The other day, I realized I hadn’t written anything the entire month of July. 31 days, no writing, just me buckling in and holding on for the month. And it’s been a month, but it’s been a month where comparatively little has happened, so it’s not like I have a whole lot to talk about overall.
We left the month intentionally empty because I was supposed to have my spine surgery on July 1, which would’ve had me still recovering for the rest of the month and then slowly being able to sit up more and more again and eventually getting my life back, BUT that hasn’t happened. Instead, July was nothing but rain and nothing, over and over again.
I don’t mind the rain. I overheat so easily for so many reasons, and having nothing but rain all month was nice. But despite going on several dates with Kyle over the month of July and despite leaving the house with some regularity, it felt like the month just existed in a limbo of not giving a fuck. And then that ultimately cascaded into me giving too MANY fucks at the very end of the month for a variety of reasons, which is all to say that I spent a lot of last weekend crying and getting a headache from doing so.
It’s basically that whole tripping at the finish line feeling about the pandemic combined with me letting the stress of Kyle not having a job get to me. For the latter, I’m not surprised that Kyle isn’t employed yet because even in the best of times, finding a job takes a minute. And he’s had a LOT of nibbles and basically hasn’t gone a week without half a dozen interviews or technical screenings or what-have-you. But, you know, you try to keep a smiling face despite things not exactly being great and eventually, things are going to crack somewhat. And I cracked. And I’m fine. Sort of. Probably not that much.
My therapist has basically been pointing out to me that I’m treading water right now. Three special needs kids at home, very little break for them from anything. Husband out of a job. Bills coming due. A pandemic (on that point, I am so very sick of catering to people who are so afraid of science that the idea of science helping them is a completely foreign concept) that seems like it will never end. My own health being on the back burner for the foreseeable future.
Yeah, that’s a fun one. When Kyle lost his job, we lost our health insurance. We signed up for a different health insurance through the state website, but shortly after getting on that health insurance, the state called to tell us that no, actually, we had to be on basic bitch state health insurance instead, and that unless we choose the correct basic bitch program through state health insurance, we can’t get actual healthcare for the foreseeable future. No surgery to fix my back, no primary care, nothing but emergency care, but at least we’re covered for that?
Oh, and if that wasn’t enough, if Kyle ever gets an unemployment check (yeah, still haven’t received those, don’t know what’s going on there), we’ll have to report that income to the state and switch health insurances again, but at this point, we’re probably not going to get any unemployment checks until roughly January. Which nobody knows really why. In theory, it’s because Kyle’s previous PREVIOUS employer (not the one from which he got laid off in June but the one from which he got laid off LAST YEAR) needs to confirm to the unemployment department that he’s been laid off from them for a year, but I just???
Like we’re really fortunate to have family helping us through this stressful time, but if we didn’t? Are we supposed to wait for the whims of enormous corporations to ensure that we can put food on the table?
(if anyone was wondering, being on unemployment SUCKS, nobody would do this unless they had to, if you think they would, maybe go read something outside of your own echo chamber for five minutes; also if anyone was wondering, that we don’t have universal health coverage that’s not tied to employment in this country is frankly barbaric)
SO ALL OF THAT TO SAY that I put my surgery off AGAIN. It’s been bumped to at least January now because I can’t imagine trying to get through the beginning of the school year and the potential beginning of a job for Kyle while stuck flat on my back recovering. It’s definitely the best decision, but I feel angry and frustrated and stuck. I want to do so much and there’s so much that could improve my physical and mental health, but I’m so afraid of triggering that severe pain again before I’m in a place where I can have surgery to repair it, so I end up being a lump on a log, which really just makes everything worse.
Hence the treading water thing. Hence the not writing. Maybe I’ll have more to write about later. I don’t know. But right now, I just feel so drained and angry and stuck that it’s a more exhausting experience than it should be.
I’ve wanted to write this for a really long time. Most of my life, actually, now that I think about it. I’ve wanted to be upfront and honest and open about who I am for so long that it’s hard to remember a time when it wasn’t something I wanted, but life has this funny way of preventing this level of honesty. You worry about what people will think, you worry how your truth will affect other people, you question yourself on every level.
But ultimately, here I am. Being honest and open, and I hope that after you, dear reader, finish with this post, you’ll still stick around and love me (if you do love me; if you didn’t to begin with, it’s all good) as much as you did before. If you don’t, if you’ve changed your mind on me, I’ve reached a point where I’m okay with that, okay with people who can’t accept me for who I am seeing their way out of my life, because at the end of the day, I’d rather be authentically myself than keep up an act.
In that vein, rather than just beating around the bush and leaving you to read the whole post and be like “BUT WHAT ARE YOU??” like this is some vague Facebook status where I say that I’m HARD TO GET ALONG WITH and I’ll ALWAYS FIGHT FOR MY FRIENDS because I’m a SCORPIO WHO LIKES ELEPHANTS or something like that, I’ll get the big revelation out of the way first, as a sort of thesis statement. That way, if you don’t like it, you can stop reading now, unfollow me, walk away, and not worry about the rest.
But I hope you’ll stay. And I hope that you’ll read past this point, where I tell you that I am bisexual, I always have been, and I always will be.
But how do you know??
Do you remember the first time you saw someone who took your breath away and reset your brain to factory settings? And all you could do when it happened was just stand there and blink and wonder what had happened and when you were going to get back to normal?
I remember. I was fourteen years old, and I was in typing class. There was a girl in my class, whose name I absolutely forget, and one day, even though I’d seen her hundreds of times before, she left me dumbstruck. I was the teacher’s pet in typing class (thanks to Mavis Beacon and having a college boyfriend with whom I chatted on AIM all the time), but I don’t remember doing very well that day, because it was all I could do to kick my brain back into gear and stare at the passage we were supposed to be typing instead of that girl.
Now, I grew up in a pretty conservative Christian household, and as I’d neared puberty, the main thing I’d learned about sex was that doing it outside of marriage was Bad and Wrong and would probably result in me getting pregnant with AIDS. To my parents’ credit, this wasn’t their messaging, by and large. They put their collective foot down when it came to my love life overall (still let me date a guy five years my senior, mind, but their rules about physicality were strict enough that they got me grounded at least twice over kissing), but the hellfire and brimstone didn’t come from them so much as from the culture of conservative Christianity at the time.
My awakening, as it were, happened right as purity culture was finding its footing. For the uninitiated, purity culture was (maybe is, I don’t know what churches similar to the one I grew up in do with their adolescents now) this obsession with not only not having sex until you were married but not getting into emotional entanglements either. It often involved things like purity rings and girls getting compared to things like chewed up gum, tape that’s lost its stickiness, shattered glasses, etc., if we were “loose.” Nobody much talked about sex itself… it was more the idea that having sex outside of what the Bible condoned (i.e., one man and one woman in marriage, however the current culture defined it) would absolutely ruin you. You’d turn into a sex addict, you’d get pregnant with AIDS, you’d be worthless, your future spouse (assuming we’d all have future spouses) would be the Bigger Person for accepting you in your gross, already-did-the-nasty-ness.
And anything outside of heterosexuality? Don’t even think about it. Being gay was a sin, being attracted to anyone outside of a cisgender “opposite” sex spouse was a sin, and a bad one. Almost as bad as abortion.
So I had this moment of “KAPOW, beautiful girl!” but I had no idea what to do with that feeling because bisexuality just wasn’t on my radar in the slightest. Sure, we had internet, but it was the baby internet, a wild west without real search engines, and anyway, even if Google had been available, the idea of my parents finding out about me researching this perversion terrified me. I had no label for myself, and all I could think, when I was trying to sleep and fantasies about that beautiful girl and other beautiful girls danced through my mind, was that I must be addicted to sex.
(mind, I’d gone no farther than kissing my boyfriend at that age, I only just barely knew what sex entailed, but there I was, fourteen years old and an obvious sex addict)
This was, in retrospect, the wrong conclusion, but I had no way of knowing that. Shame over my apparent sex addiction consumed me, and some nights, I’d lie awake all night, begging God to help me not give into the temptation of wanting to have sex with a girl (the temptation of wanting to have sex with a guy, mind, was perfectly fine–after all, being a good Christian girl, I’d definitely be doing that eventually) and to forgive me for letting things get this bad. I was particularly terrified after one sermon brought up that Jeffrey Dahmer had Jeffrey Dahmered because he saw porn and, therefore, sex outside of acceptable parameters could naturally lead all the way to being a serial murderer and cannibal. I wasn’t there yet, but that sort of thing gets into your head when you’re autistic, and I was convinced that unless I repented for being attracted to other girls, I’d be there soon enough.
This particular theme played itself out many times over the years. I’d have these bursts of being okay with myself, somewhat, followed shortly thereafter by all night repentance fests, right on through college.
Some things did change. When I was sixteen, I found out that bisexuality existed, thanks to religion message boards and an improving internet. Further searching led me to the term “bi-curious,” which I adopted for myself–I wouldn’t ever actually have sex with a girl or date a girl or fall in love with a girl, I told myself, but I was awfully curious about it.
