Chapter 3

Two Septembers later, I sat idling in my red Toyota minivan in the empty grade school parking lot. No one knew I was inside, staring at a single sheet of paper that would define my son’s academic life. For eighteen months, I had been wrestling with, and finally accepting, the idea that Andrew needed to be in a special education program in order to learn. I scanned the paper for the label the neurologist had attached to my son: Asperger Syndrome/High Functioning Autism. An inky blue diagnostic code scrawled across the top of the form allowed the public school system to access federal funding for their special education department.

Tucking the paper in my purse, I switched off the car, knowing that I would have to play their game, even if I didn’t like it. I pulled down the car visor and caught a glimpse of my pale and anxious reflection. It immediately brought to mind my mother’s familiar words: “Put a smile on your face, a sparkle in your eyes, and for goodness sake, put on some lipstick. You look washed out.”

I grimaced at the thought and went rummaging through the bottom of my purse in search of something to make me appear more presentable. I wound my hair into a knot, strangling it with a rubber band, then quickly smeared a layer of coral lip gloss onto my pale lips.

“Are you ready?” I spoke into the rear view mirror to two-year-old Hannah.

Hannah kicked the back of my seat with a repetitive tap, tap, tap, and a wet thumb grazed her lips before being plugged back into her mouth. I dropped my keys and crawled into the back, huddling next to her car seat. She turned to me, eyeball to eyeball, her nose smashed to mine.

“Good Mommy,” she said, planting wet gooey kisses on my cheeks.

I unhooked the straps and drew her onto my lap, stroking her fine blond hair, squeezing her soft body to mine—something Andrew would never allow. Minutes later, Hannah and I were walking together across the parking lot to her brother’s new school, her ladybug rubber boots splatting in the puddles along the sidewalk.

“Like this, Mommy!” Hannah hollered, stomping both feet into the deepest puddle.

A spray of mud soaked the side of my jeans and dripped down the sleeve of my coat. Hannah’s pleased grin reached up to me as I decided whether or not to be angry.

“Do it!” she urged, pulling at my arm.

I stomped in the puddle. A split second later, we were both covered in splotches of mud. A loud squeal of delight ripped through the air as Hannah broke free and ran down the sidewalk. I reached her as she stopped in front of the office.

The door to the administration office had a construction paper sign on it that read: Welcome New Kindergarteners! School would not begin for two weeks yet, but the office staff was busy. The secretary at the front desk greeted me with an overly sweet smile, then a look of concern as she saw the streaks of mud on our faces. I dropped the neurologist’s letter in to her overflowing in-box, leaving before she could ask any questions.

The first day of school set the standard for what would quickly become our daily routine. Andrew began his negotiations the moment he woke:

What’s for breakfast?

Cheerios.

Where’s T-Rex?

In bed where you left him.

Where’s Ben?

Same place.

Which pair of pants am I gonna wear?

Your dinosaur pants.

It was always the dinosaur pants with the label cut out. And they were always on backwards. Andrew’s teacher wanted him to sit in a reading circle, knees touching the other students, hands folded in his lap. But that was never going to happen; we had learned that in preschool. Each morning Andrew moved his two-foot square carpet to the far side of the room, sat on it cross-legged with T-Rex next to him—but not touching.

Me? I liked school. A lot. I liked having those few precious hours free from the rigid confines of Andrew’s world. And I was just getting into the swing of running my own part-time design business with a steady clientele. After lunch, when the school bus rumbled up the street, I would anxiously wait for a red-haired boy to scramble up the steps and burst through the door. I dreamed of Andrew telling me he had made a new friend and asking me if he could invite the friend to play. But it never happened. It was Hannah who filled in that gap without ever meaning to. She was his one-man fan club.

One rainy November afternoon, as I was proofing brochure copy for a client, I caught sight of Hannah with her nose pressed to the living room window—her breath leaving fog circles on the glass. She raced to the door after spotting the school bus deposit Andrew down the street.

“Hellooo, brother!” she squealed while yanking open the door.

Andrew quickly handed her a green balloon, saying, “Balloons scratch my brain.”

A sudden memory of my three-year-old dropping a twisty balloon of a wiener dog and tearing across a parking lot came to mind. Now, three years later, I figured out why he kicked the clown at preschool.

Pulling off his backpack, Hannah took Andrew by the arm and led him to the kitchen where I was preparing lunch.

“It’s macaroni and cheeeeeeese and orange carrots and applesauce and gummy bears,” she announced, pulling a hand from her pocket to show us both the gummies she had stored in there. Her continued babbling and silliness told me she was ready for a nap as soon as I could get her to finish lunch.

While the kids sat happily in front of their gourmet lunch, one of my clients called in a panic. They begged me to edit some artwork and email a revised draft to them in forty-five minutes for a newly scheduled conference call. I agreed to do it, knowing full well I would need every one of those minutes to complete the work. Part of that time would be spent battling the dial-up modem that took forever to transfer complicated graphic files.

