Charles Brandon Rapp McGuigan

Words and Deeds

By Charles McGuigan 07.2020

From the time he was an infant, Charles had the bluest of eyes, luminous and wide, and they scrutinized the world around him, and he stored away all the images he had gathered. Out on walks with him, in a stroller, or on my shoulder, he would watch everything around him, studying all things with care, and something like devotion. And well before he uttered his first words, his ears were trained on every conceivable noise from the faintest tick of a distant clock that no one else could hear to a clap of not-too-distant thunder that could deafen the deaf. He absorbed these things, not so much as a sponge, but as a strong suction that pulled in the entire world. By paying such careful attention to everything around him, including human emotional responses, Charles became extremely empathetic. He also developed an uncanny ability to synthesize experiences and sensations, and began to tell stories through paintings and drawings, through music and words. These things became his passion.

Back in 2003, shortly after my son’s second birthday, I began noticing things about little Charles that didn’t seem quite right. I was reluctant to talk with his mother about these behaviors, but they were there all the same. They were small things, insignificant, yet they seemed symptomatic of something dire. When I’d pick him up from his mom’s house over in Lakeside, I’d notice the same kinds of behavior there as I saw over in our Bellevue home. Of course, his mother, Diane Rapp, had noticed the same things.

Charles would line up his Hot Wheels—trucks and cars—front bumper to rear bumper, place them in a line so straight and unwavering it seemed he had used a ruler to achieve the effect. And he was obsessive about it. God forbid one of them got out of line: A total meltdown would follow and there was no consoling him then.

Of his hands, he would make puppets that seemed to be talking to one another, sometimes frantically, and he would follow their actions closely with his eyes, squinting, three inches away from them, as if to discern deeper meaning in their seemingly random movements.

Plus, he wasn’t talking, and he was slow to walk. His pediatrician said just wait and see; his hearing was fine, his vision checked out. That was reassuring, but I still had my doubts.

Many people I talked with about my son’s development said the same thing, “All kids develop at different rates.” And this: “Boys are slower than girls.” My daughter, Catherine Rose, five years Charles’ senior, had matured much more quickly. She was walking by the time she was a year old, talking non-stop by age two, dressing herself before she was two, coloring profusely just over a year and so on. There was no comparison between the two; they were worlds apart.

Charles would also do uncanny things. One afternoon in the late winter, a freezing Saturday crusted with dirty snow, as my kids and I played on the living room floor, secure in the cocoon of our home, Charles stacked up a half-dozen soft, foam rubber puzzle pieces. I didn’t notice anything unusual about the order, but Catherine called my attention to it.

“You see what he did?” she said.

I shook my head.

“They’re the colors of the rainbow,” she said. And sure enough he’d stacked the puzzle pieces in their ascending prismatic order—violet, blue, green, etc. I thought, perhaps, it was an accident, so I took the stack apart, scattering the puzzle pieces across the floor, and once again Charles mimicked the spectrum when he reassembled them. He was just over a year old at the time and I don’t think he’d ever seen a rainbow or shattered light through a prism, yet he seemed to understand the sequence.

In the corner of our living room, behind the front door, stands a carving of a hornbill, its feathers black and white, its bill, eyes and feet a garish orange. It was a gift from a friend who had traveled to Guinea-Bissau. Charles when he was not quite two, would, on unstable legs, approach this wooden bird, his approximate height, stand eye to eye with it, pet its head, look deeply into those orange eyes as if he might elicit a response, make this piece of senseless wood communicate with him. He would do this every day; it became part of his routine, his ritual. His tiny hands stroked the wooden torso, the baby skin of his fingers sometimes snagging on the rough etching that described the feathers. And he would stare into those dead wooden eyes, fifteen, twenty minutes at a time, trying to coax a response, but the bird remained mute, at least to my ears.

