Families, Systems, & Health
2007, Vol. 25, No. 3, 246 –262
Families of Children With Rett Syndrome:
Stories of Coherence and Resilience
For families with children with severe dis-
abilities such as Rett syndrome, it is crucial
that they reach a high level of adaptation to
the continuing challenges they will face
over a long period of time. A number of
factors have been described that from the
outside perspective of experts are supposed
to promote resilience in families living with
disabled children. This article explores re-
silience-related narratives of families who
are living with Rett syndrome. Two types of
resilience narratives were reconstructed, re-
flecting different resources, strategies, and
changes in family beliefs that help families
in the process of adaptation. Although the
findings of this study are limited by the
small sample and selection of families from
a parent self-help organization, they pro-
vide an inside perspective of resilience pro-
cesses. Implications for treatment and
counseling are discussed.
Keywords: Rett syndrome, disability, fam-
ily sense of coherence, resilience, illness
narratives
Correspondence concerning this article should be
addressed to Rüdiger Retzlaff, Dr. sc. hum., Dipl.-
Psych., PP, KJP, Marital and Family Therapy Clinic,
Institute for Collaborative Psychosomatic Research
and Family Therapy, Center for Psychosocial Medi-
cine, Heidelberg University Hospital, Bergheimer
Strasse 54, D- 69115, Heidelberg, Germany. E-mail:
Ruediger_Retzlaff@med.uni-heidelberg.de
246
Copyright 2007 by the American Psychological Association
1091-7527/07/$12.00 DOI: 10.1037/1091-7527.25.3.246
RÜDIGER RETZLAFF, DR. SC. HUM.,
DIPL.-PSYCH., PP, KJP
amilies of children with mental and
F physical disabilities such as Rett syn-
drome face many challenges. Rett syn-
drome was originally discovered in 1965 by
the Viennese pediatrician Andreas Rett
(Hunter, 1999). It is a severe neurogenetic
disorder caused by mutations in the gene
MECP2, located on the X chromosome.
With a prevalence of 1 in 10,000 –23,000, it
almost exclusively affects girls.
Classical Rett syndrome follows four
phases (Hagberg, 1993). After a seemingly
normal prenatal and perinatal history, in
the early phase (6 –18 months), the child’s
development slows down and may even go
backward, with avoidance of eye contact
and loss of interest in toys. The regression
stage (1– 4 years) is characterized by dra-
matic social withdrawal, loss of achieved
purposeful hand skills, failing locomotion,
communication dysfunction, loss of learned
words, frequent screaming spells, cognitive
impairment and stereotypic hand move-
ments such as hand wringing or squeezing,
and impaired intentional movements or
dyspraxia. Head growth decelerates in the
majority of girls. Supportive criteria are
female sex, irregular breathing, abnormal
EEG patterns, hypotonia, scoliosis, hypo-
trophic feet, growth retardation, and brux-
ism (Hagberg, Hanefeld, Percy, & Skjeldal,
2002). The girls are considered mentally
retarded, but assessment of their level of
cognitive development is difficult because
 FAMILIES OF CHILDREN WITH RETT SYNDROME
of the lack of verbal communication skills
and apraxia (Lindberg, 2006). In the third
phase (2–10 years), there is a partial recov-
ery of some of the communication skills,
contrasting with slow neuromotor regres-
sion. The majority of children develop sei-
zures and suffer from muscular dystonia
and major orthopedic problems. Large pro-
portions of the girls remain unable to walk
and are wheelchair bound. In the late
phase, there is a slow decline in motor
skills with increasing orthopedic problems.
Apart from classical Rett syndrome, about
15% of the girls have an atypical form that
only meets part of the diagnostic criteria
like preserved hand skills. At present,
there is no cure for Rett syndrome, and
available treatments are symptomatic and
supportive.
The children have to rely on the support
and love of their families for a large part of
their lifetime. Parents provide care over
many years and are confronted with many
physical, psychosocial, and financial de-
mands. Through the advances of the Hu-
man Genome Project, some questions have
been answered with regard to the origins of
Rett syndrome. The availability of genetic
testing helps families to get medical infor-
mation faster, making it easier to compre-
hend their child’s condition. However, the
question remains as to how families can
manage to balance the demands of the ill-
ness, conflicting needs of the family and its
individual members, and pressures of work
and society and still find ways to live a
balanced, fulfilling life.
To a large extent, scientific studies have
conceptualized the effect of a child’s dis-
abilities on a family as a stressor, a critical
life event, or a burden. Family researchers
with an interest in the impact of stress
have confirmed that parents of children
with disabilities report higher levels of dis-
tress than parents with healthy children
(Dyson, 1991; Kazak & Marvin, 1984;
Kazak & Wilcox, 1984; Roach, Orsmond, &
Barrat, 1999; Yau & Li-Tsang, 1999) across
phases of the family life cycle (Dyson, 1993;
247
Flynt, Wood, & Scott, 1992). Yet even the
most severe disabilities do not necessarily
result in dysfunctional family patterns or
symptoms (Patterson, 1988; Sarimski,
2001; Rolland, 1994).
Family researchers with an interest in
family strengths and resources have con-
sistently found that many families find
ways to adapt and may even be strength-
ened in the course of dealing with the chal-
lenges (Beavers, 1989; Beavers, Hampson,
Hulgus, & Beavers, 1986; Beresford, 1994;
Dyson, 1993; Patterson, 1991; Patterson &
Garwick, 1994; Tunali & Power, 1993). Nu-
merous studies have reported that a con-
siderable number of families develop a pos-
itive outlook on life and good family func-
tioning and adaptation (Frey, Greenberg,
& Ferwell, 1989; Krauss Wyngaarden,
1993; Li-Tsang, Yau, & Yuen, 2001;
Margalit, Raviv, & Ankonina, 1992; Walsh,
1998, 2003; Wikler, Wasow, & Hatfield,
1983; Wilgosh, Scorgie & Fleming, 2000).
FAMILIES AND DISABILITIES
A number of models, such as family
stress theory, family resilience theory, and
Rolland’s model of chronic illness and dis-
abilities, have been put forward to under-
stand the mechanisms that play into fam-
ily adaptation to major illness and disabil-
ity (Patterson, 1988; Rolland, 1994; Walsh,
1998). The process of adaptation to an ill-
ness or disability is influenced by medical
factors such as severity of the condition,
specific illness-related limitations (i.e., cog-
nitive, perceptual, motor impairment, or
socially stigmatizing physical appearance),
prognosis of illness (i.e., shortened life span
or lethal illness), time phase (acute vs.
chronic illness phase or terminal phase),
and psychosocial illness type (onset, course
of illness, outcome, or incapacitation;
Corbin & Strauss, 1988; Rolland, 1994).
The model has been expanded for genomic
disorders (Rolland & Williams, 2006).
In these models, other key factors for
adaptation are the quality of family pro-
cesses (such as family cohesion, flexibility,
248 RETZLAFF
communication, and expression of affect),
the life cycle phase, transgenerational ex-
periences with illness and disabilities, and
the balance between stressors and re-
sources of the family (Cierpka, Krebeck, &
Retzlaff, 2001; McDaniel, Campbell,
Hepworth, & Lorenz, 2004; Rolland, 1994).
