Stefano Baraldi & Chiara Telloni + their family
Giovanni, 12, started going to La Lucciola four years ago. This is his story.
He is the youngest of seven brothers and has Down syndrome, with no complications among those normally associated with the syndrome. He had a good childhood; it was wonderful to wake him up in the morning and hear him say: I'm happy". He followed the entire protocol: physiotherapy, speech therapy (several times interrupted due to maternity leave), kindergarten and nursery school with special ed. Already during nursery we privately attempted with the Feuerstein method, though we stopped after one year for lack of positive outcomes.
With the transition to elementary school we had a devastating experience: his aggressive behaviour and injurious attitudes got worse with two hospital admissions for dehydration and anorexia. The closure was not only relational: he was catatonic, immobile, closed onto himself, he would not accept food or water, and soon his language also stopped. Various attempts were made, including a prescription for benzodiazepines as well as pool and horse therapy school projects that, done individually, did not solve his relational discomfort. At last, the Reference Neuropsychiatry service referred us to Centro La Lucciola. Progressively, we have gone from a frequency of one day per week to two days, and currently, five days per week.
Why drive twenty-five km each way every day? Let us Giovanni's brothers, who have been fortunate enough to participate in normal activities at La Lucciola, explain why.
At La Lucciola activities begin and end. But not in a hurry, never with little time available. Because the activity is the tool, but the focus is always on the person. Better said, the person as part of a group. So it may happen that if someone gets hurt while building the Carnival Cart, then everything stops to allow the child to relive that moment, explain his or her fear and be reassured by the rest of the group. It may happen that if during a music session it turns out that the toilet has been filled with toilet paper, then the dance floor becomes a place where, together, the group tries to figure out what has happened and everyone can speak their mind. The group helps, the group empowers.
The boys were doing the “circle”, the beginning of every day at La Lucciola, in which they introduce themselves, say hallo and communicate. I see Giovanni standing up and I wonder where he is going. The operators do not stop him. Then I understand, surprised, that he was going to the bathroom. It was strange, because at home usually in these situations a little pool would have formed immediately on the couch or on the floor. A few weeks later he did it at home, too, he had found his way to the bathroom
I came to La Lucciola one day as they were teaching a song. But it was not just a song. It was a very engaging Hebrew song. Giovanni was so enthusiastic that he wanted to take the guitar home to keep singing the song. We also developed our own repertoire.
A little kid was having a medical examination the next day. He was frightened and La Lucciola helped him overcome his fears. Taking turns, the children played the role of the doctor or the patient. It was not a game, but a serious matter. Someone really put their fears out there, including my brother. I liked seeing how La Lucciola is a special school with materials designed to help in everyday life.
As a year-end trip, where would you bring a group of people with disabilities? La Lucciola decided to take them to a classical music concert taking place in a villa. They were all in the front lines and I was struck by their good behaviour and attention. Even Gio was very good and I can't deny I was very surprised.
Giovanni sleeps next to me and in the morning he is literally one with the mattress. Waking up is a hassle, getting up in time is almost impossible. There are two magic words, though, which often work: “Let's go get pizza” (but only on Saturdays) and “Let's go La Lucciola to see Davide, Riccardo and Antonio”
Stefano, 14, Davide's brother
Hi, I am Stefano, Davide N.'s brother and I wanted to write an opinion on my brother and his changes since attending La Lucciola. Before attending La Lucciola my brother was whimsical: in fact he had many crises, all the stones he found he put in his mouth, he would not play with me. Now I see that she's changed a lot, he looks for me, asks permission before doing something, and when we're out with my friends he's glad to be in our company, he even puts the phone down to stay with me and my friends. Thank you for all you are doing.
Alessio was born on 24 March 2000, and appeared in good health until 18 months, when everything changed. There was no interaction any more with everyone and anyone around him, he became selective with food (he only ate fish sticks and one yoghurt brand). This was the beginning of a difficult and painful period that culminated at three years of age in a chilling diagnosis of a very severe form of autism. Our little man did not understand what we say, he had a thousand fears, a thousand repetitive behaviours that have no meaning for anyone but him, he wept inconsolably even in the middle of the night, ran everywhere, did not have any sense of danger and got more and more complex to handle. We stayed at home all the time making it as safe as we could. The nursery from three to six years was an endless series of problems, weeping, fear, and phone calls to get him because the school could not handle him. At six years, as he was transitioning to elementary education, a good special education teacher told us about La Lucciola. The first visit happened in June 2006: it was a wonderful place both as far as the ambience and the therapy went. We realised it was the right place. So the battle began to have the Bologna Health Authority cover the service; it was not easy at all, but I must say that from the first year, given Alessio's remarkable progress, the programme was renewed without questioning.
