The 3 AM Wall: When the “Village” Feels Very Small

They say it takes a village to raise a child, but at 1:00 AM, when the house is silent except for the sound of your child’s tears, the village can feel a thousand miles away.

Last night was one of those nights. I am currently writing this exhausted down to my very bones, fueled by Dr. Pepper and that strange, shaky adrenaline that comes from only three hours of sleep.

Insomnia: The Battle We Can’t Win

Our son, L, is 16 now. He lives with a complex combination of autism, an intellectual disability, and Disruptive Mood Dysregulation Disorder (DMDD). But the one that really drives us to our wit’s end—the one that feels like we’re always losing against? Insomnia.

I always say we could deal with almost anything except that. The lack of sleep makes everything else so much harder. You start to wonder: Will we always be navigating sleep issues with autism?

This isn’t a new battle for us; this story goes back to when L was only two years old. Back then, we were those parents. You know the ones. The “I’ll never medicate my kid” parents. Looking back, I realize how judgmental we were. You just don’t really know what you’re willing to do until life hands you a child whose brain doesn’t work like anyone else’s. To all those judgy parents out there: you just don’t know.

Our Survival Mode

In those early years, my husband and I lived like ships passing in the night. He would stay up with L until 6:00 AM, and then I would take the morning shift to watch over him, since L can never be left unsupervised. This would cycle until L would finally crash, usually around 32 hours after his last wake-up. We did everything the pediatrician told us: melatonin, calming strategies, weighted blankets. Nothing worked.

Eventually, we reached a breaking point where medication wasn’t just an option—it was a necessity for our survival. Today, L is medicated to help his brain find rest, which gives us the chance to rest, too. But as last night proved, even medication has its limits.

The Longest Night

Due to his intellectual disability, L doesn’t understand danger. If he doesn’t sleep, we don’t sleep.

Last night, L lay awake, screaming and crying about having to go to school, long after his medication should have kicked in. Because he is semi-verbal, he doesn’t have the words to tell me exactly why. All I knew was that his brain wouldn’t quiet long enough for him to get there. As the clock inched closer to midnight, I knew we were in trouble. I lay there with him, rubbing his back and whispering encouragements until 1:00 AM, when my husband took over so I could catch a few hours before my 4:00 AM alarm.

As a teacher, I then have to go into a classroom and give my all to other people’s children while my heart (and my head) is still back home with L. I don’t have the words to express how hard that was today.

Why I’m Sharing This

I’m sharing this because “defeated” is a heavy word, but it’s the only one that fit this morning. When you’ve fought a battle for 14 years and you still find yourself staring at the ceiling in the middle of the night, it’s easy to feel like you’re failing—to feel like it will always be like this.

But if you’re reading this from your own dark living room at 2:00 AM, I want you to know that you are not alone. The exhaustion that you feel—I have felt it too, and it’s okay to say, “This is hard.”

Defeat is a feeling, not a permanent state. We felt defeated last night, but we got up this morning and moved on. We are still standing, living, and hoping to make a difference for others.

A Village for the Sleepless

I created this Village so that we don’t have to carry the weight of these sleepless nights in total silence anymore. To every parent out there rubbing a back, counting down the minutes until dawn, or headed to work on a few hours’ worth of sleep: I see you. I am you.

With Love, 

Helen 

Our Autism Village Founder

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