Balloon Days

Elijah's Cup
by Valerie Paradiz

Faced with her two-year-old toddler's precipitous bout with epilepsy and his puzzling behaviors, Valerie Paradiz took a bold and unusual path, coming to terms with and ultimately embracing the strange beauty of her son Elijah's special neurological disorder, which was diagnosed as Asperger's syndrome, a form of autism.

In Elijah's Cup, Paradiz tells the powerful story of her family's struggle with her son's disease, one characterized by social awkwardness, literal-mindedness, and a fixation with particular subjects and interests. Like attention deficit disorder (ADD), dyslexia, depression, and obsessive-compulsive disorder, Asperger's has exploded in diagnosis in the last decade, reconfiguring the known incidence of autism in the population with estimates as high as one in fifty people.

Ever since autism was "discovered" by researchers in the 1940s, the disability has been under the strict purview of professionals in medicine, psychiatry, and education. Like the deaf community, autistics themselves have had little voice in expressing their real experience and needs. They were framed as too "sick" to be conscious of their own internal lives, too "mentally ill" to possess an identity. All this has changed.

Today there is a blossoming movement of autistic self-advocacy groups and alliances that pose challenging questions to the medical status quo. A fascinating, independent expression of another way of life, full of quirkiness, hardship, and humor, has emerged. Elijah's Cup is a provocative and pioneering book that pushes the envelope of what we know about autism. Were Andy Warhol, Albert Einstein, and the comedian Andy Kaufman, whom we usually think of as brilliant eccentrics, autistic? Can these figures serve as role models to this community?

Elijah's Cup offers a refreshing take on mental disability from the perspective of civil rights, history, and the arts. From encounters with the founders of the first civil rights organizations for autistics, who guide Paradiz and her son toward a sense of community and self-respect, and with visual artists, who share with Elijah their special ability to "think in pictures," Elijah reaches extraordinary heights in his sociability and emotional well-being.

In this utterly absorbing and inspiring narrative, Paradiz also reveals her own shadow syndrome, which afflicts many family members of autistics. She is a "cousin," a genetic link to her son's autism. Standing as she does on this cultural borderline, Paradiz is a sensitive translator between two worlds, revealing a groundbreaking insider's view of the beauty of minds hidden in the shadows of autism.

Chapter 8

Because of death or in spite of death — I don't know which — Elijah and I learned about expansion. These were our balloon days, when both of us had grief for lost relations. Temporarily, Elijah had lost me, and I had lost my three dead ones. On balloon days, you learn to expand. You fill up the empty space and, in spite of sadness, discover lofty new dimensions of the self. But not without pain. As if caught in a horrifying slow-motion dream, my attempts to see Elijah were thwarted again and again by the depleting funerals in Colorado and my inevitable dips into depression. Elijah, requiring vigilant routine just to make it through a day, was pressed to his limits by my erratic absences.

The first lesson in expansion is to rid oneself of judgment. Ben's house became Elijah's permanent home base during the funeral months. It had many rooms, and Ben had hired a live-in nanny. I wanted to judge that big house. I wanted to judge that nanny. Their very presence magnified my feelings of guilt and incompetence. I wanted to judge Ben most fiercely of all, as he coolly worked in his spacious office, convinced that I had abandoned all responsibility to our son. Death had turned my life into a mire of emotion, until I could no longer distinguish who or what I was mourning. Often I had to cancel Elijah's visits to Brookside Cottage, and as Ben assumed the new demands of caring for our son, he became all the more estranged toward me.

Emma was exasperated. "You're a single mother with no family in this town! YOU HAVE A DISABLED SON!" She was moving into another well-intentioned rant, designed to remind me of the obvious. Having just postponed Elijah's next visit in a heated exchange with Ben on the phone, I had mumbled something about being a "terrible mother." That got Emma going. "You have no financial support! By your wits you're covering both your expenses and Elijah's at Brookside Cottage, with no help from anyone! It's more than most women can do. You should be proud of it!"

"I miss Elijah, Emma, but I can't do it."

"I know that, honey."

"I need some rest. I'm going to my room to take a nap."

"Good. Try to put it on a back burner. Elijah will be back here again. You'll see."

