Toolkits & Research - CAREGIVING
Here is the good news - you are not alone and while there are a lot of gaps in the system of care - there is also some great research and work happening for caregivers of extraordinary children. A lot of support for caregivers of extraordinary children comes through disease or condition specific organizations (HERE and HERE are links to two amazing ones - as examples- that my family has benefitted from). They really help with getting up to speed on the specifics tied to what is making a child ill and how to navigate the medical intracies. And while those entities are a great support for the caregivers (and occasionally for the entire family or sick child) - its clear that caregivers and families of extraordinary children need much more in the way of support. There is a huge amount of work and learning to be done on how to integrate emotional and behavioral health into caregiving and coordinating care for the child who is ill while supporting the entire family. The need to balance whimsy and childhood magic with what can feel like unthinkable or overwhelming situations and decisions is an area ripe for creating new venues of support. These resources are a great starting place for framing some of those realities and needs.