Lifelong Learning Programme

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Elisa

Elisa
Language: English
Country: Italy
Typology: patients and relatives
Text:
Telling Elisa’s story is certainly limiting: you must know her to understand her, but I will try any way. Elisa is fifteen years old and she’s a joyful, smiling, funny and witty girl. She likes music and dance very much; she loves Walt Disney films where the main characters are human beings, she identifies with female characters and with their deeds. She has an excellent memory, especially when it comes to rhythm, she actually loves to do the "game of the rhymes". She does not stop to observe because she does not have the "patience" to do so, but she needs only a look to grasp everything, including the details. She is very sensitive and acute, she knows how to interpret the emotional nuances of her interlocutor: it is not unusual that, even without looking at your face, she asks you: "Are you sad, are you angry, is there something wrong?". She is able to really understand an adult or one of her peers, she immediately realizes whether people are sincere and acts accordingly. If there is no empathy, there is no doubt that she will do everything to make the other "hate" her and then stay at a distance, she understands it with a simple gaze, she "feels" it when people look at her with little respect, and it has already happened several times. She is also very provocative and, during the last few years, due to adolescence, she has especially opposed her parents. She was born after a pregnancy without problems and a very usual birth; pre-natal examinations had not found anything pathological: everything was "normal" until the first convulsion, which hit her at eighteen months. It was caused by hyperthermia and, consequently, no specific test was recommended. Afterwards, at the age of three years, after the second convulsion, an electroencephalogram was recommended: the Neurologist considered the resulting anomalies as "functional". Meanwhile, Elisa’s balance proves to be precarious: she stumbles every time she tries to walk, falls and hurts herself, she does not hold up objects that are in her hand. I always give her my hand, I do not leave her alone. But I am told that I am overprotective and full of anxieties, that I must "let her go", but she falls… Elisa’s growth is physically miraculous, she grows a lot and quickly, she eats a lot and, in spite of everything, she is very precocious, but her balance is very precarious and her relational inability puzzles me. She fails to concentrate: she starts playing a game, but she does not accomplish it, she starts playing many games, but she is not able to "stop" to finish even one. She does not talk very much and she always uses the third person. If she does not understand a request, she does not ask to repeat it, but changes topic, as if she does not want to declare her inability to understand. She follows a long and tortuous therapeutic path to search for one or more drugs able to monitor the disease that, after some time and through various specialists, is finally classified as genetic. Self care is compromised and is still not autonomous, she orientates herself sufficiently in space, but not in time, she fails to practise any sports and recreational activities are very difficult for her. She stays at the elementary school during all the school time, she stays in class, she goes to the school canteen, except for the two afternoons in which she has psychomotor lessons, that she will follow for four years. She participates in all didactic outings. Phonetics is compromised, but her speech therapist argues that "as of now" it is not proper to intervene. Reading and writing are extremely difficult for her. She has a good relationship with her mates, even if she cannot keep up with them. She starts secondary school and the "battle" for "cut" hours begins: during the three years of secondary school, Elisa spends 23 hours/week at school, against the 32 hours/week of her mates. On Monday, she remains until 2.20 p.m.; whereas, the other days of the week, she remains until 5 p.m., she thus goes to the school canteen, a moment which is very delicate, but also very important to socialize. Since the first day, her reference teacher makes her enter the class and stays with her for at least one hour and, if she is quiet, she manages to stay until the end of lessons; she goes out thirty minutes before the others. She participates in all school outings, which are very important for her integration. Excursions last on average one week: she is happy to stay with the others and outside home, and, when she returns from a trip, she seems another Elisa, she is more relaxed and happier. With the help of her teacher, every Saturday we organise a meeting with her schoolmates, with not more than two/three girls at a time, so that they can all be together with Elisa and then we have dinner all together. It is a good time for Elisa, because school helps her to make great strides toward independence and socialization, even if the difficult period of adolescence increasingly poses obstacles to progress: it begins in the second half of the first year and, since the second year, it has been characterized by a crescendo of opposition and restlessness. The plurality of people scares her so much that she gets very nervous. We choose three of her eight schoolmates