11/22/2016 05:39 EST | Updated 03/29/2017 12:27 EDT

Autism Plus Insomnia Equals A Cry For Compassion

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Parents having trouble sleeping.

Autism or not, I know there are parents everywhere who have kids who don't sleep well. You can tell which families have got'em. They're the ones with the heavy bags under the eyes, the shirts that are on inside-out, the permanent coffee cup glued in their palm. They snap too much at their kids, they choose tv over playing at the park and they generally look like hell. I sympathize. I've got 'em.

We should have known from their birth that this was going to be a lifelong battle. I remember after the twins were born, listening to other new moms brag how their kids were sleeping through the night at three months old and secretly hating them. I remember trying all the same things I had done with my first and wondering why it wasn't working with O and W. 1 to 3 hours of sleep for their first 18 months would destroy the strongest of men but somehow we survived it.

I thought that those newborn days were long over. I was wrong. Now I don't have a newborn whose mewlings cries may have been an irritant at 3am, but it doesn't compare to the anxiety you experience when your bedroom door gets slammed open at 3am, all of your lights get turned on, your taps are running full, your other 2 kids are crying because they were awoken the same way. You follow the trail of lit lights downstairs to find a bag of bread torn open with its slices all over the floor and your water cooler depleted of half of its contents.

Oh! Is that your sleeve of newly developed photos floating in that 6 x 6 ft giant puddle on the floor? The Wiggles are blaring full blast from the tv, your back door is wide open - freezing air blowing in and where is the culprit?? He's got one foot on the front steps after having figured out how to unlock the front door. Middle of winter. It means cold. And if I hadn't woken when I did, W would probably be on his way to take a dip in the freezing river.. his runaway destination.

There are periods that can last a couple of months where I think "I'm so lucky that my kids don't have sleeping issues". When the world is right. When we get 7 to 8 hours a night and the kids hop into bed happily by 8 o'clock and sleep right through. How could I have forgotten that those times can quickly disappear and turn into this?

But then I'm in Week 3 of W's insomnia. Sometimes it shows its ugly head at bedtime. Hour after hour of listening to him kick the wall and vocally stimming his "oo-oo's and ee-ee's" all night long that can suddenly turn into screaming or crying. Seeing his light flick from underneath the door. You can't help but laugh when you hear him knock on the door from the inside.

The worst of it is, you can't check on him. If you do, he knows that you'll come back again and again. So you try to stay out. But if you don't check, you're running the risk of finding a mess or an injury from an episode of hyperactive gymnastics.


But the worst is definitely the wake-ups in the middle of the night. You think you've escaped it. After a long day, the kids have been in bed since 7 or 8pm because they couldn't keep their eyes open and you crawl under the covers around midnight. 1 o'clock and BAM! The lights go on and so goes the rest of your sleep. It's not a situation where you can cuddle with him in bed until he falls back into la-la land. He is up. It's like his brain thinks it's daytime. You can guarantee that you'll be up with him at least until 4 and maybe you can catch a few more hours before the rest of the house has to get up.

Just like the newborn era.. my ex and I would argue every single night about whose turn it was to stay up with W. It's a miserable time. Being a reader, I wouldn't mind the extra time to sit up with a book if I knew I didn't have to chase W. But you can't sit still with that boy because he destroys everything. He won't sit still and he won't stay in one room for longer than 5 minutes.

Last night was the worst. And the reason for this bitch session. I was alone with the twins and W took a leap off the coffee table and knocked his hip off the wood. The upset from his hurt turned into a full eruption of a tantrum that lasted an entire hour. After figuring out that a really, really deep pressure hug was doing the trick to subside his sobbing, W finally got a hold of himself again. He disappeared in a flash and I assumed he was off for some time to himself.

By this point, O had huge alligator tears rolling because he could see his dinner sitting on the counter, but couldn't understand why it wasn't in his mouth. I decided to leave W be and feed O. It's always a trade-off. Could W be doing damage while I'm sitting here with O? So after dinner, I went up to check on W. Couldn't find him anywhere then finally realized that the pile of bedding on his bed was the wee man sound asleep. I wish I had taken a picture. He was so peaceful. This never happens.

Now here presented the real problem. It was only 5 o'clock. I decided to let him sleep. I thought that I could handle a 3 or 4 o'clock wake up if that was going to be our fate. So J went to bed, O went to bed. I cleaned up and thought I would get myself to bed as well so that I could get some precious hours in before the wake-up when BAM! 9 o'clock and guess who's up?

I realize this story is way too long and kind of boring, but here is why it's an important story to tell. Life with autism isn't sexy and it's not glamorous. It's cleaning poop out of heating vents, it's cleaning up minor floods, it's coaxing kids off of the top of the wall unit and it's staying up with them all night long while the rest of the world sleeps. Nights in our home can be hell.

So when you have a child on the Spectrum who is nodding off in your classroom, whose lack of focus is distracting the other kids from paying attention to your lesson -- or if you see one of us zombie parents who forgets words and even their own name, or who miss appointments and forget to return phone calls. Please consider that they might be living this life and might just deserve a pass. Just try to remember the newborn phase and then you'll get it.

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