During a summer power outage, late at night, not a wisp of air moving through our house, the kids and I lay on the bed, drenched in sweat, and I read to them by candle light and oil lamp. I turned the pages slowly so Charles could see every picture in “The Clown of God”. By the time I was finished, Catherine had already drifted off. I blew out the candles, turned down the oil lamp until the flame died. Minutes later, Charles sat upright in bed and clapped his hands once, saying, “Lights on.” And immediately the power, which had been off for three days, came on and with it the lights, fans, air conditioners, refrigerator and aquarium pump, so the house again began to hum with a satisfying electric life. I wondered if his brain had somehow perceived the motion and energy of electrons along their copper conduits nanoseconds before the power was restored. Of course, it could have just been a coincidence. But still.

My mind lit up with the word autism. I was familiar enough with the disorder, having written a series of articles in the early nineties about it. Charles seemed to have some of the red flags going for him, but not all of them. For one thing he was always extremely affectionate and easily made eye contact with everyone he encountered. Sometimes he would look so deeply into a stranger’s eyes that they would be taken aback as if he had crossed an invisible boundary, had invaded a personal space.

A woman behind us at the checkout counter in Ukrop’s once said to me, “What he looking at?”

I considered her question. “You,” I said, looking into her eyes.

“Well he shouldn’t look so close,” this woman said.

“That’s his way,” I told her, as she gathered her change, keeping her face down, away from the stare of my inquisitive child.

When he was about three and a half years old, Charles began seeing a speech therapist, and the results were palpable almost immediately. I had been watching him very closely, would spend hours in the evening reading to him, sometimes as many as twenty children’s books at a setting. He followed the words closely, was insistent on looking at the accompanying pictures, and what’s more he could remember the plot lines and would ask questions about the characters.

One Sunday afternoon in the spring, when Catherine was off with her mother, Charles and I sat on the living room floor and talked. I asked him what he meant when he used his hands. I’d always assumed these were just random motions. Boy, was I wrong. A splayed hand held upward meant “tree”; a splayed hand held downward meant “bird”. A fist with the thumb protruding was the symbol for “truck”. The fingers of his left hand drawn rapidly across is right wrist meant “running”. He went on and on for hours, explaining in detail what every hand movement meant. I listened and made notes and rudimentary drawings. When it was all over—about five hours later—I had 218 separate hand symbols describing 218 different words. A few days later I quizzed him on the hand symbols and their meanings remained consistent. I was amazed and relieved.

A week later, I met with two social workers at the child development center Charles attended at the time. They had been observing Charles and had come up with a preliminary diagnosis. I waited. “We believe Charles has high functioning autism,” one of the women told me. “Or Asperberger’s syndrome,” said the other. For a moment, I was speechless.

Later, I took Charles to see Dr. Pasquale Accardo at Children’s Hospital. He spent well over an hour with my son, putting him through a battery of tests, asking him scores of questions. At the end of it all he told me Charles had clearly fallen under the rather wide reach of the autism umbrella, but at its very edge. He might also have Attention Deficit Disorder. Charles, it turned out, had the intellect of someone twice his age, but didn’t have the ability to express his thoughts and feelings, which is why, as Dr. Accardo put it, “He created his own sign language.”

Late at night, I would sometimes look at the faces of my children in slumber. I would look at Charles, his eyes shut against the world, mouth open, head resting in the cradle of the pillow, peaceful, content, his mind finally at ease. Some nights as he slept and dreamt he would laugh out loud. “I love you with all my heart and soul,” I would say to my son. There were times that he roused briefly from his sleep and said, with his eyes still shut, “I love you too, Daddy.”

We were lucky to get Charles into Holton Elementary School.  No school I know of was ever run better. All thanks to David Hudson and his hand-selected teachers and other staff. The first teachers Charles had there—Christal Mark and Ricky Gay—taught him for a total of three years.

Viewed through the right lens, life reveals itself as an unending series of victories, each one a call for celebration. Just consider the eruption of spring out of the sodden earth, transforming the world overnight from monochromatic blur to polychromatic mural. Think of the first steps your son or daughter took, or the first words he or she uttered. The way your legs respond when you take a walk, ride a bike, jog a distance. How your eyes capture every visual event in the universe like a camera, only better, depositing each image instantly in the archives of the brain to be recalled in less than the blink of an eye in dreams or reveries. And how those small drums within our ears allow us to hear every conceivable sound—from the subtle nuances of the human voice to the blessings of all music. Each a victory, a small accomplishment, worthy of acknowledgement and celebration. That was always the approach of Christal Mark and Ricky Gay.

