International charitable public organization children autism parents. Minsk resident: “When I found out that my son had autism, I felt like the child was dying in my arms, and there was medicine, but nowhere to get it

Vanya comes up to me, hugs me and kisses my forehead. Vanya is 10 years old and has autism. I'm 25 and I feel like he knows a lot more about life than I do. Although this boy with big sad eyes does not speak, he has difficulty brushing his teeth on his own and cannot pack his briefcase without his mother’s help. “When Vanya was three years old, they put a cross on him. How many times were they told to send him to a boarding school! But I'm not mad at these people. I’m worried that time was lost, that I didn’t know how to help my son then, nine years ago... Although why say this? Regret is not constructive,”- Tatyana Golubovich interrupts herself. Read the story of a Minsk family who lives with autism and fights for their child every day in the material Onliner.by.

- Vanya was born an absolutely normal child. Wonderful, beautiful baby, he developed like in a book. But after a year we began to notice something was wrong. Vanya did not pay attention when his name was called. We sounded the alarm, took our son to the doctors, but the speech therapist said one thing, the speech pathologist - another, the pediatrician - a third... No one could make a diagnosis. As a result, the doctors decided that the child was deaf and therefore did not respond to calls. “God, what grief! I have a deaf child! What could be worse!" - that’s what I thought then. How wrong I was... By the age of two, Vanya simply stopped talking. I remember I was sitting at an appointment with a speech pathologist, sobbing, and she answered me: “Mommy, everything is fine with your son. Don't label me!" And it’s true, Vanya was such a sweetheart! He hugged everyone and smiled. It was impossible to imagine something terrible. Only after many months did we finally get to a specialist who said in plain text: “Your child has autism,”- Tatyana recalls.

We walk through the Staiki sports complex, and Vanya rides ahead on a scooter. The wind mercilessly lifts collars and ruffles hair, the gray sky prepares to lighten with rain, but none of this matters. Vania. On his way. Myself. On a scooter. You probably don't know, but it's almost incredible. Many people with autism don't ride scooters, write poetry, or go to school. Vanya’s mother did everything to change reality.

- Autism is a disability that in most cases is invisible to the eye. At the same time, it does not go anywhere, it remains forever. I remember how my husband and I looked at our beautiful, smiling child, read terrible things about autism and couldn’t believe it. The puzzle just didn't fit. To our Vanya - and all these horrors? Outbursts of aggression? Absolute helplessness? Inability to live independently? Can't be! I kept waiting for a miracle to happen. And my husband also hoped: a little more of our efforts, just a little - and Vanya will become an ordinary boy. That's it... Now we both understand that the most difficult thing was to accept autism, to come to terms with the fact that it is forever. Only when we were five years old did we decide to apply for disability. Then we finally realized that life will never be simple,- Tanya admits.

The problem for Belarusian parents is that it is not enough to accept their child’s characteristics. People with autism have to fight for happiness, every day. Starting from the very moment the first signs of this neurological disorder appeared. Alas, Belarusian medicine still does not know how to diagnose autism. Parents find themselves in a complete information vacuum. There are no kindergartens, no schools, no teachers for such children. With the exception of the only specialized preschool, where children with autism, cerebral palsy, Down syndrome study together, and a small number of integrated groups in kindergartens.

- Let’s say the diagnosis is finally made: it’s autism after all. So what should I do? The state only offers a few hours correctional work in Week. But this is a drop in the ocean! “Take care of your son, mom, and don’t whine.” How to do it? How to work with it? I myself turned over mountains of literature, searched on the Internet for everything I could, and realized that there are ways, methods. I read a lot of theory, but it just didn’t translate into practice... This is terrible despair! It's like I have a child dying in my arms, time is precious, and there is some medicine that can save him, but I don't know where to get this medicine!- Tanya manages to talk about this without tears.

Tanya and her son go to “Staiki” almost every day. A walk along the shore, a circle or two on a scooter around the stadium, a snack on a bench... The same routes every time. Rituality is very important for people with autism. All life consists of a huge number of rules. Vanya always brushes his teeth with his white brush, takes out T-shirts from the shelf with the inscription “T-shirts”, and after getting out of the car, he checks whether his mother has closed the door.

-You are never free of autism. Never. Your child always needs you,- Tanya reveals the truth of her life.

