Have you ever wondered what life would be like if you were a child with cerebral palsy today? I recently took my son to the Children’s Hospital of Pennsylvania for headaches. Being there made me think if I had cerebral palsy growing up, what would life be like for me? Has anything changed for athetoid cerebral palsy?
I have athetoid cerebral palsy with a mixture of other types. Athetoid cerebral palsy is unpredictable. Muscles often take control of you regardless of what you would want. Sometimes I’m calm, but anything can set off involuntary movements. Weather changes, mood, sickness, emotions, and wanting to be quiet can affect involuntary movements.
Technology is a huge advantage now as opposed to 40 years ago. The iPad would have made homework so much easier. I used a typewriter or someone to write everything for me back then. The Kindle would have made reading much more feasible. Holding a book was torture for me. I’d sit in the W position and keep either side of the book open with my knees. Even though I loved reading, the position I was in made it too uncomfortable. Athetoid cerebral palsy makes everything shake so holding a book up is almost impossible.
Wheelchairs are entirely different today; As a child now, I could have gotten a wheelchair that lowered to the floor so I could get in and out of my chair independently. I’d love that today, but they don’t make it for adults for some annoying reason. I’m much more independent on the floor, so getting in/out would be amazing. Wheelchairs back then were uncomfortable and looked clinical. Now, I actually want to sit in my wheelchair because it’s comfortable and looks inviting.
I didn’t appreciate it then, but getting therapy is much easier as a child. What would different treatment be available now for me? The physical, occupational, and speech therapy has to be much better now. I don’t think I could walk based on the nature of my cerebral palsy. However, I wonder if I could have a little more control over my muscles.
Socially what would be different? I don’t know. My speech pushes many away. They fear what they don’t understand or feel uncool being around someone other than them. I struggled with social interactions my whole life. I’d love to have friends that invite me to places, call or hang out. But it makes me appreciate everyone I have in my life. Hopefully, the world will be much more accepting of disabilities one day.
