Progress

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 🙂 

Stuff is still happening

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.

It’s not. 

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!”). 

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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. 

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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. 

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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!

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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. 

97101404_10157206797540592_2838004347839709184_o(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. 

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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.” 

Sigh.

Week One of ABA

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. 

One Month on the Inside

The weird thing about lockdown is that not much changes from one minute to the next, even when it’s been a full month+ of hanging out at home all the time. On the plus side, I can safely say that I did not get Covid-19 when I last went to the store back in March. On the minus side, literally everything else.

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The only big thing of note is that Isaac has, despite the lockdown, started ABA therapy. ABA is apparently considered an essential service, so we have his therapists scrub down as soon as they come in the house, and since Isaac is the first kid of the day for them, there’s no huge worry that they’ve gone and gotten something and brought it to us. 

Today was day 2 of ABA, and it went… alright, I suppose. We’re still in the “let’s play so he gets used to us and then we can start therapy” stage, so it’s mostly two hours every day of unguided play with a box of toys that doesn’t leave our house but also only comes out when it’s ABA time. Carrie participates as well, which is sometimes good and sometimes bad, but both of our services coordinators pointed out that her participation is pretty important, because Isaac lives with her, so he needs to learn all of the things he’ll be learning in context of her instead of just in context of a therapist and one or two parents. 

The box of toys is all pretty easy stuff–shapes boxes, crayons, stacking toys, a firetruck. Its primary appeal is that it only comes out during ABA time, so even though the kids are playing with those toys every day, they still have some novelty to them. And it’s a plus because between Isaac “cleaning” (read: throwing every single thing he owns into the gated space between the TV and the rest of the living room) and Sam sweeping things out to the dining room/playroom with him, most of the twins’ toys are. Missing. 

Sam continues to take this entire situation harder than the rest of us. It’s a huge and difficult change for anyone, and I don’t know a single person who’s looking at the state of the world currently and getting super excited about it, but Kyle and I are at least adults with coping skills. We grumble, and we’re anxious, and when I think about the Worst Case Scenario, I have a panic attack (which is super convenient, because do you know what happens when you have a panic attack? You can’t breathe, that’s what happens, so it sends you on this delightful spiral that never ends :D), but for the most part, we have coping skills. We can conceive of restrictions lightening somewhat, and we know that if we do get sick, odds are that we’ll be fine. Hell, we’ve even got a theory that the bug that took me out for most of January and February (remember that?) was Covid-19 but nobody expected it around then, so nobody knew.

But then there’s Sam.

It’s rough on him, of course, because he’s lost school–at the very least until May 4, possibly for the rest of the year (I would be surprised if school starts up again before September). He’s lost that daily connection to his friends and teachers, his routine has been thrown to the wind, and although he’s kept his academic progress (we check in daily, he does his work, he’s doing just fine), I feel like he’s lost a lot of the non-academic stuff that kindergarten teaches you. Worse, he’s five, so he has no coping skills for just about anything. He’ll be alright for a few days, and then he’ll just completely melt down and sob and throw hours long tantrums, and when we ask him what’s wrong and how can we help, he can’t explain it. 

And we know. He’s scared. He’s lonely. He’s sad. He’s angry. He feels what we’re all feeling, but he’s only five, so he doesn’t have the same coping strategies we have as adults, and it’s heartbreaking to watch.

(but hey, at least his eventual therapy won’t be mostly talking about how he’s messed up because of his parents, so that’s a win!)

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I see people protesting because they want to go get haircuts and go to Applebee’s and go back to this arbitrary “normal” they imagine existed, but I’m here hating lockdowns because I can’t help my kid. Yes, it’s hard not being able to go to the mall on the weekend or even just visit my parents. Yeah, I’m frustrated that I’ve had to try and reschedule about 42 doctor’s appointments in the last couple of weeks. But I’m most worried about my son, and I’m most worried about people who needed those nonessential jobs to pay their rent and get groceries and now have to make $1200 stretch for who knows how long?

I’m trying really hard to be optimistic and know that things aren’t going to last forever. By hook or by crook, 2022 seems to be the date that the experts are saying “okay, if normal even existed, look for it then.” Which is A REALLY LONG TIME to be having periods of lockdown and not lockdown and lockdown and not lockdown, but okay. 

And humans have this neat superpower of being really adaptable. We’ll find ways to make school happen and we’ll find ways to continue seeing our friends and family and we’ll find ways to reopen various things (because CAPITALISM, gosh darnit!). I know eventually, humanity as a whole will adjust.

But I’m looking at the damage happening in the meantime and feeling awfully sad that some of it could’ve been avoided and some of it couldn’t, and basically, this continues to suck.

BUT. We did get a new iPad so that Sam could do schoolwork and socialize, so there’s that.

Clinging

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words-
And never stops – at all –

And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –

I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.
(Emily Dickinson, “Hope is the thing with feathers (314)”)

I was initially doing okay with all of this, and ultimately, it was the thought of a longterm social distancing adventure that drove me to snap with rage that disappeared as quickly as it had come. 

tenor

(this happened, like, a week and a half ago)

I can’t remember what set me off, but I think it was Kyle saying the words “…if Disney World is even open by then” about our trip that’s coming up in November. The idea of living life like this the entire rest of the year just made something break a little in me, and I sort of snapped at him in that way moms do when we’ve been carrying it all inside to keep the rest of the family from seeing, because it’s fine to vent to your partner when they’re available, but the emotions show up whenever anyway, and you tamp them down because you don’t want your kids to be scared or pick up on you freaking out.

But eventually, the dam breaks a little.

I snapped, and then it was gone, and I’ve been about as fine as I can be, considering the circumstances, ever since.

That sounds like I’m dismissing things, and I’m not trying to. I’m feeling the emotions everyone’s feeling: grief over the world changing overnight into something unrecognizable. Rage about politics. Fear about what’s coming next. But I feel like I’ve got a better handle on it than I did before, when I was still hovering in the “denial” stage of grief about everything. 

(and anyway, I will eat my hat if Disney isn’t open in November)

Which is all good, because we’re kind of floundering a lot with many bizarre emotions in this house.

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Anxiety is, understandably, the big one. I think I’ve got an okay handle on that because yay, antidepressants. Venlafaxine will probably be the reason I go crazy if the world ever does end properly, but for now, I’ve got a healthy supply of it, and it turns my anxiety into either really vivid crazy dreams or just really pleasant but unrelated dreams. Last night, I dreamed about characters from the soap opera One Life to Live, which I never even watched when it was a thing that was on often. The dream also took place in a therapist’s office, but that’s it. Nothing otherwise notable about it. No portentous 19 crows or anything like that.

Nobody else in this house is on antidepressants, which creates some interesting situations, most of them with Sam. He doesn’t have a completely firm grasp of what’s going on, but he knows that he can’t go to school, he knows that his school year is probably over as he knew it (they’re saying schools are closed until May 4, but I’ll be very surprised if they reopen before summer break), and he knows he misses his friends and teachers.

So, of course, he’s scared.

