The greatest torment
Belén, Nicolás’s mother
My journey and that of my partner, who is my faithful squire in the struggle, my Sancho Panza, is called Paco, but he doesn’t want it said. In common union, mutually supported by hope, we knew from the beginning what the objective was: the full inclusion of our son. I am referring to my youngest son, the youngest of the three, who is currently ten years old and is named Nicolás, not Nico, nor Niqui, no. Nicolás, like the saint to whom he does not refer as Saint Nicholas, but simply as Nicolás.
My search for an inclusive school dates back to the first year of early childhood education, when I was three years old. That year, 2012, marked the beginning of the greatest torment I have ever experienced in my life. There were three moves in less than a year in search of an inclusive education for my son. Some of us know the meaning of the word “torment,” what it signifies, the tears it entails, the sleepless nights, the gray hairs, the strands of hair that accumulate on the brush every time we comb it. If we even comb it, because there comes a point when we stop doing that, and many other things.
I changed schools in the first year of Primary school, where from the very beginning, when I spoke with the pedagogical team, I knew everything would go wrong. And it did. My son spent most of his time in a corner of the classroom staring at the ceiling. One day, at an administrative office, we went to the bathroom while waiting for our turn. Nicolás, while washing his hands, found lipstick in the sink. It was red, red, red… I was wearing a beret because I had lost almost all my hair and had dark circles under my eyes from exhaustion. But my son said to me: “Mom, put on lipstick like the pretty ladies! Then you’ll be pretty too.” I did. We laughed a lot because I was already beautiful with red lips. Since that day, whenever we went or go to submit paperwork, or to doctor’s appointments, I wear red lipstick. It’s a fleeting moment, because the memory that prevails from this torment isn’t precisely that, but rather the sleepless nights, the gray hairs, the insomnia, the apathy, and the lack of appetite. Something I can summarize in this way.
One night I even had hypothermia, which, thanks to my first aid knowledge, I was able to manage. I stopped being a person and became only a mother and defender of my son. I had no time for anything else. If you knew how many sleepless nights I spent searching the internet, trying to figure out what form they wanted and how to fill it out, as well as where to submit it. Then, without sleep, going to Valencia the next day, and waiting in endless queues to hand them in… having to return with Nicolás, who was accustomed to having two or three crises on the train, or in the street… A torture that no human being should endure, as there is a right that should be fulfilled by the system, and I have had to beg, almost, to see that right fulfilled and recognized. We have so much to change in this society, we need a twist, a revolt that throws us off balance and gets us out of this social stagnation, but it requires involvement beyond personal and individual needs, because this, like many other stories, is the struggle of an ant against a whole herd of elephants. And all the ants together would achieve more.
When he started primary school, the students would mock him, insult him, and hit him in the bathrooms and the cafeteria. Also in the playground, where no one was supervising. From nine in the morning until dismissal time, I spent my time looking out the window to see my son in the schoolyard, and I even climbed to the roof of my apartment to see his class. I did nothing else when he was at Nicolás school. Hours and hours suffering and watching how they invalidated and mistreated my son. I intervened on several occasions, sometimes even jumping the school fence to help my son, or to enter the school where a child was kicking him in class and the teacher was chatting at the photocopier. Nicolás went crazy those two years, he was unmanageable and tried to throw himself off the terrace. We need to talk about these things, about suicide, to educate, to prevent, to save those people, like Nicolás, who didn’t want to die, but to stop suffering.
I overturned a ruling in second grade, and I managed to get him a minimum of resources (PT, AL), very scarce and always outside the classroom, without taking into account his needs and learning pace. It went like this. In second grade, they rejected his diagnosis and questioned his 67% functional diversity, which was officially recognized, and three medical diagnoses in which all three professionals agreed that my son had autism.
They hear the word “autism” and many ideas, prejudices, and clichés come to mind. They think of Dustin Hoffman’s character in Rain Man with Tom Cruise, of Doctor Sheldon Cooper from the TV series The Big Bang Theory, and I wonder to myself: Why don’t they ask? Is he violent, aggressive, lacking empathy, will he feel something, or is he really cold, impassive…? Does he talk to others, does he make eye contact with people? So much ignorance they have and so little empathy!
Nicolás went to a specialized center for autism after they themselves sent him to a psychiatrist because they noticed certain behaviors. The psychiatrist was the one who mentioned autism after observing and talking with me. This specialized center is endorsed by the Department, although it is private and autism tests are not done through Social Security, they are funded, but that was not the case. We spent three days of tests and the conclusion was categorical and firm: textbook autistic.
I cross-referenced information with two other specialists who put the same diagnosis in writing, which was taken to the Social Security evaluation board. They recognized and granted a disability of 67%, without any “buts” or objections. But because of “how he makes eye contact,” they said he was not autistic. I had to appeal to the inspection of functional diversity evaluation services for the zone inspector to assess the diagnosis, who did not hesitate for a second upon seeing the reports, and that’s when things got worse…
It worsened to such an extent that my son was at home most of the time. That’s when I went to all the existing administrations that had to do with education, seeking recognition of his right to inclusion. That’s how I reached the Director of Education of the Valencian Community himself at that time, Manuel Vidal, the only person, along with his secretary, who recognized that right and advised me of a school where they did apply it. From Manuel Vidal’s words, I understood that educational centers do not include basically because they “don’t want to” or are not interested, because they know the regulations perfectly well. We are talking about one of the basic pillars of the Welfare State, a Fundamental Right like Education, corrupted, battered, trampled by those who wave the banner of that same public, free, and quality education established in the legislation. I fought tooth and nail until my son finished second grade in that school, and then I managed to get the SPE in my area to put the psychopedagogical unit in its place.Three moves, three, to be near my son’s new school. A school where they listen to families, don’t label, and do the impossible for the well-being of the students. A school where family participation is its fundamental pillar. Where inclusion is real. A happy ending, whose happiness goes hand in hand with a very short word that is easy to pronounce and very difficult to achieve. Inclusion.
It worsened to such an extent that my son was at home most of the time. That’s when I went to all the existing administrations that had to do with education, seeking recognition of his right to inclusion. That’s how I reached the Director of Education of the Valencian Community himself at that time, Manuel Vidal, the only person, along with his secretary, who recognized that right and advised me of a school where they did apply it. From Manuel Vidal’s words, I understood that educational centers do not include basically because they “don’t want to” or are not interested, because they know the regulations perfectly well. We are talking about one of the basic pillars of the Welfare State, a Fundamental Right like Education, corrupted, battered, trampled by those who wave the banner of that same public, free, and quality education established in the legislation. I fought tooth and nail until my son finished second grade in that school, and then I managed to get the SPE in my area to put the psychopedagogical unit in its place.