There’s something to be said for normalcy in one’s life.
I don’t push myself or my kids to conform to society’s ideas of normality, mind. I’m gloriously weird, my kids are gloriously weird, our family life doesn’t reflect what a lot of people would consider “normal,” but all of that said, we have our own beat of normal that we’ve been missing for a long time. It was missing for a variety of reasons–summer vacation, Covid, Kyle being out of work–but at long last, I can say with some confidence that it’s starting to come back.
For one thing, all three kids are in school now, finally. The twins started back in the spring, because they aged out of early intervention services, so it was less of a huge transition for them. Other kids in their preK class started the school year with tears and clinginess, but the twins just marched right on down to their classroom like they owned the place. Even in the spring, school was just so good for them overall. Carrie went from babbling a lot to actually using words more often than not (which we expected of her–she loves to use words and speak in complete sentences when she knows how, and school helped her refocus those abilities somewhat), and Isaac has done the same (which is huge for him–he actually answers questions without being fed options now, and that’s amazing) (and an addendum: if he just didn’t want to communicate verbally or if he wasn’t comfortable doing so, I wouldn’t push it on him, but he’s made it more than apparent that he LOVES to talk with us and communicate verbally, so I’m happy to encourage it). They’ve made friends and are comfortable with the routine they have at school, and I love to see it. They’re also so much calmer when their days are in this kind of routine, which I love to see for other reasons (like my own sanity).
And Sam started back at school, which is fantastic. Yes, Covid is still raging, but our schools have fantastic protocols in place, and after the stress of last year and knowing that Sam has ADHD and is likely autistic as well, I wanted him to be in a place where he could receive the accommodations he needs rather than struggling with me at home. His friends are all in school, and that has been huge for him–he’s not alone anymore, and I can see just from that how much happier he is. And that alone does my heart a world of good.
He’s receiving special ed services this year, too (which means I have three IEPs to keep track of, and as any parent of a special ed student can tell you, that is basically a full time job except you don’t get dollars for it), and that’s been great. His accommodations aren’t super complex, like he doesn’t require a constant aide at his side or anything, but he does have accommodations: he gets to work with a special ed instructor every day of the week and on his English/Language Arts lessons, and he’s got the special ed instructor around daily to make sure that he’s doing well. His teacher is also aware of his accommodations and will let him step out into the special ed classroom if he’s getting too overwhelmed by things, which will be good for keeping him from melting down in class.
I love his school’s philosophy on so many things. Their view of writing is that kids should be able to write about whatever they want in order to develop their writing skills and narrative voice, which I hope helps Sam as much during the school year as it helped him over the summer (when he would write five chapter long stories about the cardboard spaceship he built, and those stories were and are wonderful). They’re sensitive to each kid’s needs, and while that shouldn’t be a “wow this makes them stand apart from the crowd” thing, it kind of is, and I’m glad they’re standing apart from the crowd like this instead of in a bad way.
So the kids are back in school, and that routine is getting back to something like normal. It means that mornings are just me and Kyle, which hasn’t been the case since 2013, and that’s pretty wonderful in and of itself. The house is quiet except for the sound of both of us typing and someone quietly talking about the weather on TV, and maybe Kyle on a work call…
…which, oh yes. Kyle got a job.
It’s a fun sort of story. He’d interviewed with this company last year at the suggestion of one of his old managers who currently works there. They didn’t have a position for him then, but they promised to keep him in mind if anything else came up. Nothing did in the fall, and Kyle started his most recent job then only to be laid off in June. And it was the whole song and dance of applying to companies, having companies say, “mmm, thanks but no thanks” (anyone who’s looked for a job in the last decade or so, and especially the last two years, can attest to that particular Broadway number) for a couple of months, and then he called this company back. And wouldn’t you know, they had a position for him.
It’s a good position. Without getting into details, it’s an incredibly comfortable salary and benefits situation, and they sweetened the deal in all sorts of ways that are really blowing my mind. So far, Kyle is loving the people he works with and the company’s philosophy as well, and I really REALLY hope this good fortune settles in and sticks with us a while. We just have to get through the next five-ish days before his first paycheck comes in and then we should finally, FINALLY be okay in the longer term.
Having him working again is really nice. It just gives us a schedule during the week, real weekends instead of every day blurring together into an endless hellscape. It feels like life is just… life and not life with an asterisk about it being weird.
Do you ever get in one of those foul foul moods? Or not really a foul mood, but a mood where everything you want to talk about comes out tinged with complaining? And you don’t want to be that person that nobody wants to talk to or about because they’re always complaining, but it’s just. There.
I feel like that’s me right now, so close to the end of this pandemic, hope being dangled in front of me, but still far enough away that something or someone could ruin it, and maybe because things feel mostly good, the bad is amplified somewhat? I don’t know.
I try to do the gratitude thing, but that feels disingenuous, like yeah, I’m grateful for a LOT, but that doesn’t make the bad feelings go away any. And I want to be honest in my writing, but I also don’t want everyone to be like “ugh, Abby’s complaining again, bye.” Because I know things aren’t that bad, BUT.
I guess I can talk about the angst first and then end on a good, or better, note. The angst stems 100% from my sciatica and how it makes me feel so… limited. Because I am limited. I don’t know if it’s fear of pain or actual pain, but I’m constantly finding myself incapable of doing things that used to be easy for me, like cleaning the house or taking a walk or standing in the kitchen cooking dinner for the kids. It’s not the worst thing ever, like my pain isn’t back at Thanksgiving levels, but I think on some level, every time I feel a twinge, I worry that it’s going back there, so I limit myself.
I’m fortunate enough to have a really understanding husband who would rather I limit myself now, before it gets bad enough that I like. Need adult diapers at not even 40 years old. But it’s still frustrating. I don’t know how to explain it, really. It’s like one day, you’re able to do things, and then the next, you find yourself stuck for an indeterminate amount of time. You forget that there’s an issue because you’re feeling better, so you start picking up stuff off the floor, but then two minutes later, you have to sit with your feet up for another ten minutes so that you stop hurting. It is SO dumb.
And it’s so easy to say “well, do two minutes at a time!” but it’s somewhat Sisyphusean or worse. You do what you can but then you’re out of commission because you pushed yourself.
So that’s kind of colored my last month or so, and it’s annoying, and I hate it. I’m going in on Thursday to get an MRI and find out exactly what is causing this issue and if it’s something I can fix through targeted physical therapy or if it’s something I need surgery for (though the fact that it’s lasted as long as it has makes me think that probably we’re past the PT working point). Insurance companies like to go for minimally invasive steps first, but I’m like… I’m clearly having issues here that are more in-depth than just oopsie, threw out my back.
But yeah. Background radiation of my life, etc.
The twins turned three about a week ago, and it was a fine time. They were happy with the day, even if it kind of went by in a rush (one that I’m not getting into, but suffice it to say that my annoyance at being unable to do stuff definitely made things less fun than they otherwise would have been).
I ended up turning their day into a much bigger Thing than it normally would have been (for Sam’s third birthday, for instance, we just went to a museum and had cupcakes) because their last birthday ended up being a flop because Covid, and I guess I wanted this year to be something of an improvement. And I think it was, but man. Twin birthdays take a lot out of you. You do something that seems like the bare minimum, except because you’re doing it for two humans instead of one, it actually feels like you’re overdoing it by a lot.
But again: they’re happy. Which is what really matters.
Happier news without the asterisk, they started school last week! Early Intervention ends when your kid turns three, so they transferred to our town’s public preschool the day after their birthday, and so far, they’re loving it. We’ve yet to have one of those separation anxiety crying days, not even on the first day (maybe them being in the NICU desensitized them to going away from us for a while), and every afternoon, they come home talking about how they had “so much fun!” Their crafts are starting to cover the fridge and walls, and I’m just relieved that they’re able to do the art projects they love so much without me picking up after them.
It’s surreal having kids going to school in person. I’m a little worried because Massachusetts has been trending upwards in terms of cases, but at the same time, the school of ~600 people (kids, teachers, staff, etc.) has only seen about 12 cases in the entire year, so whatever they’re doing seems to be working. I wonder if it will still work once the schools are forced to go full time in person in April (which I do NOT agree with–it’s two months, y’all, just take the L and prep for next year), but the kids are so good with their masks that at least I feel like they’re protected on some level.
I have no idea what their days at school look like. I know they’re getting speech therapy, physical therapy, and occupational therapy, but I have no idea what the schedule is, anything like that. And I’ll be real: it feels SO GOOD to not know. SO GOOD. Because it means that I’m not the one coordinating it! I don’t have to shepherd them into a Zoom call that they won’t pay attention to, I don’t have to freak out because I forgot a meeting, I just get to use the mornings to do Sam’s homeschooling and then let them sleep the afternoons away.
It’s very nice.
Sam, meanwhile, is in the process of being evaluated by the school to see how he’s done this year and what accommodations he’d need in the next school year, if any. His therapists across the board have suspected that he’s not neurotypical, but waitlists to get a diagnosis from a doctor are a year long at least because of Covid, so we’re trying to push things through with the school first and see what they say. Last week, he spent three days doing academic testing, which went very well. His tester remarked that he’s clearly VERY smart, and that he does seem to have some executive dysfunction issues, but that he’s also good at getting himself back on track.