Family belief systems are regarded as
the core factor for family adaptation and
resilience (Patterson, 2002; Rolland, 1994;
Walsh, 1998). Family beliefs are shared
constructs of reality that guide the percep-
tion and behavior around the disability.
They are based on the family’s life experi-
ence and its history. In the process of
adapting to life with a family member’s
disability, belief systems change on differ-
ent levels. Over time, the meanings of
stressors change; family roles, routines,
and the preferred way of family functioning
are adjusted; and new family worldviews
evolve.
A family belief system supposed to have
a strong impact on health and resilience is
family sense of coherence (Antonovsky &
Sourani, 1988). It is defined as a basic mo-
tivational and cognitive attitude that reg-
ulates families’ coping efforts and adapta-
tion to stressful life situations. Competent
families who successfully deal with adverse
life situations are characterized by giving
their life situation positive meanings (Lee
et al., 2004; Patterson, 1991; Walsh, 1998,
2003). A high sense of coherence entails
having the confidence that events are pre-
dictable—that they make sense (compre-
hensibility)— having the conviction that
resources are available or can be made
available to address and meet the chal-
lenges and demands resulting from the sit-
uation (manageability), and having the
confidence that it is worthwhile and mean-
ingful to make the effort to meet the de-
mands so that challenges can be coped with
(meaningfulness; Antonovsky, 1987). This
results in the effective use of family re-
sources, a constructive and flexible activa-
tion of coping strategies that enables posi-
tive adaptation.
Family sense of coherence influences
coping processes by changing the way in
which families perceive stressors in their
life with a disabled child and by the ap-
praisal of available resources. As an opera-
tionalization of the construct, Antonovsky
and Sourani (1988) developed a question-
naire that has been used to some extent in
the research on families with disabilities
and caregivers (Lustig, 1997, 1999; Newby,
1996).
Family belief systems and shared fam-
ily constructs of reality can be inferred by
observing the way in which a family inter-
acts around such challenging tasks as the
demands of a disability (Reiss & Oliveri,
1980). They can also be studied by listening
to family narratives, which more reflect the
subjective perspective of how families
themselves see their world. People orga-
nize their illness experiences in stories
(Frank, 1998; McDaniel, Hepworth, &
Doherty, 1997). The stories that families
tell about their lives reflect their patterns
of coping with health and illness; they are
ways of passing on experiences and helping
to transcend them.
Telling stories about difficulties and
successes, about troubles and challenges
that have been mastered, helps families to
make sense of their life with disability and
to construct their own social reality (Corbin
& Strauss, 1988; Fiese & Wamboldt, 2003;
Hildenbrand, 1990; Penn & Sheinberg,
1991). Families have distinct traditions of
stories (Welter-Enderlin & Hildenbrand,
1996): Some present themselves as being
victims of circumstance in a chaotic, incom-
prehensible world, and others see them-
selves as being in control and focus more on
successes, resources, and positive aspects
of their lives. Families with dysfunctional
coping patterns show problem-saturated
narratives in which life seems to be domi-
nated by restrictions, symptoms, and failed
attempts to find solutions (White & Epston,
1989). Feelings of hopelessness, resigna-
tion, and blame dominate their stories, and
the organizing metaphors of these stories
 FAMILIES OF CHILDREN WITH RETT SYNDROME
deal with tedious, futile effort and struggle.
The focus of attention is narrowed to prob-
lems, and resources, competencies, and
strengths tend to be overlooked (Retzlaff,
2006). Making meaningful stories out of
adverse living conditions gives families
strength to deal with ongoing challenges.
PSYCHOSOCIAL CHALLENGES IN RETT
SYNDROME
Descriptions relying predominantly on
medical terminology barely convey the ex-
tent to which families are challenged. After
a fairly normal period of development, par-
ents have to witness their infant suddenly
lose hand skills, not progress, lose words
she had already learned, and start to with-
draw. The search for a diagnosis and for
therapeutic help can be time consuming
and emotionally challenging. Because Rett
syndrome is usually the result of a sponta-
neous mutation, the diagnosis of a genetic
disorder is totally unexpected. In the mid-
dle phase of adjustment, families have to
deal with extremely distressing behaviors
associated with the disorder: inconsolable
screaming spells, irritability because of
small changes, sleep disturbances, fre-
quent seizures, feeding problems, increas-
ing orthopedic problems, and difficulties in
communicating and getting through to
their daughter. For parents, this means
that they have to rearrange their life to
make space for a child with many cogni-
tive, physical, and communicative impair-
ments. Having a child with Rett syndrome
requires multiple medical and educational
visits that limit parents’ abilities to hold
jobs or advance in their careers.
The study presented here is part of a
broader project the development of a re-
source-oriented preventive treatment pro-
gram for families with children with dis-
abilities that uses family strengths and sto-
ries, regarding families as experts able to
counsel other families (Retzlaff, 2006). It
explores key factors contributing to the re-
silience of families of children with a par-
ticular type of disability, Rett syndrome.
249
The question “What helps families with
disabled children to achieve good adapta-
tion over long periods of time?” is highly
relevant for family therapy and for coun-
seling these families, as well as for the
design of preventive programs.
METHOD
Design
In two parallel quantitative studies on
children with Rett syndrome and on fami-
lies of children with mental retardation
and multiple physical illnesses (Müller,
Hornig, & Retzlaff, 2007; Retzlaff, Hornig,
Müller, Reuner, & Pietz, 2006), the Family
Sense of Coherence (FSOC) questionnaire
was translated from English into German.
It was evaluated with the family assess-
ment measure FAM (Cierpka & Frevert,
1994; Skinner, Steinhauer, & Santa-
Barbara, 1983), a family coping inventory
(Soziale Orientierung von Eltern be-
hinderter Kinder [SOEBEK]; Krause &
Petermann, 1997), a severity of illness
scale, and ratings by the Medizinischer
Dienst der Krankenkassen (MDK, an
agency of health insurance medical ser-
vices), which provided an assessment of
daily care needs.
A discriminant analysis confirmed that
families living with Rett syndrome with
high, medium, and low family coherence
(FSOC) showed different use of resources
and differed in family functioning and cop-
ing styles (Müller et al., 2007; Retzlaff,
2006). To explore these differences from
the perspective of the families, narrative
interviews were conducted with a small
number of families living with Rett syn-
drome.
Participants
The sample consisted of families in
which a child had been diagnosed with Rett
syndrome (299.80 in the fourth edition of
the Diagnostic and Statistical Manual of
Mental Disorders; American Psychiatric
Association, 1994). Members of two re-
250 RETZLAFF
gional branches of the German Rett Syn-
drome Association were approached by
means of a letter asking for their willing-
ness to participate in a questionnaire study
on family resilience and coping and an op-
tional additional interview. Questionnaires
were subsequently mailed to 142 families.
