Lifelong Learning Programme

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Personal Experience

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Marco’s family

Language: English
Country: Italy
Typology: patients and relatives
Marco is the smallest of four brothers and, according to them, “the most beautiful". Indeed, it was easy to bring him up, full of life as he was, lively and vigorous. His character: independent, friendly, strong-willed, capable, sweet, but resolute. Yes, Marco has always been very determined, since he was a little boy. July 16, 1984: Marco suddenly fell ill with encephalitis, which causes him ten days in the recovery room and two months in hospital. His family: at the beginning there is only a sense of loss, and despair gets the upper hand, the only question is: “Why? Why?”. Doctors dare not give opinions on the consequences of the encephalitis and, those who dare to do so, leave us in desolation. But, since the beginning, we must commit ourselves to help him, to help him to live: treat his bedsores, move his arms and legs, do a lot of "clapping" (respiratory gymnastics) and feed him with a spoon to eliminate the tube as soon as possible; then, gradually, with the help of relatives and friends, we should start again to sing, pamper him, keep him in our arms, despite the drip, to calm his weeping… and in our arms Marco is ok. And, from that time onwards, the most rewarding thing is to "take care of Marco", and our choices and actions have been guided by his silent and rich presence. Standing by Marco meant taking the control of the situation and doing the right thing. With his silent and important presence, he has always guided us, keeping us away from banality. Relatives and friends have all encouraged and supported us with their presence, with their help, they have gathered around us. But it has been in Marco where we have found strength, balance, desire to start all over again, courage to pass over doctors’ judgments and to always go ahead. We were stunned by Marco’s illness, it was so striking and shocking, but the image of Marco in good health was alive within us. Matteo used to always come back from the nursery school with new ideas to play with Marco. Maria Anna went to school with “the other" Marco and, day after day, they learned to get along very well together, to understand each other, to interact with spontaneity, serenity and creativity. Maria Luisa went to school with Stefania and learned that beautiful and well-made things were important for all, in the same way, in other words "good fruit for all". We got on very well with Marco, and found out that he simply did not speak or move, but there he was, alive, nice and decided. A suggestion given by chance gave us the courage to take the initiative and go to school camps at Saint Jacques with the parish recreational group of the Parrocchia del Duomo. We had already been there with Marco when he was little. His brothers make their path in groups, and Marco participates in all the collective moments of game and reflection and in the walks. It is there where we met Chiara, who, since then, has been an invaluable presence next to us: she often came to our house to play, and had a fixed appointment on Saturday morning when she came and played with Marco and Matteo, while Maria Luisa and Maria Anna were at school. We have shared so much: thoughts, emotions, situations to solve… She was emotionally and affectively involved, balanced, serene and she had many other good capacities. It was in those times that Christmas preparations became a home tradition. Since the first year of nursery school, Marco had been able to make "homemade" Christmas gifts to mates and friends. This activity began by chance, but, then, it became important, because it enabled us to anticipate Christmas with meetings of design, experimentation and creation, which began as early as Marco’s birthday, in November. Friends have a particular significance in our history: they are and have been numerous, sensitive and available. We remember them all. In particular, a family, which we met already at the nursery school, has become Marco’s adoptive family: at their house and on special occasions, Marco has always had a place of honor. Davide was his godfather at Confirmation. This family has worked as a glue with other families of the school and, with simplicity and continuity, has preserved a sense of spontaneous and free friendship with the aim of getting along well together. In our family and with our friends, we have always celebrated, in all ways and on many occasions. In particular, we remember Marco’s birthday celebrations: starting from the party at his nursery school, every year there were always new, original and appropriate ways to celebrate it. The beautiful part was mainly represented by the preparations, which lasted weeks before the event, during which we prepared the games to play, the menu and we made all the invitations, with the participation of family and friends. We insist on remembering the serene and beautiful moments to keep faith with one of Marco’s clear needs: to always remember the beautiful and happy moments, flying over the rest. This has been the atmosphere throughout all Marco’s school curriculum. School: At nursery school, Marco must be equipped with: - a chair with wheels, built by dad, without barriers around, that allows children to stay in direct contact with him and allows Marco to stay in visual and body contact with them. His chair was never empty: in fact, children said they "played Marco"; - a bench, to be sitting in the midst of his mates; - a Polaroid camera, a valuable tool to immortalize the images of the most significant moments; - a recorder, to record both what he listens to and what he likes, and what it would be important to experience, but Marco is not always present. His health does not allow him to be present on a continuous basis; - the notebook of his experience; - the tapes with the carols and stories that he listens to while having a rest, and that he shares with his brothers and sisters every day and with friends when they come. We interact with the school, caring for his health (this would occur also in the future), thus allowing teachers to invest in school experiences without other concerns. At elementary school, Marco is with some other mates: Davide, Alex, Maurizio, Sara. Marco is already known at school thanks to his brothers and sisters and, after