There’s something to be said for normalcy in one’s life.
I don’t push myself or my kids to conform to society’s ideas of normality, mind. I’m gloriously weird, my kids are gloriously weird, our family life doesn’t reflect what a lot of people would consider “normal,” but all of that said, we have our own beat of normal that we’ve been missing for a long time. It was missing for a variety of reasons–summer vacation, Covid, Kyle being out of work–but at long last, I can say with some confidence that it’s starting to come back.
For one thing, all three kids are in school now, finally. The twins started back in the spring, because they aged out of early intervention services, so it was less of a huge transition for them. Other kids in their preK class started the school year with tears and clinginess, but the twins just marched right on down to their classroom like they owned the place. Even in the spring, school was just so good for them overall. Carrie went from babbling a lot to actually using words more often than not (which we expected of her–she loves to use words and speak in complete sentences when she knows how, and school helped her refocus those abilities somewhat), and Isaac has done the same (which is huge for him–he actually answers questions without being fed options now, and that’s amazing) (and an addendum: if he just didn’t want to communicate verbally or if he wasn’t comfortable doing so, I wouldn’t push it on him, but he’s made it more than apparent that he LOVES to talk with us and communicate verbally, so I’m happy to encourage it). They’ve made friends and are comfortable with the routine they have at school, and I love to see it. They’re also so much calmer when their days are in this kind of routine, which I love to see for other reasons (like my own sanity).
And Sam started back at school, which is fantastic. Yes, Covid is still raging, but our schools have fantastic protocols in place, and after the stress of last year and knowing that Sam has ADHD and is likely autistic as well, I wanted him to be in a place where he could receive the accommodations he needs rather than struggling with me at home. His friends are all in school, and that has been huge for him–he’s not alone anymore, and I can see just from that how much happier he is. And that alone does my heart a world of good.
He’s receiving special ed services this year, too (which means I have three IEPs to keep track of, and as any parent of a special ed student can tell you, that is basically a full time job except you don’t get dollars for it), and that’s been great. His accommodations aren’t super complex, like he doesn’t require a constant aide at his side or anything, but he does have accommodations: he gets to work with a special ed instructor every day of the week and on his English/Language Arts lessons, and he’s got the special ed instructor around daily to make sure that he’s doing well. His teacher is also aware of his accommodations and will let him step out into the special ed classroom if he’s getting too overwhelmed by things, which will be good for keeping him from melting down in class.
I love his school’s philosophy on so many things. Their view of writing is that kids should be able to write about whatever they want in order to develop their writing skills and narrative voice, which I hope helps Sam as much during the school year as it helped him over the summer (when he would write five chapter long stories about the cardboard spaceship he built, and those stories were and are wonderful). They’re sensitive to each kid’s needs, and while that shouldn’t be a “wow this makes them stand apart from the crowd” thing, it kind of is, and I’m glad they’re standing apart from the crowd like this instead of in a bad way.
So the kids are back in school, and that routine is getting back to something like normal. It means that mornings are just me and Kyle, which hasn’t been the case since 2013, and that’s pretty wonderful in and of itself. The house is quiet except for the sound of both of us typing and someone quietly talking about the weather on TV, and maybe Kyle on a work call…
…which, oh yes. Kyle got a job.
It’s a fun sort of story. He’d interviewed with this company last year at the suggestion of one of his old managers who currently works there. They didn’t have a position for him then, but they promised to keep him in mind if anything else came up. Nothing did in the fall, and Kyle started his most recent job then only to be laid off in June. And it was the whole song and dance of applying to companies, having companies say, “mmm, thanks but no thanks” (anyone who’s looked for a job in the last decade or so, and especially the last two years, can attest to that particular Broadway number) for a couple of months, and then he called this company back. And wouldn’t you know, they had a position for him.
It’s a good position. Without getting into details, it’s an incredibly comfortable salary and benefits situation, and they sweetened the deal in all sorts of ways that are really blowing my mind. So far, Kyle is loving the people he works with and the company’s philosophy as well, and I really REALLY hope this good fortune settles in and sticks with us a while. We just have to get through the next five-ish days before his first paycheck comes in and then we should finally, FINALLY be okay in the longer term.
Having him working again is really nice. It just gives us a schedule during the week, real weekends instead of every day blurring together into an endless hellscape. It feels like life is just… life and not life with an asterisk about it being weird.
Things just seem to go in cycles, patterns repeat themselves, and then you end up looking at your situation and asking, “…wait, didn’t we JUST do this?” which is annoying because nobody wants to keep doing stuff over and over again AND YET.
Long and short, Kyle got laid off on Friday.
It sucks. There’s no other way to say it. We weren’t super comfortable lately (various unexpected expenses keep popping up and, as per usual, they end up costing roughly $500), but we were managing. I was thinking about getting a job in the fall after recovering from my spine surgery, just to give us a little more wiggle room for Things. And we were managing.
And then Kyle got laid off.
It wasn’t his performance. It wasn’t tight budgets. It wasn’t a CEO throwing their weight around. It was a managerial decision that made a lot of sense, which is even more annoying because there’s nowhere to throw any misplaced frustration except space, I guess. Space and capitalism. But more the latter than the former.
Friday was all about getting ducks in a row: Kyle signed up for unemployment and signed the two of us up for state healthcare (which, in our state, is really good). I called the hospital and rescheduled my spine surgery to make sure that our health insurance will be updated before I go in (because while any insurance we’d have would be retroactive to the first of the month–when insurance should kick in–I don’t want to wrestle with billing departments over a $40k surgery). We both sat down and cried. We both went on all the sites to see how the job market is looking in Kyle’s sector.
And on the upside, it’s a decent enough market. Lots of jobs for his title, a lot of them with remote options. Lots paying decent money. And in the meantime, we have families willing to help us out as much as we need. This will hopefully be a short season, and it’ll be a season where Kyle gets to spend a lot of time with the kids and with his family, whom we haven’t seen in two years (thanks, pandemic), and then take care of me/them after my surgery in August.
But I wish it weren’t going to be a season at all. It’s that Lord of the Rings feeling, where you wish the ring hadn’t come to you and that you weren’t living through these times. Sure, you can decide what to do with the time you’re given, but that doesn’t make it feel any better to see Gandalf fall down to the middle of Middle Earth or to have the damn ring around your neck try to turn you evil every second of every day of your life. I think both of us are happy to make the best of the 24 hours we’re given in this shitty ass season, but I’d really prefer to be in a better season.
Like maybe one where we’re financially comfortable, where the world is an objectively good place that isn’t constantly heating up, where I can feel optimistic about the future for more than 15 minutes at a time.
But instead, we just sing this verse again, and really, I’d just rather move onto the next.
Have you ever had a month where everything happened so much and you didn’t have any time to really process one thing before the next was happening because that was May in our house.
It happens roughly this way every year. From the twins’ birthday in March to the Fourth of July, I’m basically running around like a chicken with my head cut off–baking cakes, wrapping presents, organizing mini parties (because aside from the twins’ first birthday, they haven’t really been in a place to have a real party). Even in typical years, May is the heaviest chunk of this insanity, with Sam’s birthday, Mother’s Day, and Kyle and my anniversary squeezing into the mix.
But this year is not a typical year, and unlike last year, this does NOT mean that things got quicker and easier.
The first chunk of the month was sort of easy. It was mostly just organizing for Sam’s birthday, his seventh birthday, which feels like a monumental year. We’d hoped that by this time, he’d have been back in school and able to have a birthday party–a real party–but 2020’s claws aren’t fully extracted, so we had to make smaller plans, plans that involved a Minecraft cake (of which I am VERY proud), a trip to the Museum of Science, and trick birthday candles.
And admittedly, that’s a far cry better than last year. Last year, I scrambled to pull something slightly special together, and it was all taking place roughly in and around our house. This year, we could at least go somewhere and do something. We could go visit my parents, which we’d BARELY started doing last year. And that made a HUGE difference.
He’s a happy seven-year-old, missing one of his front teeth, obsessed with Pokemon and Beyblade and Minecraft and science. Bouncing around the house at 9000 miles an hour when he gets excited and then flopping down on the couch talking about how exhausted he is. Begging us to have a Beyblade battle with him literally every second of every day or, failing that, to play Pokemon with him (this currently involves him telling us what to say about our Pokemon and us saying it).
He is also, it’s turning out, not a neurotypical kid. This isn’t surprising in the least, but all of the testing that Sam has had over the last several months in preparation for him returning to public school in the fall has kind of confirmed what those of us close to him have suspected for a while. At the very least, he falls pretty solidly on the “yes” side of the ADHD scale (as in “yes this kid has ADHD”), and everyone who’s evaluated him is pretty solidly convinced that he’s autistic as well, which is giving me a lot of emotions.
