Have you ever wondered what it’s like for parents
raising children with disabilities? If so, you need to read “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 a disabled
child is among the most painful experiences that a person can confront. After working with parents of the disabled
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 about our basic 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, 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 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 first encountered parents of children with
disabilities in the early 1970’s. Twelve
mothers were gathered to work on relevant issues. I was the group’s
facilitator. I began the group using traditional group psychotherapy methods,
an approach designed to intervene on psychopathology. That approach did not work for 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 ways 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 feelings 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 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 disabled 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 derail a parent’s fundamental, heart-felt 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 disabled 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 one’s 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 the 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 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 failure 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 re-emerge
again and again, as often as the parent needs to experience it. Anxiety generally follows denial, but it can
follow other 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 wellbeing 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 own dreams
shattered by their child’s 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 of their subculture (their family, neighbours, church, schools,
or friends) sent out a consistent message: the feelings of grieving are not
acceptable! Others foundered because
they were stuck emotionally before they had their disabled 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:
Denial
People who deny are considered stupid, obstructionist,
dull or deliberately irritating by many who have to deal with them. None of that is true. Parents of disabled children manifest denial
as a normal course of trying to deal competently with loss. It is impossible to
live life fully while maintaining an awareness of the awful things that can
happen to other people. Most people
routinely shield themselves with such thoughts as: “The terrible things that
happen to other people can’t happen to me, because…” 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.
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 a disabled
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 meditation, or to use alcohol
as a “solution” for the “problem” of anxiety.
The un-solutions 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, education, 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.
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 confronted with an
ongoing 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 [or a catastrophic loss, when the
loss cannot be corrected, and you are left with something different in the
place of what you’ve had e.g. a disabled child], 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 a disabled
child, or about “over protectionism,” the gut-wrenching fear of permitting
their disabled 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 loss.
Guilt
Parents of disabled 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 feelings 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 disabled 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, overall, 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
punishment 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, they have a disabled
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 the explanations. Guilt “explains” the unexplainable.
Human beings begin 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 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 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.
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 a disabled child, whatever definitions they held for
competency, capability, value, and potency usually no longer apply. How does a father or mother feel competent
when he or she has a profoundly disabled son or daughter? They cannot use the measures of peers, like
having a child graduate from college, finding a job, getting married, becoming
grandparents. What is the worth of a
father who cannot “fix” what is broken in his disabled son or daughter. Out of this struggle of defining one’s worth
come the frightening feelings of helplessness, hopelessness, and haplessness
[and sometimes isolation]. 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 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.
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 [catastrophic] 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 a disabled child: “Why me, why not you!”
Implicit in the question is the notion that here must be good reason
that such a thing happens to one parent and not to another. A parent’s 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 experience’s 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 some-thing.
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 disabled 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, then it must be unreasonable to feel anger toward the
child, even though one does! The
conflict between what parents feel and what they 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-disabled siblings
of the disabled 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 behaviour 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 injustice.
The parent of a disabled 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 parents’ worldview. 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 fairness and justice 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 now see 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 had a
child with impairments that I began to take 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.
Copy-It-Right
Permission is granted to copy this article when
distributed in its entirety to parents and/or professionals without charge.
Inclusion in publications requires written authorization. For more information
about the work of Dr. Ken Moses, contact:
Ken Moses, Ph.D., P.C.
