This morning Timmy's CAP-C case manager stopped by to drop off a belated birthday gift for Timmy, before she headed off to the hospital to undergo surgery to repair a torn rotator cuff in her shoulder.
This was such a wonderful gesture, being that buying gifts for her clients isn't something that she typically does. Because she feels that if for some reason (finances, illness), she is unable to purchase something for one of her clients it would be unfair to that person.
I guess like the majority of people in which Timmy has come in contact with, he has stolen her heart strings and wrapped them tightly around his little finger.
Timmy's amazing strength and willingness to fight and overcome illnesses and obstacles in his life, his ability to give love without a single spoken word or gesture, his personality, his bright smile that will light up any room and his contageous laughter is sure to steal the hearts of anyone.
Once Timmy's CAP-C case manager had left, Emily immediately volunteered to help Timmy open his present. By this time, it was time to put Emily on the school bus. So we promised that Timmy would wait til this afternoon to open his present, so that she could be there to help.
On Mondays and Wednesdays, Timmy and Emily arrive home from school about the same time (1:30-1:45PM). Today Timmy arrived home about 30 minute before Emily. Once Emily got home she immediately wanted to sing Happy Birthday To Timmy and help him to open his present.
Emily insisted that everyone participate in singing Happy Birthday. If she caught someone not singing, if someone sneezed or coughed, or spoke to another person, she would start singing the Birthday Song from the beginning. After 4 attempts, we FINALLY got the song sang to her satisfaction.
Once the present was opened, As an adult, I'm ashamed to admit, my very 1st thought was a very ungrateful one. "What in the world is a non verbal special needs child going to do with a set of Walkie Talkies?" I can't explain why I had such an ungrateful thought. Honestly, I'm not typically an ungrateful person. I can usually find the best in anything and anyone. I knew that the gift was bought with a lot of thought, by a mom who understands disabilities. Timmy's CAP-C case manager has a son, who has a visual impairment, developmental delays and other special needs.
It was at that moment that I had a virtual slap in the face or a bump on my noggin. Of course, Walkie Talkies are a perfect gift for a non verbal special needs child. How? Well, with the help from an adult or a sibling, the vocalizations that Timmy makes, even though they aren't words, CAN be taken as conversation. And the holder of the 2nd Walkie Talkie can carry on a conversation with Timmy. Which hopefully will help him to understand the pattern to a meaningful conversation and possibly pick up new words.
At about this same time, I guess it was the force of the virtual slap or bump on my noggin that gave me two ideas for uses of the Walkie Talkies. We have a baby monitor in Timmy's room, Unfortunately his monitor doesn;'t have intercom capabilities. So if one of us happens to be downstairs with Timmy while the other parent is upstairs, one of us has to come to the bottom of the stairs and yell up stairs to have questions answered. The same goes if both of us happens to be upstairs and one of Timmy's nurses has a question or concern that needs addressing.
Timmy's monitor is always on if one or both of us is upstairs. So we could use the Walkie Talkies to talk to each other while still being able to tend to Timmy's needs and not having to run to the stairs and yell up to have questions answered.
The moral of this story is; When someone does something nice for you or someone that you love, instead of being ungrateful and finding faught in the gift; Look closely at the gift and try to find something positive within it. If you look long and hard enough, you will surely find something positive that will truely turn our ungrateful frown upside down. SMILE!
Showing posts with label Lifes Lessons. Show all posts
Showing posts with label Lifes Lessons. Show all posts
Monday, November 23, 2009
Sunday, November 1, 2009
The Impact of Childhood Disability: The Parent's Struggle
This article was shared on the Bilateral Anophthalmia support group, in which I am a member. I found the article to be very interesting as well as enlightening. It really made me step back, take a long look at myself, my life with Timmy and what it really takes to be able to "cope' with the loss of a "normal" child and to be able to accept the disabled child that I so whole heartedly love!
After reading the article, What do you think? Has he hit the nail square on the head or does what he is say not make any sense to you?
***************************************************
The Impact of Childhood Disability: The Parent's Struggle
by Ken Moses, Ph.D.
I was taught that the way to deal with adversity or pain was to "tough it out." If you could avoid showing the pain, then you had "beaten the rap," and dealt with the problem competently. I am a psychologist who works with people who are grieving over profound losses. Few would argue that facing the devastating and continuing loss of having an impaired child is among the most painful experiences that a person can confront. After working with parents of the impaired for many years, I have come to believe that I was given bad advice. I have come to believe that pain is the solution, not the problem.
Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future. Children are our second chance, our ultimate "life products," the reflection and extension of our very being. To know that a human life exists that grows from our genes, our bodies, that is a result of our existence, brings a measure of spirituality into the most hardened individual. Something basic to our sense of being is stirred when we witness the miracle of the continuity of life. What happens when this core experience is marred irreversibly by disability? How does a parent survive the devastation of a handicap in their child that shatters their heartfelt dream? How do they go on? How can they help their child, their other children, themselves?
Before I started working in this field, I noted that people who faced adversity basically became better or worse; none stayed the same. What made the difference? Some parents seem to pull their lives together around their child's impairment, others go to pieces. Over fifteen years ago, I ran my first parent group comprised of mothers of children with special needs. These people helped me enormously as I started to answer some of the important questions that relate to coping with childhood impairment.
I began the group using traditional group psychotherapy methods, an approach designed to intervene on psychopathology. That approach did not work for a simple reason: those mothers were not suffering from pathologies, they were reeling from the impact of having disabled children. Gradually I let go of the old way of doing things and permitted myself to listen and learn from this courageous group of parents. Slowly, a pattern emerged that surprised me. It became evident that these people were manifesting a grieving process. This left me confused. It was clear that they were alternately anxious, angry, denying, guilty, depressed or fearful, but they were not internally "disturbed" people. Conversations focused on experiencing regrets, being overwhelmed, and other feeling common to people who are bereaved. My puzzlement: "Who died?" At that time, my understanding of grief was simple, concrete, and exclusively tied to death.
What followed was a remarkable process. The group members struggled with a number of concepts that led us all to some powerful contemplations about parental grief. Is it the loss of a "normal" child? Is it the disruption of one's "normal" lifestyle? Is it the sense of shame or humiliation that is experienced with family, friends, or other peers? Is it the profound disappointment that some experienced with the ineffective responses of their ostensible support group? We might have shared such thoughts endlessly, until I formulated a key question that helped to bring these diffused feelings and thoughts into focus. It came out innocently enough: "Think back to when you were anticipating the birth of your child. Who (or what) was this child to have been for you? What followed was a remarkable outpouring of poignant, anguished human sharing that, to this day, serves as the foundation for understanding and working with parents of impaired children.
Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heartfelt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on ones ability to separate from the lost dream, and to generate new, more attainable, dreams.
As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.
Grieving is an unlearned, spontaneous, and self-sufficient process. It consists of states of feeling that provide the opportunity for self-examination, leading to both internal and external change. The grieving states that facilitate separation from a lost dream are as follows: denial, anxiety, fear, guilt, depression, and anger. The word "states" is used instead of "stages," to emphasize grieving is not a step-by-step process that evolves through discrete stages. This depiction of what a parent goes through is a presentation of theory, not irrefutable fact. It is meant to help people find their own ways of dealing with the unspeakable. I look at it as a map, not a recipe. A recipe tells people what to do if they desire a particular result. A map, on the other hand, is one person's partial impression of reality that can be used by another to help them get to where they wish to go.
When theories of grieving are used as a recipe to produce acceptance, two false premises are inflicted on parents. The premise that grieving should move through a specific order is flatly inaccurate. A consistent pattern is not evident in people dealing with loss! Worse, when people believe that they are supposed to grieve in a certain way, they often end up thinking they are doing it wrong. Secondly, the concept of acceptance is totally unfounded. In almost twenty years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it. Any use of grieving theory as a recipe is strongly discouraged.