On the one hand, I’m thrilled. I’m autistic. Isaac is autistic. We’re a neurodiverse family, and that’s how it’s been from the beginning. It means that on some level, Sam’s brain and my brain work the same way, and that is just SUCH a relief as a mom, knowing that your brain and your kid’s brain are on the same wavelength. It makes sort of “hacking” those wavelengths a little easier, because even though the same things that worked for you almost certainly will not work for your kid, you at least have a common starting ground, and that’s an amazing feeling. Instead of watching your kid melt down and not knowing what to do about it, you can recognize “okay, the TV is too loud, he’s hungry and tired, and his blanket needs to be washed so it’s less scratchy.” And you can even find ways to motivate schoolwork, if you’re an A+ student (which I am. Sometimes.).
But on the other hand, I’m frustrated at the narrowness of diagnostic criteria for younger kids. When Sam was much younger, everyone who met him said that he couldn’t possibly be autistic. He forced eye contact with everyone, literally took people’s faces in his hands and made them look at him. He’s always been a little comic and so talkative. In daycare and even up through kindergarten, he’s always been a social butterfly who makes so many friends. He’s beyond clever and, to my great envy, has none of the social signs that people look for when diagnosing autism… so he went completely undiagnosed despite the ways he melts down during times of transition and despite his sensory issues with food and despite how he shuts down when something seems too hard for him.
ADHD and autism look really similar sometimes.
I’m a little relieved that he didn’t get diagnosed earlier because it spared us a lot of stress with therapies that might not have benefitted him in the long run, but I’m also annoyed because now, we have to go through the whole referral process, which can take up to 18 months (I’ve filled out paperwork for a place that could theoretically offer him an appointment in July–more on that being a silly idea coming up later–but they haven’t gotten back to me since I sent it). He has an IEP now, but it’s there without the legal protections in place because he doesn’t have that diagnosis, and that frustrates me.
So it’s a whole thing. I still have more paperwork to fill out for him to get back to school in the fall, and it’s a lot. But having these pieces to the puzzle has really helped.
Sam turned 7. We set up his IEP. I went to the eye doctor for the first time in eight years (ah, American health insurance). And then, since Kyle and I are both fully vaccinated and it has been a YEAR, we hopped on a plane and flew down to Florida for our tenth wedding anniversary.
We went to Disney for our honeymoon, and I can go on a whole rant about how awful a lot of their business practices are, but I also tend to light up like Christmas at the idea of being there, and after this trip, Kyle does as well. It was just the two of us, no kids or anyone else. We went at our own pace–made lightsabers on the first morning, ate around the world at Epcot the second day (I love Epcot festivals, they are magical), drove down to Miami-ish to spend time with my bestie Sherrie on the third day.
There was no real pressure. We did what we wanted to do when we wanted to do it. No worries about someone getting too tired or not wanting to eat the food at a certain restaurant. No rushing to make this Fast Pass time or that restaurant reservation. Lots of crowds, to be sure, but without the stress we’ve gotten used to on these trips.
And it was just. Nice. Nice and earned. We’d been burning out pretty quickly, thanks in large part to my sciatica having us running on empty since November, and while this didn’t refill our tanks by any stretch of the imagination, it was VERY nice to be able to just be with each other, relaxing and having a good time. Kyle enjoyed himself so much that he actually took pictures (I’m the one with the camera most of the time) and has been talking about what we’ll do the next time we’re there, and I’m just happy. Very happy to have had that time with him.
And now we’re back and 30 days out from my spine surgery. I’d be lying if I said I wasn’t genuinely really nervous about the surgery. It’s not a complicated procedure like a fusion or fixing scoliosis; it’s just removing the herniated disc material and letting my sciatic nerve heal some, but because of my weight (let me tell you, a pandemic and a spinal injury are really not good when you’re trying to get healthier), there’s a possibility they won’t be able to reach my spine. And there’s always a possibility that it won’t work, that I’ll just leave the hospital in more pain than I had when I went in, and that scares me.
The recovery period scares me, too. Basically from July 1 through October 1, I won’t be on my A-game, which is annoying because so much is happening in that timeframe that I need to be present for: Sam starting school again, the twins starting school in the fall, Halloween prep, picture day… it’s all stuff that I love doing about parenting, and it’s all stuff I’m either going to have to be very lazy about or else entrust to somebody else, which I HATE doing because delegating is scary because what if it’s not exactly the way I would’ve done it but HNNNGH.
I need this. I desperately need this surgery and the recovery time, but I am stressing so much about getting through the recovery. Kyle suggested (per his therapist) that I focus on something after the surgery that we’ve got planned (which is nothing right now because I’m not sure if any of our usual fall activities are even happening this year–I think they are, but who knows?), and I agree with that, but it’s so hard to make my brain see past the recovery all the way to what comes after when so much comes in between.
I started writing this a couple of weeks ago because I was feeling ranty, and I don’t even remember what I wanted to rant about (C-sections and autism, I think? Tl;dr – my C-section was amazing and I would do it again, Autism $peaks sucks, and autistic people like myself and my kiddos need acceptance, not just awareness, the end). And now, I’m looking at it like (a) I’m not in a ranty mood anymore, so I’m not going to rant; (b) my blog is WAY too depressing, WAY too often; and (c) what if I want to talk about good stuff?
So you’re not getting a rant today. Sorry!
Instead, you’re getting me cheerfully updating you on my life, why I’m feeling optimistic, and what’s up next!
BIG OPTIMISTIC POINT #1: SHOTS!
My name is Abby, and I am FULLY VACCINATED AGAINST COVID-19!
Obviously, all sorts of crazy things could still happen. The world is still in some measure of chaos, and who knows what variants might come from Brazil or New York or something. I sincerely doubt anything will mutate so much that we’ll be back where we were in 2020, but anything is possible.
BUT for now, I am 90-someodd percent protected from getting infected. And oh, my god, it feels so GOOD. And even better, almost my entire family that can be vaccinated is very close to the same boat! My dad got fully vaccinated around the time I did (I qualified earlyish because of my asthma and obesity, he qualified earlyish because of his old) (ha ha), and my mom and Kyle both have one shot under their belts. My sister is up next once I find her an appointment next week (I’m the family’s designated “vaccine finder”), and I keep hearing from people I love that they’ve finished their second shot, that they’re fully vaccinated.
And I know that *technically* we’re not supposed to jump right into everyone hanging out again, but GOSH, I just really want to go and give my aunties and uncles and cousins very tight hugs because I haven’t seen them in forever. And I can’t wait to see people in person after canceling playdates and get togethers all last year. Two of my cousins had babies in the last year and I haven’t even showered them with gifts like they’ve done for my babies yet! And we’re all so close to being vaccinated, and I’m just like AUGH please please PLEASE let us be able to get together for the Fourth of July, that would be amazing.
(granted, I will probably be on copious amounts of painkillers–more on that later–but I wouldn’t miss it for the world)
My favorite, favorite, FAVORITE shots moment came really early on when my friend who’s an ICU nurse got her shots. She’s been really heavily on the frontline this entire time and has been so strong and brave (which, I remind everyone reading this, doesn’t mean she hasn’t been afraid or had moments of weakness, but that she accepted those facts and continued to be the amazing, compassionate nurse she is anyway), and knowing that she isn’t going to get Covid was just like…
(I don’t even have words for it, so just picture me squealing with delight and bouncing)
The pandemic is far from over. There’s still a non-zero chance that my kids will get sick, and that makes me very nervous, BUT the risk is decreasing pretty steadily. Shoot, look at death count graphs lately, and you see a very sharp drop-off starting about two weeks ago, at least in states where the most at-risk got vaccinated first. These vaccines work. When I got my second shot, I teared up a little bit, not because it hurt, but because it feels like a genuine real time miracle: the world got together to fight back against a collective horror and we’re going to win. It is amazing what human beings can do when we stand united.
And related to me getting my shots…
BIG OPTIMISTIC POINT #2: PLANS!
I have plans.
Maybe it’s just how my autistic brain functions, I don’t know, but I am at my absolute best mood-wise when I have plans. I love looking at the future and being like “oh awesome, something to look forward to.” And honestly, the pandemic rained on that particular sort of parade a lot, because you just couldn’t plan for anything. Inevitably, things would close or get cancelled, and you’d be stuck at home, thinking too much about Tiger King or something (seriously, how was Tiger King a whole-ass year ago?).
But I’m vaccinated, Kyle will be fully vaccinated as of May 6, and we’ve got plans.
Plan number one is our anniversary. We’ve been married for ten years as of May 22, and I was feeling mildly sulky about it not being as big of a deal as it could have been because of Covid, but then vaccines actually worked and I was like, no, you know what? This is a big deal. We’ve been through a lot together, some really difficult years, but what we haven’t been is on a real actual date without the kids in more than a year.
So we’re going on a BIg Date, by which I mean we’re flying to Florida for a weekend.
It’s a risk, but it’s a calculated one. We’ve been reading every article that’s come out about Covid, variants, and vaccines for ages. We’re not data scientists, but we’re human, and while we’re not crazy about the idea of being in a plane with recycled air for three hours, we’re also vaccinated. So we booked a first class flight (anniversary trip, plus it ensured we wouldn’t have to sit next to anyone who didn’t share a house with us, AND it meant that we could be in the absolute front row with nobody’s air coming back at us), we rented a car, we made the plans. Of course, we’re hitting Disney. Of course, we’re getting our toes wet on a beach. Of course, we’re still going to the Melting Pot.
