Building FASD State Systems: second annual
Each year, approximately 12,000 infants are born in the United
States with Fetal Alcohol Spectrum Disorders (FASD) and suffer irreversible
life-long physical and mental damage. FASD are national problems
that can impact any child, family, or community, but it often lies
with each state to provide services and treatments to help its citizens.
In May, the Substance Abuse and Mental Health Services Administration,
(SAMHSA), and the FAS Center for Excellence sponsored the Second
Annual Meeting of Building FASD State Systems in Kissimmee, Florida.
Last year, the first meeting included 155 representatives from 48
states. This year, all 50 states, Puerto Rico and the District of
Columbia were represented by 170 individuals.
These meetings are an effort to increase state involvement in preventing
and treating FASD, and to bring together state employees and those
involved in policymaking that want to move their states forward
in these areas. State-specific working groups convened at the meeting
to develop five-year goals for building state systems to address
FASD in each state. Our contingent, from Washington state, felt
especially fortunate to have the depth of knowledge and experience
in clinical, policy, and family issues surrounding FASD that we
The Washington state group met the first day with the tasks of
developing a five-year goal, identifying the key tasks involved
in accomplishing the goal, identifying the major barriers in achieving
the goal, and identifying strategies to use to overcome the barriers.
The group agreed on the following goal: “To increase communication
through a Washington state FASD Web site in order to develop a system
of care through integration, coordination and education.”
We learned from other states’ representatives and from the
work of the FAS Center for Excellence that despite the fact that
we have, in comparison with many states, many services in Washington
state, we needed to survey what is currently available and make
this known to citizens statewide. Then, once we have knowledge of
what holes in services must be filled, we can move onto other goals.
The states of New York, Mississippi and Florida have each compiled
a directory of services, and their working groups shared them with
meeting representatives. They also explained how helpful the directories
have been to the populations of their states seeking help for individuals
impacted by FASD.
After each state group identified its goals, we met in teams of
four to six states. Washington state was included in a team with
New Hampshire, New York, Pennsylvania, Rhode Island, Vermont and
Maine. State goals were shared and common barriers and tasks were
Using this information, the states met again within their own groups
and identified three action steps toward developing individual state
systems that would work toward their five-year goals and that could
be accomplished in the next year. The Washington state group decided
to coordinate efforts through the Fetal Alcohol Syndrome Interagency
Workgroup (FASIAWG) to:
- apply for a grant to develop a Web site, using an agency such
as the Fetal Alcohol Syndrome Information Services (publisher
of Iceberg) to write the grant. This Web site will be used to
disseminate the information gathered about availability of services
in Washington state.
- use the expertise of the whole group to diagram a Web site
and its elements; and
- look at other state FASD Web sites for ideas.
During the two-day meeting, there were many excellent presentations
that energized the groups to continue their work on preventing FASD.
The Washington state contingent is especially excited to begin work
on a “one stop” Web site that will encompass information
and education resources specifically for the citizens of our state.
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The ongoing evolution of a social skills
In August of 2003, our clinic – a private speech and language
clinic – began a weekly after-school “Teen Club”
intended to teach teenagers with pragmatic difficulties (including
FASD, ADHD, Asperger’s syndrome, and autism) how to use social
skills in natural situations. Since that time, we have learned much
about serving teenagers, but there is still so much more to learn.
Too many times in education, different fads or ideas are touted
as the magic bullet for different issues, such as, “whole
language reading instruction will help all kids learn to read better;”
or, “more testing will improve our nation’s schools;”
and so on. That’s not to say that there is anything wrong
with the philosophies of these educational fads, but it certainly
is a little narrow to think that any one approach will solve some
very complex problems. The quickly growing area of social skills
training has its share of curriculums and theories that claim to
be a magic bullet. We are not dismissing any of those and we are
not suggesting we have figured out the way to remedy social skills
challenges. Instead, we are offering a picture of what has and has
not worked for us.
Below I describe the process that we have undergone in our efforts
to teach teenagers how to socialize. Please come to your own conclusions
about our process and learn from both our missteps and our successes.
I invite you to share any ideas that you may have after reading
this by sending an email to email@example.com. We are
lifelong learners and are always open to new ideas about how to
teach kids how to socialize.
We have grouped teens not by age but by grade. For example we have
a group for junior high students and a group for high school students.
Our reasoning is based on the idea that the social field is very
different in high school when compared to junior high. We have not
broken down the groups into smaller years (for example, only a freshman/sophomore
group) because we see the older students becoming role models for
the younger ones. Our goal is to have groups with as many as 6-8
participants. However, at this point the groups are smaller because
we are still in the development stage.
