Somewhere, some judgmental person is like “how can you be so happy about your babies being out of the house all day???” but listen. I have spent the last eight years with someone either on me or in my uterus nonstop. Today, I got to go on a lunch date with my husband without finding someone to babysit for us. When I had to send emails this afternoon (because being a mom of three school-aged children means doing a lot of emailing), I didn’t have to worry that someone was going to get bored with whatever I’d thrown at them to distract them. I could just email and reply, email and reply. I was so fast.
So now I’m figuring out what to do with these hours between 8:00 a.m. and 3:00 p.m. when I used to have to spend 110% of my time making sure Isaac wasn’t bungee jumping from the top of the stairs (that still is a focus between 4:30 p.m. and 7:30 p.m., for the record), and a lot of it boils down to actually taking care of myself.
Anyone who’s raised twins can tell you that it’s a LOT of work. You essentially have to be in two places at once at all times, even more as they get older and more capable of causing problems on purpose (as they gleefully inform me they’re doing several times a day). Your own needs don’t just take a backseat; they get strapped to the rear bumper with some duct tape and you pray they won’t fall off when you hit a particularly gnarly pothole. And when it’s twins, it’s not a societal thing telling you that mom should give up taking care of herself while dad does whatever. If you’ve got a decent marriage, both parents are struggling and dragging themselves across the finish line at the end of every day, wondering how they survived.
And then add autism into the mix, with its superpowers and drawbacks, and basically, I’m amazed that I made it to the twins’ first full day of school without actually being committed to a mental institution.
(note that I did come close, but it was technically a partial hospitalization and it was under extenuating circumstances, i.e., a literal plague, so I still consider it a victory)
This week, self care mostly just looks like having very relaxing days. I was in sleep therapy for a while this spring and summer, and I’m pretty sure my sleep therapist would shit a blue kitten to see how I’m spending this first week with no kids at home. But that would be her problem because I’m sleeping not because I feel like I need to but because I can and I want to. I like sleeping, and I like sleeping even more when I know that I don’t have to worry about my kids while I’m sleeping.
After this week, though, it’s time to really buckle down on the actual self care. Not the forever naps or the eating bonbons or wearing sheet masks type of self care, but actually pulling my body back from whatever hellhole it’s been in for the past two years.
I’d written back in March, when I had time to write here semi-regularly, that I was working on getting a CPAP, and I have gotten one. And I’ve noticed a marked difference in my before and after life, though I didn’t realize the difference until one day, when I didn’t get enough sleep and suddenly, I felt cranky. That didn’t happen before because I was just in this permanent state of exhaustion that never ended, so I didn’t ever feel cranky. I just felt normal.
But then the other day, I didn’t get as much sleep as I had been and had to function on this insignificant amount of time. And I was cranky. I was so upset about everything and I was like ??? what is going on? Until I realized that oh, I was acting like I hadn’t slept because I hadn’t, and boy was that weird. I was so used to getting such bad sleep for so long (roughly 70%-80% of my nights were spent not breathing) that I didn’t know what being sleep deprived felt like anymore because it was just my normal.
So I’ve taken care of the sleep aspect, at least, but a lot of me is still tired. This is partly because I’m still recovering from however many years it’s been that I’ve had sleep apnea and been getting zero sleep. This is also partly because, increasingly, I’ve been dealing with absurd amounts of bizarre pain.
I say “bizarre” because it’s pain that I can’t really explain with anything simple. I can explain my knees and hips and ankles hurting because I am fat. That makes sense to me. I cannot explain why my toe knuckles and finger knuckles hurt pretty much all the time. As far as I know, I haven’t been running around all night like a gorilla, balancing on my fingers, or learning to dance en pointe. My fingers and toes have hurt for the last two years off and on and it’s just very, very weird.
When I spoke to my primary care doctor about it (not intending to, by the way; I went in to speak with her about a completely different matter, and Kyle said, “hey, while you’re there, why don’t you talk to her about your fingers and toes hurting?”), she basically diagnosed me with “being fat” and spent the rest of the appointment meticulously reading through the list of ingredients on the Dr. Pepper I confessed to drinking. Which… yeah, pretty par for the course when you go to the doctor as a fat person. And, mind, I’m not saying that I’m either healthy or not fat; quite the opposite, really, and I know the steps I need to take to improve my situation.
Anyway, my doctor thankfully also ordered bloodwork to check for autoimmune issues, because when you have the symptoms I have (nonsensical joint pain, skin that gets hot when it’s in the same universe as a day over 65 degrees, fatigue even when you’re getting decent sleep), it tends to indicate something autoimmune going on. One of the results came back elevated in a range that, from what I’m reading, tends to be consistent with autoimmune situations, so that’s exciting.
I do not want to have an autoimmune condition, I should add. They all sound wretched. Bare minimum, they sound like a lifetime of pain and medication to do away with the pain that has awful side effects of its own. But I’d also like to know what the fuck is up with my body already hurting. Like my body already hurts; I don’t need an autoimmune diagnosis to make that a thing.
(as to why I never brought it up before, quite simply it’s because between the pandemic and raising three kids with varied special needs, my own needs were, as I said before, strapped to the back bumper with duct tape)
I have an appointment with a rheumatologist in late October, and I really hope that she isn’t dismissive, that she says, “yeah, no, drinking soda isn’t good and you should exercise, but neither of those things should cause your knuckles to hurt like this.”
So in addition to alllllll of that, I’m looking to start exercising properly, now that I actually have free hours during the day. I don’t know when I’ll be doing that exercise, but I figure ~30 minutes a day, 4-5 days a week of moderate cardio should do the trick of getting my heart pumping and my body saying, “whoa, hey, we’re taking care of ourselves now! Neat!” We have a membership at a local community center that I plan to use for that purpose, and that’s something I’ll be doing starting next week.
And in between all of this, I’m also getting my tubes tied. With all the new bullshit laws happening across the country (side note: if you agree with any of those laws, you and I are not going to get along) and with any future children I’d want probably coming from a freezer at this point, tubal ligation just seems like a good option to me. And that is happening on October 3, and I am pretty jazzed about it. Hilariously jazzed, too, considering literally everything I went through to have the kids I do have, but honestly, having power over my own body is a good feeling and one I want to maintain as much as I can, all things considered.
