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Children and Youth with Complex Cerebral Palsy: Care and Management
Written for both clinicians and families, this comprehensive guide to complex cerebral palsy utilizes the ICF to organize and guide the subject matter in order to assist both clinicians and families to maximize participation for those who are impacted more significantly by cerebral palsy.
Book Cover with five photos of youth with cerebral palsy. Top left photo of a boy in a wheelchair wearing a red shirt holding a chicken, top middle photo of a young girl finger painting, top right photo of a toddler in a white dress sitting in the grass, bottom left photo of a teenaged boy wearing a blue shirt in a wheelchair playing baseball, bottom right photo of a girl wearing a black and red cheerleading uniform using a walker
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Cerebral Palsy: A Complete Guide to Caregiving (A Johns Hopkins Press Book)
For three editions now, a team of experts associated with the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children have shared vital information through this authoritative resource for parents, who will turn to it time and time again as their child grows.
Book Cover: Cerebral Palsy: A complete guide to caregiving by Freeman Miller, MD and Steven Bachrach, MD
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Risky Behavior
All adolescents and young adults experience some peer pressure to engage in drinking or other risky behaviors. Adolescents with cerebral palsy engage in risky behaviors just like other teenagers. Some families find it helpful to sign what's called, a Contract for Life, or a Contract for Safety, with their child. The parent agrees not to yell in the moment and to have a conversation about it the next day. That's one way that adolescents and parents can create some zone of safety around drinking.
Family holding a contract for safety
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Teen Years
As we all know, becoming a teenager means significant upheaval, not only physically, but in terms of friendships, in terms of learning, and life outlook. This is also true for adolescents with cerebral palsy and other developmental disabilities. We know that whilst we may of spent a lot of time focusing on their physical abilities and other difficulties it is not the only part of their life.
Representation of three friends with arms around each others shoulders
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Talking About Sex
Up to 50% of adolescents with cerebral palsy have an intellectual disability, as well as a physical disability. Adolescents with intellectual disabilities still need sexual health education, they just need it in a way that's more individualized so that they can understand it and use it.
Representation of a woman surrounded by sexual education related text
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CP: The Early Years
Around the age of six all children are going off to school. Children move from explorative play, which is fairly informal to a much more formal day. That can be a lengthy day and it's quite structured. There are a lot of challenges faced by children with cerebral palsy throughout the school year.
A screenshot from the YouTube video, "The Early Years"
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Mastery Motivation
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.
Representation of a parent cheering on their child with a text bubble above them that reads "You can do it!", while the child who uses a walker prepares to go up the stairs
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Finding Your Passion
We all have different towns and we all have different things that we do in the course of the day. It may be that the student is a great artist or a great writer. When it comes to assistive technology we have to think about what is going to give that student the ability to do what they love without having to see roadblocks and go, "I can't do that”. There are so many tools out there, whether it's a communication app, a video app, a math tool. With assistive technology you are not making the student into what you want them to be.
A screenshot from the YouTube video, "Finding your Passion"
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