Material and Information for Children's Resources
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.
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.