Interview with Evelina and Vlad's mother
Ось переклад українського тексту англійською мовою:
"Could you please tell me if my child has autism?"
"Whenever I have to leave my children with their grandmother, I feel deeply unsettled. I worry terribly. Like any mother, my biggest fear is what will happen to my children if I’m gone," shares Maria Kalmikova, the mother of Evelina and Vlad, two children with disabilities.
Evelina
– Evelina is 13 now. Do you remember the moment when her diagnosis was confirmed?
– Up until her first year, Evelina developed like any typically-developing child. She mimicked many onomatopoeic words. But at one year and two months, she suddenly stopped speaking altogether. Every doctor I consulted told me to wait.
"Just give it some time — she’ll start talking," they all said. But I couldn't just sit and wait. When she was 18 months old, I began actively searching for the cause. We tried countless speech development methods and medications prescribed by various doctors, but nothing helped.
Finally, at the Kharkiv OHMATDYT hospital, they suggested testing for autism — but only because I brought it up. Until then, I didn’t know what autism was or what its symptoms were. I started looking for information after speaking to an acquaintance whose child had that diagnosis.
After reading many articles online, I realized my daughter had nearly every described symptom. At the next appointment with a neurologist, I asked:
"Could you please tell me if my child has autism?"
Eventually, testing confirmed the diagnosis.
– What was your reaction after hearing it?
– I remember the neurologist telling me, after the tests, that she would no longer be following our case and gave me a referral to the medical board to assign disability status.
"Disability? What do you mean? My child is normal!" That was my first thought. I initially refused to go to the commission. I kept researching, connecting with other parents in similar situations.
Meanwhile, I worked tirelessly with Evelina — doing everything I could. We had constant developmental sessions with a speech therapist and defectologist. She attended a specialized private kindergarten, but there was no visible progress.
After a few months, I went to the commission myself to apply for disability status. That’s when we saw a wide range of specialists — a geneticist, orthopedist, psychiatrist, neurologist...
It turned out Evelina had a severe form of autism, profound intellectual disability, complete absence of speech and self-care skills. So, she needs intensive rehabilitation.
– What rehabilitation methods work best for Evelina? And how often can you access rehab centers?
– Before the full-scale invasion, we regularly attended rehab centers in Kyiv, Odesa, and Kharkiv. The specialists were excellent, and Evelina was eager to participate.
Sensory integration, sessions with speech and developmental therapists — these work best in her case, as she doesn't speak.
In 2021, at the Salyut sanatorium in Pushcha-Vodytsia near Kyiv (now closed due to the war), she was engaged all day long. That’s where a speech therapist taught her to say “Mama.”
It was my dream for her to say “Mama.” She says it unconsciously, but she can say it. I ask her to repeat it, and she does.
In Kharkiv, another therapist helped her produce many different sounds. I also taught her to say “pyt’” (drink) and “pat’” (sleep). That’s all she can say for now.
She also has serious posture issues. Her valgus feet caused spinal deformation, so regular massage therapy is crucial.
Due to the stress of fleeing the war from Kharkiv to Poland and the frequent changes in living conditions, Evelina began to have severe meltdowns.
She started hurting herself — banging her head against walls, scratching her face and arms until bleeding, biting her lips. Regular rehabilitation is vital to improve her condition even slightly.
Vlad
– Was your son Vlad also diagnosed with autism?
– We had complications from the day he was born. I had a difficult pregnancy and labor had to be induced. When Vlad was born, he didn’t cry. He was taken straight to intensive care.
The next day, when I tried to feed him, he vomited blood. For four months, we fought for his life.
He had brain swelling, hypoxia, and underdeveloped lungs — even though he was full term at 38 weeks and 6 days.
We were discharged when he was two months old but re-hospitalized the next day with bilateral pneumonia.
He didn’t walk until he was two and spoke very late.
He was a calm child with an intense gaze — sometimes I felt like he was looking right through me.
After Evelina’s diagnosis, I began to suspect that Vlad had not only perinatal and organic brain damage but also autism. That’s when I realized the meaning behind his obsession with lining up objects, his silence and emotional withdrawal.
– How old is Vlad now? Does he attend school?
