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. It is however true that 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 and adults Lori and I 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.
My favorite hobby is endurance running. 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 slowly came to realize that those with CP don’t have this luxury. Every day, even the simplest movements can be very difficult, even exhausting. Those with CP 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 and adults are true superathletes, as their efforts are constant and unnoticed. Most amazingly, the CP folks 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 long running race seem like a trivial event. I’ve used this awareness of these superheroes to try in some small way to begin to understand just how special these individuals really are.
Lori and I have also come to appreciate over time how important supportive networks are for anyone who has a disability. There are many wonderful organizations, both private and public, that provide services, care, and comfort to those with CP and their families. Throughout his life, Jason has benefited from great medical and rehab care, behavioral health assistance, and social network support. He has also been enriched with many activities, including challenger sports such as baseball, basketball, soccer, and bowling, and with artistic outlets such as music. We’ve also had lots of terrific help for Jason at his school, with his physical equipment, and his adult day programs. We are so appreciative of all of these outlets, and especially all of the caring and compassionate people who have given us so much assistance.
However, we’ve also experienced and observed firsthand the many obstacles and challenges that CP families have in getting services, and in creating a thriving environment for their CP child or adult. There are many challenges, ranging from care and support access, to lack of quality and appropriate services, to inadequate financial support for the many systems that are required to allow CP individuals reach their potential. There are also many disparities in care and services, especially for those who are in lower income settings or who may not be familiar with how to navigate the complexities of the local, state, medical, and insurance systems in our country.
For 2021, we are focusing our efforts on this last problem: how can we provide better services for adults with CP, and their families, who desperately need them. We’ve chosen to partner with St Joseph Home, an amazing local provider of adult day, respite care, and in-house residence services. Our Jason has benefited greatly from St Joseph Home and has made many friends amongst the residents and staff. However, SJH’s services are limited by their financial resources. We are helping to fundraise for SJH to allow them to improve and expand their services to those with disabilities who are need.