Maria's Small, Great Life
Over these years, we have walked with little Maria through her ordeal—a child doctors said would live only five years, who made it to twelve and became a teacher to all of us, disabled and able-bodied alike.
For two years, she and her parents were part of our Fede e Luce community in Saint Bernarde d'Aoste. She was born to divorced parents; her mother now lived with a divorced man who embraced Maria as his own daughter. When Maria died, her funeral became a celebration—a gathering where people and children bore witness to her worth.
Maria attended school from kindergarten through sixth grade. Teachers and classmates always made room for her. Four days before she died, they visited her in the hospital. Here are some of what they wrote:
"Maria lives because her parents give her strength every single day."
"She's lucky to have a mom and dad who love her so much—and who can still smile even though you know inside they're breaking." "With their courage, they bring joy even to the hospital." "Maria held on for so many years. I think her heart is full of strength. It's like we gave her some of our strength to keep living." "I remember how beautiful it was when she could still come to class and live her life. She kept being a light in this world, which is so often dark. Thank you, Maria!"
Fr. Klaus
Spiritual Assistant, Fede e Luce Community of Valle d'Aosta
From China
Dear friends, from time to time a letter reaches you from distant China. A missionary knows well that serving others demands sacrifice. In my case, as you know, I live in a place where religion is "protected" by the government—which is to say it suffers heavy restrictions. As a foreigner, I cannot perform my priestly duties openly. I won't hide it: there are those who report me for being a missionary. (At least someone notices!) There is no reason for despair, because in the end God's grace arrives, and it is mightier than any plan we make. Two weeks ago, for instance, four of our directors—and note that they are not even Catholic—came to defend me against the "crime" of being a missionary. They won the case. God works through the non-Christian too. Nothing is impossible for him.
Not long ago, an elderly man of nearly eighty, a Christian himself, reported me. Here's the irony: for five years he had pressured me to help his mentally disabled son before he died. He wanted his son in a good group home, in a sheltered workshop. We dreamed together and worked hard for years. I spent much of your donations and did work here in Canton to start a new home for disabled people near his house. Then, weeks ago, what happened? A formal accusation and a ban on the project—because it would show Christian commitment, and that might generate more trust in religion than in the Party! The spry old gentleman is himself a Catholic, one of those who "love the homeland" very much. But here is where the story took a turn: two directors from Huiling stepped in and had a word with the old man and the local officials. They made them think about what truly helps the most vulnerable people. In just one week, we had our registration as an NGO. A miracle—normally it takes one to three months. This happened because my colleagues caught the contagion of genuine charity, of the ability to forgive and overcome human weakness that brings harm into our lives. When the cross grows heavy, that is the moment of greatest grace—when the power of full love can be revealed.
Fr. Fernando (Xu Guo Xian)
On Autism
Dear Editor,
We read your special issue in the previous number of Ombre e Luci, which has always given careful attention to autism and to ANGSA, the major autism association in Italy. We thank you for that.
We would like to offer additional information to your readers on several points. The ANGSA website is: www.angsaonlus.org. The testimony from the Italian family that brings their son to Geneva is not particularly representative: almost all Italian families keep autistic children at home. If one were to recommend an institution, there are some in Italy itself—for example, the IRCCS Oasi di Maria SS in Troina, which has always been at the forefront of autism care and research. Some other accounts in your issue weigh heavily against inclusion. Yet in Italy and worldwide, the emphasis is shifting toward home support and school and social integration for autistic people. Our association regards integration as a great value, one that deserves improvement, not abandonment. The TEACCH method is treated dismissively by M. Lemay as if it were "an interesting approach at the start of intervention and in cases of severe autism, based on behaviorism, etc."—but it is actually a complex educational strategy that spans from earliest childhood through adulthood, because it prepares the autistic child to function in adult society. It is a major intervention initiative of the U.S. state of North Carolina, begun forty years ago, within which various methods can find their place. This is also emphasized by Quattrucci and Fedele, parents in a small Roman association connected to Filo della Torre. Lemay, who should be the expert, counters TEACCH with PAKING—cold stimulation—which has no mention in the literature and no scientific validation whatsoever. Schopler, the creator of TEACCH, has been invited to Italy for October-November 2005; we will share the exact dates once they are set.
Carlo Hanau
University Professor, Director of the Newsletter of the National Association of Parents of Autistic Individuals (ANGSA)
We thank Professor Hanau for his attention and clarifications. We note that Ombre e Luci is not a scientific journal and does not claim to be exhaustive when addressing medical-scientific topics. Rather, we seek to give our articles a clear and accessible character, emphasizing in various syndromes the human and relational aspect—the area in which our association works.
Professor Hanau's letter refers to texts published in the last issue of Ombre e Luci, particularly the article by Professor Lemay, a child psychiatrist and director of the autism clinic at Saint Justin Hospital in Montreal.
As for the experience of Mr. and Mrs. Ruisi (in the same issue of OeL), which we find moving in its particular singularity, it dates back forty years, when school integration was only beginning to take its first difficult steps!