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Special children of ordinary parents. If a special child is born into a family, give birth to a special child

home How do older children feel when a child is born into the family? special child ? What kind of relationship do their parents want to see? Do parents have the right special child give him younger brothers and sisters? Do healthy children have the right to own life

, after the death of their parents or are they obliged to become caregivers for their sick relative? Let's talk about this.

The birth of a special child
Psychologists say that when a special child is born, many parents experience the same feelings as if their child had died. This is indeed true - the ideal baby from the baby food commercial - the dreamed child - no longer exists. There is a real baby, so long-awaited and so frightening.

He doesn’t know how confused his parents are, but he needs love no less than anyone else, perhaps it’s already difficult for him to live due to health problems, and he especially needs his mom and dad.

If the diagnosis is made immediately after birth, parents may hesitate for some time whether to take the child or leave him in the maternity hospital. These hesitations lead to bewilderment and confusion for older children; they do not understand what has changed, because just now mom and dad were happy and full of dreams about a newborn, they promised to bring a little brother or sister from the maternity hospital, but now they don’t want him. Children are scared that for some reason they might be abandoned.

If parents consult with older children about what to do, the situation becomes clearer to the children - the parents want to abandon the newborn because he is sick. Eight-year-old Alina, the sister of a newborn boy with Down syndrome, asked: “Mom, what if I get sick, will you leave me too?” at her brother, who was being bottle-fed by a nurse, she thought: “Something is wrong with the mother, not with the child.”

Death of parents Do you think the appearance of a special child in a family is the fate of the whole family or just his mother and father? Should brothers and sisters of a person with disabilities

health to take care of him after the death of his parents? Children with disabilities develop better in an environment of healthy children, in addition, parents of a special child -, they have the right to dream about big family and have many children. However, this does not always meet with understanding in society.

Galina, Polina's mother (Down syndrome)
“Yesterday, my best friend talked for a very long time about the topic that I, as a mother, do not have the right to limit the rights of my son and impose a “special” sister on him in the future. And I said that the fate of our family is his fate too.
And she said that I should completely forget about giving Polina another brother or sister, because it would turn out that all my children would have to work for Polina. In general, I am not a mother, but an egoist, because I am going to pin my problems on my children. I've been thinking about this all night."
Quote from a thread on a forum for parents of children with Down syndrome.

Who is right? Psychologists believe that the only pathological cause for the birth of a child, this is a desire to love him, but if parents want still healthy children, so that there is someone to care for a special child after their death, then this can lead to problems.

The situation is especially acute in countries such as Russia, Ukraine, etc., where family is less important for a person than personal fulfillment, and social protection population suffers from severe developmental delays. Even if the parents did not try to force healthy children to care for a child with a disability after their death, a person still does not feel the moral right to send his sister or brother to a terrible place of social care for disabled people - a boarding school. If he gives, he suffers; if he doesn’t give, he suffers.

There are two ways out of this seeming deadlock. The first is to build a normal social network, the second is even more difficult for many people: if the family feels like a single whole and everyone is ready to help, caring for a sick family member is taken for granted.

I once rode in a taxi with a man from Tajikistan - they talked about his family - he has two wives, 37 brothers and sisters (this is together with cousins, right?), his mother already has 96 grandchildren, and he himself has three children from his eldest his wife (and the youngest is also planning :)) I asked how they treat the birth of a sick child in his homeland, do parents often leave special children in the maternity hospital? He said that in Tajikistan, in general, children are not abandoned - this is considered a huge shame, greater than, for example, pregnancy unmarried girl. In addition, he said that children do not abandon their old parents. His mother has been bedridden for several years and is cared for by one of her daughters and two daughters-in-law. One of his cousins has been ill since birth. It is believed that God marked the family because he allowed a child with disabilities to be born in it. Just in case, I clarified what kind of good religion this is in Tajikistan - it turned out to be Islam.

