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

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Why We Did It

I’m spending the night in the city again. I drag my suitcase quickly out of the car, aware that I don’t want to lean into the car for too long at this point of night and lose track of what might be happening behind me on the city sidewalk. After heading into our escape hatch of a city apartment (which my husband euphemistically refers to as a “pied-a-terre”), I realize I have left my laptop in the car and run back outside to grab it—can’t leave that in the car when I’m in DC overnight. I then notice the empty recycling bin sitting on the sidewalk. I roll it as quietly as I can along the side of our house to put it back into its storage spot and notice that the curtains have been left open to reveal our old dining room and book shelves. I remember my husband bringing those sad wooden shelves home from a Craigslist mission I sent him on, shortly after we bought that house and long before my son and daughter ran down those narrow hallways. I quietly sneak back downstairs to our downstairs apartment, closing the metal security gate and door to the sounds of a low-flying helicopter overhead.

On the other hand, as I sit in the basement of a home that used to house all of my loved ones rather than strangers, I know that I could grab a quick meal at any of the 30-40 restaurants within a 10 minute walk of where I’m standing, along with a 24 hour grocery store. Or I could jump on the nearby Metro train, which will deposit me at the center of the American everything in another 10 minutes, or call on a small collection of DC friends that I can be my left-of-center, atheist, blunt-talking, foul-mouthed self among, without fear of offense. Oh, and with city life also comes the little things that make life a bit more pleasant, like bi-weekly trash pick-up and broadband Internet. (YOU HAVE NO IDEA HOW HARD LIFE CAN BE WITHOUT THE ABILITY TO STREAM FROM NETFLIX–Woe is me.)

Yes, this church actually borders are land. This all American, quaint, sweet-little picture of a church represents...not exactly our change in religious beliefs so much as a slice of our daily landscape.

Yes, this church actually borders our land. This all American, quaint, sweet-little picture of a church represents…not exactly our change in religious beliefs so much as a slice of our daily landscape.

So we took a huge risk and bought a house on 24 acres. We pulled our son from his wonderful private “autism school” and the magical bus that picked him up and dropped him off at our house each day, and we pulled our daughter from the DC public school gamble (that one required much less soul-searching) and drove out to the country with a moving truck driven by my skeptical brother, down from Brooklyn for a few days. He was trailed by my supportive but even more skeptical parents (who were driving either their Volvo or Subaru—a fact I present to further illustrate how ridiculous my move to the country must have seemed to the liberal Arugula-eating family that created me).

Like something out of a sentimental movie montage, I have actually stood in the doorway of our now rented city house and watched the ghosts of my younger children run up to greet me after I got home from a photo shoot. Surprisingly, it has become easier and easier to sit in our basement on the nights I spend in DC and hear other families stomping around on the floors above. At the same time, our other home in rural Virginia has settled around me like a comfortable, extremely casual sweatshirt. I don’t even panic anymore when I step out of our Prius (yup—I bounce down our gravel driveway in our little liberal-finger-in-the-eye to all of our truck-driving neighbors, even though we secretly covet their ability to haul huge piles of anything anywhere) at night, fearing that I might step on a snake or encounter a bear. Okay, I did just buy a snake bite kit. But I have also decided that I stand a greater chance of getting Lyme disease from the ever-present ticks than I do of getting bitten by one of the many reptiles and amphibians I spot crawling around on our land.

Here’s the thing. I know that we’re never going to completely fit in. But every day that we are not trying to squeeze our messy, unpredictable lives into that DC row house and its accompanying lifestyle of suffocation, tension, and comparison with people whose lives seemed so much more orderly, predictable, and easier than ours, I feel less and less concerned with what I am missing out on by isolating ourselves in our fixer-upper country home in the middle of nowhere.

We gave up chasing the ghost of normalcy.

And we are pretty happy with the decision.

After working with David Catania to craft legislation that would measurably improve the treatment and consideration for students with special needs in DC public schools…and after a long series of legal fights with DCPS on behalf of our son…we were burned out. We felt like we had made a positive impact on our community—yes. We had some legal success facing down DCPS and its morally corrupt Office of the State Superintendent of Education—check. But there was still a shadow hanging over our house, as a result of the politicking and legal finagling. We didn’t look forward to the next round, which we knew would come in the spring of 2015.

