What is Sleep?

Good morning, Dear Reader—or good afternoon…or whenever you happen to be reading this—why don’t you pull up a seat and join me for my fourth cup of coffee.

‘Four cups?’ You say. ‘Isn’t that a bit excessive?’

My cardiologist would probably agree with you. And maybe you’re both right. But, excessive or not, it’s also necessary. I’m pretty sure coffee is the only thing keeping me upright at relatively functional these days.

You see, both of my children are allergic to sleep.

Alright, that’s probably not a “real thing”, but that’s the conclusion I’ve come to after seven plus years of sleepless nights. It’s really the only explanation at this point. Because it’s either that or they both enjoy seeing me suffer, and I don’t think they’re quite that cruel.

My son, Dean—now seven—has struggled with sleep from day one. I realize that infants aren’t supposed to sleep through the night. But I was informed that they were, in fact, supposed to sleep. At some point.

Okay, this may be a tiny bit of an exaggeration. But just a tiny bit. Obviously, he does sleep at some point. He hasn’t made it seven years without sleeping at all, now that would be impressive—if it wasn’t also a truly terrifying notion. He does sleep. Eventually. The problem is he only sleeps once it becomes an absolute necessity.

Dean lives his life at a frantic pace, unable to be still for more than twenty or thirty seconds at a time. He is constantly in motion. I have no idea how he does it. I get tired just watching him. And he somehow manages to continue operating at this pace until he, quite literally, drops wherever he is.

I have a whole photo album’s worth of pictures of this kid sleeping in the most random places and positions over the years. At the bottom of the stairs, halfway off the couch, sitting at his desk at school, sitting up at a restaurant with a grilled cheese hanging half-way out of his mouth, still chewing in his sleep.

I kid you not, there have been numerous times we caught him sleep eating because he fell asleep at the table but even his subconscious wasn’t quite finished with whatever tasty thing he was consuming. Nothing comes between Dean and his favorite foods.

On the rare occasion he does sleep, thankfully he sleeps hard. You could probably have a full-on rave in his room and he would just keep snoozing away—he’s a lot like his grandmother that way. This has been both a blessing and a curse. It’s nice to be able to go about my day without worrying about waking him, but as he gets older—and bigger—it has become increasingly difficult to move him to a more comfortable place without at least a little assistance on his part. I can tell you from experience that trying to life a 65 pound, 49-inch-tall seven-year-old up into a loft bed is an ordeal that will inevitably lead to one of two conclusions: I’m either about to throw my back out, or he’s fine sleeping right where he is.

It never lasts long, though. A few hours for his body to re-charge enough to turn back on and he’s back on the move. And the cycle begins again. Typically beginning with a hunt for snacks.

This sleep pattern has been hard on all of us over the years.

Hard on his dad and I for obvious reasons. It’s difficult to function as a grown adult on the best of days. Functioning as a grown adult on four hours of sleep or less for the umpteenth day in a row is damn near impossible. That’s when I default into survival mode. I operate at the bare minimum level of effort required to get my family through the day with everyone alive and no worse for wear. And if we happen to have cereal for dinner, so be it.

The lack of sleep is also hard on Dean. No matter how much energy he seems to have, bodies weren’t meant to run on such little sleep. It’s obvious when the sleep deprivation is starting to get to him. Physically, his movements become awkward and he clearly struggles with spacial awareness and balance—more so than usual. He’s been known to run into everything from door frames to furniture to other people.

The sleepless nights get to him in other ways too. Even on his best days, Dean struggles to use mouth words, but he compensates in other ways to get his needs met. When he’s tired—well and truly tired—his communication breaks down even further. Frustrations run high on both sides as we try, and often fail, to discern what it is he needs. These frustrations often hit a peak and, understandably, become a meltdown on his end and a shutdown on mine.

It’s these moments when communication totally fails us that truly break my heart. To see my child trying so desperately to communicate something and being unable to understand what it is never fails to make me feel like the worst mom in history. Shouldn’t I just know on some instinctual level what it is he needs? Shouldn’t I just know?

After muddling through these sleepless cycles for several years, we broached the subject with his pediatrician, who also expressed concern. She told us it isn’t uncommon for neurodivergent people—particularly those with autism and ADHD—to struggle with sleep patterns, but that especially as a child, the amount of sleep Dean was getting on a regular basis was not enough.

Not wanting to jump to any conclusions, she referred us to a sleep study center to get him checked out and make sure there wasn’t anything else going on. Several months later, the evaluation results showed that Dean had mild obstructive sleep apnea. We tried several medications to alleviate the problem with no success. Eventually, in the summer of 2021, he had his tonsils out.

While we were assured that his solved the obstructive apnea issue, Dean’s sleep still hadn’t improved much. And, as he transitioned into full time school once he entered kindergarten, the repercussions of his lack of sleep were even more obvious.

