A Day in the Life of an Autism Parent

Written by Jim Walter on April 24, 2017
Autism Parenting

Most of the time, my schedule seems manageable. But as a single dad to two daughters, one of whom is on the autism spectrum, there are times when it seems… whelming to overwhelming, depending upon the day.

This particular day is Saturday — normally, a day for relaxation and blowing off steam after a long week at work. But as any mom or dad knows, you don’t get weekends off from parenting!

The early morning

12:01 a.m.

I put my head down on the pillow. It’s the weekend, so I’m not super worried about how late it is. I can treat myself. What’s the worst thing that can happen?

2:00 a.m.

I hear my daughter, Lily, stirring. Did I really think I could just go to bed at midnight like a normal person and not pay for it? I get up and settle Lily back down in her bed. If she seems droopy-eyed, I’ll try to let her settle herself back in. If she’s wide awake, I’ll lie down with her.

2:30 a.m.

She’s asleep. Time to go back to bed. Hopefully she’ll sleep in a little. (Narrator voice: “She would not sleep in a little.”)

5:30 a.m.

She’s up. Sometimes, I can let her chatter to herself, but if she gets too restless, she’ll get into mischief. Either way, I won’t be able to sleep through it.

5:45 a.m.

After getting her on the potty, we go downstairs. I brew coffee (because no sleep). She watches TV. “The Wiggles.” Always “The Wiggles.”

6:30 a.m.

I make her a Pop-Tart. She’s already asking for bacon. Weekends are for bacon. Always. I cut the Pop-Tart into 16 individual rectangles, roughly equal. Any bigger, and she will mash them in her hands. It’s pretty messy. These are bite size. Finger food for… not-so-gentle fingers.

6:32 a.m.

She’s done and asking for the bacon. After bacon is yogurt. After yogurt is fruit. After fruit is crackers. This is a routine. There are consequences for failure to adhere to said routine.

The actual morning

7:35 a.m.

I start my grocery list. Lily and I go grocery shopping with military precision. We have to get out of the store no earlier than 11:00 a.m., because that’s when McDonald’s starts serving lunch, and no later than 12:00 p.m., which is when I need to start heading home to pick up my oldest daughter Emma.

In order to do all that, I have to leave the house by around 9:30 a.m.

9:00 a.m.

Put on actual pants. Time to get Lily on the potty again, out of jammies, and into shopping clothes.

9:30 a.m.

The list is finished. Shoes on. I start Emma’s breakfast, then wake her up so she can start getting ready while we shop. Depart for the grocery store. Getting Lily into the car isn’t hard, but she doesn’t like that transition. Even with timers, it’s too abrupt. Too difficult to go from happily watching her beloved Wiggles to driving in the car. Glasses are flung across the room.

9:30–9:45 a.m.

We drive in silence. Lily likes music. When I play music, though, she typically reacts angrily. Fresh from fighting to get her in the car, I try to keep the peace and avoid making waves. Sometimes, I offer music. Sometimes, I simply play it to see whether she will tolerate it. Most of the time it’s easier just to drive in silence.

10:00–11:15 a.m.

We grocery shop. Lily is great at the store. It’s routine. She is getting too big to fit in the race car, but sitting in the cart allows me to take her with me and not have to hold her hand, guiding/leading/dragging her through the store. It’s a nice outing for us until we get to the checkout. Lines are the worst, and waiting is a struggle. If there are lines, there can be problems.

Lunchtime!

11:30–11:40 a.m.

The payoff: McDonald’s. By this time, Lily has typically asked me over two dozen times when we’re going to McDonald’s. We wait in line. Two dozen more times I will answer, “We’re here baby, just a couple more minutes.”

11:45 a.m.

We have nuggets. I am driving while cooling the nuggets on the AC and splitting each in half. It’s not ideal, but if I give her the nuggets directly, she will (a) eat them too fast and choke on them, or (b) spill half of them on the floor. This way works.

12:01 p.m.

We’re home. We have 19 minutes before I have to drive Emma to the dance studio. I get Lily on the potty and we watch “The Wiggles” until it’s time to go. Each transition is a fight.

12:20 p.m.

Lily struggles with this trip to the studio. She doesn’t want to go to dance class — we just got home. Sometimes I just leave her glasses off for this trip because each time she flings them, it seems like I’m increasing the odds of them breaking. She kicks off her right shoe while we drive.

12:40 p.m.

