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

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What I’ve Gained & Lost: Autism Awareness and Acceptance

So I clearly can’t speak for my son. I’m not even going to try. And since I have no idea what he thinks, other than when he is happy, sad, sleepy, hungry, or angry in a general sort of way, I am putting everything that follows within a bracket: I am not attempting to speak for autistic people. I am only speaking for myself, as one of those “dreaded” parents of an autistic child.

To save time, and since time is a precious commodity for me, I’m going to go with a list of some sort, accompanied by James Joyce-ian free-form thought. I’m pretty exhausted today, so bear with me.

Things I’ve Learned, as a Result of Having an Autistic Person in My Family

  1. There is no status quo. Not for very long, anyway. Two steps forward, one step back, and so on.  One day he’s talking more and the next day he’s grunting. One day he’s sitting patiently through a lesson on Pompeii. That evening he’s throwing his toy cell phone and chewing on his shoe. I just go with it. I don’t expect much. I am therefore rarely disappointed, and sometimes pleasantly surprised and proud. Autism simply is.
  2. I’m not sure I will ever miss those days of cuddling and sweet, goofy laughter. Because I think, unlike parents of a typical kid, that my 40 year old son will still love kisses, cuddling, and silliness. This phase will never stop. I win.
  3. There is no end to the range of skills I will acquire in my life, thanks to the rigors and life changes that have resulted from autism. So far, I have basically thrown my expensive and high-status graduate degree out the window and instead exist in a relatively undemanding office job, so that I can use my brain when I’m at home. It should be the other way around, but my home life requires SO much more intelligence, creativity, out-of-the-box thinking, and people management. So far, I have been a professional photographer, a farmer, and de-facto director of a non-profit. I manage people who also have expensive graduate degrees and egos (while I wear my professional hat), and I manage people with intellectual disabilities and big hearts (while I wear my non-profit hat). I have also picked up medical billing and health insurance paperwork skills that I should be getting paid to use (like every parent of a child with a disability). And I can multi-task like a motherfucker. Give me a pile of laundry, a crop to be planted, a Special Olympics form packet, and a document to edit. And that shit gets DONE.
  4. Poop is a lifestyle. In this department, you cannot make me gag or blink. I’ve seen it all. I’ve talked to doctors about all of it. The following sentence leaves my mouth at least twice a day: “Has he pooped yet?” It is sometimes followed by “What kind of poop was it?” God bless Clorox wipes. I’m not saying I’m ready to be a GI doctor. I am saying that it is totally possible to have someone else’s poop on your hands and not be [very] disgusted by it.
  5. My son’s giggle is better than everything. I should totally drop the mic on this one, but I have so much more to say.
  6. When the end of the world comes, my husband and I will simply shrug. This might be followed by “did you defrost something for dinner?” Or possibly “did he poop yet?” Not a whole lot stops the machine at our house. We have noticed that “Other People” (read: Normies with normal lives) sometimes freak out over the smallest minor detours life presents them with, pulling their metaphorical hair out on Facebook and chattering about it with other mommies on the playground. But most stuff in life is So. Minor. Seriously. If your kid is alive and healthy, and no one has lost their jobs or their health, what is the big deal? (Note: I am not referring to the existential meltdowns on social media about the election of Donald Trump. That shit is major.)
  7. It is totally possible to change your life and do something meaningful with it. But it will be a ridiculous amount of work. And you will wonder – on a regular basis – if it’s worth it. And if you’re doing right by your children. See: posts about our move to the middle of nowhere and our farm.
  8. I feel less. I remember sobbing in my husband’s arms one night, when I recalled how my son used to shout at us from the top of the stairs, giggling and screaming “goodnight!” while we shouted at him to go back to bed. These days, I don’t really feel much at all. Some people might think that such a statement is itself sad. I don’t. I rarely think about those nights when he insisted “I want to cuddle with Mommy”. You try remembering your child’s voice after it’s gone–probably forever. It sucks. You would want to feel less too. Unless you’re into poetry. Then you might want to feel all the things. But not me. I can be so much more efficient when I feel nothing. This is why I get so much shit done. Think less. Do more.
