This list is intended to offer you some of the highlights of reading material, movies, and other media available on the topic of cerebral palsy. This is by no means an exhaustive list. If you are interested in finding out about more sources of information the Christopher and Dana Reeve Foundation website includes a very extensive reading and media list under the “paralysis resource center”, and the book “Children with Cerebral Palsy” has a an excellent list of resources as well.
For information about current research and general news articles see the “CP Research/News” section of the site.
Cerebral Palsy Resource Guides
Children with Cerebral Palsy: A Parent’s Guide by Elaine Geralis: This is a fantastic, reliable resource and 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: In reviewing this book I found myself overwhelmed by the detailed information and textbook presentation of the material. Maya’s grandmother came across it and thought it was wonderful. She suggested I approach it as a reference guide rather than trying to read it cover to cover. After I took this approach (and was more patient) I saw that it offers some of the most valuable information and insightful reminders about caring for a child with CP that I have ever seen in print or even heard someone say. I also would rely upon my child’s physical therapist and/or occupational therapist to assist me in determining which patterns of movement in the book correlate with my child’s situation. Many of the “handling” and positioning diagrams may be difficult to understand and integrate unless you already have been shown the positions illustrated. Lastly, the book assumes access to equipment (particularly home-related adaptations) that many of us do not and will not have access to because they are typically not covered items by insurance. Overall, this is a stellar resource but do take your time with it, and ask for help from a professional if you have difficulty with the material presented.
Cerebral Palsy: A Complete Guide for Caregiving by Freeman Miller and Steven J. Bachrach: This is another excellent resource guide. Whereas Finnie’s book focuses mostly on hand to hand caregiving, this resource focuses more on learning about your child with CP and how it specifically may affect him/her. Again since this is another very in-depth guide I suggest referring to it when you have specific questions rather than sitting down and reading it cover to cover. The formatting can be a bit confusing at first so be sure to read the preface (something I almost never do but in this case I really needed to). One thing this guide offers that I find helpful is a small guide to typical developmental patterns. This 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 also breaks down information by age, specific diagnosis within the realm of CP (i.e hemiplegia, spastic diplegia etc.) and medical problems associated with CP. 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.
I really appreciate the unique approach this book takes which is to further define CP by illustrating how it can be confused with other problems, diagnoses, and symptoms. At the same time I caution people who look to this book to help them diagnose or make their own determinations about their child since you may be drawing inaccurate conclusions and causing yourself needless anxiety.
Early Childhood Development
Caring For Your Baby and Young Child by Steven Shelov: This book is put together by the American Academy of Pediatrics. We have used it as a general care-giving resource and guidebook. It was not created with the special needs child in mind but it does offer solid, informative information about caring for children from birth to age 5. It offers guidance regarding typical developmental milestones, finding care-givers, child safety, handling common childhood emergencies and more. They do include a small chapter on developmental disabilities which contains a section on cerebral palsy.
Your Self-Confident Baby by Magda Gerber and Allison Johnson Although not directed to parents of special needs children, this book is nonetheless important because it teaches parents how they can support the development of a calm, confident, and authentic child, a child in touch with her feelings and accepting of herself. The author emphasizes important concepts which form the foundation of these values. They include parents taking care of themselves, becoming a keen and sensitive observer of your child, creating consistency, and respecting your child’s unique development and nature (for more information about their method and philosophy, see their foundation at www.rie.org). A common pitfall for special needs parents is to view our children as helpless or incapable. We often fall into the thinking that our children suffer enough so we want to minimize their struggles whenever possible: a natural and understandable feeling. Despite the limitations our children may have, it is important to allow them the opportunity to explore their independence (whenever possible) and begin to incrementally master tasks they are capable of doing. Over time, these opportunities build confidence which is ultimately the message the author intends to convey.
