Something I never thought I’d say…

Little known fact about me: I was homeschooled for a year.

If I’m remembering correctly, the reasoning went something like this. My grades had been slipping for two years at that point, due to what I now recognize as my first ever bout with depression (because no, eleven-year-old me, wishing that you’d get hit by a car is not normal). I remember a lot of talk about me not knowing how to study, which is fair enough I suppose, and a lot of blame being cast at the decision of the school district to put me in a fourth grade class that was, charitably speaking, a disaster. 

(the same fourth grade class in which a boy gave me an index card with pee on it, in which I was so bored by the material that I took to drawing on my desk for hours at a time, in which I was a permanent member of the “100+ club” because I’d learned two years before that 0x0=0)

(if I’m casting blame for my depression, it falls at the feet of puberty hormones, a pair of abysmal school years in a row, and plenty of bullying)

So I was homeschooled for eighth grade. My sister was homeschooled the same year, because the district was thoroughly messing up the accommodations for her learning disability (at one point, someone caught her closing herself in her locker during a break in classes because she didn’t want to do her assignment). My brother was homeschooled the same year because it wouldn’t be fair to leave him out. 

It was a weird year. I know that, at the start, I was… reluctant, to put it gently, and by “reluctant,” I mean that I remember having some screaming afternoons for no reason beyond that things were weird; but I eventually got the hang of learning at home, especially after we got into a routine that largely consisted of schoolwork ending by 12:30 every day and plenty of free time afterwards.

My parents used mostly religious curricula; I don’t think it was all A Beka, which was the In Thing at the time, but I feel like I used A Beka for math. My science book talked a lot about how evolution wasn’t a real thing and came with some supplementary materials on that subject, including a book I loved called “Dinosaurs by Design,” which had lots of informational pages on dinosaurs sandwiched between illustrations of, for example, Adam and Eve hanging out with a parasaurolophus. 

(I had to look up how to spell that, don’t judge me, when I was in my dinosaur phase, everything got its name from The Land Before Time)

The history text wasn’t terribly memorable. The English/language arts stuff was great, but then again, I’ve always been an E/LA person. I had to memorize a bunch of poems, and while I don’t remember how any of them went, I remember the act of memorization. For math, I did Algebra I, and I cheated so very much. Whenever my mom would leave me alone to take a test, I’d grab her answer key and input everything, which she must have known about, but it happened anyway. And then in June, as I was preparing to head back to public school (having apparently learned how to study), I had to take the Algebra I final at the high school and panicked because I’d been cheating all year and now my inability to math would be public knowledge and my parents would be furious and it was the end of the world…

…and then I got a 93?

Oh, and then every week or so, we hoofed it up to the nearest Christian school for my sister’s in-school therapy (I think? I don’t remember much because I spent the entire time reading Baby-Sitter’s Club books and longing after the smell of pizza in the other room), and most of what I remember about that was sitting in the front seat of our van singing off-key along with my Sound of Music CD.

Even 20 years later, I can’t decide if it was a good or a bad experience; honestly, I mostly settle on neutral. I don’t know if I actually learned to study or if my depression just ebbed somewhat. I was in honors and AP classes throughout high school, so something went right somewhere. And I remember, my first day back at high school, being beyond surprised when the friends I’d last seen in June two years prior not only remembered me but were incredibly happy to see me. 

(hahaha, thirteen-year-old me was such a miserable child, someone please go back in time and help her and also please de-frizz her hair)

*

Meanwhile, in the world of today, we’ve decided to homeschool Sam for the school year. 

I’m excited for it and simultaneously terrified and worried, because I don’t want to pull him out of school this year, but it honestly seems like the best option. Even in Massachusetts, where a lot of people have been doing really well social distancing and wearing masks, we’ve started seeing Covid-19 cases creep back up, which bodes incredibly ill for the school year. Had we kept up with the low numbers of the summer, I’d have been happy to send Sam back for at least a few weeks so that he could’ve had access to the school’s counselling services and learned to use the distance learning tools they’d set up for the students. 

But the numbers started to creep up.

And ultimately, Sam is… not the best at being self-guided. If we set him up on my computer or on a laptop and said “you need to do your schoolwork,” it wouldn’t take very long for him to end up on YouTube watching Markiplier play a game in which he’s a piece of bread (this is a thing, apparently). I don’t blame him for that, because he’s six. I barely know any adults who, when presented with doing work versus watching videos on YouTube, will easily choose the former. 

It’s the rock and the hard place I’ve been talking about. School isn’t safe. Distance learning won’t work for him. What are we supposed to do?

Well, it turns out that the answer is homeschooling. 

Just for a year, mind. I still think that Sam really needs that social aspect to his education, and that if Covid can get under control by next September (please please PLEASE), I want him to be back in a classroom for that reason alone. He needs kids his age. He needs socialization. He hasn’t had that in ages. 

But for now, homeschooling.

A friend of mine in the next town over posted a link to the curriculum we’re using; it’s called “Moving Beyond the Page,” and it’s largely literature-based and customizable. Sam’s a pretty smart kid overall, but he’s definitely far more advanced in math than he is in reading/writing, so we’re doing a first grade curriculum for reading and writing and a third grade (!) curriculum for math (because he can multiply and divide, and I listen to him do it and think how are you doing this, I couldn’t do that in my head until I was an adult). 

In my fantasy dream world, I’d want to grab one or two of his friends and their families and just do a small group working on the same curriculum, but that almost feels too risky and seems impossible. I wish there were a way to make sure he keeps in touch with his friends, but they’re all so young that the Messenger Kids app ends up being a “sometimes I remember to message my friends but mostly, I play games” thing. And I know that, if he’s anything like me, he’ll spend a lot of the first couple of months in screaming tears over our new normal. 

But. If he’s anything like me, he’ll adjust and come away better for it, having a good and fun (albeit very weird) year and blowing his future second grade teacher’s mind by asking them, “So when do we start square roots?” as everyone else is just getting into their times tables. 

School Shopping

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

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

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 🙂 

One Month on the Inside

The weird thing about lockdown is that not much changes from one minute to the next, even when it’s been a full month+ of hanging out at home all the time. On the plus side, I can safely say that I did not get Covid-19 when I last went to the store back in March. On the minus side, literally everything else.

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The only big thing of note is that Isaac has, despite the lockdown, started ABA therapy. ABA is apparently considered an essential service, so we have his therapists scrub down as soon as they come in the house, and since Isaac is the first kid of the day for them, there’s no huge worry that they’ve gone and gotten something and brought it to us. 

Today was day 2 of ABA, and it went… alright, I suppose. We’re still in the “let’s play so he gets used to us and then we can start therapy” stage, so it’s mostly two hours every day of unguided play with a box of toys that doesn’t leave our house but also only comes out when it’s ABA time. Carrie participates as well, which is sometimes good and sometimes bad, but both of our services coordinators pointed out that her participation is pretty important, because Isaac lives with her, so he needs to learn all of the things he’ll be learning in context of her instead of just in context of a therapist and one or two parents. 

