X Fragile - Il Filo di Arianna
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Messaggio  Admin Mar Feb 23, 2010 12:24 pm

Arianna's thread
Initial Hypothesis

Arianna gave to Theseus a ball of thread that allowed him to escape safely from the labyrinth. A ball of thread that in front of Theseus' courage, strenght, cunning might have been a stupid thing, of no value.
"A ball of thread ... 'a lady thing': it is not steel, it doesn’t penetrate, it does not hurt, not defending, ...".
Theseus accepted this because Arianna revealed to him the power of that ball of thread.

Arianna's explanation gives power and value to the thread.
Without this explanation the valiant Theseus would not have given any value to the ball of thread.
This one contained the power of Arianna's love.


Perhaps this mythological allusion will allow me to clarify the suppositions that regulate the projects and the operating routes within the field of Special Pedagogy and Didactics of Integration.

In the analysis-confrontation that is developped with families of people with Fragile X, it is very frequent a condition that I find recurrent and distinctive. The child, the person with Fragile X finds “difficulties” to chain the experiences in a significant system that should be able to run through back and forward by the use of the thought: it is like he/she often found himself/herself in a labyrinth.
I think, on the base of my hypothesis, that the child sometimes finds himself/herself in a monad, in a familiar situation but loses the sense of the motivation and the way he arrived in that situation and where he/she should go to carry on his/her experience. A Theseus, the child, the person with Fragile X which, under certain conditions, in the middle of the labyrinth could lose the thread that Arianna gave to him.
In my metaphor, the child, the person is like someone turning around as in a labyrinth having the feeling of being always in the same place and/or of finding themselves always in environments that have nothing to do with the previous ones.

Still using the metaphor:

WHAT would need to Theseus-person-child-X-Fragile TO ACHIEVE HIS/HER PURPOSE?
Great courage and self-confidence (love from their family and support from the psychological area).

Arianna (who, from outside, analyzes the problem and seeks solutions, both in theoretical and practical fields: researchers in Special Education and Didactic of integration area)

Who knows the complexities and pitfalls of a labyrinth (neuroscience area)

Who works as thread in everyday life (adults, parents, educators, teachers).

By transferring the myth in a work plan, there are certainly many things to "ajust". However I think it is useful to work through the metaphor and making reference to a myth because in such archetypal and open dimension to structural conjectures, wide horizons are possible for structural adjustments
needed in the formulation and evaluation of hypotesis, that are to be verified in a field far more rigorous which is the scientific research. .
Of course, I repeat, mine it’s only a hypothesis that is useful for me in order to provide coherence to the project. One hypothesis that searches for harmony of the neuroscientific and psychological hypothesized as a consequence of Fragile X (1).


We remind and we hilight that the multi and interdisciplinary project, established with the National Association of Fragile X in the meeting that took place in Rome in June 2009 named "Arianna's Thread”: An example of multi and inter disciplinary approach to intelectual disability through a program of scientific research on “Fragile X Syndrome" is absolutely not a therapeutic project but
Just a Pedagogical and specifically characterized in Special Pedagogy and Didactic of integration field.
Moreover, it is absolutely necessary to underline that the interventions are not substitutes of those activities that the "child/boy" is doing with obvious successes, but also it is usefull to orientate what it’s already done successfully having a methodologycal base agreed with the colleagues of Neuroscience and Psychological areas and congruent with the "Conceptual Framework" issued in Rome during the multi-and interdisciplinary meeting.
The institutional reference that we find out the formation-action-research is an agreement between the Italian Association of Fragile X and the Department of Science of Education, University of Bologna, which, it entrusts the scientific management of the research to the teaching Special Pedagogy and Didactic of Integration under prof. Nicola Cuomo's responsibility.

