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FAS Symposium

10.09.2005

Mülheim / Ruhr, Germany

Part 1

 

 Fetal Alcohol Spectrum Disorder –

An Avoidable Tragedy 

„ People with Fetal Alcohol Spectrum Disorder do not get diagnosed very often in Germany and the public is hardly aware of the problem. It is a spectrum of physical and mental disabilities, which occur when mothers consume alcohol in pregnancy. […]

“Experts are increasingly finding children with unsocial behavior, learning disabilities, language disorders, ADHD and other conditions. They might connect these conditions with FASD. In Germany however, there are no criteria with which the spectrum of FASD disabilities can be classified as an independent prenatal disability.”

These are only a couple of statements from the Fasworld e.V. symposium program. This year’s symposium was organized under the patronage of Mr. Karl Hermann Haack, special rapporteur on disability of the Federal German Government and of Mrs. Ulla Schmidt, Federal Minister of Health and Social Security.

 This symposium takes place in September in observance of International FASD Awareness Day on September 9th. Fasworld organized the first FASD Awareness Day in 1999. On FASDay people all over the world raise awareness for intellectual disabilities resulting from prenatal alcohol.

Why 9.9? A child grows 9 months in its mother’s womb and is dependent on its mother doing everything possible to ensure it’s healthy growth.

Public awareness is mostly steered towards detrimental effects of nicotine in pregnancy. Also a lot of people seem to know about damages affecting drug-addicted babies.

Who really knows exactly what damage is caused by alcohol in pregnancy? This issue is handled very vaguely and is treated as a taboo subject.

Fasworld Germany sheds light on these topics and organized between 2002 and 2004 three FAS conferences at the DRK-Clinics in Berlin-Westend. For the first time this symposium took place in the “Ruhr Area”.

At first it wasn’t clear, whether enough people would find their way to the new location. Fortunately this fear was uncalled for. A lot of people traveled hundreds of kilometers to attend and stayed loyal to Fasworld. Many others hadn’t heard of Fetal Alcohol Syndrome before and were surprised, how much this syndrome already had controlled their lives.

The symposium’s organization was very effective, only time seemed to fly by too fast. I noticed people finding to each other during breaks, discussing topics, exchanging experiences and getting to know each other.

I had the feeling, that it was the very emotional topic itself that drew people together and enabled them to open up to strangers. FASD is a tragedy, which affects thousands of people in Germany. In my opinion, our government won’t be able to decrease it’s occurrence by publishing some nice looking flyers. Officials should show more commitment to the cause!  

 There was high participation in all workshops and the topics were so engaging that people were still discussing beyond schedule. I would like to emphasize on one more topic: Fasworld invited experts and specialist to a round table discussion, about what needs to be done not only in the near future but also later down the road. We are very eager to find out to which conclusions they have come and hope that there will be more opportunities in the future for such interdisciplinary discussions.

This symposium was a success thanks to a great number of experts.

Prof. Dr. med. Hans-Ludwig Spohr, DRK Clinics Berlin Spandau, who was in Poland speaking at a FASD-meeting the day before.

Dr. rer. med. Reinhold Feldmann, Psychologist at SPZ University Hospital in Münster, who spoke about FASD on German TV on FAS day, September 9th.

Dr. med. Brigitte Majewski, pediatrician and psychotherapist at the Institute for Youth Care Work in Duisburg, whose husband was one of the leading professors and researchers in this field at the University of Düsseldorf in the 1980s. Dr. Majewski is confronted with FASD in her daily professional work.

Frau Dipl. Psych. Gela Becker, Psychotherapist, family therapist, technical director of Verein Sonnenhof e.V. Berlin, who spoke about „FASD – children growing into adulthood“ by presenting a community living project for adult patients diagnosed with FASD.

Dr. phil. Martin Zobel, Psychologist and psychotherapist in Koblenz, scientific researcher at Daun Clinics, researcher at the Center on Applied Addictions Research in Koblenz, professor at the Catholic University of Applied Sciences in Cologne and the expert on children affected by risky environments within the family. .  

 

 

 

 

 

Papers:

1 ) Dr. Reinhold Feldmann - Introductio

One of the first important messages was, that even small amounts of alcohol consumed during pregnancy can increase the risks of birh defects.

Dr. Feldmann explained FASD’s dysmorphic facial features with a multitude of pictures. But even more important are the invisible symptoms of neurological damage caused by alcohol, which occur in patients with or without facial anomalies.

Frequently prenatal alcohol causes a lower IQ, even if no external damages are visible.

Dr. Feldmann explained some of his testing procedures.

People affected by FASD:

  • Are less likely to be able to concentrate adequately.