It mostly comes out at night, and he’s too old for the magic jar of dirt stuff I did when he was younger. Too smart, too. He doesn’t believe it when I rub lotion on his hands and tell him it will protect him from bad dreams, because his anxieties are too big to be vanquished with some love and lotion. He knows that the world isn’t the same, and will never be the same again, and it scares him. 

He gets out of bed every night after he’s been tucked in. We talk to him, we hold him on the couch, we tell him the truth, but we sprinkle it with generous doses of hope, because he needs that. Still, he’s scared. 

He’s kind of shut down about homeschooling, and I’m not sure what to do about it; worse, I’m sort of limited in what I can do about it. He’s in kindergarten, and he’s covered most of the basics he’ll need before first grade in the fall (this will have reached some sort of equilibrium by fall or I am punching this virus in the face myself), so I’m not terribly worried about him falling behind… but I still want to try and help him learn things while he’s at home. 

He does alright for about two days when we give him a new routine, but then on day three, he decides he doesn’t like this anymore and has a meltdown. Which… okay, fair. Maybe he should just have Wednesdays off or something? The routine was, briefly, some yoga and then a video about a subject he liked, writing a sentence about the subject, then doing math. And, of course, forever checking his messages on Facebook’s messenger for kids (he’s got a long distance friendship blossoming with my friend’s daughter, and it’s basically destroying me with cute). 

I feel bad. I wish that I could be 100% there for Sam, but the twins are another adventure during this, my everyday adventure that hasn’t changed in the slightest, except that Kyle is home for that adventure all the time now, so lunch and naptime are both easier.

But the twins seem to sense that something’s amiss as well. They don’t like to not be on my lap, which makes trying to help Sam with literally anything a struggle, particularly because the twins are not small anymore. They’re two now, had their birthday less than a day after the state started shutting down altogether. Our plans to take them to the aquarium were dashed.

Everyone senses that something’s up, and nobody can really parse their feelings on it. I can’t either, but I’m trying to at least throw positive shit out into the world to see whatever glimmers of hope will stick. 

That mostly happens outside. When the weather permits, we throw jackets on the kids and take them out to the front lawn to run around for a little bit after dinner (the backyard is a disaster area, and before all of this, we were going to see about hiring someone to clean it all up for us).

The twins like to run to the edges of the yard and get caught. Carrie especially likes to look at our crocuses nosing up through the dead leaves and greening grass, and Isaac likes to watch trucks rush past on their way to the farms up the street. 

Sam likes to run, just run. He runs from the porch to our big oak tree back to the porch then to the mailbox and back to the porch and to the lilac bushes and back to the porch. Being able to run with abandon helps him, I think, because our house is not a jungle gym, no matter what he thinks.

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I try to plan for Easter, such as it is. We have candy from the Easter Bunny, or at least half of what we’ll need (the other half I need to order from our local candy shop, which is taking orders but not in store shopping). The kids need nice Easter shoes, because even if we’re not DOING anything, I want them to look cute. It’s the twins’ first Easter able to do anything besides be confused about “why is this basket on my desk?” 

I mean, they’ll still be confused, just about more things than “why is this basket on my desk?”

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Nothing is normal, but it’s the new normal for at least the next month, probably longer, at least if people are smart about this. I’m still working through my feelings about everything, kind of picking at them a little bit day by day and seeing how my dreams/nightmares play them out. I think the only real waking fear I have is not about famine or a lack of toilet paper or anything like that but of getting sick myself, knowing that my lungs are kind of crap and that, at the very least, I’d likely be one of the young people ending up in the hospital and on a ventilator, away from my husband and kids for weeks on end. Without the kids, I think I could stand it, but just knowing what it would do to them…

I have a friend who’s an RN in an ICU, and even though I don’t really pray, I pray for her, to anyone or anything that might be listening. She has three kids, just like I do, two boys and a girl. She can’t even snuggle with them anymore, not until this has all passed, and it breaks my heart for her. 

Basically, I just want everyone to hurry up and stay home and behave. I saw a post earlier about this whole thing being like when you were in elementary school and some kids just wouldn’t stop acting up, so you kept losing more and more recess time, even though you weren’t doing anything wrong. Maybe it wasn’t fair, but the teacher couldn’t let the kids who were behaving outside while she stayed inside with the kids who weren’t behaving. So you watched as the bright spot in your day was gradually eaten away because people didn’t know how to act. 

Maybe it’s because I tend autistic, or maybe it’s because it’s in the nature of the oldest child to loathe getting in trouble for something not your fault more than for other kids (like we all hate it, but I think we oldest children hate it the most; I can see the loathing building in Sam’s mind every time we scold him for something the babies are doing too, and I have to remind him that he’s older and knows better), but GOD did I resent those kids. I don’t resent the dumbasses still going out and being Typhoid Marys around the world nowadays, but I do wish that someone would throw dirty diapers at their heads.

I think about them, and I think, “This stupid thing is just going to keep going, and it’s going to be 2021 before anything is over, and we’re going to just have this long, miserable time because people don’t know how to act. There goes everyone’s recess. There go people’s lives. Womp womp.”

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I let myself think that, and then I take a deep breath.

And I say, the first thing I’m doing when this is over is packing the kids up in the van and going to spend a day with my parents. 

I plan for going back to group with Isaac and Carrie and letting them play with all the plastic toys and watching them do more art and wreak more havoc, but this time, it’ll be slightly different havoc because Isaac will have his ABA therapist by then (let’s not get into that can of worms right now, I’m so tired). 

I imagine having a weekend day again where I go up to Michael’s and get whatever craft stuff I want for whatever dumb project I’ll never finish. Like maybe I’ll get photo albums or start scrapbooking or something, or at least think about it. And wandering through Barnes & Noble, enjoying the smell of ink on paper and coffee. And going to see a movie, taking all the kids to whatever crappy kids’ movie is out because we’re free to do so. 

And eventually going out to the mall, walking those long stretches of gleaming tile and popping my head into my favorite stores. Getting a free chocolate from Godiva. Setting the kids loose in the indoor playground after patiently wandering the Lego Store with Sam. Eating something that’s wretched for me from the food court and just not even caring. 

We’ll go to the beach this summer, plan it out a little more than our last trip. We’ll bring quilts and set up a full little camp on the sand, and take off a weekday to go (after all, Kyle has been working 7 days a week the past two weeks; who knows what it is about tech companies that drives them to think, “Ah, you’re working from home, that means all your hours are mine!”) so things will be less crowded and we can get a spot closer to the water.

(probably not Hampton Beach this time, though)

And we’ll have our road trip, in the fall or next fall, one or the other. We’ll pack the kids up in a rented van, we’ll see the roads, we’ll stop for gas and goodies. We’ll take 95 all the way down. We’ll stop at South of the Border, because I’ve always wanted to go but never have. We’ll see enormous fields of cotton and black eyed susans on the sides of the road. We’ll stay on the beach and then we’ll drive to Disney and we’ll be in that delightful bubble for a blissful week. 

