When a baby with Down Syndrome is born. Talking to a psychologist

DOWNSIDE UP Early Intervention Centre for children with Down Syndrome A. Kirtoki, N. Rostova

When a baby with Down Syndrome is born Talking to a psychologist

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Children with Down Syndrome 1 and features of their development

There are times when each of us has to face something unexpected, something we are not ready for. New parents may see having a baby with Down syndrome as a back-breaking job, a heavy cross to bear or as a happy occasion which is about to enrich their family and social life and open new horizons. The authors of this brochure believe that communicating happily with the baby and recognizing not only what makes him different from others, but also his unique qualities, is the right track to gaining a happy experience of being parents.

In this brochure practicing psychologists discuss the most acute questions which parents ask them during sessions, describe real relationship stories and give advice on taking care of such children and bringing them up starting from the first months of their life.

This brochure is for families of children with special needs, teachers, doctors, psychologists and social workers.

Series “Children with Down Syndrome and features of their development�

A. Kirtoki, N. Rostova

When a baby with Down Syndrome is born Talking to a psychologist The second edition, revised and enlarged

Charity fund Downside up, Moscow, 2013

CONTENTS Pain. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 Self-denial and self-sacrifice. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 How to tell your family, friends and colleagues about the diagnosis of your child. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 Parental competence. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 And still it hurts. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10 Dialogue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 11 Feeding your baby. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Should you take your baby in your arms? . . . . . . . . . . . . . . . . . . . . . 14 Why do babies cry?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15 The role of a father. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 When daddy is not at home. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Jealousy. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 When your baby has to be taken to hospital . . . . . . . . . . . . . . . . . . . 22 Crises. Problems of behavior and disobedience. Parents’ authority. . 23 Communicating with peers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 Kindergarten . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 When your child goes out into the world for the first time. . . . . . . . . 28 Your child needs to play. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 30 Will your child speak?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 Intelligence . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 33 School. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Sexuality. Sexual education. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 36 What kind of future awaits my child?. . . . . . . . . . . . . . . . . . . . . . . . . 40 How a psychologist can help. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41

We address this brochure to parents who’ve had a baby with Down syndrome born and hope that it will help reduce the feelings of perplexity and uncertainty which usually appear when the diagnosis is announced.

Nowadays it’s easy to find lots of information on Down syndrome, but it’s often contradictory and categorical. Yes, it’s information on Down syndrome and its symptoms: facts, rumors, conjectures, predictions…

And all this is about the syndrome itself, not about a certain baby – Dima, Liza, Anya. Where can you find any information about the little one dozing off beside you, the one that closed his or her eyes and entrusted the honor of taking care of him to the world of adults – to parents, who gave him this life, to doctors, who helped him come into our world safely. There is not a single book where you can read about your one and only unique baby. Our brochure is not an exception. But here we would like to discuss some questions which we were often asked by parents of children with Down syndrome during the past ten years of Downside Up’s existence.

The authors of the brochure would like to thank families which took part in programs of psychological and pedagogical support in “Downside Up” early intervention centre.

Pain Can anything be more painful than suddenly finding out that something is wrong with the child you were so much looking forward to have, that he or she was born to be not what you were picturing him in mind for 9 months? You just can’t believe that your baby will never be the one you wanted to see. Down syndrome is forever. And this is unfair, scary, it hurts! The world has broken into pieces, collapsed, betrayed you and turned away from you. And this pain, this unbearable pain… It will never go away, it just can’t.

The pain is so strong! Perhaps, it consists of a large fusion of feelings. They are dudgeon, fear, anger and probably also feelings of guilt and helplessness. Who can those feelings be addressed to? How can you cope with them? Who can you share them with? Where can you find help? It seems that neither can anything help and soothe the pain, nor can anyone call off what has happened. And still, as a rule, despite this pain, the mother and the father have to look up information about Down syndrome and try to work out what to tell their family and friends about the newly born baby.

Of course, every person experiences his own kinds of doubts and stress, but, anyway, most questions that worry parents during this period concern how their baby is going to develop, what makes him different from other kids and what his future is going to be like.

Here predictions of many specialists regarding the future of a child and his parents can often be groundless. They can just make parents’ worries worse or offer them something like a sugar-coated pill which doesn’t cure of this painful anxiety but only makes it go and hide deeper inside. This anxiety can be really lessened only with the help of information which will be useful for a certain mother or father, grandmother or grandfather. Perhaps some of them need to meet other parents in order to understand how they can love their child. Or to hear another child with Down syndrome saying to them: “Hey, what an awesome cell phone you’ve got!” Or maybe getting the needed information will help them look around and understand better what exactly they need in order to feel confident in such a challenging situation. It is likely that while talking to other families that have children with Down syndrome, they will see what problems they have to solve and also find out which specialists can help them take care of their child, because when a baby is born, you have to understand how to look after him or her, how to bring him or her up and to educate. Every family has their own knowledge and traditions of bringing children up, but when such an “unusual” baby is born, parents often feel so confused that they find it difficult to turn to this invaluable family experience.

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Every person sometimes has to face events which can scald his heart. Such wounds can be really deep and painful. All of them need to be healed, but the process of healing requires time. Sometimes more time, sometimes less. But, anyway, time provides the opportunity to sort things out, talk to other parents and specialists, find the necessary information and think it over. And also, the everyday experience of communicating with the child can bring some changes for better understanding. Then the parents feel like sharing their new experience, thoughts and knowledge with others. Everyone needs the opportunity to share the good and the bad with someone. It’s difficult to be alone not only when you’re sad, but also when you’re happy!

When it comes to some really serious emotional stress, you can find it especially hard not only to go through it alone, but also to share your feelings with others. When we experience difficult times, we often think that it will be also too hard for others and that they can get frightened, just wave aside and run away, or maybe even worse – that they can “catch” our worries and start suffering so strongly that we, in turn, will have to console him.

As for joy… We need to share it too. There are good grounds for a well-known saying “to share your joy”. Perhaps, we feel the need to share it because of our generosity and altruism or maybe it is so because even joy can be a burden – although it is a very pleasant one. And it’s hard to carry any burden when you are alone. We need someone to confirm: “Yes, this is real joy and I am sharing it with you. In other words – I am feeling this joy together with you”. Our baby is joy himself and we really need others to like him. It’s important for us to know that other people also see him as sweet, funny and wonderful as we do.

Sometimes parents are frightened by their conflicting feelings towards their own child: they can be angry at him and at the same time feel pity towards him. Such fusion of feelings brings to life sense of guilt and irritation. And this is quite a common state of mind. You can tell your baby: “I’m not feeling very well now, but it will be all right, I know that”. He may not understand what these words mean. But the tone of his mother’s voice will tell him everything. “It hurts, but I am here with you, I see you, I really feel for you”. If the mother is not frightened and doesn’t repulse her grievous emotions, she feels more confident and sure that giving birth to an unusual kid doesn’t make her a bad mother and doesn’t require total self-denial.

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Self-denial and self-sacrifice There is a common idea that having a child with Down syndrome requires parents’ selfdenial. You can often hear such phrases as “It’s a cross to bear till the end of your life” or “You have to devote all your life to bringing such child up”. When you hear these words you can’t help feeling despair and anticipating something like impending doom. Indeed, when you try to imagine that you will have to change your life completely and forget about your own wishes, it’s easy to get frightened. But the truth is that no child (even if it is a child with Down syndrome) needs his parents to sacrifice themselves for him!

As a rule sacrifices are made in exchange for something. In this case it will be exchange for the life of the child. We can say that there is some implication like this: “I am not living my life, I am living yours”. And meanwhile, any child needs as much care as it is necessary for him – nothing more nor less. During different periods of physical, emotional and social development kids just can’t do without their parents’ support and they must get it. So to speak, parents should be near their children, but not replace them or do everything instead of them. Children with Down syndrome are no exception. You shouldn’t do for them what they can do themselves despite the fact that they will do it slower and with less skill, but – themselves. One of the mothers once said: “When I see my child do everything so diligently and persevere, I feel respect for him”. We would add for ourselves that it can be not just respect, but also pride, happiness and trust.

How to tell your family, friends and colleagues about the diagnosis of your child Parents often ask how to tell their family, friends and colleagues about the diagnosis of their child. Every parent has his own reasons to worry. Some people retreat into themselves. They are afraid that after they tell others the news, the attitude towards them will change. Of course, these parents will have to make up their minds how and who they will tell about the diagnosis, but knowing the stories of other families and talking to a psychologist will help them sort their feelings and other things out. Parents have the right to share or not to share this information, but it is possible to understand the attitude of family and friends as well as to influence this attitude only after you’ve told them the news. Otherwise it is easy to become victims of your own fantasies like “what will others think of me and my child”.

