Childhood has no disability: how the first inclusive space camp in Ukraine works
Summer, rest and camp - probably most children at least once, but faced with a special camp romance. But in Ukraine, these stories are inaccessible to children with disabilities, or more precisely, they have been inaccessible for a long time. Five years ago, Olesya Yaskevych, the author of the NGO See with the Heart, decided to rectify this situation and launch the first inclusive space camp in Ukraine . We talked to Olesya and learned how the idea to create the Cosmotamp came about, why it all looks like first love and how the camp helps to fulfill children’s dreams.
"Basic philosophy - childhood has no disability"
In fact, the idea came quite spontaneously. It was five years ago, in the spring, before that there were no such thoughts at all. And at one point I thought: how come all children have a history of a camp party, because almost all children are in camps at least once in their lives. In children with disabilities such experience is minimal, and in children with complex developmental disorders such experience is absent for a number of reasons. When I talk about children with complex developmental disabilities, I mean those children who, in addition to the basic diagnosis, have others. On the example of my son: he is totally blind, he has mental retardation, epilepsy, autism. And accordingly, no camp would shine for him. And for other children who have the same history, the maximum that shines on them is a summer rehabilitation course, sanatoriums, and all. This thought so grounded me, I thought, stop, why so? It was not so much about my son as about everyone.
I started to monitor what is in Kyiv and in Ukraine. Then, five years ago, there was nothing special. There were separate projects, children and their parents were invited there, it’s like family camps. Also a cool thing, but it’s not a camp for a child. I thought, since there is no such thing, why not do it ourselves?
I told the team about it, they are like this: "as it were, but no, but let’s try, the idea has already arisen, so we are implementing it in any case." And then everything is like in a fog. At that time we had no program, no structure, no staff, we just had a strong desire to make such a space where there will be children with disabilities, children without disabilities, the basic philosophy is that childhood has no disability.
Very quickly I gathered those who wanted to. I wrote a post on Facebook and asked who would like to join and give the child for the whole day. A few days passed and we already had about 20 children. In my ideal world, there should have been 50 to 50 - half children with developmental disabilities and half without. It didn’t work out, then it was 90 out of 10, and that 10% (children without disabilities) are my nephews and staff children.
Then we found a house in Rusanivsky gardens, I was so inspired: summer, river, nature, a separate closed area, you can have picnics and children will be comfortable. Just a week before the start of the camp, a realtor called me and said that the housewife had changed her mind about renting out this room. And tomorrow we had to sign a contract. But the hostess decided not to do it, she was told that these were sick children, they would break everything there and the neighbors would complain.
The story was so stereotypical about children with disabilities that they would come and break everything, spit, and neighbors run away - these are all quotes. For me it was shock content, I did not understand how it is possible. There is a week left, the children are waiting. But an acquaintance of mine has a private kindergarten in Nyvky, she called and said that they were doing repairs there and one wing was free, if we could fit in there, please. We went, looked, everything was fine, and on fishlessness and fish cancer.
"Most parents of children with complex developmental disabilities have a 24-by-7 job."
We held this first camp. It was another challenge, apart from the fact that it was cool, cool and interesting, there was no team, no structure, no program, no understanding of how and what to do. It was like first love, ah-la-le, and then you think, how did everyone survive?
The camp lasted a month. And when by the end of the month I saw that someone had minimal or maximum changes, and even in my child I saw it, I realized that I need to take this story in turn, prepare, prescribe everything and make a clear, structured project.
Many different stories took place during the camp. We have already launched a project, and a boy came to us. His mother called and said that he was 13 years old, he did not walk, did not talk, could hardly hear, had epilepsy, cerebral palsy and he had never been with his peers. She asked if they could come to visit, I said, of course, come. I offered to leave the boy for a few hours, my mother was worried that we would not be able to cope. I say, leave for an hour and take a walk in the park, and if anything, I’ll call you. It was also difficult for him, because everything is unfamiliar: people, smells, voices. But this was the first adaptation and it just took some time.
