Misty Campbell is parent of child with complex disabilities who wrote this book as a guide for other families to advocate for their own children with significant disabilities.
The Cerebral Palsy Foundation has created a factsheet to help guide you in understanding and treating pain with CP. This fact sheet has been created for individuals with cerebral palsy to provide basic guidance surrounding common causes and potential treatment of pain.
As a mother and a pediatrician, I’ve both felt the strain of pandemic parenting directly and indirectly. I’ve made decisions about my own family and sending our kids to daycare and school, and I’ve stayed up worrying about how parents are supposed to make these difficult choices with so little support.
Cerebral palsy refers to a group of conditions that are caused by problems in brain development and that affect how movement and motor control happen in children. Problems with walking and talking are often the way people start a conversation about cerebral palsy.
Children with cerebral palsy have more complex self-management and self-care demands than children who are typically developing. They have to learn how to deal with medications and they may have to deal with medical equipment. At some point, they're going to have to learn about medical appointments.
There are a couple of key things to think about in helping children and adolescents make the transition into young adulthood and independence. One of those things is called mastery motivation and we can see mastery motivation early in life. It's the ability to persist in the face of challenge. If you're growing up with a disability, it can be harder to do things. If you are not challenged, if the environment is not set up correctly, or if you don't have the resources, then you start to feel that you can't master certain kinds of tasks.
Cerebral palsy is an injury to the brain, but what we find is that it has a lot of effects on how you use your muscles.
For people with a physical disability, activity is a lifestyle. It's something that can start in physical therapy, but it really is something that has to be carried over into their everyday lives. What has happened over the years is we're understanding the importance of mobility.
One of the things that we typically forget when we look at kids who have conditions like CP, is that they're first and foremost, children.
The World Health Organization has developed the ‘International Classification of Function’. This gives us a way to think about any health condition. Here we can see many ideas that we need to think about with CP. We can also see how these many ideas are connected to one another.
Early interventions for CP should be based on the strongest possible scientific evidence for benefit and should have the smallest possible risk of harm. In the US, early intervention (EI) is a system of services available under the age of 3, to support infants and toddlers with developmental problems and their families as they interact with and care for their child.