And when a child has a flare, the whole family can be affected. “It changed the way we did things as a family,” says Harbin of the time when Taylor was diagnosed, at age 11. Even leisure activities became different to accommodate limitations. Before Tyler was diagnosed, the family spent a lot of time at the baseball field, where both boys played. Though he tried, Taylor eventually had to give up baseball. Family outings also had to be modified for Taylor.  Extensive hiking and biking trips were replaced with an afternoon of fishing or leisurely exploration of a creek bed.

Children also have to get used to not being as active with their sibling. Jordan Harbin gets frustrated because his brother can’t play a rigorous game of basketball. Alexis Thompson misses the times when she and her sister used to ride bikes together. And Bailey Sims, 9, knows that now when she roughhouses with her brother Ryan, 12, who has pauciarticular arthritis, she has to be careful of his wrists and feet.

Making Everyone Feel Special

Experts agree that adjusting to a new family reality begins with open communication. “Be as honest as you can about the situation,” advises Fanos. “There’s less damage done to the child’s self-esteem if they understand that the time and attention the other sibling receives is out of necessity, and if they needed that kind of time, they would get it, too.”

“The fact that Victoria gets more attention than Alexis will not change,” says Kim Thompson. “But I try to help Alexis understand that the attention is not because she is needier – just that Victoria has different needs.”

Fanos encourages parents to listen to their children’s needs. “We’ve found that these kids really just want one-on-one time with their parents,” she says. “They see the sick sibling getting this alone time, even if it’s just a trip to the doctor, and they want it for themselves.”

Finding alone time is a strategy Teresa Sims has employed with daughter Bailey. “I take her to tea from time to time, one of her favorite things to do,” says Teresa, of Houston. And, whereas Ryan has to go to bed early, she’ll often give Bailey the extra perk of staying up 30 minutes later to read.

That quality time can also occasionally be shared with someone outside the family. When the Harbin family found that taking Jordan along on the six-hour trip to see Taylor’s rheumatologist was just too difficult, they started leaving him behind with close friends of his choice. “It became a special time for Jordan to receive some individual attention while we were away,” says Mary.

Fanos also advises parents to check in with siblings periodically to gauge how they’re doing. Parents can assuage some of the sibling guilt, acknowledging that such feelings as jealousy or resentment are normal. “Also, make sure you constantly reinforce ‘I love you,’” she says.