Warring with yourself that long, however, is exhausting. All those sleepless nights took their toll. Acceptance finally started to come to me when I spent a semester abroad, studying theology and Christian history at Oxford University (which makes me sound super smart, but y’all, I barely passed). I was there a hundred days, living with people who seemed really comfortable with who they were, more than almost anyone I’d ever met. And living with them, I had to be mask-off with my autism because it was exhausting not to be.
Not only that, but being in Oxford introduced me to more liberal forms of Christianity than I’d known my entire life, different interpretations of the Bible that looked at words in Greek and Hebrew and said, “but is that what it meant historically?” and “can we apply this literally to our lives today or do we need to sincerely consider the historical and cultural context in which it was written?” I studied Plato and Aristotle and fell absolutely in love with Plato’s Symposium and the idea of Forms. And all of that combined so that by the time I was on the plane home in April, I knew that even if it was a sin to be so, I was bisexual. It was my cross to bear, and I’d have to bear it.
And I felt guilt over it still, so much guilt, but the sleepless nights grew less and less. And then one day, when I was a few years out of college, I connected with this amazing guy from Texas, and while I still wasn’t wholly guilt-free about it, I told him early on: “I’m bisexual.”
And he said, “oh.” And loved me just as I was and just as I am, and the guilt started to go away. Eventually, after we left the church altogether (that’s another story for another time), the guilt was gone, as if a huge weight had been around my neck, and I could finally live knowing who I was–who I am–and not hating myself for it.
It did take me longer to be open about my orientation with others in my life, mostly because I didn’t know how they would react, but as I’ve been inching out of the closet, everyone has been so loving and accepting, and it’s such a good feeling.
So to answer the question: I know that I’m bisexual because I’ve tried to fight it for so long, because I spent the better part of nearly twenty years at war with who I was, and in the end, I decided to let myself win. If I weren’t bisexual, some of that warring, that repenting, that begging would’ve worked. But none of it did. And I’m so glad.
But what does it mean??
A fun thing in the LGBTQIA community is dissecting labels.
I realized, after watching the Blue’s Clues Pride parade with my kids (hurrah, hurrah, oh you want to hear it again, Isaac? 42 times in a row wasn’t enough? Alright) that nearly every sexual orientation and level of attraction has its own label. It’s very convenient on some level, but if you’re not super immersed in the community, it can also get pretty confusing.
Bisexuality is something that’s become particularly contentious to define lately, with a subset of the community saying that it’s exclusionist towards nonbinary people or trans people. This is, of course, bullshit–bisexuality has always included nonbinary and trans people, and it always will. Still, those who aren’t comfortable with the “bi” part of “bisexuality” have tended in recent years to identify more as “pansexual” or “polysexual,” rather than bisexual.
I use my own definition of bisexuality, thanks to some message boards I’ve poked around and articles I’ve read. And this might be its own microidentity, but listen, I read the word “bisexual” first in 1999. It entered my identity almost 30 years ago. I’m not giving it up, thank you.
So anyway. For me, bisexuality means that I’m attracted to and can fall in love with people of my gender and not of my gender but that gender identity does play a role in how that attraction manifests. For example, when I’m attracted to another woman, I cannot talk, I become an absolute idiot, and flirting is 100% out of the question. Good-bye, Abby’s brain, I hardly knew ye. When I’m attracted to a man, however, I’m able to turn on the charm, flirt like crazy, make wonderful jokes, and just be naturally fun.
(in theory, at least; it’s been a loooooong time since I’ve been in a position to really flirt with anyone except Kyle, and our flirting mostly consists of teasing each other through the house while trying to be a functional pair of adults, key word: trying)
I find different things attractive in men than in women, different things attractive in enbies than in trans people, and so on. Gender absolutely plays a role in my attraction to people, not in the sense that I’m not attracted to certain genders at all ever but in the sense that how I’m attracted to someone will change depending on their gender.
It’s hella confusing, of course, but that’s the bisexual life for ya.
But wouldn’t this mean you’re just a slutty mcslutface??
Which brings me to the other part of my identity: demisexual.
I fought this one for a while, too. Basically, being demisexual means that you’ve got no interest or sexual attraction towards a person until you’ve developed a deep bond with them. For me, it mostly translates to me being perfectly content to flirt with people (when the opportunity arises or arose), but having an actual intimate relationship with a person requires at least a 5th level friendship and constant reassurance that yes, we’re on the same page.
I had my slutty mcslutface days in college and right afterwards, but nowadays, eh. Kyle and I have a good relationship, and I’m honestly too tired to throw myself at anyone else, even if I did have the inclination.
But you married a man,so doesn’t that mean you’re just straight??
No more than getting married means that you never look at your celebrity of choice and think, “daaaaaaaamn.”
Look, I’m married, not dead. I’m not exactly running around and dropping trou for every warm body I come across, but that doesn’t mean I wasn’t fanning myself through the entirety of Thor: Ragnarok (Cate Blanchett, Chris Hemsworth, Tom Hiddleston, Tessa Thompson, Mark Ruffalo, Karl Urban, AND Jeff Goldblum? Um, yes please?).
I get gobsmacked by people who hit my every type, male or female or neither or both or somewhere in between. I’m not swiping around on Tinder (even if I were single, just… no.), but I didn’t stop being attracted to people just because I got married.
Bisexuality is weird in that I constantly feel random pressure to prove that hey, yeah, I’m still attracted to women and enbies and trans people, even though yes, I’m married to a man and, from the outside, you’d probably think we’re just your friendly neighborhood heterosexual married couple. But while my marriage, being absolutely wonderful, changed a LOT of things about me, it did not change my sexual orientation in the slightest.
I feel like I could probably write a TON more on the subject, going into years of that warring with myself all the way up to getting my first Pride flag this year (because it was free! which is my favorite price for things). And I probably will write a TON more about this eventually.
But for now, I really just have one real conclusion, that being the wish that I hadn’t warred with myself for so long and that I’d come out sooner. I know and I love who I am, a bisexual woman, and I hope that you do, too.
Things just seem to go in cycles, patterns repeat themselves, and then you end up looking at your situation and asking, “…wait, didn’t we JUST do this?” which is annoying because nobody wants to keep doing stuff over and over again AND YET.
Long and short, Kyle got laid off on Friday.
It sucks. There’s no other way to say it. We weren’t super comfortable lately (various unexpected expenses keep popping up and, as per usual, they end up costing roughly $500), but we were managing. I was thinking about getting a job in the fall after recovering from my spine surgery, just to give us a little more wiggle room for Things. And we were managing.
And then Kyle got laid off.
It wasn’t his performance. It wasn’t tight budgets. It wasn’t a CEO throwing their weight around. It was a managerial decision that made a lot of sense, which is even more annoying because there’s nowhere to throw any misplaced frustration except space, I guess. Space and capitalism. But more the latter than the former.
Friday was all about getting ducks in a row: Kyle signed up for unemployment and signed the two of us up for state healthcare (which, in our state, is really good). I called the hospital and rescheduled my spine surgery to make sure that our health insurance will be updated before I go in (because while any insurance we’d have would be retroactive to the first of the month–when insurance should kick in–I don’t want to wrestle with billing departments over a $40k surgery). We both sat down and cried. We both went on all the sites to see how the job market is looking in Kyle’s sector.
And on the upside, it’s a decent enough market. Lots of jobs for his title, a lot of them with remote options. Lots paying decent money. And in the meantime, we have families willing to help us out as much as we need. This will hopefully be a short season, and it’ll be a season where Kyle gets to spend a lot of time with the kids and with his family, whom we haven’t seen in two years (thanks, pandemic), and then take care of me/them after my surgery in August.
But I wish it weren’t going to be a season at all. It’s that Lord of the Rings feeling, where you wish the ring hadn’t come to you and that you weren’t living through these times. Sure, you can decide what to do with the time you’re given, but that doesn’t make it feel any better to see Gandalf fall down to the middle of Middle Earth or to have the damn ring around your neck try to turn you evil every second of every day of your life. I think both of us are happy to make the best of the 24 hours we’re given in this shitty ass season, but I’d really prefer to be in a better season.
Like maybe one where we’re financially comfortable, where the world is an objectively good place that isn’t constantly heating up, where I can feel optimistic about the future for more than 15 minutes at a time.
But instead, we just sing this verse again, and really, I’d just rather move onto the next.
Have you ever had a month where everything happened so much and you didn’t have any time to really process one thing before the next was happening because that was May in our house.
It happens roughly this way every year. From the twins’ birthday in March to the Fourth of July, I’m basically running around like a chicken with my head cut off–baking cakes, wrapping presents, organizing mini parties (because aside from the twins’ first birthday, they haven’t really been in a place to have a real party). Even in typical years, May is the heaviest chunk of this insanity, with Sam’s birthday, Mother’s Day, and Kyle and my anniversary squeezing into the mix.
