On February 3, 1997, the door to this world opened for me like it does for all of us as we leave the safety of our mother’s womb and begin our journey in this life. Little did we know that this journey would not only take on a daunting, life-changing twist for me, but also for all of my family. My first year of life was as it is for almost everyone, but my mom started to notice that the milestones that are normally met in a child’s life were not happening, and I was literally leaving them and living in my own little world. At age three, my mom and aunt decided this was not “normal” and it was time to see a specialist, and the fears they were having were confirmed. The diagnosis of autism in any family can create deep sadness and fear. Then the question arises—what now?
I had drifted into a place that was so confusing for me and my family. I did not make eye contact, did not talk, and had meltdowns that were emotionally painful for my family and myself. My family rallied, though, and wanted to do all they could to give me a chance at being able to function in this world. They collaborated with many agencies, from the county to the state-level, to get me the therapy I needed. The Wisconsin Autism Project, their staff, and doctors put together a plan for me that included 32 hours of in-home applied behavior analysis (ABA) therapy. Still, progress was slow. The disability was daunting.
My family so feared I would never be able to do anything outside of the bubble they had put in place to protect me and themselves. My aunt and uncle became my only respite caregivers. My home routine carried over to my aunt and uncle’s home, from food choices, sleep schedules, activities, and how to handle me when I became confused and tantrums were my only way to communicate. I spent most weekends (and whenever my parents needed) with my Uncle Paul and Aunt Lola Longyhore as a reprieve from the constant care I required. VCR videos were a big part of my life, and because I was a visual learner, I am sure between my parents and my aunt and uncle that we probably had over 300 VCR tapes. There was everything from Barney, Sesame Street, and videos on how to do the everyday tasks, like brushing my teeth, going to the doctor, and handling stranger danger. The repetition and visual nature of the videos were very helpful in learning to recognize the process of those tasks and made them not as scary when they happened. I did well in school; my heightened focus and desire to do my best and follow rules gave me an edge. But like most kids, I never got invited to a birthday party, to hang with others at a movie or McDonalds, and ultimately, my Uncle Paul became my best friend and the person who did kid things with me—sledding, practicing baseball, and becoming the voice of every one of my stuffed animals to teach me things through social stories.
It really wasn’t until a television commercial selling a stack of 12 cups when I was 9 years old did my world change forever. These cups opened doors, and they gave me friends even though most are located all over the world. My uncle and aunt became my sport stacking supporters and the ones who raised funds any way they could to get me to sport stacking tournaments all over the United States and Canada—and they continue to do this.
I helped share this tool and the sport at the 2014 National Autism Conference in St. Pete Beach, Florida and the 2015 Wisconsin Autism Conference in the Wisconsin Dells. I truly believe that this sport and these cups are tools that can open doors and lift kids with a diagnosis of autism like me. I have been stacking for 10 years, and I have no plans of quitting. I will continue to try and share my story to offer families hope that their kids can do much more than they ever dreamed of, as long as they are willing to open doors for them. Yes, the cups of my life have not always been stacked in my favor, but these cups and the world of sport stacking have opened doors, opened up my life, carried me through my mom’s unexpected death in 2015, and taught me the 3 P’s of Patience, Practice, and Perseverance my aunt and uncle told me I needed to continue in the sport.
Even at 20 years old, I continue to better my speeds in sport stacking, and I believe it has helped me in college and has been part of why I have been on the President’s List of students having a 3.5 grade point average or higher for the past four semesters and how I have become a member of Phi Theta Kappa. I know the challenges I face are far from over, but I want other kids with autism and their families to hear my story and to know they, too, can succeed.
Jesse Horn was born in Wabasha, Minnesota and was diagnosed with autism at age three at a Mayo affiliate in LaCrosse, Wisconsin. Jesse currently lives in Buffalo City, Wisconsin, and attends Minnesota State College Southeast in Winona, Minnesota.
Lola Longyhore is the Retired Director of a three-county Aging and Disability Resource Center in Wisconsin. She was born and raised in Buffalo City, Wisconsin, a small, rural city located on the banks of the Mississippi River.
This article was featured in Issue 62 – Motherhood: An Enduring Love