There are two children in our family: the eldest girl was born an ordinary, healthy child. The second baby was born with Down syndrome. Matvey was an unplanned child, I was 32 years old when I found out that I was pregnant again. I had a normal pregnancy, but Matvey decided to be born ahead of schedule. I had a Caesarean section, my son was born with severe jaundice, weighed 2600 kg, he had slanted eyes, the doctors immediately realized that the baby was born with Down syndrome. The first days, when we were still in the hospital, I didn’t trust anyone. For some reason, it seemed to me that the doctors had conspired and were specifically telling me about this terrible diagnosis.

At first, Matvey was fed through a tube, since he was born weak and weighed little. For some reason I was forbidden to breastfeed, but I decided to feed him breast milk, Despite everything. I remember how nervous I was all the time cleaning my breast pump. Due to constant pumping, then feeding with expressed milk through a tube and sunbathing under a special lamp, I did not sleep at all for the first ten days after giving birth.

We were discharged from the hospital on the 17th day, I practically ran away from there because I believed that the walls at home were healing, and the doctors were only hindering us.

For two months we waited in line for the test, lived in anticipation of a miracle, but still we already loved our baby. After he was tested for his genotype, we realized that from now on we would have an unusual baby in our family, a baby with Down syndrome.

To be honest, I still don’t accept this diagnosis, but in spite of my enemies I go forward and fight for his future.

At home, I realized that something was wrong with me. It turned out that during the Caesarean my ureter was damaged. As a result, I was admitted to the hospital, but I still continued to pump in order to feed Matvey breast milk when leaving the hospital. I ended up breastfeeding him until he was one year and eight months old.

The first year is all yours free time I surfed the Internet and looked for information about Matvey’s diagnosis. I massaged him six times a day, we studied with cards, I used all the techniques I could find. All this happened in a small family in which four of us lived at that time (me, my husband and two children).

I went to work when he was about 3 years old. My job allows me to maneuver, my colleagues know that the child is the most important thing for me and I can break free and come to him at any moment.

I have a wonderful child, he is making progress, he is praised in the kindergarten he goes to. There are several such gardens, they are created specifically for special children. We also go to rehabilitation center, where they study with Matvey for free. He's just now starting to talk. His first word was “Dad”, he spoke that way to everyone back then. When he went to kindergarten, the first thing he said to me in the evening when I picked him up was “Mom” (smiles).

Matvey is a special child, he is not like ordinary children. If an ordinary child needs to be told 2 times in order for him to remember or do something, then he needs to repeat it eight to ten times. And if ordinary child can learn something on his own, then Matvey needs to constantly show something, name it, explain it, everything is clear, understandable, and accessible. And such children are strong repeaters and this helps a lot in their studies.

My husband periodically drinks alcohol, but I never connected Matvey’s diagnosis with my husband’s habit. The only question that still torments me is how do people who drink to the extreme, heavier and more often than my husband, have completely healthy children, why is that?

Recently I caught myself thinking that when my baby finds himself in a situation in which ordinary children find themselves around him, I immediately begin to make excuses: “You understand, he unusual child..." Why am I doing this? Can not understand.

There are times when you want to close yourself off from everyone and cry, but how can you do without them? This is a release, you need to relieve stress somehow.

All this time my daughter helps me a lot, she loves to play with Matvey, they talk, she plays the piano for him, sings, and tells him fairy tales. They get along great and that makes me happy.

Many people think that children with Down syndrome are very calm and apathetic, but this is not so. Our Matvey is constantly on the move, running, dancing, smiling, he brings us a lot of joy. Although, just like everyone else, it happens to him Bad mood, we may quarrel a little, but we always make up in the end.

It became much easier for me when I started going to self-help groups. Thanks to the communication that I receive on them, I finally began to see some positive moments in my life, before I simply did not notice them. For example, we only recently began to dine not in front of the TV and separately, but all together at the dining table. This brought us very close and at such moments I feel that everything is fine with us.

What do I want? More harmonious moments in life, so that my family and friends are happy.

Today I try to live for today and not plan for the distant future. I'm tired of this. Living today is much easier and better, you don’t put off happy moments until tomorrow, you are already living in them. When a person finds himself in the same situation as mine, he willy-nilly has to climb, move forward and live, which is what I do. Besides, I will live a full life and happy life, and not just exist. I never stop hoping for the best, every day, here and now.

