Iryna Sergienko, director of “Child with Future,” an organization that has been caring for autistic children for 13 years, met the morning of February 24, 2022, in Kyiv. A month after the start of the full-scale invasion, when fighting began in the suburbs of the Ukrainian capital, a few kilometers from her home, Iryna and her autistic brother Misha had to leave Ukraine, leaving their parents behind.
For more than a year now, Iryna has been living in Oxford, a city she has known well since her student days, and as the director of the IGO, she has been actively supporting Ukrainian families of autistic children, participating in various international events and platforms, raising funds and humanitarian aid for Ukraine, and more.
– Remember your first hours and days of russia’s large-scale invasion of Ukraine. What did you feel, what were your feelings?
The kind of feelings I have never known before, and I don’t want to wish on anyone. At first, it was shock from the news and explosions outside the window: my brain simply refused to accept this information. Then it gave way to fear for my life and the lives of my family and friends and the hope that it would all end quickly, because Ukrainians were showing such heroic resistance that the aggressor was not ready for. And then…
Then, perhaps, there was a whole mess of confusing feelings that constantly replaced each other – from the fatigue of being afraid and inner devastation to a burning desire to do as much as possible and help everyone in the world. Somewhere like that, but it’s not exact. We are still in the center of the war, and people still need time and peace to put these things on the shelves…
You know, in the first 2-3 weeks of the war, the main thing for me personally seemed to be learning to balance between helping myself and helping others. It was very important to learn how to help others and at the same time remain in the resource. That’s why the rule of behavior on airplanes in emergency situations “put on a mask for yourself, then help someone else do it” became a key skill. I must admit that I cannot say how well I succeeded, because there are no standards here, but I did manage to do something.
– And when was it decided that the NGO would not suspend its work because of the war?
Well, it was definitely not made in a separate protocol (laughs). It was a default decision, because from the very first days of the war, our entire team’s phones immediately turned red. There were hundreds of calls from people from both the occupied and non-occupied territories. Everyone was interested in the same questions: what to do, where to go, how to evacuate, how to solve household, transportation, bureaucratic issues, how to do it safely, how to calm a child, whom to call… How, how, how?
Of course, most of them knew about the centers of services and support for children with special needs in their cities and regions, but they had no idea where to find these services in places of forced displacement, even within Ukraine. Later, families experienced the same confusion abroad: almost no one knew where to get help for their child. We also received many inquiries from parents whose children were enrolled in our “Child with Future” kindergarten, and together with its staff we dealt with all these situations.
Of course, the war stopped many of our existing and new projects, but after a while we realized that we had become a kind of new coordinating center between Ukrainians and familiar organizations and professionals in Ukraine and European countries who helped them in any way they could…
– …In a 24/7 format.
Of course, because everyone had this format back then! It’s the same now, by the way, although everything has become a bit more structured. We tried to work as quickly as possible and be mobile enough, because bureaucratic processes are slow, and no one can return the lost time to a child in a state of regression, even against the background of the trauma of war. We quickly created a Facebook group called Ukraine autism HELP – міжнародна допомога українцям з аутичними дітьми, which became an important support for many people, especially in the first months of the war.
It was probably the first time we truly appreciated the value of the connections and contacts that “Child with Future” as an international organization has developed around the world over many years of hard work.
– Could you give us an estimate of the quality of support from foreign partners for the NGO during this time?
In fact, we are amazed by the number of people who responded to our trouble. We would like to thank Autism Europe and all the organizations that sent funds to support Ukrainian families through them. It was not only financial support, they took care of a lot of humanitarian issues! For example, Autism Europe member organizations constantly coordinated with us to organize assistance to Ukrainian refugees, offering not only specialized services, but also solving ordinary life issues such as finding housing, food, clothing, etc.
We also express our gratitude to the Jim Foundation, Autism Speaks, Autism Anglia, Stanford University, Autism Unity and many others who helped with information, education and humanitarian assistance.
In general, Europe has taken the biggest humanitarian hit since the outbreak of full-scale war, especially brotherly Poland. We will never forget this and will always be grateful to them.
The situation with the United States and Canada is somewhat different. They are geographically far away, and the number of Ukrainian refugees there is incomparably less than in Europe, so America naturally provided more financial and humanitarian assistance. At the same time, we need to understand that each country has its own peculiarities and problems, which no one has canceled, so we need to treat this with understanding. In Canada, for example, Ukrainian refugees are not covered by the general refugee program, so Canadian volunteers themselves complain that they have to do everything on their own. It is very difficult, but they work, no one gives up. All of them are great!
