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Kids with cerebral palsy become adults with cerebral palsy.
That sounds obvious, but I think it points to something that is still easy to overlook.
There are often far more resources, services, and support systems available when we are children. Then at some point, often around adulthood, a lot of that changes, becomes harder to access, or disappears altogether.
But cerebral palsy does not disappear when we turn eighteen.
Our bodies continue to adapt, compensate, and work harder to navigate day-to-day life. Over time, that can take a toll.
In this episode, I’m talking about what it means to grow into adulthood with cerebral palsy and why support still matters long after childhood.
I also get into self advocacy.
I believe we need to be honest and direct about what we need, both individually and as a community.
That can be difficult.
A lot of us are extremely independent. If we have some level of independence, we may also be very stubborn about holding onto it and trying to do too much on our own.
Asking for help can feel uncomfortable.
Loosening the reins can feel uncomfortable.
Admitting that something has become harder can feel uncomfortable.
But advocating for yourself does not take away from your independence.
Sometimes it is part of protecting it.
I also talk about the value of sharing our experiences. When we document what day-to-day life with cerebral palsy actually looks like, people have a better opportunity to understand what we need and why those needs do not simply disappear with age.
There can absolutely be frustration, resentment, and bitterness around this.
I have those moments too.
But I think we can acknowledge those feelings while still finding ways to advocate for ourselves clearly, ask for support when we need it, and keep working with our bodies instead of constantly trying to overpower them.
We grew up.
Our cerebral palsy came with us.
And the need for understanding, resources, and support did too.
