06/19/2025
We see you, momma, daddy, siblings and those living with the diagnosis...ššš.
What I wish people knew about parents of profoundly autistic childrenā¦
Weāre not just tired. Weāre on alert. Always.
We donāt sleep deeply. We donāt rest fully.
Even when our children are safe, our nervous systems donāt get the memo.
We scan rooms for danger before we enter.
We memorize every object that could be swallowed, shattered, or used to self-harm.
We donāt get to relax at dinner. Or at the park. Or even in our own homes.
We are always calculatingā¦where the exits are, how loud the room is, whether the people near us are kind or curious or about to judge.
We lose track of how many times weāve said ānoā in a day.
Not because we want to but because our childās safety depends on it.
We love fiercely. Unconditionally.
But that love exists alongside grief. Not instead of it.
We grieve the milestones that never come.
The āI love youā weāve never heard.
The hugs that never happen.
The kind of childhood our other kids miss out on.
We have joy. Absolutely.
We celebrate the things most people take for granted.
A shared glance. A smile. A word approximation. A safe day.
But the truth isā¦beneath it all, we are carrying so much.
And no one sees it unless theyāve lived it.
We donāt need pity. We donāt need praise.
We just want people to understand that behind every autistic child is someone fighting, quietly, constantly, and often invisibly, to keep them safe, supported, and seen.
Caregivers matter even if theyāre not the one living with autism. And often, they do too.
