Maceo stands bent over his knees, gliding his feet across the multi-colored carpet, lost in the patterns, lost in the repetition. He swings his swollen, blistered fingers like propeller blades between his teeth. He propels oohs and moos between spit-covered fingers, becoming louder and faster, gaining momentum. Attempting to fly.
“Goodbye, goodbye, goodbye,” Maceo says, each word drawing him deeper into his world.
Instead of soaring, Maceo flings himself back onto the couch, crashing into its center. He giggles and wiggles into position before picking up his iPad and launching into his favorite car racing game. He bursts out laughing as he attacks the on-screen controls for accelerating the race car and increasing the volume of the game’s music.
He usually covers his ears with his thumbs when he hears loud noises. He stiffens his fingers in the air like moose antlers as a distress signal.
As he plays, colors flash across his face like a kaleidoscope. In the quiet living room, onomatopoeic sounds collide. From the dining room table, his father, eldest brother, and I observe. We sit together, our gazes and hearts fixed on the door to his world, waiting for him to open it.
Maceo does not always welcome us into his world in how we expect, embrace, and want to reciprocate as his family. Yet I’m grateful just to see him enjoy his brief respite between getting off the school bus and beginning three hours of Applied Behavior Analysis (ABA) at-home therapy. In a tangle of silent questions, I wait for him to turn the deadbolt and swing open his door.
His door opens a few minutes later. He looks into my eyes, smiles the smile that melts my heart, and then pecks the plumpest part of my cheek.
When I watch him find his own version of peace, I am perplexed. When I see him stim, I hesitate. Should I reprimand, redirect, or redress him instead of…what?
Despite the parent training we received from BCBAs (Board Certified Behavioral Analysts), the words “you can’t” trip out of my mouth. I’d rather be the mother who tells my eight-year-old son what he can do, even if it’s awkward. He needs his own pressure valves and to learn when best to use them.
But telling him what he can’t do has become especially important now that we’re in this apartment, especially after what happened in July 2020, when our downstairs neighbors called the cops because Maceo was making “too much noise,” as they put it.
Telling my son, “You can’t,” may one day save his life.
Our St. Cloud neighborhood home, in West Orange, New Jersey, was built in the 1960s. Beautiful lawned houses. Perfectly quiet. When we bought the house in 2014, the competition was fierce. We once went to an open house and later learned from our realtor the house had received 12 offers that same day.
After two years of searching, we landed our dream home in the middle of a cul-de-sac surrounded by wonderful neighbors. The downside to our house was that it was being a dream-in-training. The previous owners allowed the house to decay to its bones.
Termites, mold, rotting wood, and asbestos-laced floor tiles left the lower level of our home uninhabitable. To bring the house up to code, we had to rewire it. After closing, we learned the garage flooded every time it rained. Renovations would take us years to complete.
Despite structural flaws, we built our family. In that dated and dilapidated kitchen, I taught Keith how to make his grandmother’s okra and shrimp gumbo. Keith and Kerwin started a holiday tradition of making homemade cookies. Growing butterflies together, watching them develop as caterpillars, hang in chrysalides, and then emerge as full-fledged flying butterflies. I set up a preschool classroom in the living room, complete with easels and storage containers brimming with wood puzzles, art supplies, maps, and workbooks. We built a home library. Both boys left for their first day of preschool through that front door. Brunches and birthday celebrations with neighbors, families, and friends. Having an endearing speech therapist and BCBA with high expectations who assisted the three of us in better understanding how to support Maceo’s cognitive and language development.
We, too, went through a lot of heartbreak in our house. At the dining room table, we read the diagnostic results of Maceo’s testing, which confirmed that he has autism and a speech delay. Kerwin broke the news that he had been let go from his job in the living room. Standing in the kitchen in tears over yet another email or phone call from Maceo’s preschool about him having a runny nose, not wearing his shoes, or other maladaptive behaviors that resulted in either his teacher or the school nurse regularly asking me to pick him up early.
This apartment in King of Prussia, PA, is a two-bedroom, second-floor flat in a complex that was also built in the 1960s. Built atop sprawling hills and within earshot of the highway, there are many families with young children here.
This apartment has been a place of firsts for us again. All four of us live together. After Kerwin was out of work for 18 months, then landed a new job here, and began commuting to West Orange on weekends for another 18 months, all four of us being under one roof is a blessing we don’t take for granted.
Keith tested into the district’s Gifted and Talented Program (GATE) and thrives. His relationship with his GATE teacher of nearly four years is everything a parent dreams of. Maceo attends a school where teachers expect him to excel and support him, and we see his growth and change since being here. At the recommendation of his former kindergarten teacher, Maceo even goes to the district’s annual summer camp along with his brother.
We experienced close relationships within our St. Cloud neighborhood, and thankfully we built similar wonderful relationships with most of our neighbors in King of Prussia. We live in a building with three other apartments that share a common entrance, which means we exchange pleasantries when we see each other and talk about families when we bump into each other. We give gifts during the holidays and help out when needed during bad weather. We are a little community.
Our downstairs neighbors, however, made it painfully clear that they did not welcome our family.
There, in St. Cloud, our whole family was often invited to neighbors’ homes for all the usual celebrations. We hosted dinners and get-togethers at our home. Neighbors loved our sons. And we loved their children as well.