And I feel beyond excited and also a little stunned, like is this really a thing that’s happening? I half expect everything to get cancelled again, and it may very well do just that.
But oh, to TRAVEL again. The thrill of going places, of using tickets, of the smell of stale coffee and exhaust, of announcements over a PA and the knowledge that something exciting is happening, I’m just over the moon about even being in an AIRPORT again.
And then we get back, and life is going to continue! I’m getting new glasses! I’m prepping Sam to go back to school in the fall!
I’m having surgery!
BIG OPTIMISTIC POINT #3: BACKS!
Remember back at Thanksgiving, when I had such agonizing sciatica pain that I went to the ER and they were like ‘mm, that’s nice’ and gave me a nerve blocker and a lot of painkillers and promised they’d follow up but very little came of that because everything is 6000 times slower because of Covid so I’ve been gradually feeling more pain ever since and panicking about the idea of it getting WAY worse and me basically having to shit in diapers all the time?
(my brain is a fun place)
So despite Covid delays, I did get to see an orthopedist in January, and he recommended that I go get an MRI. The MRI was its own fun thing because they were already booking a month out, but then Kyle’s company switched insurances at the beginning of March (and my appointment was initially on March 5, I think?), so they had to cancel the appointment, get approval from my new insurance, and rebook the appointment.
The new insurance said they wouldn’t cover the MRI because I hadn’t met my deductible yet, so the office just. Didn’t rebook it. And blah blah blah, I basically had to call them and say I’d pay out of pocket for it, which, long story short, is part of where our Biden bucks went (more on those later). So my MRI, which was supposed to be at the very beginning of March ended up happening at the very end of March. And it was a fine experience. I got there before sunrise, lay perfectly still in a loud machine while looking at pictures of a calm beach, and then was told I’d have my results soon.
So here’s my back:
At the very bottom on the left, you can see the root (haha) of all my problems: a herniated/ruptured disc that’s compressing my S1 nerve root between itself and my magnificent bone spurs. On the right, you can sort of see the way the erupted disc material is covering up the nerve in question, which is why I can’t feel any of my inner thigh and otherwise feel like cold lightning is shooting down my left leg. It’s really fun.
The first doctor I saw wasn’t too big on the idea of surgery; he wanted to start with conservative approaches, like epidural injections to just turn off the whole nerve for a while, which would’ve been great back in October when the problem started. But now, it’s the middle of April, nothing has gotten better, and I just want to get my life back. And I know that surgery doesn’t guarantee me getting my life back, but I feel like it’s doing more than just putting a booboo bandaid on it and wishing me good luck.
So the second doctor I saw agreed, but said that the surgery might be somewhat complicated by my size (because I am, in fact, fat), since their retractors are only so big, so if they can’t reach my spine during the surgery, they can’t do it. BUT in either case, they scheduled me for surgery on July 1 (and I’m like HNNNNNGH SUFFERING FOR TWO AND A HALF MORE MONTHS THIS WILL BE FUN), so we’ll see what happens. I’ve been judicious about my diet since that point (save for Easter week, when I just ate brownies and chocolate bunnies as quickly as possible so they’d go away), and I’m hoping to find a way to walk every day (which is harder than it sounds, since we live on a very steep hill, like it feels like a 45 degree grade, and that is B A D for herniated disc spinal issues).
But either way, we’re actually doing something, and I know where the problem is now. Once the surgery is over, I can reenter physical therapy and focus specifically on healing that area instead of just doing general stuff and hoping it works (which I think actually made things worse before). And with any luck (read: hard work on my part), I can finally put my back behind me.
BIG OPTIMISTIC POINT #4: MISCELLANEOUS!
And a list of other miscellaneous things that have me happy right now:
We bought a new (to us) van yesterday. A 2016 Honda Odyssey fancy pants version with heated leather seats and screens in the front and a cooling box and seating for eight and rear temperature control and SO MUCH SPACE and everything about it is wonderful. It’s a little bit of a price stretch at the moment, BUT it’s worth it because our old van was basically falling apart at the seams.
Sam is finishing up his testing to go back to public school in the fall. A lot of it relates to him being almost obviously on the autism spectrum and scoring SUPER HIGH on ADHD tests, and we want to make sure that he’s able to get whatever accommodations he needs in school next year so that he doesn’t fall behind at all (because he’s absurdly smart but he’s also very… mmm, executive dysfunction-y). We’ll be having that meeting the day before Kyle and I leave for Florida next month and with any luck, they’ll really see him and be able to give him whatever accommodations he needs next year.
The twins continue to excel in school, which is wonderful. Their vocabularies are soaring, and they’re absolutely loving their class and their friends. Carrie, who was already pretty conversational, has added so much vocabulary to her speech, and it’s hilarious. She’s got enough vocabulary to express herself more clearly but she also sometimes grasps for words, like the other day, she wanted us to close the car windows because they were messing up her hair, so she said, “Turn it [the windows] off! My hair is not working!” And that was adorable. And Isaac has gone from being incapable of expressing himself when things are hard to being able to confirm in words what he wants when we ask him. Today, he informed me that he wanted the lights turned back on in his bedroom (because he didn’t want to sleep yet), and he’s just overall been so much more talkative and happy because he has words and is understood.
Also the cats are awesome. And Kyle is awesome. We’re all awesome.
Spring is trying its best to start in these parts, and thankfully, it feels like life itself is coming back to life. And that’s a good feeling.
Do you ever get in one of those foul foul moods? Or not really a foul mood, but a mood where everything you want to talk about comes out tinged with complaining? And you don’t want to be that person that nobody wants to talk to or about because they’re always complaining, but it’s just. There.
I feel like that’s me right now, so close to the end of this pandemic, hope being dangled in front of me, but still far enough away that something or someone could ruin it, and maybe because things feel mostly good, the bad is amplified somewhat? I don’t know.
I try to do the gratitude thing, but that feels disingenuous, like yeah, I’m grateful for a LOT, but that doesn’t make the bad feelings go away any. And I want to be honest in my writing, but I also don’t want everyone to be like “ugh, Abby’s complaining again, bye.” Because I know things aren’t that bad, BUT.
I guess I can talk about the angst first and then end on a good, or better, note. The angst stems 100% from my sciatica and how it makes me feel so… limited. Because I am limited. I don’t know if it’s fear of pain or actual pain, but I’m constantly finding myself incapable of doing things that used to be easy for me, like cleaning the house or taking a walk or standing in the kitchen cooking dinner for the kids. It’s not the worst thing ever, like my pain isn’t back at Thanksgiving levels, but I think on some level, every time I feel a twinge, I worry that it’s going back there, so I limit myself.
I’m fortunate enough to have a really understanding husband who would rather I limit myself now, before it gets bad enough that I like. Need adult diapers at not even 40 years old. But it’s still frustrating. I don’t know how to explain it, really. It’s like one day, you’re able to do things, and then the next, you find yourself stuck for an indeterminate amount of time. You forget that there’s an issue because you’re feeling better, so you start picking up stuff off the floor, but then two minutes later, you have to sit with your feet up for another ten minutes so that you stop hurting. It is SO dumb.
And it’s so easy to say “well, do two minutes at a time!” but it’s somewhat Sisyphusean or worse. You do what you can but then you’re out of commission because you pushed yourself.
So that’s kind of colored my last month or so, and it’s annoying, and I hate it. I’m going in on Thursday to get an MRI and find out exactly what is causing this issue and if it’s something I can fix through targeted physical therapy or if it’s something I need surgery for (though the fact that it’s lasted as long as it has makes me think that probably we’re past the PT working point). Insurance companies like to go for minimally invasive steps first, but I’m like… I’m clearly having issues here that are more in-depth than just oopsie, threw out my back.
But yeah. Background radiation of my life, etc.
The twins turned three about a week ago, and it was a fine time. They were happy with the day, even if it kind of went by in a rush (one that I’m not getting into, but suffice it to say that my annoyance at being unable to do stuff definitely made things less fun than they otherwise would have been).
I ended up turning their day into a much bigger Thing than it normally would have been (for Sam’s third birthday, for instance, we just went to a museum and had cupcakes) because their last birthday ended up being a flop because Covid, and I guess I wanted this year to be something of an improvement. And I think it was, but man. Twin birthdays take a lot out of you. You do something that seems like the bare minimum, except because you’re doing it for two humans instead of one, it actually feels like you’re overdoing it by a lot.
But again: they’re happy. Which is what really matters.
Happier news without the asterisk, they started school last week! Early Intervention ends when your kid turns three, so they transferred to our town’s public preschool the day after their birthday, and so far, they’re loving it. We’ve yet to have one of those separation anxiety crying days, not even on the first day (maybe them being in the NICU desensitized them to going away from us for a while), and every afternoon, they come home talking about how they had “so much fun!” Their crafts are starting to cover the fridge and walls, and I’m just relieved that they’re able to do the art projects they love so much without me picking up after them.
