Having difficult conversations - this resource has been developed for childhood dementia, which is a life-limiting condition. But, in the absence of resources specifically for our community, many of the conversation starters, responses and approaches could also help parents and caregivers of children with DEE-SWAS, EE-SWAS, ESES, CSWS and LKS communicate with family, friends, healthcare providers and even strangers. This includes telling people about the diagnosis, self-care in conversations and managing changing relationships and expectations with family and friends.
They Called It Anxiety. They Were Wrong - Lindsay Reynolds explores the difference between anxiety and the heightened awareness that can develop through ongoing care for a child whose health and life has depended on noticing subtle changes. The author describes how years of accurately recognising serious medical deterioration were repeatedly dismissed as anxiety, even when those instincts later proved to be correct. Rather than seeing this constant vigilance as a disorder, she suggests it is an understandable adaptation born from responsibility, lived experience and the reality that caregivers are often the first to recognise when something is wrong.