Grieving for our child who had disabilities or complex needs

One of a series of leaflets published by The Compassionate Friends worked hard towards them gaining as much independence as was possible. We were glad to see any progress that they made, even if it might have taken them longer to acquire new skills or develop in other ways. We may find some comfort in remembering what brought them happiness. Managing to smile or sit up unaided might have been an achievement, or perhaps our child was able to attend school or eventually work independently. However big or small their achievements, whether it took a short or long time to achieve them, they are still special to us and worth celebrating. We may have photos of these moments, or we could choose to write about them, and so help preserve these precious memories. The changes brought about by our child’s death “My child was autistic. They had all sorts of rituals and routines to deal with daily life, and our day was structured around them. Now they have died, all of those things are gone, and life seems so aimless.” Depending on our child’s particular needs, we may find that the entire structure of our life has now changed, and we must find a new normality in the future. We might have spent more time than most parents caring for our child on an everyday basis, perhaps even into their adult years. This closeness makes their death very difficult to bear. Now there are so many hours to fill when we were once so busy. We may have come to know health, social workers and other support staff as friends through our regular visits to hospitals, clinics and day centres, and we now find ourselves without their support in our grief. The years of caring will