It’s a nut?
It’s a knot?
My mind flashed to Citizen Kane and Rosebud. I imagined Ben decades from now on his deathbed, uttering his last thoughts to someone who has no more idea what he means than I did. “Eesinnuh, eesinnuh.”
Sometimes he’ll say “Wyet.” Pause. “Errrr.” My wife, Karen, and I know that isn’t Wyatt Earp or quiet earth. Sometimes with Ben it seems we know more things that aren’t than things that are. In that we have much in common with the scientists, who also now understand that autism, or pervasive developmental disorder, or whatever term you choose, isn’t a psychological disorder brought on by bad parenting. Bruno Bettelheim didn’t know that a half century ago–or chose not to entertain the idea. Instead, with the certainty of a medieval barber-surgeon promoting bloodletting to cure all ills, he poured blame on parents already locked in an emotional chamber of horrors. We now know that autistics suffer a devastating disorder of neurology, not of psychology. The psychological problems tend to come to those who love them.
At least Ben and I made direct eye contact–something that took plenty of training and practice, and something my wife and I almost take for granted, though we once thought it might never become routine. And Ben was in a good mood, beaming his radiant smile, which brought to mind his mother’s comment that when he’s happy he’s the most delightful little guy, but when he’s unhappy he’s the most distressing person imaginable.
She’s right, except for the “little guy” part. Ben is five feet tall and 150 pounds and wears a men’s size eight double-wide shoe. And he’s eight years old. If he were a little guy he’d be easier to control, at least physically. Steinbeck’s Lenny was hard to control for the same reason. We will never have pet rabbits in our house. I’m the parent genetically responsible for his size, weighing in at 300-plus pounds and standing six foot six. Even though I can still control him better than his five-foot-four mother, my limits are too often tested, too often exposed. Like when we’re taking a walk.
“Taking a walk” is one of Ben’s phrases that’s easily understood, even if it’s often belted out for no obvious reason–during a bath, for instance. We revel in all of Ben’s words, because there was a time when we didn’t hear any. On this particular Saturday afternoon “taking a walk” described what we were doing. Then again it didn’t.
It had been a nice day. Ben’s occupational therapist had called to cancel his standing appointment, which meant we had no scheduled activities for him that day. That can be a challenge. But the weather was nice for January, and Ben always loves the train. He and I had climbed into the van and headed for the Linden stop at the end of the Evanston el line.
As usual, the trip to the Howard Street station and back filled Ben with joy. The highlight, for me at least, was when he startled the other riders by abruptly yelling, “Now watch Mr. Bunny!” That particular war whoop comes from one of Ben’s many videos that have “crossed over,” which means he loved it and watched it incessantly until one day he became absolutely, profoundly terrified of it. But though he can no longer watch it, he still loves to quote it. Loudly.
When the ride ended we headed for the van. Driving north on Sheridan Road through Winnetka, I passed a small playground near the lake. Given that the weather was unseasonably warm and that it was still six hours until Ben’s bedtime, I doubled back to the picturesque scene of monkey bars and moms and dads playing with their kids. Ben was happy to hop out of the van and head for the equipment. “Hah!” I thought. “His OT is free today.”
One of the good things about this park is the unbroken fence that runs along the top of the bluff and makes it impossible for Ben to climb down to the beach. Walks along the beach can be nice, but he inevitably wants to go much farther than he should–wants to climb over a rusty seawall, head up onto private property, or wade out into the freezing water fully clothed to get around a barrier. I wasn’t in the mood for that brand of fun.
Ben was. Once he’d finished with the jungle gym, it was time to try to get down to the water. Moving along the length of the fence, he crawled through some thick bushes in the north corner of the park and ran into the high wooden privacy fence separating the park from a mansion. He didn’t give up. It was now time to walk along the privacy fence, and I expected that once we hit the sidewalk along Sheridan he would want to go around the end of the fence and head back toward the water on the private property. I was ready to do battle. To my surprise, once he reached the sidewalk, he turned to the left and started walking south along it.
At first I thought we were now just going for a walk, and maybe we were, though later I realized he might have thought that somehow the sidewalk would eventually lead to the water. But at that moment I said to Ben, “Oh, OK. We are taking a walk.” I was relieved to have avoided a scene. And we both needed the exercise.
