“Strong empathic talk” about the sibling’s feelings has been shown to be one of the best ways to build all positive sibling relationships starting in infancy. Acknowledging jealousy and providing individual attention come next. When things aren’t “fair” (which they often cannot be), token fairness helps. For the sake of the sibling, a child with special needs should still have “chores” (such as pulling sheets out of the dryer) and consequences for misbehavior (such as time out), whether the child understands or not.
At their own health supervision visit, I ask siblings about their relationship with the child with special needs, what is fun for them together and what is the hardest part about living with them. The aim is to assess their attitudes and also give them permission to complain. I almost always do this interview with the parents present, giving them a chance to hear those views (although private time may be needed as well). It often is hard for parents and the child himself or herself to express negative feelings because the special needs situation was no one’s fault and everyone has to work hard to be optimistic and to cope. You can then model a sympathetic ear plus assist in coming up with solutions, when possible. The interventions I suggest are often “tokens” to address the family dynamics rather than solutions to the problem. For example, a teen sibling of a child with autism under my care showed depression. Although for fun he played video games with his brother with autism, the hardest part was the lack of an age-appropriate social life. He had to make breakfast and get the special needs sibling off to school every morning as well as care for him after school while their single mother worked. We discussed this, and their mother determined to pay the teen for child care plus loosen her restrictions on his bedtime so that he could go out with friends.
Simply allowing the sibling expression that it can be hard is helpful. Many times stress is denied. To open up discussion, ask such questions as, “How is it having friends over?” or “Do you get enough time with your mom, just you and her?” or “Are there things you miss out on because you have a sister with special needs?”. These same topics are relevant for the parents themselves, too. Protecting the sibling’s privacy during playdates, having 10 minutes daily alone with the sibling to talk or play cards, or setting some family savings goals for the missing privileges are possible solutions that parents could implement. I suggest regular family meetings at home to ensure that these discussions occur and that the solutions are maintained or refined over time.
There are services available for some special needs conditions that are helpful in supporting siblings. Wraparound services may include respite care to allow family vacations, babysitters with needed skills, or payment for summer camp for children with special needs. Summer camps specific to siblings of children with special needs exist as well.
When free services are not available or finances are tight, you can encourage families to think outside the box. Maybe they can trade child care with another family with a child with special needs – each taking both kids for weekly breaks for the other family. Both condition-specific and general parent support groups often are helpful for coming up with ideas and making friendships that can lead to this kind of exchange.
When parents do not have a sitter they trust to manage care for the child with special needs, I often suggest getting a less-skilled (and less expensive) sitter (an 11-year old-works) to mind the child, but then the parent can stay in the house or yard to allow for individual time with the sibling without having to worry. (This is a good tip for time alone for spouses, too!)
The long-term questions that older siblings will have are best addressed by making a plan with a financial adviser. Organizations such as the Arc of the United States (www.thearc.org) and lawyers specializing in disabilities can provide this kind of advice. A trust fund, an up-to-date will, and a written plan for care giving long term are important to reduce worries parents have and can be communicated to the siblings when the time is right.
Dr. Howard is assistant professor of pediatrics at the Johns Hopkins University, Baltimore, and creator of CHADIS (www.CHADIS.com). She had no other relevant disclosures. Dr. Howard’s contribution to this publication was as a paid expert to Frontline.