I added goldfish crackers to both kids’ plates, turned Barney on the TV, and ran upstairs to the studio. Within minutes, I heard two sets of feet bounding up the stairs and they both burst into the room.

“I want to play with the Play-Doh, Mama,” Hannah said, reaching into the bottom drawer of my file cabinet. I watched as Andrew gathered colored pencils, markers, and paper I kept in my office for such occasions, then quarantined them to a table at the back of the room with their art supplies. Five minutes later, a fight broke out. A quick glance at the clock showed I had less than thirty minutes left.

Negotiations went poorly, so I quickly resorted to bribery. With little hands full of M&M’s, the dispute was settled. Eventually, I heard kind voices in the background and an offering to share. The TV clicked on in my bedroom down the hall and the sound of cartoons floated into the studio. All was well.

With only three minutes left, I entrusted my file to the static-y screech of the modem cramming my artwork into small byte-sized pieces. Sensing that the room was too quiet, I got up to check on the kids.

“We’re making art for you!” Andrew said, looking up.

He had removed the cutting board from my drafting table and placed it on the carpet in front of the TV. Paper and painting supplies were laid out for both Hannah and himself. Paper cups filled with poster paints were lined up like soldiers in front of each workstation. Four empty paint bottles were piled up against the base of my bed, with most of the thick poster paint splattered on my white bed skirt.

Hannah had obviously become bored with her paper and found the carpet a better medium with which to work. Broad, blue, yellow and green paint strokes arched across the carpet. My heart skipped a beat.

“This is just like you do, Mama,” she said without breaking her concentration.

I did exactly what my parenting lessons said not to do: I completely freaked out.

“What were you thinking?!!” I shouted at my three-year-old.

Stunned, she stared at me.

“Why would you do this?!” I yelled some more, grabbing at a tipped-over paint bottle.

Her lower lip quivered. Her mouth opened and then closed before she scrambled for her brushes and took off at a full run.

“I will wash them for you!” she shouted.

Blobs of sticky poster paint streaked its way down the hallway carpet. Andrew made a bee-line for the door.

“Stop!” I yelled at them both.

Andrew froze in place, his brushes rolling from his hands, diving at angles into the carpet. I picked him up by the armpits and dropped him on the floor of his room before slamming the door. Seeing what happened to her brother, Hannah dropped everything and bolted to her room.

I just stood there, wild with frustration, my feet firmly planted on a rainbow-colored carpet. Why was this so hard? I was trying to do everything right. I loved my job as much as I loved being a mother. I was contributing to the family with my small business, and I was staying at home to raise my kids. Isn’t that what I was supposed to do?

Hannah’s little voice floated through the door, “We’re sorry, Mommy.” And then silence.

I spent the next ninety minutes trying to clean the carpet and failed. Two hours later, the carpet cleaner was at our house and I was left with a bill for three hundred and fifty dollars.

Only then did I brave a call to Jon at work. I described in detail what had happened, adding in all the gory details and admonitions, wondering out loud why the kids just couldn’t wait.

“And I can still see some of the paint!” I whined.

For a moment the line was quiet.

“Maybe we should have them paint the walls to match?” he said, laughter in his voice.

I wasn’t amused. I wanted to be mad at somebody other than myself, and he wasn’t helping matters. Slumping down against the wall, I had a better view of my Technicolor carpet. Maybe it was just a little bit funny? After all, I wasn’t much older than Hannah when I started secretly painting on every blank surface I could find in my grandmother’s basement. Maybe Hannah would choose to be an artist like me someday?

Dinner that night was a quiet affair. Afterwards, I slunk up to my room, flipped open a book and tried to read, but too many questions swirled through my mind, making it impossible to concentrate. How did my friends make it look so easy? Karen next door had seven kids, all in different sports. Two of her middle schoolers were also in the local theatre productions. Did she ever sleep? When did she have time to get pregnant anyway?

The truth was, my work defined me. I enjoyed it, knew where I fit in, and knew how to speak the language. I was afraid to give up that feeling of belonging. But it was clear I couldn’t keep up. My children needed all of me, not the back of a mom who was always facing away from them, engrained in work that seemed so much more important. Something needed to change.

After dinner, my mood improved a little. Andrew and T-Rex ventured across the soggy carpet into my room where I was hiding. I noticed he was flushed, but his sweet smile told me he was in a good mood.

“We were quiet,” he explained to me, “and we painted pictures for your studio. I told Hannah you would be proud.”

My autistic son, who only knew how to speak the truth as he saw it, was telling me something I was ashamed to hear. That maybe I needed to take a break and stop splitting myself in so many different directions. I pulled him onto my lap, hugging him as much as he would allow.

“Mommy’s going to take a break from working. It’s kind of like a vacation. Do you understand?” I asked.

Andrew nodded, wide-eyed and solemn. “Then we can do art together.” He touched my mouth with T-Rex’s head—an involuntary kiss—before sliding off my lap and padding back to his room.