But this year is not a typical year, and unlike last year, this does NOT mean that things got quicker and easier.
The first chunk of the month was sort of easy. It was mostly just organizing for Sam’s birthday, his seventh birthday, which feels like a monumental year. We’d hoped that by this time, he’d have been back in school and able to have a birthday party–a real party–but 2020’s claws aren’t fully extracted, so we had to make smaller plans, plans that involved a Minecraft cake (of which I am VERY proud), a trip to the Museum of Science, and trick birthday candles.
And admittedly, that’s a far cry better than last year. Last year, I scrambled to pull something slightly special together, and it was all taking place roughly in and around our house. This year, we could at least go somewhere and do something. We could go visit my parents, which we’d BARELY started doing last year. And that made a HUGE difference.
He’s a happy seven-year-old, missing one of his front teeth, obsessed with Pokemon and Beyblade and Minecraft and science. Bouncing around the house at 9000 miles an hour when he gets excited and then flopping down on the couch talking about how exhausted he is. Begging us to have a Beyblade battle with him literally every second of every day or, failing that, to play Pokemon with him (this currently involves him telling us what to say about our Pokemon and us saying it).
He is also, it’s turning out, not a neurotypical kid. This isn’t surprising in the least, but all of the testing that Sam has had over the last several months in preparation for him returning to public school in the fall has kind of confirmed what those of us close to him have suspected for a while. At the very least, he falls pretty solidly on the “yes” side of the ADHD scale (as in “yes this kid has ADHD”), and everyone who’s evaluated him is pretty solidly convinced that he’s autistic as well, which is giving me a lot of emotions.
On the one hand, I’m thrilled. I’m autistic. Isaac is autistic. We’re a neurodiverse family, and that’s how it’s been from the beginning. It means that on some level, Sam’s brain and my brain work the same way, and that is just SUCH a relief as a mom, knowing that your brain and your kid’s brain are on the same wavelength. It makes sort of “hacking” those wavelengths a little easier, because even though the same things that worked for you almost certainly will not work for your kid, you at least have a common starting ground, and that’s an amazing feeling. Instead of watching your kid melt down and not knowing what to do about it, you can recognize “okay, the TV is too loud, he’s hungry and tired, and his blanket needs to be washed so it’s less scratchy.” And you can even find ways to motivate schoolwork, if you’re an A+ student (which I am. Sometimes.).
But on the other hand, I’m frustrated at the narrowness of diagnostic criteria for younger kids. When Sam was much younger, everyone who met him said that he couldn’t possibly be autistic. He forced eye contact with everyone, literally took people’s faces in his hands and made them look at him. He’s always been a little comic and so talkative. In daycare and even up through kindergarten, he’s always been a social butterfly who makes so many friends. He’s beyond clever and, to my great envy, has none of the social signs that people look for when diagnosing autism… so he went completely undiagnosed despite the ways he melts down during times of transition and despite his sensory issues with food and despite how he shuts down when something seems too hard for him.
ADHD and autism look really similar sometimes.
I’m a little relieved that he didn’t get diagnosed earlier because it spared us a lot of stress with therapies that might not have benefitted him in the long run, but I’m also annoyed because now, we have to go through the whole referral process, which can take up to 18 months (I’ve filled out paperwork for a place that could theoretically offer him an appointment in July–more on that being a silly idea coming up later–but they haven’t gotten back to me since I sent it). He has an IEP now, but it’s there without the legal protections in place because he doesn’t have that diagnosis, and that frustrates me.
So it’s a whole thing. I still have more paperwork to fill out for him to get back to school in the fall, and it’s a lot. But having these pieces to the puzzle has really helped.
Sam turned 7. We set up his IEP. I went to the eye doctor for the first time in eight years (ah, American health insurance). And then, since Kyle and I are both fully vaccinated and it has been a YEAR, we hopped on a plane and flew down to Florida for our tenth wedding anniversary.
We went to Disney for our honeymoon, and I can go on a whole rant about how awful a lot of their business practices are, but I also tend to light up like Christmas at the idea of being there, and after this trip, Kyle does as well. It was just the two of us, no kids or anyone else. We went at our own pace–made lightsabers on the first morning, ate around the world at Epcot the second day (I love Epcot festivals, they are magical), drove down to Miami-ish to spend time with my bestie Sherrie on the third day.
There was no real pressure. We did what we wanted to do when we wanted to do it. No worries about someone getting too tired or not wanting to eat the food at a certain restaurant. No rushing to make this Fast Pass time or that restaurant reservation. Lots of crowds, to be sure, but without the stress we’ve gotten used to on these trips.
And it was just. Nice. Nice and earned. We’d been burning out pretty quickly, thanks in large part to my sciatica having us running on empty since November, and while this didn’t refill our tanks by any stretch of the imagination, it was VERY nice to be able to just be with each other, relaxing and having a good time. Kyle enjoyed himself so much that he actually took pictures (I’m the one with the camera most of the time) and has been talking about what we’ll do the next time we’re there, and I’m just happy. Very happy to have had that time with him.
And now we’re back and 30 days out from my spine surgery. I’d be lying if I said I wasn’t genuinely really nervous about the surgery. It’s not a complicated procedure like a fusion or fixing scoliosis; it’s just removing the herniated disc material and letting my sciatic nerve heal some, but because of my weight (let me tell you, a pandemic and a spinal injury are really not good when you’re trying to get healthier), there’s a possibility they won’t be able to reach my spine. And there’s always a possibility that it won’t work, that I’ll just leave the hospital in more pain than I had when I went in, and that scares me.
The recovery period scares me, too. Basically from July 1 through October 1, I won’t be on my A-game, which is annoying because so much is happening in that timeframe that I need to be present for: Sam starting school again, the twins starting school in the fall, Halloween prep, picture day… it’s all stuff that I love doing about parenting, and it’s all stuff I’m either going to have to be very lazy about or else entrust to somebody else, which I HATE doing because delegating is scary because what if it’s not exactly the way I would’ve done it but HNNNGH.
I need this. I desperately need this surgery and the recovery time, but I am stressing so much about getting through the recovery. Kyle suggested (per his therapist) that I focus on something after the surgery that we’ve got planned (which is nothing right now because I’m not sure if any of our usual fall activities are even happening this year–I think they are, but who knows?), and I agree with that, but it’s so hard to make my brain see past the recovery all the way to what comes after when so much comes in between.
I started writing this a couple of weeks ago because I was feeling ranty, and I don’t even remember what I wanted to rant about (C-sections and autism, I think? Tl;dr – my C-section was amazing and I would do it again, Autism $peaks sucks, and autistic people like myself and my kiddos need acceptance, not just awareness, the end). And now, I’m looking at it like (a) I’m not in a ranty mood anymore, so I’m not going to rant; (b) my blog is WAY too depressing, WAY too often; and (c) what if I want to talk about good stuff?
So you’re not getting a rant today. Sorry!
Instead, you’re getting me cheerfully updating you on my life, why I’m feeling optimistic, and what’s up next!
BIG OPTIMISTIC POINT #1: SHOTS!
My name is Abby, and I am FULLY VACCINATED AGAINST COVID-19!
Obviously, all sorts of crazy things could still happen. The world is still in some measure of chaos, and who knows what variants might come from Brazil or New York or something. I sincerely doubt anything will mutate so much that we’ll be back where we were in 2020, but anything is possible.
BUT for now, I am 90-someodd percent protected from getting infected. And oh, my god, it feels so GOOD. And even better, almost my entire family that can be vaccinated is very close to the same boat! My dad got fully vaccinated around the time I did (I qualified earlyish because of my asthma and obesity, he qualified earlyish because of his old) (ha ha), and my mom and Kyle both have one shot under their belts. My sister is up next once I find her an appointment next week (I’m the family’s designated “vaccine finder”), and I keep hearing from people I love that they’ve finished their second shot, that they’re fully vaccinated.
And I know that *technically* we’re not supposed to jump right into everyone hanging out again, but GOSH, I just really want to go and give my aunties and uncles and cousins very tight hugs because I haven’t seen them in forever. And I can’t wait to see people in person after canceling playdates and get togethers all last year. Two of my cousins had babies in the last year and I haven’t even showered them with gifts like they’ve done for my babies yet! And we’re all so close to being vaccinated, and I’m just like AUGH please please PLEASE let us be able to get together for the Fourth of July, that would be amazing.
