I received a call: “Adi screamed and passed out”. That’s how it all started. I arrived at the hospital at the same time as the rescue. In the meantime, Adi had recovered, and the doctor explained to me that it was a “crying crisis”, nothing serious. By the evening there were two more seizures, with loss of consciousness, and also by the evening I found out that they were actually epileptic seizures. I was praying it was a dream and I would wake up… It wasn’t like that. For six months, being in the hospital, the guardian angels in white coats tried to establish the therapeutic scheme by which to stabilize and prevent the occurrence of epileptic seizures. I only remember the countless screams and sleepless hours in the hospital and I still remember my sister coming in the evening and walking him by the hand through the hospital park. The epileptic seizures eventually stopped but the screams for unknown reasons continued for another two years. Around the age of 4, the suspicion of ADHD appeared for the first time, followed relatively quickly by the diagnosis of autism. I didn’t have time to cry out my pain, only the white threads betrayed me. With many hours of therapy started at the age of 4, what some doctors already considered a miracle happened: he started talking! I would have wanted it to be “mom”, but it wasn’t like that, just “hello” spoken with great fear… maybe not by chance, it was a greeting for this world in which he was trying to make his way.
As he showed signs of wanting to fight, not everyone around understood what was happening and hurt him, not always on purpose, with a word, a look, rejecting him and now at the age of 16 I’m already exhausted it seems all the options for him to be accepted, to be able to interact, to develop, to feel, to exist. All this time, next to us, a child miracle turned 18… his sister, the one who learned from the age of 4 that her mother would not have that much time for her. It was suggested to me that I should stop trying and that immobilization and sedation should not be things that should scare or upset me. No, I didn’t cry out my pain even now, with Adi by my side. For many years I have learned to be more patient, gentler, not to condemn neither helplessness nor misunderstanding. That’s how much the system can take today, that’s how much society can take now. I would finally have a full night’s sleep, a day without noise in the house, a day without the fear that I would no longer be able to support him, being isolated in the house and with the risk of not being able to have a job. And what sleep would there be? Maybe one that I wouldn’t want to wake up from, accepting the failure in this life and the murder of my son… the one that can’t bear any kind of sadness on my face.
I finally understood that if the world has no place for him, it’s time to start building a new world around him, for him and others like him, lost somewhere, in suffering: The NIA world.
It will be a warm and welcoming world where I’m sure his sister, who wants to wear a white robe, will step into it often.
I love you Adrian, when I’m not around anymore, you won’t be alone.
I love you my daughter, forgive me for not being able to be close to you as I would have liked.
The NIA-neurodivergent association supports adolescents and adults with severe autism by establishing a residential community with protected workshops.