Then his mother and I agreed that they would come for two hours and so they came to us for a week. Then we agreed that she would leave him for the whole day and go about his business. My mother did not faint a little, she said that we would not be able to cope, it is the same to change diapers, feed, etc. But by some miracle she left him, called every hour and a half, asked if she needed to leave.
She said that in those 13 years she had never had such a full day off. She has already gone to the manicure and the store, only the third hour of the day, and she does not understand what to do, because all life revolves around her son. While the boy was with us, she finished her courses and started making bouquets of fruits and vegetables. And now her son continues to be with her at home, but she has a job, what she can do and earn some money.
This story inspired me a lot, because the truth is that most parents of children with complex developmental disabilities are working 24 to 7. There are no weekends, vacations, holidays. Therefore, this format is when parents bring their child in the morning during the month and pick them up in the evening and understand that there is a clear program, and there are people around who understand what to do if hysterics, assault or so on.
I saw how the children unfold, how interesting it is for them to hang out. Then we did graduation, sat down with the team and thought that we would definitely continue to do so, but not as it was the first time. We clearly stated that we leave and strengthen everything cool, we throw something away, we started to select a team, test it. Such routine work that everything worked like clockwork when the camp started.
"This year we posted a questionnaire and in an hour and a half we had 417 applications"
It so happened that after the first year we became friends with the Novopechersk school, our organization did an educational project with them. And on the territory of Novopechersk school we held the second, third, fourth and this year we will hold the fifth camp. It is in the center of the city, it is convenient to get there, there is a subway nearby, it is a safe and accessible space, you can ride everywhere on a wheelchair.
Our camp is open for a whole month as standard, but the deadlines may be slightly delayed. But we have specially developed such a program. Children need time to adapt and, as a rule, the first ten days are taken by adaptation, and only then the child begins to get high from what is happening, and here it all ends. Therefore, we decided that the camp should last exactly one month for the child to survive all stages. This year we are working from 1 to 31 July.
We have to take no more than 70 children, but this year we have about 100 children - from 3 to 17 years. And this year, for the first time, we have 68 out of 32, more children with disabilities, but also many children without it. And it’s not the children of our team, it’s the parents who consciously write, fill out questionnaires. I think that next year we will be 50 to 50. The
selection of our children takes place in the first two hours, when we are just teaching the questionnaire. This is great, I understand that there is a demand, but there is a minimum number of children. So I thought about how we will expand: either to hold two camps, or to hold in several cities. We will definitely change something next year to accept more children, but we need to figure out how to organize it.
This year we posted a questionnaire and in an hour and a half we had 417 applications, and I need to select only 70, well, can you imagine that? We selected children for 4 days, I dreamed of these children and questionnaires. Be my will, I would take it all, but there are many technical aspects. I understand that the state is not finalizing, since there is such a demand for the camp.
First of all, we look at children with a complex form of disability, these are children with complex developmental disabilities, who usually do not attend schools, kindergartens and some institutions during the year, individual lessons are not taken into account. And we bring such children to social life, they have the opportunity to hang out with peers. Then we look at children with difficult life circumstances. We have children with HIV, or displaced children, children who have had something happen to their parents. Then there are the children of our organization that we work with, for example, from our school.
This year we are very strict so that the child is a whole month. We used to be able to take a baby for a week and a half or two, but this year we realized that it doesn’t work that way. For example, if the camp is launched and the child arrives in a week, it is difficult for him to adapt, he does not get into the process of adaptation and comes when the team is already formed. Therefore, one of the criteria was the families who will be able to give the child for a month.
We have families who come from other cities, specially rent an apartment in Kiev for a month, or live with relatives. We also give the green light to such children, because we understand how important it is for parents, since they come from another city and live here for a whole month.
