2020 is still garbage, but at least the garbage is starting to look like nice garbage instead of a complete dumpster fire on a personal level.
(globally, the dumpster fire still rages and leaves us with a LOT of work to do once the flames die down in the hopefully near future)
My time in the PHP has drawn to a close, but it ended on a pretty positive note. I actually stayed a week longer than anyone had planned because I started back on my birth control to try and calm some of the really wretched pelvic pain I’ve been dealing with for years now (still no idea when I’ll be having the laparoscopy to look at that, by the way, which is annoying). Back in April/May, we wondered if my birth control had contributed to my depressive downswing, so the psychiatric RN for the program wanted me to stick around another week in case she needed to make immediate changes to my antidepressant in response to my altered hormones.
BUT so far so good where that’s concerned, so my last day in the program was on Friday the 18th, and I’m now readjusting to the world. One of the biggest ways the program helped, I found, was that it kept me from getting super overwhelmed by the sheer volume of STUFF on any given day with twin two-year-olds and a six-year-old, because the program is over and I’ve found myself feeling overwhelmed again. Not like I’m drowning but just like parenting three kids, two of whom are two years old, one of whom is autistic, another of whom has a tentative diagnosis of ADHD, plus homeschooling the oldest, and all of that during a pandemic… is a little much.
Nothing has become less since I finished the program; if anything, it’s become MORE because the twins have to get used to me running ABA again and have been super clingy since I finished the program because MOMMY DON’T GO BACK INTO THE OFFICE AGAIN AAAA. The biggest difference has been that I recognize what’s going on and am able to stop it in its tracks with a bunch of techniques I’ve learned. It’s all dumb stuff that mostly relies on me recognizing that I am feeling overwhelmed and that I have a right to feel overwhelmed (and that, in fact, most people would also feel overwhelmed in my shoes), and that’s the hardest part. Depression is a sneaky monster, and it uses whatever looks even slightly like it to gain a foothold, and that’s the danger with it.
BUT BUT BUT
I’ve also got a lot of things in my corner now. Like a better dosage of my medication (same meds, just more of it, which has slowly but steadily been helping me get to a better place), and like tools to help me recognize when I’m feeling garbage (all written down in the now very FAT notebook), and with all of that working for me, a weirdly genuine optimism.
It’s weird to have optimism in 2020, but I do. The world is a garbage place right now, but there are still stars, and there are still Octobers and Novembers. Despite it all, people as individuals are good. The pandemic isn’t forever; even if things go horribly in November and incompetence persists past the point of overwhelming sense, pandemics eventually end. An overwhelming majority of the world agrees that climate change is an emergency that needs immediate tending. People care about each other. Vaccines are coming. And time passes so fast these days, which is how aging works, so by the time I’ve blinked twice, it’ll all be over and hopefully better for it.
I wonder if some of the optimism isn’t also because Kyle got a job.
No details here, because details there are still being ironed out, BUT the long and short is that it’s a FANTASTIC position that will not only help our family financially (our primary criteria) but will also look AMAZING on his resume, and I’m really proud of him for getting the position and persisting through these last ~5 months where it all seemed really hopeless.
The only downside is that the job is just north of Boston, an hour commute without traffic (lol no traffic going into Boston, bless). We’re going to drive the route as a family sometime in the next week, just to see how it looks and how stressful it is to get there and back again, like unto a Hobbit. The higher ups are pretty okay with Kyle working from home (since it means fewer days with hours lost to an exhausting commute), but it’s still a schlepp.
But. We’re going to make it work.
And with him working again, I feel like I can breathe again.
In other news (in bullet list format because I take my antidepressant at night now, so I find myself being completely useless well before I want to be):
I’m seeing a physical therapist for my everything. I went to the doctor about two weeks ago to see if I could do anything about my back pain that was coming along with the pelvic pain, and my doctor referred me to a physical therapist after taking an X-ray and seeing that my spine has a slight left curve and some minor bone degeneration (which is wild because I’m 36 and that’s not supposed to happen yet?). I’ve been doing those exercises for about five days and (a) ow, but (b) I’m already feeling an improvement. Essentially, the therapist found that my core muscles are a disaster area (no surprises here), so most of my exercises are focused on getting those working again so that the other muscles related to making me upright don’t dissolve from overuse.
Homeschooling Sam has been mostly good. He does better on days when we vary up how we study–read a story, get up and run around, watch a video, do some math. There are still more than a few days where he’s not interested in doing ANYTHING, but those days are becoming fewer and farther between. This week will be weird, since he’s having to wait to start until Wednesday (he had a doctor visit today and has a dentist visit tomorrow), but mostly, he’s blowing us away with how clever he is and how even things like third grade math are a breeze for him.
The twins are talking up a storm–parroting (Isaac) and making up the most hilarious sentences (Carrie), and it’s a delight.
And Isaac kept us up until 4 a.m. last night, so I’m going to cut this off here before my writing ceases to make sense.
I have no idea how long this is going to end up being, but I wanted to get it down on “paper” just in case someone else is going through something similar and wants to know if anyone can relate (because yes, I can).
About 18 months ago, I started having vague pain in my lower left abdomen, just a faint, bruise-like pain as I was trying to fall asleep. I could mostly ignore it except that last October, it got so bad that I couldn’t function, and I spent a morning in the ER over it, only for them to do a CT scan, observe that I hadn’t yet pooped that day, and diagnose me with a case of constipation that I should follow up with my gynecologist about (a.k.a., they had no fucking idea).
And I did. I’ve mentioned here before that my gynecologist is awesome. He’s one of those doctors who believes you when you say that you’re suffering, and offers you whatever avenues could possibly exist to alleviate that difficulty. When I was pregnant with the twins and started getting the really bad itching that led to an ICP diagnosis with Sam (albeit, at the very tail end of the pregnancy when I was ready to deliver anyway, and my body just said, “listen, get the kid out of me or I am going to turn myself inside out”), he believed that it was a real problem, even if the lab results didn’t reflect that, and referred me to whomever he could in order to get me treatment that worked.
