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A long journey: Biological and non-biological parents’ experiences raising children with FASD

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Background Research evaluating the experiences of birth and adoptive parents raising children with a fetal alcohol spectrum disorder (FASD) is needed to ascertain facilitating factors and barriers to successful family functioning. Qualitative approaches to parents' experiences can help us better understand in what ways families need support and can also be used to guide quantitative research in this area. Objectives The present study is a qualitative, descriptive investigation of parents' experiences raising children with FASD in an Alberta city and environs. Methods Eleven participants, consisting of biological (3), adoptive (7), and foster (1) parents were interviewed using an unstructured format in order to enable them to share their "as-is" experience. A phenomenological-hermeneutic approach and thematic analysis was used to analyze and organize the data into themes. Results Nine central themes were derived from the interviews: 1) something's not right; 2) receiving a diagnosis; 3) attitudes toward birth parents; 4) living in a war zone; 5) understanding my child; 6) getting support; 7) re-defining success; 8) lifelong parenting; and 9) my child's gifts. Sub-themes were derived from several of these central themes. Descriptions of central and sub-themes are provided as data from each are presented. Conclusions By better understanding parents' experiences, family members, teachers, professionals, support personnel, and the community can better support parents of children with FASD. This support is needed in order to promote stable environments for families raising children with FASD, which has been identified as a critical protective factor to promote lifelong successes for those living with the disorder. © 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
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J Popul Ther Clin Pharmacol Vol 17 (2) Summer 2010:e308-e322; August 20, 2010
© 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
e308
A LONG JOURNEY: BIOLOGICAL AND NON-BIOLOGICAL PARENTS’
EXPERIENCES RAISING CHILDREN WITH FASD
James L Sanders, George Buck
University of Alberta Department of Educational Psychology,
Edmonton, Alberta, Canada
ABSTRACT
Background
Research evaluating the experiences of birth and adoptive parents raising children with a fetal alcohol
spectrum disorder (FASD) is needed to ascertain facilitating factors and barriers to successful family
functioning. Qualitative approaches to parents’ experiences can help us better understand in what ways
families need support and can also be used to guide quantitative research in this area.
Objectives
The present study is a qualitative, descriptive investigation of parents’ experiences raising children with
FASD in an Alberta city and environs.
Methods
Eleven participants, consisting of biological (3), adoptive (7), and foster (1) parents were interviewed
using an unstructured format in order to enable them to share their “as-is” experience. A
phenomenological-hermeneutic approach and thematic analysis was used to analyze and organize the data
into themes.
Results
Nine central themes were derived from the interviews: 1) something’s not right; 2) receiving a diagnosis;
3) attitudes toward birth parents; 4) living in a war zone; 5) understanding my child; 6) getting support; 7)
re-defining success; 8) lifelong parenting; and 9) my child’s gifts. Sub-themes were derived from several
of these central themes. Descriptions of central and sub-themes are provided as data from each are
presented.
Conclusions
By better understanding parents’ experiences, family members, teachers, professionals, support personnel,
and the community can better support parents of children with FASD. This support is needed in order to
promote stable environments for families raising children with FASD, which has been identified as a
critical protective factor to promote lifelong successes for those living with the disorder.
Key Words: Fetal Alcohol Spectrum Disorders (FASD), parenting, qualitative research
clinical description of the deleterious
effects of fetal alcohol ingestion was first
published by Lemoine et al, in 1968.
1
Five years later, Jones et al., a research team in
Seattle, WA, provided a similar clinical
description which they named fetal alcohol
syndrome.
2,3
The classification of fetal alcohol
spectrum disorders (FASD) is now used as an
umbrella term identifying deficits related to all
degrees of prenatal alcohol exposure. Children
with FASD can experience a number of
neurocognitive difficulties
4
including deficits in
intellectual ability
5
, executive functioning
6
,
attention
7
, memory
8
, and social cognition.
9
Persons with FASD can have mild to serious
cognitive challenges
10
, which can lead to
secondary disabilities such as mental illness,
addiction
11
, disrupted school experience,
A
A long journey: biological and non-biological parents’ experiences raising children with FASD
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© 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
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inappropriate sexual behaviour, and trouble with
the law.
12
Children with FASD who are diagnosed
early and raised in stable home environments,
however, have been shown to be more apt to
avoid these devastating secondary disabilities.
12
It
is therefore not surprising that Canadian Federal
and Provincial governments consider addressing
FASD to be an important priority.
13
Children’s cognitive deficits, behavioural
difficulties, and secondary disabilities can create
considerable challenge for parents raising children
with FASD.
14
Research comparing the
experiences of birth and adoptive parents raising
children with FASD is needed to ascertain
facilitating factors and barriers to successful
family functioning.
15
Frankel, Frankel, & Opie
15
interviewed
parents who were perceived as successful in
parenting children with FASD. In their study, the
researchers described a plethora of challenges in
caring for children with FASD, such as children’s
behavioural, cognitive, affective, physical,
developmental, and social functioning. In
addition, the researchers described several barriers
to successfully accessing supports from
educational and health care systems, and other
external sources of stress such as racism and loss
of culture among aboriginal children in non-
aboriginal homes.
Brown & Bednar
16
evaluated parents’
challenges raising children with FASD, and
organized participants’ responses into eight
concepts. Parents expressed difficulty preventing
the child’s behaviour problems before they occur;
making time for themselves; keeping plans for
themselves and their families; collaborating with
the school to maintain consistency for their child;
keeping the FASD child involved in community
activities; lacking support from professionals;
keeping their child involved with peers; and
coping with learning and behaviour problems.
Challenges of parents raising children with FASD
are varied, and multiple factors may accumulate to
increase overall parenting challenge and stress.
Higher levels of stress may be experienced in
families where children with prenatal alcohol
exposure are raised. Paley et al.
17
evaluated
predictors of stress in 100 children with FASD
and their parents. In this study, the researchers
compared children’s cognitive, executive,
adaptive, and behavioural functioning with child
and parent domain stress, accounting for
demographic, diagnostic, and resource variables.
Paley et al. found that delays in executive
functioning, impaired adaptive functioning,
behavior problems, and adoptive parent status
were related to higher child domain stress. Parent
domain stress was associated with biological
parent status and fewer family resources.
Because a stable family environment is key
to helping children with FASD attain positive
outcomes
12
, additional supports for parents are
needed. Supports needed by families raising
children with FASD described by Brown
18
,
include abroad support network of family and
friends; helpful and compassionate professionals
who have a good knowledge of prenatal alcohol
effects; available community resources; good
working relationship with the child’s school;
including staff with knowledge of FASD;
appropriate strategies to promote learning; income
support to assist with expenses such as medical
costs and respite; and strengths-based approaches
to parenting taking into account the individual
child’s unique abilities and challenges.
A few comparable qualitative studies using an
unstructured interview approach were retrieved
from the literature. Granitsas
19
conducted
interviews with four adoptive parents living in
Massachusetts, USA, who were currently caring
for children or adolescents with FASD in their
homes. Using a phenomenological-hermeneutic
approach for data analysis, six essential themes
emerged from the interviews: Feeling Delight
Upon Adoption; Not Knowing, where parents
explained that they were given no information, or
incomplete information about their child’s
diagnosis; Identifying Problems, Concerns, and
Difficulties common to FAS; Feeling Frustrated
given difficulties raising a child with FAS;
Feeling Pride in children’s accomplishments
despite medical, learning, and behavioural
challenges; and Feeling Devoted despite
incomplete knowledge, frustration, and coping
with difficulties. Granitsas, who adopted four
children with FAS, then compared and validated
the participants’ experiences with her own.
Recommendations for nurse practitioners serving
parents of children with FAS include reviewing
maternal alcohol consumption for prevention of
FAS, serving as resources for parents, being
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empathic advocates, and assisting with individual
educational plans and parent advocacy.
