The sibling of an individual with a FOXG1 mutation is going to face their own set of challenges. Having a brother or sister that requires so much attention can make it difficult to give them the attention they deserve and need. They are also often aware of the frailty of life much sooner as they see their parents worry about seizures, vomiting, aspiration, ER visits, surgeries, and they often become “parentized.” This means they take on the role of caring for their sibling as though they are the sibling’s parent rather than a brother/sister relationship. This, in turn, brings on a heightened anxiety regarding their sibling’s health. Your pediatrician should be a great source of information on treating anxiety, including healthy ways to cope and breathing techniques. Your pediatrician may also refer you to a child psychologist.
One easy way to help your own non-FOXG1 child is to set aside time just for them after your FOXG1 child is in bed, even if it’s assembling legos, reading a book together, watching a show, playing a game, or maybe a lunch date once in awhile. It doesn’t have to be anything grand, they just want your attention. Also, try to avoid telling them plans ahead of time so they’re not disappointed if they’re cancelled due to your FOX child’s needs.
On the plus side, there is rarely sibling rivalry! If anything, these kids become an advocate for their brother or sister at a very early age. They are often highly compassionate people, with empathy beyond that of their peers. As hard as it is, remember to give them time to be a child, and help them understand that they are not responsible for their sibling’s well-being.