Life isn’t perfect for anyone, and everyone’s ‘normal’ is different. But we all put on a certain face to the public, while our real selves live more exclusively at home.
Imagine going to bed, snuggling in, kids in bed, getting all cozy, and just dozing off when your bedroom door slams open, with a kid standing in the doorway announcing that he can’t sleep.
Now imagine ushering that child back into bed again, settling back into your own bed, and hearing a series of bangs, scrapes, sighs, and giggles from the room next to yours.
You sigh, throw off your covers, make your way back to his room, and try to talk him through some kind of zen-breathing-mental-imagery exercises in an attempt to coax him to sleep sometime before midnight rolls around.
You close the door, tuck in, yet again, and not 20 minutes later, the door slams open again. Now imagine that happening all night, every night.
This is my normal.
I have four sons, three of whom have been diagnosed with varying forms of autism. There is a certain mystery that seems to surround the term ‘autism’, and I frequently hear people tell me things such as ‘but your kids seem fine to me,’ or ‘but they’re so smart.’ The autism that the media has most often represented is that of the non-verbal child or adult who dislikes any touch, does not communicate with others, and is a savant of sorts. The other autism we’ve become familiar with through the media is characterized by the likes of Forrest Gump or Sheldon Cooper of The Big Bang Theory. Eclectic individuals, to be sure, but largely self-sufficient, and capable of behaving in a manner acceptable enough to be integrated into society without much more than a hint of the typical teasing and jokes.
I’m here to tell you a different story. I’m here to tell you a little about the side of autism that my friends, family, and the general public may not see.
About eighty percent of kids with Autism Spectrum Disorders (ASD) have sleep difficulties, which include difficulty falling asleep, frequent night awakenings, prolonged night awakenings, and early morning waking. Two of my children struggle with sleep, both of them having great difficulty getting to sleep at night, and both of them rising early. One of them also wakes frequently during the night, and has prolonged wakeful periods during the night. Children such as my own who struggle with sleep issues may display daytime sleepiness, learning difficulties, and behavioral problems including aggression when they haven’t had the adequate amount of z’s the night before.
While medication can help children with ASD who have comorbid disorders such as Attention Deficit Hyperactivity Disorder (ADHD) and there are also medications to help children with serious behavioral issues, medication is not a cure-all. Over the years, I’ve tried it all. Melatonin. Slow-release melatonin. High-dose, slow-release melatonin. Warm milk before bed, sleepytime tea before bed (neither a good idea for kids who are also delayed in potty-training). Gravol. Soothing music. No matter what I try, the result is the same. In the end, they’re popping in and out of my room until around midnight or 1pm, and then, just when they’ve finally fallen asleep, around 3am the wakings begin.
One of my little guys sneaks into my room or his brother’s room looking for his iPad, a flashlight, or a book. Other times he sneaks to the basement or living room and turns on the tv. So punish him, they say. Take away privileges, they say. They don’t get it. The more I try to provide a stable set of rules and consequences, set schedules, and spend quality time with them, the more push-back I get from my one little night owl. Before you start suggesting token systems, charts, rewards, and the like, know that I’ve done it all, I’m consistent, and he’s well aware of the rules. He just doesn’t care. He just can’t sleep, and he’s bored.
This is a hiccup in my life, but it’s his childhood. If it means I have to stay up half the night to make sure he stays in his room, doesn’t raid my freezer and eat all of the 5-gallon tub of chocolate ice cream, and hopefully catch a wink or two, then that’s what I’ll do.
Problem is, it really sucks. A social worker once told me to put an alarm on his door that would go off if he left his bedroom. I wondered if she’d ever lived in a house where an alarm would wake up an entire house of restless sleepers, and then tried to settle them all back down again. I wondered if she’d considered the fact that the poor kid would, inevitably, need to pee, and that in order to avoid the startling sound of the alarm at oh-dark-thirty upon attempting to leave his room to use the loo, he may develop the habit of just using his garbage can to relieve himself. (I didn’t make that one up – it’s already been done).
I know the night time routine around my neighborhood like the back of my hand. I can tell you that the resident skunk loves to visit our backyard somewhere between 0130 and 0230, and I’ve learned never to let the dogs out no matter how much they whine between those hours because they know he’s there and want to give chase. I can tell you that at around 0230, there are some confused birds around here that feel it’s just the right time to start chirping cheerfully, and that around 0400, they stop. The elderly lady across the road stays up until around 0300 playing the flute or watching tv with the volume cranked up a little too loud. Around 0400, the trucks back their way into the local grocery store/hardware store docking bays nearby, beeping all the way. I can tell you that there’s a lady with a German Shepherd who walks him behind our house at around 0530, and that he loves to bark at squirrels and chase them, eliciting hollering and shouting from his owner. I can also tell you when there’s been a fire call in our town, because the fire chief and another firefighter live on my street, and I hear their trucks peel out of their driveways, motors growling, and see their lights flashing off down the road.
So, like Eleanor Rigby, I wear the face that I keep in the jar by the door, exhibit as much patience as I can muster with my kids (I’d give myself a solid ninety percent most days) and I try to stay organized. I slap on lipstick most days to pretend to look put together for my kids and anyone else I may stumble into. But please forgive me when I forget your birthday, haven’t called in over a week, forgot to ask you how you’re feeling when we talk, or look like I haven’t done anything with my hair except braid it in the last year. I’m running on little sleep, broken sleep, and sometimes no sleep. I’ve seen more sunrises than any non-shift worker I know, and missed more morning workouts than a sloth because to hell with my morning run when I finally get to sleep at 0600 and the alarm is set for 0630. If I’m late sending you a baby gift, a thank you card, or forgot what day of the week it is, please forgive me. I can’t be everything to everyone right now, but if playing sandman to my sleepless little men means that they will have a better day, learn more, and (hopefully) eventually learn that there’s nothing to do at night but sleep, I have to accept that.