  9. How does she do it? Well, I think I sort of answered that in the last one. But I’ll give it another shot. When your day is more task-oriented, you feel less. My to-do list is so very, very long. I can’t relate to people who have dirty dishes in their sink, time to volunteer at their kids’ school, or Instagram photos of their “casually” displayed gourmet meals and feet. The more I do, the less I feel, and the more that gets done. It’s a pretty simple method for getting through my life. And please don’t pity me. I don’t wring my hands about what it all means. I don’t contemplate why some god #blessed me with this special child. I just get on with it. My kids get fed. Our bills get paid (mostly). And pizza kills at least three food groups.
  10. I worry about how my children will feel about their childhood when they grow up. While we have given our daughter a picture-perfect childhood, in some ways, with her private school and rich friends, I know in my heart that she would be getting a more diverse and cultured life experience by living in the city. And my son might wonder if we started our non-profit simply so that we could make meaning out of his disability, rather than simply loving him by leading a simple life. Yes, my vote finally matters, now that we live in Virginia. But damn if it doesn’t suck to drive by Confederate flags and get quizzical looks from other mommies when you tell them that you’re driving into the city for “The March”. And from March – September, my mind is always at least 49-51% focused on farming and fundraising, rather than on my children. True story. This doesn’t make me feel good, no matter how much praise we receive for doing such “an amazing” thing.
  11. I have let go of my “upper middle class” upbringing and life trajectory. Long gone are the multiple trips overseas each year, as well as the theater and symphony tickets. I live in a house that is smaller than the one I grew up in, with cars that are crappier than the other ones in the school parking lot, because we have invested in saving for our children’s future (read: my daughter’s ability to help support her brother financially, and make sure that he isn’t wearing threads and subsisting on crackers, after we are gone). I am totally cool with this…except for the international travel part. Before autism, I really did see myself showing my kids the world the way my parents showed me.
  12. Autism is a pretty handy get-out-of-jail card. You should look into it, or something like it. 90% of the time, autism and the crazy lifestyle that accompanies it IS ACTUALLY the reason we’re late, not dressed appropriately, exhausted, areligious, checking our cell phone during meetings, and pretty much unflappable. Sorry, not sorry.
  13. Autism is the reason I am living a life less ordinary. It is absolutely true that our life does not need to be as complicated as we have chosen to make it. And we completely eliminated any steps we claimed we were trying to take towards simplifying our lives. I am sorry about that. But at this point, I honestly can’t contemplate what it would be like to live a life that’s not devoted to an extracurricular cause. While I sometimes daydream about being one of those people on Facebook who just seem to be happy existing–and seem to be doing a damn fine job of taking cute photos of their kids, posting their marathon times, and going from work to home to cuddles to sleep and back again with no major issues that suck up their free time–I think I would be pretty bored living a life that wasn’t filled with causes that suck up all of my time and energy. We’re doing something about “it”, because we have the ability to do so. And if that means that I’m not crying into my beer, wondering what autism, the universe, and “it” mean? Well good. I prefer activity to contemplation. (Alternatively, because my life is devoted to this particular cause, I have started to feel less and less about the current political situation, and therefore do less and less to improve it. That doesn’t exactly fill me with pride, as an American citizen. But I have to live with that, and leave political activity to people who have time for it.)
  14. Autism is the reason we know how to do so many more things. Because we are constantly trying to save money (because of therapy bills, farms being money pits, saving for my son’s adulthood, etc.), my husband can now fix just about anything on our cars, with a little help from YouTube. He can also fix a broken well spigot on a frozen day, and trouble-shoot just about any house-related disaster we manufacture for him (and I am always finding creative ways to cause the heat or water to shut down). I can grow food – so much food. I know how to save seeds in preparation for the coming apocalypse. I know how to can food, and I’m currently learning how to bake bread (thanks to my SiL). (Ugh. Reading this just reminded me of the extent to which my life is playing out according to traditional gender roles. Ewwww.) My daughter is probably halfway to a degree in special education, through sheer exposure. I can offer people advice on filing for Medicaid. Next up? Pigs, chickens, goats…and maybe bees. Because there is so much more room for us to go full-on survivalist.

