23/11/2025
So true
Parenting a Child Who Is Both Neurodivergent and Has Duchenne
Parenting is never simple—but when your child is both neurodivergent and living with Duchenne, the weight you carry becomes something most people can’t even imagine.
Self-care becomes a mythical creature. Everyone tells you to “look after yourself,” but how do you do that when the minute you sit down, someone needs you? When calm moments only exist in theory? When the world around you keeps moving, but yours is built around medication schedules, mobility support, emotional dysregulation, sensory overwhelm, and constant vigilance?
And the practical side… it’s heavy.
If you’re part of a couple, there’s the unspoken tug-of-war of who becomes the “default parent.” Duchenne often requires physical support that one partner may naturally take on more of. Neurodivergence often requires emotional patience that one partner may absorb more of. Suddenly one of you becomes the practical carer, the other the emotional anchor—both roles exhausting in different ways. And sometimes it feels like your child leans on one of you more, leaving the other running on fumes, unseen.
But if you’re a sole parent, the truth cuts even deeper:
There is no swapping out.
No tag-ins.
No backup.
No “you rest, I’ve got this.”
You are the night shift, the day shift, the crisis negotiator, the medical team, the emotional support human, the project manager, and the safety net all at once.
And still, you get up every single day and do it again.
Because here is the part no one tells you:
Parents like us carry invisible weight—weight that never reduces, never resets, never gets shared proportionally. It’s like holding up a mountain with your bare hands while still cooking dinner, managing meltdowns, attending appointments, and comforting fears.
But we keep holding it anyway.
Not because we’re superhuman.
Not because we’re stronger.
But because our children need us—and love fuels a stamina no textbook, no doctor, and no bystander will ever understand.
To every parent carrying infinite weight, to every couple trying to balance the impossible, to every solo parent holding the whole world together with no backup—
You are seen.
You are extraordinary.
And you are doing enough, even on the days that break you.
