"We encourage parents to tell their children about their diseases as soon as possible,” says Meredith Cooper, a certified child life specialist and co-founder of Wonders and Worries, a nonprofit organization in Austin, TX, that provides free support services for children and teenagers who have a parent with a serious illness. “It's normal to want to protect children, but they are perceptive. Use this opportunity to establish trust with your children so they come to you with their concerns.
“Tell your story,” continues Cooper, who is trained in helping children understand illness. “Ask what your child has seen or heard. Use simple words, such as ‘We found out that I have an illness. It's called X'—name it.” Solicit questions. If you don't know the answers, let your child know you'll find out. Cooper also recommends that parents seek professional support. “It's overwhelming for parents,” she says. “They need someone who can help them make it understandable for children.”
Many children can take in only a little at a time, so be prepared to give them information in small doses. Depending on their ages, children may listen for a bit and then go play. “You may think they didn't hear what you were saying, but that's not the case,” says Cooper, who recommends countering misperceptions. “Children may blame themselves for causing the illness or think they can catch it,” she says.
Having a family friend speak to the children may be productive. “Kids can be protective of their parents and may not reveal all their thoughts to them,” says Cooper. Teachers should be notified as well so they can be on the lookout for behavioral or academic problems that may arise.
Karen Jaffe asked her neurologist to talk to her three teenage daughters after she was diagnosed with Parkinson's disease. “He sat with them for 45 minutes and answered any questions they had,” she recalls. “He mentioned that sometimes people with Parkinson's drool, which they thought was hilarious.” Her children, now adults, have all become advocates and have raised money for research.
Jodi O'Donnell-Ames engaged a counselor for play therapy for her daughter, Alina, who was 2½ when her father, Kevin, was diagnosed with amyotrophic lateral sclerosis (ALS). “Alina was curious but also fearful,” O'Donnell-Ames says. “She had a hard time adjusting to the wheelchair, the van, the suctioning equipment, all these people.”
Even though she was a teacher herself, O'Donnell-Ames admits, “I didn't know how to handle it.” She never actually told her daughter that her father was dying. “I couldn't face the fact. I wanted to have hope. I just said, ‘Daddy is sick, and his muscles don't work.'” After her husband's death, O'Donnell-Ames co-founded Hope Loves Company, a nonprofit organization that provides resources, including camp weekends, for children and young adults whose parents have ALS.
Jaffe says she waited too long—six months—to tell her daughters, who were 13, 15, and 17 at the time of her Parkinson's diagnosis. She didn't want them to change their lives. (The oldest was preparing to go to college.) But her youngest daughter found her diary and came downstairs in tears. “I told her not to say anything—to keep it a secret from her sisters for a while,” says Jaffe. “That was the dumbest thing we could ever do.” She told all three about a month later, and there were misunderstandings and hurt feelings.
One helpful ritual Cooper mentions to families is a “worry jar.” At regular intervals, everyone writes their worries on a piece of paper (little kids may need a grown-up to write for them), and then the family discusses each one. “Establishing healthy communication within your family can create patterns that will carry you forward through the stresses that will inevitably occur,” says Cooper.
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