Four Stories
Those who have raised a child with behavioral disorders, who have shared their life with a psychotic teenager, know. Those who have not lived through this cannot know. Nothing can replace experience. That said, Ombre e Luci offers these four accounts, told by the people who lived them, without embellishment or stylistic flourish. With some emotional participation and a bit of imagination, one can "read" what reality lies behind plain, ordinary words and phrases. We believe this is the necessary starting point for the journey through the problems surrounding and embedded in childhood psychosis that this issue of Ombre e Luci presents to you.
Conveying to others, through these few lines, the anguish, the hopes, the defeats, the victories that, like milestones, have marked and continue to mark our life for twenty years—this is truly difficult. Raising a handicapped child means facing, day after day, problems that can only be overcome through harmony between spouses and mutual support.
The joy at the birth of Oliviero, our firstborn, began to fade after just six months, when the first signs of brain damage appeared: myoclonus—involuntary muscle contractions striking rhythmically one or more muscles—and seizures of an epileptic nature. For us, young and inexperienced, began the anxious search for the "best" that medical science of those times could offer. Electroencephalographic tests followed frantically, and the clinical opinions we received from various "luminaries," not always in agreement, came with calming and hypnotic therapies. No one advised us during that period—those who should have—on how to shield our child from the traumatic psychological impact of our own anguish and all the clinical "manipulations" that tests and therapies required.
After a year in Italy, with no clinical progress, an increasingly severe seizure disorder, and psychomotor development arrested at six months, we decided to hospitalize Oliviero at the pediatric clinic of the Cantonal Hospital in Zurich. It was a success!
After a few days of qualified clinical analysis, followed by a trial of hydrocortisone therapy and subsequently pneumoencephalography, every epileptic manifestation vanished forever—and Oliviero's first smile made us weep with joy.
Why had we not been able to achieve the same result before?
The joy at the birth of our firstborn began to fade after just six months
The joy at the birth of our firstborn began to fade after just six monthsThe joy of Oliviero's "clinical" recovery, unfortunately, was short-lived. The period of suffering he had endured, the "manipulations" inflicted by the outside world on account of his condition, had marked him for life. Rapid motor development was accompanied by parallel psychological development. In the child there had taken root autistic psychoses with manifestations of instability and stereotypy.
For us began the search for a psycho-medical-pedagogical organization that could give Oliviero the best opportunities for psychological and social recovery. We soon discovered how deficient Italian institutions were in this delicate social task, and we struggled for years through the maze of "special schools."
We too fell into the trap of paramedical charlatans; but we freed ourselves quickly, justifying our attempt simply as an attempt that every parent finds difficult to avoid.
The law on integrating handicapped children into normal school structures, however positive in conception, confronted us with a harsh reality: the discrimination of the handicapped that the law sought to eliminate created another form of discrimination within the category itself. The most vulnerable children—those most in need of specialized care—were automatically excluded because of the near-total absence of adequate psycho-medical-pedagogical support to complement the teaching staff, support that would have made schooling possible.
We came to realize that in our country, alongside a qualified psycho-medical corps, there exists no professional figure of the specialized educator. To our knowledge, Italy has no institutes that, as in other European countries, professionally prepare specialized educators in both theory and practice.
Once again we found ourselves forced to seek abroad the possibility of giving Oliviero hope for social recovery—a social recovery that became ever more urgent as the years passed and his instability and behavioral disorders worsened, disorders that the various activities in "special schools" had failed to "reeducate" and manage.
Our respective professional circumstances allowed us to consider placing Oliviero abroad. The decision to send our son away from home was painful, but necessary.
The balance of the family was at stake. The birth of two other children, while giving us parents temporary relief from Oliviero's primary problems and allowing us to recover some of our depleted emotional reserves, brought new responsibilities. The presence of an autistic child in a family creates rhythms of life of a psychotic character that can barely be interrupted. It becomes a trial for parents to reconcile their feelings with proper reeducative action. Oliviero's instability and restlessness had reached the limits of family life, convincing us of the necessity of placing him in a different educational setting.
It was Switzerland, once again, that offered us the educational structure capable of combining sound education with a family-like living environment.
For eight years now, Oliviero has been placed in an anthroposophical organization (based on Rudolf Steiner's principles) that, through its structures, its principles, and its goals directed toward the social recovery of the handicapped, and through the dedication of those who work as educators there, has given our son a degree of social recovery that allows us to face the future with greater peace of mind.
—by Vincenzo and Irene Ruisi, 1984
Four Stories
My Son, I Don't Believe by Delia Mitolo
Always Rejected by Lina Cusimano
The Law on Integration by Vincenzo and Irene Ruisi
Rehabilitation by L.N