CAMAGÜEY.- Every April, society and the press remember that autism exists. We post posters, tell stories and publish photos to show solidarity with families whose reality and dreams have been changed by a diagnosis.

 But on any other page of the calendar, there are people who permanently inhabit that blue tide that steals the headlines and attention these days.

 There are people like Eyisel Cortés Cossío, the young educator who, out of “politica de cuadros,” (Cadre politics, initiative to promote leadership in the organizations), today directs the very special Héroes del Moncada school, and learns in the exercise, with her colleagues and students, “from the most difficult condition of all” those she studied; and like Lissett, Fernan's mother, leader of a tribe of families that share information, affections and causes.

 Lissette and Fernan, in one of the activities for Autism Awareness Day.

There are also people like chef Rolando, who on socializing Thursdays gives recipes and skills to the older kids; and like the clowns Florecita and Cebollita, who adapt to the lack of electricity and the unrest of a different audience to provoke laughter and give away balloons.

And there are people like Aideli and her Kervin, Jorge and her Liam, like teacher Aida and Frank Luis.

While their little ones enjoy the "jump-jump", Aidelis and Jorge (in the background) share their stories with us.

A TRIBE THAT IS SUPPORTING

 In the “jump-jump” there is a party of laughter and pranks to which there is no end in sight. Aideli Martín Gutiérrez and Jorge Vázquez Hidalgo would like it infinitely, infected by the joy of their children and fearful of the moment to get them out of there: “No, it doesn't work to alert them that there are so many minutes left… They 'pigeonhole' themselves into what they like. “There will be a mess,” he explains.

 She shares the formula: “Divert the behavior, understand them, have a lot of patience,” and puts on the face of someone who is getting ready for a tough experience. A single glance at Kervin returns the smile with which she begins her story:

“He had the typical development of a child until he was one and a half years old. Then he forgot all the words he already spoke, even his name. He suffered a gradual, almost complete regression, the only thing he remembered was walking. He screamed a lot, made gestures that I later identified as stereotypical. In my family they thought I was 'crazy' because no one else wanted to admit that something was happening, until the psychiatry team gave us all their opinion.

 “There in Carlos Manuel de Céspedes they told us to go to a stimulation room, where he spent hours screaming without consolation or solution. One Tuesday afternoon someone told me: 'if you had family in Camagüey, there are three special schools there and maybe...'. That Friday I already had registration here, where we have lived for almost three years, in a borrowed house, a radical change for all of us that we have faced together. My husband sometimes doesn't ask as much or make what he knows so obvious, but at the moment he surprises by saying something that shows that yes, he is aware. My daughter, as often happens with siblings of autistic children, has 'grown' faster, without jealousy, with a lot of autonomy, understanding, and patience; “My children understand each other well,” says Aideli.

 And Jorge explains about her four-year-old son Liam: “What if it changes your life? Imagine, he only has me, and I have him and my mother, now old, who is hospitalized today. I have to juggle taking care of the house and them. When I pick it up, the rest is over. All children need attention and time, but they are not so clear about the danger or the limits between what is good and what is not. He also needs more space, we spend a lot of time outside the house, because he doesn't like being confined.

“At two years old I noticed that he was not making any progress in speech. Furthermore, he can be calm and at the moment get upset in a way that I, without having experience as a parent, understood that he was not 'normal'. So I took him to the CDO (Diagnosis and Orientation Center) and from there, because they suspected autism spectrum disorder, they sent us to the Héroes del Moncada special school. At approximately seven years old, the experts confirm or not the diagnosis, while he receives classes and differentiated stimulation.

 Aideli takes the opportunity to thank: “Luckily we arrived at that school with a faculty that was born for this and other families that walk this path. We adapt the learning, because each individual is different, but we share motivation strategies, experiences, bibliography, understanding and support."

 “Finding this community has made me more confident, more hopeful, less alone in this process that is not about speed, and there is no way to know where it will end up,” Jorge agrees.

 Aidelis speaks about dreams: “Together we aspire to communities that respect what is different more, that question less, because they make your life difficult. At first one stops going to recreational places because in the middle of the fight you feel like they are questioning the child or you. Or you have a hard time working, going to a meeting after 4:00 p.m. knowing that your child will not be still or silent all the time, that he will repeat the phrases they say through echolalia. I have learned over time that the limit is neither in Kervin nor in me, but in them; however, it is inevitable that sometimes these attitudes affect me.

 “I'm not fooling anyone: I would like my son to learn and follow social guidelines, but not everyone can! Although family and school give their best, it largely depends on their condition, their brain. That's why I spend my life trying to educate people to think that not all of us respond to the norms, that there is more than one language to express what we want, that not all of us have the same patience or concentration, or the same way of walking, of being... These opportunities to show ourselves to society, to share our experiences, to wear blue and talk about autism, are like a light.”

Aida tours the city with Dorian and Fabián, her current students. 

THE NEW AIDA

This year, teacher Aida González Pacheco would have been “reincorporated” into her usual school for the first time, probably with a first grade, because she preferred to complete cycles. And yes, she retired after 44 years of work. But two boys from her senior school changed her plans and in September she moved her employment record to another school.

 “They announced to me that they would insert two pioneers with Autism Spectrum Disorder into my group. I felt everything; first, I was scared. I had to take on 27 students alone and teach the seven subjects in a defining year. This great challenge was added. My two new students soon won me over, and I changed my questioning from: Will I be ready? for, Why didn't they came to my classroom since fifth grade?

 Aida, who has always been close to the families, established an almost unbroken line with the mothers of Liam David and Ernesto. From them and with them she learned about autism: “Now I look back and suspect that I probably taught other children on the spectrum, even if they were not detected then. Their behaviors were very similar, their gestures, the way their concentration worked, the explosions… perhaps with what I know today, I could have been more useful to them.”

 It is assumed that each sitting next to another member of the group, Liam David and Ernesto received help. But wouldn't Liam and Ernesto be the ones who helped the most? If from the front of the classroom Aida transformed plans, style, teaching strategies... who can estimate how much magic that pair distributed to those who remained closest? Aida's last class in “general education” was a little more like what the world we inhabit should be like: she had more nuances, more inclusion, more love.

Infatuated by the blue universe that Liam and Ernesto presented to her, convinced that she could no longer do without such a color, Aida said goodbye to her school and appeared in “Héroes del Moncada.” She now teaches classes that do not respond to a single subject nor are they so programmed: she reads Tres Héroes; she notices concern, she takes out a map to locate Caracas, the capital of Venezuela... a sign leads her to show them the distance to Cuba, which is in miles, but can be converted into kilometers... something suggests another change of course, and classifies kilometers like a slang word... To understand the metamorphosis, perhaps you have to see her telling it, all histrionic, and read the truth in her eyes when she admits: "I had never danced, or sung, or acted, to teach anything!" They have made me become an artist!”

 Translated by Linet Acuña Quilez