This will happen, it will all happen eventually. This is what I think about to keep myself sane, because things are really hard and really scary right now, but it’s not forever, and in the end, we’re all in this together.

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Can I be blamed if I’m angry?
Can I be saved if I’m barely clinging to hope?
I’m clinging to hope

When I say oh, oh
Rain don’t change the sun
Jealous is the night when the morning comes
But it always comes
(Delta Rae, “Morning Comes”)

 

This Damn Week: A List

  • On Saturday, Isaac got norovirus.
    • We did not know, at the time, that it was norovirus.
    • We thought he just had a cold and had too much mucus in his system and it was just coming out all ends.
    • So we took him to the ER because he couldn’t keep fluids down.
      • He could have been there for two hours so that the Zofran would work and he’d be able to drink again.
      • By hour five, Kyle called me to ask me to bring Isaac’s usual bottle so that he would drink the fluids.
      • So my mom came to put Sam and Carrie to bed while I drove all the way to the hospital.
      • Only for Kyle to call as I was about to turn into the parking lot and say that just kidding, Isaac just drank the whole bottle.
  • Kyle and I were supposed to go on a date Sunday afternoon, but since Isaac had norovirus, that was out.
    • Instead, my dad came over and ate cake, and that was fine.
  • Monday was a holiday, and that was fine.
  • On Tuesday, Kyle worked from home. 
    • Which he does every Tuesday.
    • So when he finished work, he decided to take Sam to our local CVS to get a flu shot.
      • Despite having lost three hours of work to a random power outage halfway through the day.
      • (it was also pouring rain)
      • They were also going to buy groceries.
    • While they were gone, Isaac vomited profusely. 
      • It was impossible to clean.
    • And Sam couldn’t even get his flu shot because the power outage had caused the clinic’s supply to go bad.
  • On Wednesday, things mostly seemed normal, except I wasn’t hungry.
    • But mostly things were okay. 
    • My mother visited for an hour in the afternoon, and I had dinner with the kids.
    • After dinner, the kids started climbing on my lap.
    • I started feeling seasick.
      • Uh oh.
  • After Kyle got home, I barely made it upstairs before I, too, fell victim to the norovirus.
    • Cue six straight hours of running to the toilet every twenty minutes and not being sure which end was exploding.
      • (sorry)
    • And after that, cue the next eighteen straight hours of brutal muscle aches and a low grade fever.
    • Norovirus is a bitch.
  • BUT THAT’S NOT ALL!
    • Kyle and I share a toilet.
    • Sharing a toilet is a good way to pass norovirus from person to person.
    • About twelve hours after I first got sick, guess who also got sick?
      • (it was neither Sam nor Carrie)
  • So now we have two adults sick as can be, zero backup because we’re not inviting people into our plague shack, and three hyperactive children.
    • Child Sam is on break from school and will not stop running and scream singing “DIGGY DIGGY HOLE” all the time.
    • Child Isaac is HUNGRY but he’s also not 100% feeling better so he’s ANGRY because he doesn’t want any of his usual favorite foods and he’s very tired of Pedialyte.
    • Child Carrie is playing with Child Sam all the time at 9000 MPH and scream singing either “INTO THE UNKNOWN” or “BABY SHARK” while running around the living room.
    • My head.
  • Everyone finally seems somewhat recovered today, Saturday.
    • (this after completely losing both Thursday–when Isaac was supposed to have his ABA assessment–and Friday to illness)
  • Kyle and I feel well enough to start cleaning up after our illness.
    • We start a load of laundry.
    • When Kyle goes to switch the laundry, he discovers that the water did not drain.
    • He tries to fix the washing machine.
      • He finds $5 in change!
      • He does not fix the washing machine.
    • We cancel tonight’s D&D session so one of us can go to the laundromat.
  • At bedtime, we’re changing Isaac.
    • He has hives.
      • Wtf?
      • We have not started new foods.
      • We have not used new detergents.
      • He is not on new medicine.
    • So we call the nurse line.
      • Nurse line says that this can happen at the end of a virus and we should give him Benadryl.
      • Cool.
      • We don’t have Benadryl.
    • Everything gets pushed back an hour or so while we hunt down Benadryl and give it to him. 
  • Kyle just now got home with the laundry.
  • It is 10:30 p.m. on a Saturday.
  • I need a vacation.

Two of them

It’s coming, sooner than I want it to, mostly because I feel wholly unprepared.

It, of course, is my life as a stay-at-home mom of two two-year-olds. March 14, the twins turn two, and even though it won’t technically be all that much different from the day before, things are already starting to take a turn for the chaotic.

The biggest preview of things to come happened about two weeks ago. As part of Isaac’s therapy, we’re taking him (or trying to take him) to a parent-and-child group through our local Early Intervention center. I’d tried it before, when the twins were really young, but it hadn’t worked out because being a singular mom hauling around two babies with the exact same needs is… well, it’s rough. 

The twins were, I believe, barely past 5-6 months old at the time, not quite sitting up independently yet, and certainly not in a place yet where I could really settle them down and let them frolic. I mostly just sat on the floor, cross-legged, with the two of them lying in front of me, immobile and baffled by the suddenly crazy world around them. The other parents were chatting back and forth about how their kids were doing–this one had a GI appointment later this week, that one was finally taking a bottle without any struggle–but I could barely pay attention for more than a few seconds because the twins just. Didn’t want to be left alone on the floor. 

I couldn’t do it alone, I realized. Whether it was because of my own sensory issues making classroom settings stressful for me (too. much. talking.) or because having two infants and one parent makes doing things impossible, I couldn’t do it alone. And anyway, we didn’t really need group back then. It was mostly a playgroup for parents to come and talk about their struggles and get support, and while I’ll be the last one to suggest I don’t need support, I prefer the one-on-one kind or else support in chat windows. Face-to-face support is… stressful. 

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But then Isaac got his diagnosis, and one of the recommendations from his doctors was some sort of playgroup. Right now, he’s just old enough for the parent-and-child group, like before, and because Carrie is also in Early Intervention (at least until she stops being a little turd during evaluations and shows people what she can really do), she gets to come along, too. It’s a two hour session, once a week, and because Kyle works, I’ve asked my mom to join me on group days (which is great because half of the other adults there are grandmas as well) because otherwise, I wouldn’t be able to do it. And she’s graciously agreed to join me, and it’s all fun, we expected.

Except. The first day of group, she got a stomach bug, and she got it right as I pulled up to the center.

So I tried it alone again.

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What you first must understand about having twin two-year-olds is that unless a place is easily accessible by stroller, you’re going to have a helluva time getting in. I was recovering from bronchitis at the time (more on that in a second), and I had to haul these two children, neither of whom wanted to be carried, down a couple of flights of stairs to the classroom. I don’t blame the EI center for this, since they technically do have access around the back of the building, and they have an elevator as well (“elevator” in this instance meaning “manager’s lift from back when it was an industrial building”). I mostly blame my thought process of “well, we’ll just go in the front door because that’s less of a hike than walking around back.”