So my “little boy” started at La Lucciola at a frequency of three days a week in October 2006. The other two days at school things worked out only if we were lucky enough to find good special education teachers. Therefore many ups and downs, no certainty, the usual early pick-up calls, for the inability to handle him.
At La Lucciola things just worked out, no crises or early pick up calls. Throughout these years, the practitioners at the Centre have supported Alessio in times of regression, as well as in times of improvement, they supported our family in times of doubt and discouragement and with their therapy they have made the improvements outnumber the regressions by far.
Today Alessio is still autistic, he sometimes has some issues, especially with puberty; he still has his own peculiar behaviours, but he is also a cheerful, smiling, very affectionate boy. He looks at you in the eyes, and despite being poor and inaccurate speaker, he makes perfect sense with gestures or in writing; he diet is hearty and diverse, he washes and dresses independently, cooks and does many things that give him much satisfaction. No more need for tranquillizers.
Clearly he still needs to be protected, he will never go out alone, but at least now he can go out with us and stay with friends, with joy and without big problems.
I still remember that until he was three, cutting his hair was a big problem. A razor instead of scissors, three people to hold him down, desperate screams. At the end of October 2006, about 15 days at La Lucciola, he was sitting quietly getting his hair cut with scissors, without the slightest problem. This change was no miracle: it was the product of a steady and relentless effort carried out by skilled practitioners. Thank you very much to all of you at La Lucciola and a special hug to Doc. Emma.
I am Riccardo's mother and my son has trichothiodystrophy and ADHAD. My son had his diagnosis at three three years. First, we noticed he was hyperactive with aggressive and self-injurious behaviours. Until the age of six, Riccardo only went to school. In the second year at school, despite the presence of two special education and a support teacher, the problems persisted and despite the fact that class teachers also followed him personally, there were not many improvements. He would hit his peers, disrupt the lessons, escape from the classroom and break school furniture. The Local Health Unit psychologist suggested La Lucciola one day per week. School problems persisted, but teachers and special ed practitioners, interacting with the Centre, received suggestions and tips to help the child. In the first year of middle school, which Riccardo had reached with so much effort, I met a special education teacher who every day would keep me 20 minutes to tell about my child's failures: reprimands, complaints, etc. were the evidence of the stories I had to hear. I often went home in tears. Riccardo began going to La Lucciola two days a week. I was often called up to school because they could not handle him. I, in turn, worked with children with disabilities in a school and this created great problems at work. Every morning I left home with the fear of being “hunted” by his teachers. The other middle school grades went better, also thanks to a younger support staff that had a more practical approach. In the first and second year of high school, despite the fact that teachers and the school, staff had made every effort to integrate Ricky with the class, there had been no intention of making him attend school with the other students. In two years he sent two teachers to the hospital. Just imagine the humiliations and the looks as we walked in the street, not to mention our life at home. In May of the Second High year, the Headmaster called me and said: “You either keep him at home or we'll suspend him”. I had Riccardo suspended and La Lucciola finally had him for five days a week. That was the best thing that could ever have happened to him. Now at the Centre Riccardo attends school lessons and wants to learn, he goes back home satisfied, all covered in dirt; his self esteem increased and now he is beginning to be more proactive instead of being aggressive. For two years he has only gone to the centre; unfortunately, in a few months, he will become an adult and will have to leave. The only regret is that I did not have Riccardo enrolled at La Lucciola five days a week since the first middle school year as I was suggested at the Centre. I could not give in to the idea that school integration was failing him. It would have saved a lot of pain and many humiliations. Since then, since the first day at La Lucciola, 10 years have gone. I wish I could start over and do better.
