There are many people who do not understand the diversity of experiences, conditions and in some cases medical complexity that make up the CP community. I have heard people’s confusion in my own conversations with friends, family members and strangers who often think CP is a similar experience for everyone. I also have seen people in CP groups on social media trying to support one another but missing vital information to offer the right kind of insight. It is critical that in discussing CP people provide background information about what CP looks and feels like in their experience. As an example, you need to know something about an individual’s motor function, type of movement disorder and treatment goals before discussing treatments that fall under the broad category of CP.
The one commonality that people with CP share is that each person has had either an early brain injury or a one-time disturbance in brain development (EDBI) that has led to varying degrees of problems with motor function, muscle coordination and balance. But the conditions and problems individuals may face do not usually end with movement. The EDBI may have lead to other conditions that impact daily life. These conditions, and how severely they affect the individual and family, often become embedded in conversations about CP and how it is portrayed and discussed. It’s important to keep this in mind when talking about “Cerebral Palsy” and to have clarity (when appropriate) about what that means to the person speaking.
Some of the conditions that someone with CP may face include:
I share this information not to dwell on the negative aspects of what can occur when someone has had an EDBI, but to illustrate the complexity and range of the disorders that one may experience. It’s very important to me and to Maya that people don’t get so caught up in her differences that they cannot connect with her as they would any other child. For this reason, I do my best to focus on Maya’s strengths, but there are days where I struggle to support her body’s most basic functions like sleeping, going to the bathroom, or trying to keep seizures at bay. I think it’s important for people to understand these issues as well. Some families struggle and worry every day about helping their children eat, drink, sleep, breathe and remain comfortable in their bodies, and they often don’t have the energy to advocate for themselves. Other individuals may be facing great pain and are concerned about losing function, including the ability to walk, and still others may feel their barriers to communication impact their participation and quality of life more than any other symptom or condition with which they are coping. I am committed to educating people about early brain injury and CP, and ensuring that people’s strengths are recognized while also acknowledging the diversity of concerns individuals face that need to be considered when mobilizing change for the direction of research, treatment and quality of life.
**To learn more about the work I am doing for the CP community please join me on Facebook and visit CP NOW, our fundraising organization focused on education, support and funding pilot studies. Pilot studies are the first phase of scientific research where new and innovative ideas are brought forth for initial safety and efficacy testing. The CP community is in great need of new ideas and treatments, and before researchers can go on to secure larger grants or federal dollars, they need to find money for pilot studies which often comes from private organizations like ours.