After dropping off Emma, we get back home. In 30 minutes, we’ll have to go pick her up again. It won’t be pretty. Too many transitions too quickly. If I could shop faster, I could drop Emma off at dance, shop, then pick her up after McDonald’s, but then Lily wouldn’t eat until 12:40 p.m., which is its own problem, since she gets irritable when she’s hungry.

1:10 p.m.

We leave: shoe off, glasses off, music off. Lily isn’t pleased. She’s tired. That doesn’t help.

1:30 p.m.

Lily is asleep on the couch. Keeping her up would make her miserable, but I’m never sure whether letting her sleep means she’ll wake up at 2 a.m. I opt for the calm. While Lily sleeps, I can get the laundry started, do dishes from last night, clean up breakfast, or… rest. Sometimes, I fall asleep contemplating what to do next.

3:00 p.m.

I can’t let Lily sleep longer than this. I need her to be able to get to bed at a reasonable hour. Five or so minutes later, a bleary-eyed Lily is sitting up. I drag her reluctantly to the bathroom.

3:30 p.m.

During the week, this is about the time that Lily would be getting home. She gets hungry early. But then again, she eats lunch early. She starts perseverating about dinner around this time. We watch TV or go outside and swing a little bit, or she plays on her iPad. Apart from the constant requests to eat, it’s more or less peaceful.

The evening

4:30 p.m.

This is about the time when I cave in and make Lily dinner. I actually make two dinners — one for her and one for Emma and me. Lily is a picky eater, but she has her favorites and they’re all relatively easy to make, so making two meals isn’t as painful as it might seem. I was one of those parents who swore that my kids would eat whatever the adults ate or they’d eat nothing at all. Autism counters that parenting philosophy with rejoinders like, “Oh… then I will eat nothing at all. Forever.”

6:00 p.m.

Second dinner is ready. When Emma isn’t with friends or at school or dance, she watches Lily so I can focus on chores and cooking. We eat while Lily watches TV in the background.

7:00 p.m.

Dishes and cleanup. Lily isn’t a particularly tidy eater, and crumbs have a way of accumulating. Some days, I don’t have the strength to keep up with it, but I do try at least once a day to do an “end of the day” sweep.

7:30 p.m.

Bath time for Lily. She loves her bath. Some kids with autism have strong sensory aversion to having their hair scrubbed, or even the water. Lily is somewhat hyposensitive, so it doesn’t bother her at all. I let her pick what color the bath should be. “Blue Anthony,” she tells me (a reference to “The Wiggles”), and I toss a blue pellet in the water.

8:00 p.m.

Hair drying is a bit more dicey. There are lots of transitions: getting her out of the bath, drying her, getting her jammies on. Getting her into the bed and into position to dry hair. She’s often pretty irritated with me by the time we’re done transitioning out of baths and into rooms and out of rooms and into other rooms that she is tough to wrangle into position. It doesn’t help that she’s pretty sleepy by this point.

8:30 p.m.

She’s out like a light. I know I need to get her into her bed, but I let her lie against my chest for a while and stroke her soft hair. She smells like bath soap and her hair is like silk and we lie like that until I sigh heavily and nudge her up. “Nooooo, I wanna sleep in daddy’s bed,” she whines. We argue about that as I take her to the bathroom for tooth brushing and one last potty break.

8:40 p.m.

She’s in bed and I’m lying next to her. I hold her hand. Or rather, she circles my finger with her fist. She fidgets if she doesn’t hold my finger. Holding it seems to soothe her. She’ll fall asleep in 5 to 10 minutes. Many autistic kids struggle getting to sleep or staying asleep. Lily falls asleep easily most nights. I lie with her and enjoy the silence and her peaceful breathing.

9:00 p.m.

I wake up. When I fall asleep with Lily, I wake up groggy and useless. This is my “me” time. I try to get on the treadmill some nights. Read. Write. Binge-watch the Netflix series du jour. But sometimes, I just feel like catching up on sleep. When Emma is home, I typically try to spend time with her. So much of our day revolves around Lily’s choices (or things that won’t upset her), so it’s important to make sure I spend some quality time with Emma.

11:30 p.m.

Time to get ready for bed. I kiss Emma goodnight and brush my teeth, take my allergy meds, and climb into bed. I check emails, maybe play a game on my phone. I put my head on the pillow. It’s late… but what’s the worst thing that could happen?

Jim Walter is the author of Just a Lil Blog, where he chronicles his adventures as a single dad of two daughters, one of whom has autism. You can follow him on Twitter at @blogginglily

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