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During one of the group sessions in our centre a mother of a 2-year-old child asked others: “Did you tell anyone about the diagnosis given to your child?” and started crying.

“Yes, - one of the other mothers answered, - we told everyone and, you know, surprisingly, many people supported us, even those who we didn’t expect to”. “We didn’t hide the news either”, - chorused another family. Another couple said: “We decided not to tell anyone”.

It is noteworthy that parents didn’t argue who was right, but listened to each other with interest. This helped the mother who had asked the question correlate her opinion with the experience of other families.

Having such conversations with different parents gives you an opportunity to discuss a lot of various questions and getting the experience of hearing and telling different stories as well as exchanging opinions can help you gain more confidence. Many parents noted that having talked to other families, they felt more comfortable and calm in public places like playgrounds. More than that, some parents noticed that they feel more competent and confident than they used to before their baby with Down syndrome was born.

Parental competence Each of us can hardly remember learning to walk. Looking at children now, we can just suppose that we might have acted with the same carefulness, groaned from time to time and fell down, that we might have been also as movingly awkward, hard-working and persistent as them. When our first baby is born, we have to learn to make first steps in being parents. It is only when we play house that we know what to do. In real life we have to learn the art of being parents to a baby, a toddler, a schoolboy or a schoolgirl, a teenager every day… When an “unusual” baby is born, it takes time to tell what is “usual” or “unusual” about him. It is only after some time that we can understand what we can use of our own family experience and what we – parents of a both “usual” and “unusual” child – should learn additionally.

And still it hurts All of us know the phrase “time is a great healer”. And we all have had opportunities to see for ourselves that it is true. But still it is difficult to imagine that such personal experience can help someone who has to accept that his child has Down syndrome.

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Here is a story of a mother who has a 3-year-old daughter: “I was crying for six months and I just couldn’t understand why my daughter was given this terrible diagnosis! And how she, such a good girl, my dear daughter, is going to live with it. But Anya herself started changing everything. She started changing the attitude of others towards her. First, she disproved the predictions concerning her development. She recognized us, smiled and laughed. She communicated with others. She built relationships. Although she was friendly to everyone, she could tell the difference between family and strangers. And she did care who will give her an enema at hospital when it was necessary. She resented and protested. I saw her learning various things and thought: how could it be, how can they call her uneducable? I taught her some things, repeating it over and over, and with time she started doing it. At the same time, while growing up she surprised me: she understood so much, demonstrated gumption, sagacity, imagination and independence. For example, when I prohibited her from pushing buttons on the TV set, she took a doll and started doing it with the doll’s hand. “What a cunning little girl!” – I thought with joy. I got happy when I saw what children with Down syndrome were like and what different personalities they had.

My daughter could defend herself when someone offended her. All in all, I understood that I can trust her”.

Dialogue Interacting and communicating with our child (which is keeping your dialogue running) is a way to know and understand him better. Only such communication can help us build strong and healthy relationship with the baby. The experience of having healthy relationship in early childhood not only widens the range of opportunities for a child, but also helps him develop trust towards himself and the world. He will keep this kind of knowledge during all his life: “The world is happy to have me and I know what to love the world for. I can be seen – it means that I know what to live for. I can be heard – it means I know what to speak for. I can be understood – I want to communicate”.

Now let’s talk about how to communicate with your child.

A baby starts living inside his mother’s body since impregnation. After being born he starts living in his parents’ arms. First he is weak and needs special care of your parental love. He has a natural need to be together with you, to be understood and taken seriously.

From the first days of his life he needs to communicate with you, he needs your support.

It seems like he is looking for his own reflection in you: if you look at your baby, he, in his turn, will be peering at your face. He doesn’t know anything about himself yet.

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But when a happy mother is looking at him, he really enjoys her gaze. Just try to remember how attractive we feel ourselves when the people who love us look at us and what despair, anger and shame we feel when you don’t have the honor of getting their friendly look. When a baby is constantly left deprived any attention, he starts doubting his own existence. Of course, he will grow up and get to know a lot about himself, but if he got the needed attention in childhood, he will have this first experience of knowing that he DOES exist and this experience can never be taken away from him. And, as any other experience gained during his life, this one will stay with him for years to come. We do not use the phrase “Down syndrome” here. Isn’t it the kind of emotional experience that any child gets, including the ones with Down syndrome? Won’t anyone rely on this experience during all their lives?

Positive emotions, which the mother brings to her child, paint his existence with cheerful colors. But, of course, no mother can stay in good mood all the time. She is just a human and it is natural for her to be sad or happy, anxious or angry. And the baby as well has the right to be different which means to be alive. It is us who unwillingly give him the example of showing various feelings.

Any baby has an innate striving for living and growing up. Sometimes the joy of motherhood is alloyed by understanding that a mother should take total responsibility for life and development of her child. In this case a baby becomes something like “clay in the hands of a potter”. Sometimes mothers start trying to “shape” their child and get overburdened with feeling responsible for the result of this “shaping”. Such responsibility is very pressing and it prevents the mother from hearing and feeling her child. If you get

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to understand and feel that your baby is a unique, wonderful, complex and delicate selfdeveloping system, you will be able to watch him developing with sincere interest, create all the necessary conditions for him and meeting his needs. Perhaps, you’ve already got some advice from doctors and relatives. Now it’s time to trust your own common sense.

As you have to go through various trials, you’ll understand clearly what your child really needs. The most important thing is to start seeing your baby as an individual. No-one of those people who’ve given you advice, know your child as well as you, such a caring mother, do.

Feeding your baby The most impressing kind of communication with your child is feeding – periods of time when he is most excited. It’s pretty difficult for a little person to cope with feelings which arise in him in these moments. You might know your child’s two states well: when he is satisfied and more or less calm and when he jerks his arms and legs excitedly, cries or snivels. At first any baby usually sleeps a lot, but some of them almost never get satisfied and can cry quite long even after being fed, have difficulties with falling asleep and constantly wake up. It’s difficult to make a warm dialogue with such a baby, but you should try to! Perhaps you’ll be able to succeed while bathing your child.

Start talking to your baby from the first days of his life, he really needs this! If your baby is crying and you say tenderly and compassionately: “My poor honey, you feel bad!

You are so upset!” or find some other proper words which actually reflect his state, he will stop feeling so miserable. Try to feel and accept your child both in calm and excited state because he needs your help to learn to go through the frightening experience of awakening and cope with attacks of hunger. No baby has a schedule for getting hungry every three hours - on the contrary, all newborns, including humans, expect to be fed at once when they feel hunger. At first you can feed your baby without any schedule, just when he needs it, until the routine which is convenient both for him and for you gets set.

Every mother knows when her child is hungry and even if she decides to feed him later, it will be better if she lets him know that she understands his need.

A baby sees hunger as an intense threat, as something that can take control over him. When his mother prepares to feed him, she starts moving and speaking in a certain manner and the baby understands that soon he will be able to satisfy his hunger. At this moment his salivation intensifies, he gets excited and starts making sucking movements. When you feed your baby, his physiological aspiration to get fed is satisfied

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and he experiences the strongest sensual joy of those which a little baby can experience.

Everybody knows that there is nothing more valuable for a small child than his mother’s milk. If you have to feed your baby from a bottle, it is necessary to keep the particular qualities of breastfeeding as much as possible: while breastfeeding the mother, who has felt that her child started to suck actively, can relax and enjoy the incomparable pleasure of emotional intimacy with her child. It’s important to keep the breastfeeding posture while feeding artificially, which means to sit comfortably, take your baby in your arms as if you are breastfeeding him, put his belly close to you and look at him, maintaining the contact while you keep his body and head elevated. Such moments are one of the most wonderful experiences for the mother and the baby, and if the mother feels calm and relaxed, the baby usually digests food well and there are no complications. But, of course, this happens not always, and if the mother feels strained, the baby feels the same way. He starts worrying, sniveling, crying and turning away from the breast or the bottle.

So in this case you will need to be really patient so that the child could get fed. Maybe you should think of breastfeeding or using the bottle more often or creating a quieter place for both the mother and the child. Sometimes your baby can eructate air after sucking. It is normal and you will just have to help him learn to do it.

From his first days the baby really values his mother’s presence, and when she demonstrates the pleasure, which she feels when she does something for him, it’s easier for him to understand that it’s not just a process of feeding but a situation when another human being is taking care of him. Any baby has a strong connection with his mother and any mother is able to “walk in her baby’s shoes” and thus understand exactly what he feels. No advice can help you learn what a mother can feel to her child but it is this sensation that lets her experience the wonder of maternity, enriches her and helps her adjust to the interest of the child.

Should you take your baby in your arms?