Here, in King of Prussia, we don’t have friends or family over as often. There’s little room to entertain or for kids to run around. And now under the cloak of the pandemic, a lack of social distancing is dangerous.
There, the Coores, who shared our cul-de-sac, frequently hosted gatherings and always invited us. Sometimes they invited just our family so we could hang out privately. Maceo had a great time there, running around barefoot and making as much noise as he wanted. Keith enjoyed gardening with Richard, who tended to everything from tomatoes to callaloo. Richard also taught Keith how to play soccer.
We once spent New Year’s Eve with them, and they insisted on bringing the boys. They suggested we bring them sleepwear and have the boys sleep in their daughter’s bed because she was visiting her mother. We partied until late at night and wrapped our boys in blankets they shared, and carried them across the cul-de-sac, smiling and grateful for the invitation to spend so much time in someone’s home and heart..
We embraced one another’s families. Every day when he got off the bus after school, Maceo would rush to the Coores’ door and knock to see if they were home.
There, the Johnsons, the boys’ godparents from nearby Montclair, do everything wonderful godparents do. They’ve gone on playground playdates, comic book store visits, and amusement park outings. Despite Maceo’s diagnosis, they frequently took the boys on outings, babysat, or just came by to visit.
Here, Maceo’s stimming and quirky behaviors caught the ire of the downstairs family from the first month we moved here in August 2018. A rotating family member knocked on our door. All. The. Time. The knocks were just the start. They escalated to banging on the walls, intentionally leaving their apartment, and letting loud music play in their apartment for hours, music that was so loud our water bottles trembled from the bass. It frayed our nerves. Especially during a pandemic when there are few places to go for a retreat.
Maceo is like any other boy. Some of these behaviors, however, are more difficult than others. They come and go, which means they disappear but can reappear quickly. He runs rather than walks, jumps off the couch, hops in place, hides in corners, removes his shoes constantly, climbs countertops, and disrobes. When frustrated or challenged, he has been known to spit or hit. But he’s done nothing that necessitates the involvement of law enforcement.
“You can’t run. You can’t jump. You can’t play real loud,” is a constant refrain of my husband and myself.
Here, without a spacious place in our home to play and especially because of the pandemic, we’ve had to take the boys outside regardless of the weather. I used to take the boys to the nearby McKaig trail as early as 6 a.m., sometimes before the start of virtual school, just so Maceo could (hopefully) work out all his energy. It meant purchasing thick carpet to put on top of the carpet that was already installed throughout the apartment to insulate the noise. It meant taking the boys to multiple parks and trails in a single day, or taking multi-hour drives.
Seeing the officer at our door that fateful day in July 2020—courteous, sympathetic, and perplexed as we were as to why he had been summoned to address a noise complaint about a child—made us acutely aware that these walls in our home are not ours.
I hate reliving that moment, and the months that followed, because of pain that I felt—and still do—on a cellular level. That smackdown knock, meant to put us in our place, echoed long after the officer had left and the neighbors had moved. Seeing my baby curling into a pretzel and sobbing inconsolably, hopping like a jackhammer on one foot, his way of reconciling his pain. It tore my heart. Kerwin, the school staff, and I had noticed an increase in his hitting and misbehaving in the weeks and months that followed.
What did he make of the reason the cops were called? I only know from his bodily confessions that he internalized the visit as something very, very bad.
But it wasn’t just Maceo.
Keith, jovial and witty, became bitter and angry. He felt helpless as an older brother. A protective brother who could offer no protection. Kerwin remained collected and strategic, but he was a tea kettle one minute from over-boiling.
Knocking on our apartment door rattled all of our cages.
Here, that knock on our door did not open into Maceo’s world. It exposed the harsh reality of people’s willingness to weaponize police. The risk of brushfire that can erupt when someone perceives neurodivergent children as a threat or willfully disobedient, exacerbated by “poor parenting,” and resorts to taking action through the misapplication of law enforcement. My friends who also have children on the spectrum share horror stories of neighbors that harass them, judge their parenting, threaten to call child protective services, and call the police on their children.
I wanted to keep the four of us safe within the confines of a house, shielded from cruel stares and assumptions. From harsh verdicts and even harsher treatment. But it still came as constant complaints from neighbors about the noise of living.
Here, now, what we are learning more and more is that walls do not make a home. It is how one lives in the walls that matter. Our move here, those neighbors, that knock, and this pandemic redirect our focus on our family, regardless of the walls we find ourselves in.
Keith is now learning to play the flute, and Maceo the cello. The sounds of their souls transmigrate into the instruments they play. There is the joy of the meals we have been sharing together since the start of the pandemic. The podcast Kerwin and Keith started about their shared love of Star Wars. The ways we as parents have been looked upon as activists in our neighborhood and school, being asked to speak at a district-sponsored event where we shared our story, including, among the panelists, the chief of police. The video of our presentation was used at a district-wide professional development day, including Keith’s PSA about what autism is.
Like West Orange, like here in King of Prussia, where we live, the space in our hearts, is becoming a space to reconcile, a place to regroup. A place to be a family, just like those families that moved to St. Cloud and to King of Prussia.
Maceo makes many noises. Those that are irritating and those that are loving. Regardless of where we live, I am grateful to be around them and to better understand the importance of protecting the noise of his living.
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