"Don't take it personally. He's shy around new people - it's part of the autism," his mother said and smiled apologetically. I looked around and thought that "shy" might be an understatement. As soon as I had entered the cramped living room, the kid ran and buried himself facedown in a corner of the couch. He was currently in the process of angrily flailing his arms and legs while screaming, "GO AWAY! GO AWAY!" into the cushions. So went my introduction to the little boy who would be my constant responsibility throughout the summer.
His name was Zak. Not Zack, as the registration form from the county department of recreation claimed, or Zachary, as was printed on his birth certificate. When he wrote his name himself, it was always in capital letters: "ZAK." Sometime before I met him, he had made an enemy out of the letter C, probably because of its gentle curve next to the rigid angles of the rest of the letters. I wondered if he realized how his idiosyncratic spelling of his name made him seem even more alien. I doubted if he cared.
Zak was considered a high functioning autistic - he could speak in complete sentences with effort, and understood what was said to him most of the time (although only the most literal interpretation of the words). High functioning or no, anyone who cared to talk to him for longer than a few seconds could immediately discern that he was different. In Zak's case, "different" meant that he was destined to spend the rest of his formative years in special education, and would almost assuredly live out his adulthood either with his parents or in a group home. Zak's view of the world was both beautifully and tragically fragmented. Somewhere in the depths of his brain, he saw some complex underlying pattern to the shards, but that mystery would remain locked inside his head forever. I was just along for the ride.
The summer after my sixteenth birthday began uneventfully. Faced with three months of free time and a high school requirement for 150 hours of community service, I decided to volunteer at a local day camp. When I went to the rec department office to sign up, a dewlapped woman with kindly eyes informed me that all of the volunteer positions for counselors had been filled months in advance. Disappointed, I turned to go, when she said, "Wait...we do have something. Have you ever heard the term mainstreaming companion?"
Every summer, the county sponsored several dozen camps for children, requiring only a nominal registration fee. Because of funding limitations, only a few of these camps were specifically geared towards disabled children, and those camps were far too small to accommodate the demonstrated need. Rather than turn away campers with disabilities, the county started the mainstreaming program. Each camper was assigned to one of the regular day camps, and then paired up with a mainstreaming companion, a volunteer who would act as a one-on-one counselor to assist the camper when necessary and facilitate the child's social assimilation into the rest of the camp.
"The program is immensely popular. Most of the positions have already been filled, but we have had problems placing one little boy," she interrupted herself to pull a thin sheaf of paper from her filing cabinet. "Ah yes, Zack. He's ten years old and autistic. He's likely to be, well, difficult. I don't know if you've ever dealt with autism before - are you sure you're up to this?"
I nodded emphatically as I signed the volunteer form. I had a friend whose younger sister was autistic. I had seen the movie Rain Man several times. With that naive arrogance peculiar to teenagers, I was confident that I knew everything I needed to know about autism.
A week after I met Zak in his home, camp started at a county regional park. It was a gorgeous morning. I turned my face up to a cerulean sky as I waited for Zak's arrival. The children showed up in ones and twos, often accompanied by mothers or fathers. The parents chatted with the other staff members as the kids ran loose, their laughter echoing through the small valley where the camp was headquartered. Finally, I saw Zak and his mother trudging towards me.
"Hey Zak! It's good to see you again. Are you ready to have fun?" I smiled. He did not. Other than the frustration that is their constant companion, most autistics rarely exhibit emotion, especially with people they do not know well.
"It may not look like it, but he's excited to be here," his mother explained. "It's all he could talk about since you visited us. He usually doesn't speak much." She looked sadly at her strange son. The pain of the autism diagnosis may always be fresh for her. She kneeled down and handed him a colorful lunchbox. "You'll be a good boy today, right Zak? Just like we talked about. Listen to Maeve and obey her. I'll be back to pick you up this afternoon, and then we'll go get ice cream." She ruffled his hair. He stood there, unresponsive, examining his shoes. Eventually he mumbled his assent. With a slight sigh, his mother stood up and walked back to her car.
