Reaching Out and “Recovering Hope”
For me, part of a long cherished dream has been to find the means
to reach out to other birth mothers. These are mothers who drank
while they were pregnant and are trying to come to grips with the
intense guilt, grief, shame and stigma connected not only with being
a woman and an alcoholic, but being the mother of a child with FASD.
Since 1989, when my youngest daughter was diagnosed with FAS, I
have worked hard to learn about how my drinking impacted my two
daughters, how to parent them appropriately, and how to advocate
for them and teach them to advocate for themselves in the complicated
world of school and, later, work. This has been a full time job.
Now that my daughters are ages 29 and 35 and are navigating the
world as adults with less need for supervision and constant support,
I find myself turning to trying to find ways to help other birth
mothers walk the path that I have been walking.
That is why I was pleased that, along with Julie Gelo – also
an Iceberg board member – I was invited to serve on the steering
committee for the FAS
Center for Excellence. Here we have been among the group of
birth mothers helping to implement the FAS Birth Mother’s
Network, which is high on the list of the Center for Excellence’s
priorities. Among these our efforts to develop and fund a network
of birth mothers, we have worked for the following objectives:
- Convene a summit of birth mothers to assess their needs
- Develop/expand support groups
- Develop a cadre of birth mothers to provide trainings/presentations
at conferences, meetings, and community events
- Develop a video profiling birth mothers for use in substance
abuse treatment programs
- Evaluate impact of video with women in treatment
video that Dr. Charley Huffine has reviewed in this issue (see “Recovering
Hope: Mothers speak out about Fetal Alcohol Spectrum Disorders”)
is the fruition of our efforts as an advisory group to the film
process. For some of us, it was also an opportunity to reach out
and share our own stories.
Michael Skinner, the director, was amazingly sensitive to each
of us as he took us through the process of phone interviews, and
then to actual filming. The team came to us, in to our homes and
places of work, to do the filming. As advisors, we viewed two drafts
of the video before it was finalized. Following viewings of the
unfinished products, we had long conference calls to critique and
recommend changes. Michael took our many, loudly voiced comments
and put together precisely what we were hoping for in a film, while
also making sure the content was consistent, clear and accurate.
We were all thrilled with the final product, and the feedback from
viewers has been consistently positive.
This video will be distributed to addiction treatment facilities
nationwide, a powerful beginning in the process of reaching out.
Copies (order #CR-69) may also be ordered free-of-charge by contacting
SAMHSA’s National Clearing House for Alcohol and Drug Information
(NCADI) at 800-729-6686 or visiting ncadi.samhsa.gov;
only VHS-format is available at this time.
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New book explores our “Damaged Angels”
Damaged Angels is a book about the happiness and frustrations
of raising a child with Fetal Alcohol Spectrum Disorders (FASD),
written by Bonnie Buxton. This book is extremely well written and
easy to read, giving important information that can be invaluable
to anyone involved with someone diagnosed with or suspected of having
FASD. Ms. Buxton, in her descriptions of her own and other parents’
experiences with their children – whether biological, adoptive,
or fostered – clearly presents the positive and negative experiences
that are so amazingly common when coping with this disorder. Despite
a few errors in reporting some of the scientific data about FASD,
the underlying message of this book remains clear and accurate.
One theme that continually surfaces throughout the book is the
frustrations experienced by parents and guardians trying to deal
with professionals who are not conversant with the effects of prenatal
alcohol exposure. I wish I could say that these situations are uncommon,
but unfortunately, they are all too often true. Most professionals
tend to focus primarily on their area of expertise. Therefore, like
the old story of the three blind men describing an elephant, professionals
from different disciplines often look at only one aspect of a person
with FASD, and base their diagnoses and treatment plan on this perspective.
While the chosen aspect may be valid, the underlying issue of FASD
is the brain damage that is caused by the prenatal alcohol damage,
so looking at only a single aspect of the patient’s behavior
won’t give the professional a full view of the patient’s
range of weaknesses and strengths.