Gardner
20
described experiences of eight
married, middle-class foster parents of children
with FAS living in the United States, also using an
unstructured interview format. Using content
analysis, Gardner described three topic areas:
Cognitive concerns, Behavioural management,
and Coping with daily realities. Gardner
recommended that nurses help parents create
realistic expectations for their children, and to
assist parents in recognizing that misbehaviour is
best thought of resulting from brain dysfunction
rather than maliciousness.
Salmon
21
interviewed eight birth mothers
from New Zealand from a feminist paradigm. The
themes derived from these interviews emphasized
prejudices and oppressions experienced by these
mothers, consistent with the feminist approach,
with less emphasis on parenting children. This
study correctly recognizes the burdens and
injustices that many biological mothers
experience and emphasizes support for families
and educating communities on the adverse effects
of prenatal alcohol exposure.
These researchers have provided a starting
point to better understanding the experiences of
parents of children with FASD. Research studies
of these types have not been uncovered from a
Canadian context. Because of the small sample
sizes and geographical restrictions inherent in
qualitative research, further research of this nature
is needed better understand parents’ experiences.
In this study, parents’ subjective experiences are
emphasized, resulting in extensive quotes from
participants, with the intent that their stories (as
they would share them) are conveyed.
METHOD
Design
To explore biological and non-biological parents’
experiences raising children with FASD, a
phenomenological-hermeneutic approach was
utilized.
22
Rehorick & Taylor
23
articulated the
need to understand human experience “as-is”
which, in terms of parenting, may include
parenting expectations and stresses, as well as
coping with children’s behavioural and cognitive
challenges. The “as-is” experiences of parents are
not restricted to positivistic, observable incidences
and experiences. Rather, un-observable cognitive
processes permeate human experience.
24
In order
to prevent leading participants to share particular
experiences and to enable the sharing of “as-is”
experience, an unstructured interview format was
followed.
Participants
Parents were eligible to participate in the study if
they presently, or had previously, raised a child
with FASD in their home, and could speak
English. In total, eleven participants, consisting of
biological (3), adoptive (7), and foster (1) parents
were recruited through community agencies and
word of mouth in an urban Alberta city and
environs. Three adoptive parents and one
biological parent cared for children who now live
out-of-home. Only about half of the parents (6)
were in a marital relationship at the time of the
interview. Participants’ spouses were not actively
recruited to avoid “parenting team” dynamics in
order to allow participants’ subjective experiences
to be shared more freely. All participants were
Caucasian except for Lorraine who was Native
American. Age range of the participants was 32-
59 years, with a mean age of 45.8.
Table 1 contains demographic information on
the parents, including age, marital, and parental
status, and the ages of their children with FASD.
Identifying information of participants has been
removed, and the names of parents and children
appearing herein are pseudonyms.
A long journey: biological and non-biological parents’ experiences raising children with FASD
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© 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
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TABLE 1 Participant Demographics
Participant
(pseudonym)
Age Marital
status
Parental status FASD child(ren) (pseudonyms)
Allison 52 Separated Adoptive Andrew (age 16)
Bob 59 Married Foster Becky (age 14), Beth (age 12),
Brianne (age 11)
Christine 33 Married Adoptive/Step-parent Chad (age 6)
Deidre 32 Divorced Biological Dylan (age 15)
Ellen 50 Divorced Adoptive Elizabeth (age 21)
Frances 57 Divorced Adoptive Fraser (age 18)
Gloria 47 Married Adoptive Gavin (age 12)
Jane 46 Married Adoptive Jeremy (age 18)
Karen 33 Single Adoptive Kevin (age 5)
Lorraine 56 Married Biological Larry (age 20)
Mark 39 Married Biological Mary (age 11),
Makayla (age 10)
Data Collection
Participants in this study were recruited through
an FASD newsletter received by approximately
1,300 Albertans, through community agencies,
and through personal contacts. Once a participant
demonstrated interest in the study, the researcher
arranged an appointment at a private location of
the participants’ choosing. An explanation of the
study was provided, and informed consent was
obtained. The participant was instructed that the
interview would be audio recorded, and that the
interviewer was not looking for specific themes,
but sought to hear parents’ experiences from their
perspectives. Participants were asked to share
thoughts and experience important to them. At the
conclusion of the interview, the interviewer asked
the parents to sum up their experiences “in a
phrase or two.” These interviews were then
transcribed verbatim for analysis.
Data Analysis
The researcher examined the interview
transcriptions for emerging themes.
22
QSR Nvivo
qualitative data analysis software was used to
help identify, categorize and compare the themes.
As themes emerged they were organized into
central themes and sub-themes. Quotes were
identified that seemed best to describe these
themes. To assist with the identification and
coding process, some themes were named after a
quote provided by a participant. In this way,
interpretation and organization of themes
remained close to the data, and allowed the data to
“speak for itself”.
25
To improve trustworthiness of
the data analysis, themes were shared with three
of the participants to determine if interpretations
were congruent with their perspectives. These
three parents expressed that they felt the themes
were accurate.
Findings and Discussion
Nine central themes were derived from the
interviews: 1) something’s not right; 2) receiving
a diagnosis; 3) attitudes toward birth parents; 4)
living in a war zone; 5) understanding my child;
6) getting support; 7) re-defining success; 8)
lifelong parenting; and 9) my child’s gifts. Sub-
themes were derived from several of these central
themes.
A long journey: biological and non-biological parents’ experiences raising children with FASD
J Popul Ther Clin Pharmacol Vol 17 (2) Summer 2010: e308-e322; August 20, 2010
© 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
e312
1) “Something’s not right”
Except for Karen, all non-biological parents in
this study had taken their children into their
homes prior to a diagnosis of an FASD. Some of
these parents were unaware that their child’s birth
mother consumed alcohol during pregnancy.
Other parents, while aware that alcohol was
consumed during pregnancy, were uninformed of
the potential impact on their child’s cognitive,
learning, and behavioural functioning. Allison
recounted she found out Andrew’s birth mother used
substances after she already signed the adoption
papers:
After we signed the adoption papers, the
social worker says ‘by the way, we
found out that his mom used to drink
and do drugs’, and that was it. That is all
she mentioned. I didn’t have a clue what
FASD was.
Parents’ journeys to obtaining a FASD diagnosis
began as they perceived that “something was not
right” with their children. Frances described how
Fraser seemed “out of character” when he was seven
years-old:
Well that's when things started falling
apart when he was 7...he just became
very aggressive and he became quite
delusional...he became extremely
impulsive...he also made this suicidal
gesture that he had a tensor bandage
and he kind of wrapped it around his
neck and it wouldn't have worked but at
7 years old I don't think he necessarily
knew that. So he was in a lot of distress
and he was aggressive it was totally out
of character and that's when we really
knew there was something wrong...It
was really stressful because we really
didn't know what was happening. We
had no real explanation of any kind. It
just didn't seem to make sense.
1a) Seeking answers
Several parents started seeking answers as they
perceived that “something was not right with their
children. For some of these parents, investigating the
possibility of prenatal alcohol exposure was a self-
directed exploration. Jane read material on FASD
provided by her employer and explained that, “it
was like reading our story in a lot of ways.” Gloria
suspected that FASD may have been a factor in
Gavin’s life and initiated the process of diagnosis:
We started to have some extreme
behaviours after he moved in. In my
mind, I thought ‘is this fetal alcohol?’
Because he was exposed prenatal to
alcohol and all kinds of drugs. We had
that documentation so I started to think
maybe this is what it is, so I got him in
the [hospital] to get the diagnosis.”
1b) “Not on the radar
Some parents encountered barriers as they were
seeking answers to their children’s apparent
deficits. Several participants indicated that
prenatal alcohol exposure was “not on (the
doctor’s) radar screen”, and that aberrations in
behaviour and development were dismissed as
“nothing to worry about.” Frances expressed
frustration with the lack of awareness of FASD
exhibited by some mental health professionals:
Nobody seemed to be cognizant of fetal
alcohol...It's really frustrating for parents
because for the most part you're dealing
with mental health professionals who
are absolutely clueless about fetal
alcohol. It's not on their radar screen.
