Children's Resources

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.

Below are links to pages full of information that can help you. 

Materials and Information: Here you will find documents and internet links to help you have those tough conversations. 

Resources: Here you will find names of local child therapists as well as scholarships for children of families living with ALS. 

Please contact our chapter’s Care Services team at careservices@alsa-or.org or 503-238-5559 ext 100. We are here to help and can provide additional information and advice as needed. We are here to help every step of the way.