The box of toys is all pretty easy stuff–shapes boxes, crayons, stacking toys, a firetruck. Its primary appeal is that it only comes out during ABA time, so even though the kids are playing with those toys every day, they still have some novelty to them. And it’s a plus because between Isaac “cleaning” (read: throwing every single thing he owns into the gated space between the TV and the rest of the living room) and Sam sweeping things out to the dining room/playroom with him, most of the twins’ toys are. Missing. 

Sam continues to take this entire situation harder than the rest of us. It’s a huge and difficult change for anyone, and I don’t know a single person who’s looking at the state of the world currently and getting super excited about it, but Kyle and I are at least adults with coping skills. We grumble, and we’re anxious, and when I think about the Worst Case Scenario, I have a panic attack (which is super convenient, because do you know what happens when you have a panic attack? You can’t breathe, that’s what happens, so it sends you on this delightful spiral that never ends :D), but for the most part, we have coping skills. We can conceive of restrictions lightening somewhat, and we know that if we do get sick, odds are that we’ll be fine. Hell, we’ve even got a theory that the bug that took me out for most of January and February (remember that?) was Covid-19 but nobody expected it around then, so nobody knew.

But then there’s Sam.

It’s rough on him, of course, because he’s lost school–at the very least until May 4, possibly for the rest of the year (I would be surprised if school starts up again before September). He’s lost that daily connection to his friends and teachers, his routine has been thrown to the wind, and although he’s kept his academic progress (we check in daily, he does his work, he’s doing just fine), I feel like he’s lost a lot of the non-academic stuff that kindergarten teaches you. Worse, he’s five, so he has no coping skills for just about anything. He’ll be alright for a few days, and then he’ll just completely melt down and sob and throw hours long tantrums, and when we ask him what’s wrong and how can we help, he can’t explain it. 

And we know. He’s scared. He’s lonely. He’s sad. He’s angry. He feels what we’re all feeling, but he’s only five, so he doesn’t have the same coping strategies we have as adults, and it’s heartbreaking to watch.

(but hey, at least his eventual therapy won’t be mostly talking about how he’s messed up because of his parents, so that’s a win!)

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I see people protesting because they want to go get haircuts and go to Applebee’s and go back to this arbitrary “normal” they imagine existed, but I’m here hating lockdowns because I can’t help my kid. Yes, it’s hard not being able to go to the mall on the weekend or even just visit my parents. Yeah, I’m frustrated that I’ve had to try and reschedule about 42 doctor’s appointments in the last couple of weeks. But I’m most worried about my son, and I’m most worried about people who needed those nonessential jobs to pay their rent and get groceries and now have to make $1200 stretch for who knows how long?

I’m trying really hard to be optimistic and know that things aren’t going to last forever. By hook or by crook, 2022 seems to be the date that the experts are saying “okay, if normal even existed, look for it then.” Which is A REALLY LONG TIME to be having periods of lockdown and not lockdown and lockdown and not lockdown, but okay. 

And humans have this neat superpower of being really adaptable. We’ll find ways to make school happen and we’ll find ways to continue seeing our friends and family and we’ll find ways to reopen various things (because CAPITALISM, gosh darnit!). I know eventually, humanity as a whole will adjust.

But I’m looking at the damage happening in the meantime and feeling awfully sad that some of it could’ve been avoided and some of it couldn’t, and basically, this continues to suck.

BUT. We did get a new iPad so that Sam could do schoolwork and socialize, so there’s that.

Clinging

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words-
And never stops – at all –

And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –

I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
(Emily Dickinson, “Hope is the thing with feathers (314)”)

I was initially doing okay with all of this, and ultimately, it was the thought of a longterm social distancing adventure that drove me to snap with rage that disappeared as quickly as it had come. 

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(this happened, like, a week and a half ago)

I can’t remember what set me off, but I think it was Kyle saying the words “…if Disney World is even open by then” about our trip that’s coming up in November. The idea of living life like this the entire rest of the year just made something break a little in me, and I sort of snapped at him in that way moms do when we’ve been carrying it all inside to keep the rest of the family from seeing, because it’s fine to vent to your partner when they’re available, but the emotions show up whenever anyway, and you tamp them down because you don’t want your kids to be scared or pick up on you freaking out.

But eventually, the dam breaks a little.

I snapped, and then it was gone, and I’ve been about as fine as I can be, considering the circumstances, ever since.

That sounds like I’m dismissing things, and I’m not trying to. I’m feeling the emotions everyone’s feeling: grief over the world changing overnight into something unrecognizable. Rage about politics. Fear about what’s coming next. But I feel like I’ve got a better handle on it than I did before, when I was still hovering in the “denial” stage of grief about everything. 

(and anyway, I will eat my hat if Disney isn’t open in November)

Which is all good, because we’re kind of floundering a lot with many bizarre emotions in this house.

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Anxiety is, understandably, the big one. I think I’ve got an okay handle on that because yay, antidepressants. Venlafaxine will probably be the reason I go crazy if the world ever does end properly, but for now, I’ve got a healthy supply of it, and it turns my anxiety into either really vivid crazy dreams or just really pleasant but unrelated dreams. Last night, I dreamed about characters from the soap opera One Life to Live, which I never even watched when it was a thing that was on often. The dream also took place in a therapist’s office, but that’s it. Nothing otherwise notable about it. No portentous 19 crows or anything like that.

Nobody else in this house is on antidepressants, which creates some interesting situations, most of them with Sam. He doesn’t have a completely firm grasp of what’s going on, but he knows that he can’t go to school, he knows that his school year is probably over as he knew it (they’re saying schools are closed until May 4, but I’ll be very surprised if they reopen before summer break), and he knows he misses his friends and teachers.

So, of course, he’s scared.

It mostly comes out at night, and he’s too old for the magic jar of dirt stuff I did when he was younger. Too smart, too. He doesn’t believe it when I rub lotion on his hands and tell him it will protect him from bad dreams, because his anxieties are too big to be vanquished with some love and lotion. He knows that the world isn’t the same, and will never be the same again, and it scares him. 

He gets out of bed every night after he’s been tucked in. We talk to him, we hold him on the couch, we tell him the truth, but we sprinkle it with generous doses of hope, because he needs that. Still, he’s scared. 

He’s kind of shut down about homeschooling, and I’m not sure what to do about it; worse, I’m sort of limited in what I can do about it. He’s in kindergarten, and he’s covered most of the basics he’ll need before first grade in the fall (this will have reached some sort of equilibrium by fall or I am punching this virus in the face myself), so I’m not terribly worried about him falling behind… but I still want to try and help him learn things while he’s at home. 