In general, the local communities, organizations and their ordinary residents who have warmly welcomed and supported the Ukrainians deserve a special thank you. Here in England, for example, the community regularly gathers around churches to help refugees. Schools are constantly organizing events so that Ukrainian children can communicate with their peers, which is very important. People are constantly offering things, material assistance, and services. It’s very easy to come across a bulletin board with announcements of various community activities-picnics, dancing, sports, concerts, volunteering, etc. In other words, people “hang out” without the involvement of the state or the authorities, and for all Europeans, this is a familiar and integral part of life.
But the only country that did not help, remained silent and did not even mention sympathy for our children was russia. Only a few cases of scarce words of support in private messages from some mothers in the spring of 2022 still reminded us that russia exists in this world at all, and then they disappeared. Not a single leader or member of the russian public has said a word to date. But that’s all it takes to say it.
The whole world is fighting for the future of our children, and no russia will ever take it away!
– What problems did people address to INGOs in the first months of the war and have their requests changed now?
In the first, most disturbing months of the war, people were seeking “”emergency” with a bunch of problems that needed to be solved in an immediate manner. In 2023, the topics of requests seem to be slowly returning to pre-war levels.
Parents are now increasingly asking for certain types of autism counseling. For example, families who have received some pieces of information from different doctors and now want to put them together to see the full picture and figure out what to do.
Just the other day, I was consulting a group of German students who study together with autistic people, including Ukrainian students. So, they really wanted to learn as much as possible about the disorder to be able to help their peers with ASD feel better. And there have been more such group requests “of their own free will” over the past six months.
By the way, in May 2023, we presented an interesting survey “The Year of the Great War. The Experience of Autistic Ukrainians Abroad”. It was a survey of families living abroad for a long time. We got a lot of useful results, which we first shared with our partners at Autism Europe and then made publicly available to anyone interested in this topic. I don’t think I’ve ever seen such a survey in the sphere of autism during the war.
– Can you tell us more about the nature of the requests that the NGO is dealing with today, both abroad and in Ukraine?
Imagine, we still get requests from people who are forced to live abroad because their child does not accept the fact of relocation. It is difficult for ordinary people to understand what a child with ASD feels when they are rudely pulled out of their normal life without preparation, forced to adapt to a new place every day, and unable to explain when they will return home. And parents themselves don’t know how to do this, because they have no answers. What can we say about the parents of autistic teenagers… In addition, when adapting to a new life without advance preparation, a child needs to experience and heal from the loss of a familiar life.
And on top of that, let’s just say, there are not quite the usual living conditions abroad. It is very difficult to live under the new rules for more than a year with an autistic child as a guest. People are very afraid that they will be “asked” to go outside and therefore allow the child more than usual, as long as he or she does not shout or behaves well. This leads to a total “addiction” of children to gadgets, fast food, and manipulative behavior in general. Needless to say, there are consequences…
As for the internally displaced persons who have already more or less adapted to their new places, they are more interested in employment-related issues – employment of autistic people, creation of workshops, inclusive centers, preparation for adulthood, etc.
Against this backdrop, a problem that was previously invisible and irrelevant has already begun to stand out – the registration of disabilities for autistic children and their interaction with government agencies during martial law. We have never had a clear and effective system for diagnosing people with mental disabilities (and this includes not only autistic people), and with the war, this issue has become quite acute. In Ukraine, as well as in the EU countries or Israel, there should be a clear system for identifying the abilities of people with special needs and their suitability for wartime. This is a serious issue and a separate topic for discussion. I will only say that we are currently studying this issue with Ukrainian and international partners and will soon, I think, come out with it in the public space.
In general, there are a lot of such “new” issues. War dictates its own rules, and we must be prepared for any challenges.
– A professional question for an autism expert. What factors, in your opinion, distinguish the Ukrainian approach to autism from the European one? What should Ukraine learn from others and what should they learn from us?
First of all, each country has its pros and cons, but in general, the European approach is quite noticeably different in terms of total tolerance towards people with disabilities. In any region or small town on the European continent, you can find public transport ramps, specialized routes in theaters or elevators in museums, friendly staff who are ready to help, let you through without queuing, or solve any issue for a person with special needs.
For example, in England, you can see people everywhere with a green ribbon around their necks with sunflowers on it. This is a special sign of people who have an “invisible disability,” that is, a disability that cannot be noticed immediately. All of our so-called “mentally disabled” people wear these ribbons. Unlike in Ukraine, people with disabilities are integrated into society and live as full a life as possible, communicating with other people, attending various events, and feeling part of society, not someone different enough to be better off not leaving the house. The vast majority of Ukrainian families with children with ASD who have been forced to live abroad welcome the European approach to the perception of people with developmental disabilities.
