Navigating our journey with Cerebral Palsy
LEADING THE WAY....Cerebral Palsy
Part of my passion for this program came out of my own experience as a mom. When my son was diagnosed with cerebral palsy I found myself navigating what seemed like an overwhelming healthcare system. I became determined to empower not only myself but especially my son. I believe it can be possible to lead the way in health care decisions at any age. I wanted my son to have the choice to be a leader in his own journey with cerebral palsy.
The CDC defines Cerebral Palsy as "a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles...."
In our personal journey, a focus on- "problems with using muscles" has often hindered our exploration of Damian's preferred movement. For Damian, we have found that utilizing modalities that focus on the "possible" are what has been most effective. For a while we were on a path of traditional therapies and interventions all that were focused on the "problems". We would hear ideas that included surgery to "fix" the foot, medication to relax the high tone, or physical therapy interventions that forced Damian's body to be "corrected". We stumbled upon innovative approaches that included the Anat Baniel Method based on Feldenkrais's work. In addition, we found a method called NDT (neurodevelopmental therapy) which Damian experiences four days a week at the SMILE CENTER in Manhattan. These approaches are focused on Damian's strengths. These techniques allow Damian to LEAD the way to finding his most comfortable way of moving. Damian's ABM practitioner, Sharon Oliensis, shared with us the idea of shifting our goal from "walking" to "the joy of movement". This simple shift has made a significant impact on my son Damian. In observing his "way" we both experience a joyful relationship with his movement. This is not to say we don't have set backs, and frustrations but shifting our goals to something that reflects Damian's joy is what is not only most important but also most effective. I think often we can miss that movement is a personal journey. To me, when the goal is about making the person move like someone else we have gotten off track. I am privileged to be a part of Damian's way.
