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.
March 2020 with the lockdown has been the moment that made us think more. It was only us, no more school, therapy, friends, sport... Staying at home with your child is a privilege for a working mother: you finally put aside your feelings of guilt and dedicate yourself, because when you are home, he wants you and only you and let’s face it, we never spend enough time with our children. It’s total quality time, you have more time to focus, no interferences. Making your son happy and not feeling different becomes your main goal. Taking care of a child like Leo, autistic, with attention deficit hyperactivity disorder, non-verbal, is already a unique life experience, in quarantine it’s even more. Leone realized that the school, his classmates, his father, the therapy, the rehabilitation center were no longer part of his life, he began to suffer in his own way. But in a usual life routine, when you work and you do not have the opportunity to always be with them to follow them, encourage them and motivate them, how do you do it? If you are lucky, therapy covers 4 hours a week, for some until a certain age there is school but what about the rest of the time? Children like our son need routine and predictability, they stick to habits to reassure themselves, but they also have a big desire to discover and their curiosity needs to be fueled because they need to develop their interests. Autism never stops, neither for holidays nor for a quarantine, it is always here, but if we can look beyond, there is a lot to discover and do and you can perceive the light, because however there is always a light. Leone teaches me that everyday, but above all he teaches me what enthusiasm is, he teaches me that real joy comes from little things, He teaches me to smile, gives me the strength to fight and keep positive, he makes me feel lucky and grateful. The Mind Foundation was born from the experience of our history and for the needs of all children with disabilities.
articles
“Se chiami tuo figlio e lui non si gira, NON MOLLARE”
Era presente, allegro, sveglio. Poi la testa che si piega un pò verso la spalla, le parole che escono, il panico. ma basta un lungo abbraccio a far tornare le speranze.
… non so se Lupo parlerà. Ma prima non mi guardava e ora mi stringe e mi bacia.
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“21 giorni di quarantena con mio figlio Leone, quasi 7 anni.
… A oggi posso dire grazie a questa quarantena. Ho imparato ad accettare di farmi aiutare dagli altri.
… L’autismo non si ferma mai, né per le vacanze, né per una quarantena, è sempre qui, ma se riusciamo a guardare oltre, c’è molto da scoprire e da fare e si può percepire la luce. Leone mi insegna ogni giorno, ma soprattutto mi insegna cos’è l’entusiasmo, quello vero, per le piccole cose, quello che ti fa tenere il sorriso, la voglia di combattere e la positività, perché in fondo siamo fortunati.”