Elijah was now four and half years old and struggling to learn to use the toilet at school. His teachers decided it was the right time for him to make the transition out of diapers. "Mommy!" he called out one day, sitting on the toilet at school where they had worked out a reliable potty schedule for him. This was the first time Elijah called me "Mommy," and detailed reports of his progress came home in the daybook. The daybook was a diary of notes exchanged between home and all of Elijah's therapists at school. It was crushing for me to read it, because in between the lines I saw that our separations had pushed Elijah to his limit. He had no choice but to expand. "Mommy." The word came out, and I was nowhere to be found.

Elijah developed a special fixation during our months of mourning, and it stayed with him for years afterward. He became compelled by balloons, the same way he had been so mesmerized by the clown's top hats. This balloon fixation became our perilous rite of passage toward renewed stability. It began as a simple ploy on my part: a trip to Woodstock's general store to buy a helium balloon if Elijah was willing to go to the supermarket first. The approach took hold. He had enough passive language to grasp the situation — that is, if I explained and elaborated and talked us all the way through it. He needed constant verbal fortification to keep a firm grip on the procession of environments we moved through, going from home, to car, to supermarket, to car again, then finally, to the balloon store. Each transition inspired dread, but with the balloon as destination firmly lodged in his mind, Elijah was able to leave the myopia of home and venture out into what lay beyond our front door.

"Do you want to go to town and get a balloon?" I ask, strategically ending my sentence with the most compelling semantic content.

"Balloon!" he replies, scooting toward the door. I'm ready for him, with his coat and boots in hand. He allows me to put them on. "Balloon."

"Yeah. But first we're going to the supermarket, then we'll go to Houst's."

Houst's is the name of the general store that sells the helium balloons, but we have to keep things straight. In the car, all the way to the supermarket, I must remind Elijah of our itinerary. Then, once in the supermarket, I repeat it several more times, while pushing him up and down the aisles in the shopping cart and madly grabbing enough food off the shelves to last a few days. Ben is out of town, and Elijah is staying with me at Brookside Cottage for nearly two weeks. It's the longest time we've spent together since all the funerals. Elijah's patience is running thin now, and we've been in the supermarket only five minutes.

"Balloon!" he says forcefully. I respond by calmly reviewing the planned sequence of events.

"First we shop here, then we go to Houst's for the balloon."

We finish the shopping with little incident, then finally drive on to the general store where Elijah has a sophisticated mental picture of what awaits him there. Before I have even opened the door to Houst's halfway, he has quickly shot inside and darted over to a quiet corner where the balloons are displayed in small bins. He scans the countless colors and patterns. Elijah is choosing bright orange today. He holds the balloon in his small hand and stares into it.

"Orange," he softly chants.

The daybook from school reports that Elijah is now labeling three colors appropriately. One of them is orange. This moment in the general store must have deep meaning for him. "Orange," he repeats many more times until I interrupt his reverie with a cue to take the balloon over to the lady at the cash register, who by now has become used to our frequent appearances. For the past week we've been on a binge, coming into Houst's at least once a day, sometimes twice, if our other repetitious schemes at home become too stressfully rigid and we need to replace them with new ones. Elijah stands before the woman at the cash register and does nothing. I lightly touch his arm to prompt him through the next step, which is to pass the balloon across the counter to the lady. She reaches out and takes it from him.

"Thank you! You've made a nice choice today." Elijah waits silently. A few moments pass. He's becoming mildly frustrated by her talking and by what seems to be an uncalled-for delay. "Okay, then," she says, "let's go fill it up." Unaware of his invisible anxiety, which I'm registering as a red flag, she casually walks out from behind the counter and makes her way over to the helium tank. Elijah falls in behind her. He's right on her heels, following this next step of the ritual as if according to some rule book. At the tank, I sidle up behind him, gently pull his body close against my legs, and cover his ears with my hands.

"I'm doing this for the loud whistling sound," I remind him, not wanting to repeat last week's disaster.