Though the feeling states of grieving do not adhere to any strict order, there is a loose pattern that can be detected. Denial is always first, but may reemerge again and again, as often as the parent needs to experience it. Anxiety generally follows denial, but it can follow other feeling states as well. It is not uncommon for two or more feeling states to be experienced at the same time. Different families are more or less comfortable with showing certain feelings while discouraging others. In short, each person who goes through the grieving process experiences each of the feeling states, but does so in their own unique manner and order.
It is clear that this spontaneous, unlearned grieving process is central to the well-being of the child and parent alike. It is the only way that one can separate from a lost cherished dream. Many people do not make it. They have their dreams shattered by disability and collapse emotionally under the assault. Resisting the grieving process, they hold feelings in, blame self or others, become embittered, dependent, or even bizarre in their interactions. They can range from the selfless crusader to the deserter, from the alcoholic to the workaholic, from the outrageously high strung to the person who barely moves or talks. However they manifest their stuckness, these are the people who have become worse, not better, in response to loss. These are the people who could not or would not experience the feelings of grieving. Many of them resisted the process because their subculture (their family, neighbors, church, schools, and friends) sent out a consistent message: the feelings of grieving are not acceptable! Others foundered because they were stuck emotionally before they had their impaired child. Regardless of background, people become worse if they resist experiencing and sharing the spontaneous feelings of grieving. Each feeling state, no matter how negative, serves a specific and helpful function. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.
The Feeling States of Grieving
1. Denial
People who deny are considered stupid, obstructionists, dull or deliberately irritating by many who have to deal with them. None of that is true. Parents of impaired children manifest denial as a normal course of trying to deal completely with loss. It is impossible to live life fully while maintaining an awareness of the awful things that can happen to people. Most people routinely shield themselves with such thoughts as "The terrible things that happen to other people can't happen to me, because... 11 This system works fine as long as nothing terrible happens, but when it does, no one is prepared to deal with it. This is where denial in the service of grieving comes in. Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.
2. Anxiety
When a person loses a dream that is central to their being, they are forced to make major changes within themselves and within their environment. To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values, and beliefs, as well as altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to make these changes. Further, it gives focus to that energy so that the changes can be actualized. Anxiety is the inner source of the need to act.
Anxiety is generally seen as hysterical, inappropriate, and unacceptable. The culture's message is clear. As a rule we advise anxious people to "calm down," to take medication, or to use alcohol as a "solution" for the "problem" of anxiety. These unsolutions keep the parent from changing and often make things worse for all concerned. Realities must be faced, stressful as they might be. It does not take long for most parents to become aware that they, not some professional, are their child's medical, educational, and therapy managers, even though they may have minimal knowledge of these areas. That alone should drive home the urgent need for energies to be mobilized and focused by the crucial feeling of anxiety.
3. Fear
As anxiety mobilizes people to deal with change, fear is a warning that alerts the person to the seriousness of the internal changes that are demanded. One's sense of balance and order are dramatically challenged when one confronts a meaningful loss. The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult.
Significant losses produce a profound sense of abandonment and vulnerability. We have a number of sayings to cope with this level of fear, e.g., "It is far better to have loved and lost, than to have never loved at all." Each person must find their own words to confront the sense of abandonment and vulnerability generated by a significant loss. Most parents experience the fear of vulnerability about having more children after they have had an impaired child, or about "over-protectionism," the gut-wrenching fear of permitting their impaired child to do anything that feels risky. Given the ways that this part of grieving is manifest, it should not be difficult to see that fear is the medium that encourages the struggle to reattach, to love again in the face of a loss.
4. Guilt
Parents of impaired children manifest guilt through the normal course of grieving and are often criticized for doing so. Guilt is a feeling state that has become so identified with being neurotic that people feel guilty about feeling guilty. Since sharing such feeling often evokes negative judgments, it can be difficult for a sophisticated parent to talk about guilt freely. On the surface, guilt-ridden people may appear not only neurotic, but superstitious, ignorant and primitive. They are often viewed as unpleasant, uncomfortable people to be with and therefore are dismissed or treated harshly by friends, family, and professionals.
Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child's handicap. Their story is often accurate and, on the whole, persuasive. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child's impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child's impairment is punished for a past inappropriate thought, feeling, or action. One of the more common "guilt thoughts" is regretting the pregnancy sometime during gestation. When something goes wrong after that thought occurs, "it's all my fault" becomes a natural outcome. Lastly, guilt can be expressed through the parent's belief that good things happen to good people, and bad things happen to bad people. Because parents have an impaired child, they must be bad people. Because they have an impaired child, they must be bad people and consequently feel shame and guilt. How can such painful explanations of tragedy be useful to bereaved individuals? Simply by being explanations. Guilt "explains" the unexplainable.
Human beings began to question the "why" of things from very early on in their lives. What are the rules which govern the way of things: cause and effect as well as right and wrong? A most important "why" concerns how one's "right" or "wrong" actions effect one's life. What difference does it make that a person is moral, ethical, legal, caring, ambitious? How is it that one does or does not influence the events of one's life? Some of us found early and easy answers to these questions and have not considered them since. After a loss, such questions cannot be answered in an ordinary fashion. Rather, they must be addressed through the kind of grief-related struggles addressed here. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. The order of things is totally upset when an innocent child suffers. The parent experiences deep pain, pain that can be used to reorder the rightness of the world. Guilt is the feeling state that facilitates this struggle to reorder. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.
5. Depression
A common response to loss often is characterized by profound and painful sobbing. Parents report that at times it feels as though the tears will never stop. There is a rest, but then for no apparent reason, waves of despair and anguish wash over the parent once more. Between the tears, one can sit alone, staring silently. Those periods of silence can last well beyond the periods of tears. The thoughts of depression take over, thoughts like: "What's the use of trying, it's all over,," or "Nothing I do matters, because nothing will change what has happened to my child!" Depression is subtly rejected and judged as pathological by much of our culture. When people display such feelings, they are often told to "cheer up", given medication, or offered distractions. Such responses are inappropriate, for depression is part of normal, necessary, and growthful grieving. It attends to another aspect of a basic human struggle that loss stirs.
As we mature, we develop and modify our definitions of the following words: competence, capability, value, and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are OK or not. What criteria does a person have to meet to feel like a competent parent, a capable worker, a valued friend, or a strong person? Each person determines these standards privately, even secretly. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value, and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can't use the measures of her peers, like having a daughter graduate from college, or become homecoming queen. What is the worth of a father who cannot "fix" what is broken in his impaired son? Out of this struggle of defining one's worth come the frightening feelings of helplessness, hopelessness, and haplessness. Faced with loss, a parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopelessness), and unable to believe that their lives are touched by good luck (hapless).
Such feelings are terrifying for both the parents and those around them. For that reason, it is hard to see that depression is a normal and necessary part of the grieving process. Depression is the medium that helps parents come to new definitions of what it takes to be a competent, capable, valuable and strong people, even though their child has impairments that they cannot cure.
6. Anger
Anger, for many people, is the most disconcerting of the feeling states. It too is a natural and necessary part of the grieving process. Parents feel anger at the harm done to their child and the shattering of their dreams. When one encounters a significant loss, it is likely that one's internal sense of justice is severely challenged. To continue to trust in the world, one must have a sense of justice that confirms an orderliness and fairness to the way the world works.
A parent can righteously demand to know why he or she has an impaired child: "Why me, why not you!" Implicit in the question is the notion that there must be good reason that such a thing happens to one parent and not to another. A parents'concept of justice, like value and worth, is another unique product of that individual's thinking and development. When confronted with the traumatic loss of a dream, that internal sense of justice is violated. Crying out in the face of injustice, the parent develops new ways to look at justice in the world. "What, after all, is fair, if this can happen?" Anger is the medium through which a parent redefines fairness and justice. It integrates new beliefs within the deepest emotional levels of the grieving parent.
Unfortunately, anger is an emotion that is actively rejected by the culture at large and bypeople closest to the parent. The angry parent experiences rejection by others, confusion about feeling anger and acting out the feeling, the feeling of being out of control. All of this makes it very difficult for this important feeling to run its course.
