There are many ways to engage the family and ensure everyone is a team member in sharing wellness, health, and mutual responsibility for one another. A disease or disorder does not define any individual person. Everyone in the family unit matters equally, and time should be spent accordingly. During critical episodes, adjustments should be made for a medical crisis at hand, but returning to normal family day-to-day interaction and taking the focus off of CSID is important for keeping the family unified.
Parents/caregivers should maintain a date night or scheduled intentional time together. Single parents/caregivers should spend some time in activities that they find enjoyable and rejuvenating. Families should attend gatherings, events, or parties. Planning ahead and bringing alternate foods eliminates the feeling of being different, whether as an individual or as a family. The most successful families are those that move beyond seeing CSID as an intrusion and begin working together as a team to face the new realities of managing a chronic condition. Build on your family’s strengths to cope with this new stress.
Finding new ways to spend time together that are not food-centric can teach everyone that life is more about time spent with people. Fun events or holidays have more to do with the people present than the foods associated with them. Families can come up with many things they enjoy doing together without the central focus being food. Families can also initiate new food traditions with CSID-appropriate food items.
Some parents/caregivers find it difficult to discipline their child with CSID, often because they feel sadness for the child’s situation. Ultimately, children need clear boundaries and benefit from consistent expectations. Without appropriate limits, children can become overly dependent, have lower self-esteem, and eventually have behavioral or social problems. A child with CSID should abide by the same family rules as other children in the home. By enforcing standards of behavior for a child with CSID, a parent/caregiver is giving the child the message that the child can handle their situation well.