We walked, and walked. After going well beyond what I thought was wise, I said, “OK, Ben, time to go back to the car.” He pushed ahead, deep into the perseverative walking that can mean trouble. If he’d been small or still four years old I could have swooped him up onto my shoulders, and that would have been that.
I set my sights on the bend in the sidewalk where Winnetka ends and Kenilworth begins, hoping Ben would somehow see the slight change of direction as a good place to turn back. He didn’t. I became more concerned and more adamant, finally turning back myself and saying, “OK, Ben, I’m going back now. Bye-bye.” Luckily, he followed.
My good mood restored, we were about three minutes into our long walk back when the walk, the day, the weekend itself shifted. The tantrum began.
Actually “tantrum” doesn’t do justice to this frightening state of Ben’s. Some behavioral specialists use the term “behavioral seizure,” which, with its clinical detachment, also misses the mark. I’ve yet to come up with a term that comes closer. It just might be one of those things where you had to be there. But you don’t want to be.
Imagine what life must be like when you have a desire, let alone a burning need, to say something, to communicate–joy, pain, curiosity, frustration, hunger, affection, fear, fatigue–and you can’t. Ben’s friends have to be detectives, but even then we figure out what he’s trying to tell us only if we–and he–are lucky. This Saturday I wasn’t.
Ben stopped, did a standing bunny hop, screamed, and hit himself with the full force of both hands twice on the sides of his head. He bent forward at the waist, flung himself back up straight, screeched, smashed himself in the face with his left hand, and sobbed loudly. All in the first five seconds. This was why I’d been worried. We’d gone too far. I felt like the old man, like the sidewalk was my sea and Ben my marlin.
I grabbed his wrists and said, “OK, Ben, come on. We have to walk to the car. No hitting.”
He screamed, shifted into deadweight, and crumpled to the ground. Then he was on all fours on the sidewalk, slapping himself in the face.
“Come on, Ben, we have to walk. Let’s get to the car and have a bottle.”
Yes, he’s eight, taller than his grandmother, heavier than his mother, and yes, he still drinks diluted apple juice out of a baby bottle. Is it our fault? Maybe. Some kids bite their nails, some adolescents smoke, and Ben still has a bottle. He loves it, it soothes him. It’s also handy for getting medication into him, since he’s extremely defensive when it comes to ingesting all but a few foods and drinks.
I was hoping a bottle would be a carrot. Not today.
I bent down and lifted him to his feet from behind, my arms under his. He stood, screamed, jumped, and flailed, knocking my glasses askew and getting my nose hard enough to bring water to my eyes.
“Dammit, Ben,” I blurted out.
Shifting into the numb, task-oriented mode of focusing only on essentials, I stood next to but slightly behind him, a position that allowed me to walk, hold him up, push him along, and keep hold of his wrists all at once. I was sweating, my back was aching, and my ears were ringing–his voice is loud. I didn’t know if I could keep this up for another third of a mile. I did know that I didn’t have much choice.
After another dozen steps Ben tried to jump up and down before reverting to deadweight. Holding his arms up, he slid to the ground, where he lay flat on his belly, bouncing his face on the asphalt and screaming. We were blocking a driveway that led into several lakefront estates, and I imagined a Lexus flying up it and squashing us both. I only then noticed the spectacle we’d become for passing cars.
At this point Sheridan Road is two lanes and the sidewalk is close to the street, separated by only a thin slice of lawn. Cars were slowing down to see what was happening–who was that huge guy with the mini Hulk Hogan and what the hell were they doing? I noticed that one had turned around and come back, the driver staring. I waved cheerily, simultaneously understanding their concern and wanting to flip them the bird and ask if they’d paid for their tickets. A couple of fortysomething females jogged by in fashionable pink and yellow outfits, and they too were staring. “Autistic tantrums are the best,” I said. They said nothing.
Ben made another little leap, lost his balance, and tumbled to the sidewalk, hard. His arm seemed to take the brunt of the fall, and I worried that he might have broken it. Less than two years ago he misjudged a step, fell, and broke his wrist. But he got to his feet and started slapping himself again. Relieved for a millisecond, I grabbed his wrists to try to stop him. I knew he’d have bruises on his face later.