We were also tired of panicking whenever our son got loose from our hands and bolted down a city sidewalk. And although not life-threatening, it was simply annoying having to constantly tell our happy, socially-oblivious son to stop squealing when jumping on the trampoline in our tiny back “yard” in order to allow our child-less neighbors to exercise their right to sleep in on the weekends.

Yes, City People: we have an actual fire pit, as opposed to a metal fire thing on top of our patio. You know you want to come out and visit for some s

Yes, City People: we have an actual fire pit, as opposed to a metal fire thing on top of our patio. You know you want to come out and visit for some S’mores. And no one’s going to stop up from setting off some fireworks out here on the 4th of July. Who needs broadband Internet, when you can have FIRE?!!!!

We wanted an easier, more spacious life. Less struggle, more room to be weird. In addition, we needed a home that we could see our son living in until the end of his own time on this planet. And until some sort of commune exists that will embrace, protect, and celebrate families like ours, we were going to have to carve out our own little comfortable spot on Earth—albeit a spot that was within driving distance to both of our city and suburb-centered careers. Because homesteading and being weird in the country doesn’t come with insurance benefits, unsurprisingly.

And may God bless Amazon Prime.

And may God bless Amazon Prime.

Oh, and Amazon Prime still arrives within two days. That’s important too.

So we have decided to home school our son (and will be combining this with partial public school in the fall). We are actually terrible teachers, so we rely on other people to help us out. Our program incorporates physical activity, constant exposure to the outdoors and its sensory inputs, as well as basic life skills training in the house.

So we have decided to home school our son (and will be combining this with partial public school in the fall). We are actually terrible teachers, so we rely on other people to help us out. Our program incorporates physical activity, constant exposure to the outdoors and its sensory inputs, as well as basic life skills training in the house.

Somewhere along the transition (and there was definitely a bottle of wine involved), we decided to expand our initial vision of this new life. This started from an imperative to find some sort of meaningful work my son could perform, and also from our very practical desire to develop a semi-independent housing situation for him, where some sort of support person might also live. So the brainstorming kind of went like this: working with his hands + his love for being outdoors + eventual new building with plumbing and electricity + 24 acres that we need to figure out what to do with and…VOILA. We would create a world for him where he could eventually have all of these things and maybe share some of it with other people like him. After all, there are tons of parents out there like us who have no idea what their kids will do when that magic school bus stops coming and that meager SSI check starts arriving.

We started with a whole lot of dirt. Given that we

We started with a whole lot of dirt. Given that we’re too broke to buy a tractor, we had to rely on our neighbors to help get us started. He did…tractor stuff…to the land so that I could grow stuff on it. I also had to figure out how to take soil samples and my husband had to figure out what to do with a pond—we’re still working on that second one.

The fact is that autistic kids will become autistic adults. And these adults need something to do each day that provides them not only with meaning, but with responsibility, camaraderie (to the extent that they want it) and even an income. We need to leave something behind for our son and for other adults like him; otherwise, how will we be able to say good-bye, when the day comes? We (the collective “we” for parents like us) can’t rely solely on our other children to keep the machine running. That’s just not fair. We need to build an infrastructure that our remaining family members can rely on to supply not only the basic necessities for the adult in question but provide satisfaction and even happiness to a population that often ends up homeless, warehoused in scary group homes, and/or neglected.

And maybe we can feed them some healthy food as well.

I figured out how to start my plants indoors. One day we hope to get a USDA grant for a green/hoop -house, after we really get going on this farming thing. We

I figured out how to start my plants indoors. One day we hope to get a USDA grant for a green/hoop -house, after we really get going on this farming thing. We’ll see…

 

Winter went on FOREVER. I

Winter went on FOREVER. I’m not gonna lie–I did hit a depression wall for a little while, as we got hit by week after week of snow and school closings. Almost chopping off my finger one night while preparing dinner certain didn’t help my state of mind. And while our winter landscape had its own form of stark beauty, we were quickly reminded of why we bought this property when spring finally came.

