You Are Not Alone
Today I want to talk about a special set of people. Lovely people that God sent to a few special parents. I am talking about children with special needs. When I see such children, I love them and play a lot with them. I hope this write up helps parents in dealing with the issues that come with having very special kids. This is not and can never be a curse. It can also happen to anybody anytime so please always show some love. If you are a parent with such a child, I would say welcome and keep up with the good work.
When parents learn about any difficulty or problem in their child's development, this information comes as a tremendous blow. The day a child is diagnosed as having a disability, The parents will be devastated. It feels like having a knife stuck in your heart. Ha... My precious baby has live threatening issues? While these descriptions may sound dramatic, they may not fully describe the many emotions that parents have when they receive any bad news about their child. It is normal for parents to have many different feelings at this time.
Denial, anger, fear, guilt, and confusion are common reactions. Because you are feeling so many emotions at one time, it may be hard to know what you may be feeling.
Many things can be done to help yourself 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 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 normal school? 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 than it possibly could 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 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?” I remember someone said to me that she was thinking that surely her 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. 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. 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. 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 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 the Assistance of Another Parent
A mother told me this; Mr Philip helped me a lot. Twenty-two hours after my own child’s diagnosis, he made a statement that I have never forgotten, he said: “madam, you may not realize it today, but there will come a time in your life when you will find that having a daughter or son with a disability 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 boy with Down Syndrome.
My first recommendation is to try to find another parent of a child with a disability, preferably one who has chosen to be a parent helper, and seek his or her assistance. Talk with Your Spouse, Family, and Significant Others. 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. Understand that you each approach your roles as parents differently. How you will feel and respond to this new challenge may not the same. Try to explain to each other how you feel; try to understand when you don’t see things the same way. 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.
Rely on Positive Sources in Your Life
One positive source of strength and wisdom might be your minister, priest, or spiritual father. Another may 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 pray to God then 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. Even though it may not seem possible, good things will continue to happen each day. Worrying about the future will only deplete your limited resources. You have enough to focus on; get through each day, one step at a time.
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 word.
Keep in Touch with Reality
To stay in touch with reality is to accept life the way it is. To stay in touch with reality is also to recognize that there are some things that we can change and other things that we cannot change. The task for all of us is learning which things we can change and then set about doing that.
Remember That Time Is on Your Side
Time heals many wounds. This does not mean that living with and raising a child who has problems will be easy, but it is fair to say that, as time passes, a great deal can be done to alleviate the problem. Therefore, time does help!
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. While finding programs for your child with a disability, keep in mind that programs are also available for the rest of your family.
Take Care of Yourself In times of stress, each person reacts in his or her own way. A few universal recommendations may help: Get sufficient rest; eat as well as you can; take time for yourself; reach out to others for emotional support.
Keep Daily Routines as Normal as Possible
Avoid Pity Self-pity, the experience of pity from others, or pity for your child is actually disabling. Pity is not what is needed. Empathy, which is the ability to feel with another person, is the attitude to be encouraged.
Decide How to Deal With Others
During this period, you may feel saddened by or angry about the way people are reacting to you or your child. Many people’s reactions to serious problems are caused by a lack of understanding, simply not knowing what to say, or fear of the unknown. Understand that many people don’t know how to behave when they see a child with differences, and they may react inappropriately. My mother once told me, “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. 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 in less need of your love and parenting.
Continue with this prayer, God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Time is on your side. Time heals many wounds. This does not mean that living with and raising a child who has problems will be easy. It is fair to say that as time passes, a great deal can and will be done to make your situation better than it is now. You will be touched with the coverage and resilience you see in your child and in those around you. Get involved in programs for you and your child. These programs help your child develop new skills and have experiences with other children. It also provides an opportunity for you to meet other parents. Take care of yourself. In times of stress, it is important to get enough rest, eat as healthy as you can, take time for yourself, and reach out to others for emotional support. Decide how you will deal with others. During this period, you may feel sad or angry about the way people are reacting to you and your child. Understand that many people do not know how to react when they see a child with differences. Think about and decide how you want to deal with stares or questions. Try not to spend too much energy being concerned about this just long enough to come up with a response that feels comfortable to you. Keep your daily routine as normal as possible. Having a routine helps to keep life feeling "normal," even when life gets hectic. Remember that this is your child. Love and enjoy your child. The child comes first, the disability comes second. If you can relax and take the positive steps described here, one at a time, you will be doing the best you can. Your child will benefit from your efforts.
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