Annicchiarico, Courtney

Finding All the Pieces

Courtney Annicchiarico

By the time Stacy was fully awake, she was in the hall heading towards Perry's room. Again.

“Hi Buddy,” she whispered. He was quiet now. Did he go back to sleep? Perry's eyes popped open and he screamed again. Stacy knelt down beside her son's bed and placed a hand on his cheek. “What's the matter, little bird?” she whispered, her voice shaking. It was a rhetorical question. It was all a guessing game, hit or miss, when something bothered Perry.

“Not you, Mommy!” Perry cried, his little face red and wet with tears.

“Daddy's sleeping, sweetheart. Mommy can help you.” Stacy held her breath as she brushed Perry's hair away from his face. He would scream more for his father, she knew, refusing a substitute since Mark usually handled bed time. Stacy looked behind her at the door, hoping she wouldn't have to wake Mark since he 'd already been up twice. Perry started squirming. She breathed out slowly. “Do you need to go to the bathroom?”

“Yes!” Perry yelled. Stacy stood up and peeled Perry's blanket back, not happy at being yelled at by her four-year old but relieved he wasn't demanding Mark.

“Let's go then.”

Perry shuffled to the bathroom, Stacy close behind him. When Perry had finished, Stacy settled for squirting hand sanitizer in his hands when he refused to wash them. Back in his bedroom, Perry stood by his bed looking in Stacy's direction. “Get back in bed,” Stacy prompted. Perry climbed into bed and stretched out as she pulled the blanket over him. Perry immediately started squirming. Stacy quickly pulled the blanket down and inspected Perry's pajamas to make sure there were no wet spots caused from a wayward drop of hand sanitizer or water from the bathroom counter. Perry couldn't stand getting his clothes wet. There was nothing.

“Are you warm?” Stacy pulled the blanket off the bed. It was little more than a sheet but the room was warm. “Do you want to sleep uncovered?” Perry settled down. Stacy turned away.

“Mommy!” Stacy was back by her son's side before his bellow of outrage ended. Perry's eyes were clenched closed to punctuate his fury. “It's not RIGHT!” Stacy covered him back up and his screams hit a new register. She took the blanket back down. “Mommy!”

“Perry, do you want your blanket?”

Past devastation, Perry bellowed “YES!” She covered him again and looked away before Perry could see her cry as he immediately thrashed at the blanket to kick it off. “Honey,” Stacy said as she knelt down, dodging her son's flailing hand. “I'm trying to help you.” Perry pushed hard against Stacy's chin, forcing her head sharply back. Scolding him would do no good. She took his hand and gently pulled it away.

“You said you want your blanket and you have it. Do you want it off?” Perry continued to kick and thrash. Stacy tugged on the already displaced blanket. The frustration and accusation in Perry's eyes were palpable. He wailed.

Stacy sat back on her heels and stared, her eyes wide, darting from the blanket in her lap to her helpless, out-of-control son. Suddenly, she sprang to her knees. “Perry! Do you want a different blanket?”

Immediately, the little boy stopped his protests, looking at her, and said “Yes.” Perry's transformations from tantrum to calm always disarmed Stacy. The only evidence of his former violent distress was that his cheeks were still red and wet.

Giddy with relief, Stacy kissed his temple. “Okay, little one. Mommy can do that. Next time, tell me.” Stacy left the room and returned a few moments later with a lightweight knitted blanket. Perry closed his eyes and hugged his pillow. One breath, two breaths. Perry opened his eyes.

“It's not right,” he said, the picture of patience and calm now. Stacy left and came back with a second and then a third option. Finally, she returned with a moderately heavy quilt.

“This is the last option, kid,” she said, smiling down at him. She threw it up in the air while holding on to one end so that it parachuted down over her smiling little boy. Perry took a deep breath, snuggled deeper into the blanket, and looked up at Stacy.

“Go away, Mommy,” Perry said. There was no malice in the statement. Stacy was just being dismissed.

Back in her room, Stacy slipped into bed. Mark turned to face her. “I think I heard most of it. Are you okay?”

“I'm tired of analyzing Perry's every personality trait,” Stacy said tiredly, picking up the large stack of screening questionnaires she and Mark had been filling out, from her side table. “I'm going to be happy to hand these in tomorrow. It’ll feel good to get an answer in a few hours at the evaluation.”

Mark sat up and gave her a hug. “Do you really think Perry's autistic?"

Stacy looked at her husband. He was staring down at the stack of papers in her lap. They had been checking boxes and filling in circles for weeks, assigning scores to indicate how Perry communicated, played, and interacted with peers. Or, more to the point, how he didn't. “I know you're scared. I am, too. But, yeah, I think he is.”