(in the end, it didn’t matter a lot because not long after the itching started, Isaac decided that he was done with being stuck under his sister and I delivered them)
So his initial steps were (a) to get me a consult with an endocrinologist because my ovaries showed signs of being polycystic; (b) to get me a birth control prescription to try and regulate my menstrual cycle some; and (c) to get me a breast cancer risk assessment as an added bonus. And, admittedly, with the birth control, I wasn’t having as severe pain. It was still there, but it didn’t have the highs and the lows it had without the birth control. The problem was that I got super SUPER depressed (remember that?) and didn’t know if the birth control was to blame, and anyway, I was having so much breakthrough bleeding that the whole thing just seemed silly. I thought he’d said that I should stop the birth control when I saw him back in May/June for the depression, and he thought that the endocrinologist said that I should stop the birth control, but ultimately, the birth control stopped.
Now we’re getting into July/August. Early August, I suddenly had agonizing pelvic/abdominal pain, like the kind of pain where you feel like you can’t see or think or breathe when it’s happening. It lasted for three days, also around the time that I got depressed enough to need the partial hospitalization program. Well, tl;dr – I got my period on day three. A nasty period. One of those ones that’s just…
The pain was bad enough that I could’ve probably gone to the ER for it, but here’s the thing: when you’ve been dismissed in an ER for pain you’re dealing with, you don’t trust them anymore. What were they going to do–give me another CT scan, tell me I was constipated again, tell me to go see my gynecologist? That would be $250 that we didn’t and still don’t have thrown towards an exercise in futility, so I just… skipped the middle man. I called my gynecologist again and said, in essence
I went to see him last week and had an extensive ultrasound, both transvaginal and abdominal. He found nothing on ultrasound but did notice that every time the probe or someone’s hand pressed on a specific spot on my left side, I would writhe in pain. Even if it wasn’t showing up on the ultrasound, something was clearly going on, and he decided that it would be a good idea to do laparoscopic surgery to investigate.
I haven’t had the surgery yet; it’s not for at least another three weeks, maybe more, since his calendar for the month is booked solid. BUT basically, it’s an exploratory surgery to see if I’ve got any endometriosis hanging out.
Endometriosis is a condition where bits of your uterine lining (called the endometrium) somehow end up other places in your pelvis and abdomen. They don’t die there, though, and instead grow and shrink with your cycle like the rest of your endometrium. And it’s extraordinarily painful. If you’ve gone through childbirth, think about the pain of transition, and that’s about where I am right now. If you haven’t, imagine a giant bull has driven its horns into your lower abdomen and is using them to pin you to a wall. Every time you start to get used to having giant bull horns in your abdomen, he wiggles a little bit, just to make sure you know that yes, you have been stabbed by a bull.
Or at least that’s what I’m feeling. The other fun thing about endometriosis is that you can’t really diagnose it without getting elbow deep in someone’s abdomen or giving them an MRI, and the surgery is kind of the more helpful step because if the doctor sees endometrial cells while poking around, they can just remove them right then and there and give some temporary remission of pain.
(they can do this either with a knife or with fire, but a knife is the preferred method because fire can make your organs stick together, apparently, which sounds roughly as unpleasant as what I’m going through now)
So THAT is going on, and I’ve been having this specific bout of pain for five days now–my usual pain relievers haven’t been cutting it at all, so it’s this frustrating mess of misery, where I’m feeling mentally in a place where I want to get out and walk, I want to walk for 30 minutes, I want to hop in the shower and get clean, but I can barely stay upright for more than 2-3 hours at a time. I’m frustrated because this is depression behavior and would/will make it so easy to slide back to a bad place, but I’m just physically having such a hard time right now.
And THEN, since I’m on day five of being stabbed in the abdomen by a large bull, I went to see my primary doctor today, and she pointed out that while she definitely agrees that it seems like endometriosis (we purposefully didn’t bring that up to see what she’d say, and she said it, so I felt validated), she also thinks I’ve got some sort of wonky thing going on with my hips/spine, because when she pressed on my spine to see how it was doing, it made me scream and writhe and also because I couldn’t lift my left leg very far without it shaking because it hurt so much.
Now I have Xrays being processed, a prescription for horse tranquilizer levels of ibuprofen, a physical therapy consult, a laparoscopy to be scheduled, a partial hospitalization program, and a partridge in a pear tree.
AND I’m homeschooling Sam.
Honestly, occupying a physical form is so dumb and pointless, and I would be much happier, I think, as a being of pure light and energy (that could still eat, because let’s be real, brownies almost make the horrifying ordeal of being mortal worth it).
I’ll hopefully have updates on all of this hot mess soon. Right now, I’m feeling just barely well enough to sit up and spew words on a page because the huge ibuprofen hasn’t worn off yet, but it will fairly soon, and then it’ll be back to wondering if my uterus really is wandering my body while possessed by the devil. In the meantime, please enjoy Sam’s back-to-school pictures and the knowledge that, despite everything, he’s done really REALLY well with the first two days of homeschool.
I was an adult before I learned what happens to a caterpillar when it’s in a chrysalis, mostly because between the age of about seven until adulthood, the metamorphosis of a butterfly just wasn’t at the top of my priority list of “things to know about.” I knew that butterflies had four steps to their lives: egg, caterpillar, chrysalis, butterfly. I knew that I got really excited whenever I saw a butterfly. But I never really cared to find out what the process of changing from a caterpillar into a butterfly looks like.
(the process of changing from an egg to a caterpillar is basically the same as egg to chick or egg to leopard gecko or egg to spider baby: you get out and you are the thing)
I suppose, even into adulthood, that I’d always assumed it involved the caterpillar just sleeping for a couple of weeks and growing wings while asleep, despite that butterfly bodies and caterpillar bodies look so very different. Maybe when I was smaller, I’d thought that it involved more thought on the caterpillar’s part, like they spent two weeks in front of a closet full of wings trying to decide what color to wear. Had I been a child with access to Sailor Moon (which I was not), I’d probably have imagined a teeny tiny magical girl transformation within the chrysalis. As far as I knew, those things were magic.
