The Special Light

Terry’s favorite was always macaroni and cheese, but only the Kraft Deluxe brand with the dinosaur shapes. He could eat that golden goodness three times a day. His parents, however, felt he needed more balanced nutrition. For most other children, the introduction of new foods is slow but usually successful. Eva and Greg tried everything they could to entice him to try a carrot, but he just gave it to his brother.

Terry was fifteen months old when he was diagnosed with autism five years ago. His parents were shocked to hear the diagnosis of ICD-10 F84.0. Eva did everything “right” during her pregnancy with him but felt she must have done something wrong. She followed a good diet, exercised, took her prenatal vitamins, and still her youngest child would have a lifetime of issues and very little eye contact. Kyle, just three years older than his brother, was also learning how his brother “worked,” as he put it.

Greg understood what Eva was going through; he tried again and again to reassure her it wasn’t something she did. It’s just something that is. Eva’s mind kept moving in circles, looking for the silver lining that must be there.

“He’ll have a good life. Maybe a little different from neurotypical kids, but he can experience the same things. He just can’t fully communicate it the way others do,” Greg had explained. “He’s a special part of the Baxter family.”

Eva was just sad her baby would never say “mama” or “dada” or look her straight in the eyes. She carried the burden she was to blame somehow. “But why us?”

“Why not us? It could have happened to any family. It’s nothing to be ashamed of. When he’s overstimulated, we take him out of the situation until he calms down. That’s the most difficult thing we must do. That, and the macaroni and cheese obsession.”

Eva looked out the kitchen window watching Terry play in the sandbox. Feeling the sand was something that soothed him. He would pick the grains up, squish them in his hand, and watch the sand fall. Over and over, this repetition could last for hours, and he would never tire of it. His crooked smile and rocking told her he loved that sand.

Living in Jacksonville, FL, gave them the opportunity to enroll Terry in the Jericho School. This school was designed specifically for autistic children with a focus on communication development. Rated as one of the best schools, Jericho accepted Terry in the fall, and they’d been successful at using some cards to help him. The Picture Exchange Communication System (PECS) is separated into phases, and he was having some success with the first two phases of basic items and places. Eva kept a set of cards and a giant poster in his room at home to use with him to practice language skills. She hoped he was language delayed and not fully nonverbal. She read a study out of Boston that said it’s not impossible to get speech later in life. Rare, but not impossible. That prism of hope kept her going.

Eva brought Terry inside and rinsed his hands off. “Would you like to go to a park?” Eva asked. She held out the card with the photo of a park.

As Terry slowly rocked back and forth, he pointed to the park and nodded as he rocked. This counted as a communication, and Eva logged it into a notebook that she kept in her bag. A new place would sometimes frighten him, but Eva tried to gently ease him into new situations so he could navigate his world without trepidation.

Since he was already in his play clothes, Eva and Greg put him in his booster seat in the minivan, and they backed out of the driveway. Mornings were better for Terry since he had not yet interacted much with the world. Every morning was a clean slated for him.

“It’s early Saturday, won’t be many kids out now,” Greg stated. “I saw a new park on the way home from work yesterday. Let’s try that one.” He directed Eva a few streets over, maybe eight blocks from home. Near a small copse of trees was a small park with a giant white sign that read Evans Playground. From the street Greg could see a swing set, a merry-go-round, a couple of rocking horses on giant coils, and a sandbox. “Oh, they even have a sandbox. Terry will love this.”

Parking near the front, Eva unbuckled Terry and led him toward the park. She pointed to the card, and Terry ran toward the sandbox. “Yep, you called it,” she said to her husband. “Let’s catch up.”

There was no one around. Quiet and peaceful, Evans Playground was an ideal place for Terry: limited stimulation, nature sounds, and a beloved sand box. There were a few benches around the park for parents to monitor their children. Greg and Eva sat down on the blue bench and watched Terry digging in the sand.

The sand was incredibly soft. Terry picked it up and watched it go through his hand. He dug in another area, but this time he uncovered something. A small purple bottle or container was there, buried beneath the sand. He poured more sand over it. Terry paused, dug up the container and examined it. It had what looked like a lid over it. He looked over at his parents who were engaged in conversation, distracted by a text message from the school.

Terry gingerly opened the container. A pale green mist emerged from the container, maybe the size of a paper box or tote. Terry was mesmerized; it looked something like a cartoon he loved to watch. The mist morphed into small person, hazy and undulating, but something only Terry could see. His parents could see Terry’s striped shirt from the back and nothing else.

“Hello,” whispered the figure with a sing-song voice. “I can grant you three wishes. Think about this carefully.”

Terry shook his head, stared at the sand, and started rocking.