He does alright for about two days when we give him a new routine, but then on day three, he decides he doesn’t like this anymore and has a meltdown. Which… okay, fair. Maybe he should just have Wednesdays off or something? The routine was, briefly, some yoga and then a video about a subject he liked, writing a sentence about the subject, then doing math. And, of course, forever checking his messages on Facebook’s messenger for kids (he’s got a long distance friendship blossoming with my friend’s daughter, and it’s basically destroying me with cute). 

I feel bad. I wish that I could be 100% there for Sam, but the twins are another adventure during this, my everyday adventure that hasn’t changed in the slightest, except that Kyle is home for that adventure all the time now, so lunch and naptime are both easier.

But the twins seem to sense that something’s amiss as well. They don’t like to not be on my lap, which makes trying to help Sam with literally anything a struggle, particularly because the twins are not small anymore. They’re two now, had their birthday less than a day after the state started shutting down altogether. Our plans to take them to the aquarium were dashed.

Everyone senses that something’s up, and nobody can really parse their feelings on it. I can’t either, but I’m trying to at least throw positive shit out into the world to see whatever glimmers of hope will stick. 

That mostly happens outside. When the weather permits, we throw jackets on the kids and take them out to the front lawn to run around for a little bit after dinner (the backyard is a disaster area, and before all of this, we were going to see about hiring someone to clean it all up for us).

The twins like to run to the edges of the yard and get caught. Carrie especially likes to look at our crocuses nosing up through the dead leaves and greening grass, and Isaac likes to watch trucks rush past on their way to the farms up the street. 

Sam likes to run, just run. He runs from the porch to our big oak tree back to the porch then to the mailbox and back to the porch and to the lilac bushes and back to the porch. Being able to run with abandon helps him, I think, because our house is not a jungle gym, no matter what he thinks.

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I try to plan for Easter, such as it is. We have candy from the Easter Bunny, or at least half of what we’ll need (the other half I need to order from our local candy shop, which is taking orders but not in store shopping). The kids need nice Easter shoes, because even if we’re not DOING anything, I want them to look cute. It’s the twins’ first Easter able to do anything besides be confused about “why is this basket on my desk?” 

I mean, they’ll still be confused, just about more things than “why is this basket on my desk?”

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Nothing is normal, but it’s the new normal for at least the next month, probably longer, at least if people are smart about this. I’m still working through my feelings about everything, kind of picking at them a little bit day by day and seeing how my dreams/nightmares play them out. I think the only real waking fear I have is not about famine or a lack of toilet paper or anything like that but of getting sick myself, knowing that my lungs are kind of crap and that, at the very least, I’d likely be one of the young people ending up in the hospital and on a ventilator, away from my husband and kids for weeks on end. Without the kids, I think I could stand it, but just knowing what it would do to them…

I have a friend who’s an RN in an ICU, and even though I don’t really pray, I pray for her, to anyone or anything that might be listening. She has three kids, just like I do, two boys and a girl. She can’t even snuggle with them anymore, not until this has all passed, and it breaks my heart for her. 

Basically, I just want everyone to hurry up and stay home and behave. I saw a post earlier about this whole thing being like when you were in elementary school and some kids just wouldn’t stop acting up, so you kept losing more and more recess time, even though you weren’t doing anything wrong. Maybe it wasn’t fair, but the teacher couldn’t let the kids who were behaving outside while she stayed inside with the kids who weren’t behaving. So you watched as the bright spot in your day was gradually eaten away because people didn’t know how to act. 

Maybe it’s because I tend autistic, or maybe it’s because it’s in the nature of the oldest child to loathe getting in trouble for something not your fault more than for other kids (like we all hate it, but I think we oldest children hate it the most; I can see the loathing building in Sam’s mind every time we scold him for something the babies are doing too, and I have to remind him that he’s older and knows better), but GOD did I resent those kids. I don’t resent the dumbasses still going out and being Typhoid Marys around the world nowadays, but I do wish that someone would throw dirty diapers at their heads.

I think about them, and I think, “This stupid thing is just going to keep going, and it’s going to be 2021 before anything is over, and we’re going to just have this long, miserable time because people don’t know how to act. There goes everyone’s recess. There go people’s lives. Womp womp.”

dishonor

I let myself think that, and then I take a deep breath.

And I say, the first thing I’m doing when this is over is packing the kids up in the van and going to spend a day with my parents. 

I plan for going back to group with Isaac and Carrie and letting them play with all the plastic toys and watching them do more art and wreak more havoc, but this time, it’ll be slightly different havoc because Isaac will have his ABA therapist by then (let’s not get into that can of worms right now, I’m so tired). 

I imagine having a weekend day again where I go up to Michael’s and get whatever craft stuff I want for whatever dumb project I’ll never finish. Like maybe I’ll get photo albums or start scrapbooking or something, or at least think about it. And wandering through Barnes & Noble, enjoying the smell of ink on paper and coffee. And going to see a movie, taking all the kids to whatever crappy kids’ movie is out because we’re free to do so. 

And eventually going out to the mall, walking those long stretches of gleaming tile and popping my head into my favorite stores. Getting a free chocolate from Godiva. Setting the kids loose in the indoor playground after patiently wandering the Lego Store with Sam. Eating something that’s wretched for me from the food court and just not even caring. 

We’ll go to the beach this summer, plan it out a little more than our last trip. We’ll bring quilts and set up a full little camp on the sand, and take off a weekday to go (after all, Kyle has been working 7 days a week the past two weeks; who knows what it is about tech companies that drives them to think, “Ah, you’re working from home, that means all your hours are mine!”) so things will be less crowded and we can get a spot closer to the water.

(probably not Hampton Beach this time, though)

And we’ll have our road trip, in the fall or next fall, one or the other. We’ll pack the kids up in a rented van, we’ll see the roads, we’ll stop for gas and goodies. We’ll take 95 all the way down. We’ll stop at South of the Border, because I’ve always wanted to go but never have. We’ll see enormous fields of cotton and black eyed susans on the sides of the road. We’ll stay on the beach and then we’ll drive to Disney and we’ll be in that delightful bubble for a blissful week. 

This will happen, it will all happen eventually. This is what I think about to keep myself sane, because things are really hard and really scary right now, but it’s not forever, and in the end, we’re all in this together.