(at least when I’m not around, but I figured that would be the case, because he’s comfortable enough around me to melt down completely and know that I’ll never stop loving him or being blown away by him)
We’re next going to talk with the school psychologist, just to see where he is there, and hopefully, we’ll have a game plan in the next couple of weeks. I’m committed to sending him back in the fall, partly because I’m getting to the academic point where I’m a little out of my depth (he’s already learning area and perimeter, and algebra can’t be far behind), partly because he needs to be with his friends again, and partly because we both miss me just being his mom, not his mom and his teacher. It’ll take the pressure off both of us for him to be back in public school, and I’d be surprised if it weren’t safer for him to do so by fall.
And I think he’s in a good place to go back. It usually takes some cajoling, but he’s been keeping up with his schoolwork, and he’s on track with other first graders in that regard. I’m excited to see what second grade brings for him, and what life with the kids out of the house for a couple of hours a day brings for me.
(I just realized that I haven’t been home alone with nobody else in… probably six years? Or so? Maybe four? It’s hard to say)
Meanwhile, vaccines are rolling along in our house. I’ve got asthma and am obese, so I got to be the first in the house to get a pair of Pfizer jabs, the last one on Saturday. Side effects were minimal–I was REALLY tired on Sunday (slept for ~15 hours because my husband is wonderful and hung out with the kids on his own all day) and then had pretty gnarly body aches when I went to bed last night, but things have since calmed down. No fever, no chills, certainly nothing at all compared to actual Covid.
I’m hanging out on my phone a lot to try and get my mom an appointment for her vaccines, too, since she’s part of the group whose eligibility just opened up today. This remains a tricky thing to do, but I’ve been keeping up with vaccine news, and considering how manufacturers are ramping up production, I feel like supply will overtake demand in the next couple of months, and how good will that feel? And with any luck, that will correspond with cases going down, with hospitalizations going down, with deaths disappearing entirely.
It’s just that end of the school year feeling, that time when summer is RIGHT THERE, IT’S RIGHT THERE GUYS, and you just. Don’t care about classes, you don’t care about homework, summer is RIGHT THERE (and GOD, so much worse when you’re a senior in high school or college, you’re just like THIS IS ALMOST OVER, HOW AND WHY SHOULD I CARE??). You can’t think about your finals or about anything but summer being RIGHT. THERE. And YET, despite that feeling, it’s important to still be careful. Still wear a mask, still be safe, still make good choices, because unlike skipping homework during senior year, skipping out on responsibilities as the pandemic starts to cool down will genuinely have consequences (see: Brazil), consequences that can be deadly.
In other words: take care of yourselves, and each other.
I feel like this blog has been an absolute downer for the past year, though understandably so. The last year has SUCKED. I don’t think anyone had an objectively good year last year (except Big Daddy Elon Musk, but billionaires don’t count towards people having good years), and I was scrolling through my blog reflecting on how… just MLEH I’ve been about everything in the last twelve months. And again, completely understandable, but also I feel like that can’t have been fun to read. I’m sorry.
But here we are, encroaching on March 2021, one year of pandemic and social distancing and 500,000 people dying because assholes and masks and so on and so forth, and I’m actually starting to feel something that tickles a bit like hope. Real hope, not the false hope that kept popping up over the last year when people were naively like “it’ll be gone by summer!” or things like that. Real, honest-to-god hope.
After all, this is roughly the timeline they told us to expect back in mid-March of last year, when everything shut down and everything changed. Mid- to late-2021. We’re right on schedule.
I’m getting my first Fauci ouchie tomorrow, 4:30 p.m. I don’t think I’ve been this excited about a needle since the first injection for IVF, way back in 2016. My state, dear old Massachusetts, has kind of bungled the process for people to make appointments–my dad, 68 and with a heart attack in his medical charts, hasn’t been able to get an appointment, so I’m refreshing all sites frequently to try and snag one for him–but by some flash of luck, I woke up the other day to an alert on my phone telling me that a CVS near me had appointments available. I fit squarely into Tier 2 of the second phase of vaccine rollout up here–obesity and asthma qualifying me as medically at risk of a Bad Time–so I signed up.
And I’m ready.
(even if I’m a bit frustrated that Massachusetts hasn’t bothered to start prioritizing teachers yet while other states have and the websites to get appointments are basically strung together with some twine and duct tape and a few prayers and GOD, I wish I could take a hammer to said websites and get my handful of coding friends to rebuild them functionally from the ground up)
I have plenty of friends who’ve already been vaccinated for various reasons, ranging from frontline workers to teachers to people with medical issues and everything in between. Of that plenty, many have experienced the “your immune system is working” side effects–the aches, the fever, the chills, the generally feeling like shit from about hour 33 to hour 48 after the second dose. I’m ready for that. Kyle’s been keeping in touch with his boss about what’s going on, so with any luck, when I get the second dose, I can just coast through all of those side effects feeling vile but being mostly unconscious.
But I’m ready. I’m ready to not be afraid to go places besides Target or to not be afraid when I’m IN Target because the people behind me don’t seem to grok that six feet and six inches are not the same thing. I’m ready to feel like I’m not going to be putting myself in more danger if I have to go to the doctor for whatever reason (seriously, in the past year, I have avoided going to the doctor so many times I probably shouldn’t have because I didn’t want to accidentally expose myself). I’m ready to hopefully not be a link in a chain of people getting sick (like we don’t know yet that the vaccine prevents or reduces transmission, but the science–even with the new variants–looks pretty good so far).
And I mean. When even the most conservative estimates have everything easing up by summer, it’s hard not to be hopeful, outside of the trenches.
(in the trenches is another story, and every time I talk about hope, I think of my friends who do work on the frontlines and wish that I could somehow have a million dollars each to give them so that they could go on the most luxurious, relaxing, magical vacations of all time. Like hell, wanna spend two months on sabbatical in Hawaii? Go nuts, aloha. French Riviera whispering your name? Au revoir, you amazing heroes)
I’m getting vaccinated tomorrow, and then the twins turn three on March 14 and start school on March 15. Sending them in person isn’t a decision we made lightly; even though the school they’ll be attending has had exactly 10 cases out of 300 students and about 50 staff (and none of them in the preschool), the risk isn’t zero. On the flip side, though, Isaac has stagnated and regressed so much since daily ABA stopped, and I HATE phrasing it like that because it makes his autism sound like this horrible thing, and it’s NOT, but at the same time, I can feel how badly he wants to communicate with us, and goddamnit, I can try with the rudimentary PECS and I can say the words and do all sorts of things as his mom, but because I’m his mom, there’s a lot I can’t do. I’m not trained or qualified to do so much of it.
He really was making such incredible progress when he had ABA five times a week, and I know the language is there. And he wants to express himself and is SO HAPPY when we understand him. And preschool will give him an opportunity to be better understood, whether that’s vocally or through signs or through PECS. Whatever he needs. I just want him to not feel like he can’t be understood, because to me, that’s about as lonely and terrifying as it gets.
And Carrie is something of a ragdoll. She’s clever and sweet, and where communication is concerned, she’s at age level if not above it. BUT when it comes to physicality, her muscle tone is almost comically low. She seems comfortable wherever she is, which is great, but she gets tired quickly because she has to put more effort into making her muscles work than a kid like Isaac (whose muscle tone has always felt high to me because he’s always. so. tense.) or even Sam does. It impacts her ability to use her fine motor skills with holding a pencil or getting herself dressed and undressed, and I have no doubt it’s impacting her digestion. In the long term, it’s going to cause problems for her–she’ll be in pain, and I don’t want that at all. And if we can get started fixing it now, if I can get her therapy now, maybe she won’t follow in my footsteps and end up in remedial gym or getting an MRI for sciatica and feeling like she’s in her 90s when she’s not even 40 yet.
Plus, they’re SO good with masks. It’s kind of surprising, honestly. I would’ve expected the twins to just hate wearing a mask and to fight it all the way, but the two of them are absolute champs. They even have Barbie and Hot Wheels disposable masks along with the other disposable masks I’ve gotten them for the remainder of the school year. I think we’ll be okay. I think they’ll thrive in school, and I think we’ll be okay.
For the first time in forever…
…I can kind of see the rest of the year clearing up, like the way the sky clears up when it finally stops raining after a particularly long stretch of wet days. I feel like when I say, “when the kids go back to school in September…” I’m not doing some sort of wishful thinking; I’m saying something that will happen. When Sammy goes back to school with his friends, when the twins are in preschool five days a week, when I see my extended family for the first time since Christmas of 2019. WHEN, not IF.
Speaking of Sammy going back to school (WHEN that happens), I got in touch with the special ed department at his school to see if they could evaluate him for ADHD and autism or at least just to see if he has anything that would require an IEP to deal with in the coming year. His therapists have him on a waitlist to see if he can be evaluated outside of the school, but because of Covid, that waitlist is excruciatingly long–we’re talking years–and I don’t want him to start second grade at a disadvantage. I know that whatever else is going on, he deals with a lot of executive dysfunction and hyperfixation. I know that his mind goes so fast from one thing to another to another, I know that he acts like boredom is torture. I know that the idea of failing at something even a little brings him to tears, no matter what reassurances we offer. I know that if he’s asked any question about himself, no matter how benign, he shuts down and furiously refuses to answer.
