Hydrocephalus Canada

Parent Support

Print PagePrint PageSend by emailSend by email

Personal Support

You can contact SB&H, you will receive personal support, guidance and educational materials to help you through the daily challenges of parenting a child living with spina bifida and/or hydrocephalus. We are your source for comfort and understanding, providing emotional support and information. Our staff and volunteers are empathetic, sharing your experiences.

Having difficulty getting what you need?

SB&H can help! When issues arise related to health care, education/school supports, transportation, recreation, funding, etc. We are here to support you through the process, whether by acting on your behalf or giving you the necessary tools to proceed on your own.

Parent Connections - linking program

Through our Linking Program SB&H facilitates one-to-one support for the parent or guardian of a child living with spina bifida and/or hydrocephalus, to parents with similar experiences to share coping strategies. SB&H can connect you with parent volunteers who are are available to listen and support you. They have experienced similar emotions to what you may now be feeling. Talking to someone could be the missing link in your search for creative solutions. It is helpful to know that other families have faced similar circumstances and learned to cope. A link can also provide important social contacts or simply someone to listen.

It's easy to get linked. Get connected... Join our Linking Program! For more information please contact SB&H at 800-387-1575 or email provincial@sbhao.on.ca                                                 Top of page

Stories from Parents

Writing the story of your struggles with having a child who has spina bifida and/or hydrocephalus can really help. The exercise of writing it all down can make it easier to cope - sharing the burden and getting your feelings and fears off your chest. You are also helping others in similar situations feel less alone and afraid.

Raising a Child with Spina Bifida by Sharon Ennis

When a woman is pregnant, what is her number one wish during pregnancy? To have a healthy baby with 10 little fingers and 10 little toes.

Well this is where my story begins—with the birth of our third child—daughter Gabrielle. Raising children in this world is not easy. I have come to learn that being a parent is much more than becoming one. Parenthood is a journey not only a destination. Read more...


Online Discussion Forum

Online peer support is available through the SB&H website.  This is your opportunity to connect with other adults from around the globe.  The forum is an easy way to network, talk about concerns and share information in a monitored setting. 

To register for the SB&H Online Discussion Form click here.


Member Blogs & Online Groups

These blogs and groups are listed for information purposes only. SB&H does not provide or endorse their content.

Connect with parents of children living with spina bifida and/or hydrocephalus In Ontario through their blogs, Facebook groups and personal websites. If you are an SB&H member and have your own online presence contact us about adding a link to our list.

Ridding Family Blog 
About Spina Bifida Blog
The Little Kingsley Blog
Quinn's Journey
Fruck Family Blog
Ryder & Andrew's Journey
Wouda Family Blog
London Spina Bifida Group
Uplift - A Hydrocephalus Support System

                                                                                     Top of page


Parent Support Groups

Support groups are powered by the sharing of common experiences and concerns. A collective exchange were you may find answers to your individual needs. A place to find others who know what it's like, where you're not alone. This safe environment sets the stage for mutual support and encouragement, comfort, information exchange and positive feedback. This atmosphere can also provide personal growth, closer inter-personal relationships and increased self-esteem.

SB&H Parent Support Groups meet periodically as the need arises. If you are willing to share in the duties of organizing a new group, SB&H will help you get started. For information on support groups in your community contact Shauna Beaudoin, Information & Services Coordinator at 800-387-1575 ext.26 or by email sbeaudoin@sbhao.on.ca
                                                                                     Top of page


Parent Resources

Resource Centre - SB&H has hundreds of books, newsletters, video and audio tapes, fact sheets and articles available on spina bifida and hydrocephalus, as well as many other disability related topics. Topics of interest for parents include education & school related issues, child & family dynamics, lifestyles, general health, bowel and bladder issues, recreation and much more. These items are available on loan, free of charge.

For more information on our Resource Lending Library visit our Online Resource Centre

Information Packages - Looking for specific information? SB&H can provide up-to-date, comprehensive and easy to read materials on medical issues, secondary conditions, financial assistance, coping, employment, Ontario Disability Support Program and many other areas of interest for parents. Customized packages can be prepared for you on such topics as tethered cord syndrome, arnold chiari malformation and latex allergies etc. Just make a request and we will try our best to locate the materials for you.
                                                                                     Top of page


Complimentary Resources

As a member of SB&H you will receive the following complimentary publications:

  • Current Magazine - the magazine of SB&H
  • Parent Information Kit-for parents of children of spina bifida and/or hydrocephalus
  • Hydrocephalus Information Kit-for parents of children with hydrocephalus
  • Education Handbook for Parents of School Aged Children with Spina Bifida and/or Hydrocephalus
  • Students with Spina Bifida and/or Hydrocephalus: An Educator's Guide
  • Making the System Work book & video package
  • A Teacher's Guide to Hydrocephalus 

Your child will also be provided with complimentary age-appropriate educational materials.  These resources can help your child understand about living with spina bifida and/or hydrocephalus and provide strategies on how to cope with the daily challenges that can occur.

If you are not a member of SB&H, we urge you to sign up today!

                                                                                     Top of page