Month: July 2020

School Shopping

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The Fourth of July is behind us, we’re not quite to the point where people find it acceptable to go all out on Halloween (at least some people, I’m more of the mindset that spookiness should be a year-round thing), which means that it’s time to think about going back-to-school.

Our town has come up with some plans, though they haven’t shared the full details with all of us yet because their plans aren’t completely finalized, and they’re going to be getting them approved by the state first. What they did, since we are a small town of less than 10,000 people, was hold a series of town hall meetings with the principal of each school explaining the way things will likely look in the fall.

Because yes, by some beautiful miracle, schools aren’t starting until after Labor Day. I am so relieved. I hope that this remains the case for the rest of forever, even when there isn’t a deadly global pandemic.

But our town is small, and Covid cases here are few and far between–no clusters, just a person here, a family there, that sort of thing. Easily traced and manageable. And the Commonwealth wanted school districts to have three separate plans for back-to-school, so they came up with three separate plans, with the caveat that (a) the full in-person school just was not going to happen this year and anyone trying to insist on it can suck the big one; and (b) regardless of plans made, we’d probably be switching to remote learning again at some point during the school year.

The plan they want to implement, at least to start, is a hybrid remote-distance plan, with half the kids coming into school for two days, a half day of Zoom calls for everyone, and then the other half of the kids coming in for two days. On days they don’t come in, kids will have day long learning assignments, which I hope won’t translate to their time being monitored, because Sam finishes his stuff in less than an hour, and I genuinely cannot devote a lot of time to handholding; not because I don’t want to, but because other things are happening. 

I’m definitely leaning towards sending him in during the hybrid days, partly because I just don’t have the ability to give him the guidance he needs five days a week, and partly because I think it will be good for him, emotionally and mentally, to be around kids his age again, even if it’s only for a little while. 

I don’t like it. I don’t like any of it. I’m furious that we, as a country, shat the bed so profoundly with this pandemic (like, come on. Wear fucking masks. It’s not hard. You are all just whiny babies), because we shouldn’t have. We should have just been able to put on our big kid undies and socially distanced and worn masks for six weeks and then moved on. We should have had a government that cared about people instead of lining pockets.

But we don’t, and like I told Kyle earlier this week, should is irrelevant. You need to focus on what is.

And in that line of thought, I went school shopping for Sam today. 

It’s early to do it; last year, school supply lists weren’t available until around August 1, if not later, but because of the pandemic (I think), our district is trying to offer everyone a little more wiggle room, so they released the school shopping list last night, with another caveat that we needed to get double supplies–half to keep at home for distance days, and half to have at the school for in-person days. 

I honestly always have fun with school shopping; it makes me feel like a kid again. You know that really great feeling that only comes with smelling brand new, sharp and never-used crayons? The perfectly sharpened pencils, all in a row? The erasers, still pearly pink and perfect? I popped open Sam’s pencil case from last year today to see what of it we could salvage for school, and I got immediately overwhelmed with the scent of pencils, crayons, and erasers. For just a moment, it was like I was back in my first day of first grade.

This year, classrooms are going to look like they did when I was in school, too. I think we had some classrooms where teachers arranged the desks in something besides rows, but I also know we had more than a few teachers who were pretty old school and kept desks, even for first and second graders, in carefully distanced rows, not groups or circles or anything. 

But things will be different, too, because each classroom will only have less than 10 kids in it at a time. Things will be different because if your kid’s friends are in a different class from them this year, they won’t get to play with each other at recess–they’ll be outside, running around in little cordoned off yards, staying six feet away from each other. Things will be different because there won’t be a holiday concert or birthday parties or parties for holidays or anything that would be dangerous. 

And I wish that I didn’t feel like Sam needs that in-person interaction to really succeed at school and to be mentally healthy. 

They’ve told us that we can change our minds at any time, though, so I’m giving it something of a trial period. For the elementary school, they’re using the teachers the kids would normally have for distance learning instead of using an outside agency like they are for the upper level schools (which is just one of the six billion things the district is doing wrong, according to Random People On The Town’s Facebook Page). We’ll see.