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Can I be blamed if I’m angry?
Can I be saved if I’m barely clinging to hope?
I’m clinging to hope

When I say oh, oh
Rain don’t change the sun
Jealous is the night when the morning comes
But it always comes
(Delta Rae, “Morning Comes”)

 

This Damn Week: A List

  • On Saturday, Isaac got norovirus.
    • We did not know, at the time, that it was norovirus.
    • We thought he just had a cold and had too much mucus in his system and it was just coming out all ends.
    • So we took him to the ER because he couldn’t keep fluids down.
      • He could have been there for two hours so that the Zofran would work and he’d be able to drink again.
      • By hour five, Kyle called me to ask me to bring Isaac’s usual bottle so that he would drink the fluids.
      • So my mom came to put Sam and Carrie to bed while I drove all the way to the hospital.
      • Only for Kyle to call as I was about to turn into the parking lot and say that just kidding, Isaac just drank the whole bottle.
  • Kyle and I were supposed to go on a date Sunday afternoon, but since Isaac had norovirus, that was out.
    • Instead, my dad came over and ate cake, and that was fine.
  • Monday was a holiday, and that was fine.
  • On Tuesday, Kyle worked from home. 
    • Which he does every Tuesday.
    • So when he finished work, he decided to take Sam to our local CVS to get a flu shot.
      • Despite having lost three hours of work to a random power outage halfway through the day.
      • (it was also pouring rain)
      • They were also going to buy groceries.
    • While they were gone, Isaac vomited profusely. 
      • It was impossible to clean.
    • And Sam couldn’t even get his flu shot because the power outage had caused the clinic’s supply to go bad.
  • On Wednesday, things mostly seemed normal, except I wasn’t hungry.
    • But mostly things were okay. 
    • My mother visited for an hour in the afternoon, and I had dinner with the kids.
    • After dinner, the kids started climbing on my lap.
    • I started feeling seasick.
      • Uh oh.
  • After Kyle got home, I barely made it upstairs before I, too, fell victim to the norovirus.
    • Cue six straight hours of running to the toilet every twenty minutes and not being sure which end was exploding.
      • (sorry)
    • And after that, cue the next eighteen straight hours of brutal muscle aches and a low grade fever.
    • Norovirus is a bitch.
  • BUT THAT’S NOT ALL!
    • Kyle and I share a toilet.
    • Sharing a toilet is a good way to pass norovirus from person to person.
    • About twelve hours after I first got sick, guess who also got sick?
      • (it was neither Sam nor Carrie)
  • So now we have two adults sick as can be, zero backup because we’re not inviting people into our plague shack, and three hyperactive children.
    • Child Sam is on break from school and will not stop running and scream singing “DIGGY DIGGY HOLE” all the time.
    • Child Isaac is HUNGRY but he’s also not 100% feeling better so he’s ANGRY because he doesn’t want any of his usual favorite foods and he’s very tired of Pedialyte.
    • Child Carrie is playing with Child Sam all the time at 9000 MPH and scream singing either “INTO THE UNKNOWN” or “BABY SHARK” while running around the living room.
    • My head.
  • Everyone finally seems somewhat recovered today, Saturday.
    • (this after completely losing both Thursday–when Isaac was supposed to have his ABA assessment–and Friday to illness)
  • Kyle and I feel well enough to start cleaning up after our illness.
    • We start a load of laundry.
    • When Kyle goes to switch the laundry, he discovers that the water did not drain.
    • He tries to fix the washing machine.
      • He finds $5 in change!
      • He does not fix the washing machine.
    • We cancel tonight’s D&D session so one of us can go to the laundromat.
  • At bedtime, we’re changing Isaac.
    • He has hives.
      • Wtf?
      • We have not started new foods.
      • We have not used new detergents.
      • He is not on new medicine.
    • So we call the nurse line.
      • Nurse line says that this can happen at the end of a virus and we should give him Benadryl.
      • Cool.
      • We don’t have Benadryl.
    • Everything gets pushed back an hour or so while we hunt down Benadryl and give it to him. 
  • Kyle just now got home with the laundry.
  • It is 10:30 p.m. on a Saturday.
  • I need a vacation.

Two of them

It’s coming, sooner than I want it to, mostly because I feel wholly unprepared.

It, of course, is my life as a stay-at-home mom of two two-year-olds. March 14, the twins turn two, and even though it won’t technically be all that much different from the day before, things are already starting to take a turn for the chaotic.

The biggest preview of things to come happened about two weeks ago. As part of Isaac’s therapy, we’re taking him (or trying to take him) to a parent-and-child group through our local Early Intervention center. I’d tried it before, when the twins were really young, but it hadn’t worked out because being a singular mom hauling around two babies with the exact same needs is… well, it’s rough. 

The twins were, I believe, barely past 5-6 months old at the time, not quite sitting up independently yet, and certainly not in a place yet where I could really settle them down and let them frolic. I mostly just sat on the floor, cross-legged, with the two of them lying in front of me, immobile and baffled by the suddenly crazy world around them. The other parents were chatting back and forth about how their kids were doing–this one had a GI appointment later this week, that one was finally taking a bottle without any struggle–but I could barely pay attention for more than a few seconds because the twins just. Didn’t want to be left alone on the floor. 

I couldn’t do it alone, I realized. Whether it was because of my own sensory issues making classroom settings stressful for me (too. much. talking.) or because having two infants and one parent makes doing things impossible, I couldn’t do it alone. And anyway, we didn’t really need group back then. It was mostly a playgroup for parents to come and talk about their struggles and get support, and while I’ll be the last one to suggest I don’t need support, I prefer the one-on-one kind or else support in chat windows. Face-to-face support is… stressful. 

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But then Isaac got his diagnosis, and one of the recommendations from his doctors was some sort of playgroup. Right now, he’s just old enough for the parent-and-child group, like before, and because Carrie is also in Early Intervention (at least until she stops being a little turd during evaluations and shows people what she can really do), she gets to come along, too. It’s a two hour session, once a week, and because Kyle works, I’ve asked my mom to join me on group days (which is great because half of the other adults there are grandmas as well) because otherwise, I wouldn’t be able to do it. And she’s graciously agreed to join me, and it’s all fun, we expected.

Except. The first day of group, she got a stomach bug, and she got it right as I pulled up to the center.

So I tried it alone again.

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What you first must understand about having twin two-year-olds is that unless a place is easily accessible by stroller, you’re going to have a helluva time getting in. I was recovering from bronchitis at the time (more on that in a second), and I had to haul these two children, neither of whom wanted to be carried, down a couple of flights of stairs to the classroom. I don’t blame the EI center for this, since they technically do have access around the back of the building, and they have an elevator as well (“elevator” in this instance meaning “manager’s lift from back when it was an industrial building”). I mostly blame my thought process of “well, we’ll just go in the front door because that’s less of a hike than walking around back.”

So twin two-year-olds down two flights of stairs, both of them wanting to get down but also not wanting to let go of me, and there’s no space on the stairs for any of us whatsoever. We finally got down to the classroom in time for the end of free play, and the twins had their first encounter with washing their hands in a weird place. By this age, Sam had been in daycare for about a year, so he was an old pro at washing his hands in strange places, but the twins have mostly just seen the inside of our downstairs bathroom and me coming after them with wipes. Carrie wanted nothing to do with the process and screamed and cried and refused to get her hands wet. Isaac, on the other hand, kept climbing up the step stool to play with the faucet again and again and again. 

