ALS Resources for Families, Children, and Teens

Supporting Children and Teens When a Loved One Has ALS

When someone in the family is living with ALS (amyotrophic lateral sclerosis), children and teens may experience a wide range of emotions, confusion, sadness, fear, or even frustration. These reactions are completely normal.

Providing age-appropriate information, emotional support, and open communication can help young people better understand what is happening and feel more secure during a difficult time.

This page offers trusted ALS family resources, including guides, books, and practical strategies to help children, teens, and caregivers navigate the emotional impact of ALS together.

How to Explain ALS to Children and Teens

Children process illness differently depending on their age and development. Clear, honest, and simple communication is key.

For younger children:

Use simple, concrete language
Explain that ALS affects how the body moves and works
Reassure them that they did not cause the illness

For school-age children:

Encourage questions and answer honestly
Prepare them for visible changes over time
Maintain routines to create stability

For teenagers:

Offer more detailed information about ALS
Acknowledge complex emotions (fear, anger, sadness)
Respect their need for space while staying available

Tip from our care team:
Our social workers and mental health clinicians encourage families to revisit conversations over time, as children often process information in stages.

Signs a Child May Need Extra Support

Children and teens may not always express their feelings directly. Watch for signs such as:

Withdrawal from family or friends
Changes in school performance
Increased anxiety, sadness, or irritability
Trouble sleeping or changes in appetite

If you notice these changes, additional support, such as counseling or support groups, can be helpful.

Educational Resource for Families

This educational pamphlet provides practical guidance for supporting children and teens impacted by ALS, including:

Age-appropriate explanations of ALS
Emotional support strategies
Tips for family communication
Guidance on when to seek additional help

Download the ALS youth and family support guide
Recommended for: parents, guardians, grandparents, and caregivers supporting children or teens.

Recommended Books for Children, Teens, and Families

Stories can help children and teens process emotions and better understand illness. This curated list of books is designed for:

Children
Teens
Adults
Families coping with serious illness

These books can help with:

Emotional validation
Coping strategies
Starting difficult conversations
Building understanding and empathy

Why Supporting Children Matters

Children and teens often experience illness in the family differently than adults. Without clear communication and support, they may feel confused, excluded, or overwhelmed.

Providing honest information, emotional reassurance, and consistent support helps young people:

Feel included and informed
Build emotional resilience
Develop healthy coping skills
Maintain a sense of stability

These resources are designed to support, not replace, guidance from healthcare professionals, counselors, and social workers.

Additional Support for Families

You don’t have to navigate this alone. ALS United Mid-Atlantic offers support services to help families care for both their loved one and their children.

Our social work team can help connect you with:

Counseling and mental health services
Family and youth support resources
Community programs and referrals
Guidance for navigating difficult conversations

Connect with a social worker for family support
Explore ALS caregiver support resources