School 😱

You know what, it's hard enough sending your toddler to preschool for the first time.

It is even harder doing it when they have epilepsy. You have to find a school willing to take on that risk, prep and train teachers, and try hard not to freak the crap out.

It's EVEN harder doing it on a keto diet where you're now packing lunches and snacks trying to make them toddler-friendly, easy for teachers to manage and keep an eye on, and try to match what the other kids are having.

AND THEN THERE'S A FREAKING PANDEMIC HAPPENING.

But here we are.

M has just finished his first week and a half of preschool. He has, until now, always been at home in the care of either a parent or his nanny (with one or both of us usually working at home as well). It's a really, really big change at a time when school is already a terrifying and uncertain prospect.

We kept him out of anything resembling daycare last year at the request of his epileptologist, who felt that the less germ exposure he had at that age (leading to illness, leading to severe status seizures), the better off he would be developmentally, and we agreed. But he turns three in less than two months and while his speech therapy and physical therapy have been going great, it was clear to us that he needed some peer pressure to really make additional progress on things like jumping, standing on one foot, using scooters, and enunciating his words more clearly. And beyond that, social development is a thing. It's pretty much the point of preschool and daycare. And because we have been so conservative and have kept him out of group settings to limit his germ exposure, he's behind on that.

So back in February - in the BeforeTimes - we decided it had to finally happen this fall. We were planning on gambling with our district's public preschool. They cater to kids with special needs and prioritize them for enrollment (and free tuition), but since he was turning three after the school year, there was no guarantee he could enroll this year and on top of that, we were still a little concerned about cold and flu germs circulating, and thought about holding him out til the spring. Our daughter's preschool, which we love, could have been a better choice but they weren't willing to take him on with the seizure risk. But then! At a town event we met the head of a Montessori preschool, who we clicked with quickly, and when she told us she had epilepsy in her own family and that having him in her school didn't scare her one bit, the game changed. We took a tour the next week and enrolled him immediately. We were so excited for him, even though September seemed very far off and like plenty of time to get ourselves used to the idea of sending him to school for the first time.

And then the pandemic hit.

Now, as terrifying as absolutely everything about COVID-19 is, and our very real fear that if M gets it, it will set off a bunch of the nasty generalized tonic-clonic seizures he often gets when ill or feverish (and also my lungs are kinda crappy and also IT IS A SCARY DISEASE), the sort of funny thing is that for the first time, the rest of the world is taking all the hygiene precautions we're used to taking to protect M! From October to April every year we are frantically hand sanitizing, washing, laundering, Clorox wiping, and avoiding high-touch indoor spaces like museums and play places. We've been yelling at our daughter "DON'T TOUCH YOUR FACE" since M was diagnosed. We've avoided socializing with friends with young kids if they have so much as a runny nose. We get our flu shots religiously. So basically for us, this is a standard cold and flu "hunker down" season, except with masks, but EVERYONE ELSE is taking these precautions too - including at schools. So ironically, as long as our local COVID numbers stay low, this may actually be the safest M will ever be in a group environment.

The school he's attending is a private school with a lot more resources (both financial and land-wise) than the public schools, so they can take a ton of precautions - they cleared extra land to build a second playground to keep each of the four classrooms separated even outdoors, they have a "greenhouse" in front of the school entrance where kids wash their hands, don a school mask, and disinfect the soles of their shoes, and they've carefully separated each of the four classes and teachers so that there is no cross-contamination. Interestingly, they also do the Montessori thing of mixed-age classes... and we found out that they also go through Kindergarten.

Well, our oldest is a new Kindergartner, and we were looking at doing full remote schooling in our district to try to keep her safe from the germs at school... but at the same time we'd have to "pod" with a few other families since we work full time and couldn't manage her Zooming from home all week; not to mention her need for socialization. So we were trying to cobble together this complicated plan when it occurred to us we could put her in school with M in the same class and constrain our entire family exposure to just the 8 other kids and 2 teachers in her class.

We are enormously privileged that this is even an option for us, and as a bona fide social justice warrior I feel torn with guilt that we're not investing our energy into making our public schools work as well as they can this year (though all credit due to them - they've done an AMAZING job here trying to make the best of a crappy situation). And not going to lie, we were really looking forward to paying one less childcare fee this year.

But after so much time at home without his peers, it was crystal clear to us that M really, really needed a school environment this year for his development to keep on going, and Dravet does not give you the luxury of waiting; he could easily begin plateauing any day now. We owed it to him to invest our entire family risk budget (and a good deal of our financial budget) into making this work. So in his sister went, in he went, and now he's officially a preschooler.

He's going through a lot of adjustment (and fair enough) but every day has been better than the last, and his teachers have been great in working with us on ensuring he keeps to his diet at school - extra complicated when for COVID risk mitigation reasons, you can only email teachers rather than speak to them face to face. But we're making it work, and he's coming home chatty and happy every evening, and we are so, so hopeful that this is going to be amazing for him.

And while it's not the kindergarten year we'd envisioned for our oldest, she is settling in as well, enjoying life as the oldest in her class, and impressing us with how she looks after her little brother to make sure his teachers are enforcing his diet.

It's a hell of a year and there are no good decisions, only less bad ones. It's impossible to solve a global pandemic on a personal or even local level; the structures in place that are supposed to be able to deal with problems on this scale have utterly failed us. Every family is making hard and complicated decisions this year. Here's hoping that ours do indeed to turn out to be the right ones for us, that we do stay safe, and that we're on the other side of this by the time the next school year rolls around.