Well, as it turns out, the magic of turning from a caterpillar to a chrysalis to a butterfly is kind of messy. Essentially, the caterpillar’s body digests itself from the inside out. Everything it used to use in order to process the leaves it ate instead turns and just… eats its body. All but a few tissues of the old caterpillar are broken down and destroyed as the biological processes that create a butterfly take place.
(moths do essentially the same thing, except they have cocoons, which are silky, instead of chrysalises, which are hard)
Imagine if that’s how puberty worked. Your kid suddenly starts eating like a bottomless pit then finds a place to hang upside down by their ankles and wrap themselves in a random suit of armor. If you open the suit of armor anywhere within about two weeks, you’ll find nothing but goo because your kid’s stomach acid just devoured them, and then when they come out two weeks later, their legs and mouth are the same, but the rest of them is completely different.
Bugs are weird.
So anyway, week one of partial hospitalization!
Every day starts at 9:00. About fifteen of us assemble on a Zoom call, which functions pretty similarly to most non-work Zoom calls. Some people are in their living room, some people are in their bedroom, some are in their office, some are on their phone and we get to see the entirety of their house over the course of the day. One of our team of five therapists (we also have two psychiatric RNs) comes on, and we do our check-in.
Check-in is a little bit like checking in for a doctor’s appointment except that nobody sees your weight or tells you to take off your clothes afterwards. We’re asked a series of specific questions about the last 24 hours (or weekend, if it’s a Monday): what did you do last night, did you have any challenges, what sorts of coping skills did you use, things like that. The two big questions end up being “how are you” and “what do you want to accomplish during today’s session?” The first question seems pretty straightforward, but when you’re in a partial hospitalization group for mental illness, it’s anything but. We’re also not allowed to use any noncommittal answers: no “good” or “okay” or “bad.” Every day, we receive a list of potential mood descriptors that we can use. Instead of “good,” maybe you’re “content” or “reassured.” Instead of “okay” you’re “nonchalant” or “preoccupied.” Instead of “bad” or “sad” you’re “pessimistic” or “lonely” or “restless.” The idea there is to get us to really narrow down our feelings so that we can identify where they’re coming from and what, if anything, will help us cope with them.
The other question is pretty straightforward, sort of, but we have to give a concrete answer. Something like, for example, “I want to listen” or “I don’t know,” doesn’t work. Things like “I want to gain one new coping skill” or “I want to participate in the discussion once for each group” are much better. It gives us a metric to reach or not reach so that, at the end of the day, we can talk about whether or not we managed it and, if not, what we can do to change that in the future.
We have a ten minute break. I usually run out and use the bathroom and give the kids each a hug and a kiss (and Kyle, if I can reach him above all the kids).
The next two groups are also divided by a ten-minute break, but they’re more teaching groups, helping us to learn skills that will ease the burden of our mood disorders or addictions or whatever else we have going on when we’re not in group. These are a lot harder to break down into a simple paragraph of description because they run the gamut, everything from watching an Instagram model talk about stream of consciousness writing and putting it into practice to finding five sensory objects that we can focus on when our minds begin to spiral out of control to practical advice on when and how to talk about our mental illnesses with other people, including employers.
Oh, and Brene Brown. SO MUCH Brene Brown.
I like those groups a lot, especially the ones that offer practical advice and coping skills. It’s one thing to gain those theories of “vulnerability is courage and leads to fulfillment” and “shame is neutralized by the words ‘me too,’” and not that internalizing those messages (which it’s hard not to do when you’re being bombarded by them) isn’t helpful and useful, but having practical advice gives me something I can incorporate into my days and either cope MUCH better with the issues I have or else prevent them from getting as bad in the first place.
For example, one that we talk about SO MUCH is called the 5-4-3-2-1 technique, which I’d heard about before, but it comes up basically every other session at least twice. It’s a grounding technique you can use when you’re having a panic attack or dissociating or feel yourself spiraling out of control. You find and identify (by saying out loud) five things you can see, four things you can touch, three things you can hear, two things you can smell, and one thing you can taste. This gets you out of the panicky mindspace and helps to calm your body down by focusing your mind on concrete things rather than abstracts. I’ve learned to start keeping focusing objects around my desk for those inevitable times when I’ll start panicking or getting too in my head (Kyle is, for his part, not complaining that he’s smelling my perfume more often).
Another ten minute break (and time for me to take some of my meds), and then it’s our last group, check-out. The questions at check-out follow a similar pattern to those at check-in: did you accomplish what you set out to do today, what is one thing you learned today, what are your plans for tonight, etc. And each check-out ends with the question: are you safe at home? If you seem like you aren’t doing so great, the therapists offer to have someone call and check in with you at some point, and they make sure that everyone who wanted to speak with the psychiatric RNs or with their case manager has done so.
It doesn’t sound like it would be terribly helpful, but it is. It’s all so simple, but it’s what I–and, I think, all the people in the program–need. It breaks things down for us, gives us very simple and practical ways of looking at our mental health and caring for ourselves so that we don’t feel overwhelmed by the task.
That doesn’t mean we all do really well all of the time. I haven’t walked since Wednesday (in my defense, Thursday and today were rainy, but I have no excuse for Friday), and I had a really bad night last night (more on that in a minute). Mental health is more of a squiggly up and down line than a straight incline–your rough days and good days are going to be all over the place. But hopefully, soonish, the trend for me will be more up days than down ones.
Like I said earlier, part of the program is having a psychiatric RN available to help you adjust your medications as needed, and that’s where my bad night yesterday began.
It was so dumb, really. Yesterday was SUCH a nice day, and I was feeling really good going into the weekend. We didn’t have any concrete plans beyond D&D tonight (I’m skipping because I am just worn thin), but I thought it would be fun to try and get the kids out to a park somewhere tomorrow because it’s going to be really nice. Before doing that, though, I talked with my psychiatric RN about how increasing the dosage of my antidepressant was difficult because the first few days following that increase are always marked by me being really sleepy (or, as they call it in the medical world, “somnolence”).
“Why don’t you try taking your meds at night instead?” my RN suggested, and I was like
Obviously! If the meds make you sleepy, take them before you’re about to go and sleep! Problem solved! You’ll start getting really sleepy just in time to go to bed, and everything will be happy funtimes!
