TOWN TOPICS, PRINCETON, N.J., WEDNESDAY, AUGUST 14, 2013 • 20
BACK TO SCHOOL Experts, Organizations, and Schools Offer Help To Siblings of Disabled Children Facing Challenges
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lmost six million children in the United States are living with disabilities. Most of these children have brothers and sisters. The effect of the disability reaches every family member, influences many, if not most, aspects of family life, and can have a deep impact
on the child’s siblings. At any given time, a brother or sister can be embarrassed, annoyed, upset, angry, sorry, understanding, compas sionate, or even proud of the special needs child’s behavior. Depending on the type and extent of the disability, siblings may feel left out and resent the extra
attention the disabled child needs and receives from their parents. Uncertainty, confusion, and frustration about what to expect from their sibling’s moods and attitudes can also lead to anxiety and worry. Sometimes, siblings will act out, displaying their own negative behavior. In contrast, some children try to be “perfect�, somehow trying to lessen their parents’ stress. The pressure on parents to balance the needs of their normally-developing children with those of their special needs child can be enormous. Even when they try their best to be as evenhanded as possible with all their kids, they are often surprised to learn later what their children are really thinking. A Princeton resident and mother of two grown children, one of whom is autistic, had such an experience. “My son was diagnosed with autism at three years old. My daughter was six and a half, and we told her about his diagnosis and that he needed to learn differently than she, and that he needed special therapy.� “Sibling Day� “His limited speech resulted in difficulty communicating his wants and needs, and he had also lost the ability to point,� she explains. “He had to be taught to point again to show us what he wanted. There were many tantrums, but he was always very lovable and did not avoid touch.� At four, he was able to attend the Eden Institute, and this made a big difference, she adds. “This helped our
situation at home immensely, as they provided us with support, training, and education. They even provided ‘Sibling Day’ for our daughter and other siblings. It included a sibling support group as well as giving them a chance to work with the autistic sibling.� She explains that outwardly her daughter seemed to accept the situation. “She did not act out or show resentment. We are friends with other families with autistic kids so she knew that she was not the only sibling dealing with it. She was also extremely involved in watching his therapy. Of course, he needed more attention, but we made sure to take our daughter on special outings just for her.� Years later, the mother was surprised when her now grown daughter shared her feelings and concerns about her brother. “We found out that even at a young age, our daughter felt that she would have to be responsible for him when he got older, even though we had told her not to be concerned about that.� This is not unusual, points out Princeton resident and psychologist Terri David, PhD. “As children age into adolescence and wider awareness and approaching adulthood, they may begin to worry about having to care for their disabled sibling later in life.� A variety of factors can affect the siblings’ attitude toward the special needs child. These include the age of the siblings, the number of children in the family, personality traits, and parental guidance, notes Dr. David. Emotional Reactions “You nger children are more prone to direct emo-
tional reactions, unfiltered by intellec t,� she adds. “They may include resentment over being replaced as the focus of the parents’ attention, especially if the disabled child requires lots of it. Older children, as they learn more about the world around them, may become more protective of their disabled sibling, particularly if they see the sibling bullied in school or the neighborhood. Yet that same feeling of protectiveness may not linger inside the home. “Another factor is when the siblings are older or younger than the disabled sibling. If older, they may resent being displaced as the ‘apple of their parents’ eye’, which is often the case, even with a non-disabled sibling, but is exacerbated by the additional attention demanded by the needs of the disability. “If the sibling is younger, there may still be that resentment, not of being replaced, as that is not the issue, just not of getting the attention needed by that child,� continues Dr. David. “As a school-age child, there may be embarrassment at being connected to the disabled sibling, and sometimes inner shame at the embarrassment.� The personalities of the siblings is another component, she adds. “Some children adjust more easily to obstacles, change, etc., while some find this quite difficult. Some children are inherently anxious, others not. Another factor is the number of siblings in the family. If there are only two — the disabled sibling and the non-disabled — the latter will tend to shoulder a large burden, both emotionally and practically. But if there are more than two children, that burden is shared, and
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the siblings have a support system within the family.� No less a vital factor is the parents’ influence,� she continues. “The degree to which the parent helps or hinders the adaptation of the nondisabled sibling is itself dependent upon the parent’s own personality, level of education, emotional wellbeing, etc. To the degree that the parents themselves have accepted the disabled sibling and understand his/ her needs, those parents will be better equipped to meet the needs of their other children. “Children have great powers of understanding if allowed to express them, which requires first that they have the conditions and needs of their sibling explained to them, in age-based terms, in a calm manner, while also discussing the effect on the sibling, not negating it. Allowing the child permission to have emotional reactions and to express them appropriately to their parents is important.� Family Dinner Sue DiDonato, interim special education director of the Robbinsville School District, agrees that the parents’ role is crucial. “Generally speaking, I believe that most siblings react with empathy and compassion, which may be directly related to how the parents handle the added pressure that they encounter in a child with disabilities.� Depending on the severity of the disability and other variables, the impact ranges from minimal to significant, continues Ms. DiDonato. “For some families, a simple family dinner in a restaurant or day at a theme park can be challenging. There are often financial and medical pressures as well.� Ms. DiDonato also points out that siblings may experience different emotions, such as guilt, sadness, anger, jealously, embarrassment, and even a heightened sense of responsibility. “Some children feel added pressure to be ‘perfect’ to avoid any added stress for their parents. “Most families work out these issues, as do other families when one child is very bright, or is a gifted athlete, or talented dancer, etc. However, in the case of siblings of special needs children, there is more specialized support available when ne e de d t hrough pr ivate therapists, psychologists, social workers, and school guidance counselors.� Some parents take a very active role in sharing their child’s (both the disabled and the non-disabled sibling(s)) experience with others. My Holly: A Story of A Brother’s Understanding and Acceptance was written by Julie Leavitt Wolfe, the mother of two children, Ryan and Sydney. Severely disabled when she suffered a stroke at the age of one, Sydney is now three years old. The book is dedicated Continued on Next Page