(those things being everything I talked about above)
And I’ve got plans to clean out a whole bunch of stuff from our house and I’ve got plans to write again and I’ve got plans to take my camera out places and and and
Basically, I do, in fact, miss my kids somewhat during the day… but I’ve missed myself a whole lot more.
So when I got my CPAP, I hoped it would kind of be like in Sleeping Beauty where she just kind of wakes up and is beautiful and fine and life is able to go on. I knew from a lot of experiences I’d read that this usually isn’t how things work, that a lot of people who’ve had severe sleep apnea for a while (based on my history, it’s been at least since I was in high school, if not longer) need time to heal their brain and body from being so sleep deprived from so long; but I still hoped that I’d be one of those people who’d get on the CPAP and suddenly feel great and ready to fight dragons.
The first day was like that. I was too awake to go back to sleep after the kids left for school, and I wanted to stay awake, so I drank a Dr. Pepper in the morning (hey. hey. it’s probably less calories than the caramel mocha whatever you get in the line at Starbucks) and that kind of took me from awake to AWAKE. I was hyper. I have never been hyper. I felt like I wanted to be on a trampoline. I cleaned. And then at lunch, I had another Dr. Pepper and stayed somewhat zingy until I went to bed, and that was that. And I hoped against hope that I would be like that every day because wouldn’t that be nice?
But that hasn’t been the case. The first day was like that, but subsequent days have been significantly less so. On the one hand, I think this is because a cold (not Covid, we tested so many times) and allergies have been rolling through our house making everyone snore (especially Kyle, very loudly) and making us all more tired than usual. On the other hand, I do think I have a lot of healing to do because it’s been something like 25 years that I’ve been dealing with this, and that sort of damage doesn’t go away overnight.
I have noticed differences. When I am awake, I feel like my brain is more there than it used to be. I used to have trouble keeping my eyes open at all, but now I just feel “normal” tired, if that’s even a thing. Before the CPAP, it was like I couldn’t sit down anywhere without my eyes trying to close on their own. Now, that isn’t a problem. I still feel really tired, but I’m not falling asleep where I sit, so that’s an improvement. I think. I don’t know, it’s hard to say, since it’s been so long since I’ve actually NOT felt tired that I don’t know what not tired really feels like?
I’m still on pain meds that warn that they cause brain fog, and I definitely still have some of that, but it’s not as bad as it was. I don’t feel like whoever’s in charge of the simulation keeps canceling my actions whenever I walk into the room, and I’m not completely losing conversations mid-sentence, so that’s helpful. I’ve even had the mental bandwidth to start being creative again, mostly with journaling (I do something called “junk journaling,” which is when you basically use stickers and scrap paper and whatever to make your journal look like a beautiful mess); and even though I absolutely do not have the emotional bandwidth to deal with the 72 separate apocalypses happening on a daily basis (do any of us?), normal weeks are back within my capabilities, and that feels better.
I think that’s the gist of it: I don’t feel great, but I do feel better. There’s a noticeable improvement. Everyone’s noticed it in the way I talk, even when I’m really tired. They say that I sound less exhausted, which is accurate. And that’s not to say that I never get exhausted (after all, I still have three kids and a life going on), but it’s not just my constant state of being.
I’m trying to push myself a little. This week, I’ve been trying to go to bed a little bit earlier so that I can get up at the usual 7:15-7:30 wake-up time and stay awake, but it’s a weird balancing act. On the one hand, I don’t mind going to bed a little earlier as a general rule, but on the other hand, I absolutely struggle with revenge bedtime procrastination. I feel like there aren’t enough hours in the day to refill my own emotional cup, and I know that if I don’t do that, the kids will be the ones to suffer for it because I won’t be able to engage with them the way I want to.
Which is, after all, a big reason why I’m working on overall improving myself: to be able to engage better with my kiddos.
The next step is, I think, being more active. We’ve got a membership to a local gym/community center so that Sam can have swimming lessons there (Sam, by the way, HATES swimming lessons), and I want to start using their facilities either in the morning when the kids are in school or in the evening when the kids are in bed. I don’t know, though. Every time I try to start being more active, I end up failing somewhere along the way, and it frustrates me. The times I’ve managed to incorporate more activity into my daily life are times when it wasn’t a choice: when I had to walk ages to get to classes or walk to the store or things like that. Where we live now, walking is just not a thing that can happen. The roads have no sidewalks, and we live on a really steep grade, and while I could absolutely do that eventually, right now, it feels daunting.
As does actually going to the gym.
But I still want to try.
That’s really the theme of it all. I don’t know if I’ll succeed, but I still want to try. I don’t know what the eventual outcomes will be, but I can’t really find out if I don’t actually make an attempt. And the attempt is scary, mostly because of the potential for failure, but. Well.
I’m tired. And I’ve been tired for a very long time.
I don’t remember the last time I got a good night’s sleep, and I don’t say that in an overdramatic parent sort of way. We all have a hard time with sleep and rest as parents–the kids get you up in the middle of the night, you worry about them, they wake up at 5:30 a.m. for no reason. Parenting is exhausting.
But that’s not it.
I don’t mean it in the daily grind sort of way. We get up and commute to work and subsist off caffeine. Our supervisors demand too much of us, and by the end of the work week, it’s all we can do to plop down in front of the TV and binge watch something so that we can have conversations at lunchtime. The capitalism grind is exhausting.
But that’s not it.
I don’t mean it in the school sort of way, where you stay up all night working on a paper or studying for finals and then hold your eyes open with tape the next day and crash afterwards, or where you and your friends are so wired after studying for those finals that you go to Dunkin Donuts at 3 a.m. in weird clothes to try and get whatever coffee and donuts you can to push through. School is exhausting.
But that’s not it either.