However, the book itself only devotes a small section to special needs children (beginning on page 104, and each parent will need to figure out how to adapt the approach to the needs of their child. This section needs more detail to successfully explore the complicated special needs parent/child dynamics. The authors assume an almost seemless transition in applying the method to special needs children. Their tone and lack of detail treats it as so. I think that is a mistake: it’t not that simple. Since the method relies upon the child’s independence, one of my initial questions was how do I responsibly employ this “hands off” method and ensure my child’s self-confidence if her body cannot keep pace with her mind? How do I strike a balance so that my child is not too bored, too frustrated, or too dependent? These are murky waters, and they present a very big challenge for special needs parents. Nonetheless, the book is still important and worthwhile. The author’s emphasis on being a keen observer of your child will help you “read” your child and determine what challenges are appropriate and which leave them needlessly frustrated. Successfully mastering this issue is a key component to helping our children develop healthy self-confidence and maximize their independence. Until someone write a similar book directed at special needs parents and caregivers, this one remains important, in spite of its limitations.
Here is a video taken by a parent using the REI method with her 6-month infant. It’s counter intuitive to how most of us approach being with babies and children but offers some profound wisdom.
Insurance Reimbursement and Finances
Blessed with Autism by Christina Peck: Written by the mother of a child with autism, I have heard of several parents of children with special needs using information in this book to successfully navigate the private insurance reimbursement process. After reviewing the content, I thought it offered very informative and organized information about how to begin to address common issues which may arise with your insurance company. It also details this mom’s journey with her child as it relates to many other topics. Available from: http://www.blessedwithautism.com/
The Special Needs Planning Guide
Uncommon Fathers: Reflections on Raising a Child with a Disability by Donald J. Meyer These are honest, heartfelt essays from fathers of children with disabilities including CP, Autism, and Down’s Syndrome. As a father of a child with CP, I identified with many of the essays and found a silent affirmation of some of the feelings I have had about my daughter and her disability. These fathers discuss pride, shame, regret, love, and dedication through their experiences. Other fathers will find an emotion or essay that resonates with them and gives them comfort, and for that reason, this book is a must read for fathers of children with disabilities.
Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs by Donald J. Meyer: This is a unique and fantastic collection of essays written by siblings who are growing up with a special needs brother or sister. It offers an unusual window into the often overlooked dynamic among siblings in family’s that have a special needs child. The essays are heartwarming, candid, and inspiring. I commend the editor who brings attention and comfort to these children and who also coordinated the book by and for father’s listed above.
Married with Special-Needs Children: A Couples’ Guide to Keeping Connected by Laura Marshak and Fran Prezant: In this resource you will find relevant, candid and relatable information. I highly recommend this book and the sooner a partner or couple reads it the better. You will save yourself lot of grief and stress, and strengthen your marriage, by being aware of the common pitfalls and dynamics that may emerge when you have a special needs child.
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.
Ballerina Dreams by Lauren Thompson: A true story about five little girls with cerebral palsy and other physical disabilities who wanted to be ballerinas and dance onstage like other girls they knew. Thanks to the kind heart and open mind of a local physical therapist, these girls were able to participate in a special ballet class and recital. This is a wonderful children’s book and one of the first about cerebral palsy that really grabbed my daughter’s attention. It is positive, fun, and inspiring.
Taking Seizures Disorders to School by Kim Gosselin: This is a wonderful children’s book (probably elementary school age) that clearly and simply explains what seizures are and dispels myths about the people who have them. It is upbeat and informative. I think adults could benefit from reading it as well.
Mommy I Feel Funny! A Child’s Experience with Epilepsy by Danielle Rocheford and Chris Herrick: Written by an adult who grew up with epilepsy herself, this book is a great source of connection and hope for young children with epilepsy. It is bound to make your child feel less alone.
A Rainbow of Friends by P.K. Hallinan: This is a wonderful little book for young children. I especially appreciate how it articulates the obvious and more subtle differences among children. I plan to give this to my child’s school teacher for their collection.
The Mermaid in The Gerhkin Jar: I loved this children’s book (ages 7-11). It’s a fun and imaginative read that 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. I wish the author the best of success with this book. I look forward to seeing it begin to fill a gap in children’s literature where characters with special needs become the main focus and are presented in capable and relatable ways. Available currently on Kindle and Kindle applications only (you may be able to download a Kindle application for free on certain devices if you follow the instructions on the author’s website).
