Cerebral Palsy Books & Videos

General Reference

	The Cerebral Palsy Tool Kit: From Diagnosis to Understanding Our 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.
	Wellbeing for Parents and Caregivers Our 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.
	Cerebral Palsy: A Complete Guide for Caregiving by Freeman Miller and Steven J. Bachrach Written 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.
	Children with Cerebral Palsy: A Parent’s Guide by Elaine Geralis This 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.
	Finnie’s Handling the Young Child with Cerebral Palsy Finnie’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.
	Children and Youth with Complex Cerebral Palsy This 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.
	Pure Grit: Stories of Remarkable People Living with Physical Disability by Lily Collison and Kara Buckley Authors 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.
	Rolling through Life: Camp Handican by Russell W. Thompson Rolling 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.
	Spastic Diplegia Bilateral Cerebral Palsy by Lily Collison An 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.
	Some Like Me by John W. Quinn In 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.
	The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving by Donna Thomson This 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.
	The Special Needs Planning Guide by John Nadworny and Cynthia Haddad Developed 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.
	What I Wish I Knew Back Then by Marsh Naidoo, PT Written 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.
	Wheels Galore by Lain Macloed Through 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.
	Cerebral Palsy from Diagnosis to Adult Life by Peter Rosenbaum and Luis Rosenbloom The 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.
	Seizures and Epilepsy in Childhood: A Guide by Freeman MD, Vining, MD This 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.

For Adults

	Eye Can Write by Jonathan Bryan Jonathan Bryan has cerebral palsy and is unable to speak or move his body, except for his eyes. He was locked inside his own mind, a bystander of the outside world until he found a way of communicating by using his eyes. In this book we read learn about Jonathan’s intense passion for life, his mischievous sense of humor, his hopes, his fears and what it’s like to be him.
	If at Birth You Don’t Succeed by Zach Anner Zach is a comedian and an adult with cerebral palsy. In this hilarious and heartfelt memoir, Zach details his life and the importance of finding your passion and path.
	Nujeen by Nujeen Mustafa with Christina Lamb Nujeen is a powerful memoir about a teenager born with cerebral palsy who is caught in the Syrian refugee crisis. She journeys in her wheelchair from war-ravaged Syria to Germany in search of a better life. The grueling sixteen-month journey by foot, boat, and bus took her across Turkey and the Mediterranean to Greece, through Macedonia to Serbia and Hungary, and finally, to Germany. She told a BBC reporter, “You should fight to get what you want in this world.” For millions around the globe, sixteen-year-old Nujeen Mustafa embodies the best of the human spirit. She was denied formal schooling in Syria because of her condition so Nujeen taught herself English by watching American soap operas.
	One More Step by Bonner Paddock In this memoir Bonner Paddock details his climb of Mount Kilimanjaro and competing in a brutal Ironman competition. Bonner swore he wouldn’t let this neurological disorder limit him, and for twenty-nine years he guarded the truth about his health. When a friend’s young son who had CP suddenly passed away, Bonner re-evaluates his life. He began living life differently, pursuing one exhilarating experience at a time—while raising money for children with disabilities along the way.
	Out of My Mind by Sharon M. Draper–A Novel Melody cannot walk or talk, but she has a photographic memory; she can remember every detail of everything she has ever experienced. She is smarter than most of the adults who try to diagnose her and smarter than her classmates-the very same classmates who dismiss her as mentally challenged because she cannot tell them otherwise. Melody refuses to let the people around her define who she is and, she’s determined to let everyone know it – somehow.
	Being Heumann: An Unrepentant Memoir of a Disability Rights Activist by Judith Heumann with Kristen Joiner Being Heumann is a candid, intimate and irreverent memoir from one of the most influential disability rights activist in history. It recounts Judith’s lifelong battle to achieve respect, acceptance, and inclusion in society.