We decided that an hour was not long enough, so the sessions are
90 minutes long. This length of time allows for a variety of activities
in addition to conversation. Also, the group time is ongoing; we
do not disband the group after a designated number of weeks. We
are finding that parents request breaks for their teens now and
again because of different events like job searches, extracurricular
activities, family obligations and such.
The evolution of the group
When we began the groups, they were highly structured. Each session
began with a very specific schedule that was carefully planned.
The schedule would be written on a board and it would be followed
closely. After running groups with the same structure for a few
months, it was obvious that some changes were necessary. On paper,
all of the activities sounded great; in reality, there were some
Rants and raves –
Each participant shared something good that had happened to
them and something not so good during the previous week.
THE PROCESS: The purpose of this activity was to structure
a way for the teens to talk about positive and negative events
in their lives. The first time we did this it went VERY well.
The guys brought up many different examples, like getting teased
on the bus, parents going out of town, and having the highest
bowling average on the team. However, after a few weeks group
members lost interest in sharing and responses such as, “I
don’t know” or “nothing happened this week,”
became common. Even with many examples of positive and negative
events their interest drifted away, perhaps due to the contrived
nature of the activity, or due to challenges with “ranking”
activities as a “rant” or “rave,” or
maybe just because an adult was suggesting something that they
never really bought into. While there were many interesting
and lively discussions we eventually decided to move toward
something more natural.
WHERE ARE WE NOW? Currently we begin each session with a few
minutes reviewing the week. This is a natural discussion that
I usually initiate with, “So what have you guys been up
to this week? Why don’t we start with Johnny?” Then
each member of the group takes a turn. Over time, and with some
prompting, the other members of the group have begun to ask
questions of the person talking, too. Sometimes this discussion
will last up to 30 minutes, depending on the discourse and what
else is planned for the day.
Teaching time –
Initially we spent 30-45 minutes talking about a specific social
skill, such as making eye contact, compromising, talking to
adults, etc. This involved role-playing and/or discussion. Sometimes
during the teaching time we performed icebreakers or team building
THE PROCESS: When first putting this together, I drew upon
several curriculum elements and therapy ideas. I would introduce
the topic to the group at the beginning of the session. The
guys were usually respectful during this time in that they would
sit and listen quietly. While the information was excellent,
they were not in the mood for any more teaching in their day.
One group member said, “I’m sick of learning. I
have been learning all day long.” This could be dismissed
as a “teenage thing to say,” but I interpreted it
as: “We have been sitting in classes all day, so if you
want to keep our interest, you had better make this seem as
different from a class as possible.” Consequently, this
section of the group has changed dramatically.
WHERE ARE WE NOW? Compromising, accepting criticism, making
eye contact, controlling tone of voice, dealing with teasing,
managing anger and being flexible are some of the topics that
come up most often. These topics are dealt with directly, usually
in response to something that occurs during a session. We will
be doing an activity like playing a game, talking or preparing
food and a teachable moment will occur. Sometimes it is a positive
example; other times it is a negative example. The key for me
is to listen carefully and choose my battles wisely. When a
teachable moment arises, we pause from our activity and talk
briefly about the incident. If it involves heightened emotions
– usually due to teasing or a sensitive topic –
I will wait until everyone is calm before addressing the skill
(which is sometimes the following week). We will often role-play
the appropriate way to handle a given situation. Currently,
one of the groups is surfing the Internet and learning about
social skills through different Web sites about disabilities.
Snack time –
Since we were meeting from 5:00 to 6:30 p.m., everyone was
hungry. We began to prepare a snack or a meal using a microwave
and a toaster oven.
THE PROCESS: The teens love doing this. They plan each “meal”
the week before, and each member is assigned an ingredient (for
example, for tacos: sour cream, shells, etc.) to bring. The
meals/snacks are those we can throw together with few ingredients
and little preparation. Within a project where each person has
a specific job, the guys flourish and a lot of natural interaction
happens. Sometimes the meal is elaborate (pita pizzas) and other
times it is a simple snack (chips and salsa).
WHERE ARE WE NOW? We continue to prepare snacks/meals during
the session. Occasionally one of the guys will choose not to
participate because of food preferences, but that is rare. It
is frustrating for other group members when someone forgets
an ingredient, but the consequence of not eating that evening
is a powerful motivator for the one that forgot. The hardest
part of this activity is generating easy recipes that everyone
will like. They have not initiated many ideas themselves, and
they don’t always like my suggestions, especially those
that are a little offbeat. They didn’t want to even try
apples and peanut butter.
