Support and Resources for Youth
The illness of a parent or loved one can affect the emotional, social, and behavioral development of children. Most families want to protect their children from the news of hearing that their loved one has a terminal illness. While there is no right or wrong way for you to discuss this topic with your children, it is important to understand that there are resources to support you in this.
Kids Need Support Too
ALS United Greater Chicago strives to support individuals impacted by ALS and their families. We strive to create programs to support you and your loved ones through every step of your ALS journey. We hope this page and attached resources and links serve as a guide to help children navigate the emotional, social, and behavioral changes they may experience while their loved one battles ALS. Here you will find:
- age-appropriate PDFs
- counseling resources
- and books to help them understand ALS and its impact on their loved ones.
These resources aim to support and prepare children for the effects of ALS, offering valuable guidance throughout their journey.
Sunny Side Features: We’re looking for families to feature in our monthly Sunny Side Features! Share your journey, highlight how ALS youth resources have helped, and inspire others in our community. If you're interested in being a part of this special series, reach out to Brianna Neal, MSW, LSW, at brianna@alsunitedchicago.org. We’d love to hear your story!
Books
- And Love Speaks: Helping Children Understand ALS book by Jamie L Blair and Elie James Wile for ages 5-10. View on Amazon.
- But She Still Can Love: A Child’s Understanding of ALS book by Amalia Flecksteiner and Maggie Horton for ages 5-10. View on Amazon.
- Why My Grandma Is So Brave! book by Crystal Holscher for ages 5-10. View on Amazon.
- Smile With Me Forever and Ever: Even With ALS book by Kathleen Ellen for agest 5-10. View on Amazon.
Toolkits
- Wonders & Worries offers free support for children and teens (ages 2–18) navigating the challenges of a loved one’s serious illness. Their online resources are packed with tools for both parents and young caregivers. Explore here.
- Massachusetts General Hospital’s Marjorie E Korff Pact Program: Parenting at a Challenging Time put together a toolkit providing practical guidance you can check out at: Toolkit to Help Educators Support Children of Parents with Serious Illness.
- Dougy Center is a Portland-based center with resources support kids, teens, young adults, and parents/caregivers. They also have grief podcasts located on their page by trained licensed professionals who specializes in grief and anticipatory grief. Explore the resources here.
- ALS Society of Canada curated resources like Talking with Young People about ALS and other helpful youth-oriented PDFs for schools and families. Read here.
- I Am ALS has compiled a list of college scholarships available for students who have been impacted by ALS. View and download here.
Worksheets & PDFs
- Sunflower Petal Project worksheet for ages 3-6. This simple yet impactful worksheet invites young children to fill in sunflower petals with activities they love doing with their loved one with ALS. It promotes dialogue and helps families adapt these activities as needed, ensuring cherished moments continue, like enjoying a walk together with the aid of a wheelchair. View and Download Here.
- Red Lights/Green Lights of ALS worksheet for ages 5-8. visually distinguish between activities their loved one with ALS can or cannot participate in. By coloring a stoplight green or red, children can better understand and communicate about these activities. View and Download Here.
- ALS Word Search worksheet to get familiar with words surrounding life with ALS. View and Download Here.
- "The five W's and How" comprehensive worksheet designed to help teenagers and young adults learn about ALS. View and Download Here.
Media
- Luki and the Lights is an honest, animated short film about ALS with an accompanying educational packet. Watch here.
- Mindful Powers (Ages 7-10) This app supports children with challenging and stressful events through play. It provides a skilled based approach that helps children navigate through stress, anxiety, build healthier relationships, and life challenges. Download Here.
- Mostly Mindful (Ages 12-17) Weekly podcasts that explore different strategies and support tweens and teens with resilience through difficult life changes and stressors. Listen Here.
Organizations
- Global Neuro Ycare is a specialized day-long training designed for young caregivers, offering hands-on skills and knowledge through sessions led by a diverse team of healthcare professionals. It aims to build a supportive peer network and enhance caregiving capabilities in a dynamic and engaging setting. Learn more: globalneuroycare.org
- Hope Loves Company provides emotional and educational support to children and young adults who had or have a loved one impacted by ALS. They have a network of online and in-person gatherings across the US. Learn more: hopelovescompany.org
- Winning with ALS offers grants and support for families with children who are living with a parent diagnosed with ALS. Learn more: winningwithals.org/about
- Barr Harris Children Grief Center, part of the Chicago Psychoanalytic Institute, offers support in specialized services provided in Downtown Chicago and Evanston for children and adolescents ages 5-18 and families who have experienced a significant loss such as the loss of a parent, caregiver, or sibling. Learn more: https://chicagoanalysis.org/barr-harris-program/
- Catholic Charities offers comprehensive counseling services to residents of Cook or Lake Counties. Spanish and English services are available online or in person and flexible payment options are available. Reach out to the intake line at 312-655-7725 or email counselingintake@catholiccharities.net.
- The National Alliance for Grieving Children consists of dedicated professionals willing to support children who are grieving and connect with communities and organizations to better support children. They have a list of programs and grief centers that can be found by state. Learn more: nacg.org
- ALSCaregivers.org provides information created by and for ALS caregivers. Check out their full library, especially Overcoming Relationship Challenges.
Webinars
- Supporting the Unsung Heroes: Children and Youth of ALS Warriors - Watch Here
This presentation is designed to provide crucial support and resources for young individuals impacted by ALS within their families. Recognizing the significant challenges faced by children and youth who have a loved one battling ALS, this presentation offers a range of tailored resources to address their emotional, social, and practical needs. The aim is to empower these young individuals, equipping them with the tools and support necessary to navigate the complexities of living with a family member affected by ALS. - Kids Need Support Too | Recorded October 11, 2022 - Watch Here
Anticipatory grief is the anticipation of loss, often felt when a loved one is facing a terminal illness. Experts in the field will present information and resources about anticipatory grief, age-appropriate expressions of grief, and resources to cope with the losses associated with ALS.
Experts in the field present information and resources about anticipatory grief, age-appropriate expressions of grief, and resources to cope with the losses associated with ALS. Recorded October 11, 2022.
Living Well with ALS | Kids Need Support Too
Build Your Support Toolbox
Coloring Books
Taking some time to color can relax your brain -- at any age!
Worry Box
Write your worries in a box and let them go. You can go through them with your loved one when you are ready.
Silly Putty/Fidget Tools
Keep your hands busy and work out nervous energy.
Journal
Writing out your feelings is an important tool for managing big emotions. Use a journal for topics you want to "write to remember" or purge frustrations as you "write to forget."
Memory Projects
Activities like creating a scrapbook or recording special moments with their parent.
Mindfulness Apps or Guided Meditations
Tools like age-appropriate meditation apps can help kids relax and manage stress.