And in the meantime, I buy supplies. I stocked up on two things of number 2 pencils, and six erasers. Fourteen sticks of glue, three pairs of blunt end scissors, two boxes of 24 crayons, two whiteboards with markers, lots of paper (colorful and plain white). Every time I go into the back-to-school aisles, I feel this enormous pang of sadness for the teachers having to deal with this mess. They deserve so much better pay and so much kinder treatment than they’ve received. I’m grateful beyond words that I live in a state where our elected officials are taking this pandemic seriously; I feel horrible for teachers in other states who are being forced to write living wills as they go back to school, a time that should be exciting and fun, so that they can help keep the cogs of the economy turning. 

I was feeling sulky today and saw that the coveted box of 96 crayons was on sale for less than $5, so I bought it, along with some drawers for all of my various craft supplies purchased in better times (I have about 3000 stickers and pens and washi tape and markers and so on). It helped for a minute, but just that minute of “wow, being six was awesome!” that quickly melted into “being six is less awesome right now.”

My therapist has gently been reminding me that this, too, shall pass, which is such trite advice, but it’s something I need. I need to know that this isn’t forever, because it’s not. People are going to continue to be dumb about it, but a vaccine will come soon enough, and if they don’t take it, that’s on them. Kyle will have a job soon (he has to), the twins will start school soon, things will go back to something resembling what we knew, though hopefully a little better for us having learned some harsh lessons along the way. 

(part of my plan for this year, back before it became 2020, was to get my first tattoo–something small and simple to see if my skin would scar horribly. If my skin didn’t scar horribly, I’d want to get something more complex later, and it would probably be a crocus)

And I ordered Sam ten more cloth masks so that he can cycle through them all as he needs them. He inexplicably wanted ones with pizza and tacos on them, and I say inexplicably because he does not eat either pizza or tacos.

We paid bills yesterday, not worrying at all whether or not we could afford it. I don’t know if I’ll be able to say that again for a long time. 

But I have 96 crayons, and Sam has school supplies. Kyle has job interviews, the twins have therapy, and this will not last forever.

Stuck

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Like nearly every parent in the country right now (shh, homeschoolers, you can gloat about not having to change anything later), I’m facing a dilemma right now: do I send my kid to school in person this fall or do I try and do at-home learning for him?

It’s a rock and a hard place.

On the one hand, this pandemic is a serious thing, and I don’t believe that schools should be opening right now. Our state is doing pretty well by the numbers for now, but I look at sites like CovidActNow (www.covidactnow.org) and I see the states around us creeping back up to ugly numbers. I see people carelessly heading down to Disney World on a vacation–it can’t be that bad if Disney is open, right??–and wonder how much they’ll adhere to quarantine practices when they come back. I see things from the Federal government that make me wonder if they aren’t actively trying to make things worse, and also that something as simple as wearing masks to protect yourself and the people around you has inexplicably become as much of a political statement as open carrying in Walmart. 

(who are you going to fight in Walmart, anyway, the deep discounts?)

I read our state teachers’ union’s ideas for reopening, and they sound theoretically okay–phased, slow, paying attention to the numbers–but none of them want to risk their lives like this, and we shouldn’t be asking them to. Some people say that oh, it doesn’t spread among kids, so it’ll be fine! Other people still think that the whole thing is a hoax to get us all implanted with 5G chips so that Bill Gates can take over the world or something (I wish they’d implant me with a 5G hotspot; I’d take my family and my Netflix and go ride this nonsense out somewhere very far away from other human beings). 

And then there’s that… look, have you met kids? Schools are absolute petri dishes, and unless you’re going to be putting them in little bubbles for the whole day, they’re going to be getting themselves sick and getting each other sick. I remember Sam’s first year of daycare, he had a cold and ear infection every three weeks. Literally, every three weeks. And it put my job in danger because he couldn’t be at daycare with a fever and ear infection every three weeks, so I had to take off to take care of Sam, but that wouldn’t matter now because I don’t work anyway, BUT ANYWAY, the point is that any given virus will go around a school like wildfire.

Like another example. I remember when I was six, the chicken pox went through my school. This was before the vaccine, back in the days of ill-advised chicken pox parties (my parents did not have one of those; I just happened to sit near a kid who was patient zero for that particular outbreak). Even without the chicken pox parties, though, you couldn’t avoid it. If the kid next to you had the chicken pox, you were going to get the chicken pox. And that was doubly true for the everyday viruses that marched through the school like a faceless army on a mission. In the winter, we’d all rotate being out of school for days to weeks with whatever yuck was going around. Stomach bugs, colds, flus, all of it.

