Youth Resources

At ALS United Rocky Mountain we realize that ALS affects the entire family. Coping with a loved one's diagnosis of ALS is never easy, but it is especially hard for children and young adults. When a parent or grandparent has any disease, one of the hardest things to do is discuss the illness, progression, and emotions with young ones. When children are involved, we want them to know that they are thought of during this difficult time.

Should children and adolescents in ALS families be told about the illness? The answer is a resounding, "Yes!"

There are many important reasons why children should not only be informed of the illness but included in all phases from the diagnosis onward. The question before us now is, "How in the world do we even begin to talk with our children and adolescents about the ALS diagnosis and its prognosis?"

First, recognize that discussions about ALS will vary according to the age of your children. Perhaps more important than what you say and how you say it is the fact that you are spending special time with your child and listening to his or her questions and concerns. Providing facts slowly will give your child time to digest information and return later with more questions. These are tough questions, but ones that need to be addressed for the emotional health of the child and family.

All families are unique, and each has its own customs and patterns of communication, but there are some basic principles that apply to families with children of all ages. Also, each child is different. Use what you know about YOUR child to determine how they will hear and process what you are telling them.

Featured Event

JOE’S CAMP 2026, May 1-3!

A camp for kids whose family has been touched by ALS. This is organized by The Joe Martin ALS Foundation and is provided free of charge. This camp is 3 days of friendship, fun, and outdoor adventure at Camp Cherokee in Kings Mountain State Park, SC! Travel sponsorships are available.

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Youth Education & Support Resources

Conversations With Kids About ALS

Talking to Kids & Youth about ALS: A Guide to Developmentally Appropriate Conversations

The attached guide, “Talking to Kids & Youth about ALS: A Guide to Developmentally Appropriate Conversations,” provides in-depth guidance on how to talk with children of all ages about ALS. Talking to kids and youth about ALS can be challenging, but open, honest, and age-appropriate conversations help reduce fear and confusion. ALS United Rocky Mountain offers support for families navigating these conversations, with strategies for infants, young children, and teens. By maintaining routines, encouraging questions, and creating a safe space for emotions, families can help children better understand ALS while feeling supported and connected throughout the journey.

Download Talking to Kids & Youth about ALS: A Guide to Developmentally Appropriate Conversations Guide

The Impact of "Protecting" Children from ALS

The attached guide, “The Impact of ‘Protecting’ Children from ALS,” provides in-depth guidance on how open, honest, and age-appropriate communication can better support children when a loved one is living with ALS. While families often try to shield children from the realities of the disease, research shows that children are highly observant and can experience increased fear, confusion, and self-blame when information is withheld. ALS United Rocky Mountain offers resources to help caregivers navigate these conversations, encouraging transparency, emotional support, and connection to ensure children feel included, safe, and supported throughout the ALS journey.

Download The Impact of "Protecting" Children from ALS guide for more in-depth information on this topic.

Recognizing Children as Caregivers

The attached guide, “Recognizing Children as Caregivers,” provides in-depth guidance on understanding the important role children often take on when a loved one is living with ALS. Many children quietly become caregivers, helping with daily routines while also managing emotional stress and uncertainty. ALS United Rocky Mountain offers resources to help families recognize and support young caregivers, encouraging open communication, age-appropriate responsibilities, and emotional support. By acknowledging children as caregivers, families can better support their well-being while ensuring they feel seen, valued, and connected throughout the ALS journey.

Download the Recognizing Children as Caregivers guide for more in-depth information on this topic.

Teaching Caregiving Skills

The attached guide, “Teaching Caregiving Skills,” provides in-depth guidance on how to safely and thoughtfully support children and youth who are helping care for a loved one living with ALS. Many young caregivers take on important roles, such as assisting with daily routines, communication devices, and emotional support, often without formal guidance. ALS United Rocky Mountain offers resources to help families teach caregiving skills in an age-appropriate way, ensuring children feel confident, supported, and safe while also prioritizing their well-being. By providing clear instructions, setting healthy boundaries, and encouraging open communication, families can empower young caregivers while strengthening connection and care throughout the ALS journey.

Download the Teaching Caregiving Skills for more in-depth information on this topic.

Explaining Genetics

The attached guide, “Explaining Genetics,” provides in-depth guidance on how to talk with children and youth about ALS and genetics in a clear, calm, and age-appropriate way. Conversations about genetic risk can feel overwhelming, but most ALS cases are not inherited, and children benefit from honest, simple explanations that reduce fear and confusion. ALS United Rocky Mountain offers resources to help families explain genetics, address common concerns about inheritance and responsibility, and support open, ongoing conversations as children process information over time. By fostering understanding and reassurance, families can help children feel informed, supported, and secure throughout the ALS journey

Download the Explaining Genetics for more in-depth information on this topic.

