A tapestry of memories and connections
(Ein Flechtwerk von Erinnerungen und Verbindungen)
A tapestry of memories and connections
Dr. Hermann Löser’s story
Dr. Hermann Löser joined the Parents Initiative of Alcohol
Injured Children shortly after its founding. Through their own experience
and research, the group discovered new insights and refined their
knowledge, and Dr. Löser often wrote these findings. One of
his books: "Alkoholembryopathie und Alkoholeffekte" is
still available for purchase in Germany.
Ann Gibson and Dr. Löser started working together in 1999.
The first year they organized a symposium in Kiel and Dr. Löser
allowed Ann to use all of his pictures and published articles. He
participated in other FASD symposiums in Berlin as well, even though
he was having health problems. In 2000, Ann wrote to her FASD mailing
list the following about Dr. Löser: "He is a very, very
kind person, and he is with heart and soul for our kids."
His professional career was quite successful. He studied at different
universities and made great strides in FASD research. One day Dr.
Löser asked Dr. Reinhold Feldmann, also of the University of
Münster, to continue his work and then retired for health reasons.
He then spent time traveling with his wife and singing in several
choirs. Children with FASD were always close to his heart.
Beate vom Knappen remembers Dr. Löser
Twenty-two years ago, someone laid a foster child in my arms. In
spite of every sense of pleasure, I noticed that there was something
wrong with the child. Only six months later I found out that my
child has "Alkoholembryopathie" (an older German term
for FASD), but nobody told me what that really meant. Two years
later I met Dr. Hermann Löser of the University of Münster.
He was the only man who could define "Alkoholembryopathie".
Later, Helga Thater and I founded "Elterninitiative Alkoholgeschädigter
Kinder e.V. (Parents Initiative of Alcohol Injured Children)”
in 1985, which grew in membership. We were the first "advisors"
for parents of children with FASD in Germany, and hundreds of parents,
(foster, adoptive and biological) consulted with them and were helped
by our expertise. Using public relations, we were featured in many
top magazines and TV programs so that we could show Germany that
alcohol during pregnancy damages the child. In August 2002, I joined
a new mailing list started by Ann Gibson.
Ann Gibson's story
When Sinja, Ann’s foster daughter with FASD, was a baby,
Ann knew she needed help. She wanted to talk to someone about Sinja
and so she called some people who were knowledgeable about FASD,
but they only told her she had to come to their monthly meeting,
which was far away. So she cried alone.
she found a little booklet about FASD by Prof. H. Löser, Beate
vom Knappen and Helga Thater. This little booklet, she said, was
her bible for understanding her child. Later she got a computer
and Internet access and discovered FASlink. She felt at home because
many people were dealing with the same problems. So, Ann designed
a homepage and later founded a German FASD listserv in February
2000. She wanted to give parents the opportunity to talk to each
other – not only about FASD, but about their other worries
and joys, as well. This has led to a greater pool of people to work
toward FASD awareness in Germany. For two years now, they have also
organized a weekend family camp.
In February of 1999, a small group of burned-out parents set out
to change the world by founding FASworld. The three co-founders
were Teresa Kellerman, Brian Philcox, and Bonnie Buxton and one
of the first volunteers was Ann Gibson. Within 24 hours she picked
up the ball and ran with it, not just in Germany but also by making
contacts all across continental Europe. On the first FAS Day, Ann
spearheaded events in three German cities and she recruited the
help of her daughters, her friends, and the best FAS medical experts
in Germany, too!
Sigrid Reinhardt remembers Ann
In November 2001, when our adopted daughter was 16, I joined Ann’s
mailing list. After reading an article by Bonnie Buxton in the German
edition of Reader’s Digest, I figured our daughter's troubles
might have been caused by alcohol in pregnancy and asked many doctors
about this, but NO ONE knew anything. We looked to the Internet
to find out more, as the troubles with our pubescent daughter were
worsening. I only found two Web sites about FASD in Germany, one
of which was the site by Ann Gibson.
When I joined the mailing list, I was burned out and full of self-blame
because I didn't understand why all my efforts to educate our daughter,
to help her manage the simplest daily things, and to help her manage
her friendships and social life were having no effect. Without the
help of Ann and the other members of the mailing list, I would have
been destroyed forever (and those are not hollow words). Dr. Feldmann,
Prof. Löser’s successor, diagnosed our daughter with
ARND this year.