Anger also poses other dilemmas. Unlike the other feeling states of grieving, anger is directed toward someone or something. Who (or what) is the object of parental anger? This question deeply distresses most parents, because the honest answer is often so troubling that many people avoid asking themselves the question. The unacceptable answer, of course, is that the impaired child is the object of anger. After all, who has entered this parent's life, disrupted it, caused immeasurable pain, and drained the parent's time, energy, and money.
Most parents were raised to believe that feeling and expressing negative feelings about one's child is taboo. "The child never asked to be handicapped, let alone to be born. How can one be reasonably angry at this child?" If the child is blameless, than it must be unreasonable to feel anger toward the child-even though one does! The conflict between what parents feel and what they can permit themselves to express can cause a return to denial. Another outcome of this conflict is that the parent can displace the anger onto others. Spouses, non-impaired siblings of the impaired child, and professionals are all possible targets of this displaced anger.
When considering the feeling states of grieving, especially the feeling state of anger, logic and reason are irrelevant. Where is the logic behind cursing a rug that one has just tripped on? What is the purpose of kicking a flat tire? What good does it do to admonish anyone after they have already done the wrong thing? Expressing simple anger clears the way to getting on with the task at hand. Expressing anger opens the way to address the meaning of justice (though enacting angry behavior sidetracks the parent from the task at hand). While there is no logic, there is purpose and function to the expression of angry feelings. As events occur that violate one's sense of justice, the outrage must be expressed. Those expressions help to redefine one's concepts of fairness and justice.
The parent of an impaired child separates from dreams that were shattered by impairment through grieving. Denial, anxiety, fear, depression, guilt, and anger all emerge. If they are shared with other people, these feelings help parents grow and benefit from what might be the worst tragedy of their lives. Grief must be shared deeply and fully until the underlying issues are revealed. The reopening of these issues changes the parent's world view. New perceptions of themselves and their world serve as a solid foundation for coping with the disability and for personal growth. Yielding to the grieving process helps parents find the inner strength and external support needed to face profound loss; to mobilize and focus the energies needed to change their lives; to reattach to new dreams and loves in spite of feeling abandoned and vulnerable; to redefine their criteria for competence, capability, value, and potency; to reassess their sense of significance, responsibility, and impact upon the world around them; and to develop new beliefs about the universal justice system that makes the world a tolerable place to live, even though terrible losses can occur. The culturally rejected feeling states of denial, anxiety, fear, depression, guilt, and anger may be used in surprisingly positive ways when the feelings are fully shared. Perhaps you can see now why I think that experiencing and sharing the pain is the solution, not the problem. Through my life I have experienced many losses. For many years I dealt with these losses by stifling feelings, workaholism, toughing-it-out, and innumerable other ways that kept me from experiencing what had happened to me. I became one of the "walking wounded" that I was committed to helping. Ironically, it was not until I myself had a child with impairments that I began to take the advice that I had so freely given to other parents. I started to yield to the natural and necessary process of grieving. Like everyone else, I discovered that only now am I growing with the impact of the loss. I will continue to grieve and to grow as my child and I develop and experience new losses and new strengths.
After reading the article, What do you think? Has he hit the nail square on the head or does what he is say not make any sense to you?
***************************************************
The Impact of Childhood Disability: The Parent's Struggle
by Ken Moses, Ph.D.
I was taught that the way to deal with adversity or pain was to "tough it out." If you could avoid showing the pain, then you had "beaten the rap," and dealt with the problem competently. I am a psychologist who works with people who are grieving over profound losses. Few would argue that facing the devastating and continuing loss of having an impaired child is among the most painful experiences that a person can confront. After working with parents of the impaired for many years, I have come to believe that I was given bad advice. I have come to believe that pain is the solution, not the problem.
Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future. Children are our second chance, our ultimate "life products," the reflection and extension of our very being. To know that a human life exists that grows from our genes, our bodies, that is a result of our existence, brings a measure of spirituality into the most hardened individual. Something basic to our sense of being is stirred when we witness the miracle of the continuity of life. What happens when this core experience is marred irreversibly by disability? How does a parent survive the devastation of a handicap in their child that shatters their heartfelt dream? How do they go on? How can they help their child, their other children, themselves?
Before I started working in this field, I noted that people who faced adversity basically became better or worse; none stayed the same. What made the difference? Some parents seem to pull their lives together around their child's impairment, others go to pieces. Over fifteen years ago, I ran my first parent group comprised of mothers of children with special needs. These people helped me enormously as I started to answer some of the important questions that relate to coping with childhood impairment.
I began the group using traditional group psychotherapy methods, an approach designed to intervene on psychopathology. That approach did not work for a simple reason: those mothers were not suffering from pathologies, they were reeling from the impact of having disabled children. Gradually I let go of the old way of doing things and permitted myself to listen and learn from this courageous group of parents. Slowly, a pattern emerged that surprised me. It became evident that these people were manifesting a grieving process. This left me confused. It was clear that they were alternately anxious, angry, denying, guilty, depressed or fearful, but they were not internally "disturbed" people. Conversations focused on experiencing regrets, being overwhelmed, and other feeling common to people who are bereaved. My puzzlement: "Who died?" At that time, my understanding of grief was simple, concrete, and exclusively tied to death.
What followed was a remarkable process. The group members struggled with a number of concepts that led us all to some powerful contemplations about parental grief. Is it the loss of a "normal" child? Is it the disruption of one's "normal" lifestyle? Is it the sense of shame or humiliation that is experienced with family, friends, or other peers? Is it the profound disappointment that some experienced with the ineffective responses of their ostensible support group? We might have shared such thoughts endlessly, until I formulated a key question that helped to bring these diffused feelings and thoughts into focus. It came out innocently enough: "Think back to when you were anticipating the birth of your child. Who (or what) was this child to have been for you? What followed was a remarkable outpouring of poignant, anguished human sharing that, to this day, serves as the foundation for understanding and working with parents of impaired children.
Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental, heartfelt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as part of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on ones ability to separate from the lost dream, and to generate new, more attainable, dreams.
As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.
Grieving is an unlearned, spontaneous, and self-sufficient process. It consists of states of feeling that provide the opportunity for self-examination, leading to both internal and external change. The grieving states that facilitate separation from a lost dream are as follows: denial, anxiety, fear, guilt, depression, and anger. The word "states" is used instead of "stages," to emphasize grieving is not a step-by-step process that evolves through discrete stages. This depiction of what a parent goes through is a presentation of theory, not irrefutable fact. It is meant to help people find their own ways of dealing with the unspeakable. I look at it as a map, not a recipe. A recipe tells people what to do if they desire a particular result. A map, on the other hand, is one person's partial impression of reality that can be used by another to help them get to where they wish to go.
When theories of grieving are used as a recipe to produce acceptance, two false premises are inflicted on parents. The premise that grieving should move through a specific order is flatly inaccurate. A consistent pattern is not evident in people dealing with loss! Worse, when people believe that they are supposed to grieve in a certain way, they often end up thinking they are doing it wrong. Secondly, the concept of acceptance is totally unfounded. In almost twenty years of working with bereaved people, as well as dealing with my own losses, I have never seen anyone achieve acceptance of loss, only acknowledgement. Belief in the concept of acceptance leads parents into feeling like failures for not being able to attain it. Any use of grieving theory as a recipe is strongly discouraged.
Though the feeling states of grieving do not adhere to any strict order, there is a loose pattern that can be detected. Denial is always first, but may reemerge again and again, as often as the parent needs to experience it. Anxiety generally follows denial, but it can follow other feeling states as well. It is not uncommon for two or more feeling states to be experienced at the same time. Different families are more or less comfortable with showing certain feelings while discouraging others. In short, each person who goes through the grieving process experiences each of the feeling states, but does so in their own unique manner and order.
