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 CHAPTER 8

Family- and
Relationship-Centered
Principles and Practices

Jeree H. Pawl and Lucia A Milburn

This chapter is concerned with the basic principles relevant to understanding

the mental health of infants and toddlers and practices affected by that under­
standing. In particular, it is concerned with the application of those principles
and practices to the field of early intervention. All individuals who work with in­
fants and toddlers and their families have some degree of impact on their men­
tal health. Depending on how ongoing and important that involvement is, the
impact matters more. The field of early intervention certainly qualifies in this
regard. The practitioners' expertise and their interpersonal impact fall within
the mutually influencing relationship context that surrounds each child. Exactly
where practitioners fit within this context will determine how and in what ways
they affect a child's emotional well-being and development directly and indi­
rectly. All those who work within and identify with the very broad field of infant
mental health, or "the infant-family field" as it is sometimes called, hold this
emotional well-being of the child as a concern, whatever their particular field.
The chapter begins with a brief description of the basis of this shared
infant-family focus and an outline of the various relationships involved. "Fam­
ily" and its nature, structure, and functions are discussed. The primary focus of
the chapter begins with a discussion of the response of families to a child's dis­
ability. Issues of grief, adaptation, coping, and other pertinent processes are in­
cluded and illustrated through examples and vignettes. This includes a discussion
of the implications of disability for the child as well as how that may influence the
parent-child relationship. The discussion then turns to the roles and practices
of practitioners with the family and child. Most centrally, the focus is on what
the practitioner brings to the family in addition to his or her own important ex­
pertise. The ways in which the child and family are affected by the nature of the
parent and professional relationship within which the services are delivered are
the essential focus. Examples and vignettes are used to help illustrate and bring
to life the issues and considerations raised regarding the importance of the
practitioners' relationships to families.

191
192 Pawl and Milburn

THE MENTAL HEALTH OF INFANTS AND TODDLERS

The most basic and widely accepted principle regarding the mental health of
infants, toddlers, and preschoolers is that their mental health itself stems in im­
portant ways from the nature and quality of their most significant relationships.
In transaction with the infant's biological and genetic potentials, those relation­
ships create the shaping sources of the child's information and experience. They
contribute to his or her sense of self and of others. They are potent determin­
ers of how a person feels about him- or herself, his or her sense of having an im­
pact on the world, and what his or her expectations of the world can be. These
understandings, learned in prima1�y relationships, are powerful contributors to
his or her emotional development. This accepted view is based on many years
of observations, research, and practice. It has been the basic, driving, shared
understanding across the inclusive field of infant mental health. Its origins
arose from a compelling curiosity about how a human being becomes who he
or she is. The history of this very lengthy discussion is a rich one. At this point
in time, those most focused on infancy and toddlerhood find the complicated
answer in the child's birth potential in transaction with his or her significant re­
lationships. This includes the reality of individual differences, the major impor­
tance of which lies in the ways in which the world is experienced differently.
How the world of experiences comes into each person and assumes meaning is
wholly unique. By the same token, each infant affects the world uniquely. No
child is like any other; neither does any child hold the same meaning for his or
her primary others. Each child's relationships and shaping experiences are
unique. It is the acceptance of this principle that underlies a family and relation­
ship focus as a naturally occurring aspect of early intervention.

The Family
The cultural construct of family is usefully defined as the intimate, interpersonal
aspect of the sociocultural surround in which a person develops. A child both is
influenced by and influences that surround in profound ways. For some chil­
dren, this experience is a continuous, consistent one. For others, it is a dis­
continuous experience sometimes involving a complete change in family. For
most, membership changes over time. The term family covers a large range of
circumstances. How stable is it? Who decides who belongs? Are some people
included by virtue of function who might not at all be included by designa­
tion? There are formal and informal kinship systems, any of which may provide
the essential functions of the family. There are temporary caregivers for chil­
dren who function in that role and who may provide a great deal of those things
 Family- and Relalionship-Centered Principles and Practices 193

expected of "family" or very few. Children with disabilities reside in all kinds of
families and in all kinds of circumstances.
It is through the functions of family that the people who constitute a fam­
ems in i ily for a particular child can be known. Most often, the biological or adoptive
ttionships connections of a child determine his or her family. It is the parent or parents,
e relation the siblings, the grandparents, and other relatives who may provide the basic
nee. The}i nest of relationships in which the child is embedded and thus perform the pri­
:letermino mary functions. All of them have an interest in the child's well-being, and many
ng an im. feel a responsibility for it. All feel a sense of important connection, a sense that
Je. These the child belongs. Certain individuals are responsible for providing the child's
butors to daily care and providing shelter and food. The underlying obligation and func­
my years tion of an adult member of a family is to provide protection for the more vul­
nerable members. In addition to the family providing basic, physical nurturing
to a child, it simultaneously provides socialization through the qualities of its
care, including both psychological and social development. A family, whoever its
members, should provide a crucial sense of belonging that contributes greatly
to a sense of personal and social identification.
cant re- The outcomes depend on the nature of the family and the nature of the fam­
· impor­ ily's interrelationships. It matters how roles are conceived and how they are ful­
erently. filled. It matters what the pervasive modes of communication are. It matters what
ming is the structures of power are within the family. These variations may constitute
ely. No simple differences, or they may constitute failures in function. Singularly impor­
· his or tant is what the meaning of a family is to its members, what effects that has, and
:es are what dispositions the members of the family hold toward one another. Families
lation- are typically conceptualized as systems and subsystems of human beings who are
bound together by their sense of connection or acute sense of disconnection and
who mutually influence one another to a highly significant degree. Families share
194 Pawl and Milburn