Ann taught me to understand that children with FASD are strenuous
and not easy to raise, but that is not why I’m in her debt.
She also showed me her love for Sinja. Ann taught us to look at
the good things our children can do.
I loved Ann and was so thankful that I decided to help her. I began
to learn more about FASD. In these short three years, I found my
mentor and teacher; I found the friend I never had; I found the
sister in love. I also found the courage to educate people about
Members of FASworld Europe reflect on Ann’s passing
It was so horrible for us knowing that Ann was dying. We were in
Berlin for our FASday Symposium, which had to continue. It was Ann’s
wish to have the European groups unite in a European organization
named FAS Europe. Her dream came true. When the symposium came to
an end on September 18th, the representatives of many European countries
withdrew to found FAS Europe. Alan, her husband, gave this news
to Ann on her deathbed.
Ann was diagnosed with lung cancer less than a month before she
died, and was undergoing chemotherapy. She had a pulmonary embolism
and died three days later, after saying her good-byes.
We were overwhelmed by everyone’s reaction to her death.
Hundred of emails reached us, full of sorrow and mourning, but also
hopeful and full of love. One person asked, “Where can we
send money?” When Ann was with us, we started a children’s
fund to help our kids immediately. There was not much money in this
fund, but after Ann’s death the idea of a foundation came
up. We changed the fund to the “Ann Gibson Foundation,”
and we are still astonished by the amount of money supporters have
sent. The world agreed to come closer, to help, and to continue
Ann’s legacy. People who knew her only a short time were touched
by her personality. Ann was a great person with a wonderful family
and was always full of love.
Excerpts from emails sent to her family for a “Tribute to
- I miss Ann. She was my confidante and was always there for
me in the long FASD struggle and journey. Ann used to pick me
up when I was down and gave me the strength and support to keep
going. You could share anything with her and know it was safe.
- We will all miss Ann, and miss her sweet smiling posts, her
earnestness and desire to get the word out, and to love these
kids with all of our hearts. To help them and be there for them,
and to teach the world about them.
- You taught us, with your sensibility and experience, that we
shouldn’t look for blame or the guilty party... And often
I laughed loud about your great humor. Oh, Goodness! You look
like a gentility English Lady, but you have been so full of life.
It was a pleasure working with you.
- I will miss 'talking' with her via the net. I will miss hearing
about FASWORLD in Germany, her beloved children & cherished
grandchildren, Sinja's successes...she 'shared' it all with us
because we 'also' were family to her...as she was to each of us!
- Most people go through life not knowing what their purpose is.
Ann found her purpose and what she started will continue to spread
as the ripples on a pond. We have been profoundly blessed to know
her on FASlink and to have become part of her family. Her legacy
touches us all.
- She reminded me somewhat of the late Princess Diana in both
appearance and her ability to touch others. She also had a wonderful
sense of humour, and seemed not to take herself terribly seriously...
True angels are among us, every day of our lives, and we often
fail to recognize it. Ann was one of these angels -- she truly
did change the world by her actions, by her goodness, kindness,
and love. These parts of Ann can never die.
Ann included the following signature with all emails she sent:
Life is not a journey to the grave with the
intention of arriving safely in a pretty and well preserved body,
but rather to skid in on your backside thoroughly used up, totally
worn out and proclaiming loudly: "Wow, what a ride!"
Ein Flechtwerk von Erinnerungen und Verbindungen
Prof. Dr. Hermann Lösers Geschichte:
Dr. Löser kam zur „Elterninitiative Alkoholgeschädigter
Kinder“, kurz nachdem sie gegründet wurde. Durch eigene
Erfahrungen wurden neue Erkenntnisse geschaffen, die Dr. Löser
häufig und erfolgreich veröffentlichte. Damit erreichte
er einen großen Schritt in Richtung Forschung. Eines seiner
Bücher: „Alkoholembryopathie und Alkoholeffekte“
ist noch im Buchhandel erhältlich.