“Can you hear me?” asked the genie.

Terry nodded.

“Can you understand what I am saying?”

Terry nodded again, but in more of a circular motion

“Can you speak?”

Terry shook his head and picked up more sand.

“Ah. A child with the special light. I see.” The genie stayed low and swirled his essence into a less-threatening ball. Terry picked up the ball and rolled it across the sand. “Very nice,” the green ball said and rolled back to Terry. They played this game over and over, and Terry’s mouth broke into that crooked smile. Very few things made Terry smile, but something about the genie was soothing, gentle, familiar.

“Do you have a name?”

Terry pulled at the tag that was sewn on the inside of the back of all his shirts. The genie swirled over and read it. “Terry?”

Terry nodded.

“Well, Terry, may I be your friend? Only those with the special light can see me. That’s how you found me.”

Terry nodded.

“Very well. Let’s move over to the horsies,” the genie said. His green mist floated over toward the brown plastic horse with the giant handles in its head.

Afraid, Terry didn’t move, but he did want to follow his new friend. He stood up and walked toward the horse. Eva looked up and got Greg’s attention. “Look at this! Terry left the sandbox. He’s headed toward-“

“-the horse,” Greg responded. “He’s trying something new.” In their world, this was nothing short of a miracle. “He’s getting on it!” Amazement and happiness filled their hearts.

The genie was showing Terry how to get on the horse. Then the genie started a rocking motion, and Terry followed his lead. Only now Terry’s whole body on the horse moved in the rocking motion. Giggling escaped from Terry’s smile. The genie nodded, rocking slowly beside Terry to reassure him. “The horsie is nice. Next time we’ll try the merry-go-round.”

Terry rocked for nearly an hour, and then he heard his mother’s alarm from her watch. “It’s time to pick Kyle up from the soccer practice.” Walking over to Terry, she was afraid of his putting up a fight. It always happened when he didn’t want to leave.

The genie looked at Terry and used his sing-song voice, “It’s ok to go now. Your mommy needs you.” Terry nodded and dismounted his horse. “I hope to see you later,”

And Terry smiled.

Eva took Terry’s hand, and the three of them walked back to the van. “I’m so proud of you, Terry. You rode the horse. Did you like that?” She figured it must have been the rocking motion that attracted him.

Terry gently nodded.

“Did he just nod instead of using a card?” Greg asked incredulously.

“Yes, I think he did. It certainly looked like he did.” Eva backed the van out and drove to Samson Park to pick up Kyle. He played on a little league soccer team, and he left practice dirty and sweaty.

His father asked, “Was it a good practice? It looks like you had fun today.”

Getting into the van, he said, “Yeah! I made two goals!” as he buckled in beside Terry. “Hey, Terry. Is that my shirt?” Kyle always made jokes about Terry taking his clothes. Terry just smiled at his big brother and played with the green ball that he found at the park. “Where’d you get that ball?”

“What ball?” Greg asked. “We just came from the park. He must’ve found it there. If it makes him happy, he can keep it.”

They drove home, and dinner time was around the corner. Making macaroni and cheese for Terry and hamburgers for everyone else, Eva shouted, “OK boys. Dinner in 20 minutes. Don’t forget to wash up. WITH soap this time, please and thank you.”

Kyle headed toward his sports-themed room, and Terry took the ball with him to his room with the stars on the ceiling.

“Do you know what a wish is?”

Terry shook his head.

“What do you want?”

Terry understood that command and walked over to the PECS poster on his wall. Terry pointed to the horse. And the giraffe. And the hippo, tiger, and monkey.

The genie morphed into the facial mist again and turned a bit sideways. “Do you want to go to a zoo?”

Terry smiled and rocked.

“I can help you with that.”

Dinner time brought everyone to the table. Hands were checked for cleanliness, and food was placed in front of everyone. Eva said, “You guys aren’t gonna believe this. I just got a text from Jericho; they gave us a four-pack of tickets to go to the Jacksonville Zoo and Gardens. They said Terry’s been such a good boy this year, this would be a nice present for him.”

“Cool!” Kyle said, “Can we go next weekend?”

Greg said, “We have nothing planned for Saturday, and you don’t have practice that day. It sounds like a family fun day. I’ll pick the tickets up Monday at school. Greg looked at Terry and said, “Would like to go to the zoo?”

Terry nodded.

The week couldn’t go fast enough. All Terry could think about was the zoo. His green misty friend rolled around on the floor all week reminding him about all the animals he’ll see. The genie also reminded him about always holding hands with someone in the family and using quiet sounds so he wouldn’t scare the animals. Terry was super excited.

