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

What do you need to know?

Of course, I cannot know what all mothers of special children want to hear. I can only speak for 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 only be glad!

It is necessary to take into account such a moment ... A woman who has already accepted the state of her child and her situation is very different from the one who has not yet accepted. Roughly speaking, I have already internally experienced all these events, and I will not be touched by any careless questions.

The only thing that annoys me is when, in response to my worries, they tell me “you have absolutely ordinary child, it's all right" - I'll explain why later. But I don’t suffer from it, I don’t get depressed, I just get a little annoyed. 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 my life ... And with those who have not yet experienced this event, it is better to communicate carefully. Therefore, if the child of your friend is suddenly diagnosed with autism, mental retardation, or something else ... You definitely need to communicate with her carefully. Because it's almost impossible to experience this in one day or one month...

How to communicate?

So what's the best way to say it? Personally, I dreamed of hearing this (I realized this quite recently): “I am very sorry that your child has such problems. This is really scary. And these are really difficult tests ... I would like to support you, I would like to help somehow. I've never been in that position myself and I can't fully understand your feelings. But if you want to speak out, just cry, talk - you can always contact me. And if I can give you something else of value - tell me, I will gladly give.

If you are just getting to know the mother of a special child ... I think it's better not to comment on it in any way, just listen.

On-duty phrases like “Everything will be fine!”, “You can do it!”, “You are a heroine, I could not do that!” - may be inappropriate. Because even doctors in most cases do not know if 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 who is unfamiliar with your situation will sound like a grin.

You have to understand that mothers of special children live in a different world... Those who have already experienced their grief, let all the “wrong” words go past their ears. Those who did not survive - close, perceive everything very sharply. Therefore, sometimes it is really worth not discussing the topic of children with such women.

A special child requires a lot of strength and makes you 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, at 10 months it seemed to everyone that she more than a year. Now I'm proud of how she dances. Lisa still looks older than her age. Perhaps due to the high growth.

And while Lisa conquers with her awareness, Lesha at 2.5 years old looks 1.5. Even among boys. Even among non-speakers. Well, 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 a diagnosis written on their face. Especially the little ones. Determining that something is wrong with him is very difficult. 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 can suddenly hit another. Throw sand. There is grass. Lick the children's slide. 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 escaping.

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

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

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 speaks very well too! For them, this is joy and victory. But for those around...

However, some nevertheless soon realize that in the case of this girl, the problem is not in “ill manners”. But this does not add compassion to everyone. I remember once chatting on the playground with her mother ... And the girl began to go somewhere (they happen regularly). And some granny arrogantly yelled: “Woman! Watch where your daughter goes! Your girl needs to be watched!”

It was said with such disdain, with such hostility and arrogance... It would hurt me very much. Perhaps I would have fought later with this granny. But my friend... This did not break her equanimity. She calmly caught up with her daughter, returned to her place, and continued to communicate with me, trying to look after the child more carefully.

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 find the right words in a conversation. This is about the same as it is difficult for women without children to really understand and support a tired mother with a baby. As a woman who is happy in her family, it is difficult to understand and support a friend who has gone through a divorce ... But we can just listen. Do not try to give support and understanding (or, God forbid, advice!) ... But just listen.

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

Personally, when I was convinced that everything would be fine, I heard something like this: “You are a suspicious and anxious mother. You create problems for yourself out of the blue. Inventing problems where there are none. In fact, everything is fine with your child. Doctors are always talking nonsense. So put this nonsense out of your head, everything will be fine!”

It hurt me, because I have never been a suspicious mother. And in general, it didn’t bother me that Lesha only mumbled up to 10 months, not 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 did not know then that this was an alarming sign!). I myself often told others not to cheat themselves because the baby says 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 other red rags. But in any case, unreasonable optimism, unsolicited advice and denial of the problem are undesirable.

And finally, I will add that if you have any other questions on this topic, feel free to ask me. What I know, I will answer. Do not be afraid to hurt me somehow, I will answer with pleasure.

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

For each parent, his 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. These people and their children are not often talked about and written about. But fortunately, the "conspiracy of silence" is gradually fading away.

