Parenting a Child With Autism During a Pandemic
It’s a blessing and a curse.
I think I hate Legos.
They’re a brilliant toy. In an era where cars were pushed on boys and dolls pushed on girls, Lego made it universal for all. They’re pricey as fuck, but there’s nothing like them. I think they’ve gone too far with making pieces overly specific to sets which stifles creativity, but that’s a rant for another time.
Mix Legos with autism and it’s a whole other creature.
My son is 10. Developmentally-delayed with a chromosome disorder (inherited from me, because I’m the mother who gives all the gifts), we’ve treated him for autism since he was a little over a year old. He can barely color within the lines and his sensory issues are off the charts.
With Legos, my son is a pro.
It’s true when they say autistic kids can hyperfocus on things. They’re also rule-followers. That’s the perfect blend when building complicated Lego sets. While other kids were fucking around with Duplo, Ashton was building massive and intricate building sets.
Unfortunately, kids with autism melt down easily at little things. If he puts a piece in the wrong spot and doesn’t realize it until a few steps later, his reaction is akin to cutting off his arm. Ashton receives all the therapy types (behavioral, occupational, physical, and speech), but he still struggles every day. It doesn’t matter how many times I tell him that Lego is the one toy you can always rebuild and that I can fix anything, he still melts down.
Right now, I’m Zooming (is that a thing? Can I use Zoom as a verb now?) into a funeral. That’s where we’re at today in this social distancing world. He was a family friend, while I’m not shedding any tears I do have fond memories and want to pay my respects. Logging in while laying in bed, unshowered, and in my PJs is the least I can do. Down the hall, I realize Ashton has been wailing for a while.
Most kids would ask for help but Ashton freezes up when facing a problem. I put down the laptop, go into his room and he’s melting down over a Harry Potter Lego set. It’s 3 massive, overpriced sets that connect together. He couldn’t connect one building into another. I go over and without assessing the situation enough, I pop the Harry Potter Whomping Willow set into the Harry Potter Grand Hall. Except that made a Whomping Willow piece fall out.
Ashton’s meltdowns start again. I connect a piece and the whole thing goes to hell in a handbasket when a handful of other pieces break off. I ask him who gave him the sets (needing to be delicate with my blame), he says the middle set is from Santa and the big one is from my quasi-ex-husband. Dammit. I can’t say, “well Santa should have figured out that this set is for display purposes and not something that should sit on the carpet expecting to be moved around a lot.”
He jumps on his bed and is wailing at the top of his lungs. He rants about how it’ll never get fixed, what’s the point in having it, he’s just going to give it away, and a bunch of other panicked thoughts.
It’s like fifty pieces of Lego rest on four 1x1 pieces in this set. Who’s the asshole Engineer who invented this?
I’m frustrated because I’m in the middle of the funeral. Lacking patience, I tell Ashton that he needs to stop melting down and anything in Lego can be fixed. Cue his next ranting meltdown that I want him to smash all his Legos so that he can be more creative. “No, I said we should build new things with all the pieces you have in bins” I reply. Then he wails that without the sets, all he can do is build a single wall (we have more Lego than the average kid). Chicken Little always has a comeback.
Realizing I’m making the set worse and needing to get back to the Zoom funeral, I tell Ashton to wait until his dad can help him. As far as I’m concerned, that’s on him for getting a crazy fragile Lego set to an autistic kid who will melt down when a piece falls off.
With Ashton wailing more The Sky is Falling rants about this Harry Potter set (“I’m never building Lego again!”), I return to the funeral. I’ve never attended a Muslim funeral before. I’ve also never seen a casket get lowered into the ground. My parents used to tell me that in Islam, money isn’t wasted on fancy caskets. They weren’t kidding. It’s a plain white box, lowered by some guys with moving straps in what I can only describe looks like a construction site from the camera’s vantage point.
Most days, Ashton’s meltdowns elicit some form of compassion. Occasionally, we make the mistake of losing our shit because we forget he has issues and it’s simply ludicrous for a ten-year-old to melt down like he’s three. Today, I’m emotional that we’ve been trapped in a house without any outlets for anyone. I stifle my tears while staring at the funeral online.
My quasi-ex-husband is done with his meetings and I can hear him going down the same negotiating path I went down. First, trying to calm Ashton down. Then trying to fix it. Then offering to help rebuild it. Joseph loses his patience and yells at him, “Okay, now I’m going to start getting mad. You’re acting stupid.” (I understand him getting mad, not okay with the word “stupid” in this context.) “You’re purposely getting yourself amped up so that you can cry. I’m just going to get rid of all your Legos because I’m tired of you melting down each time they break.” Ashton wails about how he’s too lazy to rebuild it and that he’s a big crybaby who cries over everything.
I holler from my bedroom, still watching the funeral, “You don’t need to build it. No one is making you.” More discussion from my quasi-ex-husband trying to calm him down. Ashton starts screaming at the top of his lungs how he never wants Legos ever again and other things I can barely understand.
I have no conclusion; the meltdown is still happening as I type this while Joseph tries convincing him to play with something else.
Imagine this scene, multiple times a day, for almost ten years. Add in social distancing and staying at home. (Ashton just yelled, “I’m never, ever, ever watching Harry Potter ever again!”)
Fuck, life needs to get better soon.
It’s not all melodrama. In between, staying home is ideal for someone with autism. Ashton hates people and loves predictability. He hates outdoor activities and doesn’t that mind we can’t go anywhere. There are no sensory issues with school clothes while at home and we don’t have to worry that he won’t eat his lunch because food is a struggle with him.
Unlike my daughter, who wants constant attention, my son can watch the same Godzilla movies over and over by himself if we need him occupied. Why Godzilla? It’s an extension of dinosaurs, which he became overly obsessed with after his car phase (autistic children love things that spin, like ceiling fans and car tires). I was so relieved when he switched to dinosaurs. But he perseverates, which means he just loops the same idea over and over. Six years and he can still prattle on the differences between a T-Rex and a Spinosaurus. Because he likes predictability, he doesn’t mind repeating the same movies or toys.
Unfortunately, staying at home hasn’t given either of my kids any growth opportunities. I can’t easily take Ashton out of his comfort zone like I could in the past. Before the pandemic, at least his daily routines involved getting out of the house and seeing different people. Getting him to walk to the mailbox with me is an ordeal now.
Yesterday was the presidential inauguration. A new vaccine plan was rolled out. There is hope on the horizon.
To anyone out there trapped at home, trying to raise special needs kids in an unprecedented time: I raise a glass to you. Especially those whose children have more severe delays or you’re doing this completely on your own.
This is the home stretch. Hang in there.
