Families Moving Forward: Promoting confident, creative parenting
of challenging children
Once a family raising a child with FASD has moved through the process
and received an alcohol-related diagnosis, they typically ask, “But
what can I do to help my child with all the learning and behavior
problems he shows at home, school, church, and on the playfield?
Will his diagnosis make any difference?”
Up to this point in time, there have been limited answers to these
important questions. Professionals have been unsure what to advise
or are only able to suggest the usual techniques, and other parents
have only had collected wisdom to share. Systematic intervention
research has not been available. But in 2001, the Centers for Disease
Control and Prevention (CDC) funded a group of the first research
projects to provide this information. These research projects aim
to provide an initial investigation of the efficacy of interventions
aimed specifically at the FASD population.
The Families Moving Forward project, an innovative intervention
research study based in Seattle, Washington, is one of these CDC-funded
projects. The Families Moving Forward model shows promise in helping
to determine and address the needs of children with FASD, their
parents, and the school and community professionals who work with
The primary researchers, Heather Carmichael Olson, Ph.D., and Susan
Astley, Ph.D., from the University of Washington FAS Diagnostic
Prevention Network (FAS DPN), are conducting this four-year pioneering
study, which will be completed in September of 2005. Dr. Carmichael
Olson, as Intervention Director, is the originator of the intervention.
Along with an excellent and caring intervention team, she designed
the project to provide individualized consultation to caregivers,
and developed a research component to provide an initial investigation
of the efficacy of this protocol for caregivers and children with
The Families Moving Forward research project has two basic aims.
First, the project is designed to clearly describe a sample of alcohol-affected
children who present a wide range of behavior/learning concerns,
and to understand the characteristics of their caregivers and the
needs of these families. As part of the project, all child participants
are given comprehensive assessments, and their parents are interviewed
and asked to rate their child and other family characteristics on
standardized instruments. One guiding principle of Families Moving
Forward is that the parent’s viewpoint is essential to creating
appropriate interventions. Systematically gathering and interpreting
descriptive data should make the tasks of assisting families raising
children with alcohol-related disabilities and worrisome behavior
problems less ambiguous.
Second, the Families Moving Forward project is focused on developing
a new, research-based intervention approach. This approach provides
education, support and behavioral consultation to caregivers of
children with FASD who show significant cognitive and learning disabilities
and challenging behavior problems.
The intervention project and many of the materials used in the
project were designed by Dr. Carmichael Olson and the Families Moving
Forward intervention team (Allison Brooks, Kathleen Lehman, Minu
Ranna, and Julie Quamma). The team, along with consultants from
the FAS DPN and elsewhere, drew from empirically supported research
in many fields to organize this approach. A variety of strategies
and techniques were incorporated into the program that provides
a “flow” of caregiver support, education, advocacy assistance,
community linkages, and low-intensity, sustained behavioral consultation,
all tailored to the individual needs of families raising children
with FASD. Specially trained support specialists provided the intervention
in twice monthly, 90-minute home visits. Targeted school consultations
were also provided, and targeted phone consultations were given
to some community providers also working with the families. The
intervention involved 17 to 20 sessions over 9 to 11 months.
The project, which is still underway, involves 52 enrolled children
between the ages of 5 and 11 years of age. The participating children
have all been diagnosed with alcohol-related disabilities at the
University of Washington FAS DPN clinic. In the group selected for
the study, 25 percent of the children met the full FAS criteria
and 75 percent met the criteria for Alcohol-Related Neurodevelopmental
Disorders. As a group, the children demonstrated average intelligence
overall, but all individual children had evidence of clear neurological
impairment. To be included in the project, the children could not
show other, non-FASD birth defect syndromes affecting cognitive
function, and could not show marked global cognitive impairment
or serious conduct disorders. Although some of the children had
experienced considerable environmental risk early in their lives,
at the time of study enrollment they were all living in stable homes.
The children’s home placements varied; some were living with
their birth parents, while others were adopted or in foster homes.
The study was designed so that half of the group of children and
their caregivers received the new, uniquely developed intervention
(in addition to their existing community services), while the other
half were involved only in the community standard of care.