Impact on the Family

Attitudes Toward Disability
The concept of disability, like family, is a sociocultural construct. Over time and
in different places, what is perceived as a disability varies. In the tragic story of the
cultural misunderstandings between a Hmong family and the medical estab­
lishment, chronicled in The Spirit Catches You and You Fall Down (Fadiman, 1997),
a child who has a severe seizure disorder is believed by her family to embody a
powerful spirit. Her parents are unwilling to subdue that spirit with powerful
medications, feeling fortune has honored them with such a child. In the 19th
century, a particular gene for deafness was so common in Martha's Vineyard and
the population so isolated that nearly one fifth of the citizens were deaf. Deaf­
ness touched nearly every family. Everyone Here SjJohe Sign Language (Groce, 1988)
told the story of a community in which deafness did not represent a disability.
Similarly, one individual may perceive his or her "disability" as disabling, whereas
another may not. Accordingly, one cannot predict the impact of a particular
disability on a particular family without learning about their history, values,
hopes and dreams, cultural context, and social environment (see Chapter 10).

Attitudes Toward Parents

Since the 1950s, there have been very significant shifts in attitudes toward fami­
lies, especially parents, of children with disabilities. These shifts are represented
in a social context that has become more supportive and more empathic over
time. Ferguson (2002) described the changes in attitudes toward disabilities in
terms of their perceived source. Well into the 20th century, parents were routinely
blamed for a child's disability; the children were removed to institutions and the
parents scorned. By the middle of the century, parents were still held respon­
sible for their children's psychological problems, including autism, but they
were not held responsible for disabilities that were understood to have a genetic
or neurological basis. Instead, the focus came to be on the harm done to parents
by their children with disabilities. Within this latter view rested the overzealous
interpretation of any parental response, no matter what it was, as evidence of
parental psychopathology that demonstrated the irreparable harm caused by the
child's disability. Olshansky (1962), Moses (1985), and others have helped to move
this view of parental response toward a greater appreciation of the typical, un­
derstandable reaction that any person might have to a devastating event. In ad­
dition, a solely dyadic mother-child focus shifted to a more appropriate aware­
ness of the interlocking relationships of the family and its surroundings. This
consideration of family circumstances, economic and social as well as the pres­
ence and quality of responsive services, flourished. Including family systems ap­
proaches led directly to the consideration of resilience, coping, and adaptation.
 Family- and Relationship-Centered Principles and Practices 195

The literature on the contributions of many variables to the impact on the family
is vast.

Parental Reactions to a Child with a Disability

Children with disabilities are born into every variation of contextual factors. The
impact of the child's disability will depend on the nature of that disability and
this very complex surround. There is general consensus that disability presents
a significant stress. Most parents are devastated when their child is identified as
having developmental disabilities. Typically, a great deal of immediate anxiety
is provoked, as well as prospective worry. Unique as each parent is, depression
also is common in the early months, especially in mothers. If diagnosis occurs
at birth, then the fact of a child's birth remains paramount, but the birth is ac­
companied by shock and a sudden loss of the fantasies that are a usual part of
parents' experiences during pregnancy. Prospective mothers and fathers rou­
tinely conjure images of their unborn child. They dream about how this child
will be and who this child will become, not only for those first moments of meet­
ing but for the future as well. Such an imagined, anticipated infant is always
without flaw, unconnected to worry or stress or any of the real inevitabilities of
life. This is singularly true of a first infant to parents who have had little reason
to be anxious. What is important is that without the presence of a disability those
fantasies are shifted or dislodged in modest ways and are usually gradually re­
placed and adjusted. v\Then a disability is present, those fantasies are significantly
assaulted immediately and in painful ways. In the same way, when a diagnosis
occurs later, the real child whom one knows seems suddenly changed or lost
and some expectations feel no longer possible. This early adjustment is complex
and different for every parent, but it is always challenging and usually painful.

Katie's son Kevin was born with Down syndrome, which was diagnosed
shortly after delivery. Doctors later explained to her the ways in which
he is different: his facial features and low muscle tone and the certainty
that he will likely have mental retardation. Katie is unable to see the
family resemblance that is also there: his red hair and freckles. She says
that all she can see when she looks into his eyes are the features of
Down syndrome.