On a Tuesday morning twelve years ago, I walked my son Charles—as I did every morning when he was with me—through the rear doors of Holton Elementary. Once inside, we were greeted by safety guards, lime green bands crossing their chests, who lined the halls at intervals, keeping the trooping bands of kids in line, saluting them with a very formal, but pleasant, “Good morning.”

And at the door to the classroom, Christal Mark and Ricky Gay welcomed my son. Charles wangled out of his backpack, unzipped it, removed a marbled notebook and yellow folder, placing them in a wire mesh basket, and then zipped the backpack up and hung it from a hook in his cubby. He took his seat at a small table across from Charles McIlwain.

That was an extra special day for the children in the classroom: in a little over an hour they, and students from Ms. Prentiss’ room next door, were headed over to the Ukrop’s Supermarket at Brook Run Shopping Center for a field trip.

“The trip to Ukrop’s will correlate with a number of SOL requirements,” said Christal. “In mathematics we’ve been working with buying and selling and coins and their value. We’ve also been talking about community workers. We’ve been categorizing in language arts and reading, so this is a good opportunity to see how things are arranged and categorized.” She also has planned a scavenger hunt for her charges so that they’d have the opportunity to identify six items from dairy, six items from produce and so on, but time would run out before the kids get to go a-scavenging.

Giving back is what Christal and Ricky do for a living—both would tell me at various points during a series of interviews I did with them. Teaching, as you might have guessed, is not about money, it’s about molding young minds and teaching critical thinking. The hours both Ricky and Christal had put in each day, and the intensity of the work they performed, blew me away, and does to this day.

Our experience with every teacher at Holton was the same. They were all committed to the well-being and education of their charges. David Hudson enforced a policy of “no bullying”, and it was a success. Middle school proved to be the exact opposite.

Those years frankly are something of a blur today. There was constant fear on both my part and his mother’s part that we would receive a phone call from school about Charles.  For months, he was bullied so severely in middle school by students and at least two teachers, that at the end of it, when his mother and I removed him from that school, he was diagnosed with post-traumatic stress disorder.  Because of the tangled bureaucracy it took months to get Charles a homebound instructor.

Ultimately, Charles was assigned a string of homebound instructors by the schools so he was able to pass both seventh and eighth grades with flying colors. He loved completing his assignments. During that entire period of time, he was forever by my side, or his mother’s. Even when meeting with the homebound instructor at an area library, one of us had to be present.

Charles and I made a home and a workplace out of Stir Crazy Café every day of the week thanks to the good graces of the owner and her entire staff of kind souls. As I worked on my laptop, Charles wrote and read, and created works of art, things he gave away freely to whomever wanted them. I cannot tell you how hard this was on Charles. Every day throughout the school year, he would see his friends come through the front door of Stir Crazy when school let out.  It was good to see them, but it was a stinging reminder that he was still not in school. They had lives between eight and three that he was excluded from, and even though he rarely mentioned this the pain on his face was readable as block print.

During that time, though, several wonderful things occurred. For one thing, Charles began seeing a gifted therapist named Dr. Pam Waaland who treated my son for post-traumatic stress disorder and other issues. We would also get pro-bono help from Valerie Slater, who was both advocate and lawyer for the disAbility Law Center of Virginia. It was through her wrangling with city bureaucrats and attorneys that Charles was finally given private placement. But that was still a long way off.

Something else happened in that period when Charles was still being bullied in the schools that served as a life preserver for him. Charles was always a sweet child, unable to understand why anyone would hurt another. He just didn’t get it, I’m happy to say, and still doesn’t. But things were hard on him at that point and the smile that had frequently played across his face was gone. That is until he began taking classes with SPARC’s Live Art. It was a game changer. From the first class at SPARC it became my son’s sanctuary from the hell he endured in classrooms and hallways, cafeterias and gyms for days on end.

