Author Archive

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....
The diversity of the CP Community and the many conditions they face

The diversity of the CP Community and the many conditions they face

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...
What is that new gait trainer Maya has been using? It's called the Up and Free and its fantastic!

What is that new gait trainer Maya has been using? It’s called the Up and Free and its fantastic!

**Please note that I have not been paid nor have I bartered to discuss the Up and Free. I just think it’s an awesome piece of equipment and it’s worked so well for Maya that I wanted to share it in case it may work well for some of your children or for adults with CP...
Making decisions about vehicle modifications for passengers with disabilities

Making decisions about vehicle modifications for passengers with disabilities

Please note that this blog post is for educational purposes only. The costs listed here are approximations of what different options for conversions and vehicle modifications may cost. Costs will vary depending on when you read this post, your location, the accessories chosen, the dealers you use and more. Check with your dealer for exact...
Voice Dream--The reading app that just saved us $2700.00

Voice Dream–The reading app that just saved us $2700.00

After more than two years of observing how Maya sees and reads, and almost pulling the trigger on a $3000.00 desktop magnifier/CCTV, we found an app called Voice Dream that addresses Maya’s visual processing and tracking needs!! Woohoo!! This was after a process that included lots of internet research, app trials, device trials and homemade tricks and tips...
O-R-E-O cookie milestone!

O-R-E-O cookie milestone!

This afternoon Maya called me from the other room and asked me to come watch her do something. She was all smiles and she showed me that she is finally able to twist Oreo cookies apart. I would say that is definitely a cool childhood milestone but perhaps one I wasn’t expecting and one I...
Maya's view of herself means more than any disability scale

Maya’s view of herself means more than any disability scale

After hearing me talk about a friend whose child has CP Maya asked me (and in the car of all places), “Is my CP severe Mom?” And then in 30 seconds or less here is what ran through my head: “OMG is she really asking me this question?”, “I can’t lie to her”, “I am...
Maya shapes her identity as a young girl with cerebral palsy

Maya shapes her identity as a young girl with cerebral palsy

Lately, Maya has been crying a lot about having cerebral palsy.  She has cried about having to use a wheelchair, about not being able to move her body the way she wants and about lacking the independence and freedom she desires. She is also frustrated with her epilepsy, her restricted diet and problems with her...