One can expect a range of wholly typical intense reactions, which are ex­
pected to accompany the grieving of a significant loss. In addition to anxiety
and depression, these typical reactions may include bewilderment, anger, guilt,
and denial. These emotions can be so intense that they are overwhelming and
disorganizing to a parent. There can be a sense of being untethered as though
everything that was depended on and predictable is not recognizable or avail-
196 Pawl and Milburn

able. Loneliness and alienation are frequently experienced, as if one is no longer

a part of mainstream life. None of this is necessarily pathological. It is an over­
simplification to think of these reactions as stages in a grief cycle. They are emo­
tional states that shift, mix, and cycle in and out of the foreground of feelings.

Uncertainty About the Future

Families of young children with special needs and disabilities must tolerate an
enormous amount of uncertainty because it is rarely clear in the early years just
how their child's development will progress. This ambiguity may carry hope, but
it also carries anxiety. Parents who come together in support groups tend to
share very similar concerns with one another� regardless of the cause or degree
of developmental delay. Typically, they are concerned about how their family is
being affected by the extra demands and stress in the present and about what
will happen in the future. It is not safe to assume that children in early inter­
vention programs will become independent adults; many will not. This ominous,
unanswerable question may raise doubt about whether the family's resources
will be sufficient now and in the future to provide for the child's needs.

Sharon complains that her husband is spending more and more time at
work. She feels alone and abandoned at home with her son and the
many extra responsibilities she has because of his developmental de­
lays and his many medical problems. She feels unloved and emotion­
ally unsupported by her husband. She fears that he is intentionally es­
caping the situation by spending so much time at work. When they begin
to talk together and she makes an effort to listen to his experience, she
finds that he is overwhelmed with worry that he will not be able to pro­
vide adequately for his family if their son does not outgrow his delays.
Earning the money for the family is the way he feels useful to the fam­
ily, the way that he can help them to be prepared if their fears come
true. He feels exhausted by the long hours, unappreciated, and resent­
ful of coming home to complaints about how much he works.

Although their children are still infants, many parents are already worrying
about who will care for the adult child when they die. They worry about the im­
pact of the disability on their other children, especially whether the siblings are
getting the time and energy from them as parents that they want to give.

Mary, who tended toward anger and resentment in other aspects of

her life, initially shocked her parent group by saying aloud one morning
that she sometimes was tempted to drop out of the early intervention
program altogether. No matter what efforts she made to teach her son,
she said he would always "be retarded anyway." At least the time
would be productive if it were spent helping her other son, who was
 Family- and Relationship-Centered Principles and Practices 197

"normal." With help from the facilitator, the group was able to connect
to their own agonizing dilemmas about meeting the needs of their
other children.

Why Did This Happen?

Most parents struggle with issues of guilt and blame. No matter what their ex­
isting beliefs about religion and no matter how they have defined and derived
meaning in their lives, the question arises, "Why did this happen to me?"

Wanda was a second-time parent in an early intervention program. Her

older son had begun to have seizures shortly after birth, and now in jun­
ior high school he was in a wheelchair and had significant develop­
mental disabilities. She had waited many years to have another infant
and was thrilled to have a girl, Teresa. While smiling for the camera at
her first birthday party, Teresa suddenly had a seizure. Wanda's world
was thrown into chaos. She had always believed that her son's seizures
were caused by the immunizations that he had gotten at 4 months of
age. She blamed the doctors for not warning her of the possible side
effects of the shots. Wanda concluded that having Teresa go off of for­
mula and switch to regular milk in the days before Teresa's birthday
must be the explanation because doctors had warned her about pos­
sible allergic reactions. She tormented herself for not preventing the
grave harm to her children. Although an inherited seizure disorder was
a far more likely explanation for her children's difficulties, Wanda was
wracked with guilt.

Mothers particularly may wonder about all kinds of other personal mis­
takes or "sins" they fear may have caused their child's problems, however un­
likely they may be. All of the following possibilities have been reported in par­
ent groups: drugs, legal or not, past or present; use of household chemicals; too
much exercise; too little exercise; not eating well enough during pregnancy; not
going to the hospital soon enough for delivery; not giving detailed enough in­
formation or being assertive enough with a doctor; a minor fall early in the
pregnancy; marrying the wrong man; an extramarital affair; lying as a child; and
many others. The common theme is not just guilt but loss of control. Any illu­
sion of controlling even the most important events in parents' lives feels shat­
tered. Parents would give anything to have the power to have prevented the
problem. In the beginning, guilt may be a small emotional price to bear in order
to retain the illusion of control. Without guilt, the world now seems unsafe, un­
fair, and unpredictable, and learning to live in such a world presents a great exis­
tential challenge. Blame takes slightly different forms. The following two vignettes
illustrate two common themes.
198 Pawl and Milburn

Judy and Evan are Chinese American, and their son has an undiagnosed
but very significant developmental delay. Their parents and especially
their grandparents retain many of their traditional Chinese beliefs about
the cause of disabilities. Because Judy and Evan are afraid that their
parents and grandparents will feel either responsible or will blame the
other family for historical indiscretions or misdeeds, they have not told
any of their relatives about their son's problems. They are lonely, iso­
lated, and depressed holding the information alone. In addition, Judy
struggles with her own bicultural heritage and wonders at times if the
age-old beliefs might be true. She is also afraid that Evan may believe
the same thing.