"Zak, do you want to meet the other kids?" That suggestion seemed to grab his attention. He looked up and his eyes widened as he noticed the other sixty campers. Many of them were running and playing tag in the sun, but a goodly number of them were seated beneath the shade of a pavilion, telling jokes and playing go fish. I motioned for him to follow me.
Just before we reached the pavilion, Charlotte, the head counselor of the camp, stepped in our path. She put her hands on her hips and said, "So. This must be our problem child."
"No. Zak," he replied absentmindedly as he gawked at his surroundings. Then he asked, "Where is the schedule on the wall?"
Charlotte's puzzlement was evident. I explained to her what Zak's mother had explained to me - autistic children are prisoners of ritual and routine. Everything must be orderly and events must proceed in a predictable sequence. At home, Zak's daily schedule was posted prominently on his bedroom wall. At school, it was taped to his desk. I told Charlotte that he would need to have a copy of the daily camp schedule ready for him every morning. She balked at the idea, "Well, he can't have one. None of the other campers get a detailed schedule. He'll just have to get used to doing without - he has to learn not to expect special treatment." I was taken aback by her lack of understanding. I tried again to emphasize the importance of the schedule to Zak. He quite literally needed it to function.
As Charlotte and I discussed the issue, the meaning of our words finally dawned on Zak. "No schedule?" he asked.
"That's right, no schedule, Zak. You don't need one," Charlotte answered him.
His face twisted and hardened into a look that I would come to know well over the course of the summer. It signaled the onset of a temper tantrum borne of frustration. Zak threw himself down to the ground and began to kick his legs and scream incoherently. Charlotte relented and ran off to get him a copy of the camp schedule, muttering uncharitable epithets under her breath the entire time. I set Zak on his feet and wiped the snot and dirt off his face as I tried to comfort him, "Don't worry, Zak. You'll get a schedule. You'll have a schedule every day." As soon as I uttered those magic words, he calmed down immediately. His face resumed the appearance of an expressionless mask. Now that the crisis had been averted, I had the time to feel dumbfounded. My training had not covered this.
There was a two hour mandatory training session for all mainstreaming companions, and it was utterly useless in terms of preparing us for the daily trials and triumphs of the position. First, a short introductory period rife with icebreaker and cheesy getting to know you games. Afterwards, we watched a 20 minute video about a boy with Down's syndrome, all sunny smiles and slurred speech. The rest of the first hour was spent reviewing the county's sexual abuse policy. The second hour was devoted to addressing common challenges facing mainstreaming companions. The instructor stood in front of the group of fresh-faced volunteers and began to recite the litany of dealing with disabled children. It sounded like he was reading from cue cards.
"The greatest challenge will be obtaining social acceptance from your camper's peers. Your most effective tool in this endeavor is knowledge. Study your camper's condition and be prepared to explain it in a way that children can understand. Remember that sensitivity is of the utmost importance. Never use derogatory terms to describe the camper. Never use the word 'handicapped.' The word 'disabled' is acceptable, but 'differently abled' is preferred."
"What's the matter with him? He looks normal, but he acts funny. Is he retarded?" asked an earnest little boy with buck teeth and glasses. There was no malice in the question, only curiosity.
I briefly considered telling him that Zak was "differently abled," but quickly discarded that idea with an inward snicker. The intricacies of political correctness are lost on ten year olds. "No, Zak's not retarded; he's autistic. That means that he's smart, but he doesn't see the world the same way that you and I do. It's like playing connect the dots, only his brain connects the dots in all the wrong places. No one really knows what causes it. He was like that since he was born."
"Oh," the boy paused for a moment. "Does he like baseball?" With that, the boy pulled out a box of baseball cards from a small backpack. Zak's eyes lit up, and they happily spent the next hour sorting through them. Like 10% of all autistic individuals, Zak displayed a certain degree of savant ability, and could perform amazing feats of memory. He could look at a baseball card just once and be able to recite all of the player's stats by rote (whether or not he understood what they meant was a different matter). By the end of the hour, the boy was referring to Zak as his "new autistic friend." He showed Zak off to anyone who would listen, asking him for the stats of this player or that.