Vanya grew up, but speech did not come to him... Tanya had a dream - for her son to study in a regular school. Sounds a bit strange for a dream. Just think, school. A stern math teacher, a backpack, table porridge... But for children with autism this is practically impossible. Their behavior is often seriously different from the behavior of their peers, because they have a different sensory perception of the world. They may, for example, suddenly get up and start running around in the middle of class. It seems like they are officially accepted into school, but they do everything possible to get rid of the “inconvenient” child. So that the parents themselves take him home, away from stress. In the West, this issue is solved with the help of tutors - personal assistants who are constantly close to special children during lessons. But where do tutors come from in post-Soviet Minsk?.. Stubborn parents solved this problem on their own by sending a request to officials. The Minsk City Executive Committee did not immediately give the go-ahead. But in the end he still agreed. This unique case. Thanks to the efforts of Tanya Golubovich and other proactive parents, the first integrated class appeared in Belarus, in which 17 ordinary students and three boys with autism study.

- We simply asked the parents of our classmates to give us a chance to study with their children. After all, this is vitally important for Vanya and other such boys - to be among their ordinary peers, to hear their laughter, to play, to adopt behavior... At the last teachers' meeting we watched a video. There is a piece where my Vanya dances with a classmate, a wonderful girl Anya. My child, who two years ago couldn’t even fold a briefcase by himself, is dancing with an ordinary girl! Let it be awkward, clumsy. But he dances! I cried when I saw this- Tanya admits. - The most amazing thing is that Vanya and the other boys with autism were accepted at school. Classmates take care of them and take care of them. Even the high school students are friendly. For this I have a lot of gratitude to the 5th school!

Each of the three boys with autism who study in 2 “A” has their own tutor - a personal accompanying person who spends the entire school day with the child. Most of the time, the trio study separately in the so-called resource room, which the parents equipped at their own expense together with the school. But now the boys go to drawing and singing with the rest of the class. If possible, they sometimes come to math or reading classes. But during breaks they always spend time with their classmates. This is all called inclusion. Behind the beautiful foreign term is the opportunity to be together with your peers, to see and accept the otherness of other children.

- The school year will end soon, and we are thinking about how to organize summer camp for our sons. Another problem is keeping the first shift in next year. School 5 does not have enough premises, and our tutors will not be able to work the second shift. But these are all local difficulties. The most important thing for me is to have time to create a whole system of help that would accompany Ivan until his death. So that I can grow old and not think about Vanya dying in a boarding school! This is my biggest pain... That is why my parents and I created the initiative “Good Jam for good people" We are about to be officially registered as a public association that helps children with autism and their families,- Tanya says proudly.

Dear friends!

We invite you to the presentation of the project “Autism: Easy to Understand”, which will begin on June 4 at 16:00 in the Gallery of Contemporary Art Ў (Minsk, Nezavisimosti Ave., 37a)

The “Autism: Easy to Understand” project is information resource autismschool.by and a children's computer game “My Friend Has Autism.”

All this is created by the efforts of the participants of the MBOO "Children. Autism. Parents" to help their children and their "ordinary" peers, teachers, parents who want to communicate and interact with children with autism.

Over the past year, a lot has been done in Minsk to integrate children with autistic disorders into mainstream schools. We have already talked about some positive changes that have occurred on parental initiative: an interdepartmental working group on autism issues; a city resource center began operating on the basis of the Minsk City CCROiR; V high school No. 5 has been operating the country's first integrated class for children with autism since September. In the next academic year the number of integrated classes for our first-graders in Minsk will increase.

Unfortunately, we, parents of children with autism, see not only positive changes, but also a huge number of obstacles that our children have to overcome. Moreover, most barriers exist only because neither teachers nor peers understand their features.

WHY WAS THE PROJECT “AUTISM: SIMPLY UNDERSTANDING” APPEARED?

“From one publication to another, fictions about children with autism wander: supposedly they do not need friends and new experiences, they have attacks of causeless emotions, including anger,” says Irina Dergach, coordinator of the “Autism: Easy to Understand” project. – I tried to find the origins of these misconceptions. As a result of my searches, I found several published in the public domain. different years, but duplicating orders of the Belarusian Ministry of Health, clearly copied from the orders of the USSR Ministry of Health and having nothing in common with modern knowledge.

In the world, the causes of “groundless emotions” have long been studied. The experience of countries that realized the problem of autism much earlier than us shows that with proper pedagogical attention and respect for their characteristics, children with autism grow up to be full participants in society. They can be responsible employees, have talents and abilities. And no less than other people, they need friends, love, and acceptance. Moreover, it is not at all difficult to understand and accept their features. Our experience says that even a child can cope with this “science”.

The creative team of the project consists only of parents of special children:

photographers Dmitry Kovalenko and Tatyana Terekhina

designers, website and game creators – Dmitry Voloshko and Elena Kovaleva

We combined our abilities to help our children find their place in society. And to say out loud once again: it is not autism that makes a person disabled, but the inadequate attitude of society towards this diagnosis.