The following Saturday, Eva had laid out a shirt with a lion on it for Terry and helped him get dressed the next morning. Hands up in the air, the shirt slid over his hands, his head, and down to his belly button. Shorts and shoes and he was ready for the day. He knew he was going to see the animals. Kyle peeked in and said, “Hey, Terry, is that my shirt?” making Terry giggle.

The Jacksonville Zoo wasn’t too crowded that day. They started at the front near the bird exhibits, which at first frightened Terry. The green mist stayed near him and calmed him. Terry raised his arms and flapped as if he were a bird. He took his mom’s hand and pulled her toward the next exhibit – the elephants. Gentle giants, one came over to the fence and seemed to wave “Hi” to Terry with his trunk. Terry waved back.

His parents were incredulous at Terry’s behavior. Being with and near the animals seemed to connect with him, engage him on some other level, and he started coming out of his shell a little. He pulled their hands to the exhibits, one by one, and marveled at the animals as they lounged around their enclosures. Sometimes he pulled Kyle’s hand to see something else. They were there three hours, and not once did Terry have a meltdown or panic attack. The animals sensed his light.

The Baxter family called it a day around lunchtime. On the way home, Greg pulled through a drive to pick up some food. Eva planned ahead and kept a thermos of Mac n Cheese in the van for Terry’s lunch. Chicken tenders all around, and the thermos went to Terry. While they were on the road, Terry reached over to Kyle’s bag and took a chicken nugget.

“Mom. Terry took my chicken. Is that ok?”

Eva whipped around, not believing what she just heard. “He what?” She turned back and flipped the visor mirror down. Terry was nibbling at the chicken tender, hesitant but patterned. “Kyle, did you give it to him? Or did he take it?”

“He took it.” Kyle was just as surprised because he knew his little brother never ate anything else. “He liked it. I think. I don’t know.” Then Terry’s little arm reached over and took another. “Yep. He liked it. He took another one.”

Eva’s hand scribbled all these notes into her journal. It was as if in one day he wanted to check out the whole world, but on his terms. She accepted it and hoped it would continue.

Once home, Terry was agitated but in a good way. He smiled, he flapped his hands a bit, and pointed to the glass of water on the PECS card. He drank water on his own. Normally mom or dad had to give it to him and drink along with him for him to stay hydrated. This time, the green mist was beside him, making the drinking motions. It was a great day for everyone.

Once in his room, Terry sat on the edge of his bed as the green mist turned back into a face. “What else do you want?” The genie asked. This was the second of the two wishes. Terry walked over to the poster on the wall once again and pointed to a piano.

“A piano? You want a piano?” Terry pointed again and again, piano. “Wait a minute. Let me check something first.”

The green mist, still invisible to everyone else in the house, floated from room to room. One of the rooms, which once was a guest room, now held much more flotsam and became known as “the junk room.” Against one wall a player piano stood, an inheritance from an aunt years ago. It was covered with other items, clothing, hardware, candles, and the curved case covering the keys was down. The mist returned to Terry’s room through the vent.

“You already have a piano. I’ll show you where it is.” The genie turned into a ball and rolled across the house, Terry following it. It bounced noiselessly against the door to the guest room. Terry opened the door and went in. The amount of stuff in that room was overwhelming. Hands started flapping until the green mist appeared singing, “Shhh. It’s ok, it’s ok.” Terry slowed down and stared at the bed covered in laundry. The genie oozed toward the piano, barely visible. Terry saw it and methodically moved the items off the keyboard lid. He didn’t know how to lift the lid off the keys; the green mist demonstrated using two hands to lift the lid. Black and white keys, all in the same pattern, lay before him. The piano bench had books on it; Terry moved the books onto the laundry and watched them slide toward the pillows. He pulled the bench toward the keys. He was hesitant, unsure what to do. He saw pianos on TV and heard music on the radio; he was familiar with both of those, but not this. He touched a key. It made a sound. He touched all the keys, one at a time, in order, from left to right. He played two keys at the same time, then a third.

He knew the music from his favorite TV shows by heart. The music in his head turned into the keys of the piano. He could see the music. He put both his hands over the keyboard, and they hovered. Terry closed his eyes, rocked a little, and the notes were clearly visible in his head as distinct colors. He put his hands on the keys in the way he saw in his head. Different notes, not in order, but in the order of the musical colors he saw. He played just as easily as sifting through the sand.

Kyle was in his room when he first heard it. “Is that the Backyardigans?” He followed the sound to the guest room and saw his brother playing the piano. He couldn’t have been more surprised if a horse were dancing on the roof. Kyle ran and got his mom who was in the garage. “Mom! MOM! Commere quick! QUICK!” Thinking Terry had gotten hurt, Eva ran inside following Kyle to the guest room. She stopped, transfixed. Her mouth opened.

