Our tireless ark… an experience of life in adversity

МОО «Дорога в мир» www.dorogavmir.ru www.russia-speciallife.org

Our Tireless Ark… An Experience of Life in Adversity

Moscow 2009

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Our Tireless Ark... An Experience of Life in Adversity. Texts compiled, edited and introduced by Svetlana Beilezon. Translated from the Russian by Anna Yurasovsky.

Moscow: the Narnia Centre Press, 2009.

The English text edited by David Brummell CB

This book was produced on the initiative of the Inter-Regional Non-Governmental Organisation “Road Into the World” [”Doroga v mir”], set up by parents of children who suffer from developmental disabilities involving serious impairment of speech, communicative function and behaviour (http://www.dorogavmir.ru/ ).

For requisites of an account in Russian roubles, please visit our website in Russian First published in Russian in the Russian Federation (original title: Neutomimyi nash kovcheg. opyt preodoleniia bedy) in 2006 by The Narnia Centre, Moscow (www.narniacenter.ru) Reprinted 2007 by The Narnia Centre, Moscow

© Svetlana Beilezon, Editing © Anna Yurasovsky, Translation © Elizaveta Prudnikova, Design and Production

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CONTENTS

Acknowledgements A Word from the Editor Part One Lives A Word from the Authors and About the Authors To “Mums with Disabilities” – with Love One Vasya Maslenkin Two Masha Staroverova Three Zhenia Leonov Four Lyova Virin Five Milana Derevyagina Six Tanya Topchan Seven Kolya Filippov Eight Alyona Trubikhina Nine Ghena Akimov Part Two The Bottomless Well Requiem Listen …

Ten Mila Maziy Listen …

Eleven Yura Beilezon Part Three Our Tireless Ark Listen …

P. S. Once More About Love P. P. S. Song of The Sea Diva Afterword to the Second Edition Acknowledgements About the Editor About the Children Note on the Organisations

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A Word from the Editor It is not perhaps an easy task to begin any book, but I now have to begin this one. And it depends on me alone whether you will read on, or put it down with indifference.

I remember a story that I read as a schoolgirl. A plain girl was standing in front of a choir. Her eyes down, she was waiting for a tiny glowing spot to appear in her breast. And then her hands would fly up – and the children’s voices, following the precise movements of her hands, would be joined in one pure and radiant sound.

Just like her, I am now standing before you, waiting for the birth of my own tiny spark of light. Because the first sound can only be light and pure.

And I am slow to begin because in this book there is not going to be a single word about victories or winners. Because its authors are merely parents – the parents of children with developmental disabilities, and these children are now entering their own adulthood. Because I, your guide into their lives, know personally all these children whose stories are told here, and their parents are my friends. Because I am myself one of those mothers.

Now, it seems, the time has come...

Svetlana Beilezon, mother of a grown-up son

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*** Svetka phoned when I was putting on my coat.

“Auntie Sveta,” she told me, “I’ve found an excellent occupation for you. You must go to the homes where disabled children were born, and explain to their parents that they should not place their children in special institutions - that their children are good and warm-hearted, that they really may be loved!”

I felt a lump in my throat.

“Yes, my dear, you have understood it all in the right way. I am doing exactly what you want me to, but instead of walking there I talk to them on the phone, write letters…”

“Auntie Sveta,” Svetka went on hurriedly, “you see, my Dad has taken me back from the institution, and now he says that he is happy and even feels younger – just because I am with him!"

She hung up.

A minute later, when I was already in the doorway, the telephone rang again.

“Auntie Sveta,” urged Svetka excitedly, “only I implore you, do not even mention it to the parents - that their sick children are a cross, and their duty is to bear it! That - please do not tell them!”

S. B.

_____________________________________________________________________ Svetlana (or “Svetka”) Strizhevskaya is 27 years old. She graduated from a special school for children with impaired motion functions, then studied at a training college to get a special education teacher’s diploma. She lived at home with her parents, being cared for mostly by her mother. After her mother’s illness and death Svetlana spent some time at an institution for the disabled, then returned home to live with her father.

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*** …You know, in the beginning I really believed that there were not so many of them – those in desperate need of great, special care. Because at all those marvellous places I was meeting more or less the same, rather limited, group of children with their parents. We still keep in touch, and we follow the development of nearly everyone of that very first cohort.

