Exactly 10 years ago I found myself facing what would be, at that time, the worst news of my life.
My son, the most important being in my entire world, had autism.
His diagnosis was followed by a phrase that no mother should ever hear: “Your son's foundations are wrong and people are like buildings.
It doesn't matter how good what you build is, if the foundations are wrong, it's going to collapse."
look also
Talk about what you can, not about limitations
Yes: the world seemed to collapse at my feet;
the word autism resounded like a sentence of perpetual suffering.
The fear that my son was destined for an isolated life, condemned to exclusion and suffering, burst in, destroying the illusions of the happy child that I had dreamed of from the moment I wanted to be a mother.
The shock of the diagnosis, the hopelessness that that sentence carried, and the awareness of my ignorance
on the subject despite my profession as a psychologist, prompted me to train myself almost frantically with a single objective: to obtain as many resources as I could to accompany the best possible to my little one and give him the best possible quality of life, beyond any label and forecast.
Changes.
Giselle Vetere is a psychologist -in the photo on the left, at the time she graduated- but she had no knowledge on how to educate a boy with autism problem.
She studied and practice did the rest.
It was not easy.
During the first few years, my son had such serious sleep disturbances that he could not sleep more than 15 minutes.
He responded with terror to everyday and innocuous stimuli, such as the sound of opening a soda or contact with sand.
Convinced that walks were always a good idea, she used to take him to the park and to the square.
The tour, which was intended to be stimulating and enjoyable, terrified my little one.
The horns, the motorcycle engines, the sudden barking of a dog, everything seemed to plunge him into heartbreaking terror.
The frustration of not being able to have a normal walk, a peaceful night, a fluid family meeting without value judgments, was a heavy burden.
If I was to get ahead, my day and night had to be rearranged.
During the day, I would closely watch the therapeutic interventions of those who worked with my son to learn from them;
I would take as many graduate courses as I could and apply all the strategies that had the potential to help us.
At night, I would read as much as possible to improve my daytime accompaniment.
The first time, in a very orderly and neat way, I was executing each of the strategies that I was learning and complying with the therapeutic indications.
I reduced working hours to a minimum, I didn't want to get away from my vocation
, but I also didn't want to take time away from my son.
Changes.
Giselle is a psychologist -in the photo on the left, at the time she graduated- but she had no knowledge on how to educate a boy with autism problem.
She studied and practice did the rest.
While she was pregnant, Giselle Vetere did not see autism on her horizon.
When she was told about it - her son was about two years old - she felt that the world was collapsing.
But little by little she found many ways to interact with him.
One of the first indications was to try to let my son touch different textures and we were suggested to start with shaving foam, tempera and hair gel.
I bought a huge pot of blue tempera.
The succession of sleepless nights made her, exhausted, stumble and fall on the floor with the pot, which broke into a thousand pieces, dirtying the tiles and splashing walls and furniture.
On the verge of tears I exclaimed: "What a mess!"
And my son started laughing.
He to laugh heartily.
Excited by his laughter, I forgot about the pain of the fall and got his hands dirtier, repeating: "What a mess!"
And he laughed again.
So I got more and more dirty without getting up from the puddle of blue paint, while he accompanied me with his laughter,
until, of his own free will, he touched the tempera without stopping laughing
.
What had just happened by sheer chance would become a guide to many other challenges and difficulties.
From then on I decided to strive to make every situation as funny as I could, so that instead of suffering it, we would enjoy it.
The idea was to transform those stimuli that caused displeasure to my child into pleasant and fun.
Back then I still had no language;
the few words he had ever uttered he had lost.
My greatest wishes were reduced to hearing his little voice again saying "mom" and finding a look from him searching my eyes.
His elusive gaze filled my hours of absence, absence of contact, of intimacy.
It was not a symptom that filled me with anguish, it was the emptiness, as if at times our souls could not meet.
The meeting came hand in hand with acceptance, letting myself be guided by his interests and turning each activity into a game full of pleasure for him, which is the most contagious pleasure for a mother.
The darkness was disappearing as
I was learning to awaken the brightness of his eyes.
When I was little, he used to climb on my back while I marched on my knees with my hands on the floor, I would take him for a walk around the house as if he were a horse.
So, he would stop my march and say “go”.
After a while, this game served not only for him to say "go" every time he wanted him to start walking, but he was also able to say "Hiiiiii" when he wanted him to lift his hands off the floor and straighten his back to hold on with strength to my neck and have fun by continuing to cling without falling.
Later he also learned to say "fast" and "slow" and, with those words, to handle the speed of his mother-horse.
I was witnessing the magic of language, discovering that speaking things are achieved.
For a few months she would run at any sound she made, especially when she called out to me.
Nothing more exciting than
hearing him say "mom" again after having gone through the possibility that the ability to speak of her had been lost
forever.