and we invite them to go on holiday with us to the seaside; we invite them also the third year and we still meet today and spend the summer holidays with a "survivor", who has always said she enjoys staying with Elisa. But, alas, secondary school ends and, needless to say, we have proposed she should repeat these school years, but we have been "advised" not to do so by her teachers. However, it must be said that Elisa has become quite disturbing and she has not lost her passion for glasses and long hair, that she takes away and tears when she wants to express a moment of discomfort that she cannot verbalize. At present, we have chosen the school that the teacher of the Social Service recommended to us, because it is known as a "welcoming" school. The teachers, with whom we have previously spoken, seemed quite pleasant and proactive; in addition to that, the natural environment in which it is located, surrounded by plants and far away from the noises of the city, could be an excellent alternative to the classical "lessons" made in class. This, however, has a twofold aspect: if, on the one hand, the natural environmental aspect has a relaxing function, on the other hand it lacks the variety of people you find in schools in the city. Elisa’s teacher has often taken her outside school when she cannot stay in class, so that Elisa does not isolate herself too much and does not start "fearing" people. To tell the truth, I thought of registering her in Eleonora’s school, Elisa’s mate at secondary school, the "survivor", a professional school of graphic arts, but the educator, who has known her for some years, did not agree with me and argued that a school of graphics could not be suitable for Elisa. In my opinion, however, any school is good for Elisa, provided that it has the capacity to accommodate her The first year she is allowed to stay at school for up to 17,5 hours/week, against the 32 hours/week of the other pupils at that institute. Elisa is cared for, in turn, by three support teachers and two educators. She remains in class for most of the time and stays with the others, also during the break. Then she gradually becomes more and more restless and disturbing and she stays in class for increasingly shorter periods of time and spends increasingly more time in a room with the support teacher/educator on duty. Currently, she has "lost" other 2 hours and 30 minutes: she is permitted to stay at school for 15 hours/week! They have "reserved" a little room for her, and there she has remained every day from October till today. At the beginning of school, she used to stay some time in class, but then she seemed to have become very restless and disturbing. She has become increasingly more "frightened" by the others. With an adult person who is self-confident and respectful of her timing and of her difficulties, she is able to behave properly and her "fears" are very limited and do not lead to aggressiveness. I would like Elisa to stay in class even only for one hour a day, which would mean she could also hear other teachers and the interventions of her mates, she could live in the day-to-day "real" life for a girl of her age, but it is as if her reference teachers "feared" to keep her in class… The answer of a teacher to my specific question is that Elisa must "still learn how to deal with other people". But how can she learn, if she remains alone for three hours in a room with a teacher? Another teacher, vice versa, argues that, sooner or later, Elisa will stay in class for the whole school time and without any support teacher! Meanwhile, any change to her routine increasingly upsets her, and the consequence is that she continues to frequently "grab" hair and glasses. A teacher who knows Elisa by sight, but who thinks she can replace "her" three support teachers without any problem, and another teacher of the school headquarters, who happened to know Elisa in her "worst" expression, have harshly "reproached" Elisa’s family for “doing nothing” to search for a solution to the difficult situation the school is facing due to Elisa’s disorders. One of her reference teachers, whose self-esteem is very high, wants to replace the already numerous medical specialists who try to control Elisa’s disease. She insistently encourages her parents to administer medicines that "calm her down a little", and, almost on a daily basis, she calls or writes on Elisa’s diary to complain about her state of agitation; she has repeatedly stated that, if Elisa continues to fuss and to pull her hair, the school will be forced to call the "emergency psychiatric service" to intervene… According to me, it is necessary to try and understand why Elisa feels so bad and what pushes her to behave like that, without, however, emphasizing any of her attitudes. It is necessary to try and understand that Elisa is, first and foremost, a teenager of fifteen years old and, as it happens with everybody else, it is difficult, at times much more difficult and tiring, to relate with her! I am quite aware that it is difficult to stay with Elisa and talk with her in a pleasant way, and I am her mother, but, if all the people who deal with her tried a bit harder to understand and accept her needs and difficulties, I am sure the result would be a bit less cruel reality of life for Elisa. Thank you for your attention. Elisa’s mother


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