Terry was playing a slower version of the Peppa Pig theme song with his eyes closed, head gently rocking.

Eva whispered to Kyle, “Go get dad. NOW.” She watched as Terry played song after song as if he’d done this his whole life. Just two weeks ago she struggled with him to take a bath. Now – this.

Greg came down the hallway, listening to the music. He stopped in the doorway behind his wife and son and watched in sheer amazement at what they were witnessing. It was a blessing, it was a miracle, it was magic – whatever it was, it was something they never imagined.

Eva stepped aside and dialed Terry’s teacher at Jericho to explain the situation and find an explanation. The teacher told her that’s not unusual at all. It’s called synesthesia, and it’s when senses get mixed up, like numbers having shapes, colors having a certain feel; in this case, the music itself was visible to him. It was common among autistic people, sometimes referred to as savants when they had a special ability.

The family stood and listened to songs Terry had heard on the children’s shows. He kept his eyes closed, and his fingers on the keys kept moving. The green mist floated around the room, dancing and flitting about as the music came forth from the old piano. Eva made a promise to herself that the room would be cleaned out and turned into a proper guest room making it more easily accessible to Terry.

At bedtime, the genie rolled out from under the bed. “You were fantastic.” He morphed into a face again. “What last thing do you want?”

This time Terry pointed to something the Genie didn’t understand. “Lips? You already have lips. A smile?” Terry kept pointing. “Oh.” The Genie understood. “You want to talk.”

Terry nodded.

The genie said, “This is going to be harder for me to do. The other two wishes were already within you.” He saw Terry’s face look down. “But we can try.”

The green mist rolled into Kyle’s room and motioned Terry to put his hand lightly against Kyle’s neck. Kyle couldn’t feel it. “Hey, bro, whatcha been up to? Getting ready for a concert? Is that my shirt?”

What Terry did next baffled Kyle completely. Terry put his hand on Kyle’s throat. “WHOA, there. No need to get mad. Calm down now.”

Terry looked at the green mist take Kyle’s hand and put it on Terry’s hand and THEN put it against his throat. This time Kyle stayed still. “I don’t know what you’re doing, but it’s creeping me out.” Terry smiled. “Ok, now that’s a creepy smile. What are you doing?” Kyle slowly moved backward on his bed. “Are you feeling me talk?” Terry nodded. “DUDE. Ok!” Kyle took Terry’s hand and placed on the center of his throat. “This is what it feels like to be talking. LA LA LA LA. Mom. Dad. Mom. Mom. Mom.”

Terry slowly pulled his hand away, smiled, and left the room. Kyle just stared at the empty space, wondering if he was right. That was the weirdest conversation he had with his mute brother.

Back in Terry’s room, the green mist came back. “You could feel his voice just like you saw the notes of the music. It’s the same thing. With a lot of practice, you might get a few words out.” The genie wasn’t sure he could grant this one. “But it will take a lot of practice. Do you understand?”

Terry nodded. With that, the green ball rolled back under the bed and waited.

He practiced daily after school, looking in the mirror behind his door. It started with coughing. Terry would cough and feel his own neck. He’d screech – nothing. He’d move his tongue, his mouth, spit, but nothing. Then he screeched at a lower pitch and finally felt his vocal cords move. Lower. More movement. He tried it tandem with his lips. “M.” He heard his own voice and he start flapping his hands. It was tiresome to do both at once – breathe and hold his lips together. “M.” Pause. “M.” He was getting frustrated. “M.” He looked for the green ball under the bed, but there was no sight of it. “M.” Pause. “Ma.”

Now it was HIS turn to be amazed. “Ma. Ma. Ma. Mmmm. Ma.” His eyes grew wide, afraid, and he scrambled off his bed, dashed out of his room and found his mother opening the mail at the kitchen table. He walked up to her, looked down as he swayed, and said it. “Ma.”

She screamed, which startled Terry. “Oh, don’t be afraid. Mommy’s not mad. Mommy’s happy. These are happy tears.” She was afraid to hug him because he didn’t allow people in his personal space, but then he hugged her. Two breakthroughs she assumed would never happen with her baby.

Greg came into the kitchen when he heard the commotion and wondered what the heck was going on. Was it something in the mail? He saw his wife crying and grew alarmed. “Eva,” he said in confusion, “what’s going on? Why are you crying?” Greg got down on his knees to be near his son.

Then Terry said it again. “Ma.” Greg looked at his wife as tears started down his face. The prism of hope had burst open, and Terry repeated it: “Ma, ma, ma, ma.” His face lit up with joy, his voice was given a chance.

The wishes granted, the green mist was now gone, and only the special light remained.