Ann Gibson und Dr. Löser arbeiteten seit 1999 zusammen. Im
ersten Jahr organisierten sie ein Symposium in Kiel. Dr. Löser
erlaubte Ann, alle Bilder und veröffentlichten Artikel zu verwenden.
Er nahm, trotz seiner gesundheitlichen Probleme, an anderen FASD-Symposien
in Berlin teil. Im Jahr 2000 schrieb Ann in der FASAE-Mailingliste
folgendes über Dr. Löser: „Er ist eine sehr, sehr
freundliche Person und er ist mit Herz und Seele dabei für
Seine berufliche Karriere war ebenfalls erfolgreich. Er studierte
an verschiedenen Universitäten und bewirkte große Fortschritte
in der FASD-Forschung. Eines Tages fragte Dr. Löser Herrn Dr.
Reinhold Feldmann, gleichfalls Universität Münster, ob
er seine Arbeit für FASD fortsetzen wolle, da er aus gesundheitlichen
Gründen in den Ruhestand gehen musste. In der anschließenden
Zeit erfüllte er sich seinen Traum und ging mit seiner Frau
auf Reisen, außerdem sang er auch in verschiedenen Chören.
Kinder mit FASD lagen ihm immer sehr am Herzen.
Beate vom Knappen erinnert sich an Dr. Löser:
Vor 22 Jahren bekam ich ein Pflegekind in die Arme gelegt. Trotz
aller Freude bemerkte ich, dass etwas mit diesem Kind nicht stimmte.
Erst ein halbes Jahr später erfuhr ich, dass mein Kind „Alkoholembryopathie“
habe (alter medizinischer Ausdruck für das fetale Alkoholsyndrom).
Aber was das bedeutet, erzählte mir niemand.
Dann traf ich vor ca. 20 Jahren auf Prof. Dr. Hermann Löser.
Er war der einzige Mensch, der das Wort „Alkoholembryopathie“
mit Inhalt füllte.
Später (1985) gründeten Helga Thater und ich die „Elterninitiative
Alkoholgeschädigter Kinder e.V.“. Schnell wurden wir
in ganz Deutschland bekannt und hatten viele Mitglieder bekommen.
Wir waren die ersten Berater für Eltern von Kindern mit FASD
in Deutschland und Hunderte von ratsuchenden Pflege-, Adoptiv- und
auch leiblichen Eltern meldeten sich, denen wir durch unsere Sachkenntnis
Indem wir neue Medien nutzten, waren wir in der Lage, in großen
Top-Magazinen und TV-Sendungen innerhalb Deutschlands bekannt zu
machen, dass Alkohol in der Schwangerschaft Kinder dauerhaft schädigt.
Im August 2002 kam ich zu der FAS/AE - Mailingliste, die Ann Gibson
Ann Gibsons Story:
Als Sinja, Anns Pflegetochter mit FASD, noch ein Baby war, wusste
Ann, dass sie Hilfe brauchte. Sie wollte einfach nur über Sinja
reden und rief Menschen an, die Kenntnisse über FASD hatten,
aber diese sagten ihr nur, dass sie einmal monatlich zu ihren Treffen
kommen solle, die weit entfernt stattfanden, was für Ann nicht
durchführbar war. Nach diesem Telefonat weinte sie sehr. Sie
fühlte sich allein gelassen.
Dann fand Ann ein Buch über FASD von Dr. Löser, Beate
vom Knappen und Helga Thater. Dieses kleine Buch, so sagte sie,
wurde ihre Bibel, um ihr Kind zu verstehen. Später bekam sie
einen Computer, einen Internetanschluss und entdeckte FASlink. Sie
fühlte sich gleich wie zu Hause, weil viele Menschen dort die
gleichen Probleme hatten wie sie. Ann gestaltete eine Homepage und
gründete später, im Februar 2000, eine deutsche FASD-Mailingliste.
Sie wollte den Eltern die Gelegenheit bieten, sich auszutauschen
- nicht nur über FASD, sondern auch über die eigenen Sorgen
und Nöte und auch Freuden. Seit zwei Jahren organisierte sie
jährlich ein Wochenendtreffen mit FAS-Familien.
