Stuff is still happening

I think the wildest thing about locking down is that it feels like there’s nothing new to report ever about anything. Stuff is happening, sure, but it’s like being in a major depressive downswing, where it’s all happening in this void of nothing. Days are all bleeding into each other, to the point where I told like three or four separate people today that Monday is Memorial Day.

It’s not. 

Stuff is happening! It just is happening in this void that’s usually relegated to memories. Like you know how most of your memories kind of bleed together so you know that a thing happened, but you don’t know specifically when? That’s what it feels like. 

It’s like my memories of my choir tours back in college. In four years, I went on twelve choir tours in a huge bus driving all up and down the eastern seaboard of the US, and while some of them are very specific place-related memories (like obviously, that time we went to the beach on Cape Cod was during a tour on Cape Cod), most just sort of blur into a “I know this happened, but I don’t really know when or where.” When did I stay at that person’s house? What year was it? Was it in Pennsylvania or New York or Virginia? Was it in the spring or the fall or the winter?

(if you were in A Cappella Choir at ENC, you know what I mean)

Stuff is happening. Sam’s birthday happened this week! I have a six-year-old now, and it’s crazy. For the most part, there’s very little difference between Sammy the six-year-old and Sammy the five-year-old, except that Sammy the six-year-old has Minecraft guides that he likes to read aloud to us at all hours of the day and night, where Sammy the five-year-old did not have such guides. 

I think he had a pretty awesome birthday, all things considered. We’d been promising him for something like two years that we’d have his birthday party this year at our local indoor play place called Luv 2 Play, which is just that kind of McDonald’s Play Place gone wild, Discovery Zone type adventure land, with ball pits and climbing structures and arcades and pizza! It’s like Chuck E Cheese but so much more! And they’d literally just opened a month before the lockdown went into place and then the lockdown happened and so much for that. 

So I knew the potential for disappointment was high and because of that, I went a little overboard with the stuff we could do. Our local police department had a program in place from about the time the lockdown started where they’d come to your house for your kid’s birthday, lights flashing and sirens wailing, and I signed us up for that. Sam was super shy about it, but he was also beyond happy, and he got to sit in the front of and pretend to drive a squad car (his comments on it: “Wow, there’s a lot of stuff in here! It’s a mess!”). 

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I baked him a cake, as I always do, and even though it looked sort of a mess, it tasted great. Black frosting, as he requested, plus Minecraft decor, as he requested, though my favorite part was the Lego brick candles I found on Amazon. Guarantee I wouldn’t have thought to use those if I hadn’t been scrambling to try and find ways to create a spectacular cake for my big guy to help him with what could’ve otherwise been a really sad birthday. 

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AND. His best friend’s mom got in touch with me and we planned for them to drive up to our house so Sammy and his best friend could see each other. I think that was my favorite part of the day. Sam, being six, says that his favorite part of the day was getting various toys, but I think what really sticks in his mind was seeing Hunter and getting to talk with him, even if they had to stay apart through a car window. 

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So it was a success, despite everything, and I’m relieved. 

Stuff is happening. We broke down our old couch and chair because the furniture outlet we’d gone shopping at literally days before the entire state shut down called us and said, “Hey, are you going to have your couches delivered or what?” 

We’ve needed new couches for ages because our living room furniture was not only purchased in the era of “well, the Båckachë model from Ikea is affordable” but has broken in multiple ways and multiple places. It was ugly and stained and had ceased to be comfortable by any definition. 

And we had a pretty nice tax return this year and figured, hey, Kyle’s gainfully employed and even though he has to work from home now, we should be fine through this pandemic!

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Anyway. We needed new furniture, so we bought new furniture; but when everything went into lockdown, we thought we’d have to wait until whenever restrictions were lifted completely to have it all delivered (since we just did what’s called “threshold” delivery, which means they basically yeet the furniture at you from the back of a moving truck). But no, apparently they’re doing deliveries again, so we’ve broken down the old sofa and rocking chair and made our living room empty and ready for a sofa, loveseat, and coffee table. 

97101404_10157206797540592_2838004347839709184_o(it looks a lot emptier now that we’ve cleaned up all the toys)

It’s wild. Even in this time that feels like miles of endless nothing, I’ve somehow reached the age where I have a coffee table. A really nice one, too! 