I don’t know what that all adds up to. I do know that it affects his schoolwork. That he melts down when something is hard for him, that it’s an absolute WAR to get him to do his social studies and reading. That he doesn’t focus, can’t really focus, even on subjects he loves. But give him Pokemon or Minecraft or the deep sea, and he will tell you everything in excruciating detail. That he’s terrifyingly smart–doing third grade math as a first grader and absolutely OWNING it–but that he needs someone to help him apply that intelligence.
And I don’t know. Maybe it’s that I’m not as good of a teacher as I like to hope I am. When he’s on, he REALLY gets stuff. He’s getting straight As in math without even blinking, and I think he’s doing okay with improving his spelling and handwriting, but I feel like there’s something about his learning style that’s out of my reach, and if nothing else, I’d like to see if the staff at his elementary school can identify it.
A lot on my plate. Again. I can sort of feel my sciatica flaring, but I’ve been more careful to take time off and be diligent with my medication because I am NOT doing that again. I have an MRI to look at it up close on the 8th, and until then, I’m just taking it all one day at a time and knocking items off my to-do list little by little.
And feeling like the sun is starting to peek through the clouds. Which is nice.
The countdown is on, my friends: 39 days until the twins start preschool in our town’s integrated special education program.
I’ve had this countdown going for a while, but until Wednesday, it was unofficial. And admittedly, the situation isn’t ideal, but
Well, let’s start from the beginning.
Back in 2018, in August, Isaac started working with Early Intervention therapists because he had torticollis in his neck (which means that he had a hard time turning his head, probably as a direct result of it being firmly wedged up against my pelvic bone for the last 8 weeks of the pregnancy). He saw a physical therapist fairly often to gently ease him into having less of a stiff neck. About four months later, Carrie joined him in the arena of physical therapy, since she was being very slow in terms of gross motor skills.
As time passed, both twins gained more services–occupational therapy, speech therapy–and Isaac was eventually diagnosed with autism; and then, Isaac started ABA therapy and did fantastic with that, too. Up until the pandemic, the services we had were doing a fantastic job ensuring the twins were progressing in their development at an appropriate pace, and they had even started attending a once a week playgroup so they could start learning how a classroom worked for when they started preschool.
Because, you see, the beautiful Commonwealth of Massachusetts pays for therapy up to kids’ third birthdays–that’s what Early Intervention is. After the age of three, though, the state stops paying, and you have to hope that your kid qualifies for special ed preschool or even with insurance, you’re going to be shelling out a LOT of money for therapy.
So anyway. The world tried its damndest to stop last year but failed to do so, and the twins’ third birthday is rapidly approaching. Amidst my planning for a nice, lowkey celebration (read: no party whatsoever, maybe just my parents coming over, cupcake flavors, presents all purchased), we’ve also been planning for that transition, because as of March 15, the twins’ services won’t be covered under Early Intervention anymore.
None of them. Not speech, not PT, not ABA.
So about two weeks ago, we took the twins into our primary school for their assessments. It’s the same school Sam attended last year and will attend in the fall, and he was really excited and proud of it, talking about it as if he hadn’t been there in decades (“oh, yes, I remember the auditorium!” “of course, that’s the office!”). The preschool was set up in such a way that everything was absurdly spread out, which was a good sign; with OT and PT, we aren’t going to be able to keep the twins six feet away from everyone all the time, but seeing that the classroom was set up in a way that physical distancing was encouraged when it could be was reassuring.
During the assessment, Kyle and Sam and I sat at one desk off in a corner of the room while the twins played with the therapists in another corner. Carrie immediately took to the dollhouse they had and quietly set about tucking a plastic kitty she found into bed, while Isaac stood in one place and observed everything while smiling that amazing smile of his and making every therapist and teacher fall in love with him.
The whole thing lasted about an hour, maybe a little longer, and we were keeping our fingers crossed the whole time that both twins would end up qualifying for services. We never doubted that Isaac would–after all, he doesn’t speak independently yet–but we weren’t sure about Carrie. She’s behind, but her delays aren’t as obvious as Isaac’s, and her delays could probably be helped with a longer, slower path, if at all.
BUT the amazing therapists saw exactly who our twinsies are and saw where Carrie was struggling and where Isaac was struggling and recommended that they both attend preschool five half days every week.
And with the pandemic going on, I’d be reluctant to agree to that because there’s all these new variants making everything worse, and who knows when any of us will be able to get our Fauci ouchies, but today, we got the IEP with the breakdown of services.
If we leave out the preschool aspect (which would be roughly ~5 appointments per week), we’re still looking at $175/week for Isaac in copays and $125/week for Carrie in copays for all of that therapy. And they wouldn’t get that level of therapy outside of school, BUT a lot of it is stuff I feel like they’d really excel with having, stuff I never would’ve thought of, stuff that I don’t know they could get in an at-home environment because of the pandemic.
Carrie, for example. I’ve worried about her core strength and muscle tone for a while (she’s always been something of a ragdoll floppy baby–never in a way that makes you terrified, but she’s very good at molding herself to you), but never loudly enough to raise alarm bells to therapists and doctors. She demonstrated it so well during her assessment, though, that they planned for her to have just as much PT and OT as Isaac, and that’s a huge relief.
And Isaac has the full cocktail of services–PT, OT, speech, and ABA, all provided by the school. And I’m REALLY relieved. His ABA therapists have been great, but because of the pandemic, they’ve been really sporadic in their availability–going back to school, having to quarantine because a family didn’t bother to mention they tested positive, just unavailable because nobody wants to be going into homes these days. Giving him the opportunity to get those therapies in person five days a week… GOD, it’s just such a weight off my shoulders. He did so well with just ABA in the mornings from March through October, I can’t wait to see how he takes off when he’s getting all of these therapies all the time.
So everything is in review, I am buying six billion child-sized surgical masks every week (they come with Barbie and Hot Wheels prints at Target!), I am waiting for a TON of paperwork from the school, and I’m feeling an honest weight lifting off me.
39 days. There’s obviously some additional relief there, with me suddenly having MUCH calmer mornings than I’ve had in three years (let me tell you, in September, when we’ve all gotten our Fauci ouchies and everyone goes back to school full time and Kyle is commuting to the office 2-3 days a week and I’m ALONE for the first time since ~2013, omg, I am going to party SO hard, by which I mean I am buying a box of a dozen doughnuts after dropping the kids off and eating them ALL BY MYSELF and then enjoying the sugar coma until it’s time to pick the twins up), but most of it is a mixture of apprehension about Covid and relief about the services continuing with a much more consistent delivery that won’t completely bankrupt us.
I’m taking my time processing it all, and in the meantime, I’m just quietly shopping for first day of school outfits. In March. For twins. Who are almost three.
Because I can’t make the pandemic magically go away (if only), and I can’t look into the future and see that these services will work out really well for them both, but I can make them both look hella cute on their first day.
This was going to be a long blog post about the inauguration and politics in general, but that leaves me feeling tired. Suffice it to say that I’ve breathed a sigh of relief, but I also acknowledge that there’s a lot of work that needs to be done, and I’m focused wholly on the future and how to improve things instead of bemoaning the immediate past. The past informs the direction that we need to take as a country (a wholesale rejection of white supremacy, measures to rectify massive wealth inequality, having an actual PLAN for the pandemic instead of just pretending it doesn’t exist so we don’t spook the markets, etc.), but I’m through arguing about the past four years. They were politically terrible. Let’s move forward.
Instead, because I don’t feel like getting my blood pressure up today, I’m talking about life overall, or life in our house, at least.
Because it goes on. Like I said last time, insurrections, elections, inaugurations, Bernie with his mittens, it all happens and it all affects you, but at the same time, life goes on. You read a headline, you feel angry or sad or hopeful (which is new), then you have to run to the post office or call the kids’ therapists or something or another. Maybe you discuss it, you sign a petition, you run to a protest, you donate, but life is going on with or without you.
Life goes on.
The twins had their preschool evaluations on the fifteenth, and it went well, I think. They met with the entire preschool team, with the physical therapist running the evaluation while the others–the teachers, the SLPs, the OTs–took notes and observed. Kyle, Sam (who was there because we didn’t have childcare for him), and I sat in a corner of the room that was separate enough for the twins to not zero in on us instead of what they were supposed to be doing.
They started out pretty shy. Carrie warmed up to the situation first, when she saw that they had a dollhouse, because she is quintessentially what toy marketing execs want a little girl to be. She loved that the dollhouse had a little toy cat with a little toy toilet and a little toy bed, and she spent a great deal of time meticulously tucking the toy cat into bed or settling it on the toilet, not really talking about what she was doing, just doing it. She was SO quiet that the SLP had to come over and talk to us about her speech, and we talked about her on bad days–preferring one-to-two-word phrases over sentences, even though she CAN use sentences, and murmuring nonsense under her breath to tell you things. She’s very stubborn, so if you want her to talk to you, she just will not do so.
