Setting expectations for children with 22q.11

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As parents we often struggled with what were appropriate expectations for our son with 22q.11 Deletion Syndrome. Expectations are a double-edged sword. The problem with expectations for a child with a disability, is that it is difficult to find the right balance between motivating your child to achieve the best they can, and setting too high expectations that can lead to discouragement and anxiety in the child, and heartache and frustration in the parent.

In setting expectations, it is tempting to compare your child with other 22Q children. It is logical to stray down that path because since these children share the same genetic accident, it makes sense to expect that their lives will follow the same trajectory with similar abilities and achievements. Nothing could be farther from the truth. Though 22q.11 children may share the same genotype (genetic makeup), the phenotype (actual symptoms, manifestations) can be drastically different. In fact from what I’ve seen so far, as the mother of a child with 22q.11 Deletion Syndrome, is that there is more divergence in the problems and achievements than similarities. Each child is unique with their own set of strengths and weaknesses. What is physically or academically possible for one child is not within the realm of possibilities for another child. Your child may not achieve the same successes and milestones as that other child in your neighborhood or on the internet with the Deletion. A parent might become discouraged, wondering if there was something they did wrong or could have done better. It is nobody’s fault. You can’t blame yourself for being a bad parent; you can’t blame the therapists, teachers, or the doctors. Even though your child has the same Deletion, he or she is who she is.

Setting reasonable expectations for our son has always been a struggle and a moving target. What we have learned though is to set high expectations for ourselves to learn our son’s unique set of strengths and weaknesses, to listen carefully to his heart’s leanings and to love him unconditionally

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