I spent virtually every Thursday night that year with my son Charles in Live Art’s Soul Sound class. There were two dozen kids, and a total of eleven instructors and assistants present. In those early weeks, the kids were getting to know one another and their teachers, and almost immediately they felt at ease, were comfortable, and began to learn the rudiments of music, of rhythm and tempo. From the time he was just months old, Charles responded to music of every description, so Live Art became the best of times for him.

The moment my son and I first stepped foot in that studio, we both noticed something that was unfamiliar. There didn’t seem to be any differences among the vast array of students there. “We call Live Art kids, students of all abilities,” said Erin Thomas Foley, the woman who came up with the idea for Live Art. “When class starts we don’t talk about who’s typically developed, or who may have special needs. Once our classes start, they are all inclusive classes. End of story. We simply make sure we have enough staff in the room to assist every ability.”

 When I mentioned to Erin that one of the students in Soul Sound, who, as they say, presents with Down syndrome, excels beyond his peers, she said, “And do you know why?”

“Because nobody’s judging him,” I suggested.

“Yes,” said Erin. “But it’s more than that. It’s what music does and color does and movement does. That’s what it does for the human spirit. It transforms us.”

Later, when I talked with Joshua (Josh) Small, a local musician who was a teaching artist at Live Art, he likened the place to a church.  “It’s a sacred place in a sense,” he said. “In the way the program is set up. And everybody there has common behaviors and desires. It’s a place to be validated. You can’t fail here. It’s kind of an art church.  The people here are in this place because they feel strongly about expressing themselves. We are all here to support each other. That is sacred, and no one would want to break that trust.”

Part of me wished then, and now, that principals in public schools from across the nation would sit in on sessions of Live Art and meet the teachers there and seek the advice of Erin Thomas-Foley, so they might learn how it’s done, how you ensure a child’s safety, how you nurture, how you teach humanity along with the humanities. Something the current Secretary of Education could learn a thing or two about. Because my son, Charles, who was so damaged by bullying that he was then being treated for a disorder that afflicts soldiers who return from the forever wars in Iraq and Afghanistan, asked me one simple question, and he asked it over and over again: “Daddy, why can’t schools be like Live Art?”

I had no answer then, and I have no answer now.

Charles has always had a close relationship with his two sisters, Miranda and Catherine. They’re protective of him, and love to needle him, which he returns in kind. They have consistently reminded me of lion cubs at play, who learn through their play how to protect themselves.

Catherine has spent hours with Charles teaching him what she knows about art. When he finished a painting several years ago of a sun with rays like fingers, pulling itself over the horizon of a large body of water, Catherine was reminded of Picasso. And I could see that. “I can’t believe he did this,” she said. And then mentioned the three bicycles he drew over a road map. “He really has talent,” said Catherine.

From the time they were both very young, Charles and Catherine loved to travel, and every summer whether we could afford it or not we packed the JEEP or the CRV so tight there was scarcely room for us. Charles loved it though, and told us years ago that he liked it to be “snuggly”, because he would be in the backseat surrounded by a few stuffed animals and luggage and coolers, with a pillow under his head and a blanket wrapped around him even when it was hot which it frequently was (I don’t think we’ve ever had a car with air conditioning that blew cold for more than a month). Over the years, we have scoured the coastline from Prince Edward Island to Key West and out to New Orleans, visiting more than 160 beaches.

A week ago, while I was interviewing Charles, I asked him what his favorite destination was. “Maine,” he said. And then I mentioned the Carolinas and Florida. He remembered a great white heron who would greet us every morning as we went fishing from the wharf behind a shack we rented on Islamorada in the Florida Keys. We would catch pinfish and toss them over to the crane. He would swallow each one whole, but never ate more than seven in one sitting. “I guess I like all the places we’ve been,” he said. “I like that it’s been us going there, and what we’ve seen together.”

Charles is the best of traveling companions. He doesn’t whine when things go wrong. “When that happens,” he told me once. “That makes it an adventure. Remember Ocracoke.”

We were on the final leg of an odyssey from Maine down to lower North Carolina. We’d eaten at Pigman’s Barbecue, fished for a couple hours on the Bonner Bridge, then headed down to Hatteras Village. By the time we board the ferry it was nine o’clock.