In our last camp in 2019, we were visited by a family with two children: an adult girl with complex developmental disabilities, who never went to school or kindergarten, and a 12-year-old younger sister. As a rule, we take all the sisters and brothers, and scatter them in different groups, so that the child also had the opportunity to feel this camp party. Because often the brothers and sisters of children with disabilities take on the role of adults, care for, help and do not live their childhood. And this family visited for a month, and then a few months later my mother sent a letter, and the whole team cried. She wrote that, thanks to us and the camp, their family was saved. She and her husband were on the verge of divorce, but this month, while the girls were in camp, they had time for the first time to talk to each other. They went to the movies, theaters, parks, were able to tell each other everything,
"It’s very important for our boys to see how huge the world is and how many different people there are."
Last year, the pandemic had a big impact. In the spring of 2020 , I realized that there would be no camp, because it is a huge risk. Last year we launched an internal small online camp format. Ironically, this story went a long way and then we made an online school for teenagers in Kyiv and all over Ukraine.
We prescribe the camp program in advance. Every day we have thematic, and we do not repeat thematic days from year to year. The days are completely different: from historical days to the day of corn. We have a strict regime and this is important, because we have guys with autism and intellectual disabilities, for whom the consistency, clarity and structure of everything that happens is important. Children know that after charging they go to class, then a snack and so on. During the day they have master classes. We are visited by bloggers, artists, journalists, interesting people who tell something, police, firefighters and others.
One boy had a dream, he wanted to sit in a real Tesla (car brand). We thought, what is this and found a man who has a Tesla, agreed that she should come, agreed with the school, started the car. You would see the eyes of this guy when he was told that dreams come true, here, sit down in Tesla.
Twice a week we have discos: on Tuesdays and Thursdays. On Fridays we have a big camp picnic, the school has a huge stadium, where we have a picnic. We always have such busy days and something is happening that it is simply impossible to single out one thing.
We always invite a lot of volunteers and this is a two-way benefit. It is very important for our children to see how huge the world is and how many different people there are, and that the world is not limited to mom and dad.
"People can look at the pictures, and then they come to the camp and realize that someone needs to wipe the snot there, someone needs to change diapers, and they are not ready for that."
Our team consists of four people. This is me, a psychologist-methodologist, our administrator and coordinator of volunteers, she is a communications manager. But we always recruit a team of curators to the camp, who work with us for a month. I had an idea to recruit people who have never encountered a disability. And even people who have never encountered children come to us and have no idea how to interact with them. We do not aim to recruit special educators and psychologists. This year we have a very diverse team. These are adults who deliberately came, someone took a vacation, someone comes back to us from year to year.
No matter how beautiful it all sounds and does not look in the photos on social networks, this is only one side. The other side is quite difficult morally, physically and emotionally. We are already recruiting a team in March-April. In the first interview, we tell what and how, then many people are eliminated. I honestly talk about everything so that there is no expectation and reality. People can look at the pictures, and then they come to the camp and realize that someone needs to wipe the snot there, someone needs to change diapers, and they are not ready for that and go. It’s hard when someone is in full swing.
We have curators who work in teams with children, but we do not have teams, but "planets", because this is a space camp. And here we have 7 "planets", in each "planet" from 10 to 15 children, 3 curators work with them. We are also recruiting a team of helpers, these are individual attendants for children with complex developmental disorders, those who do not walk, do not talk, do not see, do not hear, and some of them have hyperactivity.
There are still teenage volunteers. It happened by accident. Teenagers aged 15-16 started coming to us to help and it’s great. At one time there was a popular song "Ice is melting between us", then I didn’t even know about its existence, but I look, there is a teenager and a teenager from the camp and they listen to it, and they are cool, they are on the same wave.
We have a week of training for the team before launch. We teach the team everything, talk about the camp, the structure, how to interact with children, what to do in different cases. We finish this training with first aid, and then conduct a mini-interview, see how everything is mastered.
I was not fascinated by the state and state support, so I am not very disappointed. We haven’t got along with the state yet. They know about us. Every camp, one of the important uncles and aunts comes to us, tells us how good we are, can shed a tear and leave.