Understanding Grief Before Death: The Impact of Anticipatory Grief

The attached guide, “Understanding Grief Before Death: The Impact of Anticipatory Grief,” provides in-depth guidance on how children and youth experience grief while a loved one is still living with ALS. Anticipatory grief often begins as families face ongoing changes, loss of routine, and shifting relationships caused by this progressive disease. ALS United Rocky Mountain offers resources to help families recognize and support children through these emotional challenges, including feelings of sadness, anxiety, and confusion that can occur long before a loss. By encouraging open conversations, validating emotions, and providing supportive tools, families can help children feel understood, connected, and emotionally supported throughout the ALS journey.

Download the Understanding Grief Before Death: The Impact of Anticipatory Grief guide for more in-depth information on this topic.

Talking to Kids About Death & Dying

The attached guide, “Talking to Kids About Death and Dying,” provides in-depth guidance on how to support children and youth through difficult conversations about loss, grief, and end-of-life when a loved one is living with ALS. Talking about death can feel overwhelming, but research shows that children benefit from honest, age-appropriate communication that helps reduce anxiety and confusion. ALS United Rocky Mountain offers resources to help families navigate these conversations, encouraging openness, answering questions with clarity, and providing emotional support as children process complex feelings. By creating a safe space for discussion, families can help children feel prepared, supported, and connected throughout the ALS journey.

Download the Talking to Kids About Death and Dying guide for more in-depth information on this topic.

Talking With Your Child's School

The attached guide, “Talking With Your Child’s School,” provides in-depth guidance on how families navigating ALS can communicate with teachers and school staff to support children who may also be young caregivers. When a loved one is living with ALS, children can experience emotional stress, changes in routine, and challenges with attendance or focus. ALS United Rocky Mountain offers resources to help families build strong partnerships with schools, ensuring children receive the understanding, flexibility, and support they need to succeed both academically and emotionally. By sharing information thoughtfully and advocating for their child’s needs, families can create a supportive environment where children feel seen, supported, and able to thrive.

Download the Talking With Your Child's School guide for more in-depth information on this topic.

Additional Nonprofits that Support Children

Hope Loves Company: The only nonprofit in the U.S. dedicated to providing emotional and educational support to children and young adults who have or had a loved one battling Amyotrophic Lateral Sclerosis (ALS) or Lou Gehrig's disease.

ALS Society of Canada: An illness like ALS brings about many changes and affects every member of the family. Children and teens may have concerns, fears, and questions they don’t know how to cope with or articulate. The following resources are designed especially to help children and teens who have a family member living with ALS.

Wonders & Worries: provides free, professional support for children and teenagers through a parent’s serious illness, so that they can reach their full potential. They have resources for discussing illness with children, recommended reading for parents and children, and more.

Talking with Children and Youth about ALS: Talking about ALS brings up a lot of emotions, and this can be both hard for the parents and children. The webinar below is brought to us by the Jefferson Weinberg ALS Center and shares how to start having these hard conversations.

For Kids and Youth

What is Anticipatory Grief

The attached guide, “What is Anticipatory Grief,” provides in-depth guidance to help children and youth understand the emotions they may experience when a loved one is living with ALS. Anticipatory grief can begin before a loss occurs, as children notice changes in abilities, routines, and connection with their loved one. ALS United Rocky Mountain offers resources to support families in helping children process feelings such as sadness, worry, confusion, and frustration in a healthy way. By encouraging open conversations, reassurance, and emotional expression, families can help children feel supported, understood, and connected throughout the ALS journey.

Download the What is Anticipatory Grief guide for more in-depth information on this topic.

Talking to Your Friends

The attached guide, “Talking to Your Peers about ALS,” provides in-depth guidance to help children and youth navigate conversations with peers when a loved one is living with ALS. Talking about ALS can feel difficult, but open communication can help reduce feelings of isolation, confusion, and stress. ALS United Rocky Mountain offers resources to support young people in sharing their experiences in a way that feels comfortable, setting boundaries, and building understanding with friends. By encouraging honest conversations and emotional expression, families can help children feel supported, connected, and less alone throughout the ALS journey.

Download the "Talking to Your Peers about ALS" guide for more in-depth information on this topic.

What is ALS?