The project is still in progress, but it has received great support
from study participants. Almost everyone starting the intervention
has completed the full 9 to 11 months of services. The intervention
was clearly needed. When initial intake data was summarized, families
did show a need for support. All the children had clinically concerning
levels of acting-out behavior as measured on rating scales. As a
group, the caregivers reported very high levels of child-related
The Families Moving Forward intervention model provides ongoing
support and aims to assist development of caregiver understanding
and skills. Crisis intervention is not meant to be a central part
of the model. With individualized, meaningful, targeted and sustained
support from specially trained professionals, the hope is that a
caregiver will feel less stress, better understand the child, and
be able to more successfully shape their child’s environment.
There are other study goals as well. But the real goal is for caregivers
to feel more confident and creative in parenting their challenging
children with FASD, and feel ready and able to answer the question,
“Now what do I do?”
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Prison: A warehouse for individuals with FASD
As children with Fetal Alcohol Spectrum Disorders (FASD) grow into
adolescence and adulthood, problem behaviors that may have been
only irksome when they were young become behaviors that may, as
adults, bring them in contact with the legal system. These contacts
can, and unfortunately often do, result in sentencing to jails or
At the University of Washington in Seattle, a team headed by Dr.
Ann Streissguth interviewed parents and caretakers of children/adults
with FASD and asked if their children had encountered troubles with
the law during their lives. She discovered that 61 percent of adolescents
and 58 percent of adults with FASD had been in legal trouble. Furthermore,
35 percent of those with FASD over the age of 12 had been incarcerated
at some point in their lives.
Looking from the perspective of the legal system, Dr. Christine
Loock in Vancouver assessed 287 children and adolescents who were
admitted to the Inpatient Assessment Unit of the British Columbia
Juvenile Justice System. She conducted physical and psychological
exams of these young inmates and found that almost a quarter of
these children were diagnosable with either FAS or FAE. The great
majority of them were diagnosed with FAE, showing few or no outward
signs of damage although they had cognitive impairments.
Is prison the right place for people with FASD? There are certainly
many negatives inherent in being incarcerated, but these negative
elements are magnified for those with FASD. They are isolated from
the support of their family and appropriate peers, but those with
FASD particularly need the support of family and peers to help them
successfully function and minimize inappropriate behaviors. They
are unable to participate as productive members of their community.
And, most dramatically, people with FASD are at much higher risk
of victimization while in prison. People with FASD tend to have
a strong desire to please and can be quite gullible; these features
make them easy marks for predators behind bars.
This same gullibility and desire to please, especially to please
authority figures, can also lead to false convictions. There have
been a number of case reports indicating that individuals with FASD
may tell police officers what they think they want to hear, not
what actually happened. They may even confess to crimes they did
When a person with FASD commits a crime, it may be because the
person did not fully understand the consequences of their actions.
Such a person, who does not grasp the cause and effect of their
actions, may not be able to benefit from the lessons learned by
being punished for unacceptable behavior. They may also be unable
to assist their attorneys in their own defense, and may therefore
be sentenced to prison without adequate discussion of alternative
There are, however, two positive features of prison for those
with FASD—structure and predictability. Inmates’ daily
lives are dictated by structure. They are given a strict routine
of when to leave their cells in the morning, when they are allowed
recreation time, when to go to meals, and when to return to cells.
The rules of conduct are explicitly given and consequences of a
rule breach are clearly identified. In situations like this people
with FASD, who function best in a structured environment, often
make model citizens and inmates.
It is a shame that appropriate alternatives to prison, emphasizing
the positive elements of prison with its structure and predictability,
while eliminating the negative aspects, are neither readily available
nor often sought in cases of people with FASD. Appropriate alternatives
to prison for these individuals can include placements in halfway
houses, group homes, treatment centers or electronic monitoring
at home. In all of these cases, emphasis must be placed on establishing
an environment that is well structured with predictable rules and
consequences. In these alternative settings the person with FASD
can continue to participate in the community but his or her behavior
will be more closely monitored.