There is a theory of bringing children up which is supported by some pediatricians and which claims that you shouldn’t instill in your baby such “bad habits” as getting rocked to sleep in your arms or being carried in a sling. At the same time, a lot of research shows that babies really need to be taken in their parents’ arms. You might agree that it is important for a baby to feel absolutely safe, but he can feel this way only if his mother is really near him. You should never leave your child crying alone appealing to the fact that he has colic and it will soon be over. Of course, it’s better to be crying than to be suffering silently! But we still hope that you don’t leave your baby alone when he is crying and that

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you understand how important it is for him to hear the voice of someone dear to him and to know that someone understands him in such difficult times. You speak to him quietly and tenderly, you carry your baby in your arms, you don’t say loudly and harshly: “Will you shut up at last?” Perhaps the baby will get quiet if you shout at him, but he will feel even more anxious and not be able to express it having to obey his mother’s wish and order. You should feel for your baby: crying is the only way for him to show his emotions and to share them.

Why do babies cry?

Many babies often cry and every time the mother has to make a decision whether to console her child, to feed him or just to wait till he gets silent himself. Or maybe there is some threat of danger or he needs some urgent help?

In fact, crying is a chance for a baby to tell those who take care of him about his feelings. He doesn’t have any thoughts yet, but he has a lot of emotions – some of them are good, others are negative. He can’t use words yet, but he has a body and a voice. These are his means of communication. Facial expression, gestures and… crying.

So, when a baby is crying it means that either it hurts somewhere or maybe he is trying to show indignation, anger or misery. Besides, crying can be an attempt to “get a lungful of fresh air” and just give a good loud cry. The latter is more of a cry of satisfaction: the baby seems to be surprised by the resources of his own body and he feels like shouting out loud: “Wow, how gorgeous it is!”

Pain. Each of us can identify a child’s cry of pain which is an ability given to him by nature to tell others that he needs their help urgently. When an infant feels pain, he makes harsh penetrating sounds, and if you look at him attentively enough, you will notice that he is trying to show you what is actually going on using various ways. For example, if he has a stomach-ache, he puts his legs up and presses them to his belly, if his ear hurts, he starts picking at it, if he doesn’t like the bright light, he turns his head away from it. But he doesn’t know what to do if the sounds around are too loud.

Hunger for a baby is another source of pain. Having grown up we can’t remember this kind of pain, which we experienced long ago, in our early days. Mothers usually like it when babies eat willingly, when they get excited feeling the smell and sounds which designate the coming of food. We all know that a hungry baby cries loudly when he needs to be fed. He gets excited when hungry and that’s when he feels this “pain of hunger” showing it by crying. If he gets satisfied, he soon forgets this pain. There is also another kind of a cry

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of pain which is sometimes called “a cry of foreboding” and this cry means that the baby has learnt something already. Now he knows that he might get some certain experience in certain circumstances. For example, he knows that when you start undressing him, he will no longer stay in this pleasant warmth, that his position will soon change which means that for some time he might be unsafe. That’s why the baby may start crying just after you’ve undone the first button on his shirt. Also, babies often cry having dirtied their diapers.

Crying here means that not only he doesn’t like being dirty but that he is also afraid that you will interfere in his warm and comfortable personal space. He knows now from his experience that he is going to lose his safety and comfort, that he is going to be turned over and undressed, that he is going to experience some discomfort. It is because of the pain the baby experienced long ago that he may cry of fear: in this case he is frightened that some painful feeling which he felt in the past will come again. If the baby is crying of fear, it means that something reminded him of the pain he experienced in the past.

Anger. No matter how much you try to do your best, the baby will be disappointed from time to time and in such cases he will cry of anger. This cry of anger means that baby hasn’t lost his trust in you and that he demands something he wants to get from you! Children who lost their trust in parents don’t get angry, they just “stop wanting anything” or start sniveling quietly and miserably or hit their head against the pillow or the bed, even against the floor or try to find some other way to use their body to console themselves. It is good for kids to feel a full-scale anger. No baby will look helpless being angry: they shout, jostle with their legs and arms, jump up and start shaking their bed. He can bite, spit, sometimes even vomit, he can screech, lie on the floor and hit it with his legs and arms or hold his breath and throw a tantrum. During these several minutes of anger your child is really determined to break and destroy everything and everybody and he doesn’t care anymore if he can accidentally destroy himself too. But, at the same time, when a baby is crying in anger and people around him stay calm and unhurt, he gets an opportunity to understand that the emotion that seized him doesn’t correlate with reality, that his fantasy and facts, although equally important, differ from each other. Remember that a child seized with anger is an individual! He knows what he wants and he is trying to get it! Sooner or later, having got some personal impressions of his emotional experience of pain and anger, the baby will know and understand that other people can also feel pain and anger. If you watch your child, you will find out lots of interesting things, in particular his new knowledge that he can hurt you and that he is determined to do so. Try to understand it and to rely on your self-control and friendliness, help your child to overcome the attacks of this anger: this is a part of his unique personality and relations with the world.

Misery. There Is no need to describe feelings of misery and sadness, everyone is familiar with these emotions. Feelings of a baby are sincere, certain, simple and intense. When we grow up, we learn to protect ourselves from such intensity and power of emotions.

Adults, unlike babies, are not open to going through grief at any time of night or day. Some people have learnt to protect themselves from grieving, which, of course, could really hurt

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them, so well that they find themselves unable to stand any strong and deep feelings. Such people can’t even take a chance on loving someone. They lose a lot not taking this chance, but, at the same time, they are safeguarded against misery which they might experience if something happens to the person they love. Sad movies make them cry which means that they didn’t lose the ability to grieve. Adults can’t remember afflictions of their infancy.

What is more, it’s not easy for them to believe that they also experienced the same feelings and to behave compassionately with a grieving child.

Let us try to understand the meaning of “crying of grief” and talk about what to do if you happen to hear it. When a baby starts crying because he feels sad, it means that his emotions are becoming more definite. Demonstrating sadness is as natural as demonstrating anger and it is unlikely that you will be able to stop such cry of sadness. You shouldn’t try to prevent your baby from being sad just as you shouldn’t try to prevent him from being angry. But you should understand that while anger is a reaction to irritation, sadness reflexes more complex processes in the mind of a child. Grieving shows emotional development of a baby, the appearing of more delicate and acute feelings, and it is good if the mother understands the meaning of such emotions for her child. Every parent is happy when their growing kid says “thank you” and “sorry”, but you shouldn’t forget that your baby’s “cry of sadness” is the early version of the most sincere gratefulness and repentance.

You should take your grieving child in your arms and hug him sharing his feeling. But what you definitely shouldn’t do is try to cheer your baby up, throwing him up, tickling him and trying to distract him from his grief. Your baby need time to go through his sadness, to get over it, but he needs to know and feel that you still love him.

If you compare the cry of sadness with other kinds of cry, we can say that the cry of hunger and pain usually appears from the baby’s first minutes of life, the cry of anger appears when the baby gains life experience, the cry of fear shows the anticipation of pain and means that the child started having some ideas and the cry of sadness signals that the baby now has more complicated emotions. You shouldn’t try to organize your life in such a way that doesn’t give the baby any reasons to cry. It’s better to know the possible reasons and help him overcome these hard moments.

There is one more type of crying: a cry of hopelessness and despair. A baby that has no hope cries this way. You can hear such cry of despair and collapse in special institutions where babies have to live without their mothers. We wish you to never hear such hopeless cry, but if you do, you should know that it is an alarming sign which means that the situation is no longer under control and you need help of a specialist.

The mere fact that you are going to devote yourself to taking care of your baby means that he is really lucky! If your relationship is stable (and predictable for your baby), he can develop successfully and use crying to tell you that he is hungry, angry, anxious or scared, when he wants to be left alone or when he is sad. Stay close to him, try to understand what exactly your child is trying to tell you and feel for him!

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The role of a father There are a lot of reasons that can prevent a father from taking active part in bringing his baby up. He is at work most of the time when his child is awake and when he comes home, the baby is already sleeping. It is also often easier for a mother to put him to bed before the father comes home to have some time for making dinner or doing other housework.

But, at the same time, many of you will agree that taking care of the child together every day (even if it is some small things which others may consider insignificant) is very important both for parents and for the baby because it will help maintain positive relations between a husband and a wife. When the baby is growing up, these “small” things become even more important making the connection between the parents even stronger. Some fathers feel a bit uneasy with babies, sometimes it is even difficult to make them interested in playing with their own child.

It is necessary to have a father in the family because he will make the mother feel well and be happy. Any baby is very sensitive to the relations of his parents and, if all goes well, he will be the first to appreciate it. It is easier to get on with the child if he feels what can be called “safety”. Besides, the father can support the mother psychologically: he sort of confirms the mother’s power being a person who embodies the law and order that the mother brings into the child’s life.