So the idea that Covid-19 won’t spread through schools like wildfire is kind of silly to me. The idea that it’s a risk worth taking is also kind of silly to me. I don’t want to get this disease. I don’t want my two-year-olds to get this disease. I don’t want my parents to get this disease. I don’t want my kids’ teachers to get this disease. 

The obvious answer to all of this is to keep Sam home from school until there’s a vaccine (please please please let one of the three or all three work, I don’t care which one, just please give us a chance to focus on fixing our inherent issues instead of watching the world burn down around us). It’s theoretically possible. We finished out last year entirely online, with twice weekly Zoom calls, new boxes of crayons as consolation prizes, and gosh I miss the first half of last school year.

Even if I didn’t follow the school’s inevitable plan, homeschooling is easier now than ever. A lot of my friends currently homeschool (dear international friends: the school systems here in the state were wonky long before the current disaster timeline, that’s why), and they’ve got kids Sam’s age, and they’ve all been sharing helpful link upon helpful link. So it’s a thought.

But.

Here’s the hard place.

The hard place is mostly a picture of my average day. The morning, from 8:30 until 11, is all about the twins. On any given day, I’m coordinating ABA (they still come into our house because they’re considered essential, thank goodness), plus 1-2 other therapies for each twin, all of them at random times in the day that have nothing to do with any logic that I’ve found beyond “this is what time I’m free.” Afternoons are free of coordinating, but that’s when I dive into trying to get Stuff done (as in, house management stuff: bills, trips to Target, making sure we’ve got the things we need, doctors’ appointments, etc.). And all of that before 5 p.m. so we can get the kids to bed at a normal time. 

Earlier, when this was all starting, Kyle took charge of a lot of Sam’s school stuff–he didn’t stare at Sam and force him to do stuff, but he was able to coordinate Sam while being a little light on stuff at work. He was also able to help set Sam up on Zoom for those calls, and when he lost his job about two months into this nonsense, he was even more able to help–he was a lot more hands-on, helped Sam with art and science projects, etc. 

BUT. Kyle will absolutely be in a new job by September (please please please or else we’ll have more to worry about than just Sam’s schoolwork), and while I didn’t worry about the impression it made when he was stepping away from waiting for his computer to load a build when he was at a company he’d been at for six years, I do worry about it at a new company. Whoever he works for will likely be “understanding,” but it’s still not a good look to get a brand new job and then spend most of every morning away from your work. 

All of this creates the hard place. Who’s going to teach Sam? He’s not old enough that I feel comfortable leaving him to his own devices–I know that if he’s left alone with the internet, he’ll be through with schoolwork and diving into Let’s Play on YouTube, which he’s not supposed to do, but he does when left to his own devices. This isn’t kindergarten, either. He’s actually going to have subjects to study this year, beyond just learning to read and write and very basic stuff. He’s going to have things that he needs to be taught, not just things we can throw at him and say “here, color this.” 

That’s not even getting into the social side of things, the other intangibles that come with in-person learning. Sam hasn’t seen other kids his age since May. He hasn’t spent time with people outside of the family in about as long, and I know that’s affecting him. He’s more anxious, more nervous. He wakes up at night at least 2-3 times a week, sometimes with nightmares and other times just wanting to be with us. He doesn’t want to go and play by himself at all, so his playtime has mostly devolved into video games, which I hate because I’m like–dude, stop playing video games. You have six sprillion Legos, you have such cool toys all over the house, play with those so I can stop feeling like I’ve been flushing money down the toilet the last six years. Every day, he checks his Facebook kids messages, but that’s a sporadic form of connection at this age. 

There’s no good answer. I still don’t know what we’re doing. And I’m angry that it’s come to this: that the alleged “greatest country in the world” couldn’t get our act together four fucking months ago so that, come the start of the school year, we could send our kids back safely. Because it’s not safe right now, but the costs to not sending our kids back are pretty high, too, and as a parent, I’m feeling entirely lost.

Progress

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Weekday mornings at 9:00, Isaac’s ABA therapist arrives.

(we’ll call her Y here)

Isaac knows when it’s about time for her to get here, and he perches himself on the back of the big couch, the one against the picture window. When he sees Y’s car pull into the driveway, he smiles his happiest smile and watches her walk from her car to our front door, and he beams at her as she comes inside. 