So here’s the thing about my antidepressant: it has a REALLY short half life, about 3-7 hours depending on your dosage and body and whatever. Miss your dose by too long and you’re in for a rough time because my antidepressant, an SNRI, has really bad discontinuation symptoms. We’re talking everything from the jitters to nausea to panic attacks to psychosis.
I’d experienced a lot of it before, once. I was on half the dosage I’m on now, and I’d forgotten to take my pill with breakfast (this was well before I started using a days of the week pillbox, an accessory that makes me feel like I need to subscribe to AARP magazine but also basically saves my life because depression destroys your memory). I didn’t realize that I’d forgotten for most of the day, and as the day came to a close, I developed a terrible headache, jitters, general agitation, and a very bad mood. I went to bed early, figuring that I could just sleep off whatever this was.
But no, that’s when things got WAY worse. Effexor, my antidepressant, already causes vivid dreams, which has been a lot of fun over the last ~6 years I’ve been on it (I can still tell you most of the details in the yellow house dream or the numerous “we’re going to Disney World but something is going terribly awry” dreams). When the drug isn’t in your body anymore, though, you start having really vivid night terrors.
When I say “night terrors,” I don’t mean dreams that were logically frightening–those, at least, I could have accepted as waking me up all night long. No, these dreams weren’t even that scary. They were otherwise completely normal dreams that just left me absolutely terrified and certain I was going to die in dreamland. It was around the third bad dream that I woke up in a cold sweat, put two and two together and realized, “Oh, shit. I forgot my meds yesterday.” The next night terror took this information into account and focused on me trying to get to the hospital to get my medication but constantly missing the subway stop, which, in this bizarre dreamworld, was the scariest thing imaginable.
When my RN told me to start taking my meds at night, I knew I’d be in for something of a rough time beforehand, but I figured that it wouldn’t be nearly as bad as the time before because I wouldn’t have to deal with it while sleeping. No night terrors, maybe a headache or some jitters, but I wasn’t missing a dose. I was just taking it later.
I mean, about eight hours later than I’d taken it the day before, but it would be fine, right?
Around the time Kyle and I put the kids to bed, it started. I felt so irritable. Furious scoldings of my children were in the back of my throat, but the withdrawal hadn’t completely kicked in, so I held them in with some deep breathing and visualization. I came downstairs, and the jitters began. I wasn’t shaking outside of my own control, but my arms and legs felt like they needed me to shake and flap them (“why, brain?” I wailed internally. “You gotta,” my brain, the asshole, replied). I tried to ignore it while eating ice cream, but as I took the last bite, a sense of absolute dread descended on me.
If you’ve ever had a panic attack, you know what this is like, but I think everyone has had that kind of fear at some point in their lives, even just as a kid. It’s beyond the usual fear of “haha that was a really scary movie, good thing zombies aren’t real, but I’m going to sleep with this baseball bat under my bed just in case.” It’s that sense that if something doesn’t change IMMEDIATELY, you are going to die, with all of your primal instincts to preserve your life kicking in. And that’s super cool and helpful if you’re a caveman and there’s a sabretooth tiger stalking you, but when you’re a 21st century mom who just wants to get to the kitchen to put away her ice cream bowl, it’s a little inconvenient.
I put the bowl back. I grabbed a bottle of water. I sat down. It was half an hour early, but I took my antidepressant anyway because I couldn’t stand it anymore. And I wish I could say that the relief was immediate, but medication that goes through your bloodstream has to actually get there first, so I had about an hour, maybe more, to wait until the medication kicked in.
By now, I was shaking like a leaf and couldn’t stop. I took my phone and my iPad out to the living room and flipped on the Weather Channel, not to pay attention (it was something about trucks and snow, I think?) but to have consistent noise. I tried to focus on every exercise I’ve learned to get through a panic attack, and they’d work for a couple of minutes before the panic set back in, because it was physiological not psychological. My brain wasn’t panicking because it was afraid; it was panicking because the medication that makes sure it gets enough serotonin and norepinephrine had vanished from my system, and the only fix for that was to get that medication back.
(psychiatric medications are a trip, let me tell you; this is why you have to taper off them instead of quitting cold turkey, and I 100% understand why it’s so hard to stop using illicit drugs)
Kyle eventually came out to the living room and sat with me and let me talk and talk until I could stop panicking, which was about an hour and a half after I took the meds. Even that was scary at first, because I couldn’t keep my train of thought, and half the time, I wasn’t 100% sure that I was saying words in a way that could be understood either. But the meds did kick in, slowly, and I came down from my panic, slowly. It still wasn’t a great night afterwards, and I felt exhausted this morning, but at least my lizard brain isn’t currently telling me that DOOM IS COMING anymore.
The exhaustion that carried over to today translated into me taking a nap this afternoon, since today was just. Gross. Super humid outside, rain all day (but not the pleasant kind, the kind that gives me a migraine), everything feeling like it was dragging through sludge. And then I was supposed to do D&D tonight, but five minutes in, I started panicking and cut out as quick as I could because I didn’t want to have another attack.
It’s like. Days where I have the PHP, I’m tired but okay. Days where I don’t, everything goes upside down and sideways. But on the plus side, I’ve been coloring a bunch of downloadable pages and that’s been fun. And it’s still just the end of week one, so who knows. Maybe at the end of next week, I’ll be. Saner? We’ll see.
The kids have this book they adore called “The Very Impatient Caterpillar.” As the title suggests, the book is about a caterpillar who has a difficult time coping with the fact that metamorphosis takes two weeks. He tries to rush the process, cries that he can’t last the entire two weeks, but in the end, he makes it and transforms into a butterfly… only to learn, to his dismay, that migration will take a long time, too.
It’s genuinely hilarious, and it gives us a good lesson to point to when any of the kids need to be a little more patient (after all, we do have to wait for things in this life, even if instant gratification takes too long). Carrie, in particular, has fallen in love with the voices I do for all of the characters and can recite the book without blinking, despite stumbling over a few of the larger words (“metamorphosize” is, after all, quite a mouthful for a girl of only two).
