Where is God? Before I attempt that question I, first, must explain my current surroundings. I am warmed to a constant 72 because the hospital stays constant. That is pretty good for such a large building. I am tucked into a corner of a triangular cubby that is just large enough for me and three others, but I sit alone. I face a 20’ x 8’ mural of ceramic tile, created by artist, Dit Wah Deng. It is brightly lit by a yellow sun and rainbow of blue, orange, and brown. Three red-tiled children share the privilege of holding up large tiled hearts by a green tree with heart shaped leaves that are gold and red. This mural tells me that, “a child’s heart is eternally loving and true.” I am tucked into the opposite corner, just five feet away, and can look out though my reflection and see a small part of Philadelphia. And if I turn the other way I can see the sources of the crying.
Two women embrace tightly by the elevators, and though I don’t know who just lost what, I recognize the sobs. Even against that bright yellow sun, there is a presence of sadness. I know that sadness. Their tears remind me of a 29 week ultrasound, when my wife and I were handed the initial heavy news by a good doctor who knew how to deliver what bad things he had to say. Seeing their embrace helped me remember when I was on the 3rd floor here after Lila’s birth in the SDU. Our daughter, the mystery, was here for months after she was born, in order for us to watch the patient doctors slowly find other things that were changing our lives bit by long…, slow…, irritating and painful bit. And hearing one woman say to the other, “No one can stand this pain alone,” sent me through a recent memory from only just days ago.
I woke up on Wednesday morning at four though I normally wake at 5:30 during the week. I had been dreaming about Lila’s next surgery, and was scared. I have sat in different parts of this building, looked out different windows, and been escorted by different personalities to many different consultation rooms. (I’ve always been impressed how such a similarly purposed room can be so different one to another, how even the different placement of tissue boxes can so dramatically change the atmosphere.) I have anticipated surgery before, but had never felt the fear I had for Lila in that early morning hour. Where did this fear come from? Why was it so different from the other times? Where did my confidence in surgeons go?
I went downstairs and put a log in the wood stove. I looked through the charred creosote at the glowing embers and new sparks. I got up and had a short glass of water and then another, and then I went to pray. I moved the cat from the ottoman and I prayed; silently and aloud, and let a few tears come to my eyes. Then I went up stairs and looked in on my son to see him sleeping in his lamp-light. I opened my daughter’s room and saw her still covers. Then I went quietly into our bedroom where my wife lay bundled on her side of the bed while Lila rolled in her sleep in the crib we keep by us. I crept past the IV pole where her formula is slowly pumped to her through the night and I patted her back. And I prayed for Lila, and as I did I looked for more tears. In that dark room with just the light from a small hallway sconz I was looking for God.
I finished my prayers unsatisfied. I very much dislike being late for my work, or anything for that matter, so I moved through the rest of my morning, my mind and heart still adding weight to my school bags. Once in my car I continued my standard morning with a search for something to satisfy the hearing part of my mind, but Wednesday morning the stations were about as empty as its sky. Adding to the selection delimma was a static I have tried for years to figure out. My radio is clear most mornings, but some, usually very clear sky mornings, are treacherous for FM signals. And, though, I cannot be sure, I have anecdotally determined that the signal must be fading even more significantly, for some reason, by the Sunoco station. But not all FM broadcasts, and not the same signals each time, and truthfully, that signal goes sometimes before and after the Sunoco sign. Wednesday morning was a clear sky. And my FM stations were truly bothersome, but I couldn’t be alone. I needed something to listen to. But ultimately the unintelligible sounds were too much so I decided it must be God telling me I needed to talk some more. So I did.
“God, why am I so scared? Is there something wrong about to happen this time? Should I call off the operation? Can you give me a sign? Let me hear your still, small voice, Lord. I need to know what to do.” I prayed these thoughts, and waited in near silence for a few moments, and then searched again for a voice on the radio. I settled for one that was not my first choice, but was clear. I listened through one sponsor, and then with the return of the broadcast, I heard what could be a promising listen, as it started with the “therapeutic benefits of art in hospitals”. It got better because it began to discuss the quality of hospitals in Philadelphia. And before the end of the report I had heard the most convincing case for CHOP’s recovery rate for children that I could have heard. The hospital highlighted in this report was familiar to my experience intimately, as I have sat in its pre-op rooms that were so accurately described to me. I have heard the dings and dongs of the touch-activated living sculpture in the hospital’s atrium. I have seen the colorful glass panels, and large art displays throughout the buildings. But what I heard most clearly was the reassurance from God that he is listening, and he is present with us.