She washes her hands first thing (after all, we’re still in a pandemic), and then she goes into the toys room (it’s supposed to be a dining room, but Sam’s toys have kind of taken over, and we don’t really have the best dining furniture anyway) to get the Box. The Box is essentially a lockbox full of developmentally appropriate toys: crayons, blocks, beads, puzzles, Play-Doh, etc. The Box only comes out during ABA time and gets put away when ABA time is over, so the toys mean a lot to Isaac (and to Carrie, who gets ABA therapy at the same time Isaac does). 

ABA is a lot less structured and behaviorally focused than I’d expected it to be. Isaac mostly directs what they do himself, with the only real therapeutic mandate being that he has to communicate as much as possible during play. This typically takes the form of him asking for things by saying their name and saying, “please” (e.g., “please puzzle” for today) or making a verbal choice between two things (e.g., choosing between the yellow crayon and the purple crayon… admittedly, a very difficult choice). 

For two hours, from 9:00 to 11:00, things are pretty blissful. Isaac loves Y to pieces (and she’s fantastic with him), and he loves his Box. I can’t tell you if he’s got one favorite toy in there that matters more than the rest, because he bounces between them so happily, though he makes sure that he spends a healthy amount of time with each one. He likes stacking shapes and building with blocks. He likes using crayons–both fat and thin–to make various masterpieces in a coloring book. He likes putting together the puzzles and naming each picture. He likes smushing the Play-Doh between his fingers. He likes pushing the wheeled toys–a fire engine and a singing puppy–around the living room. 

When it’s time to clean up and have lunch, he helps, because he’s a firm believer in everything having a place, and the toys’ place is in the Box. Y takes the box back to the toys room and says good-bye (Isaac always says, “Bye!” very happily, I think mostly because he knows how to say it), and then it’s time for lunch. 

*

ABA is one of those things that I find difficult to talk about with people I knew well before Isaac got his diagnosis, because in a lot of adult autistic circles, ABA is tantamount to child abuse. It’s painted as a way to erase your child’s autism, as a lot of negative reinforcement, as trying to make your kid “normal” rather than as accepting them for who they are.

And the reason I’ve found it difficult to talk about ABA is because… well, our ABA isn’t like that at all. Not even a little bit. 

I’m not saying that to invalidate anyone’s experiences, because I believe them, and I can see where ABA therapy has the space and methodology to become really nasty, really easily. And I’m also really frustrated that it’s often the only therapy approved by insurances.

I remember when Isaac first got his diagnosis, the doctor who gave him the diagnosis said that maybe he wouldn’t even need a diagnosis in a few months (of course, this was before COVID turned everything into crazy town, so who knows what she’d say today?). The way she said it sort of suggested that ABA and therapy would remove Isaac’s autism, but they haven’t done that, and that pleases me. He’s autistic. That’s as much a part of who he is as his brown eyes, his adorable giggle, his amazing hugs (seriously, this little guy gives the best hugs). 

What ABA has done for him is given him a way to communicate with the rest of the world and a way to not feel so frustrated. He’s always been a kid who desperately wants to be understood, so when he started having those lightbulb moments with ABA where he realized “oh, if I make this noise while moving my lips like this, they understand that I want milk” they came with so much joy for him. He still gets this enormous smile on his face when he says something and you understand him. He wants to be heard. 

That he’s being heard and understood has also really improved every aspect of his life. He’s not as prone to meltdowns or tantrums as he used to be, and he’s sleeping better. He’s stopped throwing the entire contents of his and Carrie’s room to the bottom of the stairs most days (most days). Even better, for my mommy heart, he and Carrie have suddenly become inseparable. Oh, they still fight like cats and dogs sometimes, but they also refuse to sleep in separate beds at night (though if they wake up at 3 a.m. and aren’t in separate beds, it gets very loud) and they tag team almost everything. Isaac is mindful of the things that Carrie likes and makes sure she has those things whenever possible (e.g., her favorite toy in the ABA Box is the bucket full of Mardi Gras beads; she likes to drape them around her neck and around her ankles to be as glamorous as possible. Isaac knows this, and so once he’s worn all the beads for a beat, he finds her wherever she is and methodically adorns her). When he is upset, Carrie is often the first to notice and make sure that everyone else knows (“ISAAC SAD! STOP IT!”). 

I don’t know how things are going to progress in the next ~year (the twins will be aging out of early intervention next spring, theoretically, depending on what COVID is doing), but so far, ABA has been nothing but wonderful for us. And I think that boils down to two (or so) things. 

