Hydrocephalus Canada

Resource Library

Print PagePrint PageSend by emailSend by email

Our resources have been organized in the following categories:

To borrow any of these resources please contact us at 800-387-1575 or by email at provincial@sbhao.on.ca

Kids Resources

Books on Hydrocephalus:

Benny the Bear with Hydrocephalus Series:
Benny Gets Better - Benny the bear finds out he has hydrocephalus and needs to have a shunt operation.
Benny’s New Shunt - Benny’s shunt stops working and he goes to the hospital. The doctors fix his shunt and he goes home to get better.
Benny Goes to School - Benny is starting a new school and he helps the kids in his class understand what hydrocephalus is all about.
Benny Goes on Holiday - Benny and his family go on vacation

All About Me (and my shunt) - Easy for kids to understand what hydrocephalus is and what a shunt is.

Detour Ahead - This storybook follows Timmy, a young boy with hydrocephalus who falls ill. His parents take him to the doctor, where he has tests that determine his shunt isn’t working properly and he needs surgery. Through this experience Timmy learns and understands his condition and how the shunt helps his body by acting just like a detour. This charming book will help parents and children recognize the signs of shunt malfunction and help ease fears about shunt surgery.

My Brain Won’t Float Away - Annie, an 8 year old living with hydrocephalus lets the reader get a glimpse of her fears, self-discovery and triumphs. Written with humor, honesty and compassion for children ages 6-10.

Just Like Any Other Little Beagle - Follows Barney Beagle, who has hydrocephalus, and his family through a routine office visit with the neurosurgeon. Hydrocephalus is explained in an easy-to-understand way, with diagrams and pictures.

Books on Spina Bifida:

Right Under My Nose-A Book for Children with Spina Bifida -Demonstrates a young child with spina bifida and hydrocephalus (sb/h) leading a full life with dreams, challenges and independence. Promotes self-advocacy in children with disabilities and is designed to help youngsters with sb/h understand their condition and discover new ways to enrich their lives. Addresses challenges children may have including their movement, bathroom routines, exercise needs, diets and scars. The tip and activity pages offer child-friendly answers to frequently asked questions and will open and guide discussion about spina bifida and hydrocephalus. These pages will help your child ask questions they may be afraid to ask, gain understanding and hope and realize they are not alone. An excellent resource for you, your family and your child with sb/h.

Another Way to Go for Boys and Girld - When Timmy and Becky go to school and use the bathroom they sees that the other boys and girls don’t use a catheter like they do. They both wonder why they are  different. Timmy and Becky ask their moms why and each child's parent helps them learn that they are just like the other boys and girls in many ways and that using a catheter is just another way to go.

Medical Facts About Spina Bifida - Kids picture book that is easy to read about spina bifida and hydrocephalus.

Millie & Russell Series:
Swimming Success -Millie and Russell are young people living with spina bifida and hydrocephalus. Like many young people living with these conditions, they deal with bowel incontinence issues. In this booklet Millie and Russell take the reader on a learning journey through the ups and downs of managing a bowel that doesn’t work properly.
Goes to Camp -Millie and Russell are young people living with spina bifida and hydrocephalus. Like many young people living with these conditions, they deal with bladder incontinence issues. In this booklet Millie and Russell take the reader on a learning journey through the ups and downs of managing a bladder that doesn’t work properly.

Disability Related Books

Don’t Call Me Special-A First Look at Disability -A picture book that explores questions and concerns about disability in a simple and reassuring way. Younger children can find out what a disability is and learn how people deal with their disabilities to live happy and full lives.

A Very Special Critter – About a kid who is starting a new school and uses a wheelchair. The other kids learn he is capable of doing most things for himself and some things he needs help with from his new friends.

Rolling Along With Goldilocks and the Three Bears - A story about someone living with a disability, their friends and acceptance.

Lee the Rabbit with Epilepsy – Makes epilepsy easily clear for kids, siblings and friends.

Patrick and Emma Lou – About two kids who share their experiences living with a disability. Patrick uses a walker and is having a hard time getting use to walking with it. His friend, Emma Lou who uses a wheelchair and has spina bifida helps him adjust and learn something about himself.

Nick Joins In -About a young boy who uses wheelchair. Tells how a little boy manages in his new classroom and makes new friends. Nick also shares his fears and concerns surrounding this new experience and the other children’s reaction to this new situation

Invincible - Tired of her parents’ overly protective rules, Princess Lena decides to disobey the King and Queen’s command to stay behind the gates of the royal palace. Ten years of seclusion has been long enough. A new world beckons outside the high walls of the castle grounds. Now, her identical twin, Meg, must decided whether to share Lena’s journey to a new life. Readers will want to befriend Lena and Meg. They are clever mystery solvers and compassionate adventurers and they are leaders who model how we can truly embrace and learn from one another, regardless of physical capacity or appearance.

