“My only goal is that, let’s talk about autism, so that what this disease is can be exposed, so that it is not reduced to a problem for the families that suffer from it ”. María Almeida is a teacher mother of four children, two of them with autismand she was able to convert all her emotions, both positive and negative, into a sensitive work of visibility and awareness of this disease, to fight against the prejudices generated by ignorance of the subject.
In the path of struggle that he has to go through every day, Almeida has managed to see all his effort materialized in his own book What we talk about when we talk about autismin a podcast, and in a storybook that helped her write her daughter on the autism spectrum.
“While someone speaks, someone is listening, and the one who listens asks questions, looks for answers, goes for more, and as long as that happens, there is hope”, he argued in dialogue with PROFILE.
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As mentioned, Maria is the mother of four children.Francisco, 21, Pilar, 13, Juan, 12, and Tomás (“Toto”), 9. Of them, “Pili” and “Toto” are the ones who have TEA, autism spectrum disorderand that as a result they have turned their mother into a tireless fighter.
“The fight is daily, from all places. It is everyday, day to day. There is always some battle with the boys within the spectrum,” said the woman, who insisted that people with autismespecially children, “live reality in a different way and manifest it in a different way”.
Without thinking about it, Maria can put together an almost infinite list of the simple things in life that become challenging when dealing with people with autism, starting with very simple things, like eating and sleeping, and going up to much more complex issues, like a unprepared education system o to fight against bureaucracy to be able to cover the therapies of their children.
“It’s loneliness, it’s tiredness, We live the reality of all Argentines and to that reality is added constant stress. It is that the laws are not complied with, that you have to be fighting for things for which there is legislation, it is that the rows for the disabled or parking are not respected, that is all,” said the woman, mentioning just a few of the many battles that are presented to you day after day.
In this sense, he insisted: “Sometimes you survive. Parents of people with autism have to be alert 24 hours a day, seven days a week, 365 days a year, for the rest of our lives.”
“When you have a child with a disability, you don’t sleep thinking about what your future is going to be, what will happen to that child when you’re not there. That’s what keeps us awake and keeps us upright, what that obliges and pushes us to continue fighting for their rights,” he added.
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“You fight to get diagnosisyou fight once you have it so that the social works comply and they have the therapies, you fight every year so that they renew them, and as they grow up, they fight for inclusion and opportunities, because they are fewer and fewer and they need to grow, go out and relate,” he explained.
In any case, he made it more than clear that he continues and will continue to stand firm for his children “to make a world where all worlds fit” and “try in the life that remains (both for her and her husband) to do everything possible to leave them a decent life” the day they are gone.
“As parents, we have the mission of making our children and our reality visible so that things change,” said María, noting that, in her case, she had to work with words, in order to find a tool to not stay still. and “make noise.”
Two books and a podcast to talk about autism
On his way and his daily struggle to raise awareness and make visible what the autismMaría saw all her efforts materialized in two books, Pillar of Dreams y What we talk about when we talk about Autism, and podcast and one column that helped her raise her voice and open her reality in search of reporting on the subject.
Pillar of Dreams. The first book that María launched is really a book by her daughter Pilar, who when she was little expressed herself entirely through until, drawing and painting. The girl at that time was 11 years old, she spent hours drawing and it was her mother who realized that those drawings made up a story.
“She left the words but not the communication”affirmed the woman and related: “We began to save his drawings and we noticed that they had a sequence. From there we began to see them in a different way and, from my humble place as a mother, I tried to tell a story with those drawings.”
Thus, Maria turned her daughter’s art into a storybook with six stories inspired by real children on the autism spectrum: Pilar, Tomás, Santino, Juanse, Tiziana and Mateo. The story is illustrated by many of the works that she did as a little girl and seeks to leave a message about the importance of values, friendship and family.
“Pillar of Dreams It has reached unimaginable places and continues to arrive”proudly revealed and told that it was worked in gardens and that it is now being used in a school in Córdoba as a central axis to teach about inclusion.
What we talk about when we talk about autism. Regarding the book that she took out as a mother, she clarified that “It is not giving a lecture on anything” and he defined it simply as “one of the many views that exist within the autism spectrum.”
“The book comes from a Facebook page, which I started by my need to express a lot of things that happened to me”, he pointed out and told: “Two years ago a writer offered me to start publishing the same thing but in a newspaper column. Some time later the book came out based on those columns.”
In this regard, he stressed that “There was a person who believed that what he wrote could do good to others and helped to share it”. And so the book was born in which he talks about what the Autistic spectrumhow it is diagnosed and also addresses deeper issues, such as inclusion, how to deal with the diagnosis and what they need from society.
“Both books had great repercussions, in all aspects,” he highlighted and expressed: “If you can make a single person feel a little peace in the midst of so much storm, I think it’s worth it. That is the purpose of the book, to raise awareness, so that it reaches whoever reads it and can empathize and understand our reality.”
Likewise, he assured that the publication “exceeded everything imagined” and that “one does not measure how far a dream and an action can go, how many lives can it touch. The repercussions make us realize it was worth it.”he stated.
“As long as a single person can make a difference, it’s a job done”insisted and clarified that “the purpose of the books is not to earn money, but to disseminate”, since they have done everything “by lung” and out of pocket, something that required a lot of emotions, effort and fatigue.
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In addition, it is worth mentioning that the book also gave rise to the creation of a podcastunder the same name, with the aim of disseminating its content through other platforms, although it is now inactive, they have already lost access to the account through which it was published.
“There is a desire for more, obviously”confirmed María with the possibility of facing new projects, although she pointed out that “this year she needs to lower the decibels”, since last year was marked by a large number of things and at this time she prefers to prioritize her health in order to be well for his family.
A message for parents of children with autism
When asked about what message she, as a mother, could give to those parents of children with autismespecially those who have recently received the diagnosis, María focused on them “listening, searching, informing themselves and choosing what they think is best.”
“The diagnosis of a child is always a bucket”recognized and pointed out: “It moves all the structures, and if a dad was not Superman before the diagnosis, he will not be after.”
However, he emphasized: “A diagnosis does not change our children. And as parents we are the best resource they have”. And in this sense, he clarified that “professionals are important”, but that “parents are with them 24 hours a day and they are the ones who know them like no one else”.
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“The path of autism It is very diverse and there are many routes to take. Everyone is different, look for what you think is best for your children,” encouraged María from her place and advised these parents “That they listen to each other, that they always prioritize the happiness of their children and theirs and lean on other parents”.
In turn, in relation to the moments that can be harder, he advised: “If you have to cry, cry. But then dry your tears and move on. There are going to be days where you feel like you don’t have the strength at all, but the next day there is a new beginning.”
“Believe in the unlimited potential of our children. Do not let yourselves be defeated”he emphasized and concluded: “As long as we keep moving forward, there is hope that something will change.”
CP
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