How to communicate with mothers of special children: how to support and not offend? Special children of ordinary parents If the “special” is the eldest

Good afternoon, dear readers! Some women ask: how to communicate with mothers of special children? What should you say to a friend whose child has been given some serious diagnosis? Which words will be appropriate and which ones will not?

What do you need to know?

Of course, I cannot know what all mothers of special children want to hear. I can only say about myself. As I understand it, my feelings are similar to the feelings of most women in similar situations. But all people are different. And there may be exceptions... If someone shares their vision in the comments, I will be only glad!

This point needs to be taken into account... A woman who has already accepted the condition of her child and her situation is very different from one who has not yet accepted. Roughly speaking, I have already internally experienced all these events, and no careless questions will affect me.

The only thing that irritates me is when, in response to my concerns, they tell me “you have a completely ordinary child, it’s all normal” - I’ll explain why later. But I don't suffer from it, I don't get depressed, I just get a little irritated. Sometimes - not a little, but a lot... But there is nothing painful for me anymore.

But it was not always so. And all women go through a period of acceptance. Sometimes - faster, sometimes - all your life... And with those who have not yet experienced this event, it is better to communicate carefully. Therefore, if your friend’s child was suddenly diagnosed with autism, mental retardation, or something else... You definitely need to communicate with her carefully. Because it is almost impossible to survive this in one day or one month...

How to communicate?

So what is better to say? Personally, I dreamed of hearing this (I realized this only recently): “I’m very sorry that your child has such problems. This is truly scary. And these are really difficult tests... I would like to support you, I would like to help somehow. I have never been in this position myself and cannot fully understand your feelings. But if you want to talk it out, just cry, chat, you can always contact me. And if I can give you something else of value, tell me, I will gladly give it.”

If you are just getting acquainted with the mother of a special child... It seems to me that it is better not to comment on this in any way, just listen.

Standard phrases like “Everything will be fine!”, “You can handle it!”, “You’re a heroine, I couldn’t do that!” - may be inappropriate. Because even doctors in most cases do not know whether everything will be fine. As in our case with Lesha. And often, on the contrary, doctors are sure that everything will be bad. And the comment of a simple woman unfamiliar with your situation will sound like a grin.

We must understand that mothers of special children live in a different world... Those who have already experienced their grief ignore all the “wrong” words. Those who haven’t experienced it close down and take everything very seriously. Therefore, sometimes it is really worth not discussing the topic of children with such women.

A special child requires a lot of strength and forces him to undergo special training. Breaks many beliefs. For example, almost all women unconsciously want to be proud of their child. I remember how proud I was of Lisa. She started walking at 9 months, and at 10 months it seemed to everyone that she was over a year old. Now I'm proud of how she dances. And to this day Lisa looks older than her age. Possibly due to his height.

And while Lisa captivates with her awareness, Lesha at 2.5 years old looks 1.5. Even among boys. Even among non-speakers. Well, or at best - for 2 years. And there is absolutely nothing to be proud of in front of other mothers.

But we are still very lucky! Many mothers of special children are not only not proud, but ashamed of the child’s behavior. They can be understood. Children with autism or mental retardation do not have the diagnosis written on their face. Especially for little ones. It is very difficult to determine that something is wrong with him. Only if you yourself are the mother of the same child, who has studied a dozen books and passed a dozen neurologists.

And from the outside, 95% of people perceive your baby as simply inadequate, ill-mannered, hysterical, spoiled, etc.

Such a child may suddenly hit another. Throwing sand. There is grass. Lick the children's slide. It's wildly hysterical, even if he is already 4-5 years old. Sometimes such a child has to be carried home in his arms, screaming and struggling.

I have a friend who for me is an example of calmness and acceptance of her child. It seems to me that in her situation I would have closed myself off very much. And she is calm, open, and easily communicates with all women.

From the outside it seems that her daughter is 5 years old, and she is simply very ill-mannered. The girl pesters all people with questions, seems very intrusive, constantly asks everything again, speaks loudly, tactlessly. Other children reject her, but adults tolerate her for the first minute, then begin to get irritated. They are amazed at her “bad manners.”