It’s surreal having kids going to school in person. I’m a little worried because Massachusetts has been trending upwards in terms of cases, but at the same time, the school of ~600 people (kids, teachers, staff, etc.) has only seen about 12 cases in the entire year, so whatever they’re doing seems to be working. I wonder if it will still work once the schools are forced to go full time in person in April (which I do NOT agree with–it’s two months, y’all, just take the L and prep for next year), but the kids are so good with their masks that at least I feel like they’re protected on some level.
I have no idea what their days at school look like. I know they’re getting speech therapy, physical therapy, and occupational therapy, but I have no idea what the schedule is, anything like that. And I’ll be real: it feels SO GOOD to not know. SO GOOD. Because it means that I’m not the one coordinating it! I don’t have to shepherd them into a Zoom call that they won’t pay attention to, I don’t have to freak out because I forgot a meeting, I just get to use the mornings to do Sam’s homeschooling and then let them sleep the afternoons away.
It’s very nice.
Sam, meanwhile, is in the process of being evaluated by the school to see how he’s done this year and what accommodations he’d need in the next school year, if any. His therapists across the board have suspected that he’s not neurotypical, but waitlists to get a diagnosis from a doctor are a year long at least because of Covid, so we’re trying to push things through with the school first and see what they say. Last week, he spent three days doing academic testing, which went very well. His tester remarked that he’s clearly VERY smart, and that he does seem to have some executive dysfunction issues, but that he’s also good at getting himself back on track.
(at least when I’m not around, but I figured that would be the case, because he’s comfortable enough around me to melt down completely and know that I’ll never stop loving him or being blown away by him)
We’re next going to talk with the school psychologist, just to see where he is there, and hopefully, we’ll have a game plan in the next couple of weeks. I’m committed to sending him back in the fall, partly because I’m getting to the academic point where I’m a little out of my depth (he’s already learning area and perimeter, and algebra can’t be far behind), partly because he needs to be with his friends again, and partly because we both miss me just being his mom, not his mom and his teacher. It’ll take the pressure off both of us for him to be back in public school, and I’d be surprised if it weren’t safer for him to do so by fall.
And I think he’s in a good place to go back. It usually takes some cajoling, but he’s been keeping up with his schoolwork, and he’s on track with other first graders in that regard. I’m excited to see what second grade brings for him, and what life with the kids out of the house for a couple of hours a day brings for me.
(I just realized that I haven’t been home alone with nobody else in… probably six years? Or so? Maybe four? It’s hard to say)
Meanwhile, vaccines are rolling along in our house. I’ve got asthma and am obese, so I got to be the first in the house to get a pair of Pfizer jabs, the last one on Saturday. Side effects were minimal–I was REALLY tired on Sunday (slept for ~15 hours because my husband is wonderful and hung out with the kids on his own all day) and then had pretty gnarly body aches when I went to bed last night, but things have since calmed down. No fever, no chills, certainly nothing at all compared to actual Covid.
I’m hanging out on my phone a lot to try and get my mom an appointment for her vaccines, too, since she’s part of the group whose eligibility just opened up today. This remains a tricky thing to do, but I’ve been keeping up with vaccine news, and considering how manufacturers are ramping up production, I feel like supply will overtake demand in the next couple of months, and how good will that feel? And with any luck, that will correspond with cases going down, with hospitalizations going down, with deaths disappearing entirely.
It’s just that end of the school year feeling, that time when summer is RIGHT THERE, IT’S RIGHT THERE GUYS, and you just. Don’t care about classes, you don’t care about homework, summer is RIGHT THERE (and GOD, so much worse when you’re a senior in high school or college, you’re just like THIS IS ALMOST OVER, HOW AND WHY SHOULD I CARE??). You can’t think about your finals or about anything but summer being RIGHT. THERE. And YET, despite that feeling, it’s important to still be careful. Still wear a mask, still be safe, still make good choices, because unlike skipping homework during senior year, skipping out on responsibilities as the pandemic starts to cool down will genuinely have consequences (see: Brazil), consequences that can be deadly.
In other words: take care of yourselves, and each other.
I feel like this blog has been an absolute downer for the past year, though understandably so. The last year has SUCKED. I don’t think anyone had an objectively good year last year (except Big Daddy Elon Musk, but billionaires don’t count towards people having good years), and I was scrolling through my blog reflecting on how… just MLEH I’ve been about everything in the last twelve months. And again, completely understandable, but also I feel like that can’t have been fun to read. I’m sorry.
But here we are, encroaching on March 2021, one year of pandemic and social distancing and 500,000 people dying because assholes and masks and so on and so forth, and I’m actually starting to feel something that tickles a bit like hope. Real hope, not the false hope that kept popping up over the last year when people were naively like “it’ll be gone by summer!” or things like that. Real, honest-to-god hope.
After all, this is roughly the timeline they told us to expect back in mid-March of last year, when everything shut down and everything changed. Mid- to late-2021. We’re right on schedule.
I’m getting my first Fauci ouchie tomorrow, 4:30 p.m. I don’t think I’ve been this excited about a needle since the first injection for IVF, way back in 2016. My state, dear old Massachusetts, has kind of bungled the process for people to make appointments–my dad, 68 and with a heart attack in his medical charts, hasn’t been able to get an appointment, so I’m refreshing all sites frequently to try and snag one for him–but by some flash of luck, I woke up the other day to an alert on my phone telling me that a CVS near me had appointments available. I fit squarely into Tier 2 of the second phase of vaccine rollout up here–obesity and asthma qualifying me as medically at risk of a Bad Time–so I signed up.
And I’m ready.
(even if I’m a bit frustrated that Massachusetts hasn’t bothered to start prioritizing teachers yet while other states have and the websites to get appointments are basically strung together with some twine and duct tape and a few prayers and GOD, I wish I could take a hammer to said websites and get my handful of coding friends to rebuild them functionally from the ground up)
I have plenty of friends who’ve already been vaccinated for various reasons, ranging from frontline workers to teachers to people with medical issues and everything in between. Of that plenty, many have experienced the “your immune system is working” side effects–the aches, the fever, the chills, the generally feeling like shit from about hour 33 to hour 48 after the second dose. I’m ready for that. Kyle’s been keeping in touch with his boss about what’s going on, so with any luck, when I get the second dose, I can just coast through all of those side effects feeling vile but being mostly unconscious.
But I’m ready. I’m ready to not be afraid to go places besides Target or to not be afraid when I’m IN Target because the people behind me don’t seem to grok that six feet and six inches are not the same thing. I’m ready to feel like I’m not going to be putting myself in more danger if I have to go to the doctor for whatever reason (seriously, in the past year, I have avoided going to the doctor so many times I probably shouldn’t have because I didn’t want to accidentally expose myself). I’m ready to hopefully not be a link in a chain of people getting sick (like we don’t know yet that the vaccine prevents or reduces transmission, but the science–even with the new variants–looks pretty good so far).
And I mean. When even the most conservative estimates have everything easing up by summer, it’s hard not to be hopeful, outside of the trenches.
(in the trenches is another story, and every time I talk about hope, I think of my friends who do work on the frontlines and wish that I could somehow have a million dollars each to give them so that they could go on the most luxurious, relaxing, magical vacations of all time. Like hell, wanna spend two months on sabbatical in Hawaii? Go nuts, aloha. French Riviera whispering your name? Au revoir, you amazing heroes)
I’m getting vaccinated tomorrow, and then the twins turn three on March 14 and start school on March 15. Sending them in person isn’t a decision we made lightly; even though the school they’ll be attending has had exactly 10 cases out of 300 students and about 50 staff (and none of them in the preschool), the risk isn’t zero. On the flip side, though, Isaac has stagnated and regressed so much since daily ABA stopped, and I HATE phrasing it like that because it makes his autism sound like this horrible thing, and it’s NOT, but at the same time, I can feel how badly he wants to communicate with us, and goddamnit, I can try with the rudimentary PECS and I can say the words and do all sorts of things as his mom, but because I’m his mom, there’s a lot I can’t do. I’m not trained or qualified to do so much of it.
He really was making such incredible progress when he had ABA five times a week, and I know the language is there. And he wants to express himself and is SO HAPPY when we understand him. And preschool will give him an opportunity to be better understood, whether that’s vocally or through signs or through PECS. Whatever he needs. I just want him to not feel like he can’t be understood, because to me, that’s about as lonely and terrifying as it gets.
And Carrie is something of a ragdoll. She’s clever and sweet, and where communication is concerned, she’s at age level if not above it. BUT when it comes to physicality, her muscle tone is almost comically low. She seems comfortable wherever she is, which is great, but she gets tired quickly because she has to put more effort into making her muscles work than a kid like Isaac (whose muscle tone has always felt high to me because he’s always. so. tense.) or even Sam does. It impacts her ability to use her fine motor skills with holding a pencil or getting herself dressed and undressed, and I have no doubt it’s impacting her digestion. In the long term, it’s going to cause problems for her–she’ll be in pain, and I don’t want that at all. And if we can get started fixing it now, if I can get her therapy now, maybe she won’t follow in my footsteps and end up in remedial gym or getting an MRI for sciatica and feeling like she’s in her 90s when she’s not even 40 yet.