* * *

Stacy and Mark were greeted by a bubbly young woman at the receptionist's desk. “Hello, Mr. and Mrs. Peterson,” she said, extending a hand to both. “My name is Morgan Oliver. I'm the clinical social worker who will be conducting Perry's evaluation today.” Before either Stacy or Mark could respond, Morgan addressed Perry. “Hi Perry, My name is Miss Morgan. I have a lot of games I''d like to play with you. Does that sound okay?”

“Will we be meeting with Dr. Stillman today?” Mark asked.

Morgan shook her head. “This is a bit of a process, I'm afraid.” She smiled and added, “Why don't we go to the Rainbow Room in the back so we can talk.” Stacy and Mark looked at each other and nodded. This wasn't what they had expected. The four of them passed through double doors and entered a hallway. Perry stopped at a large window and bobbed up and down on his toes as he peered through the glass. “Do you like the flowers, Perry?” Perry didn't answer. He pressed his lips to the window.

“Perry,” Stacy said, “Miss Morgan asked you a question. Do you like the flowers?”

“Yes,” Perry said cheerfully. “Yes, yes, yes,” he sang.

“Okay, Perry,” Mark said, nodding at Morgan. “Lets go see where we're going next.”

Perry didn't move.

“Let's count to five then start walking, okay?”

Perry gave no sign of hearing his father but when Mark reached five, the little boy started walking without complaint.

The Rainbow Room was a large space that had bounce-upon balls, scooters, a tricycle, and a square swing with a platform large enough for two children. “Perry, “ Morgan said, placing a bin of cars on the floor, “You can play with anything you want while I talk to your mom and dad over there.” She pointed to a nearby table and chairs. Perry ignored her and continued making funny faces in a mirror on the wall.

“Please take a seat,” Morgan said to Stacy and Mark. Sitting across from them, she picked up the clipboard that had been on the table. “The evaluation I am going to do today will have two parts: First, we'll do the parent interview. I'll ask you some questions, listen to your concerns, and review your answers on the screening tools I see you've brought with you,” she said, nodding towards the large manila envelope tucked under Stacy's arm. “While we're doing all of that, Perry can play with any of the toys we have in the room. I'll be taking notes on how he plays and his behavior when he's not engaged. During the second part of the evaluation, I'll be playing with Perry, asking him to do certain tasks and answer some questions, so I can see for myself what you probably already see. Does that sound okay to you?”

Morgan's gentle tone hadn't changed from when she had been addressing Perry. Stacy took a deep breath and tried to relax her hands in her lap. “That sounds fine.”

“Okay,” Morgan said, tapping her clipboard and forms, “Walking through the halls to this room, I noticed that Perry bobbed up and down on his toes. Does he do that or other repetitive movements often?”

“Not too often. His toes, I mean. He does flap his arms, though, just like a bird,” Stacy said pulling her papers out of the manila envelope. “I marked that down on one of these. He does that a lot when he's excited. He spins, too.” Stacy paused, then beamed before adding, “He spins so much I've called him my tornado for years.” She glanced up at Mark and squeezed his hand. He did not react. Her smile faltered and she looked down at her hands. “We thought it was funny. We didn't know.” She coughed and sniffed.

Morgan's tone was light and kind. “Mr. Peterson, you counted to make Perry follow us. Is this something you do often?”

Mark nodded. “Perry doesn't like activities to end. He gets upset when it's time to leave the park or come to dinner if he's doing something else. Stuff like that. I mean,” Mark stammered, “I guess all kids do. But Perry gets really angry. More than other kids his age.” He took a deep breath. “But, if we tell him it's time to go after he does something a certain amount of times--like going down a slide two more times--or once we get to a certain number, he's usually fine.”

Morgan flipped to an empty form, filled in a few circles, jotted down a few notes. She flipped to a different form. “Why don't we talk about the events that brought you here? Did Perry's pediatrician recommend an autism screening?”

A whoop of laughter rang out and the adults looked over to where Perry was sitting cross-legged on the large square swing. Stacy turned back to Morgan, bit her lip. “No, not at all. My husband and I are initiating this. To be honest, when I brought Perry in for a visit to get a prescription and referral for this evaluation, his pediatrician wrote the script but seemed to think there was no need. She called Perry's name and when he looked at her, she turned to me and said he was fine.”

