Home Sweaty Soapy Home

Every morning I unlock four gate latches to get into the kitchen, where I make myself coffee. I’ve been waking up at around 5 am, much earlier than I’d like, but my body bolts awake with a low level anxiety coupled with a desire to have this time to myself before everyone else is up and we start yet another day of all being in this house together from morning to night, the new normal most of us are experiencing.

I get my coffee and go back upstairs, trying to be as quiet as possible so everyone else remains asleep and I have a chance to do a short meditation, focusing on my breath and the birds singing outside the window, and then to be on the computer. I’ve been writing most of the last six weeks of posts on the phone, because getting to sit at my desk with a computer screen only happens for a short period at this early hour, while monitoring V can be done while partially engaged in another activity; I can piece together some writing time throughout the rest of the day.

Being stuck at home 24/7 with a severely autistic son is a level of overwhelming it’s hard to fathom and I long for others to understand. Yet it’s a delicate dance in how much I want to share – I seek empathy rather than the slightly disguised horror or pity that often are the reaction when I provide the details of what days are like with a teen who is resistant to google classroom and has major problems staying focused for long on much of anything, constantly looking for distractions that tend to involve deconstructing or re-creating the space around him in a way that comports with his unique feng shui-OCD demands.

I remember participating in a small playgroup another mom with a son on the spectrum formed when V was very young, and going to her immaculate beautiful home every week. We would meet in her basement, where V would pull out all the toys and other items she had carefully organized in bins on the wall, while her own son stayed hidden in a small teepee, trying to avoid the strangers who invaded his house on Sunday afternoons. I’d apologize for the enormous mess V created, but her response was always one of delight, especially since her son wouldn’t touch the dozens of carefully curated playthings she had purchased. “It’s wonderful that he’s so interested in everything!” she’d exclaim. I try to keep that in mind, that he is more than a sinewy and sweaty tornado that takes hold each day. He’s interested in everything in his own unique way that is often hard for his caregivers/housekeepers to appreciate.

I’ve completely stopped reading the articles on families struggling to hold down jobs and take care of kids, the ones who say they are overwhelmed or getting burnt out while also celebrating the time together with board games and old movies and take out or whatever else is making family life bearable. You have no idea I think, while trying to cultivate compassion because I know everyone is making adjustments, just less extreme ones than we have here when forgetting to re-lock a cabinet or room can create havoc and 5 loads of laundry a day is the norm.


Even that detail – does it make your jaw drop? Am I being too dramatic? I don’t want to tug at your heartstrings with how difficult it is, and yet, I do want to open your heart a little more to how different it is for the millions of us with kids with more complex developmental or mental/emotional challenges who are having a really hard time right now. I know other families in far worse shape, so I’m grateful for our relative safety and health and that if it would ever stop raining we can spend time outside. I am grateful that B is hanging in there, a helpful loving brother and son and wonderful young man when he eventually emerges from his room. Our house has love as well as enormous messes so there’s that.


Each room has turned into its own little world. There’s the Spotify Porch and Book Sculpture Park, where V can spend hours listening to music and looking out the window, while also getting into everything that lives in that space. In a small house each room serves multiple purposes, and the porch holds recyclables, and other things that were planning to go outside the door b.c. (before Coronavirus): books to drop off to the used bookstore, and donations that were ready to give to Vietnam Vets; the other food he brings in from the dining room to stay sated as part of his front row view of the world going by because while the front door is locked the door into the porch allows constant access to the rest of the house, at least the part that isn’t locked up, most notably…


Fort Kitchen. Those latches have been part of our life here for as long as I can remember.
His impulsivity (like many more typical folk) is most pronounced around food, revealing the id many of us tend to suppress. Wouldn’t we all like to pour maple syrup all over our food and eat spoonfuls of jam, bread be damned? Or grab half a loaf of bread and spread heaping spoonfuls of butter on it? Likely you have more sense of restraint, but because he doesn’t there are eight latches: two on each of two gates on each door, as well as a lock on the snack container that lives outside the kitchen, in a hallway where the hooks now hold our masks ready for each walk or the weekly outings to the store.

The Water Park/Spare Bathrooms are empty of everything. Bins of soap and shampoo are now kept in lock up, which gets complicated when you’re washing your hands 20 times a day. From the upstairs bath, soap would regularly end up out the window, along with washcloths and spare body parts from the visual chart for showering that he doesn’t follow as well on his own as he did when we had home therapists helping him. (the number of skills being lost continues to be terrifying) We finally had to seal shut the bathroom window because so many odd things would end up on the driveway below. Now it is a very sparse space of running water and basic plumbing.

It’s okay to laugh at all this. It’s essential if you are living with it and helpful in just hearing about it. Finding it funny is the best way to stay sane and to keep from wallowing in pity or sorrow or disgust. To laugh and then get out the broom and dustpan, unlock a room, grab a few precious squares of paper towel along with the bleach that is omnipresent.  It’s still a mess but it’s relatively sanitary.  Exhausting yet happy, for the most part.  Different for sure.  By the time we make it to Bedrooms  (V’s empty, ours filled with his stuff, B’s off limits) we all sleep soundly if not enough and try to gather resilience to make it through the next day, whenever it begins and however long it lasts. 

10 thoughts on “Home Sweaty Soapy Home

  1. I never will totally get it – but your presentation helps. It seems to flow out of you. Jessie read it – and wants to get a subscription. I guess we sign-up somewhere? jessieg6616@gmail.com

    luv

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  2. Yes Dan and Jessie, there is a subscribe button on the blog post when you’re on the site. Thanks so much.
    ❤️cousin Joan

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  3. Your humor and love shine through your beautiful writing, as well as the daily, and heartbreaking, challenges you face.
    Sending love your way!

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  4. I ride the waves of your story, Joan, my boat pulled along by the rhythm of your writing. The beauty of your language contrasts with the tough daily reality you describe, making each more poignant. Sending lots of love!

    Like

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