Plus, they’re SO good with masks. It’s kind of surprising, honestly. I would’ve expected the twins to just hate wearing a mask and to fight it all the way, but the two of them are absolute champs. They even have Barbie and Hot Wheels disposable masks along with the other disposable masks I’ve gotten them for the remainder of the school year. I think we’ll be okay. I think they’ll thrive in school, and I think we’ll be okay.
For the first time in forever…
…I can kind of see the rest of the year clearing up, like the way the sky clears up when it finally stops raining after a particularly long stretch of wet days. I feel like when I say, “when the kids go back to school in September…” I’m not doing some sort of wishful thinking; I’m saying something that will happen. When Sammy goes back to school with his friends, when the twins are in preschool five days a week, when I see my extended family for the first time since Christmas of 2019. WHEN, not IF.
Speaking of Sammy going back to school (WHEN that happens), I got in touch with the special ed department at his school to see if they could evaluate him for ADHD and autism or at least just to see if he has anything that would require an IEP to deal with in the coming year. His therapists have him on a waitlist to see if he can be evaluated outside of the school, but because of Covid, that waitlist is excruciatingly long–we’re talking years–and I don’t want him to start second grade at a disadvantage. I know that whatever else is going on, he deals with a lot of executive dysfunction and hyperfixation. I know that his mind goes so fast from one thing to another to another, I know that he acts like boredom is torture. I know that the idea of failing at something even a little brings him to tears, no matter what reassurances we offer. I know that if he’s asked any question about himself, no matter how benign, he shuts down and furiously refuses to answer.
I don’t know what that all adds up to. I do know that it affects his schoolwork. That he melts down when something is hard for him, that it’s an absolute WAR to get him to do his social studies and reading. That he doesn’t focus, can’t really focus, even on subjects he loves. But give him Pokemon or Minecraft or the deep sea, and he will tell you everything in excruciating detail. That he’s terrifyingly smart–doing third grade math as a first grader and absolutely OWNING it–but that he needs someone to help him apply that intelligence.
And I don’t know. Maybe it’s that I’m not as good of a teacher as I like to hope I am. When he’s on, he REALLY gets stuff. He’s getting straight As in math without even blinking, and I think he’s doing okay with improving his spelling and handwriting, but I feel like there’s something about his learning style that’s out of my reach, and if nothing else, I’d like to see if the staff at his elementary school can identify it.
A lot on my plate. Again. I can sort of feel my sciatica flaring, but I’ve been more careful to take time off and be diligent with my medication because I am NOT doing that again. I have an MRI to look at it up close on the 8th, and until then, I’m just taking it all one day at a time and knocking items off my to-do list little by little.
And feeling like the sun is starting to peek through the clouds. Which is nice.
This was going to be a long blog post about the inauguration and politics in general, but that leaves me feeling tired. Suffice it to say that I’ve breathed a sigh of relief, but I also acknowledge that there’s a lot of work that needs to be done, and I’m focused wholly on the future and how to improve things instead of bemoaning the immediate past. The past informs the direction that we need to take as a country (a wholesale rejection of white supremacy, measures to rectify massive wealth inequality, having an actual PLAN for the pandemic instead of just pretending it doesn’t exist so we don’t spook the markets, etc.), but I’m through arguing about the past four years. They were politically terrible. Let’s move forward.
Instead, because I don’t feel like getting my blood pressure up today, I’m talking about life overall, or life in our house, at least.
Because it goes on. Like I said last time, insurrections, elections, inaugurations, Bernie with his mittens, it all happens and it all affects you, but at the same time, life goes on. You read a headline, you feel angry or sad or hopeful (which is new), then you have to run to the post office or call the kids’ therapists or something or another. Maybe you discuss it, you sign a petition, you run to a protest, you donate, but life is going on with or without you.
Life goes on.
The twins had their preschool evaluations on the fifteenth, and it went well, I think. They met with the entire preschool team, with the physical therapist running the evaluation while the others–the teachers, the SLPs, the OTs–took notes and observed. Kyle, Sam (who was there because we didn’t have childcare for him), and I sat in a corner of the room that was separate enough for the twins to not zero in on us instead of what they were supposed to be doing.
They started out pretty shy. Carrie warmed up to the situation first, when she saw that they had a dollhouse, because she is quintessentially what toy marketing execs want a little girl to be. She loved that the dollhouse had a little toy cat with a little toy toilet and a little toy bed, and she spent a great deal of time meticulously tucking the toy cat into bed or settling it on the toilet, not really talking about what she was doing, just doing it. She was SO quiet that the SLP had to come over and talk to us about her speech, and we talked about her on bad days–preferring one-to-two-word phrases over sentences, even though she CAN use sentences, and murmuring nonsense under her breath to tell you things. She’s very stubborn, so if you want her to talk to you, she just will not do so.
She also, apparently, struggled with her fine motor strength–not her accuracy, but her strength, coping the OT’s movements with her crayon but not really applying a lot of pressure.
And, really, much of the evaluation was for her. Isaac’s struggles are pretty easy to spot and pretty easy to describe. He spent the first ten minutes of the evaluation standing stark still like a statue and smiling shyly behind his mask. Though he eventually warmed up, he’s mostly nonverbal still (which is more of a “behind” thing than a permanent thing–he’s about where Carrie was between 12 and 18 months, and I think he’s mostly stagnated because the pandemic has prevented us from having in person speech therapy for a year now. Like, we work with him, but we don’t necessarily know what to do to encourage him to, for example, speak independently instead of parroting us) and has exactly zero sense of danger, which combines poorly with his extraordinary fine motor skills.
(which sounds kind of cool, but you don’t expect your two-year-old to figure out how to unlock a window, create a tower of stuffed animals to reach the lock, unlock and open the window about two inches, figure out how to open the screen, open the screen, and then start tossing his toys down from the second story window. That’s a surprise. So yeah, the windows in the twins’ room are duct taped shut now)
But the evaluation was both to get an idea of where Isaac is and to see if Carrie actually qualifies for the preschool’s special ed program. She’s right on the border where she MIGHT need the extra help, but she might also catch up with her peers by just being with them. It’s hard to say. And it’s not a huge deal either way–when I talked with the head preschool teacher over Zoom, she explained that Carrie will have a spot in the program no matter what, it’s just a question of whether she’s there for free as a special ed student or whether we pay the $140/month tuition.
And even that isn’t a big deal. When Sam was in preschool at the twins’ age, we were paying probably… mmm, I want to say about $200/week because it was a full time private daycare. Which I LOVED, but I can even point to ancient blog entries I wrote here about how I realized that having twins meant no more daycare for anyone. So back then, I was wondering “omg how are we going to even afford preschool for them, that’s $400/week, that’s $1600/month, how can we do that, that’s a second mortgage?”
The idea of both of them going and us only paying $140/month? $35/week? It’s kind of miraculous. And if it’s free, I’m just going to do a dance.
We’ll find out sometime this week how things went, and then we have a meeting on February 2 to set up their IEPs (or IEP if Carrie doesn’t need one). And that’s WILD to me. I’ve talked so much about IEPs with so many people (my sister always had one, my mother-in-law is a special ed teacher, one of my besties is an SLP, etc., and that’s not even counting the huge village of parents of children with IEPs who are like “yes, I will help you with this, I will tell you how I best advocated for my kid”) that actually diving into one is like
Let alone diving into TWO.
We’re very fortunate. Our town is apparently one of the best in the area for special education from top to bottom (which isn’t surprising; everyone here is some degree of wealthyish and it looks like fucking Happy Valley from “Mickey and the Beanstalk” and then there’s me with my overgrown ugly lawn covered in dead leaves like “oh yeah, I totally belong here!”), so while I know I’ll have to fight for a lot of things, I don’t feel like I’ll have to fight as hard as I would have somewhere else.
(like apparently, my hometown, which is just a few miles down the street from me, has one of the WORST special ed programs in the area. They used to be good, according to all of our therapists and contacts, but nowadays, things are just garbage from top to bottom)
It’s a lot. But I feel ready.
And life goes on.
And it might end up being THREE IEPs, anyway. Sam’s been having in-home therapy for a couple of months now to deal with, oh, a whole bunch of things. His anxiety had reached a point where he wasn’t sleeping in his own bed at all, he has days where he barely eats, he’s an absolute ping pong ball if he doesn’t have something with a screen drawing his attention… it’s a lot. Kyle and I had a sit down talk with the therapists over Zoom on Monday, and they suggested having Sam evaluated for both autism and ADHD.
The autism bit has me a bit skeptical. They were noticing a lot of the outward signs, and I agree that Sam has a lot of sensory issues, BUT if he is autistic, he’s also the most adamantly extraverted autistic kid I’ve ever met. And that’s not to say that autism can’t look like that–it’s a sundae bar, after all, and you can have all sorts of weird varieties of stuff going on–but it’s just. I hate to say this because it’s so not clinical, but he doesn’t ping my autism radar the way Isaac did from ~day one. Isn’t that a dumb thing to think? Like “mom hasn’t ever gotten autistic vibes from him, not even a little” is not a good diagnostic criteria, and should not be used as a diagnostic criteria.