2) Receiving a diagnosis
Receiving a diagnosis of FASD seemed like a
double-edged sword for many parents in this
study. Birth mothers experienced grief and guilt
for drinking during pregnancy. In addition,
biological and non-biological parents expressed
regret for “mishandling situations before they
were aware that their children were impacted by
prenatal alcohol exposure. However, obtaining a
diagnosis provided relief and validation as parents
came to understand their children’s challenges.
Finally, several parents explained that an FASD
diagnosis was not the only identified concern, and
that they were faced with a “double whammy”;
having to cope with multiple disabilities.
2a) Grief and guilt
Ellen explained that she felt “incredible guilt” for
assuming her daughter was purposefully
misbehaving. Deidre described the terrible guilt
she felt when she learned that Dylan’s deficits
were the result of drinking during pregnancy:
A long journey: biological and non-biological parents’ experiences raising children with FASD
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© 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
e313
I had a lot of guilt for many years...very
much depressed, knowing that my
drinking caused this damage. Like I
said, that just threw me over the edge. I
cried a lot. I felt bad that I did this
damage to Dylan. I thought what kind of
a parent am I to do that to my own kid.
Jane experienced a grieving process as her hopes
and dreams for Jeremy were spoiled:
There was a prolonged grieving stage
because you have all these hopes and
expectations for your child that they're
going to grow up and be successful and
have relationships, and you can
certainly never expect that at 15 you're
going to be moving your child out of
your home, and you're going to be
dealing with the justice system and
professionals and ultimately having your
18 year-old son go to jail, having to talk
to street people in order to find out
where he is. All of those things were not
hopes and dreams you have when you
have a small baby.
2b) Relief and validation
Although parents experienced feelings of regret
and grief, receiving a diagnosis also provided
relief and validation as they came to understand
the source of their children’s challenges better.
Ellen felt “a great comfort” when she received the
diagnosis. Allison said that receiving a diagnosis
provided insight regarding what to expect of
Andrew:
At first I figured we were doing
something wrong because he is not
listening. Then after he was diagnosed
and we went to the [hospital] and they
said he also has oppositional defiant
disorder, then we kind of realized where
he was coming from. And then the more
we learned about his diagnosis and the
impact of what to expect and what not to
expect, then it was easier to a certain
degree...At least we knew what we were
in for!
2c) “Double whammy”
Several parents explained that their children had
other disabilities and disorders in addition to
FASD. As noted in the quote above, Andrew was
diagnosed with Oppositional Defiant Disorder in
addition to FASD. Elizabeth was previously
diagnosed with Generalized Anxiety Disorder,
and Fraser also experienced significant concerns
with anxiety. Chad was diagnosed with ADHD
prior to FASD, and also experienced separation
anxiety. Kevin was not responding to family
members and was diagnosed with Reactive
Attachment Disorder. Becky was given an
additional diagnosis of ADHD, and Beth
demonstrated obsessive/compulsive tendencies.
Gavin has Cerebral Palsy and Post-Traumatic
Stress Disorder in addition to FASD, and Larry
was diagnosed with Klinefelter’s Disorder. These
factors, in relation with FASD, create complex
profiles for these children.
3) Attitudes toward birth parents
Several non-biological parents, and a biological
father, shared their feelings and perceptions
toward their children’s birth mothers. Although
this topic was not anticipated at the
commencement of the study, it does provide
important insight into the feelings and perceptions
of adoptive/foster parents of children with FASD.
Some parents expressed anger toward their child’s
birth mother for “ruining” their child’s life. They
were frustrated that some mothers drink alcohol
during multiple pregnancies with impunity. Other
parents withheld judgment and acknowledge
probable challenges in the birth mother’s life that
may have contributed to her drinking. They
suggest that FASD is a greater social issue than a
woman’s individual choice to drink, and suggest
that these birth mothers do not set out to
intentionally harm their children.
4) “Living in a war zone”
Many children with FASD demonstrate severe
behavioural challenges, including tantrums,
aggression, and destructiveness.
10
In this theme,
parents describe their experiences living and
coping with their children’s tantrums, aggression,
and destructive behaviour. For several families,
coping with these significant challenges have
impacted family members’ mental health and
relationships, and are described in the sub-theme
4a) “Collateral Damage”. In addition, chaos in
the home is further fuelled in some cases when
parents are “not on the same page”, which is
described in the sub-theme 4b) “Two Generals,
A long journey: biological and non-biological parents’ experiences raising children with FASD
J Popul Ther Clin Pharmacol Vol 17 (2) Summer 2010: e308-e322; August 20, 2010
© 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
e314
One Army” Jane explained that living with
Jeremy was “like living in a war zone.” She
further noted that, “Anything could trigger him,
and he would go on a rampage, and he would
break things, and if anybody got in his way even
the slightest little bit he became violent.” Gloria
shared an experience where seven year-old Gavin
tantrummed for 11 hours:
My husband and I took turns restraining
him. So you go have supper and I’ll hold
him down, and then you, that’s how we
did it. This time it was 11 hours, and it
was 11 at night and we were so
tired…My husband had to put Plexiglas
up over the window because we were
afraid he was going to smash the
window. We hear this huge crash, so we
go up, and he’d managed to get the
Plexiglas out of the window, and he’d
broken it into 100 little pieces.
Challenges in learning and memory associated
with FASD may impact contingency learning.
26
For this reason, behavioural strategies, such as
natural and logical consequences, are often
ineffective in modifying behaviour. Karen explained
how implementing natural consequences did nothing
to reduce Kevin’s hitting:
He’s had so much behaviour
management and work put into him…I
don’t even think it’s to the point that he’s
gotten better. I think we’ve learned to
not set him off…He’d hit constantly.
Before I had any formal training in FAS I
would try natural consequences. So he
would hit me and I would put him in
timeout on a chair. And I even taught
Kevin, you hit you sit. That was the rule.
I trained him to sit down after he finished
hitting. So it’s all he did, I just trained
him. So he would hit and he would go sit
down in the chair, but the consequence
didn’t stop the hitting.
4a) Collateral Damage
“Living in a war zone” can create a chaotic home
environment where “it’s very hard to make a
family seem like a family” (Frances). In the theme
Collateral Damage, parents describe the impacts
of this environment on family members’ feelings,
mental health, and relationships. Bob shared that
fostering children with FASD has impacted his
“social life significantly.” Jane explains that her
daughter was diagnosed with Post-Traumatic
Stress Disorder as a result of Jeremy’s violence in
the home. Frances noted that her experience
raising Fraser has tainted her perspective toward
people affected by prenatal alcohol exposure: “I
can't even say I can learn how to get along with a
fetal alcohol kid because sometimes when he gets
really aggressive, it's really hard to accept the
behaviour. It's influenced my attitude.”
4b) Two Generals, One Army
This theme describes the turmoil that can result
when two parents raising their child with FASD
are not “on the same page.” At times, one of the
parents seemed to have difficulty accepting their
child’s limitations which, according to some
participants, created additional strain on the
marital relationship. Jane indicated that her
husband, Jeremy’s step-father, is not “used to
living with somebody with FAS, and it's very
chaotic.” Allison, who has been separated from
her husband for 10 years, described the impact
these challenges had on her marriage, which
eventually contributed to their breakup:
We worked together when we adopted
Andrew, and once all his behaviours
started we couldn’t take it anymore. So
[my ex-husband] said either Andrew
goes or he goes. So I had a tough
choice to make. I couldn’t get rid of him
because he was already disposed of
once. I couldn’t do that again.
5) “Understanding my child”
Parents reported that their abilities to care for their
children improved as they learned about the
behavioural, cognitive, and developmental
impacts of prenatal alcohol exposure. However,
learning about FASD was only one step toward
more successful parenting. Because of the
spectrum of deficits associated with FASD, the
impacts of prenatal alcohol exposure are unique to
each child, and deficits associated with the
disorder will not manifest in all cases. In addition,
parents related that even when well-versed in
knowledge of FASD, appropriate strategies were
difficult to implement when coping with parenting
stresses and “losing patience” (Gloria). Bob
A long journey: biological and non-biological parents’ experiences raising children with FASD
J Popul Ther Clin Pharmacol Vol 17 (2) Summer 2010: e308-e322; August 20, 2010
© 2010 Canadian Society of Pharmacology and Therapeutics. All rights reserved.
e315
explained that “real learning” about FASD
children doesn’t come in a book, but in hands-on
experience: “You can read about fetal alcohol.
You see the images and you can understand that
they’re affected physiologically and intellectually
and, whatever. But your real learning is about how
you deal with these children.”
Six sub-themes were identified as part of
parents’ learning about their children: 5a) here
today, gone tomorrow; 5b) an invisible disability;
5c) trouble maintaining school/employment; 5d)
taken advantage of; 5e) in the wrong crowd; and
5f) creating a bubble.
5a) “Here Today, Gone Tomorrow”
Ellen described Elizabeth’s tendency to forget
simple tasks, such as putting on socks, as “here
today, gone tomorrow.” This theme describes
parents’ perceptions of the learning and memory
challenges their children experience. Several of
these children often require frequent cueing,
reminding, and re-learning of even simple tasks.
Parents shared their frustrations with their
children’s memory and learning, how they came
to understand these challenges in relation to
FASD, and how it has altered the way they parent
their children. Christine was baffled by her son’s
apparent inability to learn:
It’s a really hard thing to get your head
around when you realize that he really
doesn’t understand. You’re telling him
this and he really doesn’t get it. But he
understood it yesterday…He got it. Then
today it’s like you’ve never told him at all
because he doesn’t remember. That’s
really hard to understand how come,
well you knew yesterday, why don’t you
know today?
Coping with such memory and learning
challenges can be wearisome even when the
parent knows that their child is experiencing a
memory or learning deficit. Christine explained
that, “it’s frustrating because you get mad telling
your kid the same thing a million and one times
but you know he doesn’t remember.” Although
well-versed in understanding the deficits
associated with FASD, Gloria sometimes loses
her patience with Gavin’s inability to complete
simple tasks:
Just understanding for the umpteenth
time. Sometimes I am telling him things
7 times! Pick your shoes up! He’ll go to
pick his shoes up, but then see
something else. And I say pick your
shoes up. And then the phone will ring
and he’ll get it. It’s like I’m going to
scream! I’m really going to lose it. So it’s
hard even for me sometimes to keep my
patience.
5b) “An invisible disability
Many people with FASD do not demonstrate the
growth deficiencies and facial dysmorphology
associated with FAS, yet can still demonstrate
significant learning and behavioural challenges.
27
In some cases, people with FASD demonstrate
average or above average IQ.
28
The invisibility of
disability in these cases of FASD can lead to
unrealistic assumptions and expectations about
their social, learning, and behavioural functioning.
Ellen explains that people expect too much of
Elizabeth, partly because she is not visibly
disabled:
I think in many ways she would have
had an easier life if she looked more
disabled…So her biggest issue is that
people expect too much of her, because
she looks like she (understood) and
should be able to do it. That’s what gets
her in trouble. She does a lot of
masking. She tries really hard to make it
look like she knows what’s going on,
and half the time she doesn’t.”
In contrast, Gloria feels that Gavin, who also has
cerebral palsy, will be advantaged throughout his
life because he looks disabled, “I think in that way
people will look after him a little bit more, he’ll
be a little more protected than someone with
FASD that has an IQ of 100, who looks like he
doesn’t have a disability.”
5c) Trouble maintaining school/employment
Research indicates that people with FASD are at-
risk of school drop-out and tend to have difficulty
maintaining employment.
12
Such struggles were
demonstrated in this study as parents described
their children’s challenges with maintaining
school attendance and finding and maintaining
employment. Jane related that Jeremy was kicked
out of multiple school districts and several
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parents, such as Deidre, had to deal with multiple
suspensions and sought out specialized school
programs to meet their children’s educational
needs.
Of the 4 adult children in this study, only
Elizabeth graduated high school. Although she
spent some time unemployed and receiving
provincial funding from AISH (Assured Income
for the Severely Handicapped), Elizabeth has
successfully maintained employment:
She also had approval for assured
income, and she used assured income
until the last year. She really needed it.
She wasn’t working any kind of regular
shifts, she wouldn’t accept any
employment help as in going with an
agency. So she’d get these jobs, one of
them was a cashier, and there is no
way. She can’t count money. Not at the
speed that you need to do it as a
cashier. Within a week or two that job
was over. I’m sure one of the
supervisors was just frustrated, like why
can’t you get it? She can’t do it. So
some unrealistic jobs…Now she’s
working for a hotel, she’s the
housekeeper. It’s the same job pretty
well everyday, you clean the hotel
rooms, and you need to do it to this
standard, and they check the standards
intermittently so you never know which
rooms they will check. And that’s the
best way for Elizabeth, is to know
exactly what it should look like when it is
done, so she is good at the job and is
well paid.
Gloria described her perception of what 12 year-
old Gavin needs to be successful in employment:
He can’t pack groceries. What is light,
and what’s heavy? That’s a judgment
call. He can put things in a bag but you
know that watermelon is going to go on
top of the eggs every time. Well the
eggs are heavy! (Laughs). No, they’re
fragile. He couldn’t do janitorial
work…He could do like assembly line
work, same thing same way every time,
no judgment. There is something out
there for him. There will be. Maybe it will
be paid employment or maybe it won’t.
5d) Taken advantage of
Related to challenges creating and maintaining
friendships, children with FASD in this study
were often “taken advantage of” by peers. Some
parents explained that their children had no “true”
friends, while other children became connected
with negative peer relationships. Jane described
how Jeremy created friendships, “He started to
steal money and buy friends. He would buy
cigarettes for his friends and that's how he made
friends.” Gloria described Gavin’s social
immaturity at school:
He loves people, but he’s so naïve. We
won’t let him take valuable things to
school, but he really wanted to take a
basketball to school, and then it got
‘lost’, and then he got a book that was
stolen. I think the other kids know that
he is, you know. But he just loves
everybody in his class. So as a boy he
was being bullied, and the strategy is
just to stay away from [the bully]. So if
he’s in line, you just wait for someone
else to line up, don’t stand beside him in
line. And if he comes behind you leave
the line and go to the back of the line.
We tried to teach him these things, well
this boy talked to him one day and was
nice to him. Well he’s my friend. Now
he’s the nice boy.
Gloria further described that, in social
relationships, Gavin “has no insight.” Allison
explained that Andrew is a “follower.” Frances
said that Fraser is associated with a fairly
negative peer group because they're the ones that
accept him.” Lorraine noted that 20 year-old Larry
is “so easily led astray” by negative influences.
Because several children in this study were prone
to negative social relationships, many ended up
getting in the wrong crowd.
5e) In the wrong crowd
People with FASD are at much greater risk of
getting into trouble with the law.
12
Parents of adult
children with FASD in the present study were
concerned about potential for criminal and gang
involvement. Jane shares her story of rescuing
Jeremy from “gang hits”, where he was at-risk of
being killed:
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e317
He's been involved in gangs, we know
that. But because he doesn't understand
things the way other people do, they will
give him drugs to sell, and he'll sell the
drugs and then spend the money
himself. So we've had several instances
where there have been gang hits on
him, so it's either we pay the debt and
free him up, or we risk having him
killed…I've been able to, through the
police, make some contacts with some
of the higher profile older gang
members who maybe aren't necessarily
involved in criminal activities anymore,
but are still considered to be part of the
gang, and suggest to them that Jeremy
isn't a good risk. He has a history of
basically stealing from the gang, so they
might want to not consider him, and as
far as I can tell that's having some
effect…We had to get really creative to
figure out how we were going to stop
this cycle from happening because he
just doesn't understand…and if we kept
rescuing him there's no deterrent, and
yet if we don't rescue him it likely will
mean death, so I had to figure
something out. I can't control him so I
have to control the environment.
5f) Creating a Bubble
By “controlling” Jeremy’s environment, Jane was
able to help prevent her son being seriously hurt
or killed. Because of their children’s risk of social
problems and learning deficits, many parents
needed to find ways to control their children’s
environments to keep them from harm.