She also, apparently, struggled with her fine motor strength–not her accuracy, but her strength, coping the OT’s movements with her crayon but not really applying a lot of pressure.
And, really, much of the evaluation was for her. Isaac’s struggles are pretty easy to spot and pretty easy to describe. He spent the first ten minutes of the evaluation standing stark still like a statue and smiling shyly behind his mask. Though he eventually warmed up, he’s mostly nonverbal still (which is more of a “behind” thing than a permanent thing–he’s about where Carrie was between 12 and 18 months, and I think he’s mostly stagnated because the pandemic has prevented us from having in person speech therapy for a year now. Like, we work with him, but we don’t necessarily know what to do to encourage him to, for example, speak independently instead of parroting us) and has exactly zero sense of danger, which combines poorly with his extraordinary fine motor skills.
(which sounds kind of cool, but you don’t expect your two-year-old to figure out how to unlock a window, create a tower of stuffed animals to reach the lock, unlock and open the window about two inches, figure out how to open the screen, open the screen, and then start tossing his toys down from the second story window. That’s a surprise. So yeah, the windows in the twins’ room are duct taped shut now)
But the evaluation was both to get an idea of where Isaac is and to see if Carrie actually qualifies for the preschool’s special ed program. She’s right on the border where she MIGHT need the extra help, but she might also catch up with her peers by just being with them. It’s hard to say. And it’s not a huge deal either way–when I talked with the head preschool teacher over Zoom, she explained that Carrie will have a spot in the program no matter what, it’s just a question of whether she’s there for free as a special ed student or whether we pay the $140/month tuition.
And even that isn’t a big deal. When Sam was in preschool at the twins’ age, we were paying probably… mmm, I want to say about $200/week because it was a full time private daycare. Which I LOVED, but I can even point to ancient blog entries I wrote here about how I realized that having twins meant no more daycare for anyone. So back then, I was wondering “omg how are we going to even afford preschool for them, that’s $400/week, that’s $1600/month, how can we do that, that’s a second mortgage?”
The idea of both of them going and us only paying $140/month? $35/week? It’s kind of miraculous. And if it’s free, I’m just going to do a dance.
We’ll find out sometime this week how things went, and then we have a meeting on February 2 to set up their IEPs (or IEP if Carrie doesn’t need one). And that’s WILD to me. I’ve talked so much about IEPs with so many people (my sister always had one, my mother-in-law is a special ed teacher, one of my besties is an SLP, etc., and that’s not even counting the huge village of parents of children with IEPs who are like “yes, I will help you with this, I will tell you how I best advocated for my kid”) that actually diving into one is like
Let alone diving into TWO.
We’re very fortunate. Our town is apparently one of the best in the area for special education from top to bottom (which isn’t surprising; everyone here is some degree of wealthyish and it looks like fucking Happy Valley from “Mickey and the Beanstalk” and then there’s me with my overgrown ugly lawn covered in dead leaves like “oh yeah, I totally belong here!”), so while I know I’ll have to fight for a lot of things, I don’t feel like I’ll have to fight as hard as I would have somewhere else.
(like apparently, my hometown, which is just a few miles down the street from me, has one of the WORST special ed programs in the area. They used to be good, according to all of our therapists and contacts, but nowadays, things are just garbage from top to bottom)
It’s a lot. But I feel ready.
And life goes on.
And it might end up being THREE IEPs, anyway. Sam’s been having in-home therapy for a couple of months now to deal with, oh, a whole bunch of things. His anxiety had reached a point where he wasn’t sleeping in his own bed at all, he has days where he barely eats, he’s an absolute ping pong ball if he doesn’t have something with a screen drawing his attention… it’s a lot. Kyle and I had a sit down talk with the therapists over Zoom on Monday, and they suggested having Sam evaluated for both autism and ADHD.
The autism bit has me a bit skeptical. They were noticing a lot of the outward signs, and I agree that Sam has a lot of sensory issues, BUT if he is autistic, he’s also the most adamantly extraverted autistic kid I’ve ever met. And that’s not to say that autism can’t look like that–it’s a sundae bar, after all, and you can have all sorts of weird varieties of stuff going on–but it’s just. I hate to say this because it’s so not clinical, but he doesn’t ping my autism radar the way Isaac did from ~day one. Isn’t that a dumb thing to think? Like “mom hasn’t ever gotten autistic vibes from him, not even a little” is not a good diagnostic criteria, and should not be used as a diagnostic criteria.
I took one of the screening tests for him, the one they use in clinical settings, and maybe I’m too close to him to see (but unless I’m missing something, I feel like a lot of these tests are just asking parents how their kid is anyway and then observing in a play setting?), but he scored way too low on the autism test to even warrant further testing. And again, maybe I’m just too close to the situation, but like. I can’t imagine I’m missing THAT MUCH, you know?
Now, on the ADHD test, on the other hand, he scored off the charts. Everything from his lightning fast mind to his constant movement (not stimming, just MOVING) to his general breakdowns if he gets a question wrong was right on there. But professionals who see him in brief settings keep saying “no, he doesn’t have ADHD, but he’s probably autistic.”
I don’t know how to respond to that! I go, I do the assessments that are available, and maybe I have confirmation bias or maybe I’m too close to the situation or maybe I’m just crazy, but I end up getting super low scores for autism and super high scores for ADHD and I just ???? am I missing something? I see this child all day every day. He’s my son. We talk all the time. We snuggle up at bedtime and go over his day. He tells me matter-of-factly how he feels about so many things. I know when I can and can’t push him on things, when we can work through something or when we need to disengage from it. I’ve SEEN him from the moment he was born, and I’m just so confused here. Are they seeing something I’m not? Are we all just misinterpreting the same information?
Anyway. We’re trying to get in touch with someone to schedule an evaluation for the next soon, because if he does have autism or ADHD (or sensory processing disorder, which I also suspect), I want to know ahead of time so that I can plan IEP meetings for when he gets back to school in the fall. If nothing else, I want to be able to talk to the school in general to say that while he’s soaring in math and science, and while he can read perfectly well, he struggles with handwriting, with creating sentences, and with reading comprehension.
Life goes on.
It goes on for me, too. I started my inauguration day with a visit to an orthopedic specialist to talk about my back. Here it is:
Note how spines are not supposed to look like that. I apparently have slight scoliosis (less than a 25 degree curve, which means I’m not really a candidate for surgery, more for just PT and figuring out how to live life overall with a wonky spine), some twisting going on (though it’s unclear if that was just posture-related or is an actual Problem), and bone degeneration that’s a bit more than usually expected at my age (not quite 40). I’m supposed to be getting on a calendar for an MRI sometime in the next near future so that we can see what nerve involvement is there, and if there is nerve involvement (which there is, I can feel it), I’m a candidate to get an injection of anesthetic and steroids into my sciatic nerve in order to keep it from, you know, murdering me.
It’s both vindicating and frustrating. On the one hand, I’m able to point to it and say, “LOOK, see, the fact that I’ve thrown my back out at least once a year since I was 20 has a REASON behind it. I’m not being overdramatic, I do have some issues that could stand to be addressed in numerous ways!”
But on the other hand, I feel frustrated that I’m just learning about this now, that I didn’t think to get it examined before, when I was throwing my back out with such regularity, not necessarily because I was lifting something wrong or doing something weird but because my back is just prone to spasms. I could’ve spent years working on this and not been here, feeling miserable and useless.
Oh well. The best time to plant a tree is 20 years ago. The second best time is today.
And life goes on. The pandemic is slowing, slowing, slowing. It doesn’t feel like a very fast slowing (because how would slowing be fast??), but it’s happening. If President Biden is able to really get his vaccination plan off the ground, maybe summer will be normalish, maybe we’ll go on a very short vacation to like Hershey Park and Sesame Place, maybe this isn’t a forever sort of thing. Maybe we’ll get on a plane again someday, maybe we’ll travel across the country and the world again. It feels possible, which is a huge step above where it felt even a month ago, and I’m grateful for that.
This year, when we went to my parents’ house for Christmas Eve (we basically see them every week anyway), my mom talked about how she’d felt a bit like Christmas was another thing on her to-do list sometimes. That with everything to check off–the decorating, the buying, the wrapping, the cleaning, the cooking, the baking–it can feel like it’s just another Thing. And Christmas is absolutely my second busiest time of the year, no doubt. The March-through-July stretch is still a LOT crazier because every event every month in that stretch is a Big One, not an optional one, and none of them are my birthday.
So yeah, Christmas is a crazy time of year, but it’s usually also a rewarding time of the year. Sure, I’m pulling my hair out somewhat when we try to finish up on Christmas morning so that we can get to my uncle and aunt’s house before everyone settles in for dinner, but then there’s the catching up with everyone and the laughing and meeting new babies and new boyfriends and sometimes, my uncle makes this amazing saffron cream pasta that makes you understand why people pay so much for saffron…
Which isn’t to say that this year wasn’t rewarding. It was, just. You know. Different.
Like all of 2020.
We’re still combing through everything the kids got. My parents and Kyle’s parents spoiled them, of course, because that’s what grandparents do, and our playroom is currently overflowing with both (a) boxes, and (b) toys. We’ve been bringing things out one at a time, all while trying to sort through what’s in the living room and find places for that.