I’m writing this nervously because I know how easy it would be to take the wrong way and be used against me. I file it with other things that could be taken the wrong way and used against me: that time I didn’t teach any Friday classes when I was supposed to, my struggle with getting to the office on time, my list of “incomplete” graduate school classes, my constant panicked running after my student loans, my obnoxiously blossoming weight.
Today, I learned a thing or two about shame, about how it serves as the critic on your shoulder saying that you’re not good enough, and then saying who do you think you are? And, as it turns out, that critic is just your mind messing with you. That when you allow yourself to be vulnerable, you’re opening yourself up to failure, but you’re also throwing your voice out there to others who are going through the same struggle; your “me too” is the enemy of their shame and allows them to be vulnerable as well, to step into the light and see that the stupid critic on your shoulder is a liar.
So here’s where I am.
About a week, maybe two weeks ago, I found myself in a dark place again. I don’t know what precipitated it, except maybe the weight of everything I’ve been doing, from coordinating the kids’ therapy to trying to make the burden on Kyle as small as possible to my own health issues (more on that in a minute) just crashing down on me at once. I’ve been seeing a therapist once a week since May/June, but that Friday, I didn’t want to see her. I didn’t want to talk to anyone. I wanted to go upstairs to my big, comfortable bed, with the AC blasting on me, and just disappear.
(naturally, only while the twins were napping–after all, doing otherwise would leave Kyle with too much to do, and I don’t want to do that)
Some part of my brain, the part that’s still rational, pointed out that all of this meant I probably needed to talk to my therapist, so I did, and she pointed out that with me still in this dark place, still going back to it so easily, we needed to do something more–the recent increase in my medication and the recent therapy weren’t quite cutting it.
At her suggestion, I met with a psychiatric RN a few days later, and she took a look at my medications, but more importantly, she talked to Kyle. We don’t always notice when we’re drowning, and Kyle pointed out that I mask so much, even to myself, that it’s sometimes hard to tell; but he’d noticed that I wasn’t doing well. I was struggling to force myself to do things like take a shower. I was sleeping upwards of 14 hours a day and wanted to sleep more. I couldn’t engage with things that used to make me happy. Little problems seemed overwhelming.
My RN listened to all of this and suggested to me, and to my therapist, that it might be a good idea if I looked into an intensive outpatient program, also called a partial hospitalization program.
It sounds scary, right? Partial hospitalization. A step more and you’re hospitalized because you’re mentally ill, and that’s a scary thing. That’s something that only happens to people who’ve got it really bad or people who Los Angeles police in the 1930s need to silence or Kennedy daughters whose birth injuries cause them to be a little too scandalous for daddy’s liking or housewives who are more trouble to their husbands than they’re worth. It’s a black mark, a stain, something that can and will be used against you by people who’d rather you not live your best life. It’s a trump card that can be pulled whenever: “Well, I might not be able to tell you the five socioeconomic factors that led to the French Revolution, but at least I’ve never been partially hospitalized.”
And it’s really stupid that society and our own biases make us think that way, particularly about mental health issues. Someone who has to do 40 hours of chemotherapy isn’t looked down upon or seen as being a hot mess because they’re doing something to heal themselves. Someone who goes to physical therapy every day for two weeks doesn’t have that therapy used against them by assholes (well. Depends on the asshole). Someone who needs a team of doctors to help them solve a physical problem isn’t seen as being weak or having a black mark against them. Why should mental illness be any different?
The prejudices against mental illness and mentally ill people are really stupid when you think about it. I take medication to help my body become less insulin resistant and to make sure that my brain is getting enough serotonin to function correctly. The last time I had bronchitis, I was too sick to get out of bed for a week; this last depressive downswing, I wouldn’t have gotten out of bed at all if the kids didn’t need me. Yet my metformin and resting for my bronchitis are seen as necessary steps for my health, while my Effexor and resting for my depression are seen as weakness and laziness, respectively.
Which, really, is why I’ve been reluctant to write about this. I’m afraid that somewhere, down the road, someone will find this blog post and use it against me. But that said, I think odds are greater that someone, somewhere, is going through this just like I am, and they think that they’re alone, and they feel ashamed for letting it get this bad and ashamed for having this black mark on their record.
So, to you, whomever you are: you’re not alone. I signed up for the partial hospitalization program.
It looks very different, I think, from how anyone would expect. I’ve been calling it a “class” to people who don’t need details (like my kids’ therapists; their ABA therapist had the misfortune of overhearing my entire first meeting on Friday because my computer fritzed out right before I joined the Zoom call). About 15 people, all ages, all walks of life, get together every day on Zoom for four hours with 10 minute breaks between sessions. We talk about our struggles and coping mechanisms, and we have psychologists who work with us to learn better coping skills, to rewire our brains so that the world isn’t as heavy, to hopefully move towards wellness. We have a psychiatric RN who monitors our medications and checks in with us to see how the side effects are. We’ve watched several TED talks. We take notes. We compare situations. We work with and for each other.
It’s not a perfect situation, and today was only my second day in the program. Most of what I’ve been learning has been telling me where my issues originate, not how to fix those issues.
Which, like. It’s the second day.
And I’m journaling. I have a really cute journal that I decorated with stickers because it made me happy to do so.
I took a walk today, only for about 7 minutes because my ankles were screaming at me, but I did it. I took a shower this weekend, and my hair is clean. I ate an apple for breakfast.
I’m trying to make myself feel obligated to do these things so that I keep doing them, because I know they’re good for me. I know that they’re helping me, even if it’s not an overnight change. And I’m content being in this two week partial hospitalization program, because it’s like the impatient caterpillar’s chrysalis: it’s a safe place where I can deconstruct what’s brought me to this point and hopefully rearrange it into something more beautiful.
And then maybe I’ll migrate.
Physical health wise, things are… interesting. I’ve been having lower left pelvic pain for ages now, more than a year, and I don’t know what’s causing it (ER reports that it was constipation are strongly off the mark). I’m supposed to see my gynecologist next week to try and figure out what’s going on, and that might require some surgery (nothing major, just putting a camera inside of me to look around, because as it turns out, this level of pain isn’t normal). I’m not even sure that it’s a gynecological issue. It could be my gastrointestinal tract finally deciding that it’s through with cheese (please no). It could be my hips suffering after bearing the weight of twins for 34 weeks.