all, Alba is a small reality. Marco is lucky to meet a very special teacher, Sandra, who has just finished a postgraduate course, and is determined, full of ideas, well aware of her role. She recognizes that Marco has the dignity of a pupil, and so do the other class teachers, Mimmina and Margherita. During the first year at elementary school, children learn to read and write. Sandra lays out the same program of recognition of letters and groups on Marco’s notebook. She uses the camera in an appropriate manner to convey a sense of concreteness. With regard to the writing part, Marco is put in the same position as his mates, at the table, and is involved thanks to the freshness and spontaneity of other children, who involve him in every activity. Sandra organizes the psychomotor activities of Mago Birba, with small groups of mates, which consists in expressing oneself freely, on proposals she has previously organized. Then, school continues also at home, where Marco plays together with many mates who, often, come to see him. There is an incredible sharing and collaboration in many forms, but always in respect of everybody’s role. At home, Maria Anna says that Marco as well must do his homework and, from then on, during all his school years, every day, more or less intensely, according to his state of health, Marco has done his homework, with one of us and in the presence of his brothers and sisters, reviewing topics studied in class and preparing the lesson of the day after. It is a beautiful daily moment: the clearer the material provided at school is, the more we manage to be creative, to capture his interest, to develop his skills. It is necessary to listen to and respect the work that is done at school, but Marco puts great involvement and awareness in these activities, and it is a pleasure to do these things with him. His brothers and sisters as well are involved in his homework: each day they take vision of his notebooks and make comments: they are severe judges, they do not behave in a sugary or equivocal way (they reminded me of how I used to behave when they made those same experiences, thus bringing me back to balanced attitudes). Children learn to write by writing their first cards to Marco, to which we answer: a great deal of correspondence arises, with the idea to create the mailbox, where Marco can put his mails and find those for him. Another important means of communication is the board notebook, a notebook on which everybody can write simple thoughts and experiences, documenting this way everything that happens in class. It is the memory notebook. Marco always performs this task, by using his Polaroid or his typewriter. Reflection: the need to use pictures in a certain way, has meant that the photos taken were "targeted at an objective", and were not taken at random, and has provided a work setting. In the same way, records could be fully used precisely because they were made with a sense, on a date, with a beginning and an end. Marco’s mates, then, receive a tape as a gift from us, and they are asked to freely register what they want: the results are masterpieces. Many times, we say: "Marco, have a rest. I leave you with Cinzia, Davide, Sara, Paolo, Davide, Anna Chiara, Ilaria.". Marco is always among his mates; Marco makes didactic proposals that increase in their importance as time passes by and are never banal, but with a precise content and rooted in shared experiences. In addition to such a positive classroom experience, it is worth mentioning his scout experience in the Coccinelle group of S. Margherita. The scout experience involved almost the whole of his class. Marco could make a lot of experiences: games during activities on Saturday afternoon, outings, summer camps. He and his uniform, dad and the bench. Many things were made possible thanks to Roger’s sensitivity: he was able to stay with Marco during those experiences, finding also the right words about Marco’s presence, making the others think and become responsible according to one’s age. Another significant experience was that of the parish choir of the Duomo “La schola”, of which Marco was a fundamental member together with his brothers and sisters, although he could not sing. The period of secondary school was characterized by some difficulties due to the problems typical of that age range and to a relapse in Marco’s health conditions. At the end of the third year at secondary school, we had doubts about Marco’s continuing his school curriculum, although we were aware, as Marco had demonstrated on many occasions, that his distinctive feature was that of the student and that he had a purely intellectual interest for school and for everything related to culture. Following some suggestions, we applied for registration at the Liceo Psicopedagogico. In this school, Marco found a favourable environment, without architectural barriers. His class was located on the ground floor, near the main entrance, thus facilitating entry and exit. By chance, his bench outside the classroom was located next to the snacks and drinks dispensers, in a strategic position to meet people and have a chat during break. The presence of those who were his mates at elementary school, Ilaria, and then Sara, helped him to get to know his new mates. Marco reacted to the new situation with great ability to adapt, overcoming the initial disorientation. Eventually, we supported the proposal to make Marco’s entrance at school coincide with the entrance of all the other students; as a result, awakening, personal care, time, pace of sleep, they all take a different configuration. The way in which school activities are programmed is based on the observation of the initial situation, methodologies and instruments used are very specific, to allow you to customize and tailor the type of intervention to be performed. Thanks to Marco, his mates could discover environments and realities that they would have met only in an aloof and aseptic way, through internships. They approached Marco in a more natural and spontaneous way, by modifying their mental attitude toward disability, which thus became an element of everyday life, even if with special needs. In 2001, Marco started to attend the Day-care Center from 11.30 a.m. to 4.30 p.m. It was like going home: Marco’s teacher or the whole group often diverted the path towards the gym to stay with us a bit longer. Marco found a family atmosphere: people there were serene, attentive