The High-Water Mark

2009-07-21T08:24:00.000-07:00

The Autism Advocacy Community in the last few years has been a very special time and place to be a part of. Maybe it's meant something. Maybe not, in the long run, but no explanation, no mix of words or music or memories can touch that sense of knowing that you were there and alive in that corner of time and the world. Whatever it meant. There was madness in any direction, at any hour. If not on Age of Autism, then on the blogs or Facebook or Twitter. You could strike sparks anywhere. There was a fantastic universal sense that whatever we were doing was right, that we were winning. And that, I think, was the handle - that sense of inevitable victory over the forces of Old and Evil. Not in any mean or military sense; we didn't need that. Our energy would simply prevail. There was no point in fighting - on our side or theirs. We had all the momentum; we were riding the crest of a high and beautiful wave. So hopefully, less than five years later, you will be able to go up on a steep hill in any state in America and look East, to D.C., and with the right kind of eyes you can almost see the high-water mark - the place where the wave finally broke and rolled back.

Part One:

2009-07-17T09:54:00.000-07:00

We were somewhere in the retched depths of the hospital when the drugs began to take hold. I remember saying something like, "He feels a bit lightheaded, maybe I should carry him..." And suddenly there was a horrible roar all around us and the corridor was full of what looked like huge vultures, all swooping and screeching and diving around us as we walked swiftly towards the MRI department. I screamed: "Holy Jesus! What are these goddamn animals?" I answered myself with: "Doctors."

Then it was quiet again. My husband had taken his shirt off and was wrapping our son tightly to facilitate the sleep process. "What the hell are you yelling about?" he muttered, staring up at the bright fluorescent lights with his eyes squinting. "Never mind," I said. "It's your turn to carry him." I stopped and handed our sleeping son to his father. No point mentioning those vultures, I thought. The poor bastard will see them soon enough.

It was almost eight and we still had what seemed like a hundred miles to go. They would be tough miles, what with the dead weight of our 60 pound son to carry. Very soon, I knew, we would both be completely twisted. But there was no going back, and no time to rest. We would have to ride it out. Press registration, for our MRI time slot had already passed by 5 minutes, and we were supposed to be there 5 minutes early to claim our spot on the schedule. Our son's new doctor had taken care of the reservations, along with the prescription for the sleepy pills our son had been given on the way to the hospital... and I was, after all, the mother who begged for the appointment; so I had an obligation to be on time for the appointment, for good or ill.

The nice doctor had also given me an extra pill, which my husband and I argued over the entire way to the hospital. Lucky for our son we decided to save it for him. Of course the inside of my purse now looked like a drug store. I had a bottle with one last sleepy pill for my son, 20 bars of xantax for myself (thanks to that drug pushing mother-in-law of mine), two bottles of water, several Lara bars, a coloring book, two spiral notebooks, and a whole galaxy of multicolored crayons, markers, pencils, pens... and also a full pack of baby wipes, two extra pull-ups, a change of clothes for my son, a GameBoy and two dozen games.

All this had been rounded up the night before, in a frenzy of high-speed driving all over our God-forsaken town - from the West Side, to the East Side, we picked up everything we could get our hands on. Not that we needed all that for the trip to the hospital, but once you get locked into an outing with a kid with autism, the tendency is to push the supplies as far as you can... you never know.

The only thing that really worried me was the sleepy medication. There is nothing in the world more helpless and irresponsible and depraved than a child in the depths of his first high. And I knew we'd get into that second pill pretty soon. Probably at the elevator shaft - yes, it was time for pill number two as our son started moaning and laughing at the same time. And then do the next hundred feet in a horrible, slobbering sort of spastic stupor until the pill kicked in and sent our son back to la-la land.

"Man, this is not the way to travel," said my husband. He leaned to one side to adjust his floppy-limbed load, humming along with the rhythm section of the muzak and kind of moaning the words: "One toke over the line, Sweet Jesus... One toke over the line..."

One toke? You poor fool! Wait till you see those goddamn vultures. I could barely hear the muzak...slumped over the weight of my purse, grappling with my cell phone as it rang out "Sympathy for the Devil." That was the only ring tone I had, and it went off constantly, over and over, as a kind of demented counterpoint to the muzak. And also it maintained our rhythm in the corridor. A constant speed is good for lulling a child to sleep and keeping him there - and for some reason that seemed important at the time. Indeed. On a trip like this one must be careful about waking the child. Avoid those quick bursts of acceleration that drag blood to the back of the brain and awaken him from slumber.

My husband saw the nurse long before I did. "Let's get this lady to help us," he said, and before I could mount any argument he was stopped and this cheerful looking woman was approaching us with a big grin on her face saying, "Ho my! I've never seen a boy so knocked out!"

"Is that right?" I said. "Well, I guess there's a first time for everything, eh?"

The nurse nodded eagerly as we all trudged on down the corridor towards the MRI department, the nurse following closely behind.

"We're so happy for your help," my husband said. "We were really desperate for another pair of hands."

O Christ, I thought, he's gone around the bend. "No more of that talk," I said sharply. "Or I'll put the leeches on you." He grinned, seeming to understand. Luckily the noise in the corridor was so awful - between the constant chatter of doctors and the muzak and my cell phone - that the nurse behind us couldn't hear a word we were saying. Or could she?

