Siblings of a child diagnosed with Genetic Sucrase-Isomaltase Deficiency (GSID) may experience negative emotions. Here are some of the emotions that may arise and suggestions for ways that parents might tackle them.
- Feeling left out or jealous. Parents may inevitably focus their energies on the child with GSID with the result that other children in the home have to deal with parents being less available, both emotionally and practically. This is especially true at the time of diagnosis since a GSID diet can be difficult to figure out and incorporate into the rest of the family’s routine. Be extra aware of the importance of spending time with all your children and making them a part of the whole GSID process to ensure that all of them feel important and loved.
- Resentment or bitterness. Siblings may feel that there is a “special” relationship between the child with GSID and the parents because of the time spent focusing on the GSID diet and routine. Make extra efforts to spend quality time with all children in the household on a regular basis. Be sure and send the message that a diagnosis of GSID does not put one child above or below the others. For siblings not affected by GSID, try to engage in activities that are meaningful to that child whether it be reading a book together, playing sports together, or going out for a treat.
- A sense of guilt. Why him and not me? Siblings may also feel guilty if they ever have bad feelings toward the child with GSID. Allow the siblings to talk through their emotions, while offering emotional support.
- Anger at the situation. Why us? Why our family? It is not fair. Reassure your child that this is normal and help them deal with it effectively. Help the sibling feel angry at the disorder, not at their brother or sister.
- Embarrassment when others notice the different diet and symptoms of the child affected by GSID. The child with GSID eats differently from the other children, sometimes bringing unwanted attention to the family. Other children may tease a child with GSID, which could bring embarrassment to the non-GSID sibling. Help the sibling learn how to effectively deal with this embarrassment. Counseling or support groups for families dealing with chronic disorders are available in some areas.
As part of the big picture, allow siblings to take turns making typical family choices, such as TV programs or what the family may do for an outing. Additionally, a sibling who does not have GSID should not be required to adhere to a restricted diet or be penalized because another child in the family has GSID. However, it can be beneficial to create at least one family meal with as much common ground as possible, so the child with GSID feels included at family mealtimes. Maintaining a sense of fairness and understanding engages all the children to support one another. Accepting human differences and limitations while celebrating strengths with compassion is a life lesson for all.
The positive aspect of having a family member with a chronic condition allows the non-GSID siblings to have opportunities to develop increased empathy, adaptability, responsibility, and problem-solving skills. These are all desirable traits that could be highlighted to a sibling who is having a hard time dealing with the realities of GSID. Involve the GSID child and affected siblings in creating family goals and reassessing them periodically. The goal should be for GSID to bring the family closer together, not tear it apart.