• Casey

Quirky Kid Quarantine: What did not work.

Well friends, we made it through another week. And we did so without open schools, grandparents, babysitters, therapists' offices, or daycares to assist us, at least in the fine state of Michigan. And I would argue that the fact that you are reading this likely means you and your children are still alive, you are sober enough to decipher the words on the screen (if you aren't, no judgement, we can hang out later), and that some way, somehow, you made it across that Friday finish line, even if you thought you couldn't. Time to give yourself a million pats on the back.

Although we made it through, week three was HARD. The pandemic reality that had been floating around in my head like fine snow, finally sifted, settled, and started to accumulate, weighing me down in a bodily sense. On Thursday, I received a text from my son's preschool that they would simply not be opening again this school year. And with no preamble or preparation, that was definitively that.

As I settle into the reality that my young sons will be home with me for at least five more months, I thought it would be a good moment to reflect on what has not worked for our family so far in this surreal quarantine journey. (You can see what has worked here.)

What has not worked (or "Still in Progress")

Me doing 100% of the childcare

The first week of quirky kid quarantine I tried to be a hero. Donning my most rational cap, I thought to myself, Well, I don't have a job, my husband is working his normal hours, if not more, and so logically, I should be taking care of the kids full time (7:30am to 5:00pm). In this scenario, however, I forgot to include a very important variable: How I do as a human when I take care of T for hours and hours on end without breaks. The answer, to put it mildly, is not good at all.

Because, unfortunately, parenting my 5-year-old son who has Sensory Processing Disorder, self-regulation issues, and demand-avoidance, often feels like being an amateur(?) lion tamer in a circus ring. Even if the lion seems calm, and like he is having a grand old time, environmental sounds or stimuli or mysterious triggers inside of his atypical brain wiring could set him off. So the lion tamer always has to be aware of the surroundings and hyper-vigilant to the lion's emotional state. The lion tamer must stay intensely calm and steady, always aware of the energetic signals she is emitting in the ring. If the lion gets agitated, the lion tamer does not try to talk him out of his behavior, rather she makes no sudden movements, uses the right tone of voice and facial expression to signal to the lion that he is safe, yet she is in control. But there are moments in the ring where that lion tamer does not know what direction the lion will go. Will he pounce? Will he flee the ring? Will he lash out? Regardless, she stands her ground, breathes deeply, and trusts that the relationship with the lion will get her through this moment of intensity. She loves the lion and the lion loves her. But she cannot let her guard down, because at the end of the day, when the lion is upset or scared, he can't control those claws and teeth very well.

And this my friends, is why I need breaks. Not simply because I get bored playing games or doing art or pretend play (although I do), but because when I am with T, I am a lion tamer. And lion taming, as professions go, is intense AF. It's wort that sits in the body and in the soul long after that tense moment in the circus ring is over. If you have a child with similar challenges, this might resonate with you. Or if you have a five-year-old who is having a hard time adjusting to being caged in a small space, without playgrounds and playdates or school, you might have a newly-minted little lion on your hands.

So, after trying to be a hero and taking the kids by myself all week, the first week, the outcome was what we might have expected: not good at all. By Sunday, I was telling my husband that I was ready to abandon the family - pandemic be damned. We took that as a not-so-subtle sign that - at least in our family - me handling both boys all day, every weekday, was simply not going to work over the long term. Because, yes, having an uninterrupted workday is nice, but having a wife who is ready to walk out the door and run screaming into the moon-lit woods like a mad woman, branches tearing at her face, never to be seen from again, is not.

So J explained to his boss that with Michigan's "Shelter in Place" order we had lost all our support systems - occupational therapy, babysitters, preschool, etc. - so he would need to take a break during each workday between 12:30 and 2:30pm to relieve me of the boys. This means J now has to log back in the evening to make up for the time, but it has brought our family back from the brink. My husband gets time with the boys and to get his body moving and up from a desk for two hours each day, which he enjoys as well. Silver linings.


We aren't doing the best job of eating. Especially when T's eating therapy requires both exposing him to three new foods at each meal (a vegetable, fruit, and protein) and doing "food school", which is structured by his in-person therapist and involves exposure and pretend play with eight new foods in the clinical setting, at least twice a week. Obviously this time - when going to the grocery store can produce panic attacks, food supply chains are being interrupted, and the thought of sitting across from a therapist and spitting pieces of food into a bowl feels life-threatening - is not super conducive to making progress on his eating.

