Marcelo and mom's magical moment
UNICEF Cuba supports teachers and families of children with autism through accessible resources with pictograms to enhance their learning
“When Marcelo shows us something new he manages to do, the whole family’s day lights up. We have learned to enjoy the little things and the most seemingly insignificant moments.”
The joy of Ileana Ulloa and Anielo Ramírez has the face of a game, an interaction, a phrase or a smile. After learning that their 7-year-old son Marcelo was diagnosed with Autism Spectrum Disorder (ASD), their lives were turned upside down and they were forced to look at everything with different eyes.
We also had different eyes that afternoon when Marcelo and his mother gave a lesson in patience, perseverance and love to those of us who attended the presentation of several texts for children with autism and intellectual disabilities at the Palacio del Segundo Cabo, in Havana.
Ileana, like other times, followed her son to the place where he felt most at ease in the room: a balcony overlooking the sea. Next to him, she lay down on the floor and they saw, one by one, the images of the books they had just received.
The whole scene was calm, but as Ileana says, a calm that carries other storms; just like the one they experienced before knowing Marcelo’s diagnosis.
“When we finally found out, we went through a grieving process. But we didn't settle or stop there; we started to find out and learn about autism and everything we could possibly do to help the child’s development and independence,” she says.
Initially they received support from the Catholic organization Cáritas, where they attended once a week for 45-minute sessions. Then the child started at the “Dora Alonso” special education school, in the combined modality.
Marcelo is a very visual child, he is attracted by illustrations and is developing global reading skills thanks to the work of the speech therapists at his school and the accessible resources with pictograms produced by specialists from the Central Institute of Pedagogical Sciences (ICCP) with the support of UNICEF in Cuba.
Like all children, he has his preferences. For example, he enjoys working with the teachers more than with his mommy, and is motivated to participate when the activities engage his interest.
His family says that the books and animated materials with pictograms, created especially for children with autism, are very useful for comprehension, reading, identification of colors and geometric figures and other skills that make them more autonomous people every day.
Specialists with more than 20 years of experience in the education of children with autism have elaborated and adapted classics of children’s literature into friendly texts with pictograms. With the support of UNICEF Cuba, the books Cuenta cuentos and Canta y juega were produced, the latter along with an animated series of five episodes entirely made with pictograms.
“We are very grateful to the ICCP for the creation of these books and for the multiplatforms. However, I don't know of any mobile application made in Cuba to guide us on topics or means of support for autism in children. It would be very important, because we consume versions from other countries in which the vocabulary is not the same,” Marcelo’s mother explains.
In addition to gaps in access to information, families of children with autism face the challenge of everyday life.
“It is a challenge when we are on the street and for some reason they have a crisis, and people start to judge and give opinions in an inappropriate way. In those moments, we have to divide ourselves between trying to calm him down (which is our priority), explaining what is happening to the child and educating about autism,” argues Ileana.
There is still a lack of knowledge and limited awareness regarding children and adolescents with autism and their families. The ICCP, with the support of UNICEF Cuba, developed materials on myths and realities about autism, as well as pocket books, postcards and capsules to eliminate false stigmas and promote educational inclusion.
Marcelo was restless, at times, that day we met him; but dozens of families and children accompanied him, in an audience knowledgeable about the subject, due to personal or professional closeness. The same audience that admired the beautiful scene in which child and mother shared a magical space with their new books.
“For all those families who are just starting out, I would tell them not to panic. It is very difficult, but what’s important is the children and their wellbeing. For their sake, we mustn’t stop and we must fight so that they have all the support they need to have a good quality of life and an adequate future,” Ileana advises.