(granted, I will probably be on copious amounts of painkillers–more on that later–but I wouldn’t miss it for the world)
My favorite, favorite, FAVORITE shots moment came really early on when my friend who’s an ICU nurse got her shots. She’s been really heavily on the frontline this entire time and has been so strong and brave (which, I remind everyone reading this, doesn’t mean she hasn’t been afraid or had moments of weakness, but that she accepted those facts and continued to be the amazing, compassionate nurse she is anyway), and knowing that she isn’t going to get Covid was just like…
(I don’t even have words for it, so just picture me squealing with delight and bouncing)
The pandemic is far from over. There’s still a non-zero chance that my kids will get sick, and that makes me very nervous, BUT the risk is decreasing pretty steadily. Shoot, look at death count graphs lately, and you see a very sharp drop-off starting about two weeks ago, at least in states where the most at-risk got vaccinated first. These vaccines work. When I got my second shot, I teared up a little bit, not because it hurt, but because it feels like a genuine real time miracle: the world got together to fight back against a collective horror and we’re going to win. It is amazing what human beings can do when we stand united.
And related to me getting my shots…
BIG OPTIMISTIC POINT #2: PLANS!
I have plans.
Maybe it’s just how my autistic brain functions, I don’t know, but I am at my absolute best mood-wise when I have plans. I love looking at the future and being like “oh awesome, something to look forward to.” And honestly, the pandemic rained on that particular sort of parade a lot, because you just couldn’t plan for anything. Inevitably, things would close or get cancelled, and you’d be stuck at home, thinking too much about Tiger King or something (seriously, how was Tiger King a whole-ass year ago?).
But I’m vaccinated, Kyle will be fully vaccinated as of May 6, and we’ve got plans.
Plan number one is our anniversary. We’ve been married for ten years as of May 22, and I was feeling mildly sulky about it not being as big of a deal as it could have been because of Covid, but then vaccines actually worked and I was like, no, you know what? This is a big deal. We’ve been through a lot together, some really difficult years, but what we haven’t been is on a real actual date without the kids in more than a year.
So we’re going on a BIg Date, by which I mean we’re flying to Florida for a weekend.
It’s a risk, but it’s a calculated one. We’ve been reading every article that’s come out about Covid, variants, and vaccines for ages. We’re not data scientists, but we’re human, and while we’re not crazy about the idea of being in a plane with recycled air for three hours, we’re also vaccinated. So we booked a first class flight (anniversary trip, plus it ensured we wouldn’t have to sit next to anyone who didn’t share a house with us, AND it meant that we could be in the absolute front row with nobody’s air coming back at us), we rented a car, we made the plans. Of course, we’re hitting Disney. Of course, we’re getting our toes wet on a beach. Of course, we’re still going to the Melting Pot.
And I feel beyond excited and also a little stunned, like is this really a thing that’s happening? I half expect everything to get cancelled again, and it may very well do just that.
But oh, to TRAVEL again. The thrill of going places, of using tickets, of the smell of stale coffee and exhaust, of announcements over a PA and the knowledge that something exciting is happening, I’m just over the moon about even being in an AIRPORT again.
And then we get back, and life is going to continue! I’m getting new glasses! I’m prepping Sam to go back to school in the fall!
I’m having surgery!
BIG OPTIMISTIC POINT #3: BACKS!
Remember back at Thanksgiving, when I had such agonizing sciatica pain that I went to the ER and they were like ‘mm, that’s nice’ and gave me a nerve blocker and a lot of painkillers and promised they’d follow up but very little came of that because everything is 6000 times slower because of Covid so I’ve been gradually feeling more pain ever since and panicking about the idea of it getting WAY worse and me basically having to shit in diapers all the time?
(my brain is a fun place)
So despite Covid delays, I did get to see an orthopedist in January, and he recommended that I go get an MRI. The MRI was its own fun thing because they were already booking a month out, but then Kyle’s company switched insurances at the beginning of March (and my appointment was initially on March 5, I think?), so they had to cancel the appointment, get approval from my new insurance, and rebook the appointment.
The new insurance said they wouldn’t cover the MRI because I hadn’t met my deductible yet, so the office just. Didn’t rebook it. And blah blah blah, I basically had to call them and say I’d pay out of pocket for it, which, long story short, is part of where our Biden bucks went (more on those later). So my MRI, which was supposed to be at the very beginning of March ended up happening at the very end of March. And it was a fine experience. I got there before sunrise, lay perfectly still in a loud machine while looking at pictures of a calm beach, and then was told I’d have my results soon.
So here’s my back:
At the very bottom on the left, you can see the root (haha) of all my problems: a herniated/ruptured disc that’s compressing my S1 nerve root between itself and my magnificent bone spurs. On the right, you can sort of see the way the erupted disc material is covering up the nerve in question, which is why I can’t feel any of my inner thigh and otherwise feel like cold lightning is shooting down my left leg. It’s really fun.
The first doctor I saw wasn’t too big on the idea of surgery; he wanted to start with conservative approaches, like epidural injections to just turn off the whole nerve for a while, which would’ve been great back in October when the problem started. But now, it’s the middle of April, nothing has gotten better, and I just want to get my life back. And I know that surgery doesn’t guarantee me getting my life back, but I feel like it’s doing more than just putting a booboo bandaid on it and wishing me good luck.
So the second doctor I saw agreed, but said that the surgery might be somewhat complicated by my size (because I am, in fact, fat), since their retractors are only so big, so if they can’t reach my spine during the surgery, they can’t do it. BUT in either case, they scheduled me for surgery on July 1 (and I’m like HNNNNNGH SUFFERING FOR TWO AND A HALF MORE MONTHS THIS WILL BE FUN), so we’ll see what happens. I’ve been judicious about my diet since that point (save for Easter week, when I just ate brownies and chocolate bunnies as quickly as possible so they’d go away), and I’m hoping to find a way to walk every day (which is harder than it sounds, since we live on a very steep hill, like it feels like a 45 degree grade, and that is B A D for herniated disc spinal issues).
But either way, we’re actually doing something, and I know where the problem is now. Once the surgery is over, I can reenter physical therapy and focus specifically on healing that area instead of just doing general stuff and hoping it works (which I think actually made things worse before). And with any luck (read: hard work on my part), I can finally put my back behind me.
BIG OPTIMISTIC POINT #4: MISCELLANEOUS!
And a list of other miscellaneous things that have me happy right now:
We bought a new (to us) van yesterday. A 2016 Honda Odyssey fancy pants version with heated leather seats and screens in the front and a cooling box and seating for eight and rear temperature control and SO MUCH SPACE and everything about it is wonderful. It’s a little bit of a price stretch at the moment, BUT it’s worth it because our old van was basically falling apart at the seams.
Sam is finishing up his testing to go back to public school in the fall. A lot of it relates to him being almost obviously on the autism spectrum and scoring SUPER HIGH on ADHD tests, and we want to make sure that he’s able to get whatever accommodations he needs in school next year so that he doesn’t fall behind at all (because he’s absurdly smart but he’s also very… mmm, executive dysfunction-y). We’ll be having that meeting the day before Kyle and I leave for Florida next month and with any luck, they’ll really see him and be able to give him whatever accommodations he needs next year.
The twins continue to excel in school, which is wonderful. Their vocabularies are soaring, and they’re absolutely loving their class and their friends. Carrie, who was already pretty conversational, has added so much vocabulary to her speech, and it’s hilarious. She’s got enough vocabulary to express herself more clearly but she also sometimes grasps for words, like the other day, she wanted us to close the car windows because they were messing up her hair, so she said, “Turn it [the windows] off! My hair is not working!” And that was adorable. And Isaac has gone from being incapable of expressing himself when things are hard to being able to confirm in words what he wants when we ask him. Today, he informed me that he wanted the lights turned back on in his bedroom (because he didn’t want to sleep yet), and he’s just overall been so much more talkative and happy because he has words and is understood.
Also the cats are awesome. And Kyle is awesome. We’re all awesome.
Spring is trying its best to start in these parts, and thankfully, it feels like life itself is coming back to life. And that’s a good feeling.
Do you ever get in one of those foul foul moods? Or not really a foul mood, but a mood where everything you want to talk about comes out tinged with complaining? And you don’t want to be that person that nobody wants to talk to or about because they’re always complaining, but it’s just. There.
I feel like that’s me right now, so close to the end of this pandemic, hope being dangled in front of me, but still far enough away that something or someone could ruin it, and maybe because things feel mostly good, the bad is amplified somewhat? I don’t know.
I try to do the gratitude thing, but that feels disingenuous, like yeah, I’m grateful for a LOT, but that doesn’t make the bad feelings go away any. And I want to be honest in my writing, but I also don’t want everyone to be like “ugh, Abby’s complaining again, bye.” Because I know things aren’t that bad, BUT.
I guess I can talk about the angst first and then end on a good, or better, note. The angst stems 100% from my sciatica and how it makes me feel so… limited. Because I am limited. I don’t know if it’s fear of pain or actual pain, but I’m constantly finding myself incapable of doing things that used to be easy for me, like cleaning the house or taking a walk or standing in the kitchen cooking dinner for the kids. It’s not the worst thing ever, like my pain isn’t back at Thanksgiving levels, but I think on some level, every time I feel a twinge, I worry that it’s going back there, so I limit myself.