FOR WHOM IS THE COMPUTER GAME “MY FRIEND HAS AUTISM?”

The main character of the quest “My Friend Has Autism,” the boy Sasha, has autism. He sees and hears the world around him differently than everyone else. To successfully complete the game, you need to adapt to Sasha’s sensory characteristics and establish communication with him.

It’s the same in life: a society that finds mutual language with “not like that” people, he wins.

The game is intended for children and adults who want to gain basic knowledge in the field of interaction with children with autism. The game is still in development, only individual episodes are ready.

Along with the instructions, two dozen will be included with the game real stories children with autistic disorders who find themselves in the education system.

IN this moment Stories are being posted on the resource https://autismschool.by/

ABOUT THE CHILDREN PARTICIPATING THE PROJECT “AUTISM: SIMPLY TO UNDERSTAND”

“The project “Autism: Easy to Understand” has 20 real participants,” continues Irina Dergach. – These are children with autism who are already in the Belarusian education system. Their mothers tell their children's stories, their hopes and worries.

I consider these short interviews to be unique material, including for making management decisions. After all, never before has anyone interviewed so many families raising children with autistic disorders.

I would like to introduce some of the participants in this press release.

Nikita- our eldest. He is 19 years old. He studies at night school and works as a courier; after school he wants to continue his education. He plays the saxophone, draws beautifully, is interested in geography and history, and loves to travel. Before going with his mother to Kyiv or Moscow, he studies a map of the city on the Internet, and then navigates it no worse than a native resident. He has an amazing memory.

When his mother was choosing a school for her son, Nikita hardly spoke; his card included not only EDA (early childhood autism), but also a delay speech development, disturbances of attention and intelligence, hyperactivity. Nikita finished his first grade at home, then his mother found him a small school with integrated classes.

Paul, 13 years old. He graduated from the seventh grade of a school for children with severe speech impairments; the school follows a general education program. He is interested in construction and music: he plays the piano from sheet music for the second or third grade of a music school.

At one time, Pavel graduated from kindergarten with such recommendations that he might not have gotten into the school, even the auxiliary one. Non-speaking children with such intellectual and behavioral problems usually study on the basis of the CCROiR. The latest tests show Pavel's high intelligence.

These two stories are about the enormous potential of our children, which cannot be “seen” using traditional diagnostic methods.

Kostya, 8 years. A boy with Asperger's syndrome graduated from the second grade of secondary school. Kostya's developed speech, high intelligence. He has already become the winner of a class Olympiad in mathematics, and his first literary works have been published in a magazine.

Since, despite all of Kostya’s abilities, he remains a child with autistic disorder, Kostya’s mother accompanies him at school. The only alternative is home-based education, because the profession “tutor” (or “accompanying a child with autism”) is still not in the qualification directory. But sentencing a child with autism to home schooling means depriving him of the chance for socialization.

We really want Kostina’s successes to accelerate the introduction of the institution of tutoring in Belarus. Children with Asperger's syndrome tend to have extraordinary abilities. But if the school rejects them, they will not find a worthy use for these abilities.

Artem, 8 years. He graduated from the first grade at a auxiliary school, second department.

“At school we faced many problems: rejection and misunderstanding of the child by the teacher, indifference of the staff,” says his mother. – There are no correctional classes with a speech therapist and a psychologist, the school curriculum is very weak. We were not ready to face this in an institution that is intended for special children, including severe children.”

Artem will go to first grade for the second time in the fall, already at a comprehensive school. We are very happy for him.

While working on the project, I did not meet a single family who was satisfied with the auxiliary school. First of all, because most children with autism have “islands of success” - types of activities or areas of knowledge that are easy for them. The program designed for children with mental retardation neutralizes this success.

Sofia, 4.5 years. Our smart and beautiful girl with Asperger's syndrome. The daughter of a young, educated woman with Asperger's syndrome, who successfully works in the IT field.

“For as long as I can remember, I have not left the depressing feeling that I cannot, like everyone else, communicate, be happy, sad, or have fun,” she writes. “I was strange, that’s all.” And how many times have I been asked to become normal!

“Stand up and look me in the eyes,” my first teacher demanded, “you can’t even look me in the eyes!” Tell me, tell all the children: when will you finally become normal? Do you even hear what I'm telling you?..

I’ve always wanted to get closer to this mysterious “normality”!”

Anyone who reads the story of the girl Sonya and her mother will not be surprised to learn that autism in Belarus is still latent.

