How to Manage a 5-Year-Old Autistic Child’s Needs and Keep Your Sanity
It’s 4:17 on a Tuesday, I’m in the cereal aisle at Kroger, and my 5-year-old daughter Lila is on the linoleum screaming. The problem? The box of Honey Nut Cheerios I grabbed has a T-Rex on the front, and last week’s box had a triceratops. She won’t touch the T-Rex one. I can feel the eyes of other shoppers on the back of my neck, my jaw tightens, and for half a second I feel that old familiar panic rise up—guilt that I messed up, embarrassment that I’m “that mom” with the out-of-control kid.
A year ago, I would have left my full cart by the shelf, dragged Lila out to the car crying, and spent the drive home beating myself up for not anticipating the change, for not being patient enough, for ruining another errand. Today, I just knelt down, pulled the crumpled photo of our living room couch out of my jeans pocket, held it up so she could see it, and put the T-Rex Cheerios back. I got her hand, walked out to the car, and grabbed a half-gallon of milk from the stand by the exit on the way. No guilt, no bolting, no crying in the parking lot—well, not for me, anyway.
Lila was diagnosed with autism just after her third birthday, and in the two years since, I’ve gotten more advice than I can count. Most of it is useless. “Just be patient.” “Give her space.” “Connect with her world.” None of it tells you what to do when you haven’t had a full night’s sleep in a week, when your kid can’t handle the playground 10 minutes from your house, when you just want to get groceries and go home without a meltdown. I’ve learned a lot the hard way, about meeting her needs without losing myself in the process.
The first thing I changed was ditching the idea that we have to push through every plan to make her “ready” for the world. I used to force us to go to birthday parties at bounce houses, to stay at the playground even after Lila started covering her ears and rocking from the noise of other kids, because I thought exposing her to more stress would help her adjust. All it did was leave her inconsolable for hours and me drained for the rest of the week. Now I have a hard rule: if 10 minutes have passed and everyone is still distressed, we leave. No apologies, no excuses. I’ll text the birthday mom later to say we can’t do the crowded party, but we’d love to drop off the gift and meet for ice cream another day when it’s just us. Most people are fine with it. The ones who aren’t don’t need to take up space in my life anyway.
I also stopped buying the lie that caring for my own sanity has to be a big production. I used to read all these articles that said I needed a weekend away, an hour at the gym, a spa day to recharge. That’s impossible for most of us. I can’t afford a babysitter for a whole weekend, and Lila won’t stay with just anyone anyway. Now I take what I can get. When Lila settles into lining up her wooden blocks along the baseboard, her favorite quiet activity that takes 20 to 30 minutes, I don’t use that time to fold laundry or answer emails. I sit on the other end of the couch, pour a can of cold lemonade I already stashed in the fridge, and turn on a silly home renovation show I don’t have to pay attention to. No productivity allowed. That 20 minutes a day adds up more than any spa day I’ve ever had.
I also keep three small things with me everywhere I go, no exceptions. A chewy tube for when her mouth needs extra input, a mini jar of non-sticky blue slime for her to squeeze, and that crumpled photo of our couch. When she’s overwhelmed, she can’t process words, so telling her “we’ll be home soon” doesn’t help. Holding up a photo of what we’re going back to gives her a concrete reference that calms her down faster than anything else I’ve tried. It takes up barely any space in my bag, and it’s stopped more meltdowns than I can count.
That doesn’t mean I never snap. Two weeks ago, I was running late for her speech therapy appointment, and Lila insisted on wearing her fuzzy rain boots even though it was 75 degrees out. The elastic on her sneakers hurts her ankles, she says, and the rain boots feel right. I was in a hurry, so I raised my voice and told her we couldn’t wear rain boots in warm weather. She immediately sat down and started crying, and I felt that familiar knot in my stomach. Now I know that repairing is easier than pretending I didn’t mess up. I sat down next to her, said “Mommy was in a hurry and yelled, that was my mistake. I know the rain boots feel good, you can wear them.” We were 5 minutes late to therapy, but we both got there calm, instead of frayed.
Some days are still terrible. Last week I spent two hours cleaning glitter off every surface of the living room after Lila dumped her entire craft kit because I turned off Bluey two minutes early. When I finished, I sat on the floor and ate an entire bag of chocolate chips straight from the pantry. I still lie awake some nights worrying about kindergarten next fall, about whether the teacher will understand her needs, about whether other kids will be kind, about whether I’m doing enough. I don’t have it all figured out. We still have meltdowns in grocery stores, I still forget to restock the slime sometimes, we still skip plans last minute when Lila is too overstimulated to leave the house.
But these small, boring changes work more often than not. Lila gets to have her needs met, most days. I get to keep my sanity, most days. That’s enough, for now.
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