I’m fortunate enough to have a really understanding husband who would rather I limit myself now, before it gets bad enough that I like. Need adult diapers at not even 40 years old. But it’s still frustrating. I don’t know how to explain it, really. It’s like one day, you’re able to do things, and then the next, you find yourself stuck for an indeterminate amount of time. You forget that there’s an issue because you’re feeling better, so you start picking up stuff off the floor, but then two minutes later, you have to sit with your feet up for another ten minutes so that you stop hurting. It is SO dumb.
And it’s so easy to say “well, do two minutes at a time!” but it’s somewhat Sisyphusean or worse. You do what you can but then you’re out of commission because you pushed yourself.
So that’s kind of colored my last month or so, and it’s annoying, and I hate it. I’m going in on Thursday to get an MRI and find out exactly what is causing this issue and if it’s something I can fix through targeted physical therapy or if it’s something I need surgery for (though the fact that it’s lasted as long as it has makes me think that probably we’re past the PT working point). Insurance companies like to go for minimally invasive steps first, but I’m like… I’m clearly having issues here that are more in-depth than just oopsie, threw out my back.
But yeah. Background radiation of my life, etc.
The twins turned three about a week ago, and it was a fine time. They were happy with the day, even if it kind of went by in a rush (one that I’m not getting into, but suffice it to say that my annoyance at being unable to do stuff definitely made things less fun than they otherwise would have been).
I ended up turning their day into a much bigger Thing than it normally would have been (for Sam’s third birthday, for instance, we just went to a museum and had cupcakes) because their last birthday ended up being a flop because Covid, and I guess I wanted this year to be something of an improvement. And I think it was, but man. Twin birthdays take a lot out of you. You do something that seems like the bare minimum, except because you’re doing it for two humans instead of one, it actually feels like you’re overdoing it by a lot.
But again: they’re happy. Which is what really matters.
Happier news without the asterisk, they started school last week! Early Intervention ends when your kid turns three, so they transferred to our town’s public preschool the day after their birthday, and so far, they’re loving it. We’ve yet to have one of those separation anxiety crying days, not even on the first day (maybe them being in the NICU desensitized them to going away from us for a while), and every afternoon, they come home talking about how they had “so much fun!” Their crafts are starting to cover the fridge and walls, and I’m just relieved that they’re able to do the art projects they love so much without me picking up after them.
It’s surreal having kids going to school in person. I’m a little worried because Massachusetts has been trending upwards in terms of cases, but at the same time, the school of ~600 people (kids, teachers, staff, etc.) has only seen about 12 cases in the entire year, so whatever they’re doing seems to be working. I wonder if it will still work once the schools are forced to go full time in person in April (which I do NOT agree with–it’s two months, y’all, just take the L and prep for next year), but the kids are so good with their masks that at least I feel like they’re protected on some level.
I have no idea what their days at school look like. I know they’re getting speech therapy, physical therapy, and occupational therapy, but I have no idea what the schedule is, anything like that. And I’ll be real: it feels SO GOOD to not know. SO GOOD. Because it means that I’m not the one coordinating it! I don’t have to shepherd them into a Zoom call that they won’t pay attention to, I don’t have to freak out because I forgot a meeting, I just get to use the mornings to do Sam’s homeschooling and then let them sleep the afternoons away.
It’s very nice.
Sam, meanwhile, is in the process of being evaluated by the school to see how he’s done this year and what accommodations he’d need in the next school year, if any. His therapists across the board have suspected that he’s not neurotypical, but waitlists to get a diagnosis from a doctor are a year long at least because of Covid, so we’re trying to push things through with the school first and see what they say. Last week, he spent three days doing academic testing, which went very well. His tester remarked that he’s clearly VERY smart, and that he does seem to have some executive dysfunction issues, but that he’s also good at getting himself back on track.
(at least when I’m not around, but I figured that would be the case, because he’s comfortable enough around me to melt down completely and know that I’ll never stop loving him or being blown away by him)
We’re next going to talk with the school psychologist, just to see where he is there, and hopefully, we’ll have a game plan in the next couple of weeks. I’m committed to sending him back in the fall, partly because I’m getting to the academic point where I’m a little out of my depth (he’s already learning area and perimeter, and algebra can’t be far behind), partly because he needs to be with his friends again, and partly because we both miss me just being his mom, not his mom and his teacher. It’ll take the pressure off both of us for him to be back in public school, and I’d be surprised if it weren’t safer for him to do so by fall.
And I think he’s in a good place to go back. It usually takes some cajoling, but he’s been keeping up with his schoolwork, and he’s on track with other first graders in that regard. I’m excited to see what second grade brings for him, and what life with the kids out of the house for a couple of hours a day brings for me.
(I just realized that I haven’t been home alone with nobody else in… probably six years? Or so? Maybe four? It’s hard to say)
Meanwhile, vaccines are rolling along in our house. I’ve got asthma and am obese, so I got to be the first in the house to get a pair of Pfizer jabs, the last one on Saturday. Side effects were minimal–I was REALLY tired on Sunday (slept for ~15 hours because my husband is wonderful and hung out with the kids on his own all day) and then had pretty gnarly body aches when I went to bed last night, but things have since calmed down. No fever, no chills, certainly nothing at all compared to actual Covid.
I’m hanging out on my phone a lot to try and get my mom an appointment for her vaccines, too, since she’s part of the group whose eligibility just opened up today. This remains a tricky thing to do, but I’ve been keeping up with vaccine news, and considering how manufacturers are ramping up production, I feel like supply will overtake demand in the next couple of months, and how good will that feel? And with any luck, that will correspond with cases going down, with hospitalizations going down, with deaths disappearing entirely.
It’s just that end of the school year feeling, that time when summer is RIGHT THERE, IT’S RIGHT THERE GUYS, and you just. Don’t care about classes, you don’t care about homework, summer is RIGHT THERE (and GOD, so much worse when you’re a senior in high school or college, you’re just like THIS IS ALMOST OVER, HOW AND WHY SHOULD I CARE??). You can’t think about your finals or about anything but summer being RIGHT. THERE. And YET, despite that feeling, it’s important to still be careful. Still wear a mask, still be safe, still make good choices, because unlike skipping homework during senior year, skipping out on responsibilities as the pandemic starts to cool down will genuinely have consequences (see: Brazil), consequences that can be deadly.
In other words: take care of yourselves, and each other.
I feel like this blog has been an absolute downer for the past year, though understandably so. The last year has SUCKED. I don’t think anyone had an objectively good year last year (except Big Daddy Elon Musk, but billionaires don’t count towards people having good years), and I was scrolling through my blog reflecting on how… just MLEH I’ve been about everything in the last twelve months. And again, completely understandable, but also I feel like that can’t have been fun to read. I’m sorry.
But here we are, encroaching on March 2021, one year of pandemic and social distancing and 500,000 people dying because assholes and masks and so on and so forth, and I’m actually starting to feel something that tickles a bit like hope. Real hope, not the false hope that kept popping up over the last year when people were naively like “it’ll be gone by summer!” or things like that. Real, honest-to-god hope.
After all, this is roughly the timeline they told us to expect back in mid-March of last year, when everything shut down and everything changed. Mid- to late-2021. We’re right on schedule.
I’m getting my first Fauci ouchie tomorrow, 4:30 p.m. I don’t think I’ve been this excited about a needle since the first injection for IVF, way back in 2016. My state, dear old Massachusetts, has kind of bungled the process for people to make appointments–my dad, 68 and with a heart attack in his medical charts, hasn’t been able to get an appointment, so I’m refreshing all sites frequently to try and snag one for him–but by some flash of luck, I woke up the other day to an alert on my phone telling me that a CVS near me had appointments available. I fit squarely into Tier 2 of the second phase of vaccine rollout up here–obesity and asthma qualifying me as medically at risk of a Bad Time–so I signed up.
And I’m ready.
(even if I’m a bit frustrated that Massachusetts hasn’t bothered to start prioritizing teachers yet while other states have and the websites to get appointments are basically strung together with some twine and duct tape and a few prayers and GOD, I wish I could take a hammer to said websites and get my handful of coding friends to rebuild them functionally from the ground up)
I have plenty of friends who’ve already been vaccinated for various reasons, ranging from frontline workers to teachers to people with medical issues and everything in between. Of that plenty, many have experienced the “your immune system is working” side effects–the aches, the fever, the chills, the generally feeling like shit from about hour 33 to hour 48 after the second dose. I’m ready for that. Kyle’s been keeping in touch with his boss about what’s going on, so with any luck, when I get the second dose, I can just coast through all of those side effects feeling vile but being mostly unconscious.
But I’m ready. I’m ready to not be afraid to go places besides Target or to not be afraid when I’m IN Target because the people behind me don’t seem to grok that six feet and six inches are not the same thing. I’m ready to feel like I’m not going to be putting myself in more danger if I have to go to the doctor for whatever reason (seriously, in the past year, I have avoided going to the doctor so many times I probably shouldn’t have because I didn’t want to accidentally expose myself). I’m ready to hopefully not be a link in a chain of people getting sick (like we don’t know yet that the vaccine prevents or reduces transmission, but the science–even with the new variants–looks pretty good so far).
