The Least of Our Worries: How Parenting a Child with Complex Needs Rewrites the Rulebook on Concerns

If you’re a parent, you’ve probably found yourself googling, “Why won’t my child sleep?” at least once (or let’s be real - several hundred times). Sleep struggles rank high on the list of universal parenting stressors. But when you’re raising a child with complex needs, that list doesn’t just shuffle around - it completely rewrites itself.

Take my son, Elias, for example. He doesn’t just resist sleep; he turns bedtime into an impromptu concert. Vocal stimming (or, as I like to call it, “3 am karaoke”) is his jam. When he’s winding down - or waking up absurdly early - he doesn’t just murmur or babble. He sings. Loudly. At the top of his lungs. And while I love his voice (truly, I do), after a long, stressful day, the sheer volume can be… let’s say, “challenging.” I’ve even resorted to sleeping with earplugs.

But here’s the thing: I don’t actually worry about it. Not anymore.

Because once upon a time, we weren’t sure if we’d ever hear Elias’s voice at all. After heart surgery, he had a paralysed vocal cord, and there was a real fear that his little coos and giggles - his potential future words - might never come. And so, when I find myself this close to asking the universe for a little bedtime peace and quiet, I remind myself: his voice is a gift.

Reordering the Worry List

Parents of children with additional needs develop a unique skill: worry triage. Some concerns that keep other parents awake at night barely register for us. Meanwhile, things that might not even cross another parent’s mind are at the top of ours.

For example:

“Is he hitting his milestones on time?” - That’s the least of our worries. We celebrate progress on his timeline.

“Is he a picky eater?” - That’s the least of our worries. If he’s eating at all, we’re thrilled.

“Should I be worried about screen time?” - You guessed it. The least of our worries. If a show helps him regulate and learn, bring on the episodes.

Instead, our top worries might look more like:

• How do we advocate for the right therapies and interventions?

• Is he comfortable, safe, and getting what he needs?

• How can we navigate the medical system without losing our sanity?

And honestly? Once you’ve been through hospital stays, medical uncertainties, and the exhausting dance of fighting for the right support, things like bedtime battles and loud vocal stims don’t seem like problems. They seem like privileges.

Finding the Joy in the Noise

That’s not to say that I don’t, on occasion, dream of a night where I don’t have to press an earplug in deeper at 3 am But I wouldn’t trade Elias’s beautiful, loud, unfiltered joy for the world.

Because when you’re raising a child with complex needs, you come to understand something that’s hard to explain to those outside this journey: every challenge is wrapped in gratitude.

So if my biggest “problem” tonight is that my child is humming to his hearts content instead of sleeping? Well, that’s the least of my worries.