"Max has never stopped trying to be like the other boys his age."
Max is 18 years old and fits the profile we might expect of a boy his age. He likes cars, he likes going out, he likes soccer and he plays it. But behind this apparent normality is a boy with Fetal Alcohol Syndrome (FAS) that makes everything a little more difficult for him.
We went to meet Max and his family, who shared with us their story, their struggle, their doubts and hopes, so common in all families with children with FASD.
"Although we have always explained everything to Max about his background and limitations, he has never stopped trying to be like the other boys his age," his mother, Anna Maria Valera, tells us. "He is a happy, affectionate, and very family-oriented boy, very sensitive and emotional with people who have difficulties."
Max came from Russia, a country with a high rate of alcohol consumption among pregnant women, a cause of fetal alcohol spectrum disorders. "We were unaware of our son's condition and the difficulties we would face. We lived a normal life, traveling to different countries every summer, but we gradually became aware of his difficulties as he grew older."
From that point on, this family embarked on a journey with all kinds of specialists to try to understand what was happening while they faced a lack of understanding at school. "In the public healthcare system, they treated our son as a child with ADHD, and he didn't receive the ongoing therapy he needed. Encouraged by AFASAF, about three years ago we took him to the Specialized Unit at Vall Hebrón Hospital, where they conducted a thorough evaluation, confirmed his diagnosis, and gave us a clear picture of the reality of his disorder," explains Anna Maria.
Montse Dolz
Currently, Max is studying for a vocational qualification in automotive electromechanics and has played goalkeeper on a football team since he was four. He tries to lead a normal life despite his lack of social skills and other difficulties. "We believe that studying in mainstream schools instead of opting for special education has allowed Max to learn to navigate and interact with others, perhaps with less difficulty, but having to endure treatment and demands that have made him an insecure child," reflects Max's mother. "We always wonder if we made the right decision in choosing mainstream education over special education." Anna Maria becomes especially emotional when she recounts how she had to quit her job to support Max's schooling, despite all the misunderstanding and lack of awareness surrounding his situation. Anna Maria relearned all the primary and secondary school material to help her son pass every grade. It's a monumental effort that continues because, even now, she's learning about electromechanics to continue providing this support.
Children with FASD require constant supervision due to their lack of social skills, difficulty managing money, distorted sense of time and ownership, and tendency to trust everyone. This makes them vulnerable and prone to getting into trouble, including legal problems. These are risks that parents face alone, with all the anxieties that come with adulthood and the future.
Alcohol consumption during pregnancy, a cause of FASD
"We can do nothing but accept reality despite the emotional toll that both the child and we are taking," says Anna Maria. "We have suffered the loss of friends due to the lack of understanding of our children's illness, and in many cases, the lack of understanding from the family who think they are badly behaved and problematic children. This is not our case, but it is the case of many families."
Max's family only thinks about the progress of each day, "that he learns to trust himself, to value himself and forget all those bad situations that he has had to live through, especially during his primary school years, which, as we can see, have marked him a lot."
This testimony is made possible thanks to the Association of Families Affected by Fetal Alcohol Syndrome (AFASAF).
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