Sam got a pair of robots and some video games for Christmas, along with a few Lego sets, because he’s frustratingly easy to shop for. He’s one of those kids whose interests are narrow and specific, so on the one hand, you know exactly what themes to hunt down in toy sections; but on the other hand, you’re just like… I really want to get you something different, but all you want are these things. But he’s seemed pretty happy with what he got, and I feel like his gifts have much more staying power than the twins’.
Isaac was the one I thought would be least impressed with his gifts, but to my absolute surprise, he’s the kid who took to everything the fastest and has been playing with his gifts most consistently. Santa gave him a singing Mickey Mouse train, Kyle gave him a weird musical toy called a “Rocktopus,” and my parents gave him a little red Playmobil minivan. The train and the Rocktopus are never NOT singing, and the minivan, despite being hard as a rock and full of breakable things, has become his first ever “must have it in bed with me” lovey.
And Carrie, who is every little girl ever, received pretty much the best gifts for every little girl ever: an Ariel doll, a makeup table (for pretend makeup, of course), a dollhouse, and a dress up gown with accessories. She’s been frolicking about the house in a whirl of joy, and when she’s done being whirly and joyful, she falls into my arms, sighing happily and saying, “Oh Mom. I you so much!” (which is her way of saying that she loves me so much)
So it’s been good. And Kyle and I spoiled each other, too (I gave him Whataburger sauces and a fancypants sleep mask; he gave me jewelry and my very own fountain pen), and we spent Christmas Day doing nothing but watching movies on TV while eating popcorn and pretending that it was a normal Christmas and we were totally at our local theater and not scrunched up on the couch and saying things like “SAMUEL MATTHEW, STOP RUNNING RIGHT NOW.”
We saw Soul first, and it was honestly one of the best Pixar movies I’ve ever seen. It’s hard to explain it because the plot is kind of loose? And the message is kind of loose? But it also was a film that wasn’t escapism, that didn’t want to be escapism, that wanted you to leave the theater-slash-living room and go live life, not just exist. And it was heavy material, but it was handled in a strangely effervescent way, so that even though it was a lot of DEEP questions that required a lot of heavy pondering, you didn’t feel bogged down by them.
And it was gorgeous and made me more determined than ever to take the kids to New York when this craziness is over.
Wonder Woman 1984 was… eeeeeh. Kyle and I watched it after the kids went to bed, having our first “date” since the pandemic kicked in, and… eeeeeh. There was a scene at the very end that had us both sobbing, Pedro Pascal and Kristen Wiig did great jobs for the most part (the CGI got in Kristen Wiig’s way towards the end, which was a shame), and there were some fun moments, but… eeeeeh. It was disappointing. I didn’t go in with super high expectations, and even my lower expectations weren’t quite met, so that’s a shame. Still one of the better DC movies but… eeeeeh.
And thus the year is finally, finally drawing to a close. I know that the world in general won’t turn a magical corner on January 1 that has everything back to what we want it to be (though wouldn’t that be a trip), but at least we have the vaccine and a new presidency to shake things up a bit, and hopefully, by this time next year, I won’t be digging for scraps of things that made this year good.
It’s funny. Back last December, I bought a memory jar for us to keep this year, figuring we’d have a lot of cool memories to read about on December 31 as we counted down to midnight. It didn’t last long, mostly because mindfulness, while awesome, is one of those things it’s harder to do when you’re in the trenches of motherhood. You know what I mean? Those days, those weeks, those years where you give all of yourself and then some, and you take a shitton of pictures, not to show off your awesome mommy skills or embarrass the kids in the future but because you can’t be in the moment. You’re clinging by a thread, and you want to remember the good, but you can’t focus on it because the bad keeps showing up.
It’s not been the worst year for me; by comparison, we had it pretty easy. Despite Kyle losing his job in the spring, he got a MUCH better job in the fall, one that pays more, even if the benefits need some work. Sam being homeschooled has meant I can really focus on him for hours at a time, despite the twins, and he’s been able to get a more individualized learning plan (read: my six-year-old is doing multiplication and division without even thinking about it, and it’s weird). He and I have had more than a few outdoor adventures, including a really fun hike back in October (sigh, that was roughly the last time I felt healthy enough to get out and go) and a visit to a nearby pond.
Sam and Isaac both started therapy (in December and March, respectively) to help deal with everything. Isaac’s ABA has been better than I expected and not the nightmare I’d feared; Sam’s therapy has just started, but I can already see how he’s much calmer on therapy days than on days when his therapists don’t come. They’re both doing really well, and wildly enough, they’ll both be starting school again next year… in March and September, respectively.
I was hospitalized for my mental health, and I’ll be real, it’s a miracle more people haven’t done that this year. I’m lucky: my husband noted that I was doing really badly (I legitimately do not remember this summer, that’s how bad it was) and MADE ME get help. I learned the difference between wanting to die and being overwhelmed by life (there is a difference), and I learned actual real coping skills. I’m starting maintenance therapy next week so that I can focus on keeping my brainmeats healthy instead of letting them slip and slide and become a mess again.
I have a path forward for my physical health: my doctor has finally referred me to an orthopedic specialist for my back, and with any luck, I’ll have a specific way to get to a point where I can actually get out again (like I feel like I could now, but it’s cold and I’m also terrified). I survived the worst physical pain I’ve ever felt this year, somehow (wild thing about sciatica being that you’re in the worst pain of your life, pain so bad it gives you PTSD, but you are nowhere near dying, and when the pain ebbs, people mostly just tell you to walk and lose weight, like they do whenever you have a problem while fat). I had surgery and ruled out a major potential cause of my overall life issues.
So it hasn’t been an all bad year for me. But I’m still eager for it to be over.
I don’t necessarily think 2021 is going to be better overall, at least to start, just that we’ll all mostly be used to the chaos, so it won’t hit as hard. And slowly, slowly, things will get better. Plenty of people will still be idiots, of course, because that’s the world we live in, but idiocy can be mitigated by good people doing good things and stopping bad things. It’s going to be rough going. None of the positive things are quick fixes; they will take time, and they will need a lot of pressure, and just because things are no longer at an immediate boiling point does not mean things are better. Creating a better world is a true effort.
With that in mind, I decided that no, 2021 is not my year. It is my bitch. I am transforming myself into a screaming banshee of rage and forcing things to get better. I will scream and I will fight and by this time next year, I will be able to say, “you know something, that wasn’t a half bad year after all.”
I was born in 1983 and grew up in an age when girls weren’t really diagnosed with autism unless the symptoms they presented severely interfered with their daily life. A girl like me, quiet and awkward, a little weird, a little too obsessed with the Thing Du Jour (American Girl dolls, Mandie books, My Little Pony, Barbies, spooky stuff, etc.), mostly gets good grades but really struggles with homework in subjects she doesn’t like… I flew under the radar. I didn’t stim or do anything that would make me seem weird. I didn’t freak out when the sounds in the cafetorium/cafeteria were too much for me to handle, I just got really quiet and didn’t participate in the lunchtime conversation. I excelled in certain subjects and flailed in others. I was flawless when it came to standardized testing, but then got an 8/100 on a math test the same week I soared into the 93rd percentile for the NMSQT.
I could talk, and I took care of myself physically, enough that I didn’t usually warrant a second glance. Oh, I got bullied and made fun of in junior high–brutally at some points–but I flew under everyone’s radar for the most part. I don’t think anyone ever clocked me as weird enough to maybe be autistic, because back then, in the 1990s and early 2000s, autism wasn’t as well understood as it is today, so my cocktail of manifestations didn’t alarm anyone.
Masking is pretty common in our world. We all wear masks sometimes to hide certain aspects of our personalities depending on the situation; for example, if you’re at an important job interview, you’re not exactly going to be showing off the part of your personality that likes to do keg stands or the part of your personality that likes to lounge around in the nude on weekends. There’s nothing wrong with either those traits or the masking of those traits. It’s just something that you do to survive socially, because your new boss does not need to know that you like a gentle breeze ‘round your privates on Sunday afternoons.
Where autism is concerned, masking is a lot more… consuming, let’s say. Autism isn’t a personality trait that shows up in certain situations (like even if I do like to run around naked on weekends, I don’t do that in the office); it’s the way your brain is wired. Not wrong, just different. The trouble is that different can be socially damning.
I remember when I was younger, there was a kid on my school bus whose autism manifested much more noticeably than mine. While I would sit quietly and stare out the window, focusing on the cool sensation of the glass against my forehead, he would talk and flail and laugh, and the kids from the back of the bus bullied him mercilessly, sometimes going so far as to sexually harass him. He stood out too much; it was social suicide.
And, well, I learned from that and from other small situations as I grew up that letting those weird parts of you show is too dangerous. That it’ll get you made fun of and torn to shreds. That you’ll be alone. I saw the girl who came from a lower income family, whose clothes and hair were always dirty, who always sat alone. She was too different; she was alone. I saw the kids who I now regret not befriending, who went on and on for days about D&D and all of those fantasy stories, and I saw how people avoided and laughed at them, and I learned a lesson. They were too different; they were mocked.
