After reading "Who Would I Be If I Could Be?", we felt drawn to speak with friends who are living through this moment of life—so important, so difficult. We were able to do so thanks to Titti, a longtime friend, mother of Daniele, a fine young man with Down syndrome, age 26.
The Mother
"To me, Daniele seems quite capable now. He can stay home alone for stretches without trouble. He knows how to cook—if he's on his own, he'll make himself a good plate of spaghetti and a well-done steak. He helps around the house with cleaning, and I'm teaching him to iron. I want him to be able to do everything he needs to live on his own.
He went to public school through eighth grade and got his diploma. He attended hotel school, which seemed suited to his abilities, but after a year something happened—he felt uncomfortable there (not taken seriously? set aside by classmates? not valued by teachers?). In any case, he had a real little crisis and refused to go back. I went along with it because he seemed genuinely distressed, and I'd realized that work no longer interested him.
Today he works in an office where they develop computer programs. He has a permanent contract and does well. He doesn't say much about what he does—now it seems he's rewriting and correcting a text he already transcribed once. He gets in at nine and leaves at four.
I've always tried to get him to do lots of things. He once knew some languages fairly well, but he's neglecting them now. He goes to music school twice a week, and lately to sailing school as well.
He spends time with many friends, not one-on-one but in groups. He's part of the Sant'Egidio Community and a Faith and Light group. With these groups he does various activities, took trips for a few days even without me. He prefers these companions to groups of disabled young people—which is actually why he left the autonomy group at the Down Syndrome Association."
That's all very good. But haven't you sensed particular tensions in him over recent years, or even now—moments of rebellion against you, against his job, against his disability?
Of course problems aren't lacking. Now he shows real frustration when I don't give him what he really wants. He'd like to go to Calabria alone by train or plane to visit relatives. He wants to travel to other cities where we don't know anyone, just for the pleasure of going solo, seeing new things. But I'm afraid to let him go alone. He can manage fairly well, knows how to ask for directions on buses and streets, but... I'm not ready to let him go. I'm always worried he might get into trouble.
He's very drawn to pretty girls. He'd like to be with them all the time, go out with them. He used to refuse girls with disabilities like his, now he's more open to them. But I don't think he's ever truly been in love. He never takes the initiative to call someone, to invite her out. He waits to be called, or wants me to organize the meeting, the walk. And that's another problem. I feel I may have done too much for my son in this regard. I organized, arranged friendships, found activities—and he got used to having all of this without lifting a finger.
Daniele has always been quick and intelligent, even among boys with Down syndrome. He reads and writes well, speaks appropriately in any situation, even took part in a film without particular problems. He's ready in any group activity or game, knows how to help others. Paradoxically, this is where many of his problems come from. Why can't he do everything like the others? Why can't he have a driver's license? Or take long trips alone? How will he accept these and other limits? He also tends to have an imperfect sense of himself, to overestimate his abilities given the easy successes he's had compared to other boys with intellectual disabilities."
Daniele
He greeted me with a smile and kindness. He told me many things while Titti was busy elsewhere in the house. He spoke about his schooling: after middle school, four years at a technical school, then a science-language high school (the school where Titti teaches). That's where he learned to understand and speak English and French. Then hotel school with classmates who weren't so nice and gave him problems, and now computers. He likes this job; some colleagues are his friends. But that's not all Daniele wants in his life. There are distant, difficult dreams—the most beautiful dreams, like becoming an actor or a drummer in an important band. And there are easier dreams, within reach: going to Calabria to visit cousins, swimming with them for hours like fish, playing music with friends from Faith and Light when they get together for a day. And then the driver's license... when can I have it? Driving is dangerous; you can put other people's lives at risk... better to wait.
Daniele, you're a thoughtful young man—well done. But do you ever feel a bit sad? Do you ever want something you can't have?
Yes, Daniele wants something impossible, like everyone does: he wishes his grandparents were still in the house—they cared for him so much—and that his father was there. His father died when Daniele was very small. He came home from a school trip, and his mother told him that Dad wasn't there anymore. Being just two in the house is a bit sad. That's why it's so important to organize dinners with friends. Then there are group outings, pizzeria dinners, movies.
Daniele, as we all grow up, we try to change something about ourselves. What are your goals?
Well, it seems to me I have a good character, I know how to do lots of things, but I'd like to stop moving my hands so much, stop touching my hair and forehead when I talk. It's not nice, I know—I need to work on that. And I shouldn't be afraid of the phone. I should be the one calling friends, but...
Why does it seem so hard to call a friend on the phone, to invite a girl out?
They always have so much going on, so many things to do. I'm afraid they can't come out, that they'll say to me: 'Not today, I can't...'
edited by Tea Cabras, 2002
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