  • Forget what they have learned as soon as something new comes up.

  • Have frequently fine motor dysfunction.

Dr. Feldmann advises parents to seek interventions because these are helpful in case the child is not overwhelmed. The child needs also to be able to act it’s own age.

Special education should not be the number one solution for children affected by FASD, since each person has it’s very own ability to function – this is also the case for FASD affected children and teens.

Some other typical behavior issues in children diagnosed with FASD are:

  • They like to climb recklessly and have no natural fear of dangers.

  • They run into the street, without watching out for cars.

  • They are too friendly with strangers.

  • They cannot distinguish between friend or foe.

  • They consider a new acquaintance as their “best friend”.

  • FASD Children are naive and easily to manipulate.

They cannot reflect on their own behavior and are not able to understand other people’s intentions. That is why they go with complete strangers. When talking to a child after the fact, the child shows insight and when told not to do this again, will promise to comply, to turn around and do it all over again – because he or she forgot about it altogether.

That is why consequences and punishments do not work, the way we parents hope they would.

Then Dr. Feldmann explained typical behavior of children with FASD on the basis of a classic children’s story “Max and Moritz” (find it in dual language under http://www.fln.vcu.edu/mm/mmmenu.html).

Wilhelm Busch, the author of the story, must have had a model, because he not only drew Moritz’ face with the typical FASD characteristics, but also described typical FASD behavior.

The idea to steal chickens is from Max:

 

                                    Max already with forethought       

                                     A long fishing-line has brought

 

Max is the healthy child. He plans the trick beforehand and brings helping tools    - Moritz follows him and is pleased with the plan. He wouldn’t have had the idea himself.

We saw all those well-known scenes from this children’s book: Max is fishing – Moritz watches him – he is a follower, he is pleased. The same happens at the bakery. Max is the leader, he plans and executes and Moritz is the follower – typical for children with FASD: They are without adequate judgment, naïve, easily manipulated, following others, saying “I want to do that too!” and being proud of belonging to the crowd.

Every time I listen to Dr. Feldmann, it is a very inspiring experience. At the 2004 symposium in Berlin, he equally described our children’s problems in a very compassionate but humorous way, without overwhelming his audience with too many scientific terms.

more Info about Dr. Feldmann (german Text)

 

2 ) Dr. Majewski – Attachment Disorders

Dr. Majewski pointed out at the beginning of her speech, that in spite of all efforts, a therapist inevitably will reach typical FASD limits with his/her patient. E.g. People with FASD are easily over stimulated which causes their inappropriate behavior – her patients’ behaviors show frequently characteristics of typical behavior of children with FASD.

Dr. Majewski explained, how important it is for the child’s development to be able to form an attachment. Trust, security, satisfaction, self-assertion, prospect, curiosity, happiness, but also anger, fear, disappointment are expressions of attachment. Attachment leads equally to: affection, solidarity, loyalty, tolerance, empathy, moral, openness and jealousy. Does a person have a high need for attachment, there is a possibility for intimacy. Is this need very low, the person shows clinging behavior and avoids social contacts.

A feeling of security, which we experience through our caregivers, helps us prepare to form attachments. Attachment and development are closely connected. 

Every single person has different patterns of attachment– for people with FASD these are disorganized.

Attachment disorders interfere with other psychological developments, as:

  • Intelligence

  • Learning successes

  • Emotions

  • Adaptability and social competency

The child’s behaviors change and end up in a spiral of attention: Acting up to get attention even if it is negative attention.

Typical attachment behavior for people with FASD is:

  • Egotism

  • Irritability

  • Stimulation

  •  Invading other people’s space

  • Ambivalence (being caught between different opinions)

Frequently, there is more than one cause for behaviors seen in children affected by FASD. Prenatal alcohol is frequently accompanied by neglect and/or abuse. These factors cause behaviors like aggression, fearfulness and regression (going back to child or baby like behaviors e.g. wetting or soiling).

These children have lost trust in adults and start steeling, hiding objects e.g. food or start fires in search for stimulation. Their needs often create stress and rejection in their caregivers.

What to do, when taking in a child with attachment disorder? Behave towards the child as a mother would intuitively behave towards her babies, using:

  • Close face contact

  • Eye contact

  • Modulated speech (like talking to a baby in a calm tone)

 Basically, raising a child with attachment disorder means starting all over at square one. 

Intervention and therapy for the child with attachment disorder:

  • Consistent caregivers

  • Communication through dialogue and physical contact

  • Structure and rituals

  • Creativity and fun

  • Professional interventions

  • Adequate education

  • Behavior modification therapy

  • Family therapy

==>Top

   Part 2

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 Copyright 2005 by Reinhardt  www.faskinder.de