How long can we maintain? I wondered. How long before one of us starts raving and jabbering at this nurse? What will she think then? We were hardly containing our anxiety and fear. Will she make the grim connection when my husband starts screaming about vultures and huge manta rays coming down from the lights? If so - well, we'll just have to cut her head off and bury her somewhere. Because it goes without saying we can't turn her loose. She'd report us at once to some kind of outback nazi security guard, and they'll run us out of here like dogs.

Jesus! Did I say that? Or just think it? Was I talking? Did they hear me? I glanced over at my husband, but he seemed oblivious - watching each sign as we passed, carrying our still-sleeping son in his arms. There was no sound from behind us.

Maybe I'd better have a chat with this nurse, I thought. Perhaps if I explain things, she'll rest easy.

Of course, I turned my head around and gave her a fine big smile... admiring the shape of her skull.

"By the way," I said. "There's one thing you should probably understand."

She stared at me, not blinking. Was she gritting her teeth?

"Can you hear me?" I yelled.

She nodded.

"That's good," I said. "Because I want you to know that we're on our way to the MRI department to find out what's wrong with our son." I smiled. "That's why we're here today, we drove through the night. It's our only hope to find out what's wrong with our baby. Our doctor called in a favor and worked us in at the last minute, and we're late, had to change a diaper before we left the house - if we don't get to the MRI department in the next few minutes, hell, even if we do, they might turn us away and we'll have to start the whole damned process over again. Can you grasp that?"

She nodded again, but her eyes were nervous.

"I want you to have all the background," I said. "Because this has been a very ominous week - with overtones of extreme stress and anxiety and very little time to even eat... Hell, I forgot I brought a Lara bar; you want one?"

She shook her head.

"How about some water?" I said.

"What?"

"Never mind. Let's get right to the heart of this thing. You see, about twenty-four hours ago we were sitting in the doctor's office - the waiting room, of course - and we were just sitting there and this uniformed nurse came up to me with a pink piece of paper and said, 'This must be the paperwork you've been waiting for all this time ma'am.'"

I laughed and ripped open a Lara bar that I had pulled from my purse, which she was holding, while I kept talking. "And you know? She was right! I'd been expecting that paperwork, but I didn't know how long it would take. Do you follow me?"

The nurse's face was a mask of pure interest and bewilderment.

I blundered on: "I want you to understand this is my husband. He's not some clueless dad who tagged along so he could watch football in the waiting room. Shit, look at him! He doesn't look like the typical dad, right? That's because he's a Canadian. I think he's probably Edmontonian. But it doesn't matter, does it? Are you prejudiced?"

"Oh, hell no!" she blurted.

"I didn't think so," I said. "Because in spite of his nationality, this man is extremely valuable to me." I glanced over at my husband, but his mind was somewhere else.

I whacked my thigh with my fist, "This is important, God damnit! This is a true story!" My husband swerved sickeningly, then straightened out. "How far is this fucking place?" my husband screamed. The nurse behind us looked like she was ready to jump on the next passing food cart and take her chances.

Our vibrations were getting nasty - but why? I was puzzled, frustrated. Was there no communication in this corridor? Had we deteriorated to the level of dumb beasts?

Because my story was true. I was certain of that. And it was extremely important, I felt, for the meaning of our journey to be made absolutely clear. We had actually been sitting there in the doctor's office - for many hours - slugging back sludgy coffee with little snacks as chasers. And when the paperwork came, we were ready.

The office nurse approached our chairs cautiously, as I recall, and when she handed me the pink paperwork I said nothing, merely read. And then I lowered the papers, turning to face my husband. "This is from the doctor," I said. "She wants us to go to the hospital in the morning, and make contact with a Portuguese doctor named Lacerda. He'll have the details. all we have to do is check in and he'll seek us out."

My husband said nothing for a moment, then he suddenly came alive in his chair. "God hell! he exclaimed. "I think I see the pattern. This one sounds like real trouble!" He tucked his khaki undershirt into his white linen pants and picked up his coffee cup. "You're going to need plenty of medical and general advice before this thing is over," he said. "And my first advice is that we should get in our very fast car and get the hell on the road." He shook his head sadly. "This blows my mind, because naturally we didn't think this was even an option - and we'll have to arm ourselves with insurance... what do you think? Can we do this?"

"Why not?" I said. "If a thing like this is worth doing at all, it's worth doing right. We'll need some decent supplies and plenty of cash on the line - if only for vending machines and a super-sensitive tape recorder, for the sake of a permanent record."

"What kind of test is this?" he asked.

"MRI," I said. "It's the best way for the doctor to know what's going on inside our son's brain - it's fairly common in kids with autism to have one at some point - at least that's what my books say."

"Well," he said, "as your husband I advise you to buy plenty of supplies. How else can we stay at the hospital all day?"

"No way," I said. "We don't have time to stop and buy supplies, we'll get them when we arrive in the town where the hospital is... and where can we get hold of some Lara bars, we should have a bunch on hand?"

"What's that?"

"A fantastic new treat," I said. "They are very tasty and our son enjoys them, plus they are gluten and casein free, sugar free too."

"That sounds about right for this kid," he said.

"It is," I assured him. "The fuckers at the hospital won't have a god damned thing for him to eat."

"Can we handle this with such short notice?"

"Absolutely," I said. "I'll call Mom for some cash."

Fear and Loathing in Autism

The High-Water Mark

Part One: