Fear is another immediate response. People often fear the unknown more than they fear the known. Having the complete diagnosis and some knowledge of the child’s future prospects can be easier than uncertainty.
Then there is guilt—guilt and concern about whether the parents themselves have caused the problem. “Did I do something to cause this? Am I being punished for something I have done? Did I take care of myself when I was pregnant?” For myself, I remember thinking that surely my daughter had slipped from the bed when she was very young and hit her head, or that perhaps one of her brothers or sisters had inadvertently let her drop and didn’t tell me. Much self-reproach and remorse can stem from questioning the causes of the disability.
Confusion also marks this traumatic period. As a result of not fully understanding what is happening and what will happen, confusion reveals itself in sleeplessness, inability to make decisions, and mental overload. In the midst of such trauma, information can seem garbled and distorted. You hear new words that you never heard before, terms that describe something that you cannot understand.
Powerlessness to change what is happening is very difficult to accept. You cannot change the fact that your child has a disability, yet parents want to feel competent and capable of handling their own life situations.
Disappointment that a child is not perfect poses a threat to many parents’ egos and a challenge to their value system. This jolt to previous expectations can create reluctance to accept one’s child as a valuable, developing person.
Rejection is another reaction that many parents experience. Rejection can be directed toward the child, toward the medical personnel, or toward other family members. One of the more serious forms of rejection, and not that uncommon, is a “death wish” for the child—a feeling that many parents report at their deepest points of depression.
Center for Parent Information and Resources (DOE)
A large resource library related to children with disabilities. Parent Centers in every state provide training to parents of children with disabilities. Lists local conferences, support groups, advocacy tips, and suggestions for finding schools and other local services; Department of Education, Office of Special Education.
Utah Parent Center
A non-profit organization that provides training, information, referral, and assistance to parents of children and youth with all disabilities including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities.
See all Family Support, General services providers (54) in our database.
See all Local Support Groups, General services providers (80) in our database.
See all National Support Groups, Disab/Diag services providers (48) in our database.
For other services related to this condition, browse our Services categories or search our database.