But in fact, this girl is much older. Much. And she has serious features. Such that the fact that she walks and talks at all is already a victory. Her parents did not even dare to hope for such a thing. But she walks and talks. He even speaks very well! For them this is joy and victory. But for those around...

However, some people soon realize that in the case of this girl the problem is not “bad manners.” But this does not add compassion to everyone. I remember one day I was chatting with her mother on the playground... And the girl began to go somewhere (this happens to them regularly). And some granny arrogantly shouted: “Woman! Watch where your daughter goes! You need to keep an eye on your girl!”

It was said with such disdain, with such hostility and arrogance... It would have really hurt me. Perhaps I would have fought with this granny later. But my friend... This did not disturb her equanimity. She calmly caught up with her daughter, returned her to her place, and continued to communicate with me, trying to keep an eye on the child more closely.

If you have never had a special child, it is very difficult to really understand what such mothers go through. It is difficult to feel all the subtleties and choose the right words in a conversation. This is about the same as how it is difficult for women without children to really understand and support a tired mother with a baby. As a woman with a happy family, it is difficult to understand and support a friend who has gone through a divorce... But we can just listen. Don't try to give support and understanding (or, God forbid, advice!)... But just listen.

Statements that everything is normal and everything will be fine are dangerous because they only increase misunderstanding, the wall between people. They also carry a ban on emotions.

Personally, when they convinced me that everything would be fine, I heard something like this: “You are a suspicious and anxious mother. You're creating problems for yourself out of the blue. You invent difficulties where there are none. In fact, everything is fine with your child. And doctors always spin all sorts of nonsense. So get this nonsense out of your head, everything will be fine!”

This hurt me because I have never been a suspicious mother. And in general, it didn’t bother me that Lesha only mooed until he was 10 months old, without trying to repeat the syllables! And the lack of words in 1.9 didn’t bother me either. And even the absence of a pointing gesture (I didn’t know then that this was an alarming sign!). I myself often told those around me not to stress themselves out because the baby speaks only 2 words a year instead of the 10 prescribed by the neurologist... And in general, I did not understand the anxiety of mothers of healthy children. Therefore, such statements addressed to me have always worked like a red rag for a bull.

Other women may have different red rags. But in any case, unfounded optimism, unsolicited advice and denial of the problem are undesirable.

And finally, I’ll add that if you have any other questions on this topic, you can feel free to ask me. I will answer what I know. You don’t have to be afraid to offend me in some way, I’ll answer with pleasure.

A short film about families with children with severe cerebral palsy:

For every parent, their child is exceptional, special, not like everyone else. But there are mothers and fathers who would give everything in the world for their baby to become the most ordinary, average child. These people and their children are not often spoken or written about. But fortunately, the “conspiracy of silence” is gradually fading away.

Now in Russia there are about 600 thousand disabled children and many children with certain physical disabilities and pronounced developmental features. The families in which these children grow up face difficulties about which not much is known to the general public - and where there is ignorance, stereotypes and fears breed. “Such” children are born only to drug addicts and alcoholics, fathers leave families with “such” children, healthy children certainly suffer from communicating with “such” children - etc. and so on. Health workers often suggest that parents leave their “special” baby in the maternity hospital - they say, give birth to a new one - and many mothers and fathers actually follow this advice. Fortunately, more and more families, especially in large cities, where information and help are more accessible, are deciding to raise their children on their own, trying to provide them with maximum opportunities for treatment and rehabilitation.

When is the diagnosis made?