Everyone I know has dealt with those exhaustions, so I figured mine was just more of the same. It was easy to write off how tired I was when I was in high school–after all, school started at 7:40 a.m., and I was in AP classes and had extracurriculars and church and friends keeping me out late. And no, it wasn’t preventing me from getting at least 6-7 hours of sleep a night, depending on what I was doing, but of course I was tired then. And then college–the exhaustion ebbed a lot then because I planned my day around it. When selecting classes, I avoided anything earlier than 9:30 a.m. and kept my afternoons free for napping as much as possible. I did stay up incredibly late, but not so much that I wasn’t getting any sleep, and I still needed those naps in the afternoons, every day. But I wrote that off because, well, it’s college. Everyone naps in college. Right?
When I started working a regular 9-5 job, the exhaustion resurfaced. My first job, I had to leave the house at 7:15 a.m., at least if I wanted to beat traffic, and I was so tired that I kept making stupid mistakes on the job: filing things incorrectly, forgetting who told me what, that sort of stuff. Eventually, I left the job to substitute teach for a bit, and I always ended up at schools far away. I’d feel so tired during the morning commute that I’d have to slap myself to keep awake, and then I’d come home and nap as long as I could. I told myself that I was staying up too late or that I just had fucked up my circadian rhythm in college, because obviously, it was my fault, right?
And then I had kids.
And that didn’t help, because kids exhaust a person. At gentlest, they’re a lot of work. I blamed being more tired than the average parents on my being autistic, because all that sensory input and all that socializing at all times of the day forever is a lot. When I was working AND raising Sam, I’d reach the end of the work day and only have the energy to sit on my rocking chair with him and watch TV, to the great concern of both Kyle and Kat. They worried that me having another kid would result in more of the same, but for a hot minute, I proved them wrong. When the twins were little–not infants, but around the time Sam started kindergarten–we had a good time. We played all day, I was very tired but I could do stuff.
And then the pandemic and then my spine and then everyone started school, and I thought I’d be less tired, but here I am.
I’ve tried all sorts of explanations. The medication I’m on for my nerve issues does make a person pretty tired, so I thought maybe that was it, and that getting off the medication would make it so that I could get through my days without a nap again. The pandemic flushed my mood right down the toilet, and I figured that probably was a contributing factor. I had all of these reasons, and they finally came out when I talked to my prescribing RN a few months ago, frustrated that I was losing more than half of my day to sleep.
Because I love naps, but I like to take naps for pleasure. I like taking naps on days when it’s raining outside or crisp and cool or it’s gently snowing. I like looking out my window and letting nature kind of hypnotize me into a nice, relaxing sleep that doesn’t last too terribly long and makes me feel rested afterwards. These naps don’t make me feel rested. I think the last time a nap made me feel properly rested, I was fresh out of college and working just part time and dozing after work.
So anyway, I talked to my prescribing RN with frustration, and she referred me to a sleep therapist, thinking the issue was that I had insomnia. And, I mean. I have had insomnia in the past. We all have nights of insomnia. Most of mine lately stems from achy legs when there’s a front coming through or else the general weight of “ah, neat, living through yet another major historical event.”
BUT THE INSOMNIA WASN’T THE THING, AS IT TURNS OUT. Because my sleep therapist had me keep a sleep journal recording how long I thought it was taking me to fall asleep and how long I was sleeping, and as it turns out, I’ve been getting upwards of 7-9 hours of sleep every night, falling asleep within half an hour, and doing relatively well with the getting to sleep bit. And I’m even staying asleep, as far as I can tell, for most of the night, and that seems to have been the case for most of my life.
So my sleep therapist and I both said, “wtf” and she ordered me a sleep study. I got all these components that I brought home with me and strapped to my body–one for my chest to register whenever I took a breath, one for my nose to register when air was coming in and out of me, and one for my finger to measure my pulse and how oxygenated my blood was throughout the night.
AND WOULDN’T YOU KNOW. It’s not insomnia. It’s not me being lazy. It’s not me staying up way too late or being unable to handle life. It’s severe central sleep apnea, and it’s probably been with me for a very long time.
This isn’t the sleep apnea that you get when your tongue blocks your airway or your neck is just too heavy to keep your airways open. This is the sleep apnea you get when your brain forgets to tell your body “hey, maybe we should keep breathing” while you sleep. Rather than choking and gasping for air as your airway gets blocked by your tongue, and rather than being fixable with just losing weight or wearing a mouth guard, you just stop breathing.
Which is bad.
Moderate central sleep apnea happens when you have around 30 incidents of not breathing in a one hour period. The night I was monitored, I had 40 incidents, and my blood oxygen dropped to 79% (which is, for the record, REALLY BAD). The pulmonologist I saw after and my sleep therapist both told me to really push the sleep center to get me in as soon as possible so I could get a confirming study that would also see what kind of titration (read: forcing my body to breathe when it doesn’t do so on its own) works best for me.
A lot of people with sleep apnea do well with a CPAP machine, which forces air into your lungs at a steady pressure (set up during that in hospital study to see what pressure you need to just keep breathing while you sleep). Other people do better with a BiPAP, which forces air into your lungs at a harder pressure when you’re inhaling and a gentler pressure when you’re exhaling. And then there’s an ASV, which is a BiPAP that learns your breathing patterns and adjusts accordingly. And it’s all very complicated but necessary because my body cannot do this one very basic thing that it should’ve been doing consistently since I exited the womb.
I’ve got options, basically. And I’m looking forward to them on one level because I am so TIRED of being TIRED. It really is just an emotionally exhausting thing to be this tired all the time; you want to do so much and BE A PERSON, but you only have enough energy to exist. Even the things that are usually fun fall short because you’re too tired to put in the effort you want.
But then I’m also scared because I’ve been this tired for so long that I don’t know who I am without this permanent exhaustion that feels bone deep. Am I going to turn into some sort of raging dictator who’s angry that not everyone is on my level of dragon slaying awakeness? Or will I just be the engaged and clean mom I’ve wanted to be for a while? Will I finally be able to kick my own ass into actual activity or will I just say “nah” and remain a blob but this time able to focus on things?