For Children

	Taking Cerebral Palsy to School Written from Chad’s perspective, this book answers many of the questions his classmates have about him having cerebral palsy. Children, teachers, school nurses, parents, and caregivers will learn about what cerebral palsy is, the different kinds of cerebral palsy, and special equipment that is available to help kids with cerebral palsy.
	Rolling Along: The Story of Taylor and His Wheelchair Taylor is a young boy (and twin) with cerebral palsy who is transitioning to using a wheelchair. This small book is very informative and offers genuine insight into this little boys’ feelings.
	Taking Seizures Disorders to School by Kim Gosselin This story dispels the myths and fears surrounding epilepsy in a positive, upbeat and entertaining style while explaining seizures in simple language.
	A Rainbow of Friends This book is for ages 3-5. Friends come in all colors and sizes; they can be funny or serious, musical or athletic, outgoing or quiet. This book reminds children to celebrate their differences because that is what makes each of us so special.
	Roll With It Roll with It tells the story of a vivacious girl with cerebral palsy whose life takes an unexpected turn when she moves to a new town.
	All the Way to the Top: How One Girl’s Fight for Americans with Disabilities Changed Everything by Annette Bay Pimentel This children’s book is about Jennifer Keelan’s life as a young disability rights advocate and her participation in the famous Capitol Crawl. There is also a glossary of terms and related historic events in the back. This is definitely a book worth checking out for your budding activists!
	Private Eye Romeo Riley-A series by April Whitt Romeo was born with cerebral palsy that affects his speech and mobility. It does not, however, affect his ability to solve mysteries! He’s a detective who uses a power wheelchair and speaks with an electronic communication. Romeo’s joy for living and the way he cares for others makes this an engaging and fun book series.
	The Mermaid in the Gherkin Jar by Tony Seymour This fun and imaginative children’s book is suggested for ages 7-11. It offers wisdom, healing and disability education for everyone in the form of an imaginative story. The author has cerebral palsy and wanted to write an adventurous tale featuring a main character who has CP as well. Christopher, the main character attends school for the first time and realizes how different he is from other children. He befriends a mermaid with a disability of her own. Their relationship redefines them both. Rarely, does one find main characters with disabilities in books for kids and especially in a well told story.

For Dads

A four-panel colorful illustration of fathers supporting their children in various activities outside and around the home.

Uncommon Fathers: Reflections on Raising a Child with a Disability

A compelling collection of essays by fathers who were asked to reflect and write about the life-altering experience of having a child with a disability. Nineteen fathers have taken an introspective and honest look at this deeply emotional subject, offering a seldom-heard perspective on raising children with special needs. This is the first book written for fathers by fathers.

For Siblings

For Couples

Gold overlapping wedding rings against a sky-blue background, with a photograph of a child’s hand clasping an adult’s finger.

Married with Special-Needs Children: A Couples’ Guide to Keeping Connected

The book addresses a broad range of marital and parenting issues and dynamics that typically arise when a couple has a child with a disability. It includes common problems such as communication breakdowns, lack of romance and sexual intimacy, differing expectations of the child and more. It also offers suggestions on how to connect with one another and find time alone as a couple amid childcare demands.

Dystonia Webinars

	Research CP “Dystonia Edition” Webinar #1 – Overview and Definitions This 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.
	Research CP Dystonia Edition Webinar #2 A Care Pathway for Dystonia Dr. 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).
	Research CP Dystonia Edition Webinar #3 Current Research and Gaps Michael 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.
	Research CP Dystonia Edition Results This 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.

