20 Cerebral Palsy Resources You Should Know About

Posted on: Thursday, November 7th, 2013

Amy Tripp

The following is an article from a recent: The Friendship Circle Blog – Special Needs Resource for Parents and Educators, written by Lauren Lewis.  I hope you find it helpful.

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About 1 in 323 children has been identified with Cerebral Palsy according to estimates from CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network. There is an abundance of information regarding CP out there. However, it can be overwhelming sifting through all of that knowledge.

Here is a list of great resources regarding CP, including research articles, books, support organizations, blogs, and more.

Have another great resource to add? Let us know in the comments below!

About Cerebral Palsy

1. My Child at CerebralPalsy.org

Provides a comprehensive resource, including a website and call center that parents and caregivers of children with special needs can turn to for needed, non-legal help, information and resources.The website includes a community blog where you can exchange information and be inspired.

2. Kids Health

KidsHealth is the place to help explain CP to parents, teens and children. It provides simple explanations about CP that is easy for people of all ages to understand.

3. Mayo Clinic

Mayo Clinic gives a comprehensive overview of CP and provides parents with basic information about the support and resources you need, including symptoms, causes, risk factors, complications, and tests.

Cerebral Palsy Organizations

4. United Cerebral Palsy

Educates, advocates and provides support services to ensure a life without limits for people with a spectrum of disabilities. From home ownership to health care reform, inclusive education to competitive employment, UCP has established itself as a leader in the disability community.

5. Cerebral Palsy Family Network

The CP Family Network mission is to provide information to all cerebral palsy families about diagnosis, treatments and resources for their child and to provide information and legal resources to families that suspect a preventable birth injury may have caused their child’s CP.

6. Cerebral Palsy Support Network

The Cerebral Palsy Support Network is dedicated to providing information, resources, and support to children and adults with CP, as well as working helping their families cope and understand CP.

Cerebral Palsy Research

7. Cerebral Palsy International Research Foundation

CPIRF is dedicated to funding research and educational activities directly relevant to discovering the cause, cure and evidence based care for those with cerebral palsy and related developmental disabilities.

8. CDC Cerebral Palsy Research 

CDC has been studying cerebral palsy (CP) since the early 1980s. This information can help us look for causes and risk factors of cerebral palsy, evaluate the effectiveness of prevention efforts, raise awareness of the signs and symptoms, and help families and communities plan for services.

9. Cerebral Palsy Research Registry

Cerebral Palsy Research Registry (CPRR) is a multi-institutional collaborative effort whose primary mission is to improve our understanding of cerebral palsy. Representatives from Northwestern University Department of Physical Therapy and Human Movement Sciences, the Rehabilitation Institute of Chicago, and the University of Chicago have developed and continually improve the CPRR to promote research and new discovery in the field of cerebral palsy.

10. Columbia University Center for Cerebral Palsy Research

Research projects in this center focus on improving the lives of children with physical disabilities. The staff includes highly skilled physical therapists and occupational therapists and a psychologist, and consultants, including a pediatric neurologist and social worker.

11. Cerebral Palsy Research Consortium of Michigan

The goal of CPRCoM is to promote and accelerate cerebral palsy (CP) research aimed at measuring prevention strategies, treatment outcomes, and maximizing quality of life and community participation for persons with CP. United Cerebral Palsy of Michigan and the Ann Arbor Center for Independent Living are community partners of the CPRCoM.

Blogs

12. Love That Max

Ellen Seidman started Love That Maxi in October 2008 as an inspirational, informational, occasionally irreverent blog. She regularly writes about her son, Max, who was born with Cerebral Palsy. In addition she writes about topics that are relevant to special needs families.

13. Aaronverse

Recently profiled in the New York Times, Aaronverse is a Tumblr blog where Aaron Philip writes about his life dealing with his disability, and how it makes things different for him. He also post drawings, Frederator things, Pusheen stuff, Adventure Time and anything interesting.

14. The CP Diary

“What is it like living with cerebral palsy? I cannot truly answer that question as for 46 years of my life I didn’t know it was, because at the end of March 2009 I was finally diagnosed. How did I feel as the child then, the adult now? Those times were enormously difficult for me. Some days I felt isolated, angry, cheated, misunderstood and frustrated. Other days I felt insular and alone. It wasn’t something my family talked about. “There was never anything wrong with me.” It was never brought up unless I talked about it then it was quickly dismissed like hot cakes as if the condition didn’t exist. But it did!”

Books about Cerebral Palsy

15. Out Of My Mind

Melod12y is not like most people. She 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 in her integrated classroom—the very same classmates who dismiss her as mentally challenged, because she cannot tell them otherwise. But Melody refuses to be defined by cerebral palsy. And she’s determined to let everyone know it…somehow. In this breakthrough story—reminiscent of The Diving Bell and the Butterfly—from multiple Coretta Scott King Award-winner Sharon Draper, readers will come to know a brilliant mind and a brave spirit who will change forever how they look at anyone with a disability.

16. Children with Cerebral Palsy: A Parent’s Guide

The future is brighter then ever for children with cerebral palsy — the most common developmental disability among young people today. With advances in medicine, early intervention, and therapy, these children can maximize their potential and lead healthy, rewarding lives. But perhaps the most important influence of all comes from parents who provide constant support and encouragement. This is essential reading for all parents who want to learn about cerebral palsy and how it will affect their child and family.

17. Teaching Motor Skills to Children With Cerebral Palsy And Similar Movement Disorders: A Guide for Parents And Professionals

All children with cerebral palsy and other conditions that result in gross motor delays need help and reinforcement to learn basic motor skills, usually with assistance from a physical therapist. Because the degree of developmental delay varies greatly from child to child, a thorough motor evaluation is an important step before establishing a specific therapy plan.

18. Cerebral Palsy: A Complete Guide for Caregiving

The book is organized into three parts. In the first, the authors describe specific patterns of involvement (hemiplegia, diplegia, quadriplegia), explain the medical and psychosocial implications of these conditions, and tell parents how to be effective advocates for their child. In the second part, the authors provide a wealth of practical advice about caregiving from nutrition to mobility. Part three features an extensive alphabetically arranged encyclopedia that defines and describes medical terms and diagnoses, medical and surgical procedures, and orthopedic and other assistive devices. Also included are lists of resources and recommended reading.

19. Nathan’s Wish: A Story About Cerebral Palsy

Nathan struggles with cerebral palsy. The plot centers around a wounded owl that ends up in the care of the boy’s neighbor, Miss Sandy, a Raptor Rehabilitator. The bird, named Fire because of her bright yellow eyes, fails to regain the use of her broken wing, and both she and Nathan take the defeat extremely hard.

20. Mommy, Can I Play with Tommy?

“Mommy, Can I Play with Tommy?” is a story about a playground experience that provides children a new perspective on how to include a child with cerebral palsy.

mm By: Amy Tripp
Amy Tripp

Posted in The Special Needs Press