Im Februar 1999 entschloss sich eine kleine Gruppe ausgebrannter
und gebeutelter Eltern, die Welt zu verändern und FASworld
zu gründen. Die drei Gründer waren Teresa Kellermann,
Brian Philcox und Bonnie Buxton. Die erste Mitstreiterin war Ann
Gibson. Innerhalb von 24 Stunden griff sie diese Idee auf und stürmte
voran - nicht nur in Deutschland, sondern sie knüpfte Kontakte
kreuz und quer durch Europa. Zum ersten FAS-Tag, dem 9.9.1999, organisierte
Ann Veranstaltungen und Infotische in drei deutschen Städten
mit der Hilfe ihrer Töchter und ihrer Freunde und auch mit
den besten medizinischen FAS-Experten in Deutschland.
Sigrid Reinhardt erinnert sich an Ann Gibson:
Im November 2001, als unsere Adoptivtochter 16 Jahre alt war,
kam ich zu Anns Mailingliste. Nachdem ich den Artikel von Bonnie
Buxton in der deutschen Ausgabe des Reader's Digest gelesen hatte,
begriff ich, dass die Probleme unserer Tochter durch Alkohol in
der Schwangerschaft verursacht worden waren. Ich hatte mit vielen
Ärzten darüber gesprochen, aber NIEMAND wusste IRGEND
ETWAS darüber. Wir suchten nach mehr Informationen im Internet,
als die Probleme mit unserer Tochter immer schlimmer wurden. Ich
fand nur zwei Homepages über FASD in Deutschland, eine von
ihnen war die Seite von Ann Gibson.
Als ich nun in diese Mailingliste kam, war ich ausgebrannt und
voller Selbstvorwürfe und Schuldgefühle, weil ich nicht
verstand, warum meine ganzen Bemühungen, meine Tochter zu erziehen,
ihr zu helfen, die einfachsten Dinge des täglichen Lebens zu
bewältigen, ihre Freundschaften zu pflegen und ihr Sozialleben
zu ordnen, keine Auswirkung, keinen Effekt hatten.
Ohne die Hilfe von Ann und den anderen Mitgliedern der Mailingliste
wäre unsere Familie für immer untergegangen. (Das sind
keine leeren Worte.) Dr. Feldmann, Dr. Lösers Nachfolger, diagnostizierte
bei unserer Tochter dieses Jahr ARND.
Ann lehrte mich zu verstehen, dass die Kinder mit FASD zwar anstrengend
sind und es auch nicht einfach ist, sie großzuziehen, aber
das ist nicht das, warum ich in ihrer Schuld stehe. Sie zeigte mir
ihre Liebe zu Sinja, Ann lehrte uns, die positiven Seiten und die
Fähigkeiten der Kinder zu sehen.
Ich begann Ann zu schätzen und zu lieben und war ihr so dankbar,
dass ich mich entschloss, ihr zu helfen. Ich begann, mehr über
FASD zu lernen. In diesen kurzen drei Jahren fand ich meinen Mentor
und Lehrer; ich fand die Freundin, die ich nie hatte; sie war mir
wie eine Schwester. Ich fand auch den Mut, Menschen über FASD
Mitglieder von FASworld Europa reden über Anns Scheiden:
Es war so furchtbar für uns zu wissen, dass Ann im Sterben
lag. Wir waren in Berlin wegen des Symposiums zum 6. FAS-Tag, und
dieses musste ja weitergeführt werden. Am 18. September 2004
wurde Ann Gibsons Traum Realität. FAS-Europe, ein Zusammenschluss
der europäischen FASworld Gruppen, wurde im Anschluss an das
dritte FAS-Symposium in Berlin gegründet. Diese Nachricht teilte
ihr Ehemann Alan ihr noch am Sterbebett mit.
Ann bekam die Diagnose Lungenkrebs nur sechs Wochen bevor sie
nach der ersten Chemotherapie starb. Sie hatte Lungenembolien und
starb drei Tage nach ihrem Abschied von ihren Angehörigen.
Wir waren überrascht von den Reaktionen aus aller Welt über
Anns Tod. Hunderte von E-mails erreichten uns voll von Trauer und
Wehklagen, aber auch voller Hoffnung und voller Liebe. Jemand fragte:
„Wohin können wir Geld schicken?“ Noch zu Anns
Lebzeiten hatten wir in diesem Jahr einen FAS-Kinder-Fonds eingerichtet,
um Kindern sofort helfen zu können. Es war nicht viel Geld
in diesem Fonds und nach Anns Tod wurde die Idee geboren, eine Stiftung
zu gründen. Wir widmeten den Fonds in die „Ann Gibson
Stiftung“ um und sind sehr erstaunt über die Menge der
Spenden, die von FASworld-Mitgliedern geschickt wurden. Die Welt
beschloss, enger zusammen zu rücken, zu helfen und Anns Vermächtnis
weiterzuführen. Menschen, die sie nur eine kurze Zeit kannten,
waren berührt von ihrer Persönlichkeit. Ann war eine großartige
Person voller Liebe und mit einer wunderbaren Familie.
Auszüge aus E-Mails, die für ein Kondolenzbuch an die
Familie gesendet wurden:
- Ich vermisse Ann. Sie war meine Vertraute und war immer für
mich da auf meinem langen und harten FASD-Weg. Ann richtete mich
auf wenn ich niedergeschlagen war... Du konntest alles mit ihr
teilen und wusstest, es war sicher bei ihr aufgehoben.
- Wir vermissen Ann alle sehr und vermissen ihre verschmitzten
Briefe, ihre Gewissenhaftigkeit und ihr Streben bei der Aufklärung
(über FASD) und Hilfe, Liebe aus vollem Herzen zu diesen
Kindern zu empfinden. Ihnen zu helfen und für die da zu sein,
der Welt über sie zu berichten.
- Du lehrtest uns mit deiner Sensibilität und Sachkenntnis,
nicht Vorwurf und Schuld zu suchen... Und oft lachte ich laut
über deinen großen Humor. Oh, du meine Güte, du
siehst aus wie eine vornehme englische Lady, aber du warst so
voller Leben. Es war ein Vergnügen, mit dir zusammen zu arbeiten.
- Mich mit ihr übers Internet zu „unterhalten“,
werde ich sehr vermissen. Ich werde es vermissen, etwas über
FASworld Deutschland zu hören, ihre geliebten Kinder und
Enkelkinder, Sinjas Fortschritte... Sie teilte sie alle mit uns
weil wir auch ein Teil der Familie von ihr sind... so wie sie
es für uns alle war!
- Viele Menschen wandern ziellos umher, ohne zu wissen, was der
Sinn ihres Lebens ist. Ann hat ihren Sinn in dieser Welt verstanden
und was sie in Bewegung gesetzt hat, hat und wird weiter Wellen
schlagen. Wir sind zutiefst geehrt, dass wir Ann über FASlink
kennen durften und zu einem Teil ihrer Familie wurden. Ihr Vermächtnis
rührt uns alle.
- Sie erinnerte mich ein bisschen an Prinzessin Diana in ihrer
letzten Zeit, in beidem: Erscheinung und in ihrer Fähigkeit,
andere Menschen zu berühren. Sie hat auch einen wundervollen
Sinn für Humor und es scheint, als würde sie sich selbst
nicht so fürchterlich ernst nehmen. ... Wahre Engel sind
unter uns jeden Tag in unserem Leben und oft erkennen wir sie
nicht. Ann war einer von diesen Engeln - sie veränderte wirklich
die Welt durch ihre Aktivität, ihre Güte, Freundlichkeit
und Liebe. Dieser Teil von Ann kann niemals sterben.
Ann fügte seit Februar 2004 folgende Signatur unter ihre Emails:
Das Leben ist keine Reise zum Grab mit dem
Ziel, sicher, schön und gesund anzukommen, sondern vielmehr
eine aufregende Fahrt mit der Achterbahn, um erschöpft und
laut rufend einzutreffen mit den Worten: "Wow, what a ride!"
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An adult reflects on his life with
My name is Rob. I am 31 years old. I was diagnosed with Fetal Alcohol Syndrome
at birth and adopted by my parents when I was 11 months old.
Living with FAS has been difficult at times
Special challenges for me in school were:
Writing – I could not think and write at the same time,
I could not listen and write at the same time
Writing took my total concentration
Essay questions took too much effort, too much writing. I could do better talking
into a tape recorder.
