When a Parent has ALS: helping children cope
Guilt. Abandonment. Sorrow. Confusion. Isolation. These are just some of the feelings a child whose parent has ALS may experience on a regular basis. But, there is hope. Jane McCarthy, director of services and education at the ALS Society of Canada, has developed a web site-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 2008, 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. 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,” explains McCarthy.
The als411 program is available in French and English and is both user friendly and age appropriate. There are many resources (available via www.als411.ca), everything from how to understand what ALS is, to learning from other young people who have survived the loss of a parent to this devastating disease. Both sites feature audio components to more effectively engage the user. The entire children’s site is audio driven which is especially helpful to children who have not yet mastered reading skills. 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,” says McCarthy.
“Since first launching als411, some of the Provincial ALS Societies have implemented new programs to support children. We have also heard several stories about kids getting involved in public awareness and fundraising. Young people are encouraged on the als411 web sites to share their personal stories and tell us how they are making a difference. We hope to continually add such stories to the als411 teen web site as a way to publicly feature these amazing, brave role models.”
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. Approximately 2,500 - 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. The ALS Society 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.