la
storia di
leone
Leone was born perfect at the end of April 2013. He always had a defined personality: very stubborn, decisive, sometimes punitive. Cheerful, easy-going and present. He wasn’t for big relationships, neither super loving, or the kind of baby waving is little hand to say hello, but he was smiley and sweet. We simply let him be himself, respecting the fact that all children are different. He began to show strange behavior when he was one year old, he seemed to be suffering from car sickness. After a few bends he would throw up and then pass out. We only realized later that not being able to look straight in the eyes or around him, he easily had spinning head and nausea. When he started walking at 14 months tilting his head towards his shoulder, a few close friends suggested there might be something off, we hoped it was due to the fact he had just started walking, but we grew suspicious. As we started feeling anxious and worried, we decided to change pediatrician to have second opinion. That was the moment, the beginning of our obsession. You think “why doesn’t my son look at me”, you find strange the way he observes objects and studies how they operate or the way he instantly identifies the only hair on the sweater. It’s really hard to stay rational while you’re being hit by a hailstorm of information: people giving you opinions, specialists, things to do... The first diagnosis of Leo after many careful evaluations and examinations was: autism spectrum with communication and language disorder. He was 18 months old. The second diagnosis of autism spectrum with speech and comprehension disorder and so on with other diagnoses that were less and less positive leaving us very little hope. So we took a deep breath, we cried our tears, rivers of tears but we also had a strong desire to prove wrong all those doctors and professors who didn’t even try to look beyond.
Looking at thousand traditional, experimental and parallel therapies and trying them, which have certainly helped Leone, we’ve understood however, that for special children like him, to play is a duty, interest is not taken for granted, inclusion is rare and that fun and banter time and various games are unusual. Today Leo doesn’t speak, he doesn’t have the voice to name and express his emotions and he does it the way he can often with anger, screams, crying, frustration and fear. Fear inhabits his soul even more and there are no words to reassure him because words don’t cross the barrier of his symptoms. The world is outside and he seems to be alone inside its wall. It is not easy for a parent to deal with impotence and it’s not always possible to put aside nerves and frustrations. The instinct is always to scream because even if we are adults we get scared, but it is important not to, because the journey is long and the energy and attention revolve around Him. We realize that the access to Leone is made of little things, you look at him, you lower your voice, you weaken your fears because you have to slowly enter his. You try as you can to tear him out of anxiety. There are no words but gestures, slow, small movements, we touch him, we hug him when he lets you, most of the time you try to cross the line between our language and his, respecting as we can that boundary between our language and his. Every day we try to fill these empty spaces, trying to make his life more “normal” and preventing autism from making its way more powerfully and upsetting my son, slipping into every space.