For reference. According to the Chief Freelance Child Psychiatrist of the Ministry of Health of the Republic of Belarus, Associate Professor of the Department of Psychiatry and Medical Psychology of the Belarusian State Medical University Inna Pyatnitskaya, in Belarus from 2005 to 2012 the number of children with autism spectrum disorders (ASD) increased 2.8 times - from 251 to 699 cases.

As of October 1, 2013, there were even more children with an officially established diagnosis of ASD – 786 people. Growth is observed in all regions of the republic, especially in the city of Minsk.

According to statistics from the international organization AutismSpeaks, approximately every hundredth child on the planet has an autism spectrum disorder.

If autistic children are supported in time, many of them will be able to avoid disability.

Symptoms of this disease can be seen in many famous people: Steven Spielberg, Woody Allen, Albert Einstein... The list of people with signs of autism can be continued endlessly! It is lists like these that help parents of autistic people not lose hope that their children will be able to live in society. The concept " autism"(from Greek auto- sam) means deepening, withdrawal into oneself. For example, a child with autism may not react to a bee sting, but will scream in fear when it rains. He may become attached to some thing, but he will hardly react to his own mother. Many children with this disorder do not want to leave the house, and some never begin to talk...

The heroine of the article admitted that she does not like a film about a man with autistic disabilities “ Rain Man" In the film, an autistic father bequeaths all his property to the psychiatric clinic where his son lives... " I don’t have money that I could leave to the clinic, and besides, I’m not happy with the thought that my son might end up in such an institution!- she says. And she hopes that her story will help parents of such children fight for the right of autistic people to live in society, and not in a home for the disabled.

« Timur- a long-awaited child, we were preparing for his birth. But I soon realized that he was different from my eldest son. Of course, the eldest was also “not a gift,” but so scream, no matter whether he is full or hungry, dry or wet... The baby grew, and I began to notice other features: he avoids eye contact, is not interested in other children, and generally cannot do anything for a long time... But he has the energy for three: even when he ate, he could not sit. He chews a pie and runs circles around our seven-meter kitchen. It was impossible to stop him...

When it's time to go to kindergarten, we went to speech therapist. There, in the specialist’s office, Timur saw a toy airplane and began to play with it. The speech therapist tried to establish contact with my son, to somehow attract his attention. Where there! Timur was silent! The speech therapist gave us “ early childhood autism (ECA)" in question and sent to psychoneurologist.

Problems also began in the garden: Timka cried every morning, and the teachers complained that Timur does not listen, does not eat, does not know how to dress independently... In the group he played only with himself, almost didn’t talk to anyone. They reassured me: they say that the boy is not “kindergarten”, he will get used to it over time. Then everyone agreed that my special child cannot go in the general flow. But there are no child care facilities or groups for autism. There are correctional groups for children with mental retardation, speech therapy for children with speech problems, special kindergartens that children with cerebral palsy can attend... but nothing for us.

Finally we got to speech therapy group. One might say that an exception was made for Timka. But the program speech therapy group- systematic classes with a defectologist are not very suitable for those children who have difficulties in communication.

During my next visit to a neuropsychiatrist, I heard something terrible: “ Let's apply for disability" Probably every mother unusual child These words are shocking: it’s one thing to raise a “special” child, and quite another when they give you a disability pension, free medications and make it clear that medicine is powerless here...

I still feel like something is wrong here. Well, what kind of disabled Timur is when he and I have been swimming in a large pool for three years, and in the evenings we douse ourselves with ice water according to the Ivanov system? Behind last year my boy was sick only once, the temperature lasted for a day. Maybe this is too much luxury - to erase healthy, intelligent, albeit disharmonious, autistic people from society? And at the same time, their young and able-bodied mothers who are forced to care for a disabled person.

Home schooling was recommended for us, but I decided to send my child to school. Precisely general education, so that from childhood he communicates with ordinary children. I went to the district education department and asked to find a friend like him so that we would have someone to go to the integrated class with. But it turned out that my son is the only one like that in the entire Pervomaisky district.

Now that it has appeared in Minsk public association of parents of autistic people, I know that There are about 200 families with such children in the capital. This is the official figure. There is another one, ten times more. Not every mother will find the strength to recognize a psychiatric diagnosis in her child. But to combat a problem, you first need to recognize it. We did it, and since then we have made no secret of our diagnosis. And I tell Timka the truth: “ You are different from other people, but I know that you will find the strength to live in our society».

There were other reasons not to stay at home with Timur. I love my job and would not like to quit. And I have two children. I am raising them alone and cannot allow my family to live only on pensions and state benefits.