BUT the fact that it flares up most frequently around when I ovulate and around my period makes me think that no, it’s something gynecological, and I’m hoping something easily fixed. The last thing I need right now is to find out that I’ve got like. Cancer of the everything or something.
Anyway. That appointment is on September 1. After that, health-depending, it’ll be time to start Sam’s school year and push on until the insanity of 2020 finally goes away.
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.
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.
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.
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.
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 🙂
It’s been a Time, let me tell you. Two weeks since I last wrote, and everything is happening so much.
Drugs. I’m not talking the ones that you were warned against in the fifth grade (aside: when we had D.A.R.E., it was before there were any mascots or anything, and all we had was this… “music video,” if you can even call it that, of what we were supposed to believe were police officers singing, “Dare! For keeping kids off drugs!” and then this guy in the background would radically wail, “KIIIIIDS OFFFFF DRUUUUUGS,” and I will tell you that I do not remember anything about the program besides that specific snippet), but the ones that you get prescribed from your doctor.
When I went to my OB-GYN for my crisis of intrusive thoughts, he had me talk with a behavioral health specialist (which is the new name for a shrink), and said specialist both prescribed me counselling and called my primary care doctor to request an increase in my dosage of my current antidepressant, Effexor. I had been taking 75 mg (the lowest possible therapeutic dosage), so now I’m up to 112.5 mg, which means two little capsules every day instead of one. About a week after that, I had a psychiatric medication review with a nurse whose job is doing only that ever to see if I should continue with the Effexor or if I should switch to a different antidepressant and/or take something else as well. This was a lot like my therapy intake appointment, where you just go through alllll of your issues, realize how long they’ve been issues, and feel like somebody’s just peeled your emotional skin off for a minute.
Like. Normal therapy gets into these issues, but it’s a slower and more gradual process. Intake appointments get to the heart of things all at once. No slow, gentle “so what was it like during that one specific afternoon when you were eleven and those five boys in your class called you ‘ugly’ while you waited for the school bus?” but more of an “OKAY SO YOU’VE EXPERIENCED INTRUSIVE THOUGHTS SINCE YOU WERE ELEVEN AND HAVE HAD SUICIDAL THOUGHTS SINCE YOU WERE A TEENAGER, SOUNDS LIKE CHRONIC SUICIDAL IDEATION, NEXT TOPIC.”
Anyway, the nurse (who was excellent; very to-the-point, and also very practical) ended up prescribing me a sleep aid called Trazodone to theoretically cut down on my bedtime insomnia from 2ish hours to 0ish hours, and I’ve been on that for about a week. I want to say that it’s working (especially in conjunction with Kyle and my decision to start taking melatonin at bedtime every night in very tasty cherry gummy form), but I honestly don’t know. I’m forcing myself to be more well-rested, by which I mean that I’m refusing to take afternoon naps even when circumstances would allow me to (read: no appointments for anyone, either virtual or physical), but I can’t tell if anything is working well because Sam’s in an anxious streak and has woken us up one way or another basically every night for a couple of weeks now.
(more on that in a minute)
So that’ll be fun to talk to my therapist about. Meanwhile, I’ve also had an appointment with an endocrinologist (not a reproductive endocrinologist, because while I’m 100% for snagging one more girl out of our freezies, we need to pay the $3500 to have them tested and have Kyle actually employed before we strike on down that path) to try and start getting my PCOS better under control. Last October, I spent a day in the ER with agonizing pain in my lower left abdomen, which the ER diagnosed as constipation (even though, and this is TMI, I was and am regular for basically the first time in my entire life) but which my OB-GYN figured was probably related to my PCOS. We went down a path there of trying progesterone-only hormonal birth control (review: too much breakthrough bleeding, too much depression, nowhere near enough pain reduction) because I’m prone to migraine with aura, which makes me a poor candidate for estrogen usage; and I got a referral to the endocrinologist to see if we could make my hormones start behaving.
That appointment was supposed to happen in either February or March, but either I was sick as hell or it was during the Great Cancellation Of Things, so the appointment proper didn’t happen until this month. After we talked about my symptoms (I am quite fat, I have wonky periods, I am very hairy, acne is my constant companion, getting pregnant was a pain in the ass, and my ovaries have the distinct “string of pearls” cysts on them), my endocrinologist ordered about six sprillion blood tests to check how my hormones were doing overall. Everything is consistent with PCOS (absurdly high testosterone, which I wish I could donate to some trans men out there, and hallmarks of insulin resistance though not diabetes), so she’s starting me on metformin (500mg to start, gradually increasing to 2000mg/day) to combat the insulin resistance, and I’m adding that to my daily regimen.
Basically, I’ve reached a point in my life where everything is measured in various pills; and that’s not even counting my migraine meds (because I only really take those when I manage to catch a migraine starting). And honestly, I don’t mind it much. There’s some faux wisdom about blah blah blah, being medicated is bad, makes you conform, something something 5G Bill Gates QAnon bullshit (or, on the other side of things, “all you need is fresh air and a positive outlook, plus maybe some crystals and essential oils!” Or both. Silliness has no boundary), but it’s like. Maybe I like not feeling like garbage. Maybe I like it when I’m able to spend an afternoon writing a blog instead of sleeping. Maybe I want to treat my body’s hormonal wackiness. Maybe I want to have the ability to feel genuinely happy, because depression has stolen that from me, and if I need medication to get that back, I will literally take all the pills.
Like not to feel happy all the time. That isn’t how things work. I just want to be able to look at the days and weeks to come and not feel like I’m drowning.
Dads. This weekend was both Father’s Day on Sunday and Kyle’s birthday on Monday. I’ve spent a decent amount of time, therefore, baking and also organizing gifts and cards and the like.
The baking was the fun part. I love baking; it’s one of those things that, if you know a few tricks and are very precise with what you do, people will love you for it. Kyle’s cake, catering to the things he adores in a dessert, was a red velvet layer cake with a s’mores filling (marshmallow fluff mixed with crushed graham crackers and mini chocolate chips) and decorated with rich chocolate buttercream, marshmallows, graham crackers, and candy bars. I don’t like to say that I’ve outdone myself when I bake something, but this time, I absolutely outdid myself.