This is not a cheap story. From the experience of previous years, I can say that this year it will cost 600-700 thousand hryvnia. This includes paying for the work of the team, food, toys, diapers, transfers for families who do not have the ability to bring children, and children are difficult and can not use public transport. We do not pay school rent, but we pay for cleaning, utilities. This year we raised UAH 200,000, and the rest was supported by Agusha.
Author Anastasia Ishchenko
Photo Space Camp
Other news in Media section .
"Basic philosophy - childhood has no disability"
In fact, the idea came quite spontaneously. It was five years ago, in the spring, before that there were no such thoughts at all. And at one point I thought: how come all children have a history of a camp party, because almost all children are in camps at least once in their lives. In children with disabilities such experience is minimal, and in children with complex developmental disorders such experience is absent for a number of reasons. When I talk about children with complex developmental disabilities, I mean those children who, in addition to the basic diagnosis, have others. On the example of my son: he is totally blind, he has mental retardation, epilepsy, autism. And accordingly, no camp would shine for him. And for other children who have the same history, the maximum that shines on them is a summer rehabilitation course, sanatoriums, and all. This thought so grounded me, I thought, stop, why so? It was not so much about my son as about everyone.
I started to monitor what is in Kyiv and in Ukraine. Then, five years ago, there was nothing special. There were separate projects, children and their parents were invited there, it’s like family camps. Also a cool thing, but it’s not a camp for a child. I thought, since there is no such thing, why not do it ourselves?
I told the team about it, they are like this: "as it were, but no, but let’s try, the idea has already arisen, so we are implementing it in any case." And then everything is like in a fog. At that time we had no program, no structure, no staff, we just had a strong desire to make such a space where there will be children with disabilities, children without disabilities, the basic philosophy is that childhood has no disability.
Very quickly I gathered those who wanted to. I wrote a post on Facebook and asked who would like to join and give the child for the whole day. A few days passed and we already had about 20 children. In my ideal world, there should have been 50 to 50 - half children with developmental disabilities and half without. It didn’t work out, then it was 90 out of 10, and that 10% (children without disabilities) are my nephews and staff children.
Then we found a house in Rusanivsky gardens, I was so inspired: summer, river, nature, a separate closed area, you can have picnics and children will be comfortable. Just a week before the start of the camp, a realtor called me and said that the housewife had changed her mind about renting out this room. And tomorrow we had to sign a contract. But the hostess decided not to do it, she was told that these were sick children, they would break everything there and the neighbors would complain.
The story was so stereotypical about children with disabilities that they would come and break everything, spit, and neighbors run away - these are all quotes. For me it was shock content, I did not understand how it is possible. There is a week left, the children are waiting. But an acquaintance of mine has a private kindergarten in Nyvky, she called and said that they were doing repairs there and one wing was free, if we could fit in there, please. We went, looked, everything was fine, and on fishlessness and fish cancer.
"Most parents of children with complex developmental disabilities have a 24-by-7 job."
We held this first camp. It was another challenge, apart from the fact that it was cool, cool and interesting, there was no team, no structure, no program, no understanding of how and what to do. It was like first love, ah-la-le, and then you think, how did everyone survive?
The camp lasted a month. And when by the end of the month I saw that someone had minimal or maximum changes, and even in my child I saw it, I realized that I need to take this story in turn, prepare, prescribe everything and make a clear, structured project.
Many different stories took place during the camp. We have already launched a project, and a boy came to us. His mother called and said that he was 13 years old, he did not walk, did not talk, could hardly hear, had epilepsy, cerebral palsy and he had never been with his peers. She asked if they could come to visit, I said, of course, come. I offered to leave the boy for a few hours, my mother was worried that we would not be able to cope. I say, leave for an hour and take a walk in the park, and if anything, I’ll call you. It was also difficult for him, because everything is unfamiliar: people, smells, voices. But this was the first adaptation and it just took some time.
Then his mother and I agreed that they would come for two hours and so they came to us for a week. Then we agreed that she would leave him for the whole day and go about his business. My mother did not faint a little, she said that we would not be able to cope, it is the same to change diapers, feed, etc. But by some miracle she left him, called every hour and a half, asked if she needed to leave.