His evolution was incredible, the games full of laughter and complicit looks made me feel very lucky;
lucky for his evolution, for the possibility of taking the time to play with him every day, and of hearing that long-awaited “mom, I love you”, when some time before we had been told that he would not recover his language.
His look, his smile and his voice became his most precious achievement. What anyone would take for granted, which we suppose goes naturally and spontaneously, appeared with constancy and love.
Each achievement gave way to a new challenge, many of them we could solve in the privacy of our homes, the most difficult were those that required the will of others.
A few were always there, willing to accompany us.
A girl became crucially important in our lives, she became a friend and never left her.
Unlike adults who tended to view quirks as something to be corrected, she simply incorporated them and turned them into play.
When my son was in elementary school, he had a fascination for collecting flyers on the street.
It was strange behavior and quite annoying to me, he would stop along the way and grab all the flyers he found taped to the walls, bring them home and pile them up.
He didn't do anything useful with them, it was as if he took pleasure in collecting them.
.
One afternoon his little friend invited him to her house and when she saw my son grab a flyer she happily offered her help, in those few blocks they collected a large amount of advertisements.
Upon arrival he proposed to play treasure hunt, and hid that treasure they had found together.
Following the interest of his friend, he transformed a meaningless activity into a symbolic game full of meaning and acceptance.
What she did spontaneously was something that had cost me months of study to understand, to follow her initiative, to take advantage of her interest to build an intimate and significant interaction from there.
I couldn't help but wonder what it would have been like if, like so many other children, the diagnosis and intervention hadn't come so soon.
What would have happened if I hadn't had access to all the training I had, if I had let myself be carried away by that initial sentence and hadn't tried to build anything, if I hadn't known how to play, how to help him say his first words, if I hadn't searched tirelessly until I meet his gaze.
A feeling of debt invaded me, not everyone had the same possibilities as us.
I felt as fortunate for my son's accomplishments as I was indebted to all the other children who would not receive early detection and intervention, from the bottom of my heart I needed to do something to ease the journey for other families.
Then a new son built of words was taking shape that he would call “Infinite Love.
Autism without limits”.
In its pages I tell about our day to day
, our challenges, our dreams and each of the strategies that were useful for this awakening to the shared world.
Some time after circulating that book I had the need to write another, in this case a story absolutely inspired by the effort my son made to play with a child with non-verbal autism.
One afternoon when we visited my parents there was a child fluttering in front of his house, staring at the sky.
My son greeted him and invited him to play, without getting a response.
He asked me what was wrong with the boy and how he could play with him.
I explained that he had nonverbal autism, and that joining this child's activity was a great first step.
In a few minutes they were flapping their wings together, first playing at being birds and then other animals.
.
In the days that followed, he urged new strategies.
Every time we were near his house he would go looking for him with enthusiasm.
"I want to be Santi's friend," he said one day, making it clear that for him this was a bond of love, and he unintentionally gave the title to my second book on autism: a story that explains in a very simple way the table and proposes strategies to facilitate interaction with neurodiverse children.
In an attempt to continue paving the way for those who explore neurodiversity, in 2022 I founded the CEA Solidario Civil Association, which I currently chair.
At CEA Solidario, thanks to the commitment of prestigious professionals, we have provided training on early detection to pediatricians from different hospitals and health centers throughout the country, as well as postgraduate courses on neurodevelopment and family support.
There were very hard moments on this path, the worst moments were not due to my son's intrinsic difficulties, but due to negative judgment and discrimination from the environment.
After years of hard work, he had managed to make a group of friends at school and led a rich and full social life, until whoever was his teacher talked to the mothers of his closest friends to keep them away from him because he feared that "they could catch their difficulties."
In the blink of an eye his best friends stopped talking to him without offering any explanation.
The complaints to the school and the complaints to the General Directorate of Education
did not make him recover those ties that continue to die
to this day.
Ignorance about autism sometimes takes its cruelest form: discrimination.
If friendships were lost in there, we would have to look for other spaces.
Children of friends and neighbors were gaining more and more ground and became companions for afternoons and adventures.
Even every once in a while the question about that teacher and whoever her friends were.
She still asks herself: "Why?"
Out of ignorance I respond, and we try together to spread knowledge, to fight against the myths that do so much damage.
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Giselle Vetere.
I studied Psychology (UBA) and worked as a teacher, researcher and clinician, convinced that they are practices that go hand in hand.
I specialized in Clinical Psychology and then did research for CONICET.
Later, I did the clinic and research at the GCBA.
After maternity, I decreased the hours of paid work and increased the hours of study to acquire better strategies.
My first book and my son arrived almost at the same time, and the awards and distinctions for academic work made me go for more.
Now I preside over the CEA Solidario Civil Association, from which I hope to accompany professionals and parents who are on the path of autism.