The first is Isaac’s personality. He’s an extroverted autistic kid; he wants to communicate. He’s a goofball, very talkative and curious, excited about being tall someday, loves singing, and loves people in general. And I think that’s kind of what autistic therapies–especially ABA–want kids to become: those outgoing, will tell you all about This Neat Rock They Found, absolutely hilarious kids. I’m fortunate enough that I have three (hahahaaaaaa my introverted ass is like “I love you all so much but I need sixteen naps right now thx”), that Isaac was essentially just waiting to have the tools to communicate, so when he was given those tools, he flourished. 

And like… I think a lot of people don’t understand that autism is a way of experiencing the world, not a personality trait. You can’t train it away by trying to reward outgoing behavior or punish introverted behavior (nor should you because hello, let your kids have personalities?). And that lack of understanding permeates a lot of autism therapies, unfortunately, so instead of focusing on giving kids the tools they need to express their wants and needs (because I don’t think anyone would say that giving kids those tools is a bad idea–you need to be able to express that your needs aren’t being met, and what sort of shitty life is it if you can’t ever say, “I want a doughnut”?), they focus on trying to change personalities. And that just isn’t going to work. 

If that makes sense, which I have no idea if it does. 

Anyway, the point I’m trying to drive at is that Isaac’s personality already lends itself to being outgoing, friendly, and excited about interacting with the world. And I think that this sort of therapy wouldn’t be great for a kid who’s the opposite, who’d prefer to sit down and read a book or draw a picture instead of telling you about Also I Found A Stick Shaped Like A Y.

And the second, which remains the reason I sort of stay aloof from a lot of Autism MomsTM, is parental wants and expectations. I have a really good friend whose son has autism and is about two years older than the twins, and she’s been kind of a mentor/guide for me whenever I’m like “AAAAH WHAT DO I DO ABOUT THIS???” One of the things she told me that helped me the most was that ultimately, therapists work for you, and I think that’s been enormously helpful in making ABA a positive experience for us. 

At the beginning of Isaac’s therapy, we talked about what our goals were for him, and Kyle and I expressed that we just wanted him to have a way of communicating with us. We didn’t–and still don’t–want to take away his stimming or force him to communicate in a way that doesn’t work for him (e.g., if he’d really struggled with talking, we’d have been perfectly happy to work with PECS or to learn sign language or whatever he needed). Our therapists have been really respectful of that; Y, in particular, hsa been fantastic about incorporating Isaac’s stimming into his therapy (like how she taught him to say, “ready, set, go!” by preceding a moment of spinning with those words, and now they’re his favorites). 

There’s a lot to unwrap about therapeutic goals coming from parents, because I’ve no doubt that there are plenty of less than reputable agencies eager to make a quick buck or adhere to some weird guidelines who will pressure parents into setting goals that aren’t fair for their kids. Kyle and I tend to be immovable rocks when it comes to our kids’ best interests (e.g., if you can’t present a very strong, very scientifically backed, peer reviewed reason for changing our minds, we’ll be showing you the door), but when you’re overwhelmed by a diagnosis or don’t understand what autism is, it can be easy to find yourself steamrolled. 

And at the same time, there’s a lot of pressure in our society towards conformity; not necessarily towards sameness, but rather towards not getting too far outside of the mold. Even without external pressure, I feel like parents can have an internal need to “normalize” their kid as much as possible, and again, that can lead to some… mmm, wonky therapeutic goals. 

So I guess my overall takeaway with ABA so far is that (a) it’s not for everyone, and less cookie cutter therapeutic approaches should be researched and covered by insurances; and (b) parents of autistic kids need to be educated and empowered to set therapeutic goals that don’t erase their kids’ neurodivergence but instead give their kids the tools they need to lead healthy and fulfilling lives. 

*

Tangentially related, the twins have been on a Sesame Street kick lately (just the old stuff, though; I don’t know who’s who on the new episodes, and I don’t have the mental real estate to learn just yet) and have continued to prove my hypothesis that old school Sesame Street creates early readers. Between that and the Number Blocks on Netflix (highly recommend both, btw), both twins can count to at least thirteen (and, if you accept them repeating thirteen several times before shouting “TWENTY!” they can also count to twenty) and have started learning their ABCs. Carrie is particularly blowing my mind by (a) singing the whole alphabet song by heart, (b) learning the signs for all of the letters, and (c) recognizing letters and numbers by sight. 

Which isn’t half bad for a pair of 34 week technically developmentally delayed preemies 🙂