Being the father of a child with a disability: from the outside it looks like an unusual situation, but if you live it without rejecting it or treating it as punishment, it ends up being not so different from the situation many families find themselves in.
I don't want to be misunderstood: it's not a pleasant situation, especially at first, but you have to face it well for everyone's sake. In Alberto's case, things were helped by two facts — he was my first child, and my only child, and his disability was present from birth. Coming to terms with it happened gradually, with the hope always there that we might overcome the disability or at least improve it, and that we could devote ourselves entirely to him.
On the other hand, we had no other children to compare him to, and there were many hard moments: noticing he wasn't behaving like other children, and hearing — this was the early 1970s — the wildest and most contradictory hypotheses and diagnoses could lead to despair and rejection rather than the search for a way forward. Those were different times. People with disabilities were looked at with pity, or even suspicion. They were considered incapable and beyond help, often kept at a distance as if their condition were contagious. The family was their only anchor, which meant that almost always the disabled person lived shut away at home, cut off from the world around them.
This was not Alberto's experience. He always took part in all normal activities — in daily life and whenever we saw friends, family, and acquaintances. As a result, within the limits of his condition, he ended up living a "normal" life that allowed him to learn everything within his reach. He developed a very engaged attitude, and at the same time a strong will and determination toward both his environment and the people in it. He doesn't speak, but he understands — when he chooses to. Most importantly, he makes himself understood through his eyes and his bearing.
And the family? We adapted too. Hope never left us. The fact that Alberto is well, shows no sign of suffering, is cheerful and sociable — all of this more than repays the sacrifices we make. In the end, the situation weighs no more than it should.
A special bond formed between Alberto and his father — not always as quick as his mother to defend him. Alberto noticed, and adjusted accordingly: indifference if he felt he'd done nothing wrong, charming wheedling if he had. Always ready to repay a caress or gesture of affection with smiles, quick to show his father when he's out of place, asking for comfort when he's ill and, unable to speak, suffers in silence.
There have been sad and worrying moments too: I remember nights spent in anxious vigil over how things would unfold, made bearable by his grateful look and his smile the moment the crisis passed.
Today, even though attitudes toward people with disabilities have improved, they are often still thought incapable and not included in a relational life that would allow them to acquire whatever skills they have within reach. I want to press this point: don't underestimate anyone's capacity. Let them form their own personality. I'm certain that the results — however modest — repay the sacrifice many times over.
Giacomo Romanini, 2014