Caring for a child, whether born with the disability/illness or acquired during childhood, changes your expectations as a parent. Many parents can talk of the joy and sorrow of raising a child with a disability to illness - the joy of the growing relationship between parent and child and the sorrow of dealing with reactions of others to your child.
Many issues may arise that are unique to parents caring for a child with a disability or illness. First, the emotional roller coaster of the diagnosis, injury, and future health and disability of your child may be overwhelming. How do I deal with the emotional side of caregiving along the journey?
Second, many parents identify as parents first and not as a ‘caregiver.’ “She is my daughter – I am her mother.” While parenting is about caring for your child, a parent of a child with a disability or illness sometimes means more reliance on the parents beyond what other parents of children without a disability may experience. Working with the health system school system, and community may take more time and invest on the part of you as a parent of a child with a disability or illness. Some questions you may have are how do I respond to other reactions to my child? What happens to my child when they turn 18? How do I work with all the different players in my child’s life? How does my child’s disability impact on other members of the family?
While these issues may be unique to parents of children with disability or illness, other issues are similar to all caregivers. You are not alone! Check out the Caregiver Connect Guide and the parents of children discussion for more information.