Natalia Ostroglyad: "We try to cut off small pieces of this loaf of life and savor it"

From the first days of the full-scale war, civil society organizations of people with disabilities (CSOs) have been involved in helping the victims. There are many women among the leaders of CSOs who are doing the impossible to help Ukraine. The project "Strengthening the Leadership of Women with Disabilities in Gender-Sensitive Humanitarian Response in Ukraine", implemented by the National Assembly of People with Disabilities of Ukraine (NAPWD) and funded by the United Nations Women's Peace and Humanitarian Fund (WPHF), tells the story of these women.

Our next heroine is a resident of Zaporizhzhia Natalia Ostroglyad. She is the head Public organization "Zaporizhzhia regional organization "Autism. Conscious Parenting" (hereinafter referred to as the NGO "Autism. Conscious Parenting" (the Organization is a member of the NAIA).

Natalia was born and has lived in Zaporizhzhia all her life. Her eleven-year-old daughter Victoria has autism, and creating a better future for her was one of the impetus for her civic engagement. Before that, Natalia worked her way up from an accountant to a banking specialist. She gave birth to a daughter, whom she raised according to the principles of Dr. Komarovsky, who encouraged her to be proud of her child, respect him or her and bring him or her up in family values. Here is what Natalia says about her difficult motherhood and family values:

"For me, family values are about respecting, valuing, and protecting each other. This is exactly how I raised my daughter. My mother was the first to notice that something was wrong with the child, and when my daughter was 2 years and 11 months old, my mother made an appointment with a child psychiatrist. Of course, I went to the appointment to hear that the child did not have autism, but the diagnosis was confirmed. And for me, as the Americans say, "there are no problems, there is a solution." Therefore, it was on November 21, 2013, that my acquaintance with the world of autism, disability, and tolerance began. And in 2014, I went deeper into the child's education, got to know him again, because I realized that I needed to understand him better. We worked hard. And in 2016, I started my journey as a public figure."

Natalia realized that autism had no cure. She was interested in psychological courses and support groups and started looking for similar ones for mothers of children with autism. It turned out that in Zaporizhzhia at that time there were short-term attempts to bring together mothers of children with autism, but they were unsuccessful and, as it turned out, most parents had not overcome, lived this experience, realized and accepted their children completely, regardless of the diagnosis. Natalia Ostrohlyad continues the story:

"In 2016, one of the centers for children with autism held an introductory meeting for parents, and I met other parents there. Some of them became active, and then April 2, World Autism Awareness Day, was approaching. And we realized that we had met on March 1, so we had about a month to prepare an information campaign, because we realized then that this was not a holiday but an occasion to draw attention to this problem, to children and their parents, to education and the future of our children. At that time, my child was already attending a local rehabilitation center that had problems with the repair of the premises, and it so happened that I received a call from that center and was invited, as an active and conscious parent, to talk to representatives of the deputy commission that was to visit the center. It was on March 20, and I realized that this was my chance."

At that meeting, Natalia and her associates shared their needs and problems with the deputies and suggested that the city hall be illuminated in blue on April 2. On ordinary days, the city hall was illuminated in the colors of the national flag, so all they had to do was not turn on the yellow color. Together with T. Korablina's Center for the Development of Children with Autism and Zaporizhzhia City Hall, they also created an information poster that informed that one in 68 children is diagnosed with autism. Since then, for 5 years, Natalia and her like-minded people have been holding information campaigns until April 2, during which they have been delivering information on various autism-related topics addressed to parents.

The organization "Autism. Conscious Parenting" developed in two platforms - together with the Charitable Foundation "Caritas Zaporizhzhia" (hereinafter - CF "Caritas Zaporizhzhia"), in whose premises live meetings were held, and the Facebook community "Autism. Conscious Parenting", which was originally planned as a regular local group addressed to residents of Zaporizhzhia and the region. But then it turned out that the group was being joined not only by participants from different regions of Ukraine, but also from other countries, such as Georgia or Italy. Now the number of views from Poland has increased, as many parents of children with autism have evacuated there. Natalia Ostroglyad talks about the community's activities on Facebook:

"My child has been working with a psychologist practicing ABA therapy since 2014, and these sessions did not stop during the COVID-19 pandemic or the war. I understand that individual sessions are good, they develop communication between a specialist and a child. But this is a child's communication with an adult who consciously treats the child with positivity and tolerance. However, once in the circle of their peers, our children with autism usually do not know how to make friends, how to make friends, how to communicate - to respond to an offer or to refuse. That is, the moments that ordinary children work out in kindergarten or in the first grades of school, our children experience them differently, because they usually do not have friends around them, and few have other brothers or sisters. That's why our children need to be taught communication, even etiquette, so that they can feel part of society. In 2016, my daughter's psychologist, Oksana Stepanivna, suggested that we attend special communication groups, where 5 children with autism gather and she teaches them to play ordinary board or outdoor games that we usually know from the yard. She also teaches them to ask each other questions, answer these questions, and do it correctly, so as not to get into an awkward situation. I saw that my child became more open to society and more sociable after these classes. But some families don't visit this specialist, so certain elements of the exercises she does can be done based on the experience of mothers."

So, Natalia and other mothers turned to Caritas Zaporizhzhia and asked for a psychologist to conduct self-support groups with their children, so for several years they met in the format of a support group for parents with autism. Then they finally provided a psychologist and a room at the Caritas Zaporizhzhia Charitable Foundation, where children learned to communicate in a playful way for one hour. This is how the "Socialization Studio for Children with Autism" was created. On Facebook, information about the studio's activities is posted under the hashtags #Studio_of_Socialization_of_Children_with_Autism and #Studio_of_Socialization_of_Children_with_Autism_Online. Over time, the name and hashtag changed: #Studio_of_Socialization_of_Youth_with_Autism and #Studio_of_Socialization_of_Youth_with_Autism_Online. Natalia also helps parents from other regions to join:

"We take pictures of the classes and the schedule. I try to post each lesson both online and live, on my page, and then duplicate it to the group, and sometimes to the organization's page. This allows parents, for example, from Lviv, to get together as a group of three moms and see where we started by the hash tag. You can simply take the schedule and follow it with your children. You can adjust and control it based on the children's development plans and their initial plans. And then you can go to the city hall or the district department of education or social policy and ask for at least a small room for one hour once a week. And it does not require a lot of money. Resources are not always money."

Experience is also a valuable resource. Both Natalia and Autism. Conscious Parenting" are willing to share it. For example, in Enerhodar, after getting acquainted with the materials of the classes of the "Studio for the Socialization of Children with Autism", people rented premises, organized the same classes for children, and involved psychologists and speech therapists. Looking at the experience of others, parents realized that they were not alone.

In December 2016, Natalia Ostrohlyad was invited to Kharkiv to attend the first meeting of the All-Ukrainian Forum "Parents for Early Intervention". During this event, she got acquainted with the Forum and the National Assembly of People with Disabilities of Ukraine. In January, the national coordinator of the All-Ukrainian Forum "Parents for Early Intervention" Alyona Skrypko visited Zaporizhzhia, organized a press conference and other events that publicly marked the beginning of the early intervention movement in Zaporizhzhia region. Thus, the organization "Autism. Conscious Parenting" organization has another area of work - the introduction of early intervention services in Ukraine.

The activities of the public organization "Autism. Parents for Conscious Parenting" is based on cooperation with parents of children and now young people with autism, as well as with other public organizations and charitable foundations, such as Next up is Natalia Ostroglyad:

"We work in two areas: early intervention - we write projects, lobby, and advocate for it in Zaporizhzhia region and our socialization studio, which has been operating for 5 years now at the premises of Caritas Zaporizhzhia. From the very beginning, I realized that I needed to have the courage to try. I tell my parents: "Make your child trust you, and when other parents see that you and your child have a more or less favorable, kind and warm relationship, they will reach out to you and believe you." Not everyone can attend the meetings in person, as some of them have moved away - to Poland, Germany or Italy - so they join online. The Internet was a lifesaver for us during the Covid-19 pandemic. Now we don't hold live classes, they are conducted by a Caritas specialist, but I ask him to keep the format we have introduced, and also ask him to introduce innovations when we have ideas for introducing new skills for children. Now they are teenagers. Although they are children to us, if we want society to perceive our children as teenagers and future members of society, we have to perceive and call them that way ourselves. That's why our studio is now called the Studio for the Socialization of Youth with Autism. We need to bring the passport age closer to the actual age.