And THEN I’m frustrated that it’s taken this long to recognize that it’s a problem because I kept dismissing my own health issues and had them dismissed by everyone around me. Of course I was tired, high school and college are hard. Of course I was tired, I was going to bed at 10:00 every night instead of 9. Of course I was tired, I had hobbies outside of work. Of course I was tired, I had a baby and then two babies. Of course I was tired, I was working and raising a kid at the same time. Of course I was tired, there’s a pandemic on and also I’ve got a spinal injury and depression. Why wouldn’t I be tired? Or maybe I wasn’t tired, maybe I was just lazy. Maybe it wasn’t that I couldn’t physically muster the energy to clean and roll around on the floor with my kids and go for a walk and have hobbies and a life. Maybe I just didn’t want to put in the effort. Maybe I preferred to just dick around on my phone because effort is bad, and after all, I am just a lazy Millennial with a rebellious streak or something.
I internalized all of that. And when I think about how that kept me from actually getting diagnosed and treated for so long, it scares me and enrages me. My level of sleep apnea is so severe that it can cause brain damage and seizures; somehow, I’ve gone this long without that, but you can only stay lucky for so long. Since I found out the results of the study, I’ve been afraid to sleep because I know that it’s entirely possible that this would be the night I’m not lucky.
And I’m furious that my exhaustion has been so easy to dismiss for my entire life, as me just being “low energy” or “lazy” or something along those lines. That it never occurred to me that anything about it was abnormal and that it was so easy to say, “oh, that’s normal.” It’s like when I had my gallbladder issues after Sam was born; I found it so easy to dismiss the 11/10 pain because the postpartum time is supposed to be painful, aches and pains are normal after you give birth, etc.
But that wasn’t normal. And this isn’t normal. And I don’t know what it is about me that makes me so ready to dismiss real medical problems that I have, but I do know that I feel vindicated that I haven’t been lazy my entire life, that I may very well be able to handle working and having a kid and having three kids and having hobbies and writing and exercising and all of that.
I’ve just been fighting with both hands tied behind my back.
Well, no. It’s busy but it’s also not. It’s fallen into this nice routine but I’m tired all the time, which is unpleasant and probably the fault of the nerve medication I’ve been on for a year at this point (more on that in a minute), but it also means that by the time I reach the end of the day, I’m a noodle who isn’t very good at writing things. And I have so much to update on and so much to talk about but again: noodle, living in a constant state of no bones.
The kids have been in school in person for coming up on three months now, and it’s mostly been a pleasant time. We’ve had… mm, I want to say three Covid scares? Two that were everyone and one that was just Carrie. It’s a weird thing because I don’t like to send my kids into school sick anyway, but now in the time of Covid, you can’t just not send them to school sick, you also need to get them tested. And I am okay with that, just so we’re clear. It’s a pandemic, kids have only just started to get vaccinated, and I’d rather know one way or the other.
BUT it does take a day home with a head cold to five days home because we couldn’t get in to get tested until 12 on Wednesday so the results aren’t back until 10 on Friday, so we’ve missed the last three days of the week plus the weekend, and by that point, all three children have gone completely feral and are jumping from couch to couch to couch to couch while scream singing “Grace Kelly” by MIKA.
Thankfully, our school has recently implemented a “stay and test” option for people who are just close contacts, but that does nothing if your kid has the vague “maybe it’s a cold or hay fever or Covid?” symptoms, so we just check everyone’s temperature in the morning and get really caught up in the mitigating circumstances of each and every symptom (e.g., our kids are hot sleepers, so if one seems warm but they were in bed all night, we wait another hour after they get up before doing a temperature check).
Kyle and I are both triple vaccinated, so even with ominously named variants popping up all over the globe (seriously, if they’d just gone with Omicron from the start, I feel like this entire pandemic would’ve been taken a lot more seriously. Like I’m not saying that Covid isn’t a threatening name except it very much is not a threatening name), we’ve both felt comfortable and safe enough to go to the movies again and go out to dinner again and mostly resume our normal lives, sometimes with masks and sometimes not. And despite the handful of Covid cases in our schools, both of us feel pretty safe about our kids being back in person (and all three have IEPs, so even if schools went remote again, they’d end up taking the in-person option anyway, whee).
Being back to school in person has benefitted Sam so very much. We weren’t sure how he’d take to it, since it was a full year away, but the phrase “like a fish to water” comes to mind. He picked up right where he left off with his best friend Hunter, and he’s made new friends (Declan and Eamon) in his class. His teacher has nothing but good things to say about him, even taking into account his reluctance to put away his scissors sometimes and his adorable motormouth tendencies. He comes home constantly with stories about the games he played at recess (apparently, Among Us is popular with the kids these days, which… okay, cool, it’s literally just Mafia, but cool) and the time he spent with his friends, which is enough to make my heart feel warm and mushy, but THEN you add in that he got the highest scores on their classroom testing in math and ELA and I’m just. Beyond proud. Is there a way to be beyond proud, because that’s me. I’m beyond proud.
I also feel a weird sense of pride because, as it turns out, Sam is also autistic.
Roughly around this time last year, his therapists asked us if we’d ever had him tested, which we hadn’t. Sam and Isaac are both similar in that, while they’re both definitely autistic, they’re also both really social kids. They like to make friends and be involved with other people, but where Sam was in daycare from the time he was a year old, Isaac was home with me. Isaac was also notably delayed from the start because he was a preemie, whereas Sam would’ve just stayed in for the next ten years if the doctors had let him.
Anyway, we didn’t ever have Sam evaluated for autism because he’s such a social kid, and he learned from very early on that socializing means eye contact and it means language and it means doing things that autistic children typically aren’t seen doing. He had his pickiness sometimes and his need for routine, but we figured that was just typical toddler stuff.
And then the pandemic.
And a fun thing with neurodivergence is that when those of us who fall under that umbrella get stressed, we don’t mask as well. Our divergences become more and more apparent, and as a result, people start to notice.
The pandemic was stressful for everyone, and it was particularly stressful for Sam, who had his routine and life upended overnight and never quite found his footing again. Early on, we had him seen by one therapist who recognized that he has ADHD (both inattentive and hyperactive type, because we like to cover all bases here), and once he started receiving in-person therapy, his new therapists agreed with that and said that he also seemed to be autistic.
