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Discussing ALS with Children

By Cynthia KnocheDiscussing ALS with children

As parents, grandparents or family caregivers, we naturally want to provide the children with a happy life and shield them from confusing, sad or painful experiences.  One of the cruel facts about ALS is the profound impact this disease will have on the entire family.

Few tasks can be more difficult or heart-wrenching than discussing the effects ALS will have on a parent or family member.  Although many children may have experienced temporary illness or even disability issues within the family, what makes a discussion about ALS particularly challenging is the progressive nature of the symptoms.

Children of almost any age are quite perceptive of changes in family dynamics.  Left without information, they may arrive at inaccurate conclusions, such as “Mom doesn’t love us anymore,” or “I must have done something to cause this.”  Make sure the child understands that he or she is in no way responsible for what is happening to their loved one.

Successful communication involves providing children with honest, age-appropriate information.  The child should know that even though ALS symptoms will progress, there are tools, equipment and healthcare providers who can help address challenges experienced by their loved one.  Lori Banker-Horner, BA, LPN Care Services Director with The ALS Association Wisconsin Chapter shares the importance of meeting the child where they are developmentally and emotionally, rather than overwhelming them with information. Banker-Horner suggests “valuable opportunities for ALS-related conversations may present themselves while engaged in other activities, such as art projects or sharing a meal.”

Reassure children they will always be cared for by someone who loves them.  For example; since Mom can no longer drive, Grandma will pick them up from school each day.  Your own positive attitude will help children be more accepting of changes at home, such as the installation of a new ramp, which makes it safer for Dad to go between the house and car in his wheelchair.

Allow children to share their feelings in their own way.  A young child may take changes or challenges at “face value,” not recognizing the progressive nature of ALS, and quickly return to their previous activities. School-age children with access to the Internet may investigate the disease online.  Older teens may have the ability to think through how current changes in the family may impact their near and long-term future.  Acknowledge that not all questions have immediate answers but volunteer to help them seek out information.

Allow children to see how you are impacted by ALS.  Understanding that you are sad that Dad can no longer drive or eat the same foods at the dinner table, can help children more easily relate to the situation.  Sometimes, a simple hug and a positive statement can help turn a sad feeling to a more promising thought.  You may say, “Now that Dad has a feeding tube, we don’t have to worry about him getting enough to eat and the potential of him choking.”

Children often carry the impact of the home environment into the classroom. Sally Dwyer, Director of Programs & Services with The ALS Association Mid-America Chapter and eleven year veteran of elementary education, indicates children’s behavior or academic performance may be affected by serious family illness. Dwyer highlights the value of sharing an ALS diagnosis, including the progressive losses experienced, with teachers stating, “Teachers are available to assist in supporting students and can help navigate positive experiences in the classroom.”  Alternately, some children feel school is one place that seems consistent, and they look forward to their familiar role as a student or classmate.

Child psychology experts tell us that the key to effective communication with children is to provide information in a clear, consistent manner.  It is important to:

  • tell the truth, but keep it simple and age appropriate
  • make sure the child understands that it’s not their fault
  • reassure the child that someone who loves them will always be there to take care of them
  • model a positive attitude by focusing on current quality of life aspects
  • allow children to share their thoughts and feelings, acknowledging your own appropriate emotions
  • communicate the challenges of progressive loss in ALS with teachers or coaches in the child’s life

Although each family will develop their own strategy for discussing ALS, many resources are available to assist with general or specific communication approaches.  Challenges related to the introduction of hospice care, transitions that involve life after a loved one has died, or moving into a new home are topics often discussed with professionals such as faith-based advisors or hospice social workers.  Of course, your local ALS Association chapter is there to help your family navigate the ALS journey; visit

Here are some additional resources you may find helpful:
Children and Anticipatory Grief:
Supporting Children when a family member dies: