“I have the courage to speak publicly about my diagnosis”: Maria Parfyonova on dyslexia

- It is known that dyslexia is an official diagnosis abroad , it is also called the “genius disease” in the media, because it suffers from a number of popular personalities, for example, Tom Cruise or Quentin Tarantino. In our country, on the contrary, people hide and are embarrassed by this, since there is an opinion in society that these are children with developmental delays, from dysfunctional families, with a lack of attention of parents. But your example completely refutes this.

- It is very important to understand the terminology. For a long time no one has called dyslexia in the West a "disease of geniuses." To begin with, this is not a disease at all. A disease is something that can lead to death or worsen your general medical condition. And what can be cured.

Dyslexia does not kill and cannot be cured, but with it you can learn to live and be successful. This is a genetic neuropsychological feature that causes various congenital and acquired benefits as well as serious learning costs. Costs are associated with the acquisition of individual skills such as reading and writing. And the benefits will be associated with a variety of "right-brain" abilities of the brain: emotional intelligence, imaginative and abstract thinking, musical data and others - all individually, like fingerprints.

In the West, dyslexia is defined as "special educational needs." Actually, this terminology is now relevant for our Ministry of Education.

- So in Russia, dyslexia is an official diagnosis?

- Dyslexia in our country is not prescribed in medical forms. It is almost impossible to obtain an official opinion on the diagnosis of that name. Specialists who are supposed to be doing it massively in Russia are speech therapists. Speech therapist is not a medical specialist, this is a teacher.

If we are talking about a medical classification, which will include all psychological disorders, including learning difficulties of all kinds, then such a conclusion will provide a person with the right to special conditions of support for receiving an education and even at work. In Russia, dyslexia is considered only a speech disorder. So far, no rights and privileges have been formally provided for the education of such children, but the Association of Parents and Children with Dyslexia is actively working on this problem. At the same time, it is still believed in Russian society that such difficulties with learning are the lot of disadvantaged groups. This stereotype is strong because we have more than 80% of people who do not know anything about dyslexia.

- These are statistics of parental ignorance, but not of teachers?

- Unfortunately not. The horror is that both teachers and parents, and a huge number of specialized specialists simply do not know what dyslexia and dysgraphia are. Such ignorance is very expensive for children with special educational needs. They themselves do not understand why they are, living under the yoke of reproaches, with a sense of inferiority and constant guilt that upset adults and grow up with complex psychological injuries. When it is found out in the elementary grades that the child does not read well, writes and cannot concentrate, then the teachers resolve the student’s problems and make complaints to the parents or the student himself, they say that they are poorly engaged, read little or have limited abilities. Often, everything ends with a recommendation to transfer to a correctional school, that is, for children with developmental delays, they also advised my parents, but fortunately they did not heed these tips.

- What made you publicly declare your diagnosis after returning to Russia?

- It is important for me to help children with dyslexia and other special educational needs so that they do not feel like outcasts due to the lack of awareness of adults. I do not scold society and teachers. Illiteracy in the issue of dyslexia is our mutual problem, and I have long dreamed of helping to solve it. That is why in 2016 I joined the first initiative dealing with this problem in Russia, the “Association of Parents and Children with Dyslexia”, founded by Maria Piotrovskaya, daughter of Mikhail Borisovich Piotrovsky (oriental historian, academician of the Russian Academy of Sciences, director of the State Hermitage Museum. - RT ) . That is why I have the courage to regularly speak publicly about my diagnosis.

- How did you find out about your feature?

- It happened in the first grade. I did everything worse than everyone: I could neither write in the recipe nor read. Confused letters, numbers, wrote them in a mirror. I couldn’t even write off the answer from my neighbor; I still made mistakes. At the same time, I fluently spoke English, or rather, was the only one who really spoke it - until the third grade for sure. Easily performed tasks on logic, on memory, played in theatrical circles.

“ Didn't parents notice this before?”

- Of course, they noticed, even from kindergarten. I myself somehow did not notice it. They saw everything, worried, but did not know what to do. Well, here the child is so deviant, hyperactive, restless, does not want to study and reads very poorly. But, of course, the parents also believed that their daughter was just so active, restless, maybe partly incapable of something, and therefore there are some lags. Nobody knew about dyslexia then, mom and dad just considered all deviations from the norm a feature of my character, tried to influence me, but, alas, this is an inborn neuro-feature and you can’t remove it by raising it.

“ What did you feel?”

- When you are little, you still do not understand that something is wrong when you do everything worse than everyone. I was well developed - both speech and memory, but all my perception was only by ear. And at school it began: the farther - the worse, because reading became more important every year for mastering the subject and attestation.

A separate horror came when dictations appeared. Then I realized that I didn’t even manage to write down, not to mention writing correctly. I just could not keep more than three words in my head, then the words got confused, forgotten and panic started. And the fact that I dictated to myself all the time aloud did not suit anyone. And, of course, when you understand: not only do you have a handwriting - it’s horrible, and for every four lines - 10-15 errors, and for others - two or three - then you start to wonder what is wrong with you. I did not understand why I can fluently speak English, I easily grasp information with visual accompaniment, and at the same time I am not able to read or write the assignment correctly in my native language. And no one understood this and could not explain. This is such a vicious circle from which it was impossible to escape.

- How did the teachers react? Have you tried to help?

- They reacted very badly. The most terrible phrases, up to: "You are not the daughter of your parents, such an incapable girl could not be born to such parents."

- How did you manage to finish school?

- Immediately after three classes, my parents were called and announced that I had no place in a regular school. It was recommended to transfer to a correctional class, but for parents it was an unfair and unacceptable decision.