I took one of the screening tests for him, the one they use in clinical settings, and maybe I’m too close to him to see (but unless I’m missing something, I feel like a lot of these tests are just asking parents how their kid is anyway and then observing in a play setting?), but he scored way too low on the autism test to even warrant further testing. And again, maybe I’m just too close to the situation, but like. I can’t imagine I’m missing THAT MUCH, you know?
Now, on the ADHD test, on the other hand, he scored off the charts. Everything from his lightning fast mind to his constant movement (not stimming, just MOVING) to his general breakdowns if he gets a question wrong was right on there. But professionals who see him in brief settings keep saying “no, he doesn’t have ADHD, but he’s probably autistic.”
I don’t know how to respond to that! I go, I do the assessments that are available, and maybe I have confirmation bias or maybe I’m too close to the situation or maybe I’m just crazy, but I end up getting super low scores for autism and super high scores for ADHD and I just ???? am I missing something? I see this child all day every day. He’s my son. We talk all the time. We snuggle up at bedtime and go over his day. He tells me matter-of-factly how he feels about so many things. I know when I can and can’t push him on things, when we can work through something or when we need to disengage from it. I’ve SEEN him from the moment he was born, and I’m just so confused here. Are they seeing something I’m not? Are we all just misinterpreting the same information?
Anyway. We’re trying to get in touch with someone to schedule an evaluation for the next soon, because if he does have autism or ADHD (or sensory processing disorder, which I also suspect), I want to know ahead of time so that I can plan IEP meetings for when he gets back to school in the fall. If nothing else, I want to be able to talk to the school in general to say that while he’s soaring in math and science, and while he can read perfectly well, he struggles with handwriting, with creating sentences, and with reading comprehension.
Life goes on.
It goes on for me, too. I started my inauguration day with a visit to an orthopedic specialist to talk about my back. Here it is:
Note how spines are not supposed to look like that. I apparently have slight scoliosis (less than a 25 degree curve, which means I’m not really a candidate for surgery, more for just PT and figuring out how to live life overall with a wonky spine), some twisting going on (though it’s unclear if that was just posture-related or is an actual Problem), and bone degeneration that’s a bit more than usually expected at my age (not quite 40). I’m supposed to be getting on a calendar for an MRI sometime in the next near future so that we can see what nerve involvement is there, and if there is nerve involvement (which there is, I can feel it), I’m a candidate to get an injection of anesthetic and steroids into my sciatic nerve in order to keep it from, you know, murdering me.
It’s both vindicating and frustrating. On the one hand, I’m able to point to it and say, “LOOK, see, the fact that I’ve thrown my back out at least once a year since I was 20 has a REASON behind it. I’m not being overdramatic, I do have some issues that could stand to be addressed in numerous ways!”
But on the other hand, I feel frustrated that I’m just learning about this now, that I didn’t think to get it examined before, when I was throwing my back out with such regularity, not necessarily because I was lifting something wrong or doing something weird but because my back is just prone to spasms. I could’ve spent years working on this and not been here, feeling miserable and useless.
Oh well. The best time to plant a tree is 20 years ago. The second best time is today.
And life goes on. The pandemic is slowing, slowing, slowing. It doesn’t feel like a very fast slowing (because how would slowing be fast??), but it’s happening. If President Biden is able to really get his vaccination plan off the ground, maybe summer will be normalish, maybe we’ll go on a very short vacation to like Hershey Park and Sesame Place, maybe this isn’t a forever sort of thing. Maybe we’ll get on a plane again someday, maybe we’ll travel across the country and the world again. It feels possible, which is a huge step above where it felt even a month ago, and I’m grateful for that.
This year, when we went to my parents’ house for Christmas Eve (we basically see them every week anyway), my mom talked about how she’d felt a bit like Christmas was another thing on her to-do list sometimes. That with everything to check off–the decorating, the buying, the wrapping, the cleaning, the cooking, the baking–it can feel like it’s just another Thing. And Christmas is absolutely my second busiest time of the year, no doubt. The March-through-July stretch is still a LOT crazier because every event every month in that stretch is a Big One, not an optional one, and none of them are my birthday.
So yeah, Christmas is a crazy time of year, but it’s usually also a rewarding time of the year. Sure, I’m pulling my hair out somewhat when we try to finish up on Christmas morning so that we can get to my uncle and aunt’s house before everyone settles in for dinner, but then there’s the catching up with everyone and the laughing and meeting new babies and new boyfriends and sometimes, my uncle makes this amazing saffron cream pasta that makes you understand why people pay so much for saffron…
Which isn’t to say that this year wasn’t rewarding. It was, just. You know. Different.
Like all of 2020.
We’re still combing through everything the kids got. My parents and Kyle’s parents spoiled them, of course, because that’s what grandparents do, and our playroom is currently overflowing with both (a) boxes, and (b) toys. We’ve been bringing things out one at a time, all while trying to sort through what’s in the living room and find places for that.
Sam got a pair of robots and some video games for Christmas, along with a few Lego sets, because he’s frustratingly easy to shop for. He’s one of those kids whose interests are narrow and specific, so on the one hand, you know exactly what themes to hunt down in toy sections; but on the other hand, you’re just like… I really want to get you something different, but all you want are these things. But he’s seemed pretty happy with what he got, and I feel like his gifts have much more staying power than the twins’.
Isaac was the one I thought would be least impressed with his gifts, but to my absolute surprise, he’s the kid who took to everything the fastest and has been playing with his gifts most consistently. Santa gave him a singing Mickey Mouse train, Kyle gave him a weird musical toy called a “Rocktopus,” and my parents gave him a little red Playmobil minivan. The train and the Rocktopus are never NOT singing, and the minivan, despite being hard as a rock and full of breakable things, has become his first ever “must have it in bed with me” lovey.
And Carrie, who is every little girl ever, received pretty much the best gifts for every little girl ever: an Ariel doll, a makeup table (for pretend makeup, of course), a dollhouse, and a dress up gown with accessories. She’s been frolicking about the house in a whirl of joy, and when she’s done being whirly and joyful, she falls into my arms, sighing happily and saying, “Oh Mom. I you so much!” (which is her way of saying that she loves me so much)
So it’s been good. And Kyle and I spoiled each other, too (I gave him Whataburger sauces and a fancypants sleep mask; he gave me jewelry and my very own fountain pen), and we spent Christmas Day doing nothing but watching movies on TV while eating popcorn and pretending that it was a normal Christmas and we were totally at our local theater and not scrunched up on the couch and saying things like “SAMUEL MATTHEW, STOP RUNNING RIGHT NOW.”
We saw Soul first, and it was honestly one of the best Pixar movies I’ve ever seen. It’s hard to explain it because the plot is kind of loose? And the message is kind of loose? But it also was a film that wasn’t escapism, that didn’t want to be escapism, that wanted you to leave the theater-slash-living room and go live life, not just exist. And it was heavy material, but it was handled in a strangely effervescent way, so that even though it was a lot of DEEP questions that required a lot of heavy pondering, you didn’t feel bogged down by them.
And it was gorgeous and made me more determined than ever to take the kids to New York when this craziness is over.
Wonder Woman 1984 was… eeeeeh. Kyle and I watched it after the kids went to bed, having our first “date” since the pandemic kicked in, and… eeeeeh. There was a scene at the very end that had us both sobbing, Pedro Pascal and Kristen Wiig did great jobs for the most part (the CGI got in Kristen Wiig’s way towards the end, which was a shame), and there were some fun moments, but… eeeeeh. It was disappointing. I didn’t go in with super high expectations, and even my lower expectations weren’t quite met, so that’s a shame. Still one of the better DC movies but… eeeeeh.
And thus the year is finally, finally drawing to a close. I know that the world in general won’t turn a magical corner on January 1 that has everything back to what we want it to be (though wouldn’t that be a trip), but at least we have the vaccine and a new presidency to shake things up a bit, and hopefully, by this time next year, I won’t be digging for scraps of things that made this year good.
It’s funny. Back last December, I bought a memory jar for us to keep this year, figuring we’d have a lot of cool memories to read about on December 31 as we counted down to midnight. It didn’t last long, mostly because mindfulness, while awesome, is one of those things it’s harder to do when you’re in the trenches of motherhood. You know what I mean? Those days, those weeks, those years where you give all of yourself and then some, and you take a shitton of pictures, not to show off your awesome mommy skills or embarrass the kids in the future but because you can’t be in the moment. You’re clinging by a thread, and you want to remember the good, but you can’t focus on it because the bad keeps showing up.
It’s not been the worst year for me; by comparison, we had it pretty easy. Despite Kyle losing his job in the spring, he got a MUCH better job in the fall, one that pays more, even if the benefits need some work. Sam being homeschooled has meant I can really focus on him for hours at a time, despite the twins, and he’s been able to get a more individualized learning plan (read: my six-year-old is doing multiplication and division without even thinking about it, and it’s weird). He and I have had more than a few outdoor adventures, including a really fun hike back in October (sigh, that was roughly the last time I felt healthy enough to get out and go) and a visit to a nearby pond.
