In my late twenties, I took a job as a case manager for families of children with autism and other disabilities. I’d been working with individuals on the autism spectrum in one capacity or another since I was nineteen working my way through a degree in Human Services. As a case manager, my job was funded by a Medicaid Waiver program created to connect children with disabilities to supports and services so they could safely remain at home and in their communities.

 

On an unseasonably pleasant day in late March, I went to visit one of my high-needs clients, Kyle, a 13-year-old, nonverbal boy with autism. Kyle’s parents were divorced and shared custody. He spent two weeks with his mom, Jean, and then two with his dad. Kyle couldn’t sleep without medication, he preferred to be naked, he became aggressive toward himself and others when he was frustrated, overstimulated, or when those around him couldn’t understand what he was trying to communicate, and he frequently eloped from his home. 

 

The sun felt warm for the first time in months as I walked up to Jean’s duplex. Snow melted off rooftops and tree limbs and the drips tapped the rhythm of seasons on the verge of change. Jean, Kyle, and two police officers who had just brought Kyle home were talking in Jean’s driveway. A neighbor had called the police to report that Kyle was in her condo; he’d left Jean’s house while she was in the shower. When the police got to him, Kyle was in the neighbor’s bathroom, naked, eating her toothpaste. 

The officers chatted with Jean, who was originally from Louisiana. I smiled as I listened to her turn on her most twangy Southern charm, which she often did for authority figures. One of the officers played peek-a-boo with Kyle who was now tethered to his mom’s side– as soon as he got back, Jean threw a bathrobe around him and was holding the belt tight. 

 

Jean looked like she hadn’t slept in weeks. She and Kyle’s dad each had their own struggles, many of which were exacerbated by the strain placed on them by the intensity of Kyle’s needs. They had other children to care for, and the entire family lived with an element of post-traumatic stress and anticipation of a crisis waiting just around the corner, like combat soldiers after the war. 

 

Kyle’s story was peppered with police involvement, trips to the emergency room, and short-term inpatient stays in the behavioral health unit at the local hospital. Over the years, I told and re-told his story to the police so they could better understand him, which was crucial to his safety, as they were often called in situations like this, as well as when Kyle became so aggressive to himself or his family that they couldn’t safely manage him on their own. I told his story to the county and state departments that oversaw his funding, and, with his parents’ insight, I crafted a narrative that helped his world understand what he needed and how to provide what he needed in a way that respected his dignity and his spirit because though he couldn’t speak, Kyle had opinions, preferences, and personality.

 

After the officers left, Jean and I sat at her kitchen table, and she cried. “Every time he runs off, part of me hopes he just never comes back.” I let that sit in the air between us, trying to imagine what it must feel like to mother–to nurture, shelter, protect, love– an incredibly vulnerable child for 13 years and be so full of adrenaline and exhaustion and grief that you hope he just disappears into thin air one day. 

 

Kyle walked into the kitchen shaking a shoelace in front of his face squealing through his grin. He looked at Jean, perhaps noticing her tears, and came to her. He put his face close to hers and giggled wildly. Jean wrapped her arms around him, closed her eyes, kissed his forehead. “I love you, baby.”

 

I was a case manager for ten years. I sat at hundreds of kitchen tables just like Kyle’s, in all sorts of homes, witnessing moments of hopelessness, survival, love, endurance, perseverance, fear, disaster, gratitude, and celebration of the human spirit. It was my job to gather information and to tell stories that introduced my clients to the world, stories with the power to inform their path to resources that would ultimately maintain health and safety outcomes. 

 

During these years, I developed a deep professional respect for the power of personal narrative and the stories we tell. I learned how to craft narratives that convey need without denigrating anyone’s dignity, stories that could be used to guide the way toward assistance and quality of life. I also learned how to observe and listen and appreciate the power of language to shepherd life. This is how I became a writer. 

 

My storytelling centers around connection, what it means to be human, and the depth and range of the human spirit. My writing is an act of human service, an offering from one human to another. I write creative nonfiction inspired by all the years of working with vulnerable children and their families, who live at the mercy of the help they can get in a world that doesn’t always understand them. I also write fiction that zooms in on ordinary moments in time, to acknowledge and celebrate and dissect the essence of what compels us to keep walking through life, figuring it out as we go.

 

When I write, I think about individuals like Kyle and his family. I think about what I’ve witnessed, all those moments when I sat awestruck by people doing their honest best to get from one hour to the next. Writing is an answer to a question, and more often than not, I write to better understand what keeps us moving forward. I hope to bring something to this world that does justice to the stories I was invited to hear over the years, something that feels worth repeating because it connects us to our humanity and one another. 

 

As the years piled up, Kyles’ parents struggled more and more to care for him at home, and they begged the system to take him, to get him more intensive treatment and support. The system pushed back for a long time because removing a child from his home is the absolute last resort. I did my best to advocate and amplify their voices by continuing to tell their story. Ultimately, it was Kyle’s sister, who was one year younger than him, who spoke with a Child Protective Services worker and explained that her entire family’s quality of life would never get any better–in fact, she said, it was getting worse the older Kyle got–that finally helped the system agree to place him in an institutional setting. 

 

I was there when they moved Kyle into the adolescent unit at a highly regarded residential program where he’d have doctors working with him daily, a school on site, and staff caring for him around the clock. Again, I watched his parents smile bravely at Kyle as they squeezed his hand, unpacked his suitcases, gave the staff a crash course on his likes and dislikes, and hugged him goodbye, all while a mess of emotions dripped off them– fear, grief, gratitude, relief–tapping the rhythm of another season changing.