“Support in the most difficult times is about realizing, accepting, and supporting each other”
For the International Autism Awareness Day, we are presenting the “Not Invisible and Unbreakable. Stories about the lives and challenges of Ukrainian autistic children during the war” project. With the information support of INVAK.INFO, we are telling the stories of 12 families who have learned to live on after the tragic day of February 24, 2022. The families share their experiences and feelings, secrets of overcoming difficulties in Ukraine and abroad, and each family is united with an irrefutable belief in the soonest and most long-awaited Victory.
Ilarion Lehenchuk, a four-year-old smiling blue-eyed boy, is like an angel in both his looks and heart. The Lehenchuk family from the village of Petropavlivska Borshchahivka has experienced all the hardships of wartime, despair, relocation, and the loss of a child over the three years of the merciless war… But the family continues to fight for their son’s health together, waiting for the Victory.
February 24, 2022
Five in the morning on February 24th, 2022, is a time and date that all Ukrainians will remember forever, because everything changed then, and life went to pieces. Oksana recalls:
“My husband woke me up with terrible news. My courageous and strong man, who has a stoic character and temperament, said the word “war” in a trembling voice. He immediately persuaded me to go to my father in the Vinnytsia region. But that morning I was determined to stay at home, because the family should be together under any circumstances. We slept on mattresses in the corridor because it was safer, and closed the windows tightly so that the light from the lamps did not penetrate outside. And we prayed. We prayed all the time.”
At the time of the large-scale invasion of Ukraine by the Russian occupiers, Ilarion was one year and two months old. He had been speaking in full sentences since he was eleven months old, saying phrases like “Daddy went to work” or “It’s time to feed the cat.” However, when he heard machine gun fire or saw explosions and constant air raids, he gradually stopped talking. The boy was always crying or running to the door, pulling adults with him.
It was simply impossible and irresponsible to watch the frightened children’s eyes, the daily regression, and psychological torment. On the night of March 11th, 2022, the mother took Ilarion, the most necessary documents, and the four-legged furry friend away from home. They returned only a month and a half later.
“I tutored children in math and computer science for free. Unfortunately, the stress was so severe that my son stopped not only talking, but also eating and sleeping properly. He was constantly anxious and aggressive, both to other people and to himself. Ilarion would just fall to the floor or hit his head on the surface, bruising it, pulling out his hair, and biting himself and me. It was a nightmare,” recalls Oksana.
The family’s suffering did not end there, as the Lehenchuk family lost their newborn, Ilarion’s baby brother. He was only a month old, and did not survive due to the negligence of doctors. Such overwhelming grief stunned the whole family, and little Ilarion’s stress, anxiety, and aggression became so much worse.
2025
From September 2023 to August 2024, Ilarion periodically attended a regular kindergarten. The first teacher he got didn’t have the necessary skills to help Ilarion integrate with the other children. So the family decided to transfer their son to a group with another very skillful and sensitive teacher, who immediately took a liking to Ilarion. Her approach helped the boy socialize as much as possible, according to his mother. However, involving the child in a group of other children is not enough. Ilarion was unable to master the kindergarten curriculum. According to Oksana, it was because a child with autism like her son needs a special educational plan and assistance. A good attitude and good socialisation with peers is not enough. You need to be with the child all the time, and explain the same thing a million times to help them understand what is said. Instead, the general education program does not provide for individualized learning, as if an autistic child should automatically become a regular student by mastering the general program with no adjustments. And one teacher for 20 playful and active kids is physically unable to provide full attention to everyone.
The search for Ilarion’s root of his struggles began with endless visits to doctors before the war, but the official diagnosis of autism spectrum disorder only came at the age of four. The fact is, at the age of two and a half, the boy was diagnosed with a rare anatomical pathology – arterio-mesenteric compression of the duodenum, which required surgery. And this pathology was diagnosed at Okhmatdyt during an inguinal hernia operation after six months of the family visiting all the hospitals, listening to doctors’ accusations that the mother was feeding the child spoiled food (the pathology manifested itself in constant vomiting). Unfortunately, such an operation could only be performed abroad, because in Ukraine this was the second case in the last 15 years, and doctors had no experience in surgical intervention. So in addition to his psychological condition, Ilarion was going through an extremely difficult time adapting to a unique disease. He was put on a strict diet. Neuropathologists diagnosed autism at the same Okhmatdyt, after which the Legenchuk family visited various psychologists, psychiatrists, neurologists, etc.
Oksana’s mother recalls:
“At each doctor’s appointment, my husband and I were secretly waiting for the happy moment when at least one of them would tell us about the mistake. But no miracle happened, and our son has autism. The next challenge was to register Ilarion, because a family doctor or private clinic does not have such authority, and the district hospital has a waiting list for a year and a half. So, after several years of searching, we are now registered at the district neurological dispensary. I think that such an attitude towards parents is inhumane. The state has the tools to provide good diagnostics, professionals, and therapeutic interventions, but no one does it. The doctors on duty just dismissed him like a dog, and that’s it. What if it was their child?”
Despite all the difficulties, the family is united and overcomes all the challenges together. Unfortunately Ilarion’s current condition cannot be called satisfactory, and the attitude of society to his peculiarities leaves much to be desired. His mother has repeatedly noticed how children on playgrounds and in stores call Ilarion “underdeveloped”, “inferior,” and “backward”, while the mothers of those children just stand by and smile.
How can a family find the strength to stoically go through ASD, bullying, their son’s unique pathology, the grief of losing their second child, and endless bureaucratic obstacles with constant shelling and bombardment of the Kyiv region by the Russians on top? How to stay sane in extremely difficult family circumstances and the inability to sleep through the night without waking up because of the air raid alarms?
“Art therapy is a great resource for my son. It helps him express his emotions and heal after severe stress. The kid sculpts, paints, and fantasizes, while I help him make it all into a single composition. Our strength is our family. We love, respect and support each other. Ilarion now has a sister, Mahdalena, who is six months old. Some people say that autistic children and children in general are very jealous, but this is not true of our child. He loves his sister very much, takes care of her, and helps me all the time. Especially in the first month after we came home from the hospital, he wouldn’t let my husband and me use the pram. He would push it himself, rock it, and even sing to make his sister fall asleep. And when she woke up and cried, he was the first to run to her aid.
We also love to cook and bake. Although he is very selective in his food and eats only rice porridge and bulgur, he has a taste for other dishes, knows how to decorate, cook, and serve them well,” says his mother.
“Now Ilarion attends a wonderful specialised school called Eva, where we first met qualified, sensitive, and friendly experts. There is a swimming pool, neurocorrection, massage, speech and occupational therapy, physical therapy, and sensory integration. The three of us go to all the classes – me, Ilarion, and his little sister. However, getting to these much-needed classes is a challenge, because public transportation is not very suitable for traveling with a wheelchair and two children with special needs, and sometimes we have to wait an hour and a half for a taxi because no one wants to take the wheelchair and children in. And the nearest bus stop is a kilometer and a half away.”
However, according to the mother, the most difficult thing is the reaction of society to a child with autism. People are indignant, scolding, making comments about the “strange” behavior of a boy who can run around the store or scream because he doesn’t like the color of a taxi and doesn’t want to ride it, but can’t express himself in words. So, in addition to the horrors of war, stress, and concern for safety, Oksana believes that we should not forget about kindness and humanity, and always remember that sometimes things are not what they seem at first sight.