Lyudmila and Daniil

I found out I was pregnant at 28 weeks. I worked a lot then and the only thing that embarrassed me about my then state was that I wanted to sleep all the time. I didn’t pay attention to the lack of menstruation, since I had problems with my cycle before.

I had a normal pregnancy, when my plug came out, I called an ambulance for the first time and they took me to the maternity hospital. At the maternity hospital, they sent me home and told me to come back when contractions began to occur frequently. As a result, I lived with my water breaking for a week. During this time, I came to the maternity hospital several times, but every time I was sent back. As a result, when my temperature rose greatly and I stopped feeling the baby move, I was finally hospitalized.
Danik was pulled out with a special suction, and the birth lasted 12 hours. The only thing I wanted at that moment was for all this to end as soon as possible.

When Danya was finally born, he was given one on the Apgar scale, and that was simply because his heart was beating. After that he was taken to intensive care. The doctors then immediately said: “It’s better to refuse, he won’t even live until the morning.” Our diagnosis: cerebral palsy, microcephaly, preconvulsive state of epileptic nature. Danya spent a month in intensive care, all this time he was on artificial ventilation. There he was diagnosed with pneumonia. In six months, he suffered from pneumonia 3 times.

For the first month he had an IV in his head, and I couldn’t sleep for long enough to constantly monitor it. A month later, when I was fast asleep, my roommate woke me up. I remember her whisper and my joy: “Lyudka, Danya is crying there!” (smiles).

His first year of life was the most “fun”. He had constant convulsions, he was constantly screaming, throwing up, it was a nightmare. Danya does not focus his gaze, does not walk, does not speak, and understands little. At the same time, he grows, hears, breathes, eats. He takes anti-seizure medication every day and sedative powders at night.

Last year Danya had the flu and now he has chronic bronchitis. Then we had to stay in the hospital for a while, and you know, worse attitude I have never seen anything like it in hospitals and clinics. I remember how one day they brought us a three-liter jar of some kind of liquid for lunch. The fact is that Danya eats only soft food, and they ground borscht, porridge, cutlet - all together. It’s good that at least they didn’t add compote.

Our day starts around 9-10 am: we wake up, I feed him. Then he watches TV a little, that is, how he watches and reacts to sound. If good weather, we go for a walk for 2-3 hours. Now we are walking in a regular stroller, but I’m afraid to think further, since we will need a special stroller, which is impossible to buy, unless someone gives it to us.

Until she was four years old, I fed Danya in my arms and carried her around the house in my arms. Then the rehabilitation center, which we periodically go to, gave us a special wheelchair in which it is convenient to move children with cerebral palsy. Today he eats and moves around the house in it. We bathe once every three days, he loves the bath and when I wash his hair, it’s a great pleasure for him!

I don't work, but I get paid as a personal assistant for my own child. Together with the disability pension, our monthly income is more than two thousand lei. Danik's father and I divorced when he was two years old. Now I live with my common-law husband. How do we exist? Help comes from somewhere all the time, we don’t wait for anyone, but we never refuse.

There are moments when you sit and think: “That’s it, I can’t do this anymore,” but five minutes pass and you realize that you can’t fall apart.

I know that such a test is not given just like that. I got it because I can survive it. Although, everyone can probably do it, but not everyone can do it. I want more children. And Dani’s diagnosis doesn’t scare me. I know that someone is even worse, someone is even more sick.

For five years (Daniil turns five on April 3rd – editor’s note), we tried almost everything to somehow improve his condition. Today I realized that he needs two things: care and a good attitude.

With Danik, I learned patience, reinforced concrete.

I don’t regret that then, almost five years ago, I left Danya. As much as is given, so much strength will be enough. Who knows what I would be like if he were different... I rejoice every day when I see that Danik is nearby, when he does not suffer, does not experience pain, I appreciate his every smile and no matter what happens to us, I believe that good people much more than it seems.

