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

Masthead header

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.

Your email is never published or shared. Required fields are marked *



M o r e   i n f o