I made these 'learning posts' in June for Spina Bifida Awareness month, but thought I'd make a stand-alone blog so that if anyone is interested, all of the information is here. And I can add as I learn more about spina bifida as well!

Spina Bifida is the most common birth defect in North America. My son Nickolas was born November 13, 2009 with spina bifida and I have chronicalled our journey here, in my personal blog.

I hope you enjoy and learn something!

The information from this blog has been collected by myself to share what I have learned. It should in no way replace medical recommendations or consultation. This is for educational and information purposes only.

Start by picking a topic below:

Thursday, March 9, 2017

Children's Books

I enjoy finding new books. Not necessarily about spina bifida, but books to help normalize the experience of spina bifida/hydrocephalus and/or disability in general. I have collected multiple books over the years and have looked for recommendations.

Here is a collection of books I have found. Some of them we have, but not all of them.
I haven't included any links to specific companies (for example amazon) unless I have found them for free or ONLY at that link. Between the title, the picture and the author you should be able to find these books at your local book vendor (whoever you use).

Books About Spina Bifida

Right Under My Nose

Marlene Lutkenhoff is a nurse who has written a number of books about spina bifida, with Becky or Timmy to help to explain some of the medical aspects of spina bifida

Another Way to Go
  • By Marlene Lutkenhoff, 2012
  • 2 different books about Becky or Timmy on their first day of school. To help to learn about cathing
Detour Ahead
  • By Marlene Lutkenhoff, 2012
  •   Timmy (from Another Way to Go) gets sick and finds out that his shunt isn’t working

Isaac’s Back Adventure
  • By Christine Nadeau, 2010
  • About the adventure’s Isaac’s special back went on, Isaac's back goes everywhere with him. But it also has to fight and be strong 
  • Specifically about lipomeningocele
I really like this one, even if it is about a lipomeningocele (where the operation to fix the back is done at a later age) it is still applicable

Katie McComis has written 3 books about spina bifida. I haven't read them, but now they are on my to-read list

The Spina Bifida Potty Book
  • By Katie McComis
  • Written for toddlers and young children to understand why catheters and enemas are important
I have spina bifida
  • By Katie McComis, 2015
  • Geared to educate young children about spina bifida and normalize their condition
The Princess And The Kitten
  • By Katie McComis and Evvie Marin, 2014
  • About a little girl living with spina bifida and a kitten born with spina bifida too

Blueberry Lu: A story of a feisty little redhead with spina bifida
  • By Lisa Goff, 2015
  • About a girl who loves blueberries and what happens when she eats cold berries
  • I haven't read this books, but it looks like an adventure

SHINE Charity in the UK created a serious of books about Benny, who has hydrocephalus and Bella, who has spina bifida

Benny the Bear books
Bella the Bear books

Sharon Ennis is a mother to a child just a year old than Nickolas, who I have met (both of them actually). She has written 2 books. One called Gabby's Gift (about her experience after Gabby is born with spina bifida) and another a children's book.

My Silly feet
  • By Sharon Ennis
  • about a little girl who wants to race, but she has 'silly feet' and is afraid people will laugh at her. Then she reads about Terry Fox and wants to be brave like him.
  • Available from itunes or http://facesofspinabifida.com/articles/my-silly-feet-childrens-book - I tried the link on the page and the online ordering is not available, I am not sure if it is still in print?
  • If it isn't available in print I would be very upset, Nick has brought this book to school multiple times

Mr Fancy Pants: The story of Munster
  • By Neal Wooten, 2015
  • About an English Bulldog who was born with spina bifida
  • This is another book I haven't read, but is a true story about Munster, who is apparently a facebook sensation

Katie CAN do.. and you CAN too

  • By Katie and Sarah Hull, 2013
  • Katie wrote about all of the exciting stuff she can do
  • I know Katie's mom through facebook and her blog! She has a video about why she wrote this book here.

My first day of 6th Grade
  • By Elijah Walker, 2013
  • Another book written by a child-author with spina bifida
  • Born with spina bifida and hydrocephalus, Elijah's story is about his first day in 6th grade (middle school)
  • I haven't read this, but I think it would be interesting when Nick is closer to 6th grade.

Books about Disability (not specific to Spina Bifida)

I don't always want books about spina bifida, or really about disability specifically. It helps kids to learn that spina bifida and a disability is not a whole child's story, but a part of it.