And I mean. When even the most conservative estimates have everything easing up by summer, it’s hard not to be hopeful, outside of the trenches.
(in the trenches is another story, and every time I talk about hope, I think of my friends who do work on the frontlines and wish that I could somehow have a million dollars each to give them so that they could go on the most luxurious, relaxing, magical vacations of all time. Like hell, wanna spend two months on sabbatical in Hawaii? Go nuts, aloha. French Riviera whispering your name? Au revoir, you amazing heroes)
I’m getting vaccinated tomorrow, and then the twins turn three on March 14 and start school on March 15. Sending them in person isn’t a decision we made lightly; even though the school they’ll be attending has had exactly 10 cases out of 300 students and about 50 staff (and none of them in the preschool), the risk isn’t zero. On the flip side, though, Isaac has stagnated and regressed so much since daily ABA stopped, and I HATE phrasing it like that because it makes his autism sound like this horrible thing, and it’s NOT, but at the same time, I can feel how badly he wants to communicate with us, and goddamnit, I can try with the rudimentary PECS and I can say the words and do all sorts of things as his mom, but because I’m his mom, there’s a lot I can’t do. I’m not trained or qualified to do so much of it.
He really was making such incredible progress when he had ABA five times a week, and I know the language is there. And he wants to express himself and is SO HAPPY when we understand him. And preschool will give him an opportunity to be better understood, whether that’s vocally or through signs or through PECS. Whatever he needs. I just want him to not feel like he can’t be understood, because to me, that’s about as lonely and terrifying as it gets.
And Carrie is something of a ragdoll. She’s clever and sweet, and where communication is concerned, she’s at age level if not above it. BUT when it comes to physicality, her muscle tone is almost comically low. She seems comfortable wherever she is, which is great, but she gets tired quickly because she has to put more effort into making her muscles work than a kid like Isaac (whose muscle tone has always felt high to me because he’s always. so. tense.) or even Sam does. It impacts her ability to use her fine motor skills with holding a pencil or getting herself dressed and undressed, and I have no doubt it’s impacting her digestion. In the long term, it’s going to cause problems for her–she’ll be in pain, and I don’t want that at all. And if we can get started fixing it now, if I can get her therapy now, maybe she won’t follow in my footsteps and end up in remedial gym or getting an MRI for sciatica and feeling like she’s in her 90s when she’s not even 40 yet.
Plus, they’re SO good with masks. It’s kind of surprising, honestly. I would’ve expected the twins to just hate wearing a mask and to fight it all the way, but the two of them are absolute champs. They even have Barbie and Hot Wheels disposable masks along with the other disposable masks I’ve gotten them for the remainder of the school year. I think we’ll be okay. I think they’ll thrive in school, and I think we’ll be okay.
For the first time in forever…
…I can kind of see the rest of the year clearing up, like the way the sky clears up when it finally stops raining after a particularly long stretch of wet days. I feel like when I say, “when the kids go back to school in September…” I’m not doing some sort of wishful thinking; I’m saying something that will happen. When Sammy goes back to school with his friends, when the twins are in preschool five days a week, when I see my extended family for the first time since Christmas of 2019. WHEN, not IF.
Speaking of Sammy going back to school (WHEN that happens), I got in touch with the special ed department at his school to see if they could evaluate him for ADHD and autism or at least just to see if he has anything that would require an IEP to deal with in the coming year. His therapists have him on a waitlist to see if he can be evaluated outside of the school, but because of Covid, that waitlist is excruciatingly long–we’re talking years–and I don’t want him to start second grade at a disadvantage. I know that whatever else is going on, he deals with a lot of executive dysfunction and hyperfixation. I know that his mind goes so fast from one thing to another to another, I know that he acts like boredom is torture. I know that the idea of failing at something even a little brings him to tears, no matter what reassurances we offer. I know that if he’s asked any question about himself, no matter how benign, he shuts down and furiously refuses to answer.
I don’t know what that all adds up to. I do know that it affects his schoolwork. That he melts down when something is hard for him, that it’s an absolute WAR to get him to do his social studies and reading. That he doesn’t focus, can’t really focus, even on subjects he loves. But give him Pokemon or Minecraft or the deep sea, and he will tell you everything in excruciating detail. That he’s terrifyingly smart–doing third grade math as a first grader and absolutely OWNING it–but that he needs someone to help him apply that intelligence.
And I don’t know. Maybe it’s that I’m not as good of a teacher as I like to hope I am. When he’s on, he REALLY gets stuff. He’s getting straight As in math without even blinking, and I think he’s doing okay with improving his spelling and handwriting, but I feel like there’s something about his learning style that’s out of my reach, and if nothing else, I’d like to see if the staff at his elementary school can identify it.
A lot on my plate. Again. I can sort of feel my sciatica flaring, but I’ve been more careful to take time off and be diligent with my medication because I am NOT doing that again. I have an MRI to look at it up close on the 8th, and until then, I’m just taking it all one day at a time and knocking items off my to-do list little by little.
And feeling like the sun is starting to peek through the clouds. Which is nice.
The countdown is on, my friends: 39 days until the twins start preschool in our town’s integrated special education program.
I’ve had this countdown going for a while, but until Wednesday, it was unofficial. And admittedly, the situation isn’t ideal, but
Well, let’s start from the beginning.
Back in 2018, in August, Isaac started working with Early Intervention therapists because he had torticollis in his neck (which means that he had a hard time turning his head, probably as a direct result of it being firmly wedged up against my pelvic bone for the last 8 weeks of the pregnancy). He saw a physical therapist fairly often to gently ease him into having less of a stiff neck. About four months later, Carrie joined him in the arena of physical therapy, since she was being very slow in terms of gross motor skills.
As time passed, both twins gained more services–occupational therapy, speech therapy–and Isaac was eventually diagnosed with autism; and then, Isaac started ABA therapy and did fantastic with that, too. Up until the pandemic, the services we had were doing a fantastic job ensuring the twins were progressing in their development at an appropriate pace, and they had even started attending a once a week playgroup so they could start learning how a classroom worked for when they started preschool.
Because, you see, the beautiful Commonwealth of Massachusetts pays for therapy up to kids’ third birthdays–that’s what Early Intervention is. After the age of three, though, the state stops paying, and you have to hope that your kid qualifies for special ed preschool or even with insurance, you’re going to be shelling out a LOT of money for therapy.
So anyway. The world tried its damndest to stop last year but failed to do so, and the twins’ third birthday is rapidly approaching. Amidst my planning for a nice, lowkey celebration (read: no party whatsoever, maybe just my parents coming over, cupcake flavors, presents all purchased), we’ve also been planning for that transition, because as of March 15, the twins’ services won’t be covered under Early Intervention anymore.
None of them. Not speech, not PT, not ABA.
So about two weeks ago, we took the twins into our primary school for their assessments. It’s the same school Sam attended last year and will attend in the fall, and he was really excited and proud of it, talking about it as if he hadn’t been there in decades (“oh, yes, I remember the auditorium!” “of course, that’s the office!”). The preschool was set up in such a way that everything was absurdly spread out, which was a good sign; with OT and PT, we aren’t going to be able to keep the twins six feet away from everyone all the time, but seeing that the classroom was set up in a way that physical distancing was encouraged when it could be was reassuring.
During the assessment, Kyle and Sam and I sat at one desk off in a corner of the room while the twins played with the therapists in another corner. Carrie immediately took to the dollhouse they had and quietly set about tucking a plastic kitty she found into bed, while Isaac stood in one place and observed everything while smiling that amazing smile of his and making every therapist and teacher fall in love with him.
The whole thing lasted about an hour, maybe a little longer, and we were keeping our fingers crossed the whole time that both twins would end up qualifying for services. We never doubted that Isaac would–after all, he doesn’t speak independently yet–but we weren’t sure about Carrie. She’s behind, but her delays aren’t as obvious as Isaac’s, and her delays could probably be helped with a longer, slower path, if at all.
BUT the amazing therapists saw exactly who our twinsies are and saw where Carrie was struggling and where Isaac was struggling and recommended that they both attend preschool five half days every week.
And with the pandemic going on, I’d be reluctant to agree to that because there’s all these new variants making everything worse, and who knows when any of us will be able to get our Fauci ouchies, but today, we got the IEP with the breakdown of services.
If we leave out the preschool aspect (which would be roughly ~5 appointments per week), we’re still looking at $175/week for Isaac in copays and $125/week for Carrie in copays for all of that therapy. And they wouldn’t get that level of therapy outside of school, BUT a lot of it is stuff I feel like they’d really excel with having, stuff I never would’ve thought of, stuff that I don’t know they could get in an at-home environment because of the pandemic.