We were the last car off the ferry, and began the 13-mile drive down to the village of Ocracoke with its welcoming lights. Halfway down Route 12, I pulled over to the sand and gravel shoulder, turned off the lights, and Charles and I entered the dark night. There was no trace of light and the stars were bright and the planets steady in their streams of colors.

“You can see the Milky Way,” Charles said. He was right.

In Ocracoke, we tried every motel and hotel and B&B, and there was no room at the inn. I drove down to the ferry landing on Silver Lake, on the leeward side of the island.  I talked to a sheriff’s deputy there and she told me we could just sleep in our car, if we liked, that she’d be on duty until seven, and watch out for us. I moved the car over to the information center and began talking with a bearded man who worked with the ferry service. I opened all the doors of the car, including the tailgate. I opened the sun roof, and an ocean breeze was coming off the southwest, so I realigned the car, drop both front seats back to their lowest position and Charles climbed in and was sleeping within minutes. I talked with the ferry guy until one in the morning and then returned to our Honda CRV, a car I had told Charles on numerous occasions we could sleep in if we had to. My son woke, and I told him the ferry man said tonight was the peak of a meteor shower. We stared into the night skies, among the brilliant haze of stars, through the open doors of our car, and through the sunroof, and all through the night, for the next three hours, we saw shooting star after shooting star, quick slashes of pale green light like an ocean plankton, streaking the sky and gone in an instant, my son and I saw this, and we lost track of how many we had seen after we counted forty. And then we drifted into sleep, with the moist, now cool, breeze flowing over us, as if we slumbered in a bed of clouds, and later, we were the first to board the ferry southward, an hour after a spectacular dawn, and neither of us had ever felt more refreshed, even though we had slept for only two hours.

We settled in for a week below the Cape Fear River on Oak Island where there are palm trees and Spanish moss-clad live oaks. I plucked ripened jelly dates from a palm tree that was two doors down from us. The fruit was citrus tart and mango mellow.

With a hundred other people, at two one morning, we watched loggerhead turtles hatch and make their way to the loving embrace of the Atlantic. We fished and ate shrimp and visited the North Carolina Aquarium over at Fort Fisher where Charles petted sharks and sting rays.

Our last two days we stayed in a motel room overlooking the charter boat fleet in Hatteras Village.  I watched the mates at four in the morning readying the boats for a long day of fishing in the Gulf Stream We watched them come in with their catches in the early evening, watched them weigh the wahoos and mahi-mahi, which both ended up as the catch of the day in half-a-dozen local seafood restaurants.

That final night, long after Charles had fallen asleep, I checked my email and there was a message from our attorney. Charles had been granted private placement.  And though the first school would not work out, the second one did. Charles discovered himself there, learned that his only limitations were constraints he placed on himself.

He also learned to deal with bullies. Here’s what he told me recently: “I learned to ignore them, but sometimes you have to confront them and tell them to leave you alone. If they don’t listen to that, you just ignore them.”

When he finally settled into a high school where there was no tolerance of bullying, a place called Dominion Academy, Charles began to write furiously. Every single day, he would turn out lyrics for songs, or flesh out stories that he wanted to eventually turn into screen plays. Since the pandemic struck in earnest and school classes were cancelled, Charles writes every day for an hour or more.  And he reads voraciously now, and knows more about film and music than any 19-year old I’ve ever met.

Here’s a song Charles wrote a couple years ago, both music and lyrics. It’s called “Into Another Life.”

“She’s in a hospital room holding her child

While her friends and family watch with love,

Crying tears of joy.

 “First, you’re born.

Then you’re taught to speak words and walk.

Go to daycare and school to learn, make friends, puberty, graduation.

“Go to college, fall in love, get married,

Have beautiful children, take them on vacations. 

Become elderly and frail in a hospital room.

“You’re at his funeral crying in your eyes in sorrow and pain.

He says, “Don't be sad or scared, my darlings.

I know the pain will go away when I'm in the blanket of heavens.”

During the most recent interview I had with Charles, when I asked what he wanted to do, he smiled.

“I want to write and be kind to people and change the world,” he said. “I want people to know how

there can be wonder in everything.  You just have to look for it.”