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.
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 also be included in all phases from the diagnosis on. 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 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. Yet, 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.
Youth Education & Support Materials
Real Kids Talk About ALS: Feeling Normal, Sad, and Different
Graphic novel for youth, ages 7-12. Delivered in a graphic novel format, this book uses direct quotes from youth in the ALS research projects. These quotes help situate the learning style and experiences of children in ALS.
Choose your own adventure guide, middle school youth, ages 13-18. This book follows the stories of three youth, providing options for how they talked to people, who they talked to, and what was the outcome. The book allows other youth to choose who they might want to talk about ALS and their experiences. A companion online version has been developed.
School, Friends, Work, and ALS: A Young Adult Guide to Balancing Life with ALS
Older youth/young adult guide, ages 19-25. This book takes a more serious tone, again following several young adults as they manage their own lives with the care needed for their loved one with ALS, school and relationships. It is minimally illustrated and again uses actual stories and quotes.
Families and ALS: A Guide for Talking with and Supporting Children and Youths
This resource guide was created primarily for families living with ALS, including parents, grandparents, siblings, and other family members. The goal of this guide is to help families start answering many of the questions that will be asked, as well as to offer support and suggestions for professionals assisting with families affected by ALS. A key theme throughout this guide is communication — how to do it, maintain it, and include it in everyday life.
At School: A Guide to Supporting Students Who Have Been Affected by ALS
While much attention is paid to the person living with ALS and their adult family member/caregivers, children are often voiceless, despite experiencing much of the same shock, sadness, caregiving, and grief as adults. Over the years, Dr. Kavanaugh has met with school personnel asking for guidance, manuals, and education on how to talk about and support children and adolescents living with and caring for a person living with ALS. These professionals recognized the limited information and the need to receive guidance in order to lessen the potential social isolation felt by kids in families with ALS — particularly in terms of how these issues affect school performance and attendance. This guide was created to address the needs of school staff and personnel working with children impacted by ALS.
This table offers starting points to think about how to talk to and engage children across different ages. While there is no “right” way, understanding how to approach the conversation by age group can be extremely useful.
The Dougy Center provides grief support in a safe place where children, teens, young adults, and their families can share their experiences before and after a death. Their website has a wealth of resources for youth and adults dealing with progressive illness and grief and loss. The Dougy Center services are based out of the Portland metro area, but with their worldwide program finder, you can search for grief support near you.
Hope Loves Company is a nonprofitorganization that providesemotional and educational support to children and young adults impacted by ALS. They offer camps, virtual meet ups, resources, and activities for children, teens, and young adults. Learn more about their programs.
Youth Action Day is an opportunity for kids, teenagers, and young adults across the country to take a stand against ALS! Pick a challenge below or create your own idea!
Share your talent- Showcase your hobby and fundraise at the same time!
Write letters to members of congress telling them why ALS research is important
Educate your friends, family members, or school about ALS
Share your hero: Post a picture of your ALS hero on social media using hashtags #ALSHERO and #ALSYouthAction
Family Day Events- Save the dates!
Join in on a fun day for the whole family. Children, Teens, Grandchildren, and Kids at heart are all invited to participate! This is a wonderful opportunity to meet others and have some fun. Look out for further details and invitation soon.
Portland Metro Family Day: Saturday, October 7th, OMSI
Southern Oregon Family Day: Saturday, September 16th, TBD
Willamette Valley Family Day: Sunday, October 15th, Newport Aquarium
Central Oregon Family Day: Saturday, September 23rd, TBD
For support in finding local youth counseling resources, please contact our chapter’s Care Services team at careservices@alsoregon.org or 503-238-5559 ext 100. We are here to help every step of the way and can provide additional information and advice as needed.
This resource guide was created primarily for families living with ALS, including parents, grandparents, siblings, and other family members. The goal of this guide is to help families start answering many of the questions that will be asked, as well as to offer support and suggestions for professionals assisting with families affected by ALS. A key theme throughout this guide is communication — how to do it, maintain it, and include it in everyday life.
The Dougy Center
