Karla lives alone on 40 acres outside a tiny town about a half hour’s drive from work. It’s a peaceful, magical place where she can retreat each day to recharge after a long day of interacting with people. She knows that a lot of people think her life is weird. That’s only because they don’t understand it. She says that people ask her all the time if she gets lonely out there, and she finds the question amusing. Far from ever getting lonely, she relies on her farm as a refuge from the rewarding but draining day-to-day life of job, socializing, football games and advocacy work.
There is always something to do at the farm, whether the rest of us would recognize it as “doing something” or not. It’s a safe place to get immersed in a special interest, throw yourself into physical labor, take care of the horse, watch the dog chase squirrels, stay up late to see the Perseids in summer, listen to the frog chorus in spring, climb a tree, hike through the woods, sit by the fire pit, search for koi in the pond, enjoy the sunset over the neighbors’ cherry orchards and grapevines. Once you come out to the farm and see things through Karla’s eyes, you “get” it.
When your kids are little, it’s natural to ponder what their lives will look like when they grow up, and I think most of us imagine that they will live somewhat like we do. Then, when the realization comes that your kid is different, you start to wonder if he will be able to have a “normal” life, and it’s easy to get caught in a downward spiral of negative thinking: will he be able to have a job? Live independently? Pay rent/mortgage? Have friends? Have a partner, be a dad? And when you think about all the things he may never do, in the context of what you HAVE done in your life, you see things from a “loss” perspective, perpetuating the spiral of mourning.
With Karla’s help, I flipped that thinking around. I dismissed the context of my own life and started looking at possibilities for Nick from scratch. What kind of life will he WANT to have? A house in the city? A suburban apartment? A rural retreat? Will he want a career in high-tech or a job at one of his favorite hangouts, the local reptile store? Will he seek romantic relationships or be perfectly content without them? Truth is, I don’t know. The person Nick is now is not the person he will be at age 18 or age 30. But seeing the way Karla has set up her life to suit herself perfectly, I know that all I have to do is be open to any possibility. So my goal now is to help him set up his life in a way that works for him. I won’t see it as a loss or failure if it doesn’t look like the life I imagined for him when he was a baby, or if it doesn’t happen on the usual timeline.
My job is to support him, not try to fit him into a preconceived notion. In his school, I insist that he have the supports in place to get the education he deserves in his own way. It’s not a failure that he doesn’t attend a full school day; it’s a grand success that he is thriving and learning on his custom schedule, on track to graduate with honors. And it will be a grand success when he, too, has a lifestyle that is weird but perfect.