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  • Guidelines for Parents

  • Brothers and Sisters of Children with Disabilities

    When a child is diagnosed with a serious medical problem or disability, all members of the child's family are affected. Siblings can feel confused, worried and scared. They may miss their brother or sister and feel isolated from their parents who are trying to take care of the child. They may feel some jealousy or resentment because the child receives extra attention from family, doctors and teachers.

    Despite all the challenges, brothers and sisters can adapt very well with the right kind of guidance. They can learn to be caring and independent. They can learn to appreciate their families' and their own health.

    Families often have questions about how to help their children adapt in the best way. What follows is an outline of some of the common concerns for brothers and sisters, as well as some guidelines to keep in mind as you balance the needs of all the children in your family.

    • Informing Brothers and Sisters
      Like parents, siblings need at least some basic information about their brother's or sister's illness. They will want to know its name, "how you get it," if it's "catching," and how it is treated. Provide simple explanations of the illness and treatment. Encourage siblings to ask questions and try to answer siblings' questions calmly. Remember that if you do not provide them with information and explanations, siblings will invent their own explanations. Sometimes, their own explanations can be very wrong and even harmful (for example, believing they caused the child's illness). If you have trouble finding the right words, there are many books about different types of illnesses written especially for children.
    • Fair Treatment and Expectations
      Sometimes siblings will complain that more is expected of them because of their brother or sister. Other brothers and sisters feel good knowing that they are being helpful by doing extra chores. Children need to be treated fairly. Try to give them privileges and responsibilities that are right for their age and ability. Try to neither overburden nor indulge siblings to "make up" for their brother's or sister's problems. Appreciate any of their extra efforts or sacrifices.
    • Expressing Feelings
      One major way siblings learn to express their feelings and share their thoughts is by watching how you express your feelings and deal with emotional situations. Become aware of and talk about your own feelings. Let your children know that you are ready to listen when they are ready to talk. When you speak honestly about your own experiences and feelings, and try to calmly listen to your children's questions and comments, your children will learn to come to you when they have questions or worries.
    • Individuality
      All children like to feel they are unique and loved by their family for themselves. It is easy for siblings' interests and talents to be overshadowed by their brother's or sister's special needs. One of your jobs as a parent will be to encourage siblings to develop their own friendships, talents, and experiences separate from those of their brother or sister.
    • Family Separations
      When a child's illness or treatment requires frequent doctor's visits or hospitalizations, siblings may need to remain in the care of other family members. It is important to explain the reason for their separation from their parents and brother or sister and to maintain care in their own home when possible. Siblings will feel less isolated if regular contact with the family is maintained through phone calls, notes and visits. Often, it helps siblings to know that should they ever be ill or need your help you would be right at their side as well.
    • Talking with Other Siblings
      Few brothers and sisters know other children in situations similar to their own. They may feel that none of their friends truly understand what is going on in their home. They may feel that other children will tease them or not want to become their friends due to their brother's or sister's illness. Meeting other children who have shared similar positive and negative experiences provides siblings with an opportunity to learn that they are not alone. Talking with other siblings also helps them to understand why their own parents may be acting as they are.

    Where to Go From Here

    It is important to remember that every child is unique and no two families are exactly the same. Like their parents, siblings cope and adapt better to their brother's or sister's illness when they have information, support from their families, and the opportunity to speak with other people who have had similar experiences.

    Many services are available at Rhode Island Hospital/ Hasbro Children's Hospital to address the needs of brothers and sisters, including the hospital's SibLink Program.

    • Our library contains many books written especially for children to explain various illnesses and disabilities.
    • Counselors are available to speak to on an individual basis when needed.
    • In addition, sibling groups are available for both young (4- to 7-year-old) and older (8- to 12-year-old) children whose brothers or sisters have a wide variety of special needs. These groups are designed to be educational, supportive and fun. Parents also meet together to focus more on brothers and sisters and share their experiences.

    To learn more about any of the support services available for siblings, please call Debra Lobato, PhD, department of child and family psychiatry at 401-444-8945. All questions and concerns are welcome.