– Vlad is 16 and older than Evelina. Despite the rough start, he eventually began speaking.
When our oldest son Artem finished primary school, I wanted Vlad to study with the same teacher. At first, the gymnasium didn’t want to accept him, but after much pleading — and because I couldn’t drive the kids to separate schools — they agreed.
Evelina had already been born and needed my constant care.
The academic pressure was too much for Vlad — until grade six he struggled with enuresis and incontinence. He just couldn’t control it. But we eventually managed.
His condition worsened after a traumatic incident on public transport in 2021. On New Year’s Eve, Evelina had a meltdown on a bus.
Vlad and I were trying to calm her when a drunk man violently struck Vlad in the head.
He suffered a concussion and started speaking less, withdrawing further.
Just before February 24, 2022, we had received a referral from OHMATDYT to confirm his disability status. We had gone through the testing process and were supposed to pick up the documents on the 24th… But then the war began. We only managed to finalize his disability status in October 2023.
Life Between Two Countries
– How did your life change after the full-scale invasion?
– On February 24, I was supposed to receive Vlad’s final diagnosis confirmation.
So, we packed our documents, half a liter of water, and a pack of Maria cookies and headed for the metro to get to OHMATDYT.
Our eldest son Artem was with his grandmother outside of Kharkiv. The metro was full of panicked people.
We changed plans and headed to the train station.
It was chaos. I begged the conductor of a train to Yasynya and bought a whole compartment.
I called my mother and asked her to send Artem to the station, but no transport was running. He had to walk, and his phone had broken.
Ten minutes before the train left, he still wasn’t there. I was about to give up, but then I got a call — Artem was on the platform.
We made it to Lviv, exhausted. We had no luggage, just a little water and some cookies, which the kids ate immediately.
From Lviv, we boarded an evacuation train to Poland. Evelina and Vlad took turns sitting; Artem stood the entire time.
The children finally had a proper meal only after two days — in Poland.
– How did the children react to the move and the sudden change?
– The move deeply affected Evelina. She began having uncontrollable meltdowns.
We had to move five times in Poland because of her episodes. This disrupted any chance of stable therapy.
Every move meant a new environment, new specialists, and different methods — and the language barrier made it worse.
Her first severe meltdown happened in November 2022. She banged her head on the wall, pulled out her hair, scratched herself until bleeding, and bit her lips.
She also hurt me and her brother Vlad while I tried to calm her. We were taken to a local hospital and promised psychiatric care, but it never happened.
These episodes lasted for six months. I tried to return to Ukraine — somewhere safer in the west — but couldn’t.
There’s nothing to return to in Kharkiv: blast waves destroyed our plumbing, flooded the apartment, and ruined the furniture and appliances.
Vlad became even more withdrawn.
– Do you currently receive rehabilitation both in Poland and Ukraine?
– Rehabilitation in Poland is very difficult. State specialists refuse to work with Evelina after just one or two sessions.
Her severe autism, intellectual disability, constant stress, and language barrier make cooperation hard.
She probably needs more time to adjust, but that time isn’t available in public institutions.
We’ve done three rounds of paid therapy in Warsaw.
Now we live between two countries, regularly coming to Ukraine for therapy.
We’ve already been to Truskavets twice this year — to the Kozijavkin Clinic.
Evelina responds very well to the treatments. She’s motivated, engaged, and makes eye contact. That’s when you see real results.
Whether it’s massage, speech therapy, or special education — Evelina not only sits through the sessions but follows instructions.
Vlad also shows great improvement after attending Kozijavkin.
We are already booked for September and November and really hope we can go.
We need financial support — I have to cover travel and accommodation expenses alone.
Support from the NGO “EpiProsvita” is incredibly timely and important.
– Your children are with you 24/7. Do you have anyone to rely on in moments of crisis?
– Unfortunately, I can only rely on myself. Sometimes my mother helps. She moved to Poland in March 2022.
But even for her to help legally, we need a notarized power of attorney — around 120 zlotys per month.
Still, it’s not about the money.
Whenever I leave my children with their grandmother, I feel deeply unsettled. I worry terribly.
Like any mother, I’m most afraid of what will happen to my children if I’m no longer here...
Kateryna Novytska