This type of reaction to Zak was not at all uncommon. I was expecting the worst, but I never saw any of the children tease or shun him. At first, he was greeted with curiosity or confusion, but after a while, the kids treated him with awe. They called him "special" without any tinges of sarcasm. For many of the campers, Zak's novelty wore off eventually, but he managed to develop a few true friendships, a minor miracle considering his inherently anti-social tendencies.
If there were any problems regarding social acceptance, it did not stem from the kids, but from the staff. Many of them exhibited veiled hostility towards Zak. He was the problem child, and they treated him as such. One of Zak's cuter obsessions involved a phrase he had undoubtedly heard from his mother or one of his teachers - whenever the camp successfully completed an activity, no matter how insignificant, Zak insisted on standing up and shouting, "Good job, everybody! Let's give ourselves a hand!" Although Zak had plenty of behaviors that were legitimately annoying, for some reason, his applause for his fellow camper's efforts irked the counselors the most. When the other staff members thought that they were safely out of earshot, Zak became "the retard" and I was "the retard's little helper." As in, "Shh...here comes the retard and his little helper. Quick, hide your hands, or he'll never shut up!"
"It is of vital importance that your camper participate in all camp activities. The process of socialization requires it. If it is a sports activity and they are physically challenged, it is your responsibility to help them. If they are mentally challenged, you must provide guidance. Only in extreme circumstances should they be excused from participation."
Most autistics are extremely sensitive to sound, and Zak was no exception. He loved music, but he hated to hear people sing. Zak had perfect pitch. The discrepancy between what he heard in his head and what he heard coming out of other people's mouths was too much for him to handle. Every other day or so, the camp would hold a large singalong, and I would have to walk with Zak to a secluded spot far enough away that he couldn't hear the children's sweetly off-key voices.
We sat crosslegged on the forest floor. Zak would unhurriedly and compulsively assemble the scattered pine cones into precise rows. I used these opportunities to try to draw Zak into conversation, perhaps to get him to take an interest in his surroundings. It was not an easy task.
One day, during one of these periods that the other campers referred to as "Zak's quiet time", a freight train rumbled past on the tracks located less than a mile outside the park. Its distinctive whistle carried through the trees. "Do you hear the train, Zak?"
"Yes. James Joyce wrote Ulysses," he replied, never breaking his concentration on the pine cones.
"Why does the train remind you of James Joyce?"
He remained silent. "Why?" was a question that he would never be able to answer, because for Zak, the question didn't exist in the first place.
"Your companion campers must learn daily living skills. Be sure to explain the camp rules to the child. You are responsible for consistently monitoring your camper and ensuring that they always display socially appropriate behavior. If they misbehave, issue a warning. If the warning does not suffice, isolate the child from the other campers and explain why their conduct is not acceptable. Keep them in 'time out' until they understand the consequences of their actions."
I tried to keep an eye on Zak every minute that camp was in session, but the necessities of nature sometimes distracted me. On these occasions, I would find another counselor to look after him while I hurried to the small hut that housed the restrooms.
One morning, after stupidly drinking a quart of coffee during my drive to the park, I felt the familiar urge creeping on me. The only counselor who wasn't busy entertaining campers was Rob, a strapping seventeen year old boy who spent most of his time attempting to impress the female counselors with his valiant attempt to fashion a goatee out of peach fuzz. I was hesitant to trust him, as Rob had a penchant for teasing the children in a way that seemed less than good natured. My stubborn bladder left me with little choice, however, so I asked Rob to watch Zak while I used the ladies' room.
As I walked back to the pavilion from the bathroom, I saw Rob and Zak sitting together on one of the many wooden picnic tables sprinkled throughout the area. Zak's expression was one of stormy frustration, and I knew that I had better get there before he let loose with another temper tantrum. I picked up my pace.
"Zak see! Zak see!" he insisted petulantly and grabbed for Rob's clipboard. Every counselor had been issued such a clipboard by the county, and it included the camp roster, emergency telephone numbers, and the daily camp schedule. Zak was enthralled with the clipboards - he could entertain himself for hours by manipulating the metal clip mechanism.
