“We were at the Hermitage today”
Svetlana lives in Nizhny Novgorod, her 24-year-old daughter Julia has autism. In order not to interrupt classes at the Naked Hearts family support center, Julia continued to study online. Five times a week, she gets in touch with teachers and her group in the Zoom application.
“On the first day of online lessons, my daughter asked me whether she should dress up, as usual before going to the center,” Svetlana smiles. “Before the start of classes, she, as before, combes herself, paints her lips, because she wants to like and look beautiful.”
The center’s specialists tried to maintain the most familiar schedule and class for their students with autism spectrum disorder (ASD). For example, children continue to make social exits - to visit cultural places as a group.
“Today we were at the Hermitage,” says Svetlana. “Our children“ went ”to the museum throughout the conference, watched paintings there.”
Every Friday the group sums up and arranges karaoke - also online. Last week, Yulia sang the song “Forget-Me-Not” by Tima Belorussky, and then she talked with the teacher Sasha - she informed him that now there are quarantines in the country and all people are masked, and also said that she has a cat living at home, “he’s old, he’s 16 years".
According to Svetlana, with the beginning of self-isolation, she completely entrusted Julia with taking care of the pet: her daughter feeds him, combes him out, changes the water.
“From 12 to 14 hours they have a break in class. Usually they spend this time in the center, but now the parents themselves must occupy the children with something other than lunch, so at this time Julia is engaged in household chores. I am very grateful to her because I work from home myself, and there is not always time for housework, ”says Svetlana.
In the early days of isolation, Yulia found it difficult to get used to the fact that now she needs to do both leisure and work within the same apartment: “For example, she did not understand why her mother was at home, but could not take her time or have lunch together. I explained to her that I work. We ourselves do not know when this will end and we cannot explain to our children. Julia asks me when she will go to the center, whether we will go to have a rest in the summer. She began to watch TV news with us more often in order to understand what was happening. ”
According to her mother, on self-isolation, Julia misses her grandmother, who lives separately - now they call up and tell each other the latest news about the pandemic. And the girl wants to return to the library and to the post office, where she came after classes in the center to help.
“We have no lessons this weekend. We look at family photos from vacation spots, we can dream where we would like to go this summer, ”the girl’s mother says.
“Children are now waking up with us”
Muscovite Svetlana has twins, Vanya and Ilyusha, 3.5 years old, and both have ASD. Before self-isolation, the boys were engaged in the capital's rehabilitation center.
“The first thing I thought:“ This is a disaster! To be locked in four walls, without classes, without full physical activity, the ability to go out, ”Svetlana recalls.
In the center, the twins practiced four hours five days a week. Now the lessons are taught by Svetlana and her husband, and the employees of the video-communication center tell them what to look for. Despite the same diagnosis of ASD, the boys are very different.
“Outwardly, one of the sons is a copy of me, the second is a copy of her husband. With Vanya, we are now learning to express our desires calmly, without aggression. We use the PEX system - these are cards on which different objects are drawn. With their help, a child with ASD can explain to us what he wants, ”says the twin mother. - Ilyusha is very calm, closed, he has poor eye contact. It is necessary to develop communication with him. It happens that on the playground a normotypic child may come up to him and ask something, but Ilya will not react. A child with ASD may not understand that they are turning to him, and look at a person as if through a veil without noticing him. ”
Svetlana admits that she and her husband do not always manage to conduct classes for four hours a day: “This is the time when you and your children sit at the table and constantly communicate. You can’t just ask the child to draw a picture and do it for the next half hour, your task is to constantly encourage him to act and communicate: “Collect, show, do this and that.” All this requires a great emotional return. ”
Now Svetlana has less free time - consultations with the employees of the center and lessons with children have added to her work remotely. But in self-isolation, she found advantages for herself: “For me, for a working mom, this is a great opportunity to spend time with the kids. “Before, it seemed to me that I miss a lot of things in their upbringing, and now the children see us every day.”
“This is a new stage in the relationship”
Elena and her son moved to the city of Vidnoe near Moscow from the Altai Territory, because there was no rehabilitation necessary for the child. Now Vlad is 20 years old, he does not talk, but can communicate by typing on a computer. Elena herself not only deals with him, but also runs the 18+ club in Vidnoye, where adolescents and adults with ASD practice art therapy.
- © Photo from the personal archive
Prior to self-isolation, according to the woman, she went to Moscow three times a week to attend classes at the Our Sunny World, a rehabilitation center for disabled children. After quarantine was introduced, Elena using the PEX system cards had to explain to her son that because of the coronavirus, he would have to temporarily engage in online activities.
“At first I didn’t understand how the remote classes would take place. I am not “friends” with computers, I had to learn Zoom from scratch, but it turned out to be easier than I thought, ”Elena shares.
Every day she and her son walk in the forest near the house, because Vlad needs to walk several kilometers daily. According to Elena, although they managed to continue their studies, they look forward to the end of self-isolation.
“I would like to be in real isolation now - not to leave the house and lie on the sofa with a book, but this is impossible, because Vlad needs to walk in the forest. No one else can go with him. I got a voice because Vlad is non-verbal and in the class I speak instead of him. I also lead a church service for parents of special children, and we call and communicate with them. Personally, I would like to talk less and just relax, ”she said.
Vlad also really wants to soon return to the center. On Tuesdays, he was engaged in alternative communication with the teacher - typing with her on the computer. He developed friendly relations with the teacher, and this is very important for a person with ASD who is difficult to make contact with people. Now they can’t see and chat live. But now Vlad began to print with the help of his mother, although before he did not allow her to do this.
“For a son to be able to type, someone needs to support his hand and help her control. After we stopped going to the center, he had no other options but to let me help him - this is a new stage in our relationship. Now he can print every day and as much as he wants, he writes very interesting prose, ”says Elena.
Vlad himself wrote about his condition (punctuation preserved): “I also want to write about autism, we feel lonely, but when there are close people nearby, everything seems not so bad.”
According to the US Centers for Disease Control and Prevention, the number of people with ASD in the world is growing every year. According to the latest data, in 2016, every 54th child has autism, which is 9% more than in 2014, when each of the 59 children was diagnosed with the disease. In 2012, ASD was diagnosed in each of 68 children. Moreover, autism is four times more common in boys than in girls.
Clinical psychologist of the Naked Heart Foundation Tatyana Morozova explains that an increase in the number of children with ASD may be associated with an improvement in the quality of diagnosis, as well as with a real increase in the number of people with this diagnosis.
“In Russia, the situation with statistics remains difficult, including due to the fact that doctors do not have the necessary completeness of knowledge to make this behavioral diagnosis,” the specialist explains in an interview with RT. - In addition, the diagnosis of autism does not provide any additional opportunities for the family, except for the chance that the child will be deprived of the opportunity to socialize - he will be expelled from kindergarten or school. “There are few government free services for an adult with autism, so parents do not insist that this diagnosis be left to the child after the 18th birthday.”