You hide things, you know? Don’t talk obsessively about Disney World, that’s weird. Are you excited about that thing? Don’t flap your hands or bounce or do a little dance; that’s weird. Are you too tired to think? Don’t play with your hair; that’s unhygienic (Mrs. Dube, if you ever read this, I hope you feel like shit for what you did to all of us in your class). Everyone is having fun at this party, and even though it’s too much for you, smile anyway. People think it’s weird when you talk to them without meeting their eyes; make eye contact, even though it hurts.
In a way, I sometimes felt like an alien, trying to learn the way that the world was supposed to work. It’s part of why I loved being onstage–it was like an evaluation of my ability to act like a human being. “SEE?” I could say, as I got into one of my character parts (I had so much fun with those). “LOOK AT HOW GOOD AT HUMANING I AM!” And I wasn’t weird or different, I’d unlocked the secret to being human like everyone else.
And then the lights went out, I got offstage, and I was right back to being bad at being a person again.
(this all sounds very sad, but I promise, there’s good coming)
But one thing nobody talks about, when they talk about masking and autism and all of that, is the beautiful freedom of unmasking: of finding someone or several someones who catch a glimpse beneath your mask, show how much they love you anyway or even because of what they see, and help you feel comfortable enough to remove your mask completely, to say, “fuck it, I am who I am.”
My most obvious example of this is Kyle. Over the early years of our relationship, he peeled back layers of my mask bit by bit, knowing what was underneath but letting me take my time to show him. And now, my god, how comfortable I am around him! We were watching The Mandalorian a little while ago, the episode where Moff Gideon reveals that he has the darksaber, and I shrieked and started flapping my hands, which I never do because I know it’s a weird thing, that even if I have the instinct to do it, people don’t like it when you do it, but with Kyle, it just hit me that maybe it’s okay, that maybe he loves that about me, and he does, and he smiled at me and just said that he knew I’d love that, and that was that.
GOSH I love him.
And I’ve been thinking about it, and I realized that my first intentional unmasking came when I did my semester at Oxford back in 2004. Away from people who knew the masked me, away from anyone who knew the big long plans I had for my life and the narrative strand I wanted my life to take, I felt free to just… be. Not to the extent of flapping my hands excitedly about things, but I went in exhausted, torn down from a shitty relationship right before I left, and basically stripped down to my essentials to a point where I just… couldn’t be bothered. After all, it was only 100 days, and if my housemates thought I was too weird, we’d all be going to different corners of the world after that anyway.
But they didn’t think I was too weird. Pretty weird, I’m sure (I am pretty weird, after all), but they liked me, the me with only the barest of masks on, and the best part about that was how it allowed me to solidify who I am, not just which mask I’m wearing. And since that point, I’ve been a lot less interested in hiding any part of me: autistic, neurotypical, pleasant, unpleasant. I am who I am, warts and all.
I also look back and think about the handful of “ones that got away,” you know, the people with whom you know you could have had something special, that even when you’re perfectly happy in the life you’ve got now, you regret the way things ended. And I realized that the ones that got away, the ones I wish I had actually connected with for longer than a millisecond, they all peeked beneath that mask and tried to let me be myself… and I got scared and ran, because even with that reassurance that hey, I love you for who you actually are, it’s hard to trust.
Because you know, you get people who want to remake the mask into something more to their liking or you get people who trust the mask is reality, but when someone genuinely wants to see what’s beneath the mask before you’re ready, even if they like what they see, you get scared.
Isaac, so far, has no mask. He looks to his brother and sister for information on how he should behave as a person–it’s fascinating to watch in real time–but he doesn’t pretend to be anything other than who he is. And he is an absolute delight of a child. He’s creative and funny and an absolute little shit in the best way possible.
(parents know that when you’re calling your kid a little shit, it’s not because you don’t love them; it’s because they figured out how to do something they weren’t supposed to do in a way that you can’t help feeling a little bit proud of. Like, no, you’re not supposed to have eaten 32 cookies before dinner, but the Rube Goldberg device you built to access the Oreos is technically amazing and I’m sending in your application for Mensa while also sending you to your room)
We call him our little rogue, because we are a D&D family, after all. Sam, with his strong sense of personal rules and tendency to charge headfirst into everything (walls included) is our paladin. Carrie, always performing and able to reduce you to giggles or tears with a single look, is our bard. But Isaac, climbing and sneaking and figuring out every possible puzzle, is our little rogue.
He likes to build and set things up in particular ways. He uses the books in his bedroom to make smaller rooms–setting them up at the foot of the bed or against the wall to make into a room with a door that opens and closes. And sure, he tears the pages out and tosses them around like confetti (we are down to about 3 books that he hasn’t destroyed, save for the older ones that come into the room for bedtime and leave afterwards), but the amazing creativity and cleverness he exhibits to build his own little rooms like that just astounds me.
And then his cars. He’s doing the stereotypical lining up cars thing, but he does it in such a way that the cars all face out of the window through which he watches cars coming up and down our street. And I just flail because what a guy! What a clever little dude! What an amazing mind at work!
We never discourage him from stimming; instead, we stim with him, the whole family gets involved. We turn on his favorite music, and the five of us just rock with him, and he has this HUGE smile on his face because he’s not alone. His family gets him. We’re not going to stop him from being who he is.
I think the fact of him eventually masking is inevitable; even in a more enlightened world, 30 years after I was a weird kid combing her hair with a fork in the first grade, you can only deviate from the norm so much before people start giving you a wide berth. He’ll have a teacher scold him at some point for rocking too much during a test or he’ll get teased for talking too much about cars with another person. He’ll learn to hide those aspects of himself for a while, around people who don’t know him well enough to love him for who he is. And I hate it.
I hope that Isaac understands this: that he doesn’t need to mask around us. That we’ve seen the way he’s made from the very beginning. We know why he does what he does, and we love it about him. Isaac, unmasked, is the person we love and always will.
Weekday mornings at 9:00, Isaac’s ABA therapist arrives.
(we’ll call her Y here)
Isaac knows when it’s about time for her to get here, and he perches himself on the back of the big couch, the one against the picture window. When he sees Y’s car pull into the driveway, he smiles his happiest smile and watches her walk from her car to our front door, and he beams at her as she comes inside.
She washes her hands first thing (after all, we’re still in a pandemic), and then she goes into the toys room (it’s supposed to be a dining room, but Sam’s toys have kind of taken over, and we don’t really have the best dining furniture anyway) to get the Box. The Box is essentially a lockbox full of developmentally appropriate toys: crayons, blocks, beads, puzzles, Play-Doh, etc. The Box only comes out during ABA time and gets put away when ABA time is over, so the toys mean a lot to Isaac (and to Carrie, who gets ABA therapy at the same time Isaac does).
ABA is a lot less structured and behaviorally focused than I’d expected it to be. Isaac mostly directs what they do himself, with the only real therapeutic mandate being that he has to communicate as much as possible during play. This typically takes the form of him asking for things by saying their name and saying, “please” (e.g., “please puzzle” for today) or making a verbal choice between two things (e.g., choosing between the yellow crayon and the purple crayon… admittedly, a very difficult choice).
For two hours, from 9:00 to 11:00, things are pretty blissful. Isaac loves Y to pieces (and she’s fantastic with him), and he loves his Box. I can’t tell you if he’s got one favorite toy in there that matters more than the rest, because he bounces between them so happily, though he makes sure that he spends a healthy amount of time with each one. He likes stacking shapes and building with blocks. He likes using crayons–both fat and thin–to make various masterpieces in a coloring book. He likes putting together the puzzles and naming each picture. He likes smushing the Play-Doh between his fingers. He likes pushing the wheeled toys–a fire engine and a singing puppy–around the living room.
When it’s time to clean up and have lunch, he helps, because he’s a firm believer in everything having a place, and the toys’ place is in the Box. Y takes the box back to the toys room and says good-bye (Isaac always says, “Bye!” very happily, I think mostly because he knows how to say it), and then it’s time for lunch.
ABA is one of those things that I find difficult to talk about with people I knew well before Isaac got his diagnosis, because in a lot of adult autistic circles, ABA is tantamount to child abuse. It’s painted as a way to erase your child’s autism, as a lot of negative reinforcement, as trying to make your kid “normal” rather than as accepting them for who they are.
And the reason I’ve found it difficult to talk about ABA is because… well, our ABA isn’t like that at all. Not even a little bit.
I’m not saying that to invalidate anyone’s experiences, because I believe them, and I can see where ABA therapy has the space and methodology to become really nasty, really easily. And I’m also really frustrated that it’s often the only therapy approved by insurances.
I remember when Isaac first got his diagnosis, the doctor who gave him the diagnosis said that maybe he wouldn’t even need a diagnosis in a few months (of course, this was before COVID turned everything into crazy town, so who knows what she’d say today?). The way she said it sort of suggested that ABA and therapy would remove Isaac’s autism, but they haven’t done that, and that pleases me. He’s autistic. That’s as much a part of who he is as his brown eyes, his adorable giggle, his amazing hugs (seriously, this little guy gives the best hugs).
What ABA has done for him is given him a way to communicate with the rest of the world and a way to not feel so frustrated. He’s always been a kid who desperately wants to be understood, so when he started having those lightbulb moments with ABA where he realized “oh, if I make this noise while moving my lips like this, they understand that I want milk” they came with so much joy for him. He still gets this enormous smile on his face when he says something and you understand him. He wants to be heard.