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Every woman sometimes has to demonstrate authoritativeness and if she has to bring not only love in the life of a child, but also some elements of strictness and power, the burden she carries becomes really heavy! It’s important to have the opportunity to share this burden with the father. And finally, every baby needs a father because he possesses of various positive qualities and those individual particular features and habits which distinguish him from other people familiar to the child. If the father is near and if he wants to know his baby better, the latter feels happy. When children create their ideal, they mainly base on what they see in their father or on their idea of him. Children like to play house and in these games the father usually goes to work in the morning while the mother does some housework and looks after kids. It’s easy for them to understand what housework is like because they can constantly witness it and take part in it. But the work of their father, not to mention his interests and hobbies, often remains a mystery for them. So, if the father joins his child in his games sometimes, he can add some new very valuable elements which can significantly broaden the baby’s idea of the world.

One of the main roles of being a father is, using his openness and naturalness, to set the example for the baby so that he could adequately perceive other people.

Any family is a living and complicated organism, so the mother should help the baby and the father understand each other. And although no mother can make their relationship really close, she can organize the family life in such a way that could provide an opportunity for the father to develop this relationship himself.

When daddy is not at home Sometimes the father can be away from home for several days or even weeks. And if the baby doesn’t accept him, he can feel annoyed. Parents should know and remember that the way time goes for a baby differs from how adults perceive it: 2 or 3 days pass as slowly for him as 2 or 3 weeks pass for us. That’s why, when the father is away for several days, it feels like a very long time for a child. In such cases the father should let his child know that he is going to leave for some time and the mother should talk about daddy more often and explain that he is at work, but that he still thinks of his baby and will soon come back home.

If the little person meets his father frostily and timidly, don’t be vexed to no purpose.

Give your child some time to get used to the situation and to realize what’s going on.

When you meet your child after some time of parting, don’t rush to hug him at once – children under three years old can simply get scared. Be patient for a while and soon the baby will reach for you himself.

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He may demonstrate his love in a bit unusual way: not hugging or kissing his dad, but looking at him with interest, bringing him his toys, climbing on his lap or maybe he will need some more time to hide behind his mother shyly trying to remember who it is standing in front of him.

Jealousy The birth of a new baby can be quite dramatic for the elder children in the family because this coming of a new boy or girl can arouse a fusion of feelings. Let’s talk about one of these feelings which is jealousy. Here we must note that if a child doesn’t show signs of jealousy at the age of eighteen months to four years, the parents should get alarmed. The elder child will feel quite natural jealousy towards the younger one because for the first time in his life he sees his parents admire not only him, but someone else, and, more than that, someone who is smaller. Does it mean that you have to be small if you want to be loved?

But everybody was so happy to see him grow up, become bigger… From the point of view of the elder child, something strange is going on, something that doesn’t correlate with the idea that it is better to be big than small, the idea that has already formed in his mind.

Everyone is getting ready to meet the new baby and the parents often tell their elder child: “This new little brother (or sister) is for you”. So, the child expects to have someone of the same age to play games together. The mother sometimes shows him pictures of him when he was a baby and says: “Look, what a nice little baby you were. He will also be this small”.

And the child answers: “I don’t want to have such a small one!” Please remember that when your child says that he doesn’t love his brother or sister, he doesn’t oppose himself to you and he doesn’t want to make you angry. He just tries to demonstrate discontent with the fact that a tiny baby is going to be born while he wants to have a partner to play games together. And then the baby is born. How can parents help the elder child who is suffering and feeling jealous? The father can do it the best. It will be really good if he supports the elder child helping him overcome the attacks of jealousy which might happen in rather unusual ways. For example, the elder child may start urinating in bed again, sniveling without any reason and refusing to walk without help or eat the usual food demanding milk instead of varied meals. This means that he is trying to become small again to be the same as his little brother or sister who gets so much attention from his parents. In this case it is the father who should exemplify the advantages of being older (being able to go to bed later, to watch cartoons etc.). He should also spend more time with this child and provide him with opportunities to play with children of his age. It’s important for the elder kids to have their own space and toys inaccessible for the younger ones. If you go on saying: “Give

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your brother/sister this toy, you should always let the smaller ones have what they want”, it will not help make their relationship stronger.

The elder child of four to six years old may hug his younger brother or sister with too much strength and sometimes even bite him or her. How should you react? First of all, don’t be too strict or scold your child too much. Having done what he’s done he might already feel quite guilty! Instead of telling him off, shouting at him, slapping him or prohibiting him to do this, feel for him and tell him: “You see how strong you are and how weak your brother (or sister) is! He is as small as you used to be when you were his (or her) age. He (or she) knows that you are his (or her) elder brother and he (or she) wants to trust you. You do understand that you shouldn’t bite him (or her), don’t you?”

Perhaps, you will have to repeat such conversations several times, but, fortunately, if parents see that such behavior is connected with the anxious state of mind of the child, not with cruelty, if they feel for their child sincerely and help him adjust to the new situation, he will soon stop behaving this way.

Sometimes a different kind of situation can appear in the family: the elder child of five to seven years old may want to appropriate the baby because he thinks that he can treat him better than the mother or the father. Parents should pay more attention to this child because his behavior means that he doesn’t want to communicate and play with children of his age and is trying to take the responsibilities of adults. It’s good that the elder child wants to take part in bringing the baby up and the mother can let him do it, of course, but you shouldn’t make it obligatory for him. Sometimes an elder sister can ask her parents to let her hold the newborn brother or sister in her arms. But besides the sincere wish to hold the baby she may feel fear to drop him accidentally and because of this fear she may involuntarily start holding him or her tighter and tighter while the baby is feeling more and more anxious, uncomfortable and even hurt… It will be much better if the mother doesn’t make her daughter totally responsible for the baby, but stays near the girl, calm and confident, however, ready to take the small child from her blandly at any moment, so that he could feel safe again.

It’s important to understand that brothers and sisters are really rivals in a certain way. They have to compete for

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their parents’ time, attention and care; they have to learn to negotiate competing with each other. But, at the same time, they are companions in distress because neither of them can own his or her parents totally. There are certain aspects of their parents’ life which none of them can access. Children can claim to get only a part of the adults’ time, attention and care. This is what can actually create necessary prerequisites for becoming partners, learning to take care about themselves and about each other. And just as there are certain aspects in the parents’ life that must remain inaccessible for children, brothers and sisters should also have some space for their own relationship where adults are not involved. It is also vital for the family to spend some time together and, what is especially important, each member should have the opportunity to spend some time with others as well as on his or her own.

When your baby has to be taken to hospital There can hardly be found a baby who has never been ill. Sometimes children need to undergo serious treatment or an operation. How can you go through this difficult period not sinking into despair ad anxiety? When preparing for an operation, it is important to remember the psychological aspect of the situation. Of course, parents feel especially worried about their child’s health and the result of the operation at this time. What can you do? Should you hide your anxiety and keep it inside? But children are very sensitive.

They may not understand what is going on, but they feel their mother’s tension which she passes to them through her fingertips as a British psychologist Winnicott once said.

If this is true, if your child really is so sensitive, it means that he can feel the growing and lessening of your anxiety. That’s why it is so important for parents to take care of themselves and to make sure that they have someone to share their worries with and to help them overcome their fear. It may be someone of the family’s friends or other parents of children who have already been in the same situation.

There is no doubt that the mere fact that your baby has to undergo an operation can make the parents really anxious and the performance of the operation itself is even more worrying, but knowing that it is necessary to cure your child of his illness and that if you don’t take action on it, his condition will get worse, might help you. How can you help your child get through staying at hospital? The best way is for the mother to stay there with him, but if it’s impossible, make sure that he has his favorite toys with him there.

And remember to take them back home with him to make coming back easier for him

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as readjusting to the usual life can also be quite difficult. When your baby comes back home, it’s important for him to have his “friends” with him – the toys that he had at hospital. When your child is at hospital, you should observe a very important rule: never miss a promised visit - it goes to a child of any age! A crying baby at a hospital is quite common. The parents should pluck up their courage, arm themselves with patience and go through this trial despite the child’s crying. Don’t think that if a baby starts crying when he sees his mother or father, it’s better not to visit him at all. It is a big mistake!

Even if the child cries when he sees his parents or when they go away and he is left at the hospital, it is much better than not visiting him at all because he upsets both of them. If the mother can’t help showing her distress, she should remember that it’s better for her child to see his crying mother than not to see her at all. You can tell your baby how you worry about him and what or who you rely on. Tell him that you also trust in him and in his wish to recover. Every child really strives for life!

