On the Edge of the Spectrum

I knew it was a meltdown, a total loss of control over his emotions coupled with the inability to make sense of the situation. As a kid, Allen’s meltdowns were more frequent and short-lived; as an adult on the autism spectrum, they are just the opposite: few and far between, but as intense as a storm brewing for days in the open water.

He couldn’t find his driver’s license. He’d taken a load of scrap metal to the junker down in Chester, but he needed the license to get paid. Ron and I were in the back room, painting the walls a peaceful shade of sea-foam  green. I was finally, a year after Bonnie’s departure by marriage, taking back my office. I needed a space for my schoolwork and my writing, a place where my pens did not go missing and my books stayed where I left them.

The storm brewed all the way down 10^th Street and erupted at our door, bringing with it a barrage of motion. Allen came pounding up the stairs, shouting, “Where’s my driver’s license?” He burst into the room where the tranquil sea-form green was already covering half a wall. “Someone took my driver’s license!”

While Allen’s diagnosis of autism is new, I have been his mom for a very long time. Meltdowns—that total loss of control feared by those on the spectrum and those standing on the edge—can be caused by an overload to the senses, too much information given too quickly, emotions, performance demands, shifts in expectations, or frustration. In this case—as with many who have autism—there was more than one ingredient. Waiting for job-training through Occupational Vocational Rehabilitation is hard on Allen, who deals with his special needs by keeping busy. The government works slowly, a word not part of my son’s vocabulary. Allen collects scrap metal to sell as a means of productivity and “the stupid guy at the junkyard” was thwarting what Allen saw as an immediate need.

Allen also suffers from sensory overload, a condition that sometimes causes him to line his windows with aluminum foil and unplug every electronic in the house. While the rest of us cannot hear the low hum of power, to Allen it sounds like a roaring waterfall. The sensory issues sometimes means he shifts sleeping spots during the night, seeking a place “quiet” enough to rest. Last night, he’d ended up in the back room. Boxes I’d carefully stacked up were rifled through and dumped out. No driver’s license appeared.

I knew better than to reason with Allen. His extreme need led to frustration which led to irrational behavior. After a fruitless search, he conjectured that a woman he worked with at Liberty tax had taken his license. Even though I knew it made no sense, I drove him to the office anyway. You can’t fight the forces of nature. 

I could tell, though, that the most potent part of the meltdown was abating. In the passenger seat, Allen’s breathing was returning to normal. Even as we pulled up to the tax office, he was shaking his head and saying, “This makes no sense.”

That’s the main thing to remember about a meltdown; they make no sense to participant or observer. They are triggered, often inexplicably, by an outside force meeting an internal mechanism. Flint against stone. Wind against leaves. The world explodes.

By the time we had driven back home again, Allen had reasoned that a driver’s ID could be replaced and chances were it had been “misplaced” not stolen. The time was creeping onto 2:00PM by then, and I needed to shower and change out of my paint-spattered clothes to take Ron to a doctor’s appointment. While I was in the shower, Allen took possession of my cell phone.

I asked him for it as Ron and I left the house. “You can’t have it,” he said. I asked why, even though I knew better than to expect an explanation. “I don’t know,” he said. “I just need it.” He offered me his cell phone in exchange.

It is both useless and time-consuming to try and make sense out of a meltdown, but I wondered if Allen’s “need” of my cell phone was a way for him to fulfill the thwarted need of the driver’s license, a way to regain some control of a situation in which most control had been taken away. I knew, wise reader that I am, that a meltdown was usually followed by exhaustion. I fully expected to come home and find Allen napping on the couch.

But when we returned two hours later, Allen had painted another wall in my future office, had checked the PennDot web site to see how to get a duplicate license, and had called the “junk guy” to explain the situation. He gave me back my cell phone and went to bed early.

And I stood in the back bedroom for a while, admiring the calmness of the sea-foam green walls. 

Crazy trailer

Crazy trailer

About the Size of a Mustard Seed

Twelve years ago, my friend Karen spent Sunday afternoon reading 230 pages of Crazy: A Diary. At that time, it had another title and was still being culled from my many journals. She called me on Monday evening and said:

“I’m going on the book tour with you.”

Among the words she used to enthusiastically describe my work were “wonderful”, “riveting”, and “honest.” She had read up to the part where I fell apart and took a mini-vacation to Bryn Mawr, the part I had the hardest time writing because it showed my warts quite clearly. I told her that I did not always come off looking so good.

“But,” said my friend, “you come off as human.”

It was not the story I wanted to write. I wanted to write of God’s faithfulness through our many trials, how His strength had upheld me and kept me from falling, and I wanted a neat and tidy ending, a “happily ever after.” I wanted to come to the end of the story.

Despite Karen’s bubbling comments and support, despite the fact that other friends who read snippets assured me that it was a story that needed to be told, I resisted. I finished writing it, sent it off to a couple of publishers who said I had a lovely narrative style but the manuscript would need work to fit the current markets, and shoved it into a bottom drawer. I continued to write in my journals, but I figured that perhaps someday a fictional character with more courage than I would live the story.

I entered a doctorate program.

I wrote a dissertation.

I taught college.

I saw my husband through a whole bunch more surgeries and hospitalizations.

And every summer, during a bit of down time, I pulled the damned manuscript out of the bottom drawer and tried to rework it into something that didn’t make me look so vulnerable. So human. So full of warts. So lacking in courage.

I failed. It was what it was.

Last July (2014), I gave it one more try. I sat on my newly constructed back deck and read the whole thing. I cried. And I realized that my dream of being a full-time writer was being thwarted by my own inability to accept that I was, indeed, human. I loved the idea of being a writer, the notion that my words would lodge themselves into the lives of other human beings and became a part of those people I might never meet. I carry words in my head, words read in novels years ago. Phrases and beloved characters, images and descriptions, all are vivid to me. I live inside my head, continually attempting to achieve a balance between my outward and inner lives. Even while I am teaching and planning and cleaning and cooking and sitting in hospital waiting rooms, I am writing the scene in which my protagonist arrives at a crossroads in her life.

But I wasn’t writing what I was supposed to write. I was cowering behind the masks of created characters, letting them live my life. And so I decided to try and be just a little bit braver. I had read Julia Cameron’s The Artist’s Way two years ago. I decided to “step out and wait for the net to appear.” I gulped, took a swig of iced tea, and started blogging.

Within one day, Crazy: Diary of the Well Spouse had 38 hits. The comments people left on my Face book page were amazing. One woman admired my bravery in sharing the journey, the story it had taken me 14 years to face. But sharing it felt right. Being human felt right. A friend even called me in tears to say. “I had no idea what this was like for you. I wish I had known. I wish I had done more to help you.”

In the last 10 months, Crazy: Diary of the Well Spouse has been edited and trimmed down and read in bits and pieces over 900 times. (My slightly cynical older son says perhaps one guy has clicked on it 900 times; I sure hope not! That WOULD be crazy! ) The title has changed to prevent a lawsuit with the Well Spouse Association who told me, very politely, they owned the phrase “well spouse.” Two weeks ago, I had dinner with my friend Karen. I handed her the proof copy of my book. She took it in her hands as if it were a piece of Waterford crystal and said, “I’m ready for the book tour.”

So am I.

Warts and all. All it will take is a little bit of courage.