It is clear that this spontaneous, unlearned grieving process is central to the well-being of the child and parent alike. It is the only way that one can separate from a lost cherished dream. Many people do not make it. They have their dreams shattered by disability and collapse emotionally under the assault. Resisting the grieving process, they hold feelings in, blame self or others, become embittered, dependent, or even bizarre in their interactions. They can range from the selfless crusader to the deserter, from the alcoholic to the workaholic, from the outrageously high strung to the person who barely moves or talks. However they manifest their stuckness, these are the people who have become worse, not better, in response to loss. These are the people who could not or would not experience the feelings of grieving. Many of them resisted the process because their subculture (their family, neighbors, church, schools, and friends) sent out a consistent message: the feelings of grieving are not acceptable! Others foundered because they were stuck emotionally before they had their impaired child. Regardless of background, people become worse if they resist experiencing and sharing the spontaneous feelings of grieving. Each feeling state, no matter how negative, serves a specific and helpful function. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.
The Feeling States of Grieving
1. Denial
People who deny are considered stupid, obstructionists, dull or deliberately irritating by many who have to deal with them. None of that is true. Parents of impaired children manifest denial as a normal course of trying to deal completely with loss. It is impossible to live life fully while maintaining an awareness of the awful things that can happen to people. Most people routinely shield themselves with such thoughts as "The terrible things that happen to other people can't happen to me, because... 11 This system works fine as long as nothing terrible happens, but when it does, no one is prepared to deal with it. This is where denial in the service of grieving comes in. Denial buys the time needed to blunt the initial impact of the shattered dream, to discover the inner strengths needed to confront what has really happened, and to find the people and resources needed to deal with a crisis for which one could not be prepared.
2. Anxiety
When a person loses a dream that is central to their being, they are forced to make major changes within themselves and within their environment. To deal with having an impaired child, parents go through dramatic changes that affect their attitudes, priorities, values, and beliefs, as well as altering day-to-day routines. Such changes require a great deal of energy. Anxiety mobilizes the energy needed to make these changes. Further, it gives focus to that energy so that the changes can be actualized. Anxiety is the inner source of the need to act.
Anxiety is generally seen as hysterical, inappropriate, and unacceptable. The culture's message is clear. As a rule we advise anxious people to "calm down," to take medication, or to use alcohol as a "solution" for the "problem" of anxiety. These unsolutions keep the parent from changing and often make things worse for all concerned. Realities must be faced, stressful as they might be. It does not take long for most parents to become aware that they, not some professional, are their child's medical, educational, and therapy managers, even though they may have minimal knowledge of these areas. That alone should drive home the urgent need for energies to be mobilized and focused by the crucial feeling of anxiety.
3. Fear
As anxiety mobilizes people to deal with change, fear is a warning that alerts the person to the seriousness of the internal changes that are demanded. One's sense of balance and order are dramatically challenged when one confronts a meaningful loss. The parents experience the terror of knowing that they will be required to change on a fundamental level, against their will, with full understanding that the process of internal change is very difficult.
Significant losses produce a profound sense of abandonment and vulnerability. We have a number of sayings to cope with this level of fear, e.g., "It is far better to have loved and lost, than to have never loved at all." Each person must find their own words to confront the sense of abandonment and vulnerability generated by a significant loss. Most parents experience the fear of vulnerability about having more children after they have had an impaired child, or about "over-protectionism," the gut-wrenching fear of permitting their impaired child to do anything that feels risky. Given the ways that this part of grieving is manifest, it should not be difficult to see that fear is the medium that encourages the struggle to reattach, to love again in the face of a loss.
4. Guilt
Parents of impaired children manifest guilt through the normal course of grieving and are often criticized for doing so. Guilt is a feeling state that has become so identified with being neurotic that people feel guilty about feeling guilty. Since sharing such feeling often evokes negative judgments, it can be difficult for a sophisticated parent to talk about guilt freely. On the surface, guilt-ridden people may appear not only neurotic, but superstitious, ignorant and primitive. They are often viewed as unpleasant, uncomfortable people to be with and therefore are dismissed or treated harshly by friends, family, and professionals.
Generally, parents of impaired children express guilt in one of three ways. One way is by telling a story that explains how they are responsible for their child's handicap. Their story is often accurate and, on the whole, persuasive. The current emphasis on the prevention of birth defects has brought many parents to feel that they caused their child's impairment. The issue is not the logic, but the feeling of guilt. Another way that guilt is manifested is in the conviction that the child's impairment is punished for a past inappropriate thought, feeling, or action. One of the more common "guilt thoughts" is regretting the pregnancy sometime during gestation. When something goes wrong after that thought occurs, "it's all my fault" becomes a natural outcome. Lastly, guilt can be expressed through the parent's belief that good things happen to good people, and bad things happen to bad people. Because parents have an impaired child, they must be bad people. Because they have an impaired child, they must be bad people and consequently feel shame and guilt. How can such painful explanations of tragedy be useful to bereaved individuals? Simply by being explanations. Guilt "explains" the unexplainable.
Human beings began to question the "why" of things from very early on in their lives. What are the rules which govern the way of things: cause and effect as well as right and wrong? A most important "why" concerns how one's "right" or "wrong" actions effect one's life. What difference does it make that a person is moral, ethical, legal, caring, ambitious? How is it that one does or does not influence the events of one's life? Some of us found early and easy answers to these questions and have not considered them since. After a loss, such questions cannot be answered in an ordinary fashion. Rather, they must be addressed through the kind of grief-related struggles addressed here. When people confront a loss, the beliefs they held regarding cause and effect, right and wrong, and their impact upon life are deeply shaken. The order of things is totally upset when an innocent child suffers. The parent experiences deep pain, pain that can be used to reorder the rightness of the world. Guilt is the feeling state that facilitates this struggle to reorder. Basically the guilt-ridden person is saying that they are accepting responsibility for everything. It feels better to do that than to believe that they have no influence on anything! Guilt, in this sense, helps one to redefine the issue of cause and responsibility in the light of loss.
5. Depression
A common response to loss often is characterized by profound and painful sobbing. Parents report that at times it feels as though the tears will never stop. There is a rest, but then for no apparent reason, waves of despair and anguish wash over the parent once more. Between the tears, one can sit alone, staring silently. Those periods of silence can last well beyond the periods of tears. The thoughts of depression take over, thoughts like: "What's the use of trying, it's all over,," or "Nothing I do matters, because nothing will change what has happened to my child!" Depression is subtly rejected and judged as pathological by much of our culture. When people display such feelings, they are often told to "cheer up", given medication, or offered distractions. Such responses are inappropriate, for depression is part of normal, necessary, and growthful grieving. It attends to another aspect of a basic human struggle that loss stirs.
As we mature, we develop and modify our definitions of the following words: competence, capability, value, and potency. They are words of profound personal significance. They are the criteria that people use to decide if they are OK or not. What criteria does a person have to meet to feel like a competent parent, a capable worker, a valued friend, or a strong person? Each person determines these standards privately, even secretly. When parents are confronted with an impaired child, whatever definitions they held for competency, capability, value, and potency usually no longer apply. How does a mother feel competent when she has a retarded daughter? She can't use the measures of her peers, like having a daughter graduate from college, or become homecoming queen. What is the worth of a father who cannot "fix" what is broken in his impaired son? Out of this struggle of defining one's worth come the frightening feelings of helplessness, hopelessness, and haplessness. Faced with loss, a parent feels unable to act effectively (helpless), unable to imagine that things will ever get better (hopelessness), and unable to believe that their lives are touched by good luck (hapless).
Such feelings are terrifying for both the parents and those around them. For that reason, it is hard to see that depression is a normal and necessary part of the grieving process. Depression is the medium that helps parents come to new definitions of what it takes to be a competent, capable, valuable and strong people, even though their child has impairments that they cannot cure.
6. Anger
Anger, for many people, is the most disconcerting of the feeling states. It too is a natural and necessary part of the grieving process. Parents feel anger at the harm done to their child and the shattering of their dreams. When one encounters a significant loss, it is likely that one's internal sense of justice is severely challenged. To continue to trust in the world, one must have a sense of justice that confirms an orderliness and fairness to the way the world works.
