Telling Children About ALS

A diagnosis of ALS can be frightening and challenging for most adults. You may be feeling angry, confused, sad, or afraid. You may not even fully understand what ALS is or the impact this disease will have on you and your family. You may also not know how to tell others about your diagnosis, what words to use, or how in-depth your explanation should be. Telling other adult family members and friends may be difficult enough, but finding the words to tell your children is often even harder.

As parents and grandparents, a natural tendency is to protect or shield children from the worries and fears of a serious illness in the family. However, do not be fooled into thinking that your children do not know something is wrong, even if you have not told them. Even the youngest child has the uncanny knack of sensing or figuring out that something is seriously wrong. If you have not opened the dialogue about ALS with your child, he/she may not feel comfortable asking or talking with you about what is going on. Without this conversation, your child can live with fears and worries of the unknown. A child’s creative imagination can often conger up scenarios that are grossly inaccurate or terribly frightening. Children can even feel they are somehow to blame for what is wrong and live with unfounded guilt. Therefore, honesty is definitely the best policy when sharing your medical situation with children.

In addition to alleviating children’s fears, honesty about ALS also promotes the notion that ALS is not something about which the child should be embarrassed or ashamed. As new changes develop in your health and abilities, allowing the child to understand and discuss these changes gives him/her a greater sense of trust in you. The only thing scarier for a child than having a parent who is seriously ill is not having a sense of trust and comfort with you, their primary source of security.

Speaking to your child in an age appropriate manner is equally as important as being honest about your disease. Not only do children learn and absorb information differently than adults, but they process information differently based upon several developmental stages in their childhood. Intellectually and emotionally, a preschool age child cannot comprehend what an elementary school child can. The same is true for older age groups; their ability to understand and process information and concepts hinges on their developmental maturity. Therefore, the language you use to explain your disease and the amount of information you provide should be determined by the age of your child. If you have children of varying developmental ages, you should be discussing your diagnosis differently with each child. The key is to provide each of them with information that is age appropriate, while introducing a dialogue for future discussion and building an atmosphere of trust and openness.

In talking with your child, use words that your child can comprehend. Clarify your child’s understanding as you discuss ALS and its impact on you and your family. It is not uncommon for children to misinterpret what you are saying, simply because they did not understand an explanation or comment you have made. Children may also feel guilty, thinking that in some way they have caused your disease. It is important to reassure them that while doctors do not know exactly what causes ALS, we do know it was not caused by anything you or your child has done or said.

Encourage your children to ask questions and respond as honestly as you can.  However, consider the meaning of their inquiries when responding to them. For example, if you should fall and your young child asks, “Are you okay?,” s/he is probably wanting to know if you are hurt by your mishap. An older child, however, is more likely to be associating your fall with your diagnosis and may be asking if ALS will continue to affect you in this way. Gauge the complexity of your answer to the age of your child and the context of the question. Remember that children often learn in smaller “bites” of information, so tailor your responses accordingly. For example, when asked by your child if you will “get better,” you may need to differentiate between a reply about symptom management versus a disease cure. For a younger child, you may want to explain that through managing and accommodating your symptoms, you can move, breathe, or speak “better.” However, for an older child or a child who has more knowledge about your illness, you may need to directly address the fact that there is no cure to stop the disease or reverse the effects it has had on you.

Besides establishing an environment of security and trust, sharing information about your ALS diagnosis should also convey several other messages to your children. Through your honesty and openness, your children/grandchildren will have the basic tools for helping live well together as a family touched by ALS.

  • Be willing to admit that ALS is a confusing and upsetting disease. Explain that it is hard to understand why ALS happens and what effects it will have on you and your family. Acknowledge your frustration as well as theirs.
  • Emphasize that no one is at fault for your getting ALS. Explain that doctors and scientists do not know exactly what causes ALS. Especially point out that nothing you and anyone else did caused your ALS. ALS is not a punishment.
  • Stress acceptance and respect for yourself (or the family member with ALS). Encourage your children to ask questions about this disease and its impact on your life. Also, support their efforts to offer help at what ever level they are able.
  • Offer optimism and hope. Researchers are working every day to find a treatment and/or a cure. They may find positive results at any time.
    • Also, be willing to “live in the moment.” Allow yourself and your family to enjoy the joys of each day as they occur. This perspective offers continual hope for “good” days together as you live with ALS.

Children’s Reactions

You should also be aware that your children’s reaction may be different than you expect. For instance, your child may seem disinterested, or ask questions that seem irrelevant. He/she may abruptly begin playing with toys during a conversation or act out in his/her play. Children may demonstrate a range of emotions, initially being angry or sad, but moving quickly into silliness or happiness. All of these reactions are normal for children. It is important to understand that they are processing as is appropriate for children of their developmental age. Allow your children time to process the information and work through these reactions. Expression of their emotions and feelings is healthy. Your children need to be allowed to accommodate these changes into their lives, developing the coping skills that will help them, while allowing for on-going openness and dialogue about the changes that are occurring.

Other considerations

As your disease progresses, you will want to keep the lines of communication open and help your child understand and prepare for what is happening. Please consider the following issues:

  • Explain changes in your health as they occur in age appropriate terms that your child will understand.
  • Do not assume that your child will react to each of your medical or physical changes. Reassess what your child is thinking and feeling. S/he may not be affected by changes as you think they might; alternatively, s/he may be greatly affected by something that you consider minor.
  • Validate their feelings as normal. Every emotion they have can be “normal.” Help them find positive ways to express these emotions.
  • Recognize that, as your medical condition changes, so will your physical appearance. Acknowledge with your child the social reactions you get and help them to understand that others may react negatively or rudely due to being fearful or uninformed about a disease they do not understand.
  • Talk with your child about issues other than ALS. Ask questions about school, friends, hobbies, television shows, or internet games. Remain an active part of their lives.
  • Explain to your child that your irritability or personality changes may be due to the progression of your ALS. Watch for signs of anxiety or feelings of discouragement from your child; they may be feeling that they are to blame for your negative moods.

References for this article:
BJC Hospice and Supportive Care. A child’s concept of death by Sister Teresa McIntier, R.N., M.S.

BJC Hospice and Supportive Care. Young adults and grief: Information packet by Beth Barrett, MSW.

Fieldman, Laurie B. Presentation handout: How to help children coping with ALS in the family.

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