So twin two-year-olds down two flights of stairs, both of them wanting to get down but also not wanting to let go of me, and there’s no space on the stairs for any of us whatsoever. We finally got down to the classroom in time for the end of free play, and the twins had their first encounter with washing their hands in a weird place. By this age, Sam had been in daycare for about a year, so he was an old pro at washing his hands in strange places, but the twins have mostly just seen the inside of our downstairs bathroom and me coming after them with wipes. Carrie wanted nothing to do with the process and screamed and cried and refused to get her hands wet. Isaac, on the other hand, kept climbing up the step stool to play with the faucet again and again and again. 

Now here, one might ask, “well, why didn’t you pull him away?” or “why didn’t the teacher pull him away?” and I might say, “because my hands were full with Carrie, who was melting down utterly; and because the teacher had half a dozen other children plus the classroom schedule to take care of, as this is a group that has a more one-on-one dynamic.” 

Yes, Carrie was melting down, though Isaac recovered quickly from being prevented from making his dreams of flooding the room come true. He spotted a peg board like one we have at home and set to work making the tallest possible tower of pegs. Carrie, once she’d adopted a pouting acceptance of her fate, dutifully marched around the room to see what toys she could see, often coming over to sit on my lap and cry against my shoulder some more at the misery of it all. 

They both finally shuffled over to the play kitchen, which pleased me–they love watching me cook, they love watching cooking videos, and now they were getting a chance to try it out for themselves. Isaac hummed and babbled to himself as he tossed plastic ingredients into a pot (carrot, fried egg, doughnut?), and Carrie became… oddly enamored of a plastic spatula and a plastic watermelon slice. For a few minutes, they were very happy. 

I, too, was happy–happy enough to play with the Little People someone had scattered on the floor by my feet. I set up a summoning circle, and the Little People called forth the Little People Pope in his Little People Popemobile, and it was great.

And then, it was time to stop free play. 

The other kids were, I think, seasoned pros about this, or at least more of seasoned pros than either Isaac or Carrie, whose days at home have all the structure absurdist literature, which is to say little to none. Their switches between activities at home are fluid, and I don’t make them put away their toys before settling them in their high chairs or bringing them up to bed because I am tired and I don’t want screaming. At group, however, once free play is over, the free play toys need to be put away. Isaac was fine with this (hilariously, my autistic kid had the least issue with change) because he loves cleaning up, and seeing that these New Toys also had a Place basically made his life. 

But Carrie.

Dear, sweet Carrie. Carrie, who has developed an almost obsession with me lately, where even if I just step outside the room to go to the toilet, it sends her into a meltdown. Carrie did not want to give up her spatula and watermelon. 

I’m pretty sure I did it wrong. I asked nicely for the toys and, when she wouldn’t give them up, pried them from her vice like grip, which resulted in another tantrum. And I say tantrum, rather than meltdown, because there is a difference between the two. She wasn’t overtired or overstimulated, she just wanted to hold onto those two toys in particular and having to give them up made her Very Angry. It didn’t matter that it was circle time, and circle time meant songs. It only mattered that fuck you people, I want my spatula and my watermelon. 

And all the while, Isaac was running around the rest of the room. He discovered the trash can, which the teacher promised would be put away the next time we came (but for that time, it was not put away, and Isaac liked how the lid flipped around). 

I tried, I tried so hard to wrangle them both to the circle, but I could only hold onto one at a time. When they’re calm, I can do both. They rest their heads on my shoulders and conform to my body, and we’re happy. But Carrie was angry, and Isaac was excited, and their existence was chaos given form. Letting go of one to catch the other made it worse. Other children in the circle were less than happy to be there, but those other children had a parent apiece to keep them from running amok. Isaac and Carrie just had me. 

(sidenote here: I’m not mad at my mom for not being there; she got sick, and that happens. I’m just recounting how crazy it was and how it’s helped me realize that oh man, am I in over my head)

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Circle time was all about songs, with the kids who’d been there before maturely choosing a song they liked and adorably doing the hand motions. My kids, who had not been there before, either ran around the room like a crazy person (Isaac) or screamed and cried like I was tearing out their toenails one at a time (Carrie). Carrie did pay enough attention, however, to fall in love with the “fishy” song and how it ended with “bubbles… bubbles… bubbles… SPLASH!” I think it may have been the only thing she truly enjoyed about the experience.

After circle time, it was time for snacks, which prompted another ruckus from Carrie because hand washing. Isaac washed his hands once, went to the back of the line and washed his hands again, went to the back of the line and washed his hands again… while Carrie had to be forced to touch the water (she’s not like that at home at all… she’s kind of my little fish) and continued to sob hysterically when she couldn’t grab a bowl of peaches all by herself. 

It felt like I was upending this poor teacher’s entire day by having these two unruly kids. Everyone has a first day in group, I know, and all kids have bad days, but they were out of my control entirely. If I had one calmed down or under control, the other was off in the corner summoning Baphomet from the ninth circle of hell or something. 

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But at least the snack was okay. The other parents sat nicely with their kids who’d been there before, all of them using utensils in some approximation of correctness. My twins have little experience with utensils, since finger foods are just easier when you’ve got two, but Carrie gave it the old college try and ate her peaches in about three seconds flat. Isaac had no interest in peaches and instead dumped the bowl over with glee. They both selected pretzels and goldfish as part of their snack, and they would have done well, except they were next given open cups of water to practice with. 

Like. Okay. I know that I need to get them started on that. I know it’s something I should’ve been doing for a while. They’re almost two. Bottles should be ancient history.

But I remain tired and maybe I don’t want to deal with wet milky clothes every day all the time. 

Carrie gave it a try again, and she got thoroughly soaked, though she got some water in her mouth. Isaac grabbed the cup by the lip, and while I know I should have repositioned his hand and let him try again, all I could think of was how I was about to have two drowned rat children and it was 19 degrees outside.

So I took the cup away.

Undeterred, Isaac took Carrie’s cup and sat there merrily squishing every goldfish and pretzel he could find into it until the teacher finally came and took snacktime away, replacing it with craft time: black construction paper and chalk. 

Isaac ate the chalk, but it’s nontoxic, so whatever.

Carrie actually did a very good job, scribbling and stabbing and giggling all the while, which is probably why her next despair-a-thon started when it was time to give the chalk back in exchange for bubbles. 

I like bubbles time. Everyone likes bubbles time. All of the children calmed down and started laughing and chasing the bubbles. Blowing bubbles is a soothing breathing technique, and I felt some of my stress dissipate. Carrie even managed to blow a bubble of her own and squealed with pure joy when I caught it on the wand for her. 

And then it was time to move on. Free play, circle time, snack, craft, bubbles, and now gross motor play in the gym area two rooms down. The twins aren’t very good at being escorted places while holding hands because… well, a lot of reasons. With Sam, we had one child, so we took him out everywhere by himself, and we could hold his hands, and he got good at it. I took him out alone a lot. When Kat lived with us, she came with me. Taking Sam out was easy at most ages, and it still is; he’s a delight to have at any store, behaving himself quite well in exchange for a trip down the Lego aisle.