In response to the death threats placed on her
son, Jane has “infiltrated his life” to try to prevent
his involvement with gangs. To prevent Dylan
from “going down the wrong path”, Deidre has
“sheltered” him for most of his life. Frances tried
to put “controls” on Fraser’s life such as
restricting activity with inappropriate friends. Jane
described that controlling Jeremy’s environment
was necessary for promoting success, “I can't
control what he does. I just have to figure out how
to control the environment as much as possible to
allow him the most success.”
6) Getting Support
Parents reported barriers and successes in getting
help from support networks, medical and mental
health professionals, schools, government
agencies, and community organizations. Frances
felt that involvement with the medical system was
detrimental to Fraser’s mental health at present:
Looking back, I really think that it would
have been better if I had not gone
through the mental health system…after
two years of Risperdal he put on a ton of
weight and he was very sedated It had a
lot of negative effects and it really didn't
do anything positive for him. At best, the
anti-psychotics helped him with his
agitation, but it went way beyond
agitation to the point where he was
actually sedated. I can't get him back (to
the doctor) now because of this
experience and he says that he found it
damaging going through the mental
health system, because he always felt
he had something wrong with him so he
just saw that as a negative. Now he
won't take medications. He won't go see
a psychiatrist even though he has
significant depressive symptoms. He's
had psychotic breaks. But he has zero
confidence in the mental health. So and
he probably would benefit from some
medications even if it's just
antidepressants, anti-anxiety medications.
He just won't go and I think it's because of
his experience with the mental health
system.
Ellen recognized that many children with FASD
are not adequately accommodated in school. She
described that successful school supports for
Elizabeth may be in part due to Ellen’s work in
the disabilities field and her efforts in advocating
for Elizabeth:
She had great support through school,
terrific support. Maybe that’s [the school
board], maybe it’s what people thought I
might know or who I might know in this
kind of work, but she got terrific support.
I felt kind of guilty because sometimes
you see kids and they are struggling and
they’re not getting that support. Her
siblings never got it either because
nobody fought for them. I felt guilty that
Elizabeth got more than anyone else,
but I can’t do anything about their kids.
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FASD specific strategies provided by personal
and professional supports were beneficial for parents
raising their children. Some strategies shared by
these parents include warnings for upcoming
transitions (i.e. leaving the store), repeating
instructions, structure and routine, using visuals to
outline routines and instructions, and recognizing
sensory issues such as sensitivity to light or clothing.
In addition, parents emphasized that in using these
strategies, remaining patient is paramount because,
as Christine observed, “I’m going to have to tell
(him) twenty-five times. It’s normal.”
Some parents felt unsupported as they indicated
they felt blamed for their children’s behavioural
challenges attributable to FASD. Christine
elaborates on how many people “don’t understand”
what it is like raising a child with FASD:
It’s a really hard thing to deal with
people because they don’t understand.
Until you’ve actually had to raise a kid
(with FASD) or look after a kid that has
it, they don’t get it and they can tell you
they do but they don’t get it. They had
parenting groups at my daughter’s
school and they have all these solutions
and life fixes. “Well try this because this
works really well” and you just get to the
point you’re like, whatever. They hand
you all these life fixes and all this
information and it’s like okay, you don’t
get it. It’s not going to work. They say
“Well you just didn’t try hard enough.”
No it’s not going to work, okay? He’s not
going to do it because it doesn’t work
like that. Then it’s usually, “well you
didn’t try hard enough” or “if you
would’ve done this with him”, and “well
he gets away with too many things.”
Well it’s not that he gets away with it, he
doesn’t know better. He doesn’t
understand. You can’t make him get
what he isn’t going to get. People have
a hard time with that…Parents look at
you like you’re a freak because you’re
really strict with him. They look at you
like you’re a mean ass and its like, no,
you don’t get it. If I tell him nicely in
twenty words, he’s lost.
7) Re-defining success
Several parents described a transformation in their
expectations of their children as they have come
to learn about the cognitive, learning, and
behavioural challenges associated with FASD.
Re-defining success involves setting more
realistic expectations for their children in light of
their deficits. Bob explained the need to accept his
children’s limitations:
You always want them to be better than
they are but you have to realize all the
love and nurturing in the world is not
going to get them from point A to point
B. You have to come to terms with their
limitations. Build them up where you can
and leave the rest alone. Don’t keep
fighting it.
8) The lifelong parent
The lifelong parent represents parents’
perceptions of lifelong challenges associated with
their children’s disabilities. It is suggested by
them that their children will be dependent on
some sort of support throughout their lives, and
that their role as caregiver does not end when their
children turn 18 years old. Interestingly, Jane’s 18
year-old son Jeremy and Lorraine’s 20 year-old
son Larry telephoned their mothers during the
interviews because they were in need of
assistance. Lorraine explained the “lifetime
commitment” of raising a child with FASD:
There's no saying you're 18 now they
can go, or they can be home and you
don't have to worry about them. You
always have to worry about them, and
it's hard because you never know what
they're going to do. They could end up
with a gang, they could get hurt easily
drinking and being in a crowd. They're
so easily led astray…Yeah, it's a lifetime
of worrying about them.
9) Gifts
Although participants primarily emphasized their
challenges raising children with FASD, many
parents also discussed their children’s gifts. Mary
and Becky are gifted artistically. Jeremy is “an
amazing musician, a gifted athlete, a loyal friend.”
Gavin is “warm and friendly. He always tries his
best, and he wants to make others happy.”
Makayla is “a little ham.” Andrew can be “a real
kind and sweet person”, and Dylan is
“compassionate and forgiving.” Karen explained
that although the effects of prenatal alcohol
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exposure have negatively impacted Kevin’s
behaviour, having FAS is part of “who he is”:
I don’t know how to explain it without
sounding really horrible. In a way, Kevin
wouldn’t be who he is without his FAS.
And I guess that part of that is his
impulsivity…I think in a way that his
traits in FAS make him who he is, and I
love who he is. I don’t want to say I’m
glad he’s affected or that I wouldn’t want
him not to be affected, but I like the
spunk, and I like everything about him.
It’s not that I love that my son has FAS,
but all the personality traits and
everything that comes along with it is
such a blessing, a gift for him.
DISCUSSION
The themes derived from the interviews are
largely in line with research on parenting children
with FASD. In feeling that “something’s not
right” with their children, parents in this study
related similar feelings to those parents
interviewed by Granitsas
19
, who explained that
they had been given incomplete information, if
any, about their children’s diagnoses. In addition,
Frankel, Frankel, & Opie
15
also found that the
adoptive parents in their study were not fully
informed of the possible consequences of prenatal
alcohol exposure, despite the knowledge or
suspicion that their children were exposed to
alcohol prenatally. Informing adoptive/foster
parents of the possibility or likelihood of prenatal
alcohol exposure does little to empower them if
information on the effects of FASD, appropriate
strategies, and access to additional supports are
not provided as well. Like participants in other
studies, parents were challenged by not knowing
where to seek out information about FASD. In
addition, parents expressed frustration as they
dealt with educational and health professionals
who lacked knowledge of the effects of prenatal
alcohol. Nevin et al.
29
surveyed 75 physicians in
Toronto, Ontario, half of whom had very little
confidence in their ability to diagnose FAS, and
none of whom were aware of the accepted
screening method for alcohol use in pregnancy. In
many areas that seem to experience higher
prevalence of FASD, such as rural areas of
Northern Canada, clinicians have few professional
resources available to them.
30
It seems that there
are few practitioners in health, education, social
services, and justice systems that have a working
knowledge of the effects of FASD.
18
In addition,
many parents feel that their knowledge of FASD
is not regarded or utilized by professionals.
