"Scream, squeak, whistle!": how recreation for children with autism is organized in Kherson region
On June 18, the world celebrates Autistic Pride Day. We tell the story of a family that created a special place in Ukraine where children with autism spectrum disorders and their parents can relax and take part in special training, and they’ve done it twice. Why and how? Find out in the Rubryka article.
With the beginning of summer in the village of Prymorske (former Bilshovyk) in the Kherson region, dozens of boarding houses and recreation centers open their doors to holidaymakers. But, among them, there's a place with a special atmosphere: a small boarding house with the simple name "At Haidai's." For the third year in a row, families with children who've been diagnosed with autism spectrum disorders—ASD—come here for vacation.
"Your child has autism" — when parents hear these words from doctors, their lives take a sharp turn and change forever. Natalia Haidai's life also changed. She's a mother of two, a banking specialist, and was a Kharkiv resident at the time.
There's nothing wrong with the diagnosis itself, you can live with it. Of course, many have to leave work because a child with autism requires extra care and cannot stay home alone. But in general, a child with autism is just a child. They, like other children, need understanding, attention, and love. Besides, the main task of parents is to decide on the child's further education and development, help develop the potential to the maximum and provide comfortable conditions that wouldn't irritate the sensitive psyche of the child. Summer vacation is another problem faced by parents of children diagnosed with ASD.
"We naively hoped that everything would somehow settle down and come back to normal." The beginning of the path
"When our daughter Masha was diagnosed with autism," says Natalia Haidai," the question arose about her rehabilitation. My husband and I had the idea to leave the metropolis with its hustle and bustle and settle by the sea, where there's peace, nature, clean air, and dolphins." Having made the decision, Natalia and Valentin Haidai resigned from the prestigious firm, sold the Kharkiv apartment, and with this money, moved to Crimea, to Koktebel.
"At one of the workshops for children with autism, we met a team of Kyiv psychologists who've been working successfully with families with children with autism for a long time and helped them develop," Natalia recalls. "We invited them to Koktebel, and we spent 7 intensive courses together in three years: 4 summer ones and 3 winter ones. It was a full firework display of projects, creativity, new friends, and like-minded people. We met more than 300 families raising children with autism, from all over Ukraine and, at that time, still seemingly friendly Russia. We learned to interact with such children, discovered new talents in ourselves and our children. In class, everyone sculpted, drew, and generated new ideas. It was then when we realized that autism was not about loneliness. Children with autism need to communicate no less, but often, even more than neurotypical children."
After the annexation of Crimea, the family was faced with the question of how to live further. "We naively hoped that everything would somehow settle down and come back to normal. We tried to conduct intensive courses on our own, looking for specialists and like-minded people. We learned to conduct classes ourselves and created a space, directed performances and looked for horses for hippotherapy. Interesting people and well-known specialists in sensory integration, floor-time, ABA therapists, neuropsychologists, specialists in Tomatis therapy, and psychotherapy came to us. Of course, we got new and interesting experiences, but at some point, we realized that nothing would be the same."
Natalia says that emotionally and psychologically they couldn't get used to and endure the fact that they began to live in the occupation. Constant stress provoked the deterioration of the mental and physical health of all family members. At every step, they had to catch their words and facial expressions, restrain anger when looking at Russian flags, try not to hear conversations on public transport, about what a wonderful life would soon begin in Crimea as part of Russia. All the strength, so necessary for Masha's rehabilitation, went to hold on and not fall apart. Psychological pressure and ideological pumping were terrible. The last straw was the words of his eldest 14-year-old son, who came home from school and said he would go to protect his family even in Syria.
Again, everything from scratch
For about a year, Natalia and Valentin were looking for a new place to move to. At the same time, the idea came up to arrange not only their own summer "residence" on the coast but also a small homey boarding house, where you could invite a family with children with autism. They liked the village of Prymorske for the spacious, clean beaches and wilderness. In Koktebel, the house was in the village's thick and neighbors often complained of children's screams. They even collected signatures to ban the family from holding classes for children with autism. Prymorske gave a chance for a quiet pastime away from sensitive neighbors, discos, and crowds of tourists.