Blame within families may cause additional unnecessary suffering unless it is

dealt with constructively and understood.

Ingrid is a stay-at-home mother who is responsible for all of the medical

and therapy appointments for her daughter, Amy. She is tired most of
the time, cries frequently, and feels hopeless that Amy will grow up in a
way that she can feel good about. Amy's father, Carl, feels quite power­
less to help because he is away at work all day, and he is having trouble
accepting the idea that Amy's problems would not resolve if Ingrid just
spent more time playing with Amy and doing the exercises that the
therapists recommend for her. He makes suggestions that feel critical to
Ingrid. She feels blamed by Carl for Amy's ongoing problems, and when
Carl thinks about it, he says that he does want to believe that Ingrid
could be doing more to "fix" Amy.

Some other parents endure spiritual crises in which they begin to question
their religious faith that has sustained them. Guilt and blame are both evident
in the following story.

Mike says that he is very angry with God. He feels betrayed by God, who
allowed his son to suffer despite Mike living in accordance with all of
what he understood to be God's expectations of him. Could he have
been wrong, either about God or about his own life? He is suddenly un­
able to pray. Mike has always believed that God is just and kind. No
God of his would allow his son to suffer the pain of many surgeries and
the unbearable tragedy of never being able to walk or talk. He knows
that God may be testing him, but the thought does not satisfy his anger
or comfort him in any way. He feels desolate and confused.

One can see from these examples that parents of children with develop­
mental difficulties may, as a part of the initial adjustment process, experience
 Family- and Relalionship-Cenlered Principles and Practices 199

many profoundly disturbing emotions that may affect their feelings about them­
selves, their relationships with family and friends, and their spiritual grounding.

Depression
A significant percentage of parents, especially mothers, of children with dis­
abilities are clinically depressed in the months following the diagnosis. Depres­
sion is within the expectable range of responses. Although it is not within the
scope of practice for practitioners other than those in the mental health profes­
sions in early intervention to treat mental disorders, it is helpful to understand
how depression in a parent may have an impact on their work together. Nu­
merous studies (Carter, Garrity-Rokous, Chazan-Cohen, Little, & Briggs-Gowan,
is 2001; Goodman & Gottlieb, 1999; Lyons-Ruth, 1986; NICHD Early Childcare
Research Network, 1999) have shown that depression in mothers has negative
repercussions for infants. Depressed mothers may not have the emotional or
physical energy to respond to their infants' signals as they normally would; nei­
ther do they talk as much to their infants. As long as depression continues, the
infant is in jeopardy. Depression in general tends to resolve without interven­
tion. Refractory depression tends to be associated with chronic stressors, such
as poverty. Disability may also be such a chronic stressor, and waiting for de­
pression to resolve on its own may be too long for the infant to wait. Depression
can be helped in a variety of ways, including through psychotherapy, support
groups, and exercise and diet. One of the most effective and rapid treatments
for depression is medication. Medications can be prescribed by most medical
practitioners, and many parents have been helped by them. Because depression
is a normal response does not preclude treating it. The family practitioner's con­
cerns are worth raising in this regard with whatever mental health consultant may
be available. When the practitioner has checked the probable appropriateness,
the possibility of treatment can then be raised with the family. Receptivity to the
practitioner's intervention is improved when the depression has been treated.

Daily Stress
Accompanying these concerns is the draining reality of daily life. Often, the
care of a child with a disability is more demanding than the care of a typically
developing child. The routine of getting to numerous therapy and medical ap­
pointments can be very exhausting. Fitting this into whatever schedule previ­
ously existed not only may be difficult but also may necessitate other changes in­
volving everyone in the family. The time and energy required to understand and
work with systems that provide needed services add to this demand. When par­
ents have other children, time and energy for them may be more drastically re­
duced than was expected. Siblings of children with disabilities face special chal-
200 Pawl and Milburn

lenges. Because of the demands on their parents, many experience feelings of

envy of the attention received by the child with the disability. Home visits from
various therapists bringing wonderful toys for the child with the disability to play
with often exacerbate siblings' envy. Everyone in the family is affected. Structures
and roles that have been dependable and regulating are disrupted and must be
renegotiated.