Natalia and Alexander

Sashuka was born at 42 weeks of pregnancy, he is our first and so far only child. When he was born, 20% of his skin was covered birthmarks. We spent the first year of his life in the hospital, Sasha underwent 5 operations to remove the largest moles.

All this happened in another country, not in Moldova. When Sasha was one year and a month old, we returned to our homeland. I was 22 years old then, I had loving husband, wealth and a child who bravely withstood all these operations. At that moment I thought that life was just beginning...

Sashuka had already begun to talk, reciting poems by heart. And then his speech began to disappear, he stopped responding to his name, that is, he did not react to it at all. My mother-in-law began to suspect that something was wrong with him, but we did not attach any importance to this. In the end, we gave up and passed the examination. The diagnosis that the doctor made sounded scary - epilepsy and autism. They immediately prescribed pills, which we took for six months. All these six months my son was a vegetable, I sat him in one place - he could sit for hours and look at one point. At night he slept for several hours, after which he woke up, screamed, cried, I thought I would go crazy. Now I’m telling you and I don’t understand how I survived it all.

When Sasha turned 2.5 years old, we went abroad again to get examined there. When the doctor saw what pills we had been taking all this time, he scolded us and told us to “get off” them immediately. I remember how, after the cancellation, Sashuka truly came to life and began to sing for the first time. My mother and I cried with happiness.

When we returned home, we went to the Voynichel center, where my son and I were tested to make sure that Sasha had autism. After that, we were recommended a training center, which we still go to today.

Sasha doesn’t speak well, but he eats on his own and goes to the toilet on his own if asked. But he absolutely does not interact with the outside world. We worked for 2.5 years to get him to jump on his own! But other parents don’t even remember the first time this happened to their child. It is difficult to persuade him to eat something new, this is either through force or after long negotiations.

Our normal day goes like this: we wake up at 9-10 in the morning, I feed him and we go to a regular kindergarten for 2-3 hours so that he can spend at least a little time among the children. After kindergarten we go to ABA therapy classes. At this time I also study, but with other children. When this story with autism began, I completed an ABA training course, and recently entered psychopedagogy. Why can't I study with Sasha? Because I have no authority in his eyes, and I will not be able to be objective. After classes, we pick up dad and all go home together.

In our family it was like this: at first, when we found out about Sasha’s peculiarity, I cried, then my husband began to have a crisis. It was hard, we quarreled and grew apart, but then everything fell into place. I can’t give advice, but when there is such a child in a family, parents should get through it on their own and be gentler with each other. Today we really want a second child.

Officially they say that we have about 2,000 children across the country diagnosed with autism, but in fact, there are many more. Because not many people go to doctors to get a diagnosis. When there is a child with autism in the family, time is golden. The sooner you start practicing, the better the result will be.

The most difficult thing for us is when something hurts Sasha, but he can’t tell. Recently he had a toothache, it was a nightmare. Out of pain and hopelessness, he simply took my finger and put it on the tooth that hurt. We had difficulty finding a doctor who would see us. I called all the clinics in Chisinau, some recommended general anesthesia, others, when they heard about autism, immediately refused. And only one doctor saw us and cured us.

We, parents of special children, do not need pity, we need tolerance and acceptance. Yes, he is special, yes, he screams. But I can't do anything about it. We want to not be looked at as aliens. I can't understand, is it so hard to just smile?

I remember last year we went to Disneyland. My dad is a truck driver and he sometimes takes us to Europe on excursions. So, there was a parade in honor of the anniversary of Desneyland, Sashuka and I were sitting on the lawn, he was in a stroller, and a girl of about seven, a foreigner, was sitting next to him. And he accidentally kicked her on the shoulder. She turned around, and I explained to her that this is how it is, he has autism and he didn’t do it out of malice. Her mother heard and said: “I’ve been working with such children for 14 years.” We got into a conversation, she explained all this to the girl. And so she turned around again, smiled at Sasha and stroked him. So much for the difference in mentality.

