FIRST TIME LOST

Some people say that people with autism live in their own world in their own way, but people with Asperger’s live in our world in their own way. When you were little, one of your own ways of living in our world was your obsession with anything round. You were a knobby-kneed, curly-haired imp, mesmerized by anything that resembled a wheel. If it went in circles, you adored it.

One rainy day, you were in the family room with your record player, and I noticed your head was moving ’round and ’round as you watched more than listened to the songs. By the tenth time “The Wheels on the Bus” rang out, I was convinced I had to break the cycle or lose my mind.

“JoJo, let’s get in the car and go to the mall.”

“Can I watch the wheels on the car?”

“You can see them when we get outside, but it’s raining too hard to stand and watch them.”

“But I want to see them go around.”

“Joel, the rain will make you all wet if you don’t get right in the car, and besides, it’s not safe.”

“Mommy, I want to see them go ’round and ’round…please.”

“Will you stand on the lawn and not move?”

“Yes.”

“Do you promise?”

“I promise.”

Nothing moved forward when you got anxious or fixated on an interest. Frayed nerves along with trial and error showed me just how much I was willing to risk and what kinds of deals I could concoct in order to alleviate whatever was upsetting you. I hated the judgmental parental stares and whispers that came as part of the territory whenever I would try to calm you down by giving in to one of your unusual obsessions. On this day, no one was looking as I traded common sense for peace and allowed you to stand in the pouring rain, beside a moving car, so that you could watch the tires revolve as I backed down the drive. At the bottom, I braked, threw the car into park, jumped out, and scooped up my slippery, wet, delighted five-year-old and buckled you contentedly into your car seat. We drove off with you singing every verse of “The Wheels on the Bus Go ’Round and ’Round.”

The mall came into sight. A welcome relief, I thought, ready for a reprieve. Not so fast. As we entered the underground parking lot, you squealed with delight as we circled ’round and ’round, descending to the third level. There, we found a spot and got out of the car. Your word fairy must have cued you, and you announced we were at Level 3, Section B-5.

“Can you please remember where we are parked, JoJo?”

“Yes.”

“Hold on to my hand now.”

“Mommy, look at all the wheels and tires here. Can we watch them go around?”

“Maybe later. Now that we’re here, let’s go to the store to buy you some new pants.”

“But I don’t want any new pants…. I want to watch the wheels.”

“Pants first then you can choose: an ice-cream treat or wheel watching; but now, please hold my hand and let’s go.”

We arrived at the children’s clothing department and found our way to the sale items. A half floor full of round, spinning display racks…merry-go-rounds of clothing. You broke my grip, beelined to the closest round rack, and began spinning and spinning it until clothes launched off it like colorful rockets flying into outer space.

“Joel, look at the mess you’ve made! You must stop right now and come help me clean up.”

I grabbed your hand and dragged you with me while I tried to retrieve scattered clothing that had touched down in other departments.

“But Mommy, you giggled, it’s so funny. Do you see those brown shoes? They are wearing the blue pants I spun off the rack!”

I actually chuckled, but only till you broke away again to play hide-and-seek among the spinning racks. You were the perfect height to blend in to the clothing as you bobbed and weaved your way from one to the next. Thinking we should have stayed home with your records, I decided it was time to teach you a lesson. If you want to play hide-and-seek, I will play too. And when YOU can’t find ME, then you’ll be sorry. I saw where you were hiding and tiptoed to the nearest rack. When you spied me, I crouched down out of sight for a few seconds. Then I popped up.

And you were gone.

I edged my way around the rack slowly, expecting to see you beyond each curve. I reassured myself I would surely find you just past the next one. I crept three times around before panic grabbed me by the throat. You were nowhere in sight…an invisible five-year-old.

I pounced on the nearest sales clerk and choked out what had happened. Two security guards arrived and took a description of you. They said they would lock down the store, search the department, and inform mall security. They told me to stay where I was. My body stayed still, but my mind ran a marathon of bad thoughts. I winced with each new vision of someone tormenting or torturing you. I could almost hear you screaming for me while I was helpless to intervene. I tried to warn you not to be fooled by the man who promised you could pet his new puppy, but you were charmed and followed him. When he finished with you, he left you whimpering under a bridge.

