“We started to return to normal life”
A family from Ukraine describes how they settle down in Belarus and what helps them
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“Danger, danger, danger” — Oleg (all names have been changed for the sake of anonymity) covers his ears, walks in circles and repeats the same word. Oleg's world is a separate universe. It is beautiful and infinitely deep, but not everyone understands it. Doctors call this universe “autism.” Parents rarely pronounce this word: they simply love their son, and they try to understand what rules work in Oleg's universe.
For instance, mom Sveta has found out that Oleg hears speech as a text without spaces. The word “Oleg” said in a noisy playground sounds not like the word “Oleg” voiced in silence. She has learned that it is hard for Oleg to understand when people address him. Mom would sing questions so that Oleg would react to them: “Oooooooleeeg, shall we go for a walk?”
While living with Oleg for 17 years, his parents have learned that “rituals” are vitally important for their son: disturbances of the usual routine can provoke serious stress. Explosions, life in the basement without electricity, and Oleg's “danger, danger” are definitely not part of his normal daily routine. The family has moved from Ukraine to Belarus to restore their usual life and maintain all the ties that they have been establishing with Oleg's world for 17 years. We are discussing with mom Sveta, dad Alex, sister Olya and Oleg, how they succeed in this.
Background information
When people are forced to leave their homes in fear for their lives, it is always a tragedy. It is more so for children because they are more vulnerable. They do not understand what is happening. They see their loved ones in fear and despair. And they are completely dependent on adults.
The UNICEF Belarus team, together with its partners, continues to support families with children: families of refugees and migrants. We cannot give them their homes back, but we can give them back a sense of “normality” and provide them with the basic things and services that every child deserves, regardless of nationality, race, religion or other differences.
We provide humanitarian and targeted cash assistance to refugee families with children from Ukraine; we provide psychosocial support through safe spaces for children; we help provide access to education; we inform and refer them to available services in the country. We have presented a tablet PC to Oleg's family so that he can continue his online education until he is back in school. And we have made two money transfers through Belarusian Post (Belposhta): to cover the general needs of children and their recreational activities in summer.
Having a new tablet PC
The words “separate universe” and “cosmos” are often used to describe children with Autism Spectrum Disorders (ASD). This romanticizes the situation a little, and cinematography adds an additional romantic flair to it. Have you watched The Good Doctor or the Oscar-winning movie Rain Man? The main characters in these movies are people with ASD, too. However, they had the so-called savant syndrome: a rare condition when, along with autism, people have outstanding, even brilliant abilities in one or more domains of knowledge, contrasting with the general ASD signs. This syndrome is extremely rare. Much more often, children with autism have non-verbality (they do not speak or react to what is said), fear of harsh sounds and bright lights, lack of self-preservation, tantrums and breakdowns even due to small changes in their environment or daily routine.
Oleg would not speak for a long time. When he was enrolled in school, he knew four words only: mom, dad, Sasha and the nickname of their house cat.
– We were often told that Oleg would not talk at all, — says Sveta against the background of Oleg diligently telling something to his dad in the next room. — They said his tops would be talking through showing pictures. I reviewed various systems on the Internet, studied speech therapy literature and taught Oleg. We would learn two words per six months. I thought that since he learned two, then he would learn 22, and then 122. Reading helped. I taught him to read when he wasn't talking yet. He perceived printed words better. Oleg memorized sets of letters, and then, he memorized how they sounded. Last year, when in Ukraine, he would read books all day long: there were bombs exploding around, but he would continue reading books staying on his wave.
In Ukraine, Oleg graduated from the 9th grade at school; he had his individual educational program. He can write, read, count, and only algebraic expressions are challenging to him. In Belarus, Oleg is offered to enroll in an integrated education class, that is, studying with peers. Parents plan Oleg to enroll at school in September. Now they are choosing a school, visiting various schools, talking to principals and teachers.
Stickers with Oleg's notes, reminders and observations are pasted all over their apartment. Oleg is also constantly learning to understand this world: what rules to follow to get into the elusive word: “normal.” And there are also pieces of paper with carefully drawn letters: these are lists.
— Oleg loves to make lists: he likes to structure everything, — continues Sveta. — He searches for information on the Internet, he takes notes and then he tells us. He does everything very meticulously. We did not take our tablet or laptop with us. Oleg was very happy when UNICEF gave him a tablet PC. Now he reads a lot again: news; he loves Wikipedia very much. He started communicating with the family again.
It is very important for him and for us. All of us feel more relaxed, because our previous life is slowly returning; but this is especially valuable for Oleg. He courageously reacted to all events when in Ukraine. He suffered without many of his usual pleasures: no cartoons, no walks, no sweets. We talked a lot with him; we daydreamed together; we discussed to the smallest detail how we would recover later.
Family assembled
Sveta used to work as an economist-accountant. However, she quit her job to take care of her son. She collected information about autism bit by bit; she was nervous, upset; but every single day she led Oleg forward, step by step.
— You know, we also had to learn Oleg how to look into the eyes of his interlocutor, how to respond to his name, — recalls Sveta. – If he responded, he was surely getting a reward. We learned colors, and he would also get a reward. If he pointed at something with his finger and said its color, we would surely buy this thing to him. This was the bulk of our budget. When we arrived in Belarus, we could not afford many of the things, which had been customary for Oleg before. When we received cash assistance from UNICEF through the branch of Belarusian Post and began to get our salaries, it became a little easier financially.
— We moved here in what had on us. For example, everything I'm wearing now was bought in Belarus, — continues Andrei, Oleg's father. — The same story is about Oleg's items. We took his favorite toys only. We had to buy shoes, felt-tip pens, clothes, and our apartment was empty: we had to buy furniture, a microwave. We plan to go to the cinema: we used to go to the movies often. Oleg endured for a long time; he understood we had no money, and we couldn’t buy him everything he had been used to. And now he is very happy.
While we are talking with his parents, Oleg brings his toys to show them to us. Today, his favorite is Winnie the Pooh. In a world that has changed dramatically for Oleg over the past year, such things bring stability. He feels comfortable, secure and predictable when he has them.
Oleg's family takes care not only of things. They take care of everything, even four-legged friends. After living in Belarus for six months, they managed to reunite with their Ryabchik: a spotted setter. The eldest daughter was able to pick him up from their home in Ukraine, where he was faithfully waiting for his owners, and she brought him to Oleg. The daughter joined the family in Belarus a little later: she continued her studies in Kyiv for some time.
Now the whole family is together; life is gradually getting better; and they can make plans again, at least for the coming months.
— Using the allowance for summer recreational activities, we plan a trip around Belarus. Even going to the playground was a whole journey for us before. Oleg needed rituals, otherwise he would scream, he would throw a tantrum. And now our son really wants to communicate with people. He says: “Let's go here,” “Let's go there.”
Now Oleg makes his travel plan for Belarus. He wants to see Minsk, Brest, and Grodno. He carefully looks at the map of Belarus on his tablet, selects cities, reads about them. He even types “sights of Grodno” in the Wikipedia search panel. And he looks at the pictures: castles, temples, zoos, a circus. We are glad that he is happy, that he no longer repeats the word “danger.”