But the twins… I’ve been afraid. For good reason. I have two hands, exactly two, and any outing with two children requires more than two hands. You need at least one hand, probably two, for each child. You need hands for the stroller and hands for the diaper bag and hands for the inevitable “NO DON’T TOUCH THAT… oh, sorry, I’ll pay for it, sorry!” Being that I only have two hands, I don’t take the twins out by myself very much yet. I need to, I need to start doing it because how else will they learn? But…

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But. That’s basically the moral of this whole story. Everything is twice as hard with twins, which is why I haven’t been doing any of it, which is why they came to the parent-child group as a hot mess.

Somehow, I wrangled them down the hall and let them free. It was… something. Isaac is bad at following commands and ignored everyone who told him that slides are for sliding, not climbing, but later found a rocking horse and pure joy. Carrie just… up and slapped everyone she met. Hauled off and just, SMACK! Right in the face. I thought I saw it once or twice, turning around from helping Isaac to stop climbing up the slide, buddy, what did I say? but I only really caught it once, as I was bringing Isaac back from something else. I turned around, Carrie was facing this other little boy, and she just smacked him right across the mouth, twice, before heading off to do her own thing. 

“Carrie!” I admonished her, hurrying to find some way to scold her without dropping Isaac. The little boy seemed mostly unfazed, though he did lean against his mother sadly, and I was so embarrassed that I couldn’t bring myself to fess up and apologize. 

And then the twins got stamps on their hands and the group was over. I wrangled them back up the stairs, and right when I thought we were going to be okay, Carrie broke away from me, running past the receptionist’s desk and into a meeting room filled with heavy and dangerous office supplies. I had Isaac on one hip, the diaper bag on the other, my purse slung around my neck, and zero energy. “Carrie!” I cried again, and the receptionist looked concerned while doing nothing. 

I put Isaac down. He dissolved into sobs because I was clearly leaving him to be eaten by wolves. I put the diaper bag down. I put my purse down. I marched into the office after my little escape artist, who giggled merrily until I picked her up and then began screaming. I scooped up the diaper bag. I scooped up the purse. I scooped up the sobbing Isaac. I got us all out to the van, somehow, and got everyone buckled in, somehow, and I sat in my front seat and sobbed. 

It was just so much.

Group is a challenge for me from the start, because group means interacting with strangers, which is not something I do well. It means an unfamiliar environment. It means too much noise. It means new situations and strange schedules, and it means that I’m already parenting on hard mode just by being there. 

But add twins. 

Two little adorable kids, one of whom can’t talk at all yet, the other of whom is an impish diva gremlin child. They’re freaked out because it’s a weird place. They’re freaked out because it’s a weird schedule. They’re freaked out because there’s so much noise and so many people and everything happens so much. 

And congratulations to me, I think I just did parenting on hard mode tournament level. 

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I congratulate myself mostly because they came out in one piece, nobody got seriously hurt, and against every sense of self-preservation I have, we’re going back on Thursday (after missing last week because Isaac had a merciful 100 degree temperature, the exact cut off for “you can’t come to group today”). But man oh man do I feel like I’m shitting the bed on this parenting thing. I need to push them and teach them new things, but group made me realize just how behind I’ve been and just how ill-equipped we are for that sort of thing. Worse, it made me feel utterly incapable of doing… well, anything that involves them. How am I supposed to manage twin two-year-olds on a day-to-day basis if I can’t even keep them from wreaking total havoc in a group environment?

I remind myself that my mom will be there this time (hopefully), and that once Isaac’s ABA therapy starts, his therapist will be there. That it’s neither a race nor a competition. That they’re happy, healthy, and perfectly fine children, technically around where they’re supposed to be. 

But I also can’t help but look at it as a test where I didn’t exactly fail, but I won’t be getting a lot of praise, either. 

It also caused my bronchitis to relapse, and now I’ve got a nebulizer, so that’s fun.

I don’t know. I shouldn’t be in my feelings about this, I shouldn’t still be kicking myself about the whole situation, but I am. I feel like I’m failing them on some level that they’re nearly two and don’t have these basic things going on–the ability to transition from one activity to another without falling apart, the ability to drink out of a cup without a lid, the ability to not slap the living daylights out of other children who happen to exist. They’ve not had a lot of opportunities to practice those things, and I know that’s largely my fault, and it’s something I need to work on going forward, but I feel shitty that I haven’t… I don’t know, I guess been doing more to this point.

I don’t know. I don’t know. Two year old twins are a lot.

Right This Very Minute

There’s a weird thing that happens to me after Christmas, as I look at January on my calendars and realize that I have no plans whatsoever. I don’t need to figure out baking specifics and schedule supply runs for specific pay days. I don’t need to make sure the kids have specific outfits at specific times. I don’t need to do much at all in January, and even this year, when I’m looking at a whole bunch of specialist appointments for me and for Isaac (geneticist for Isaac, geneticist and endocrinologist for me), the first couple of months are so calm and nice.

I mean. That won’t last. And it’s mostly just January because the twins turn two in March and then there’s vacations and Easter and Sam’s birthday and basically from March until July 4, I’m going to be screaming like a velociraptor…

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…BUT FOR NOW, everything is copacetic!

Christmas was honestly pretty nice and lowkey, despite everything I ended up putting into it (lots of baking, lots of stuff for the kids, lots of everything), and that tends to be the case year after year, and I won’t complain about it. I was utterly spoiled this year, with SO MANY KITCHEN THINGS, ranging from a food processor (I can make pie crust now!) to a gloriously sweary oven mitt…

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…and then, of course, Kyle added a winter coat and a lovely necklace to the mix, so all-in-all, I feel quite loved and appreciated.

Kyle does as well, but that’s more in spite of me than because of me because GOSH but I hecked up his Christmas.

See. Okay.

The initial plan was to get him a nice, new camcorder because he’s always been about video production and editing. He has a degree in it, even! And although we had a camcorder, it was old and didn’t seem to work well, so we never used it and mostly just depended on our phones to commemorate special occasions in 60-second snippets. And that’s fine, but I kept thinking about how nice it was when I was a kid to have longer videos of our family life and how much fun Kyle has when he’s editing videos.

So I ordered the best reviewed camcorder on Amazon, at least in our price range, and did so after talking to him about it, as I have a personal policy on not buying big gadgets for people until after I’ve cleared it with them. Kyle was excited about it, the camera came with all sorts of accessories, and once it arrived, he set to work putting it together and trying it out…

…and found out that it does not, apparently, work with his computer or mine.

We’re not really sure why. It didn’t manage to record ANY video, despite us taking plenty, and connecting it to both of our computers just got a lot of “?????” from all devices. On the plus side, we discovered that our old camera works really well and has a TON of pictures from Sammy’s first birthday stored on it, so we do have a camera in the end. On the minus side, I still have to go and return the damned thing because what the hell even.