16
Receiving a diagnosis of FASD early in a
child’s life may be a crucial step to preventing
future social problems. It was apparent in this
study that receiving a diagnosis elicited strong
emotional reactions from parents, including grief
over dashed hopes for their children, guilt over
alcohol consumption or prior parenting practices,
relief for the explanation and normalization of
their children’s challenges, and validation that
children’s troubles were not caused by bad
parenting. Physicians shared in interviews that an
appropriate FASD diagnosis can provide relief
and explanation to parents living with the
disorder
31
. Although there is research regarding
the importance of obtaining a diagnosis for
families who have children with other
developmental disabilities
32
, little research was
found focusing on the experiences of parents
receiving their children’s diagnoses of an FASD.
One exception is Ryan & Ferguson’s
33
qualitative
study of 5 families of children with FAS, where
parents expressed, “If I knew then what I know
now” (pg. 372), their parenting strategies and
expectations of their children would have been
different. Reactions to a diagnosis of FASD may
differ from developmental disabilities because the
deficits of FASD are different, and blame can be
allocated to birth mothers. Because a diagnosis
has the potential to alleviate family tensions,
research evaluating parents’ experiences receiving
diagnoses of FASD for their children is needed.
“The FAS label has the power to both
apportion blame and erase it”.
31
Although attitudes
toward birth mothers were not anticipated at the
commencement of the study, it does provide
important insight into the feelings and perceptions of
adoptive/foster parents of children with FASD. Like
parents in this study, participants in Gardner’s
20
study of foster parents expressed feelings of anger
and frustration toward birth mothers for drinking
during pregnancy. The result of such intense
feelings may negatively impact family
functioning.
34
Practitioners consulting with
adoptive and foster parents of children with FASD
should be aware that parents may hold harsh
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feelings toward birth parents. Helping parents
cope with anger and resentment may be an
important step in promoting healthy family
functioning.
Violence, antisocial behaviour, and conduct-
related disorders can be associated with prenatal
alcohol exposure.
35
Living with an FASD child
with externalizing behaviour problems, such as
hyperactivity, aggression, and destructiveness, can
be stressful and discouraging for parents. Coping
with these externalizing problems can be
demanding on parents and interfere with self-
care
16
, which can then spiral into further stress.
17
Parents need to be encouraged to adopt self-care
practices, and be empowered to do so through
community support and respite services.
Children with FASD can experience significant
cognitive, memory, and executive difficulties
10
that
can impact their school, home, and social
functioning. Because of problems with short-term
memory, organization, learning, retention,
regulation, and social awareness, these cognitive
concerns may permeate most or all of the secondary
challenges of FASD described by Streissguth et al.
12
Coping with learning and memory challenges was
frustrating and disheartening for parents in this
study, and many felt guilty for assuming that their
children were “forgetting purposefully or
maliciously.
Caregivers assumptions of what their children
should know and remember may be confounded by
the invisibility of FASD in many cases. Chudley et
al.
13
suggested that the facial dysmorphology
associated with FAS is relatively unimportant when
compared with the central nervous system
dysfunction caused by prenatal alcohol. In fact,
absence of facial dysmorphology, compared to the
presence of facial dysmorphology, has been shown
to be associated with gaps in services and more
unfavourable life outcomes.
12
Like the participants in this study, parents in
Gardner
20
expressed that they were worried about
their children because they were “nve” and would
be taken advantage of”. As children grow into
adolescence, their social lives become increasingly
complex, and the gap in social ability widens
between adolescents with FASD and their peers.
36
This seems to relate to parents’ responses in this
study, in that their children were “so easily
manipulated” and had no social “insight”. Their lags
in social development, perhaps in conjunction with
other cognitive abilities and mental health concerns,
may put adolescents and adults with FASD at
greater risk of gang involvement, as was noted in
this study as well.
Children with FASD need to be “protect(ed)
from the hazardous straits into which they are
born”.
12
Because of their cognitive disabilities,
patients with FASD can be vulnerable to being
manipulated by others. Parents in this study
encountered the same need to protect their children
from untoward peer associations and from being
“taken advantage of”. In “Creating a bubble” of
protection, parents seemed to be cognizant of their
children’s “hazardous straits”, and intervened in the
hopes of promoting success for them. For Jane,
“Creating a bubble”, worked to save Jeremy’s life
without him knowing.
Parents in this study seemed to internalize the
importance of creating realistic expectations for
their children. Changing expectations may be an
important coping strategy for parents
20
, and may be
a characteristic of successful families.
15
The
importance of “under-reacting” is emphasized
when children with FASD misbehave because
behaviour that seems malicious may be due to
learning, memory, or processing deficits.
Information about realistic expectations should be
frankly shared with parents, and more research
about parental expectations is needed.
The consequences of prenatal alcohol exposure
“appear to persist throughout life and to require
lifelong supports”.
33
This can be troubling for
parents, who may become lifelong caregivers to
some extent for their children. Although some of
their children may achieve a degree of independence
(i.e. Elizabeth in this study), others will likely
require support to some degree. Because of the
invisibility of disability and because average IQs for
FASD populations typically exceed cut-offs for
adult support, much of this burden will likely fall on
parents. Fears for not knowing their children’s future
were expressed by parents in other research
19,20
, but
literature examining actual experiences of parents of
adult children with FASD was not located. Because
of the lifelong need for support and advocacy,
further research is needed in this area.
While recognizing the deficits characteristic of
FASD, it is also important to recognize these
children’s strengths, skills, and gifts. Each child is
more than a case of FASD.
26
Parents in Granitsas
19
study explained that they felt pride in their children,
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and recognized their children’s abilities, which for
many was in music. Parents in this study also
recognized their children’s gifts amidst a myriad of
social, cognitive, and behavioural deficits. In
working with families, clinicians and educators
should recognize children’s gifts to create strength-
based intervention programs
18
and to work
empathically with parents.
30
In this light, it seems appropriate to expand
research on this topic to obtain more generalizeable
findings. Individual themes and subthemes arising
from this study can be further explored using larger
samples of participants and quantitative
methodologies. For example, parenting expectations
can be explored using quantitative measures
comparing parents of children with FASD, other
disabilities, and typically developing children. Doing
so can further clarify our understanding of parents’
general experiences, leading to targeted
interventions. Findings from exploratory qualitative
studies on parenting children with FASD to date
have laid the groundwork for further research into
the lives of parents, and obtaining additional
generalizeable findings may lead to positive changes
in the prevention of FASD and how families access
support.
At the conclusion of interviews, parents were
asked to sum up their experience in a phrase or two.
Although the parents expressed significant
challenges, they also experienced personal growth
and unity with their children. Mark expressed
satisfaction for his “journey raising his two
biological children with FASD:
I think I’ve been blessed that I have these
two girls in my life; they are very special in
their own way. I don’t know what I would
do without them if they weren’t in my life. It
was a long journey! But it was worth it…I
could be helping them the rest of their
lives…They probably remember all the
things I helped them on and what I did for
them. I think they will appreciate all things
I did. I give myself a pat on the back!
Certainly, many parents of children with FASD
deserve “a pat on the back”. By providing these
families with the supports they need, family
members, teachers, professionals, support personnel,
and the community can help promote successful
family functioning for families raising children with
FASD, which can help promote lifelong successes
for those living with the disorder.
Corresponding Author:sanders1@ualberta.ca
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... FASD is a lifelong disability that requires external supports in multiple areas of life for optimal outcomes to be achieved (Rasmussen, et al., 2008;Rowbottom, Merali and Pei, 2010). As Michaud and Temple (2013: 96) state, 'The normal progression of life might not be an option' and parenting does not end when children turn 18 years of age (Sanders and Buck, 2010). In addition, the stigmatisation of FASD, together with its often invisible nature, is problematic for everyone involved and has a direct correlation with harmful effects on both individuals and families (Sanders and Buck, 2010;Stade, et al., 2006). ...
... As Michaud and Temple (2013: 96) state, 'The normal progression of life might not be an option' and parenting does not end when children turn 18 years of age (Sanders and Buck, 2010). In addition, the stigmatisation of FASD, together with its often invisible nature, is problematic for everyone involved and has a direct correlation with harmful effects on both individuals and families (Sanders and Buck, 2010;Stade, et al., 2006). ...