Surely Professionist’s collaborations are essential for the research of the contexts in which families are included because it’s to be implementing, by doing, methodological hypothesis about the overcoming of the difficulties concerning learning and teaching and for such actions it is necessary a close synergistic cooperation with the operators of the local institutions (2) (the University does not provide services but it’s a research institution).
With the institutions and the professionals of Local Services it’s necessary to create complementarities, synergies, a collaboration between the University (an institution responsible for the rigorous scientific research) and the structures of local services in order to enlarge the field of investigation and intervention through inter-institutional synergies.

Once the membership and institutional responsibilities are clarified as well as the research-training-action, "the thread of Arianna", will avail itself, underline, with the presence of highly qualified scientific field colleagues Albertini and Biondi.
I remind to the colleagues of the Territory that the University is qualified by the Government and it’s mission to promote and carry out research on the field. Moreover, in the specific issues of people with special needs, the Law 104 requires the cooperation. (3)


According to what I previously mentioned it would be highly at risk of harm for children and people with Fragile X those didactic-educational strategies which tend to fragment, to break apart, to reduce micro-units the learning-content as the experiences in such as in adequate situation, in order to be useful have to be administered in fragmented, monotonous and repetitive exercises.

To avoid the teaching by stretches

Teaching by stretches is like trying to teach how to play chess by learning the movement set for each "piece", its function and mobility. In this way it’s very difficult to understand (especially for people with Fragile X) that the game has a system of rules and, although it’s maintaing the motion peculiarities typical for each piece, these properties change the quality of value relative to the position of the
other "pieces" across the chess board.
Teaching and learning by doing monads, it becomes extremely difficult to understand the dynamic system of the game, the strategies and the tactics which, even without changing the rules established prior to each "piece", allow each time to play a game always original and unexpected.

If what we have written above is valid for learning to play chess, you can imagine how valuable is that in the acquisition of those useful skills for autonomus and independent living.
In everyday life, where unforeseen problems are likely and recurrent, if having experience and knowledge about the world it’s done through an organization of monads, "separated stretches" it becomes difficult to learn to organize, predict, hypothesize, plan… to think of a way of autonomous and independent life.
To avoid fragmentation, division in "experience stagnant compartments", experience where people with Fragile X do struggle to make unitary sense, it is indispensable early style of education that goes permanently to integrate and to interconnect, to concatenate relational, sensory, emotional and affective experiences. A global didactic laboratory based, an active school on the cooperative model that places the person in learning processes and strategies.
A model of didactic-educational-training lived, and not suffered, where children, people with Fragile X are early placed in the processes of the flow of experiences designed to make them intimately consciousness and, together with the concepts, notions, and to learn strategies for learning.
In the light of these risks of fragmentation of the experience it would be necessary to integrate the everyday events, happenings, ... in a project that highlights the unity of meaning of the experiences, of the activities identifying them by emotional imprints that offer a concatenated and unitary sense.
An educational didactic integrated project lived and not suffered of the experience that we will have to have a focus on the contexts, situations, relations atmosphere, ... with an emphasis, through strategies and mediator tools, on the processes and motivations that concatenate the events giving them a sense.

The participation of the families

It is therefore essential that the family participates to the projects for their children too be characterized by a breakdown of the activities to assess whether there has been concerted, integrated with each other and if they create a path system to which their children can refer to a development, to cognitive and affective unitary growth and to integrate their knowledge and experiences in a clearly readable, coherent, unified structure.

A sum that is not always convenient

It is necessary to be evaluated and keep under control the risk of many interventions, even very good in their singularity, but fragmented, not connected one with the other. It is not certain that the result of many valid interventions separately, is adequate (considering the unitary aspect of the effects).
More than a sum it is necessary an educational-didactic dimension that in the everyday life would be able to build the structures of learning. A system that involves the processes, obviously processes made in order that the child, the person notices the interconnections, the assemblages of experiences and their senses.
A Arianna's thread that goes to connect and interconnect the senses and the events that are connected between them.

