Italian parents may find passages here that frustrate them—especially since group homes remain a distant dream in Italy. Yet we believe these reflections, written by a mother, can at least prepare your heart for letting your son or daughter leave home. And not at the last moment, either. Perhaps, we hope, they will help the more enterprising among you decide that the initiative must come from you—to shake loose those who must act.
Martino is twenty-four. He has Down syndrome. As a child he was lively and easygoing. By adolescence he could wash and dress himself. I kept an eye on him, but nothing more was needed.
Every year Martino left us for about two weeks. My husband and I were sad about it, not enthusiastic, but we learned to accept this necessary break. Martino handled these separations well, fortunately.
There is no benefit in keeping our son at home, even if he seems content. What's more, it does nothing to prepare us for the future. Normal children sometimes spend weekends at an aunt's house. Why shouldn't disabled children do the same?
When my husband died I was sixty-five. Only then did I understand that someday I would have to entrust Martino to someone else. I heard about a group home and went to a meeting for information. I don't know what possessed me, but I asked: "Could you register Martino? Not right away, but sometime in the next five years." They told me there was a very long waiting list. I said: "Then, if possible, register him immediately." There was no turning back. I cried when I got home. I had acted on impulse, but really this had been in my subconscious for years. One part of me hoped Martino wouldn't be accepted, and another part kept asking: "My God, what would I do if they wouldn't take him?" I felt guilty. Wasn't it like abandoning him defenseless? Mentally he's still a child.
I Was Grieving for Myself
Truly letting your child go is something you don't want to think about. Yet you think about it from the moment he's born.
After my husband died I finally understood that I too could disappear. If only I could entrust Martino to someone, I would die in peace. My daughter and sister agreed they would take him, but I hated that. Martino is my son. Part of me rebelled: would they have agreed so readily if he were their own child?
I had no real support at that time. My meeting with the social worker—who was talking with the mother of a disabled boy for the first time—was disappointing. She discussed Martino's move with him and said: "Wouldn't you like a nice room, Martino?" My dear boy said yes. His attitude toward leaving was so positive that it couldn't fail. I would never have let him go if I thought he'd be unhappy. But I was grieving. It felt like a death. I was losing my son, and in a way losing myself. I would be alone. On top of that, financially I was better off with Martino than I would be on my pension alone.
"There is no benefit in keeping our son at home, even if he seems content"
I Needed Martino
All those years when he attended a day center, I left at 8:30 every morning to wait for the minibus. Every evening I rushed home in a panic, afraid he'd arrive and find me not there. Life always has a "debt" and a "credit." The debt, with a disabled child, is that you are truly chained forever. But the credit is the wealth of having someone who loves you with unconditional love. With my son's departure I would lose all of that.
Despite my relief at finding a place for Martino, despite being glad for him, I couldn't bear the thought of separation. What conflict! Later I understood: I needed Martino more than he needed me. The older I get, the more I miss him. I love physical contact. I was about to lose something so vital to me—the ability to touch him. I wouldn't be able to hold him in my arms anymore, to kiss him?
In His New Home
On the first day the director gathered all twenty-four residents so we could meet over tea. It was a happy moment. Martino settled into his new room. He was part of a group of eight young people—an ideal setup. I felt no worry leaving him.
I can say only good things about the staff. People wouldn't do this work unless they were truly committed to it. I can ask any of them for something, a cup of coffee for instance. When a button comes off Martino's shirt I know where to find what I need to sew it back on. I visit Martino every week. Every month he comes home for three or four days and is happy to do it. Of course there have been disappointments. For example, when the home took in a young woman with behavioral problems who screamed during meals. Martino was upset by that.
It all comes down to acceptance. If you don't accept the new situation, no one can do it for you. Now when Martino comes home, I'm happy. When he leaves, I no longer feel sadness. I realize I was exhausted, that for years I had been straining. Today I'm far more relaxed. I no longer need to rush home to care for Martino. I can live my age. I enjoy seeing friends, sitting down to read, watching television.
A Life That Fits
You grieve for your disabled child because he won't have a social life, won't go out with a girlfriend, won't know the joy of fatherhood. My son won't have the life I imagined. But he has a life that fits him as a disabled person. When I visit him I feel I'm in his home—everyone makes that clear to me. Before, I never knocked on his door. He was just my little boy, and I never really treated him as an adult. The staff made me understand that. They give him his dignity. Our children were so young for so long that "mothering" becomes second nature. Besides, Martino probably has a mental age of about six.
Now he has a social life he didn't have with me. With his new companions he goes into the city by car, to the pub, shopping. They participate in meetings where their opinions are asked and they're consulted—whereas I never once asked for his view.
Martino has become a fuller person. He has his own personality.
My husband and I always thought there was potential in him, but we didn't know how to develop it. We love our children and care for them, but we don't know the means and methods to help them become independent. We struggle to imagine their lives in a different setting.
I wanted to be told Martino would stay at that group home for life. But as he ages, might he want something different one day—a studio apartment, perhaps? I'm told he's about to start a cooking class. Isn't that wonderful? Even if he'll never cook, he's being given the chance to try. Of course every family's story doesn't unfold so easily. Some parents can't find a group home, or are deeply disappointed by the one they do find.
"The older I get, the more I miss him"
The challenge of letting go is complicated by the fact that the disabled person doesn't choose to leave on his own. The parents make that decision for him. They may seem to be rejecting him, "throwing him out," and they know they'll be judged for it. They also know that no matter how hard they work to give their child financial security, a change of life won't erase his vulnerability.
But I want to say to everyone anyway: "Look at what happened to me. Letting him go is possible. I know how you feel—I cried too. You think no one can care for your children the way you do, but knowing the good they'll gain is worth every tear, every difficulty. I can tell you I don't even feel lonely anymore. It's like a reward. Yes, it's true: if you have a child, you must let him go."
- Ann Richardson, 1996, (O et L n. 111)
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