To Florida and Home Again

When my husband and I spent an hour installing a multi-piece, vinyl, turtle mural, exploding out of the wall of Rylan's freshman dorm room, we couldn't have known that we'd be back, 9 weeks later, to take that damn mural off that same wall. That's what I continue reminding myself. We couldn't have known. We enrolled Rylan at this college for neurodivergent learners after years of research and hours of conversation with staff and administration. We sent him for a 2-week trial leading up to the school year. He took online classes with the college all summer, and we, as parents, met with his transition counselor through it all. The whole family was primed, prepped, and determined. And so incredibly excited. Rylan, like most incoming college freshmen, was ready to get the hell out of the confines of home. We were annoying every bone in his body. Our demands that he unload the dishwasher, take out the trash on Fridays, and switch his own laundry from the washer to the dryer were unreasonable and unappreciated. We returned his feelings of annoyance and were confident in our shared decision to start this new chapter in Florida.

Placing Rylan in the orbit of this community of support would allow me space. Roominess. I wasn't sure what that would feel like, but I was confident that space for myself would be found. Because of that knowledge, I had begun making plans to purchase a business that I had stumbled upon. It was a "perfect fit" for me, focused on literature and book clubs. I was ready to begin something professionally that was just for me. It was my time.

The first two weeks he was gone, I actually mourned how very little Rylan showed that he needed me or even wanted to speak to me. It seemed he was off and running, living independently for the first time with no help from home. I didn't know what to do with this reality. If you're raising a neurodivergent child, or a child with any disability, you know the depth to which being needed goes. It's a consuming fire most days. The radical switch to his independence felt disorienting and nonsensical. And amazing too. Rylan called once during those first two weeks. That felt off, given his prior inability to throw trash away without consulting me first. I tracked his location every day to make sure he was going to classes. He was. And then it became clear that when he wasn't in class, he was in his turtle-themed dorm room. That's when our concerns for his overall well-being began.

Around the time we became concerned about Rylan's participation in college life, the business deal I had spent months planning fell apart. The day before closing, to be exact. It was clear to me that the universe (the Divine, as I think of it) was telling me that it wasn't my time after all. I begged for that business door to open, but instead, that damn door was locked and deadbolted. I cocooned into myself and had a difficult time getting out of bed for a week.

Something was coming that needed my full attention.

I was terrified to learn what that something was. I didn't assume it would mean that Rylan would leave college and move home, but two weeks later, after I became his hour-by-hour mental, social, and academic coach from 1,000 miles away with zero help or communication from his college community, that's what happened. Rylan wasn't doing well in his classes. He wasn't doing his work outside of class or getting support with executive functioning skills in order to do that work. He also wasn't leaving his dorm room, which meant he wasn't making friends or socializing, which led to an emotional health decline. Our kid wasn't really doing college because it turns out, he isn't ready for that level of independence yet. We were paying a small fortune for him not to "do" college, 1,000 miles away, where we couldn't have eyes on him or walk alongside him. And so we flew to Florida and brought him home.

We've been home again for three weeks. For the first two weeks, I existed on the struggle bus, not able to find hope that I'll have space to journey down my own path any time soon. I was so ready to journey. I believed it was time. This pivot has felt cruel. It's been especially difficult on Tim and my marriage. Parents who are raising kids with disabilities deal with grief triggers differently. Without vulnerable and intentional communication, walls can go up and grow taller each day. We've had to relearn how to acknowledge our different ways of coping and find peace in this latest transition. There's been no shortage of transitions in our family. Some we can plan for, and others sneak up like a freaky clown in a dark corner of a haunted house. This one has felt like a freaky clown. I hate clowns. All clowns. Tim and I clawed our way back to each other once the intention was set, but none of this is comfortable or pretty.

Finally, today, I'm in my office writing. Alone. Rylan has been settling into his new, for now, normal. Together, we established a couple of ground rules for his days, the priority being space to find independence in our home. No dishwasher or trash demands yet. Don't want to be "unreasonable" right out of the gate. He didn't miss a beat coming home from college. His motivation to figure out what's next has come before I was ready, which has been a challenge. When he's excited about something, it becomes a big thing. Backburners don't exist with Rylan's passions. Simmering really isn't even possible. Our kid is no longer comfortable driving, but he found himself a full-time job at an establishment that will require him to purchase a plethora of red shirts and khaki pants. He's thrilled and eager to start this new chapter. I'm trying to figure out how to get him there and back every day. One step at a time. Rylan has been kicking ass in his own unique ways. He didn't cocoon himself or feel grief over the loss of his college dream. He explains that he feels indifferent about leaving college. That kid set goals for himself and got to work (with my help, of course). It took time for me to notice his lack of struggle and follow suit.

Expecting perfection out of a place, a community, a person, or a plan - it leads to disappointment. Perfection or even near-perfection is a fairy tale, and we believed in the fairy tale. The college we chose aims to be a lot of things for our population of learners, and it fell short for him. We expected things that I now believe are unreasonable. I couldn't have known that without being dragged through it - without Rylan learning resilience through that struggle. Coping with this latest transition has included permitting myself to be a hot mess when things don't make sense, to stay in bed, covers up to my eyeballs, and to accomplish zero things on my multi-page checklist. I've permitted myself to admit that I don't know anything for sure and to sit in a nauseating maze of questions. I've allowed fear to creep in so I can analyze it from various angles. Coping has also included listening for the Divine, which required and continues to require a laying down of all control. That is the ultimate level of uncomfy.