And I remember my shocked astonishment when I learned the official statistics – thousands of disabled children registered in the city of Moscow alone! Where are they, who is helping them? Yes, some of these children have been given away to state orphanages, to lead there a senseless, inhuman existence. It cannot be called “vegetable”: the life of a plant is beautiful, perfect. But the life of a human being who is not regarded as such and therefore has been deprived of love and opportunities for communicating with people – and thus of any prospects of developing as a person – is simply dreadful.

When one sees footage of life at such institutions, the first impression is that it is a breeding farm for non-humanoids. And then you realise: this is where they suggested that you put your own child. I do not know anyone from our “mums’ community” without a story of her own to tell about persistent attempts to talk her into giving up and forgetting her child – who anyway was going to grow up to be a dumb animal, a burden to everybody! In a sense, in ancient Sparta they practised a more humane approach by destroying such babies immediately after birth...

Tatiana Avilova, mother of a grown-up daughter

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*** They say that in Old Russia children like ours were looked upon as “God’s people” – “the blessed ones”. That was certainly before my time. What I remember (and it used to be like that for many years) – their families were ashamed, and so their existence was hushed up, they were hidden from neighbours, or given away to institutions – in short, kept out of sight.

Nowadays, children and adults with serious disabilities are coming out of their hiding-places. The disabled have been noticed by kind, good people, who are trying to draw public attention to these “special individuals”, who organise for them exhibitions and festivals, and say and write: look, just look at their abilities! How, unable to see light, they recite and compose poetry! How they dance without hearing music! How they draw by holding crayons with their toes or teeth! How they – those who can neither speak, nor read or write, nor even behave and communicate like ordinary human beings – perceive the beauty of nature, understand shape and colour, and what masterpieces of “art naïf” are produced by their clumsy hands! How even those, who can do no such thing, are able simply to look with their amazingly perceptive eyes directly into our souls!

And all this is true. But you see, those children have come into this world in the same manner as all the others, the “normal” ones. They were born to parents just like other parents. Their families had looked forward to their arrival, and happily welcomed them into this world. But fate decreed otherwise.

All the prospects for these children and their families instantly changed, and became uncertain and frightening. However, disabled children, in spite of everything, are still children – and human beings. No doubt it is essential to create appropriate conditions for their talents to blossom. But to my mind, there is something else which is of no less importance for us, the providers of such conditions. It is essential to remember that every one of us is a unique individual. That not everybody is talented, but that each one of us has, no doubt, been born into this world to live his or her own life, and so wants to be needed. And that really there is no borderline dividing them from us, because at any moment any of us, too, may be deprived of the right of choice.

So it is not just them, it is us - all of us – who throughout our lifetime need care, warmth, recognition. IT IS US, ALL OF US. S. B.

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Part One

Lives

“There are people who go on for years without being recognised by anyone, who pass through those years as if they were non-existent. And then, suddenly, they are faced with a stranger who gives them a penetrating look, a stranger in whose eyes that person - rejected, forgotten, thrown into nonexistence – instantly comes into existence. And that is the beginning of a new life. We should always bear this in mind”.

Metropolitan Anthony of Sourozh 1 “Ways of Christian Life”

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Anthony, Metropolitan of the Russian Orthodox Church (1914 – 2003), founder and for many years bishop, archbishop and metropolitan of the Diocese of Sourozh, the Moscow Patriarchate’s Diocese for Great Britain and Ireland. His book Puti khristianskoi zhizni. Besedy [Ways of Christian Life: Conversations] (in Russian) was published in Moscow in 1998.

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A Word from the Authors and About the Authors We are parents of grown-up children with severe developmental disabilities.

Things that are usually picked up very easily by ordinary kids – how to walk, pronounce words, behave decently in public – could be instilled in our children only with tremendous effort. Some of them could not attend school and so had to be taught at home; and, for many, “school wisdoms” remained an alien ground. The profound impairments of perception and cognitive function are all there - only milder, just as their idiosyncratic behaviour, which can be funny or frightening to others...

Nothing can be done about this. And we love our children just the way they are.

That is why, in 1997, a few dozen families residing in and around the city of Moscow established the Inter-Regional Organisation Road into the World – to help their children find their place in life.

This slim book is part of our plan: we would like to tell the stories of our children. When the idea of this book was germinating, we thought that we would publish the testimonies of several members of our organisation. Later it became obvious that love has no boundaries, and so membership of our parents’ association was no longer relied on as the main criterion for selecting contributions from authors.

