“The most valuable is unconditional love and support for uniqueness”
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.
Illya Stepanenko, a 16-year-old black-haired autistic teenager from Kropyvnytskyi. During the three years of the merciless war, the Stepanenko family went through wartime hardships, relocation, family separation, and difficult adaptation in a new country. But against all odds, the family continues to unite and wait for Ukraine’s Victory to return home.
February 24, 2022
For a long time, Illya could not understand what exactly happened on February 24th, 2022, because many things that are accessible to the understanding of a neurotypical child are extremely difficult for him to comprehend. On the very first day, his parents said that a war had begun in Ukraine, but the only thing that bothered the teenager was why it was suddenly a school holiday. Was it the quarantine again?
Life taught Illya what war was by demonstrating its horrors.The boy was brought to meltdowns every day by the air raid sirens and new safety rules.The family was very scared, and the surrounding stress and fear got to the teenager, worsening his state. His parents had to make a difficult decision to separate the family, which was unthinkable before the war.
And life changed forever: his father and older brother stayed in Ukraine, while his mother, Alina, and Illya himself were forced to go abroad to Germany. The journey took five days, which was extremely exhausting and stressful for a teenager with special needs.
In the new country, it took the boy about two months to adapt to the new environment – get used to the new surroundings and school, restore his usual rhythm of life at least a little bit, and return to his usual diet.
Unfortunately, everyday troubles and news were not the worst thing that he had to get used to and learn to overcome. Due to the war and forced resettlement to another unfamiliar country, the teenager’s psycho-emotional health was severely affected. For a while Illya did not show any interest or desires, and his mother had to constantly monitor his condition, stabilize his mood, and maintain his confidence and mental balance. It was only later that the boy began to demonstrate some desires, ask about what interested him, and set goals. He often repeats words in Ukrainian and foreign languages that calm him down to some extent:
«Щойно закінчиться війна, ми повернемось додому в Україну…
Wenn der Krieg zu Ende ist, fahren wir nach Hause in die Ukraine…
As soon as the war ends, we will return home to Ukraine…»
It was only in 2023 when Illya was able to meet his father and brother for the first time, when he and his mom came to see his family.
2025
Illya now attends a German auxiliary school for children with intellectual disabilities and continues to learn the language. Unfortunately, the boy has communication difficulties, but thanks to technology and teaching approaches, Illya is overcoming language barriers. His mother Alina, tells us:
“Illya is in the 10th grade, which is a high school, a vocational level. At this level of school, children are taught to perform practical tasks, focusing on individual abilities. Every six months they re-test the students to clarify and adjust SMART goals, discuss them with parents (or caregivers), and agree on realistic ways to achieve them. My son has an iPad with special software for supported communication, which is usually offered for such purposes in the German educational space.”
At the same time, Illya continues to study at the Ukrainian school remotely, carefully allocating his time to it. Keeping up with the Ukrainian school is very important to him. He also attends online music lessons with a teacher from Ukraine and a new teacher at a music school in Germany.
In general, Illya was always motivated to study, participate in family life, and improve his skills. Household chores and preparing family breakfast are a pleasure, not hard work, because these things unite the family and lift their spirits. Illya also takes remedial physical education classes and visits a psychologist several times a week. Playing the piano and singing are his favourite activities to this day. He sang before he could talk, even in his early childhood. He was drawn to music from birth. The teenager has perfect hearing, and when he hears unpleasant sounds (a drill, a vacuum cleaner, a creak, a false note), he feels physical discomfort.
The family hopes that in the future Illya will do well, because the most important thing – understanding the purpose of life – is already there: “When asked by the school psychologist about what Illya dreams of becoming in the future, my son answered: “Happy”. And this is the most sincere feeling, which makes me wonder sometimes, who is truly neurotypical here,” recalls Illya’s mother.
Now, despite his thirst for learning and music, the boy is also experiencing the usual teenage difficulties that the family is trying to overcome together.
“Adolescence is a difficult time for any teenager, and a child with special needs requires special solutions. So we have to go to doctors, psychologists, and therapists. My son was quite sensitive to how he was treated before, but as a teenager, he is even more sensitive and often takes offense to even a seemingly insignificant negative reaction to him or his behavior, which can escalate into a conflict. We try to help him with self-regulation, emotional control, and overcoming anxiety,” the mother says.
Nostalgic feelings are added to the experiences of adolescence. According to his mother, despite the apparent adaptation and activity in Illya’s life, the boy misses home, his father, and brother. Very often the young guy recalls kindergarten and music lessons in Ukraine, remembers the names of all the teachers and assistant teachers in the kindergartens he attended as a child, and says with hope: “When the war is over, we will return to Ukraine…”