The district education department offered me place in an integrated class(in such classes both healthy and special children study). At first there were only two special ones - my Timur and a girl with poor hearing. A special education teacher works in parallel with the teacher in the classroom. The defectologist takes the “integrated children” to his office for lessons that require more attention. And during breaks and other lessons “special” - together with other children. The girl, by the way, has improved her hearing and is studying with the class, but Timur was added two boys. The three of them go according to the program "with learning difficulties". Again, a good program, but not for autists. We have other difficulties...

The first two years were very difficult for Timur, despite the fact that we were lucky with the teacher. Already on the first of September, surprises began: after the lesson, Timur ran away. He was able to leave the school unnoticed, although I was waiting at the entrance. We found Timur on the playground in the kindergarten. The teacher then told him, so calmly and confidently: “ Timur, have you decided to visit kindergarten? Well done. Only in next time, when you want something again, you tell me, and I will help you».

Timur is still hyperactive, I used to be able to get up in the middle of class without permission and go do something. The teacher understands this too: when she saw that Timur was starting to fidget, she gave him instructions: open the curtain, wet the cloth. She let him sit wherever he wanted. In first grade, he chose the last desk and sat alone, but today he loves to study with his neighbors. The teacher was able to explain its features to the children- silence and ridiculous statements in class, absent-mindedness, “terrible” behavior. Our kids really behave sometimes like aliens who just descended to Earth from a spaceship. Timka could collect earthworms on the way to school and put this “gift” into the teacher’s hand in a dark corridor, or scatter food in the cafeteria and say: “ Better to die than eat cakes" You need to be a real teacher to understand the reason for this behavior: in reality, my “alien” just read a fairy tale about the Kid and Carlson. And he quoted the words of the main character, who also thinks that “ It's better to die than eat cauliflower».

Of course, there were also very difficult periods. For example, Timur was never able to get used to the after-school group. Broken glasses, flowerpots, torn wallpaper, broken toilet - this is all my Timur. Moreover, I learned about all the troubles from the lips of the teacher or children. Autistic people don’t know how to tell stories, I could only guess from the look of “nowhere” and sudden tears at night that something was wrong with Timka. Sometimes my head was spinning, I thought: I’ll finish my work for a week and that’s it, I’ll take it to home schooling. At such moments, a psychoneurologist supported us: “ Wait a couple more weeks and maybe things will get better" We waited like this for almost two years. I had to switch to shortened working hours and find a nanny who picks Timur up right after school. And then... it happened small miracle.

I remember this day well - May 31st. Timur had just finished second grade, and in the evening he told me: “ Mom, I’m already an adult, I’ll go to third grade, so I won’t be mischievous anymore." And he still keeps his promise. Today he behaves like ordinary boy- sincere, curious, a little naive. I think a lot of people at school loved him. And our school No. 203 can really be proud that it was able to integrate such a difficult child.

Autistic people usually have preserved intelligence, they just need help adapting to our world. And my experience has shown that such children the need for communication can be developed. Timur has already seen other children around him, he can run with them, ride down the slide... We have a friend - however, much younger than my son. It’s easier for Timka, since it’s difficult for him to negotiate. He wants to be friends with his peers, but he doesn’t yet know how to do this. I hope to teach him.

I sometimes think that if I had not taken Timka to kindergarten and school, my son would now be sitting alone. Yes, we have a disability now, but the diagnosis will be reviewed every two years. We hope to say goodbye to him forever someday.

I talk about my experiences on forums on the Internet. Many parents have lost hope that their child, with the same diagnosis, will be able to socialize. But I see my son, who has changed a lot. Yes, it is still easy to offend and deceive him: social intelligence develops slowly. If a stranger takes him by the hand, he will go with him. But just because of this, considering a child to be hopelessly disabled is wrong.

I'm sure we need to create more integrated classes. They are needed not only for children with diagnoses, but also for healthy ones. Why? I will explain. My Timur is very absent-minded, he can forget his briefcase in the corridor or in the dining room he can forget why he came there. Classmates take care of Timur without humiliating his dignity. They will simply bring that briefcase or place a plate in front of him. And one very correct seven-year-old boy, when he saw that I was angry with Timur for something, even reproached: “ How can you swear at him? Timur is simply an extraordinary person!»

Agree, these words are worth hundreds of broken glasses!

April 2 is Autism Awareness Day, a disorder that has many faces and is still poorly understood. We make our informational contribution - we present the book “The Adventures of Another Boy. Autism and more." Its author is Elizaveta Zavarzina-Mammy, the child’s mother (and today young man) with autism. As a child, Petya did not know how to do simple things - run, point, speak; afraid of strangers and loud noises. Today he reads several languages, loves music, swims, bikes and rides horses. We publish the preface to the book.