The return rate was 53.53% (n ⫽ 76);
35.9% of the initial sample met the inclu-
sion criteria—a fully completed question-
naire (n ⫽ 51 families). All girls had clas-
sical Rett syndrome. Five girls had been
allocated by medical assessment services
(MDK) the most severe Grade 3 of caregiv-
ing need, meaning that the parents pro-
vided special care for a minimum of 28 hr
per week, that is, feeding and grooming in
addition to “normal” household work; the
family with the youngest girl was in the
process of assessment for moving from
Grade 2 to Grade 3; see Table 1 for descrip-
tive data of the families.
Two groups were formed, representing
the highest and the lowest quartiles in the
Family Sense of Coherence Scale (FSOC
⬎75% versus FSOC ⬍25%), that had agreed
to be interviewed. Families were selected
from the two extreme groups because the
analysis of the quantitative data showed
that families with medium level of family
coherence had intermediate levels of family
functioning and stress and most other vari-
ables. Out of each subgroup with the highest
and the lowest family coherence ratings, three
families were chosen that lived within three
hours driving distance (or 300 km) (pragmatic
criterion). After a telephone call, interviews
were conducted at the family homes.
Procedure
In a probative interview, the feasibility
of a narrative interview according to the
method described by Schütze (1983) was
verified. The interviews were videotaped
and lasted between 105 and 120 min. At
the end of the interview, sociodemographic
data and further medical data were col-
lected, and a medical genogram of the fam-
ily was drawn. The interviews were later
transcribed according to a transcription
guideline.
Data Analysis
Data analysis of the stressors and re-
sources that appeared in the interviews
was carried out through qualitative con-
tent analysis (Mayring, 1983). From the
categorization of the content of the first
interview transcript, a preliminary system
of categories was developed. The first step
of analysis was the categorization of the
resources and stressors. In a circular pro-
cess, categories for stressors and resources
were developed and refined. Different
stressors (24) and resources (43) were
grouped into meta-categories of six stres-
sors and nine resources that were given a
name, for example, “love of the child” and
“delight in the child“ were combined to
form “child-related resources.” The process
of forming categories is in essence already
an interpretation of the text, a necessary
part of qualitative research (Glaser &
Strauss, 1967).
In a further step, narrative types were
constructed. The method of narrative
types, developed by Gerhardt (1986, 1995),
is a modification of the grounded theory
method (Glaser & Strauss, 1967) based on
Max Weber’s (1988) concept of ideal types.
More than the classical procedure of
grounded theory research, this method per-
mits each case to be analyzed as a whole.
Narrative types were formed in a two-step
procedure. The resources and stressors
that are being talked about were not ana-
lyzed as isolated elements but understood
as a narrative gestalt, a pattern that is
either coherent or has contradictions that
are characteristic of the type of narrative.
The narratives of resilience were first re-
constructed for each individual family,
with their content, themes, and leitmotivs.
The individual story themes were then cat-
egorized (e.g., special attention was paid to
the time before observation of a develop-
mental delay, crisis, relationship to profes-
sionals, relationship to the extended fam-
 FAMILIES OF CHILDREN WITH RETT SYNDROME 251

Table 1
Descriptive Data of the Families
Descriptor Girl Mother Father Family
Average age (years) 7.5 38.8 39.7
Siblings
Only child 1
Two children 3
Three children 2
Marital status
Married 4 4
Remarried 2 2
Education
Technical school 3 2
Vocational school 1 1
High school 2 1
University degree 2
Profession
Unskilled laborer 1
Skilled worker 2
Employee 4 1
Government official 1 2
Self-employed 1
Job status
Full time 5
Part time 5 1
Not employed 1
Income
30,000–45,000 € 3
30,000–60,000 € 1
45,000–60,000 € 2

ily, new meaning, metaphors, legends, and
dominant themes). The types were con-
structed from patterns in the data to infer
a narrative gestalt and to find a coherent
story on a higher level of abstraction. The
process of forming types is an abstraction
from the individual story that brings to-
gether patterns in the stories of several
families to a characteristic “typical” whole
(Gerhard, 1986).
The categories of resources and stres-
sors, the metacategories and story types,
were presented to the family systems med-
icine consultation group at Heidelberg Uni-
versity Hospital. On the basis of interview
transcripts, the construction, the discrimi-
natory power, and the plausibility of the
categories were checked in a team dia-
logue. In a circular process, the categories
were changed, refined, and re-presented to
the team. This consensual team validation
served to form a deductive path to docu-
ment that the categories and results were
seen as logically stringent and valid by ex-
ternal observers.
Two types of resilience stories were de-
veloped, with two subtypes for each main
type of story. These were subsequently
given names that reflect their essence in a
condensed way, for example, “story of the
long tedious walk uphill.”
RESULTS
Families spontaneously named stres-
sors that could be grouped into six cate-
gories: emotional difficulties (i.e., inner
quarrelling), health-related stressors
(e.g., seizures or phases of screaming
252 RETZLAFF
spells), uncertainty about illness, open
rejection by social environment, experts
not available or incompetent, and com-
parison with healthy children and fami-
lies. From the perspective of the families,
core resources were tangible resources
(i.e., money and living arrangement that
fits the needs of the handicapped child),
access to illness-related information, per-
sonal resources, expression of affect,
child-related resources, couple relation-
ship, family relationship, support from
the social environment, support from pro-
fessional helpers, and changes in family
worldview.
All families identified social support
and changes in family worldview as key
elements in promoting good family adapta-
tion. However, the analysis of the narra-
tives revealed a distinctive use of these re-
sources. Out of the narratives of the fami-
lies, two major types were constructed.
The first type of story can be called the
“story of the refound balance,” the second
type the “story of the long tedious walk
uphill.” In Type 1, the storyline describes a
good family life that is disturbed by disqui-
eting yet inconclusive medical findings
about the daughter. After a long odyssey
from expert to expert, families take charge.
They reclaim their self-competence and
purposefully insist on not relying too much
on experts from the realization that they
can only give limited answers. They find
friends, relatives, and professional helpers
who provide support.
Frau D. (mother of 4-year-old Anja, di-
agnosed at age 1): “I have to say that
friends helped me a lot, who were just
there and who consoled us.”
When the diagnosis of Rett syndrome
becomes definite, there is an emotional cri-
sis, with a clearly defined closure, that
eventually leads to acceptance and a con-
scious act of saying “yes”—acceptance of
the disability.
Herr D.: “For me, it was a relief to
accept the disability. It is so incredibly
important to accept the disability.”
Frau D.: “I love my child and I do
everything for my child. And then you
manage it, just like that. You just do it.
You don’t even think about it.”
Family history, especially life experi-
ences of suffering and major illness, as well
as personal choices such as job decisions,
are regarded as resources contributing to
better dealing with the family situation.
Herr A. (father of 4-year-old Sandrah,
diagnosed at age 1; her mother had suf-
fered from an accident, and he had
lived and worked with poor people in
developing countries): “And this ques-
tion ‘why this?’ or ‘why us?’ ‘why do we
have to have a girl with Rett syn-
drome?’. . . that question had been an-
swered long ago, because . . . I knew
that life is not easy . . . we have to
make the best of it. Suffering is part of
life.”
