Paolo
Paolo is nine years old and does not speak. I am certain he never will, though we often hear the sound of his voice. Words mean nothing to him the way images and pictures do. He seems to have no access to the tools of communication, to abstraction, and therefore no sense of what might happen next. Yet with enormous work and energy, we manage to build small habits of independence, a few verbal responses. Enormous victories, really. He needs constant help and constant watching because he gets into all kinds of trouble. He is mesmerized by water—he jumps, runs, darts in every direction. He cannot play, but he loves watching things that glow and make noise, cartoons. Still, we communicate with Paolo constantly. He adores music and hums melodies back to us. When we touch him, he lets us hold his hand to stroke, he squeezes our arm, he pinches our skin. He smiles, and his smile is infectious. You can tell immediately that he is happy. He vocalizes. He is curious. He has incredible energy. Paolo generally looks cheerful, except when he is distressed—then he bites himself and pulls his hair. By nature he is fearful and would never dream of bothering anyone. He is highly sensitive to the way we approach him. His apparent indifference can intimidate; you might think he does not want to be touched. But if you engage with him without trying to catch his eye, without giving him time to touch you, without singing or speaking—he suffers from loneliness. He is on the verge of tears. Some people are drawn to reach toward him, willing to bother him gently, going out of their way for one glance, one smile. Everyone who cares for him this way carries the mark of it for a long time.What Can We Expect from Him?
For a long time I have asked myself what Paolo's life means. It has meaning for me because it makes me grow along a difficult but deeply human path. But does anyone's life have meaning only because it serves others? Paolo is not a "healing child" sent by God for our salvation. So what is the meaning of Paolo's life for Paolo himself? What path is he called to walk? Paolo feels that we love him, I think. But how can he love? As docilely as an animal? His reactions are always tied to seeking comfort. He is good if he feels well. He is impossible if something is wrong. I have never seen him show compassion or understanding for another person. That is one of the central traits of his autism. Everything revolves around him. Sometimes I feel like his servant when he makes me get up ten times a night without seeming to understand that he is causing me suffering. How do I lead him onto a path of charity, then? It is impossible. That word means nothing to him. Reality is absorbed but never given back or shared. There is nothing to ask for on that front.How Do We Nourish His Inner Life?
How do you pray without language? How do you encounter God's Word when you understand neither words nor images? Nothing bothers me more than when someone sees Paolo smile during a song and wants to believe he is having a mystical experience. No—he smiled at a melody he knows, or a particular sound. It is also true that it is moving to see him smile sometimes when we sing an Ave Maria, surely because it reminds him of a happy moment. Why not simply admit the terrible reality of his disability—that it cuts him off from what makes us human: our capacity for charity, our search for God? Granted that he cannot participate in these things, that he has no awareness of what he has lost—does that make his life worth less than another's? Would his life be less precious to God than that of a saint?What Is the Point?
We stopped bringing Paolo to Mass long ago. Not without guilt. The truth is he behaves completely inappropriately: does it make sense to drink from the holy water font, to run ceaselessly, to shout because he likes the sound his voice makes, to hunt for pastries hidden in the confessional? And he shows no interest in anything that happens during Mass. His presence makes it impossible for everyone else to pray. The parish would have to know him better to accept him, certainly. But we parents are exhausted from explaining, from justifying his behavior, from sustaining this constant struggle. I confess, too, that having Paolo at Mass is too overwhelming for me. He goes with friends from "Open Arms" and to our Faith and Light gatherings. At home, Paolo is absent from the moment we try to make together for family prayer. It is already hard with the little ones (though apparently it is hard with the older ones too!), so with Paolo in the middle everything falls apart. Still, I often put on a CD of beautiful hymns in his room and we sing with whoever is there. At Faith and Light meetings, I love the prayer time most—a quiet moment when others watch my younger children and I hold Paolo sitting between my legs. It is a bit awkward physically but it is brief, very simple, and we are all together.The Sacraments
Paolo is baptized. And unless I believe he is a being filled with God through the miracle of his disability(!), why couldn't he receive his First Communion? Is it enough to refuse him simply because he understands nothing of what he does, and will never understand, no matter how hard we try? After all, God is not a concept but a person. So it seems to me that Communion is precisely the only way—not so that he might understand, but so that he might meet Christ. What should I make of something a priest said to me once, something that did comfort me: "God does not need sacraments to meet whom he chooses. He acts as he sees fit, far beyond the sacraments." But today the question of Communion haunts me. Would it be a failure of faith in God's ability to reach Paolo? Another priest told me, "If he receives First Communion, then he will have to communicate often!" But why, if he does not sin? Could not a single Communion nourish his entire life? Or once a year, at Easter perhaps? And why wait for Confirmation? Doesn't he need the Holy Spirit more than others, to help him grow? That sacrament sending us into the world as witnesses to Christ—does it not make sense for a child like Paolo? Why do the Orthodox give these sacraments together, and why is it so complicated to do this for disabled children in the Catholic Church? by Maria Amelia, Paolo's motherArticle translated from Ombres et Lumière, no. 172