Although we are doing telehealth with his therapist and I do food school with him at home, and she guides us through the screen, it is difficult to get him excited and on board with the food I have in the fridge and without her there with us. Second, I am an exhausted lion tamer, so holding the line on T doing his "learning" about food at each meal has felt like an additional burden and I have let my guard down with this. In tired moments I have become more lax - let the boys eat goldfish in the car, or let T eat snacks on the couch. This may not seem like a big deal, but in our house, part of the therapy is training T to sit still at the table while he eats, because it is hard for him with his lack of postural control to do so.

Fortunately, T's eating has held steady - he seems to be getting enough calories and continuing to eat the few things that have nutrients in them like chocolate milk, peanut butter, and sliced apples - but he certainly isn't making progress forward. I worry that at any moment, if he starts to get anxious about the pandemic or change in schedule, that he will regress dangerously like he did when we moved. This is probably the thing that makes me most nervous over the long term because food school is most effective when our therapist

does it.

And finally, my own eating has been a shit show (figuratively). I have been eating with the boys during all their snacks, and can't keep up with making healthy meals at a fast enough clip to stay ahead of the appetites in the house. On the regular I have been eating things like frozen cookie dough, frozen cupcakes, pop tarts, cheez-its, goldfish, and bowls of whole milk and frosted flakes. My husband assures me that this is in line with the behavior of the rest of the country - why else would our local grocery store be out of two things: toilet paper and ice cream? - and that something has to give in times like these. Sugar is apparently my drug of choice in a crisis. Who knew? I am trying to trust that as we settle into a new steady state - as we did just a few months ago after our move to Michigan - we will find our nutritional balance eventually.

Sterilizing "Frequently Touched Surfaces" and Not Touching Your Face

The first time I came home from the grocery store since the pandemic had really taken off, I brought a bunch of bags into the kitchen using gloves, ready to wipe them down with Lysol and antibacterial wipes. But as I stumbled through the door, my 15-month-old and 5-year-old came racing in, excited like it was Christmas morning, and before I could stop them, they started unpacking the bags, inspecting the new snack foods, and racing into different rooms with cheez-it boxes and squeezie packs in tow. My husband took the boxes away and helped wash the kids' hands, but they had already put their fingers in their mouths by the time he got to them.

This scene is a microcosm of the level of success we have had with following CDC guidelines for sterilizing and keeping hands off face and out of mouth. How does one sterilize "frequently touched surfaces" when you have a sensory seeking 5-year-old and a 15-month-old who is still exploring the world with his sense of taste and mouth? Every nook and cranny and object and body part is "frequently touched" in my house. From the recycling bin, to the inside of the toilet bowl, to the skin between my toes, to the un-swept crumbs on the kitchen floor - it is all being touched. The contents of every drawer and bowl are being emptied at a faster clip than I can restock it, let alone sterilize it.

My older son literally regulates (calms) himself by licking his brother's face or sucking on my arm. T is an oral regulator. Since we got rid of the pacifier a little over a month ago - and in the midst of this anxious time - he now sucks on his clothes, leaving large wet circles around his shirt collar, leaves his fingers in his mouth while watching shows, or chews on a chewelry that then the baby picks up and puts in his mouth. I have started giving T sugar-free gumballs to keep the spit in his mouth and the fingers out. And this week, this hard third week, I let T have the pacifier at a time he wasn't in his bed, because he was dysregulated and I was simply burned out. The lion tamer relented because she needed a breather from the ring.

In the end, while I continue to wipe down counter tops, door knobs, and faucet handles, in the back of my mind I know that my kids' bacterial residue is spread on every square inch of my house. We are doing the best we can, so I suppose we just have to be OK with that. Hopefully social distancing will mean that the spit we share and roll around in is corona-free. Fingers crossed.


Things are likely going to hover between "not perfect" and "shit show" for the foreseeable future. And really, isn't that always the case with young kids, with or without "individual differences" and developmental challenges? I share these anti-wins because I think it is important to recognize that this is a long-haul, work in progress that will involve failures and continual re-assessment. For example, your equilibrium may not be to divide parental labor like we did. The point is that every family will have a different balance and that it might take time - perhaps weeks - to figure out what the sweet spot is. Or for the families that only have one parent (you are a hero, by the way), to realize that you are doing your best, and that is good enough, even if your house is coated in bacteria and your kid(s) and you are surviving on pop-tarts and goldfish alone. It's OK. These are hard times. But you are keeping your kids safe and healthy, and at the end of the day, that is all that matters. That's all that has ever mattered.

What are your wins and anti-wins? What are you doing to stay sane? Would love to hear about your pandemic equilibrium or lack thereof.

Stay safe.

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