Now in Russia there are about 600,000 disabled children and many kids with various physical disabilities and pronounced developmental features. The families in which these children grow up are faced with difficulties about which the general public does not know much - and where ignorance, stereotypes and fears multiply. "Such" children are born only to drug addicts and alcoholics, fathers leave families with "such" babies, healthy children certainly suffer from communicating with "such" ones, etc. etc. Health workers often suggest that parents leave a "special" baby already in the hospital - they say, give birth to a new one - and many moms and dads really follow this advice. Fortunately, more and more families, especially in large cities where both information and help are more accessible, decide to raise their children on their own, trying to provide them with the maximum opportunities for treatment and rehabilitation.

When the diagnosis is made

Parents learn about some violations in the development of the baby already at his 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 sense of loss. When the baby is still developing in the womb, mom and dad are already imagining what he will be like, making plans, cherishing hopes related to his future life and opportunities. And few people are ready 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 parents have been waiting for. But simultaneously with the experience of grief, they must take care of the baby - the real one, which they now have and who needs their care - the stronger, the more complex the problems with his health and development. Another thing is if the diagnosis is clarified late (especially in the case when parents notice before specialists that something is going "somehow wrong"). Then even the worst news can bring relief - after all, they finally relieve adults from the pangs of the unknown and give them the opportunity to take concrete action. In it hard time the role of specialists is especially important - at this stage, as a rule, doctors. They are required to give parents full information about the diagnosis of the child, about the limitations associated with it and the possibilities for the development of the baby. 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 myths about vague development prospects, for example, for children with Down syndrome. Of course, parents need the truth - the unknown is more painful and scary. But to intimidate them and paint exceptionally terrible pictures means to deprive already psychologically depressed people of the strength necessary to care for a helpless child.

Brothers and sisters of "special" children

Should I have another baby? What threatens the appearance of a child with special needs in the family of older, "normal" children? How will they live if, God forbid, we are gone? Parental concerns are not unfounded. Indeed, the birth of a “not such” child is stressful for all family members, including children, because they, along 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, it is the lack of resources. Parents should objectively devote a lot of time and effort to a sick baby - the baby needs numerous medical procedures, including hospitalizations, rehabilitation activities (gymnastics, massage, etc.); in addition, you need to raise money - for medicines, doctors, teachers. Not surprisingly, healthy children often feel neglected. They are offended, angry at mom and dad and, of course, at their younger brother or sister - now he / she gets all parental love! Whether adults will be able to correctly distribute attention between children depends both on themselves and on the support that relatives can provide to the family - for example, grandparents.

Often, part of the responsibility 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 desire to patronize the defenseless baby, the elder begins to experience anger and even hatred, because this "sick" 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 the care of a child with developmental disabilities does not harm either one or the other, if the measure is observed. When the older child approaches school age, he faces a new problem: often parents demand special success from him - as they say, "for himself 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 drop. But the elder also exists! And it's not easy for him right now. Fortunately, he is healthy and develops normally, but he is very vulnerable and prone to fears - he is afraid, for example, of getting infected from a younger one. And he is also grieving. Try to find time that only the elder will get entirely.

Don't babysit him. It is useful to involve an older child in the care of a "special" baby, but it is precisely to involve, encouraging for help, and not to shift "adult" responsibility onto a preschooler (schoolchild).

Explain in a language accessible to the child what the problem of his brother / sister is. Many childhood fears are generated by the notion that a disorder in the development of a "special" child is contagious. Sometimes healthy child inspires himself with the idea that in the future he will certainly fall ill, stop moving or talking.

Respect his interests. Do not force the elder to always yield to the younger in everything - in 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 first-born has developmental disabilities, is a difficult question. On the one hand, a "special" baby requires a lot of attention, as well as high financial costs. On the other hand, the appearance of a healthy heir gives parents the opportunity to feel like an ordinary family: to solve the problem of procreation, to plunge into "normal" problems. True, sometimes a second child is born as a "rescue service" - they say, they will grow up and in the future will take care of the helpless elder. In this case, the younger one from the very beginning feels insignificant, less valuable to his parents - and, as a rule, does not burn with love for the one he is called to patronize.

Important: Before deciding on a second child, it makes sense to undergo medical 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 all" - and the burden becomes quite feasible.

Grandmothers and grandfathers

How do grandparents feel when they hear 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 is it for him? There are frequent cases when the husband's parents do not accept their "special" grandson and blame his mother for the fact that the baby turned out to be "not like that." Of course, this is a very painful situation for the mother. But it is based on the eternal maternal desire to protect her child at any cost, mixed with guilt (after all, a grandmother is also a mother, only her little blood has grown up a long time ago). Do not forget also that older relatives are representatives of a generation that is characterized by an even less tolerant attitude towards the disabled than young people. They are not so easy to get to abandon stereotypes - for example, from the belief that children with Down syndrome do not walk, do not talk and do not recognize loved ones. However, fortunately, the case is different. Grandparents can be a huge help to families with "special" children. Alas, often such babies cannot be attached to Kindergarten. If the grandparents partially take care of the grandson, the mother has a little time to simply relax, and sometimes even go to work.