Secondly, Europe is distinguished by a very tangible policy of accompanying a child. For example, in England, immediately after the birth of a baby, a health-check worker comes to the home to observe the infant, inform parents about health issues, teach them the rules of care, and accompany the family. But at the age of 2, there is a mandatory screening for developmental problems, after which parents receive a referral to a doctor if necessary. The only thing is that in Europe everything is very slow. Waiting is a kind of European national sport, when people are constantly standing in lines and remain calm and balanced, as if it were normal. And this, of course, is a significant disadvantage in our sector, because you can stand in line for months to see a doctor, wait for a speech therapist for a year, losing precious time. For our Ukrainian parents, who are used to doing and getting everything at the speed of light, this is surprising and actually very nerve-wracking.
I would note a fairly good system of support for autistic people with severe forms of the disorder, from medical care to special schools, because not everything in Europe is based on inclusion. The institutions operate on the basis of both public and private programs, some provided by insurance companies. But there are problems with employment, as well as with the level of higher education. While at school a child can safely be inclusive, at university this is not the case. For example, in order to get some support or a place in a special university program, you need to make your way on your own without the help of parents or a support center. This is what adulthood is like.
But the main difference of the Ukrainian approach, and I think the most valuable one, is our focus on the development of a child’s independence and inclusion. What is the most cherished dream of a parent of a child with special needs? Yes, of course, that he or she would go to a regular school, then to university, and finally find a decent job and be able to do without parents who do not live forever. That is why our domestic centers offer services to achieve these very goals. European parents are not very active, except for a long time in litigation with institutions. Ours, on the contrary, would rather protest and get results quickly than go through the procedure for years. Or they will learn to work with the child themselves.
– What, in your opinion, are the main achievements of the “Child with Future” during the war?
Are you pushing me to give an immodest answer (smiles)? Well… The answer will be a bit chaotic, because we have never talked about this with our colleagues, and let it be my personal opinion, okay?
As I said above, the greatest achievement of our NGO turned out to be a huge number of useful contacts in Europe and around the world, which in one way or another have been useful to Ukrainian families. And contacts are specific people, our friends and partners, their friends and partners, etc. And I will never tire of repeating my gratitude to them.
If we talk about some specific things other than those we have already mentioned… For example, we regularly support Marina Kucheryava, who works with internally displaced persons, victims, and children in Irpin and Bucha. We also help the “AVAknavenne chudo” center with food, toys, educational materials, and funds for educational projects. Thanks to Autism Europe, we found funds for the rehabilitation of a child from Mariupol in our kindergarten “Child with Future”. Recently, we have transferred funds to purchase medicines, water filters and other necessities for children affected by flooding in the Kherson region…
We should also mention Maksym Brovchenko, our “little Ukrainian Picasso”, whom we have been taking care of for more than three years now, and who has become a real hero during the war! He paints incredible pictures and raises money to support the Armed Forces and autistic children. During this time, he has presented his paintings to the Commander-in-Chief of the Armed Forces of Ukraine Valeriy Zaluzhnyi, the Pope (thanks to the NGO “Voyatskyy Vyzvol”), and First Lady Olena Zelenska. We organized exhibitions of Max’s paintings in the United States and a number of Ukrainian cities. Max deservedly received an award for volunteering from the President of Ukraine Volodymyr Zelensky.
In addition, we continue to be active participants in the Ukrainian and international information space. All our information projects did not stop during the war, and this is very important! At the very beginning of the war, we published material for the National Autistic Society, actively cooperated with Italian television, which aired a separate program about Ukrainian autistic children, and with the media of other European countries. This work is ongoing.
On our YouTube channel, we are constantly adding content designed to support parents who find themselves in a situation of lack of information and services they are used to. I also recommend that you join our special and regular project “Openly about the difficult”, where our guests talk about how to solve the most painful problems and share their experiences.
We are constantly directly involved in various specialized Ukrainian and international conferences, seminars, and symposia, both online and in person.
And that’s not all, the list goes on and on. And it would seem that a lot of useful things have been done, but we want to do even more.
– Yes, most Ukrainians have the same feeling. And can you say that the NGO has already identified new strategic directions for the next few years?
I’m afraid it’s too early to talk about it. You can see that during the war we have significantly increased the volume of international activities. In Ukraine, the nature of our activities has naturally changed, but not decreased – rather, it has increased. It’s just that the focus of our attention has been transformed due to the war, and there is no getting away from it: it has become more targeted. Like all Ukrainians, we are working for the Victory – this is priority No. 1. Therefore, the question of strategic directions is a bit premature. I can only say that we will all come out of this war stronger and better armed in the broadest sense of the word. And then, I hope, it will be much easier for each of us to achieve important successes and results, thanks to our international partners.
I sincerely believe in this and I am proud of our great people and our country!