Where is God? He is not limited to radio shows or car rides. We know by scripture that God was hovering over the earth even when it was formless and empty, yet he is not restricted to being uniquely in heaven. God’s presence is moving amidst the earth and he is interacting with his creation. “Can anyone hide in secret places so that I cannot see him?’ declares the Lord. God’s presence and watchful eye never leaves us. Speaking through the ceramic tile mosaic is God. In the loving embrace of crying women searching for shelter from their pain, there is God. I realized Wednesday morning, again, that he is present with me everywhere.
Saturday, January 23, 2010
Friday, January 22, 2010
We Wait
“Hi. How are you guys?” “Your little baby is very sweet. How old is he?” Your little one is in the pod across from our little Lila, I think.” …These are the thoughts I have today. These are the verses I silently say when I see the parents of other little babies in the CICU. I recognize them as parents because they show signs of the same fatigue as me. Some are tired from single day of stress and imagining the worst. Others are more battle worn. They have showered and wear fresh clothes, but they are tired from having their positive thoughts wrestled away from them to run off through the hospital halls with their bags of hope.
We have these things in common. Our eyelids hang a little lower. We smile and cry in shifts. We take longer brushing our teeth because we’re looking into the mirror for our thoughts and feelings. And we wait. We wait for the next specialist to say, “I see a bright future for your little one.” We wait for our little ones to recover from anesthesia. We wait for a look of real confidence from the neurologist. We wait for another parent, who’s across the hall to say, “It’s going to be OK.”
-Mike Walls
We have these things in common. Our eyelids hang a little lower. We smile and cry in shifts. We take longer brushing our teeth because we’re looking into the mirror for our thoughts and feelings. And we wait. We wait for the next specialist to say, “I see a bright future for your little one.” We wait for our little ones to recover from anesthesia. We wait for a look of real confidence from the neurologist. We wait for another parent, who’s across the hall to say, “It’s going to be OK.”
-Mike Walls
Thursday, January 21, 2010
From time to time, parents will tell us that they do not believe their child really has autism, despite having all of the symptoms, because they do not “lack empathy.” Like these parents, I have also read literature that makes this assumption: that people with autism have little or no empathy for others. This assumption puzzles me. “Lack of empathy” is not a diagnostic criterion in the Diagnostic and Statistical Manual for Autistic Disorder, Pervasive Developmental Disorder, or Asperger’s Disorder. Similarly, the most seminal and thoughtful research and literature on ASDs (Uta Frith, Lorna Wing, Simon Baron-Cohen, etc.) does not assert that individuals with ASDs lack empathy.
I have asked individuals with ASDs about empathy, and they have described to me feeling extremely empathetic at times; in fact, several of these individuals have mentioned that they feel “too sensitive” towards others. One young man on the spectrum noted that when he sees someone experience something negative, such as falling down and hurting themselves, he winces as he literally “feels their pain.” However, he noted, his empathy is only evoked when he, at some point, has experienced the same situation or same evident emotion as the person with whom he is empathizing. If someone is experiencing something he cannot relate to or understand from his own past experience, he does not “know to empathize” and then may appear insensitive.
This young man’s insight leads me to believe that many people misunderstand (Simon Baron-Cohen’s) “theory of mind” deficiencies in people with autism as a lack of empathy. “Theory of mind”, or ToM, is the theory that we have the capability to attribute mental states to ourselves and to others (or, as the saying goes, to put ourselves in another’s shoes). Theory of mind ability constitutes the first step in empathy. While people with ASDs may struggle with theory of mind ability (probably due to a lower-than-usual amount of mirror neurons in the brain, which facilitate ToM), they do possess at least some of this ability, and studies have shown that they can and do develop ToM abilities over time (in fact, studies show that many individuals with Asperger’s develop ToM abilities nearly on par with most neurotypical adults by adulthood). Therefore, a person with an ASD (especially as a child) may struggle to understand someone else's mental state, but once they do, they can certainly feel for that person.
Literature that suggests that individuals with ASDs lack empathy is not only incorrect, it is dangerous, because it may lead to the belief the people with autism are sociopathic and not safe to have around. Furthermore, it is simply untrue and undercuts the incredible sensitivity towards others that many people with ASDs possess. Over the last couple of months, I have been conducting research with young adults with ASDs in college, and, as a college professor, I can confidently assert that this group of students have been among the most thoughtful, and empathetic, that I have met.
