November 2004

• A tapestry of memories and connections
• An adult reflects on his life with FASD
• FASD Center for Excellence trains thousands
• Group therapy for youth with FASD
• Mother to 13 children

A tapestry of memories and connections (Ein Flechtwerk von Erinnerungen und Verbindungen)

• Edited in English
• Translated into German

A tapestry of memories and connections

edited by Katy Jo Fox

This September marked the passing of two wonderful people who devoted their lives to FASD research and helped parents to connect and become FASD advocates. Ann Gibson, born in England and transplanted to Germany, passed away September 19th, at age 49. Professor. Dr. Hermann Löser of Germany died a few days later on September 25th, at age 63.

I was privileged to meet Dr. Löser at the International FAS conference in Seattle in September 1996. I will never forget how he asked for my opinion about the latest research and was interested in what I had to say. I was a 19-year-old with a dream of going to Europe and working on FASD prevention, and here I was, with the ear of a doctor in Germany! He described how the mental light bulb first illuminated the role prenatal alcohol played in the lives of his young patients in the early 1970s. He told me of his trials and successes.

He told me of his hopes for a future when the breweries would realize the dangers of drinking during pregnancy and take action; a future when parents of children with FASD could get together and support each other in a positive manner; a future when Germany knew what FASD was. We continued to correspond over the years. He is survived by his wife and three daughters.

In 1998, Ann Gibson joined FASlink (an online FASD listserv) and I made a new friend. We chatted back and forth, sometimes in English and sometimes in German. One day she told me she had met Dr. Löser and that they had talked about me. It was so special to be included. She continued to encourage me in my dreams of working in Europe. Time went on, and as with Herr Löser, life got busy. Our letters slowed, but the memories and closeness continued. Ann is survived by her husband and seven children (Her daughter Sinja was featured in Sit and Watch, March 2003).

As both Dr. Löser and Ann Gibson were fans of Iceberg, it is fitting to feature their stories in this issue. With the help of Gisela Michalowski, Irm Wills, Beate vom Knappen, Dr. Reinhold Feldmann, and Sigrid Reinhardt, we have pieced together a fitting tribute to these two courageous people. We will miss their friendship.

-- Katy Jo Fox, Iceberg board member

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.

Then 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 FASD.

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 Ann” scrapbook:

• 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 (German translation)

bearbeitet von Katy Jo Fox

Der September war gekennzeichnet vom Verlust zweier wunderbarer Menschen, die ihr Leben der FASD-Forschung und der Aufklärung der Eltern darüber widmeten und Fürsprecher für Menschen mit FASD wurden. Ann Gibson, geboren in England (verzogen nach Deutschland), verließ uns am 19. September im Alter von 49 Jahren. Professor Dr. Hermann Löser aus Deutschland starb einige Tage später, am 25. September, im Alter von 63 Jahren.

Ich war in der glücklichen Lage, bei der internationalen FAS-Konferenz in Seattle im September 1996 Dr. Löser kennen zu lernen. Ich werde nie vergessen, wie er mich nach meiner Meinung über die neuesten Forschungen fragte und dass er so daran interessiert war, was ich zu sagen hatte. Ich war 19 Jahre alt und hatte den Traum, nach Europa zu gehen, in der FASD-Prävention zu arbeiten - und da stand ich, mit der vollen Aufmerksamkeit eines Arztes aus Deutschland! Er erzählte mir, wie er in den frühen 70er Jahren durch einen Geistesblitz die Rolle, die der Alkohol in dem Leben seiner jungen Patienten spielte, erkannt hatte. Er erzählte mir von seinen Versuchen und Erfolgen, von seinen Hoffnungen für die fernere Zukunft, wenn die Brauereien die Gefahr von Alkohol in der Schwangerschaft erkennen und darauf reagieren würden; eine Zukunft, in der Eltern von Kindern mit FASD sich begegnen können und sich gegenseitig auf positive Art und Weise unterstützen; eine Zukunft, in der Deutschland weiß, was FASD ist. Wir führten eine rege Korrespondenz über Jahre hinweg. Dr. Löser hinterlässt seine Frau und drei Töchter.

1998 kam Ann Gibson zu FASlink (einer online FASD Mailingliste) und wurde mir eine neue Freundin. Wir mailten hin und her, manchmal auf Englisch, manchmal auf Deutsch. Eines Tages sagte sie mir, dass sie Dr. Löser getroffen hatte und sie über mich gesprochen hatten. Es war für mich etwas Besonderes, einbezogen worden zu sein. Sie ermutigte mich immer wieder, meinen Traum davon, in Europa zu arbeiten, zu realisieren. Die Zeit verging und das Leben wurde arbeitsintensiver und wie schon bei Herrn Löser wurden die Briefe zwischen Ann und mir immer seltener, aber die Erinnerungen und die Nähe blieben. Ann hinterlässt ihren Ehemann und sieben Kinder. (Ihre Tochter Sinja wurde im März 2003 in Sit and Watch' vorgestellt.)

Weil beide, Dr. Löser und Ann Gibson, die Zeitschrift Iceberg sehr geschätzt haben, finde ich es passend, ihre Geschichte hier in dieser Ausgabe vorzustellen. Mit der Hilfe von Gisela Michalowski, Irm Wills, Beate vom Knappen, Dr. Reinhold Feldmann und Sigrid Reinhardt gestalteten wir ein Flechtwerk von Erinnerungen, das diesen beiden couragierten Menschen gerecht wird. Wir werden ihre Freundschaft vermissen.

--- Katy Jo Fox, Iceberg (Board Member)

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 unsere Kinder.“

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 helfen konnten.

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 gegründet hatte.

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 aufzuklären.

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 FASD

This speech was given by Rob Wybrecht at the FASD Building State Systems meeting this May in Florida (could link to article here). He currently resides in Michigan.

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:
         Math - 
         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 
         not help.
		 
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 start
I sometimes have trouble pacing my work
It helps if I can work along side someone or if someone can share the work 
with me

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. 
Thank you.

--Rob Wybrecht

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FASD Center for Excellence trains thousands

By Dan Dubovsky, M.S.W., L.S.W.

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 as:

• FASD 101
• Loss and grieving
• Criminal justice
• Co-occurring disorders and misdiagnosis
• FASD in families
• Psychopharmacology

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.

Dan Dubovsky has worked for more than 30 years in the fields of mental health and developmental disabilities. Dan has presented regionally, nationally and internationally on many topics, including Fetal Alcohol Spectrum Disorders, ADHD, psychopharmacology, transition, socialization coaching, schizophrenia, mood disorders, loss and grieving, and therapeutic alliances.

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Group therapy for youth with FASD

by Kieran O’Malley

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 FASD.

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.

Kieran D. O'Malley, MD, works at both the University of Washington’s Fetal Alcohol and Drug Unit in Seattle and in a Calgary community psychiatric practice focusing on patients with FASD and Autistic Spectrum Disorder.

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Mother to 13 children

by Julie Gelo

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.

Julie Gelo is an Iceberg board member and lives in Bothell, Washington.