And ALSO on the minus side, because I figured the camera would be such a hit (and it would have been if it hadn’t sucked), I kind of got lazy about Kyle’s other Christmas presents. I got him a couch slipcover, with the mindset of “now we can put off getting a new couch for longer without stressing about our couch being disgusting!” because finances or something? I don’t know. I genuinely don’t know what I was thinking, and anyway, it doesn’t matter because the damned thing doesn’t even fit on our couch. It’s big enough, oh yes, but it’s designed for a specific shape of couch and that shape is not our shape.

So I’m 0 for 2, but I didn’t fail entirely. I also got Kyle a beard kit that includes a sheet to keep beard hair from falling in the sink and some beard shaper tools and combs and such, and he liked that a lot. And he liked the things I got him from the twins. 

Just. You know. Not from me. Womp womp. 

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The kids also had great Christmasses, and their gifts have been overall hits. Sam benefited from Minecraft only being $6.99 to put on his Kindle, so even though we’d stuck to our self-imposed limits of four presents from Santa and four from the family (from each of us: Kyle, me, Isaac, and Carrie), we added that to the list, and it’s basically made his life. And it’s been great because even though he’s in love with the game, he’s still been really good about sticking to his screen time limits without getting angry or complaining, so I’m pleased as punch there.

Isaac has been the hardest to shop for because his interests are a bit more complex than “Sam likes MInecraft” or “Carrie likes Elsa.” He likes figuring out the mechanics of various objects–how they work, how to turn them on or off, how to make them do what he wants–and he likes climbing on things. Eventually, once we’ve got off our asses and cleaned up the backyard some, he’ll have plenty of places to climb around, so we mostly focused on puzzles and mechanical toys, which have all been hits to varying degrees. He mostly just seems happy that he’s got a week with both me and Kyle home to play with him, because he’s too sweet for words.

And Carrie, sweet Carrie, has discovered (though not to her disadvantage!) that having narrow and specific interests makes Christmas very easy for people. She received a grand total of three different plush Elsas, all of which she adores (though only one of which is she allowed to bring to bed every night) along with a periwinkle blue “Elsa” cloak that she asks for by adorably saying, “coke! coke!” at us. She is also confused by Kyle having this week off, but is mostly happy about it… though also sometimes prone to tantrums about it if she realizes that, despite there being two parents home, neither is currently paying her All Of The Attention.

So overall: good times. I’m excited right now about having the Christmas-to-New-Year’s Fugue Week to eat all the candy we got for the holiday, return the camcorder and slipcover, and basically just exist without any conscious understanding of the passage of time; and then I’m excited about having January be a much slower month than the last ~3-4 have been in terms of Stuff To Do, because this year is going to be absolutely wild once it picks up steam. 

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But in the meantime, it’s time to breathe.

Isaac

When I was pregnant with the twins, I had this nagging fear about Isaac, that I’d have a hard time bonding with him. I was excited to welcome Carrie into the world, not just because she was my child but because she was the girl I’d dreamed of having for a very long time. And it’s not to say that I wasn’t excited about Isaac–he was a surprise blessing, the second baby on the ultrasound where we expected to see nothing–but most of my excitement about him came about in an “and” sense. 

It terrified me. I didn’t want any of my children to feel like an “and” and I still don’t. I didn’t want Isaac to be that middle child that faded into the background beside his big brother and little sister. I wanted him to know that he was powerfully, wildly loved, even if I couldn’t conjure up the emotions supporting that fact when I was the size of a small whale. And I was terrified, utterly terrified, that I’d never bond with him the way I bonded with Sam, the way I expected to bond with Carrie. I wasn’t jumping out of my skin with excitement about having another boy, and I was afraid that would translate to my bond with Isaac taking more time to arrive.

Spoiler alert: SUPER didn’t happen. The instant they brought him close to me in the operating room, I fell in love in a way I never have before. I love all of my children equally, of course, and I fell in love with each of them in different ways. With Isaac’s, it was like all the bonding that I hadn’t been feeling over the 34 weeks of my pregnancy hit me in one sucker punch of adoration. I cried when I heard his cry for the first time, and then when I actually saw him, I cried again because of how much I suddenly loved him. 

I have a special bond with all three of my kids. Sam is my partner in crime. Carrie is my little princess. But Isaac is kind of my person, and he has been since the day he was born. When he was really little and the twins used to nap in the mornings while Sam watched TV and I dozed on the couch, Isaac would wake up fussily about 45 minutes in and not relax until he was resting against my chest. I know it’s not safe to sleep with your kid like that, but we did, me with my arm gently around him and him listening to my heartbeat. 

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Something about the way he viewed and interacted with the world clicked with me, the way it didn’t quite click with Sam or Carrie. Not to put too much stock into what’s a glorified Quizilla quiz, but Sam and Carrie are huge extroverts with a desperate need to be seen. Sam’s favorite words are, “Hey mom, look at this!” and Carrie has taken to putting both of her hands on my cheeks so that I can’t look away from her while she babbles in her little baby tongue (probably about Elsa or Darth Vader; she’s quite articulate). I love them. I love singing and dancing with Carrie. I love Sam’s neverending rambles about Minecraft.

Isaac is on my wavelength, though.

Isaac’s way of showing he loves you is first to give you things, and they don’t always make sense. A couple of days ago, he saw his speech therapist for the first time in well over a month (because vacations and holidays make schedules weird), and he was so excited to see her that he brought over a pair of pants (Carrie’s) and one of his blocks; when she put those down, he rushed away to find something new that she might like (his brother’s stuffed puppy and an old cracker). 

He’ll look at you until he’s used to you, and then he’ll ignore you completely… for the most part. When he’s acknowledged and understood the people in a given space, he’ll mostly make his own noises–lots of loud “AAH!!” or just random babbling–while figuring out the mechanics of things or building his own stepladder to something he’s not supposed to reach (read: having a Christmas tree has been fun). You can call his name until you’re blue in the face, but unless interacting with you is his idea, he’ll ignore you completely (again: fun times with the Christmas tree). He’s so insanely clever with figuring things out; he can turn things on and off again with buttons that are completely hidden from him and supposed to be so. He experiments with how things move and work, and his absolute adoration of lightswitches is both adorable and aggravating in the same breath.

If he does want to play with you, you do not get a choice in the matter. If you ignore him when he comes over to you, he yells in your face until you pay attention. He climbs into your lap like the little mountain goat that he is. If he wants you to move your hands in a certain way, he adjusts your fingers, your wrists, deftly puts everything where it ought to be with gentle movements, and then moves himself into place to play whatever game you’re playing (today, it was “got yer nose!” and he pushed my thumb between my middle and forefinger then smashed his head against my hand several times to make sure I understood what he wanted). 

But when he loves you, oh, when he loves you. He climbs up on you and hugs you, his right arm tight around your neck, his cheek resting against your right shoulder. And he stays there, content, holding onto you. He does this in the morning and he does this at night, and he does it if something upsets him. He’s moved away from giving kisses (except to his sister, because they both think it’s hilarious that someone small like them exists in the house), but when he’s tired, he snuggles, his head nestled against your left shoulder, his body relaxing against you, releasing all the tension it usually holds. He doesn’t say your name (except when you’re not around to hear it), but when he sees you, his entire face lights up like a sunrise. He doesn’t scream for joy like Carrie or start telling you Every Little Thing like Sam, but you catch sight of that smile and you’re in love.

