You are not Alone

Includes: Common Reactions; Seek Assistance; Talk with Your Mate; Rely on Positive Sources; Take One Day at a Time; Learn Terminology; Seek Information; Do Not Be Intimidated; Show Emotion; Bitterness and Anger; Avoid Pity; Avoid Judgments; Daily Routines; Remember Your Child; Recognize You Are Not Alone.

If you have recently learned that your child is developmentally delayed or has a handicapping condition, which either is or is not 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 handicap, 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 a parent through this period of trauma. That is what this paper 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.

Common Reactions

On learning that their child may have a handicap, 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 feelings of grief and inexplicable loss that one does not know how to explain, nor how to deal with.

Fear is another immediate response. People often fear the unknown more than they fear the known. Having the complete diagnosis and 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 that 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 handicapped persons one has known. Sometimes there is guilt over some slight committed years before toward a handicapped person. 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 and 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 and concern about whether the parents themselves have caused the problem: "Did I do something to cause this? Am I being punished for having done this? 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 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 handicap.

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 a 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 handicap.

Powerlessness to change what is happening is very difficult to accept. You cannot change the fact that your child is handicapped, 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. Compounding the problem is that these others are often strangers with whom no bond of trust has yet been established.

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 parents experience. Rejection can be directed toward the child 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 every one of 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 an take immediately, and there are many sources of help, communication, and reassurance.

Seek the Assistance of Another Parent

There was a parent who helped me. Twenty-two hours after my own child's diagnosis, he made a statement that I have never forgotten: "You may not realize it today, but there may come a time in your life when you will find that having a daughter with a handicap is a blessing." I can remember being puzzled by these words, which were nonetheless an invaluable gift that lit the first light of hope for me. This parent spoke of hope for the future. He assured me that there would be programs, there would be progress, and there would be help of many kinds and from many sources. And he was the father of a retarded boy.

My first recommendation is to try to find another parent of a handicapped child, preferably one who has chosen to be a parent helper, and seek his or her assistance. All over the United States and over the world, there are Parent-Helping-Parent Programs.

Talk with Your Mate

Over the years, I have discovered 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.

If there are other children, talk with them, too. Be aware of their needs. If you are not emotionally capable of talking with your children or seeing to their emotional needs at this time, identify others within your family structure who can establish a special communicative bond with them. Talk with significant others in your life -- your best friend, your own parents. 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.

Rely on Positive Sources in Your Life

One positive source of strength and wisdom might be your minister, priest, or rabbi. Another might be a good friend or a counselor. Go to those who have been a strength before in your life. Find the new sources that you need now.

A very fine counselor once gave me a recipe for living through a crisis: "Each morning, when you arise, recognize your powerlessness over the situation at hand, turn this problem over to God, as you understand Him, and begin your day."

Whenever your feelings are painful, you must reach out and contact someone. Call or write or get into your car and contact a real person who will talk with you and share that pain. Pain divided is not nearly so hard to bear as is pain in isolation. Sometimes professional counseling is warranted; if you feel that this might help you, do not be reluctant to seek this avenue of assistance.

Take One Day at a Time

Fears of the future can immobilize one. Living with the reality of the day which is at hand is made more manageable if we throw out the "what if's" and "what then's" of the future. Good things continue to happen each day. Take time to "smell the roses."

Learn the Terminology

When you are introduced to new terminology, you should not be hesitant to ask what it means. Whenever someone uses a word that you don't understand, stop the conversation for a minute and ask the person to explain the meaning.

Seek Information

Some parents seek virtually "tons" of information; others are not so persistent. The important thing is that you request accurate information. You should not be afraid to ask 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 question as you think of them during the meeting. Get written copies of all documentation from physicians, teachers and therapists regarding your child. It is a good idea to buy a three ring notebook which to save all information that is given to you. In the future, there will be many uses for information that you have recorded and filed; keep it in a safe place. Again, remember always to ask for copies of evaluations, diagnostic reports, and progress reports.

Do Not Be Intimidated

Many parents feel inadequate in the presence of people from the medical or educational professions because of their credentials. Do not be intimidated by the educational backgrounds of these and other personnel who may be involved in treating or helping your child. You do not have to apologize for wanting to know what is occurring. Do not be concerned that you are being a bother or are asking too many questions. Remember, this is your child, and the situation has a profound effect on your life and on your child's future. Therefore, it is important that you learn as much as you can about your situation.

Do Not Be Afraid to Show Emotion

So many parents, especially Dads, repress their emotions because they believe it to be a sign of weakness to let people know how badly they are feeling. The strongest fathers of handicapped children whom I know are not afraid to show their emotions. They understand that revealing feelings does not diminish one's strength.

Learn to Deal with Bitterness and Anger

Ultimately, bitterness and anger will hurt you a great deal more than they will those toward whom the anger is directed. It is very valuable to be able to recognize your anger and then let go of it. It is understandable that parents will be bitter and angry and disappointed to learn that their child has a serious problem. When you realize that these negative responses tend to hurt you and make you less effective with your child, you can decide to do something about them. Life is better when you are feeling positive. You will be better equipped to meet these new challenges when bitter feelings are no longer draining your energies and initiative.

Avoid Pity

Self-pity, the experience of pity from others, or pity for your child are actually disabling. Pity is not what is needed. Empathy, which is the ability to feel with another person, is the attitude to be encouraged.

Avoid Judgments

During this period, parents may become judgmental about the way people are reacting toward them or toward their child. Many people's reactions to serious problems are based on a lack of understanding, fear of knowing what to say, or fear of the unknown. Therefore, others may sometimes react inappropriately, but you need not use too much energy in being concerned over those who are not able to respond in ways that you might prefer.

Keep Daily Routines as Normal as Possible

My mother once told me, "When a problem arises and you don't know what to do, then 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. Granted, 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 less in need of your love and parenting. Love and enjoy your child. The child comes first; the handicapping condition is 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 a universal feeling among parents. In this paper, there are many recommendations to help diminish those feelings of separateness and isolation. You can diminish these feelings by recognizing that they 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.