Pete says: Cerebral palsy (CP) is a brain injury that usually affects the part of the brain that controls muscle function, especially to arms and legs. There are many possible additional ailments and symptoms, including developmental delay and mental retardation, seizures, hearing and/or vision problems, and feeding and gastrointestinal issues (good summaries are here and here). The good news is that CP is not strictly degenerative, so that the injury generally does not worsen over time (though lack of muscle use and growth does cause problems over time, especially during and after adolescence). What is most frustrating for advancing cerebral palsy care is that because it is caused by injury, every child is somewhat different. Some kids are only slightly affected in their movements and have no observable cognitive problems, while others are wheelchair bound and very low functioning. That makes research very difficult to perform, and therapies also need to be tailored to each person.
Many of the CP kids we have encountered have significant physical challenges. Movement can be difficult despite lots of physical and occupational therapy. This is true because muscle control is often impaired. Also, certain muscles become tighter over time due to bones growing faster than muscles, and muscles are often not exercised as much as a typical child would. Walking, crawling, or even simple arm, finger, or mouth/tongue motions can be very difficult. Some children, including our Jason, also have motor planning issues, where it is difficult for their brains to “tell” a muscle what to do. This can make almost any movement a real struggle.
As much as I love the physical challenge of running long distances, I can train smartly for races and take recovery days or weeks off whenever I need to. I came to realize that CP kids don’t have this luxury. Every day, even the simplest movements can be very difficult, even exhausting. These kids may be exerting the equivalent of an ultramarathon every single day, even though we can’t really see it. Jason gets very tired even after walking for fairly short stretches, and his muscles are incredibly strong in some ways. I now believe that these children are true superathletes, as their efforts are constant and unnoticed. Most amazingly, the CP kids we’ve been around are usually totally accepting of their conditions–they accept their challenged states and keep motoring on every day, usually with a smile on their face. That’s a REAL challenge, one that we think needs to be recognized and celebrated. And it makes an effort like a 100 mile race seem like a trivial event. I’m using this awareness of these sperheroes to try in some small way to begin to understand just how special these kids really are.