Maya just turned 11 and along with that birthday has been a host of emerging transitions for her and for us. She is a pre-teen now and there are emotional changes, vast physical changes, academic assessments and decisions that we need to make like how she approaches reading and writing and how we physically support…
Many people don’t realize that cerebral palsy (CP) is often the result of an infant brain injury. Our family faced this very frightening circumstance when our daughter Maya was just 34 weeks old and one week after she was born. It was an unexpected event and scary. The worst part about it was that…
Maya and me had some tough arguments today. They weren’t pretty–at all–and her Dad had to mediate between us by comforting Maya and interpreting my intentions. Maya is getting big which requires continuous adjustments to how we approach supporting her physically throughout the day. I always try and give her as many opportunities to…
I have heard may ambulatory adults with CP say how much they enjoy and have benefited from karate. But, I never thought karate could be modified enough for Maya (a wheelchair user with spastic quadriplegia) to both enjoy it and physically challenge herself. She has proven me wrong once again. This year when she told…
It’s almost September and that means that international CP STEPtember challenge is almost underway! This year all of the US funds will go toward cerebral palsy research and CP NOW, our fundraising nonprofit, will be joining in the challenge. We welcome you as members of the CP Daily Living/CP NOW community to join in and help us raise money…
Cerebral Palsy Awareness—“I am aware” by Michele Shusterman, CP NOW & CP Daily Living I am aware that CP is the result of an early brain injury or disturbance in brain development that occurs during pregnancy, during birth or shortly thereafter. I am aware that CP refers to a group of movement disorders that…
This week has been rough for wheelchair access. One of the resource guides CP NOW (our nonprofit-cpnowfoundation.org) is working on this year is about empowering people to advocate for access in their local communities. With lots of persistence and partnership me and another local advocate, an adult wheelchair user and ADA consultant, are opening lines of communication…
Be the change in Cerebral Palsy Research! Get involved! Join us! CP NOW has received an award in partnership with the Cerebral Palsy Research Network (CPRN), and we want you to join an important effort to advance CP research. We are bringing together diverse perspectives and insights from the cerebral palsy (CP) community, including individuals with CP, caregivers and CP medical practitioners and therapists. Learn…
Did you know that 1 in 4 people with CP has a behavior/mental health condition? I often hear privately from parents and adults with CP about their struggles with mental health. There is no shame in bringing these issues forward, and many clinicians believe mental health concerns are under-recognized and under-treated among people with CP….
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…