Adaptation
As an individual's typical capacities to manage and contain such complex feel­
ings are sorely challenged, he or she is simultaneously motivated to try to do so.
This is equally true of the processes within the family. Individuals and families
seek cohesion, interdependence, and redefined functional roles. Individuals
who bring longstanding psychological problems to this new stress and families
whose power structures and communication styles are already a source of ten­
sion and discord are less able to engage in coping strategies. More typically, in­
dividuals and families are able to make use of each other and to seek empathy,
understanding, and help from extended family and friends. The receptivity and
ability of family and friends to respond rather than withdraw, as sometimes hap­
pens, are also important. People grieving from any significant loss often report
that the family and friends they most expected to support them are disappoint­
ing in their ability to stay close in the midst of pain. Social support is crucial for
families coping with a child with a disability, and good social support greatly in­
creases the chances of successful adaptation.
There is little question that adaptation begins immediately. All of the ways
in which families begin to take in and manage this event are adaptations. They
are more or less costly, and individuals have little choice in how they respond.
Rather, their coping strategies emerge out of their personalities and their ex­
periences of coping with other stressors in their lives, and much of the process
happens unconsciously.

Jorge and Alison are having a difficult time in their marriage since the
birth of their young son, who has Prader-Willi syndrome. Alison is quite
depressed, and her tears flow easily. She copes by wanting to know all
there is to know a bout Prader-Willi, and she spends long hours on the In­
ternet searching for information, much of which makes her more de­
of p
pressed. She says the future for her will be easier if there are no more ter­
fam{
rible surprises. Jorge is impatient with her for being so sad. He wants her
reas;
to look on the bright side and to have more hope. He is not interested
in the information that she researches. Alison thinks that Jorge is "in de­ have*
nial," and he thinks that she is not strong enough to cope with what has loviri
happened. With help, they gradually come to u nderstand that they gene;
have very different coping styles. He copes by staying in the present in re
 Family- and Relationship-Centered Principles and Practices 201

and protecting his hope. She copes by reassuring herself that she is
learning everything that may help their young son. When they learn to
respect that they are different and to appreciate each other's contri­
butions to the adaptation of the family, the stress in their relationship de­
creases, and they both begin to feel better.

Many parents, such as Jorge, cope with uncertainty by being determined to re­
main hopeful no matter what. Practitioners who know from experience that the
degree of hope held by a parent is unrealistic are sometimes uncomfortable
with it and tempted to influence it by speaking frankly about likely outcomes.
Like Alison, they believe that "being in denial" is a problem. From the point of
view of the parent-child relationship, excessive hope may not be detrimental.
Hopeful people are less inclined to be depressed. A parent who imagines a
brighter future for his or her child experiences that child differently than other­
wise. It is one way that a parent can protect his or her relationship with his or
her child and preserve aspects of the child as the parent gradually comes to see
him or her more clearly. Unless this picture of the child is preventing the infant
from getting services that he or she needs, it serves everyone to leave it intact. If
Jorge, for example, refuses to allow his son to receive physical therapy because
he believes he will walk eventually on his own, then it is important to move him
gently toward a more realistic understanding of his son's condition. Except under
these circumstances, it is better to respect parents' hopeful coping and to let
them gradually adjust over time to the full implications of their child's situation.
Adaptation is an evolving process over time and not a steady state. It is a
process for each individual and family as they learn the meaning that a disabil­
ity has for them, how they can collaborate together in dealing with everyday de­
mands, and most important, how to appreciate and enjoy the child for who he
or she is. This, too, is not a steady state any more than is life itself. Research
demonstrates that families with and without children with disabilities resemble
each other in all of the most significant ways (Ferguson, 2002). They encompass
the range expected in terms of their functioning. It is more helpful to under­
stand them in terms of their strengths and their similarities than in terms of
pathology and difference.
Over time, feelings and attitudes evolve. Experience changes the meaning
of past events. Although the diagnosis of disability is initially traumatic for most
families, parents of children with disabilities treasure those children for the same
reasons that all parents treasure their children. Most also come to feel that they
have learned important lessons about life and about themselves from knowing,
loving, and raising these special children. It is important to add a caveat to these
generalizations about families. Some families do not experience such anguish
in regard to the disability. Sometimes this is because of a religious belief or be-
202 Pawl and Milburn

cause the positive meaning of the child takes immediate precedence over the
meaning of the disability. Other healthy previous children may serve to mediate
the sense and meaning of the disability very significantly. This child is seen as
just one more variation in a family of very different children. This does not pre­
vent a sense of what the child may suffer or miss, but the parental loss is buffered.
As one mother of seven said in reference to her last child, who had a disability,
"He has a world of people right here around him who love him and have fun
with him." This statement reveals how quickly this mother moved to realizing
what was most important for her child. Loving relationships matter most for
every child. It is important for practitioners to understand that each family is
unique but also to appreciate the emotional upheaval that most families expe­
rience. Their usual ways of being as individuals and with each other are dismpted
and stressed. This state increases the significance of the practitioner's role.