Isaac is still having his ABA, which is great. He’s so much calmer and happier, and he’s been getting along so much better with Carrie. He’s gaining words, and though he doesn’t necessarily use them unprompted (i.e., he won’t do like Carrie does and point to a picture of something yellow while saying “yellow”), he still has them, and that’s important. He doesn’t melt down as often as he had been, and he’s just… he’s really doing so well. He’s still very obviously autistic, and I’ve made it clear to his therapists and their office that I am perfectly fine with him stimming, with him being obviously autistic; but he’s learning to communicate better, which is helping him both in the short term and in the long run. He’s better able to express his wants and needs, and because of that, he doesn’t get frustrated so easily. 

Which is good. 

And then for me. Despite not being able to actually physically go to a doctor’s office, I had a breast cancer risk assessment screening thing last week. It wasn’t a huge deal, just something my OB-GYN had recommended because I have a lot of aunts who’ve had breast cancer and other cancers, on both sides. When that’s your family makeup, you want to get yourself assessed, just to make sure that you’re not missing something.

To nobody’s surprise, I’m sitting right in the middle of the high risk category, which doesn’t necessarily mean that I’m 100% going to get breast cancer, nothing I can do about it, but rather that I need to start being screened more frequently as soon as possible so that if anything does pop up, it can be caught ASAP and stopped before it turns into something unstoppable. 

Naturally, with the world locked down, that basically means that I have to hurry up and wait. I received a packet in the mail talking about my risks and medications I could take (that decreased the risk of breast cancer, but also increased the risk of blood clots and uterine cancer, so I’m like ??? that sounds like the opposite of helping?), and I have a note on my chart about getting a mammogram as soon as I can. And I get to follow that up with an MRI and just alternate mammograms and MRIs every six months until I die or someone chops off my boobs or something. 

(true story: if I could donate some boob to someone who wants to have more boob, I totally would)

All of this has happened in the last week, since the last time I wrote something, but it feels like nothing is happening. Tomorrow is Saturday, I know, but beyond that? Who even knows? What even is happening? Everything is happening, and it’s all a big, meaningless void of nothing. 

And yet, I’m still in favor of keeping locked down as long as it takes to get some sort of actual plan in place or get our act together on treatments and vaccines and whatever the fuck we need because this is not a pleasant illness. I hate being locked down, and if by some miracle, there was no more Covid-19 tomorrow and we could all frolic about freely, I would be the first one out of my house. I want my son to be able to go back to kindergarten and see his friends and finish out the year. I want to take all three of my kids to their well visits without having to wrestle with masks. I want to know without a shadow of a doubt that our trip to Disney World in November is happening. I want people to be able to go back to work. I want to get my roots touched up. 

Like that’s the thing. I feel like there’s this misconception that if you’re in favor of things being locked down, you’re having a blast being cooped up inside and don’t see any downsides whatsoever. That is the opposite of true. I am hitting a yellow wallpaper point. I’m worried about the longterm ramifications of the way the world is right now for all three of my kids, regarding not just their educations but also their psychological stability and the economy they’ll be inheriting. 

But I also don’t want people to die. I’m generally in favor of that not happening. People die every day, of course, but if we can reduce the number of people dying, I’d like to do that.

And then like… I talk about returning to normal and, okay. I’ve seen the post, too, about how our previous “normal” is what has this country being the laughingstock of the world with how we’re handling this. I don’t want that. When I talk about returning to normal, I mean I want my son to be able to see his friends at school and be taught by someone who’s trained to teach kindergarten rather than by me saying “what the hell is a digraph” during a Zoom call. I want to go to well visits at the doctor to catch problems before they’re major. I want to be able to say, “hey, let’s go visit so-and-so” or “hey, let’s go to the playground” or “hey, let’s go get ice cream” and then do that thing.

But I also want the things that would provide a safety net in situations like this–things like universal healthcare, universal basic income, significantly higher pay for teachers, a living wage for everyone, general compassion and caring for our fellow human beings across the board. I want that change. But I also want the normal of being able to pick up my kids from the school bus after they’ve spent a day with their friends.

I hope that makes sense. 

I’m not going to debate anyone about it if you disagree. 

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But I do wish we could find a nice balance between “endless lockdown because we don’t know what we’re doing” and “we’re just going back to business as usual and screw people if they get sick.” 

Sigh.