On a related note, one of the missions that I have had in my nine
years working with this disorder has been to inform professionals
about the damage of prenatal alcohol exposure. Whenever I give a
lecture, I ask professionals if they have heard about FASD and whether
they have worked with someone they suspected of having FASD. When
I first started, very few claimed to have experienced FASD in their
practices. However, lately, the majority of the people I speak to
acknowledge that they have worked with someone with FASD and want
to learn how better to help them. Therefore, although I believe
there is still a long way to go, I think that professionals are
gaining more knowledge and will be better able to work with people
with FASD more appropriately and with more sensitivity as we move
further into the coming years.
Another frustration discussed in the book, and described by many
people working with FASD, is the difficulty of getting a diagnosis
once FASD is suspected, and subsequently how this diagnosis changes
everything. Finally receiving a diagnosis of FASD can be one of
the biggest and most useful treatment interventions because it dramatically
changes the expectations and perceptions that people have of the
In this book, Ms. Buxton does a lovely job of describing how vitally
important it can be getting support from others who are also dealing
with FASD – even if those individuals are separated by thousands
of miles and can only converse over the Internet. The success stories
Damaged Angels describes always occur in the presence of
family and social systems that understand FASD and offer highly
structured support for the affected individual and their loved ones.
I especially enjoyed Ms. Buxton's description of the “superparents”
who are dealing with the same issues as other families affected
by FASD, but seem to be forever tireless, creative and amazingly
There are two issues discussed in the book that I feel are somewhat
misleading. The first issue is Ms. Buxton’s use of the term
“survivors” of FASD. To me, the term survivor implies
that after treatment the individual is free of the disease, with
no symptoms persisting—like cancer survivors. This is probably
not the interpretation that Ms. Buxton intended when using this
term, but I worry that it's use could give the impression that if
a person with FASD is performing well, he or she is essentially
cured, and thus service systems may be relaxed or terminated. For
individuals with FASD, losing these supports often result in restarting
the cycle of problems, because with fewer services and less structure,
behavioral problems and difficulties re-emerge. We have seen this
many times with children and adolescents who are graduated from
services such as residential treatment. Because they are doing well
in the residential center, it is believed that they should be able
to generalize this behavior and function well on their own; however,
more often than not, the individual rather quickly falls back into
the same behaviors that caused them problems before treatment.
There is a second issue that crops up frequently in this book that
I would like to caution readers about: over-generalizing the diagnosis
of FASD and seeing it everywhere. As a researcher who specializes
in FASD, I, too, fall into the trap of wearing my FASD-colored glasses
and attributing many cognitive disabilities, behavior problems and
physical characteristics to the possible effects of prenatal alcohol
exposure. I always need to remind myself that there are many other
possible causes of these deficits and that focusing on them solely
as symptomatic of FASD can do a great disservice to individuals
who may have genetic disorders, traumatic injuries or other unrelated
illnesses that should be more appropriately diagnosed and treated.
Unlike many professionals and people who don’t recognize FASD,
we tend to see it everywhere.
Despite these concerns, Damaged Angels is a compelling
story about living with FASD, and the joy and sorrow that accompany
it. I found it to be an engrossing book and would recommend it to
anyone, professional and public alike, with an interest in learning
about the realities of FASD.
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Chipping away at preconceptions in a small
Susanville, a town of 17,000 people (half of whom are incarcerated
in one of two state prisons there), has just been graced with one
of the 20 five-year, half-million-dollar SAMHSA grants.* The road
to this remarkable milestone began about five years ago, when a
good couple raising their grandson started chipping away at the
stony ignorance about prenatal alcohol exposure that is so common
all over California—from sophisticated cities to isolated
rural areas like ours.
Phil Parry, the grandpa, started out sharing information about
FASD in meetings of the Lassen County special needs advocacy group.
We credit Phil’s big heart and equally big stubborn streak
for the amazing progress Lassen County has seen since then…he
walks into the offices of county supervisors, physicians, school
boards and anyone else he thinks should be aware of fetal alcohol
damage, and doesn’t leave until his quarry has gotten an earful.
The approach of Phil has inspired some quick getaways, but eventually
he always gets his point across.