Effects of the Disability on Relationships

It is important enough to repeat that the relationships that any child has with
his or her significant caregivers are vital to his or her emotional and social
health. The relationship between infants with special needs and their parents is
no different in this regard. These relationships, however, can be more vulnerable
to complications. Some of these complications arise from the infants themselves.
It is from the ordinary language of caregiving that infants and parents learn
about each other. At best, every new parent is faced with a mystery. The infant
makes some sort of sound or cries and the parent must decide what will be the
appropriate response. The infant may be hungry, tired, or cold, or he or she may
have gas pains or some other bothersome sensation. The parent must learn what
is being communicated. Over time, the parent will respond such that the infant
will communicate more clearly. This happens by trial and error in the context
of devotion. These repeated transactions are mutually instructive. The parent
does get better at recognizing the infant's expressiveness, and the infant's cues
become clearer as a result. This early transactional process is emblematic of the
reciprocity that is typically expectable as development proceeds. These processes
are unique to each parent-child pair and more or less easy.

The Infant's Contribution

When the generally expectable contributory role of the infant is somehow im­
peded or prohibited by the nature of his or her disability, the mutual adaptation
necessary can be very challenging.

Thirteen-month-old Simon has severe cerebral palsy, which makes it im­

possible for him to sit independently or crawl. His cognitive develop-
 Family- and Relationship-Centered Principles and Practices 203

ment, however, appears to be normal. Simon is experiencing extreme

diate separation anxiety from his mother, Davito. He wails whenever she sets
:n as him down, and if he had his way, he would be held all of the time.
p re­ Davito is exhausted and frustrated by this "tyrant" of a child. Simon ' s in­
red. creasing cognitive awareness is not matched by his physical devel­
ility, opment, which in typica l toddlers allows them to follow their mothers
f un about. In addition, he is quite curious about his world and is not satisfied
by viewing the world from a horizontal position. His solutions to these dif­
ing
ficulties are causing great stress to his mother.
for
v is
The infant's difficulties may make the creation of a positive, rewarding re­
Je­
lationship more difficult. These impediments may certainly be overcome, but they
ed
are impediments. If feeding is problematic, then all of the feelings around feed­
ing that are joyful and satisfying are affected. They are replaced with awkward­
ness, frustration, sadness, helplessness, and sometimes anger and despair. For­
tunately, they are also usually accompanied by determination, creativity, close
observation, and love. It is vital to consider how a particular disability affects the
h relationships between this child and his or her parents and other caregivers.
:1 How does the disability itself transform satisfaction that is usually so automatic
into something that is missing or slow to arrive or challenging to achieve?

Brianna was a floppy infant who had great difficulty achieving all of her
motor milestones. As a n infant, she had problems coordinating suck
and swallow, and she sometimes choked a little on her milk. When she
began to eat some solid foods, h er tendency to choke became much
more serious. Several times she choked so badly that her mother, Shelly,
had to a dminister first aid for choking. U nderstandably, Shelly became
very nervous about feeding Brianna, who reacted to her mother's anx­
iety and probably her own fear by becoming resistant to eating. Shelly
began to dread feeding Brianna and begged her husband to d o all of
the meals. This solution put enormous stress on their marriage, and Shelly
felt increasingly inadequate as a mother.

Many other examples can be given. Visual impairments may make eye con­
tact difficult or impossible, and eye contact evokes a powerful sense of connec­
tion (Fraiberg, 1 977) . Muscle tone problems can render the usual pleasures of
holding the infant less gratifying. Mental retardation may dampen the excite­
ment of play. The difficulties in social interaction that are a problem for chil­
dren in the autistic spectrum can create in a parent a sense of distress and dis­
connection. All of these problems undermine central capacities used in seeking
partners and in building relationships. Typically, all partners in the parent-infant
relationship are eager, ready, and able to engage in their sides of the dialogues.
These usual expectations may be far harder for an infant with special needs to
204 Pawl and Milburn

fulfill. It is not uncommon for parents to report that somehow they just do not
enjoy their infants quite as much as they had expected or that they do not quite
know who they are.

The Parent's Contribution

Unfulfilled expectations may also originate from a parent who cannot as read­
ily engage and find the infant.

Monica's son, Jamie, had received a diagnosis shortly after birth of a

rare chromosomal disorder that implied certain mental retardation and
ongoing medical problems. Jamie's therapists thought he was an ap­
pealing and responsive infant. They were frustrated by Monica's lack of
enthusiasm and watched with dismay as Jamie tried and failed repeat­
edly to get her attention with squeals and smiles. They found themselves
responding for her by picking him up and talking to him to prevent him
from giving up his efforts. Monica cried a lot and was tired all of the
time. She confided to the parent support group that she wished she
could start over with her pregnancy and have it turn out right. She said
that she sometimes imagined giving Jamie up for adoption and even
had wished at times that he would die. Jamie 's physical therapist rec­
ognized that Monica was very depressed. She suggested to Monica
that she ask her doctor about treatment for depression, and Monica
followed through. A few months later, Monica was feeling dramatically
better and was taking an antidepressant medication, and Jamie's ther­
apists were greatly relieved by the changes in her behavior. She de­
scribed her experience to the parent group, saying she wished that she
hadn't missed those first months with Jamie.