Game time –
Group members chose a game to play from our game closet (like
Uno, Sorry!, Monopoly and Scattergories) or I chose a game that
specifically promoted social interaction (like Cranium or charades)
because team playing was necessary.
THE PROCESS: This went very well at the beginning. Members
were learning new games and playing team-based games together.
Eventually, though, we had played all of the games at our clinic
that are appropriate for teenagers. The guys really wanted to
play video games, but that was out of the question at the time
(however, teaching them to play video games in a social way
is something that we are considering in the future). Sometimes
differences in cognitive or language skills limit the choices
that the entire group can play.
WHERE ARE WE NOW? Game time has evolved into activity time.
On a rotating basis, one of the members of the group will bring
in an activity for the rest of the group. This has involved
members in selecting games and movies. When we watch a movie,
a great deal of discussion surrounds the viewing; before beginning,
the chooser has to talk about what he liked about the movie
without giving away the plot. Due to time constraints, it usually
takes several weeks to view an entire movie, much to the group’s
dismay. There are usually examples of social skills throughout
the movie (tone of voice, the use of sarcasm, dealing with teasing,
the use of communication to solve problems, and the like) that
we discuss by pausing the movie. When the movie is over, we
talk about the movie and sometimes tie it to other movies that
we have viewed together.
Since the summer weather tempts us outside, we are currently
planning activities at a nearby park. Also, we have been planning
and discussing a group fundraiser so that members can do other
activities outside of the clinic and acquire materials. This
is still in the development stage.
Email updates –
Each week I transcribed the session in an email to the teens
and their parents. I encouraged the teens to reply with answers
to questions posed in the email.
THE PROCESS: Emails are sent each week, allowing an efficient
way for everyone to be informed about weekly activities and
announcements. The emails have opened a dialogue between parents
and myself, as well as providing them a way to initiate conversation
with their teens. The teens were not interested in reading the
emails and only answered the questions that I posed when rewards
were offered. They viewed my questions as homework, which they
felt they had enough of already.
WHERE ARE WE NOW? I still send the emails and continue to include
the teens, but now read them the email at the beginning of each
session as a reminder of what we discussed during the previous
week. My efforts to have them reply or engage in email dialogues
continue to prove unsuccessful.
The most valuable moments of this group have involved teen-directed
activities, natural interactions and adult flexibility. When I tried
to force a “club” into a rigid structure, the members
of the group seemed to sense my anxiety to move on to the next item
on the day’s agenda; consequently, they never really got comfortable
enough for natural interaction to occur. While many of our teens
desire structure and thrive within it, too much structure in the
social arena can be a deterrent to learning. I have had to learn
to be flexible and allow the teens to take control of the activities.
Instead of being a teacher, I have tried to be a facilitator. Of
course, there must be a balance of the two, which is exactly where
the challenge of working on social skills lies. Our evolution continues.
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Discussion of adolescent therapy groups
As one who has conducted adolescent therapy groups for nearly 30
years, I was gratified to read Tony Van Zeyl’s article about
the evolution of his “Teen Club.” Van Zeyl is working
with a particularly challenging group of young people in great need
of an experience that assists in developing their social skills.
He has the special knack of working with this population and engaging
them in a process of enhancing their social competencies. In his
work Van Zeyl has discovered two critical principles that are key
for anyone so brave enough to offer group therapy to teenagers.
The first principle Van Zeyl teaches us is that the best models,
research, manuals, structures and treatment breakthroughs can be
rendered banal by a real group of teenagers. Untutored teens have
a way of refusing to accept what the “experts” say is
good for them; when free to express their own preferences, they
will come up with some amazing modifications. Van Zeyl is to be
commended for his flexibility and willingness to learn from the
real experts – the adolescents we work with.
The second principle he demonstrates is that teenagers are individuals
first, adolescents second and, way down the line, they are individuals
with some specific disability. I believe that adolescence is primarily
a social developmental process, and that in those years the norms
for social functioning set by the peers around them are the most
powerful forces in teenagers’ lives. Adolescents are in a
process of adapting to a very rule-bound and hierarchical subculture
that requires some skills in reading and adapting to social cues.
