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Supporting Kids and Teens through ALS


As adults, the need to protect the children we love from pain and heartache is undeniable. Whether you’re a parent, grandparent, aunt/uncle, teacher or other caregiver, the instinct is often to shield the children you love from anything with the potential to cause harm. Knowing this is not always possible, how do we support children through inevitable distress, like when someone they love is diagnosed with ALS? What do you tell them? And when? How much information is too much or too little? What are signs your child is struggling? These are difficult questions and the answers are not always straightforward.

Wonders & Worries, a nonprofit organization serving children coping with a parent’s illness, offers guidance on how to talk to children and teens about a serious diagnosis.

Honesty is your best asset. Provide honest and accurate information that is appropriate for your child’s developmental stage related to the illness and treatments. It can be helpful to talk with older children first, and to give them the opportunity to help explain the situation to younger children.

Children process information differently and often need to hear things more than once. It’s normal for a child to request to “go play” soon after hearing difficult information. This does not mean that he/she did not understand.

Say the name of the disease. Many children will hear it eventually. If your child hears family members explain the diagnosis, it can help them feel included and trusted.

Keep children and teens informed about the current medical status as you know it. You don’t need to have all of the answers when you talk with your child.

Find out the answers to their questions. If your child asks a question, and you don’t know the answer — tell them you don’t know. And tell them you will let them know when you have more information.

Share the treatment plan. Let children know what you’re doing to help treat the illness and what the side effects might be. Explain changes related to your energy level, appearance and mood.

Be prepared to discuss difficult topics, including death. It’s normal for children to ask if someone might die from a serious illness. If the illness is terminal, you can focus on what’s happening now and what’s expected in the near future. You can let children know that you’ll keep them informed if/when things change.

Fill in missing information with facts and experiences. If possible, offer children the choice to go visit the treatment center or hospital. Or find an appropriate video online. Make sure they’re well prepared for what to expect. 

Talk about biological origins of disease. Stress to your child that they didn’t cause the illness in any way and that it’s not contagious (if this is true).

Encourage children to ask questions. Older children and teens may even want to ask the medical staff questions.

Provide space and opportunities for emotions. Help your children express their feelings and let them know that you’re willing to talk about anything they’d like to discuss. Help your child find acceptable ways to express anger.

Express your emotions in front of your children. This models for them that it’s okay to feel and have different emotions at different times.

Encourage your children to talk to alternative support people. They may be afraid or embarrassed to talk to the person with the illness in fear that it may upset them.

Maintain your routines. Predictability gives your children a sense of security during an uncertain time. Explain any necessary changes in routines. For example, “Nana will pick you up from school this week.”

Give permission to play. Let children and teens know they can still have fun and do normal activities even though your family is dealing with a serious illness.

Reassure children that they will be cared for no matter what happens. Talk about who is available to help take care of them, and make a safety plan in case you need to go to the hospital unexpectedly.

Allow children to find ways to help and include them in new family routines related to the illness. Be careful, however, not to put too much additional responsibility on children.

Look for changes in behavior. Specifically, look for changes in mood, eating habits, interests, sleeping patterns, etc.

Inform schools about what is going on in the family, as it may impact your child’s school performance.

Find others like you. If possible, have your children interact with other children and teens who may be facing similar life experiences. It can help them know they’re not alone.

In addition to Wonders & Worries, other resources are available to help you help your children through this experience. We’ve compiled a list on supporting children and teens when a loved one is diagnosed with ALS, and hope you find these helpful.

You are not alone. We’ve got your back every step of the way

Connect with an I AM ALS Navigator today

Have questions? Call us at 866.942.6257 between 9 a.m. - 5 p.m. or email us

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