What can you do?
  • By Kevin Arnold Haring, 2010
  • A young girl tries to make a new friend and talks about all the ways they can play together

Susan Laughs
  • By Jeanne Willis and Tony Ross, 2000
  • Susan is just like everyone else. On the last page you see she uses a wheelchair

Daniel’s New Friend
  • By Becky Friedman, 2015
  • A Daniel Tiger book. Daniel Tiger meets a new friend and notices that she wears braces on her legs to help her walk
  • There is a cartoon episode of this book as well

The Adventures about Wally the Wheelchair
  • By Marty Martman, 2013,2015
  • There are 2 in the series (which I hadn't realized, I've only read the first one): A New beginning, Wally goes to school
  • About a child’s wheelchair, from the perspective of the wheelchair.
  • Wally doesn't understand why his maker made him a wheelchair... until he meets a little boy who helps him see his real purpose
  • It's a fun book from a different perspective (it did have me tear up a little though)
  • Free from KindleUnlimited

  • By Robert Munsch and Michael Martchenko, 2003
  • About a girl who is trying out different wheelchairs and wants the fastest and biggest one there is!
  • A fun book in typical Robert Munsch style

Lemon the Duck

  • By Laura Backman and Laurence Cleyet-Merie, 2009
  • About a duckling that needs some extra help to move around, and a group of students who work together to make that happen.
  • Another true story
  • You can visit the website but also on facebook and youtube.
  • Resources for teachers, and an address to send pictures and letters

Dancing Wheels
  • By Patrician McMahon, 2000
  • Backstage with the Dancing Wheels dance company, following a ‘sit-down’ and a ‘stand-up’ dancer
  • It's a little old (2000) and I haven't read it, but for anyone dreaming of being a dancer and want some real-life inspiration it looks like it would be good

Marco and I want to Play Ball
  • By Jo Meserve Mach and Vera Lynne Stroup-Rentier, 2015
  • A story about 2 cousins who want to play baseball
  • based on a true story
  • Who is going to hit the ball farther, higher?
  • I haven't read this book, but the back talks about a story of inclusion and self-determination

All Kinds of Friends, Even Green
  • By Ellen Senisi, 2002
  • The book is written with photographs
  • Writing about someone just like him, a boy writes about an iguana who needs to find different ways to move around
  • Animals can have special needs too

Where do I hide my Hippopotamus?
  • By Kevin Haring, 2010
  • There is an adventurer in all of us
  • Where would you hide a hippopotamus you found on the way to school?

Featherless: Desplumado
  • By Juan Felipe Herrera, 2013
  • Tomasito starts a new school and everyone on the soccer fields wants to know why he is in a wheelchair. His father gives him a little birth that is different from the rest

Some longer books for older kids

I haven't read any of these longer books yet. But they look good as Nick starts getting older

Dragon Dreams

  • By Linda Stalvey, 2016
  • About best friends and a magical adventure to play in a treehouse with a friend in a wheelchair
  • This is another one that I haven't read, but it looks good.
  • 79 pages 
Anna Brown and the Missing Uniforms
  • By Annie Donahue, 2015
  • 11 year old Anna needs to find the missing wheelchair basketball uniforms, or her team will forget. A book about a mystery and problem solving
  • 84 pages
  • Free on KindleUnlimited

Jimmy Wheelz and the Minilights
  • By Tony Vanga, 2014
  • Jimmy just started school and became sick due to spina bifida, when he is admitted to the hospital he finds a light inside himself with magical creatures
  • 82 pages
  • Free on KindleUnlimited

Inspiring… not about disability
I know there are more books that are like this, but these are the ones that I have read and enjoyed 

The Dot
  • By Peter H. Reynolds, 2003
  • Not specifically about disability. About a little girl who says that she can't draw. When she makes a dot, and signs it she finds that she really can.

Giraffes Can’t Dance
  • By Giles Andreae and Guy Parker-Rees, 2012
  • About a giraffe who sees everyone else in the jungle dancing, but doesn't think he can because he will look funny.
  • This is a bestseller, and one of my favorites

Puckster Books

  • By Lorna Schultz Nicholson and Kelly Findley, 2011-2014
  • A series of books about Puckster and his hockey team. One of the players  plays in a sledge.
  • Now that the kids are loving hockey, I think we will pull out these books again


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  2. I have to order some for our family. I hope our daughter reads it and understands SB better. I plan on using the books as a discussion starter with the children. Are there any other books that might be suitable?

  3. These books are what I was looking for. I want a book that can actually be used for healthy discussions about SB. How much does it cost to buy? Been looking online for SB specific resources to no avail unfortunately. Hopefully the books will equip me to handle any questions that might come up suddenly as well. If you have any recommendations for a 2yo girl I would be very interested to know more.