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The Cerebral Palsy Tool Kit: From Diagnosis to UnderstandingOur Cerebral Palsy Tool Kit was created to help you sort through the initial emotions in response to your child or loved one receiving a diagnosis of cerebral palsy and to answer your questions and concerns related to cerebral palsy. It will guide you through the initial diagnosis period, direct you to other helpful resources and provide information to you about the different approaches to treating and managing cerebral palsy. *Available in both English, Portuguese and Spanish versions for free here. |
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Wellbeing for Parents and CaregiversOur wellbeing resource is a supportive and evidence based source of information about caregivers caring for themselves. It is designed for parents and caregivers who are raising a child, adolescent or young adult with cerebral palsy or another disability. It’s free to download the Wellbeing guide from our website. |
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Cerebral Palsy: A Complete Guide for Caregiving by Freeman Miller and Steven J. BachrachWritten by a team of experts associated with the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children, this resource provides parents and families with vital information that can help them cope with uncertainty. Thoroughly updated and revised to incorporate the latest medical advances, the second edition is a comprehensive guide to cerebral palsy. It is helpful for offering some guidance not only in signaling that your child may need assistance at different stages, but also as a way of offering reassurance about misconceptions or misunderstandings you may have had about your child’s development that may be typical. It tackles some large topics very well including navigating health care, the legal and educational systems and being an adult with CP. The very end of the book includes a CP encyclopedia. |
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Children with Cerebral Palsy: A Parent’s Guide by Elaine GeralisThis guide provides information for parents who want to learn about cerebral palsy and how it affects their child and family during the first five years of life. It is a great “first book” to have by your side. It is easy to quickly access reliable information. The book is edited by a mother of a child with cerebral palsy and is written in cooperation with several experts who focus on their particular topic. |
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Finnie’s Handling the Young Child with Cerebral PalsyFinnie’s Handling the Young Child with Cerebral Palsy at Home has been updated to reflect the current practices of today. It aims to help parents assist their child with cerebral palsy (CP) towards achieving the most comfortable independence in all activities. It is hoped to show how, by using typical parenting skills, which involve guiding and exposing a child to develop through challenging experiences, the child with CP will also develop. The book is also intended to help professionals and other carers new to this field understand, support and encourage young children with CP and their families. |
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Children and Youth with Complex Cerebral PalsyThis comprehensive resource focuses on the care and management of children with CP who have more complex medical needs. Edited by two leading developmental pediatricians, this is a fantastic resource for clinicians and families. Chapter 21 “Through the eyes of parents”, was co-written by Michele Shusterman, co-founder of the CP Research Network. |
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Pure Grit: Stories of Remarkable People Living with Physical Disability by Lily Collison and Kara BuckleyAuthors Collison and Buckley interview 19 adults with a variety of disabilities that have accomplished extraordinary things in life. The book features numerous paralympians, a doctor, a Canadian senator, executives and other people who have had significant impact on the world. Several people with cerebral palsy are interviewed. The stories contained within are inspirational, moving, and informative. Parents of children with disabilities will learn key lessons in how to raise a child to maximize his or her potential. |
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Rolling through Life: Camp Handican by Russell W. ThompsonRolling through life, Camp HandiCan is a humorous look at life through the eyes of a wheelchair user. J. Alan Wayne’s life changes when he begins working with teens with disabilities. Expecting to be a volunteer working with hand bikes a couple hours a day, he is hired as a cabin dad for 8 teenagers in a summer camp. Russell Thompson, the author, has CP and has been restricted to a wheelchair for the last ten years. You can follow his blog at parabled.com. |
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Spastic Diplegia Bilateral Cerebral Palsy by Lily CollisonAn empowering and evidence based practical resource that will help families understand the movement problems associated with spastic diplegia. The author is a parent advocate and the information she provides has been edited by leading CP professionals. A sample of the book is available here. All proceeds go to CP research. |
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Some Like Me by John W. QuinnIn this memoir John Quinn shares how he fought to pursue his childhood dream of having a naval career. After failing the physical exam, he underwent painful physical therapy for one year before successfully passing a second exam. He kept his cerebral palsy a secret from record-keepers and medical authorities for 20 years. He had a distinguished and highly decorated career despite the pain he endured to hide is disability. He served on board destroyers, a battleship, two aircraft carriers and functioned as an administrator for a Seal unit. |