My horror movie stopped when the mall security team arrived to say they had sealed off all mall exits and would begin a store-by-store and floor-by-floor search of the premises.

Not long after the guards left to coordinate the search an announcement came over the PA system. A voice called for “the mother of Joel Schwartz” to proceed immediately to the mall’s main information desk.

I bolted there only to have to produce identification proving I was Mrs. Schwartz. Once free, I raced down the corridor and could see you holding hands with a mall guard and a petite woman. I was crying and panting so hard, I barely heard them explain that the woman found you on the way to her car. You were sitting on the floor of level three of the parking garage, right next to our car in Section B-5.

When she asked what you were doing there, you told her you’d lost your mom so you went to the car to wait for me. I thanked the woman, sobbed, and thanked her again, and then we both cried more. Even the mall guards got teary.

“Mommy, aren’t you happy to see me?”

“Yes JoJo—I am so happy and relieved to see you!”

“Then Mommy, why are you and everybody else crying?”

At the time, I couldn’t begin to respond with an explanation of the difference between happy and sad tears because I felt it was just too intangible a concept about feelings for you to understand. Much later you educated me about feelings by imagining them as inanimate objects:

“Mom, do you remember that day when I was little and we each had an anger ball?”

“You mean when you were eight years old and I was screaming at you…and in the midst of sobs and blubbering you called me out for losing my temper, telling me you could see that I had an anger ball and it was red and yellow with orange spiky flames shooting out of it? You said you had one too, and that it was dark gray and black and filled with clouds of stinky smoke. I was so frustrated with you that I stormed out the door to make sure I wouldn’t hit you. You followed me out on the front porch and grabbed my hand and said you had an idea. You pointed at the garbage can and told me you would throw your anger ball into it if I would throw mine in first. I couldn’t believe you said that. You insisted that I go first because you were afraid of my anger ball. Slipping from fury to intrigue, I went to the garbage, lifted the lid, and pretended I was heaving a thirty-pound medicine ball into it. You smiled and imitated what I did. Then you put the lid back on, and we had a hug.”

“Mom, you remember why you got so mad at me?”

“Because Mrs. Nicholls told me you were eating pretzels out of the playground trash can, and the other kids were making fun of you.”

“But they said they would be friends with me if I ate out of the trash. You told me I had to learn to make friends by doing things that other kids want to do instead of only playing with my trains and buses.”

“That’s what made me so angry.”

“Because I did what other kids told me to do? Were you upset with me or them?”

“With you and them. With them for setting you up, and with you for falling for it.”

“I know I got a lot of things wrong—not on purpose, I just couldn’t seem to help myself. I really did try my best almost all the time.”

I think that’s what upset me the most…realizing that your very best was never going to be good enough. Forget adjusting expectations. Forget being grateful for what you could do. It seemed that the balance sheet was always based on what you couldn’t do, and that meant your future and ours would be all about not meeting the bar. No matter how much progress you made, each time you did something inappropriate, it offered further proof of failure and sent us all hurtling backwards. And we were already far behind. The crazy thing was that the more progress you made, the bigger the gap grew. Other kids were traveling at light speed, so the older you got, the more out of reach catching up became.

“Mom, were you more angry or more scared?”

“I think I was angry at the world and scared for you and us. I swung between hope and fear and anger and truth and lies. I wanted you to feel you could do anything you set out to accomplish. I had hope because almost everything we tried did help you grow. But then, with each new challenge, your achievements seemed to fade, and I could never really relax or catch my breath thinking you would be okay. I couldn’t muster the confidence that you would do what any given situation called for, but I lied and told you I believed you could…. I thought I was trying to convince you, but now I know I was trying to persuade myself, too. What about you? More angry or more scared?”

“I think I was mostly confused. Anything new made me really nervous because nothing was ever the same and the rules always seemed to change. And I couldn’t figure out what people were going to do next, even when I saw them do the same thing over and over.… I tried hard to do what I saw them doing because it seemed to work, but I don’t think I ever got it quite right. Doing what I saw them do never got me where they seemed to be. I couldn’t do it the same way as them. I could only do what they did in my own way. I think maybe the reason I like trains and buses so much is because they run on schedules and don’t change their minds. You kind of always know what they’re going to do next.”