It took a whole goddamn year to get him an evaluation because everything is absurdly backlogged and you can’t do an autism evaluation virtually. We went for the first available slot in Boston, and an hour and a half later, the doctor said, “Yep, autistic” and sent us on our merry way with a bunch of emails and links and information and suggestions about therapies and what-have-you.
And, real talk, Sam is excelling so much in so many ways that I’m not super interested in pursuing therapy unless he asks for it. Talk therapy, sure, because I think that helps a lot with a lot of things. But ABA (gag)? Anything besides the OT he already gets? Nah. I think he’s doing pretty well on his own, and the diagnosis mostly just gives us a tool and a shield that we can use to say, “okay, because of this diagnosis, you cannot deny him services.”
(not that our school district WOULD HAVE denied him services, but just in case)
Anyway, he’s doing SO well that we’re actually shifting his services to an “as needed” basis, meaning that he’ll still have the help if/when he needs it, but he’s transitioned so smoothly and is doing so well that we don’t need to force it on him. And my god, he’s happy again. Last year, it was like a cloud over him, but this year, the sun’s back and it’s so beautiful.
My health is also on the docket of things to talk about. A year ago this weekend, I was in the ER with nerve pain so bad that I couldn’t do anything but scream and shake, and in a logical world, they would’ve pushed me through getting an MRI and surgery ASAP because nerve pain that bad is a major red flag for nerve injuries that could become permanent damage.
I got sent home with meds, celebrated Christmas and New Year’s, then saw a doctor in January. The doctor said it sounded like a herniated disc but I’d need an MRI to be sure, but the next available MRI appointment wasn’t until March. I would’ve taken that appointment, but it fell on the same day our insurance rolled over from one to another (not that the new insurance covered the MRI anyway?), so the MRI got pushed out to late March. Then I saw the doctor again in April, and he gave me the option of either getting injections to ease the pain while the nerve healed or having surgery. I said I wanted surgery, so I got to see ANOTHER doctor in May, and we scheduled the surgery for July.
So it’s already been eight months with this injury and things not really getting better, right? And then Kyle’s company laid off his entire department literally two weeks before my surgery and we had no insurance, so I had to postpone the surgery to August. And THEN we were in this kind of song and dance with MassHealth, where nobody was really sure if we’d be able to stay on it once Kyle received his unemployment payments (note: we still have not received unemployment payments), so we postponed the surgery indefinitely until Kyle got a new job and we were on that new insurance.
September rolls around, and Kyle gets his new job and good new insurance, some of the best we’ve ever had. I call to make a new surgery appointment, but first, I need a new MRI because it’s been, at this point, six entire months so who knows what’s going on in there? And I pay roughly the same for the new MRI that I did for the one with the shitty insurance, but whatever, right?
Within 24 hours, the doctor calls me back and says, “hey, you have zero herniation left. I’d do surgery on you, but it would be pointless because there’s nothing to remove. All you have to do is just wait for the nerve to no longer be inflamed.”
To get a clearer picture, I ask, “But what about the fact that I cannot feel anything on the inside of my left thigh and also at least two and possibly three of the toes on my left foot take a good thirty seconds more to get the message that I want to move them than the rest of my foot?”
“Oh, well, those are probably permanent, but in 90% of cases, the pain goes away completely within a year of pressure coming off the nerve.”
SO LET ME GET ALL OF THIS STRAIGHT. Because of insurance issues, I had to wait and wait and wait and wait on my surgery to the point where I’ve now been left with permanent damage and pain that has an okay chance of disappearing completely but nobody is really sure when that will happen?
I’m on this nerve medication, gabapentin, that makes the world completely fuzzy. I’ve been on it for a year. You’re not supposed to be on it more than a few weeks because it makes you sleepy and messes with your memory (not permanently, thankfully, just while you’re on it). I don’t know when I can come off it because I don’t know when my herniation stopped pressing on the nerve because I had to keep putting off the surgery again and again and again.
And like. I don’t want to get into it about universal healthcare, but I’m pretty sure that my waiting would’ve been cut in half if I hadn’t had to change health insurance five times in the last year.
Whatever. I have an appointment on December 13 to talk to the surgeon and discuss my options. I want to see if I can get hydrotherapy of some sort to try and take some pressure off things, and I really just need to find a decent and quiet gym and go there in off hours to walk and slowly bring myself to a healthier level of activity. I’ve been in so much pain the last year (and still am sometimes) that activity feels daunting, but I need it to heal, and I need to find a way to do it that won’t scare me away.
Meanwhile, I’m just keeping myself in a floating state of planning mode. Planning Halloween (Sam was a ninja and the twins were Spider-Man and Ghost Spider). Planning my birthday and a trip with two of my best friends to Cape Cod in the off season (was delightful but also very cold). Planning Christmas. Already thinking ahead to the twins’ birthday. Planning road trips. Planning planning planning.
Planning that extends kind of far out as well, but only kind of.
Kyle’s new company has some really great insurance, you see, and through it, we were able to cover PGS for our remaining embryos from the cycle that gave us Isaac and Carrie. Unbelievably, six of the seven embryos were healthy and there are exactly three boys and three girls.
Which brings us to the age old question of WTF are we going to do with all of these frozen babies?
I want one more. Not twins, please god not twins. I love the twins so much, and about 50% of the time, I love that they are twins (the other 50%, they are beating the ever loving shit out of each other for reasons that I do not understand, so I’m like, why couldn’t you be born one at a time so we’d have some buffer space?), but I physically could not do twins again. But I’d love one more girl as a coda.
BUT not for a while yet, if we did. Kyle isn’t fully onboard, which is fair because the twins are a LOT right now, and if someone dropped a baby in my lap right at this second, I’d be like, “WHY DO YOU HATE ME SO MUCH????” because I cannot infant right now. If we went ahead with one last transfer, it would be in 2023, no sooner. Too much is going on in 2022, and my health isn’t where it needs to be.
