When Maria's body began to change visibly, I explained to her that she, like her older sisters before her, was becoming a young woman. But because of her intellectual disability—Maria has Down syndrome—she rejected these physical changes and decided how she would behave in response.
Those of us in the family feel responsible during so many moments of daily life: bathing, sleep, physical affection, and more recently, sexual attraction. The first difficulty, without question, is that Maria has never shown any sense of shame, even as a young child.
Whenever she could slip out of our sight, she would race from room to room completely naked. Even now she has no sense of modesty at all—but she does know that rules exist and must be followed. No one walks around the house unclothed; no one enters another's room without knocking. I knock on her bedroom door, and that matters to her.
We keep telling her that she is grown now, and that her brothers, her father, and any boy should not see her naked. Things improve slowly, but progress is far from steady. Maria faces the same struggle when it comes to expressing her feelings. She has no sense of what should remain private. We explain that certain feelings belong to one's inner world, that we shouldn't speak of them openly with everyone—but she cannot grasp why.
Maria is naturally drawn to boys her own age, and to fathers too. So we have to explain to people we know how to behave around her, how to keep a certain distance—and it is never easy. Her joy in living, her uninhibited shows of affection, bring real moments of happiness to everyone who knows her. They have no desire to hold her back.
We try to teach her at least to control her gestures. We use videos and DVDs to show her how people behave in real life: we embrace gently, we don't greet everyone with the same burst of feeling, we shake hands with people we know only slightly, we don't propose marriage to every boy we like.
There are so many things to repeat to Maria again and again—even if it is the seventy-seventh time—without losing heart. With her, it works this way: whatever is not explicitly forbidden is permitted. And that makes her education all the harder.
Jean and Claire Santagostini, 2009
(from Ombres et Lumière no. 169)