My Greatest Dream
The mother of a boy with Down syndrome
I'm the mother of a boy with Down syndrome, almost 22 years old. I've been receiving your magazine for years now and have always valued it deeply for its rich content and sound advice. Many times I've thought about writing to ask you questions and share a bit of my story, but time got away from me, and I wasn't sure I should take up your space. Now that I've retired this year, I'm working to launch a project—my greatest dream since my son Alessandro was born. I have two other children, both grown: Giovanni is 38 and Francesca is 36. My husband left us twelve years ago. Alessandro has good independence. He's a bright young man, communicative and likable. I could be satisfied, but my great worry is Alessandro's future. I believe I share this concern with many other parents like me. I dream of establishing a social cooperative for Alessandro—surely they exist somewhere in Italy, though I don't know where. I wish that a group of us parents could buy land in the countryside, not isolated. The young people could work in organic farming, run a pizzeria, set up craft workshops. What I'm asking you is: could you help me learn what social cooperatives exist across Italy? I'd like to visit them, meet the people who run them, and understand what challenges they've faced and how they began. Liliana Antoniello, Bari As you can read here, we visited the Alice social cooperative with your request in mind. We hope it helps.People Standing Ready Ombre e Luci reaches particular readers, and perhaps some will recognize themselves in what I have to say. I'm the mother of three children (and a goldfish, as my husband likes to remind me). My youngest is a five-and-a-half-year-old girl with developmental delay and autism—or some form of behavioral, communicative, or relational disorder (you can frame it as you see fit; we still haven't quite sorted out the distinctions, and perhaps some professionals haven't either). My life, like that of many mothers like me, consists of the usual stressful everyday routines—juggling work and family. But beyond that, there's an added layer of organizational, medical, logistical, and mental demands that are considerable. Rather than bore you with the details of what I do and will do with and for my daughter, I want to pause and reflect especially on this past year. School commitments are wrapping up, and with them my daughter will take a break from other activities too—therapy, gym, swimming lessons, and so on. As I think about this summer pause, I wonder what she'll carry with her from everything she's done and all the people she's met. That's a mystery. Many photographs will remain in her memory—images collected and organized, partly for therapeutic purposes, using methods like AAC and TEACCH. In my own mind and heart, many images will remain too. Beautiful experiences and difficult ones. Beautiful people and difficult ones that we've encountered. So, summing up this long and eventful year—like taking a bow after an exhausting performance—I want to offer my heartfelt and profound thanks by naming names. (Please don't take offense if I disrupt your precious privacy.) First, I want to thank our wonderful pediatrician, Dr. Laura Reali. She's always present, available, attentive to any medical or paramedical request. She's generous with advice, always informed and up-to-date on all the issues. She provided us with crucial contacts, but more importantly, she's there whenever doubts and worries surface. She's always kept us grounded, never pushing fantasy cures or "magic" treatments. She's objective and practical. I know she has a fantastic project in mind: building a network of communication and coordination among all the doctors and specialists who can follow a child at the moment of initial disability diagnosis, so they can guide parents in developing a shared, unified approach to the child's care. Dr. Reali, meeting you was a gift. Next, I want to thank Patrizia, a fitness instructor at a small gym in the Balduina district, "KGM." She made herself available to include my daughter in a small group of children for "introduction to sports." With patience and tenacity, she carried on her work even with a child who was "a bit more difficult and indifferent to rules." She understood my daughter's challenges; there wasn't much I had to explain before she managed, after a few months, to relate to her with calm and also with authority. Not every gym does this. Not every instructor takes this approach. To Patrizia I say a heartfelt thank you. Next, I want to thank another sports instructor, a swimming coach: Stefano Pirona. Among his many commitments, he agreed to work with a small, "unusual" girl with an unstoppable passion for water—so intense she barely needed anyone beside her. But he inserted himself gently into this bond, creating a calm relationship with my daughter. It was hard to find a pool and an instructor willing to work with a child with her challenges. Stefano has always been attentive and willing to listen and take advice. My immense thanks to him as well. Then I want to thank Riccardo, the therapist my daughter Caterina met only in January, who won her over immediately. She's never had trouble working with him. Thank you for your patience in listening, for gathering my worries and concerns—and also the doubts and uncertainty of teachers who felt a bit lost in front of my daughter's mysterious world. When it was necessary, you came to school during school hours to speak with her teachers and advise them at a moment when they were deeply confused. Thank you to you as well. Thanks to so many mothers I've met along our way, and fathers too, of my children's classmates, who made themselves available during difficult moments to help with the complex puzzle of school drop-offs and pickups. And speaking of mothers, two in particular entered our lives "with force." They are two "supermoms" I met during a long "stay" at Bosisio at the "La Nostra Famiglia" institute: Fernanda and Elena. Confronted suddenly, almost violently, with their own children's disabilities, I watched them give way and then pull themselves up with strength, fully aware of what lay ahead. And they managed to laugh and make fun of themselves. After only a few days together, we found ourselves both weeping and laughing over our worries. They are remarkable people, far from us now, but I know they're there. I can count on them to confide in, and to exchange a joke with. To Fernanda and Elena I say: it was beautiful to meet you! Thanks to Jacopo (I hope the others don't mind if I single him out) who, when it was needed, never backed away. He made room among his many school and leisure commitments to drive a strange little cousin to therapy. Deep gratitude to our family members who, despite their many problems and the relentless march of age, have stood by us and helped keep this complicated machine running. A year has passed. I believe much of our family's calm, and our children's, comes from knowing we have so many people around us—attentive, sensitive people who accept my daughter's "oddities" with care and positivity. Monica