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 judgements, 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 any 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
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 realise it today, but there may come a time in your life when you will find that having a daughter 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 mental retardation.
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. All over the United States and over the world, there are Parent-Helping-Parent Programs. The National Information Center for Children and Youth with Disabilities (NICHCY) has listings of parent groups that will reach out and help you. If you cannot find your local parent organization, write to NICHCY to get that local information.
Talk With Your Mate, 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. 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 may be a good friend or a counsellor. Go to those who have been a strength before in your life. Find the new sources that you need now.
A very fine counsellor once gave me a recipe for living through a crisis: “Each morning, when you arise, recognise 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 counselling is warranted; if you feel that this might help you, do not be reluctant to seek this avenue of assistance.
to be continued…