The reflection that Filippo presents

As the desire to eat, the appetite which Filippo has proposed since the early months (child with Fragile X about six years old) the opportunity to keep track of events, the cognitive map of what and how to achieve the goal of eating, as well as the music and the rhythms involve him in an integrated way where the projects must propose interconnections that produce understanding, and orient, which offer "Arianna's thread" so as to understand where he comes from and where he is going to.
A "Arianna’s thread", a compass that helps to orient themselves in memories, in the ways of thought, in the reasoning. Dimension that offers guarantees. Certainly the laboratorial dimension is better suited to introduce the capacity of chaining the experience and reflection on this one. The laboratorial dimension it’s surrounded of doing because it’s a practice where we move toward a concrete goal visible through doing, taking, harboring, transporting, pushing, ... observing, listening,... permanently proposing, gestures, objects, organizations,... to remember the route as a sign of my own presence.
Also in the everyday life and laboratory practice it’s important to keep the focus on the consistency, on the recursion, on the meaningfulness of activities otherwise there is the risk of losing the reasons that involve the experience, the events lose their train of thought.
Even doing a very slow and "chock full of verbal explanations”, can be very disorienting. Actually, pausing to explain through the dominance of the language the paths of word, the how to do, what to do... can bring the risk of losing the thread of discourse. It is like reading an instruction manual for the use of a VCR, of a camera, the meticulous explanations are losing sight of the totality of operations, while the example of the quickly explanation of a friend, with a few words, is very clear.
Contrary to popular belief (as one follows the injury of when we think as children, people slowly), it is often useful to be essential, fast and do not involve in so many words. The example, to show, to imply in a rapid involving of a learning process, offer many more chances to learn (4).

(1)The research that we are setting with the colleagues of the neuroscience and psychological fields can offer us inter and multidisciplinary referees extremely useful to guide learning and teaching practices and to adequate measures for the development of the cognitive and affective potential.
Will be "marked" in four days of day hospital at the San Raffaele La Pisana in Rome a few points of departure of the children taken as reference, starting conditions that will be rechecked for evaluations at the end of the first year of action-research-training.
Diagram of the 4 days at the San Raffaele La Pisana Rome.
- The first day after the medical history, will be dedicated to testing the evaluation generally the quality of life and functioning of the person (test AAMR, Vineland -- internationally recognized for research purposes). After we will make the EEG and the phisiatric visit.
- The second day will be dedicated to language and learning (tests vary depending of the age)
- The third day is dedicated to the psychological area with the video on the model Dosen, the projective-material test usefull for my colleague Biondi, so testing the quality of life "quality of life", will be visited by the Oto-Audiology and ophthalmologist.
- The last day will be dedicated neuro-psychological area (tests about attention, memory, PM, IQ).
The Colleague Albertini has prepared everything so that all tests would be videotaped in order to have a qualitative indication.

(2) Cf. The request for cooperation by the Teaching of Special Education is directed to both the scientific responsible of AUSL and school directors.

(3) cf.: Law of 5th February 1992, n. 104 (in OJ of 17 February 1992) Framework Law for the assistance, social integration and rights of people with disabilities Art. 5 - General principles for the rights of disabled people –
1. The removal of the debilitating causes, promotion of the autonomy and the realization of social integration are pursued through the following objectives:
developing scientific research, genetics, biomedical engineering, psychology, social and technological skills through programs aimed and agreed with public and private institutions, especially with the universities, the National Research Council (CNR), with health and social services, considering the disabled person and his family, if involved, actors involved and aware of the research;
Moreover in particular:
e) ensuring in the selection and implementation of social and health interventions the collaboration of the family, of the community and of the disabled persons, activating their potential capacity;
h) assuring the disable person and family the appropriate psychological and pedagogical support, personal or family support services, tools and technical subsidies, foreseeing where strictly necessary and for the necessary period of time, additional economic measures to achieve the objectives that this article refer to;
l) guarantee the right of choice of more suitable assumable services even outside the territorial district.

(4) In the discussions with the parents often emerges that their son paid more attention to the faster scenes of the film than to the slow ones, he let himself to involved, understanding the sense of what to do when he was in a hurry and there was not much time for so many explanations.


Numero di messaggi : 122
Data d'iscrizione : 08.07.09


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