 

I turned brown dirt into green stuff. I have dealt with heat stroke, stinky clothing, tick bites, snakes, frogs, spiders, lizards, beetles and those dagnabit deer. But working in the garden has provided me with some desperately needed alone time, which is worth all of the above.

I turned brown dirt into green stuff. I have dealt with heat stroke, stinky clothing, tick bites, snakes, frogs, spiders, lizards, beetles and those dagnabit deer. But working in the garden has provided me with some desperately needed alone time, which is worth all of the above. Please stand in awe of the awesome trellises Hubby built as well as our creepily anorexic-looking homemade scarecrow, which keeps the deer from eating my watermelon plants. I’m particularly proud of the corn, which, to me, is like the ultimate American symbol/gold star for surviving our first winter in the boonies of Virginia.

So that’s the grand dream in vague brush strokes.

Here is a photo of horses that we will never own. Because I can only deal with vegetables. I am not kidding when I say that one of the biggest reasons (aside from our lack of money) that we will not be getting one of these beasts is because I am afraid of what happens when one of them dies. Seriously, how do you get rid of a dead horse?

Here is a photo of horses that we will never own. Because I can only deal with vegetables. I am not kidding when I say that one of the biggest reasons (aside from our lack of money) that we will not be getting one of these beasts is because I am afraid of what happens when one of them dies. Seriously, how do you get rid of a dead horse?

More specifically, I’ve given myself three years to learn how to grow stuff, while my partner in crime figures out how to keep the water and electricity flowing and keep the deer out. After that, we hope to have some sort of non-profit situation in place and bring in some individuals or groups of adults with varying disabilities who are interested in learning how to grow. We want to build up an operation of sorts that provides skills, income, and satisfaction to adults with special needs and interests. Maybe we’ll even invite other families like ours to come out and visit and learn about homeschooling methods for kids like ours, or we’ll have our old friends on The Hill come out and help out on the “farm”. Maybe we’ll even become organized and successful enough at growing that we could offer Hillies the opportunity to take part in a “feel good CSA”, where adults with disabilities can participate in the entrepreneurial experience and practice their social skills when distributing the food or selling it at a farmers’ market.

Honestly, when I allow myself the space to say things like “somewhere down the road”, or “in a few years”, it feels like a lot of things are possible. But when I get up and see all that still remains to be done on a daily basis, it feels like we’re a long way from calling ourselves anything official.

GIGANTIC tanks for catching rain water that we got during a fit of survivalist hysteria.

GIGANTIC tanks for catching rain water that we got during a fit of survivalist hysteria.

Because country living requires a lot of daily work. Yes, I know this isn’t Little House on the Prairie, and that there is a Harris Teeter 30 minutes away. But you try keeping a wood fired stove going all day and night, and fight back the jungle that is the default state that our land and everything living on it is trying to get back to, despite our best efforts to tame it. It’s exhausting in an entirely different way from dealing with rude people on the Metro train, loud neighbors, and Capitol Hill one-upmanship-parenting. As our country-bred and born neighbor observed, “now you know why country people look so haggard all the time”.

Hopefully, it will all be worth it. To steal an idea from Rupert Isaacson, once you realize that the boy is the boss, the rest of your life starts to fall in place. We stopped fighting. That certainly doesn’t mean this new life is easy. But we respect the boss, and we are letting the boss lead the way to an unexpected life.

Stephanie - June 18, 2015 - 7:09 pm

Thank you for sharing your life adventure. It is going to be a definite adventure and I wish you much luck in achieving everything! Love to you and your family!

Elizabeth Harms - June 18, 2015 - 10:38 pm

I am so glad you guys decided to do this! It gives parents everywhere a little light at the end of the tunnel … even though you’re in the middle of the tunnel. xo

Cindy - June 19, 2015 - 6:50 am

Wonderful for you! You may want to check out Camphill communities, who’ve existed around the world for 50+ years doing exactly what you are working towards. Maybe you could learn from their experience to make your own path a little bit easier. I think the closest ones to you would be the ones in Eastern Pennsylvania. Good luck to you!

http://www.camphillsoltane.org

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