“We don’t need to change the world – we just need to find our place in it, move, and be grateful for every new day”
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.
Maria Nedorosol, a young 17-year-old autistic beauty from Brovary, is a cheerful and inquisitive girl. Maria’s family survived the bombing of their hometown, relocations, and the most unpleasant thing for any parent – the inability to explain to their child why the familiar world has changed and when will the horrors end.
February 24, 2022
Maria found out that the war had started literally from her window. One of the rockets hit a military unit a few blocks away from the house where she lived with her family. Soon after, she heard other explosions, dogs howling, and saw smoke rising in several places. Maria is very sensitive to loud noises, so she immediately realized that something was wrong. Her mother told her that the war had started and that she needed to quickly pack her things and go to her grandfather’s house that had a basement.
Maria’s mother, Victoria, says:
“My daughter did not understand the meaning of the word ‘war’, but she realized that everything had changed dramatically. She didn’t go to school anymore, and had to leave her comfortable room behind. On the evening of February 24th, we planned a visit to the circus, which Maria had been warned about in advance. So the biggest disappointment on the first day of the war was that we were not going to the circus, we were not going to school, and we were not going to sleep at home. Perhaps this autistic perception saved her mind from all the horror that was happening around her, from the tragedy that even a healthy adult mind cannot overcome.”
During the first three weeks of the full-scale invasion, the family stayed in their town. By the third day of the war, to maintain at least a semblance of order, Maria got back to completing her schoolwork, even though an indefinite vacation had been declared. During the air raids, the family hid in the basement. They read passages from the school curriculum between the air raids. Then the outskirts of Brovary saw intense shelling from the Russian army, and the family decided to take the evacuation train to western Ukraine.
“It’s like we’ve been preparing for this trip all our lives! It’s usually difficult for autistic people to change their place of residence and have no plan for the future, but we have always loved traveling by train as a family. So Maria endured the trip in a compartment with nine strangers, a cat, a dog, and a mouse quite easily. For three months, we lived in a quiet village in the Chernivtsi region with extraordinary nature and very welcoming people. The school resumed classes online, so my daughter studied every day and had a clear daily routine. In the evenings, we sat on the porch of the house and sang new wartime songs. We also managed to bring our beloved grandmother out of the occupation in the Zaporizhzhya region, and this added some (even if temporary) stability to our lives. Maria perceived these events as an exciting journey, because we tried not to immerse her in our worries about the general situation and the future. She did not fully realize the gravity of these events, and perhaps it was for the best.
In May we returned home. There was no more artillery shelling, but the air raids were constant around the clock. Whenever a siren sounded, my daughter would immediately go into the hallway, lie down in a beanbag chair, cover her head with a blanket and wait for the all-clear alarm to go off,” Maria’s mother describes the realities of the first months of their wartime life.
However, domestic difficulties are not the worst thing, because they are temporary. According to Victoria, the hardest part was surviving the outbreak of war psychologically. It became immediately clear that it was extremely difficult for Maria to accept the destruction of her familiar world. In addition, three weeks under shelling was too much for a child who is very sensitive to noise and can feel the mood of others. Her emotional state became very unstable: at the slightest irritation, Maria would scream, have flashbacks to all the bad things that had happened in her life, and nothing could calm her down. The autoaggression and aggression that the family had managed to overcome a few years before the war returned. Maria would pinch herself or her mother’s cheeks painfully, squeezing her hands until it hurt. Her obsessive movements and swaying also returned.
Nevertheless, the family has no doubts about Ukraine’s victory, and Maria has been saying this since the first day of the war: “Soon the war will be over and we will go to school,” ‘Soon the war will be over and we will go to the sea,’ ‘Soon the war will be over and we will fly on an airplane,’ ”Soon the war will be over and we will sleep all night.”
2025
Today, 17-year-old Maria continues her studies in the eighth grade, an inclusive class according to her individual educational plan. In some subjects, she needs adaptation, in some – modification of educational materials, and studies basic subjects according to the general education program. She also attends individual therapy and developmental classes at school. Socialisation is the hardest part of school for Maria. Her classmates are used to her; they can sometimes help and provide support, but they notice that she is not very interested in friendships and has a rather limited range of interests, which doesn’t make her popular. That said, she is comfortable not being the star. Her teachers have known her peculiarities for a long time, so she gets the assistance she needs. Since she has sensory hypersensitivity to loud sounds and bright light, it is sometimes difficult for her to concentrate on her studies. Sometimes Maria gets overwhelmed and cannot respond to questions. Then she goes to the school’s sensory room, which has a hammock, a balance beam, and a beanbag chair to recover.
Before the war began, Maria was a fifth-grade pupil in an inclusive class at a secondary school. Initially, the girl studied at a rehabilitation center, but her parents quickly realized that the child should be surrounded by neurotypical children. At the time, her mother Viktoria was studying to become a speech therapist, so she managed to make Maria’s transition to school comfortable:
“It was difficult at first, because autistic children struggle to pick up the pace of school. I also had to switch from being a mom to a teacher. I was responsible for another child with different educational needs, level, and pace.”
Nevertheless, she managed to do it. According to Victoria, five years ago there were only four children with special educational needs in the school, and later their number increased to 35, and almost every class is inclusive. The school now has an inclusive playground and sports ground. The school also has great staff: four speech therapists, an occupational therapist, and a psychologist.
“You can’t demand something and put pressure at once, it won’t help. But when you show kindness and praise, all participants in the educational process begin to listen and improve. And in about a year, everyone in our school understood what inclusion is and got used to it,” the mother recalls.
Victoria considers her daughter’s experience of inclusion to be a happy exception, as she received understanding and help from all sides. Before she came to work at the school, Victoria was involved in social activities at the NGO “Special Family”. The organization appealed to the city council, and it organized the Inclusive Education Program even before the subsidies, allocated funds from the local budget for the material and technical base, equipment of resource rooms, and a bus for children with special educational needs to go to and from school. And just imagine what else could have been achieved in three years if the Russian soldiers had not invaded Ukraine?
Victoria explains:
“The first year after the invasion was particularly difficult. Constant changes of plans, sudden air raids, the need to stop classes and go to the shelter – all this was very stressful. For Maria, as for most autistic children, a sudden change of activity is a real challenge. There were meltdowns, tantrums, and breakdowns. At a certain point, behavioral methods stopped working because cases of autoaggression began, so we had to go to the doctor for medication. Now her condition has more or less stabilized, because we are careful to keep the study load moderate and the day as predictable as possible.
Another challenge is the lack of personal space. For three years now, Maria has been sharing a room with her grandmother, who moved in from the occupation. Sometimes she wants to be alone so much that she tells us directly that it’s time to go for a walk or to the store. The most difficult thing now is sleeping problems. Due to frequent air raids, she has to go to the hallway at night, which disrupts her routine and affects her well-being. During the day, Maria is either tired or overexcited. That’s why we give her an hour to rest after school. As for her nutrition, everything is fine. Before, we always tried to maintain a varied diet, but Maria didn’t have much of an appetite. Now that she has entered her teenage years, she is “always hungry,” and this problem has disappeared.
As a mother, I have also learned to control my state better: I read less news, spend more time walking, listen to calm music, and do sports. We strongly believe that the time will come when there will be no need to invent anything, no need to get used to anything, no need to hide in basements and go crazy with fear that this minute may be the last. We believe that peace will come quickly and our lives will be ours again.”