IN last years You constantly hear about children who have “something wrong”: one won’t start talking, another doesn’t want to play and avoids his peers, the third constantly screams or cries. Sometimes these problems are much more serious, and there are many of them. In this regard, the word “autism” is increasingly heard.

What is the reason for the widespread spread of a diagnosis that was little known until relatively recently, but today is talked about in the media, and a rare person has not heard of it? Opinions vary. Some argue that the number of people with autism around the world is rapidly increasing. Others believe that there have always been many such children, it’s just that diagnostics have improved these days, and the term “autism” has begun to be used to designate a variety of developmental disorders.

Be that as it may, we have to admit that children in need of special education and treatment are increasingly facing the need for society to solve their problems. Meanwhile, as noted at the 1st Moscow International Conference on Autism (2013), “due to the lack of understanding of the mechanisms of development of diseases of this group, objective diagnostic criteria, as well as laboratory diagnostic methods, currently do not exist.”

Not a single mother, not a single family, no matter what country she lives in, is prepared for the birth of a sick child and the many problems that arise as a result. You shouldn’t assume that “here,” in the West, the state does everything for the parents—that’s not the case. Our family has been living in France for more than ten years, and we know this firsthand. In some countries, rehabilitation issues have been resolved better, in others - worse, in others they have not been resolved at all, but parents of autistic children think with fear about their future, regardless of where they live.

The main problem of autism throughout the world is that not every specialist can help: one uses outdated knowledge, another, conducting standard tests, does not find deviations. There are knowledgeable specialists, but they are sorely lacking, and parents often have to look for solutions on their own.

The worst advice you can hear is to wait. As a result, the child does not receive necessary assistance promptly, and his condition becomes more and more serious. The earlier you start classes with your child, the greater your chances of achieving success.

Dr Jonathan Tommy, director of an autism clinic, co-founder of Autismfile magazine and father of a child with autism, writes:

“It is unfortunate that many doctors and other specialists called upon to treat and care for our children know too little about the problem, as a result of which parents are left without the help you need and are forced to fight difficulties on their own, without direction and support. This is a very real, very common and very tragic situation. Our children are entangled in illnesses and problems, and we must get to their roots. It is necessary to find and treat the cause of the disorder, and not to remove its symptoms with medications.” Unfortunately, strong medications are too often used for autism.

When many years ago a “not like that” boy Petya appeared in our family, no one could explain the cause of his problems and how he could be helped.

In 2014, Petya turned 25, and until now not a single specialist has given him a more accurate diagnosis than “organic damage to the central nervous system" The most detailed analyzes existing in the world today, including genetic ones, do not reveal any deviations from the norm.

Twenty years ago, too little was known about autism and related sensory issues. Today, fortunately, parents are in an incomparably better position. Over the past years, much has been understood thanks to the joint efforts of specialists, people with such disorders themselves, and their parents. These invaluable testimonies provide first-hand insight into useful tips and better understand the essence of the phenomenon, and thanks to the Internet, it became possible to quickly find the necessary information.

I have thought more than once how much easier life would have been for Petya and I if we had known then what we know now. “We can write a book about how we did things to live so interestingly. This will help others,” he once wrote. I’ll add: “And to stop feeling unhappy and helpless.”

I had the opportunity not to work and take care of the child; we could travel abroad and, thanks to our knowledge of languages, get acquainted with existing methods. Some of them require significant funds, others - little, and others - none.

I tried to present the most important things that we have learned over the years. The title of the book, “The Adventures of Another Boy,” was suggested by Petya himself. The book is addressed primarily to parents, who do not always have the necessary knowledge in the field of physiology or neurology, because even for us, biologists with an academic degree, many things turned out to be unexpected or for a long time didn't occur to me.

The first part of the notes is about our life, classes with Petya and how we gradually turned from confused parents into experienced specialists. When Petya was very little, we were told that everything was fine with him, and that my worries were unfounded. Then the problems became obvious and we began to hear: “You must learn to love and accept him for who he is.” Useful advice, but doesn’t loving mean treating, teaching, helping?

Endless consultations and classes with speech therapists, psychologists, defectologists, art therapy, music therapy, hippotherapy, massages - you can’t remember everything - brought very little results; we lived constantly experiencing humiliation and feeling our own powerlessness. The further we went, the more we became convinced that the experts didn’t understand, didn’t know, or weren’t saying something.

At the age of six, Petya often had to be picked up - he was so tired of moving his legs.

We began to look for a way out ourselves and learned about the work of Glenn, director of the Institutes for Achieving Human Potential in Philadelphia (The Institutes for the Achievement of Human Potential; IAHP), which have been developing rehabilitation methods for children with brain damage for more than half a century. (Perhaps the name should be translated, for example, as Institutes for Unlocking Human Potential, but tracing paper has already come into use.)