I understand that people need to be moved, and our moms have a motto: "Let's try." This is what I tell all parents who come and say, "I would like my child to buy ice cream for 20 UAH." "Let's try," I say. But it's easy to formulate, but to implement... That's why we try to do everything gradually, in small steps. Our parents become aware of themselves, aware of the possible future of their child, aware of the most important thing - that the family and the child have a quality life. Socialization is a somewhat generalized concept, but if a child can go to a certain place, has 6 or 8 friends, it is already a lot. That's why we try to cut off small pieces of this loaf of life and savor it."

The organization "Autism. Conscious Parenting" organization has a lot of plans and dreams. For example, Natalia is already thinking about separate housing for children who grow up, looking at modular houses and gradually planning to create training housing in one of them, where the skills of living with autism will be practiced not in a family where everything is familiar and everyone wants to help, but so that the young person can provide for himself in separate housing.

However, in addition to plans and dreams, life also brings challenges. Since February 24, 2022, the whole of Ukraine has been living in a whirlwind of war. Some people are living under occupation, others have become refugees or internally displaced persons, and others, living in relatively peaceful areas, are trying to continue their lives and help those who need it most. Also, projects that were successfully operating before the war need not only material but also moral resources to continue. For example, there were three early intervention teams in Zaporizhzhia Oblast, but about 2/3 of Zaporizhzhia Oblast is now under occupation, and many others, such as the Preobrazhenska community, which had one of the teams, are on the front line. Because of this, the early intervention center there cannot fully operate. Therefore, the urgent question is to continue early intervention activities, despite all of the above, as well as the fact that some specialists have evacuated, including abroad. "Autism. Conscious Parenting is negotiating with the All-Ukrainian Forum "Parents for Early Intervention", of which this NGO is a member, to keep the topic of early intervention in Zaporizhzhia region on the agenda. Next up is Natalia Ostrohlyad:

"In our worldview, early intervention is the first stage of inclusion. We understand that we need a basis for a successful start for children with special educational needs. We are preparing society to accept these children, to accept diversity. As Larysa Tatarinova said, "The norm is diversity." This is exactly what the norm is, but it is usually believed that the norm is some kind of framework. We need to change our worldview. We need to cultivate a culture of relationships, because there is a lot of terminology and different rules, but there are common human rules - the right of a person to the life he or she wants, the right to have his or her own opinion, respect for other people's opinions and property. All this is laid down in early intervention. This is also part of accessibility and inclusion."

On February 24, Natalia Ostrohlyad, like many other Ukrainians, woke up to a new, cruel reality of war. She didn't want to leave, at least not until the authorities in Zaporizhzhia officially announced the evacuation. Natalia Ostrohlyad talks about her feelings these days:

"We tried to think soberly. Although there were repeated invitations from different sides to leave, I resisted: "Why do I have to go somewhere? Why?" Basically, the anxiety bag is packed and every month I go through it. We follow news channels and bloggers, including local ones. We understand that despite the proximity to the frontline, there are so many people in Zaporizhzhia now that it is really difficult to occupy. It was important for me to preserve the organization, our parental community, so from day one, in our chats, I asked every morning: "How are you? Where are you? How are you feeling?" Someone would fall into a stupor, and I urged them not to be silent and just write "We're fine, we're fine."

When I notice that one of the mothers "drops out" of communication, I actively ask what happened. After all, we have experience with online meetings during and after the COVID-19 pandemic. I say, "What prevents us from holding our meetings online? Lack of resources? But this is for the child. The mom just needs to turn on the zoom and step away." We didn't interrupt our online meetings, because it was us, the adults, who changed our circumstances. Our children are very anxious due to their diagnosis and have already lost a lot: live classes, rehabilitation - a lot of things have closed, so we need to leave the child at least access to online meetings. Fortunately, everyone always had the Internet and I encouraged them not to lose touch with us. In addition, we used to hold online meetings only for children, and with the outbreak of war, after children's classes, we started communicating with mothers. I joke, I try to pull them back into the reality of the here and now, because it's very easy to get depressed.

