We're approaching sixty. Teresa is about to turn twenty-nine.
We came to Rome in 1964 with our four children. Three of them left home, one after another. They return often, they phone their sister, they write from one corner of the world or another—but who stays at home with Mom and Dad? Teresa does.
At first glance, Teresa lives the normal life of a young woman. She has been fortunate: she was able to attend a vocational training course open to everyone, complete work placements in a hospital and in childcare centers, and secure a job. She works as a porter (1) in the neonatology department at San Giovanni Hospital. She chose to work in the hospital rather than in a childcare center—and she got what she wanted. She is considered an employee, even though, in practice, certain small accommodations have been made.
She earns the same salary as everyone else. She keeps the same work schedule as her colleagues. She had to adapt to the workplace: waking up early in the morning, being punctual, remembering to clock in, completing assigned tasks, and so on.
For its part, the workplace has observed her behavior and assessed her abilities. It turned out that morning work is far more productive for her than afternoon work. In the mornings there is more to do, and two colleagues work with her, and the head nurse is more present. The work is always the same, and by now Teresa knows it well. Afternoon work, by contrast, is variable and requires greater knowledge of the hospital and more initiative. Teresa felt disoriented and anxious, and she refused to do tasks she didn't know well. So instead of working like the other porters—two weeks in the morning and one in the afternoon—Teresa works only in the mornings. Her colleagues don't see this as a privilege, but it allows her to plan regular after-work activities.
The head nurse was skilled at assigning tasks suited to Teresa's abilities and preferences, using materials adapted to her small hands. She cleans and tidies the doctor's on-call room, cleans the nursery, and tends to a few cribs. On certain days she helps a colleague organize the infants' laundry. These tasks are broken up by rest periods and a snack. Certainly, when she was interning as a childcare assistant, she cleaned and dressed the newborns; after being hired, that was no longer possible, even though the unit head would have liked it—but within the hospital's rigid system it seemed almost impossible. Teresa, on one hand, feels reassured doing the same task she knows well, but on the other hand, she sometimes expresses a desire to do something new where she could show other abilities.
She chose the hospital over the childcare center for two reasons: she feels more at ease with newborns than with one- or two-year-olds who are already "argumentative"; besides, a childcare center is an almost entirely female world. At the hospital she meets other staff—young doctors. Everyone is courteous and attentive with her, and this matters greatly to her. It lets her dream. And often Teresa dreams too much, withdraws into herself the better to dream alone, both during her rest breaks at the hospital and at home.
The Battle Never Ends
Her colleagues are kind, but sometimes they don't know how to respond to Teresa's double demand. She repeats: "I'm an adult, I'm twenty-eight, I do as I please, I'm like everyone else" (sic)—and at the same time this is an implicit plea for affection and protection. Now and then, especially when she's tired, tensions arise.
Teresa's attitude toward work has changed. Where once there was enjoyment in those early days—work as play and friendship with colleagues—she has moved toward a more realistic, mature view: work is often constraining, but it confers adult social status that makes her no different from anyone else. In short, this integration into the working world has undoubtedly been good for Teresa. In a family environment or one that was too protective, she could never have understood that life is hard for everyone, that everyone has their own problems, that "work is tiring."
So Teresa matures gradually, building her own philosophy. She often says: "Everyone has problems, everyone can make mistakes."
So Teresa matures gradually, building her own philosophy. She often says: "Everyone has problems, everyone can make mistakes."So Teresa matures gradually, building her own philosophy. She often says: "Everyone has problems, everyone can make mistakes."
Every day Teresa comes home tired from the hospital. She eats little—she's careful about her weight and not greedy (as is said of all people with trisomy 21).
But certainly she has the "laziness" typical of mongoloid individuals (even if we don't know exactly what that is). Teresa needs constant encouragement, support, and recognition. That said, she isn't aimless; she is very willing. When she has the motivation, she can overcome many obstacles of every kind, even intellectual ones.
To prevent her from retreating into fantasy, we make sure Teresa has a specific activity each afternoon. Two days a week she goes swimming. She loves it, and there's always something pleasant about swimming under the watchful eye of a greatly admired instructor.
One afternoon a week she attends a ceramics workshop where an instructor—and it's always good to have a sympathetic teacher—shows a small group how to create objects. The morning work is useful but not creative.
Another day, a wonderful teacher—a friend—tutors her. Teresa made a great effort to complete the "150 Hours" program and later to earn her childcare assistant diploma. But soon much of that knowledge, perhaps acquired too quickly for her, seemed to fade. With great patience, courage, and perseverance, her friend Luisa teaches and encourages her to express herself. The main goal of these lessons is to enable her to read a passage on her own, understand it, and tell others what it's about, both in writing and aloud. We believe this is tremendously important for developing her personality and her relationships with others.
With us, Teresa refuses any schoolwork-type exercises except for two. Each month we go over her bank statements together: her salary, the expenses she has paid by check. Only after she began receiving a paycheck did she start to grasp the concepts of one hundred thousand, of a million—and now she can follow how much she earns each month, how much she spends, how much she earns annually, what swimming and ceramics cost. Because she is not responsive to abstract concepts, we have to anchor them to the concrete, and ideally to the concrete that interests her. We do one other exercise together: we read a few pages, and then she dictates them to me—I'm not very fluent in Italian. It's moving to see the care she takes in pronouncing each word, in making the accents and double letters heard, just like a teacher at school.
For all of us, school and university are privileged times because every day we meet classmates and friends. The working world is entirely different: everyone has their own interests, their own friends. Teresa cannot expect to be friends with all her colleagues, with all the doctors—and that has been very hard for her to accept!
She misses those large groups of friends. Besides, she also had to step away from the scout group, which gave her so much.
She has friends, but she doesn't see them every day. By now Teresa has understood and accepted that she will not marry, because she is well aware that she is not able to manage a family, to commit for a whole lifetime. (Isn't marriage about that, too?)
Even now, she sometimes says "When I get married!" but she doesn't really believe it. Yet there is in her a desperate search for someone who will love her... "someone who would protect me..." and she writes down the names of those she dreams about. We find them on touching little notes certain evenings when she comes home from visiting friends. Psychologists we consulted said: "That's fine, it's normal; it's perfect that she's able to express herself. She's like all the young women her age who live with their parents!"
But what is the answer to this frustration? I believe she will never have a partner of her own. So then—many friends, both male and female... and time passes. By her forties she will already be in menopause, and she will slowly grow old. We try to make ourselves strong enough to support her through that future too.
It's true that we fight to help our children progress, to move them forward. Defeat or victory, the battle never ends; each advance solves certain difficulties and opens the door to other problems. What matters is not to lose hope, not to lose faith in life... and may God help us.
(1) Despite her diploma as "Childcare Assistant," her appointment was made by direct hire in the Year of the Handicapped (1981) as "Assistant for Cleaning and Wardrobe."
— Marta and Jean Buffaria, 1987