A parent can righteously demand to know why he or she has an impaired child: "Why me, why not you!" Implicit in the question is the notion that there must be good reason that such a thing happens to one parent and not to another. A parents'concept of justice, like value and worth, is another unique product of that individual's thinking and development. When confronted with the traumatic loss of a dream, that internal sense of justice is violated. Crying out in the face of injustice, the parent develops new ways to look at justice in the world. "What, after all, is fair, if this can happen?" Anger is the medium through which a parent redefines fairness and justice. It integrates new beliefs within the deepest emotional levels of the grieving parent.
Unfortunately, anger is an emotion that is actively rejected by the culture at large and bypeople closest to the parent. The angry parent experiences rejection by others, confusion about feeling anger and acting out the feeling, the feeling of being out of control. All of this makes it very difficult for this important feeling to run its course.
Anger also poses other dilemmas. Unlike the other feeling states of grieving, anger is directed toward someone or something. Who (or what) is the object of parental anger? This question deeply distresses most parents, because the honest answer is often so troubling that many people avoid asking themselves the question. The unacceptable answer, of course, is that the impaired child is the object of anger. After all, who has entered this parent's life, disrupted it, caused immeasurable pain, and drained the parent's time, energy, and money.
Most parents were raised to believe that feeling and expressing negative feelings about one's child is taboo. "The child never asked to be handicapped, let alone to be born. How can one be reasonably angry at this child?" If the child is blameless, than it must be unreasonable to feel anger toward the child-even though one does! The conflict between what parents feel and what they can permit themselves to express can cause a return to denial. Another outcome of this conflict is that the parent can displace the anger onto others. Spouses, non-impaired siblings of the impaired child, and professionals are all possible targets of this displaced anger.
When considering the feeling states of grieving, especially the feeling state of anger, logic and reason are irrelevant. Where is the logic behind cursing a rug that one has just tripped on? What is the purpose of kicking a flat tire? What good does it do to admonish anyone after they have already done the wrong thing? Expressing simple anger clears the way to getting on with the task at hand. Expressing anger opens the way to address the meaning of justice (though enacting angry behavior sidetracks the parent from the task at hand). While there is no logic, there is purpose and function to the expression of angry feelings. As events occur that violate one's sense of justice, the outrage must be expressed. Those expressions help to redefine one's concepts of fairness and justice.
The parent of an impaired child separates from dreams that were shattered by impairment through grieving. Denial, anxiety, fear, depression, guilt, and anger all emerge. If they are shared with other people, these feelings help parents grow and benefit from what might be the worst tragedy of their lives. Grief must be shared deeply and fully until the underlying issues are revealed. The reopening of these issues changes the parent's world view. New perceptions of themselves and their world serve as a solid foundation for coping with the disability and for personal growth. Yielding to the grieving process helps parents find the inner strength and external support needed to face profound loss; to mobilize and focus the energies needed to change their lives; to reattach to new dreams and loves in spite of feeling abandoned and vulnerable; to redefine their criteria for competence, capability, value, and potency; to reassess their sense of significance, responsibility, and impact upon the world around them; and to develop new beliefs about the universal justice system that makes the world a tolerable place to live, even though terrible losses can occur. The culturally rejected feeling states of denial, anxiety, fear, depression, guilt, and anger may be used in surprisingly positive ways when the feelings are fully shared. Perhaps you can see now why I think that experiencing and sharing the pain is the solution, not the problem. Through my life I have experienced many losses. For many years I dealt with these losses by stifling feelings, workaholism, toughing-it-out, and innumerable other ways that kept me from experiencing what had happened to me. I became one of the "walking wounded" that I was committed to helping. Ironically, it was not until I myself had a child with impairments that I began to take the advice that I had so freely given to other parents. I started to yield to the natural and necessary process of grieving. Like everyone else, I discovered that only now am I growing with the impact of the loss. I will continue to grieve and to grow as my child and I develop and experience new losses and new strengths.
The Parent's Struggle - My thoughts
Here is a copy of the email that I shared with the group. It expresses my feelings, thoughts and opinions as to what the Author was trying to convey in the article.
Hi All-
I wanted to take a few minutes and give my opinions on this article.
Speaking from the perspective of a person with a visual impairment (20/200)
since birth, a mom of 5 "normal" children, a mom of a complex special needs child (Timmy) and a mom to a son, who we lost to death at the tender age of 1 month.
I disagree with the Author when he says that "Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future." Other than "wanting" a healthy baby, I never had dreams, fantasies, illusions, or projections into "my" child's future. As a parent, I feel that my child, not I, should determine who and what they become in life. Through my nurturing and guidance from infancy, they can be anything
they set out to be. As a parent, I feel that by me projecting "my" dreams, fantasies, and illusions on what "I" want or feel that my child "should" become, only causes them to be put under undo stress, anxiety, depression and anger. The child is not being given a chance to become what they want to be, but rather what the parent wants them to become.
After only reading the first few paragraphs, I asked myself, How could the Author liken the grieving stages (states) of a child lost to death with the loss of a "normal" child? How or Why would a parent grieve for the loss of a "normal" child, if their child "only" had 1 disability ie (blindness, hearing impaired, the loss of limbs etc)? These child with only 1 disability can still become whatever they want in life. It may take them longer or it may have to be gained in a different way. My first assumption was that the Author "had" to be implying that the grieving parents were those of children who had multiple special needs.
After having read and re-read the article, looking back at my parents, and seeing that "I" had and still am grieving for Timmy, I can see where the Author is coming from.
I'm not sure at what age, my dad inparticular, had the "dream, fantasy, or illusion", that I would someday be a computer engineer. He worked long hours at a job in which, I later learned that he really didn't like, so that he could use his job benefit of a "fully paid for college education," through his work, to get me through many years of college. Well, due to my lack of common sense, I chose a different path for myself. I chose to become a mom
at a "very" young age. So I saw my dad go through the grieving process. Whether he or my mom went through the grieving process upon my birth and learning that I was legally blind, I honestly can't say or remember. I'm sure it is possible, being at the age of 4, I had to leave home to go away to attend our states blind school.
It wasn't until I had finished reading this article, that I realized that "I" had and am still grieving for Timmy. We found out about Timmy's complex medical issues when I was about 17 weeks pregnant. This is when "DENIAL" first set in. I had 4 healthy children. I went to eveery OB visit. I ate well, took my prenatal vitamins, exercised daily and got plenty of rest. The ultrasound HAD to be wrong. This can't behappening to me, things like this only happen to other families.
Upon Timmy's birth, when ALL of his disabilities we confirmed, I felt I had to know everything there was to know about each of Timmy's conditions. What medical treatments and therapies there were available. Where to find resources to help Timmy and us, as his parents, to better care for him. The ANXIETY still exsist, because I always feel that there "must" be something more that "i," his Doctors, his therapist and his teacher "could" be doing to help his development.
FEAR; I fear the unknown. Timmy has looong out lived any expectations of any of his Doctors. Will we have him for just another few days, weeks, months, or years? Will my taking him out in public, so that he can have the same experiences that my "normal" children had or have going to lessen his time here with us, due to him getting sick? Keeping Timmy in a protective bubble, so to speak, isn't an option, because I/We want Timmy to be able to experience life to its fullest, even with his disabilities.
GUILT; Even though genetic testing has been preformed and it has been determined that Timmy's medical issues are a result of "bad" genes, I still can't help but to blame myself. I find myself asking the question "I had 4 healthy children before Timmy, why weren't they affected?" Even though Timmy has a bad gene, "maybe" I picked up something from our pet cat that we had and this along with the bad gene caused his medical issues? Maybe I ate too much fish with mercury while trying to conceive or while pregnat and this along
with the bad gene caused his medical issues?
DEPRESSION; I find myself more often than not longing for a child who can chew a mouthful of food, so that he can enjoy the same foods as us, when we all go out to a resturant to eat, rather than having to eat everything pureed. I long for a child who can run and play with his younger sister, his older brother and his peer in the park. I long for a child who can ride a bike or be invited to sleep overs. I long for a child who can "SEE", not
just hear, smell and feel the beauty of the world around him. I long for a world in which my child will be accepted, by family, friends and strangers. A world in which, when I take my child out not 1 person will stop to stare, point, or laugh. I long for a "normal" child. BUT I whole heartedly LOVE the child I have and wouldn't trade him for that "normal" child that
I sooo long for!