Between the covers of our book there are eleven stories. There could have been many more, but we believe that these are enough. Those of you who are ready to open your hearts and join us on our voyage - we hope to show you the shortest and safest way to avoid two perils: the euphoria of our love that can carry you away from firm ground, and the despair that you may fall into because of that love’s hopelessness.

S. B.

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TO “MUMS WITH DISABILITIES” – WITH LOVE Instead of an Introduction

Previous Life: Impotence and Pain …the staggering discovery of how silent fate can be, precisely at that moment when it explodes.

A. Barricco, Ocean Sea

From the pieces of broken glass – my life’s episodes lying here in front of me – I’ll try to assemble a whole picture. And hope not to cut myself in the process.

So where to begin?

My son Yura, disabled since birth, is now nearly 24 years old.

That’s how it used to be...

My son was still very young then. I rented for him a small country house outside Moscow. In the evening, after work, I would go there, to my beloved boy. The commuter train would be dragging towards the city’s edge. Outside the windows I would see a slow progression of station buildings, bleak pale yellow walls covered with graffiti sprayed in outlandish colours. Then, in the late 1980s, spray paints appeared as a new product in the stores, and teenagers were trying them on all available surfaces. The graffiti’s contours were wide, with uneven edges.

I was tired after a day at work, and the city-scape in the window was grim.

I would close my eyes and watch a freshly developed film slowly unwinding before me: all the frames were blank - not a single picture, only each empty transparent rectangle was crossed out with two thickly splashed lines. That was my son’s life.

I believe that I am not alone in such experiences. Like any of you, I am attempting to rewind the film back to the very beginning: what if next time everything turns out all right, and my boy becomes healthy? Then we’ll just discard those terrible crossed-out frames – they’ll go into the dustbin.

No, this is not possible...

And so I was thinking: Oh Lord, why this punishment? All right, I am a grownup woman, but why him – a newcomer in this world? Oh Lord, I would say, see how 10

nice he is, his eyes are so wise – but why are they so non-transparent, why does he scream so terribly, and why can he not sleep or eat properly, or correctly shape words?

And he is unable to sit still for one minute. And grannies in the playground are scared and drag their grandchildren away from him, to play in some other yard. Why can he not study, so that the teachers do not know how to deal with him?

I simply could not believe that there was no one to understand and help.

Later on, I thought: all right, so they cannot do anything. But I’ll take care of everything myself – I’ll understand and I’ll cope. And I’ll find a key to unlock my child – just like someone who, after long futile groping on the wall behind a cupboard in a strange dark room, finally touches the switch-button – and turns on the light! And my boy will begin to understand. And he will become like everybody else. All I need to do is to find that switch in the dark …

I am not going to recount here my tale of despair and impotence, fear and loneliness - you all know it yourselves. There is no sense in sobbing that there was no place for us in this world; nor in complaining that my child could get neither proper medical care nor tutoring, and was banished from everywhere. However, it all happened exactly like that.

It was like this for 14 years.

But then things changed.

Another Life In December, at twilight, happiness came.

It was brief.

Very real, adult happiness – not the one you get from books!

M. Tsvetaeva

Nearly ten years ago my son and I went for the first time to a rehabilitation summer camp.

Or, perhaps, it would be better to say that we just found ourselves there, in some miraculous way! It was all quite unexpected and wonderful. Two buses took us to the site of a former children’s summer camp. There were some 30 families, each one with a disabled child.

We had been told that here we were wanted, and that our children would have therapy sessions and tutoring throughout the whole period of our stay! New vistas were opening up before our eyes. All around us, there were disabled children enjoying life – some could walk on their own feet, some were held in their parents’ arms, and some were taken around in wheel-chairs. My boy, an excitable teenager with a severe mental disorder and behavioural problems – for the first time in his life – found himself amongst his peers. And he simply took off!

Within a week I was called aside by our favourite tutor, who warned me that if I allowed my child - whom everyone in the camp was afraid of - to take one step away 11

from me at any time, we would be expelled. Similar warnings were given to some other parents.

There were whispers around the camp: children with mental disorders should be grouped together, and be admitted to the camp at a different time, separately from all the others! And those with Down’s syndrome should also be assigned to their special shift, away from all the others. And as for those with palsy – they should also be separated from all those others. Why turn a summer camp into a madhouse?

My face became swollen from tears: so, after all, we were not wanted here either? I cried for three days. Then I tried to imagine how a mother might feel – the one whose child could barely move or pronounce a single word – when that child was being nearly run over by my unruly teenager before her own eyes.

