We were living in Bari in 1986 when we read an article in Ombre e Luci by Mariangela and Nicole about the Lega del Filo d'Oro in Osimo. It moved us deeply.
Manuela, our daughter, was born with severe handicaps. She cannot see, cannot speak, and walks only with support. She was, as we say, a "difficult" child. She was eleven at the time.
Our life was already complicated—as it is for many families who read this magazine—and it was growing harder. By then we had two younger sons, Carlo and Matteo, still very small and demanding attention, while Manuela's behavioral crises were becoming more frequent and severe.
Because she could not speak and had no other way to communicate her needs, she screamed to get our attention. Perhaps this was also her way of responding to the presence of her two brothers—a awareness that she was no longer alone, that she had to share her parents' love. She was, in a word, wearing us down. We were enslaved to her needs and to her tantrums, which were no different from any child's. Beyond this, her life had no rhythm. She would fall asleep during the day, calm because we were all around her, then wake at night and begin to scream and hurt herself, striking herself, and we had to intervene urgently in the middle of the night. To hear a child screaming in a sleeping city is a shattering thing. The neighbors sometimes thought we were using violence on our children. We suffered deeply because of this misunderstanding. More than once we were asked to leave our apartment and move to the country, where we would disturb no one.
We had reached the limit of our strength. We faced another problem too: our younger sons, accustomed to Manuela's company, had begun to imitate her violent self-harm. They were doing violence to themselves in imitation of their older sister.
The social resources available to us could not provide the specialized, technical, or medical support our daughter needed. And the facility we had dealt with in Rome was not—and still is not—equipped to work with children as multiply disabled and blind as Manuela.
As I said, by a series of fortunate coincidences (when you believe you have reached the end of your rope, there is always someone who extends a hand), we telephoned the Lega del Filo d'Oro in June 1986 and were seen almost immediately. To be honest, we went to Osimo without expecting much. We had seen other places—more like labor camps than rehabilitation schools.
The moment we stepped inside the institute, we had to change our minds. The environment was serene, the staff courteous, available, highly professional. One detail struck us: all the doors were open. That alone gave us hope. The specialists examined our daughter carefully, assessing the degree of her handicap and determining what goals she might reach through appropriate, specialized treatment.
They told us that "work could be done" with our daughter, though they said it would have been better had we brought her a few years earlier.
The problem was that the institute could house only about twenty children as full-time residents. Other children attended in the morning and went home in the evening. The limit on places existed because rehabilitation efforts only succeed when each child has two teachers dedicated to them.
Manuela, at center, with her two brothers; on either side, her parents Brunella and Massimo D'Amico, at the wedding celebration of two friends.
By good fortune, we were called only a month later. They asked if we were willing to begin treatment in September, when a place would open. Yes, we said. My wife stayed with Manuela for a couple of weeks, working alongside the staff who cared for her, and most importantly, to see how she would be looked after.
We saw results almost at once. Manuela had been treated by multiple institutions since birth, by different people in each, because we had never found a facility equipped to work with blind children with multiple disabilities. She arrived at the institute in a shocking condition. By then she ate almost nothing. To feed her we had to hold her and give her only liquids—purées and yogurt—even though she knew how to chew.
The surprise came at Christmas that same year. We had visited her only every two weeks, on weekends, as the rules allowed. At Christmas, Manuela was eating by herself, everything, sitting at the table with her own spoon.
They had trained her to eat everything using this method: if she refused something, they offered it again later. If she refused it a second time, they removed it from her diet. As for behavior, she became a different child. All those outbursts, despite years of care, had vanished as if by magic. The Lega del Filo d'Oro was not just a school for Manuela. It was a school for us as well. The skills Manuela acquired with great difficulty during her time at the institute had to be practiced during her holidays with us, or they would be lost quickly. So my wife learned the new exercises regularly and practiced them at home.
Her relationship with her brothers improved greatly too. At first, our younger sons—now seven and ten—were jealous because they saw how much attention we gave their sister. But when we brought Manuela to Osimo, Carlo, the older one, was distressed for several days. He thought we were taking her away to make more room for him and felt responsible for that.
Now her attitude toward them has changed entirely. At first she could barely touch them. Now, whenever she meets them, she embraces them as if they were her dolls. She has begun to have a rhythm to her life. She has come out of passivity. She is encouraged to improve and to learn. As a result, her relationship with her brothers is entirely transformed.
Now Manuela walks a few steps alone. She holds herself better. She climbs stairs. She has learned to dress and wash herself. She accomplishes a series of daily gestures that are deeply gratifying and have brought peace to her spirit.
The key to success lies in this: at the Lega del Filo d'Oro, every child who is recognized as having the capacity and need to learn—even when their needs appear similar to those of others—receives a specific program. It is detailed, carefully studied and verified dozens of times, designed for that child alone.
Our daughter is beginning to form mental patterns. We say she is beginning to "understand," though it is hard to know how much. In her own way she is happy. She knows, without doubt, that she is loved. She lives a life that for her we might call "normal"—and certainly better than what we could offer at home, where she was suffocated by our love and frustrated by our inability to give her what she truly needed.
Manuela has made incredible progress at the Lega del Filo d'Oro... To feed her we had to hold her and give her only liquids... Now she eats by herself, everything, sitting at the table.
Manuela has made incredible progress at the Lega del Filo d'Oro... To feed her we had to hold her and give her only liquids... Now she eats by herself, everything, sitting at the table.
Now they are teaching her even more complex things—how to discriminate between choices. They want to teach her to choose: whether she prefers to drink or eat, to walk or rest, to sleep or play. These are complicated lessons. But I am convinced that in time we will see further progress.
The progress the Lega del Filo d'Oro has achieved with Manuela stems not only from the scientifically excellent preparation the institute is recognized for worldwide, but from three other elements: infinite patience, genuine availability, and great love for these children.
These workers are truly extraordinary, exceptional people.
How long will Manuela stay? Only God knows. The Lega del Filo d'Oro keeps children as long as they are still learning, until they have reached the maximum level their capacity allows.
If Manuela were to become tomorrow the young woman we hope for, she will be welcome. It is always a matter of faith and...
- Massimo D'Amico, 1992
World Conference on "Deaf-Blindness"
The Lega del Filo d'Oro, in collaboration with the Permanent Committee for Deaf-Blind Services, an organism of the World Union of the Blind, announces that the Fifth World Conference "Helen Keller" will be held in Italy (in a location in the Marche region) in the last week of September 1993.
Conference title:
"Quality of Life for Deaf-Blind Persons".
Why Manuela Could Not Stay Home
Manuela's father spoke of the human values—patience, availability, and love—that the staff of this institute embodies, and also their high level of skill.
We cannot lay out every aspect of that skill here, but we want to highlight two:
— on one hand, the completeness of care: from waking to sleeping, the child is never left alone. (This allows, among other things, the elimination of repetitive behaviors and self-injurious acts.)
— on the other, positive reinforcement (immediate reward of positive behavior with something the child is known to enjoy). This creates the first bridge of communication and breaks through the wall behind which the child had completely withdrawn and become "psychotic".
It is easy to see how these two rehabilitation approaches—so demanding and completely absorbing—cannot be carried out in the normal life of a family or in a neighborhood school.
For anyone interested in learning more, see issue 1, 1986 of Ombre e Luci, "He Sees, Hears, Speaks Through His Hands." For further information, contact:
"LEGA DEL FILO D'ORO - Via Montecerno, 1 - 60027 OSIMO (AN) - Tel. 071/7131202 - Milan office: Via Carlo Poma, 48 - 20129 Milano - Tel. 02/743405.