ANGER; i would like to be able to admit that this "stage" of grieving is behind me, being that I/We know that Timmy's medical issues are a result of a bad gene, but it isn't. I no longer blame Floyd (Timmy's dad), my parents or Floyd's parents. My current ANGER is towards GOD. I won't go into this, but maybe someone here can relate.
In my experience, grieving the loss of a "normal" child is much easier than that of the loss of a child to death. I have found that family, friends, and sometimes even strangers are more accepting to the grieving process of the loss of a "normal" chidl than some of these same people (family, friends)are to the grieving process of that to death. Why is this? I can only speculate. Maybe it is because with death it is harder for family, friends and strangers to find comforting words to ease the pain that a paent is feeling? And these same people don't know how to "cope" with the feelings that the grieving parent is experiencing? When there is only the loss of a "normal" child, family, friends and
strangers have the opportunity to step forward, to offer support, physically, mentally, emotionally and socially. And by doing so, they are able to help care for the disabled child.
After having read this article, I have discovered that it is through my membership to "this" support group, as well as several others, that I have become better educated, a better advocate and a better parent to Timmy, because of the support and information share by these support groups.
Now to summerize; "I" think that the Aurthor was saying that people deal with the loss of a "normal" child in "many" different way. One being that some Parent(s) don't go through a grieving porcess. That some parents when faced with adversity are able to mentally, emotionally, physically and socailly change their lives without even looking back. This is the group that I thought that I was in, until I had read this article. I have accepted Timmy's disability. I have accepted Timmy for "who he is" and not for what he will never be. I have changed my life so as to be able to care and provide for Timmy's needs. I have found the strength to educate myself and others. To stand strong and to be my son's voice.
Then there is a 2nd group, in which, Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. "I" think that here the Author was trying to convey, that these are the parents who have set high hopes for their child. These parents have dreamed of that All Star Little League Player, The Homecoming Queen, The Lawyer, The Teacher, and The someday of being a Grandparent. Depending on the child's
disability, their dreams, fantasies, illusions, and projections into the future for their child have ALL been shattered. In "my" opinion, these are the parents who choose what their child will become and not let the child decide on their own who or what they will be.
And finally the 3rd group. The group in which I now have found myself. The group of parents, who grieve for the simple things that their child can not or will not ever do, like talk, walk, run with their peers, play sports, be invited to sleep overs, go to the prom, have a job, get married, have their own children. The simple things that most people take foregranted and overlook, because it tends to be the norm for all children, except for those who have severe multiple disabilities. And for those who only have a single
disability (blindness, hearing impairment) There are things that the parents of these children grieve for as well. The missed opportunity to share the beauty of the world through sight. The missed opportunity to have your child hear your voice call their name or the sound of nature.
I feel that the Author was trying to say that it is more healthy "if" parents who need to grieve are allowed to do so. If their grieving is understood and accepted by their support team, family, friends and strangers. That parents have alot to gain by sharing their feelings and experiences through a support group or counselling. That each parent can
learn for others who are travelling down the same unpaved, winding road that leads to uncertainity, acceptance and love.
Hi All-
I wanted to take a few minutes and give my opinions on this article.
Speaking from the perspective of a person with a visual impairment (20/200)
since birth, a mom of 5 "normal" children, a mom of a complex special needs child (Timmy) and a mom to a son, who we lost to death at the tender age of 1 month.
I disagree with the Author when he says that "Parents, all parents, attach to their children through dreams, fantasies, illusions, and projections into the future." Other than "wanting" a healthy baby, I never had dreams, fantasies, illusions, or projections into "my" child's future. As a parent, I feel that my child, not I, should determine who and what they become in life. Through my nurturing and guidance from infancy, they can be anything
they set out to be. As a parent, I feel that by me projecting "my" dreams, fantasies, and illusions on what "I" want or feel that my child "should" become, only causes them to be put under undo stress, anxiety, depression and anger. The child is not being given a chance to become what they want to be, but rather what the parent wants them to become.
After only reading the first few paragraphs, I asked myself, How could the Author liken the grieving stages (states) of a child lost to death with the loss of a "normal" child? How or Why would a parent grieve for the loss of a "normal" child, if their child "only" had 1 disability ie (blindness, hearing impaired, the loss of limbs etc)? These child with only 1 disability can still become whatever they want in life. It may take them longer or it may have to be gained in a different way. My first assumption was that the Author "had" to be implying that the grieving parents were those of children who had multiple special needs.
After having read and re-read the article, looking back at my parents, and seeing that "I" had and still am grieving for Timmy, I can see where the Author is coming from.
I'm not sure at what age, my dad inparticular, had the "dream, fantasy, or illusion", that I would someday be a computer engineer. He worked long hours at a job in which, I later learned that he really didn't like, so that he could use his job benefit of a "fully paid for college education," through his work, to get me through many years of college. Well, due to my lack of common sense, I chose a different path for myself. I chose to become a mom
at a "very" young age. So I saw my dad go through the grieving process. Whether he or my mom went through the grieving process upon my birth and learning that I was legally blind, I honestly can't say or remember. I'm sure it is possible, being at the age of 4, I had to leave home to go away to attend our states blind school.
It wasn't until I had finished reading this article, that I realized that "I" had and am still grieving for Timmy. We found out about Timmy's complex medical issues when I was about 17 weeks pregnant. This is when "DENIAL" first set in. I had 4 healthy children. I went to eveery OB visit. I ate well, took my prenatal vitamins, exercised daily and got plenty of rest. The ultrasound HAD to be wrong. This can't behappening to me, things like this only happen to other families.
Upon Timmy's birth, when ALL of his disabilities we confirmed, I felt I had to know everything there was to know about each of Timmy's conditions. What medical treatments and therapies there were available. Where to find resources to help Timmy and us, as his parents, to better care for him. The ANXIETY still exsist, because I always feel that there "must" be something more that "i," his Doctors, his therapist and his teacher "could" be doing to help his development.
FEAR; I fear the unknown. Timmy has looong out lived any expectations of any of his Doctors. Will we have him for just another few days, weeks, months, or years? Will my taking him out in public, so that he can have the same experiences that my "normal" children had or have going to lessen his time here with us, due to him getting sick? Keeping Timmy in a protective bubble, so to speak, isn't an option, because I/We want Timmy to be able to experience life to its fullest, even with his disabilities.
GUILT; Even though genetic testing has been preformed and it has been determined that Timmy's medical issues are a result of "bad" genes, I still can't help but to blame myself. I find myself asking the question "I had 4 healthy children before Timmy, why weren't they affected?" Even though Timmy has a bad gene, "maybe" I picked up something from our pet cat that we had and this along with the bad gene caused his medical issues? Maybe I ate too much fish with mercury while trying to conceive or while pregnat and this along
with the bad gene caused his medical issues?
DEPRESSION; I find myself more often than not longing for a child who can chew a mouthful of food, so that he can enjoy the same foods as us, when we all go out to a resturant to eat, rather than having to eat everything pureed. I long for a child who can run and play with his younger sister, his older brother and his peer in the park. I long for a child who can ride a bike or be invited to sleep overs. I long for a child who can "SEE", not
just hear, smell and feel the beauty of the world around him. I long for a world in which my child will be accepted, by family, friends and strangers. A world in which, when I take my child out not 1 person will stop to stare, point, or laugh. I long for a "normal" child. BUT I whole heartedly LOVE the child I have and wouldn't trade him for that "normal" child that
I sooo long for!
ANGER; i would like to be able to admit that this "stage" of grieving is behind me, being that I/We know that Timmy's medical issues are a result of a bad gene, but it isn't. I no longer blame Floyd (Timmy's dad), my parents or Floyd's parents. My current ANGER is towards GOD. I won't go into this, but maybe someone here can relate.