Seizures and Epilepsy in Childhood A Guide by Freeman MD, Vining MD, and Pillas: Fantastic! How could I possibly be so enthusiastic about a book on this topic? It is empowering, smart, and I would even say a bible for those parents needing guidance about seizures. It is easy to read and access information but also offers great detail for those readers who desire it. I emerged wiser and calmer about my daughter’s condition after reading this book. Bravo to this team of authors!
Mommy, I Wish I Could Tell You What They Did To Me In School Today by Richard Stripp Sr.: A rare book which offers graphic and forthcoming stories and insight into problems with our public special education system. The author is a former special education aide for the state of New Jersey and through this book he presents the stories of 10 mostly non-verbal special needs children based upon relationships and observations Mr. Stripp made while working with them. Mr. Stripp assumes the cognitive and emotional persona of each child and offers each one a voice as if the child were able to speak and offer insight into his condition, behavior, and feelings. This is a powerful book and one that deserves the largest possible audience. I offer a longer review and details of the book in a previous blog post.
Non-traditional Therapies, Approaches, and New Ideas
Move Into Life by Anat Baniel: This is the first book introducing the Anat Baniel Method (ABM). She discusses the “Nine Essentials for Vitality” which form the foundation of how this method works. The book illustrates how initiating these principles helps us learn new ways of being in our body, thinking about ourselves, and how we relate to other people. Rather than being a medical approach, this work is classified as movement re-education. The Anat Baniel Method is profound and powerful. Words cannot do it justice.
Kids Beyond Limits by Anat Baniel: If you have time to read only one book on this list I hope this will be it. The ABM (Anat Baniel Method) based on the work of Moshe Feldenkrais has been the most helpful and powerful information and approach we have found for Maya. It presents a new paradigm for thinking about the special needs child that is gentle, joyful, and effective. Anat believes in communicating with the brain in the most efficient and effective manner possible. After 30 years of practicing this work with thousands of special needs children she has compiled a list of conditions during which the brain is most poised to change its limiting patterns. You can begin to integrate some of these ideas and methods with your child at home. Once we started this approach it became the foundation of our daily interactions with our daughter. **To see my longer review on Amazon click here.
The Brain That Changes Itself by Norman Doidge: This is a fantastic, hopeful,and fascinating resource! Itconfronts the long-standing beliefs about the brain being stagnant and inflexible. According to researchers this is proving (and has been proven for decades) to be anything but true. In the last decade the concept of neuroplasticity has gained momentum in the scientific community. Scientists are developing new ways of helping brain-injured children and adults recover lost functions. This book is interesting in its own right and applicable to improving the health and well-being of all people beyond just the special needs communities.
Yoga for the Special Child by Sonia Sumar: I heard about this book from Uncommon Voyage which is also included in our reading list. It offers a history on Ms. Sumar’s personal experience in using yoga with her daughter who had Down syndrome. She includes several case studies and testimonials about children with special needs and their families who she has worked with at her center. I appreciate the humility and care Ms. Sumar took in putting this resource together so that it is easily understood and relatable. There is good information and descriptions detailing how you may start a home program with your child. I think it would be helpful for the parent or person who wishes to pursue a home-based program to at least take a series of introductory yoga classes. There a few contraindications listed for beginning a home program. In those cases she states that it is imperative to consult with an experienced practitioner since there are some yoga poses which may exacerbate certain conditions.
Craniosacral Therapy What It Is | How It Works by John Upledger: This book provides a broad introduction to Craniosacral therapy (CST) through short essays written by a number of well-known practitioners and experts. Each selection covers a different aspect of CST: what it is, what it does, how it heals, and what to expect during a session. This is also an approach which is best experienced in person to appreciate fully.
The Essential Herb-Drug-Vitamin Interaction Guide by George T. Grossberg, M.D. & Barry Fox: I have found this to be a wonderful resource. Repeatedly I have heard parents of kids with CP incorrectly refer to herbs as inherently safe and harmless. This is not true; particularly if your child takes medication. I recently found two supplements for my daughter that contained ingredients which I found in this book would interfere with the efficacy of her seizure medicine or even could increase seizures.
**See “Biography section below for a book called “Uncommon Voyage”, about a parent advocating for alternative treatments for her son with CP.