A parent may not be as emotionally available and as able to respond as he or she

would wish. He or she may feel depressed, and like any person depressed for any
reason, he or she will tend to talk less to his or her infant. The parent may be
more exhausted than usual, or even irritable, and find caring for the infant over­
whelming. Typically, children in early intervention have more than their share of
medical challenges. As a result, their parents have more than their share of dis­
tress from these crises.

Megan was born with a disfiguring cranial-facial syndrome and re­

quired both a tracheostomy and a gastrostomy shortly after birth. In ad­
dition to the trauma of giving birth to a child with a disfigurement,
Megan' s mother, Cathy, was completely intimidated and overwhelmed
by the high level of medical care that her daughter required. Megan
qualified for shift nursing at home, and although Cathy desperately
needed the help, she hated having strangers in her home at all hours
 Family- and Relationship-Centered Principles and Practices 205

of the day and night. On two occasions, Megan's tracheostomy came

loose while Cathy was alone with Megan, and she had to deal with
each life-threatening crisis on her own. Megan was hospitalized re­
peatedly with pneumonia and other ailments. Cathy herself eventually
received a diagnois of post-traumatic stress disorder. Among other
symptoms, she had flashbacks when she drove by the hospital where
Megan had been born.

In summary, parents and their children with special needs face a more emo­
tionally complicated process in forging their relationships. The infant may be
lacking some of the expected and in-born automatic abilities with which to en­
gage his or her parents, and the stresses and anguish inherent in having a child
with special needs may inhibit the parents' availability to the infant. The demands
of caregiving may be greater and the calendar of necessary appointments full.
Some parents have a very difficult time feeling in control and feeling effective
as parents. Self-esteem as a mother or a father can be very elusive. Parents of
healthy and typically developing children derive some of their sense of success
as parents from tracking their children's rapid growth and development. When
a child is unable to accomplish the steps that might lead to mobility, conversa­
tion, or perhaps even comfortable eating, the parents' sense of competence can
be undermined. The impact of a child with special needs on the family has many
dimensions, and it affects each family in unique and complex ways.
The degree of challenge involved for the parents and child in creating re­
warding relationships is a natural outcome of the disability and the adaptation
and coping resources of the family. Yet, striving to effect those ties is essential to
both the child's good emotional development and the well-being of the family
as a whole. The next consideration is the practitioner's engagement with a fam­
ily. What roles do practitioners have in influencing these important family rela­
tionships, and how might they best realize them?

THE RELATIONSHIP OF THE PRACTITIONER WITH THE FAMILY

A Historical Perspective
Since 1 980, the parental role in early intervention has progressed from the par­
ent as an outside observer through parent-as-assistant to the inclusion of parents
as planners and partners as well as recipients of services. This shift in participa­
tion was given strong impetus by the conceptualizing of Sameroff and Chandler
( 1 975) of mutually influencing interactions or transactions. It was further sup­
ported by the work of the Turnbulls and Winton (Turnbull & Turnbull, 1 986;
Winton, 1986; Winton & Turnbull, 1 98 1 ) and many others who emphasized that
206 Pawl and Milburn

family context, family functioning, and degree of involvement are all relevant to ar(
the child's development. an\
This expanded role of the family corresponded to a concerned honoring of thci
the range of factors influencing the child, including the overall social, economic,
cultural, community, and political structures. Different services were found to be Award
relevant to individual families in different circumstances, and a family's percep­ As l
tion of their own needs and wishes for services was increasingly respected. The !
titiq
complexities or processes of individualizing services either in theory or practice thal
are not discussed here. The focus, rather, is on the direct parent-child-practi­ tiotj
tioner relationship. Although the impact of this relationship is the central con­ be d
sideration, paying attention to both general and particular qualities of the in­ tiod
teractions of the child and other significant adults or young siblings is also p rej
pertinent. pro1
This contextual perspective is inherent to many other interventions (not beg;i
designed exclusively for children with disabilities and their families) , the sole This!
focus of which is the quality of the parent-child relationship. These interven­ sionJ
tions, particularly those provided by mental health professionals, serve a range fessii
of parents and children, including those with disabilities. They are specifically :1
designed to effect a change in the parent-child relationship, primarily through mak�
a change in the parent or broader caregiving system. There are various strate­ and �
gies, including psychotherapists doing dyadic, individual, or family treatment; als fo]
structured, videotaped methods using parental self-observation; and protocols mighj
for teaching parent observation. Explicitness with the parents regarding the goal beha1
varies, as do the goals themselves, which range from change in the inner repre­ they ll
sentational world of the parent him- or herself to shifts in family dynamics and wherJ

:;:�pi
patterns of parent-infant interaction. These kinds of interventions are typically
called "infant mental health" interventions.
own cj
'j

An Infant Mental Health Approach in Early Intervention larly e

tant P;
The intent of the approach is to encourage intervention that has an impact on
parent-child relationships, but less directly. It occurs through the efforts of
every early intervention team member acting in a "therapeutic" manner. The
approach described here embeds the "mental health" dimension in the disci­
pline-specific expertise of the practitioner. The shape of the practitioner's work
is determined with the parent. Joint observation with the parent is used to en­
sure the most effective delivery of the service. This, plus the positive utilization
of the impact of the practitioner's role and expertise, directly and indirectly in­
fluences the relationship of child and parent. This is different than having a
change in relationship itself as the sole aim of intervention. The responsibility,
intent, and requirements of each participant's particular discipline expertise
 Family- and Relationship-Centered Principles and Practices 207

are very different. Yet, regardless of discipline, it is the practitioners' attitudes

and style of working with children and families in early intervention programs
that constitute an "infant mental health" perspective.