Parents learn about some disorders in the development of the baby already at birth - for example, about a cleft lip or. Others remain unrecognized for several years—say, . But in any case, the reaction to the news that the child is not like everyone else is severe stress, shock and a feeling of loss. When the baby is still developing in the womb, mom and dad are already vividly imagining what he will be like, making plans, cherishing hopes associated with his future life and possibilities. And few people are prepared for the birth of a baby who cannot live up to these hopes. The feeling of loss reflects the loss of that healthy, “ordinary” child that the parents had been waiting for. But at the same time as they experience grief, they must take care of the baby - the real one, which they now have and who needs their care - the more complex the problems with his health and development. It’s a different matter if the diagnosis is revealed late (especially in the case when parents notice before specialists that something is going “somehow wrong”). Then even the worst news can bring relief - because it finally frees adults from the torment of uncertainty and gives them the opportunity to take concrete actions. In this difficult time, the role of specialists is especially important - at this stage, as a rule, doctors. They are required to provide parents with complete information about the child’s diagnosis, the associated limitations and the child’s development opportunities. Unfortunately, not many of our doctors know how to correctly convey the necessary information to moms and dads. Even in the medical community, there are widespread myths about the vague development prospects, for example, of children with Down syndrome. Of course, parents need the truth - the unknown is more painful and scary. But to intimidate them and paint exceptionally scary pictures means depriving already psychologically depressed people of the strength necessary to care for a helpless child.

Brothers and sisters of "special" children

Should I have another child? What are the consequences of having a child with special needs in a family for older, “normal” children? How will they live if, God forbid, we are gone? Parental concerns are not unfounded. Indeed, the birth of a “different” child is stressful for all family members, including children, because they, together with their parents, experience grief and loss. But it's not only that.

If "special" is junior

A family where several children are growing up - and one of them is “special” - faces many problems. First of all, there is a shortage of resources. Parents objectively must devote a lot of time and effort to a sick baby - the baby requires numerous medical procedures, including hospitalization, rehabilitation measures (gymnastics, massage, etc.); In addition, you need to get money - for medicines, doctors, teachers. It's no wonder that healthy children often feel neglected. They are offended, angry with mom and dad and, of course, with their younger brother or sister - he/she now gets all the parental love! Whether adults will be able to correctly distribute attention between children depends both on themselves and on the support that loved ones can provide to the family - for example, grandparents.

Often, part of the responsibilities for caring for a “special” baby is entrusted to a healthy child. At the same time, parents often overestimate the strength of their little helper and underestimate the difficulties that he has to face. As a result, instead of love and the desire to care for the defenseless baby, the elder begins to experience anger and even hatred, because this “patient” has actually deprived him of the lifestyle that all his peers lead. The other extreme is the complete isolation of children from each other. Involving a healthy child in caring for a baby with developmental disabilities does not harm either one or the other, if the measure is observed. When an older child approaches school age, he is faced with a new problem: parents often demand special success from him - as they say, “for themselves and for that guy.” It is he who must live up to the expectations mourned at the birth of a “special” baby. Of course, under the burden of double responsibility, the child experiences terrible stress - he is simply unable to meet the expectations of adults.

How to support an older child

Pay attention to him. Yes, a child with special needs “squeezes” you almost to the last drop. But the elder also exists! And it’s not easy for him now either. Fortunately, he is healthy and developing normally, but he is very vulnerable and prone to fears - he is afraid, for example, of getting infected from his younger one. And he is grieving too. Try to find time that only the eldest will have entirely.

Don't babysit him. It is useful to involve an older child in caring for a “special” baby, but to involve him, encouraging him for his help, and not shift “adult” responsibility onto the preschooler (schoolchild).

Explain in language the child can understand what his brother/sister’s problem is. Many childhood fears generated by the idea that a disorder in the development of a “special” child is contagious. Sometimes a healthy child inspires himself with the idea that he, too, will certainly get sick in the future and stop moving or talking.

Respect his interests. Do not force the elder to always give in to the younger in everything - this way you will only achieve that a healthy child will begin to quietly hate the “usurper”.

If "special" is senior

Whether or not to give birth to a second child if the firstborn has developmental disabilities is a difficult question. On the one hand, a “special” baby requires a lot of attention, as well as large financial costs. On the other hand, the appearance of a healthy heir gives parents the opportunity to feel like an ordinary family: solve the problem of procreation, immerse themselves in “normal” problems. True, sometimes a second child is given birth as a “rescue service” - they say that he will grow up and in the future will take care of the helpless elder. In this case, the youngest from the very beginning feels insignificant, less valuable to his parents - and, as a rule, does not glow with love for the one whom he is called to care for.