Sam and Isaac both started therapy (in December and March, respectively) to help deal with everything. Isaac’s ABA has been better than I expected and not the nightmare I’d feared; Sam’s therapy has just started, but I can already see how he’s much calmer on therapy days than on days when his therapists don’t come. They’re both doing really well, and wildly enough, they’ll both be starting school again next year… in March and September, respectively.
I was hospitalized for my mental health, and I’ll be real, it’s a miracle more people haven’t done that this year. I’m lucky: my husband noted that I was doing really badly (I legitimately do not remember this summer, that’s how bad it was) and MADE ME get help. I learned the difference between wanting to die and being overwhelmed by life (there is a difference), and I learned actual real coping skills. I’m starting maintenance therapy next week so that I can focus on keeping my brainmeats healthy instead of letting them slip and slide and become a mess again.
I have a path forward for my physical health: my doctor has finally referred me to an orthopedic specialist for my back, and with any luck, I’ll have a specific way to get to a point where I can actually get out again (like I feel like I could now, but it’s cold and I’m also terrified). I survived the worst physical pain I’ve ever felt this year, somehow (wild thing about sciatica being that you’re in the worst pain of your life, pain so bad it gives you PTSD, but you are nowhere near dying, and when the pain ebbs, people mostly just tell you to walk and lose weight, like they do whenever you have a problem while fat). I had surgery and ruled out a major potential cause of my overall life issues.
So it hasn’t been an all bad year for me. But I’m still eager for it to be over.
I don’t necessarily think 2021 is going to be better overall, at least to start, just that we’ll all mostly be used to the chaos, so it won’t hit as hard. And slowly, slowly, things will get better. Plenty of people will still be idiots, of course, because that’s the world we live in, but idiocy can be mitigated by good people doing good things and stopping bad things. It’s going to be rough going. None of the positive things are quick fixes; they will take time, and they will need a lot of pressure, and just because things are no longer at an immediate boiling point does not mean things are better. Creating a better world is a true effort.
With that in mind, I decided that no, 2021 is not my year. It is my bitch. I am transforming myself into a screaming banshee of rage and forcing things to get better. I will scream and I will fight and by this time next year, I will be able to say, “you know something, that wasn’t a half bad year after all.”
I was born in 1983 and grew up in an age when girls weren’t really diagnosed with autism unless the symptoms they presented severely interfered with their daily life. A girl like me, quiet and awkward, a little weird, a little too obsessed with the Thing Du Jour (American Girl dolls, Mandie books, My Little Pony, Barbies, spooky stuff, etc.), mostly gets good grades but really struggles with homework in subjects she doesn’t like… I flew under the radar. I didn’t stim or do anything that would make me seem weird. I didn’t freak out when the sounds in the cafetorium/cafeteria were too much for me to handle, I just got really quiet and didn’t participate in the lunchtime conversation. I excelled in certain subjects and flailed in others. I was flawless when it came to standardized testing, but then got an 8/100 on a math test the same week I soared into the 93rd percentile for the NMSQT.
I could talk, and I took care of myself physically, enough that I didn’t usually warrant a second glance. Oh, I got bullied and made fun of in junior high–brutally at some points–but I flew under everyone’s radar for the most part. I don’t think anyone ever clocked me as weird enough to maybe be autistic, because back then, in the 1990s and early 2000s, autism wasn’t as well understood as it is today, so my cocktail of manifestations didn’t alarm anyone.
Masking is pretty common in our world. We all wear masks sometimes to hide certain aspects of our personalities depending on the situation; for example, if you’re at an important job interview, you’re not exactly going to be showing off the part of your personality that likes to do keg stands or the part of your personality that likes to lounge around in the nude on weekends. There’s nothing wrong with either those traits or the masking of those traits. It’s just something that you do to survive socially, because your new boss does not need to know that you like a gentle breeze ‘round your privates on Sunday afternoons.
Where autism is concerned, masking is a lot more… consuming, let’s say. Autism isn’t a personality trait that shows up in certain situations (like even if I do like to run around naked on weekends, I don’t do that in the office); it’s the way your brain is wired. Not wrong, just different. The trouble is that different can be socially damning.
I remember when I was younger, there was a kid on my school bus whose autism manifested much more noticeably than mine. While I would sit quietly and stare out the window, focusing on the cool sensation of the glass against my forehead, he would talk and flail and laugh, and the kids from the back of the bus bullied him mercilessly, sometimes going so far as to sexually harass him. He stood out too much; it was social suicide.
And, well, I learned from that and from other small situations as I grew up that letting those weird parts of you show is too dangerous. That it’ll get you made fun of and torn to shreds. That you’ll be alone. I saw the girl who came from a lower income family, whose clothes and hair were always dirty, who always sat alone. She was too different; she was alone. I saw the kids who I now regret not befriending, who went on and on for days about D&D and all of those fantasy stories, and I saw how people avoided and laughed at them, and I learned a lesson. They were too different; they were mocked.
You hide things, you know? Don’t talk obsessively about Disney World, that’s weird. Are you excited about that thing? Don’t flap your hands or bounce or do a little dance; that’s weird. Are you too tired to think? Don’t play with your hair; that’s unhygienic (Mrs. Dube, if you ever read this, I hope you feel like shit for what you did to all of us in your class). Everyone is having fun at this party, and even though it’s too much for you, smile anyway. People think it’s weird when you talk to them without meeting their eyes; make eye contact, even though it hurts.
In a way, I sometimes felt like an alien, trying to learn the way that the world was supposed to work. It’s part of why I loved being onstage–it was like an evaluation of my ability to act like a human being. “SEE?” I could say, as I got into one of my character parts (I had so much fun with those). “LOOK AT HOW GOOD AT HUMANING I AM!” And I wasn’t weird or different, I’d unlocked the secret to being human like everyone else.
And then the lights went out, I got offstage, and I was right back to being bad at being a person again.
(this all sounds very sad, but I promise, there’s good coming)
But one thing nobody talks about, when they talk about masking and autism and all of that, is the beautiful freedom of unmasking: of finding someone or several someones who catch a glimpse beneath your mask, show how much they love you anyway or even because of what they see, and help you feel comfortable enough to remove your mask completely, to say, “fuck it, I am who I am.”
My most obvious example of this is Kyle. Over the early years of our relationship, he peeled back layers of my mask bit by bit, knowing what was underneath but letting me take my time to show him. And now, my god, how comfortable I am around him! We were watching The Mandalorian a little while ago, the episode where Moff Gideon reveals that he has the darksaber, and I shrieked and started flapping my hands, which I never do because I know it’s a weird thing, that even if I have the instinct to do it, people don’t like it when you do it, but with Kyle, it just hit me that maybe it’s okay, that maybe he loves that about me, and he does, and he smiled at me and just said that he knew I’d love that, and that was that.
GOSH I love him.
And I’ve been thinking about it, and I realized that my first intentional unmasking came when I did my semester at Oxford back in 2004. Away from people who knew the masked me, away from anyone who knew the big long plans I had for my life and the narrative strand I wanted my life to take, I felt free to just… be. Not to the extent of flapping my hands excitedly about things, but I went in exhausted, torn down from a shitty relationship right before I left, and basically stripped down to my essentials to a point where I just… couldn’t be bothered. After all, it was only 100 days, and if my housemates thought I was too weird, we’d all be going to different corners of the world after that anyway.
But they didn’t think I was too weird. Pretty weird, I’m sure (I am pretty weird, after all), but they liked me, the me with only the barest of masks on, and the best part about that was how it allowed me to solidify who I am, not just which mask I’m wearing. And since that point, I’ve been a lot less interested in hiding any part of me: autistic, neurotypical, pleasant, unpleasant. I am who I am, warts and all.
I also look back and think about the handful of “ones that got away,” you know, the people with whom you know you could have had something special, that even when you’re perfectly happy in the life you’ve got now, you regret the way things ended. And I realized that the ones that got away, the ones I wish I had actually connected with for longer than a millisecond, they all peeked beneath that mask and tried to let me be myself… and I got scared and ran, because even with that reassurance that hey, I love you for who you actually are, it’s hard to trust.
Because you know, you get people who want to remake the mask into something more to their liking or you get people who trust the mask is reality, but when someone genuinely wants to see what’s beneath the mask before you’re ready, even if they like what they see, you get scared.
Isaac, so far, has no mask. He looks to his brother and sister for information on how he should behave as a person–it’s fascinating to watch in real time–but he doesn’t pretend to be anything other than who he is. And he is an absolute delight of a child. He’s creative and funny and an absolute little shit in the best way possible.
(parents know that when you’re calling your kid a little shit, it’s not because you don’t love them; it’s because they figured out how to do something they weren’t supposed to do in a way that you can’t help feeling a little bit proud of. Like, no, you’re not supposed to have eaten 32 cookies before dinner, but the Rube Goldberg device you built to access the Oreos is technically amazing and I’m sending in your application for Mensa while also sending you to your room)
We call him our little rogue, because we are a D&D family, after all. Sam, with his strong sense of personal rules and tendency to charge headfirst into everything (walls included) is our paladin. Carrie, always performing and able to reduce you to giggles or tears with a single look, is our bard. But Isaac, climbing and sneaking and figuring out every possible puzzle, is our little rogue.
