The reaction of parents and relatives in the diagnosis
The reactions of parents and relatives in the diagnosis of "Hunter syndrome" different. However, there are common factors observed in different families. The purpose of this article - to acquaint you with the typical reactions.
At first, it may be relieved,especially if parents feel that all is not well with their child, and are torn from doctor to doctor trying to find out what's wrong. It is clear that the diagnosis of "Hunter syndrome," no one wants, but for the very first time, parents can relax a little bit - because their child was diagnosed, and if so, it is clear in which direction it will be necessary to go further. Information - a great power, they argue, and often causes the child's discovery of the disease is holding one or another treatment, after which their child will be healthy.
Soon, however, comes the understanding that notso simple. With this treatment, to heal the child immediately, no. Most parents feel an overwhelming sense of desolation, and then go through all the stages of grief. Physiologist Ken Moses developed the theory of the grieving process experienced by parents of children with serious illnesses. Among the most intense feelings experienced by parents - is the loss of their dreams about what would be their child. Along with this comes the intense emotional period that is often misunderstood by parents and those around them. This will help them cope with the loss, to understand their feelings and reactions as the corresponding current situation around them. Next - is described by many parents experience when they learn to provide special needs of their child, as well as understanding and how to best meet those needs.
Loss of Dreams
When parents are expecting a baby, they dream, likethe child will grow up, who would be like, as will learn. Many do not even discuss their dreams with one another, although they assume that the other knows about them.
According to Dr. Moses, the main dream of allparents - children to live better than they do. Dr. Moses said, "the only thing a person can lose in life - it's a dream. You can not lose the past, you may lose only the future ... a dream, a fantasy, an illusion or imagination of the future. "
When parents mourn for the future, it isdream loss. This process has many parts, but it always starts with a bang, which produces the information provided by your doctor. And it is usually accompanied by a refutation of the correctness of the information provided.
It is a necessary part of the sorrow and needsconsidered as useful. Many parents do not want to admit that denied the existence of their child those or other disability. But looking back, they can see what they were doing and saying the same denial. Dr. Moses sees a refutation winning time required a person to find inner strength and external support in order to live with what happened.
Denial can manifest itself in many forms andlasts for a short time, and so for many years. It must be remembered that a person simply uses its mechanisms to get along with the current situation, and this process is normal, purposeful and productive.
Dr. Moses identifies four levels of denials, which are the most common:
- Parents may claim that their child harm. "It must be the doctor made a mistake" - is a common response. Some parents are looking for a second or third opinion.
- Parents can make a diagnosis, but to deny that this is a lifetime.
- Parents can receive and diagnosis, and that is for life, but to deny the impact of the disease on the child's life.
- Parents may deny their feelings. "Yes ... But there is no use to grieve for spilled milk."
It is important to remember that this is - a normal, useful reaction to the situation and they should be supported.
As the family has yet to be adapted,offer parents more specific information about the disease and its consequences, as well as on the available information and other resources. Collection of information is very helpful to parents to recover from the shock produced by the diagnosis, and to survive the stage of denial.
Another stage of grief - panic or anxiety. When parents understand that changes are taking place with a child not for the better, they may fall into a panic. They are very important questions such as "What am I going to do?" Or "How did he get an education and what awaits him in the future?"
Worry can be useful becauseIt helps mobilize and channel the energy required for internal and external changes required by the situation. Parents may feel frustrated or even inadequate, they are afraid of the unknown. Awareness of concern, the right to feel anxious, it may be useful for families dealing with this stage of grief.
It has been observed that in this reaction step sadnessto certain situations sometimes exaggerated as compared with the way a person might respond in a normal state. If a person has a tendency to come angry in any particular situation, it may become very angry over the grief process. Anger is probably the most common and the expected form. Parents can show anger at professionals who diagnosed their child, they are angry at their biological history or God, putting an unbearable burden on them.
Most often, however, irritability and angerIt focuses on the closest and most vulnerable - to family members. Minor events suddenly seem important and disastrous. During this stage of the process of grief it is extremely difficult to remain close and supportive of each other. Keep in mind that anger can be energized and feeling powerless, and in some situations beskontrolen.
Wine is often associated with the fact that we didour own lives. This forces us to go back to all the bad that we could have done. There may be a tendency to judge their own dignity and self.
Wine often takes the form of questions such as "whyI "or" I've done to deserve this "man asks -? why is there and where does this or that phenomenon, who controls our lives, and perhaps even our faith. Sometimes the answer to these questions is that some things have no explanation. It is sometimes difficult to accept. Families should be allowed to share these feelings with no evaluation.
Depression - is a central part of the core of sadness. We need to encourage parents to their stories of the oppressed feelings and acknowledge the need to take another look at their own expectations of themselves and others. When people are depressed, they often tearful, sometimes do not have any interest in everyday affairs. There may be physical symptoms - insomnia, or even disease. This is a normal feeling of sadness, only a very prolonged symptoms of depression are cause for concern.
Parents have many concerns. The main concern may be as follows. Damage harm a child's intelligence is so great, that they will never be able to love him. And, perhaps, anyone at all. Ken Moses wrote: "When you allow yourself to take a chance to have a dream, but it does not work. The fear is that the pain is so great that you never allow yourself to take risks to hope or dream. " The feeling of fear or division - this is the way in which parents can find the inner strength and courage to begin to love her child.
In this stage of the process of grief parents are beginning to see that the patient is a child like them and other children. "His eyes were blue, exactly like his father," or "he likes the same food as my other children."
Emotions become less intense, and members offamilies can give more energy daily challenges and joys. The family begins to admire her baby. They begin to develop new ways to pleasure each other.
Return sadness cycles
Those or other stages of grief can be returned in thosecertain moments. Major events, such as the start of pre-school education in kindergarten, or when the child reaches school age, puberty, growing up, and when a child is forced to leave the kindergarten or school, when parents are fired from their jobs - can cause parents grief reaction. Leave a child's birthday, a family gathering can also force parents to re-experience the loss of their dreams.
It is important to recognize that members of the same family mayupset in very different ways and pass through different stages of grief. Recognition of "coping" mechanisms for each family member and use them to help reduce stress, which can occur in the study of the diagnosis.
Emotional reactions to a child with the syndromeHunter intense and often confused with indignation and frustration, brought a burden of guilt mixed in with compassion, love and pain. Hunter syndrome may be the cause of the child's problem behavior. This, in turn, means that the parents of such a child living in a state of perpetual exhaustion, trying to manage a whole range of teachers, doctors and other professionals to maintain compliance with their families generally accepted notions of the family and at the same time to provide a specialized and constant care required sick child.
Passing through this difficult period, it is very importanthave hope. It is very important to communicate with their families, where there are similar problems, examine information about the disease and its accompanying aspects. Remember that the medicine does not stand still, develop new and develop existing methods of treatment, which leads to a better quality of life. Remember that you - are not alone.