Now here, one might ask, “well, why didn’t you pull him away?” or “why didn’t the teacher pull him away?” and I might say, “because my hands were full with Carrie, who was melting down utterly; and because the teacher had half a dozen other children plus the classroom schedule to take care of, as this is a group that has a more one-on-one dynamic.” 

Yes, Carrie was melting down, though Isaac recovered quickly from being prevented from making his dreams of flooding the room come true. He spotted a peg board like one we have at home and set to work making the tallest possible tower of pegs. Carrie, once she’d adopted a pouting acceptance of her fate, dutifully marched around the room to see what toys she could see, often coming over to sit on my lap and cry against my shoulder some more at the misery of it all. 

They both finally shuffled over to the play kitchen, which pleased me–they love watching me cook, they love watching cooking videos, and now they were getting a chance to try it out for themselves. Isaac hummed and babbled to himself as he tossed plastic ingredients into a pot (carrot, fried egg, doughnut?), and Carrie became… oddly enamored of a plastic spatula and a plastic watermelon slice. For a few minutes, they were very happy. 

I, too, was happy–happy enough to play with the Little People someone had scattered on the floor by my feet. I set up a summoning circle, and the Little People called forth the Little People Pope in his Little People Popemobile, and it was great.

And then, it was time to stop free play. 

The other kids were, I think, seasoned pros about this, or at least more of seasoned pros than either Isaac or Carrie, whose days at home have all the structure absurdist literature, which is to say little to none. Their switches between activities at home are fluid, and I don’t make them put away their toys before settling them in their high chairs or bringing them up to bed because I am tired and I don’t want screaming. At group, however, once free play is over, the free play toys need to be put away. Isaac was fine with this (hilariously, my autistic kid had the least issue with change) because he loves cleaning up, and seeing that these New Toys also had a Place basically made his life. 

But Carrie.

Dear, sweet Carrie. Carrie, who has developed an almost obsession with me lately, where even if I just step outside the room to go to the toilet, it sends her into a meltdown. Carrie did not want to give up her spatula and watermelon. 

I’m pretty sure I did it wrong. I asked nicely for the toys and, when she wouldn’t give them up, pried them from her vice like grip, which resulted in another tantrum. And I say tantrum, rather than meltdown, because there is a difference between the two. She wasn’t overtired or overstimulated, she just wanted to hold onto those two toys in particular and having to give them up made her Very Angry. It didn’t matter that it was circle time, and circle time meant songs. It only mattered that fuck you people, I want my spatula and my watermelon. 

And all the while, Isaac was running around the rest of the room. He discovered the trash can, which the teacher promised would be put away the next time we came (but for that time, it was not put away, and Isaac liked how the lid flipped around). 

I tried, I tried so hard to wrangle them both to the circle, but I could only hold onto one at a time. When they’re calm, I can do both. They rest their heads on my shoulders and conform to my body, and we’re happy. But Carrie was angry, and Isaac was excited, and their existence was chaos given form. Letting go of one to catch the other made it worse. Other children in the circle were less than happy to be there, but those other children had a parent apiece to keep them from running amok. Isaac and Carrie just had me. 

(sidenote here: I’m not mad at my mom for not being there; she got sick, and that happens. I’m just recounting how crazy it was and how it’s helped me realize that oh man, am I in over my head)

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Circle time was all about songs, with the kids who’d been there before maturely choosing a song they liked and adorably doing the hand motions. My kids, who had not been there before, either ran around the room like a crazy person (Isaac) or screamed and cried like I was tearing out their toenails one at a time (Carrie). Carrie did pay enough attention, however, to fall in love with the “fishy” song and how it ended with “bubbles… bubbles… bubbles… SPLASH!” I think it may have been the only thing she truly enjoyed about the experience.

After circle time, it was time for snacks, which prompted another ruckus from Carrie because hand washing. Isaac washed his hands once, went to the back of the line and washed his hands again, went to the back of the line and washed his hands again… while Carrie had to be forced to touch the water (she’s not like that at home at all… she’s kind of my little fish) and continued to sob hysterically when she couldn’t grab a bowl of peaches all by herself. 

It felt like I was upending this poor teacher’s entire day by having these two unruly kids. Everyone has a first day in group, I know, and all kids have bad days, but they were out of my control entirely. If I had one calmed down or under control, the other was off in the corner summoning Baphomet from the ninth circle of hell or something. 

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But at least the snack was okay. The other parents sat nicely with their kids who’d been there before, all of them using utensils in some approximation of correctness. My twins have little experience with utensils, since finger foods are just easier when you’ve got two, but Carrie gave it the old college try and ate her peaches in about three seconds flat. Isaac had no interest in peaches and instead dumped the bowl over with glee. They both selected pretzels and goldfish as part of their snack, and they would have done well, except they were next given open cups of water to practice with. 

Like. Okay. I know that I need to get them started on that. I know it’s something I should’ve been doing for a while. They’re almost two. Bottles should be ancient history.

But I remain tired and maybe I don’t want to deal with wet milky clothes every day all the time. 

Carrie gave it a try again, and she got thoroughly soaked, though she got some water in her mouth. Isaac grabbed the cup by the lip, and while I know I should have repositioned his hand and let him try again, all I could think of was how I was about to have two drowned rat children and it was 19 degrees outside.

So I took the cup away.

Undeterred, Isaac took Carrie’s cup and sat there merrily squishing every goldfish and pretzel he could find into it until the teacher finally came and took snacktime away, replacing it with craft time: black construction paper and chalk. 

Isaac ate the chalk, but it’s nontoxic, so whatever.

Carrie actually did a very good job, scribbling and stabbing and giggling all the while, which is probably why her next despair-a-thon started when it was time to give the chalk back in exchange for bubbles. 

I like bubbles time. Everyone likes bubbles time. All of the children calmed down and started laughing and chasing the bubbles. Blowing bubbles is a soothing breathing technique, and I felt some of my stress dissipate. Carrie even managed to blow a bubble of her own and squealed with pure joy when I caught it on the wand for her. 

And then it was time to move on. Free play, circle time, snack, craft, bubbles, and now gross motor play in the gym area two rooms down. The twins aren’t very good at being escorted places while holding hands because… well, a lot of reasons. With Sam, we had one child, so we took him out everywhere by himself, and we could hold his hands, and he got good at it. I took him out alone a lot. When Kat lived with us, she came with me. Taking Sam out was easy at most ages, and it still is; he’s a delight to have at any store, behaving himself quite well in exchange for a trip down the Lego aisle.

