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 🙂 

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