Toolkit for Families of Children with Special Healthcare Needs - Epilepsy
Tool 4: All About Me
Those of us who have children with special healthcare needs want the world to know that our family members should not be defined solely by their diagnosis or disease. We have many stories to tell of what we believe is insensitive treatment by not only community members but by those who care for our children's medical needs. While we are aware of the many constraints our doctors work under, when we are rushed into and out of appointments with only the barest of attention paid to our children as whole people, we are discouraged that our children will not be truly known. Parent leaders at NICHQ led the way in creating what we call an All About Me document, a page or two of information about our children that describes the richness of the child's life in its entirety and beyond that child's diagnosis. The document can be written by the child himself or by one of her siblings; it can be a document created by the entire family with photos and drawings. We believe that it should be included in the child's Care Notebook as an essential document, updated as the child grows. We believe that it helps medical professionals and other caregivers to see the child with new eyes, as a person of integrity who lives a full life in her community.
Read ALL ABOUT ME: I AM SOPHIE
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