"Here is my story – you are not the only one"
How a mother of a child with Down syndrome began to help other children with the syndrome
Now Ekaterina Filonets is fighting not only for Tanya's rights, but also for the rights of other people with Down syndrome in Belarus. She is the chairman of the Down Syndrome. Inclusion. association. We talked about what the association managed to achieve over 5 years of work, what difficulties Ekaterina faced and how her personal experience helps other parents.
"Parents themselves often do not know how to behave with a child with the syndrome"
When Tanya was 2.5 months old, we went to an Early Intervention Center in Minsk. It was the first time there that I heard: "Congratulations on the birth of your daughter!" It gave me goosebumps. It was the first time I realized I was a mother.
Now, when mothers of children with the syndrome turn to me, I first of all congratulate them on the birth of their children. For some reason, people don't know how to behave and what to say when a woman gives birth to a special child.
Parents in their turn often do not know how to behave with the child – what to do and where to go. Our organization is aiming to help them. We advocate for the full inclusion of people with Down syndrome in all areas of society. We do a lot to prevent children with the syndrome from being abandoned in the maternity hospital.
Together with the Early Intervention Centers, supported by UNICEF Belarus, we have conducted training for neonatologists, pediatricians and doctors who work in maternity hospitals on how to properly inform a mother about a diagnosis and talk about it. We have also prepared brochures for maternity hospitals with basic non-frightening information about the syndrome. We have left our contacts so that we could communicate with such mothers as soon as they give birth.
Another goal of the organization is psychological support for parents. We allow parents to feel that they are not alone. When a child is born with the syndrome, many parents think they are the only ones with this problem. That it only affected them. At that moment, I, as a mother who has gone through it, as well as my colleague, another mom with a similar issue, say: "Everything will be fine, really. Look at me. Here is my story. You are not the only one. There are a lot of us. We can get through this phase together."
Here is my story
Tanya was born when I was still very young – 20 years old. It was a planned pregnancy. Both my husband and I were prepared for it: we did all the tests, took vitamins, etc.
All ultrasound check-ups were perfect. I learned about the syndrome only after Tanya was born. I stayed in hospital for pregnancy complications and suddenly Tanya's heart stopped. I had an emergency caesarean section. She was being resuscitated for a very long time, the ALV was applied. There was little chance that she would survive.
I was told about the syndrome and some neurological problems. I understand why: the future of a child with both the syndrome and neurological problems does not look that great.
When we brought Tanya home we didn't understand what to do with her. Now there is a lot of information on the Internet, but it was not the case back then. There were no supportive organizations, and the doctors didn't know much about the syndrome.
I did not try to find the guilty or be hysterical. That's my character: if I encounter some difficulties, it is much easier for me to look for solutions than to panic and be miserable. I understood that I had a problem. I had a child who needed help. So I started looking for any information I could get.
I accidentally found out that there were Early Intervention Centers in Minsk. I was lucky as in one of them there was a place for us. I will continue thanking these people every single time I give an interview. In fact, everything that Tatyana and I have is a great merit of the Center's employees. No one has ever given me such support in my life as these people did. The specialists of the Center gave me an idea of where to go next. Of course, we were working very actively every week for 3 years in a row.
We carefully followed Tanya's health and my psychological condition. We discussed every next step. Thus, we decided that Tanya needed to start interacting in a group – she developed very well. When she was 2 years old, we attended a pre-kindergarten group several hours a day. After that, we decided that Tatyana would go to a kindergarten.
Unfortunately, the Center for Correctional and Development Training and Rehabilitation (CIKROiR) then offered only special groups at a special kindergarten. When Tanya went to a private kindergarten, she made good progress in developing her speech. I saw how important it was for her to communicate with her peers.
They didn't offer me anything, so I managed to arrange a place at a regular kindergarten. I asked the doctor to write her diagnosis not in words but in a special code – parents have a right to do that.