Very early in the narratives, parents men-
tion specific charming, lovable aspects of
their daughter and insist that family life
has changed in a positive way and the fam-
ily has developed new meaningful values.
Herr A.: “The way Sandrah can take
delight in things—nobody else can take
delight like that, yes.”
Herr D.: “We experience her so
much as a gift. Her total being—we
love her so much that we do not miss
anything— on the contrary, we are
grateful, that she has what she has.
And we do not think about what she is
missing.”
In the course of adaptation, the life of
the family and the disability are increas-
ingly viewed as absolutely normal. Life
goes on, and even if new challenges are to
be expected, confidence prevails that they
will be mastered:
 FAMILIES OF CHILDREN WITH RETT SYNDROME
Frau A. “We are a normal family— one
child with a disability, the other not.
The child is fine—that is more impor-
tant than the disability.”
Herr D.: “There isn’t anything spe-
cial about what we do. Because . . . we
are by no means doing more than aver-
age, it is not in any way a special
achievement. We are just Mum and
Dad. Mum and Dad love their child—
just because they are Mum and Dad.”
In these stories, the couples have flexi-
ble roles and succeed in balancing and pro-
tecting the marital relationship as well as
their individual interests by organizing
temporary care and spending time together
as a couple and individually.
Mrs. D.: “Yes, because we both stand
together and accept it. So, I find that
especially my husband is particularly
loving and caring with her. And he to-
tally accepts her as she is, how she is,
and the same with me. That really
helps me—I get great support from
him.”
In Subtype 1a of the story of the re-
gained balance, adaptation is much more
simple and rapid: The family immediately
refuses to rely on medical experts. Without
delay, the family takes charge and reorga-
nizes their life. Supported by their love for
their daughter and a strong, happy couple
relationship, their family belief system is
pragmatic: Just do what needs to be done.
Frau E. (mother of 8-year-old Yvonne,
diagnosed at age 6): “First of all she is
simply my child. And second, I think
she just deserves it.”
This attitude reflects a very strong prag-
matic orientation, doing something to meet
the demands of the disability, as opposed to
changing the family belief system on a
more cognitive level.
In the second type of narrative, the
story of the long tedious walk uphill, the
family history includes some occurrence
253
before the birth of the child that will later
on make adaptation to the disability more
difficult.
Frau F. (mother of 16-year-old Irene,
diagnosed at age 5): “So, for me it was a
horrible thought to ever have a child
that is disabled. . . . Before, I was at the
Institute of Human Genetics, to get a
blood test, because I have a sister who
is handicapped. And for me, it was a
horrible idea to have a disabled child.
That was the one thing I did not want
at all.”
The realization that their daughter has
some kind of a disorder is experienced as a
severe shock. The ensuing emotional crisis
is overcome very slowly with no clear turn-
ing point or closure. The search for a diag-
nosis is a time of uncertainty, followed by
further stressors and persistent adverse
experiences.
Herr B. (father of 9-year-old Claire, di-
agnosed at age 2): “It remains an eter-
nal mystery [laughs].”
The extended family does not react in a
positive, supportive way, and the social en-
vironment is openly rejecting. Dealing with
the professional helping system takes up
additional energy. The way the helping
system operates does not seem to make
sense and appears unpredictable:
Frau B.: “Many have withdrawn be-
cause they did not how to deal with it.”
Herr F.: “Yes, we have coworkers,
but no circle of friends in the real
sense.”
From time to time, the ongoing tedious
walk uphill is interrupted by breaks in
which each parent or the couple does some-
thing by themselves, like going out or pur-
suing a recreational activity, but this is a
rather rare occurrence. All too often, it
doesn’t seem to make sense to even try to
get support from agencies:
Frau F.: “Yes, you have to look after
everything just by yourself. You have
254 RETZLAFF
to become an expert yourself. The so-
called experts are not experts, they are
idiots.”
Herr B.: “Yes, it is just always the
problem that . . . that . . . there are no
experts on your side, assisting you . . .
as parents, you are pretty much all by
yourself. This is something that trou-
bles us, something that troubles me
very severely.”
The parents talk more about taking good
care of themselves, but somehow do not
quite manage to make it happen.
Frau B.: “Everything revolves around
the handicapped child, of course this is
so!”
Herr F.: “Life revolves around the
disability.”
They appear as people courageously walk-
ing uphill, expecting more hardships and
future challenges, not knowing if and how
they can be mastered at all. Yet, over time,
they are getting used to their life condition,
and as time goes by, they too start to accept
the situation.
Subtype 2a closely resembles the main
type with the distinction that a very grad-
ual process of changes in family belief sys-
tems is described.
Herr F.: “So it took me at least 5 to 10
years, to come to terms with the dis-
ability of Irene. . . . But somehow, say,
the notion that it is somehow rather
okay, this I only have had in the past
few years.”
Families with Type 1 stories tend to
have high scores on family coherence, low
stress (SOEBEK), good task and role dis-
tribution (FAM), and a strong couple rela-
tionship (SOEBEK–marriage). Good self-
care and use of social support were re-
sources for all six families. Family
relations and the marital relationship were
distinctly weaker in families with Type 2
stories. Among the families with Type 1
stories and high family coherence was the
family whose daughter had the most severe
medical problems, that is, ongoing sei-
zures.
DISCUSSION
The goal of this qualitative study was to
explore parents’ expertise on the process of
adapting to life with a disability such as
Rett syndrome. Although quantitative re-
search permits studying large numbers of
families, this small sample gave families a
voice and adds to our understanding of
family adaptation from an insider’s point of
view. This study was intended to investi-
gate how families, from the inside perspec-
tive, see the relationship between family
resources, family functioning, and adapta-
tion and how families with different levels
of family coherence differ with regard to
these processes. Originally, it was planned
to follow a more individualized method of
data analysis—family case reconstruction
(Hildenbrand, 2004). But with a rare ge-
netic disorder such as Rett syndrome, fam-
ilies could easily have been identified by
medical staff if their family stories had
been part of the analysis. The combination
of the grounded theory method with the
method of formation of narrative types can
be seen as a compromise between an idio-
graphic and a nomothetic procedure allow-
ing the construction of types while preserv-
ing each case’s individuality. Data from
qualitative studies do not aim at the same
validation criteria as quantitative studies.
Qualitative interviews are closer to the ex-
perience of the families, potentially offer-
ing results with more depth and subjective
meaning.
Families with different levels of family
coherence, as measured with the FSOC,
differ distinctively in their resilience nar-
ratives. Although both story types tell
about a crisis, a search for a diagnosis, and
the time after crisis, the emotional crisis
lasts longer in families with a lower sense
of coherence, and there is no clear turning
point. Families with high coherence convey
many incidences of a proactive stance, and
 FAMILIES OF CHILDREN WITH RETT SYNDROME
their intentional reliance on self-compe-
tence contributes to this turning point.