We were the first family to come to IAHP from Russia, where almost no one knew about these techniques in the late 1990s. For more than six years we have been engaged in individual programs. We are eternally grateful to Glenn Doman and the staff of the Institutes for the newfound hope, thanks to which we felt the ground under our feet, for Petya’s achievements that we did not even dare to dream of, as well as for the knowledge gained that completely changed our understanding of children with problems and allowed us to move on independently.

Today, many Russian-speaking families are already enrolled in IAHP programs, and in 2012, the course “What to do if your child has brain damage” was held for the first time in Moscow. Thanks to the enthusiasm of Sergei Kalinin, the father of a “special child,” Doman’s book of the same name, as well as his other works, was officially translated and published. In 2013, the first “parental” book was published in Russian about classes according to the Institute’s programs, written by Andrei Trunov.

The second part is about what we have learned about autism and sensory processing disorder, SPD (Sensory Processing Disorder, also known as SID, Sensory Integration Disorder; sensory integration disorder).

Nowadays, it is difficult to find a person who has not heard of autism, but not only parents, but also specialists are often unaware of sensory processing disorder. However, it is widespread and closely associated with autism.

However, in Lately SPD is receiving increasing attention. Publications on this topic have appeared in Russia, in particular, books by Jean Ayres (2013) and Carol Kranovitz (2012) have been translated and published. Many authors consider SPD to be the cause of various manifestations of autism. There are those who believe that most cases described as autism are actually severe cases of SPD.

In the second part, I also talk about one of the methods of alternative communication - Facilitated Communication, FC (facilitated communication). It makes it possible for non-speaking people to express thoughts, to participate in the life of family and society, and for others to understand and appreciate the true level of intelligence of such a person. FC is an alternative method of communication, the same as sign language of the deaf, which everyone knows about and therefore does not question its effectiveness. In Russia, unfortunately, the FC method is still little known, although there are people who have been using it for quite a long time.

When we were just starting to learn FC, its author, Rosemary Crossley, helped us a lot with advice, then I took several thematic courses in France. FC completely changed Petya’s and my life, and it seems important to me that as much as possible more parents and specialists gained an understanding of this method.

Autism is a mental disorder that occurs as a result of disorders of brain development, characterized by a deficit of social contact and communication, limited interests and the same type of repetitive actions. This disease manifests itself at the age of three.

In the Republic of Belarus from 2005 to 2012 total number children under the supervision of psychiatrists due to general developmental disorders, including autism, increased 2.8 times (from 251 to 699 cases). As of October 1, 2013, there were even more children with an officially established diagnosis of ASD (autism spectrum disorder) - 786 people. An increase in the incidence of autism spectrum disorders is observed in all regions of the republic, without exception, and in the city of Minsk.

Childhood autism is a special type of disability mental development. Due to the clinical diversity of manifestations of this distortion, the term “autism spectrum disorder” (ASD) arose, uniting all variants of autistic disorders and denoting a group of children in need of specialized help.

Today, autism can probably be safely called one of the most “strange” mental disorders in the world. childhood. And not only because such children are often called “strange”, but also because it is still unknown what causes it and what exactly is disrupted in such a child. There are different theories, but none of them can fully and completely explain the nature of this disorder. There is currently no cure for autism.

Portrait of a child with autism.

In order to understand what is happening to such a child, imagine that everything you feel has increased or decreased a hundredfold. Light touches can cause you pain or, conversely, a strong blow can go unnoticed. A bright thing, previously familiar sounds will become frightening, and the interlocutor’s speech will simply turn into a melody. It is difficult to imagine this, but one can understand that in such cases the world of people and the world of things are perceived differently by him. But how this is “otherwise” we can only guess, assume... Such children have many different characteristics, but what really distinguishes them from other, even sick children, are pronounced difficulties in interacting with other people and with the world around them in general.

In a child with autism, as a rule, the process of personality formation is greatly distorted. He has difficulty independently identifying himself with his body and with even greater difficulty distinguishing himself from the world around him, which significantly distorts his interaction with others, and sometimes makes it completely impossible, because when there is no “I” it is not clear who should interact with whom , and most importantly “why?” Such children may have disrupted emotional connections even with the closest people.

He can be alone for a long time, does not know how to express his desires, ask for help, even with his gaze, and he can use an adult as an inanimate object: climb on him to reach a shelf, use his hands.