Listening to lectures – I needed to tape record lectures, as I could not take notes
Middle School was especially hard because my locker was way over by the gym
and my classes were on the other side of school. I had to carry everything I
needed for the whole day in my backpack.
My schedule was changed completely, three times in the first four days of
school My parents had tried to help me learn my schedule before school started
and we walked through it several times. With all the changes, the practice did
There were two things that I remember helped me.
In high school one teacher would always write down, when we had a test,
assignments in red on the chalkboard, The quizes would be in blue and the
homework was in white.
I also was allowed to have one textbook at school and one that I could take
home and write in and highlight important things
I think this Chinese Proverb explains how I learn. I found it when I was in seventh grade
And showed it to my mother. It is still true.
Tell me, I will forget
Show me, I may remember
Involve me, I will understand
I think this proverb also influenced my choice of classes and jobs
In my senior year of high school, I took a culinary arts class.
I was so involved in the class that, at the end of the year I got the outstanding senior
of the year award.
One job I had was working in a restaurant for four years. I had two bosses but
unfortunately they both quit at the same time. So I called voc. rehab to help me
explain my disability to my new boss. However because I had been successful in my
job, my case was closed. By the time my case was reopened, I had lost my job.
One recent job I had was difficult for me because my boss didn’t understand my
disability, she also didn’t seem to want to work with the job coach, it also seemed
impossible for the job coach to make any sort of contact with her when there
was a problem
Three years ago my parents and I moved from the home I had lived in for 28
years. The reason was that my parents are getting older and there are no group
homes for people with an average IQ. I need help with organization, paying bills,
keeping a home clean and keeping myself safe. I need some kind of supervised
independent living but it doesn’t exist. My sister and brother-in law said that
they would be there to support me when my parents passed away. I was very
reluctant and stubborn when it came time to move. Now I am more used to it.
If I were applying for a job today these are some things I would want a new boss
to know about me
I can be easily distracted
I have trouble remembering verbal instructions
It helps if things are written down
I also have trouble remembering several tasks or a task with several parts
Sometimes I try to do too many things at once and find myself not finishing what
I sometimes have trouble pacing my work
It helps if I can work along side someone or if someone can share the work
My strengths are
I am very reliable, dependable and punctual
I am creative
I am always willing to help others
I have learned to cope with my disability, but I don’t want you to be at peace
with FAS. I need you to make changes to help, children and teens as well
as other adults. These are some of the things I want you to try and change
I would like everyone to understand FAS / FAE /FASD
I would like every child to be able to get a diagnosis early, like I did
I would like for teachers to know of ways to help students like me
Ask the student what would help him.
I would like for employers to understand what might make the job easier for
people with FAS / FAE
Some of the ways I have been helping spread the message about FAS is thru
my bumper stickers, the Video – Students Like Me, teaching people with
FASDs what to do if they are stopped by the police and talking to people like you.
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FASD Center for Excellence trains thousands
A major challenge in addressing fetal alcohol spectrum disorders
(FASD) is educating people. Since 2001, the Substance Abuse and
Mental Health Services Administration’s FASD Center for Excellence
in Rockville, Maryland, has trained about 8,500 individuals to further
FASD education. Training participants include professionals, family
members and caregivers. The center tailors all trainings to the
needs of the audience, but some topics are commonly presented, such
- FASD 101
- Loss and grieving
- Criminal justice
- Co-occurring disorders and misdiagnosis
- FASD in families
The FASD Center is required by law to provide training and technical
assistance. The mandate includes families, providers, systems of
care, communities, tribes and states. To meet this mandate, center
staff members have traveled around the country and beyond. They
have held training sessions in nearly 30 states and the District
of Columbia, as well as in Canada, Japan and England.
FASD Center staff members also lead workshops and give presentations
at various regional, state and international conferences. In addition,
center staff members assist programs to improve FASD services. Finally,
center staff members help communities and states develop plans to
address FASD prevention and treatment.
The center accepts requests for training and technical assistance
through its Web site (fasdcenter.samhsa.gov)
and Information Resource Center (866-STOPFAS). Center staff members
contact requesters as needed to clarify information, and then decide
whether the center can meet the request or must refer people elsewhere.
