I had the pleasure of attending a work
shop by Dr. Moses in June 1999. He presented this information with the
aplomb and presence that only he can do. This process is often overlooked
or "swept under the carpet" in the name of not intruding or
"we just treat children". What is so important to realize
is that this process is normal, healthy and actually healing. And, a
parent who is normal, healthy and healing is more able to participate
in the therapy we have to offer. I hope you will take the time to not
only read this article, but examine how you can use this information
in your own life as well as understanding and assisting those around
The Impact of Childhood Disability:
The Parent's Struggle
by Ken Moses, Ph.D.
Dr. Moses is a psychologist who has devoted himself to helping people
deal with crisis, trauma and loss. He is a nationally renowned speaker,
author, and clinician who has focused much of his work on parents
of impaired children and disabled adults. He has faced deaths, life
threatening illness, disabilities, and other major traumas in his
own family and life. He continues to help people sort out their lives
after experiencing loss and struggles with the same issues himself.
Currently, he maintains a private practice limited to the issues of
grieving, and directs Resource Networks, inc.. an organization specializing
in the production of workshops, seminars. consultation and materials
that deal with issues of human growth in the shadow of loss.
"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
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
I began the group using traditional group psychotherapy methods,
an approach designed to intervene on psycho pathology. 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 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
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. lo this day. serves as
the foundation for understanding and working with parents of impaired
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. heart-felt yearning. Disability shatters the
dreams, fantasies, illusions, and projections into the future that
parents generate as pan 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 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 depletion 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
lo 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 acknowledgment.
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 stales 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 stale, 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
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 competently 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..." 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.
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." lo take medication, or to use alcohol as
a "solution" for the "problem" of anxiety. These
^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, 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.
As anxiety mobilizes people to deal with change, fear is a warning
that alarms 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.
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 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,
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 fee] 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 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 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 io reorder. Basically the guilt-ridden person is saying
that they are accepting responsibility for everything. It feels better
lo 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.
A common response to loss often is characterized by profound and
painful sobbing. Parents report that at limes it feels as though the
tears will never slop. 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 growth-ful 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.
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 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
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
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, then 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 twig 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 lo 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', lo 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 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 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
This article by Dr. Ken Moses (now retired)
is reprinted with Permission
WAYS MAGAZINE, Spring 1987