The need for appropriate treatment of people with FASD who have
run into trouble with the law has been the recent focus of Kay Kelly,
the Project Director of the FAS/E Legal Issues Resource Center at
the University of Washington’s Fetal Alcohol and Drug Unit.
She and Professor Eric Schnapper of the UW Law School have compiled
a listing of legal cases that have involved people with FASD, as
well as concrete recommendations for dealing with police. For those
seeking resources and contact information, visit http://depts.washington.edu/fadu/
and click on the “Legal Issues” tab. By increasing awareness
among all individuals involved in legal issues, perhaps we can reduce
the disproportionate number of teens and adults with FASD in our
prisons and juvenile detention centers.
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Sneaking in the back door—Basic strategies for developing
social skills in teens
Teens diagnosed with disabilities such as FASD, ADHD, high-functioning
autism and Asperger’s Syndrome encounter a variety of challenges
throughout their high school years. Each disability offers its own
unique roadblocks and hurdles. The first step to breaking through
any roadblock is recognizing its existence; if an awareness of a
challenge is denied or ignored, all of the skill training in the
world is for naught.
There are certain challenges that can be quantified in objective
and impersonal ways. For example, difficulties with reading comprehension,
math computation, and life skills such as cooking, shopping, and
bus riding can all be practiced and calculated using checklists
or other standardized measures. These standardized measures not
only assist the teachers and parents in targeting areas of need,
but also help the student to build an awareness of their own limitations—it
helps them to see the roadblock. As this awareness is heightened,
however, self-esteem can be negatively affected; the use of objective
measures makes it an easier pill to swallow by discussing the results
of these tests. It is the test, not a teacher or parent, that is
pointing out where the breakdowns occur.
What happens when one of the major challenges is in the areas of
social communication and social interaction? We all use social skills
whenever we interact with the world in general. Social skills reflect
basic parts of our personality—how we talk, what we say, how
we look at people, and how we get what we want—just to name
a few. There are few objective measures of social skills that would
allow for an impersonal assessment of skills. The measures that
do exist have difficulty assessing functional skills. For example,
the teen may be able to answer test questions about situations concerning
how to act or what to say, but in real life they are unable to appropriately
deal with the situation. Constructive criticism of social skills
can deal self-esteem a major blow and lead to denial and sometimes
outright rebellion. This constructive criticism can be viewed as
a personal attack without objective reasons to back up the statement.
How can an awareness of social challenges be built without tearing
down a teen’s self esteem?
The teen needs to know you are a person with opinions and perceptions
that are valid. It is easy for him to say, “You just don’t
understand what it is like to be a teenager,” and write off
everything you say. Your first job is convincing the teen that you
DO understand what it is like to be a teenager. Remember what it
was like to be a teenager and how difficult it was to accept guidance
from adults. For the teen to accept your help, he needs to trust
that you understand him. To build this trust and understanding,
you must establish a solid relationship based on mutual respect.
This process of relationship building can help teens begin to build
an awareness of social skills.
I have found the following strategies helpful when building a relationship
- Take a GENUINE interest in their interests:
If you would like to help build social skills, you have to get
to know the teen better. You need a context in which to communicate.
So, look for things in common to talk about and don’t put
down the interests of the teen. All teenagers are exercising their
independence, and if you would like to help them, you need to
get to their level. Ask them to share their interests with you.
Do a little research and find out where Justin Timberlake came
from, who the White Stripes are, or what an RPG video game is.
The key is to be genuine. Be who you are—don’t go
out and buy the new Evanescence album and dye your hair purple
unless you are a person that would do that anyway. Teens can sense
an adult who is trying too hard from a mile away. However, if
you take a genuine interest in their lives, you are modeling for
them how to take an interest in others. By stepping outside out
of your comfort zone, you are modeling flexibility and perspective
taking. She might even take an interest in things that you like.