A new family joined the organization "Autism. Conscious Parenting" organization was joined by a new family at that time - internally displaced persons from Orikhiv. They were in great need of housing. During one of the online meetings, they met a family that had evacuated to Poland, and this family, having learned about the problem of their new friends, invited them to live in their abandoned apartment. This is a great example of mutual assistance and support. And this is not the only case of helping those who are forced to flee the war. Thus, the NGO "Autism. Conscious Parenting organized a temporary stay center - a transit apartment where families who have just arrived from the occupied territories in Zaporizhzhia can spend the night in order to catch their breath, rest and continue the evacuation. A volunteer, co-founder of the NGO "Autism. Conscious Parenting" NGO, Serhiy Pishchulin, is helping with all this. Natalia Ostrohlyad says:

"We are contacted by people who either live in the occupied territories or have learned about us through word of mouth thanks to many people in the region with whom we maintained relations in peacetime. They find us and say: "We will be there then and there." Serhiy meets these people, settles them in the apartment and arranges when to pick them up. We try to help the family continue the evacuation route, if necessary, we contact various volunteers or look for the best option where we can transfer this family with the child. At the most, people stayed for two nights, and usually people stay overnight to wash, sleep, and rest. This is what Sergey does, I don't even see all the families. This is to avoid disturbing and traumatizing people once again. We do not even take pictures of these families. These people have already suffered enough during the trip. It happens that buses stay near Vasylivka for several days, so it's hard even for adults with a formed psyche, let alone children with mental disabilities. In that apartment, there is a small first aid kit with sedatives, earplugs, and a quiet and dark room. Now some families also go with their grandmothers. So, after they have rested and slept, Serhii picks them up and, after a preliminary agreement, takes them either to the bus station or to the train. Since the beginning of the transit apartment, 23 families have visited it, 52 people, including more than 25 people with mental disabilities, including autism and Down syndrome."

The activities of public organizations that care for people with disabilities are almost impossible without the help of those who care - both from colleagues from other organizations and government agencies, as well as international organizations. About partners and friends - Natalia Ostrohlyad:

"The National Assembly of People with Disabilities of Ukraine helps us a lot, as it has set a very high standard for NGOs. Larysa Baida conducted a training for civil servants on early intervention. The organization of seminars and the overall work of the team of the National Assembly of People with Disabilities of Ukraine is always at a high level, often inaccessible to some other organizations. We actively communicate with both the NAPDU and its member organizations. Thanks to the Assembly and the early intervention movement, a circle of like-minded people has formed around me.

We received help from such foreign organizations as HealthProm (UK) and Inclusion Europe. In April, Inclusion Europe transferred some aid to us. We used this money to equip and maintain our transit apartment before we started working with the National Assembly of People with Disabilities and the United Nations Women's Peace and Humanitarian Fund."

Natalia Ostrohlyad and the NGO "Autism. Conscious Parenting" continue their activities for the benefit of both people with mental disabilities and the whole of Ukraine.

"I want our young people to be more independent, so we need to help them somewhere, and not interfere with them somewhere. I am better known in other cities than in Zaporizhzhia. But I don't claim to be a crown. I just want happiness for my child and family. Ukraine needs to appreciate itself more, because we really have a lot of good things, we just need to get rid of the inferiority syndrome. When I think about our Ukrainian women, I realize - God, what do we need? Just that nothing flies and there is peace. And we will overcome the rest."

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The project "Strengthening the Leadership of Women with Disabilities in Gender Responsive Humanitarian Response in Ukraine" aims to strengthen the leadership and participation of women's civil society organizations - CSOs and networks of women with disabilities and women with children with disabilities - in gender responsive humanitarian response.

The United Nations Women's Peace and Humanitarian Fund (WPHF) is the only global financial mechanism dedicated exclusively to supporting women's participation in peacebuilding and humanitarian response. The WPHF is a flexible and responsive funding instrument that supports quality interventions that build the capacity of local women to prevent conflict, respond to crises and emergencies, and seize key peacebuilding opportunities. The WPHF is an innovative partnership between Member States, the UN and civil society, with all stakeholders represented on its Global Funding Board.

For more information about the Women's Fund for Peace and Humanitarian Assistance and its work around the world, please visit the Fund's website: www.WPHFund.org and www.WPHFund.org/

Photos provided by Natalia Ostrohlyad