Review and impressions of autumn festivity and exchange of experiences for families with XXX-girls on 20th of September 2008 at genetikum in Neu-Ulm. Abridged report by Petra Freilinger-Kirklies. Translated in English by Martina, our friend from Austria.

On Saturday, the 20th of September over 20 families met for an autumn festivity at genetikum in Neu-Ulm. All these parents have a daughter with Triple-X-Syndrome and they came to Neu-Ulm, to meet other families with XXX-girls and to exchange their experiences.

Arrival As from 1 p.m. the families by and by arrived at genetikum. Some of them had a long journey, they travelled from Austria and the whole federal territory, from Bremerhaven to Munich, from Erfurt to Bonn and Stuttgart. Over pizza and quiche the families started conversation fast and also the children got familiar with each other in their joint play. Some of the families already knew each other from former meetings in summer 2005 and autumn 2006. But there were also many new faces, who found out about the autumn festivity over the homepage of the contact group.

Welcome After about one hour the parents met together for a roundtable discussion, while the children went on playing together under the care of members of the staff of genetikum. Dr. Mehnert from genetikum welcomed all participants and shortly summarized the two past meetings in June 2005, when the contact group was founded, the creation of the homepage and the info-flyer followed, and the 2nd meeting in October 2006.

Subjects At this now 3rd meeting the subject "school and learning difficulties" and also the subject "When to talk about Triple-X with my child?" were discussed and considered. As professional support, the psychologist Mrs. Nonnenberg, the elementary and consulting teacher Mrs. Durst as well as the learning therapist Mr. Reiner were invited.

School and Learning difficulties The subject "school" was taken up fast and some parents described their experiences. So it seems to be a common problem that some of the girls are very "dreamy" and thus e.g. they tax their mother's patience in the mornings until they are finally dressed and ready to go to school. One of the mothers reported that, in order to get the morning stress situation under control, she uses several alarm clocks, to manage tooth brushing, getting dressed and having breakfast within fixed time periods and to thereby establish a highly defined procedure. Concerning school performances the XXX-girls seem to be quite different. Some of the girls have no performance problems at all and some of them have severe learning problems. Some of the girls were diagnosed with an auditory perception disorder.

Learning types Mr. Reiner explained about the different "learning types" and defined the so-called "visual learner", as it e.g. was the case with Albert Einstein. He recommended to first of all reduce the pressure, as no child is able to learn under pressure. This was also supported by the psychologist Mrs. Nonnenberg, who referred to the findings concerning brain development and learning by Prof. Spitzer. She furthermore pointed out, that parents should again and again emphasize to their children, what they know how to do well and so they are supplied with feelings of success in order to get out of frustration and to establish self-confidence.

Professional Support In case of educational problems, Mrs. Nonnenberg recommends to have no timidity to also consult an educational counseling center."External" professional support can often be very helpful and parents should have no inhibitions to utilize this possibility.

In case of problems at school, the consulting teacher Mrs. Durst recommends to approach the teacher in time and to bring the issues up. She personally would favor to know about a girl's Triple-X, as she could be more appreciative of a "bit different behavior" or a possible learning difficulty and she could respond to problems more individually. As classes often are very large, a danger exists that the especially shy and reserved children receive less attention, as the teacher in most cases mainly cares for at first sight noticeable and noisy children, to restore calm in the class.

Professional discretion It has to be decided individually in each particular case, if the teacher will be informed about Triple-X or not, this of course depends on the mutual trust and the particular personality of the teacher. Teachers in general also have a kind of "professional discretion". Some parents reported that they have made very good experiences, when they "inducted the teachers into the situation" and their daughter thereby received considerably more attention and a better support. Some parents have fears that by using the term "Triple-X-Syndrome" a possible stigmatization occurs and then small difficulties are immediately linked to the "syndrome".

The conclusion is that no general recommendation can be pronounced, who should be informed and who not. Mrs. Nonnenberg recommended to balance and to question the advantages and benefits in each particular case.

When to tell my daughter? Also the question "When to tell it to my daughter?" has to be answered in each particular case. If everything works out and no reason exists, then there is no necessary need to inform the child about Triple-X. Should the child itself however consistently question, why it e.g. has more difficulties at school as compared to its siblings, then this could give cause to talk about Triple-X. It is then of course important to convey to the child, that it is "nothing serious" to have Triple-X, but that this could explain one or another problem and at the same time also explains strengths of the child in other fields. So some parents reported, that the XXX-girls outmatch their siblings concerning fine motor skills and that they also have a very distinct social behavior.

Conclusion After 3 hours questions, answers, discussion and exchange of experiences it has been summed up, that some similarities between several Triple-X-girls have been discovered, in some points they are very similar but that there are also often problems which all other children can have as well.

Over coffee and cake the families and their children came together for conclusion and had the possibility to exchange among each other respectively to contact the experts with personal questions. Many thanks to all families and participants!

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