Written by Jessica Frew, this book is about her experiences growing up using a communication device, including the challenges she faced.
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.
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.
I have cerebral palsy spastic diplegia. So it affects my legs and sometimes my fine motor skills. I walk with two canes. I do things a little slower, but I get things done.
One thing that parents can say to start a conversation with their kids is, "Let's talk".
When you use alternate means of communication it can be really frustrating to go out in community. It is hard to know whether people are understanding you and whether they will take the time to listen. A lot of times it's hard for people to admit that they're not always comfortable with a device or a wheelchair or person who does things differently. So the more we can expose and educate people the better off we all will be. When we talk about acceptance, we're not just talking about people in society accepting people with disabilities. We're also talking about people with disabilities who are using alternate means of communication and how difficult it is for them to be out in the community.
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.
Everybody tells stories, and that includes people who use communication systems. To ensure success and the ability to participate we need to make it as easy as possible. So that we can tell stories whenever we want, wherever we want, to whomever we want, and in a really easy way, so we can be successful.
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.