MyCP Webinars

	Adult Health and Wellbeing in Cerebral Palsy In the first of the MyCP webinar series, Dr. Mary Gannotti, a Professor at University of Hartford and the co-leader of the Cerebral Palsy Research Network’s adult study group, presents the preliminary findings from the CPRN adult registry.
	Report from the CPRN Cerebral Palsy Registry Dr. Garey Noritz, a developmental pediatrician and internist at Nationwide Children’s Hospital, gives a community focused update on the CPRN Cerebral Palsy Registry.
	Cerebral Palsy and Epilepsy Dr. Adam Ostendorf, pediatric neurologist from Nationwide Children’s Hospital and principal investigator for the CPRN epilepsy study group presents the findings about people with CP and epilepsy from the CPRN registry.
	MyCP Webinar: Practice Variation in Spasticity Management Paul Gross describes CPRN’s qualitative study of practice variation in the management of spastic diplegia and also provides quantitative data from the CPRN CP Registry.
	Interview with Lily Collison CPRN Chairman Paul Gross interviews author of Spastic Diplegia — Bilateral Cerebral Palsy about her new book, motivations for writing it and her son Tommy.
	Genetics and Cerebral Palsy Dr. Michael Kruer, a pediatric movement disorders neurologist and neurogeneticist, describes his study of CP genetics to address the question of what difference does it make?
	MyCP Webinar: Can we make patient reported outcome measures useful for patients and parents? Dr. Unni Narayanan, orthopedic surgeon at SickKids, describes his research to determine if patient reported outcome measures for cerebral palsy can be used to enhance shared decision making between clinicians and patients/families.
	MyCP Webinar 7 Speech & Language Predictors of Participation CPRN’s MyCP Webinar series #7 with Dr. Kristen Allison describing her research into speech and language predictors of participation for children with cerebral palsy.
	MyCP Webinar: Using Grip Strength to Assess Body Composition Dr. Ed Hurvitz, Chair of Physical Medicine and Rehabilitation at the University of Michigan, presents his research to test the feasibility of using grip strength to assess body composition in people with cerebral palsy. Body composition is an important predictor of health risks and health outcomes but it is hard to assess in CP because traditional measurements like body mass index are not meaningful. Dr. Hurvitz explains the the problems with traditional measurements and shares the aims of his recently funded study.
	Research CP Dystonia Edition Results This 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.
	MyCP Webinar on Genetic Causes of CP with Dr. Michael Kruer Dr. Kruer describes recent findings in genetic causes of CP, how new findings will help improve treatments, and the details of his new study that is launching in March 2021.
	MyCP Webinar Discovery and Improved Health from your Lived Experience This webinar describes the cerebral palsy research discovery opportunities that be enabled by connecting information sources like health records with your “lived experiences” while preserving privacy. Dr. Kean describes how the CP Research Network is generating privacy preserving keys to unlock information silos and make new findings that can improve health care for people with CP.

Research CP Webinars

	Research CP Update from CPRN CPRN Chairmand and Founder Paul Gross describes the progress toward achieving the patient-centered research agenda defined by the Research CP initiative.
	Research CP Webinar #1 Overview This webinar provides an overview of the planned Research CP initiative to set a patient-centered research agenda for cerebral palsy. The webinar was developed as a collaboration between CPRN and CP NOW. The webinar features CPRN founder Paul Gross and Dr. Ed Hurvitz of University of Michigan.
	Research CP Webinar #2 Clinical Research This webinar describes different aspects of clinical research and comparative effectiveness research. Dr. Susan Horn of the University of Utah presents this valuable information along with a methodology called Practice Based Evidence.,/td>
	Research CP Webinar #3 – Quality Improvement This webinar describes Quality Improvement as a methodology and features Dr. Amy Bailes of Cincinnati Children’s Hospital.
	Research CP Webinar #4 Patient Centered Research and Patient Reported Outcomes This webinar features Dr. Jacob Kean of the University of Utah talking about the shift to patient-centered research and using patient reported outcome measures.
	Research CP Webinar #5 – Patient Registries This webinar describes the research benefits of various types of patient registries. It features Dr. Jay Riva-Cambrin of the Hydrocephalus Clinical Research Network (HCRN) and Megan O’Boyle of Principal Investigator for the Phelan McDermid Syndrome International Research Registry. It also covers the types of registries supported by CPRN.