Important: Before deciding on a second child, it makes sense to undergo medical and genetic counseling. In some cases, the likelihood of having a child with a developmental disorder is very high.

If there are many children in the family

Good news for large families: practice shows that the birth of a “special” child here causes less stress for both parents and children. And in the future, responsibility for a grown brother or sister is distributed “to everyone” - and the load becomes quite manageable.

Grandmothers and grandfathers

How do grandparents feel when they learn about the birth of a “special” child? The sadness is that they will be deprived of the joy of communicating with a “normal” grandson or granddaughter. Fear - usually hidden - that it was their “defective” genes that caused the baby’s problems. Pain for your adult child - why should he care? There are often cases when the husband’s parents do not accept their “special” grandson and blame his mother for the fact that the baby turned out “not like that.” Of course, this is a very painful situation for the mother. But at its core is the eternal maternal desire to protect her child at any cost, mixed with a sense of guilt (after all, the grandmother is also a mother, only her little blood has long since grown up). Do not forget also that older relatives are representatives of a generation that is characterized by an even less tolerant attitude towards people with disabilities than younger people. It is not so easy to get them to abandon stereotypes - for example, the belief that children with Down syndrome do not walk, do not talk, and do not recognize their loved ones. However, fortunately, it happens differently. Grandparents can be of great help to families with “special” children. Unfortunately, often such children cannot be placed in kindergarten. If the grandparents partially take care of their grandson, the mother has a little time to simply relax, and sometimes even go to work.

There are often cases when the husband’s parents do not accept their “special” grandson and blame the mother for his illness.

If grandparents do not accept the child, criticize or blame you:

ignore critical remarks. There is no doubt, words can hurt, and you often feel guilty and can’t cope with anything. But perhaps it will be easier for you to accept reproaches and criticism if you know that grandmothers’ behavior is caused by fear and guilt, and not at all by a desire to make you suffer;
provide information about the child’s problems and development opportunities. Many members of the older generation do not know that children with Down syndrome can be taught a lot, that a child with cerebral palsy can have a highly developed intelligence, and a “cleft lip” can be successfully treated with surgery;
be grateful for help, even if it is small. Yes, it’s difficult for you now, and most likely much more difficult than for your grandparents, and refusing help may seem unfair. But it’s not easy for them either.

Being the father of a "special" child

In our country, the problem of fathers in families with “special” children, alas, is very relevant. The sense of responsibility for loved ones - often already weakened in men - sometimes completely extinguishes in a crisis associated with the birth of a sick child. The father leaves the family, and all the worries related to caring for the baby and his financial support fall on the mother’s shoulders.

However, the father's flight is not a pattern at all. In the United States, for example, the rate of divorce in families with children with certain disabilities is the same as the national average. When a “wrong” heir is born, it’s not only the mother who grieves—the father, as a rule, feels the same pain. Perhaps the father’s position is still a little easier - after all, the main burdens associated with caring for a child fall on the woman, and the man has the opportunity to go to work, distracted from heavy thoughts. On the other hand, dads are less likely to share their experiences - many suffer silently from grief and helplessness, unable to simply talk to anyone. They are tormented by the inability to cure the child or otherwise radically improve the situation. A man is supposed to act actively and “solve problems”, but in this case it is impossible to “solve the problem completely” and immediately make the baby healthy. This makes fathers feel guilty and helpless, and sometimes alienates them from the family and forces them to seek protection from unbearable experiences.