He likes to build and set things up in particular ways. He uses the books in his bedroom to make smaller rooms–setting them up at the foot of the bed or against the wall to make into a room with a door that opens and closes. And sure, he tears the pages out and tosses them around like confetti (we are down to about 3 books that he hasn’t destroyed, save for the older ones that come into the room for bedtime and leave afterwards), but the amazing creativity and cleverness he exhibits to build his own little rooms like that just astounds me.
And then his cars. He’s doing the stereotypical lining up cars thing, but he does it in such a way that the cars all face out of the window through which he watches cars coming up and down our street. And I just flail because what a guy! What a clever little dude! What an amazing mind at work!
We never discourage him from stimming; instead, we stim with him, the whole family gets involved. We turn on his favorite music, and the five of us just rock with him, and he has this HUGE smile on his face because he’s not alone. His family gets him. We’re not going to stop him from being who he is.
I think the fact of him eventually masking is inevitable; even in a more enlightened world, 30 years after I was a weird kid combing her hair with a fork in the first grade, you can only deviate from the norm so much before people start giving you a wide berth. He’ll have a teacher scold him at some point for rocking too much during a test or he’ll get teased for talking too much about cars with another person. He’ll learn to hide those aspects of himself for a while, around people who don’t know him well enough to love him for who he is. And I hate it.
I hope that Isaac understands this: that he doesn’t need to mask around us. That we’ve seen the way he’s made from the very beginning. We know why he does what he does, and we love it about him. Isaac, unmasked, is the person we love and always will.
This month has been here for roughly two weeks, and it’s already established itself as wild, even by 2020 standards, and as a month that nobody understands why it’s here already, as if the rest of 2020 hadn’t lasted for 70 years. But here we are, November 12, and I’m overwhelmed with all of the things I’ve accumulated in my mind this month.
We’ll start with the end of last month.
On October 26, I went in for laparoscopic surgery to see if I had endometriosis and, if I did, remove as much of it as possible. The surgery didn’t make me nervous in the least; when you’ve been through as many cycles of IVF as I have, things like anesthesia or the usual surgery worries kind of roll off you like water off a duck’s back. I was actually kind of looking forward to all of it, because it meant a day where I wouldn’t have to juggle the kids and everything about the house but could just rest and heal.
The surgery itself went about as well as I could hope, though my doctor didn’t find any endometriosis. He did find a non-zero number of adhesions in my abdomen—basically scar tissue glueing my organs together—from a previous surgery, probably my C-section, and he removed those. And honestly, that seems to have done the trick? My only pain right now is from sciatica, which is a BITCH, but the abdominal pain seems to have utterly vanished, and I’m LOVING it. It’s a good step on the road towards eventually yeeting my uterus and ovaries into the sun, because those bitches have been nothing but trouble for me. Couldn’t even manage their biological function without scientific intervention, stab and crush me on a monthly basis for the past 25 years… fuck them utterly.
Even though my adhesions likely came about as a result of my C-section, I’m still glad I had said surgery, and I still look back on it with a lot of fondness. It was a really good experience, genuinely—from it being 100% my choice to the way I was cared for before, during, and after the procedure, I wouldn’t change a thing. But that’s a rant for another day.
So I’ve been recovering from that surgery for about two weeks now. I’m at about 85-90% functional most of the time, though I still get tired way more easily than I did before the surgery. I also have had to get creative with twin parenting, since I wasn’t supposed to pick up anything heavier than 10 lbs for the first two weeks after the surgery, and the twins are much more than 10 lbs. And they’re two, which means they’re getting into EVERYTHING and living life on the edge. Isaac’s latest game has been getting as close to the television as possible, despite the playpen fence we have around it, and my only tactic for dealing with that is to pathetically holler for Kyle until he’s able to come and rescue our son from trying to pick Donald Duck up from the TV screen.
Carrie, meanwhile, doesn’t need to be picked up because she merrily plops herself right in my lap at all times, sometimes to disastrous effect. The other day, I was sitting on the couch, minding my own business, and Carrie pranced up to me and proceeded to throw herself—elbow first—right on top of the incision at my belly button, popping it right open. Fortunately, it’s since closed back up (laparoscopic incisions heal pretty quickly, and I got on it with a bandaid right after), but oy. Recovering from literally anything with one toddler is difficult; recovering with twins is basically impossible, and it’s a miracle that I haven’t been eviscerated.
In the midst of all this, an election happened.
Fortunately, Kyle and I had requested absentee ballots when our state offered them to everyone in light of the pandemic. We voted sometime in mid October, with me telling Sam how important it was to choose political leaders with good character (because we were studying good character in social studies and still are—citizens with good character are respectful, responsible, kind, and honest, per his curriculum). And then the surgery happened, and wouldn’t you know it, I was sound asleep at 11:30 a.m. on Saturday when the election was called for Joe Biden.
Thank God. Like I am not religious, but thank God.
It’s hard to emphasize how difficult it’s been the last four years to raise kids to be proud Americans, to be citizens of character when the leadership in this country was so desperately lacking in it. I imagine it was similarly hard when Bill Clinton was off being a sleaze bag in the 90s (before anyone gets on me for “tribal thinking” or what the fuck ever). You want to tell your kids that character matters, that it’s important to be respectful and responsible and kind and honest, but then you look at the leadership in your country, and the people in the highest offices are the opposite of those things and, what’s more, so many, so VERY many people who voted them in have merrily embraced hatred and spite to the point where they’d rather see their fellow citizens die than listen to them. How can you teach your kid not to be a bully when the bullies seem to have all the power? How can you teach your kid the power and value of respect and responsibility and kindness and honesty when the world seems to reward the opposite?
Joe Biden wasn’t my first choice of candidate, but it’s refreshing to see someone who’s treating their colleagues and fellow citizens with respect, regardless of political belief, who’s responsibly planning his transition into the presidency despite all of the obstacles being thrown in his way, who goes above and beyond to treat individuals with kindness, and who, while not 100% honest, is at least not telling me that my eyes and ears are the ones lying. It feels good to be able to envision telling Sam about the president next year and not biting my tongue.
But I don’t want to dive into it too much, mostly because I just don’t want to deal with the people bitching about this whole thing. They can all go hang out on Pander or Parlor or whatever-the-fuck, and I’ll be over here, sleeping a little bit easier these nights.
And there’s light at the end of the pandemic tunnel! I was already feeling better because of the election news, and then boom, the Pfizer vaccine is over 90% effective. I’ve been reading up on it, and this translates to only needing about 60% of the population vaccinated for herd immunity—how awesome is that? My biggest fear with any vaccine was the sheer number of people who wouldn’t take it—not from justified concerns but because it might give them 5G or something (ha! I wish! I could use a personal hotspot!)—negating its benefits. But here’s another area in which I’m breathing so much easier.
I’ve been thinking so much about what I want to do once things have cleared up, and I think one big thing will be taking the kids down for a three or four day weekend in Philadelphia. It’s educational, what with the Liberty Bell and all; it’s close to Sesame Place, with its autism friendly atmosphere; and I 100% need to find and hug Gritty, avatar of chaos that he is.
And then, I think, a road trip down to Texas again, with stops in Philly and Atlanta. Let the kids see their grandparents again, finally, see more of the country again—GOD, how I’ve missed being outside this little bubble.
The twins are past due for their first trip to Boston, so that’s on the docket. We’ll take them with their stroller, probably down by Quincy Market and the Harbor, and we’ll ride trains to get there. Sam wasn’t old enough to appreciate being on a train the last time we took one into the city, but he definitely is now, and I can’t wait to take him.
We’ll go to the mall again, eat in the food court, get truffles from Godiva, and browse the shops slowly and without worrying how crowded they are. The kids can go to the indoor playground and run around to their hearts’ content; they can go to the new outdoor playground down the street and do the same, no masks or worries.
Kyle and I will have a long overdue anniversary date at the Melting Pot, and maybe another date at Chili’s, not because it’s exactly fine dining but because those are our places.
In September, the kids will all go back to school, Sammy to second grade and the twins to preschool. I’ll have precious quiet hours in the house to write more, to clean up more, to feel my own skin again. I’ll run errands without wondering if I’ve got enough masks or enough clean masks. We’ll go to the movies and eat popcorn and not care if the theater is packed.
(…well. We’ll care a little)
We’ll see our extended family, my aunties and uncles and cousins that we’ve missed since last Christmas. I’ll see my cousins’ new little babies, and we’ll celebrate being together again with Feasts.
(I feel like all of our third generation kids need “cousin crew” shirts for that inevitable meeting)
Sam wants to go to the beach, and of course we will, and build sandcastles and not mind that it’s crowded on a summer day. Maybe I’ll even wear a bathing suit this time. Like, it’s not LIKELY, but it’s possible.
In other words, November has done to me what I never expected any month in 2020 to do: it’s made me back into an optimist, someone who’s looking forward to 2021, not just because it’s no longer 2020 but because it seems like it may bring something good after all.