I am Davide's mom. I was desperate and didn't know how to help my child out of his bubble of isolation, then Davide's dad's cousin told be about Lucciola. I was very sceptical but I still remember, 7 years on, the day we went to the Centre to introduce Davide to Doc. Emma, Doc Bencivenni and Doc. Paola; I was very scared, but Davide immediately trusted them. And this was good enough for me.
I am Benedetta's mother. My daughter is a twenty-year-old girl who started attending La Lucciola at the age of nine, through the Neuropsychiatry Service of Modena, initially with a diagnosis of a “Mild mental delay” and later, of “Schizoaffective disorder of mixed type, affective syndrome with significant psychotic aspects”.
Benedetta, locked into herself as though she were in a deep dungeon, went to the Centre once a week; there, she spent two years doing eight hours a day for five days a week (in addition to staying at the Monzuno centre a week end per month). She had to drop out from middle school, even though it was private (a silent, orderly, environment with only two classes) and there was a willing special education teacher, who though could not respond to her needs.
For Benedetta, La Lucciola has been a safe, secure world, tailor made for her; there she pursued continuous knowledge of history, geography, science, design, art, mathematics, humanities, music, acting and physical education thanks to the guidance of practitioners who related to her not with with the intent of defining her, but opening her to the world.
At her side Benedetta had peers, younger children and older kids with whom to share essential human experiences: contact with objects usually found in a home, with plants grown to decorate and perfume the mansion, with vegetables to cook, with the Vineyard to crush the grapes and fill the barrels of the old vinegar with must, with the hens to collect eggs, with the sheep to shear wool, dye it and make felt objects, with clay to give it shapes, marvelling at the effect of heat in the over every time like the first time.
Within such a humble, humane and direct world, Benedetta has overcome the crises linked to puberty that had plunged her into even darker fears and anxieties.
Two years ago she turned 18 and was admitted to a day care centre; one day out of five, however, we decided to allow Benedetta to continue her journey with La Lucciola, despite the social worker warned us about the risk that in the future we would not be able to request the attendance five days a week at the day care centre due to the long waiting list.
La Lucciola taught Benedetta, like it always did the other children, that fatigue, fear and limits must be faced because they are part of our lives and become an opportunity for growth.
One thing has always hit me: while the school always called us immediately if our child was sick, at La Lucciola this did not happen. Doc. Lamacchia has always kept Benny until the end of the day because, she said, it was necessary to understand if it was a physical illness or whether it was psychosomatic problem, which had to be addressed differently.
I also remember that when the earthquake struck I rushed to the Centre, thinking that I had to pick her up immediately. Instead, the Doctor told me that Benny was safe and that was the right place for her to face the fear of what was happening. I went home and picked up Benedetta at the usual time.
Piera and Giuliano Ermini
Maria was born severely pre-term in 1996. Her diagnosis read autistic spectrum and severe cognitive delay. Then, in 2004 we became acquainted with Centro di Terapia La Lucciola through a friend. With the agreement of the Paediatric Neuropsychiatry Service of Bologna, Maria was able to attend La Lucciola for 5 days a week until the age of 18. Maria has reached a level of autonomy that allows her, though not verbally, to express her needs and desires and to work and keep focus for a sufficiently long period to perform the activities that she most likes. The new Centre, which now she frequents 4 days a week, has been very impressed with her abilities. That is why we asked for Maria to attend La Lucciola for one extra-day per week, as we were confident that the care for our daughter could and should not end at the age of eighteen. Too bad that in the future there are many small children who are missing (Maria had not turned 8 yet) the growth and development opportunities that La Lucciola can offer with its technically and scientifically skilled operators!
Antonio was born on 08/07/2000 and has been going to La Lucciola for a little over 10 years; I'm proud of him and of all the staff members who are very good and patient. At the beginning Antonio had many crises, he was impossible to manage. Moreover, at that time I was separating from my husband and Antonio, who had a special relationship with his father, did not realise what was happening, that he would no longer see her father as much as before. But thanks to La Lucciola, we managed to overcome everything, with so much collaboration and understanding. Today Antonio is a very independent boy and for a long time he had none of those crises he once had. Now, with puberty, they're starting again, but they tell me it's normal, and he will once again overcome this difficult moment. I thank all the people at La Lucciola for the great work they do for us.