Sadly, so many of our youth with disabling conditions such as FASD
are unable to compete well in this social atmosphere, even in the
most primitive or deteriorated of adolescent subcultures. But the
rules of engagement, whether our young people can play well or at
all, are in their faces daily. Van Zeyl clearly knows this reality
and has adapted basically good ideas for working with youth to attend
to the “Laws of Adolescence” – staying flexible,
adapting to the moment, not over-attending to parents and playing
to adolescents’ strengths as they emerge.
It is fascinating to see how Van Zeyl’s groups are moving
in the same direction I find my own groups have gone. I think that
what this means is that Van Zeyl and I are both attending to the
fact that our clientele are adolescents first and youth with mental
health challenges second.
Group make-up and time
Both our groups focus on status in school and not specifically
age. I ran a junior high school group in years past, but most groups
have been for those who are of high school age. My group is also
a “rolling group;” new members join when there is an
opening. We also have a maximum of eight members. Many “age
out”, but some choose to leave because they know when they
are done. Continuity of relationships, loyalty to a group and leaving
when the peer group you have identified with in-group has departed
– these are all a part of what adolescence is about.
Evolution of the group
“Rants and raves,” “Teaching time,” and
the structure of discussions
As in Van Zeyl’s groups, the youth I work with also will
be good sports for a while, but with passivity and occasional teasing
they will make it clear when any structuring I want to impose on
them should be jettisoned. My group members also have an aversion
to anything that even looks like school. Natural discussions about
events a youth is inclined to share with the others – but
only in their own way – seems always to work well. That doesn’t
mean that group leaders can’t capitalize on teaching moments.
What continues to amaze me is that mixed with my constructive observations
and suggestions is the load of outrageous and “inappropriate”
suggestions that are all taken with good humor. The members’
goals are to tease the therapist and, in their outrageous humor,
to provide an upside down and backward, hidden constructive implication.
That is the adolescent way. I find that the teaching times go both
ways, and I am constantly learning from the young people I work
“Snack time” – Food and Adolescents
Food is clearly a big deal for adolescents. What I have found
is that providing food, especially teen-friendly food, on special
occasions fits the expectations of adolescents that adults should
be unconditionally nurturing. Adolescents expect to be free to make
their way in the social order, but they definitely want to go home
for dinner. Parents have such a key role in making the adolescent
process safe and secure, and as group leaders we are seen as extensions
of that adult role as mentors. Mentors have some parental-like functions.
Nurturing with food is one of these.
“Game time” – fun in a session
What Van Zeyl and I have both learned is that structuring social
interactions in games or any formal process gets corny for kids.
My experience is that fun and games come in two forms. The first
is spirited discussions of movies, video games, music and other
popular issues. Adolescents gravitate to such topics, and in that
talk there is play for youth and an educational opportunity for
The second form of play in adolescent groups is “tease the
adults,” which seems to bond a group in a common activity
like no structured game could ever do. The trick of group leaders
is to be a cool player where the rules clearly define out excesses
of adult control as well as youthful over-indulgence. These unwritten
rules also mandate breaking of structures that the youth clearly
don’t want and don’t need, and supporting the structures
they do want and need. It is always a peer who will pick up on when
things are getting out of hand and soften the teasing and play.
It is the skill of the adult leaders to handle this with grace and
The response to Van Zeyl’s parent updates highlights a rule
that is crucial for teens. Teens demand a certain confidentiality
in their treatment that is different than what we as adults understand.
They don’t mind us tending to their parents; in fact, if we
handle it right, it is very helpful to them. But they really don’t
want to be a part of that interaction. Any sharing needs to be done
without betraying to parents sensitive topics that may come up in-group.
Likewise, I am careful to never divulge in the group what I have
learned about a teen in an individual session or from parents.
Youth also have different rules for confidences between themselves.
What they choose to share with each other is their business. Youth
gossip and “dis” each other regularly. That is considered
bad behavior and can destroy friendships, but it is also easily
forgiven and, at times, even expected as part of adolescent life.
Group therapy is a setting where rumormongering can be addressed
and youth helped to refine their standards in social interactions.
Group therapy is an excellent treatment modality to help teenagers
develop social skills. However, it is rarely a sustainable form
of treatment beyond staff-controlled settings such as hospitals
or residential programs. Tony Van Zeyl has demonstrated the trick
for making it relevant in a school or outpatient setting –
let the youth determine the format and content of activities and
discussions. He demonstrates beautifully how listening to youth
and easing one’s own therapist agenda allows for an evolution
of the group to become a relevant and positive factor in their social
development. By facilitating and shaping what is an organic process,
adults help youth with conditions that impair their socialization
to get on board developmentally. With the structure of a time, a
place, adult leadership and a set group of youth, even those with
severe challenges will find their way in such a process. I am so
pleased that Van Zeyl has shared this experience with Iceberg readers.