I went through a stage when I was embarrassed by his diagnosis. He is the same as everyone else. The main thing for me is that he is healthy and that he reacts to the world. A dog ran by, he noticed it - happiness!

At 27 years old, I psychologically celebrate myself at 45. I’ve had to go through a lot during all this time.

What would I say to parents who are faced with such a test? We need to stop feeling sorry for ourselves, take our lives in our hands and fight, move on. And I highly recommend valerian tincture, it helps to calm down.

We call Sasha Superman, because for us he is a real hero!

Olga and Yana

I have been living with HIV infection for about 20 years. When I was 23, I gave birth to my first and only daughter. Back then I had no idea that I had HIV. This became clear a couple of years later, and quite by accident.

Until the last moment, I was sure that my daughter was born healthy, but Yana was also diagnosed with HIV; she was 3 years old at the time. It was a shock for me. Most likely, the infection occurred during childbirth. At that time there was no treatment or prevention, even tests for CD4 cells were paid. I remember how I made them through acquaintances, for money. One of the doctors who was treating Yana at the time once told me: “Your daughter could fail at any moment.”

When Yana was little, she had to be tested every three months to determine the amount of virus in her blood. She cried so much that her lips were chapped until they bled. I did everything possible to ease her and my worries: I changed clinics, changed doctors, bought toys and asked doctors to give them to her for her bravery.

I never gave up, I always knew that my Yana should live a decent, happy life. And I did everything possible for this.

Guilt? Of course it was, and constantly. Just recently I realized that I haven’t bought kiwi for a long time, simply because Yana doesn’t like kiwi. But I love them (smiles).

Yana was 10 years old when we went on vacation to the sea. Everything was fine, and one evening I told her everything. Her first question was: “Am I going to die?” I answered it, as well as ten similar ones. I was just reading the book “Peering into the Sun.” Life without fear of death" by Irvin Yalom. If not for her, questions about death would have taken me by surprise.

Since childhood, I took Yana to all my meetings, parties, and trainings. Over time, we came up with the “Teenergizer” project, in which I am the founder and head of the board of the IBO “Eurasian Association of Teenagers and Youth “Teenergizer”, and Yana is the head of the board of a detailed association in Ukraine. We both support this project and live the development of programs for teenagers in the EECA region and in Ukraine.

One day, Yana was 15-16 years old at the time, I saw a note on her page in social network: “I’m tired, tired of living with double standards - I have HIV.” I was worried, I immediately called her, we talked, and it became clear to me that this was a deliberate step. She moved toward revealing her status gradually, consciously. I am not at all worried about her future and am confident that she will start a family, give birth to healthy children, and I will still be able to look after my grandchildren.

Discrimination, to one degree or another, periodically pops up in our lives. Just recently we conducted training at a Ukrainian university. And after Yana’s speech, one of the students asks me: “Is Yana a drug addict?” I say "No". “Yeah, so her mom is on drugs? Otherwise, where did Yana get HIV?” It was one of the most authoritative universities in Ukraine.

I have always given and continue to give Yana the right to choose; I think this will help her develop as a person.

How do we work together? Great. We have one golden rule - never go to bed in a quarrel.

Thank you public association“Mamele pentru Viata” for assistance in organizing the interview.

A few days ago, the family of Yulia Kovalchuk and Alexey Chumakov celebrated a significant date - five years since the couple’s wedding. During this time, Julia managed to give birth to a child, but since the couple hides the child’s face, journalists suspected that he was special.

In honor of the big event, the couple went on air on Malakhov’s show and talked about their lives. The newlyweds got married five years ago at the capital's registry office. Then the singer was 30 years old, and her beloved was 32 years old. Before the official marriage, the couple was together for five years. After they signed, they left for beautiful Italy, since they have their own home there.

People call this milestone a wooden wedding, and in honor of this date, the couple spoke about many things that they kept secret. In this family, they generally don’t like to discuss personal things with journalists. They even allowed the media into their mansion, which had been under construction for several years. As far as we know, the couple spent several million dollars to build this house. Moreover, the artists talked about their daughter and showed her face.