I was taken to private schools all summer, but they didn’t take me there either. And at an interview in one of them, the director told me at all: “Do you understand that with such assessments, such reading and writing, they will simply drive you everywhere with a lousy stick and you will never have a place in this society?” Then the first time I heard how my intelligent mother sent a man in three letters. I still did not understand what this means. My mother and I have a very strong sense of injustice towards poor children. And here is such a statement from the director, and even directly to the youngster.

Finally, we were lucky. I went to a school where the principal was not just ready to take - she was happy that we found this school because she herself had a son with dyslexia. She was well versed in the special educational needs of such children. It was not a correctional school, but an ordinary private school. I ended up in an environment where they believed in an individual approach for everyone, so there were children in the class with different needs, for example, a boy with dysarthria (a psychophysical pathology of the nervous system in which a child cannot pronounce words correctly). We studied according to the usual school curriculum, but with additional high-class support from a speech therapist and psychologist.

High school I went externally. I was lucky, my parents found an amazing teacher of the Russian language, who creatively approached my problems, invented various poems and so on, so that I remember the rules. And it worked: despite the fact that I always had a "troika" in Russian, I wrote the exam in the "four"!

- Then the parents sent you to study in Europe?

- Yes, all for the same reasons - my dyslexia has not disappeared. An individual approach to training was still needed. In Russia, this was impossible. I left to study at an international college in Italy and there for the first time I received an official conclusion on several pages about all my cognitive characteristics and additional learning needs. I was examined, several days came for tests, one test could take five hours. I think only then my parents understood and accepted my condition to the end. Although, it seems to me, my father still does not believe in the difficulties of learning. He believes that there are simply people who can struggle with their own characteristics, and there are those who do not want to.

- And he refers you to what category?

- Rather, those who attribute their problems to their own characteristics. At first, at a comprehensive college in Italy, and then at a university in London, I was given permission for all the necessary educational conditions, including extra time for exams, an indulgent attitude to grammar and spelling errors, and even provided a separate room with soundproofing in the library. In general, the conditions are almost perfect, I studied with pleasure.

I chose a linguistic-humanitarian direction. Russian, English, world literature, history, theatrical art, standard mathematics and ecology. And I was able to pass it all myself. Then she entered a prestigious London university with a degree in sociology and media research. And there I studied, also with the privileges laid down for students with dyslexia.

- To what extent have problems with dyslexia been overcome?

- All superficial sufferings are gone, I read well, but I still write poorly. That is, if I have a stupid mistake in the post, I will not cry anymore. And four years ago she would have roared. I accepted my features, learned to live with it.

- Maria, but there are statistics, how many children with such problems come to school?

The numbers in the world are 20-25%. That is, every fifth. This is at least two to three students in each class. In Russia, teachers are sounding the alarm: general underperformance in subjects now, indeed, concerns more than half of the children. But this does not mean that they all have dyslexia or other forms of learning difficulties. This may be pedagogical neglect, but often such problems are the result of a lack of support for a student with dyslexia or another need

- What would you advise to pay attention to in a child’s life?

- I always tell parents: if your child has difficulty developing speech, he lags behind others, if he does not want to draw, if he has difficulty remembering poems or terms, days of the week, seasons or months - these are already important signals. The same thing if the child strangely holds a writing object and a spoon. Especially if he is left-handed. Because left-handed people are more likely to experience dyslexia and other learning difficulties due to the active right hemisphere. We need to watch what happens to the child. If he doesn’t catch up with his peers in some mandatory skills, this is a signal that he needs to contact a specialist.

- Where do you advise parents to contact?

- On the website of the “Association of Parents and Children with Dyslexia” in the “Partners” section there are centers where you can go and correctly diagnose the child. And from October of this year there should appear access to an online training course. All children should be diagnosed from five to six years old. Because the sooner parents grab this, the greater the chances - while the brain is plastic until 12-13 years old.

- Are there any special tests?

- Sure. On the Association’s website there is such a short test that you can check whether dyslexia is related to your child or not, but this is not a diagnosis, but a check for signs. There is also a logopedic questionnaire on the site, from which you can understand how much the child is ready to study at school and kindergarten.

- What are the initiatives of the Association of Parents and Children with Dyslexia?

- Today, the state began to talk about dyslexia and motivates to deal with the problem. The founder of the Association, Maria Piotrovskaya, was able to ensure that two working groups dedicated to this issue appeared in the Ministry of Education. Most of the parents who could not get help for their children, after contacting the Association, learned and became specialists themselves. Of course, this is directly the result of the Association and this is a big breakthrough.

I devote all my time to an applied social project - the Teacher for Russia program. The project is already active in six regions of Russia: Voronezh, Kaluga, Tambov, Novgorod and Nizhny Novgorod regions. This is a program that provides an alternative entrance to the profession for teachers and all correctly motivated people who want to work with children. There is a very strict selection - up to twenty people for a place, but this is not a competition, our 19 candidates are simply not suitable for the program. For two years, each participant undergoes an educational program and simultaneously works in the region. And in parallel, our teachers embody various social projects related to the development of the region. First of all, in the field of culture and education, including the introduction of new teaching methods.

- Which, for example?

- For example, there are guys in the field, they came up with a program called "Physics - to the villages." They go to rural schools, in which there are no equipped classes of physics and chemistry, where they put together experiments with children. Each teacher implements some kind of his own special project in order to interest students, to engage them in joint activities to study the subject. They not only read their subjects and work with children. Their task is to rally parents and local residents around these noble ideas.

- Are teachers preparing to work with children with dyslexia in the framework of the project “Teacher for Russia”?

- I lecture at various venues on how this works and what is needed. This, of course, is not at all the level that is necessary, therefore, as soon as the Association of Parents and Children with Dyslexia releases its online training course to support children with speech difficulties or a standardized methodology for identifying special educational needs, these technologies will be integrated into the training program participants Teacher for Russia.