Cerebral Palsy Awareness

5 Things You May Not Realize About Individuals with CP:

​

1. Cerebral Palsy isn't confined to childhood; it's a condition that spans a person's entire life. The actions we take to support children with CP are crucial because they will continue to live with CP as adults.

2. Individuals with Cerebral Palsy shouldn't be considered inspirational solely because of their condition. We're simply living our lives, engaging in everyday activities, albeit in ways that may appear different.

3. Cerebral Palsy is a non-progressive, incurable neurological condition resulting from brain damage occurring before, during, or shortly after birth. The extent and location of the damage determine its effects. Although static, its impact can fluctuate over time.

4. Most individuals with Cerebral Palsy possess average intelligence, and even those with intellectual disabilities have valuable perspectives. Instead of speaking around us, engage directly with us. Communicate with us, even if it's through alternative methods like AAC devices. Children comprehend more than often assumed. By age 2, I grasped the dynamics of my CP-related circumstances.

5. Don’t underestimate the value of lived experience. While medical professionals possess theoretical knowledge and practical skills, individuals with CP contribute a wealth of firsthand experiences accumulated over a lifetime.

​

5 Challenges of Living with Cerebral Palsy in Today's Society:

​

1. Assumptions: “A physical therapist once told me people make assumptions about me until I open my mouth. I’ve never forgotten that. Don’t let quietness fool you.”

2. Ignorance: “Doctors don’t stop knowing what they know just because someone turns 18. What’s true about childhood CP continues to be true for adults even if there are other factors. Conversely, don’t pretend that you know if you don’t because we will know if you don’t know.”

3. Disfunction: “There is a huge emphasis on improving function in children with CP that somehow gets lost as kids grow into teenagers and adults and replaced with a focus on mental health and pain. It’s my opinion that if we focused more on functional gains, there would be fewer mental health problems and less pain. I’ve learned not to settle.”

4. Pain: “In my experience, many people with CP have a very high pain tolerance and will often not talk about or downplay their pain. I’ve fractured bones and gone through entire surgery recoveries completely unphased by pain. For a lot of people with CP, pain is normal. By the time someone with CP is saying they have pain, it’s kind of a big deal. Not every pain is related to CP and not every person with CP has pain.”

5. Understanding: “Probably the most important thing anyone can do for a person with CP is listen. The ability to say I HEAR you and I’m HERE for you is powerful. I was fortunate enough to have OT/PTs who understood me and treated me as an individual instead of just someone with CP. This ended up changing the course of my life and shaping my entire career. It only takes one therapist if it’s the right one. 20 years later, I have the privilege of being able to do for others in my own work what my therapists did for me.”

​