... FASD is a multifaceted and pressing issue with implications for individuals, families and society. While high-quality caregiving and home environments are cited as the most important factors for promoting the lifelong success of individuals affected, (Caley, et al., 2009;Sanders and Buck, 2010), most of the current literature focuses on the negative outcomes and the costs and challenges, with very little scrutiny of family experiences. Other than one study that explored the stages of caregiving, parents' support needs, suggestions for required services and inputs at each stage (see Walls and Pei, 2013), specific research on optimal FASD interventions are 'limited and unsystematic' (Mohamed, et al., 2020: 244). ...
Article
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Fetal alcohol spectrum disorder (FASD) is the leading non-genetic cause of developmental disability in Canada. It poses many challenges at the individual, family and societal levels. This study explores adoptive parents' experiences of having a child with FASD in their family and how these experiences impact family well-being and, specifically, parenting, family dynamics, sources of support and coping strategies. Using an Interpretive Phenomenological Analysis (IPA) approach, in-depth semi-structured interviews were conducted with eight adoptive parents of children with FASD. Four main themes emerged, each with several subthemes: (1) managing individuals with FASD; (2) navigating family cohesion; (3) psychological warfare; and (4) experiences of supports. Findings showed how FASD affects all aspects of family life and has a constant and cumulative
... For individuals and their caregivers, previous research found that receiving a diagnosis of FASD can be a positive and empowering process by improving understanding of an individual's daily challenges and increasing confidence to provide and seek appropriate support and services [36][37][38]. However, the experience can also be overwhelming related to the long-term support that will be required and feelings of guilt, shame and blame [39]. Little research has focused on health professionals' perceptions and confidence in communicating a diagnosis of FASD to families, although research in the general medical profession suggests that many practitioners find such interactions stressful and lack training on how best to deliver difficult outcomes [40]. ...
Article
Full-text available
Since the 2016 release of the Australian Guide to the Diagnosis of Fetal Alcohol Spectrum Disorder (FASD), considerable progress has been made in the identification and diagnosis of the disorder. As part of a larger process to review and update the Guide, the aim of this study was to identify review priorities from a broad range of stakeholders involved in the assessment and diagnosis of FASD. Sixty-two stakeholders, including healthcare practitioners, researchers, other specialists, individuals with cultural expertise, lived experience and consumer representatives completed an online survey asking them to describe up to five priorities for the review of the Australian Guide to the Diagnosis of FASD. A total of 267 priorities were described. Content analysis of responses revealed priority areas relating to diagnostic criteria (n = 82, 30.7%), guideline content (n = 91, 34.1%), guideline dissemination (n = 15, 5.6%) and guideline implementation (n = 63, 23.6%). Other considerations included prevention and screening of FASD (n = 16, 6%). Engaging stakeholders in setting priorities will ensure the revised Australian Guide can be as relevant and meaningful as possible for the primary end-users and that it meets the needs of individuals with lived experience who will be most affected by the diagnosis.
... The complex needs associated with FASD present significant challenges for caregivers, and can result in distress, isolation, grief, and loss (Paley et al., 2006;Sanders and Buck, 2010;Kautz et al., 2020;Skorka et al., 2020). Caregivers often report feeling under-supported, misunderstood, and at times, blamed by service providers for the challenges of their family member with FASD (Mukherjee et al., 2013;Coons et al., 2018;Domeij et al., 2018). ...
Article
Full-text available
Fetal alcohol spectrum disorder (FASD) is a multifaceted disability, characterized not only by brain- and body-based challenges, but also high rates of environmental adversity, lifelong difficulties with daily living, and distinct sociocultural considerations. FASD is one of the most common neurodevelopmental disabilities in the Western world and associated with significant social and economic costs. It is important to understand the complexities of FASD and the ways in which FASD requires unique consideration in research, practice, and policy. In this article, we discuss our perspectives on factors that distinguish FASD from other disabilities in terms of complexity, co-occurrence, and magnitude. We provide an overview of select literature related to FASD as a socially rooted disability with intergenerational impacts and multiple layers of stigma. These social issues are intertwined with notable experiences of adversity across the lifespan and high rates of co-occurring health concerns for individuals with FASD, all of which present unique challenges for individuals, caregivers, families, service providers, and policy makers. Understanding these factors is the first step in developing and implementing specialized initiatives in support of positive outcomes for individuals with FASD and their families. Future directions are proposed for advancing research, practice, and policy, and responding to the unique complexities of FASD.
... This can result in a tendency to say and do things without comprehending or anticipating the sometimes very severe consequences of those actions (Rasmussen, 2005), such as firesetting. Memory deficits also affect persons with FASD in being able to properly generalize skills, follow instructions, and limits recall accuracy (Green et al., 2014;Salmon & Buetow, 2012;Sanders & Buck, 2010;Skorka et al., 2020). Poor adaptive skills and behavioral problems result in profound difficulty for persons with FASD to conform with societal standards or socialization (Brown & Bednar, 2004;Green et al., 2014;Skorka et al., 2020). ...
Article
Full-text available
Central nervous system damage resulting from prenatal exposure to alcohol, often referred to as fetal alcohol spectrum disorders (FASD), commonly manifests as lacking cognitive functioning, problem solving, impulsivity, memory, executive functioning, and social skill deficits. For individuals with FASD, these brain-based deficits translate into impulsive behaviors and poorly thought-out decision-making, coupled with an inability to anticipate and recognize the sometimes very severe consequences of their behaviors. Not unexpectedly, individuals with FASD frequently find themselves disproportionately involved in the criminal justice system and mental health services. For some individuals with FASD, these behaviors can also include firesetting. First responders, like other health and legal professionals, are often unable to recognize the behavioral indicators of FASD, primarily due to a lack of training. As a result, firesetting behaviors are often attributed to deliberate, willful acts of delinquency, a desire to damage property, thrill seeking, or as attempts for personal gain, rather than being viewed as maladaptive attempts to solve problems by individuals who lack the tools to do this in more appropriate ways. These same skill deficits also present when individuals with FASD are interviewed about their involvement in such behaviors, sometimes resulting in confabulation, suggestibility, and false confessions. Further education and training in FASD are vital for first responders if they are to better support individuals with FASD and minimize their chances of becoming involved in firesetting behaviors. Furthermore, this training and education will help ensure that first responders can intervene in more appropriately when crisis situations do occur. This article will outline key behavioral symptoms of FASD as well as provide first responders with suggestions as to how to best support individuals when FASD is suspected. The brief quote that follows highlights some of the key challenges facing individuals with FASD and how poor decision-making and impulsiveness can result in severe consequences for the individual and those around them.
... They strive to be included and contribute meaningfully to their communities. Caregivers (ie, biological, foster, adoptive, and relatives) are dedicated to supporting their children with FASD or PAE and undertake numerous protective actions to reduce system barriers and help their own children and families adapt to challenges [10][11][12]. However, responding to FASD remains a very stressful experience, often fraught with difficulties accessing the resources and information needed. ...
Article
Background Fetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental conditions. Significant barriers prevent family access to FASD-informed care. To improve accessibility, a scalable mobile health intervention for caregivers of children with FASD is under development. The app, called Families Moving Forward (FMF) Connect, is derived from the FMF Program, a parenting intervention tailored for FASD. FMF Connect has 5 components: Learning Modules, Family Forum, Library, Notebook, and Dashboard. Objective This study assesses the feasibility of FMF Connect intervention prototypes. This includes examining app usage data and evaluating user experience to guide further refinements. Methods Two rounds of beta-testing were conducted as part of a systematic approach to the development and evaluation of FMF Connect: (1) an iOS prototype was tested with 20 caregivers of children (aged 3-17 years) with FASD and 17 providers for the first round (April-May 2019) and (2) iOS and Android prototypes were tested with 25 caregivers and 1 provider for the second round (November-December 2019). After each 6-week trial, focus groups or individual interviews were completed. Usage analytics and thematic analysis were used to address feasibility objectives. Results Across beta-test trials, 84% (38/45) of caregivers and 94% (17/18) of providers installed the FMF Connect app. Technological issues were tracked in real time with updates to address problems and expand app functionalities. On use days, caregivers averaged 20 minutes using the app; most of the time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. Overall, 67% (30/45) of caregivers posted at least once in the Family Forum. Interviews were completed by 26 caregivers and 16 providers. App evaluations generally did not differ according to usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive- than negative-coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with the caregivers’ stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made on the basis of feedback during the first beta test, which were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, which is useful in improving user experience. Conclusions The results demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. They will guide subsequent app refinement before large-scale randomized testing. This study used a systematic, user-centered design approach for app development and evaluation. The approach used here may illustrate a model that can broadly inform the development of mobile health and digital parenting interventions.