I was half expecting a cop to pull up, which I would have half welcomed. “You feel like serving and protecting? How about serving us a lift to our car and protecting us from the rest of this tantrum?” But the cops didn’t come.
Ben’s nose was bleeding–not from the inside, but from a scratch at the bottom of his right nostril, caught by one of his fingernails. His face was red and flushed but not wet, since for some reason he never sheds tears. But his nose was running, and he was hollering. As I said, “Bye-bye. I’m going to the car,” he rose, only to bolt toward the street. Frightened, I lurched forward and reached him just before he got to Sheridan. He went down again, trying to crawl across the strip of grass into traffic, still slapping away at his face. This time my attempt to lift him failed–he was limp on top but kicking from the bottom.
I was breathing heavily, wondering why we couldn’t have just one nice, normal day where a trip to the playground meant only a trip to the playground. And I felt sorry for Ben, because whatever he was going through, it sure wasn’t fun for him, and his dad couldn’t do much to help. I wondered if his stomach hurt. I wondered if he felt worn out yet, as I did.
After more of the same, we finally reached the edge of the park and the van, where I discovered one possible reason for Ben’s misery.
One of the things that tend to differentiate those who’ve raised kids from those who haven’t is their comfort level when dealing with substances that come out of infant and toddler bodies. And one of the things that separate many parents of special-needs kids from other parents is that they have to deal with those substances year after year and in much larger quantities. A toddler is one thing. An eight-year-old toddler is quite another. And Ben could not have been comfortable walking with what he had in his very large diaper.
The thought had occurred to me earlier that gastrointestinal distress, or the end result, might have been what was causing the trouble, but I hadn’t bothered to check because what good would it have done? Since our walk had been unplanned, I’d left the ever-present backpack of wipes, diapers, plastic bags, and change of clothes in the van, and even if I’d had it with me it wouldn’t have been much use on the sidewalk along Sheridan Road. I could just imagine the faces of the drivers as they got an eyeful of that scene.
Ben didn’t stop yelping and hollering once we were in the van, but at least he assumed a position that allowed him to be stripped, cleaned, and re-dressed. I tried to hand him a bottle, but he pushed it away and said, “Pig, pig!” He wanted the little pink rubber pig I’d put in my coat pocket when he began climbing the monkey bars. Had he wanted it all along? Who knows but Ben? He held the pig, and I went to work.
In the ten minutes it took to clean up Ben, with sweat dripping down my nose, arms aching, and a headache approaching, I felt both relieved that it was over and fortunate that it hadn’t been worse. “Shit happens” is the saying, but in our family, given all Ben’s chronic disorders, it should be “Diarrhea happens.” At least this mess was contained.
The week before, Karen had been driving Ben to an evening therapy appointment. Ben’s twin, Jake, was along for the ride and the hour in the waiting room. Jake doesn’t suffer from autism, but he does suffer the events that come from living with it. He also has a weak stomach.
Jake was in the far back row of the minivan. Ben was in the middle row, and Karen was at the helm, with Zena, the family golden retriever, riding shotgun.
First they drove through McDonald’s for cheeseburgers and fries. Ben takes his cheeseburgers plain in the extreme, which means hold everything, including the meat. “Just cheese and bread,” we’ve said to confused drive-through workers more times than we can count. “That’s right, like a grilled cheese.” “We don’t have grilled cheese.” “Right, OK. That’s why we want a cheeseburger–plain, with no meat.” Sometimes it’s easier to order a plain cheeseburger, remove the meat, and toss it to Zena, a solution she clearly favors.
As they merged onto the expressway Jake yelled to Karen, “Mom, Ben took off his seat belt!” She looked back to see that Ben had removed not only his seat belt but all of his clothes. And he was sitting there peeing all over the back of the front passenger seat.
Karen kept driving. This type of event, though certainly not desired, is nothing exceptional. At least it was only number one.
Karen glanced back and saw that Ben was now standing up. She also saw that the number had been revised. Hey, diarrhea happens. All over the seat. And then all over Ben’s hands, another seat, and the floor.