But the twins… I’ve been afraid. For good reason. I have two hands, exactly two, and any outing with two children requires more than two hands. You need at least one hand, probably two, for each child. You need hands for the stroller and hands for the diaper bag and hands for the inevitable “NO DON’T TOUCH THAT… oh, sorry, I’ll pay for it, sorry!” Being that I only have two hands, I don’t take the twins out by myself very much yet. I need to, I need to start doing it because how else will they learn? But…

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But. That’s basically the moral of this whole story. Everything is twice as hard with twins, which is why I haven’t been doing any of it, which is why they came to the parent-child group as a hot mess.

Somehow, I wrangled them down the hall and let them free. It was… something. Isaac is bad at following commands and ignored everyone who told him that slides are for sliding, not climbing, but later found a rocking horse and pure joy. Carrie just… up and slapped everyone she met. Hauled off and just, SMACK! Right in the face. I thought I saw it once or twice, turning around from helping Isaac to stop climbing up the slide, buddy, what did I say? but I only really caught it once, as I was bringing Isaac back from something else. I turned around, Carrie was facing this other little boy, and she just smacked him right across the mouth, twice, before heading off to do her own thing. 

“Carrie!” I admonished her, hurrying to find some way to scold her without dropping Isaac. The little boy seemed mostly unfazed, though he did lean against his mother sadly, and I was so embarrassed that I couldn’t bring myself to fess up and apologize. 

And then the twins got stamps on their hands and the group was over. I wrangled them back up the stairs, and right when I thought we were going to be okay, Carrie broke away from me, running past the receptionist’s desk and into a meeting room filled with heavy and dangerous office supplies. I had Isaac on one hip, the diaper bag on the other, my purse slung around my neck, and zero energy. “Carrie!” I cried again, and the receptionist looked concerned while doing nothing. 

I put Isaac down. He dissolved into sobs because I was clearly leaving him to be eaten by wolves. I put the diaper bag down. I put my purse down. I marched into the office after my little escape artist, who giggled merrily until I picked her up and then began screaming. I scooped up the diaper bag. I scooped up the purse. I scooped up the sobbing Isaac. I got us all out to the van, somehow, and got everyone buckled in, somehow, and I sat in my front seat and sobbed. 

It was just so much.

Group is a challenge for me from the start, because group means interacting with strangers, which is not something I do well. It means an unfamiliar environment. It means too much noise. It means new situations and strange schedules, and it means that I’m already parenting on hard mode just by being there. 

But add twins. 

Two little adorable kids, one of whom can’t talk at all yet, the other of whom is an impish diva gremlin child. They’re freaked out because it’s a weird place. They’re freaked out because it’s a weird schedule. They’re freaked out because there’s so much noise and so many people and everything happens so much. 

And congratulations to me, I think I just did parenting on hard mode tournament level. 

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I congratulate myself mostly because they came out in one piece, nobody got seriously hurt, and against every sense of self-preservation I have, we’re going back on Thursday (after missing last week because Isaac had a merciful 100 degree temperature, the exact cut off for “you can’t come to group today”). But man oh man do I feel like I’m shitting the bed on this parenting thing. I need to push them and teach them new things, but group made me realize just how behind I’ve been and just how ill-equipped we are for that sort of thing. Worse, it made me feel utterly incapable of doing… well, anything that involves them. How am I supposed to manage twin two-year-olds on a day-to-day basis if I can’t even keep them from wreaking total havoc in a group environment?

I remind myself that my mom will be there this time (hopefully), and that once Isaac’s ABA therapy starts, his therapist will be there. That it’s neither a race nor a competition. That they’re happy, healthy, and perfectly fine children, technically around where they’re supposed to be. 

But I also can’t help but look at it as a test where I didn’t exactly fail, but I won’t be getting a lot of praise, either. 

It also caused my bronchitis to relapse, and now I’ve got a nebulizer, so that’s fun.

I don’t know. I shouldn’t be in my feelings about this, I shouldn’t still be kicking myself about the whole situation, but I am. I feel like I’m failing them on some level that they’re nearly two and don’t have these basic things going on–the ability to transition from one activity to another without falling apart, the ability to drink out of a cup without a lid, the ability to not slap the living daylights out of other children who happen to exist. They’ve not had a lot of opportunities to practice those things, and I know that’s largely my fault, and it’s something I need to work on going forward, but I feel shitty that I haven’t… I don’t know, I guess been doing more to this point.

I don’t know. I don’t know. Two year old twins are a lot.

All about the boys…

I have a whole blog entry in my brain about the holidays, but I’m not going to write that now because there’s going to be too much to talk about as we go forward, like Thanksgiving and Sam’s Christmas program and the Christmas party at Kyle’s office and Isaac’s autism evaluation (more on that in a second), and I just want to take a deep breath before plunging into things, SO.

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We had Sam’s first ever parent-teacher conference about two weeks ago, not because of anything bad but because the teachers at his school like to make sure everyone is on the same page when it comes to kids’ progress. Sam had a half day that day, and he got to hang out at home while Kyle and I made ourselves look moderately presentable and headed to the elementary school for the conference.

It was weird, from my perspective, to be going in for it because, of course, I’ve never been on this side of things. I’ve never been a teacher, either, but usually, I’d be the student stuck at home or someone roped into doing check-ins or what-have-you while parents milled about. And, really, the only parent-teacher conferences I remember at all happened when I was in high school; and even then, I only remember the reports about two of my classes (pre-calculus, which I was failing miserably–my dad said of my teacher that he looked like was stoned out of his brains, and in retrospect, that makes me a lot more forgiving of said teacher; and art, where my art teacher got really excited because of the way I’d stored some of my work).

But it was still weird because, I suppose, I didn’t have anything to worry about. Sam’s a smart kid, and it’s kindergarten. We haven’t gotten any notes or calls from his teacher about his behavior or progress, so I knew going in that he probably didn’t have any red flags flying that would make me want to wear a cone of parenting shame. Instead, Kyle and I ambled through the empty corridors of the school, admiring the artwork on display for our benefit (including Sam’s book of writing exercises). I felt very grown-up doing so.

(shown: Sam’s self portrait and Halloween story from his writing exercise book; the Halloween story explains in the corner that rather than describing Darth Vader to the teacher, he just made Darth Vader noises)

And then we met with Sam’s teacher, who is pretty awesome. I think teachers nowadays often tend towards awesomeness, especially in higher-funded schools (we live in a tiny town with a pretty high average income, which leads to at least decent funding for the schools), but I still like to sing the praises of awesome teachers because honestly, they could get praised from morning to night and it still wouldn’t be enough. They take on our kids every day, twenty of them at a time, and somehow manage to keep them from burning the building down AND ensure that they learn something. Teachers are superhumans. 

And Sam’s teacher is a superhuman.