In my experience, grieving the loss of a "normal" child is much easier than that of the loss of a child to death. I have found that family, friends, and sometimes even strangers are more accepting to the grieving process of the loss of a "normal" chidl than some of these same people (family, friends)are to the grieving process of that to death. Why is this? I can only speculate. Maybe it is because with death it is harder for family, friends and strangers to find comforting words to ease the pain that a paent is feeling? And these same people don't know how to "cope" with the feelings that the grieving parent is experiencing? When there is only the loss of a "normal" child, family, friends and
strangers have the opportunity to step forward, to offer support, physically, mentally, emotionally and socially. And by doing so, they are able to help care for the disabled child.
After having read this article, I have discovered that it is through my membership to "this" support group, as well as several others, that I have become better educated, a better advocate and a better parent to Timmy, because of the support and information share by these support groups.
Now to summerize; "I" think that the Aurthor was saying that people deal with the loss of a "normal" child in "many" different way. One being that some Parent(s) don't go through a grieving porcess. That some parents when faced with adversity are able to mentally, emotionally, physically and socailly change their lives without even looking back. This is the group that I thought that I was in, until I had read this article. I have accepted Timmy's disability. I have accepted Timmy for "who he is" and not for what he will never be. I have changed my life so as to be able to care and provide for Timmy's needs. I have found the strength to educate myself and others. To stand strong and to be my son's voice.
Then there is a 2nd group, in which, Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. "I" think that here the Author was trying to convey, that these are the parents who have set high hopes for their child. These parents have dreamed of that All Star Little League Player, The Homecoming Queen, The Lawyer, The Teacher, and The someday of being a Grandparent. Depending on the child's
disability, their dreams, fantasies, illusions, and projections into the future for their child have ALL been shattered. In "my" opinion, these are the parents who choose what their child will become and not let the child decide on their own who or what they will be.
And finally the 3rd group. The group in which I now have found myself. The group of parents, who grieve for the simple things that their child can not or will not ever do, like talk, walk, run with their peers, play sports, be invited to sleep overs, go to the prom, have a job, get married, have their own children. The simple things that most people take foregranted and overlook, because it tends to be the norm for all children, except for those who have severe multiple disabilities. And for those who only have a single
disability (blindness, hearing impairment) There are things that the parents of these children grieve for as well. The missed opportunity to share the beauty of the world through sight. The missed opportunity to have your child hear your voice call their name or the sound of nature.
I feel that the Author was trying to say that it is more healthy "if" parents who need to grieve are allowed to do so. If their grieving is understood and accepted by their support team, family, friends and strangers. That parents have alot to gain by sharing their feelings and experiences through a support group or counselling. That each parent can
learn for others who are travelling down the same unpaved, winding road that leads to uncertainity, acceptance and love.
Friday, August 21, 2009
One Small Pearl
The odds of finding one small pearl in an oyster is 1 in 12,000. The odds of finding the rare purple pearl in a Quahog clam are 1 in 100,000. But if you happen to be lucky enough to find one of these pearls, you are so excited. You start planning what you will do with the pearl. Give it away to a special friend or family member, keep it and have it set in a ring or necklace or maybe sell it and use the money to pay off some bills, buy yourself something nice or save the money for a later date. You take the pearl to a jeweler to have it appraised. When the jeweler tells you that the pearl isn't worth very much, you are saddened. All of your excitement and dreams have suddenly been shattered. You quickly get over your disappointment and go on with you life as it was before you found the small pearl.
Like finding the small pearl, there are circumstances which occur in our lives which we can just put behind us and move on. There are other situations in our lives from which we learn from our mistakes and try hard not to repeat the same mistakes twice. And there are still other circumstances that occur in our lives, if given a chance we would choose not to change one single thing.
Being the mom of a child with complex special needs, is one of those situations in my life in which I wouold not change a thing, if given the opportunity to do so. I feel so blessed and honored to have been chosen to be Timmy's mom. Timmy has taught me so many of life's lessons in his 5 years with us. Life lessons that all humans should learn and that by doing so would make the world a much better place for us all.
Timmy has taught me the true meaning of Unconditional love. Without one spoken word or physical contact, with just a smile and a giggle, Timmy is able to tell us just how much he appreciates the love and care we give him. And he is able to tell us just how much he loves and adores us. Upon entering his room the first thing in the morning and speaking to Timmy. He gives us this heart melting smile and a giggle that makes us forget "why" we are feeling so depressed and that makes us forget our complaints about the world. For a few precious moments, we cuddle. It is just parent and child exchanging of feelings, thoughts, dreams and unconditional love, without a spoken word, only through smiles, giggles and body language.
He has taught me patience. With a set routine, hard work, patience, and loving guidance, that once the smallest of milestones are reached, the joy, excitement and elation are far more appreciated, than those moments when a "typical" child reaches the same milestones.
He has taught me that it is ok to cry when faced with adversity as long as you don't linger too long in self pity. To seek out help and receive help when offered. To find the strength within myself to stnad up to the ignorance of others in this world. To have the courage to educate those people who are ignorant, not to accept their ignorance toward the disabled as the "norm" of people in this world. My belief is; Through education, we can change the world one person at a time.
He has taught me bravery. To be strong, to stand up and fight for what I believe in and for what I want. Not to accept "NO" as an answer. That if one door shuts another door will open. Just because a hundred doctors may feel that they can't offer you any medical help. This is a large world and there is at least one doctor who will be willing to open his/her heart to help. Be willing to seek and explore ALL possibilities, don't be afraid to ask questions and ask the same questions more than once until you are satisfied with the answers. And don't be afraid to ask for guidance and help in seeking out info, services, or medical treatment.
He has taught me that it is ok to dream, as long as I don't get caught up in the "what ifs?" and "why me?" of life. That in life it is no longer what "I" want, but what is best for "us." That as a mom I most of the time have to settle for second best, so that Timmy can have "the best" of thing in life. I'm thankful for Timmy's happiness and health and no longer focus on the things that Timmy "can't" do, but rather on the things that we have been blessed with that Timmy "can" do. I have learned to open my eyes, ears and heart to others, offering help and support. I have also learned that not everyday will be bitter sweet. That there WILL be days that our lives are in total chaos and WILL be turned upside down by disappointment. But the best that we can do is not to get caught up in the self pity. Rather focus on tomorrow and create a game plan with will help to overcome the disappointment and solve the issue(s) at hand.
He has taught me to live for the moment. To put the daily stresses of life behind me. To be thankful for what I have and not to spend time dwelling or wishing for those thing that I don't have. Spend time together creating memories, rather than rushing about running errands, cleaning house or paying bills. No one knows how much time we have with our special children, so make the best of each moment like it may be your last.
He has taught me simplicity. Material goods and money aren't what is important. Cuddling, singing silly songs, reading/telling stories, a walk along the beach or in a park taking in the sights and sounds together. Playing simple fun games like Peek-A-Boo or Pat-A-Cake. Laughing and smiling together. Through these simple pleasures we are teaching Timmy and learning so much more about him. The simpliest of pleasures in life money can't buy, but are the ones that all children LOVE the most.
And most importantly Timmy has taught me empathy. That if I listen with my heart I will be able to fully understand his needs and desires, through his body language, smiles, giggles, laughter and vocalizations. By listening with my heart, I will be more aware of, sensitive to, and vicariously experiencing his feelings, thoughts, and experiences without having his feelings, thoughts, and experiences fully communicated via a single spoken word.
I'm not saying that everyday with Timmy is hunky dory or peachy keen. There are days in which I'm stressed to the max, exhausted from lack of sleep, depressed and feel as though I can't go on, and days that I'm angry at myself and the world. But the rewards of being Timmy's mom out weigh the negative days one hundred fold.
Even though Timmy is unable to walk, talk, play, or learn at the same pace as a "typical" child Doesn't change the fact that he is a happy, healthy child with feelings and thoughts of his own. I don't see Timmy as a disabled child, but rather I see Timmy as a child with ABILITIES who is faced with challenges.