Some children with autism may not use speech at all, while others produce detailed adult monologues and quote phrases from books and cartoons. In both cases, their speech practically does not act as a means of communication. As for their intellectual abilities, the picture here is the same as with speech - from partial giftedness to mental retardation, which is caused by deep immersion in oneself, pronounced withdrawal from any contacts and complete limitation of oneself from natural learning experience. An autistic child may solve complex math problems and be unable to go to the store or tie his shoelaces.

If such a child was able to somehow integrate into this world, then he will protect his usual way of life. Not because he is stubborn, but because any changes, even minor ones, are like a nightmare. We went for a walk along a different route - hysterical. Mom changed things - a scandal, and moving to another place of residence can turn into a real disaster. At the same time, not every autistic child will express his emotions vividly and violently; the reaction may be imperceptible and delayed in time - he stopped eating, speaking, or the temperature rose. Such a child is distinguished by extreme unusualness, often pretentiousness in behavior and habits, which is in no way associated with poor upbringing or bad character, which others often attribute to them.

Symptoms of Autism

Contact your doctor if you notice the following in your child:

The child does not respond when his name is called;

Can't explain what he wants;

Experiences a delay in the rate of speech development;

Does not follow any instructions from adults;

Hearing disturbances appear periodically;

Does not understand how to play with this or that toy;

Poor eye contact;

Doesn't smile at others;

Does not babble or coo at 12 months of age;

Does not make pointing, waving, grasping or other movements by 12 months of age;

Does not speak single words at 16 months;

Does not say two-word phrases at 24 months;

Loss of speech or social skills occurs at any age.

Often the parents of such children have the feeling that the child lives in his own separate world.

Treatment of autism

People often misinterpret autism. Claims that autism can be completely cured can be heard in many families. Exist different models treatments for autism, regarding education in this area (educating people) and the treatment itself. However, the most effective direction in treating this disorder is to educate or inform the person about the disease.

There is a tendency to place children with autism in small classes so that they are free from auditory and visual stimulation. Educational information is given to the child in small parts. Since September 2013, the first integrated class for children with autism has been operating in the capital’s school No. 5. main task which is the creation and further dissemination of an effective model of teaching children with autism within the framework of a comprehensive school. The work of this model is based on world-recognized methods of teaching children with autism with scientifically proven effectiveness (ABA - Applied Behavioral Analysis and TEACCH: the basics of structured training for children with autism). In the next academic year, the number of integrated classes for children with autism in Belarus is planned to increase. Minsk schools No. 5, No. 76, No. 108, No. 81, No. 104 are preparing to accept children with autism.

People with autism need to be taught how to communicate and interact with others. This is not an easy task and it involves the whole family as well as professionals. Parents of a child with autism should stay informed about new treatments and remain open-minded. Some treatments are suitable for some patients but not for others. The effectiveness of many treatments has yet to be scientifically proven. Treatment decisions are always made on an individual basis after careful assessment, and are based on what is the appropriate treatment for both the child and the family.

It is important to remember that autism is a condition that requires ongoing treatment. The treatment program may change as the individual develops. Families should beware of treatment programs that offer false hope of healing. There are no medications yet that have been fully proven to be effective in treating autism. There are no cures for autism, and there is no sufficient level of willingness of society to accept children with special needs into its ranks, and this is much more important for children and their parents than searching for a magic pill.

Under the organization of provision medical care Children with this diagnosis primarily require early diagnosis and treatment of those mental disorders that accompany or complicate the course of autism. The emphasis is on psychocorrectional assistance and rehabilitation, which can change the quality of life of children with autism, their social adaptation and integration into peer society. If you use conditions, forms and methods of teaching that are adequate to the problems of autistic children, you can significantly reduce the impact of autism on the course of the child’s further development, thereby changing a person’s life towards the most complete, included in society, independent and independent.

In Belarus, the most active part of parents of children with autism is united by the International charitable public organization “Children. Autism. Parents". Members of the organization touched upon a wide range of problems related to providing assistance to children with ASD, which entailed making adjustments to the provision of psychological, pedagogical, medical, and social assistance at the interdepartmental level.

In May 2013, a coordination council was created in Minsk, which included: representatives of the committee on education, health, labor, employment and social protection Minsk City Executive Committee, representatives of public organizations.

World Autism Awareness Day allows us to dispel myths and prejudices about such children, provide more objective information, and unite the efforts of parents, specialists from various ministries and departments, and people who are not indifferent to other people’s problems.

Modern approaches to the diagnosis and rehabilitation of children with autism and other disintegrative disorders require close interaction between the educational, social and medical systems, public organizations, continuity in the interaction of rehabilitation structures and departments of the Ministry of Health that provide psychiatric care to children. The need to develop such a system of assistance to children with RDA, where specialists from various Ministries and Departments would be involved, is beyond doubt.