The Short Bus Diaries » Confessions About Life With an Autistic Son

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Surviving the Middle of Nowhere

We’re not actually in the middle of nowhere. That’s just what it feels like to our friends in DC. We’re actually only about 65 miles from our old house, and can be back on Capitol Hill in about an hour and 15 minutes. See? Not that far. (But just far enough to flee to, should Donald Trump start a nuclear war, or the zombie apocalypse myth become a reality, according to the same DC friends who cannot contemplate crossing the 14th Street bridge to shop at the Alexandria Target). 🙂

Successes

I think we’re finally hitting our stride out here. A Farm Less Ordinary is a real thing, with employees, a CSA (Community Supported Agriculture) farm share membership, and burgeoning infrastructure. We even have stationary. See? Real.

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I feel we really are on our way to creating that little bubble of our own creation that we were originally seeking when launched this plan over a bottle of wine. While my husband still tries to pull me back into the real world with his rants about what he just heard about on the news, and despite my occasional Facebook posts about the 2016 U.S. presidential race,  I mostly succeed in keeping my head down and 99% focused on our life out in the country. So I’d say that we have indeed achieved our goal to move to the middle of nowhere in order to stop comparing ourselves to our peers.

In fact, I really only notice how insane our life is when it is placed against the backdrop of people from “the outside”. It’s when we have visitors who watch us running around, putting out fires, telling babysitters where to find the diapers while talking to our son’s Medicaid case manager, cooking dinner, cutting paychecks, feeding animals that walk across our counters (sorry, Mom!), sitting on conference calls, figuring out why there is no water coming out of the faucets, teaching babysitters how to cook, packing lunches, keeping the ancient lawnmower running, starting seedlings, editing documents, selling houses, hitting deer with our car, explaining to our growers how to pick only the bigger vegetables and then explaining to our CSA members why some of our produce is on the big side because we simply can’t stay on top of all of it…It all feels so normal – this constant activity and decision-making. Living like this is obviously untenable in the long-term. But in these early years, we are powering through it, surviving and growing this farm through sheer willpower.

It’s also wonderful to see how much less isolated we are this year, compared to the last year. We now have volunteers texting us that they’ll be by in half an hour. We have reporters coming to visit. We have other families who are thinking of launching their own disability-friendly farm…psychologists who want to try some “farm therapy” out on their clients, rather than having them sit in an office…parents and their teenagers who are looking to do some community service…and of course, our friendly UPS/Fed Ex/postal workers who deliver the packages that make life in the “middle of nowhere” possible. Last year was simply…lonely. And now, we’re meeting some really good people who lead odd lives as well, and see nothing peculiar about ours. In other words, we’re building our tribe. We’re flying our “freak flag”, and people are coming out here to fly theirs, in greeting. That too was a major goal in moving out here. Mission accomplished, but always ongoing.

Failures

Regarding one of our other goals, however, I’d say that we have failed. Despite that dog-eared American story about moving to the country for a simpler life, we have somehow managed to make our lives immeasurably more complicated than it was when we were fighting a legal battle with the school system, squeezing in play dates between photography sessions and real estate open houses, and working as a traditional cubicle jockey.

These days, we chug caffeinated sodas all day long and spend most of our alone-time with laptops on in bed, the TV on in the background, and a cell phone in one hand. And then, without fail, immediately after I put the ear plugs in and the sleep mask on–because my husband always works later than me–I have to pull them out/off as soon as I think of one more thing we forgot to add to the schedule for the next day–a phone-call to be made, a donor to thank, something to be picked up at Home Depot, or a loose end about who needs to be where for which child hand-off or volunteer visit to the farm. Our brains must constantly be on in order to deal with the never-ending to-do list that constitutes life on a farm, and the launch of a new non-profit. This simply isn’t healthy. My hair has grayed significantly since living “the simple life”.

To be brutally honest, we sometimes ponder what all of this craziness means for our children. In spite of my best effort to lay out the weekly schedule each Sunday night, there are daily frantic moments where I find myself barking orders at a babysitter as I run out the door to a meeting with a dinner of Cheezits in my purse, or reminding my daughter that she can’t cuddle with me during her TV time because I need both hands to type. And although I am “home” now more than I was when we lived in the city, “home” often means that I am out til dark on the farm, because I had to work my other job during the day, and needed to get some farm time in before every drop of daylight is gone. Meanwhile, babysitters are putting my kids to bed and sending me adorable photos of their days out in the real world with my kids. I am Mother of the Year, clearly.