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And thankfully, we were all on the same page about Sam. On the plus side, she gushed about his engineering mind, talking about how he’d built a billboard of the numbers 7, 8, and 9 out of Legos (Kyle and I were highly impressed but not surprised; this is the kid who saw a picture of a camera on the side of a Lego box and built it just from looking at the picture) and how he’s excellent at any sort of kinetic learning, which… again, no surprises here. If this kid is allowed to move and build and do things with his hands while he works, he’ll be at a college reading level by the time he’s seven, I’d bet anything. 

On the flipside, he’s not an overachiever in all areas because nobody is. His teacher seemed concerned about three particular things, one of which made us giggle and another of which made us nod in agreement. 

The uninteresting bit was that Sam is struggling with rhyming. That seems like a weird thing to struggle  with, I thought, but once I worked with him on it a little bit, I started to see the issue. Sammy is, as it turns out, a sight reader now–he knows words by sight, not necessarily by phonics, and he knows that certain combinations of letters make certain sounds but not necessarily how to replicate those sounds. He rhymes pretty well when he’s not looking at words written on a page–he comes up with rhymes to really weird words that I wouldn’t even think of–but when words are written down, he has a hard time because he’s trying to see which words look alike without thinking about which words sound alike. 

So he’s in an RTI (response to intervention? I think?) group, which is basically remedial rhyming, and son, that is nothing to be ashamed of. I’m here, your 36-year-old mother, having needed a year’s worth of remedial gym. Like who in the world needs remedial gym

(actually, now that I’m thinking back on it, it was probably more than a year of remedial gym, since I remember doing it in second grade, too)

giphy-1(shown: why I had to do remedial gym)

On the giggly side of things, Sam apparently makes sound effects whenever he does anything. I think we’ve managed to tune this out at home, but it’s to a point where he’ll make spaceship noises as he’s bringing a marker over to color something or be like, “Here comes the T! T-t-t-t-t-t-t…”which… yeah, when his teacher gave us that example, Kyle and I basically fell out of our seats laughing because oh my god. That is the most hilarious and adorable thing  ever, ever. I am storing this up in my brain archive and on this blog so that it can become a story that we tell about him when he’s much older, as our parents tell stories about us (like the time I asked my dad to kill a piece of dust that looked like a spider or the time Kyle tearfully spewed the Where’s Waldo beefaroni he’d long begged for all over the house). It’s a treasure. I love it.

And on the “we knew that” side of things, Sam’s teacher let us know that he struggles with what she calls “flexible thinking,” which means that he’s very, very stubborn. And… yeah. He really, really is. This kid hates change, and has hated change since he was big enough to know that things were different from how they’d previously been. We always brace ourselves at the beginning and end of school years because change always prompts restless nights and stress in him, often ending in tears. We talk him through it, we give him social stories to help him cope, we help him with countdowns, but in the end, he always ends up struggling. 

It’s one thing I don’t know how to help him with. I’m stubborn myself (cue Kyle looking over my shoulder as I write this saying, “YA THINK?”) and it’s not something I’ve either managed to stomp out in myself… nor really tried to stomp out, because when applied correctly, stubbornness is a really powerful thing. Digging your heels in, saying, “no, you move,” all that… it’s good stuff. But you need to find a balance and recognize that some change is good, that sometimes, different is positive. 

BUT that’s also something that you can tell and model for kids until you’re blue in the face and they’ll still not get it because that’s what being stubborn is. This way of thinking and behaving is safe, so I’ll stick with it, because I don’t know what will happen if I don’t. 

Yeah, I get it, son. And I’ll always be here to tell you that it’ll be okay if you try something new or do something different. It’s hard right now; you’ve had a wild past two years (which is nearly half your life so far) that’s been full of changes, and every one seems scarier than the last. And soon enough, you’ll have the life experience to realize that change isn’t always bad and that you’ll almost always be okay on the other end… and those times when you’re not okay, you’ve got people who love you supporting you and taking care of you. 

But for now, your dad and your teachers and I will all be very, very patient with you as you learn flexible thinking. 

And then on Isaac’s side of things, we’ve got an appointment for his autism evaluation!

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This is a pretty exciting thing–waiting lists for autism evaluation can be upwards of a year and a half long, but because we worked with Early Intervention and they administered a series of tests beforehand to narrow down his issues, they were able to get in touch with the local medical group that does screenings, and that group contacted us almost immediately to set up an appointment. What’s more, the appointment is before the end of the year–December 23, to be exact. 

I’m really relieved about it on so many levels, and at the same time terrified, more of what comes after diagnosis than of the diagnosis itself. I want him to get a diagnosis because that means that we can target his therapy so that he’ll be able to understand us and express himself, and hopefully also be able to cope with a very crazy, very noisy world around him. I’m not looking to tone down any symptoms he’s expressing–rocking, spinning, stimming in other ways–because I literally don’t care about that at all. It’s what you need to deal with life in the noisy 21st century. What I care about is making sure that he’s not getting frustrated because he doesn’t understand and can’t be understood. I’ve been there. It sucks. 

But that’s what scares me about therapy. I’ve heard a lot of horror stories about various autism therapies, and don’t get me started on my absolute loathing for Autism Speaks. Isaac’s services coordinator didn’t help with that when she was leaving the other day after helping me make a new services plan for Carrie (who, the little imp, was demonstrating all of the skills she refused to demonstrate during her most recent evaluation, sigh). She mentioned that Isaac would be screeching a lot once he started autism therapy, and while I get that on a lot of levels (because it’s hard to go from “mommy just get me what I want, you know what I want, even if I’m not saying it” to “oh, I have to use words”), I’m still afraid. 

I don’t want anything that’s going to try and “cure” him or try and suppress things about him. He is who he is, and he’s perfect. And I don’t want to suppress his symptoms or hide who he is, either. I just want him to be able to communicate. 

Sigh. I know I’ll be able to talk about this with his therapists, but it still just nags at me. And I should probably find a therapist myself to help me work through everything about… well, everything.

After the holidays. I’ll look into getting a new therapist after the holidays. Right now, I’m just going to swan dive into the crazy and paddle like hell until I get to the other side. Until next time…

swandive

It’s the Holiday Season…

I love the holidays, though my definition of “the holidays” differs from most people’s in that I firmly believe “the holidays” begin with Halloween and end with New Year’s because those are the temporal boundaries of my other busy season (the primary busy season lasting from March through July). During what I’ll call a twelve week span (because let’s be real–October first is the very latest we all start celebrating Halloween), I’m constantly baking and getting the kids ready for things and wrapping presents and baking and traveling and baking and did I mention baking?