If you are the father of a “special” baby

Remember: your family needs you. Without you, the life of the child (children) and wife will be significantly more complicated, and many types of treatment and rehabilitation of the sick little one may turn out to be completely unavailable. Don't leave your loved ones in trouble - they need you now more than ever!
Talk to your wife about your feelings. Don't be afraid to tell her about the grief, fear or guilt that is tormenting you. It will become easier, and the shared experiences will help you and your spouse feel like “one team.”
Take part in caring for the child, in his upbringing, in solving everyday problems. You may feel awkward and inept around your wife at first—this will pass.
Participate in solving everyday and organizational problems so that your spouse has time to rest and recuperate. Ultimately, this will help you too: a woman driven to the point of exhaustion by worries and difficulties is unlikely to be able to devote time and attention to her husband.
Do not forget that you are husband and wife, and not just the parents of a “special” baby. You are still people who love each other - and you will have to remind your spouse of this, since mothers have a tendency to become completely immersed in the child’s problems.
Seek out those who know what you're going through. Many organizations that provide assistance to children with special needs have parent clubs - not only mothers, but also fathers go there. Connecting with other dads of “special” kids will give you the opportunity to share your feelings with people who will surely understand them.

Education: taboo or green light?

Our country declares a universal right to education, but for some children it is impossible to realize it - and if possible, then not fully or in a suboptimal way. There are practically no kindergartens for children with severe developmental disorders and their combinations (for example, visual impairment and mental retardation at the same time). Those that exist are often just “storage chambers” where children are placed while their parents are working. Children with mental retardation are often denied even the opportunity to attend a specialized kindergarten for children with intellectual disabilities. But there is also good news. Recently, integrative kindergartens have begun to appear in Moscow and St. Petersburg; both children with special needs and ordinary children go there. As a rule, their groups are small - 10-15 people, 1-2 of them are “special” pupils. As for schools, there are specialized institutions for children with hearing, vision and musculoskeletal impairments, as well as for children with speech problems, for children with mental retardation and for children with mental retardation. Some schools enroll classes of children with complex disabilities - for example, in schools for children with hearing and visual impairments there may be classes where children who also have mental retardation study. However, there are very few such classes - and not every child will be accepted there.

Many children with cerebral palsy and other motor disorders can study in regular schools

Many children with cerebral palsy and other movement disorders can study in a public school - the main thing is that the building is suitable for wheelchair movement, and the teachers are friendly and qualified. There are already schools in Moscow that practice inclusive education, and their number is growing (though not fast enough yet). Parents are concerned with the question: how do ordinary children feel about their “special” friend? The same way adults treat him - mothers, fathers and teachers. Teachers come first, because they set the tone of communication in the classroom. If the teacher behaves correctly, the students accept their “unlike” friends well and even look after such children as a whole class.

If the child looks significantly different from his peers

Any defect in appearance (short limbs, cleft lip, etc.), unfortunately, in most cases makes the child a target for ridicule by peers. But this does not mean that you should meekly accept reality. You need to work on the problem - and if events develop favorably, those around you will simply stop noticing the features of your baby’s appearance. The mechanism is simple: you don’t constantly focus on the appearance of your loved ones.

So, what do you need to work on...

Own attitude towards the child. If a child is always called “poor” and constantly talked about his shortcomings, he will certainly have problems communicating with other children. Show calm in relation to the child’s problem, be attentive to his interests and achievements - and you will increase the chances that the baby will develop adequate self-esteem and adapt better to the group of peers.
Attitude of teachers (teachers, educators). They should not allow the child to be teased because of flaws in appearance. But putting the baby in the position of a “sick person”, from whom there is less demand, is also wrong.
Child's self-presentation skills. Teach your child to “present” his peculiarity, talking about it calmly and confidently. For example, like this: “And I have this hand, I was born with this” (if the baby is missing several fingers).

What then?

The most difficult and not yet solved problem in our country: the possibility of independent life and employment for adults with severe developmental disorders (for example, mental retardation, mental illness). Many Western countries have programs for preferential employment and so-called supported accommodation. People with certain developmental disabilities can live separately from their parents in hotel-type apartments. Social workers help them organize work, leisure and communication. There are also rural communes where such people grow fruits, vegetables or flowers, take care of animals and can partially or even fully support themselves. There are very few such programs in Russia. One of them is “The Road to the World,” created by specialists from the Center for Curative Pedagogy. It helps “special” adults achieve the greatest possible independence, ensures their employment and partially removes the burden of responsibility from the shoulders of their elderly parents. There is a village called Svetlana near St. Petersburg, where people with mental retardation and mental disorders live and farm together with volunteers. The future of these projects is still uncertain, but the very fact of their existence is extremely important - both for the families of “special” children who have grown up, and for society as a whole.

