On learning that a 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 this enormous challenge. One of the first reactions is 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?”
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 I 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?”
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. It is extremely hard to be forced to rely on the judgments, opinions, and recommendations of others.
Rejection is another reaction that parents experience. Rejection can be directed toward the child or 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.
During this period of time when so many different feelings can flood the mind and heart, there is no way to measure how intensely a parent may experience this constellation of emotions.
Not all parents go through these stages, but it is important for parents to identify with all of the potentially troublesome feelings that can arise, so that they will know that they are not alone.
There are many constructive actions that you can take immediately, and there are many sources of help, communication, and reassurance.
- Seek Information
The important thing is that you request accurate information. Don’t be afraid to ask questions, because asking questions will be your first step in beginning to understand more about your child.
Learning how to formulate questions is an art that will make life a lot easier for you in the future. A good method is to write down your questions before entering appointments or meetings, and to write down further questions as you think of them during the meeting. Get written copies of all documentation from physicians, teachers, and therapists regarding your child.
- Find Programs for Your Child
Even for those living in isolated areas of the country, assistance is available to help you with whatever problems you are having. Your state’s Parent Training and Information Center can connect you with folks who can help you get started in gaining the information and assistance you need. While finding programs for your child with a disability, keep in mind that programs are also available for the rest of your family.
- Talk with Your Mate, Family, and Significant Others
Over the years, it is noticed that many parents don’t communicate their feelings regarding the problems their children have. One spouse is often concerned about not being a source of strength for the other mate. The more couples can communicate at difficult times like these, the greater their collective strength. Understand that you each approach your roles as parents differently. If there are other children, talk with them, too. Be aware of their needs. For many people, the temptation to close up emotionally is great at this point, but it can be so beneficial to have reliable friends and relatives who can help to carry the emotional burden.
- Keep Daily Routines as Normal as Possible
A parent once said, “When a problem arises and you don’t know what to do, then you do whatever it was that you were going to do anyway.” Practicing this habit seems to produce some normalcy and consistency when life becomes hectic.
- Remember That This is Your Child
This person is your child, first and foremost. Your child’s development may be different from that of other children, but this does not make your child less valuable, less human, less important, or in less need of your love and parenting. Love and enjoy your child. The child comes first; the disability comes second. If you can relax and take the positive steps just outlined, one at a time, you will do the best you can, your child will benefit, and you can look forward to the future with hope.
- Recognize That You Are Not Alone
The feeling of isolation at the time of diagnosis is almost universal among parents. Feelings of bitterness and anger are inevitable when you realize that you must revise the hopes and dreams you originally had for your child. It is very valuable to recognize your anger and to learn to let go of it. You may need outside help to do this. It may not feel like it, but life will get better and the day will come when you will feel positive again. By acknowledging and working through your negative feelings, you will be better equipped to meet new challenges, and bitterness and anger will no longer drain your energies and initiative. It helps to know that these feelings have been experienced by many, many others, that understanding and constructive help are available to you and your child, and that you are not alone.