Support and Resources for Children

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 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.

Youth Education & Support Materials

Youth Support Resources

Dougy Center Youth Resources ALSThe Dougy Center

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

Hope Loves Company is a nonprofit organization that provides emotional 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.

Wonders & Worries

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 parenting support and tips.

The National Alliance for Grieving Children

The National Alliance for Grieving Children is a national nonprofit with resources for support children experiencing grief and loss. Their Grief Support Resource Library has a wealth of resources for all ages.

Family Fun Day Events

Every year we host no-cost youth and family day activities across the State of Oregon in the summer and fall. Check the events calendar to find the next one near you or contact care services staff at 503-238-5559.

For support in finding local youth counseling resources, please contact our 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.

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