Awareness of Feelings in Self and Other

As vital as a practitioner's skills are and as relieved as a family is that such prac­
titioners are available, all families would wish that circumstances had not required
that they need such services. From the beginning, a practitioner enters a rela­
tionship that is touched by ambivalence. Negative and reluctant feelings may well
be conveyed whether directly expressed and may be experienced by the practi­
tioner in the first moments of meeting. The practitioner should be aware of and
prepared for this possibility and equally aware of what such an attitude might
provoke in him or her. This need for self and other awareness is there from the
beginning and continues to be an ongoing aspect of the practitioner's work.
This reflective consciousness is not the province of the mental health profes­
sional alone but can be an essential part of the working repertoire of every pro­
fessional who serves on the early intervention team.
This kind of thought process is not unfamiliar. In everyday life, people
make an effort to understand the behavior of others. "Myra acted really distant
and funny just now when we met in the store," someone thinks. Some individu­
als follow a process of sorting through memory and imagination to discover what
might account for Myra's behavior. Others may be instan'tly offended by Myra's
behavior and inclined to be cross and dismissive. Still others quickly assume that
they have somehow offended Myra and begin to brood about it. Most fall some­
where in between these extremes. People see the world through the prism of their
own experiences, and prisms distort in tricky ways. To work fruitfully with oth­
ers, professionals need to know that what they perceive is in some measure their
own construction or projection. They also need to know that they will be simi­
larly experienced. Knowing what their tendencies and attitudes are is an impor­
tant part of self-awareness because they can stand in the way of being able to
imagine what another is experiencing.

The Relational Context

In a professional relationship, quick judgments are avoided and no conclusions
drawn until an attitude of empathic curiosity prevails. True intellectual and emo­
tional curiosity cannot exist without patience and the willingness to wait for
understanding to emerge. This kind of professional curiosity is different from
a friendship and matters differently. The purpose of the relationship is for the
practitioner to be useful to the child and family. It does not exist to be useful to
the practitioner, although both contribute importantly to the nature and qual­
ity of the relationship. The professional bears the greater responsibility for both
208 Pawl and Milburn

an awareness of how the relationship is working, as well as an understanding of

his or her impact and positive contribution to the relationship. The more a re­
lationship is nested in an emotional context, the more likely the qualities of the
relationship are to affect the services. The discipline-specific professional ser­
vices are very significant in themselves, but when all aspects of the delivery of
those services are embedded in the awareness of a relational context, their im­
pact is amplified.
v\Thether shaped consciously by the practitioner, a relationship of some kind
will exist. The issue is to create with the family a relationship that enhances the
practitioner's expert efforts and that has a positive effect on the relationships
within the family. Even if the practitioner is experienced ambivalently, he or she
is always perceived as a powerful and important figure no matter who he or she is
as a person. The role inherently confers power and authority. This child, precious
to this family, is being entrusted to the practitioner's efforts. Perhaps the parent
imagines that the work will fix the child, will be useless, will harm the child, or
all three. Still, the child is incredibly important, and that importance magnifies
the practitioner's power: Recognizing and harnessing tl1at power, a natural power
inherent in the nature of early intervention services, are at the heart of family­
centered practice.

Attitudes of the Practitioner

Initially, the parent is apt to experience the attitudes of the practitioner in terms
of his or her emotional message. Although the practitioner may be distorted by
the parent, he or she must hold attitudes in mind that are helpful, not hurtful.
How the parent "feels seen" and how the parent "feels the child is seen" shape
the parents' perceptions of the child. These perceived affective states are par­
ticularly influential in the early stages of the relationship. Megan Kirshbaum
( 1 999) likened parents' receptivity to practitioners' attitudes at that early and
impressionable period to that of someone in a state of hypnotic suggestion.

As part of the diagnostic process, Cynthia and Ray were shown a pho­
tograph in a medical textbook of a person with the same syndrome as
their child, Hannah. The photograph had a dark rectangle over the eyes,
and the child's facial expression was frightening. For many months, Cyn­
thia had a recurring nightmare in which the face of her own infant
daughter was transformed into the face in the textbook.

What a practitioner says and how he or she says. it matter a great deal. This in­
teraction is not primarily about disability. It is about a child and the parents of
a child. It is not about dissembling or focusing on what is "broken" but is rather
about an authentic response of valuing and respecting the human qualities of
everyone involved, especially the infant.