Youth Resources

Miranda and Friends -On a visit with her grandmother, Miranda makes a new friend of the boy next door. The boy has spina bifida, uses crutches and a wheelchair. Together they search for a miser's treasure.

Featherless - This bilingual (English/Spanish) book about a boy with spina bifida and his pet bird is a sparkling story of self-empowerment and friendship. The boy, Tomasito often feels confined to his wheelchair and as flightless and featherless as his pet bird. He soon discovers that he can feel free when he is on the soccer field.

Disabilties, Dragons and Other Magical Discoveries, A Kid’s Guide to Understanding and Living with Disabilties - For and about young people with disabilities. Designed to help you understand your condition, what it means, what you need to know about your health, medical care, social interaction and the future.

Stick Up For Yourself! Every Kid’s Guide to Personal Power and Positive Self-Esteem - For any kid who’s ever been picked on, bossed around or treated unfairly and for any kid who sometimes feels frustrated, angry or scared. Uses simple words and real-life experiences to teach assertiveness, responsibility, relationship skills, choice making, problem solving, goal setting, anger management, self-esteem and more.

Growing Up Feeling Good; A Growing Up Handbook Especially for Kids -For pre-teens and teens that promotes good, positive messages and great tips for communicating how you feel. Discusses how to relate to friends, how to feel more confident, teenage sexuality and sexual decision making. Offers ways to deal with the many changes, frustrations, pressures, decisions and day to day experiences that are part of growing up.

A Young Person’s Guide to Living with an Ostomy -Written to help young people understand and cope with their ostomy. Explores pouching systems, skin care, food, clothing, being active, traveling, self-image, dealing with relationships and family.

Kids on Wheels-A Young Person’s Guide to Wheelchair Lifestyle –Kids’ Volume -About kids on wheels living a full life. A life full of fun, friends, family, sports and recreation, fun and games, art, books, school, making friends and fitting in, family, service animals and famous people who use wheelchairs. Also has stories from kids with disabilities, many who have spina bifida.

I’m Wendy Blair, Not a Chair! - Provides a positive message about persons with disabilities for young readers.

The Jordan Series -Series of books for young readers about an independent 11-year-old who uses a wheelchair.
Making Friends with Jordan - Warren, an active, sports-minded boy learns how to include Jordan in a game of basketball.
King Jordan - Jordan's career as an actor is short-lived until friends and neighbours team up with the school to solve the problem.
Harvest Window - Jordan has difficulty coping with his own biases toward other peoples' differences. He and Warren begin to understand the meaning of acceptance.
What He Can't Do - Warren wants to learn to swim, but is afraid of the water. Jordan, who enjoys a sense of freedom in the water, helps him get started.
Some People Can't See - Why can't some adults understand how children feel? A visit to Jordan's self-help group gives insights into the frustrations of limited physical abilities.

TM 3000: The Maiden Voyage -An intriguing, action-packed novel featuring Alice and Sarah, who are twins. Sarah has a disability and uses a wheelchair. When her eccentric doctor gives her a new chair, the sisters are in for a surprise. They soon find themselves on the adventure of a lifetime. For children ages 7-11.

Best Friend on Wheels - About two young girls, who become best friends. They do everything together, from rock collecting, dancing, sleepovers, movies, scrapbooking, and going to the mall. They are two peas in a pod, accept one of them walks and one rolls.

Young Adults

Spinabilities; A Young Person's Guide to Spina Bifida -For teenagers and young adults with spina bifida. Has practical hints and suggestions on topics such as health care, relationships, sexuality, employment, fitness, school and the future.

Maya - Based on a character from the Degrassi High tv show who has spina bifida. 16 year old Maya and her best friend plan out a summer which includes getting jobs, getting their license and getting boyfriends. However it’s all not quite what she bargained for.

Caution: Do Not Open Until Puberty! An Introduction to Sexuality for Young Adults with Disabilities -An open discussion about puberty and sexuality for adolescents living with a disability. The young people talk about themselves, their diagnosis, long term health and their own bodies.

Fighting Invisible Tigers, A Stress Management Guide for Teens -For teens feeling overwhelmed, frustrated, inadequate, tired or stressed out by the challenges of their lives. Let’s you know you are not alone, and other young people feel the same way. Learn what to do and how to cope with stress. Learn how to be assertive, build relationships, and use positive self-talk for life management.

