleasure Point in his mask. The steady stream of surfers driving by were duly frightened.

To walk the dog at night with his Dad, Eliot, already in his pajamas, put on a bathrobe and his skeleton mask. In the morning he wore his skeleton hands to eat breakfast. We called Halloween A Day in the Life of Mr. Bones, and took pictures of Eliot in costume walking the dog, riding his bike, playing the guitar. Although he had not heard the song that hit the pop charts when I was his age, he smiled when I sang,

"Me aaaaaaand Mr., Mr. Bones, Mr. Bones,
We got a thiiiiiiiing goin' on...."

"Dad and I are going trick-or-treating," he told me. "You stay home and hand out the candy." I did, gladly. Red wine goes perfectly with lesser-quality Halloween chocolate.

When they returned, I walked with Eliot to the haunted house up the block. Every year our neighbors, who live in a big, old restored Victorian, decorate the lawn elaborately with spider webs, skeletons, graves, lights, and scary music. Trick-or-treaters have to navigate the labyrinth to get to the rickety front porch where a cackling witch hands out candy. In its old-fashioned simplicity, it is the best Halloween display I've seen.

Eliot stood in the walkway of the haunted house for a long time, eyeing the witch, checking out the size of the spider, touching the hand of a skeleton. Then we walked home. After he handed out the last piece of candy, he put on his pajamas and brushed his teeth. As he climbed into bed he asked, “Can you take a picture of Mr. Bones going to bed?”

I did what I always did then, walked the neighborhood checking out people’s displays, moving from lit porch to lit porch like a ghost. A tulle fog hung over the coast that night; it could not have been more perfect.

Before I turned out the porch light, I emptied the pumpkins and moved them to the compost pile, marveling that there had been no tears, no hyperactivity, no meltdowns. The next morning when Eliot ran to the front porch and saw his pumpkins were gone, he cried. So I showed him the Day of the Dead decorations and took him out to the compost pile. I told him we were visiting the pumpkin cemetery for Day of the Dead. He had embraced Halloween from beginning to end, and even gave it a proper mourning.

The next week he returned to school with extensive support from a behavior specialist named Dawn. We agreed on a ten-thirty pick up for the first week or so, working our way to a lunch-time pickup and ultimately back to a full day. The two hours could not have come soon enough. It was not that Eliot’s company wore me down so much; I had enjoyed our time together in October. It was that I missed my time alone, to the point that when the week came for him to return to school I was noticeably depleted. A few days in a row of two solid hours' writing time would do me good. Then a swell came up and I found myself surfing Capitola alone. This never happens. Capitola Village is a swirl of tourists, surfers, and thriving restaurants year round. I guess the surfers were waiting for the tide to drop; it was high tide, but that was my window.

If you surf crowded breaks as I do, surfing alone can be eery. But I must have caught fifteen waves. I was there for forty-five minutes --an eternity-- before two other surfers paddled out, and the three of us took turns catching waves. Not a bad thing when the alternative is some surf-rat grabbing all the waves while routinely dropping the F-bomb. In that one-and-a-half-hour session, I felt my self return to some sense of normality. I did not know what Eliot’s future held, but whatever it was it would be okay.