Telling Your Children or Grandchildren

Telling your children or grandchildren may be one of the most difficult aspects of coping with your ALS diagnosis. As parents and grandparents, we are “hard-wired” to protect and shield our children. But in bringing up healthy, resilient children, learning how to cope with the difficulties of life are essential lessons, and parents are the ideal teachers. You know their strengths and vulnerabilities better than anyone, and you’ll be there as they integrate this new information, support them when they falter, and celebrate when they succeed. Children are keenly aware of upset or changes within the family, even if they can’t express these aloud. They may notice mom was tearful at the kitchen sink, or dad yelled for an insignificant reason. They notice breaks in the routine, such as mom and dad both away from work at the same time going to doctors, they notice hushed and intense phone conversations, and they notice extra naps: and they perceive these as a parent withdrawing from them. If they are reassured that everything’s okay, while their observations are not acknowledged and explained, the result is they feel confused, frightened, and alone.

There are many resources to help you talk to your children in an age-appropriate way. You may not need to share all the information you know. We encourage you to contact the Mental Health Nurse at the ALS Association to discuss your particular situation. You may call the ALS Association, Greater Philadelphia Chapter and ask for the free “Parent Information Packet” on talking to children.

Click on the sites below for more information:

     1. Information for Parents

     2. ALS Society of Canada pamphlet for parents with ALS

     3. ALS Society of Canada site for children (school aged and teens) who have a parent with ALS


The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.