The Survival Guide for Teenagers with Learning Differences -Handbook of school and life skills for teenagers with learning differences. Asks the reader to identify themselves, discuss how to self advocate, continue your education and plan for the future. Strategies include how to become independent, make and keep friends, find and keep a job and how to be the best that you can be.

The Road Ahead: Transition to Adult Life for Persons with Disabilities - A powerful, well-written resource for individuals with a disabilities, their families and those who assist them with transition from school to work, to other environments, to a quality adult life. It explores transition planning, assessment, instructional strategies, career development, adult employment, community functioning skills, social life, quality of life, supported living and post-secondary education. Although this is American based, much of the information can be used for Canadians.

Transition-A Guide for Young People with Spina Bifida and Hydrocephalus -Looks at the transition planning process being in grade 9 and how spina bifida and hydrocephalus might affect the transition from education to employment. Discusses how to set up a transition action plan, issues and questions, personal experiences and available options. A two book series on transition to adulthood for those with spina bifida and hydrocephalus.

Below the Belt Teen Talk: Continence, Relationships and much more - When you are approaching your teenage years the transition for childhood to adolescence is enjoyable, but it can be stressful, especially if you are living with a health condition like spina bifida and/or hydrocephalus. This booklet covers topics such as taking control of continence issues, hygiene, relationships and sex which should stimulate further questions and encourage youth to talk about issues with parents, caregivers or health care providers that they may not feel comfortable raising on their own.

The 411 on Disability Disclosure-A Workbook for Youth with Disabilities -Workbook provides the expertise about disclosing a disability. It does not tell you what to do, rather, it helps you make informed decisions about when, how, to who and if you should inform people depending on the situation or setting and the need for accommodations. Each unit contains a general statement of purpose, useful terminology, a discussion section and activities to allow the user to understand and practice the ideas presented throughout the unit.


Views From Our Shoes, Growing Up with a Brother or Sister with Special Needs -Sibling share and compare their personal experiences about having a brother or sister with special needs. Essays provide insight into their emotional experiences.

I'm Somebody Too -A novel for brothers and sisters of children with special needs.
Talks about emotions, fear, anger and feelings of being left out and alone. For kids age 8-12.

My Brother, Matthew -Looks at the effects a child with a disability has on family from the siblings point of view. Conveys a sibling’s feelings of loneliness, rejection and impatience in a compassionate tale.

It Isn't Fair! Siblings of Children with Disabilities -Reveals first-hand feelings of brothers and sisters of siblings with disabilities. They share their experiences at all stages as they struggle with care taking, frustration, powerlessness, jealousy, guilt and worry about their special siblings.

He’s My Brother -Day-to-day life of a little boy with a disability as seen through the eyes of his brother. School, family life, and teasing are all touched on in this simple book.


Just Like Me? Children Talk About Spina Bifida" - Conversations between kids with spina bifida and their able-bodied classmates. Children ask questions and express their feelings about having a child with a disability in their class.

Teens on the Move: An Exercise Video for Teens with Spina Bifida - Features 18 minutes of aerobics, 16 minutes of flexibility and 26 minutes of strength training for teens with spina bifida. Warm-up and cool-down exercises are also included.

Just Like Any Other Little Beagle - Follows Barney Beagle, who has hydrocephalus, and his family through a routine office visit with the neurosurgeon. Hydrocephalus is explained in an easy-to-understand way, with diagrams and pictures.



Seat-A-Robics Just 4 Kids - An easy to follow, easy to perform aerobic workout for children 10 years and older.

Kids Like Me - Shows children using wheelchairs in full inclusion settings like the classrooms and playgrounds. Children explain why they use chairs and how they work. Children without disabilities ask questions and address some of their feelings.

Miracle in Lane 2 - Actor Frankie Muniz stars as Justin Yoder a 12 year old living with spina bifida and hydrocephalus. Justin refuses to let his physical challenges interfer with his desire to win a trophy. Justin discovers that it’s perseverance that makes a winner as he prepares for a national soapbox race. Movie also addresses family issues that can arise when one child has a disability. A fun, fresh, full of action and heart story that combines courage, challenges and thrills for a ride of a lifetime.

Other Resources

Youth2Youth.ca - A website developed by young people with learning disabilities.  Provides information and answers on how to get to high school to post-secondary and beyond and what supports are needed during the journey to be successful.  Visit the Video Room and New Additions area, so that you're up to date on new stuff.  Visit the Market Place to find out about the latest adaptive technologies, books or videos that may help you on your journey.

Looking for a job? Visit the  Job Centre for job postings or the Employer and Workplace Section to learn more about best practices on hiring and keeping LD employees.

