With all of its chaotic ups and downs, joys and sorrows, love and rivalry, family life (referred to by Anthony Quinn in Zorba the Greek as “the whole catastrophe”) can be a challenge for everyone. Special needs siblings experience both additional enrichment and extra challenges.
As a parent, or a concerned provider, you know how important these siblings are. They are the family members who will probably be involved with their brothers and sisters longer than anyone, even their parents. What are the extra challenges for siblings of children with special needs, and how can we best support them?
Emotional Balance
The most effective way to address emotionally charged issues is with open communication, honesty, and warmth. Emotional turmoil related to developmentally delayed brothers or sisters can be overwhelming for some siblings. Parents who share their own feelings in appropriate ways, and listen and respond without judgment create a loving atmosphere. Confidence can then prevail over turmoil and scary fantasy. For serious problems the best answer might be family or individual therapy.
Some families hold weekly “family meetings” to give everyone a chance to check in for a dose of support and encouragement. Another way to allay negative feelings is simply with information. Parents can help by explaining the origins and consequences of a particular condition. Siblings need to understand why expectations for the “special” child may be different from theirs.
The Sibling Support Project (SPP) is a national organization dedicated to brothers and sisters of people with special health and developmental needs. Two of their books are good resources for young readers: Living with a Brother or Sister with Special Needs: A Book for Sibs, by Donald Meyer and Patricia Vadasy and Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs, edited by Donald Meyer.
Overcoming Isolation
Siblings can recognize the universal dimensions of their own experiences most easily in contact with others like themselves. Uncomfortable feelings like anger, fear, or jealousy are sometimes easier to voice outside the family. The SPP’s “Sibshops” are support groups that provide sharing and recreational opportunities for sibs. Its listservs, SibNet and SibKids, connect brothers and sisters from all over the world via the internet.
The “family hero.” Some siblings become “perfect” children to compensate for the problems their parents face with the “special” child. They deprive themselves of healthy expressions of separation and other childhood experiences by becoming ultra responsible. Parents alert for these signs of pseudo adulthood will encourage siblings in the full range of independent activities they need to support their own growth.
Everybody Counts
Parents whose energy is consumed meeting the demands of the “special” child may be unaware of silent suffering in their other children. Hard as it may be, the answer is to find time. After a period of intense preoccupation with your child with special needs, schedule a lunch out or a hike, some kind of special one-on-one time with your other children. They will enjoy the rare pleasure of your undivided attention. Talk about how much you miss them and value your intimate connection with them. Take advantage of this time to listen to their concerns.
Sibling Relationships
The child with special needs may behave in ways that lack human relatedness, frustrating a sibling who wants his brother or sister to be a pal. It’s possible to coach a sibling in how to play with the brother or sister. Even a very young child can learn the importance of eye contact, simple directions, rewarding good behavior, and consistency.
As difficult interactions change into pleasurable ones, the two new playmates experience pride in themselves and affection for each other, and mom gets a break! Better rapport between the siblings benefits everyone.
Getting Help
Finding time for the whole family, work, and yourself is easier to do with help. We need to ensure that agencies include sibs in their family-centered services, offer respite care, and sponsor parent support groups. Beyond professional help, families need to draw boldly on every resource they can identify – church or synagogue, grandparents, friends, neighbors, other parents of “special” kids. Helping each other in times of need is part of building good communities. Here again, everyone benefits.
Still Looking for Answers?
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Resources
Books
Meyer, Donald, et al. Living with a Brother or Sister with Special Needs: A Book for Sibs. University of Washington Press, 1996.
Meyer, Donald. Views from Our Shoes: Growing Up with a Brother or Sister with Special Needs. Woodbine House, 1997.