That he’s being heard and understood has also really improved every aspect of his life. He’s not as prone to meltdowns or tantrums as he used to be, and he’s sleeping better. He’s stopped throwing the entire contents of his and Carrie’s room to the bottom of the stairs most days (most days). Even better, for my mommy heart, he and Carrie have suddenly become inseparable. Oh, they still fight like cats and dogs sometimes, but they also refuse to sleep in separate beds at night (though if they wake up at 3 a.m. and aren’t in separate beds, it gets very loud) and they tag team almost everything. Isaac is mindful of the things that Carrie likes and makes sure she has those things whenever possible (e.g., her favorite toy in the ABA Box is the bucket full of Mardi Gras beads; she likes to drape them around her neck and around her ankles to be as glamorous as possible. Isaac knows this, and so once he’s worn all the beads for a beat, he finds her wherever she is and methodically adorns her). When he is upset, Carrie is often the first to notice and make sure that everyone else knows (“ISAAC SAD! STOP IT!”).
I don’t know how things are going to progress in the next ~year (the twins will be aging out of early intervention next spring, theoretically, depending on what COVID is doing), but so far, ABA has been nothing but wonderful for us. And I think that boils down to two (or so) things.
The first is Isaac’s personality. He’s an extroverted autistic kid; he wants to communicate. He’s a goofball, very talkative and curious, excited about being tall someday, loves singing, and loves people in general. And I think that’s kind of what autistic therapies–especially ABA–want kids to become: those outgoing, will tell you all about This Neat Rock They Found, absolutely hilarious kids. I’m fortunate enough that I have three (hahahaaaaaa my introverted ass is like “I love you all so much but I need sixteen naps right now thx”), that Isaac was essentially just waiting to have the tools to communicate, so when he was given those tools, he flourished.
And like… I think a lot of people don’t understand that autism is a way of experiencing the world, not a personality trait. You can’t train it away by trying to reward outgoing behavior or punish introverted behavior (nor should you because hello, let your kids have personalities?). And that lack of understanding permeates a lot of autism therapies, unfortunately, so instead of focusing on giving kids the tools they need to express their wants and needs (because I don’t think anyone would say that giving kids those tools is a bad idea–you need to be able to express that your needs aren’t being met, and what sort of shitty life is it if you can’t ever say, “I want a doughnut”?), they focus on trying to change personalities. And that just isn’t going to work.
If that makes sense, which I have no idea if it does.
Anyway, the point I’m trying to drive at is that Isaac’s personality already lends itself to being outgoing, friendly, and excited about interacting with the world. And I think that this sort of therapy wouldn’t be great for a kid who’s the opposite, who’d prefer to sit down and read a book or draw a picture instead of telling you about Also I Found A Stick Shaped Like A Y.
And the second, which remains the reason I sort of stay aloof from a lot of Autism MomsTM, is parental wants and expectations. I have a really good friend whose son has autism and is about two years older than the twins, and she’s been kind of a mentor/guide for me whenever I’m like “AAAAH WHAT DO I DO ABOUT THIS???” One of the things she told me that helped me the most was that ultimately, therapists work for you, and I think that’s been enormously helpful in making ABA a positive experience for us.
At the beginning of Isaac’s therapy, we talked about what our goals were for him, and Kyle and I expressed that we just wanted him to have a way of communicating with us. We didn’t–and still don’t–want to take away his stimming or force him to communicate in a way that doesn’t work for him (e.g., if he’d really struggled with talking, we’d have been perfectly happy to work with PECS or to learn sign language or whatever he needed). Our therapists have been really respectful of that; Y, in particular, hsa been fantastic about incorporating Isaac’s stimming into his therapy (like how she taught him to say, “ready, set, go!” by preceding a moment of spinning with those words, and now they’re his favorites).
There’s a lot to unwrap about therapeutic goals coming from parents, because I’ve no doubt that there are plenty of less than reputable agencies eager to make a quick buck or adhere to some weird guidelines who will pressure parents into setting goals that aren’t fair for their kids. Kyle and I tend to be immovable rocks when it comes to our kids’ best interests (e.g., if you can’t present a very strong, very scientifically backed, peer reviewed reason for changing our minds, we’ll be showing you the door), but when you’re overwhelmed by a diagnosis or don’t understand what autism is, it can be easy to find yourself steamrolled.
And at the same time, there’s a lot of pressure in our society towards conformity; not necessarily towards sameness, but rather towards not getting too far outside of the mold. Even without external pressure, I feel like parents can have an internal need to “normalize” their kid as much as possible, and again, that can lead to some… mmm, wonky therapeutic goals.
So I guess my overall takeaway with ABA so far is that (a) it’s not for everyone, and less cookie cutter therapeutic approaches should be researched and covered by insurances; and (b) parents of autistic kids need to be educated and empowered to set therapeutic goals that don’t erase their kids’ neurodivergence but instead give their kids the tools they need to lead healthy and fulfilling lives.
Tangentially related, the twins have been on a Sesame Street kick lately (just the old stuff, though; I don’t know who’s who on the new episodes, and I don’t have the mental real estate to learn just yet) and have continued to prove my hypothesis that old school Sesame Street creates early readers. Between that and the Number Blocks on Netflix (highly recommend both, btw), both twins can count to at least thirteen (and, if you accept them repeating thirteen several times before shouting “TWENTY!” they can also count to twenty) and have started learning their ABCs. Carrie is particularly blowing my mind by (a) singing the whole alphabet song by heart, (b) learning the signs for all of the letters, and (c) recognizing letters and numbers by sight.
Which isn’t half bad for a pair of 34 week technically developmentally delayed preemies 🙂
I think the wildest thing about locking down is that it feels like there’s nothing new to report ever about anything. Stuff is happening, sure, but it’s like being in a major depressive downswing, where it’s all happening in this void of nothing. Days are all bleeding into each other, to the point where I told like three or four separate people today that Monday is Memorial Day.
Stuff is happening! It just is happening in this void that’s usually relegated to memories. Like you know how most of your memories kind of bleed together so you know that a thing happened, but you don’t know specifically when? That’s what it feels like.
It’s like my memories of my choir tours back in college. In four years, I went on twelve choir tours in a huge bus driving all up and down the eastern seaboard of the US, and while some of them are very specific place-related memories (like obviously, that time we went to the beach on Cape Cod was during a tour on Cape Cod), most just sort of blur into a “I know this happened, but I don’t really know when or where.” When did I stay at that person’s house? What year was it? Was it in Pennsylvania or New York or Virginia? Was it in the spring or the fall or the winter?
(if you were in A Cappella Choir at ENC, you know what I mean)
Stuff is happening. Sam’s birthday happened this week! I have a six-year-old now, and it’s crazy. For the most part, there’s very little difference between Sammy the six-year-old and Sammy the five-year-old, except that Sammy the six-year-old has Minecraft guides that he likes to read aloud to us at all hours of the day and night, where Sammy the five-year-old did not have such guides.
I think he had a pretty awesome birthday, all things considered. We’d been promising him for something like two years that we’d have his birthday party this year at our local indoor play place called Luv 2 Play, which is just that kind of McDonald’s Play Place gone wild, Discovery Zone type adventure land, with ball pits and climbing structures and arcades and pizza! It’s like Chuck E Cheese but so much more! And they’d literally just opened a month before the lockdown went into place and then the lockdown happened and so much for that.
So I knew the potential for disappointment was high and because of that, I went a little overboard with the stuff we could do. Our local police department had a program in place from about the time the lockdown started where they’d come to your house for your kid’s birthday, lights flashing and sirens wailing, and I signed us up for that. Sam was super shy about it, but he was also beyond happy, and he got to sit in the front of and pretend to drive a squad car (his comments on it: “Wow, there’s a lot of stuff in here! It’s a mess!”).
I baked him a cake, as I always do, and even though it looked sort of a mess, it tasted great. Black frosting, as he requested, plus Minecraft decor, as he requested, though my favorite part was the Lego brick candles I found on Amazon. Guarantee I wouldn’t have thought to use those if I hadn’t been scrambling to try and find ways to create a spectacular cake for my big guy to help him with what could’ve otherwise been a really sad birthday.
AND. His best friend’s mom got in touch with me and we planned for them to drive up to our house so Sammy and his best friend could see each other. I think that was my favorite part of the day. Sam, being six, says that his favorite part of the day was getting various toys, but I think what really sticks in his mind was seeing Hunter and getting to talk with him, even if they had to stay apart through a car window.
So it was a success, despite everything, and I’m relieved.
Stuff is happening. We broke down our old couch and chair because the furniture outlet we’d gone shopping at literally days before the entire state shut down called us and said, “Hey, are you going to have your couches delivered or what?”
We’ve needed new couches for ages because our living room furniture was not only purchased in the era of “well, the Båckachë model from Ikea is affordable” but has broken in multiple ways and multiple places. It was ugly and stained and had ceased to be comfortable by any definition.
And we had a pretty nice tax return this year and figured, hey, Kyle’s gainfully employed and even though he has to work from home now, we should be fine through this pandemic!