It is not uncommon for a husband's parents not to accept a "special" grandson and blame his mother for his illness.

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

• Ignore critical remarks. No doubt, words can hurt, and you often feel guilty and unable to 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 opportunities for development. 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 intellect, and a cleft lip can be successfully surgical treatment;
• Be grateful for help, even if it's small. Yes, it is difficult for you now, and, most likely, much more difficult than for 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 - is sometimes completely extinguished in a crisis associated with the birth of a sick child. The father leaves the family, and all the worries associated with caring for the baby and with his material support fall on the shoulders of the mother.

However, the flight of the father is not a pattern at all. In the United States, for example, the percentage of divorces in families with children with certain disabilities is the same as the national average. When a "not such" heir is born, not only mom grieves - dad, as a rule, feels the same pain. Perhaps the position of the father is still a little easier - after all, the main hardships associated with caring for a child go to a woman, and a man has the opportunity to go to work, being distracted from difficult thoughts. On the other hand, dads are less likely to share their experiences - many silently suffer from grief and helplessness, being unable to just 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 dad of a "special" baby

• Remember: the family needs you. Without you, the life of a child (children) and a wife will become much more complicated, and many types of treatment and rehabilitation of a sick baby may turn out to be completely inaccessible. Do not leave your loved ones in trouble - now they need you more than ever!
• Talk to your wife about your feelings. Don't be afraid to tell her about the grief, fear, or guilt that plagues you. It will become easier, and shared experiences will help you and your spouse feel like "one team."
• Take part in the care of 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 household and organizational problems so that the spouse has time to relax and recuperate. Ultimately, this will help you too: a woman, exhausted by experiences and difficulties, is unlikely to be able to devote time and attention to her husband.
• Do not forget that you are a husband and wife, and not just the parents of a "special" baby. You are still loving friend other people - and you will have to remind your spouse of this, because mothers have a tendency to completely immerse themselves in the problems of the child.
• Look for those who know what it's like for you. Many organizations that provide assistance to children with special needs have parent clubs - not only mothers, but also fathers go there. Communication with other fathers of "special" babies will give you the opportunity to share your feelings with people who will surely understand them.

Education: taboo or green light?

In our country, the universal right to education is declared, but for some children it is impossible to realize it - and if possible, then not in full 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). The ones that do exist are often just "storage rooms" where children are rented 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. V Lately integrative kindergartens began to appear in Moscow and St. Petersburg — both children with special needs and ordinary children go there. As a rule, the groups in them are small - 10-15 people, of which 1-2 are "special" pupils. As for schools, there are specialized institutions for children with hearing, vision and musculoskeletal disorders, as well as for children with speech problems, for children with a delay mental development and for children with mental retardation. Some schools recruit classes for children with a complex defect - 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 taken there.

Many children with cerebral palsy and other movement disorders can attend mainstream schools

Many children with cerebral palsy and other motor disabilities can study in a public school - the main thing is that the building is adapted for wheelchairs, and the teachers are friendly and qualified. There are already schools in Moscow that practice inclusive (inclusive) education, and their number is growing (yet, however, not fast enough). Parents are concerned about the question: how do ordinary children treat their "special" comrade? Just like adults treat him - moms, dads and teachers. First of all, teachers are the ones who set the tone for communication in the classroom. If the teacher behaves correctly, the students accept their "dissimilar" comrades well and even take care of such children with the whole class.

If the child looks significantly different from peers

Any lack of appearance (shortened limbs, "cleft lip", etc.), unfortunately, in most cases makes the child a target for peer ridicule. But this does not mean that one should humbly come to terms with reality. You need to work on the problem - and in the case of a favorable development of events, others will simply stop noticing the features of your baby's appearance. The mechanism is simple: you do not constantly focus on the appearance of loved ones.

So what do you need to work on...