Carrie, for example. I’ve worried about her core strength and muscle tone for a while (she’s always been something of a ragdoll floppy baby–never in a way that makes you terrified, but she’s very good at molding herself to you), but never loudly enough to raise alarm bells to therapists and doctors. She demonstrated it so well during her assessment, though, that they planned for her to have just as much PT and OT as Isaac, and that’s a huge relief.
And Isaac has the full cocktail of services–PT, OT, speech, and ABA, all provided by the school. And I’m REALLY relieved. His ABA therapists have been great, but because of the pandemic, they’ve been really sporadic in their availability–going back to school, having to quarantine because a family didn’t bother to mention they tested positive, just unavailable because nobody wants to be going into homes these days. Giving him the opportunity to get those therapies in person five days a week… GOD, it’s just such a weight off my shoulders. He did so well with just ABA in the mornings from March through October, I can’t wait to see how he takes off when he’s getting all of these therapies all the time.
So everything is in review, I am buying six billion child-sized surgical masks every week (they come with Barbie and Hot Wheels prints at Target!), I am waiting for a TON of paperwork from the school, and I’m feeling an honest weight lifting off me.
39 days. There’s obviously some additional relief there, with me suddenly having MUCH calmer mornings than I’ve had in three years (let me tell you, in September, when we’ve all gotten our Fauci ouchies and everyone goes back to school full time and Kyle is commuting to the office 2-3 days a week and I’m ALONE for the first time since ~2013, omg, I am going to party SO hard, by which I mean I am buying a box of a dozen doughnuts after dropping the kids off and eating them ALL BY MYSELF and then enjoying the sugar coma until it’s time to pick the twins up), but most of it is a mixture of apprehension about Covid and relief about the services continuing with a much more consistent delivery that won’t completely bankrupt us.
I’m taking my time processing it all, and in the meantime, I’m just quietly shopping for first day of school outfits. In March. For twins. Who are almost three.
Because I can’t make the pandemic magically go away (if only), and I can’t look into the future and see that these services will work out really well for them both, but I can make them both look hella cute on their first day.
This was going to be a long blog post about the inauguration and politics in general, but that leaves me feeling tired. Suffice it to say that I’ve breathed a sigh of relief, but I also acknowledge that there’s a lot of work that needs to be done, and I’m focused wholly on the future and how to improve things instead of bemoaning the immediate past. The past informs the direction that we need to take as a country (a wholesale rejection of white supremacy, measures to rectify massive wealth inequality, having an actual PLAN for the pandemic instead of just pretending it doesn’t exist so we don’t spook the markets, etc.), but I’m through arguing about the past four years. They were politically terrible. Let’s move forward.
Instead, because I don’t feel like getting my blood pressure up today, I’m talking about life overall, or life in our house, at least.
Because it goes on. Like I said last time, insurrections, elections, inaugurations, Bernie with his mittens, it all happens and it all affects you, but at the same time, life goes on. You read a headline, you feel angry or sad or hopeful (which is new), then you have to run to the post office or call the kids’ therapists or something or another. Maybe you discuss it, you sign a petition, you run to a protest, you donate, but life is going on with or without you.
Life goes on.
The twins had their preschool evaluations on the fifteenth, and it went well, I think. They met with the entire preschool team, with the physical therapist running the evaluation while the others–the teachers, the SLPs, the OTs–took notes and observed. Kyle, Sam (who was there because we didn’t have childcare for him), and I sat in a corner of the room that was separate enough for the twins to not zero in on us instead of what they were supposed to be doing.
They started out pretty shy. Carrie warmed up to the situation first, when she saw that they had a dollhouse, because she is quintessentially what toy marketing execs want a little girl to be. She loved that the dollhouse had a little toy cat with a little toy toilet and a little toy bed, and she spent a great deal of time meticulously tucking the toy cat into bed or settling it on the toilet, not really talking about what she was doing, just doing it. She was SO quiet that the SLP had to come over and talk to us about her speech, and we talked about her on bad days–preferring one-to-two-word phrases over sentences, even though she CAN use sentences, and murmuring nonsense under her breath to tell you things. She’s very stubborn, so if you want her to talk to you, she just will not do so.
She also, apparently, struggled with her fine motor strength–not her accuracy, but her strength, coping the OT’s movements with her crayon but not really applying a lot of pressure.
And, really, much of the evaluation was for her. Isaac’s struggles are pretty easy to spot and pretty easy to describe. He spent the first ten minutes of the evaluation standing stark still like a statue and smiling shyly behind his mask. Though he eventually warmed up, he’s mostly nonverbal still (which is more of a “behind” thing than a permanent thing–he’s about where Carrie was between 12 and 18 months, and I think he’s mostly stagnated because the pandemic has prevented us from having in person speech therapy for a year now. Like, we work with him, but we don’t necessarily know what to do to encourage him to, for example, speak independently instead of parroting us) and has exactly zero sense of danger, which combines poorly with his extraordinary fine motor skills.
(which sounds kind of cool, but you don’t expect your two-year-old to figure out how to unlock a window, create a tower of stuffed animals to reach the lock, unlock and open the window about two inches, figure out how to open the screen, open the screen, and then start tossing his toys down from the second story window. That’s a surprise. So yeah, the windows in the twins’ room are duct taped shut now)
But the evaluation was both to get an idea of where Isaac is and to see if Carrie actually qualifies for the preschool’s special ed program. She’s right on the border where she MIGHT need the extra help, but she might also catch up with her peers by just being with them. It’s hard to say. And it’s not a huge deal either way–when I talked with the head preschool teacher over Zoom, she explained that Carrie will have a spot in the program no matter what, it’s just a question of whether she’s there for free as a special ed student or whether we pay the $140/month tuition.
And even that isn’t a big deal. When Sam was in preschool at the twins’ age, we were paying probably… mmm, I want to say about $200/week because it was a full time private daycare. Which I LOVED, but I can even point to ancient blog entries I wrote here about how I realized that having twins meant no more daycare for anyone. So back then, I was wondering “omg how are we going to even afford preschool for them, that’s $400/week, that’s $1600/month, how can we do that, that’s a second mortgage?”
The idea of both of them going and us only paying $140/month? $35/week? It’s kind of miraculous. And if it’s free, I’m just going to do a dance.
We’ll find out sometime this week how things went, and then we have a meeting on February 2 to set up their IEPs (or IEP if Carrie doesn’t need one). And that’s WILD to me. I’ve talked so much about IEPs with so many people (my sister always had one, my mother-in-law is a special ed teacher, one of my besties is an SLP, etc., and that’s not even counting the huge village of parents of children with IEPs who are like “yes, I will help you with this, I will tell you how I best advocated for my kid”) that actually diving into one is like
Let alone diving into TWO.
We’re very fortunate. Our town is apparently one of the best in the area for special education from top to bottom (which isn’t surprising; everyone here is some degree of wealthyish and it looks like fucking Happy Valley from “Mickey and the Beanstalk” and then there’s me with my overgrown ugly lawn covered in dead leaves like “oh yeah, I totally belong here!”), so while I know I’ll have to fight for a lot of things, I don’t feel like I’ll have to fight as hard as I would have somewhere else.
(like apparently, my hometown, which is just a few miles down the street from me, has one of the WORST special ed programs in the area. They used to be good, according to all of our therapists and contacts, but nowadays, things are just garbage from top to bottom)
It’s a lot. But I feel ready.
And life goes on.
And it might end up being THREE IEPs, anyway. Sam’s been having in-home therapy for a couple of months now to deal with, oh, a whole bunch of things. His anxiety had reached a point where he wasn’t sleeping in his own bed at all, he has days where he barely eats, he’s an absolute ping pong ball if he doesn’t have something with a screen drawing his attention… it’s a lot. Kyle and I had a sit down talk with the therapists over Zoom on Monday, and they suggested having Sam evaluated for both autism and ADHD.
The autism bit has me a bit skeptical. They were noticing a lot of the outward signs, and I agree that Sam has a lot of sensory issues, BUT if he is autistic, he’s also the most adamantly extraverted autistic kid I’ve ever met. And that’s not to say that autism can’t look like that–it’s a sundae bar, after all, and you can have all sorts of weird varieties of stuff going on–but it’s just. I hate to say this because it’s so not clinical, but he doesn’t ping my autism radar the way Isaac did from ~day one. Isn’t that a dumb thing to think? Like “mom hasn’t ever gotten autistic vibes from him, not even a little” is not a good diagnostic criteria, and should not be used as a diagnostic criteria.
I took one of the screening tests for him, the one they use in clinical settings, and maybe I’m too close to him to see (but unless I’m missing something, I feel like a lot of these tests are just asking parents how their kid is anyway and then observing in a play setting?), but he scored way too low on the autism test to even warrant further testing. And again, maybe I’m just too close to the situation, but like. I can’t imagine I’m missing THAT MUCH, you know?