Although the couple came to the program and told a lot of interesting things, they never showed the child. Perhaps there will be a second episode of the program about their lives. The one-year-old child was never brought to the studio, which is understandable for the parents. But the photo from the birth was still shown; this happened at the end of the program, when the couple sang a song together.

Most of all, the couple talked about how and where they live. We are, of course, talking about their house, built on plot of land twenty acres. There is everything you need for life, and besides this, there are many more interesting things. The house itself is not very large, about one hundred square meters, but besides the house there are other buildings on the site.

Just look at the mini-spa center, which has not only a sauna and jacuzzi, but also a hammam and a swimming pool. In addition, there is space on the site for comfortable relaxation on the street, as well as sunbathing. Yulia even wanted to make a vegetable garden, but her husband did not allow it because he was afraid that the plants would die.

There is also room in the mansion for a child; more than half of the living space was given to him. The inside of the house itself is painted in bed colors. Since the singer loves fireplaces, almost all rooms have them.

When Alexey showed the house, he remembered the times when everything was not so rosy. The first time he arrived in the capital he lived under open air on a bench near the hotel. According to him, in the first year of his life he ate cheap crackers because there was no money. The man admitted that he really values everything that he got from his work.

His wife also shared her memories of a difficult life when she said that due to a lack of money, she ate cheese curds, as they were filling. Because of her work, and she danced, the singer was not afraid to gain weight.

Among other things, Kovalchuk said that after the birth of her daughter, she coped with the baby herself, and a little later her mother came to her aid. “I turned into a zombie,” the singer shared. “Thanks to my mother, I was at least able to take a shower safely.”
By the way, the singer’s mother and father live not far from their daughter and see their granddaughter almost every day. In addition, Amelia has a nanny. Julia admitted that she was really looking forward to this child, so she was afraid to miss the most important points related to the development of the baby.

“I remember being so worried when my daughter went to the potty for the first time, and Lesha and I were on tour at that time,” Kovalchuk shared. - The nanny told me about Amelia’s achievement. Afterwards I burst into tears. I was offended that I didn’t see this.”

It is worth noting that Yulia and Alexey hid the name of the heiress for six months, but in April exclusive interview Julia finally revealed the intrigue to one of the publications. By the way, having learned about the pregnancy, the artists decided to tell anyone about it, even the closest people. Star couple was afraid possible complications. As a result, Kovalchuk spent nine months calmly before the birth of her daughter.

In 1988, a son was born to a Chinese resident, Zou Hongyan. But as a result of a difficult birth, the baby was born with a terrible diagnosis that ruined his chances for a normal life - cerebral palsy.

Doctors advised the young mother to write a waiver for her child, warning her about all the difficulties of his condition and caring for him. But the woman was firm in her decision to leave her son no matter what. Sadly, even one of her closest people, her husband, did not support her.

Everyone was sure that the boy was doomed to a terrible life, that such a diagnosis only allowed him to exist, and not to live fully.

But the brave woman snapped: she would not abandon the child. Then she filed for divorce from her husband, who did not share her intentions, and subsequently devoted herself entirely to raising and caring for her beloved boy, whom it was decided to name Ding Ding.

In order to somehow stay afloat, Zou was forced to take three jobs at the same time, and the rest of her free time the woman played educational games with her son.

She tried her best to help him develop his intellectual and emotional abilities. She was even able to teach him to hold bamboo sticks, and the boy, with difficulty, was able to use them.

“I did everything so that my son would never be ashamed of his characteristics. And, although I tried to surround him with affection and love, I was also very strict with him. This was the only way to make him work tirelessly to get rid of his problems.” - Zou shares his methods of education.

And now, 29 years later, this boy, whom many gave up on in the first days of his life, graduated from Peking University. He is a Bachelor of Science in Engineering and environment. And not so long ago he was accepted into the Faculty of Law at Harvard University.

His mother, who accomplished a real feat for her son, is immensely proud of him! What she was able to achieve, how she developed the abilities of a boy with such a diagnosis, deserves respect! Ding Ding himself admits that he owes everything to his mother.