Every mother and father live with dread—often with anguish—about the future of their handicapped child, especially as they grow older.
It's a serious problem, and writing in a magazine won't solve it. We know that.
What moved us to take this step is simple: everyone asks us. Parents who are energetic and those who are resigned, the young and the elderly. They want a real answer, something concrete, something we can put on the table: an address, a home, a community. Unfortunately, there is almost nothing.
So what now?
Armed with goodwill, we set out across Italy looking for models we could offer you as examples—both in how they started and how they are structured and run.
Our goal?
We wanted to show a path, a trail to follow. Right now, it seems to us that only by rolling up our sleeves—in small groups of parents—can something begin. It takes trust. It takes fighting once more to prepare our children, to lay foundations, to find the right formula for each child. Not everything works for everyone.
What matters, and what we think we should say clearly but also gently, is this:
- You cannot wait too long to find a solution.
- You cannot wait for the "State" to figure it out. If there are solid projects and well-thought-out proposals, perhaps the State will help...
- You cannot expect others to find the answer for you, and for free. Every parent must lay a stone so the house can be built...
This issue of Ombre e Luci is meant to be a first brick. Made of words, you might say. True—but words written from the heart. They speak of people who have managed to build something real. They want to tell you of our caring attention and, we hope, the attention of others, to a reality that burns, that keeps us awake.
They are words that want to say to you: Take courage! Let's get to work. Ombre e Luci will try to help anyone who, with vigor and realism, is ready to pick up the shovel. We can offer advice, ideas, addresses of places already operating, news of projects or needs, and so on.
We entrust our shared dream to the Lord and ask Him to make it real.
—Mariangela Bertolini, 1985
"One Stone After Another, You Will Reach the Top"
A Few Stones (or Tips)... Especially for Parents of Children with Mild to Moderate Disabilities
Parents need a realistic, as calm as possible view of the "future"—both their own death and their child's future situation. Better to talk about it than to make it taboo. A person with limited intelligence accepts truth better than tension or worry.
Parents should help their disabled son or daughter face their own limits with awareness—by talking about them together, by taking the drama out of them, and by emphasizing what they can do. Children gain confidence in themselves when they feel that we have confidence in them.
Parents should help them reach the greatest autonomy possible: using the toilet, dressing, eating all kinds of food (yes, they have their own preferences too, just like other children), good manners, courtesy, knowing how to say please and excuse me.
Parents should encourage them to spend time with people other than family—a few hours at first, then a whole day, then a weekend. Help them make friends with other young people their age.
The list could go on. We urge parents to talk with us about this, to tell us what they think is right or wrong or hard to put into practice.
Life in community needs to be prepared early on, to make things easier for whoever will one day take your place.
—The Editors, 1985