Crises. Problems of behavior and disobedience. Parents’ authority Parents are usually familiar with their child’s character and habits. They know what he likes and what he doesn’t, what he prefers doing and what he will never do. They know his taste, his preferences, his temper. They know how to influence his behavior… They know if it’s easy or difficult to come to an understanding with him… They know if he is amenable or obstinate, reserved or outgoing, moody or patient…

While the child is growing up and developing, while he gets to know himself, his wishes, his abilities and the world around him better and better, he feels the growing need for independence. The habitual style of relations between the baby and his parents starts conflicting with his need for independence and soon there comes the time which psychologists usually call the awkward age. In such crisis periods, when the baby turns one, two, three years old, his behavior obviously changes. The most dramatic crises happen when the child turns three years old and when he becomes a teenager. He can start being afraid of something that didn’t use to scare him, become unpredictable, moody, stubborn, he may start “being annoying” or “greedy”. Such changes are caused by the fact that the child is growing up and wants to live the way he wishes to. It’s not bad at all, these changes mean that the child understands his wishes and shows persistency in defending his interests.

Changes in the child’s behavior mean that it will be impossible to keep your relationship good without the needed readjusting. It turns out that “the power” should

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give “the people” more freedom. Here parents naturally start worrying: what if “the people”, having partaken of freedom, will stop recognizing “the power” at all? You should remember that children never actually want unlimited freedom. “The people” will be quite contented with “the power” which is considerate enough towards their needs, reasonable, self-confident and able to guarantee safety. So how can “the power” maintain its authority and not infringe upon “the people’s” (which is the child’s) freedom?

Respect and consideration towards the personality of the child and towards his wishes can significantly lessen the acuteness of negative situations. But it doesn’t mean that your child doesn’t need any restrictions. Quite the opposite – they are necessary!

Parents should remain the authority, but not the one which practices abuse, slaps sanctions, punishes or pardons “the people” depending on their mood, but the kind of authority that is ready to respect interests and needs of the child but demonstrates firmness in the cases where it is necessary. For example, it’s the child’s business whether he wants something or not. But it is parent’s duty to decide when to go to bed because they take into account biorhythm of the child and the nuances of the everyday routine.

The demands that you present should be as constant and predictable as possible and the censure and the punishment (which are the consequences of breaking the rules) should also be unalterable, predictable and… boring. It should be as boring as a ticket collector who will inevitably come into the bus, ask for the ticket and, if you don’t have any, fine you. If this ticket collector comes regularly and consistently, even the most persistent fare dodgers will get into the way of buying a ticket. But still they will always have two options – whether to buy a ticket or to pay the fine. The rule says that you must pay for going by bus and it turns out that it is less troublesome or costly (and as a result – more convenient) to buy a ticket. The baby will also feel more confident and safe if you teach him to follow the rules. Of course, you can’t set the same rules for years to come. He grows up, develops, his needs change, psychological and social tasks, which he has to deal with being a growing up person, also change. But it’s hard to disagree that, anyway, it’s very important for a child to get an experience of following the rules.

Any person accustomed to following certain rules will try to understand the customs when he gets in an unusual situation, to find out what is legal and what is illegal, how to behave in order to feel comfortable. Every child should learn to behave himself, but it is worth it because being adequate will make social and personal communication easier for him. Children never get born having the knowledge of how to behave in appropriate and socially acceptable way. The so-called behavioral skills develop gradually, and you can help your child with this if your requirements are clear, adequate and constant. And the censure for the broken rules will surely not be humiliating.

Here we have some videos provided to us by one of the families. These videos are about a girl with Down syndrome called Julia. She is six years old and she lives in a small resort village not far from Tuapse.

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Today Julia is staying at home with her 26-year old sister Masha, who has to make sure that she doesn’t catch a cold, doesn’t make a nuisance of herself and occupies herself with some useful activities.

Julia takes her T-shirt off (she must be hot), takes the floor-cloth and a bucket of water and heads to wash the stairs.

Her elder sister Masha tells her: “Julia, put your T-shirt on or you’ll catch a cold”.

But Julia ignores her words. Masha (still sitting): “Julia, put your T-shirt on and don’t splash the water! It’s cold already!” Julia keeps romping with the water and doesn’t put her T-shirt on. : “Julia! I am talking to you!

Put your T-shirt on and leave the bucket alone! Hey, who am I talking to now??” Julia doesn’t respond and keeps romping with the bucket and the floor-cloth. The day is drawing to a close. Masha stands up anxiously and tries to put the T-shirt on her sister. Julia resists. Masha exclaims in a plaintive and confused voice: “Come on, Julia, you’re going to catch a cold!” Next we watch Masha ask and beg Julia plaintively to do this or not to do that while Julia doesn’t listen to her at all and does what she feels like to.

There is one more video about this girl.

Masha and Julia have returned from a walk.

Julia’s room is equipped as a playroom. Julia comes up to the table, takes a tube of glue and tries to press it out right on the table.

Masha stops her sister: “You mustn’t do this!”

Julia looks at Masha and continues pressing the glue out on the table. Masha approaches Julia, says confidently and strongly: “I told you, you mustn’t do this!”- and takes the tube away from Julia. Julia starts sniveling, then she cries and demands of her sister to give the glue back to her.

Masha says firmly: “I told you”.

Julia is still crying resentfully.

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In a couple of minutes Masha calls Julia up, seats her on her lap and tells her: “Do you know why I didn’t let you take the glue? Because you were damaging the table” – there is a lot of compassion and warmth in Masha’s voice. She goes on: “All right, next time if you don’t spoil the table, I will give you the glue. Well, how about some drawing?” Julia agrees: “Drawing!” The sisters sit at the table and start drawing.

Don’t you find these scenes pretty familiar and expressive? It’s amazing how differently the same grown-up person behaves in the two situations. In the first scene – about the T-shirt and the bucket – Masha begs and exhorts Julia, but she doesn’t confirm her words with actions. For example, she could take the bucket and the floorcloth away from Julia after warning her. Or was it some kind of advice or request, not a demand? Well, if it was a request, Julia had the right not to fulfill it. Masha didn’t insist either, she seemed not sure herself whether Julia really had to put her T-shirt on and stop romping with the water. Masha gets more and more worried, but it’s not clear why exactly: either because Julia is in danger or because her sister ignores her words and doesn’t respond. It is Julia who behaves as the strongest in this situation because it is her who decides what to put on and what to romp with. As to Masha, she is not sure that it is her who makes decisions although she is the elder sister and should look after the younger one.

Here we have another question: how can Julia get used to following the directions of adults?

The second situation with the glue develops in an absolutely different way. Masha needed quite little time and few words to explain clearly and accurately to Julia: 1)

what exactly she mustn’t do

2)

why she mustn’t do this

3)

that Julia mustn’t spread the glue on the table under any circumstances

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that Julia will get the glue if she spreads it on paper, not on the table

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that Masha feels for Julia, but she isn’t going to change her decision

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that Julia’s behavior didn’t make her “a bad girl” and her sister is happy to collaborate with her (to draw together, for example).

We can clearly see in this video that Masha is absolutely sure that she is right and it turned out that she is quite competent in communicating with her sister. It will be easy for any child to learn under such circumstances that he or she has to obey the rules set by adults.

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Communicating with peers When you watch babies look at each other with great interest and make some attempts to communicate, you can understand that this is children’s natural need. By the age of three every child understands that there is a kind of triangle which consists of his mother, his father and him and he also clearly sees that his parents make a pair. But what about him? The interest to other children, the opportunity to communicate with them on a playground, at a day centre or a nursery will help your child feel that he also belongs to a group of children and lessen his worries about being sort of excluded from the company of adults. He can share his interests with other children and they can find some activities in which they can take part together, isn’t that awesome? Any child gains the experience of communicating gradually, not at once. The patience and calm friendliness of an adult will help his child with Down syndrome get this important experience.

You can begin this process with the situations in which you feel confident enough yourself. You shouldn’t come to any conclusions too quickly while watching the baby cope with building new relationships. He is learning. He will definitely accustom himself to it with time. Permanence, tolerance, attention to feelings and worries of the child, trust in him from the confident and calm adult – all this will really help and all this is necessary for the baby to get included in social life from the early days because society is the kind of environment which can teach and cure, just like the family. We can only add here that a kindergarten is the best social environment for a child of 3 to 7 years old.

Kindergarten Perhaps you’ve already noticed that children with Down syndrome appear in kindergartens and other children’s groups more often nowadays. In the past they used to stay at home or at specialized institutions while their “usual” peers attended kindergartens. Such unfair isolation of these kids from the full-fledged social environment, which is so important for any child to grow up in, aroused a lot of undesirable consequences. Children didn’t have the opportunity to get the important experience of social life, they suffered from lack of communication with their peers, they didn’t have any opportunity to adjust to living in a society because it requires everyday practice. It used to be more difficult for them to become independent and mature. It’s not easy to grow up when you’re surrounded with adults who consider you to be small and helpless forever. Meanwhile the rare cases of children with Down syndrome growing up in a usual social environment demonstrated

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the wide range of abilities of such kids, their success in adjusting to this environment and finding their place in a group of children. Every new beginning usually causes some worries and anxiety. When an “unusual” child comes to a kindergarten for the first time, any tutor can start worrying: “Do I have enough experience to work with such a child?”