It wasn’t a decision we took lightly, but after a thorough discussion with his doctor, we decided to try medication to help him sleep. We tried melatonin in the past to little success. Another thing his pediatrician said wasn’t uncommon for neurodivergent folks. Instead, she prescribed him Clonidine—a blood pressure medication that is often used to treat sleep issues.

Despite my ever-present exhaustion, I was still wary of trying medication at first. I felt like a failure as a mother. I could hear it now, the accusations. ‘You drug your child! What kind of parent are you?’. These hateful words swam around in my brain for months, even after making the decision to go ahead with the medication. Some days I still hear them, even years later.

Thankfully, those words are most often drowned out by the happy laughter of my son. By no means is the medication a miracle cure. Even with the Clonidine, in order for Dean to fall asleep, on any given night it takes: a sound machine, a projector, a second projector, his TV on, his fan on, his tablet, his bubble tube, his weighted blanket, and an act of god. Traveling with this kid takes a lot of planning.

Sleeping a full night still isn’t Dean’s natural rhythm, and that’s okay! He is now sleeping eight to nine-hour nights one or two days a week. Most other nights he’ll manage to clock in at least five or six hours, which is still an improvement.

Of course, this means he is normally up for the day sometime between twelve and three in the morning, which puts stress on my own sleep pattern. While he is largely self-sufficient now when awake at night, he still gets one of us up—usually me—to fix something on his tablet or to get him a drink or a snack. It’s not uncommon to be up with him four or five times a night on average.

So, yes, he still sleeps less than the average neurotypical peer, the improvement those extra hours have had on his life is indisputable. Even if he only manages five hours of sleep, he is in much better control of his body, his communication, and his emotions than he was prior to medicating. The way he lights up when he is understood remains one of my favorite sights in the world.

Once in a while, though, we’ll have one of those mythical nights I thought only existed in fairy tales and on the internet. The Full Nighter. Dean will pass out—at a reasonable hour and everything—and sleep straight through until sun up. Sometimes he will manage ten or even twelve hours in one go! These nights are few and far between, and I’ve learned to appreciate them when I can. However, there is one thing that ruins these magical nights for me.

Child Number Two.

I don’t know if it’s random happenstance or if they plan it, but on any given night, if one child manages to sleep through the night, the other inevitably wakes up to make up for it. It’s like they’re a tiny gang, united in their mission to disrupt their parent’s sleeping habits.

With my three-year-old, Maddie, it’s anxiety that throws a wrench in the whole sleep thing. Not only can she not fall asleep unless her and or I are lying next to her, but if she wakes at all during the night, she can’t fall back asleep unless we’re there. We’ve tried asking her what the matter is, but I’m unsure if she can’t articulate it yet, or if she isn’t even truly aware herself, or both.

Many nights have been spent on the floor of her bedroom, curled up with one of her spare blankets. This went on for almost a year before we finally took a cue from our perpetual backaches and upgraded her bed to one with a pull-out trundle for us to camp out on. Not nearly as comfortable as our own mattress, but a vast improvement over the floor.

Somehow, my husband, who—after eight years in the Army—has more backaches and body aches than your average thirty something, has no problem plopping himself down on the pull-out and quickly passing back out. I, however, am not so lucky. As I make the frequent middle of the night trek upstairs to my daughters’ room with her koala bearing off of me, I may get just the tiniest bit jealous. I’ve always been a light sleeper and my daughter tends to toss and turn amid a chorus of breathy snores. This, when coupled with her white noise machine, conspire to make sleeping in her room a challenge I have yet to truly conquer.

Why doesn’t my husband just get up with her every time if he has no problem sleeping up there? I’m glad you asked. Because Maddie has this adorable thing where if she sees me, she will only accept me taking her back to bed. Don’t get me wrong, it feels good to be so loved…but, some nights I kind of wish she loved me a little less. Especially on the days where she spent all of her waking hours insisting ‘No! Want DADDY!’. Funny how that tune changes once the sun goes down.

My husband, absolute rock star that he is, will often brave the imminent meltdown and take her back to bed in order to let me get some actual sleep. I swear, the man is a saint. Of course, once she calms down, she is never sorry to have her daddy close by. For all of her blustering, she loves him just as much.

Another thing she loves, though? Talking.

While most nights, she settles back into bed with little fanfare, there are some nights where she wakes simply bursting with thoughts she absolutely must share immediately. Never mind that it’s one-thirty in the morning. They simply cannot wait until daylight hours. I know. I’ve asked.

This is how I often find myself in the wee hours of the morning answering questions such as ‘Can I have marshmallows for breakfast?’, ‘Where is Blippi?’, and ‘Why are you tired?’.

So, as I finish the last few sips of my fourth cup of coffee, and contemplate a fifth, I raise a mug in solidarity to all the other sleep-deprived parents out there, mainlining caffeine to survive, despite their cardiologists’ best efforts.

I salute you.