Material and Information for Children's Resources

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Supporting Children of a Parent living with ALS Booklet

Tips for Supporting Students Who Have a Family Member Living with ALS Booklet

Children's ALS Activity Book - This book provides educational and developmental guidelines to explain ALS to children. It also implements hands-on activities, games, and learning pages for children, presented in age-appropriate language and content that help them understand ALS, recognize and process feelings, and provides ideas and tools for how to help themselves, their family, and their community.  Parts of this book may be appropriate for school aged children while others might work better for your teenager. You are the expert on your child. Please review this helpful guide to decide what is best for your child. Please download the ALS Activity Book here. 

Grief Development Stage Chart. This chart provides age appropriate developmental descriptions of how children perceive and process grief.  While we often consider grief to be a reaction to death, it can also be an emotion that we feel as we encounter the many losses that ALS brings along the way. Please download the Grief Development Stage Chart here.

Useful Websites:

This Canadian website offers detailed ALS informational guides for parents, children, teens and educators. Please click here.

This website features an interactive site for youth and teens to learn more about ALS, play games, hear stories about how ALS has impacted other youth’s lives. Please click here. 

This is a powerpoint presentation by board certified chaplain Sedona Montelongo addresses common concerns about discussing terminal illness with children and age appropriate conversations and concerns. Please click here. 

This British website features videos of families sharing their experiences in telling others, including young children, employers, family and friends, about their Motor Neurone Disease (another name for ALS in different locations around the world, including Great Britain). Please click here. 

This website sells the Poppo book series which highlights a man’s journey with ALS through his granddaughter’s eyes.  Books highlight living with ALS as well as the grief of losing a loved one. Stories and books are a great way for young children (both pre-school and school aged children) to relate to a particular experience or emotion they might be having. Please click here. 

Some people with ALS also experience  frontotemporal degeneration (FTD). The Association for Frototemporal Degeneration offers a website specifically for children and teens providing information about FTD, what to expect,  stories about how FTD has impacted other youth’s lives, activities, and more. Please click here.