No matter their age, all children need someone willing to listen who can answer their questions openly in a way that is age appropriate. There is no right or wrong way for children to cope, and it's important to let them express everything they need to.
When this discussion is avoided, parents may not realize that this conveys the wrong notions that ALS is an embarrassing or shameful disease that fosters anxiety and should be feared.
It's important to be open with children and to remember that they are always learning and growing and that their questions will change as they get older. Most children need to be reminded that it's okay to ask questions and that you are always available to discuss any issues or concerns they might have.
It is also extremely important to be open and honest. Children know when a parent or someone close to them is not telling the truth or is anxious, and some children may stop listening. Let them know that ALS is difficult to understand, and that you will be there to help them. Remind children that no one is at fault; it is not a punishment. You never know who will develop ALS and it is not contagious. ALS affects everyone differently, and there is no way to predict what the future holds. Remind them that they will always be taken care of.
Read our full article, which contains very helpful tips, suggestions, and resources here.
How have you discussed ALS with your children? Please share your experiences so that others in the community may learn to do the same with their own families.
If you or someone you care about would like to talk more about how to discuss ALS with youth, please contact us at: [email protected]
UNTIL THERE'S A CURE, THERE'S ALS WORLDWIDE.