Working with Your Patient’s Family

This chapter offers specific tips for helping families navigate the complexity of family dynamics. We work very closely with our patient’s parents or partners and spouse to help them deal with the very common, difficult feelings and experiences such as anxiety, fragility, frustration, and confusion. With help in understanding this process, parents and professionals can prevent or minimize this from happening. Parents can be taught how to deal with their own frustrations, understand their limitations, and realize that their own family histories and dynamics will influence the expectation they have for their children. Parents can be shown the additional complicated impact these expectations will have on children with NVLD. Making the link between parental frustration and the message it gives their child can be very useful.