Unfortunately, while the center tries to meet as many requests
as possible, the training budget is limited and every request cannot
be filled. If the center can fill the request, the staff members
will work out the details, provide training or send field trainers,
and follow up.
Thus far, the center has received excellent feedback on its training
sessions. Many people have increased their knowledge and interest
in FASD prevention and treatment. However, many more still need
training. The center will continue to fill this need by providing
training and technical assistance, and by following up to determine
what people need to improve FASD services in their communities.
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Group therapy for youth with FASD
Last year I ran a therapy group for young adult males with FASD
in my Calgary community psychiatric consultation office. The group
was held once a month from September 2003 to June 2004, and lasted
up to an hour and a half.
The group had eight participants who ranged in age from 19 years
to 26 years. They had all been part of the consultation practice
after being referred for psychiatric consultation and management
by their primary physician or developmental pediatrician. The group
consisted of two Caucasians, three Native Americans (or First Nations)
and three Metis (Native American and Caucasian). One patient had
been diagnosed with FAS at birth, two patients had Partial FASD
(PFAS) and five had Alcohol Related Neurodevelopmental Disorders.
None of these young men displayed any characteristic FAS dysmorphic
features; however, two patients had a co-morbid seizure disorder
and were also being seen by a neurologist. Five of the young men
with FASD still lived with their parents and the remaining lived
in Supported Independent Living (SIL) situations. The group participants
came from a wide geographic area: three from the eastern part of
British Columbia and five from the southern half of Alberta.
The group therapy approach succeeded at many diverse levels, but
mostly it offered a safe place for these young adults with FASD
to share their common stories and to experience positive collective
problem solving with peers. It really became a true “self-help”
group, and gave each participant a chance to discuss his fears,
seemingly silly ideas and pet rages in a protective environment.
Primarily, all the patients felt a shared comradeship and spoke
frequently how others “don't get it.” Their collective
experiences in the teenage and early adult years commonly paralleled
each other. They shared these experiences naturally as each session
developed its own theme. One time the group spoke of the frustration
of finding suitable jobs, and how employers' often thought they
were dumb or “retarded.” Another group discussed parenthood
and how to keep the connection with birth children. This session
developed into a fascinating discussion on the pros and cons of
adoption among a group of seven adoptees! Finally, a further group
discussed the problems of relationships with young women.
There were teething problems.
Some group participants came on the right day but the wrong week.
One young man worked 12-hour shifts and so often had work conflicts
on a session night or was too exhausted after a work shift to attend.
One young man became a bit upset hearing the problems of other people
and left the group to return to individual therapy. One or two of
the group members processed information at a slower rate, but inevitably
(after 30 minutes or so) caught up with the group's theme for the
day. A number of parents suggested that it would have been good
to offer a parallel parent group.
Overall, I found that the modality of group therapy seemed to be
a useful addition to the management regime of young adults with
Currently, I am three months involved in running a young adult
group for women, and they are quite a different “kettle of
fish!” Hopefully, I can report next year on the challenges
and strengths of group therapy for young women who have FASD.
return to top
Mother to 13 children
Mother to 13 children……50 years old……traveling
and speaking around the country. Fifteen years ago, if anyone had
even suggested that this would be my future I would have told them
they were out of their ever-lovin’ mind. But that is exactly
who I am and what I do currently.
In 1987, after dating for five years, I married my husband Lynn.
This union blended our two families of three children each, giving
us a family of six children. In 1990, we moved from Minnesota to
Washington state, where I became a house parent in a shelter for
teenagers. In 1991, we became licensed foster parents to two teenage
brothers with the disillusioned belief that since we had pretty
successfully raised our own six children we could do this also.
We believed that all you had to do was love them enough and provide
them with all the opportunities that had been denied them in the
past; then these children would be eternally grateful and grow up
to be upstanding citizens and contributing members to society. Man,
were we naïve.