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FASD resources for the classroom
Alberta Learning, a branch of the government in Edmonton, Alberta,
that develops educational curricula for the Canadian province, has
developed two new resources on fetal alcohol spectrum disorder (FASD).
The first is aimed at helping students learn more about FASD and
how it can be prevented. The second offers teachers current information
and specific ideas to better meet the learning needs of students
There are few FASD prevention resources available to teachers,
which is why the September 2004 launch of Teaching for the Prevention
of FASD was so important. The goal of this resource is to raise
awareness of the effects and characteristics of FASD through learning
activities that teachers can incorporate into the Alberta health
and life skills, and Career and Life Management (CALM) programs.
Teachers are provided with strategies, activities and student information
sheets focusing on the prevention of alcohol use and abuse during
Strategies center on three themes: understanding relationships,
dealing with feelings, managing risks and making personal choices.
In grades one to three, students focus on building skills to make
healthy choices. In grades four through 12, students focus on the
same and participate in activities that directly address FASD. For
instance, a grade-seven student may be asked to analyze the social
factors that influence avoidance or use of a particular substance,
whereas a high school student may learn to evaluate choices that
can create barriers to achieving and maintaining health.
“This resource is really about broadening students’
understanding of FASD prevention and teaching students how to make
healthy choices,” says Greg Bishop, Education Manager for
Alberta Learning, and it’s available at just the right time.
In September 2002 a new Alberta K–9 Health and Life Skills
program, and Senior High School CALM program, were implemented in
Alberta schools, and this resource supports these new programs and
their emphasis on healthy life choices.
Teaching Students with FASD, which is subtitled Building Strengths,
Creating Hope, contains background information and terminology that
will help educators understand the current diagnostic definition
of FASD, key considerations for planning effective education programs,
suggestions for how to build a positive classroom climate and maintain
a supportive learning environment, and strategies to assist teachers
with programming for students with FASD. An appendix of reproducible
blackline masters to use with students, parents and other educators
is also included.
Alberta Learning contracted Sandra Clarren, an Iceberg board member,
to edit the 1997 FAS resource and act as the contributing writer
on the new guide. Many other resources were drawn from to complete
this work. The resource has an impressive collection of best practices
that teachers can adapt to meet the needs of their students.
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Brewers in Japan will start using warning
”Five major Japanese brewers will voluntarily start to place
warning labels on their alcoholic beverages in June of this year.
Kirin Brewery and Suntory Ltd. will be placing warning labels on
their regular beer, malt beers and specialty drinks in early June.
Asahi Breweries have said they will start labeling as soon as possible.
Although the labels will only be on beer containers in
the beginning, the five companies have pledged that all alcoholic
beverage containers will have the labels in the future.”
This announcement appeared in several Japanese newspapers this
spring, including Asahi, Yomiuri and Mainichi, and was greeted with
pleasure by those in the FAS Family Information Network who worked
with the Japanese Brewer’s Association to heighten awareness
The Brewers' Association sponsors the ASK (Human Care) group that
investigate issues related to alcohol consumption as alcoholism
rates, drunken driving rates, heart disease, cancer, etc. Until
the FAS Family Information Network contacted them in 1998, they
were unaware of the seriousness of drinking before, during and after
pregnancy. The FAS Family Information Network provided many journal
studies, textbooks (including both of Dr. Ann Streissguth's books
and the 1996 Final Report on the Occurrences of Secondary Disabilities)
and the U.S. Congressional Special Reports to Congress on Alcohol
and Health, to ASK to help them understand the severity of the problem.
In November 2003, ASK and the FAS Family Information Network consulted
together to convene the first Japanese International Conference
on Fetal Alcohol Syndrome, which invited both Japanese researchers
and Dr. Edward Riley of San Diego State University and Debra Evensen
of the national FASD Center for Excellence to participate. It is
felt that this conference was one of the turning points in the decision
to place the warning labels on alcoholic beverages.
The beverage labels will read, "Consuming alcohol while pregnant
or breastfeeding poses the risk of creating developmental problems
in fetuses and babies."
The Japanese government also removed 170,000 alcohol vending machines
from unattended public places in 2001. This was five years after
a massive informational mailing effort to Mr. Naoto Kan, the Japanese
Health Minister, by the FAS Family Information Network.