Spurred by his efforts, the County Office of Education has sponsored
a series of conferences and workshops with speakers such as Ed Riley,
Dan Dubovsky, Susan Doctor, Julie Gelo, Vicky McKinney and Jocie
deVries, and myself. Around 150 people usually attend these conferences,
and a dedicated core of about six people has emerged from various
agencies as well as non-official parts of the community.
A little over two years ago, an official with Child Protective
Services put out a general message to the effect that her department
was NOT going to create more trouble for itself by identifying children
with fetal alcohol disorders. There is nothing more galvanizing
to the independent (some might say contrary) nature of this community
than to be told something is off-limits. Understanding that the
county was not about to create diagnostic capacity here, Phil and
his lawyer created the nonprofit agency Fetal Alcohol Services,
Inc., for exactly that purpose.
Meanwhile, down in Santa Clara County, we were happily diagnosing
away, having started a diagnostic clinic at our county hospital,
patterned after the one at the University of Washington (UW) in
Seattle. We saw family after family having obtained for their child
the familiar exhausting series of inadequate, usually insulting,
and frequently damaging prior diagnoses. You would have thought
we were engaged in some tragic endeavor if you peeked in on one
of the diagnostic sessions. Often there were tears streaming down
the faces of the caregivers—and often our own. Frequently
relief brought on these tears as the parents realized that: “Finally
someone understands!! We are not crazy!! We do not
need another inane parenting class where they tell us about
the little sticky charts!”
This period of functioning clinics lasted about 18 months, during
which we saw roughly 90 children. It was certainly not a money-making
endeavor, as all who have attempted similar tasks can attest: Four
professionals spending the better part of a half-day on one patient
could, if billed privately, run upwards of $2,000. As it was, Medi-Cal
reimbursed on a fairly paltry basis. We were supported by grant
funding, and could have probably secured more, but we were unceremoniously
shut down before we had a chance to try.
A new boss had come in like a large dark cloud. A young physician
who believed he knew all about FASD—but in fact was typically
undereducated on the subject—insisted on a strict “strength-based”
approach. He objected to the term “disorder,” believing
that strengths should be the sole focus of the diagnostic session
and the report-back. As another adoptive mom on the team phrased
it in an exquisite attempt to illustrate the folly of this approach:
“If a child comes to you with cancer, do you say ‘Johnny
has excellent cell replication skills?’” It
fell on deaf ears.
Very shortly thereafter, we understood that the diagnostic system
had had its day in Santa Clara County, and now that day was over.
We on the team felt like road kill. Flattened. Twice, diagnostic
clinics almost came to fruition in San Jose, the county seat, and
twice there was a roadblock in the process that stopped them short.
Meanwhile, Phil was, in his “never hurts to try” way,
badgering me to come up to the mountains and work on starting a
clinic there. During the heyday of our Santa Clara County clinic
this was no more than an ongoing joke between us. But there came
a day when, after one more awful experience with county bureaucracy
in San Jose, he called with an offer of a small contract to work
on grants and do a little training.
I took it, and am glad I did so. The ground of fetal alcohol awareness
in Lassen County had been cultivated over the prior five years to
the point that relevant seeds rarely do not flourish, and I count
myself in that sense, too. Now I get many heartfelt invitations
to speak, to write, and to sit in with multidisciplinary teams.
I am constantly creating linkages and am able to generally grow
And Phil is focusing on a particularly needed direction: prevention
among high school and middle school students. He is promoting a
curriculum developed by Arc Riverside called “FASTRAC”
–a peer education approach that appears to be enjoying good
success so far, with kids telling us that they listen to their peers
much more willingly than they would listen to adults teaching this
material, and that it has made a big difference in how they will
react to any pregnant friends who drink. (Arc Riverside can be contacted
The California Endowment, a large health-oriented foundation, has
also seen fit to support the growth of our little grass roots nonprofit
this year. We are conducting a needs assessment: talking with agency
staff, professionals and consumers to get a good sense of what the
This has been a community effort, with many sources pitching in.
We just had our fourth in a series of Town Hall meetings in St.