We are constantly questioning our motives and choices when it comes to launching this non-profit. There is no one to blame for any flaws in our plan but ourselves. We brought all of this on ourselves when we decided to take on multiple jobs to pay for the non-profit and farm start-up costs, for the horse and music therapy for our son, and for the gymnastics/karate/soccer classes I sign my daughter up for in some sort of parent guilt exchange. The constant guilt I feel for not accomplishing enough each day, and the guilty relief I feel during a rain storm or a terrible cold, when I simply can’t get outside to the farm or muster the energy to work on my laptop…? These could all be erased if we simply chose to throw in the towel and just work, live, and play in the most traditional ways. But we choose not to, even though we really have no idea whether we are actually making a difference in anyone’s lives.

I know that my children’s memories of childhood will be a mixed bag of happy pastoral images playing against a backdrop of exhausted and constantly harried parents. Sometimes it’s easier to focus our well-meaning goals than on the emotional effects all of this craziness might have on our children, if I’m being really honest with myself.

Fitting In

To further underscore our “otherness” in this new life, we walk clumsily along our own narrow line between two different worlds out here. In one corner, we have our immediate neighbors, some of whom have generously helped us build up the farm through their various skills and businesses, and a few of whom have greeted us at their door while wearing a gun, or walked up to us during a news story interview with a hunting knife in his belt. I never would have guessed that we would one day attempt to make amends with a neighbor over a chicken of theirs that our dog ate. Or that I would routinely pass Confederate flags on my drive home. On the other hand, several of our neighbors have been very supportive of our goals out here and have resisted the urge to chuckle at us city slickers.

In the other corner, we have the calorie-counting, ballet shoe-wearing moms who have no idea what to make of me, given the absence of time or desire to attend the local barre class after school drop-off, and my decidedly non-European non-SUV and lack of tennis or riding gear in the parking lot. I try to be as vanilla as possible during birthday parties and school events (we never bring autism into this world, perhaps in a nod to maintaining the ultra-pleasant veneer among this social class), but it’s clear that my family’s weirdness, lack of membership in any country clubs or”hunts”, and constant need to multitask rather than exchange pleasantries create a level of discomfort that seeps out of me at social gatherings. Note: need to work on my small talk and invest in more stylish boots.

But, as I mentioned, we have really begun building our tribe out here. We like smudgy people who appreciate the dings, shrugs, and stumbliness of our family’s lifestyle. After getting through this growing season (Year 2, in case you’re counting), I feel like we’re collecting the individuals who will make up the world that we are forcing to take shape (this is starting to sound a little Ayn Rand, I fear…) on these 24 imperfect acres. We just need the patience to get us to Year 5. At that point, I feel like we could gather a pretty fascinating group of people together for a rowdy BBQ that would rival all of the degrees and jobs from our DC life, the confederate flag camp sites along the nearby Shenandoah river, and the silly hat-wearing horse people. We just need time to build our army.

All Is Not Lost

Despite all of the hand-wringing about our life out here, it’s important for me to remember that there are moments like a recent morning, when I stood in front of my kitchen sink in my dirty gardening overalls and watched, through the kitchen window, as my daughter helped my husband finish up the construction of her lemonade stand/club house/dog house–a scene that could have been in a movie. Or the loveliness of hearing my son screaming with joy, as he jumps on the trampoline in our back yard, water spraying up from the sprinkler below, naked and without a care in the world. And yesterday morning, as we braved the heat to wash potatoes with one of our employees, when my daughter pointed out that the “volunteer” plant growing along the shed was a squash plant. She knew what kind of vegetable would grow from that plant, without having to ask. Maybe being out here in the country isn’t the worst thing ever for my kids.

Storyboard of UsI love that my daughter collects butterflies–dead or alive–and cicada skins, and that my son somehow manages to get his lunch tab picked up by total strangers, simply by trying to sit still and be a good boy at the local Ruby Tuesday’s. My daughter can come find me out in the garden, and then wander back into the house, all without risk of being run over by a car or dealing with an unsavory stranger. And we can lay on the trampoline and watch meteor showers that are unclouded by light pollution, after having an actual campfire with s’mores…in our own backyard!

It’s an imperfect life, filled with perfect moments, I suppose. And that has to be good enough for now. More often than not, it feels like we made the right choice to upend our lives

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