27.09.2022

What to do about it: Russian senator on a daughter with autism

Now Margarita Nikolaevna has got used to the role of a politician and rarely discusses her feelings, but she decided to talk about personal things with our colleagues from 74.RU. And it seems that a very important conversation has turned out.

Not only for families in which special children grow up, but also for everyone else, because the issue of tolerance and readiness to accept such people is still on the agenda.

She speaks about special children not for the sake of PR, not for the sake of reports from the state stands. She, like no one else, knows what despair, daily hell and happiness from a simple smile of a child “not like everyone else” are. For almost 16 years, Senator Margarita Pavlova has been raising a daughter with autism. When Vika was born, her mother still had neither the status of a member of the Federation Council, nor a good salary, nor influence.

The couple were waiting for their first-born with love and impatience, but something happened. And a special girl was born, who turned the life of a simple Chelyabinsk family of Pavlovs, tempered their character and made them think differently. Partly thanks to her daughter Vika, the current senator came into politics and now at the level of the Russian government raises issues of families with special children.

“Why are you panicking?”

– At first everything was fine. Beacons, probably, appeared at about four months, when the child stopped doing everything that was supposed to be done at that age. That is, it seems to have frozen in its development. There was a tremor, trembling, as if the child was frozen or frightened. Then she did not sit down in time, did not crawl.

The doctors said: “What a wonderful child! We see this for the first time – the healthiest child. ” Then: “Yes, wait, it will crawl,” “Yes, wait, it will go,” “Yes, wait, he will speak,” “Why are you panicking?” By the time she was nine months old, it became clear that something was wrong – all children are developing, but we are not. And since then we have started a marathon of doctors.

The first specialist, an orthopedist, then we came across a very good, qualified one. She, looking at the child, said: “Oooh, you have cerebral palsy. There is no muscle tone, nothing, everything is bad. ” She was the first to see the problem, and we lived with cerebral palsy for up to three years. They put needles, did massages, injections – everything that is required at this age.

There was some progress: we crawled at two years old, went at three, before that I wore it in my arms all the time. But then it became clear that the procedures did not help.

Then there was a consultation of doctors, at which experts already confidently said that it was not cerebral palsy, but atypical autism. Since then we have been living with him.

Translated from the Greek “autism” – withdrawn into oneself. This is a disorder of mental and psychological development, in which there is a pronounced deficit in emotional manifestations, social interaction and communication. The manifestations of autism can be different, often such a child does not show interest in others, does not respond to a name, has speech disorders, and has difficulties with self-care skills. For such people, the established order of things is important, any violation causes discomfort, aggression, hysteria.

Vika still practically does not speak, only individual words and poorly understood. Her active vocabulary is very weak, passive – more, she understands a lot of words, but speaks little – “mom”, “dad” we are talking now.

“It’s much more effective than injections and pills.”

I had to re-read a bunch of literature, get acquainted with experts, and this search continues to this day. Many interesting people come into my life thanks to my daughter, with whom I learn something new. For example, thanks to her, I learned that there is a gluten-free diet, which quite helps children with autism to live much better and happier. We have been on a diet for 12 years now – milk and gluten free. This is much more effective than the injections and pills that were prescribed to her. Correction of nutrition has made life much easier – the child began to sleep, she became calmer, she had some meaning in her eyes.

The bottom line is that complex proteins of gluten and casein are removed, which not every organism is able to digest. Casein is found in dairy products, gluten is found in most whole grains (wheat, rye, oats), in general, the entire children’s diet is based on gluten and casein. At first it was difficult to isolate and translate, but if before my child did not eat anything at all, I could not feed her with anything except milk, then after a diet appeared in our life, we cannot close our mouth to the child, she is now ready to eat all.

It was difficult to overstep our eating behavior, because there are stereotypes when they tell us: “Our grandparents ate, and we will eat”. Absolutely not true, because our grandparents had more sustainable food. I had to remove milk, sour cream, cottage cheese. The most painful thing was to remove the bakery products, pasta and other things, because we always want to pamper our children with something, well, how can it be without sweets, without cookies. Our ancestors were much smarter than us, they ate much less sweets and were less sick with chronic diseases.

I myself did not immediately come to this, because eating behavior is very difficult to change, food beliefs are even more difficult. I had to read a lot, experiment a lot in terms of cooking. My youngest children now know perfectly well what gluten is, what casein is, and they are already correcting themselves. I don’t limit them: if they want gluten-free, gluten-free, gluten-free, please. But they already know that there are such things, and they themselves make a decision. As for Vika, everything is more complicated there: if she gets these proteins, her behavior changes dramatically, hysterics, tears, and whims begin. Therefore, we understand that it is much better for her and for us if there are no such things in her diet. This is proven not just by some laboratory tests, it is proven primarily by the behavior that we see and feel every day.