- Don’t be scared by their music or movies:
Whether you like it or not, the media is a powerful force in the
lives of all teenagers. When an individual has difficulty with
social skills, it becomes even more powerful because it is sometimes
the only way that they connect with the world. Whether it is through
video games, movies, music, TV shows, or the Internet, they are
learning ways of interaction from these mediums. Look and listen
for things that you enjoy and share them with the teen. You may
be shocked by the use of offensive language or images; nonetheless,
as you make comments like, “when I was a kid . . . ”
remember how offensive Led Zepplin, the Beatles, Elvis Presley,
and Bob Dylan were to many people a few decades ago. Remember
nothing makes something “cooler” in the eyes of a
teenager than that which drives adults crazy. I am not suggesting
that limits need not be placed on what they watch, but just remember
that times change. Again, you are outside of your comfort zone,
and the process of overcoming your discomfort is an important
one for the teen to observe.
- Discuss the merits of what they like: Regardless
of their interests, I would argue that there are always positive
aspects to discuss. Many offensive movies contain humor that is
based on satire and parody. Talk about what makes a game interesting
or challenging. Can they explain what makes a movie funny or what
makes a song a great one? Maybe you can find parallels between
some of your own interests and theirs, which can open up a whole
world of interaction. Plus, social skills are everywhere, and
it is likely that you will find examples in music and movies that
resonate with the ideas that you are trying to convey.
- Talk about your own social challenges: Social
skills are rarely directly taught in school; consequently, each
one of us has learned about how to interact with the world in
our own way. Be honest about challenges that you have had over
the years and challenges that you currently have in the workplace
or with friends. For example, talk about how you dealt with the
person at work that always complains about his spouse when you
are trying to get work done.
- Ask the teen for advice: If you ask a teen
for advice, the teen learns that his opinion is valid and feels
respected. You get to model how to ask for help and get a glimpse
at problem solving skills. The teen gets to hear about the consequences
of certain behavior. For example, if the teen advises to tell
your coworker to “shut-up” or “kick his butt,”
don’t just tell him he is wrong. Talk about the realistic
outcomes to those actions. If similar situations arise in the
lives of the teen, remind him of the advice that he gave to you.
- Stay in contact with teachers and parents:
When working toward improving social skills, getting a full picture
of the student is very important. Teachers and parents need to
open the lines of communication. Students can act very differently
at home and at school. A quiet student at school may be rebellious
and difficult at home or vice versa. Additionally, in order to
preserve self-esteem, a teenager may not choose to share her challenges
from another context without some prompting. The biggest challenge
here is not to destroy the trust of the teenager by making her
feel “watched” or too closely monitored. Keep the
teen aware that the lines of communication are open and why they
are open. When you become aware of certain challenges, recognize
the difficulty of dealing with a problem and listen to the strategies
the teen has used to solve the problem before offering alternate
Keep in mind that none of these strategies will work overnight.
Everything takes a great deal of time and patience. There are many
strategies that are effective in improving social skills such as
role-playing, peer modeling, support groups, and skill practice.
However, without a desire to improve skills, it is extremely difficult
for the teen to buy into the concept that they need to learn any
of those strategies. By using the ideas contained in this article,
you are creating a safe environment for the teen to begin work on
improving his or her social skills. Hopefully, in the process, you
will learn more about yourself and deepen your relationships with
your children, students and maybe even your peers.
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Poem: Can’t Stop Me
As deep as the mind may be,
There’s no hole that will swallow me,
No mountain nor ocean that will out concur me,
There’s no such rock big enough to break me,
And even in the darkness I can still see.
If I try there’s no loss for I will always succeed,
There’s no purpose that can defeat me.
No words you can say that will take away my possibility,
And even temptation’s I will never allow negativity,
All the trapped depression Iv released as positive energy.
Not all the pressure of any nature can force me,
No man will I let hold onto my future’s key.
I will not crumble over society,
Cave into images in magazines,
For I will not be jealous or have envy ,
I am happy just being me.
I will never rely on just reality,
But wont be mesmerized by my fantasy.
Fear can’t capture me
No matter what that fear may be.
No emotion I may have will drown me,
For I will ride the waves of life’s big sea.
If I fall I will get off my knees,
Stand up tall, constantly.