I also outdid myself showering Kyle with multitudinous gifts, each designed to remind him of one of his kids when he used it. From Sammy, he got the game of Sorry, because we pretty much just play board games with Sammy (Sorry is… not anyone’s favorite right now because it’s really frustrating independent of anyone taking revenge on anyone else, and we’re all learning valuable lessons about not trying to stack the deck, because the game Knows). From Isaac, he got what’s called a dice tower; it’s basically a better way of rolling dice that resembles a marble game…
…and makes satisfying “click clack” noises as the colorful math rocks descend. Isaac loves putting things in things, especially if that act creates a Noise, so the idea of him giving a dice tower was just irresistible. And from Carrie, Kyle received some of those colorful math rocks, specifically a dice set with pink and purple butterflies because that’s just who she is. Sparkles, pink and purple, butterflies, rainbows… that may change in the coming years, but for now, she’s my girly girl.
Lockdown has been easing in a good way here in Massachusetts–at least out in our neck of the woods, people have remained compliant with mask orders, so some things are somewhat back to normal, and we’ve felt comfortable enough the past couple of weekends to go and visit my parents at their house (even though our house is now visitable with its delightful couches, we wanted the twins to get some time at their grandparents’ house, since they haven’t had much time there at all). We went there for Father’s Day on Sunday and enjoyed some takeout from Outback Steakhouse and some good visiting. My dad and Kyle both got cards signed by all three kids (some more legibly than others), and I got my dad a book of Dad Jokes, because he is the absolute master of them.
So it was a good weekend with a lot of normalcy, and that was really good for my mental state. Yesterday, for the first time in I don’t even know how long, I felt wide awake without having to go and take a nap when the twins did (I try not to nap when the twins do, but usually when that happens, I end up so tired throughout the afternoon that I can’t function; that I’ve been able to go several days without feeling like I need a nap–today excluded for being a migraine day–has been really nice). I also managed to go out and run some errands like the world was back to something resembling normalcy and not just. Chaotic.
Problems have even started being more normal, too, specifically where Sam is concerned. He’s had a loose tooth for several months, as you do when you are five, and it got really loose the other day, probably earlier than it should have. I guess he bit down too hard on a piece of bacon, and that pulled his tooth away from the gum and, apparently, exposed a nerve. The dentist told us there’s nothing for it except to give him Tylenol or Motrin and Orajel, because pulling it before it’s ready would cause more problems than it would solve.
The trouble is that this small adventure has caused a lot of anxiety for Sam. He’s understandably wary about eating now, because his tooth hurts–last night, despite us having his favorite noodles for dinner, he sobbed hysterically and refused to eat them because he was afraid. And then tonight, he sneaked down to snuggle with me when he was supposed to be in bed and told me, “I know I’m supposed to be happy about my loose tooth, but it hurts so much, and I’m really kind of mad at that bacon.”
I told him that the only way he’s supposed to feel is how he does feel–that it’s alright and even makes sense for him to be angry about this happening, because losing your first tooth should be exciting, fun, and painless, not scary and painful.
And then he wanted to talk about spiders, because he’s six.
His pediatrician recommended us to a therapist to try and help him cope with anxiety better–I think his is worse than it should be because he’s got parents who are prone to anxiety, so there’s that natural tendency to pick up on it, and since the two of us are only just learning healthy coping skills, it’s hard for us to teach him. With any luck, speaking with a therapist will give him tools to use now so that he can grow up and have a handle on this instead of growing up like we Millennials do.
So we’ll see where it all goes. But hopefully, it’ll go good places. Until then…
Hey, guess what, here’s a TRIGGER WARNING, because I’m going to talk about my depression, and it’s going to be raw and real, so if you have a hard time reading about suicidal ideation or depressive psychosis, please click the little X on your tab. Please also click the little X on your tab if you’re the type of person to make “lol triggered” jokes because fuck you.
Right, so anyway.
I know I’ve talked about depression a lot, but not in a while, because for a really long time, I was doing really well. My meds (Effexor, specifically) were doing their job, I was feeling pretty good about life, even my hormones weren’t stopping me from being healthy. Ish. I still don’t have the high levels of serotonin required to make a cutesy Zoom video (and, in fact, the handful of video collabs I’ve been invited to participate in since quarantine started have whooshed right by me, for which I sorely apologize), and my energy levels have stayed steadily somewhere around “engages kids in play but only if it doesn’t require a lot of frolicking on my part.” I’d been mercifully free from downswings for years, even in the postpartum times, and I’ve been feeling genuinely optimistic, despite the world being a dumpster fire in a lot of ways.
And then 2020 happened.
I felt the first hints of a downswing in January, when the president decided that starting World War III over Twitter was a great idea. It wasn’t anything severe at the time, more of a few nights panicking while trying to fall asleep and thinking, “Really. Fucking really. I cannot emphasize enough how little I and everyone else in existence want this, and yet it is happening, and it might result in massive casualties on all sides and nuclear winter. Yayyyyy.”
But it passed.
And I might’ve gotten through the year without a downswing, despite everything. The nonstop rush of everything happening so much that’s the modern newscycle has actually been good training for me at getting righteously angry while also being able to distance myself when I need a mental health break. We donated to help Australia recover from its wildfires, I spent most of the winter in bed because of bronchitis or norovirus, and once I’d recovered, I went into Sammy’s class twice to read him books. When I wasn’t sick, I went to the twins’ playgroup every week, and as exhausting as it was, it was good for me, because it was getting out of the house and doing a thing.
But then Covid-19 came.
And I hate talking about it as a catalyst for my depression getting worse, because it’s not like I’ve really suffered all that much from it. I have a dear college friend who’s an ICU nurse, and the fact that she’s not just rolling over into a ball of nope every day astounds me. I know people who’ve gotten sick themselves or lost friends and family members. By comparison with all of the above, I should be fine: I’m just homebound. That’s all.
