Some additional resources that may be helpful:
ALS Youth Education - Based on subject-matter research, three youth education books were developed for children, teens, and young adults. These books follow the same structure as the family guide (i.e. addressing what is ALS, caregiving, family and friends, and end of life). Yet, each book is presented to target a specific youth developmental stage. These books are available in print and digital form.
ALS Activity Book - Helping Children Understand the Puzzle of ALS (originally put together by the St. Louis Chapter and may contain some regional information): This hands-on-tool is a resource for professionals working with children affected by ALS. It is also designed for families to use together to help children and grandchildren understand the effects of ALS.
KidsHealth.org - A website full of helpful information about ALS and how to help your child better understand what is happening.
My Poppo - An illustrated children's book series about coming to terms with a terminally ill relative.
Hope Loves Company - The mission of Hope Loves Company is to provide emotional and educational support to children and young adults who have family members battling ALS.
Loss and Grief Manual - This educational book is specifically designed to help someone cope with the grief and loss that comes with ALS. It has sections for people living with ALS, their loved ones and children of varying ages. (Originally put together by the St. Louis Chapter and may contain regional information.)
National Alliance for Grieving Children - Promotes awareness of the needs of children and teens grieving a loss and provides education and resources for anyone who wants to support them.