to the individual, lively in interpersonal relationships; every day children and teachers welcomed us with real pleasure. They liked to take an interest in him and his things, vice versa, we liked to take an interest in them, in their activities, in their outings, in which we have always taken part, depending on the limitations posed by Marco’s health problems. As soon as you went into the centre, you could smell a pleasant scent of food and perceive a warm welcome that aroused your interest and made you happy. Marco was always with a smile on his lips. Precisely this reception, open to new realities, encouraged our collaboration with the school and with Marco’s mates through the Advent calendar, meetings and parties. In fact, Marco’s particular condition did not always allow him to attend all school hours and to pay constant attention. With this in mind, everything that happened in class was registered through notes and recorder. The continuous presence of the municipal support teacher guaranteed the continuity of the planned work, constituting the "historical memory" of the situation and evolution, and helped state teachers, who changed annually, to reach the necessary level of complicity, which was not immediate, or should not be taken for granted. Laura, his teacher, his mates, class teachers, guaranteed continuity as well. Professors passed from the acceptance of Marco’s presence in the class, which was also cumbersome (chair, table, teacher), to listen to him: they realized that Marco did not only listen to them, but he also wanted to be listened to. They looked at him in the face, they collected and decoded the expressions of his eyes and of his face, they made him questions and waited for his reply, they organized the work in small groups and gave him too a task. Notebooks became more functional and, therefore, they were no longer only pieces, but parties related in an understandable and accessible way. However, it was only during the fifth year at high school that Marco’s educational planning was set out, and it consisted of: - identifying the areas where he was present in a more continuous way; - choosing two or three important points in the school program that we needed to focus on; - focusing on a topic and studying how to face it widely and in advance as compared with the rest of the class. In particular, the project for his high school leaving examination was very significant and representative of the work done during the high school years and showed how we had gradually built a school curriculum which was alternative, but, certainly, not fictitious, or vague, or inadequate. Always with the help of the recordings, the work consisted of readings and analysis of texts taken from books by Pirandello, Svevo, Montale, Fenoglio. His mates involved him in their trips and experiences thanks to their letters. The class teachers and his mates were witnesses of the quality of Marco’s participation. The high school leaving examination represents an important moment and is tackled by Marco with great awareness and participation. This is testified by the words of a letter that arrived the evening before the examination, written by Stefano from the United States, then followed by the mark. «Tuesday, June 15, 2004. Hello Ber (we and also our friends have always given Marco imaginative names). Good luck for your high school leaving examination. Unfortunately, this message arrives after four o’clock in Italy, missing the Alba - Guarene direct line. So you will read it tomorrow. But it is true for the rest of the examination as well and it is true already now - although you cannot directly read it - to the extent to which you can appreciate how much close to you I am on the occasion of the great intellectual moment that you are going to face. The high school leaving examination, looked at not as a sum of tests, but as a crucial moment in which you can affirm your spirit and contemplate the package of cultural and human experiences lived during the years of your training, is a great dramatic moment in the definition of your own human being, and in the connotation of your own place among people. Facing it, that is to say, living it with the awareness and the proportions of this role, is, in itself, a great success. It will be a memory you will preserve with affection and a moment that will contain forever the record of the entire parable of your growth. Someone will talk about this examination with smugness and scorn, defining it as a banal and confused moment you are forced to live. These people are mediocre: they are thousands of miles apart from the sense of things that you express with your participation. Having said that, precisely for the reasons mentioned above, there is no reason to be worried. A smile, a deep breath, and success will follow. See you soon. Stefano.». And here follows the positive result achieved by Marco at the high school leaving examination: «Marco has acquired a communicative style that relies on the emotional sphere, namely: his gaze, his smile and his facial expression. In this way, by involving the other in an experience of dialog and understanding (in one word, in a relationship), he has showed considerable motivation, awareness and interest in school commitment, demonstrating to know the founding principles of curricular subjects; to make links and personal reflections. This communicative style relies on the availability, attention and capacity for interpretation of the Other, who becomes the instrument through which Marco expresses himself. This pupil has shown significant attention, sensitivity and understanding towards the people who have followed this path with him. In particular, his classmates, with whom he has established a deep friendship, in respect of everybody’s personality. The possibility to come into a relationship with Marco, as well as the possibility for Marco to come into a relationship with Other people, requires attention, observation, desire and willingness to share experiences; as well as intellectual desire to know the view that Marco has with respect to himself and to the world that surrounds him. During the exam, this pupil has fully confirmed the overall assessment formulated by his teachers during the course of five years and, in particular, in the last school year. Each of the final tests has, indeed, been very successful, from which the final assessment.».

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