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Per i genitori......... anno scolastico 07-08, La scuola ha lavorato bene con vostro figlio, siete soddisfatti ?
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Percorso» [ HOME / La mia storia / My History ]
Buona sera! Oggi è: Martedì, 07/Febbraio/2012, sono le ore: |
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My History
VERSIONE-ITALIANA
My name is Alessia, I was born in Oristano on 29-04-1991 at 1.20 a.m. I weighed 2,850 Kg, 48 cm long, blood group Brh+-G.6.P.D. (favism):intermediary lack appearance....Oriental!?!??
What happened to me? Mother and dad at first sight seemed me to be Sardinians (but really Sardinians). So it was necessary to perform the analysis of the Cariotipo on crops of linfociti of the peripheral blood, which have given the following result: Female Cariotipo with Trisomia 21 of the chromosome n.21=47,XX,+21, in other words, Downs Syndrome...
And now what am I going to do? Or rather, what are we going to do? 
Mum, dad and Jade (yes, I also have a sister that is three years older than me and she is a pain in the neck; but don´t tell anybody), they go straight away to the doctor (the best in the world, no joke!!) a certain Prof. Antonio Cao, who, bla..bla....bla, informs us that in my chromosome there is an intruder that will slow down my growth but that, fortunately it won´t prevent me from becoming as big as the others. I would say great, beautiful and good....now we are talking!
Mum and dad are still a little confused ones but I hope that this confusion won´t last.
Our adventure together starts here, everything but Indiana Jones, and I begin to grow up. Mama mia, how much work however!! I could be wrong, but to me it seems that the other children rush more and more and very easily beat me. Thank goodness my family understands it and every conquest of mine becomes a real celebration, we just lack the fireworks....but it´s better like this because I´m afraid of certain low noises, I prefer cuddles, caresses, kisses etc.etc.. I make my point?
Meanwhile mum and dad enrol in a course of correspondence for parents of Downs children, near the consulting service pedagogic of Trento and they place me on a covered blanket in front is an enormous mirror that they have attached to the wall of the kitchen. There I see a baby me appears to be a very round potato.....it´s so funny! However I really like to touch her, to look at her and to speak to her. Sooner or later we will become.
I´m now five months old and if you are good I´m show you some photos, and I´m tell you what I can do now, pick the nose of my grandfather Piero or my grandmother Adele and I do ding-dong like the bells. However they taught me how to do it, because practically on the day I live with them. Instead Jade goes to kindergarten and mum and dad, they work; but I have a good time with my grandparents because they talk a lot, maybe this will make me talk soon. Let´s see!!! I was right. I´m 5 ½ months old and I call my sister "da-da". Fantastic! If I continue like this in a year time, I will recite some poetry of Rodari. I´m joking!! However at six months I can wave hello with my hand. By the way I forgot to tell you that instead of the nose I pick grandfather Armando´s moustache.
And so, in the middle of am this fun, November 20th 1991 a surprise happers we leave. We leave all of us take a ship, our destination is Saint Marinella (RM)-hospital Bambin Gesù to see Prof. George Albertini and his team of experts. And here I receive my first diagnosis.
We go to a day-hospital for two days than I return home. Naturally we are all excited. Lots of compliments have been given to me, and so much advice to help me develop well. I now fell more relaxed particularly and mum & dad begin to relax more. The next appointment for S. Marinella is for June 1992.
Meanwhile I keep on growing, I have a beautiful character, I always smile and always chatter away (who knows what I´m saying); however I always saw speak. The funny potato that I always saw in the mirror, was really me?? What a shame!!
However from what I hear from to mum and dad, I need to do some physiotherapy. What will it be? I only hope that it isn´t painful.
Well, between a hope and a prayer mum and dad they decide to wait for the next day-hospital so they can ask the Prof. Albertini.
Whilst waiting, I focus on Jade. I´m beginning to know her better and I have to say that she´s not that bad (so far!). When she returns from the kindergarten she always plays with me on the blanket. George has said that Jade´s help will be very important for me. We´ll see!!!
Now, mother is worried about my weight that is rather low. What´s happening?
June arrives at the last and we can leave again. Also the visits are carried out by the same team. By the way, George tell us that the placement in a physiotherapy centre, will be good, and we return from Rome and have we go another adventure! Therapy and new games at AIAS of Cabras. A yellow valne, my favourite colour, comes to collect me from home. Wow!!
My progress continues, my verbal language is adequate for my application, (I was right, my grandparents are good for something!), I am curious and celebrate the happiness my relatives....finally walking alone without any support. It was taken to years, however! It seems, the researchers of the University in the Michigan, have discovered that the exercises with the tapis-roulant help Downs children to walk faster. mum read in the monthly health magazine "Optima" that you find in the farmacy. My unusual growth continues, Prof. Cao keep an eye on me. I return to S. Marinella in May 1993e......damn, they find me skinny and carry out intensive analysis and tests. Good grief!!
By now, the funny and plump tomato of before as given way to a rather thin and small baby, but beautiful, let´s say that a last! Meanwhile my relatives plot together to get rid of my beautiful nappies.