But it’s on the table now, and we didn’t know if it was on the table before. It was a daydream and now it feels like it could happen? I don’t know if it actually will, but it’s there. One last girl.
I mean to write about this every time a new abortion law gets pushed through somewhere, but I always end up chickening out for whatever reason (well. No. It’s not for whatever reason, it’s because I’m tired of discussing it with people who are coming from a position where their sky is a different color than my sky, so we can’t really talk about the conversation on even ground), but I’m tired and I’m headachey because of ragweed and Texas is being terrible, so let’s dive in tonight. This is the story of how I became pro-choice.
Because, you see, I wasn’t always pro-choice. I grew up in a moderately conservative Christian church (i.e., they didn’t make all the girls wear long skirts and prevent women from preaching, but they were Bible literalists and whenever I bring up things about my churched upbringing to people who didn’t share it as if they’re normal, I always get raised eyebrows) in the Nearest Moderately Sized City. Since it was the 90s, there weren’t a lot of major political issues for churches to get up in arms about besides abortion and who Bill Clinton was doing, and the former was easier to protest than the latter. Some subset of people from our church and other area churches would go stand outside the City’s Planned Parenthood and hold signs like “Abortion Stops a Beating Heart” and “God Forgives” and things like that. Never anything distasteful like “Abortion is Murder” because they didn’t want to be Like That, and they had to stand a not insignificant distance from the entrance because of the way things were set up, but the protests happened with some regularity.
I never attended one myself. My mom went a few times, I think, but I don’t really remember. I just remember that they happened, and I remember my earliest understanding of abortion was that it was killing babies (my understanding, not necessarily reality), and to my eight- or nine-year-old brain, that was ghoulish at best, and that understanding persisted well into my teenage years.
In high school, I was happy to play the Conservative Christian Girl role wherever I happened to be, though my views most frequently ended up challenged in history/government classes and English class. I went to See You At the Pole and prayed with people before drama club performances and had my purity necklace on and didn’t go on dates until I was 16 and didn’t listen to secular music or read Seventeen magazine, and I was against abortion. I had a little pin on my purse about it, a pair of tiny feet that were supposedly the size of a fetus’s feet at something like 8 or 9 weeks’ gestation. I liked it a lot because it gave me a chance to be like “I believe a thing” without being alienating; if someone asked me about the feet, I could explain it, but it wasn’t the same as having a huge red button on my purse that was like “I AM AGAINST ABORTION IN CASE YOU WERE WONDERING.”
College was really where things started to change, though probably not for the reasons a lot of more conservative people would expect (especially in a lot of churches–and other people from super conservative circles can back me up on this–the fear tends to be that higher education will brainwash a person to become a liberal. In reality, you’re just suddenly exposed to viewpoints and backgrounds that differ from your own while simultaneously, your prefrontal cortex stops being underdeveloped and catches up to your amygdala… eventually). I went to a small Christian college, so I wasn’t really confronted with a whole lot of people who were pro-choice there; if anything, most of us existed happily in our little anti-abortion bubble.
Instead, I was confronted with people who were even MORE conservative than I was, telling me things that I knew weren’t true. I remember one time, a friend spotted my birth control pills (which I’d been on since I was 16 to control severe menstrual cramping, something I didn’t realize at the time was caused by my PCOS) and was appalled that I had medication in my possession that could cause an abortion. I responded that (a) you kind of need to have sex to get pregnant and you kind of need to get pregnant to have anything aborted; and (b) what. Birth control pills, I explained to her (as had been explained to me by my mom, by my doctor, by everyone ever, because it’s how they work), prevent ovulation, and if there’s no egg, there’s nothing to get fertilized and aborted. To which she responded that yes, they usually do that, but sometimes, an egg gets through and SOMETIMES that egg gets fertilized and then it gets aborted.
(please remember this because I’ll come back to it later)
And it’s weird, because I’d been debating religion and politics online and with friends in person for 2-3 years at that point and had been confronted with all sorts of ideologies more liberal than my own, and those had never come close to swaying me. On the other hand, having someone more conservative than I was come along and say something blatantly false about an issue I’d studied in depth made me feel… well, more than a little confused. I can’t say why now, any more than I could then. It just made the whole movement ring a little less true for me, like if they’re lying about this, are they lying about anything else?
Senior year of college, we all had to take a course on ethics that was… well, I’m not sure what it was designed to do in other years, but during my senior year, it was supposed to teach us to form our own ethical opinions outside of what the people around us believed and taught (which, honestly? Pretty good for a small Christian college to teach their students to think for themselves). The final project was to be a ~15 page term paper discussing both sides of one of the ethical issues we’d discussed over the semester and coming to our own conclusion about it. And, like roughly half of the class, I chose to do my paper on abortion (the other half did gay marriage, which had been legalized in Massachusetts the year prior).
The trouble was that while the school said they wanted us to think for ourselves, they didn’t allow us access to resources that would give arguments for opinions outside the Christian status quo. I don’t know what people doing their papers on gay marriage found, but whenever I tried to search the internet for accurate information on abortions (which should’ve been easy, even in those Wild Wild West internet days), I was blocked from accessing those sites. The school library was no better–they had exactly three books talking about abortion, and all three were checked out well before I even got there. And, yeah, I probably could’ve half-assed a paper about abortion without doing any real research for the pro-choice position, but I wanted to be honest about the other side (I said to myself, remembering the birth control incident), and I couldn’t do that if I couldn’t even access real information about abortion.
Around the same time, I read an article in one of my parents’ Christian magazines about a young woman who’d gone to a Planned Parenthood and apologized to its workers on behalf of Christians and realized in doing so that, hey, Planned Parenthood wasn’t some awful place where babies were being torn limb from limb and then devoured by a demon in the back room (which, like… that seems like a duh thing now, but when you’re in the thick of it, they tell a LOT of lies about what happens at Planned Parenthood, and demon buffets seemed about as likely as anything else) (also Jemila Monroe, if you ever Google your name again and find this, hi! Hope you’re doing well!). And that basically gave me the skeleton for my own term paper: I would go to Planned Parenthood, get information straight from the source, and come to my own conclusions.