• personal relationship with the child. If the baby is constantly called "poor" and constantly talk about his lack, he will certainly have problems in communicating with other children. Be calm in relation to the problem of the child, be attentive to his interests and achievements - and you will increase the chances that the crumbs will form adequate self-esteem, and he will better adapt to the peer group.
• The attitude of teachers (teachers, educators). They should not allow a child to be teased because of imperfections in appearance. But to put the baby in the position of "sick", from which the demand is less, is also wrong.
• Children's presentation skills. Teach your baby to "show" his peculiarity, talking about it calmly and confidently. For example, like this: "And I have such a hand, I was born with such a" (if the baby is missing a few fingers).

What then?

The most difficult and yet unresolved problem in our country is the possibility of independent living and employment of adults with severe developmental disorders (for example, mental retardation, mental illness). In many Western countries, there are programs of preferential employment and so-called supported living. 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 "Road to the World", created by specialists from the Center for Curative Pedagogics. It helps "special" adults to achieve the maximum possible independence, provides them with employment and partially removes the burden of responsibility from the shoulders of their elderly parents. There is a village near St. Petersburg, Svetlana, 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 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 raise the question again, to which we seem to have already answered. What does a "special" child bring to his family? Yes, grief and difficulties - but only whether? Many parents, speaking of pain, despair and fear, at the same time claim that babies helped them take a fresh look at the concept of "love ", to learn to enjoy the little and appreciate what is available, gave me a chance to reevaluate a lot in my life.

Translation: Irina Goncharova

Editor: Anna Nurullina

Our Facebook group: https://www.facebook.com/specialtranslations

Our public VKontakte: https://vk.com/public57544087

I liked the material - help those who need help:

copying full text for distribution in social networks and forums is possible only by quoting publications from the official pages of Special Translations or through a link to the site. When quoting text on other sites, put the full translation heading at the beginning of the text.

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

1. Mothers of special children suffer from loneliness. I desperately lack communication with friends and family. I really try to keep a positive attitude and most of the time you see me smiling. Perhaps in your eyes I look like a Supermom who can solve any problem, is always busy and gets enough help. But I'm very lonely. Being a mother of a special child means there is an acute shortage of time in order to support such important and right relationship with other people. I could talk a lot and in detail here about how I take care of the child. Do you remember the time when your children were very young? Lots of things to do and not a single free second. But there is more. Something in my case is the need to spread my maternal love on my second child and my husband, who are constantly in "standby mode", needing my attention. I have too little time to call or write to friends and even relatives, and if they do not make themselves known, I feel terribly guilty in front of them for my inattention. A terrible sense of guilt weighs on me. This vicious circle from which it is difficult to get out. I long for those days when we - mothers - gathered somewhere for fresh air, entertained and educated our children when I could visit a friend for a cup of tea and chat with her while my child plays nearby.

1. Mothers of special children have to make a titanic effort to save their marriage. They fight for their marital happiness despite the high rate of divorce in such families, and are forced to do so, being in a state of constant stress that inevitably accompanies life with special child. I completely rely on my husband, he is mine best friend and sometimes I expect and want too much from him. He is my hero, reliable support, patient and loving man Without his support, my children would simply be gone. 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 our kids in six years, but every few months we have a two-hour romantic date at a Japanese restaurant. Our marriage is everything, so we try to steal those moments whenever we can.
2. Moms of special children are not easy to offend or piss off. Despite what we claim in our statuses in in 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 is quite natural to start with the words: “I don’t know how to ask you, how to formulate this…”. I am especially touched when people are sensitive and considerate enough to ask how my child is feeling or to involve him in a common activity, meal or game. I am happy to meet such attempts.
3. Mothers of special children are afraid of death. We are afraid that our children may get sick and die. We are afraid of the thought that our husbands may be in trouble and we will be left alone, but the strongest fear lives in the depths of our souls - the fear that all our life will pass in 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 trouble.
4. Mothers of children with special needs understand the language of touch very well. It is the first language we learn, and sometimes this is the way our children speak best. This natural therapeutic language is soothing, guiding and healing. It should be the main one in every family.

Mothers of special children know what a priceless gift it is to hear from their child: "I love you." Very for a long time I didn't know if my daughter Zoe would ever talk. When she was just born, her love for me was evidenced by her contented sighs, which I heard, pressing her to my chest. When my daughter grew up a little, I carried her in my arms and then her happy silence and calmness were an expression of love. 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 gentler. One evening, when she was already in bed, I leaned over to her to wish Good night. At that moment, Zoe raised her hand, stroked my cheek and whispered, “I love you mom for taking care of me so much.”