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.