But depression doesn’t work that way. Instead, it sees patterns and recognizes those patterns as itself. For me, the pattern that pushes me into a downswing is monotony. If there’s little to no change in my day-to-day life, it gets hard for my brain to produce serotonin, no matter what good things are happening, like birthdays and new couches and D&D on the weekends. And I knew the second the Commonwealth started locking down that things were going to get ugly. I hoped that maybe, just maybe, the fact that I’m still on my antidepressant might keep things from getting too ugly, that maybe I might be able to come out of this with the lack of depression that makes sense for someone who’s not really suffering from the situation, just bearing emotional weight for the people around her.
I pushed through it as much as I could. I put off talking to someone as long as I could. What were they going to do, give me medication? Tell me that I could start therapy as soon as things were over? I didn’t leave the house because I’m prone to illness induced asthma and got bronchitis just a few months ago. My days fell into the same routine, even once Isaac’s ABA started and we had people coming into the house. The added pressure of keeping up with the twins’ Zoom call therapies didn’t help things at all, especially when I kept missing therapy sessions because I lost track of who was meeting when. Our poor services coordinator texts me at least once a week asking, “Are you still able to meet today?” when I’m 10 minutes late for our Zoom meeting because of basically no reason.
I got through half of March. April passed by. We had Easter. We stayed in our routine. We were good. We didn’t leave the house to do anything but get groceries once a week. We washed our hands all the time. We made Isaac’s ABA therapists wash their hands the second they came into the house. We wore masks. Kyle worked twelve hour days, seven days a week, to keep up with a new project his old company was doing to help with Covid.
And then, on April 30, he was laid off.
Maybe that was the catalyst for the spiral; or maybe it’s that March, April, May, and June are usually my busiest months, spent obsessively organizing birthdays and anniversaries and holidays, and this year, I’m basically just sitting on my butt, doing nothing. I don’t really know.
I just know that one night, I was sitting on my new couch, watching my kids play, and suddenly, it was like a little gremlin in the back of my head, saying, “Isn’t it a shame that you can’t want to die because of your kids?”
I should’ve seen it coming, probably. All of my previous hobbies have gotten kind of lackluster to me. I can’t disappear into writing anything anymore. None of my video games are fun anymore. I can’t make myself get up and read a book anymore. Even looking around at the mess in my house that needs cleaning makes me feel frustrated and empty, like why even bother when we can’t get it done while the kids are here anyway?
But there it was, that first intrusive thought, something I haven’t had since I started Effexor. More followed, usually late at night when I was trying to fall asleep. They really were like little gremlins sitting in the back of my head, saying things I didn’t like. “You know,” they said one night, “if you told Kyle you were going to take a nap, you could sneak up here and do it in a way you can’t sneak away any other time.”
And the rest of my brain was screaming, “But I don’t want to die!”
Another time: “Let’s google ways of doing it painlessly, because pain isn’t fun.”
And the rest of my brain was screaming, “Dying in general isn’t fun either!”
I’m not a self-sacrificing idiot. I did some googling, not of painless ways to die, but rather of potential side effects of all the medications I’m taking. My birth control pill had listed under its name, “Contact your doctor if you experience new or worsening depression,” so that was the first step I took, calling my OB-GYN and saying, “hey, I don’t know if this is because of the progesterone or anything, but…”
And in a heartbeat, although Covid still mattered, it didn’t matter. Immediately, my doctor set up appointments for me to come in and see him. At the same time, he set up an emergency triage with the mental health department, which made the appointments kind of weird: I sat in his office having a pelvic exam, PAP smear, endometrial biopsy, and polyp removal (owwww), and then I went into another room and had a phone call with someone from behavioral health to make sure I wasn’t in any immediate danger.
And I wasn’t, because the gremlins aren’t terribly convincing, but they’re still present, so the mental health provider set me up with one of her colleagues, and we spoke on Friday.
The first appointment with any new doctor is an adventure, because you have to go through your medical history with a stranger and talk about how you’ve only ever smoked tobacco once and it was a pipe in college and it was terrible, and how having three kids and taking progesterone to help with PCOS means that your sex life is a craps shoot as to whether or not it exists and so on.
The first appointment with a therapist, though, is basically an emotional debridement. You don’t just talk about your physical health and history, oh no. You have to go through the history of your mental health, which means delicately going into your background and realizing, as you talk things through, that maybe you haven’t been as okay all along as you previously thought. Like for example, your therapist asks, “How long have you had intrusive thoughts like these?” and you start to answer that it’s just been in the last couple of years, but no wait, you remember them in college, and no, they went back farther than that, and suddenly, you realize that you were having intrusive thoughts as a kid, and you were so scared of them because you grew up in a church that preached demonic possession and didn’t want your parents to think that you were possessed, so you kept it all to yourself.
“What were they like as a kid?” the therapist asks, and at first you think you don’t remember, but then you do remember the thought of wouldn’t it be nice to get hit by a car or be sick in the hospital so that everyone would feel sorry for you. “What a weird thought!” you say laughingly, and the therapist says, “It sounds like you subconsciously wanted to ask for help but didn’t know how.”
So you have to absorb that while also chatting about yes, things were better for a long time after you started meds, but now they inexplicably are not better anymore.
It’s a lot. And as you’re raw from letting this all sink in, the therapist remarks, “I think you’ve got severe depression and depressive psychosis, and also your meds don’t seem to be cutting it anymore. I’m ordering a medication review with your PCP and one of our prescribing RNs to see if we can’t find something that will work better for you. And you and I are going to talk again next week. In the meantime, here are some crisis numbers. Please make sure you’ve got them on hand and make sure your husband has them in case there’s ever an emergency.”
And you’re like, oh, I guess it’s worse than I thought.
I’ve got a lot to unpack over the coming weeks and months, on a lot of levels–judging by that, more than I probably realize. Having therapy to look forward to is helping in the short term, but in the long term… I don’t know. I just want to feel hopeful again, you know?
Anyway. I didn’t write any of this as a ploy for sympathy or to try and divert attention from infinitely more important causes (and if we’re friends on Facebook, you know where my mind’s been this past week), but just because I want to be honest on this blog, as I always have wanted, and that means sometimes telling some hard stories. So there you go.