Parents of the “usual” kids also worry: what if meeting new children will harm their baby? What if it prevents his normal development? Parents of the “unusual” kid worry too: what if their child gets hurt? Will he be able to deal with everyday tasks without his parents’ care? Will he feel comfortable? Adults often tend to see their children as very fragile and vulnerable! Nowadays kindergartens and nurseries start accepting kids with special needs in children’s groups more often although they have to overcome anxiety and organizational complications. Actually, such experience becomes more and more common in various areas.

On the one hand, parents of a child with Down syndrome can worry about how to place him in a kindergarten. On the other hand, they worry if their child will feel comfortable there. The second is the most important. Try to learn as much as you can about the nursery where you want to place your child. Ask yourself too: “Being a parent, what do I want for my child? Which of my wishes will this nursery fulfill and which – not?” It will help you avoid disappointment and misunderstanding.

When your child goes out into the world for the first time Besides worrying of how their child will manage to cope with the difficulties which he can meet at the kindergarten without his parents’ support, families often have other fears too. After all, their sweet “unusual” child is going out in a big world. How will this world meet him? Will he be accepted?

Of course, a child with special needs may lack some skills. For example, his speech can be not quite clear yet, it can be difficult for him to communicate with others or move…

But lack of some skills doesn’t mean that your baby will not be able to develop them! He will strive to adjust to the usual children’s environment he gets in. Unusual kids often tend to be assiduous and hard-working because everything they achieve doesn’t come easily.

Their “usual” peers may ask: “Why is he like that?” Such questions are natural for children and you should treat them with respect. It’s necessary to specify what exactly the asking kid means and to explain in a simple and clear way that all people are different. Showing respect towards children’s curiosity will help him feel friendlier to your baby.

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Let’s return to our Julia. She attends a mainstream kindergarten which is the only one for several small villages of this kind. We have a video of a typical morning in this kindergarten. We have a great opportunity to see an average day that Julia spends among her peers. During breakfast she eats slower than some of the kids, but faster and with more care than many of them. She even came up to a boy who was left with his porridge alone when everyone had already finished and helped him to spread butter on a piece of bread, just like an attentive elder sister.

Now children are preparing to go for a walk.

The teacher shows them how to fold their clothes: “How do we fold our T-shirts? Look, Julia is the quickest! Put the sleeves together!” Having folded her T-shirt, Julia helps a less adroit boy again. Julia is a daughter of the owners of a small hotel, so she likes and is able to fold clothes and put things in order neatly as she is used to help her parents do this at home.

The next video shows us an active game. Children should run in circles to music and when the music stops, they must rush to the chairs and occupy them. There is one chair less than the number of the children playing. Julia runs slower than others. Children root for her, cheer her up, shout: “Julia! Julia!” And Julia doesn’t give up: she makes it almost to the game’s final round.

The next activity is a speech lesson. The teacher reads a book and everyone, including Julia, listens. Then the teacher asks the children questions about what she has just read. She also asks Julia some questions. She answers one of them herself and the other one using the children’s prompting.

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The next video shows us the nature lesson. Children study seasons and months. The teacher asks Julia about summer. The girl hesitates with the answer and a quicker boy answers for her. The teacher says to him: “I was speaking to Julia. Are you Julia?” By this time Julia has already made use of the prompting and repeated the right answer.

From time to time Julia seems to get a bid bored, so she tries to tease the boy sitting next to her. The boy waves away: “Don’t disturb me!” and Julia stops pulling him by his sleeve.

For a while she just sits staring on the floor, but soon involves in the work of the group again.

We can assume that other children behave the same way, but the camera shows us only Julia. The teacher doesn’t reprove kids, she is sure that they will deal with such small difficulties themselves.

Now it’s time for another walk. Children will play on the ground freely: so they take various toys and bunch in pairs and groups. Julia is now together with three other girls. They choose some “girly” toys for their game: dresses for princesses, dolls, furniture, crockery.

Like other girls, Julia dresses as a princess. She says: “I am a bride!” Then she puts her doll to bed. She is trying to make her bed comfortable, puts a pillow and a blanket very carefully there. She repeats it several times and then joins the girls who are doing their hair…

This is a usual day in a mainstream kindergarten where “usual” kids and “unusual” Julia get involved in common children’s activities.

Here is a fragment of an interview with this kindergarten’s headmaster: “… Julia is a very sociable, outgoing girl. She is friendly and open. We noticed that other children started copying her in some ways like being sociable or doing things with care”.

It seems that being unique and, at the same time, like others is the most important thing in the life of a group.

Your child needs to play Playing is a very important part of every child’s life. We can say that it is a special kind of activity, a way of life and of learning about the world. Each baby explores, imitates, repeats, trains, learns, gets new experience and uses it again in different circumstances.

Of course, playing is not the only way to develop the necessary skills but it is primary during the first years of the child’s life. The more opportunities to play and to develop his playing the child gets, the more he will be able to use this universal way to solve various tasks life will provide him with.

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Parents shouldn’t think that the time their child spent playing was wasted, that it was some kind of unnecessary pleasure, that he doesn’t develop any skills or learn anything new while playing. Quite the opposite: the child was learning something and his parents helped him and supported his learning.

This goes for any child and for any child with Down syndrome as well, of course. But it’s difficult for a child to develop the game all by himself. If, for instance, he has found himself in physical or emotional isolation and now he is left on his own which means he is lonely; if he is depressed or anxious which means that he is overwhelmed with feelings that doesn’t let him concentrate on playing; if he is worrying about the mood of the adults near him which means that he can’t concentrate on his own interests; if he is angry or offended – he has to care for his own psychological or physical safety. Such things happen when parents are depressed, when they are inconsistent or so absorbed in thoughts of themselves that they just can’t respond to their child’s signals or when they are too anxious which means that they can be fussy and obtrusive. Well, such things do happen! We are all human beings...

However, all things listed above are just temporary difficulties and here we would like to tell you of a way to play which can help an adult become the best partner for a playing child.

Here we offer a short description of a game organized in a way that lets an adult act not as an “expert” who asks questions and assesses what the child is doing, not as a leader who, in fact, takes all the initiative from the child, not as a bored indifferent observer, but as an “explorer”. An adult should be interested in the child’s game, he should ask what the child is doing right now, what he is feeling, what he wants to say. An adult – be it a mother or a father – can tell their child about their guesses and assumptions being in this position.

In this case the child sees that his parents are interested in his game, but they don’t interfere, don’t take all the initiative and don’t leave the child alone. During such a game a mother or a father just describe all the child’s actions aloud, but look how much important information they tell him while talking!

Another video will help us to illustrate what we have said. Now we’ll watch 3.5year old Misha play with his mother.

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Misha takes some blocks and puts them one on another.

Mother: I see you’ve taken the red block.

Misha looks at the block, puts it down and then takes the yellow one.

Mother: And this is a yellow one. A yellow block.

Misha puts the yellow block on the red one, then he takes another yellow one and puts it on top.

Mother: It looks like a tower. (Now she is broadening the child’s idea of the opportunities this game offers).

Misha shakes his head no.

Mother: Don’t you agree? Is it something else?

Misha: H… Mother: A house!

Misha nods: H…!

Mother repeats clearly: Yes, a house!

Mother goes on: I wonder, who will live in this house? (Perhaps the boy wasn’t going to make anyone live there, but his mother’s words again broadened his idea of the house: now he knows that someone can live there and that he can choose himself who it will be).

Misha takes a toy rabbit and puts it on top. The rabbit falls down. Misha puts it on top again, but it’s too big for the upper block, so the block also falls down.

Mother: The rabbit is too big.

Misha throws the blocks around. He is angry. He starts sniveling. He leaves.

Mother: That’s a pity…

Misha: Yes… Mother: We still have some time to play.

Misha sits down and hangs his head.

Mother: You are so upset that you don’t even want to play.

Misha stands up and takes a book.

Mother: You can glance it over and we’ll read it in the evening.

So, this was a short fragment of a special therapeutic game for a mother and her child.

The mother doesn’t interfere in the game, she doesn’t criticize or praise the child, but she is very attentive to everything he is doing. She uses the game as the opportunity to give the boy some space for playing so that he could take the initiative, show independence and spontaneous emotions. Guided by his actions, she points his attention to the color and broadens the horizons of the game. She surmises what Misha is trying to say and reconstructs his incomplete words, then says them correctly and he hears it and can conceive it better and repeat it in his mind which is useful for speech development

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(including active speech). It is well-known that children with Down syndrome develop their active vocabulary slower than the passive one. They want to say more than they can.

