TORONTO, CANADA- Guilt. Abandonment. Sorrow. Confusion. Isolation. These are just some of the feelings a child whose parent has ALS may experience on a regular basis.
Jane McCarthy, director of services and education at the ALS Society of Canada, has expanded the web site-based information and support program, specifically for young children and teens called als411. The site provides children with resources to gain knowledge about the disease and to explore how to cope with their situation
“The site offers more support programs for kids as well as opportunities for them to get involved in the fight against ALS. Self-empowerment can be an extremely effective coping strategy,” says McCarthy.
The program has expanded to feature young people doing amazing things related to raising ALS awareness, fundraising and care giving. The site also includes crosswords, word searches, interactive animated activities, puzzles and links to other resources. McCarthy hopes to develop an educational awareness-raising film, if funds can be secured.
“Children living with a parent who has ALS often feel they don’t have many people with whom they can discuss their feelings about the disease,” says McCarthy. “The other adult (or parent) in the home is busy care giving and maintaining a household, while school-aged friends are perceived to be unable to relate to what his or her friend is going through. This often leaves the child alone to deal with his or her emotions.”
The als411 program is available in French and English and is both user friendly and age appropriate. There are many resources available at www.als411.ca including everything from how to understand what ALS is, to learning from other children who have survived the loss of a parent to this devastating disease. In addition, there is information specifically aimed at parents, offering suggestions on how to discuss ALS with their children.
Visit als411 at www.als411.ca.
Brochures to help parents and children are available at www.als411.ca/
More information about ALS is available at www.als.ca.