Education

	Michele Shusterman – the CP Tool Kit (2016 AACPDM) Michele Shusterman, Founder and President of CP NOW, receives the Making a Difference Award at the 2016 AACPDM Annual Meeting and presents: The CP Tool Kit: From Chaos to Cohesion Making sense of CP for Caregivers
	Paul Gross, BA – Advancing person-centered research for CP (2016 AACPDM Community Forum) Paul Gross, BA, Founder of CPRN Mary Ganotti, PT Deborah Thorpe, PT The Cerebral Palsy Research Network: Advancing Person-Centered Research for CP
	Dr. Ronna Linroth – Job site accommodations for transition-age youth (2016 AACPDM Community Forum)
	Melanie Brittingham – Being brave on behalf of your child (2016 AACPDM Community Forum)
	Dr. Nienke Dosa, Lisa Neville OTR — Inclusive fitness (2016 AACPDM Community Forum)
	Carol Shrader – Facilitating the transition into adulthood (2016 AACPDM Community Forum)
	Dr. Yannick Bleyenheuft — Intensive training in Cerebral Palsy (2016 AACPDM Community Forum)
	Dr. Elise Davis — Facilitating wellbeing for parents and caregivers (2016 AACPDM Community Forum)
	Dr. Karen Harpster — Understanding Cortical Visual Impairment (2016 AACPDM Community Forum)
	Dr. Margaret Wallen — A tool for CP interventions/treatments (2016 AACPDM Community Forum)
	Dr. Freeman Miller — Orthopedics and Cerebral Palsy (2016 AACPDM Community Forum)
	Dr. Unni Narayanan — Welcome from the President of the AACPDM (2016 AACPDM Community Forum)
	Dr. David P Roye Jr. — Pain in adults with Cerebral Palsy (2016 AACPDM Community Forum)
	Dr. Veronica Schiariti —Evaluating pain in children w/ Cerebral Palsy (2016 AACPDM Community Forum)
	Michele Shusterman — Intro (2016 AACPDM Community Forum)
	Dr. Iona Novak — The state of stem cell research for Cerebral Palsy (2016 AACPDM Community Forum)

Digital books and website resources

The Cerebral Palsy Tool Kit: From Diagnosis to Understanding

Our 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.

Wellbeing for Parents and Caregivers

Our 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.

A screen shot of the Child Neurology Foundation webpage for cerebral palsy

Child Neurology Foundation website

The 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.

Co-Conditions

Cerebral Palsy Books & Videos

The Cerebral Palsy Tool Kit: From Diagnosis to Understanding

Wellbeing for Parents and Caregivers

Cerebral Palsy: A Complete Guide for Caregiving by Freeman Miller and Steven J. Bachrach

Children with Cerebral Palsy: A Parent’s Guide by Elaine Geralis

Finnie’s Handling the Young Child with Cerebral Palsy

Children and Youth with Complex Cerebral Palsy

Pure Grit: Stories of Remarkable People Living with Physical Disability by Lily Collison and Kara Buckley

Rolling through Life: Camp Handican by Russell W. Thompson

Spastic Diplegia Bilateral Cerebral Palsy by Lily Collison

Some Like Me by John W. Quinn

The Four Walls of My Freedom: Lessons I’ve Learned from a Life of Caregiving by Donna Thomson

The Special Needs Planning Guide by John Nadworny and Cynthia Haddad

What I Wish I Knew Back Then by Marsh Naidoo, PT

Wheels Galore by Lain Macloed

Cerebral Palsy from Diagnosis to Adult Life by Peter Rosenbaum and Luis Rosenbloom

Seizures and Epilepsy in Childhood: A Guide by Freeman MD, Vining, MD

Research CP “Dystonia Edition” Webinar #1 – Overview and Definitions

Research CP Dystonia Edition Webinar #2 A Care Pathway for Dystonia

Research CP Dystonia Edition Webinar #3 Current Research and Gaps

Research CP Dystonia Edition Results

The Cerebral Palsy Tool Kit: From Diagnosis to Understanding

Wellbeing for Parents and Caregivers

Child Neurology Foundation website

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