talking with children

'Palliative care' means more than 'end-of-life' care for children and families coping with muscle disease

posted on July 1, 2009 - 11:06am
Families face complicated health care decisions when coping with a child’s neuromuscular disease, and the best course of action isn’t always clear. Often, the child’s doctors are in uncharted territory too. Now, MDA is trying to provide a road map through this confusing, emotional time by offering families and physicians enhanced “palliative care” services for the children it serves.

Siblings of children with disabilities have a unique growing-up experience

posted on January 1, 2004 - 10:00pm
I discovered that my sons, ages 10 and 13, were drinking a soda apiece as an after-school snack. This is gonna stop, I announced firmly. But instead it suddenly shot way beyond soda pop. "Does Sarah still get a soda then?" the boys demanded. Their older sister, 20, has cerebral palsy and mental retardation. She enjoys a soda after school each day the way some people savor a cocktail after work....