Week One of ABA

As it turns out, ABA is considered an essential service by our state, so whether it’s wise or not (I’m leaning towards “eh?” because it’s a single person and we make her wash her hands before she interacts with anyone), we’ve started Isaac’s ABA. This is also, at least in part, because nobody knows when things are going to get back to anything resembling “normal,” and I don’t want him to miss out on any therapy he needs or be super duper behind in the coming years. Autism therapy services are notoriously hard to schedule and nail down (like forget finding someone who’d do Floortime or RDI, they’re basically booked years in advance, and I guarantee they are not covered by our insurance), so it feels like waiting at all is walking a very fine line between logical and bad idea land.

I’ve written before, too, how the idea of ABA made me nervous, and it still does because we’re not technically in the therapeutic part of it yet. The first week, as our BCBA (who is basically the services coordinator) explained to us, is all about getting Isaac used to his therapist (currently Yesica, later Kathleen) and attached enough to her that he’ll actually be interested in the therapy and not spend the entire time burying his head on my lap like he did on Thursday. Things will 100% change when we get to the actual therapy part of therapy, but for now, I’m feeling encouraged.

On day one, Yesica and our BCBA Jessica (it was confusing) brought in a big locked trunk of brand new toys that they’d scrambled to get (because literally nothing is open right now, and the places that are open are mostly just stocking essentials). The toys included a lot of typical toddler toys like stacking cups and boxes with shaped holes and crayons and a noisy firetruck. The idea with these toys is that they live at our house and only come out when Isaac’s therapist is here; that keeps them fresh and interesting and special, so that Isaac isn’t just using them all the time and not associating them with therapy.

Our therapist is here from 9 a.m. until 11 a.m., five days a week, which may be a little much for Isaac (though the doctor who diagnosed him suggested at least 10-15 hours, probably more), as he basically hits his limit around 10:30 and spends the rest of the session on my lap, staring off into space. Which, yeah, fair. I’ll admit that if I had someone pulling me into interactive play all the stinkin time, 90 minutes would be about my limit as well, and I’d probably be like “OH I NEED TO GO PEE, BE RIGHT BACK” and then hide in the bathroom on my phone until two minutes before they were scheduled to leave, at which point I’d wash my hands, come out, and be like “OH MAN SORRY ABOUT THAT, YOU KNOW HOW IT IS.”

(this would only work once, but I’d do it anyway)

And basically, for the last week, it’s just been playtime for those two hours. Yesica encourages Isaac to play with different toys and tries to get him to talk while they’re playing. She’ll help him to sign for “open” or encourage him to say “help,” and whether it’s because he’s just reached an age where that works for him or whether it’s because of the therapy, it’s working. He does regularly sign for “open” and he does regularly say “help,” and it’s really nice to see. He’s also been trying out more and more words lately, which we celebrate loudly every time there’s a new word in his vocabulary. Cake, tada, buzz, wow, light, things like that. I feel like a switch got flipped in his mind, where he’s like “oh, I can make words too! Cool!”

The best part of ABA so far, though, and the part that’s given me the most peace about the process is how Isaac’s therapist has incorporated his stimming into his therapy. Instead of trying to discourage it or stop it from happening, she’s been encouraging it and using it to teach him things. She’ll pick him up and say, “ready, set, go!” and then help him spin around, and it’s worked to teach him to respond to “ready…” by saying “set, go!” Earlier today, he was sitting on our rocking ottoman and rocking himself, as he does, so she worked with it. She rocked the ottoman for him, and then stopped, while teaching him the words “stop” and “go.” 

This mostly gives me peace because I didn’t want any part of this to mask or erase Isaac’s autism. It’s who he is. He will never not be autistic, and that’s wonderful. I don’t want to ever teach him that’s something he needs to hide or pretend he isn’t. He is who he is. And so far, even though it’s only been a week, they seem to be embracing that. I’ve got fingers and toes crossed that they’ll keep it up as we progress through therapy, into the coming year and into his eventual transition to preschool next spring (please, please, pleeeeeeease let this pandemic have calmed down some by then). 

I’ll keep talking about this, because when we started to go into ABA, I felt like there weren’t any “middle of the road” perspectives out there, where the parent talking about ABA wasn’t wanting their child’s autism to be cured but also was seeing the necessity of some therapy to help their kid cope with a very noisy world that needs words. And so far, that seems to be the mindset of our therapists as well.