I have asked individuals with ASDs about empathy, and they have described to me feeling extremely empathetic at times; in fact, several of these individuals have mentioned that they feel “too sensitive” towards others. One young man on the spectrum noted that when he sees someone experience something negative, such as falling down and hurting themselves, he winces as he literally “feels their pain.” However, he noted, his empathy is only evoked when he, at some point, has experienced the same situation or same evident emotion as the person with whom he is empathizing. If someone is experiencing something he cannot relate to or understand from his own past experience, he does not “know to empathize” and then may appear insensitive.
This young man’s insight leads me to believe that many people misunderstand (Simon Baron-Cohen’s) “theory of mind” deficiencies in people with autism as a lack of empathy. “Theory of mind”, or ToM, is the theory that we have the capability to attribute mental states to ourselves and to others (or, as the saying goes, to put ourselves in another’s shoes). Theory of mind ability constitutes the first step in empathy. While people with ASDs may struggle with theory of mind ability (probably due to a lower-than-usual amount of mirror neurons in the brain, which facilitate ToM), they do possess at least some of this ability, and studies have shown that they can and do develop ToM abilities over time (in fact, studies show that many individuals with Asperger’s develop ToM abilities nearly on par with most neurotypical adults by adulthood). Therefore, a person with an ASD (especially as a child) may struggle to understand someone else's mental state, but once they do, they can certainly feel for that person.
Literature that suggests that individuals with ASDs lack empathy is not only incorrect, it is dangerous, because it may lead to the belief the people with autism are sociopathic and not safe to have around. Furthermore, it is simply untrue and undercuts the incredible sensitivity towards others that many people with ASDs possess. Over the last couple of months, I have been conducting research with young adults with ASDs in college, and, as a college professor, I can confidently assert that this group of students have been among the most thoughtful, and empathetic, that I have met.
Thursday, January 14, 2010
Special PaReNtS
Children with special needs need special parents. These parents are advocates, specialists of their child's diagnosis, educators for others who need to know and understand their child in order to help their child. These parents rely on everything from medical resources to electronic shoulders to cry on. Parents with children with disabilities need special resources and support systems to help them do the best job they can. On-line support groups and specific blogs can equip families to be the best they can be.
Children with special needs need special parents. These parents are advocates, specialists of their child's diagnosis, educators for others who need to know and understand their child in order to help their child. These parents rely on everything from medical resources to electronic shoulders to cry on. Parents with children with disabilities need special resources and support systems to help them do the best job they can. On-line support groups and specific blogs can equip families to be the best they can be.
Tuesday, January 12, 2010
The IEP, or "Inadequacies Effectively Presented"
By VICKI FORMAN
June 22, 2008
Each year in early June, as my daughter eagerly awaits the end of the school year, with all its parties and victories, and makes plans for summer and friends, I must complete a very different set of arrangements for my son. Before the school year ends, Evan's specialists, teachers, and I gather in a small room on the elementary school campus for his annual Individualized Education Plan meeting. While a balmy June breeze comes through the open door, a team of twelve, including the special education director, principal, and myself assess Evan's year in terms of goals and progress, success and failure.
Yes, it's the inevitable (and sometimes dreaded) IEP, a staple of special education everywhere. There's an anonymous Dr. Seuss parody of an IEP that makes its way around inboxes this time of year, one that accurately describes a parent's mood in the face of this annual meeting and assessment. In the parody, a voice akin to that of the Cat in the Hat proclaims,
I do not like these IEPs
I do not like them, Jeeze Louise!
We test, we check,
We plan, we meet,
But nothing ever seems complete.
In the special education system in this country, every child (and parent) must undergo this yearly planning meeting, one that can sometimes last many hours. The child's progress is charted, weighed and measured according to quantifiable results. In the first half of the meeting we review the past year's goals to determine whether or not the child has met them. In the second half of the meeting, the team creates goals for the following year. The process is both exhaustive and exhausting, and I have yet to meet a parent who emerges from these planning meetings without a sense of both victory and defeat. Victory for what the child has accomplished, and defeat for how much more is ahead.
~
For me, the cruelest twist of the IEP is that the kids who falter most under measurement are the ones measured so often, and with such rigor. My daughter, in general education, gets three report cards a year, with one parent-teacher conference thrown in for good measure. My son, who comes up short on nearly every yardstick except the happiness quotient, has a twenty-page document that follows him throughout his day. Even if I wanted to pretend for a moment that my son isn't a walking bundle of deficits, the IEP brooks very little denial.