She said that in those 13 years she had never had such a full day off. She has already gone to the manicure and the store, only the third hour of the day, and she does not understand what to do, because all life revolves around her son. While the boy was with us, she finished her courses and started making bouquets of fruits and vegetables. And now her son continues to be with her at home, but she has a job, what she can do and earn some money.
This story inspired me a lot, because the truth is that most parents of children with complex developmental disabilities are working 24 to 7. There are no weekends, vacations, holidays. Therefore, this format is when parents bring their child in the morning during the month and pick them up in the evening and understand that there is a clear program, and there are people around who understand what to do if hysterics, assault or so on.
I saw how the children unfold, how interesting it is for them to hang out. Then we did graduation, sat down with the team and thought that we would definitely continue to do so, but not as it was the first time. We clearly stated that we leave and strengthen everything cool, we throw something away, we started to select a team, test it. Such routine work that everything worked like clockwork when the camp started.
"This year we posted a questionnaire and in an hour and a half we had 417 applications"
It so happened that after the first year we became friends with the Novopechersk school, our organization did an educational project with them. And on the territory of Novopechersk school we held the second, third, fourth and this year we will hold the fifth camp. It is in the center of the city, it is convenient to get there, there is a subway nearby, it is a safe and accessible space, you can ride everywhere on a wheelchair.
Our camp is open for a whole month as standard, but the deadlines may be slightly delayed. But we have specially developed such a program. Children need time to adapt and, as a rule, the first ten days are taken by adaptation, and only then the child begins to get high from what is happening, and here it all ends. Therefore, we decided that the camp should last exactly one month for the child to survive all stages. This year we are working from 1 to 31 July.
We have to take no more than 70 children, but this year we have about 100 children - from 3 to 17 years. And this year, for the first time, we have 68 out of 32, more children with disabilities, but also many children without it. And it’s not the children of our team, it’s the parents who consciously write, fill out questionnaires. I think that next year we will be 50 to 50. The
selection of our children takes place in the first two hours, when we are just teaching the questionnaire. This is great, I understand that there is a demand, but there is a minimum number of children. So I thought about how we will expand: either to hold two camps, or to hold in several cities. We will definitely change something next year to accept more children, but we need to figure out how to organize it.
This year we posted a questionnaire and in an hour and a half we had 417 applications, and I need to select only 70, well, can you imagine that? We selected children for 4 days, I dreamed of these children and questionnaires. Be my will, I would take it all, but there are many technical aspects. I understand that the state is not finalizing, since there is such a demand for the camp.
First of all, we look at children with a complex form of disability, these are children with complex developmental disabilities, who usually do not attend schools, kindergartens and some institutions during the year, individual lessons are not taken into account. And we bring such children to social life, they have the opportunity to hang out with peers. Then we look at children with difficult life circumstances. We have children with HIV, or displaced children, children who have had something happen to their parents. Then there are the children of our organization that we work with, for example, from our school.
This year we are very strict so that the child is a whole month. We used to be able to take a baby for a week and a half or two, but this year we realized that it doesn’t work that way. For example, if the camp is launched and the child arrives in a week, it is difficult for him to adapt, he does not get into the process of adaptation and comes when the team is already formed. Therefore, one of the criteria was the families who will be able to give the child for a month.
We have families who come from other cities, specially rent an apartment in Kiev for a month, or live with relatives. We also give the green light to such children, because we understand how important it is for parents, since they come from another city and live here for a whole month.
In our last camp in 2019, we were visited by a family with two children: an adult girl with complex developmental disabilities, who never went to school or kindergarten, and a 12-year-old younger sister. As a rule, we take all the sisters and brothers, and scatter them in different groups, so that the child also had the opportunity to feel this camp party. Because often the brothers and sisters of children with disabilities take on the role of adults, care for, help and do not live their childhood. And this family visited for a month, and then a few months later my mother sent a letter, and the whole team cried. She wrote that, thanks to us and the camp, their family was saved. She and her husband were on the verge of divorce, but this month, while the girls were in camp, they had time for the first time to talk to each other. They went to the movies, theaters, parks, were able to tell each other everything,
"It’s very important for our boys to see how huge the world is and how many different people there are."