Walt Disney World with Disabilities by Stephen Ashley: This is a fantastic resource for families planning a vacation to Disney World. It offers in depth information about how to comfortably and efficiently navigate the parks with detailed information pertaining to attractions and their accessibility and/or health-related cautions. www.Diz-abled.com
Karen: coming soon..
With Love from Karen: coming soon…
**Here is an article updating the public on the family written about in “Karen” and “With Love from Karen”:
Uncommon Voyage: Follow one mother’s journey to help her child by using alternative therapies and treatments. This is an extraordinary window into what it can be like to find your own voice as your child’s advocate. This is especially difficult when parents are facing less known and/or unchartered territory. I value this work for the information it offers about the broad range of effective treatments parents do not typically hear about for CP. I also appreciate the honesty with which it is written. I think it makes it easier for other parents to express their own insecurities, fears, and challenges when they hear a powerful parent being candid about her own.
Many people may not have the financial means to participate in the world of alternative treatments to the degree found in this book. However, it still creates awareness and offers an alternative path for approaching healing and treatment programs for children with CP. The more parents who demand treatments be made available for their children, the more likely it will occur. Just a decade ago it was almost unheard of to have acupuncture covered by insurance but now many policies will cover it because it was working for patients.
Special Needs Magazines/Newsletters
UCP Newsletters: Links to the newsletters published by United Cerebral Palsy
Parenting Special Needs: An online magazine serving the special needs community
Unique Me Magazine: A magazine for families with both typically developing children and those with special needs.
Exceptional Parent Magazine: An online magazine for the special needs community “across the lifespan”
Ability Magazine: A leading magazine covering health, disability and human potential
WrightsLaw: An online resource site dedicated to special needs education law and advocacy
Florida Across Roads: An online newsletter for special needs families in Florida
These Broken Vases: Writer Ellen Stumbo details her journey with her three children two of whom have special needs. One of her children has Down syndrome and another has cerebral palsy. Her easy to be with spirit, along with her honesty and humility shine through her writing.
Outrageous Fortune: Blog of a former journalist, writer, and mother of twins one of whom has CP. This mom is intelligent, creative, resourceful and humorous. She writes about aspects of interpersonal interactions and life that make me laugh and cry.
Love That Max: A heavily awarded “mom blog” about life with her son who has CP, this mom is also a professional writer and has a blog called “To the Max” on Parents.com. I find her posts honest, fun and pertinent. She has a huge following and is privy to lots of good information and resources for special needs parents.
Bringing the Sunshine: Journey with this mom who has a daughter with CP and a son with Down Syndrome.
The Little Life: a completed year-long daily blog of a single mother with three children who have CP
Little Bill episode called Monty’s Roar-an episode of the children’s show Little Bill where he meets and befriends a little boy with CP.
Including Samuel: review coming soon…
King Gimp: review coming soon…
Door to Door: review coming soon…
My Left Foot: A great film base on a book by the same title. This is the story of Christy Brown who was born with cerebral palsy in Ireland in 1932. He was the 1oth of 22 children and though his parents were urged to place him in a convalescent hospital, they decided to raise him at home (a rare choice for parents in those days). He had debilitating spasticity throughout his body but was able to use his left foot which he relied upon heavily to accomplish most tasks. Despite the odds against him, he became a painter and novelist using his foot for both activities. The movie debunks many myths about the individual with cerebral palsy including the assumption that he/she is not intelligent. I found this movie uplifting, yet also painful as you watch the character struggle through the most simple tasks. But Christy’s humor, resilience, and intelligence inspires rather than leaving the audience despondent. Although the ending alludes to a happy conclusion, family reports have surfaced depicting a less than favorable picture of Christy’s marriage to Mary Carr.
Lives Worth Living: A wonderful documentary of the ADA that aired on public television.
Dan Keplinger subject of King Gimp on “NPR”:
“Dan Keplinger was born with severe cerebral palsy. But at 30, he’s already a successful artist, the subject of an Oscar-winning film called King Gimp, and he’s finishing his second college degree. NPR’s Neda Ulaby visited Keplinger at his home near Baltimore, Md., and reports that the artist continues to gain critical acclaim — and continues to challenge the limits his disability puts on his own body”. Excerpt taken from NPR and is by Neda Ulaby.