Guilt. Abandonment. Sorrow. Confusion.
Those are just some of the feelings a child whose parent has ALS may experience on a regular basis – but there’s hope.
Jane McCarthy, director of services and education at the ALS Society of Canada, has developed a website-based information and support program, specifically for young children and teens, called als411.
Originally launched in December 2006, als411 provides children with resources to gain knowledge about the disease and to explore how to cope with their situation. New and improved separate web sites for children and teens, launched in November, can be accessed from the new domain, www.als411.ca.
“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,” said 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 children’s sub-site also includes interactive games such as crosswords, jigsaw puzzles, and matching tiles. Links to a number of other resources and web sites are also featured on both the children and teen sub-sites.
“From here, I hope the initiative continues to grow and spur interest at the local level, to offer 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,” said McCarthy.
ALS, more commonly known as Lou Gehrig’s disease, is a fatal neuromuscular disease that attacks and paralyzes the muscles, ultimately resulting in death. ALS can affect men and women from any ethnic origin at any age.
About 2,500 to 3,000 Canadians are living with the disease. And, 80 per cent of those affected will die within two to five years of diagnosis.
The Amyotrophic Lateral Sclerosis (ALS) Society of Canada was founded in 1977. It is the only national voluntary organization dedicated solely to the fight against ALS and support for those with ALS.
The mission of the ALS Society of Canada is to fund research towards a cure for ALS and support provincial Societies to provide quality care for those affected by ALS.