Paul’s Lutheran church, thanks to Pastor Vic (and Phil, who
is Head Elder there). About 20 people have attended the meetings
each time, including the District Attorney, one of the county supervisors,
various social-worker types, people in education, and a wide variety
of others. This group has evolved into the planning group for the
So far, not surprisingly, we have identified this as the “big-picture”
need: A community-wide, whole-person, lifelong support system that
supplants the current punitive, unrealistic and largely unsuccessful
set of agency services. Included in our list of needs is, of course,
a diagnostic clinic based on the UW model.
Other specific ideas also spin off in these conversations, such
as supported housing and employment, a cadre of volunteer “do-fers”,
a universal intake that includes evidence of fetal alcohol issues,
and fetal alcohol awareness for every multidisciplinary team across
the systems. We also recognize the definite need for “scaffolding,”
or a protective framework, for families in danger of child removal,
taking into account the needs for extra understanding, structure
and encouragement for mothers with possible FASD.
It is an exciting time to be here where the high desert meets the
pines, where quartz crystals stud the hillsides next to petroglyphs
so old no one even knows what they mean any more. There is a deep
spirit of community (no road rage!), and resourcefulness born of
much necessity. The SAMHSA grant gives us the wherewithal to bring
our dreams out into real life. Because our entire Health and Social
Services group is working as a coherent unit we believe we can pull
together something great, not just patchwork, and not in competition
with each other.
We know we will meet bureaucratic obstacles and closed minds, not
to mention serious budgetary limitations. But from here, it looks
like awareness of the issues surrounding FASD may have reached critical
mass, as it now appears to be growing without extra pushing and
pulling from the outside. Next we build the bridge to action: policy
change, culture change and concrete supports.
This whole endeavor owes a gigantic debt of gratitude to the Seattle
people—generous comrades, you started me on this road eight
years ago, you breathed wind into Phil’s big sails, and you
light our collective way into the future. We salute you, we thank
you, and we will certainly lean on you again from time to time!
*This is technically not a grant; it is a subcontract with Northrop
Grumman, the company administering the SAMHSA FASD Center for Excellence
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Recovering Hope: Mothers speak out about FASD
What a pleasure it was to see the video, Recovering Hope: Mothers
Speak Out About FASD. As a person on the Iceberg editorial
board and in the world of FASD, it was inspiring to see many friends
explain their unique circumstances and their family challenges.
For those who may have less experience with FASD, this video will
be an enlightening and moving experience. I am eager to show it
to many different audiences in the world of mental health, particularly
within children's services and our chemical abuse and dependency
services community. It presents so much information that could be
critical for family members and professionals alike.
Recovering Hope is really two programs of about 25 minutes
each. The first focuses on how mothers with children affected by
fetal alcohol exposure came to find out about their conditions,
its impact on them and the support they got from the growing community
of families with affected kids. The second program focuses on those
coping with the challenges of raising children struggling with disabilities
related to fetal alcohol exposure. Parents of all backgrounds contributed
to this video, as did some key professionals.
The two programs cover all aspects of the field of fetal alcohol
research. Ann Streissguth, PhD, the "mother" of FASD research
and advocacy, presents key information and advice to pregnant moms
regarding the potential harm to their babies by drinking while pregnant.
Through the stories of the mothers, the evaluation process is shown
in a way that should allay anxiety in those who consider seeking
The second program shows the amazing inventiveness of mothers in
raising their children who have FASD as they find ways to help their
children work around challenges. It emphasizes the diversity of
disabilities that are embraced within the term FASD. All of the
individual family stories are inspiring, but what stands out for
me is the amazing support emerging within the parent groups formed
around FASD evaluation and treatment programs.
There are a number of brilliant mothers who have emerged as mentors
and advocates for those needing support in coming to grips with
their children’s disabilities. The importance of support from
families who had been through the same travails cannot be understated:
The testimony of the mothers in this video illustrates this point
grandly. This was exciting for me to view as it so completely affirms
the efforts being made in many other subsets of the mental health
As the medical director for child and adolescent programs for King
County in Washington state, I have been affiliated with a federal
grant program that promotes system of care reform and has defined
and perfected the wraparound process as a key tool for improving
outcomes for at-risk children. These grants serve some of the most
difficult and challenging children in our communities who have not
been well understood in conventional services. We have found that
the wraparound process enables families to have access to a more
value-based and culturally competent service. The concept of a wraparound
process begins with parent empowerment and embraces the idea of
parent support and mobilizing natural community supports; it is
about parent professional partnerships and a wise use of professional
services. What I saw in the Recovering Hope video was an
exquisite expression of these values and principles.
