Since I have become a parent of a child with complex medical and psychiatric needs, I have evolved into a different person. I have grown stronger and more accomplished. This is partly due to something that is never openly talked about. That is the amount of self-control I have had to develop and the emotional stress I have had to bear as a parent raising a child with mental illness.
Mental illness is an invisible disability. People don’t usually “see” it unless they are in your home and know your child. They are not there when your child is manic for days. When she does not sleep at all. They do not see when she purposely kicks her feet into the floor, falls onto furniture, or head-dives onto the floor. They do not see when she kicks, screams, or spits at you. They do not see that self-harming is a big concern, as is the safety of all other family members.
And if others do see it, they think it must be something I did to cause this behavior. Or they think that my child is just having a bad day. Neither of these things are true or helpful.
What most people see is that my child has a physical disability. They see that I must feed her through a feeding tube. This part I can manage. I would rather prepare a feed or change a poopy Pull-Up than worry about being kicked or bitten. Being constantly on guard to catch a flailing child who is going head first into the corner of the dresser is much more terrifying.
Deep down, my relationship with my complex child is difficult. I can care for her medical needs so much better than her psychiatric needs. Dealing with those takes a much heavier emotional toll on me, her, and the rest of the family.
It helps so much to have a support network. To have people I can talk to about my feelings. Even if it is just one close friend or therapist, it is so important to get emotional support when you are a parent of a child who has a mental illness.
During the COVID-19 pandemic, we asked parents of children with disabilities and special health care needs to share their tips and stories about caring for their children during difficult times.