Each person has something to say, but you should remember that it’s worth speaking only if there is someone to listen to you.

In the example we’ve given you can see a special kind of game and the child was told about it beforehand. Such interaction through playing requires concentration and effort, so it should be limited in time. It’s better to organize it regularly, for example once a week for 20-30 minutes.

It’s also important to play other games with the child: story games, didactic ones, outdoor ones. You don’t have to follow such strict rules in these games. The main thing is that it should bring joy both to the parent and to the child.

Will your child speak?

One of the most painful questions that usually worry parents of children with Down syndrome is whether their child will speak or not. Parents want their child to speak very much and it’s easy to understand both this wish and the anxiety they feel!

Teaching early intervention programs focus especially on speech and communication development of a child starting from the first weeks of his or her life.

Let’s talk a bit about the psychological context of speech development. Everyone understands that speaking is one of the means of communication. Communication therefore is primary and the baby can start using it long before he says his first words.

Any baby claims to become an interlocutor from his very birth! The more you talk to your child, the sooner you will be able to “get him talking”. Remember that having a conversation is not only saying the needed words aloud, but also listening to the person you are talking to, hearing and understanding him.

Intelligence Writing about this issue was the most difficult thing for the authors of this brochure.

Intellectual competence of people with Down syndrome has been evaluated as mental impairment in professional circles as well as in common society at least in our country.

But it’s difficult to talk about it not because we have to confirm this “ruthless truth” once again, but because nobody knows exactly to what degree this really is “truth”.

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Here we would like to recall a story that happened some time ago. A group of children with Down syndrome went to Pushkin museum of fine arts to have another lesson as part of “An unusual child in society’s cultural space” program. It’s important to accustom any person (including people with Down syndrome) to various kinds of art and creative activities.

It is not for nothing that works of art are so valuable for the humankind. They have been nourishing people for centuries satisfying one of their inherent needs. And every person regardless the level of their ability to perceive the beauty, can feel pleasure of listening to music or looking at paintings, sculptures or architecture.

So, the topic of the lesson was “Portrait in painting and sculpture”. The art historian who was teaching this lesson was telling the children about sculptures by Rodin. One of the sculptures was the bust of Victor Hugo. She asked to look at his face very carefully. She pointed the kids’ attention to his look, beard and whiskers. Suddenly Alesha, a 12 yearold boy, said: “But he has no brain”. The art historian ceased talking confusedly and then objected: “How is that? Look, what intense thinking the face of this man expresses!”

It seems that our art historian (a really wonderful one, by the way) felt upset for Victor Hugo and started defending him.

But, as you can notice, Alesha pointed out the difference between the living and the lifeless and emphasized the importance of a brain for a man. Alesha really needed to be understood and to have an answer to his question.

Children with Down syndrome have so many questions which they can’t get answered because others consider them to be mentally impaired! How can their intellect develop if they don’t have anyone to talk to? There are countless demands, directions, monologues, monologues, monologues. But where are any people to speak to? We would like to cite a Spanish actor and the first European teacher with Down syndrome Pablo Pineda: “Parents must talk to their kids because the worst enemy of any child with Down syndrome is silence”.

Every person lives his live with the abilities that were given to him. And we all have quite different abilities. Every person learns how to use what he WAS GIVEN to the maximum. So we should strive to achieve this goal while thinking of how to plan the life of our “unusual” children: to fulfill the potential that every child already HAS. And every one has his own individual potential (it goes both for “usual” and “unusual” people).

Here is a fragment of an interview with the creator of “Unusual child in society’s cultural space” program: “…we plan leisure, playing games and learning for all of us. We visit museums, walk the streets of our native city, listen to music at various concerts, go to see plays and movies, learn about our folk traditions, make food for friends, draw, model and construct, get together at a café for a good cup of tea… We live a life which is interesting both for adults and for kids”.

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School All parents of children with Down syndrome ask themselves whether their child should go to school or not, will it be a mainstream school or a specialized one. This school question is often the first one they ask.

It is true that school is one of the most important places to learn at during childhood.

Firstly, it is a social space where a child spends time without his family. There he has his lessons and his relations with other kids as well as with teachers. Secondly, children develop skills and get knowledge which will be necessary for their future education, including the professional one. And last but not least, school teaches children to follow the rules of social life.

There is no doubt that every child needs school. And it is a pleasure to see that this simple truth is more and more obvious for those who are responsible for creating opportunities for children with special needs to study at school. In the past only specialized schools accepted kids with Down syndrome. The peculiarities of cognitive abilities of such children were taken into account there and they were taught by special teachers according to special curriculum. However, nowadays attention is paid not only to educating children, but also to not letting them get isolated from the social life. That is how inclusive education which lets children with special needs study together with their peers started developing.

This important kind of approach to teaching children is developing in our country too, so now mainstream schools, as well as specialized ones, have started teaching and socializing children with Down syndrome. Now in happens only as single instances. And this is not surprising. There is need for significant refocusing from the common mass approach to education to individualized one.

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Of course, it is not only children with Down syndrome who experience educational difficulties. Other, quite “usual” kids sometimes also have such problems. So, if a school takes responsibility to teach children with various needs, it has to create suitable conditions for that. For example, some lessons are taught in small groups and individualized curriculums are made for each student.

Parents should understand that it doesn’t matter so much what the school their child is going to study at is called: it doesn’t matter whether it is mainstream, specialized or inclusive. What really matters is that the curriculum it offers to your child meets his needs the best (which means giving him knowledge and teaching him skills he will need in his further professional education and providing him with conditions for his personality to develop comfortably enough). You should remember that each child in our country has the right to study.

Pskov. The center of curative pedagogics. We are visiting a class of high-school students of 15-16 years old. The teenagers willingly tell us about what they do at the lessons, what they like doing, what they are proud of. A handsome young man with Down syndrome behaves a bit defiantly, which is, actually, quite common among nihilist teenagers. He winces and tells us that he is in a bad mood today. Perhaps, maybe that is why there is quite a lot of irony in his voice while he is talking to us. But a bit later he starts demonstrating more benevolence and tells us about his achievements with pleasure. He likes maths (he calculates pretty well), sports and cooking. He seems to be rather popular and quite aware of his charm. And, as it usually happens to people of his age, he has already experienced falling in love. And, as it also happens quite usually, he has fallen in love with a young teacher. It seems that having studied for 10 years at this special school, the young man had become an interesting person, independent enough and able to take care of himself physically and emotionally. He is aware of his own preferences and he is quite good at communicating with others. These are just some of his strengths that we learned about during our first meeting.

Sexuality. Sexual education Even parents of very little children often ask questions about sexuality and sexual behavior of a child with Down syndrome. They worry if such person will be able to control his sexual desires and behave properly according to socially approved standards. What will the period of pubescence be like? What if their child will get aggressive and uncontrollable when he becomes a teenager? Will he be able to satisfy his sexual and love needs?

We would like to emphasize at once that none of this questions is groundless or untimely.

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There is a common opinion that people with Down syndrome can not be psychologically or socially mature, that they can’t control their sexual desires and so their sexual behavior is a big problem for them as well as for others.

Here we would like to note that if parents manage not to get to anxious, they can help their baby develop healthy sexuality and socially accepted behavior starting from the first months of his life. They can do it while taking care of him and paying respect to his physical and mental autonomy. Children – little boys and girls – naturally start getting interested in the difference between sexes at a certain age, including differences in the bodies of men and women. Each person correlates himself with one of the sexes.

Children try to imitate parents of the same sex: girls imitate their mothers, boys imitate their fathers. They also compete with the parent of the same sex for attention of another parent thus trying to confirm their priority. It’s important for both parents not to sacrifice their interests of a wife or a husband and to keep a part of their life which they spend only with each other (without their child) still being emotionally approachable for the baby.

This will help their child understand and accept certain restrictions and learn that he is not an adult yet and still has to grow up a bit, but he can imitate adults playing.

Yes, a child can behave like a mother or a father, but he can still be himself. It’s important for a child with Down syndrome to accept his sex assignment just like any other child. He or she should understand whether he or she is a boy or a girl, a man or a woman, not just a “sexless baby” for the years to come. Such things can happen if parents don’t pay any respect to their child’s needs.

If a child recognizes himself as a person of a certain sex, he will imitate the behavior of people of the same sex. And, on the contrary, if he has to stay a sexless baby (not physically but psychologically, of course), who doesn’t have to control himself because he is so small and helpless, he will not strive to follow the rules which exist in the world of adults, the world of grown-up men and women.