The engine is slowing down, so I’m just going to stop. I didn’t expect this to go on for as long as it did. I’m sure there’s more. But I need to go fill out some paperwork.

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). 🙂


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.


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.


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

[…] Surviving the Middle of Nowhere […]

For a Good Time, Call Us. Our Standards are Pretty Low.

Lately, it has occurred to me to that we don’t give a shit about much, and that is a good thing.

Of course, we shower, keep the house clean, and pay our bills. We feed our children and tell them that we love them. We schedule the right doctors’ appointments and react appropriately to serious problems when they arise. We are good citizens and neighbors. We know what is going on in the world, pay attention to the news, and are even up-to-date on the latest memes being shared all over social media.

But, as illustrated when a friend came over and apologized when her kids spilled something in our kitchen, our standard is generally as follows: “If no one poops on the floor or breaks an arm, it’s been a good day.” Because it would require either that level of mess or medical emergency to cause us to react dramatically to just about anything that happens in our lives.

And there is a surprising amount of satisfaction in this sort of existence.

I recently attended a voluntary leadership training class at work. I didn’t have to go. My boss certainly isn’t the type to encourage anyone to “drink the Kool-Aid”. But I felt like I should care. I felt like it might be helpful to pay more attention to “these things” while at work, and potentially in our new farm venture at home. And while I dutifully went through all of the in-class exercises, and listened attentively in my “Action Learning Group”, the fact was that I did not fit in. I do not have anxiety about the quality of my leadership, or the way people perceive me at work. My modus operandi is to get the job done with courtesy and attention to detail. Other than that, thank-you very much for the paycheck and I will be getting back home to my “real life”, while you build your career at various after-work events and wring your hands about inspiring your team.

My job is a necessary spoke in the wheel that forms my life, but it is a spindly spoke, at that. My out-of-the-office concerns (the doctors appointments, the negotiating over schedules between my husband and my son’s teacher, our never-ending to-do list for our farm and non-profit, whether my son has pooped today, getting the financial aid applications in on time for my daughter’s we-could-never-normally-afford-this school, and whether the water filter in our house is doing its job) simply feel so much more real than my actual job, most of the time. Of course, if I were to lose my job, this would totally screw up our lives. But in terms of how I prioritize my anxiety and my level of “give-a-shit”, let’s just say that my internal monologue did not match my outward appearance during leadership circle-time. I will never be able to lead my way anywhere in the corporate world, but I can lead the hell out of my personal life, People. And the rest of it is simply noise.

Someone recently reminded me to “have a good weekend–given our situation”. It was said with good intention and a lot of reluctance–an almost eyes-squeezed-shut wish that no more disasters befall us during the coming weekend, after a week in which we learned that my daughter has some fairly serious allergies that we need to deal with. I had spent the previous night vacuuming out her entire room, rolling up her carpet, and sealing up all of her bedding in about $300 worth of gear from Bed Bath & Beyond, before washing her entire set of pajamas and stuffed animals, and after feeding all of the animals in the house, including my beloved children. In fact, I was feeling pretty darn victorious after putting another day to bed and getting up to face a new one. I honestly didn’t see why it was necessary for someone to cringe at my life. Things were going pretty well. No blizzards. No hospitals. No poop.

The snow FINALLY melted in our forest, and my son was thrilled to be able to take his daily walk again.