Anyway. We needed new furniture, so we bought new furniture; but when everything went into lockdown, we thought we’d have to wait until whenever restrictions were lifted completely to have it all delivered (since we just did what’s called “threshold” delivery, which means they basically yeet the furniture at you from the back of a moving truck). But no, apparently they’re doing deliveries again, so we’ve broken down the old sofa and rocking chair and made our living room empty and ready for a sofa, loveseat, and coffee table.
(it looks a lot emptier now that we’ve cleaned up all the toys)
It’s wild. Even in this time that feels like miles of endless nothing, I’ve somehow reached the age where I have a coffee table. A really nice one, too!
Isaac is still having his ABA, which is great. He’s so much calmer and happier, and he’s been getting along so much better with Carrie. He’s gaining words, and though he doesn’t necessarily use them unprompted (i.e., he won’t do like Carrie does and point to a picture of something yellow while saying “yellow”), he still has them, and that’s important. He doesn’t melt down as often as he had been, and he’s just… he’s really doing so well. He’s still very obviously autistic, and I’ve made it clear to his therapists and their office that I am perfectly fine with him stimming, with him being obviously autistic; but he’s learning to communicate better, which is helping him both in the short term and in the long run. He’s better able to express his wants and needs, and because of that, he doesn’t get frustrated so easily.
Which is good.
And then for me. Despite not being able to actually physically go to a doctor’s office, I had a breast cancer risk assessment screening thing last week. It wasn’t a huge deal, just something my OB-GYN had recommended because I have a lot of aunts who’ve had breast cancer and other cancers, on both sides. When that’s your family makeup, you want to get yourself assessed, just to make sure that you’re not missing something.
To nobody’s surprise, I’m sitting right in the middle of the high risk category, which doesn’t necessarily mean that I’m 100% going to get breast cancer, nothing I can do about it, but rather that I need to start being screened more frequently as soon as possible so that if anything does pop up, it can be caught ASAP and stopped before it turns into something unstoppable.
Naturally, with the world locked down, that basically means that I have to hurry up and wait. I received a packet in the mail talking about my risks and medications I could take (that decreased the risk of breast cancer, but also increased the risk of blood clots and uterine cancer, so I’m like ??? that sounds like the opposite of helping?), and I have a note on my chart about getting a mammogram as soon as I can. And I get to follow that up with an MRI and just alternate mammograms and MRIs every six months until I die or someone chops off my boobs or something.
(true story: if I could donate some boob to someone who wants to have more boob, I totally would)
All of this has happened in the last week, since the last time I wrote something, but it feels like nothing is happening. Tomorrow is Saturday, I know, but beyond that? Who even knows? What even is happening? Everything is happening, and it’s all a big, meaningless void of nothing.
And yet, I’m still in favor of keeping locked down as long as it takes to get some sort of actual plan in place or get our act together on treatments and vaccines and whatever the fuck we need because this is not a pleasant illness. I hate being locked down, and if by some miracle, there was no more Covid-19 tomorrow and we could all frolic about freely, I would be the first one out of my house. I want my son to be able to go back to kindergarten and see his friends and finish out the year. I want to take all three of my kids to their well visits without having to wrestle with masks. I want to know without a shadow of a doubt that our trip to Disney World in November is happening. I want people to be able to go back to work. I want to get my roots touched up.
Like that’s the thing. I feel like there’s this misconception that if you’re in favor of things being locked down, you’re having a blast being cooped up inside and don’t see any downsides whatsoever. That is the opposite of true. I am hitting a yellow wallpaper point. I’m worried about the longterm ramifications of the way the world is right now for all three of my kids, regarding not just their educations but also their psychological stability and the economy they’ll be inheriting.
But I also don’t want people to die. I’m generally in favor of that not happening. People die every day, of course, but if we can reduce the number of people dying, I’d like to do that.
And then like… I talk about returning to normal and, okay. I’ve seen the post, too, about how our previous “normal” is what has this country being the laughingstock of the world with how we’re handling this. I don’t want that. When I talk about returning to normal, I mean I want my son to be able to see his friends at school and be taught by someone who’s trained to teach kindergarten rather than by me saying “what the hell is a digraph” during a Zoom call. I want to go to well visits at the doctor to catch problems before they’re major. I want to be able to say, “hey, let’s go visit so-and-so” or “hey, let’s go to the playground” or “hey, let’s go get ice cream” and then do that thing.
But I also want the things that would provide a safety net in situations like this–things like universal healthcare, universal basic income, significantly higher pay for teachers, a living wage for everyone, general compassion and caring for our fellow human beings across the board. I want that change. But I also want the normal of being able to pick up my kids from the school bus after they’ve spent a day with their friends.
I hope that makes sense.
I’m not going to debate anyone about it if you disagree.
But I do wish we could find a nice balance between “endless lockdown because we don’t know what we’re doing” and “we’re just going back to business as usual and screw people if they get sick.”
As it turns out, ABA is considered an essential service by our state, so whether it’s wise or not (I’m leaning towards “eh?” because it’s a single person and we make her wash her hands before she interacts with anyone), we’ve started Isaac’s ABA. This is also, at least in part, because nobody knows when things are going to get back to anything resembling “normal,” and I don’t want him to miss out on any therapy he needs or be super duper behind in the coming years. Autism therapy services are notoriously hard to schedule and nail down (like forget finding someone who’d do Floortime or RDI, they’re basically booked years in advance, and I guarantee they are not covered by our insurance), so it feels like waiting at all is walking a very fine line between logical and bad idea land.
I’ve written before, too, how the idea of ABA made me nervous, and it still does because we’re not technically in the therapeutic part of it yet. The first week, as our BCBA (who is basically the services coordinator) explained to us, is all about getting Isaac used to his therapist (currently Yesica, later Kathleen) and attached enough to her that he’ll actually be interested in the therapy and not spend the entire time burying his head on my lap like he did on Thursday. Things will 100% change when we get to the actual therapy part of therapy, but for now, I’m feeling encouraged.
On day one, Yesica and our BCBA Jessica (it was confusing) brought in a big locked trunk of brand new toys that they’d scrambled to get (because literally nothing is open right now, and the places that are open are mostly just stocking essentials). The toys included a lot of typical toddler toys like stacking cups and boxes with shaped holes and crayons and a noisy firetruck. The idea with these toys is that they live at our house and only come out when Isaac’s therapist is here; that keeps them fresh and interesting and special, so that Isaac isn’t just using them all the time and not associating them with therapy.
Our therapist is here from 9 a.m. until 11 a.m., five days a week, which may be a little much for Isaac (though the doctor who diagnosed him suggested at least 10-15 hours, probably more), as he basically hits his limit around 10:30 and spends the rest of the session on my lap, staring off into space. Which, yeah, fair. I’ll admit that if I had someone pulling me into interactive play all the stinkin time, 90 minutes would be about my limit as well, and I’d probably be like “OH I NEED TO GO PEE, BE RIGHT BACK” and then hide in the bathroom on my phone until two minutes before they were scheduled to leave, at which point I’d wash my hands, come out, and be like “OH MAN SORRY ABOUT THAT, YOU KNOW HOW IT IS.”
(this would only work once, but I’d do it anyway)
And basically, for the last week, it’s just been playtime for those two hours. Yesica encourages Isaac to play with different toys and tries to get him to talk while they’re playing. She’ll help him to sign for “open” or encourage him to say “help,” and whether it’s because he’s just reached an age where that works for him or whether it’s because of the therapy, it’s working. He does regularly sign for “open” and he does regularly say “help,” and it’s really nice to see. He’s also been trying out more and more words lately, which we celebrate loudly every time there’s a new word in his vocabulary. Cake, tada, buzz, wow, light, things like that. I feel like a switch got flipped in his mind, where he’s like “oh, I can make words too! Cool!”
The best part of ABA so far, though, and the part that’s given me the most peace about the process is how Isaac’s therapist has incorporated his stimming into his therapy. Instead of trying to discourage it or stop it from happening, she’s been encouraging it and using it to teach him things. She’ll pick him up and say, “ready, set, go!” and then help him spin around, and it’s worked to teach him to respond to “ready…” by saying “set, go!” Earlier today, he was sitting on our rocking ottoman and rocking himself, as he does, so she worked with it. She rocked the ottoman for him, and then stopped, while teaching him the words “stop” and “go.”
This mostly gives me peace because I didn’t want any part of this to mask or erase Isaac’s autism. It’s who he is. He will never not be autistic, and that’s wonderful. I don’t want to ever teach him that’s something he needs to hide or pretend he isn’t. He is who he is. And so far, even though it’s only been a week, they seem to be embracing that. I’ve got fingers and toes crossed that they’ll keep it up as we progress through therapy, into the coming year and into his eventual transition to preschool next spring (please, please, pleeeeeeease let this pandemic have calmed down some by then).
I’ll keep talking about this, because when we started to go into ABA, I felt like there weren’t any “middle of the road” perspectives out there, where the parent talking about ABA wasn’t wanting their child’s autism to be cured but also was seeing the necessity of some therapy to help their kid cope with a very noisy world that needs words. And so far, that seems to be the mindset of our therapists as well.