Last year, the pandemic had a big impact. In the spring of 2020 , I realized that there would be no camp, because it is a huge risk. Last year we launched an internal small online camp format. Ironically, this story went a long way and then we made an online school for teenagers in Kyiv and all over Ukraine.
We prescribe the camp program in advance. Every day we have thematic, and we do not repeat thematic days from year to year. The days are completely different: from historical days to the day of corn. We have a strict regime and this is important, because we have guys with autism and intellectual disabilities, for whom the consistency, clarity and structure of everything that happens is important. Children know that after charging they go to class, then a snack and so on. During the day they have master classes. We are visited by bloggers, artists, journalists, interesting people who tell something, police, firefighters and others.
One boy had a dream, he wanted to sit in a real Tesla (car brand). We thought, what is this and found a man who has a Tesla, agreed that she should come, agreed with the school, started the car. You would see the eyes of this guy when he was told that dreams come true, here, sit down in Tesla.
Twice a week we have discos: on Tuesdays and Thursdays. On Fridays we have a big camp picnic, the school has a huge stadium, where we have a picnic. We always have such busy days and something is happening that it is simply impossible to single out one thing.
We always invite a lot of volunteers and this is a two-way benefit. It is very important for our children to see how huge the world is and how many different people there are, and that the world is not limited to mom and dad.
"People can look at the pictures, and then they come to the camp and realize that someone needs to wipe the snot there, someone needs to change diapers, and they are not ready for that."
Our team consists of four people. This is me, a psychologist-methodologist, our administrator and coordinator of volunteers, she is a communications manager. But we always recruit a team of curators to the camp, who work with us for a month. I had an idea to recruit people who have never encountered a disability. And even people who have never encountered children come to us and have no idea how to interact with them. We do not aim to recruit special educators and psychologists. This year we have a very diverse team. These are adults who deliberately came, someone took a vacation, someone comes back to us from year to year.
No matter how beautiful it all sounds and does not look in the photos on social networks, this is only one side. The other side is quite difficult morally, physically and emotionally. We are already recruiting a team in March-April. In the first interview, we tell what and how, then many people are eliminated. I honestly talk about everything so that there is no expectation and reality. People can look at the pictures, and then they come to the camp and realize that someone needs to wipe the snot there, someone needs to change diapers, and they are not ready for that and go. It’s hard when someone is in full swing.
We have curators who work in teams with children, but we do not have teams, but "planets", because this is a space camp. And here we have 7 "planets", in each "planet" from 10 to 15 children, 3 curators work with them. We are also recruiting a team of helpers, these are individual attendants for children with complex developmental disorders, those who do not walk, do not talk, do not see, do not hear, and some of them have hyperactivity.
There are still teenage volunteers. It happened by accident. Teenagers aged 15-16 started coming to us to help and it’s great. At one time there was a popular song "Ice is melting between us", then I didn’t even know about its existence, but I look, there is a teenager and a teenager from the camp and they listen to it, and they are cool, they are on the same wave.
We have a week of training for the team before launch. We teach the team everything, talk about the camp, the structure, how to interact with children, what to do in different cases. We finish this training with first aid, and then conduct a mini-interview, see how everything is mastered.
I was not fascinated by the state and state support, so I am not very disappointed. We haven’t got along with the state yet. They know about us. Every camp, one of the important uncles and aunts comes to us, tells us how good we are, can shed a tear and leave.
This is not a cheap story. From the experience of previous years, I can say that this year it will cost 600-700 thousand hryvnia. This includes paying for the work of the team, food, toys, diapers, transfers for families who do not have the ability to bring children, and children are difficult and can not use public transport. We do not pay school rent, but we pay for cleaning, utilities. This year we raised UAH 200,000, and the rest was supported by Agusha.
Author Anastasia Ishchenko
Photo Space Camp
Other news in Media section .