They overcome a position of dependence on
experts and develop a sense of manageabil-
ity. The sense of manageability is further
strengthened by positive experiences with
friends, supportive family relationships, a
strong couple relationship, and available
social and material resources. An active
search for illness-related information is an-
other aspect of a proactive attitude in fam-
ilies with high coherence, adding to the
sense of comprehensibility.
In the family adaptation accounts, there
was an evident temporal ordering: Fami-
lies with Type 1 stories reported changes in
family meanings very early in the inter-
view. From the very beginning, they talked
extensively about their daughter as an en-
richment of family life, depicting her as a
person who contributes and participates in
family life in a reciprocal relationship and
reporting many examples of charming, en-
chanting moments with her. These two
threads were the dominant themes or leit-
motivs of Type 1 stories. An overview of the
two story types is given in Table 2.
The focus on her personhood helps to
defocus stress, deficits, and behavioral
problems and focus on the person she is.
The perception of the girl with Rett syn-
drome as a “thou,” with a given social role
(“She is my daughter”) leads to a seemingly
self-evident caregiving behavior that
matches the sociocultural parenting norms
and to the acceptance of the child’s disabil-
ity (Bogdan & Taylor, 1989).
Acceptance of a difficult life can be re-
garded as an attitude or a psychological
process. It can also be conceived of as the
result of a social process, more easily
achieved when the larger social environ-
ment shows acceptance—“With a little help
from our friends.” “We take her every-
where” reflects not only the family’s open
attitude toward their child, but also im-
plies positive reactions from the social en-
vironment at large. This adds to the fami-
ly’s feeling that life is a friendly place with
255
people who care and that the disability is
manageable.
Families telling Type 2 stories focus
much more on the ongoing stressors and
burdens. They talked much less and much
later in the interview about their daughter
as a resource and changes in family mean-
ings and reported less social support.
Changes in family meanings played a less
important role and were achieved only af-
ter a long period of struggle. However,
these families did have their own way of
being resilient in dealing with the many
demands of the disability. When video sec-
tions of the research interviews were
shown to other families with disabled chil-
dren, they identified more with parents
from this type than with the parents with
more upbeat stories.1
Type 1 stories describe a balance be-
tween attempts to actively master aspects
that can be changed and the acceptance of
conditions that are beyond their control.
Antonovsky and Sourani (1988) assumed
that a good, fulfilling life is not defined by
absence of stress but rather by the way in
which adverse life conditions are taken on.
According to Csikszentmihalyi (1991),
happy moments filled with satisfaction are
not the result of relaxation or freedom from
stress but of challenging situations that
are accepted and pursued with consider-
able effort over an extended period of time
in an earnest yet at the same time com-
posed way.
The best moments usually occur when
a person’s body or mind is stretched to
its limits in a voluntary effort to accom-
plish something difficult and worth-
while. Optimal experience is thus
something we make happen. . . . Such
experiences are not necessarily pleas-
ant at the time they occur. (p. 3)
1
The interviewed families generously gave permis-
sion to use part of their videotaped interviews for
training and education of other families and counsel-
ors.
256
Table 2
Two Story Types in Comparison
Story of the refound balance
(Type 1)
Prologue: “We are doing fine”
First part: Time of crisis
Odyssey from expert to expert
Active search for a path
Distinct time of emotional grief
Second part: Turning point—getting back
into the driver’s seat again
Diagnosis as relief
Acceptance: “The disability suddenly moves
totally into the background.”
Burdens appear bearable: “Everything is
100% fine.”
Professional helpers seen as supportive:
“Grateful to have such a good
therapist.”
Utilization of resources
Resources of the child: “We experience
her so much as a gift.”
Reciprocal relationship
Individual resources: “That’s why I take
out time to drive my motorbike.”
Couple relationship: “I believe that it has
welded us together.”
Social support: “My friends have been
very supportive.”
Image of the family: “We fight and we get
what we are fighting for.”
Balanced family life
Development as a person “with a big
heart for people with disabilities.”
Change in family belief systems
“Life has its challenges”; active spiritual
life
Third part: Life goes on—“We are back to
our normal daily routines.”
Epilogue: looking ahead
Subtype 1a: “She is just my child.”
Families of children with disabilities have
many challenging opportunities to feel
stretched in this way.
Couples therapists have long claimed
that this is also true for successful marital
relationships. Couples relationships are re-
garded as more fulfilling in the long run if
RETZLAFF
Story of the long tedious walk uphill
(Type 2)
Prologue: “Things should have run
differently.”
First part: Time of crisis
Odyssey from expert to expert
Rejection by neighbors and the
community
Despair and grief
Second part: The challenges never seem to
stop.
Diagnosis: “There isn’t much that can be
done.”
Ongoing stress: “And that day after day”
Professional helpers do not offer reliable
support: “You are pretty much on your
own.”
Utilization of resources
Resources of the child: “Boy, can she
laugh”
Individual resources: “Things aren’t what
they used to be.”
Couple relationship: “It is like being a
single mother.”
Social support: “Many friends have
withdrawn.”
Image of the family: “We really are a very
average family.”
Focus of the family on the child:
“Everything revolves around our disabled
child.”
Change in family belief systems
“You have to accept it.”
Third part: Life has to go on—“You must go
on, and you do go on.”
Epilogue: anticipation of future problems
Subtype 2a: “It took us years.”
both spouses share and pursue common
goals and, making a mutual effort, create
good moments between the two of them
(Jellouschek, 1998). When couples succeed
in accepting their child’s disability as a
shared challenge, their relationship can be-
come stronger and more mutually satisfy-
 FAMILIES OF CHILDREN WITH RETT SYNDROME
ing. A prerequisite is that the relationship
is regarded as a non-zero-sum game in
which both partners are enriched by giving
instead of trying to maximize their returns.
Another core resource in the interviews
was changed family worldviews. The fami-
lies’ narratives reported many examples of
how they had realized that disabilities,
pain, and suffering are part of the human
condition. The parents talked of their
strengthened capability to take things as
they come and to draw pleasure and de-
light from the little things in life. They
mentioned the deep acceptance of their
daughter and the realization that life con-
sists of more than an orientation toward
achievement. Instead of getting caught up
in ruminations or hubris by asking in vain
the question “why?” these families showed
acceptance, seeing freedom as surrender to
the inevitable. Similar insights can be
found in many ancient spiritual and ethics
systems. In modern times, Victor Frankl
(1963) pointed out that even in the most
extreme conditions, man has the freedom
to transcend fate by making choices, by
keeping the inner freedom to determine the
meaning that one attributes to a given sit-
uation, and by having a vision worth look-
ing forward to.
Constructivist models of systemic ther-
apy assume that narratives are primarily
made up of ideas and cognitive constructs
of reality (Anderson & Goolishian, 1988).