D.O.O.R. 2 Adulthood - A Disability Ontario Online Resource aimed to improve the process of transition to adulthood for youth with disabilities and their families. Providing information about services, resources and events related to transition, and the opportunity to network and share ideas.

Life Stage Transitions Project - The Easter Seal Society and Ontario March of Dimes are working jointly on this project to help adolescents move into adult services. If you have a physical disability and are between the ages of 16-29 and need assistance with employment, education, independent living and social issues or recreation opportunities contact their Service Navigator to discuss strategies and options.

For more information please click here for flyer. or contact Antonia Hammer at 416-425-3463 ext. 7209 or email ahammer@marchofdimes.ca

Spina Bifida Camp Freedom - Are you a youth living with spina bifida between the ages of 12-18? Do you like to have fun and hang? Then you don’t want to miss Camp Freedom this summer! Activities include swimming, crafts, basketball, dance, wall climbing and wheelchair accessible low ropes course, games, canoes and paddle boats, campfire and mini golf.

Date: July 10-13, 2008
Location: Camp HeHoHa on Lake Isle, one hour west of Edmonton, AB

For more information and registration forms visit Camp Freedom.

Youth Advisory Committee (YAC) Meetings-Hamilton - Come share your ideas for upcoming events and community projects. The committee meets the 1st Friday of each month from 5-7pm. Bring $2.00 for pizza and pop. For information please contact 905-521-2100 for Denise McArthur at ext. 74482 or Karen Margallo at ext. 77760.

Sibling Support Group - Support group offered through Precious Minds gives siblings a chance to talk things over and express feelings and opinions, worries and difficulties when one of their siblings has special needs. Lets siblings know that they are special too and acknowledged in their own right. Gives them the opportunity to meet other children in similar situations, providing them with new ways of coping. Two age groups: 8-11 and 12-14. 
For additional information on these sessions or to register, please contact Precious Minds at 905-982-0882 or visit www.preciousminds.com.






University of Toronto's Adaptive Technology Resource Centre - An online community providing resources, courses (free and fee-based) for special educators, educational assistants, parents, people with disabilities, technologists, and others interested in special education, inclusion, and accessible technologies.

I-TUTOR-Free Student Networking Resource - Tutors can assist elementary, secondary, college and university students. This model was created to help network, empower and provide students with a resource without middle-person costs.

Bloorview Kids Rehab Therapeutic Recreation & Life Skills Program - Under Bloorview's Life Skills and Wellness Institute, the Therapeutic Recreation and Life Skills program provides a variety of recreation, life skills and community development programs and services responsive to the needs of children and youth with physical disabilities. The programs focus on life skills, transition and quality of life activities related to health, fitness and active living. 

Birchmount Bluffs Neighbourhood Centre Able Programs for Youth with Disabilities-Scarborough, ON - If you are a person with a disability aged 15-30 there are many opportunities to get involved in Active and Able programs at the Birchmount Bluffs Neighbourhood Centre. Find out about volunteering opportunities. Learn how to use the accessible features on TTC vehicles, get info on staying safe on the TTC, and learn a route that you travel frequently on Wheeltrans.

Have some ideas to contribute to program planning for youth with disabilities?  Come on out to the Youth Advisory Council meetings and enjoy a meal while you help direct us in programming for youth. Learn new skills, make new friends, and make a difference. Have a problem that you are struggling with? Need some help with goal planning, life-skills development, or problem relationships? Get some one-on-one help to make changes to your life-plan. Our peer support specialists can help you to set some goals, develop new skills and improve your relationships.

Come and meet friends new and old at their Social Nights and enjoy a great home-cooked meal and join in with our discussion groups, watch a movie, or just hang with us. For more information on any of the programs contact Judith at 416-396-7606 or email Judith@bbnc.ca.

Scarborough Centre for Employment Accessibility (SCEA) Workshops - A project operated by the Toronto District School Board in Scarborough and is funded by the Government of Canada. As part of their services they provide Employment Assistance for persons with disabilities.  Each month they have information session ranging from Employment Accessibility Exchange, Interviewing and Communicating, Employment Counselling, ODSP Employment Supports, Job Fairs and much more.

Talking with You're Doctor and Other Health Care Professionals-Tips for Youth - This 18 minute video is designed to teach adolescents and young adults (AYAs) how to communicate more effectively with health care providers so that professionals understand AYAs concerns, answer AYAs' questions and give information and supports AYAs need to be more in charge of their own health. The video also shows AYAs how to prepare and give health care providers the information they need to give teens the best possible medical care. This video was developed by John Reiss and Randy Miller at the Institute for Child Health Policy through a contract with Florida's Children's Medical Services Program.