Suggestions for parents dealing with the emotional trauma of learning their child has a psychiatric, learning or other disability.
If you have recently learned that your child is developmentally delayed or has a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.
When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated — and so confused that I recall little else about those first days other than the heartbreak. Another parent described this event as a “black sack” being pulled down over her head, blocking her ability to hear, see, and think in normal ways. Another parent described the trauma as “having a knife stuck” in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ minds and hearts when they receive any bad news about their child.
Many things can be done to help yourself through this period of trauma. That is what this article is all about. In order to talk about some of the good things that can happen to alleviate the anxiety, let us first take a look at some of the reactions that occur.
On learning that their child may have a disability, most parents react in ways that have been shared by all parents before them who have also been faced with this disappointment and with this enormous challenge. One of the first reactions is that of denial — “This cannot be happening to me, to my child, to our family.” Denial rapidly merges with anger, which may be directed toward the medical personnel who were involved in providing the information about the child’s problem. Anger can also color communication between husband and wife or with grandparents or significant others in the family. Early on, it seems that the anger is so intense that it touches almost anyone, because it is triggered by the feelings of grief and inexplicable loss that one does not know how to explain or deal with.
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. In either case, however, fear of the future is a common emotion: “What is going to happen to this child when he is five years old, when he is twelve, when he is twenty-one? What is going to happen to this child when I am gone?” Then other questions arise: “Will he ever learn? Will he ever go to college? Will he or she have the capability of loving and living and laughing and doing all the things that we had planned?”
Other unknowns also inspire fear. Parents fear that the child’s condition will be the very worst it possibly could be. Over the years, I have spoken with so many parents who said that their first thoughts were totally bleak. One expects the worst. Memories return of persons with disabilities one has known. Sometimes there is guilt over some slight committed years before toward a person with a disability. There is also fear of society’s rejection, fears about how brothers and sisters will be affected, questions as to whether there will be any more brothers or sisters in this family, and concerns about whether the husband or wife will love this child. These fears can almost immobilize some parents.
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 have done? Did I take care of myself when I was pregnant? Did my wife take good enough care of herself when she 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 orsisters had inadvertently let her drop and didn’t tell me. Much self-reproach and remorse can stem from questioning the causes of the disability.
Guilt feelings may also be manifested in spiritual and religious interpretations of blame and punishment. When they cry, “Why me?” or “Why my child?”, many parents are also saying, “Why has God done this to me?” How often have we raised our eyes to heaven and asked: “What did I ever do to deserve this?” One young mother said, “I feel so guilty because all my life I had never had a hardship and now God has decided to give me a hardship.”
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. You want to find out what it is all about, yet it seems that you cannot make sense of all the information you are receiving. Often parents are just not on the same wavelength as the person who is trying to communicate with them about their child’s disability.
to be continued…