And, well. I didn’t come away from the term paper fully pro-choice, but suddenly, the anti-abortion side of things seemed a little less… right. None of the horrors I’d expected from a Planned Parenthood had actually been there (and I know my experiences aren’t universal, but other than the necessary metal detector, it was one of the nicer medical facilities I’ve visited). They had information on adoption, abortion, parenting, all the options someone could choose. The girls at the front desk were friendly and sympathetic (though I’m sure also skeptical when the friend who went with me and I remarked that no, neither of us were pregnant, we just wanted to get information on abortions for a term paper, and no, we couldn’t just find it online because our school blocked every website that gave accurate information on it). They seemed to have resources there for people no matter what they chose, while the anti-abortion side didn’t seem to have many resources at all and also seemed to be teeming with people who were against social supports and sex education and birth control and all the things that would prevent anyone from ever having to consider an abortion in the first place.
It made me think a lot.
The true clincher, though, was my own struggle with infertility and both of my pregnancies.
When Kyle and I first decided to try and start a family, I had what’s called a chemical pregnancy. It’s basically when an egg is fertilized but doesn’t implant for whatever reason. It’s absurdly common, and the only reason I knew it happened was because we were trying to get pregnant and I happened to take a pregnancy test super early (factoid for you: the most sensitive pregnancy tests can detect the pregnancy hormone, HCG, at about eight to nine days past ovulation, which translates to a little over three weeks pregnant; but that said, nobody is peeing on those tests if they’re not obsessively trying to get pregnant). If we hadn’t been trying to get pregnant, I would’ve assumed my period was just a week late, whoops.
After that, months went by, and I still didn’t get pregnant, and I consoled myself during this period by latching onto conception, pregnancy, and delivery as an autistic special interest. Anyone who knew me at all during that time period knows that I was up to my eyeballs in literature and websites and videos and, hey, did you know that Richard Armitage narrated a documentary about getting pregnant, and hey, did you know that humans form butthole first, and hey, did you know that the natural birth movement really took off in response to the twilight births of the mid-20th century and hey hey hey
Understanding fetal development did a lot of cement my pro-choice position, which I’d casually started to adopt in the preceding years. Since most abortions take place within the first trimester (and, really, within the first twelve weeks, which isn’t even the full trimester), it was kind of hard to argue for personhood when I knew that scientifically, a fetus isn’t all that developed at that point. Up until eight weeks, it’s technically not even a fetus–it’s an embryo–and organ systems aren’t even fully developed until around 12 weeks. The brain itself takes a long time to develop, which makes sense when you consider how big and complex the human brain is; the neural pathways that distinguish pain aren’t even developed until around 26 weeks, so previous arguments I’d heard about fetuses screaming in pain as they were aborted clearly couldn’t be true.
(never mind that you have to breathe to scream… which you can’t really do when your lungs aren’t developed, which doesn’t happen until ~23-24 weeks anyway!)
Being pregnant myself cemented things even further. I didn’t even have a terribly rough pregnancy with Sam–ICP and elevated blood pressure towards the very end, but I was overall healthy. But BOY was I miserable. I can say confidently that my body is very good at building babies–but that it absolutely cannot multitask while doing so. A lot of the things I’d heard about pregnancy being the healthiest time of a woman’s life also seemed untrue, or at least like things my body hadn’t been informed of (like why was the alleged energy surge of the second trimester more of an “oh, I can stay awake past 9:00 again, but I still want to be asleep by 10, neat” instead of the “ALRIGHT IT’S TIME TO CLEAN YEAH” I was promised?).
And I thought: could I really force this on someone who didn’t want it? Because the usual response to “look, some people don’t want to parent” is to say, “well adoption, duh” (never mind that adoption is not as simple as that, but we’re not going into that right now), but that doesn’t consider that while some people have really great pregnancies where they feel fantastic all nine months, others among us have absolutely miserable times, where this gestational period is nothing but a means to an end that we’d fast forward through if we could.
(and yeah, cool moments like feeling your kid kick for the first time are cool, but they do not in any way make up for the inability to sleep from about 25 weeks on, the heartburn, the nausea, the aches and pains that are sometimes downright debilitating, the restless legs, and alllllll the complications out there)
AND THEN came my attempts to get pregnant with our second child, attempts that would eventually result in the twins, and I got to experience an abortion procedure firsthand.
See, the first IVF cycle we had was technically a success, but I had a miscarriage, and rather than suffer through the pain of miscarrying naturally, I elected to have a dilation and curettage.
And admittedly, in my procedure, there wasn’t much of a fetus to remove because I was only about nine weeks along when the miscarriage was confirmed (really, it probably happened closer to seven weeks), but again: most abortions happen around that time as well. There’s not much in there to take out, and in the case of an abortion, medication stops the fetal heartbeat before any procedure takes place, so the whole argument of them tearing a squirming fetus limb from limb doesn’t even work because it’s already dead by the time the lamina are inserted into the cervix for dilation.
(and like. You can’t really sell fetal organs on the black market because they just aren’t developed enough for it? Like cool, you’ve given me this glob of tissue that may have someday developed into a liver, what am I supposed to do with this)
When we had the fetal tissue tested, we found out that it had a chromosomal abnormality called trisomy 16, which some fetuses can have and continue to develop up to a point, but it’s absolutely not compatible with life. What were we to do with that information, if that fetus had continued to develop and we’d only discovered much later on that it would be born horribly malformed and not survive even a minute outside of me? I don’t think my emotions could’ve handled going through with an entire pregnancy and delivering a still baby. I don’t know how the people who do suffer that kind of unimaginable loss survive it.
We also had to confront the idea of abortion when it came to the thought of how many embryos we would end up with as a result of IVF. It’s all well and good to sing a song of let’s keep all six sprillion embryos that have ended up implanting (and we were fortunate enough to have very ethical doctors who had a strict policy against transferring more than two embryos at a time… good thing, too, when it came to the cycle where we eventually succeeded because yikes), but doing that runs a very real risk of losing all of them… or losing your own life.