The snow FINALLY melted in our forest, and my son was thrilled to be able to take his daily walk again.

In fact, during that same week, I got to enjoy a beautiful cup of chai in a hipster coffee shop in the city, meet with a potential new board member for our non-profit at a foodie sandwich shop in the suburbs, and take a beautiful and rare 30 minute stroll through downtown Warrenton, VA after another farming class. That 30 minute walk, during which I got the chance to compliment another mother of a child with special needs on her son’s good behavior, and talk to a shop owner about the artwork she was selling (which was created by her neighbor’s autistic son), was pretty much all of the reintroduction into the outside world and its civility that I needed to recharge my cells to get through another week. It really doesn’t take much. I don’t know when I’ll get another 30 minutes of alone-time in the real world, which made that half hour that much sweeter. And I am saying this a born cynic who cannot stand all of the #blessed and Life is Good paraphernalia scattered throughout the Internet and on people’s car bumpers.

In fact, the highlight of my weekend was a successful last-minute dinner at Denny’s on Sunday night. We didn’t get any invitations to Superbowl get-togethers (I think people know what an undertaking it is to find weekend child-care for us so that we can schlep to the city. Or perhaps they sense that we don’t give a shit about football…). So after spending the afternoon starting a bunch of broccoli seeds in my basement while streaming Netflix (a rare, end-of-the-data-month extravaganza where broadband Internet does not exist), my husband and I bravely took the kids out to the height of American gastronomy, and things went SO WELL. The place was dead because the rest of America was watching the Superbowl. And we managed to get a circular booth in the back, where we could prevent my son from bolting or disturbing the other remaining customers. The kids were well behaved, we didn’t trash the table. My son didn’t have any toileting issues. No one had to take him for a walk while we waited for the food to arrive. And we didn’t have to apologize for any mishaps.

My daughter felt that our trip to Denny

My daughter felt that our trip to Denny’s called for a special outfit.

It was a GOOD NIGHT.

The point of all of this is to state unabashedly that I am pretty #blessed to have pretty low standards about what constitutes a successful day.

I realize that I am starting to look like a “Special Needs Mom”. I went to the bathroom during that leadership class and realized that I was several months overdue for a gray-covering trip to the hair salon, and that I was the only woman in that class who was wearing flats and a sweater. And that did bum me out a little–I still have one toe dipped into the hypersuccessful waters of Washington DC and know what my peers look like. But at the same time, I’m wasn’t standing in front of that bathroom mirror, putting my hairs back in place and reapplying my make-up before heading back out to cubicle-land. I washed my hands and simply got on with it. And in my daily lack of giving a shit, there is a freedom that I wouldn’t trade for better looks and a more fabulous life. I save my worries, attention, and energy for the things that actually matter. After moving out of the rat race into a fixer-upper kind of life in the country, I think I finally understand that I don’t need much more than an uneventful trip to Denny’s to feel satisfaction about my life. I’m classy like that, I guess.


The Stories We Tell Ourselves

So if I told you that we went to an outdoor pool, hit some water slides and a lazy river, and followed it up with a dinner at Ruby Tuesdays and a family movie, you’d probably categorize that as a pretty good day, right?

In reality, the day went more like this:

We waited as long as we could for the cheaper evening entrance fee at the pool, but seven minutes before the price dropped, my son was knocking over everything on the counter. Despite hoping that the teenage employee staring at us would take pity and pretend that it was actually seven minutes later for the benefit of our clearly anxious, autistic son, he didn’t. We paid the full price and went in. Once in, we were really excited about all of the water slides spread out before us, but quickly learned that we would not be able to wait in the water to catch our son coming down, due to strict pool regulations. No breaks for special needs families. So I walked him up to the slide and then ran (yes, I was allowed to run alongside the pool, but not wait calmly in the water for my son to slide down into the safety of his parent’s arms) into the pool to be “nearby” when he landed. Later on, my son’s fabric swim diaper gave out and disappeared somewhere in the pool; we prayed that he would have no accidents. At some point, even though one parent was completely devoted to managing him flop and scream happily in the three foot deep kids’ section, the lifeguards demanded that we put an approved, gigantic life vest on him, because his floatie was not good enough (liability fears about a kid with special needs, I’m guessing). And the next time we tried to send him down a water slide, they wouldn’t let him go because kids aren’t allowed to wear life vests on the slide. WTF? So I can’t catch him to keep him from drowning, and I can’t put on one of your required vests so that he doesn’t sink at the end of the ride down?