"No, Zak. You can't see it. It's the same as it was yesterday, and the day before that, and the day before that. Give it a rest," Rob said with a theatrical sigh and clutched the clipboard tighter. I had almost reached their picnic table when suddenly it happened. Rob leapt up from his seat with a shrill, decidedly womanish scream and cried, "He bit me! The little fucker bit my finger!"
A hush fell over the other campers as they turned in unison to gawk at Rob. Some young girl whispered what was on all of their minds, "He said the f word." Meanwhile, I tried to grab Zak as he stubbornly attempted to headbutt Rob into submission. The battle for the clipboard was not over as far as he was concerned. I finally managed to wrestle Zak away from the scene and restrain him.
"Zak! You don't bite people! Don't headbutt them, either. When you bite or hit someone, you hurt them. Hurting people is bad!" I chastised him for his behavior, doubting that he would understand me. I was mistaken.
Zak's face crumpled and then dissolved into tears. "I hurt Rob! Rob hurt! Bad boy. Mama says when someone is hurt, call 911. Call 911, Maeve! I hurt Rob." He unceremoniously plopped down where he had been standing, drew his knees up to his chin, and wrapped his arms around his shins. Then Zak commenced to do something I had read about in autism-related literature, but had not witnessed myself - he rocked.
Back and forth, back and forth, Zak rocked rhythmically, using his skinny child's butt as a fulcrum. With every motion forwards, he muttered, "Bad boy." With every movement backwards, he said, "Call 911 for hurting." I tried to comfort him, tried to tell him that Rob wasn't hurt all that badly (it turned out that his grievous injury was bloodless and did not even warrant a band-aid), but it was useless. Zak had withdrawn into himself, beyond the reach of mere words. I watched helplessly as Zak rocked for more than two hours. Eventually, he rocked himself to sleep.
"Your choice to volunteer as a mainstreaming companion should not be taken lightly. The position requires a great deal of patience. At times, it will seem very trying. Do not be discouraged. Your generosity is appreciated - you are volunteering your time to genuinely help someone. Above all, don't forget to have fun."
The afternoon activity for the day was pet rocks. Each camper picked a large stone from the copious number that littered the forest floor, and then painted a face on their chosen rock. I explained the concept to Zak, but he just looked at me quizzically, paintbrush in hand. I tried a different tack.
"First, paint eyes on the rock." He painted the eyes. "Now, paint a nose." He followed my directions. "Now, it's time to paint a mouth," and so on.
As we waited for the paint to dry, I asked Zak what he was going to name his rock.
"Grandma," he replied, without hesitation.
"Grandma? Does the rock look like your grandmother?" To me, it looked like a crudely stylized smiley face with hair.
"No eyebrows. Grandma doesn't have eyebrows. She shaved them off!" he exclaimed with unmistakable glee. I examined his rock - indeed, when I was listing the parts of the face for him to paint, I had neglected to tell him to gift his rock with eyebrows.
"My grandmother doesn't have eyebrows, either. She tweezed them out when she was a teenager," I whispered conspiratorially. I laughed. To my surprise, so did he.
It was the first and only time I heard Zak laugh.
I'd like to say that Zak grew up to be a fascinating young man, and that his disability turned out to be his greatest gift, touching all those who know him. I'd like to say that my experience as a mainstreaming companion taught me about myself, and made me a better person than I was before. I'd like to say these things, but I can't. I do not know what happened to Zak. I fell out of touch with him in a surprisingly short period of time when the summer ended. After spending a few weeks entranced with the foolish notion that I was the next Mother Teresa, I forgot how to find the wellspring of patience that I discovered when I was working with Zak. Now I'm just as short tempered and short sighted as I ever was.
On the last day of camp, Zak presented me with a picture drawn with fluorescent highlighters. When he gave me the picture, he accompanied it with a rare hug. A few days ago, I came across Zak's picture rolled up in the back of one of my desk drawers. The intervening years have caused the fluorescent dye to completely fade. I no longer can remember what he had drawn. The only proof I have of Zak's existence is the words that he scrawled at the bottom of the page in indelible ink: "Thanks, Maeve. See you next summer! Love, ZAK."
Zak, wherever you are, I hope that you are happy. I know that you are loved. Give yourself a hand.