14/09/2026
A little reminder for parents, caregivers and families of children living with disability. ❤️
One thing I've learned over the years is that every body is different.
Even when children have the same diagnosis or very similar medical findings, their bodies, abilities, pain, movement, communication and needs can be completely different.
A diagnosis, scan or medical report can tell us a lot, but it cannot tell us everything about what it feels like to live inside that child's body.
As parents, we notice the little things the way our child sits, moves, communicates, reacts to pain, or when something that is supposed to help them doesn't feel right.
I’m naturally a very detailed person, and I notice a lot. I know sometimes people may get tired of hearing all the details, or simply may not have the time to listen to every little thing.
But those observations are part of how I advocate for my child.
Because when you know your child well, the small changes can tell you something. They can tell you when something has changed, when something isn't working, when something is uncomfortable, or when you need to ask another question.
Advocacy isn't about knowing more than the professionals.
It's about bringing what you see, hear and notice every day into the conversation.
Sometimes parents can seem very firm or ask a lot of questions. But sometimes that firmness comes from years of watching your child struggle and suffer.
Don't be afraid to ask questions.
Don't be afraid to say, “That doesn't look right to me.”
Don't be afraid to say, “My child is telling me this hurts.”
And don't assume that what works for one child will automatically work for another simply because they have the same diagnosis.
Every body is different. Every child is different. Every journey is different.
Our children are not just their diagnosis, scans, measurements or equipment.
They are people. They have a voice. And their voice matters.
Listen to them. Believe them. Observe them.
Sometimes the smallest details are the things that help us advocate the strongest. ❤️