Zena caught a whiff, her nose twitching in the air. She’s a great dog, but what she, like most dogs, is glad to ingest is enough to make anyone sick. Except for Karen and me. We’ve seen worse. Still, Karen didn’t want Zena to get back there and spread the good cheer around even more. Zena made her move, but Karen grabbed her leash just in time.
Karen hadn’t made a big fuss over any of this because first, it doesn’t help, and second, it’s better not to draw Jake’s attention to the festival of sights and smells. But then Jake, burger in hand, turned from the view outside to the one inside.
“Oh God, that’s the most disgusting thing I’ve ever seen!” he said, displaying a short memory.
“I know, Jake.”
“Oh no, I’m gonna throw up!”
When Jake says that, he isn’t speaking figuratively. Karen, imagining the scene shifting from black and white to wide-screen Technicolor, lost her usual Zen-like calm, her voice becoming firm and desperate and louder. “Jake! Don’t throw up!”
“Then can I give my cheeseburger to Zena?”
The next thing Karen saw was a cheeseburger flying past her shoulder and landing on the front seat. Zena’s attention turned from the enticing smells behind her to the cheeseburger that had plopped at her side. She gulped it down.
Karen was thinking that they still had a few more minutes on the expressway before getting to the therapist’s office. Only then did she realize that Ben’s teacher had forgotten to send his backpack with him when he left school. Karen had no wipes, no clean underpants, no diapers, and no clean clothes.
Then she felt the love pats. Ben had moved over and was patting her on the head, sharing the wealth. Well, at least he was in a good mood. So was Zena. And Jake hadn’t puked.
Pulling into the parking lot, Karen instructed Jake to go inside and tell Ben’s therapist what was happening and to ask for some wet rags or paper towels or anything that might help. Carmen, who was still in a session, brought out a bucket of water and a roll of paper towels. Karen cleaned Ben’s hands, found a shirt of mine in the back of the van that was awaiting the dry cleaner’s, and slipped it on him. On the way to the office, she walked bent over, cleaning the bottom of Ben’s bare feet so he wouldn’t leave footprints on the waiting-room carpet.
Carmen is a wildly dedicated therapist, and once Ben had been cleaned up as much as possible, she told Karen that the session would go on. She didn’t want Ben to get any ideas about how to avoid therapy on days when he wasn’t in the mood. That would probably never happen–he loves his time with her–but the point was well-taken. Ben pranced into her office, and Karen dutifully marched back to the van to spend the therapy hour cleaning up with soap, water, paper towels, and Zena.
That’s why I felt fortunate as I tended to Ben while he stood howling in the van. Once he was dressed and buckled in, I handed him a bottle, which he grabbed and sucked desperately as I pulled out onto Sheridan. We were going home. It was over.
Sure it was. When we got home I noticed that Ben was limping. He could barely make it up the step and into the house. By bedtime he could hardly walk. It looked like my relief at his not breaking his arm when he fell was hasty. Now I wondered if he’d broken his leg.
“Does something hurt?” I asked.
He didn’t answer.
I said, “Ouch, my–” and paused.
“Foot,” he said.
This was a huge leap from only a year earlier. He’d actually communicated that his foot hurt. Great!
The next morning we called our doctor, who directed us to the emergency room for X rays. After lining Jake up with activities so he wouldn’t have to spend his Sunday in the ER, we headed out.
The ER was busy. We pushed Ben around in a wheelchair, which he enjoyed. After an hour or so it was our turn. The doctor first wanted to X-ray Ben’s foot, ankle, and leg. If those were OK, he wanted an X ray of Ben’s hip.
Holding Ben down for X rays must be like roping a calf. He didn’t want to lie down in a strange and dark room, and he sure didn’t want to hold his foot, leg, ankle, or any other body part perfectly still at a weird angle. The X-ray technician’s frustration showed, but not as much as Ben’s. Somehow, after many minutes and many more grunts and protestations and reassurances, we were done.
The hip X rays were much easier, and then we were free to go home. Four and a half hours after we left we were back, bones intact.
We headed to the “big bed” for tickling and squeezing, two of Ben’s favorite activities with daddy.
He giggled, then looked at me.
Is it ever.
Art accompanying story in printed newspaper (not available in this archive): illustration/William L. Brown.