Jon crawled into bed much later that night, tugging and yanking the comforter in a loud, wordless statement of frustration. I played possum, lying as still as possible, eyes squeezed tightly shut. Jon bounced around a little more, smacked the feather pillow into shape, and eventually flung the sheets off and went in search of water. I still played possum. The next time he slipped into bed, he moved right up to the back of my head, hovered there a few long seconds before speaking into my right ear.

“I know you’re not sleeping, so you can quit faking it.”

I rolled onto my back, blocking his probing eyeballs with a hand.

“You don’t have to say it, I know I screwed up. This working full-time and trying to be a supermom thing isn’t working out too well, but if I could just get the kids to cooperate…”

He clamped a hand over my mouth and ran the other through his hair, making the long pieces stand up like a deranged artist-serial-killer. It kinda turned me on, the deranged part. I tugged at his hair, pushing it up on both sides into a Mohawk.

“Would you please quit trying to fix everything? Can’t you just be? Life is more fun that way,” he said, biting at the tip of my nose.

Jon’s way of loving me is easy and fluid. He gives me all the space I need to be myself—happy and whole—space I rarely take. A tender and strong man, he cares for me in a way I rejected at first. It was too strange to have someone wrap me up in such a comfortable cocoon of care without strings attached.

“But the carpet…” I said.

“Who cares! Maybe this new mixed-media-pastel-carpet thing you have going will become a new trend.”

I bit his fingers and pulled away before laughing.

“Seriously though, you might want to rethink about how much you’re working right now,” he said, brushing stray hairs from my face and tucking them behind my ear. “It seems to stress you out as much as the kids.”

I rolled on to my back and addressed the ceiling, “I feel like everyone else can juggle work and kids. I just wish I could, too.”

“It’s not forever. Maybe just scale it back a bit?”

It was enticing. I was always running ragged and often had little patience for the kids. I turned towards Jon and slung a leg over his, seeking out the warm spot at the back of his knee to place my cold toes.

He leaned in and kissed me. “You’ll always be my crazy-Type-A-nutball-artist. That’s what I love best about you.” Then he rolled over and yanked the remaining covers to his side of the bed.

We woke to a blood-curdling scream in the middle of the night. I was the first responder, levitating out of bed and streaking into the hallway to find out which room it was coming from. Andrew sat up in his bed—his hair gleaming like a burning bush, his entire body covered in sweat. He squeezed a hand over his belly.

“It hurts all over,” he moaned when I reached his bed.

I could tell by looking at him that his fever had spiked again. Jon knew the routine by now and was already halfway down the stairs to find Tylenol. I stripped him of his wet clothes and turned on the closet light. Even in the weak beam, I could see his lips were swollen and I knew without a doubt that tiny ulcers lined the inside of his mouth. His body looked so frail, unlike the little boy that sat on my lap just hours before and told me he wanted to make me proud.

Within a couple hours, Jon and I were able to get the fever down to a tolerable level—just long enough for the pediatric clinic to open in the morning. When I brought him in, the receptionist must have heard us coming around the corner because she called out for us to go down the hall into Room Three—the soundproof one in the back.

“I swear it’s not the flu,” I said to the pediatrician as I set my whimpering son down on the bench. “Would you please take another look?”

“He’s in school now, right? Is there something going around?”

“No.”

I was afraid he would try to blame his frequent illnesses on school. I was sure it wasn’t school, but if I remembered correctly, it was the third one since he began Kindergarten in September.

“It seems like he gets sick like this every month. It’s always the same,” I said, more to myself than the pediatrician.

For the next few minutes, he tended to Andrew. With gentle and slow movements and a soft voice, he lulled my nearly six-year-old into a trancelike state. Why couldn’t I do that? I thought.

Sitting quietly on the stool in the corner, I watched as he peered into Andrew’s eyes and ears, pausing to listen to his heartbeat and his breathing. I held my breath, waiting for a revelation. When one didn’t come, I started getting twitchy.

“Something weird is going on. Look in his mouth!” I blurted out.

He peeled back Andrew’s lip, revealing a row of blisters, some having already popped, forming lesions that looked like red-ringed cancer sores.

“Maybe he has herpes?” he suggested.

“How in the world would he get herpes?’ I asked, clearly annoyed.

“Let’s test him to rule it out. And in the meantime, I think we just have a case of bad luck. Andrew might be one of those kids that catches every virus that comes by. I wouldn’t worry about it.”

I walked away from his office feeling a little like I did when we saw the neurologist—shocked, confused, and with an ever-growing list of questions. It seemed like every time I visited a doctor’s office, I was talked out of my anxieties, like a hysterical, overprotective mother. Even if it was just a nasty virus, I couldn’t shake the feeling that something was being overlooked.

Weeks later, when Andrew was well, I asked him what his belly felt like that night. He drew two fingers across abdomen in the shape of an X. “There were knives slicing me open,” he said.

I knew he wasn’t talking about a virus.