Helping Kids and Teens Deal with ALS and Grief

Children and teens that see a parent, grandparent or other family member progress with ALS and experience death are not immune to the pain, anger, frustration and confusion that adults experience. Depending on their age and maturity level, their understanding and needs vary widely and it can be very challenging to know how best to help them.

Complicating the experience is the natural tendency of adults to avoid talking about death with children and teens, largely because they’re unsure of what to say and how to deal with the questions and emotions that may be expressed. Experts say it is pointless to try to protect children and teens by avoiding the issues. Children and adolescents are helped when the adults around them recognize their grief and support them. 

It’s important for anyone talking with children and teens to understand the impact developmental maturity and family dynamics have on an individual’s reaction to death and dying. According to the American Academy of Child & Adolescent Psychiatry (AACAP), children react differently from adults. Preschoolers don’t understand the permanence of death, while children in grades K to 4 typically think death won’t happen to them or to anyone they know. When death impacts a family, the children are doubly affected because their parents and siblings are also reacting to their grief, often making them less emotionally available or more brittle and unpredictable. 

The AACAP says children who are having serious problems with grief and loss may show one or more of these signs:

  •  Loss of interest in daily activities and events 
  •  Inability to sleep, loss of appetite, prolonged fear of being alone 
  •  Acting younger for an extended period of time 
  •  Excessively imitating the person who has died 
  •  Repeated statements of wanting to die to be with the person who has passed away 
  •  Withdrawal from friends 
  •  Sharp drop in school performance or refusal to attend school 

While support groups for children and teens could be helpful, groups that are specific to ALS are uncommon. Children and teens will tend to have questions about the disease process itself, so it’s important to have group leaders or participants who understand ALS. Because of the dearth of ALS-specific groups for children and teens, it might be beneficial to seek out individual counseling and support.  After the person with ALS has died, more general grieving support groups may be helpful because the specifics of the disease process with ALS will matter much less at that point and there will be many commonalities between group members as they cope with grief and loss. 

Children and teens are often helped by finding something meaningful and important they can do to help the family member or advance understanding of the disease. Raising money to help fund global research efforts for a cure for ALS and the very best treatment, care, resources and support for patients and families living today with the overwhelming challenges of Lou Gehrig's Disease, participating the Walk to Defeat ALS or even writing a school report on ALS can be helpful to them.

The bottom line: it’s important to be aware of the child or teenager’s perspective and understanding of the situation, and then it’s essential to help them talk and walk their way through the grieving process. 

For more information, please contact us


Author Information:

Barbara Bronson Gray, RN, MN in collaboration with the St. Louis Chapter

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