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The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving by Donna ThomsonThis family memoir is author Donna Thomson’s account of raising her son Nicolas who has cerebral palsy. Here, she vividly describes her experience in navigating her son’s daily care, emergencies, and medical bureaucracy. She passionately illustrates the vital contribution that people with disabilities make to our society and addresses the ethics and economics of giving and receiving care. Donna seeks to change the way society thinks about the “good life”, and her work touches anyone who has ever cared for the life of another. |
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The Special Needs Planning Guide by John Nadworny and Cynthia HaddadDeveloped by two financial planning experts who also have family members with extra needs, this resource was written to help parents and other caregivers plan for their family’s financial security. Included are tools families need to create an effective action plan for their finances: planning checklists and forms, and a helpful glossary of financial terms. |
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What I Wish I Knew Back Then by Marsh Naidoo, PTWritten by parents of kids with disabilities, the book’s primary author is also the parent of a child with cerebral palsy. She sets out to empower and educate other parents who are feeling anxious and afraid about having a child with a developmental delay or disability. |
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Wheels Galore by Lain MacloedThrough his unique blend of Scottish good humour, real-life experience, and funny stories of mishaps and misadventures, Iain M. MacLeod draws the reader into his vibrant life from childhood to the present. He races from one adventure to the next from his tricycle as a small child to his first wheelchair and first car, and many more adapted cars that follow. |
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Cerebral Palsy from Diagnosis to Adult Life by Peter Rosenbaum and Luis RosenbloomThe book provides readers with an understanding of cerebral palsy (CP) as a developmental as well as a neurological condition. It details the causes as well as conditions and symptoms of CP. It’s unique in that it emphasizes what can be done to promote child and family development, nurture the capabilities of young people with CP, empower their families, and chart a course into adulthood. The authors cover the wide range of functional impairments that are seen in both children and adults with cerebral palsy. The intended audience is family members, adults with CP and professionals. |
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Seizures and Epilepsy in Childhood: A Guide by Freeman MD, Vining, MDThis is an empowering, smart, and comprehensive resource about seizures. It is easy to read and access information, but also offers great detail for those readers who desire it. |
Research CP “Dystonia Edition” Webinar #1 – Overview and DefinitionsThis webinar is the first in a three part series for the CPRN/CP NOW Research CP “Dystonia Edition” initiative to set a patient centered research agenda for dystonia in CP presented by Paul Gross and Bhooma Aravamuthan, MD DPhil, a pediatric neurologist from St. Louis Children’s Hospital and Washington University. |
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Research CP Dystonia Edition Webinar #2 A Care Pathway for DystoniaDr. Darcy Fehlings, Professor of Pediatrics at University of Toronto, explains the Care Pathway for Dystonia in Cerebral Palsy and the creation and use of the Hypertonia Assessment Tool (HA). |
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Research CP Dystonia Edition Webinar #3 Current Research and GapsMichael Kruer, MD, talks about current research and gaps in treatment for dystonia in cerebral palsy in this third webinar in Research CP Dystonia Edition — an initiative to set a patient-centered research agenda for CP. |
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Research CP Dystonia Edition ResultsThis webinar covers the results of the CP Research Network’s Research CP: Dystonia Edition initiative. It describes the process, methodology and results in our effort to set a patient-centered research agenda for dystonia in CP. We cover the top ten themes for research and the underlying uncertainties developed by a community of people with CP, parents and caregivers and clinicians. |
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The Cerebral Palsy Tool Kit: From Diagnosis to UnderstandingOur Cerebral Palsy Tool Kit was created to help you sort through the initial emotions in response to your child or loved one receiving a diagnosis of cerebral palsy and to answer your questions and concerns related to cerebral palsy. It will guide you through the initial diagnosis period, direct you to other helpful resources and provide information to you about the different approaches to treating and managing cerebral palsy. *Available in both English, Portuguese and Spanish versions for free here. |
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Wellbeing for Parents and CaregiversOur wellbeing resource is a supportive and evidence based source of information about caregivers caring for themselves. It is designed for parents and caregivers who are raising a child, adolescent or young adult with cerebral palsy or another disability. It’s free to download the Wellbeing guide from our website. |
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Child Neurology Foundation websiteThe Child Neurology Foundation is committed to helping children and their families living with a neurologic condition receive the best quality of care — and achieve their highest quality of life — by providing information, education, and one-on-one support when it’s needed most. Their cerebral palsy page provides a good summary of issues with cerebral palsy in addition to their support services. |