The IEP goals we create in our meeting each June become the backbone of Evan's educational day, and many activities are geared towards meeting those goals. "Will engage in cooperative learning activity with one peer over the duration of the activity one time per day for one of out of three trials," structures Evan's free time. A good day is one in which he meets that goal (with minimal prompting); a not-so-good day is one which there has been "some" or "little" progress towards the goal. Quarterly, numerical reports come home that rank his progress, with a "5" being the brilliant "This goal has been met," to a "3" offering the ominous "Progress has been made towards this goal, but goal may not be met by the time the IEP is reviewed." Even worse of all is the dreaded "2": "Progress is not sufficient to meet this goal by the time the IEP is reviewed. Instructional strategies will be changed." Ouch.
~
The success and failure at the heart of the IEP process inspires the anxiety and dread I feel in the same balmy June days that bring restless anticipation to my daughter and the end of her school year. The days leading up to the IEP are tense as I look back over the previous year's goals and objectives. There is often an email flurry about the following year's goals. Sometimes there are changes in classroom setting or routine or personnel. No matter what, once we are all in the room together, with the plan before us, there is no getting around the issues of progress, success, or failure.
In our school district there comes a point in the meeting when we must read aloud the previous year's goals and take official note of whether or not my son has met them. This would be a time where I feel inclined to put my fingers in my ears and sing nonsense syllables, hoping to avoid the truth. Except that I know, from all the documentation and progress reports I've already received, exactly how the story goes. Some years the tally is impressive. We read the goals and the service providers announce that they have been, "Met, met, met, met."
Others, not so good. "Well, we worked on this goal a lot, and he got the first part of it, but not the whole goal, and he needs lots of prompting, so I'd give him a three out of five and say, um, partially met." In the years Evan fails to meet his goals, I often wonder, "Why do we even bother? What's the point?"
This year's IEP meeting was one of those mixed bags. Evan was happy to be at school. He made an excellent transition to a new classroom, teacher, and fellow students. All the social goals that have to do with the bigger picture? Evan met them like a champ. Academically? Not so good. Didn't learn to match shapes or accurately trail a line of Braille. Still can't give, when asked, "Just one." Some progress on speech but only partially met his assistive technology goals.
The news was sobering. As with almost every IEP, Evan's inadequacies had been very explicitly presented. Even so, as we left the meeting, I resolved to focus on his success: Evan learned his way from the classroom to the cafeteria and sat at the benches during lunch like a big kid. He got to know a new group of friends and sat in circle time with the kindergartners. Maybe he didn't learn to track Braille, but he did figure out how to turn the pages of a book. If we weren't measuring him every day, with a twenty page document, we could honestly call the year a resounding success.
Perhaps in some ways the IEP process is full of defeat, but for every defeat there can also be a victory. This year as I left the IEP meeting I set my own goal: I would not dwell on Evan's limitations -- those goals only partially met or not met at all -- but on what he had achieved. I would try to meet that goal 80% of the time with minimal assist. If I were to give myself a progress report, I'd say I measured a three out of five. With room for improvement.
By VICKI FORMAN
June 22, 2008
Each year in early June, as my daughter eagerly awaits the end of the school year, with all its parties and victories, and makes plans for summer and friends, I must complete a very different set of arrangements for my son. Before the school year ends, Evan's specialists, teachers, and I gather in a small room on the elementary school campus for his annual Individualized Education Plan meeting. While a balmy June breeze comes through the open door, a team of twelve, including the special education director, principal, and myself assess Evan's year in terms of goals and progress, success and failure.
Yes, it's the inevitable (and sometimes dreaded) IEP, a staple of special education everywhere. There's an anonymous Dr. Seuss parody of an IEP that makes its way around inboxes this time of year, one that accurately describes a parent's mood in the face of this annual meeting and assessment. In the parody, a voice akin to that of the Cat in the Hat proclaims,
I do not like these IEPs
I do not like them, Jeeze Louise!
We test, we check,
We plan, we meet,
But nothing ever seems complete.
In the special education system in this country, every child (and parent) must undergo this yearly planning meeting, one that can sometimes last many hours. The child's progress is charted, weighed and measured according to quantifiable results. In the first half of the meeting we review the past year's goals to determine whether or not the child has met them. In the second half of the meeting, the team creates goals for the following year. The process is both exhaustive and exhausting, and I have yet to meet a parent who emerges from these planning meetings without a sense of both victory and defeat. Victory for what the child has accomplished, and defeat for how much more is ahead.