Now, on the ADHD test, on the other hand, he scored off the charts. Everything from his lightning fast mind to his constant movement (not stimming, just MOVING) to his general breakdowns if he gets a question wrong was right on there. But professionals who see him in brief settings keep saying “no, he doesn’t have ADHD, but he’s probably autistic.”
I don’t know how to respond to that! I go, I do the assessments that are available, and maybe I have confirmation bias or maybe I’m too close to the situation or maybe I’m just crazy, but I end up getting super low scores for autism and super high scores for ADHD and I just ???? am I missing something? I see this child all day every day. He’s my son. We talk all the time. We snuggle up at bedtime and go over his day. He tells me matter-of-factly how he feels about so many things. I know when I can and can’t push him on things, when we can work through something or when we need to disengage from it. I’ve SEEN him from the moment he was born, and I’m just so confused here. Are they seeing something I’m not? Are we all just misinterpreting the same information?
Anyway. We’re trying to get in touch with someone to schedule an evaluation for the next soon, because if he does have autism or ADHD (or sensory processing disorder, which I also suspect), I want to know ahead of time so that I can plan IEP meetings for when he gets back to school in the fall. If nothing else, I want to be able to talk to the school in general to say that while he’s soaring in math and science, and while he can read perfectly well, he struggles with handwriting, with creating sentences, and with reading comprehension.
Life goes on.
It goes on for me, too. I started my inauguration day with a visit to an orthopedic specialist to talk about my back. Here it is:
Note how spines are not supposed to look like that. I apparently have slight scoliosis (less than a 25 degree curve, which means I’m not really a candidate for surgery, more for just PT and figuring out how to live life overall with a wonky spine), some twisting going on (though it’s unclear if that was just posture-related or is an actual Problem), and bone degeneration that’s a bit more than usually expected at my age (not quite 40). I’m supposed to be getting on a calendar for an MRI sometime in the next near future so that we can see what nerve involvement is there, and if there is nerve involvement (which there is, I can feel it), I’m a candidate to get an injection of anesthetic and steroids into my sciatic nerve in order to keep it from, you know, murdering me.
It’s both vindicating and frustrating. On the one hand, I’m able to point to it and say, “LOOK, see, the fact that I’ve thrown my back out at least once a year since I was 20 has a REASON behind it. I’m not being overdramatic, I do have some issues that could stand to be addressed in numerous ways!”
But on the other hand, I feel frustrated that I’m just learning about this now, that I didn’t think to get it examined before, when I was throwing my back out with such regularity, not necessarily because I was lifting something wrong or doing something weird but because my back is just prone to spasms. I could’ve spent years working on this and not been here, feeling miserable and useless.
Oh well. The best time to plant a tree is 20 years ago. The second best time is today.
And life goes on. The pandemic is slowing, slowing, slowing. It doesn’t feel like a very fast slowing (because how would slowing be fast??), but it’s happening. If President Biden is able to really get his vaccination plan off the ground, maybe summer will be normalish, maybe we’ll go on a very short vacation to like Hershey Park and Sesame Place, maybe this isn’t a forever sort of thing. Maybe we’ll get on a plane again someday, maybe we’ll travel across the country and the world again. It feels possible, which is a huge step above where it felt even a month ago, and I’m grateful for that.
Because the wild thing was that before Wednesday, I was feeling really optimistic about this year; and I still am, mind you, but with the caveat that the first chunk is going to be a B I T C H, and the rest might follow suit, unless some serious changes start happening seriously soon.
I mean, things were really going well! Sam was having a very smooth first week back to school–we’d done all his times tables up to 9, we’d finished out a unit on description and attributes and were moving on to the senses, both ABA and Sam’s therapy had started back up and were going well, and even my therapy started with a really good session that left me feeling excited and motivated for whatever comes next!
And then Wednesday.
I don’t talk a lot about my politics, at least partly because I don’t know how to politically define myself. Words don’t mean the same thing now as they used to; a lot of the terrorists on Wednesday were thrilled to call anyone who disagreed with them a Communist, which is not at all what the word means. I can’t define my stance on economic issues with a single word; I can’t define my stance on social issues with a single word.
Whenever I take the (imperfect) political compass test, I end up solidly in the green square, but as anyone else in the green square can tell you, that tells you the barest of minimums of what I believe and think; so much liberal and leftist political theory is so nuanced that I feel like I need a serious polisci degree to actually be able to answer the question.
But here’s what I believe, without definitions.
I believe that, if we are to have a government that we pay money into (and we should), that government’s job should be to look after the people, all of the people, so that nobody goes hungry, goes without a home, goes without healthcare. If the government can do something to prevent any of those things, I believe the government should do something to prevent those things; otherwise, what’s the point?
I don’t believe the United States is the greatest country to ever have countried. I couldn’t tell you what country is the greatest country to ever have countried, because it’s a rare country nowadays that doesn’t have blood on their hands in one way or another, skeletons in their closet, that sort of thing. Putting countries on pedestals is such a dangerous thing, because it’s not realistic. It can make you think that a country is infallible; it can blind you to the things other countries do right because they aren’t your personal favorite.
I believe that we have work to do, and will always have work to do; that’s the nature of humanity. We work to care for each other now, just as we did tens of thousands of years ago while painting pictures on the walls of caves. Society as a whole is at its strongest when we care for our weakest members; conversely, refusing to care for our weakest members is a pretty good sign that we’re heading into “fall of Roman Empire” territory, and that we should probably be on the lookout for marauding Goths.
I believe that all humans deserve to be treated with kindness, dignity, and respect, no matter what they believe, the color of their skin, their ability or disability, their sexual orientation, their gender identity, the number in their bank account (or lack thereof), their nation of origin, their immigration status. At the same time, I understand the tolerance paradox: in order to promote true tolerance, the intolerant must not be tolerated.
(I also want to throw things when someone is like “hburr dhurr so much for the tolerant left” because none of us ever said we were tolerant of Nazis; that’s on you being a dumbass)
When I talk about politics, I don’t exaggerate to make a point. I grew out of that about 20 years ago. When I look at a group and say, “Wow, they seem like Nazis,” it’s not just me saying, “I disagree with them, and I must exaggerate to make myself look more right.” I don’t care about looking right or trying to paint my opponents worse than they are. When I say that someone looks a lot like a Nazi, I mean that someone looks a lot like a Nazi.
(which is such a pet peeve of mine; just because you called Obama a Nazi because you disagreed with him doesn’t mean that I’m doing the same thing when I say, “this person who wants to murder everyone not like them, who embraces fascist ideology, and has a literal swastika tattooed on their bicep is probably a Nazi”)
I don’t know why I’m enumerating all of that, except maybe to say that I’ve seen this coming since 2016. I remember when the election results made it clear what was going to happen; I was listening to Disturbed’s cover of “The Sound of Silence,” and I knew that if things didn’t go completely fascist, very quickly, they were at least going to try. And they are still trying, and I hate being right.
But the weirdest thing is how life goes on, you know? I was glued to the news all day and late into the night Wednesday, but Isaac still had ABA on Thursday, Sam still had therapy on Friday. I cleaned a lot of the playroom, breaking down Christmas boxes and putting away books. We had pizza delivered Friday night. I scheduled the twins’ preschool evaluation for this coming Friday.
You always expect that, during these Major Historical Events, everything just stops until things are resolved. Like whoa, hey, it’s Revolutionary War time, nothing is going on EXCEPT for battles with guns and ships and nobody is just living normal lives, but here we are. And shit, it’s the same all over the world. I remember reading one article recently where someone talked about how their camera roll had pictures of them out at a disco with their friends right after pictures of a building that was bombed just down the street from their house. The only thing that’s keeping life from moving forward more quickly is that there’s still a pandemic on, and even then, the vaccines should be widely available soon, so life will keep moving forward.
Are you supposed to keep working during a coup or can you take the day off?
I don’t know what’s going to happen in the next ten days. I’m afraid of them. People will tell me that I’m overreacting, the same people who said I was overreacting in 2016, and I want to believe them. I’m not losing sleep over this, thankfully, because I’ve got good coping skills (we’re practicing “radical acceptance” and also “sleep meds” right now); I’m not even being fully disengaged from my daily life because of it, because what can I really do?
If I’m losing sleep, will it stop more QAnon cultist terrorists from rushing government buildings like my almost three-year-olds when they want to get through the gate to the playroom?
If I’m constantly refreshing the news, will it stop the occupant of the White House from deciding that if he’s going down, we’re all going down with him, and starting a nuclear war?
If I’m NOT constantly refreshing the news, will it prevent a peaceful transition of power on January 20? Will it stop the FBI from arresting everyone involved in this disaster at all levels?
What can I do? I donate, I protest, I speak up when I need to do so, I stay informed, I vote, I breathe. I want stability, for my kids, for their future–no child should grow up in a land torn apart by war–so I pray to whatever may be listening that things get better. I read a book and escape to another world for a little while. I have some ice cream after dinner and think that I should probably take up walking and running. I count down the hours until my appointment for my sciatica. I live.