They tell me to do my business inside a "vase". What hard work!! I sometimes fell a little damp, which bothers me because I have to go to the kindergarten, I will have to learn quickly in the daytime it is rather simple but at night I sometimes wet the bed. Oh well!! For now mum and dad will have to be patient.
Ever to ally the first day of kindergarten arrives, there are a lot of children some afraid and crying very weak; but I am stronger than them and I don´t cry, actually I widdle some of them. Jealous??
The big problem remain the food. It doesn´t agree whit me, so in October 1994 we return to George Albertini who among the other things proposes a programs we have to perform together at home. Idea fantastic! Photographs me, the family, the school and the house; all to be chronologically organised with comments etc.etc... What a responsibility! I hope to be able to do it!
At school meanwhile I do my best games, listening, drawing (not drawings just scribbling!), but do you aspect from me? I´m three years and half and a little shy.
Another year passes and in October 1995 I go for a fifth time to see George and his team. I have forgotten to tell you that the food now doesn´t seem as bad as before,(to see other children eat in the kindergarten has inspired me a little), now I eat some pasta and also some bread, but it is always a little and I remain skinny the same, and my belly is always bloated and is painful. Mah!!!
In Saint Marinella they say that perhaps problem is "celiachia". To the USL, to start some speech therapy recommended by George at the day-hospital on October 10th 1996.It seems that some dislalias still has to be corrected. Ok! The main point is that we get there quickly. Next year I will begin to attend the elementary school; but Barbara (the speech therapist), she knows what she is doing so in a few months, from November 1996 to March 1997, we will resolve the problem. But the problem of my tummy when will that be resolved? Guess what have diagnosed following a wonderful biopsy of the intestine? That´s all I need? However how wonderful now that I have begun the diet I fell much better. I eat happily and I don´t have belly ache anymore. At last!! Only now I have another problem. My right eye moves on its own and I looked cross-eyed; to Nuoro they make a great diagnosis: I´m blind in my right eye. Full stop! These people appear incompetent. Mum & dad talk to George who is in Oristano for a conference and he gives us an appointment to Rome, not to S.Marinella, but to a Nursing home St.Raffaele, where he has been transferred to. He will see us next October. Meanwhile I am busy at school, in the near time I have begun the first elementary school, so I can say I´m big now!!.
Whit Graziella my support teacher I learn to write, in print then jured up. I read, draw and I adore my teachers Antonietta, Michela, Bernardo and above all Dante. What moustache! And that smile. Whit him I feel at ease, however he teaches a subject I don´t like: mathematics. If I´m patient, I´ll learn to like it some day. Who knows!!
Whit Jade everything goes smoothly though she seems a little over protective. Finally in October 1997 we go to St.Raffaele. The greatest problem, if you remember is my right eye and I was right me in Nuoro they were correct , the eye is not blind, but I don´t see very well. We need to bandage my eye to make the other work harder. I have to wear the patch for a year. What a pain, it really bothers me, but I have to be patient!
Another problem.....Jade, as I thought she is too attached to me and won´t trust anyone else to look after me; neither mum, dad and much less so my grandparents, because she says they don´t successfully take care of me, so she worries and cries; she won´t ever play whit her friends anymore in order to stay whit me; she has said that I shouldn´t go on school trips as she will lose sight of me and not be able to look after me. I feel sorry for Jade because she is suffering so much. I really think she should to the psychologist Mrs. Orsini (who I like very much!)
However, between 1998 and 1999, the visit to St. Raffaele have been very frequent because of my eyes , in December 1999, Prof. Vadalà and doctor Vadalà decide I should hava an operation at the hospital Bambin Gesù of Palidoro. I think at last I´m going to get rid of the bandage. However in reality the bandage remain after the operation. The doctor and the eye specialist whit her long stork like legs are inflexible. This is a nightmare!! And so are bandage and another (and a curse ), we arrive at December 15th 2000 and the stress is lifted. Now I am ten years old, my health and development is under the care of a lot of nice people: Prof. Cao personal paediatrician, Dr. Congia from Cagliari and Dr. Mureddu from Oristano for the celiachia and the whole staff of Prof. Albertini in Rome. For two years now, my support teacher has been Beatrice, who as taken the place of Graziella. How lucky I am!!
Problem, don´t go away over right; I now have curvature of the spine to control, but whit all of my guardian angels, it isn´t a serious problem.
One thing we haven´t succeeded in changing and improvising is the relationship 1:1 whit the teacher of support. I have never had him; the maximum one has been this year whit 15 hours. Next year I will go to the middle school and they will be assigned only, very probably, me 6 hours. A real shame!! Mum and dad are disagree! What will it happen?? Meanwhile, for to abolish this lack, directly in house, a didactic educator follows me, she called Silvia; you should see how much beautiful and how clever girl!!! Whit regards to Jade: the talk with the psychologist has done really done her good, she doesn´t cling to me anymore instead we fight and fight.....but immediately make up!!!!
Ciao a tutti Alessia
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