«What our culture and society are missing is the understanding that disabled young people—autistic, Down syndrome, all of them—need to feel they have a role. They need to feel useful. To do real work, something on equal footing with everyone else. Nobody who is only being cared for feels part of society. They feel rejected instead. It's fine to celebrate, to have fun; my son loves that. But he also loves to show that he can do things. He likes to tidy up, help in the kitchen, take part in life the way others do. Otherwise he gets bored.»
So begins our conversation with Mariangela Lopizzo. She is a wife, mother of Carlo (who has autism spectrum disorder) and Chiara, a special education teacher at a middle school in Rome, and the sister of Ruggero, who died years ago and also had autism.
Over a long interview, she shared much about her family and life with Carlo. We had to choose among many topics she raised, and we hope to return to the rich reality she illuminated through her eyes as mother, sister, and teacher.
«Carlo is twenty-one now. He attends a hospitality institute because he loves cooking. He can stay until he turns twenty-three, if the school agrees. When he was small, every time we went to a restaurant he'd slip into the kitchen to watch—he was fascinated by how they made pizza. At home he was always in the kitchen helping me prepare things and clean up. I always tried to find him a cooking workshop. At first he went to the Locanda dei Girasoli. The chef suggested I bring him once or twice a week, with our caregiver, unpaid, to do some simple kitchen tasks. Then a consortium took over the place and fired everyone except two Down syndrome kids. They said they couldn't provide assistance. I tried to explain that wasn't what I was looking for. Now they only take Down syndrome kids from another hospitality school. Sometimes the Down syndrome associations feel ghettoizing to me—like the associations for the deaf or the blind. I understand it, but we should learn to be with everyone.
"Everyone needs to have a role in society and to feel useful"
After that I turned to community centers—they have a bad reputation, but they're very welcoming. Until last year he went once a week, always with his caregiver, to help prepare dinners. There was someone skilled in cooking who knew him and organized the work accordingly. Now she doesn't have fixed hours, the volunteers who fill in don't organize the work in advance, and I can't send Carlo anymore.
Now he follows a workshop with an occupational therapist—not at our house, otherwise it would lose value in his eyes.
Six years ago he started high school. We didn't hope for a certificate or diploma; we knew that was impossible. The first year was at an agricultural institute, but then we looked for a school with programs better suited to him. Since he wasn't interested in farming, I looked for a hospitality school. He had the right to choose a school he liked, just as his sister had. We finally found the right institute and organized his placement with our specialized assistant. Normally the special education teacher plans the work and the assistant helps when the teacher isn't there. For non-independent students, the assistant also helps with their needs. With Carlo, it's the other way around. His assistants often have degrees in psychopedagogy or are educators. His assistant, trained in ABA method, would instruct the special education teacher—who changed every year—on how to work with him.
Until he was three, Carlo was a normal child. He spoke, he sang, he followed stories. Then around four and a half, he began to withdraw into himself and to regress. We didn't understand what was happening. It seemed psychological because his younger sister was starting to talk at that time. After a long wait, they told me—Your son has DGS. What is that? Generalized developmental disorder. Yes, but what is it? Go to the office and they'll give you two referrals.
My son is still on a waiting list at those two places. No one ever called.
We started with speech therapy, but that wasn't what Carlo needed. He withdrew further into himself, told himself stories in his own way, developed repetitive behaviors, couldn't identify colors.
Before, he would ask me for things. He was curious, he drew things, he followed everything. Then he lost interest and began to regress, and we went from doctor to doctor, and none of them gave us any guidance. Psychiatrists least of all. Did he have to regress because of the course of his condition? Or because we didn't work with him early enough? I'll never know. It's the knife in my heart, always.
September is always a problem. We work and Carlo has no school. The staff haven't organized themselves yet, his sister is busy with her studies. Since Carlo adores his grandmother, they went together to a Fede e Luce retreat and it went wonderfully. My mother is eighty-seven and still goes to community events from the time of my brother Ruggero; for her it's like a second family. There were kids younger than Carlo at the retreat, but he's a big kid at heart and got along with them. He needs his peer group, but he really likes being with other people, outside of mom and dad. Even when his caregivers need to talk to me, he gets annoyed—he wants to be with them. When I insisted on it before, he'd act out. I taught him to say «leave me alone» instead of misbehaving, or to ask for help, which he wouldn't have done on his own. So when he starts to overwhelm, he asks for help and the problem dissolves.
When my brother was young, we were one of few families who took him out. An American girl staying with us, about thirty years ago, asked me—Don't disabled kids go out here? It was actually considered inappropriate to bring them to church, take them places; they were in the way, parents were ashamed, didn't know how to manage them.
Lately the attitude is changing. We see them more in schools, on the street. Of course, parents still don't come looking for them at home. While Carlo was in middle school, he was invited to parties, but in high school everyone goes their own way and it's harder to invite classmates. At school, though, they seek him out. They even got angry at the special education teacher for not being good enough. You need parents with the right sensitivity to include these kids. It doesn't happen naturally.
When Carlo finishes school, day centers are supposed to be his destination, but the waiting lists are enormous. We've been through this with my brother and we really want to avoid psychiatric drugs, the idea of just warehousing him, long-term decline. My mother had to sign papers saying my brother would do lots of activities. In reality, he did nothing. But she had to sign them, for fear they'd throw him out.
With the parent association we've belonged to for years, we're asking that our young people, according to law 328/2000, have a customized plan agreed on by all the institutions involved: school, health authority, city government. Each person gets a plan designed for them, to help them not get worse, not stagnate, and not cost society extra money.
We're asking for part of the money earmarked for day centers, but it's hard to get the associations to agree. Physical assistance is necessary, yes, but mental assistance—mere caretaking—diminishes the person and doesn't help them. You have to try to make the person an agent of their own life, giving them responsibility for what they do. When Carlo cuts potatoes and carrots, he knows we'll eat them together in minestrone afterward. Yet so many people say—Poor thing, why make him work? Carlo doesn't speak partly because he doesn't need to; a sweet look is enough. They don't even make him ask for things or say thank you, and if I push it, I seem mean.
We'd like to create an integrated cooperative where the young people's role is productive—an agriturismo, with farm work, food service, cleaning. We have no illusions they'll do it alone. They'll need accompaniment, but at least they won't be only cared for.
Right now Carlo's future is a gamble. I don't care about him living in a nice villa. You have to integrate into your neighborhood, live with others, learn to be with others.
And others have to be able to welcome you.»
Mariangela Lopizzo, 2017