Within two years our home had burned to the ground, I was being
called to the school on an almost daily basis to intervene on behalf
of the boys, my marriage was on the rocks, and my three biological
daughters were threatening to run away. Nothing had prepared us
for the challenges of raising two young men with histories of severe
physical abuse, from a totally different culture than ours, with
learning disabilities and developmental delays….and no one
had even thought of the effects of prenatal alcohol exposure. I
was feeling like the most helpless, hopeless and ineffectual parent
alive. But at that point my daughter, Jessica, brought home a packet
of information from her high school about FASD, and so began our
journey of education, diagnosis, appropriate interventions and advocacy.
That was truly the turning point in our lives. It offered us the
reality of the reframing process and we went from seeing these boys
as being willfully disobedient to being disabled. We finally understood
that it wasn't that they wouldn’t do things but rather that
they couldn’t do them.
In 1993, our biological children were mostly on their own so we
started to add more foster children to our family. Over the course
of the last 13 years we have fostered a total of 22 children with
the joyful result of adopting four of them and having permanent
guardianship of three others. It is those seven children who are
currently in our home and who bring our legal total of children
to thirteen. My stepchildren are Kelly, 37, Tari – deceased
at 20 years old, but she would be 36 now – and Dan, who is
33. My biological daughters are Faith, 32, Jessica, 29, and Briana,
26. They have given us nine grandchildren so far. The six siblings
and half-siblings have all openly and lovingly welcomed into their
ranks their four adopted siblings, Michael,15, and his half-sister
Tessa, who is 12. Then we have also adopted Brandan, 9, and his
first cousin, Cayenne, 5. The three brothers that we have in guardianship
are Theadore, 20, who is in guardianship as an incapacitated adult,
and Ricky, 13, and Nickolas, 9. All seven of these children have
been diagnosed with FASD or another related disorder.
It was never our intent to do anything other than foster care –
you know, the current and legal definition of “short-termed,
goal oriented, temporary care.” And here I am at 50 (and my
husband is 60) parenting children who will all need some kind of
“cradle to grave” service. But neither my husband nor
I can imagine our lives differently.
These last 13 years have been the most challenging, frustrating,
difficult, painful, discouraging, heartbreaking, heart wrenching
years of my life. Not because of the children, but rather from the
interactions with the systems of care and agencies whose lives my
children touch. Our children have given us more joy, patience, laughter,
healing, blessings, goals, education, understanding, learning opportunities,
challenges for our personal growth and unconditional love than we
have ever experienced in our lives. Out of need and necessity I
have learned about Special Education, the IDEA, the ADA and 504
accommodation plans, adoption support, and the state laws around
foster care and adoption. I have also learned about tribal governments,
the Indian Child Welfare Act, Special Olympics, the Multi-Ethnic
Placement Act, cultural sensitivity and relevancy, grief and loss,
the essential connections of human beings, and the importance of
self-esteem. My children have taught me about modifications of the
environment, natural and logical consequences, reflective listening,
I-messages, social communication, sensory integration, and effective
questioning, and less about time-outs. I have learned about termination
of parental rights, open adoption, and the court process. I have
seen the possibilities of birth families and adoptive families working
together for the children, and the blending and merging of those
two units when safe and appropriate. We have experienced the death
of birth parents and the subsequent questions of the children, and
the grief and loss that go with this life process. They also gave
me the awareness, understanding and courage to face the reality
that my alcoholism may have affected my own birth daughter. I was
able to approach Faith and ask her if she was interested in being
evaluated at the local diagnostic clinic because I was a very heavy
binge drinker during my pregnancy with her. Faith was diagnosed
at the age of 25 with FASD, and I had to accept the truth of being
a birth mom as well as a foster/adoptive mom of children with FASD.
And I have formed a career. I have been the Family Advocate at
the University of Washington for the Washington State Fetal Alcohol
Syndrome Diagnostic and Prevention Network for nearly nine years.
I train many disciplines of people throughout the United States
and Canada on the subjects of FASD, effective advocacy and self
care. I have been given the opportunity to be part of the lives
of these wonderful children who are upstanding citizens and contributing
members to society, and who fill my live with such joy. How can
life be any better than to be the mom of a child like Brandan, who
says on a daily basis things like, “You’re beautiful,”
to me, or, “This is just the most beautiful day?”
Because of these gifts of my children I am eternally grateful for
the reality of my life.