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Isaac, my sweet, lovey boy, has autism.

We’ve suspected for a long time, even longer than you’re supposed to suspect (they won’t do tests until your child is eighteen months old); something about him just pinged something in me. Today, we had an evaluation done to learn if our suspicions–and those of our EI specialists–were correct, and they were. He’s autistic, neurodiverse, his symptoms only setting him apart from a neurotypical child of his age a very little bit. The skills that would pull him out of even that diagnosis are inconsistent, at best, and so he is autistic, and so he qualifies for interventions. 

I’ve been trying to parse my feelings on this since we left the doctor’s office around 2 this afternoon, because they’re hard to parse. On the way in, I was crying and hoping that if he had any neurodiversity, they’d see it so that he wouldn’t grow up thinking that he was bad at being a person but instead knowing that his brain just works in a different way. For a heartbeat in the office, I was terrified that they’d adopt a “watchful waiting” approach, which is the conservative way of doing things for a child so young like Isaac (who, although he’s technically 21 months old, actually falls into the category of being about 19 months old because yay, prematurity). But they didn’t. He is autistic.

The trouble I’ve had since is that (a) the next steps are daunting, to say the least (please, please, please let this be something our EI services coordinator can help us with), and (b) I hate the way therapy and services get discussed. 

For (a) they gave me an enormous packet of information that I didn’t have a chance to read through until I got home because the evaluation was in the middle of Isaac’s naptime. Kyle got to it before I did, as I was sitting there and hugging my exhausted child, and he kept asking me what certain paragraphs and sentences meant and what we could do with them and if I’d have to be driving all over the Commonwealth to get Isaac to all these therapists, and I honestly had no idea how to answer him. There were so many recommendations and ideas, and it was all so overwhelming. 

It’s Christmas the day after tomorrow, and I’m not going to try and dive into everything right now because even if I did try, nothing is open. I don’t know if anything will be open until after the first of the year, which is unhelpful, but at the same time, it kind of grants some breathing room before everything changes again.

I know a lot of it will probably be groups and small classrooms, which is something I’ve been wanting for Isaac (and Carrie) for a while, but is also something we couldn’t afford to do privately. With this recommendation, I hope they’ll get that chance for socialization that I can’t provide them; it did Sam so much good when he was their age, and I’d not be surprised if it sweeps away those last bits of prematurity clinging to them. 

I know a lot of it will be ABA, which terrifies me on a lot of levels because I don’t know what it entails, and a lot of the autistic adults I’ve read stuff from and spoken with have given ABA harsh criticism. Our insurance won’t cover therapies like Floortime or RBI because they don’t have the bodies of research devoted to them that ABA does, and we just can’t afford to pay out of pocket. And it’s like… I’ll take the ABA, but only as long as Isaac’s therapists have the same goals I have, those being not to erase or cover up his autism but to help him find ways to communicate his wants and needs to a world built for neurotypicals. I don’t care if he’s flapping his hands or spinning or stimming in a way that makes people stare, as long as he’s not hurting anyone.

Which brings me to (b) because all of the therapy and services seem geared towards “curing” or “reversing” his autism, and I’m just like… that’s not? how it works? I don’t want to cure or reverse anything about him. He is my baby. He is a piece of my heart. I do want him to be able to communicate with us for his own sake, whether that means we all learn ASL or he has a tablet where he points to pictures or he actually expresses things verbally. I want him to be happy, and I want him to be able to take care of himself, however he can, once Kyle and I aren’t able to do so anymore. 

Like the way they were talking about therapy just really turned me off… they were saying that because he’s so young, ABA could give us a complete reversal of symptoms and he wouldn’t be autistic anymore. And I just… don’t want him to be not autistic anymore. I don’t want to train that out of him like he’s a puppy with bad behavior. I want him to be able to talk to us, I want him to be able to focus his attention and take care of himself and cope with sensory overload (or underload, he seems to be something of a sensory seeker), but I don’t want him to stop lining up blocks and balls or taking apart toys to make them work differently or spinning or flapping his hands when he gets excited. That’s part of who he is. I don’t want that to go away. 

GOD I hope the ABA people are open to me saying all of this. I’m not trying to get him therapy in order to remove autism from the equation. I’m getting him therapy to help my autistic son cope with a world that doesn’t understand how his brain works so that maybe, when he’s 36 years old assuming the world doesn’t burn to a crisp by then, he won’t have spent a lot of his life enumerating things that are wrong with him (weird, unprofessional, antisocial, too quirky, off), but will instead be able to say that he’s a delight who just happens to be autistic. That he’ll be able to plan for that when searching for work or meeting people or socializing so that he can live the absolute best life he can.

So that’s where I am, emotionally. He’s autistic, and I don’t feel at all sad about that. If anything, I feel a little happy, which a lot of people would probably find weird, but he really is my person. I get the way his brain works. I appreciate it. But I’m scared of therapy, and I’m angry about the language used, as if it’s trying to delete who he is because it doesn’t fit into a neurotypical mold. I don’t care if he flaps his hands or spins or lines things up in a row or is obsessed with trains. I just want him to be able to say, “I’m hungry” to people who aren’t me (I can 100% tell when he’s hungry without him using words) and then be able to step away if the world is too much for him. I want him to know who he is, and that he’s incredible, even if he doesn’t fit into a neurotypical mold. 

And I’m afraid that, as we move forward with therapy, I’ll have to choose between helping him communicate and have a sense of self and having him forced into a mold that doesn’t fit him. 

All about the boys…

I have a whole blog entry in my brain about the holidays, but I’m not going to write that now because there’s going to be too much to talk about as we go forward, like Thanksgiving and Sam’s Christmas program and the Christmas party at Kyle’s office and Isaac’s autism evaluation (more on that in a second), and I just want to take a deep breath before plunging into things, SO.

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We had Sam’s first ever parent-teacher conference about two weeks ago, not because of anything bad but because the teachers at his school like to make sure everyone is on the same page when it comes to kids’ progress. Sam had a half day that day, and he got to hang out at home while Kyle and I made ourselves look moderately presentable and headed to the elementary school for the conference.

It was weird, from my perspective, to be going in for it because, of course, I’ve never been on this side of things. I’ve never been a teacher, either, but usually, I’d be the student stuck at home or someone roped into doing check-ins or what-have-you while parents milled about. And, really, the only parent-teacher conferences I remember at all happened when I was in high school; and even then, I only remember the reports about two of my classes (pre-calculus, which I was failing miserably–my dad said of my teacher that he looked like was stoned out of his brains, and in retrospect, that makes me a lot more forgiving of said teacher; and art, where my art teacher got really excited because of the way I’d stored some of my work).

But it was still weird because, I suppose, I didn’t have anything to worry about. Sam’s a smart kid, and it’s kindergarten. We haven’t gotten any notes or calls from his teacher about his behavior or progress, so I knew going in that he probably didn’t have any red flags flying that would make me want to wear a cone of parenting shame. Instead, Kyle and I ambled through the empty corridors of the school, admiring the artwork on display for our benefit (including Sam’s book of writing exercises). I felt very grown-up doing so.