Once we got to the restaurant, there were three emergencies related to having swallowed too much pool water, and we eventually walked my son through the restaurant in a t-shirt and underwear because we ran out of shorts. My husband waited in the men’s room, while I ran out to the car to find supplies, and my five year old daughter sat alone at the table. The waitstaff were extremely polite, and said nothing about any of this. We got our check as soon as possible and drove as quickly as we could to the drive-in movie theater. We were already exhausted.

We had planned on the drive-in because we could give my son his nighttime sleep medication and then have him pass out in the car, where we would all sit to watch the movie — this was pretty much (or so we thought) the only way we thought we could all go to the movies together. Unfortunately, we got there too late; sold out. My daughter was pretty heartbroken, as we had been talking all day about ending one of our last summer days with a double feature that we could watch outdoors. We made a last minute call to hit the gas and drive to the nearby “brew and view” for a 9pm showing of Shaun the Sheep.

We stood in front of the ticket booth, my ~60 pound son passed out on my shoulders, as my husband asked whether we could a) take a sleeping child in, and b) pay for only the three of us, since the fourth was not even aware of anything going on around him. Instead of acknowledging our tricky and exceptional situation (and perhaps our desperation to do something normal on a Saturday night), they told us that he would have to sleep on our laps in order to avoid paying for a ticket for him.


My husband carrying my son (back in his damp bathing suit, because we thought the underwear and t-shirt bit might make us stand out even more than we already did)

We did as we were told. Even though only four other people occupied the entire theater besides us, we awkwardly draped our almost eight year old son across our laps, put his head on my purse, and drank our sodas over him, feeling like asshole parents. Our daughter, fortunately, was blissfully unaware. She got to see a move with her whole family, so this was a great day for her.

I sat in the dark theater, contemplating the strangeness of this victory. Yes, we had a jam-packed summer day, a day that would have been a lot for the average family. And we had gotten through it, damnit. We did it. This was a good thing, right?

But the whole thing still kind of felt like jamming a fat book into an already packed bookcase. We could see the slot — it was sooooo close. We were prepared…mostly. We had packed back-up clothing, medication, and willpower. But it took a lot of pushing and squeezing to slide that book into place.

With my son lying across our laps and my daughter giggling at the movie, I tried to spin it that way that all families like ours do. We declare our special, but small victories on Facebook, we laugh at the alternate versions of holidays we celebrate, compared to the Rockwellian versions our peers claim to have had, and we laugh off the crazy accommodations we make (and hope others will make on our behalf) to get through each day. And this day, despite all of the non-traditional elements, did fit into the definition of a traditional weekend day spent by an average middle class American family. By golly, this was enough, wasn’t it?

I suppose. But it also felt a little like a lie. I mean, it’s a good lie that we could tell ourselves. “We can be normal. We can totally do what they do.” But underneath it all, I still recognize it for what it is: an Olympics-worthy hurdle through all obstacles, with the reward of only a laugh and a pat on the back at the end of it, as well as more dirty laundry and the knowledge that we have to get up and do it all again the next day.

But really, what choice do we have? For families like ours, we have to really, truly, actively, willfully choose to be happy. It doesn’t come to most of us easily, that’s for sure. We must seek it out and declare it good enough to fit the definition of “happy”, when we strike it. And that’s just how it has to be, I guess.

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!

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