Author Archive
Maya's rhythm often leaves her out of the fold

Maya’s rhythm often leaves her out of the fold

“I can’t get my words out as quickly as I want to.” #feelingoutofsync #adifferentrhythm Last night as we were coming back from the Halloween party, Maya stopped at our neighbors house to get some candy. We were on the side of the road (our neighbor came down with her bowl) and she suddenly stopped talking...
Setting a consumer-centered research agenda for CP-Mission accomplished!

Setting a consumer-centered research agenda for CP-Mission accomplished!

  Last summer, CP NOW and the *Cerebral Palsy Research Network (CPRN) hosted Research CP, a comprehensive program designed to develop a *consumer centered research agenda for the CP community. Because of this groundbreaking conference, the CP community has a prioritized list of research topics that are meaningful to individuals with CP and representative of what people...
A letter to my Congressman who supported HR620-The ADA Education and Reform Act

A letter to my Congressman who supported HR620-The ADA Education and Reform Act

  Yesterday I told my South Carolina Congressman what I thought of his support and vote in favor of HR620-The ADA Education and Reform Act.  I had just received a response to my letter asking him to vote against this archaic legislation proposal. His reply detailed his enthusiastic support for its passage in the House of Representatives....
#Transitions

#Transitions

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...
Our Story

Our Story

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 when...
Growing Pains

Growing Pains

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 move...
Karate takes center stage for Maya

Karate takes center stage for Maya

I have heard may ambulatory adults with CP say how much they enjoy and have benefitted 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...

CP NOW will proudly participate in this year’s national STEPtember challenge

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 2017--"I am aware"

Cerebral Palsy Awareness 2017–“I am aware”

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...
A rough week for wheelchair access--"This is the second and last time we will be coming here!" -Maya, age 10

A rough week for wheelchair access–“This is the second and last time we will be coming here!” -Maya, age 10

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...
We need you! Science needs you!

We need you! Science needs you!

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...
Mental Health and Cerebral Palsy

Mental Health and Cerebral Palsy

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....