Loss of a Child with Special Needs
Depending upon the extent of illness or disability, every moment of your day may have been determined by your child’s specific care needs. The family is often structured around the daily routine of caring for the child. Many parents take great joy and pride in their role as a parent of a special needs child. Suddenly that child is gone, and equilibrium of the family is even more disrupted. A parent may confront “what do I do now” if their identity was as caretaker. Siblings may or may not welcome the new time and attention their parent has for them. Many parents also express a loss of self-esteem as they report feeling special because of their unique bond and role in caring for the child. Unfortunately, there are also often comments from others that are unintentionally hurtful. Some may assume a parent is relieved not to have to care for the child anymore or question the quality of life for the child. There is also a loss of the community that has developed from the special services the child received and the network of parents with similar needs. Parents may struggle more with redefining who they are and the changes in their roles and relationships after a death of a child with special needs.
When our special needs child dies, we are faced with yet another transition. The work, the worry, the often-total commitment to that child suddenly ends. The loss is profound and once again we must redefine our life, adjust our psychological self and even our physical reality. Many suddenly find that nothing is the same anymore. There are no trips to doctors, therapy, school or day programs, no more special meal preparations or bath times. There is no longer a need to listen in your sleep for that child’s stirring or cough that may signal some distress that needs your attention. Suddenly all this is gone.
(The Compassionate Friends)
The pain of a family grieving the loss of a special-needs child may be best shared with and validated by someone who understands the unique lifestyle your family has led. We encourage you to explore resources in your area and online support groups for families. Many parents also report great comfort in staying connected to their special-needs network and finding meaning by giving back to their communities. We hope that you can find healing and meaning in the special life of your child.
Coping with the grief that follows the death of a special needs child