Nothing will break my self-esteem,
No matter how hard life can and will be
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In time we are unveiling more of the iceberg
The first issue of Iceberg was printed
and distributed in February 1991. According to an article by Barbara
Von Feldt in that first issue, the Fetal Alcohol and Drug Unit (FADU)
at the University of Washington in Seattle had received more than
600 letters from across the United States and Canada requesting
information and help for their loved ones with FAS/FAE. The events
preceding this influx of mail were the publication of the book The
Broken Cord by Michael Dorris that featured Dr. Ann Streissguth
as a source of information on FAS, and the ABC 20/20 television
segment on FAS featuring Dr. Sterling Clarren and Dr. Streissguth,
both from the FADU. These letters had the same request, over and
over: “Please help us with our situation—we are desperate
for information in dealing with FAS/FAE.”
One response to these cries for help came from Dr. Streissguth,
who, along with our first editor Dale Leuthold, called together
a group of individuals already dedicated to finding answers. Her
proposal: to create an informational newsletter to reach out to
as many people as possible, both parents and professionals. Were
we interested? Absolutely. The founding members of Iceberg
included professionals and parents such as Donna Burgess, Sterling
Clarren, Diane Davis, Dale Leuthold, Richard McKenzie, Sandra Randels,
Ann Streissguth, Marceil Ten Eyck and Barbara Von Feldt.
In 1990, this group formed the Fetal Alcohol Information Services
(FASIS) of Washington State, which was incorporated as a non-profit,
non-discriminatory community organization. We agreed that, although
the newsletter would be our first project, we could organize other
information-disseminating events such as conferences, and advertise
a meeting for parents that we hoped would materialize into an ongoing
parent support group. We also agreed that we would edit each Iceberg
issue as a group, and that decisions would be made on the basis
of group consensus. We have maintained this policy to this day.
The following statement by our editor on the front page of the first
Iceberg issue in February 1991 speaks
to what we wanted this publication to be:
“The logo (an iceberg) symbolizes a concept
that applies both to Fetal Alcohol Syndrome/Fetal Alcohol Effects
(FAS/FAE) and to the powerful social, political, and personal ramifications
that are associated with this disease. As small part of the problem
is visible…but the bulk of the problem is obscured and hidden.
The focus of this newsletter will be a select group of people. We
will be talking to, for and about the problems and issues faced
by children affected by prenatal exposure to alcohol AND to the
parents, families and others concerned about them. Our focus is
simple. The problem is enormous and complex. We will procure accurate
information about the symptoms, physical abnormalities, neurological
damage, and psychological characteristics of FAS/FAE children. You
will see statistics, lists and the dollar costs involved. We will
facilitate formal and informal sharing of experiences by members
of FAS/FAE families. We will promote formation of parents’
support groups. This newsletter will devote significant coverage
to letters and articles by families and affected children, telling
their own stories, problems and success. It is important to openly
share the intensity of feelings that generate in families when facing
the day-to-day frustration of living with FAS/FAE. We will keep
track of and inform our readers about the political realities that
influence the availability of services to FAS/FAE children. We will
publicize activities that promote public awareness of the problem
of FAS/FAE. We will salute public officials that support policies
of services that are beneficial to the needs of FAS/FAE children.
We will keep our readers informed about legislation on both local
and statewide levels that has influence on services for these children.
We will make available all the information we are aware of about
legitimate help available to FAS/FAE children and their families.
This will include professional services such as physicians, therapists,
social workers, psychiatrists, psychologists and treatment programs
that recognize and have experience in the field. We will be specific
about advice on government programs, what they are and how to get
eligible children and families into these programs. Like an iceberg,
the visible portion of the problem gives us warning of hidden danger.
We are not sure of the extent of that danger. We don’t know
how big it is. We are sure the danger is real, but we are in the
process of learning how to best use our resources and energies to
fight it. We ask that you join us in this difficult task. –Editor”
After an announcement in the first issue asking for parents to
contact us if they were interested in forming a parent support group,
we had a huge response, and Diane Davis and Marceil Ten Eyck hosted
the first (we think) parent support group about FAS/FAE in this
country. From these beginnings, a combination of ongoing support
and family-to-family and parent advocacy has flourished. FAS/FRI
(FAS Family Resource Institute) emerged from this parent group.