All that Timmy has taught me and the joy that he has brought into our lives, ABSOLUTELY NO WAY would I ever consider changing a thing! Timmy is my sunshine on a cloudy day. My cup of coffee in the morning with an extra dose of caffine. His smiles and giggles give me the strength to face the day. My breathe of fresh air, when the day seems unbearable. My ray of hope when I'm feeling down and things aren't going my way. He's my inspiration. He's my HERO!!!!!!
Like finding the small pearl, there are circumstances which occur in our lives which we can just put behind us and move on. There are other situations in our lives from which we learn from our mistakes and try hard not to repeat the same mistakes twice. And there are still other circumstances that occur in our lives, if given a chance we would choose not to change one single thing.
Being the mom of a child with complex special needs, is one of those situations in my life in which I wouold not change a thing, if given the opportunity to do so. I feel so blessed and honored to have been chosen to be Timmy's mom. Timmy has taught me so many of life's lessons in his 5 years with us. Life lessons that all humans should learn and that by doing so would make the world a much better place for us all.
Timmy has taught me the true meaning of Unconditional love. Without one spoken word or physical contact, with just a smile and a giggle, Timmy is able to tell us just how much he appreciates the love and care we give him. And he is able to tell us just how much he loves and adores us. Upon entering his room the first thing in the morning and speaking to Timmy. He gives us this heart melting smile and a giggle that makes us forget "why" we are feeling so depressed and that makes us forget our complaints about the world. For a few precious moments, we cuddle. It is just parent and child exchanging of feelings, thoughts, dreams and unconditional love, without a spoken word, only through smiles, giggles and body language.
He has taught me patience. With a set routine, hard work, patience, and loving guidance, that once the smallest of milestones are reached, the joy, excitement and elation are far more appreciated, than those moments when a "typical" child reaches the same milestones.
He has taught me that it is ok to cry when faced with adversity as long as you don't linger too long in self pity. To seek out help and receive help when offered. To find the strength within myself to stnad up to the ignorance of others in this world. To have the courage to educate those people who are ignorant, not to accept their ignorance toward the disabled as the "norm" of people in this world. My belief is; Through education, we can change the world one person at a time.
He has taught me bravery. To be strong, to stand up and fight for what I believe in and for what I want. Not to accept "NO" as an answer. That if one door shuts another door will open. Just because a hundred doctors may feel that they can't offer you any medical help. This is a large world and there is at least one doctor who will be willing to open his/her heart to help. Be willing to seek and explore ALL possibilities, don't be afraid to ask questions and ask the same questions more than once until you are satisfied with the answers. And don't be afraid to ask for guidance and help in seeking out info, services, or medical treatment.
He has taught me that it is ok to dream, as long as I don't get caught up in the "what ifs?" and "why me?" of life. That in life it is no longer what "I" want, but what is best for "us." That as a mom I most of the time have to settle for second best, so that Timmy can have "the best" of thing in life. I'm thankful for Timmy's happiness and health and no longer focus on the things that Timmy "can't" do, but rather on the things that we have been blessed with that Timmy "can" do. I have learned to open my eyes, ears and heart to others, offering help and support. I have also learned that not everyday will be bitter sweet. That there WILL be days that our lives are in total chaos and WILL be turned upside down by disappointment. But the best that we can do is not to get caught up in the self pity. Rather focus on tomorrow and create a game plan with will help to overcome the disappointment and solve the issue(s) at hand.
He has taught me to live for the moment. To put the daily stresses of life behind me. To be thankful for what I have and not to spend time dwelling or wishing for those thing that I don't have. Spend time together creating memories, rather than rushing about running errands, cleaning house or paying bills. No one knows how much time we have with our special children, so make the best of each moment like it may be your last.
He has taught me simplicity. Material goods and money aren't what is important. Cuddling, singing silly songs, reading/telling stories, a walk along the beach or in a park taking in the sights and sounds together. Playing simple fun games like Peek-A-Boo or Pat-A-Cake. Laughing and smiling together. Through these simple pleasures we are teaching Timmy and learning so much more about him. The simpliest of pleasures in life money can't buy, but are the ones that all children LOVE the most.
And most importantly Timmy has taught me empathy. That if I listen with my heart I will be able to fully understand his needs and desires, through his body language, smiles, giggles, laughter and vocalizations. By listening with my heart, I will be more aware of, sensitive to, and vicariously experiencing his feelings, thoughts, and experiences without having his feelings, thoughts, and experiences fully communicated via a single spoken word.
I'm not saying that everyday with Timmy is hunky dory or peachy keen. There are days in which I'm stressed to the max, exhausted from lack of sleep, depressed and feel as though I can't go on, and days that I'm angry at myself and the world. But the rewards of being Timmy's mom out weigh the negative days one hundred fold.
Even though Timmy is unable to walk, talk, play, or learn at the same pace as a "typical" child Doesn't change the fact that he is a happy, healthy child with feelings and thoughts of his own. I don't see Timmy as a disabled child, but rather I see Timmy as a child with ABILITIES who is faced with challenges.
All that Timmy has taught me and the joy that he has brought into our lives, ABSOLUTELY NO WAY would I ever consider changing a thing! Timmy is my sunshine on a cloudy day. My cup of coffee in the morning with an extra dose of caffine. His smiles and giggles give me the strength to face the day. My breathe of fresh air, when the day seems unbearable. My ray of hope when I'm feeling down and things aren't going my way. He's my inspiration. He's my HERO!!!!!!
Sunday, July 19, 2009
No Pity Rarty Please
I have been putting off writing a post in response to some comments that we have received over the past 5 years, when strangers first meet Timmy. There was an incident that happened yesterday that has driven me to go ahead and write.
Family members whom I have not seen in over 20 years, saw Timmy for the first time yesterday. Their first response to him was "Oh poor Timmy! He's so pitiful! I just want to cry..." What's "poor" or "pitiful" about him? Does he really strike you as a child that you should feel sorry for? Do you think that he should be "pitied" because he is different? Because he can't function physically and mentally like others? Before coming to the conclusion that my son deserves to have your sympathy, I ask that you get to know him. Then let me ask YOU, Do you see a “poor” or "pitiful" child when you look at Timmy?
When I look at Timmy, I see NOTHING "poor" or "pitiful" about him. I see a child who is HAPPY all the time. I see a little boy who knows that he is the center of his parent's world. I see a child who plays, laughs, loves and cries. I see a child who has distinct likes and dislikes. I see a little boy who likes to play with other children. I see a little boy who likes to play rough, like other children his age. I see a child who is eager and willing to try new experiences. I see a little boy who loves to be the center of attention when in a group. I see a child who is able to express his needs and wants, without uttering a single word.
Just because Timmy can't stand alone, can't walk independantly, can't talk, can't see and can't hear the world around him. Does this alone mean that he is less of a Human Being, who deserves to be pitied??? Because far above and beyond, he is a HUMAN BEING. A person who has feelings, feelings of joy and sadness, anxiety and pain, fear and love for others. And a "real" living person who needs understanding, love, and the opportunity to interact with other people.
Dispite Timmy's differences and limitations, he is what any parent "wants" in a child, for their child to be happy and healthy. Timmy is happy, he is healthy. Timmy likes to play with toys. Some of his toys may have to be adapted or more developmentally age approperate, but still Timmy CAN and DOES play with toys. There are times like any other child, Timmy will get sick. But we don't treat his illnesses any differently than any other parent would treat their child's illnesses. We take Timmy to the doctor. We give Timmy mediations to help make him feel better. And we nurture him through his illness until he is better.
Please don't pitty my son. Please don't assume that any child or an adult who has special needs deserves to be pitied. Open your eyes. Open your heart. Look at the individual for whom they "really" are. You will soon discover that with every breath they take they are saying to you; It is ok to be different. It is ok that I have limitations. I am happy! I am ME!
What else in life are we "really" seeking for our children and for ourselves? Happiness. The reason we do the things that we do in our lives is, because they make us happy. That is why we take walks along the beach at sunset. That is why we play tag with our children. That is why we eat chocolate or drink coffee. That is why we go for a swim or get a nice massage. WHY??? Because all of these things make us happy.
Now tell me does this look like a "poor" or "pitiful" child???
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