In consequence, the worldview of a family
with a disabled child that is reflected in the
narratives about their life would be noth-
ing more than a form of fiction, thus risking
denigration of suffering that might be part
of families’ experience. In the face of the
many daily challenges of people with dis-
abilities, the reduction of human systems
and problems to language problems ap-
pears naı̈ve and cynical (Hildenbrand,
1990; Welter-Enderlin & Hildenbrand,
1996). Narratives may also be seen to con-
sist of experiences of events, which are also
interpretations of the world, but more
firmly based on observable phenomena like
257
actions, interactions, and affective ex-
changes (Polster, 1987). From this perspec-
tive, narratives resemble travel accounts
more than fictional stories. The interpreta-
tions of reality are not totally arbitrary;
narratives about life with a disability are
more than an invention of the mind
(Hildenbrand, 2004; Segal, 1986): Disabili-
ties, social inequality, and lack of financial
and social resources do have an impact;
however, what a family makes out of given
conditions is part of the freedom of choice
that people have.
Illness stories, like any other stories,
need not only a storyteller but also a lis-
tener. They are told with the tacit intention
of evoking a particular reaction and a par-
ticular relationship to the people listening.
By telling the story about life with a child
with Rett syndrome, families reauthor
their experience; they highlight certain as-
pects of their experiences with illness, ac-
centuate some parts, and defocus others.
The process of storytelling is also in part a
process of social construction of a family
reality. When these stories are listened to
by a meaningful other person, telling ill-
ness stories can have a healing therapeutic
quality. Retelling experiences in a different
affective context leads to changes in the
meaning of the illness stories.
In terms of their content, the two
types of stories differed distinctively: In
Type 2, the basic story line was “Our life
with Rett syndrome is not easy!”; in Type
1, the basic story line was “Our life is
fine!” Knowing that families telling Type
2 narratives have smaller social support
networks, with fewer friends and rela-
tives available as listeners, we can hy-
pothesize that in their day-to-day-life,
their stories of resilience are largely un-
heard, resulting in less validation that
they do cope successfully in many ways. A
social context of friendly listeners, for in-
stance in multifamily therapy discussion
groups (Gonzalez, Steinglass, & Reiss,
1989), who acknowledge the hardship but
also the many small and great moments
258 RETZLAFF
of daily coping, could be a way to support
the development of a new family identity
that in turn would aid in coping with the
daily hassles. All in all, different types of
resilience narratives can be understood
as different ways to organize experience,
different ways of looking at things and to
approach tasks. Families were selected
from the two extremes because the anal-
ysis of the quantitative data showed that
families with medium levels of family co-
herence had intermediate levels of family
functioning and stress and most other
variables. The recruitment of families
with the help of a parents network sys-
tematically led to a selection of parents
who are coping actively. Families who are
not organized in such a group might have
lower levels of education and less access
to illness-related information. This
study’s interview participants possibly
represent a positive selection of families,
with no families telling stories of failure
to cope. With a larger sample of families,
other types of stories could possibly have
emerged in addition to the two types
found in this study. Among the families
selected for interviewing were those with
the lowest FSOC ratings of the sample.
Forty-seven percent of the sample was
not willing to be interviewed, and one
may reasonably assume that among these
nonresponders were some families with
less successful coping patterns. To be
able to study patterns of low levels of
coherence, one would have to involve a
representative sample of families.
Results are specific to families of girls
with Rett syndrome, living in a distinct
sociocultural context in two-parent fami-
lies. The analysis does not permit infer-
ences about a causal relationship between
ways of coping, family coherence, and type
of narratives. Yet, it presents a theory with
medium-range explanatory power, and one
may expect to find similar types of stories
in any similar sample of families living
with Rett syndrome.
Data from qualitative studies do not
aim at the same validation criteria as
quantitative studies. However, qualitative
interviews have the advantage of reflecting
more closely the experience of the families,
potentially offering results with more
depth and meaning.
Although few quantitative studies on
family coherence in families with disabled
members have been carried out, the rela-
tionship of narratives and family coherence
has also not been intensively investigated
in qualitative research. The results of
Hintermair’s (2002) study on the individ-
ual sense of coherence in families of hear-
ing-disabled children with a semistruc-
tured interview point in a direction similar
to the results of this study: There were
distinctive differences in family coping in
families with high and low sense of coher-
ence. Parents with high coherence man-
aged to cope with the diagnosis more rap-
idly; their subjective level of stress was
lower and their general satisfaction with
life higher (Hintermair, 2002). They expe-
rienced life with the disabled child as a
challenge, were more flexible in using re-
sources, and needed less time to return to a
balanced normal life, and they reported
taking good care of themselves. Overview
articles on quantitative research on fami-
lies with disabled members show that suc-
cessful families have high cohesion, good
social support, a strong marital relation-
ship, a solution focus and reframe the
child’s role (Beavers, 1989; Li-Tsang, Yau &
Yuen, 2001; Wilgosh, Scorgie, & Fleming,
2000; Yau & Li-Tsang, 1999).
CONCLUSION
Narrative analysis of illness-related sto-
ries is a useful way to study the adaptation
process leading to family resilience and
coherence from a perspective that is
closely linked to the daily life of families.
Antonovsky’s and Sourani’s (1988) con-
struct of family sense of coherence is re-
flected in the types of resilience-related
narratives of families living with Rett
 FAMILIES OF CHILDREN WITH RETT SYNDROME
syndrome. From the families’ points of
view, ways to support adaptation include
providing information about the disabil-
ity and access to professional experts, as
well as strengthening family processes,
the marital relationship, and communica-
tion with the child with Rett syndrome. To
deal with the many medical, emotional,
economic, and educational challenges en-
countered by families who live with Rett
syndrome, a collaborative approach of pe-
diatricians, neuropediatricians, orthope-
dists, physiotherapists, special communi-
cation teachers, family therapists, and
family members and friends is needed.
Families may benefit from competent
counselors who, especially at the time of
diagnosis, provide cognitive and affective
“maps” of the disability and empower and
enable the family. Family counseling can
strengthen the competence to relate and
communicate with their daughter in a
sensitive way. Families need tangible
support, including financial aid that
eases problems, temporary caregivers to
relieve parents, and contact with parent
self-help groups. Resilience is more than
an attitude—it results out of the experi-
ence that life with a disability is manage-
able and can be fulfilling and rich, despite
its burdens.
Narrative techniques are a standard
tool for family therapists, but families in-
dicate that they are more interested in in-
terventions that strengthen their social
networks and provide them with people
with whom to exchange their ideas, expe-
riences, and worries rather than with clas-
sical family therapy interventions. The
process of telling the narrative of life with
Rett syndrome in a supportive environ-
ment with listeners who validate the strug-
gles as well as the successes strengthens
the family’s beliefs that they are, indeed,
resilient. Telling stories of resilience to
other families, in settings such as a par-
ents’ groups or multifamily groups, may be
another promising way to promote the de-
velopment of family resilience.
259
REFERENCES
Anderson, H., & Goolishian, H. (1988). Human
systems as linguistic systems: Evolving ideas
about the implications for theory and prac-
tice. Family Process, 27, 371–393.
Antonovsky, A. (1987). Unravelling the mystery
of health. San Francisco: Jossey-Bass.