(shown: Sam’s self portrait and Halloween story from his writing exercise book; the Halloween story explains in the corner that rather than describing Darth Vader to the teacher, he just made Darth Vader noises)

And then we met with Sam’s teacher, who is pretty awesome. I think teachers nowadays often tend towards awesomeness, especially in higher-funded schools (we live in a tiny town with a pretty high average income, which leads to at least decent funding for the schools), but I still like to sing the praises of awesome teachers because honestly, they could get praised from morning to night and it still wouldn’t be enough. They take on our kids every day, twenty of them at a time, and somehow manage to keep them from burning the building down AND ensure that they learn something. Teachers are superhumans. 

And Sam’s teacher is a superhuman.

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And thankfully, we were all on the same page about Sam. On the plus side, she gushed about his engineering mind, talking about how he’d built a billboard of the numbers 7, 8, and 9 out of Legos (Kyle and I were highly impressed but not surprised; this is the kid who saw a picture of a camera on the side of a Lego box and built it just from looking at the picture) and how he’s excellent at any sort of kinetic learning, which… again, no surprises here. If this kid is allowed to move and build and do things with his hands while he works, he’ll be at a college reading level by the time he’s seven, I’d bet anything. 

On the flipside, he’s not an overachiever in all areas because nobody is. His teacher seemed concerned about three particular things, one of which made us giggle and another of which made us nod in agreement. 

The uninteresting bit was that Sam is struggling with rhyming. That seems like a weird thing to struggle  with, I thought, but once I worked with him on it a little bit, I started to see the issue. Sammy is, as it turns out, a sight reader now–he knows words by sight, not necessarily by phonics, and he knows that certain combinations of letters make certain sounds but not necessarily how to replicate those sounds. He rhymes pretty well when he’s not looking at words written on a page–he comes up with rhymes to really weird words that I wouldn’t even think of–but when words are written down, he has a hard time because he’s trying to see which words look alike without thinking about which words sound alike. 

So he’s in an RTI (response to intervention? I think?) group, which is basically remedial rhyming, and son, that is nothing to be ashamed of. I’m here, your 36-year-old mother, having needed a year’s worth of remedial gym. Like who in the world needs remedial gym

(actually, now that I’m thinking back on it, it was probably more than a year of remedial gym, since I remember doing it in second grade, too)

giphy-1(shown: why I had to do remedial gym)

On the giggly side of things, Sam apparently makes sound effects whenever he does anything. I think we’ve managed to tune this out at home, but it’s to a point where he’ll make spaceship noises as he’s bringing a marker over to color something or be like, “Here comes the T! T-t-t-t-t-t-t…”which… yeah, when his teacher gave us that example, Kyle and I basically fell out of our seats laughing because oh my god. That is the most hilarious and adorable thing  ever, ever. I am storing this up in my brain archive and on this blog so that it can become a story that we tell about him when he’s much older, as our parents tell stories about us (like the time I asked my dad to kill a piece of dust that looked like a spider or the time Kyle tearfully spewed the Where’s Waldo beefaroni he’d long begged for all over the house). It’s a treasure. I love it.

And on the “we knew that” side of things, Sam’s teacher let us know that he struggles with what she calls “flexible thinking,” which means that he’s very, very stubborn. And… yeah. He really, really is. This kid hates change, and has hated change since he was big enough to know that things were different from how they’d previously been. We always brace ourselves at the beginning and end of school years because change always prompts restless nights and stress in him, often ending in tears. We talk him through it, we give him social stories to help him cope, we help him with countdowns, but in the end, he always ends up struggling. 

It’s one thing I don’t know how to help him with. I’m stubborn myself (cue Kyle looking over my shoulder as I write this saying, “YA THINK?”) and it’s not something I’ve either managed to stomp out in myself… nor really tried to stomp out, because when applied correctly, stubbornness is a really powerful thing. Digging your heels in, saying, “no, you move,” all that… it’s good stuff. But you need to find a balance and recognize that some change is good, that sometimes, different is positive. 

BUT that’s also something that you can tell and model for kids until you’re blue in the face and they’ll still not get it because that’s what being stubborn is. This way of thinking and behaving is safe, so I’ll stick with it, because I don’t know what will happen if I don’t. 

Yeah, I get it, son. And I’ll always be here to tell you that it’ll be okay if you try something new or do something different. It’s hard right now; you’ve had a wild past two years (which is nearly half your life so far) that’s been full of changes, and every one seems scarier than the last. And soon enough, you’ll have the life experience to realize that change isn’t always bad and that you’ll almost always be okay on the other end… and those times when you’re not okay, you’ve got people who love you supporting you and taking care of you. 

But for now, your dad and your teachers and I will all be very, very patient with you as you learn flexible thinking. 

And then on Isaac’s side of things, we’ve got an appointment for his autism evaluation!

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This is a pretty exciting thing–waiting lists for autism evaluation can be upwards of a year and a half long, but because we worked with Early Intervention and they administered a series of tests beforehand to narrow down his issues, they were able to get in touch with the local medical group that does screenings, and that group contacted us almost immediately to set up an appointment. What’s more, the appointment is before the end of the year–December 23, to be exact. 

I’m really relieved about it on so many levels, and at the same time terrified, more of what comes after diagnosis than of the diagnosis itself. I want him to get a diagnosis because that means that we can target his therapy so that he’ll be able to understand us and express himself, and hopefully also be able to cope with a very crazy, very noisy world around him. I’m not looking to tone down any symptoms he’s expressing–rocking, spinning, stimming in other ways–because I literally don’t care about that at all. It’s what you need to deal with life in the noisy 21st century. What I care about is making sure that he’s not getting frustrated because he doesn’t understand and can’t be understood. I’ve been there. It sucks. 

But that’s what scares me about therapy. I’ve heard a lot of horror stories about various autism therapies, and don’t get me started on my absolute loathing for Autism Speaks. Isaac’s services coordinator didn’t help with that when she was leaving the other day after helping me make a new services plan for Carrie (who, the little imp, was demonstrating all of the skills she refused to demonstrate during her most recent evaluation, sigh). She mentioned that Isaac would be screeching a lot once he started autism therapy, and while I get that on a lot of levels (because it’s hard to go from “mommy just get me what I want, you know what I want, even if I’m not saying it” to “oh, I have to use words”), I’m still afraid. 

I don’t want anything that’s going to try and “cure” him or try and suppress things about him. He is who he is, and he’s perfect. And I don’t want to suppress his symptoms or hide who he is, either. I just want him to be able to communicate. 

Sigh. I know I’ll be able to talk about this with his therapists, but it still just nags at me. And I should probably find a therapist myself to help me work through everything about… well, everything.

After the holidays. I’ll look into getting a new therapist after the holidays. Right now, I’m just going to swan dive into the crazy and paddle like hell until I get to the other side. Until next time…

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