Talking to Kids About ALS

Find out the best ways to approach children about ALS and how to answer commonly asked questions.

When a loved one has been diagnosed with ALS, it is often difficult to explain this to children who are very close to that person. Some people even ask if they should tell children at all — the answer to this is YES! These are the basic principles to guide parents in breaking the news:

• It is very important to be open and HONEST. Truth is always the best policy.
• The information presented should be AGE APPROPRIATE and in terms the child can understand.
• Information is best absorbed in SMALL DOSES. If you listen carefully a child will let you know when they have heard enough, and will ask questions when they would like to know more.
• Make sure you talk in a CALM and COMFORTABLE manner. You may want to practice role-playing with a friend or a physician. A support group is also a great outlet for resources and practice.

This information was adapted from www.alsindependence.com.

Questions Commonly Asked by Kids

What is ALS?

Every day we use our muscles to do daily activities — to walk, to talk, to brush your hair and to eat. But in order for muscles to work, they have to be told what to do and receive messages from the brain. These messages are carried by nerves — kind of like wires that make lights work in your house.

So if you want to walk down the stairs at your house, your brain sends a message through nerves to your muscles to make you walk. This happens very quickly — you never feel the message being sent through your nerves.

When someone has ALS, something goes wrong with these nerves and they cannot carry the messages. Since they can't send the messages to your muscles, the muscles cannot move.

What does ALS do to you?

When someone has ALS it makes it very difficult for him or her to move, to talk, to eat and even to breathe. ALS only attack the nerves, not the brain, so people can still see, hear, taste, smell and feel. A person living with ALS knows everything that is going on.

Who is Lou Gehrig?

Lou Gehrig was a famous baseball player who played for the New York Yankees in the 1930s. When he was in his 30s he was diagnosed with ALS. He was really the first famous person known to have this disease, so it became known as "Lou Gehrig's disease." Lou Gehrig is also in the National Baseball Hall of Fame.

Why do people get ALS?

We don't know why people get ALS, but we are working really hard to find out. Scientists all over the world are doing research to answer all of our questions about why and how people get ALS.  We do know that you cannot catch ALS from another person.

Do kids get it?

Kids do not get ALS. It mainly occurs in adults who are between 50 and 70 years old. There is a form of juvenile ALS, but it is extremely rare. 

Will I get it?

In most cases, we are pretty sure that you won't. There is a rare type of ALS where more than one person in a family has ALS. Doctors are working really hard to try to find out why this happens. 

Do people die?

Sadly, people living with ALS do not get better and sometimes do pass away. There is really no way of telling how long someone can live with ALS. It may be less than 2 years or more than 30 years. There is really no way of knowing.

What can I do?

If someone you know and love has ALS, the best thing you can do is to be there for him or her and help that person when he or she needs it. If you want to get involved in another way, you can always help raise awareness or raise money for research and patients services.

When someone special to you has ALS, it is okay to feel sad. If you need to talk to someone that is always good, too. This may be a teacher, a school counselor or a family member. But always remember — be yourself!

For additional sources for talking to kids, contact the Chapter at 877-568-4347.

These sources came from Sharon Rugg. Sharon Rugg is currently the Family and Children's Counselor for ALSA of GA and author of Kid's Korner. A licensed clinical social worker and certified grief therapist with over 20 years of professional experience, she is the author of books and games for grieving children. She specializes in counseling with children and adults on issues of loss and bereavement and also enjoys providing workshops on grief and loss. To contact Sharon about materials, counseling, or workshops, she can be reached at SharonRugg@aol.com or (770) 928-1027.