The attached guide, “What is ALS” provides in-depth guidance to help children and youth understand amyotrophic lateral sclerosis (ALS) in a simple, clear, and age-appropriate way. ALS is a progressive neurological disease that affects how the brain communicates with muscles, leading to weakness and loss of movement over time. ALS United Rocky Mountain offers resources to help families explain ALS, answer common questions, and support children as they process changes in a loved one’s abilities. By encouraging open conversations, reassurance, and understanding, families can help children feel informed, supported, and connected throughout the ALS journey.

Download the "What is ALS" guide for more in-depth information on this topic.

Youth Literature for Coping and Understanding

And Love Speaks

By: Jamie L Blair (Author), Elie James Wile (Author), Mark Nino Balita (Illustrator)

"Grandma said she's sick, but she looks fine to me. She has a disease called ALS that makes it hard for her muscles to work. My whole family is learning new ways to help her, but I miss how things used to be." Children bring kisses, hugs, caregiving, and joy to those living with ALS, but at the same time, those children may be experiencing confusion, fear, and worry as they watch the person they love face a scary disease. And Love Speaks helps to navigate those difficult feelings and conversations, to help children understand that their loved one with ALS is the same person inside, and to maximize quality time together, ensuring every moment counts.

Grandma's Voice: A Children's Guide to ALS

By: Martha Whitaker

Grandma's Voice is a heartfelt and compassionate children's book that gently explores the impact of ALS (Amyotrophic Lateral Sclerosis) from a child's perspective. Through the eyes of a young girl, the story follows her journey of understanding and navigating her Grandma's diagnosis and the changes it brings. As Grandma's voice fades and her abilities decline, the child learns about love, resilience, and the importance of cherishing memories. This story offers a sensitive introduction to a difficult topic, showing how families can support each other through hardship and how love endures even when words can no longer be spoken. Filled with tenderness and hope, Grandma's Voice is an empowering book for young readers and their families to have meaningful conversations about illness, loss, and the bonds that hold us together.

For Young Adults

Planning for the Future

The attached guide, “Planning Your Future,” provides in-depth guidance for young adults navigating life while a loved one is living with ALS. Balancing caregiving responsibilities with school, work, relationships, and personal goals can feel overwhelming, often bringing up uncertainty, stress, and anticipatory grief. ALS United Rocky Mountain offers resources to help young adults reflect on their priorities, plan for changing roles, and identify the support they need to move forward with confidence. By encouraging self-awareness, emotional support, and practical planning, families can empower young adults to care for both their loved ones and their own future during the ALS journey.

Download the "Planning Your Future" guide for more in-depth information on this topic.

Maintaining Your Sense of Self

The attached guide, “Maintaining Your Sense of Self,” provides in-depth guidance for young adults balancing caregiving responsibilities while a loved one is living with ALS. Caregiving can become all-consuming, but it is important to remember that it is something you do, not who you are. ALS United Rocky Mountain offers resources to help young adults stay connected to their identity, values, and personal goals while navigating the emotional and physical demands of ALS. By encouraging self-reflection, setting healthy boundaries, and prioritizing moments of joy and connection, families can support young adults in maintaining their well-being, sense of purpose, and personal growth throughout the ALS journey.

Download the "Maintaining Your Sense of Self" guide for more in-depth information on this topic.

A list of college scholarships offered to children of people with ALS.

Talking With Children And Youth About ALS Video

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How to Explain ALS to a Child

When a loved one is diagnosed with ALS, children naturally have questions and concerns that require thoughtful responses. Starting open conversations using age-appropriate language helps children process changes they observe. For younger children, focus on simple explanations about muscle weakness, while teens can handle more detailed information about disease progression. These discussions with children about ALS should emphasize that feelings of confusion or sadness are normal.

Books like "And Love Speaks" and "Grandma's Voice" provide gentle entry points for explaining physical changes while reinforcing enduring love. Visual aids and honest Q&A sessions help demystify medical equipment like wheelchairs or communication devices. Remember that ALS support for kids works best when conversations are ongoing rather than one-time events, allowing understanding to develop as the disease evolves.

Creating space for children to express emotions through art, play, or journaling can reveal unspoken worries. Many families find that involving children in caregiving activities, adjusted to their age level, helps maintain connection. Organizations like Hope Loves Company specialize in youth resources ALS families can trust, offering camps and peer support programs where kids connect with others sharing similar experiences.

Professional counselors recommend regular check-ins, as children may have new questions as the disease progresses. Schools should be informed to provide appropriate support through counseling services or classroom accommodations. This comprehensive approach to talking to children about ALS helps young people feel secure while navigating complex family changes.