Posted on November 01 2018
Ding dong. What do you SAAAAAAAAY??
Ding dong. He’s nonverbal. He’s autistic.
Ding dong. He can’t talk. He won’t say it.
Ding dong. Sorry, he just wants to come in your house, he doesn’t understand why everyone keeps closing the door.
Sometimes holidays aren’t really holidays for parents with special needs children. Children with autism. Twins with autism like me.
There, I said it. The costume, the excitement, the “trick or treat” just doesn’t happen. Every year on Halloween I find myself in the same funk, not wanting to go, half-assing costumes since we probably won’t go. But I’ll pull myself together and do the block, grimacing each time I have to explain my kids’ behavior. Every year, like clock-work, I have an emotional breakdown on Halloween.
We don’t do birthday parties. For years my family and friends just tell each other I’m weird or anti-social, but the alternative is meltdowns, puking, blow-outs, over-stimulation, hand-flapping that will knock over your fondant, Pinterest-perfect birthday cake, escaping your backyard BBQ into a densely wooded area or the nearest train tracks, banging on your newly Windex-ed interior French doors and interrupting your adult conversation, gagging on your prized, three-generation-passed-down Pierogies, and just generalized “un-disciplined behavior” that embarrasses you and your constituents.
My son would rather put foam alphabet letters into his blue bucket for hours on end or remove his diaper and paint with his own shit, than play with a truck, read a book, or watch the latest Pixar movie. Most nights he wakes up at 3:30 am inconsolable and we have to put compression vest on him to calm him down, sometimes put him in the shower until he stops screaming. Some nights all four kids wake up from this and it repeats every night. Every. Single. Night. Each day I wake up not knowing how I’ll have the strength to get through without crying. Most days I don’t.
The endless loop of Ding Dong: “he has autism” took me over the edge last night. I ate about 19 snickers bars, went into the garage, laid on the floor, and sobbed for a few hours until my husband dragged me out screaming. If you ask me why, I couldn’t tell you. But at that moment I wanted to be on the garage floor, lying next to the dog, alone, dirty, and completely dissociated from my actual house.
Well-meaning family tells us to get a hearing test. Because then, like magic, his autism will be cured by some explicable cause. So they can say, “Aaaaah so that’s what it was” and move forward chewing their meat and browsing CNN on Facebook.
They want an explanation to assuage their general curiosity. Like solving a murder because not knowing is just too much to comprehend. Not having a reason to explain the autism away is inconceivable.
Speaking of murder, others remind us it could be worse, he could be dead. Thanks, Carol, I hadn’t thought of that.
But the truth is part of “him” is dead – the part that I had extrapolated in my mind, the part where I ask him about school and he rolls his eyes and gives me a mono-syllabic answer, the part where he tells me what he wants to do for his birthday party, or what he wants for Christmas. The part where he makes friends and possibly even has a first kiss. The part where he tells me he loves me, just once. The part where he says he hates me because I ground him. The part where he cuts out valentines for his classmates with an actual scissors and signs his name. The part where he doesn’t clean his room and I nag him for it and he goes back and makes his bed. The part where he and his brothers look at stolen Playboys. The part where he gets high-fived on the baseball field.
Something else people won’t say: you don’t get invited. Your friends, the well-meaning ones, and the family, even and especially the ones who love you a lot, just don’t have the energy or bandwidth to be actively in a relationship when you have baggage. 80 lbs x 2 of baggage, to be exact. The scarlet A of autism means you don’t have mom friends, you don’t do play dates, you don’t pop over for coffee or lunch, you don’t volunteer at your other kids’ schools, you don’t do. You just don’t. You don’t. Some friends try really, really hard to be understanding but they simply can’t fit you into their play schedule on a regular basis. It’s just too much. Friends via text, long-distance friends, online friends – that’s cool. But no real-life messiness.
Your other kids fall behind. They aren’t getting one-on-one reading time before bedtime, tutors, painting time, special time with Mommy. Hell, half the time, they are barely getting a fully balanced meal because mommy is in full-fledged, Jumanji-level survival mode. They’re certainly not on the honor roll, they definitely don’t remember to bring in an orange shirt for Halloween celebrations, and chances are, their shirt is on inside out or backwards, or both.
Chances are, Mom just wants a minute to put her own shirt on the right way. A minute to cry. A moment to have someone look into her mascara-smeared, caffeine-twitching, un-blinking, trying not-to cry eyes, and say, you’re going to make it until tomorrow. I promise you. You will.
Ding dong. He has autism. Ding dong. The witch is dead.
So next time a kid doesn’t say Trick or Treat, give him the fucking candy.