Social behavior doesn’t depend directly on the intellectual level, but it does depend significantly on social experience of the child and the one he starts getting in the family from his early days. Being a teenager is difficult for any child, including

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the one with Down syndrome. The body changes at this age and the person starts feeling some unfamiliar wishes which he has to get accustomed to and to learn to control. It is quite a difficult task. During this period, children often quarrel with their parents and, at the same time, behave too trustingly and sometimes even unadvisedly with strangers.

They literally want to break free from the family and hang out with a group of peers. It is quite likely that a teenager with Down syndrome will feel the same needs. It is rather natural, but parents should remember that if by this time their child doesn’t have any idea of the standards of social behavior, of certain boundaries and of keeping the needed distance in relations with others, he can get into a dangerous situation!

You can’t cancel your child’s growing up, but you should know beforehand that this difficult period will come and you will have to and need to go through it. Just like during all the previous years, you should be tolerant and try to make this hard adaptation to the changes that have happened inside him easier for everyone. You can help him by making sure that by the time your child becomes a teenager he will already have the experience of living in society, that he is familiar with the standards of behavior, that he has learnt to cope with his emotions and that he is able to satisfy his wishes using socially accepted ways. It’s important for him to be ready to recognize the authority of the people who are older as well as to have an opportunity to be affectionate and to love his family and friends and also to have his own hobbies and interests.

Just like all usual people, a person with Down syndrome also needs friendship, love and sexual relations. He will be able to make these relations healthy if a firm foundation for that was laid in his early days.

At first any child builds relationship with the most important people in his life: his mother, father and other relatives.

What will this experience be like? It’s very important for a child to be self-confident and active, to have opportunities to make sure that his actions, feelings and messages really mean a lot for people he loves.

Later, establishing contacts with his peers at the playground and in the kindergarten, with his neighbors, with other people in public transport, he will learn more and more about himself, about others, about relations between people and he will perfect his own way of communicating. He will learn it, live it and understand through his own experience,

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not just “comprehend” ideally. It’s always not easy, just like it’s not easy for any of us to learn to walk… to fall down, to hurt ourselves, to stand up again, to look for support, to go down on all fours… and to still continue learning how to walk.

Dasha is ten years old. Her mother was worrying about how her daughter will demonstrate her arousing sexuality and how she, her mother, will talk to her about the relations between people of different sexes. Dasha hasn’t made her mother worry until now: well, she is just a girl, though she has Down syndrome, she is very outgoing, she has friends who suggest her going for walks with pleasure… These girls watch over her, but Dasha likes watching over those who are younger than her herself. She assembles toys from “kinder surprise” for her 2-year old little sister.

Dasha was 8 years old when her sister was born. The girl started being interested in how babies are born. She performed small plays with her dolls: they gave birth to babies, took care of their new-born children and fed them. Dasha’s mother says that it was then that Dasha found a new ability of her body. She started noticing pregnant women and played pregnancy games in which she put a ball under her jumper. She behaved just like other little girls playing (except for the fact that most of them usually play such games at a bit younger age) when they try their future role of a mother on.

One day, looking at her growing-up girl, Dasha’s mother decided to talk to her about menstruation which she might soon start having, just like other girls. She didn’t want her daughter to get frightened when she first sees blood on her pants. Dasha listened to her mother carefully and asked: “Will it mean that I can have children then?”

This question took Dasha’s mother by surprise. But she answered this way: “Well, basically, yes, but you still have to grow up a bit for that”.

And this is really true. Dasha got the true answer to her question. It is very important – to get answers to your questions at once.

We suppose that children themselves will give answers to all the questions – the children who are now one month old, one or three years old and who are growing up in the family and in the society where their needs are respected and where they can really learn the standards of social behavior.

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What kind of future awaits my child?

Nowadays it becomes more and more obvious that people with Down syndrome have great potential, that they can fulfill themselves both personally and socially if they have opportunities to develop comprehensively from their early days. Just like any other person, they have a chance to live their only, unique life which is infinitely valuable both for them and for people who love them actively, fully and in a proper manner. They have the gift of being able to be joyful or sad, to experience happiness and suffering, to become attached to someone or something and to go through losses, to learn and to get their own experience.

Masha, a woman with Down syndrome, is forty and she considers her life to be rather successful. She has friends, people she loves and relatives. She has permanent work and she is a called-for leading actress in her theatre. She is a charming person and she is good at small talks. When such a talk is over, you can see a shade of sadness on her face. You can sometimes see such sad expressions on faces of children with Down syndrome although usual people also look this sad from time to time. Who does a person with such look remind? Perhaps, it’s Mermaid from Andersen’s fairy-tales. Maybe we can imagine her like this: being not able to say something, not knowing how to say this, maybe even not knowing what exactly to say, but wishing to do it. “Mermaid’s syndrome”. It’s not offensive because mermaids actually have something to say. They know not less and not more than other people, they have their own knowledge. Mermaids feel, understand, know, suffer and love. They just don’t speak about their pain or happiness. Don’t they have anyone to talk to? Or maybe they will talk if there is someone to listen to them.

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How a psychologist can help It is not common to ask a specialist to help us with our psychological problems in our country. At the same time we can’t always sort our problems out ourselves. And it’s not by accident that we feel the need to talk to someone and to get someone’s support: we want to lessen our anxiety, pain, loneliness and despair. So we talk to our friends, doctors and teachers. This can really help. But this kind of help is pretty limited anyway. It’s just like a professional psychologist can never replace a close friend or a neighbor. Getting help from a professional psychologist is another possibility to improve the quality of life, it’s just like going to a dentist when needed. You can actually do without him, but it’s him who knows how to cure teeth.

A psychologist shouldn’t give any advice or criticize anyone’s life. His task is to be a person one can talk to and to help him see and understand both the situation he has found himself in and his own abilities and opportunities to change something.

Let’s imagine a person sitting awkwardly on a chair with his luggage on his lap. He needs to find something in this bag or suitcase which he packed in a hurry and anxiety. He had too little time to examine everything thoroughly and to put all the things in the right pockets and sections.

Perhaps, that’s what chaos in our minds looks like when we didn’t have enough time and strength to sort out our emotions because we had to put ourselves together to survive and live.

It would be much easier for a person sitting on a chair to sort everything out if he had other chairs or tables near him. One of a psychologist’s tasks is, sort of, to provide a person with these chairs and a table which is actually some space for him to make everything clear.

Sometimes it is enough to get out of a vicious circle of problems.

While the difficulties we are experiencing seem a solvable task for us, we manage to deal with them and feel ourselves competent enough. Having solved another problem successfully, we gain more confidence, more trust to ourselves, we feel that “we can” and start trusting life more too: we know that we can handle the difficulties it offers us.

If we face a task that we don’t understand how to deal with, it becomes a real problem for us. Here we have several ways to act.

For example: 1. I can’t solve this problem, but others can do it for me. (This task is not for me, I don’t even want to know anything about it, let others (the more competent ones) deal with it).

2. I can’t solve this problem and nobody can help me. (This task can be solved only if the circumstances change).

3. I can’t solve this problem and I need help. (I can’t deal with this task, but if someone helps me, I will be able to do it).

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Working with a psychologist is like choosing the third option. If you feel that you need such help and support, you should go and talk to a psychologist.

So, come on, start your way. The unexplored way of your own parenthood, your own journey. Your own discoveries await you. They will add to the range of discoveries of your predecessors and will serve as a lighthouse to your followers. And all this is an uneasy experience of our common human existence.

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A list of books and brochures for further reading Zhiyanova P.L, Pole E.V. A Baby with Down Syndrome. A Guide for Parents; 2012 Zhiyanova P.L. Speech Development and Communication Skills in Children with Down Syndrome. A Guide for Parents; 2013 Medvedeva T. Cognitive Development in Children with Down Syndrome. A Guide for Parents; 2010 Susan J. Skallerup Babies with Down Syndrome. A New Parents’ Guide; 2013 Down Syndrome: The Facts; 2012 Reading Book for Parents: A collection of articles published in “Take a Step” newsletter in 1997-2008; 2010

Books and brochures published by Downside Up is distributed free of charge.

You can make an order at: 14a, 3rd Parkovaya st., Moscow, Russia, 105043 Tel.: (499) 367-10-00, Fax: (499) 367- 26-36 E-mail: downsideup@downsideup.org

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Series “Children with Down Syndrome and features of their development”

Kirtoki Alla Rostova Natalia

When a baby with Down Syndrome is born Talking to a psychologist Cover illustration by N. A. Ilnitsky

Russian non-profit organization “Downside Up charitable fund” 14a, 3rd Parkovaya st., Moscow, Russia, 105043 Printed at “ABT Group printing office” LLC 3, 3, Chernitsinsky st., Moscow Published 25.02.13.

Number of copies printed: 5000