Support and Resources for Children

Coping with a loved one's diagnosis of ALS is never easy, but it is especially hard for children and young adults. When a parent or grandparent has any disease, one of the hardest things to do is discuss the illness, progression, and emotions with young ones.

Should children and adolescents in ALS families be told about the illness? The answer is a resounding, "Yes!"

There are many important reasons why children should not only be informed of the illness but also be included in all phases from the diagnosis on. The question before us now is, "How in the world do we even begin to talk with our children and adolescents about the ALS diagnosis and its prognosis?"

First recognize that discussions about ALS will vary according to the age of your children. Perhaps more important than what you say and how you say it is the fact that you are spending special time with your child and listening to his or her questions and concerns. Providing facts slowly will give your child time to digest information and return later with more questions. These are tough questions, but need to be addressed for the emotional health of the child and family.

All families are unique and each has its own customs and patterns of communication. Yet, there are some basic principles that apply to families with children of all ages. Also, each child is different. Use what you know about YOUR child to determine how they will hear and process what you are telling them.

Youth Education & Support Materials

Youth Support Resources

The Dougy Center

The Dougy Center provides grief support in a safe place where children, teens, young adults, and their families can share their experiences before and after a death. They provide support and training locally, nationally, and internationally to individuals and organizations seeking to assist children who are grieving.

For support in finding local youth counseling resources, please contact our chapter’s Care Services team at or 503-238-5559 ext 100. We are here to help every step of the way and can provide additional information and advice as needed.