Tatyana went to a regular group with 35 children. There were no special conditions and tutors. I brought a letter of recommendation and statements from the Early Intervention Center and from the private kindergarten and told the educators: "Probably, hiding the diagnosis was not the right thing to do. But let's try, I beg you. If you have any difficulties that we cannot cope with together, Tanya will leave. Just give her a chance."
Everything turned out great. Tanya finished kindergarten together with the other children. There were no issues with parents, educators, or the head of the kindergarten.
The next step was school. I wanted my child to go to a regular class in a regular secondary school. But it had never happened before. I managed to get a referral to an integrated class, but I had to look for the school myself. I visited many schools in Minsk, but the answer was the same: "No, we cannot not agree to this."
It was a lucky coincidence that we found a school. UNICEF organized a conference on inclusion. Directors of different schools and active parents were invited there. I took the floor. I understood that we had a problem, and I had to defend the interests of my child. Tatyana was an active child who needed adaptation in a group. At that time, she was very well prepared for school: she counted, wrote, and read. But nobody but for special schools wanted her.
I really liked School No. 25 at the conference. The director talked about integration. I thought I'd call them and make an appointment. The director then saw me at the reception, smiled and said: "I know why you are here – you want to send your child to our school. Let's try! We don't have such experience yet. But I like your position in life. I think everything will work out."
The teacher talked to Tanya, and then she started studying in a regular class according to the general program. Although in fact she was not supposed to study most of the subjects. We had an issue with an after-school teacher who didn't accept Tanya at all, she saw only the diagnosis in her. There were many unpleasant situations. At that moment I turned for professional psychological help.
After the first class, I finally fully accepted the syndrome. I realized: "Yes, Tanya will be different, she will not be the same as other children. But this is good. That's her thing."
Tanya is now finishing the 9th grade, and I have never regretted my decision to send her to a regular class.
In addition, Tanya finished modeling school, received a diploma, and even worked as a model for some time before COVID-19. She had a contract with a modeling agency and was paid for her work. She even opened the Belarusian fashion week.
Tanya also practices yoga and goes to the gym. She studied DJing, but, unfortunately, due to COVID-19 she couldn't finish the course. She starred in the documentary film "Inclusion", in commercials. She was a torchbearer at the II European Games.
Everything is also good with her personal life – she has a boyfriend. All in all she has a busy life of an ordinary teenager.
"Who else can do it, but you?"
I did not plan to lead the Down Syndrome. Inclusion. organization. I did not see myself either as a leader or as an advocate for someone's interests, except for my child's. I was absorbed by Tanya. My whole life revolved around my daughter and the topic of the syndrome.
But both the parents and the specialists whom I spoke with said: "Ekaterina, listen, you are the best example. Who else can represent the topic of children with the syndrome, but you?"
UNICEF probably influenced my final decision. 5 years ago, a UNICEF Belarus project called "A family for every child" was launched. Tanya and I became the face of the information campaign. I was inspired and decided to take on this responsibility.
Everything did not work out right away: it took us three attempts before we could open the organization. During the first two attempts there were either not enough people (the parents did not fully understand the idea of uniting), or there were some legislative issues (we could not decide on the legal address).
What we managed to achieve
We have achieved a lot in 5 years. About 15 children found their families. They were initially abandoned in maternity hospitals by their biological parents. We worked closely with maternity hospitals, foster homes, and with these parents – and the families took the children back. For me, as a mother, it is the biggest victory.
In addition, children with the syndrome can now go to regular kindergartens almost without any obstacles. The same applies to integrated classes. This is also our win.
Now we are working to ensure that our children can receive professions after school. This year, a partial qualification bill was passed. A person cannot master the specialty as a whole, but will be given an opportunity to master part of the specialty. We will do our best to make it happen.
For example, Tanya really wants to become a cook. But she cannot become one because of medical contraindications. But if the bill works, she can, for example, be trained as a sushi chef or a cold shop worker.
I want to address the parents of children with the syndrome. Try to see the child in your son or daughter, and not the diagnosis. This is the same baby you've been waiting for for 9 months. There is a whole world inside it. Trust me, the moment will come when you will understand. And I am always ready to support you, you can call and write to me any time.