In the larger arena of mental health policy there is a great deal
said about recovery as a concept that transcends its origins in
the drug and alcohol field. It now applies to the broadest array
of human problems, including brain damage and dysfunction, as well
as the family problems that accompany the guilt of having damaged
one’s baby with fetal alcohol exposure. Recovery is about
redefining the tasks presented to a family by a disabled child and
of discovering hope. It is about the joy in achieving goals that
allow for a sense of full participation in one’s family and
community. This is what Recovering Hope provides the viewer.
The brave women in the video are the inspirational heroines. In
the course of their recovery from alcohol addiction, these women
were honest enough with themselves to face the truth regarding their
child's disabilities due to FASD. Their bravery in addressing why
their half-grown children are unable to think and learn well, and
their children's acceptance and forgiveness are gripping.
This video transcends the particular issues of raising children
with FASD. It is a model and an inspiration for all who work in
the fields of human services or are served by these systems. I highly
recommend owning and sharing this wonderful video.
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My story from FAS to REUNISAF
I started working as a student at Reunion Island Hospital* in the
Department of Psychiatry for Children in 1995. This was the first
time I had met children with Fetal Alcohol Syndrome (FAS) and had
heard about FAS. I was just finishing medical school and nobody
had taught us the effects of alcohol consumption during pregnancy.
One of my professors, Dr. Thierry Michaud Nerard, was very aware
of these effects and so he asked me to give an overview of Fetal
Alcohol Spectrum Disorders (FASD) for his unit. Soon after that,
professors from other pediatrics and obstetrics units asked me to
teach their crews about FASD. Subsequently, my professor proposed
that I take care of all the children with FASD in his unit; I was
then to follow newborns and pre-adolescent children.
While I was working with these children, I saw so many families
affected by FASD, and so many siblings with FASD. I also heard from
so many people about the obstacles health professionals were experiencing
in preventing this handicap.
Dr. Alain Fourmaintraux, the pediatrician at Saint-Pierre Hospital;
Dr. Jean-François Lesure, the pediatrician at Saint-Denis
Children‘s Hospital; and I decided to study the incidence
of FASD for the year of 1996. The results were published in Teratology
(August 1999), and confirmed a high rate of FAS in Reunion Island—at
least 4.5 per thousand. This is almost the same rate as in Northern
France and in Normandy. The results also showed that 5 percent of
the mothers had a drinking habit that placed their baby at risk;
these mothers consumed 21 or more drinks over a week period, or
engaged in binge drinking of five or more drinks on an occasion
(a drink being a pint of ordinary strength beer, lager, wine or
rum). We suspect that more than 2 percent of the children on Reunion
Island are affected by FASD.
With Dr. Denis Lamblin, we decided first to follow those children
having a risk of being damaged during pregnancy and to think about
prevention. Dr. Lamblin is a pediatrician (I’m a general practitioner
now) and is the director of a center for children with disabilities
(Centre d’Actions Medico Sociales Precoces). He knew those
at-risk infants well because at least 10 percent of the children
from his center had FASD and he recognized their facial features
We organized a study to follow the children. This study is nearly
ready to be published, after following them for seven years. We
also, for three years, organized meetings with diverse professionals
from health and education fields, to justice and social workers.
Unfortunately, we observed that each year had the same prevalence
of FASD. Most of the time, professionals had difficulties not only
working with mothers, but also working together. We decided to built
a network to support them and to be sure that mothers and children
had continuous care. REUNISAF (Réseau de Prévention
du Syndrome d’Alcoolisation Fœtale), the first French
network to prevent FASD, was born in 2001.
In the next issue, I will explain what our team has accomplished
and our goals for the future.
*Reunion Island is a state of France off the coast of Madagascar.