We have evolved editorially from those first days. Reading the
above excerpt from our first issue, I noted that we no longer say
“FAS/FAE children,” rather, “children (or an individual)
with FAS, or FAE, or FASD (Fetal Alcohol Syndrome Disorders).”
The terminology changed as we agreed that individuals are people
first, and FAS is only a description or diagnosis. I also noted
that the focus has changed from just children with FAS/FAE and their
caretakers, to all individuals with FASD—children, teenagers
and adults. All the rest of the subjects we wished to explore and
bring to the newsletter have been tackled, and the Iceberg has fulfilled
the dream of the founders. Although the membership of the board
has changed throughout the years, our mission has remained constant.
Until the fall of 2003, Iceberg was
a printed newsletter distributed by subscription and at trainings,
seminars and conferences; wherever people were coming together around
the subject of FAS/FAE. As printing a paper newsletter became more
expensive and difficult to produce, the board decided to move our
publication online, and made the provisions to change. The most
important thing, we felt, was that Iceberg
could now reach a much larger audience. In December 2003, our first
online newsletter was published, and we couldn’t be more proud.
We have also always made reprints of Iceberg
articles available for a small charge, but now they will be available
free on the Internet.
Looking back through the issues of Iceberg,
I see a wealth of information. Here a reader can track the FASD
history of research, advocacy, politics, and treatment over the
past 13 years. We hope that you will continue to enjoy the Iceberg
online, and if you are a new reader . . . welcome to our family.
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Iceberg Editorial Board members Kieran
O'Malley and Ann Streissguth flew to Washington D.C. for a one-day
"summit" on FASD terminology, sponsored by NOFAS in an
effort to simplify and clarify current terminology. The following
statement was released at a press conference on April 15, 2004.
Additional comments about the importance of new terminology are
Heralds New Era for Prevention and Treatment of Fetal Alcohol Spectrum
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Parent support group advances FASD advocacy in Ann Arbor, Michigan
Our small support group of parents raising fetal-alcohol-affected
children began to meet informally after we met at a local conference
on FASD organized by parent Barbara Wybrecht in 1992. Eight years
later, our purpose expanded from meeting as a support group to community
We had invited the Director of Developmental Disability services
at our local Community Mental Health Agency to join us in our support
group meetings to explore ways of improving services to fetal alcohol
affected clients. From these interchanges we were able to arrange
in-service trainings on FASD for community mental health staff,
parents and other interested parties, including educators, health,
housing and criminal justice professionals, with funding provided
by our county’s Community Health Board, augmented this past
year by funds from our FAS Diagnosis Clinic.
In 2001, our in-service speakers, with the exception of our keynote
speaker Barbara Wybrecht, were drawn from our community, and topics
ranged from clinical and diagnostic services, public safety and
justice, to living issues (housing, employment and substance abuse).
In 2002, we expanded our scope and invited speakers from other states
to speak to us about treatment and vocational rehabilitation issues.
By fall of 2003, we were able to host professionals in FASD treatment
and research from throughout the country. We offered a panel discussion
that touched on topics such as behavioral issues in FASD, coaching
approaches for affected clients, and parenting children with FASD.
In addition, in 2001 several of us in the community attended trainings
sponsored by the Michigan Department of Community Health about giving
presentations on FASD. Since then we have spoken to health classes
in the public schools, and to staff members of community agencies/organizations
such as Head Start, Foster/Adoptive Parents, the Shelter Association,
Women Outreach Workers, the Public Defenders Office, drug treatment
facilities and the Ann Arbor Police Department, as well as to nursing
students, LPNs, foster grandparents and grandparents who are parenting
relatives. We learned from local community mental health staff members
last year that because of our educational outreach they have added
FASD to the list of disorders to watch for when screening people
applying for services. And we have heard many professionals assert
that information gained from these trainings and presentations will
help them look at their clients in a new light.
While our beginnings were small, we feel we have effected real
change in our community. We urge parents everywhere to foster in-service
trainings for their local social services agencies, and are glad
to serve as a resource for such grassroots efforts everywhere. We
can be contacted at 734-662-2906 or at firstname.lastname@example.org or email@example.com.