... • Enculturation was positively associated with resilience • Differential patterns of association for components of enculturation and resilience were found between adolescents with and without FASD • For all adolescents, lower levels of resilience were associated with higher lifetime self-reported offending behavior; group differences were again found between specific components of resilience and offending Sanders and Buck (2010) • One theme, my child's gifts, was focused on strengths; specific gifts included artistic, musical, athletic, loyal, perseverant, friendly, desire to make others happy, kind, compassionate, forgiving, and spunky • Eight other themes were identified, largely focused on challenges, frustrations, and deficits associated with the disability: (1) something's not right, (2) receiving a diagnosis, (3) attitudes toward birth parents, (4) living in a war zone, (5) understanding my child, (6) getting support, (7) re-defining success, and (8) lifelong parenting Adults (age 18 years and older) Brenna et al. (2017) • Four themes related to the young man's "resilience and strategic self-awareness": (1) balancing support with independence; ...
Article
For many years, researchers have explored the complex challenges experienced by individuals with fetal alcohol spectrum disorder (FASD). This research has been important for documenting the brain‐ and body‐based impacts of prenatal alcohol exposure as well as the psychosocial vulnerabilities and environmental adversities frequently associated with FASD. It has also helped to support advocacy efforts and highlight the necessity of FASD services and supports. However, with this focus on deficits and needs, there is a considerable gap in the literature on the strengths and successes of individuals with FASD. The lack of strengths‐based FASD research has likely perpetuated the stress and stigma experienced by individuals with FASD and their families, and there is a critical need to shift the direction of the field. The current study was a narrative review of the literature on strengths in FASD. Our goals were to: 1) understand the state of strengths‐based research related to individuals with FASD across the lifespan, and 2) describe positive characteristics, talents, and abilities of individuals with FASD that may be cultivated to promote fulfillment and wellbeing. We identified a total of 19 studies, most of which were conducted to explore the lived experiences of adults with FASD. This preliminary but critical body of evidence highlights the intrinsic strengths of individuals with FASD, including strong self‐awareness, receptiveness to support, capacity for human connection, perseverance through challenges, and hope for the future. Despite the importance of this emerging evidence, appraisal of the literature indicated a need for more intentional, methodologically rigorous, participatory, and theory‐driven research in this area. Findings from this study, including the identified gaps in the literature, can be used to inform research, practice, and policy to meaningfully advance the field of FASD and promote positive outcomes in this population.
Chapter
Fetal alcohol spectrum disorders (FASD) are highly prevalent neurodevelopmental disorders associated with prenatal alcohol exposure (PAE). Research on FASD has generally focused on challenges faced by this population while insight into strengths and quality of life has lagged. We introduce the “From Surviving to Thriving” model, which proposes a paradigm shift toward a strengths-based, holistic intervention approach to support thriving in people with FASD. Based on a focused intervention review, existing interventions for FASD incorporate many elements that are consistent with a strengths-based framework, such as inclusion of environmental accommodations and fortification of natural supports. However, a comprehensive strengths-based framework has yet to be fully realized, tested, or adopted in community settings. Important areas of growth remain and notable systems-level barriers need to be addressed. We propose six directions to advance interventions for FASD toward a more person-centered, strengths-based approach. These involve reduction of stigma, improved measurement of strengths and thriving, utilization of strengths-based frameworks, community knowledge translation, adaptation of existing, effective models for FASD, and increased efforts to reach underserved populations.
Chapter
This book addresses different challenges that endanger the lives of children in South Africa from an ethical perspective. The text is meant to position itself as a resource for specialists (and practitioners) in ethics and childhood studies. The content is systematically and intersectionally presented, based on scholarly analyses, insights, reasoning, and expertise – originating in different disciplines and backgrounds. It endeavours to help especially those who study the sociocultural contexts of children and families in terms of challenges and opportunities, and for possible support.
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This 3-year qualitative study investigated the diagnostic process and the experiences of professionals and families associated with 5 Alaskan students with Fetal Alcohol Spectrum Disorder (FASD). The data revealed (a) an increase in public awareness, but limited provision of services for children with FASD and their families; (b) the use of differentiated instruction by experienced teachers, but beginning teachers who experienced frustration and were less likely to adapt instruction; and (c) the pervasive impact of challenging behaviors, but the limited support provided to families. The results offer insights into FASD and suggest implications for coordinated educational services and family supports.
Book
Cover Blurb: Researching Lived Experience introduces an approach to qualitative research methodology in education and related fields that is distinct from traditional approaches derived from the behavioral or natural sciences—an approach rooted in the “everyday lived experience” of human beings in educational situations. Rather than relying on abstract generalizations and theories, van Manen offers an alternative that taps the unique nature of each human situation. The book offers detailed methodological explications and practical examples of hermeneutic-phenomenological inquiry. It shows how to orient oneself to human experience in education and how to construct a textual question which evokes a fundamental sense of wonder, and it provides a broad and systematic set of approaches for gaining experiential material that forms the basis for textual reflections. Van Manen also discusses the part played by language in educational research, and the importance of pursuing human science research critically as a semiotic writing practice. He focuses on the methodological function of anecdotal narrative in human science research, and offers methods for structuring the research text in relation to the particular kinds of questions being studied. Finally, van Manen argues that the choice of research method is itself a pedagogic commitment and that it shows how one stands in life as an educator.
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Since the first publication on fetal alcohol syndrome appeared in the scientific literature over 30 years ago, there has been a great deal of research interest in the topic. This paper reviews findings within the past 10 years related to causes, frequency, and diagnosis of alcohol-related disabilities, before turning to the impact these disabilities have on affected children, their families and communities. The needs of parents who have children with alcohol-related disabilities are described, including a broad support network, helpful professionals, good relationship with the school, income support, and a strengths-based parenting approach. Finally, barriers that families face in service availability, accessibility, appropriateness, adequacy, and acceptability are reviewed.
Article
The purpose of the study was to describe the challenges of parents of children with a fetal alcohol spectrum disorder (FASD). Nineteen birth, foster or adoptive parents were asked to answer the following question: “What are the challenges you face parenting a child with a fetal alcohol spectrum disorder?” The data were analyzed using multidimensional scaling and cluster analysis. Eight clusters resulted. Parents reported the challenges of preventing setbacks in their children's behavior, making time for themselves, making and keeping immediate and longer-term plans with their child, collaborating with the school, keeping the child involved in social activities, keeping their family involved in social activities, being heard by professionals, and managing their child's behavior problems. The themes were consistent with the literature on parenting children with a FASD, with the exception that participants in the study indicated that they found a lack of respect from professionals with whom they came into contact, challenging.
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In this volume, Dr. Streissguth draws on her life's work, writing on essential issues surrounding fetal alcohol syndrome (FAS) and fetal alcohol effects (FAE). Topics include: diagnosis; teratology and brain damage; physical and behavioral manifestations; education; services for high-risk mothers; employment and advocacy and public policy. The author uses case studies, photos, illustrations, and validated empirical research, and highlights the cultural, racial, and economic diversity of FAS. This book will help physicians, psychologists, social workers, educators, advocates, and families of children and adults with FAS work toward an educated community, a supportive network of legislation and programs, and better futures for people living and growing with FAS. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Article
Thesis (Masters)--Simmons College. Includes bibliographical references (leaves 14-15, 9-10).