Here, on the shores of the Black Sea, the Haidai family first bought 6 acres in a clear field and built 2 wooden houses. After selling the apartment in Feodosia, there was enough money for 1 more plot of 6 acres and 2 old trailers. The house in Koktebel was never sold… So they had to start all over again, almost from scratch. Having arranged the territory on her own, Natalia launched a Facebook page, where she invited other parents raising children with ASD to rest in Prymorske.
"Scream, squeak, whistle!": why a separate boarding house?
Parents of children with autism spend almost all their time with their children. Sometimes the mother doesn't have the opportunity not only to work but also to pay attention to herself and even get a good night's sleep. Due to the peculiarities of the psyche of children with ASD, recreation in crowded places, including at sea, generally turns into a tremendous problem. And for people around, it's often difficult to understand that, for example, a teenager doesn't respond to communication not because he wants to humiliate someone, but because he cannot come into contact with a stranger. He speaks loudly, and waves his arms not because of his poor upbringing, but because he manifests joy. He crams himself into a corner not to attract attention, but because the world suddenly becomes physically unbearable and painful.
The "At Haidai's" boarding house is located a little away from crowded campsites and boarding houses, in the center of a desert country block. "Scream, squeak, whistle! No one will say a thing," Natalia laughs. In the houses, there are isolated bathrooms, hot water, and air conditioning, equipped summer kitchens. Holiday prices are very affordable, and for special families, they're even lower by 20-25 percent. The distance to the sea takes 6 minutes. The beaches are sandy, spacious, the sea is shallow and warm, what children need. There's a lot of free space for active games, sports equipment, educational and board games, toys, Lego, puzzles, supplies for creativity, clay. It's all free. Parents usually offer activities themselves, and the owners take the initiative because moms and dads of special children know everything! One can rent a horse from locals for hippotherapy classes. A library of children's books and books on autism collected by the hostess is available for free.
"We're very happy when in the summer we have a company of the same children as our Masha, girls, and boys with autism. It's more fun to go to the beach together, exercise in the morning, and play board games or do needlework. In 2018 and 2019, our old friends-psychologists from Kyiv visited us again and conducted intensive courses," Natalia Haidai continues. "This year we're expecting them again. These courses at one time helped our daughter with development, and our whole family in the diagnosis and recovery from depression. Therefore, I actively promote this team and do my best to help conduct intensive care. Parents began to inform each other about our boarding house and every year the percentage of families with children with autism or other developmental disabilities coming to us to have a rest is growing. They also come with children with cerebral palsy or Down syndrome. For example, last year, out of 36 families who rested with us during the summer, only 4 were with normative children. Many families, in addition to children with autism, have siblings, and we're very happy to have them interact with each other. This creates an atmosphere of inclusion and promotes unobtrusive communication of children with different types of features and without.
"Of course, 2 houses and 2 vehicles are only 6 rooms. And we can not satisfy everyone," the hostess of the boarding house sighs. "This year we had to refuse to hold two more intensive courses due to lack of space. And we would very much like to expand. I still dream of holding autumn and spring vocational express courses for young people, for example, in landscape design, ceramics, furniture production, or hotel business. As well as a joint New Year's meeting. This requires heating and additional premises for dancing and physical education, a workshop, a stationary kitchen, and a dining room."
Now the Haidai family spends the winter in Kherson. There Masha goes to school, dances, and does karate, and is engaged in a pottery workshop and theater studio (inclusive theater based on the Kherson regional library). Natalia runs a puppet theater studio for teenagers with autism.
In the far-reaching, strategic plans, they want to create a settlement with supported housing for adults with autism and other developmental disabilities: "After all, our children are growing. Our daughter Masha will be 16 years old this year. And such a settlement will be an opportunity to live among like-minded people, be professionally accomplished, and spend leisure time comfortably. We really hope that our house in Koktebel will still find a buyer and we'll have free funds to make this dream come true."
*** Autism (Autism Spectrum Disorder) (ASD) is a condition that results from a developmental disorder of the brain and is characterized by a congenital and comprehensive deficiency of social interaction and communication.
The WHO estimates that 1 in 160 children has one of the autism spectrum disorders.
In 2020, the US Centers for Disease Control and Prevention published new statistics: autism spectrum disorders occur in every 54th child, which is 10% more than in 2018 statistics. Autism is three times more common in boys than in girls.
More than 7,000 children with ASD are officially registered in Ukraine. However, representatives of non-governmental organizations dealing with this issue claim that, in fact, this figure is much higher.