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One of the challenges many siblings face when the time comes for them to assume responsibility for their disabled brother or sister, is that they are thrown into it in crisis mode — such as when a parent’s health suddenly declines — and are completely unprepared to deal with the day-to-day logistics of their sibling’s condition.
“I am surprised that a lot of the information you would expect to flow down from parents to siblings, doesn’t flow down,” said Katie Arnold, executive director of the Sibling Leadership Network (siblingleadership.org), a national nonprofit that advocates for the interests of siblings through policy and peer support groups.
It helps if families start a dialogue early to get everyone on the same page about future caregiving plans, from special-needs trusts to medication schedules to guardianship decisions, Arnold said. Many parents are reluctant to have that conversation because they don’t want to burden the siblings with such worries, but often it relieves worry among the “ultimate sandwich generation” anxious about juggling their own kids, aging parents and a disabled sibling.
HOW PARENTS CAN HELP
What can parents of special-needs kids do to nurture their typically developing siblings? Vanderbilt University Prof. Julie Lounds Taylor offered some advice.
• Get them involved in Sibshops or other sibling support groups where they can spend time with other kids who have had similar experiences. There are 400 Sibshops in eight countries. (Go to siblingsupport.org.)
• Find ways to mitigate stress in the household generally, such as practicing mindfulness.
• Spend one-on-one time with the siblings doing things that have nothing to do with the disabled child.
• Have ongoing conversations at different life stages about how involved the sibling wants to be in the caretaking of the disabled person.