“That's not so unusual, unfortunately. Perry's pediatrician probably wanted to see if he would make eye contact because most children on the spectrum struggle with it. But many pediatricians don't understand that the handful of known autism 'red flags,' like lack of eye contact, can be manifested in countless behaviors and to different degrees. Autism is a spectrum disorder.” Morgan drew an umbrella in the margin of one of the forms. “There's classic autism, Aspergers, and PDD-NOS. But they're all forms--or shades--of autism. Based on our short time together, I'd say that Perry can make wonderful eye-contact at times. But, at other times, does it seem like he's in another world?” Morgan paused and when Stacy and Mark both nodded, she continued. “Really, no two children are the same or act the same, whether they are on the spectrum or not. So, what observations did you make that concerned you enough to come here today?”

Stacy took a deep breath. “Well, a friend of mine suggested that Perry might be on the spectrum several months ago. She gave me a pamphlet that listed red flags but I dismissed it.” Stacy smoothed her hair and sat up straighter in her chair.

She held up one finger as she ticked off Perry's behaviors. “Mark and I assumed that much of Perry's behavior, like spinning and repeating sounds, was age appropriate. Maybe not as appropriate as it had been a year or more ago, but not unheard of either.”

She raised another finger. “He was speaking. Not in full sentences or many phrases like his peers, but he used words.”

She raised a third finger. “Behaviorally, he was on the stoic side, he still is, but he smiled and was joyful, too. Sure he had tantrums, terrible wrathful tantrums, but he was mostly well-behaved and sweet.”

Stacy raised a fourth finger. “Social deficits are a huge red flag.” She paused , lowered her hand, and squeezed Mark's. “I've been taking Perry to play dates and story times since before he could crawl. As a toddler, he didn't really play with other children or join in games and songs, but a lot of them did their own thing as two- and three-year olds. He didn't become more social in preschool but we just thought he was a bit of a loner.”

Stacy paused until Morgan stopped writing. “But then about seven weeks ago, Perry had a bad cold. He was sitting on the couch and he reached up for me. I thought he wanted a hug.” Stacy coughed, trying to disguise the tremor in her voice. “But he didn't give me a hug. He picked up a lock of my hair and wiped his nose with it, just like he was using a tissue. I jumped up and started to scold him but I stopped as soon as I saw Perry. He looked so confused, like he had no idea what he had done wrong.”

Stacy looked at her son before continuing. “He's very smart. He knows what hair is and, despite his tantrums, he's a good boy.” Her lower lip quivered and she coughed again to cover up a little sob. “I figured, if it wasn't indicative of an intelligence issue or an act of defiance . . .” Stacy looked at Morgan, daring her to disagree. “There has to be another cause.

“I contacted Perry's pre-school teacher and asked if I could sit in class and observe Perry for a little while. She readily agreed. The students were being called to the rug for story time when I walked in and sat in the back. First, the girls were called from the main table in the room. Then, the boys. But Perry stayed at his seat, oblivious to where his teacher was or what he was expected to do. His teacher called his name twice and Perry turned. But he didn't move. She asked him what time it was and Perry said it was story time. But he still didn't move. Then she told him that she had called for all the boys to come to the rug. She smiled and asked, 'Are you a boy?' Perry said 'yes.' Then she asked him to come to the rug. Perry sort of startled and giggled, jumped up, and carefully pushed in his chair. Then he went to the rug. That's when I realized how many prompts I gave Perry all day long to keep him on task. I do it without thinking, always have. Sitting in that classroom was the first time I had ever seen Perry in a group setting where I wasn't by his side urging him on. Suddenly, a few of the red flags that didn't seem to apply to Perry, did. The class went on to sing some alphabet songs on the rug. One of the songs ended with, 'Boo!' All the kids squealed and laughed for a few minutes, Perry included. But then the rest of the class started singing the next song and Perry continued to yell, 'Boo! Boo! Boo!' He even scooted in front of another boy and yelled 'Boo!' in his face. The little boy didn't even flinch. This has happened before! I remember thinking. Perry's like an alien in the room. I called Mark after I left the classroom. I was devastated. I couldn't believe I had missed all of this but . . .” She shrugged heavily. “I did. I started reading more about the autism spectrum and a friend recommended I come here.

“Did Perry's teacher say that behavior was typical for him?”

“No.” Stacy smiled weakly. “She said that was a good day.”

The rest of the parent interview was a blur. Morgan went on to ask Perry questions. It took several tries to elicit responses and, although Perry always answered, the answers weren't always to the questions being asked. It became clear, since he was able to identify pictures on flash cards that his vocabulary was far beyond his age-level. He knew a lot of words but his ability to use those words to convey his thoughts, was on par with an 18-month old. She asked Perry to walk through obstacle courses and assemble puzzles. He needed prompts but he cheerfully did his best.

A week later, they returned to meet with the psychologist. Even though they suspected it, and had prepared for it, Stacy still cried.

Perry was autistic.