Antonovsky, A., & Sourani, T. (1988). Family
sense of coherence and family adaptation.
Journal of Marriage and the Family, 50, 79 –
92.
Beavers, J. (1989). Physical and cognitive hand-
icaps. In L. Combrinck-Graham (Ed.), Chil-
dren in family contexts. Perspectives on
treatment (p. 213–212). New York: Guilford
Press.
Beavers, J., Hampson, R. B., Hulgus, Y. F., &
Beavers, W. R. (1986). Coping in families
with a retarded child. Family Process, 25,
365–378.
Beresford, B. A. (1994). Resources and strate-
gies: How parents cope with the care of a
disabled child. Journal of Child Psychology
and Psychiatry, 35, 171–209.
Bogdan, R., & Taylor, S. J. (1989). Relationships
with severely disabled people: The social con-
struction of humanness. Social Problems, 36,
135–148.
Cierpka, M., & Frevert, G. (1994). Die Familien-
bögen: Ein Inventar zur Einschätzung von
Familienfunktionen [Family Assessment
measure–A questionnaire for the assessment
of family functions]. Göttingen, Germany:
Hogrefe.
Cierpka, M., Krebeck, S., & Retzlaff, R. (2001).
Arzt, Patient und Familie [Doctor, patient,
family]. Stuttgart, Germany: Klett-Cotta.
Corbin, J. M., & Strauss, A. L. (1988). Unending
work and care. San Francisco: Jossey-Bass.
Csikszentmihalyi, M. (1991). Flow: The psychol-
ogy of optimal experience. New York: Harper.
Dyson, L. L. (1991). Families of young children
with handicaps: Parental stress and family
functioning. American Journal of Mental Re-
tardation, 95, 623– 629.
Dyson, L. L. (1993). Response to the presence of
a child with disabilities: Parental stress and
family functioning over time. American Jour-
nal on Mental Retardation, 98, 207–218.
Fiese, B. H., & Wamboldt, S. (2003). Coherent
accounts of coping with a chronic illness:
Convergences and differences in family mea-
surement using narrative analysis. Family
Process, 42, 439 – 451.
Flynt, S. W., Wood, T. A., & Scott, R. S. (1992).
Social support of mothers of children with
mental retardation. Mental Retardation, 30,
232–236.
260 RETZLAFF
Frank, A. (1998). Just listening: Narrative and
deep illness. Families, Systems & Health, 16,
197–212.
Frankl, V. E. (1963). Man’s search for meaning.
Boston: Beacon Press.
Frey, K. S., Greenberg, M. T., & Ferwell, R. R.
(1989). Stress and coping among parents of
handicapped children: A multidimensional
approach. American Journal on Mental Re-
tardation, 94, 240 –249.
Gerhardt, U. (1986). Patientenkarrieren: Eine
medizinsoziologische Studie [Careers as pa-
tients–A study in medical sociology]. Frank-
furt, Germany: Suhrkamp.
Gerhardt, U. (1995). Typenbildung. In U. Flick,
E. v. Kardoff, H. Keupp, L.v. Rosentiel, & S.
Wolff (Eds.), Handbuch qualitative Sozialfor-
schung [Handbook of qualitative social re-
search methods] (2nd ed., pp. 435– 439).
Weinheim, Germany: Beltz.
Glaser, B. G., & Strauss, A. L. (1967). The dis-
covery of grounded theory. Strategies for
qualitative research. London: Wiedenfeld &
Nicholson.
Gonzalez, S., Steinglass, P., & Reiss, D. (1989).
Putting illness in its place: Discussion groups
for families with chronic medical illnesses.
Family Process, 28, 69 – 88.
Hagberg, B. (Ed.). (1993). Rett Syndrome–
Clinical and biological aspects. Cambridge:
Mac Keith.
Hagberg, B., Hanefeld, F., Percy, A., & Skjeldal,
O. (2002). An update on clinically applicable
diagnostic criteria in Rett syndrome. Euro-
pean Journal of Paediatric Neurology, 6,
293–297.
Hildenbrand, B. (1990). Geschichtenerzählen
als Proze␤ der Wirklichkeitskonstruktion
[Story-telling as a process of constructing so-
cial realities]. System Familie, 3, 227–236.
Hildenbrand, B. (2004). Fallrekonstruktive
Familienforschung und Familientherapie:
Die Sequenzanalyse in der Genogrammar-
beit [Family research as case reconstruction
and family therapy: The sequential analyses
of genograms]. Familiendynamik, 29, 45–
289.
Hintermair, M. (2002). Kohärenzgefühl und
Behinderungsverarbeitung: Eine empirische
Studie zum Belastungs- und Bewältigungser-
leben von Eltern hörgeschädigter Kinder
[Sense of coherence and coping with handi-
caps: An empirical study on the experience of
stress and coping in parents of children with
hearing disabilities]. Heidelberg, Germany:
Median-Verlag.
Hunter, K. (1999). The Rett syndrome hand-
book. Baltimore: International Rett Syn-
drome Association.
Jellouschek, H. (1998). Wie Partnerschaft
gelingt- Spielregeln der Liebe [How couples
relationship succeed: Rules of love].
Freiburg, Germany: Herder.
Kazak, A. E., & Marvin, R. (1984). Difference,
difficulties and adaptation: Stress and social
networks in families with a handicapped
child. Family Relations, 33, 67–77.
Kazak, A. E., & Wilcox, B. (1984). The structure
and functioning of social support networks in
families with handicapped children. Journal
of Community Psychology, 12, 645– 661.
Krause, M. P., & Petermann, F. (1997). Soziale
Orientierung von Eltern behinderter Kinder
(SOEBEK) [Social orientation of parents of
disabled children]. Göttingen, Germany:
Hogrefe.
Krauss Wyngaarden, M. (1993). Child-related
and parenting stress: Similarities and differ-
ences between mothers and fathers of chil-
dren with disabilities. American Journal on
Mental Retardation, 97, 393– 404.
Lee, I., Lee, E.-O., Kim, H. S., Park, Y. S., Song,
M., & Park, Y. H. (2004). Concept develop-
ment of family resilience: A study of Korean
families with a chronically ill child. Journal
of Clinical Nursing, 13, 636 – 645.
Lindberg, B. (2006). Understanding Rett syn-
drome. Cambridge, MA: Hogrefe & Huber.
Li-Tsang, C. W. P., Yau, M. K.-S., & Yuen, H. K.
(2001). Success in parenting children with
developmental disabilities: Some character-
istics, attitudes and adaptive coping skills.
British Journal of Developmental Disabili-
ties, 47, 61–71.
Lustig, D. C. (1997). Families with an adult
with mental retardation: Empirical family
typologies. Rehabilitation Counselling Bulle-
tin, 41, 138 –151.
Lustig, D. C. (1999). Families with an adult
with mental retardation: Predictors of family
adjustment. Journal of Applied Rehabilita-
tion Counselling, 30, 11–18.
Margalit, M., Raviv, A., & Ankonina, D. B.