Tragedy or opportunity for growth?

In conclusion, I would like to again raise a question that we seem to have already answered. What does a “special” child bring to his family? Yes, grief and difficulties - but only that? Many parents, speaking about pain, despair and fear, at the same time claim that the kids helped them take a fresh look at the concept of “love” ", learning to enjoy little things and appreciate what you have, gave me a chance to re-evaluate a lot in my life.

Translation: Irina Goncharova

Editor: Anna Nurullina

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I am the mother of a special child. There are things that only I know and I don’t tell them to anyone - or I told them so long ago that other mothers have already forgotten. Here are six of them.

Mothers of special needs children suffer from loneliness. I desperately miss communicating with friends and family. I really try to maintain a positive attitude and most of the time you will see me smiling. Perhaps in your eyes I look like a Super Mom who can solve any problem, is always busy and gets enough help. But I'm very lonely. Being a mother of a special needs child means there is an acute lack of time to maintain such important and necessary relationships with other people. I could talk here a lot and in detail about how I take care of the child. Do you remember the time when your children were very little? Lots of things to do and not a single free second. But there's something else. Something in my case is the need to extend my motherly love to my second child and my husband, who are constantly in “waiting mode”, needing my attention. I have too little time to call or write to friends and even relatives, and if they don’t make themselves known, I feel terribly guilty towards them for my inattention. A terrible feeling of guilt weighs on me. This is a vicious circle from which it is difficult to get out. I long for the days when we mothers would gather somewhere outdoors, entertain and teach our children, when I could drop in on a friend for a cup of tea and chat with her while my child played nearby.

Mothers of special children have to make Herculean efforts to save their marriage. They fight for their family happiness despite the high rate of divorce in such families, and are forced to do this while being in a state of constant stress that inevitably accompanies life with a special needs child. I rely entirely on my husband, he is my best friend and sometimes I expect and want too much from him. He is my hero, a reliable support, a patient and loving man, without his support my children would simply be lost. Their well-being is directly related to the well-being of our marriage. My husband and I haven't spent a single night away from the kids in six years, but every few months we go on a two-hour romantic date at a Japanese restaurant. Our marriage is what it's all about, so we try to steal those moments whenever we can.
Mothers of special children are not easily offended or enraged. Despite what we claim in our statuses on social networks, we are very vulnerable, and life constantly presents us with unpleasant surprises. So if you want to ask us something, just do it. And it’s quite natural to start with the words: “I don’t know how to ask you, how to formulate this...”. I find it especially touching when people are considerate and considerate enough to ask how my child is doing, or to involve him in a shared activity, meal, or play. I am happy to meet such attempts.
Mothers of special children are afraid of death. We are afraid that our children may get sick and die. We are scared by the thought that something bad might happen to our husbands and we will be left alone, but the strongest fear lives in the depths of our souls - the fear that our whole life will be spent caring for children. We see how people we know who have lost their children experience the bitterness of loss, and we try not to think about it. On the surface, we try to live life to the fullest and not forget that we are not immune from disaster.
Mothers of children with special needs understand the language of touch very well. It is the first language we learn, and sometimes it is this method of communication that our children speak best. This natural therapeutic language soothes, guides and heals. It should be the main one in every family.

Mothers of special needs children know what a priceless gift it is to hear from their child: “I love you.” For a long time, I didn't know if my daughter Zoey would ever talk. When she was just born, her contented sighs, which I heard as I held her to my chest, spoke of her love for me. When my daughter grew up a little, I carried her in my arms and then the expression of love was her happy silence and calmness. Zoe spoke her first words as a little girl, and every time she spoke, I cried. Now she is ten years old and her words are becoming wiser and more tender. One evening, when she was already lying in bed, I leaned over to say goodnight. At that moment, Zoey raised her hand, stroked my cheek and whispered: “I love you, Mom, for taking such good care of me.”