The woman fits the opening of the balloon over the spout of the tank and begins to fill it up. Though the high-pitched whistle penetrates my hands and causes him to stiffen, Elijah watches, transfixed, as the balloon looms large and as its color changes mystically from an opaque orange to an almost translucent peach. It bulges so extremely in size that suddenly I'm struck with panic. The balloon could pop and devastate our nearly successful mission! But the lady finally removes it and casually ties it off.

"What color ribbon do you want?" she asks Elijah, who has no answer. He's stimming. He's so taken up with the change in the state of the balloon that he is rendered wordless.

"Any color will do," I answer nervously on his behalf, now feeling a strong impatience rising up his spine as it presses hard against my legs.

"He's shy, isn't he?" the woman remarks, beginning to feel a little awkward about us. She's probably wondering why we keep coming in here every day. Elijah is about to burst now. He's had enough social interaction for the moment. He wants to high-tail it out of here, but he contains himself. I feel the effort in his body. He's committed to that orange balloon.

"You're doing a good job," I whisper as he zeroes in on the woman's busy hands that are cutting a long piece of orange ribbon from a nearby spool.

"This is a nice color. See?" She holds the ribbon up. "It matches the balloon!" When she finishes tying the ribbon to the balloon, she bends down and passes the end of it to Elijah. "Now, don't lose it!" she sweetly admonishes him.

"Lose... it," he answers back. I'm thrilled to the core by this. It's the first time, after a week of practice, that Elijah has spoken directly to the checkout lady.

"No, silly," she corrects him, "I said don't lose it." Elijah doesn't respond to this. "You might want to tie it around his wrist," she adds, cautioning me with this advice. "You don't want to lose that pretty balloon, now, do you?"

I shake my head guiltily "no." Of course not. A lost balloon is grounds for tears. A lost balloon, rising up into the atmosphere never to be retrieved again, means certain tragedy for any child. But little does the lady know that I'm feigning, for Elijah has far different plans in mind.

"Outsiiiiiiiide!" he screams shrilly, startling the woman to the quick and sending her bustling back over to the cash register.

"Okay," I attempt to say with a firmness that I hope will grab his attention, but Elijah is now so stressed he might not make it through the full routine. I bend down close to him without making direct eye contact. It would be too much for him right now. "First we have to pay for the balloon." I say the words clearly, looking into the thin air beside him. He's about to throw himself on the floor and bang his head. The situation is snowballing. "C'mon, let's do it!" In a last-ditch effort, I take his hand up in mine with awkward confidence, and we proceed to the cash register, just barely in possession of ourselves. Then Elijah, with his new balloon in tow, bolts for the exit.

"Here!" I call out frantically to the checkout lady and toss a dollar onto the counter.

"Thank you!" she chimes back. "Bye-bye!" she adds cutely, wanting to assuage Elijah's puzzling discomfort.

"Say 'bye-bye,'" I cue him, darting to his side in the open doorway, realizing painfully in the same breath that I sound as if I'm speaking to a baby who's just learned to wave at strangers.

"Bye... bye," Elijah replies, slowly and arduously integrating his rash movement out the door with his speech. He's entirely out of earshot of the woman, for the door has swung closed behind us. Eventually, he'll say "bye-bye," and "hello," and all the other greetings appropriate to neurotypical discourse. He'll say them at the right time, in the right place, with the right vocal intonation. He'll say them while making the right kind of eye contact and with the right amount of distance between his body and someone else's. But these things are methodically learned hand over hand for an autistic. They must be practiced as a reliable system.

We've landed outside in the center of town on the busy main drag called Tinker Street.

"Let go!" Elijah yells. He wants to release the balloon and watch it fly up into the heavens. After all, it's why we came here in the first place. It's what he's been working up to ever since we left the house.

"Wait!" I interject. "We'll let it go, but let's walk over to the field."

"Let go!" he insists again.

"Yeah, at the FIELD. C'mon." I take his hand and lead him down Tinker Street. The big orange balloon is tugging on its ribbon above us, as we slip around a corner and walk one more block.

Copyright © 2002 by Valerie Paradiz

About the Author

Valerie Paradiz was born in Colorado and has lived and worked in Germany and Japan. For several years she has taught literature and writing at Bard College in Annandale-on-Hudson. She lives with her son in Woodstock, New York.