Four Stories
If you have raised a child with behavioral disorders, if you have shared your life with a psychotic teenager, you know. If you have not lived through this, you cannot know. Nothing can substitute for experience. With that said, Ombre e Luci offers these four accounts, told by the people who lived them, without flourish or stylistic pretense. With a little emotional engagement and a bit of imagination, you can read between the lines—can grasp what reality lies beneath very plain, ordinary words. This seems to us the necessary starting point for the journey through the problems surrounding and within childhood psychosis that this issue of Ombre e Luci invites you to take.
My daughter E., now fifteen, was born premature (2.2 pounds). Transported from the clinic to the Bambino Gesù Hospital with no special precautions, she spent a month in an incubator and a month in a crib, where she reached 6.6 pounds.
After an initial difficulty with nursing, her physical development proceeded fairly regularly (as did teething, which began at seven and a half months), but the stages of neurological development were far less evident.
I already had two other children, and I kept pressing the pediatrician: many things worried me—delayed walking, frequent fevers, no sounds or grasping, no response to communication.
When I got only vague reassurances, I consulted another pediatrician. Then another. Then another still.
They prescribed injections and stimulant and sedative medications at the same time, X-rays, an eye exam, an EEG. Time passed. At two, she walked, but on her tiptoes, uncoordinated, unable to bend down or climb stairs.
They advised us to enroll her at a rehabilitation center. At two and a half, she was accepted at the AIAS center on Via Vittor Pisani, where finally the doctors and staff understood what we were dealing with. For the first time, we felt heard. The doctors welcomed us with kindness and patience, invited us to open up, gave us suggestions. We attended meetings. We met other parents.
We tried other treatments without success, but we also attempted rehabilitation.
They said it took patience, that the beginning was always hard. I myself am a teacher, and I watched my life grow more complicated day after day.
They said it took patience, that the beginning was always hard. I myself am a teacher, and I watched my life grow more complicated day after day.Then came the push to "decentralize." The rehabilitation centers came under attack. "Rehabilitation should happen in schools," people said. The center staff were absorbed into city districts, and teachers returned to schools. Some districts ended up with small teams of specialists. Others did not.
My daughter was eight when I enrolled her at the elementary school in Piazzale degli Eroi. She was placed in a first-grade class, but she could not start at the beginning of the year with the other children because "the assistant hasn't been assigned yet"—and also because "it's better if the other children are prepared first." When she finally started, the girl was not kept in the classroom. She walked the hallway or sat in the aide's office.
At dismissal the assistant waited for me in a rush (there was no bus service). On the third day, it rained. The assistants had to go "sign in" at Via del Falco, at the district office, then make their way to school. There were no direct routes, and the assistants arrived whenever they arrived. They said it took patience, that the beginning was always hard. I myself am a teacher, and I watched my life grow more complicated day after day.
The AIAS centers began to reconstitute themselves with makeshift staff, good intentions, and all the difficulties that come with new beginnings.
My daughter returned to the AIAS center at Forte Antenne. Doctors came and went, unfamiliar with the patients' histories, having to restart contact with families. They would last six months or a year, then leave. Many clinical files were lost. Still, with ups and downs, the center resumed operation. They launched new initiatives—inviting Pierre Vajjer for a week-long course, for instance, and organizing swimming therapy in rotation at S. Croce in Gerusalemme, where a Red Cross expert volunteered her skilled, loving care for rehabilitation sessions. They took children to performances. They organized summer camps every year.
Then in September 1979 the troubles began again. The AIAS center in S. Paolo was converted into a full-time school. The Nido Verde likewise. The Via Vittor Pisani center was transferred to the city government (UTR). The Forte Antenne center fell into deeper crisis by the day. Staff stopped receiving regular paychecks. Strikes multiplied. Food, buses, then even the telephone disappeared. Staff and some families occupied the center in protest.
I sought a new placement for my daughter in public school mid-year, but this time it was too late. The doctor at Via Vittor Pisani told me it would only be possible the following school year.
In November 1979, the Forte Antenne center closed for good.
Some families placed their children in institutions. Others kept them home. Those who managed to get their children into schools found themselves drowning in problems, misunderstandings, and exhaustion.
Others searched for a new center or day program. After many fruitless attempts, my daughter was able to enroll at the Vaclav Vojta Center in February 1980. She still attends there. It is open year-round—even in summer—though it only organizes seaside stays for children who are self-sufficient.
—by L.N., 1984
Four Stories
My Son, I Do Not Believe by Delia Mitolo
He Was Always Refused by Lina Cusimano
The Law on Integration by Vincenzo and Irene Ruisi
Rehabilitation by L.N.