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(for the record: I love all the baking I do, but it’s a lot between October 1 and January 1)

As of this writing, my holiday season has been in full swing for about a month, with the first holiday happening last week. Halloween was unseasonably warm this year, and that turned it into an adventure for everyone. I baked the cupcakes I’d signed up to bake for Sam’s class party…

…and they were apparently a big hit! And honestly, they were great fun to do, at least partly because Kyle helped with the decorating. We spent two evenings together in the kitchen baking and mixing and mixing and decorating, and per his report, the whole experience was highly satisfying (his favorite part was rolling the cupcakes in sprinkles after they’d been frosted, and I can’t blame him). 

Our Halloween plans had otherwise been to attend the school’s trunk or treat (since our neighborhood is garbage for trick-or-treating–no sidewalks and halfway up a really steep hill that people like to drive down at about 300 MPH) and show off the kids’ costumes. For Isaac, we ended up getting an embarrassingly cheap dragon costume (and I say “embarrassingly” because it was horrible quality and way larger than the site suggested it would be, leading to a very difficult time when he eventually did wear it), and Carrie got a very floofy version of Rapunzel’s dress along with a gorgeous braid headband. Sam was, of course, Darth Vader. 

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But anyway, we wanted to go to the trunk or treat, but that first got rescheduled because of mosquitoes (Massachusetts was having a pretty bad EEE outbreak this year, but we had a hard frost a couple of days ago so TAKE THAT YOU BLOOD SUCKING MONSTROSITIES) and then it got cancelled because of rain. This left us without any sort of trick-or-treating for the kids (because our hill is dangerous in good weather, never mind when it’s pouring out) until my mom gamely agreed to come with me and take the kids to a local mall for trick-or-treating there.

This was something of a mistake.

Our local malls vary from “pretty nice, actually” to “why is this still open?” and this mall tends towards the latter category. Thirty years ago, it was a really nice place with fancy restaurants and a really posh feel to it, a classier version of the typical 80s mall. As is the case with most malls, however, time and changing trends in retail chipped away at its poshness and left it somewhat of a shell. It’s still got a singular anchor store (there’s a Sears, which gives me questions, and the other anchor spot is now taken by a doctor’s office) and the skeleton of a food court, along with a handful of mall fixtures (American Eagle, Victoria’s Secret, Journeys, etc.), but it’s definitely a shadow of its former self. 

A disheartening number of storefronts were vacant when we got there on Halloween, and the fronts that were open ran out of candy pretty quickly–I don’t think anyone at the mall anticipated the entire county coming to trick-or-treat there rather than face the rain. Sam had a grand time because he’s five and got lots of candy (a full set of Dum Dums! I’ve never seen one of those before!), but the twins were wailing by about 10 minutes in, and my mom and I were both exhausted at the end of the adventure.

So. Here’s hoping that next Halloween has pleasant temperatures and no rain.

(but at least the kids looked cute! For all 5 minutes they all stayed in their costumes)

And now it’s today, which is my birthday.

Did I do anything to celebrate? Well, I wanted to, but the kids shared a wonderful cold with me, so I spent most of last night with a throat too sore to allow talking and most of today wishing I could be horizontal. Kyle, being the star that he is, stepped in and made the batch of brownies I’d planned to make for myself and, since he was working from home today anyway, let me get a nap in while the twins were napping, which will hopefully help me recover from this cold quicker and without any trips to urgent care because of breathing (because the last thing I either need or want is to get pneumonia again). 

So things have been lowkey, but I need that. We’ve been juggling a lot of adventures lately with the twins especially, namely that Isaac has been fast tracked on the path towards an autism diagnosis and Carrie still qualifies for early intervention services.

Carrie first: she had her annual evaluation today to see if her development has caught up to where it should be, and the hilarious thing is that she’s basically where she ought to be when she’s not being observed. When she is being observed, as we discovered today, she’s pretty behind in a couple of areas, namely fine motor and receptive communication. 

But she’s not actually behind.

Most of the areas where she scored “behind” were items on the test that she knows how to do and does often, but today, when asked to do them in front of the EI evaluation team, she gave an impish little smirk…

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…and ran off giggling to hide behind the couch. Cue my little genius communicator getting much lower scores in fine motor skills and receptive communication than I know she’s capable of. On some level, this should bother me, but I’d rather she get services and not need them than need them and not get them. Worse comes to worse, they reevaluate in six months and she doesn’t get services anymore after that, or else she just gets a little supplemental help and EI helps with her preschool placement in 2021 (wow, that’s an actual year, that’s bizarre).

And then there’s Isaac.

A couple of months ago, I mentioned my concerns about him relating to autism… well, less concerns, more “I’m autistic myself, my entire family is autistic, I know what it looks like, and he looks like he’s going in that direction.” Our wonderful services coordinator got the ball rolling for diagnosis, but because he was only 17 months old at the time, we couldn’t do a lot because most diagnostics won’t say much until a kid is at least 18 months old (which I hate because if you’re living in a bright, loud world and can’t filter out sounds and sights, important to unimportant, and get so exhausted because of it and have a hard time having conversations or learning language because you’re so overwhelmed… like, wouldn’t you want to name that and learn coping skills ASAP?). 

But we started anyway. We took the ASQ and the M-CHAT, both of which mostly look at autistic traits–that is, traits that are common in people with autism. Things like lack of eye contact, stimming, repetitive behavior, the typical “that child has autism” traits, you know. Those both kind of bugged me because they felt like they were reducing autism to a checklist of traits, which I haaaaaaaate

BUT then came the RITA-T, which we did last week. The RITA-T actually looks more closely at behavior that makes sense when you understand how autistic brains function (i.e., it’s hard to split your focus because so much sensory input is competing for your attention, and you can’t automatically filter it like a neurotypical person would). The test focuses on something called “joint attention,” trying to split your attention between a toy you’re playing with alongside another person and the person sharing the toy with you. It also focuses on how you’re interpreting sensory input (e.g., how Isaac reacted to me pretending to cry, how he reacted when I called his name with a blank expression, etc.). 

And, well. Isaac scored high enough to qualify for fast tracking towards diagnosis at our local hospital. 

Fast tracking essentially means that instead of us having to play telephone games trying to get in touch with someone, the EI specialists send in the paperwork for us. Fast tracking means that instead of facing a 6-18 month wait for an appointment, we’re looking at a 6 week wait. And that’s a huge difference. Six months would put us at Isaac being two years old, skipping over a lot of development. And eighteen months would put us at Isaac being three years old and aging out of EI services altogether. That it’s been fast tracked means that if he gets a diagnosis (which seems very likely at this point), he’ll be able to receive the services and therapy he needs to help him cope with a very overstimulating world and hopefully start preschool already better prepared than he would otherwise be. 

So. We’ll see what happens there. In the meantime, I’ve got 16 days until we do something absolutely insane and pack up the whole family in a rental car to drive down to Texas for Thanksgiving! Until next time and a wild trip report…

(oh also I have purple hair now)