When we put Vika on a diet, a furious leap in development took place, the child became different. She slept better. Before, we just couldn’t calm her down.

It was generally unbearable, it was an unimaginable nightmare every day. Therefore, as soon as we felt the first results from the diet, we did not want a day to return to the horror with which we lived before.

She and physically began to develop faster, but, perhaps, there have already been some irreversible consequences that we were unable to correct. But we achieved the most important thing – she walks on her own, attended kindergarten, now goes to school, she can walk alone, unattended, for a short time, she orients herself in space, she goes to the toilet on her own, controls herself, and, believe me, for many this is a great progress.

Now we are working to ensure that she has more and more independent skills, so that she learns how to dress, undress, serve herself somehow, and the school where we go now (this is a private institution) is where the entire educational process is aimed at to develop self-reliance skills.

“And then you put yourself together brick by brick.”

In any family, this is a psychological shock. When a family follows a child, parents expect to see a healthy child after all. Now, perhaps, the biggest fear among parents is, God forbid, to give birth to a sick child. This is the most painful blow, because you have certain plans for life, a life perspective, and then bam … and the whole world collapsed in an instant, and you do not know what to do with it. And then you collect yourself brick by brick and try not to lose heart, after all, children are the most precious thing. And this is a shock not only for mom, it is a huge shock for dad, and for the whole family.

It took us three years. It was both depression and inspiration … The family experiences different conflicting feelings. After all, many do not stand up, refuse such children, and you do not blame anyone, because everyone has their own psychological threshold of acceptance. It is very important here that there are specialists nearby, people who will help you make the right decision. I was lucky, I fell into the hands of a very good psychologist, although at that time it seemed to me that I already knew everything, because I myself was a psychologist by education. But she was able to unfold my consciousness, turn minuses into pluses and find a resource to go further. I am still grateful to her, I think this is one of the key areas that need to be developed, including, because many mothers are fixated on the child, because of this, the family can collapse. This will not make the child any better.

From the very beginning, my husband and I have overcome all difficulties together, and his support is invaluable to me. After Vika, we had two more babies, so now the focus of attention is more on ensuring that the brothers accept their older unusual sister and explain to them why this is so. This is also work, because they understand and see all the difficulties and features that we face, and experience them in a special way. Believe me, children experience no less, they are not blind, not deaf, they see what is wrong, and you need to find the right words and place the right beacons so that all of this does not fall apart.

Learned Helplessness Syndrome

We have not gone to psychiatrists for a very long time, only if for information. I was disappointed with the traditional approach to treating autism. That is why we are now at the legislative level trying to change the algorithms that do not work for us.

The base is, of course, medicine, but I believe that medicine begins with diet. In our country, not all psychiatrists realize and understand the importance of this foundation, a few doctors in our country who are truly scientifically and practically convinced that it works, and recommend it to their patients. And this is sad, because the diet made life easier for many children and brought them to a qualitatively new level.

The second is pedagogy. There are many problems that cannot be cured with the help of medicine, but they can be corrected pedagogically, and here the gold standard in working with people with autism is ABA (Applied Behavior Analysis) technologies. In our country, this has already been accepted, realized, and this is the basis for work with special children. Not the entire legislative framework is still geared towards this, but we are moving towards this, we are striving, some basics have already been laid down – there are resource classes, kindergartens, schools are already accepting such children.

The next step is accompanied accommodation, and in this sense, we found understanding with the head of our city, Natalya Petrovna Kotova. She heard me, understood the task, and just the other day our first municipal apartment was opened. It will teach children with mental disabilities to live independently, and this is cool, because such a project is the first in our country. That is, there are such apartments, but they are always implemented on the basis of the non-profit sector, which means: there is a grant – there is an apartment, no grant – no apartment, the project exists as long as there is money. Here, however, there is a fundamentally different approach: on the basis of the municipality, we will have such apartments in every district, where special children will come and learn to live independently.

The problem is this: even when I come to school for my child, I see how she does much more without me than with me. She can wash dishes there, and cook something, and when I see how she behaves at school, I understand that we and 50% of her potential do not allow her to develop with our overprotection. This is called the syndrome of learned helplessness, that is, it is easier for mom, dad, grandmother to do everything for the child: button up the fly, braid the hair, wipe the mouth with a napkin … And these elderly mothers run after their already grown children and fasten their fly. Well, you must admit, it looks awful. Most of the things these people can do on their own, if they are properly taught.

Therefore, such a project appeared as accompanied living, when there is a mentor nearby who, with the help of ABA technologies, helps to direct a person in the right direction and help him to do this or that action. The task is to pull out all the potential that is possible from this special person and bring him to the level of independence. They are, as a rule, trainees, well trained, this process takes a little more time, but then they can unite in these apartments, live for several people with a mentor. They cook for themselves, clean themselves, and meet with their parents on weekends. Agree, this life is closer to ordinary, all children, when they grow up, leave the family – this is normal.

