Layered Grief
Twenty years didn’t feel like long enough. Forty-two years certainly was not enough time. Still, eighty-four years wasn’t enough either.
Twenty years didn’t feel like long enough. Forty-two years certainly was not enough time. Still, eighty-four years wasn’t enough either.
Everything felt fast and slightly disorienting — like things were happening around me more than with me.
I felt this urgent need for everyone in that room to be quiet so I could listen for my baby.
What looks like defiance is most often confusion.
What looks like not listening is often him feeling like he’s drinking information from a fire hose.
What looks like a breakdown might be frustration from not having the words to explain what’s going on in his head.
What looks like shutdown is most often his brain reaching its limit.
If I had a nickel for every time someone said, “But he looks normal.”
I know people mean well.
But that sentence carries more weight than most realize.
Nickel from the Jar 🪙
A diagnosis is a lot like a weather forecast.
It tells you the conditions —
not the limits of the sky.
The Zoom call ended.
I opened Google.
And everything in me went hot.
This is the diagnosis I wasn’t ready for — and the truth I had to learn the hard way.
Nobody tells you that becoming a special needs parent also means earning an unofficial PhD in Googling.
Every boundary I set for my child teaches me something about the people around me. Some lean in. Some step back. And some show me, very clearly, that my child’s safety will never matter to them as much as their own comfort.
There was no magic chart. No sticker system. No consequence that fixed it.
What actually helped wasn’t impressive or tidy — it was slowing down, lowering demand, and choosing safety over compliance.
This post is about what didn’t work, what finally did, and the moment I realized regulation wasn’t optional — it was the prerequisite. 🤍
(If this feels familiar, you’re not alone.)
Because now that we understand how everything collides, we can finally talk about what actually helped — at home, at school, and in moments of crisis — and what absolutely didn’t.