I’ll be honest: even if I were in a position where I’d have to terminate a pregnancy to save my own life, I would have a really hard time with it. As exhausted as it leaves me sometimes, as stressful as it can be, benign a mom and raising my kids is one of the greatest joys in my life, and if I could do it healthily, I’d gladly have whatever children Kyle and I conceived accidentally or otherwise.
But my life isn’t another person’s life. Kyle and I are in a fortunate and comfortable position (more on that next week) with a lot of support if we ever need it. Not everyone is so fortunate. And just like I don’t want anyone to force something physically, emotionally, and financially difficult on me when I don’t want it, I can’t abide by forcing people to go through with pregnancies when they don’t want them; nor can I see a good, objective, scientific argument for doing so.
Personhood is not something that can be scientifically proven, and even if it were, it would be difficult to argue that personhood objectively existed in a first or even second trimester fetus, as their brains just aren’t well-developed enough; therefore, you can’t argue that a fetus is a person with rights because that simply cannot be proven and, if it could, would likely be something proven for a time well past what most anti-abortion groups find acceptable. Physically speaking, pregnancy is essentially giving up one (well. All, really) of your organs for 40 weeks, something that’s great to do willingly but not something anyone wants forced on them. It’s kind of like donating a kidney, even if you could get it back after a few months: a lot of people are perfectly willing and even eager to donate an organ for someone else to use, but nobody’s very happy to wake up in a tub full of ice with a huge scar on their side.
I don’t like abortion. I don’t think it’s a position anyone should find themself in, but we know from history that criminalizing abortion doesn’t result in fewer abortions but rather in the same number of abortions, this time performed in unsafe illegal conditions that kill people. Other countries with lower abortion rates aren’t the ones where abortion is illegal but rather the ones with strong social safety nets, universal healthcare, comprehensive sex education, and a general societal value placed on people rather than on control.
So that’s how I came to be where I am today: I started to realize that a lot of what I’d thought about abortion was simply untrue, came to understand both fetal development and abortion procedures through personal experience, and had rough enough pregnancies that I wouldn’t want anyone who didn’t want to be pregnant to go through what I did. And at the end of the day, nobody has to agree with me or any of this; I just hope some of what I’ve written makes you stop and think for a moment.
The other day, I realized I hadn’t written anything the entire month of July. 31 days, no writing, just me buckling in and holding on for the month. And it’s been a month, but it’s been a month where comparatively little has happened, so it’s not like I have a whole lot to talk about overall.
We left the month intentionally empty because I was supposed to have my spine surgery on July 1, which would’ve had me still recovering for the rest of the month and then slowly being able to sit up more and more again and eventually getting my life back, BUT that hasn’t happened. Instead, July was nothing but rain and nothing, over and over again.
I don’t mind the rain. I overheat so easily for so many reasons, and having nothing but rain all month was nice. But despite going on several dates with Kyle over the month of July and despite leaving the house with some regularity, it felt like the month just existed in a limbo of not giving a fuck. And then that ultimately cascaded into me giving too MANY fucks at the very end of the month for a variety of reasons, which is all to say that I spent a lot of last weekend crying and getting a headache from doing so.
It’s basically that whole tripping at the finish line feeling about the pandemic combined with me letting the stress of Kyle not having a job get to me. For the latter, I’m not surprised that Kyle isn’t employed yet because even in the best of times, finding a job takes a minute. And he’s had a LOT of nibbles and basically hasn’t gone a week without half a dozen interviews or technical screenings or what-have-you. But, you know, you try to keep a smiling face despite things not exactly being great and eventually, things are going to crack somewhat. And I cracked. And I’m fine. Sort of. Probably not that much.
My therapist has basically been pointing out to me that I’m treading water right now. Three special needs kids at home, very little break for them from anything. Husband out of a job. Bills coming due. A pandemic (on that point, I am so very sick of catering to people who are so afraid of science that the idea of science helping them is a completely foreign concept) that seems like it will never end. My own health being on the back burner for the foreseeable future.
Yeah, that’s a fun one. When Kyle lost his job, we lost our health insurance. We signed up for a different health insurance through the state website, but shortly after getting on that health insurance, the state called to tell us that no, actually, we had to be on basic bitch state health insurance instead, and that unless we choose the correct basic bitch program through state health insurance, we can’t get actual healthcare for the foreseeable future. No surgery to fix my back, no primary care, nothing but emergency care, but at least we’re covered for that?
Oh, and if that wasn’t enough, if Kyle ever gets an unemployment check (yeah, still haven’t received those, don’t know what’s going on there), we’ll have to report that income to the state and switch health insurances again, but at this point, we’re probably not going to get any unemployment checks until roughly January. Which nobody knows really why. In theory, it’s because Kyle’s previous PREVIOUS employer (not the one from which he got laid off in June but the one from which he got laid off LAST YEAR) needs to confirm to the unemployment department that he’s been laid off from them for a year, but I just???
Like we’re really fortunate to have family helping us through this stressful time, but if we didn’t? Are we supposed to wait for the whims of enormous corporations to ensure that we can put food on the table?
(if anyone was wondering, being on unemployment SUCKS, nobody would do this unless they had to, if you think they would, maybe go read something outside of your own echo chamber for five minutes; also if anyone was wondering, that we don’t have universal health coverage that’s not tied to employment in this country is frankly barbaric)
SO ALL OF THAT TO SAY that I put my surgery off AGAIN. It’s been bumped to at least January now because I can’t imagine trying to get through the beginning of the school year and the potential beginning of a job for Kyle while stuck flat on my back recovering. It’s definitely the best decision, but I feel angry and frustrated and stuck. I want to do so much and there’s so much that could improve my physical and mental health, but I’m so afraid of triggering that severe pain again before I’m in a place where I can have surgery to repair it, so I end up being a lump on a log, which really just makes everything worse.
Hence the treading water thing. Hence the not writing. Maybe I’ll have more to write about later. I don’t know. But right now, I just feel so drained and angry and stuck that it’s a more exhausting experience than it should be.
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.
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.