A person gradually acquires a circle of acquaintances, specialists, friends who help him to move on in life and not be so dependent on his parents. And parents do not need to be so dependent on their child.

But this is much more than living your whole life under the overprotective care of your parents. Several years ago we had a completely wild case: an old woman died, and when the apartment was opened, it turned out that not one person, but two lived in the apartment. The second was her special child, whom she was afraid to show to the neighbors. Nobody knew, only the postman, who brought two pensions. She didn’t even take him out for a walk, there was so much fear. You understand how we have advanced in this understanding! Now I have Vika quietly walking in the yard, no one mocks her, I had more fear to let her out into the yard than it turned out in reality. Everyone knows her, an unusual girl sways on a swing, smiles at everyone, does not offend anyone, does no harm to anyone.

“From pity for these people, we went into a resourceful state”

What’s next? Further, what an ordinary person has in life is his family, his work. Therefore, now we are starting to work to create jobs for such people, so that they get accustomed to work, so that they learn not only to be carpenters, bricklayers and shoemakers, but also so that the range of professions expands – somewhere in crop production, somewhere in workshops. to appear.

More and more entrepreneurs are beginning to take an interest in this category, because, for example, people with autism are very good at doing repetitive work. Normotypical people are bored of shifting something from one place to another, but these people are more tolerant of such work, for him, on the contrary, everything is clear, everything is the same, and now he is ready to do it for days. Of course, all people with autism are different, and it is impossible to find a universal key, a universal profession and educate everyone. Therefore, in the West, the approach to such people is more flexible, they look at a person and say: “This is good for him,” “Let’s try this with this,” and they begin to work. This is one of the tasks that we set – to create as many jobs as possible.

One of the last dialogues that we organized in the Federation Council was this: I asked the Minister of Sports that we need programs for people with mental disabilities so that they can become assistant coaches. Now such children are actively starting to play sports, this movement is gaining momentum in our country – our children swim, play tennis, gymnastics, athletics. We have only one Arina Kutepova (a titled gymnast with Down syndrome), more than three thousand children came to sports, special children who not only have a physical disability, their intellect is impaired, and it is many times more difficult to work with such children. A federation has appeared in the Chelyabinsk region, which deals with our mental athletes.

Now they have already grown and proved their importance, the need for the country with those medals, which they bring, including from international competitions, so they may well work as assistant coaches. It is necessary that they do not leave the sport, so that they pull more and more children with them – everyone will find work. But in order to get a job, you need education, you need a diploma, and we do not have programs for such children. Therefore, we had a very constructive talk with the minister at the plenary session, where he supported me. The Ministry of Sports sees and understands this problem and is ready to move forward. The minister promised us that such programs will appear, and people with mental disabilities will be able to study in colleges. so that they pull up more and more children – everyone will find work. But in order to get a job, you need education, you need a diploma, and we do not have programs for such children. Therefore, we had a very constructive talk with the minister at the plenary session, where he supported me.

The Ministry of Sports sees and understands this problem and is ready to move forward. The minister promised us that such programs will appear, and people with mental disabilities will be able to study in colleges. so that they pull up more and more children – everyone will find work. But in order to get a job, you need education, you need a diploma, and we do not have programs for such children. Therefore, we had a very constructive talk with the minister at the plenary session, where he supported me. The Ministry of Sports sees and understands this problem and is ready to move forward. The minister promised us that such programs will appear, and people with mental disabilities will be able to study in colleges.

If creative people knew more about the characteristics of these children, they would also find more applications for them. It is not for nothing that April 2 was proclaimed World Autism Awareness Day. You need to tell, then information will fly into someone’s ears and some kind of non-standard solution will be born. Because this is a special category who can and knows how to work with special people, not using their weakness, but helping them, because the temptation to use them is very great.

We now have excellent horse clubs, they, with the help of hippotherapy, involve children in sports, including professional sports. I have Vika all summer, she was engaged in hippotherapy all autumn, and we were told that she has the prospect of going in for sports professionally and being successful in this area. Some of the children play the drums, the main thing is to find some meaning for this person, for this child, so that he goes his own way.

Looking back, it seems to me that the work has already been colossal. Now everyone understands who special children, special people are. There just has to be some kind of humanity. From the plane of pity for these people, we moved into a resource state, because there is tremendous energy hidden.

We are all different, yes, it happens, such a misfortune happens. So, you need to understand why this happened in your life. I believe that people with autism carry a special message to us so that we understand what is wrong with our civilization, why there are more and more such children. We need to realize this, because nothing is accidental.

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