~
For me, the cruelest twist of the IEP is that the kids who falter most under measurement are the ones measured so often, and with such rigor. My daughter, in general education, gets three report cards a year, with one parent-teacher conference thrown in for good measure. My son, who comes up short on nearly every yardstick except the happiness quotient, has a twenty-page document that follows him throughout his day. Even if I wanted to pretend for a moment that my son isn't a walking bundle of deficits, the IEP brooks very little denial.
The IEP goals we create in our meeting each June become the backbone of Evan's educational day, and many activities are geared towards meeting those goals. "Will engage in cooperative learning activity with one peer over the duration of the activity one time per day for one of out of three trials," structures Evan's free time. A good day is one in which he meets that goal (with minimal prompting); a not-so-good day is one which there has been "some" or "little" progress towards the goal. Quarterly, numerical reports come home that rank his progress, with a "5" being the brilliant "This goal has been met," to a "3" offering the ominous "Progress has been made towards this goal, but goal may not be met by the time the IEP is reviewed." Even worse of all is the dreaded "2": "Progress is not sufficient to meet this goal by the time the IEP is reviewed. Instructional strategies will be changed." Ouch.
~
The success and failure at the heart of the IEP process inspires the anxiety and dread I feel in the same balmy June days that bring restless anticipation to my daughter and the end of her school year. The days leading up to the IEP are tense as I look back over the previous year's goals and objectives. There is often an email flurry about the following year's goals. Sometimes there are changes in classroom setting or routine or personnel. No matter what, once we are all in the room together, with the plan before us, there is no getting around the issues of progress, success, or failure.
In our school district there comes a point in the meeting when we must read aloud the previous year's goals and take official note of whether or not my son has met them. This would be a time where I feel inclined to put my fingers in my ears and sing nonsense syllables, hoping to avoid the truth. Except that I know, from all the documentation and progress reports I've already received, exactly how the story goes. Some years the tally is impressive. We read the goals and the service providers announce that they have been, "Met, met, met, met."
Others, not so good. "Well, we worked on this goal a lot, and he got the first part of it, but not the whole goal, and he needs lots of prompting, so I'd give him a three out of five and say, um, partially met." In the years Evan fails to meet his goals, I often wonder, "Why do we even bother? What's the point?"
This year's IEP meeting was one of those mixed bags. Evan was happy to be at school. He made an excellent transition to a new classroom, teacher, and fellow students. All the social goals that have to do with the bigger picture? Evan met them like a champ. Academically? Not so good. Didn't learn to match shapes or accurately trail a line of Braille. Still can't give, when asked, "Just one." Some progress on speech but only partially met his assistive technology goals.
The news was sobering. As with almost every IEP, Evan's inadequacies had been very explicitly presented. Even so, as we left the meeting, I resolved to focus on his success: Evan learned his way from the classroom to the cafeteria and sat at the benches during lunch like a big kid. He got to know a new group of friends and sat in circle time with the kindergartners. Maybe he didn't learn to track Braille, but he did figure out how to turn the pages of a book. If we weren't measuring him every day, with a twenty page document, we could honestly call the year a resounding success.
Perhaps in some ways the IEP process is full of defeat, but for every defeat there can also be a victory. This year as I left the IEP meeting I set my own goal: I would not dwell on Evan's limitations -- those goals only partially met or not met at all -- but on what he had achieved. I would try to meet that goal 80% of the time with minimal assist. If I were to give myself a progress report, I'd say I measured a three out of five. With room for improvement.
Friday, January 8, 2010
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 by people 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.
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 by people 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.
Thursday, January 7, 2010
WHAT IS A PASSION? According to William Stillman, author of Autism and the God connection, it is the topic or subject area in which your child with autism is absolutely and enjoyably absorbed is his passion. Given her druthers, she would spend all her free time reading about, drawing, talking about, watching on television, researching on the Internet, or reenacting this topic. You may also hear passions referred to as "special interests". Some examples of areas of passion for any number of kids with autism include, but are not limited to, the following:
*computer games
*dinosaurs
*cartoon characters
*specific films
*music / musical interests
*toys / specific toys (e.g. with sounds, lights, texture, etc.)
*famous persons / significant persons
*computer games
*dinosaurs
*cartoon characters
*specific films
*music / musical interests
*toys / specific toys (e.g. with sounds, lights, texture, etc.)
*famous persons / significant persons
Subscribe to:
Posts (Atom)