(1992). Coping and coherence among parent
with disabled children. Journal of Clinical
Psychology, 21, 202–209.
Mayring, P. (1983). Qualitative Inhaltsanalyse (2.
Auflage) [Qualitative content analyses]. Wein-
heim, Germany: Deutscher Studienverlag.
McDaniel, S. H., Campbell, T. L., Hepworth, J.,
& Lorenz, A. (2004). Family-oriented pri-
mary care. New York: Springer.
McDaniel, H., Hepworth, J., & Doherty, W.
(1997). The shared emotional themes of ill-
ness. In S. H. McDaniel, J. Hepworth, & W.
 FAMILIES OF CHILDREN WITH RETT SYNDROME
Doherty (Eds.), The shared experience of ill-
ness: Stories of patients, families, and their
therapists (pp. 1–9). New York: Basic Books.
Müller, B., Hornig, S., & Retzlaff, R. (2007).
Kohärenz und Ressourcen in Familien von
Kindern mit Rett-Syndrom [Coherence and
resilience in families of children with Rett
Syndrome]. Frühförderung Interdiziplinär,
26, 3–14.
Newby, N. (1996). Reliability and validity test-
ing of the family sense of coherence scale.
Unpublished doctoral dissertation, Saint
Louis University, St. Louis, MO.
Patterson, J. M. (1988). Families experiencing
stress: I. The family adjustment and adapta-
tion response model II. Applying the FAAR
model to health-related issues for interven-
tion and research. Families, Systems &
Health, 6, 202–237.
Patterson, J. M. (1991). Family resilience to the
challenge of a child⬘s disability. Pediatric An-
nals, 20, 491– 499.
Patterson, J. M. (2002). Understanding family
resilience. Journal of Clinical Psychology,
58, 233–246.
Patterson, J. M., & Garwick, A. W. (1994). Lev-
els of meaning in family stress theory. Fam-
ily Process, 33, 287–304.
Penn, P., & Sheinberg, M. (1991). Stories and
conversations. Journal of Strategic and Sys-
temic Therapy, 70, 30 –37.
Polster, E. (1987). Every person’s life is worth a
novel. New York: Norton.
Reiss, D., & Oliveri, M. E. (1980). Family para-
digm and family coping: A proposal for link-
ing the family’s intrinsic adaptive capacities
to its responses to stress. Family Relations,
29, 431– 444.
Retzlaff, R. (2006). Resilienz und Kohärenz in
Familien von Kindern mit Behinderungen.
Eine quantitativ und qualitativ orientierte
Studie [Resilience and coherence in families
of children with disabilities. A quantitative
and qualitative study]. Unpublished doctoral
thesis, Heidelberg University Medical
School, Heidelberg, Germany.
Retzlaff, R., Hornig, S., Müller, B., Reuner, G.,
& Pietz, J. (2006). Kohärenz und Resilienz
bei Familien von Kindern mit geistiger und
körperlicher Behinderung [Coherence and
resilience in families of children with mental
and physical disability]. Praxis der Kinderpsy-
chologie und Kinderpsychiatrie 55, 36 –52.
Roach, M. A., Orsmond, G. I., & Barrat, M. S.
(1999). Mothers and fathers of children with
Down syndrome: Parental stress and in-
volvement in childcare. American Journal of
Mental Rehabilitation, 104, 422– 436.
261
Rolland, J., & Williams, J. (2006). Toward a
psychosocial model for the new era of genet-
ics. In S. Miller, S. McDaniel, J. Rolland, & S.
Feetham (Eds.), Individuals, families, and
the new era of genetics (pp. 36 –79). New
York: Norton.
Rolland, J. S. (1994). Families, illness and dis-
ability—An integrative treatment model.
New York: Basic Books.
Sarimski, K. (2001). Kinder und Jugendliche
mit geistiger Behinderung [Children and ad-
olescents with mental handicaps]. Göttingen,
Germany: Hogrefe.
Schütze, F. (1983). Biografieforschung und nar-
ratives Interview [Biological interview and
narrative research]. Neue Praxis, 13, 283–293.
Segal, L. (1986). The dream of reality. New
York: Norton.
Skinner, H. A., Steinhauer, P. D., & Santa-
Barbara. J. (1983). The family assessment
measure. Canadian Journal of Community
Mental Health, 2, 91–105.
Tunali, B., & Power, T. G. (1993). Creating sat-
isfaction: A psychological perspective on
stress and coping in families of handicapped
children. Journal of Child Psychology and
Psychiatry, 34, 945–957.
Walsh, F. (1998). Strengthening family resil-
ience (1st ed.). New York: Guilford Press.
Walsh, F. (2003). Family resilience: A frame-
work for clinical practice. Family Process, 42,
1–18.
Weber, M. (1988). Die Objektivität sozialwis-
senschaftlicher und sozialpolitischer
Erkenntnis (1904) [The objectiveness of so-
cial research and sociopolitical knowledge].
In J. Winkelmann (Ed.), Max Weber- Gesam-
melte Aufsätze zur Wissenschaftslehre (pp.
146 –214). Tübingen, Germany: Mohr.
Welter-Enderlin, R., & Hildenbrand, B. (1996).
Systemische Therapie als Begegnung [Sys-
temic therapy as encounter]. Stuttgart, Ger-
many: Klett-Cotta.
White, M., & Epston, D. (1989). Narrative
means to therapeutic ends. Adelaide, South
Australia, Australia: Dulwich Center.
Wikler, L., Wasow, M., & Hatfield, E. (1983).
Seeking strengths in families of developmen-
tally disabled children. Social Work, 28, 313–
315.
Wilgosh, L., Scorgie, K., & Fleming, D. (2000).
Effective life management in parents of chil-
dren with disabilities: A survey replication
and extension. Developmental Disabilities
Bulletin, 28, 1–14.
Yau, K. M., & Li-Tsang, C. W. P. (1999). Adjust-
ment and adaptation in parents of children
with developmental disability in two-parent
262 RETZLAFF

families: A review of the characteristics and Association. (1994). Diagnostic and statisti-
attributes. British Journal of Developmental cal manual of mental disorders (4th ed.).
Disabilities, 45, 38 –51. American Psychiatric Washington, DC: Author.

Appendix Links

RETT SYNDROME • Online Mendelian Inheritance in

• The GeneReviews of Rett Syn-
drome: http://www.genetests.org/servlet/
access?db⫽geneclinics&site⫽gt&id⫽
8888890&key⫽ Gksthvvs3YUxw&grv⫽
&fcn⫽v&fw⫽9bmX&filename⫽/profiles/
rett/index.html
• National Institute of Neurological
Disorders and Stroke: http://www.ninds
.nih.gov/disorders/rett/detailrett.htm
Man (OMIM): http://www.ncbi.nlm.nih
.gov/entrez/dispomim.cgi?id⫽312750
FAMILY SUPPORT LINKS
• http://www.rsrf.org/aboutrett
syndrome/index.html
• http://www.rsrf.org/parentresources/
9.3.html