So I came up to one of those mothers and began asking her about her child. And I could feel her fear and pain - no less acute than my own. And I told her about my own boy. Oh I see, she said, and imagine, I thought that he was simply an aggressive ruffian…

Do not be afraid, I said to the parents of mentally handicapped children. No one means any harm: those mothers – they are only scared to death…

Of course, our fears were still there. But we were now coming together in an attempt to understand others and to explain ourselves to each other. There was no other place to go, and so we could not afford to lose that tiny oasis.

The shift in camp lasted for a little more than two weeks. Towards the end of it, everything had changed. We looked one another in the eye. We smiled at other people’s children; we were trying to help them: they have become our own children.

After the end of that summer, we began to see and help one another on a regular basis. And every new family that came to the summer camp in later years would become part of our community and begin a new life.

That Life May Go On Why fear prison, sorrow or damage To hearth, to health?

That’s so trivial – compared With Love and Death.

M. Shcherbakov

We all are commonplace people: wise and silly, weak and strong, calculating and altruistic.

We are commonplace parents. It is not a punishment – it is simply that the dice have fallen this way.

We are not making sacrifices - we simply love our children.

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In my life, I have already come a long way, and understood one thing: no one owes anything to us. We, the parents, owe something to our children.

These children are burdened with serious health problems. They need medical care, tuition, training in daily living skills. We, their parents, cannot possibly cope alone. But who is going to understand, if we fail to find and understand one another, and do not join hands?

A child, while staying at home, will not acquire the skills necessary for an ordinary life among people. Together we can provide the warmth so desperately needed by our children - and learn a lot from one another in the process. To escape loneliness, we can simply gather at somebody’s home, have a tea party, sing songs, and discuss books. We can go for a walk together - or we can simply talk.

The State is short of funds and time, neglectful of our desperate needs? But together we can begin to fight for our rights.

However, our primary right – the right to live – should first and foremost be properly understood by ourselves, and only then can it be asserted before the world. It seems to me that we can do it by simply noticing the people who happen to come near us. By trying not to be frightened, and not withdrawing into our shells. By simply offering a smile.

At first, it can be just the parents of disabled children – those just like us. But soon you’ll realise that the able-bodied ones are faced with no less hardship, and their life sometimes is no easier than ours.

There are times when you feel at the end of your tether. It seems too hard to reach out, to empathise – because your own burden is beyond endurance. You feel that it is too painful to take part in the lives and troubles of others - when your own pain stifles your breath during the day, and keeps you awake at night.

But truly, this is not the case. We all are mothers. And every one of us remembers how we held our child at our breast, and when there was not a single drop of milk left we knew that at the next feeding time it would flow plentifully once again.

Are we really so weak? Just look back - what we have been able to endure so far...

We are just like everybody else. And our children are just like everybody else’s – they are our children.

S. B.

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We have a very simple rule: a work is “good” only if it tells the truth.

Describe what there is, what we see, hear, do…”

Agota Kristof, The Notebook

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One Vasya Maslenkin The youngest hero of our “history novel” is 13-year-old Vasya from the city of Ivanovo. He has everything that is necessary for a good life – his mother Olya, four elder siblings – two brothers and two sisters, and even a nephew, one-anda-half-year old Vanechka.

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Mother Olya: A Child For Pure Joy I love him dearly.

He is everything for me: son, sweetheart, warmth and joy, the light of my life.

The justification for and substance of my disordered life. Sunny, Kitten, Bug (he responds to any of these names), Baloo Bear (or somebody else for the day – Shrek, or Jackie Chan, or his favourite Petrov and Vasechkin 2 in one person, or Gollum – well, he does look a bit like Gollum, but I would prefer someone more pleasant-looking!).

He is my prize – I do not know for what good deeds. When Vasya was just a baby, a priest, who attended our meeting for parents of disabled children, told us that this was a punishment for our sins. Later another Father, to whom I turned for advice, said: “But you see, I do not really know if it is a punishment or a prize…” Now I am certain – and this certainty has been with me for a long time: it is a prize. Not my prize – Vasya is just a prize, all by himself. A punishment! With those wonderful trusting eyes, this eagerness to embrace everyone?

I begin to miss him as soon as we part. I could hold him all day long in my arms: sometimes, it is true, I get angry and scold him – but as soon as his head is near mine, I forget all that nonsense and kiss him.

He is someone who will never grow up. The woeful observation “grown-up children are strangers” is not about him. Long ago, I developed a theory that in any household, at all times, there should be a toddler under three – for pure joy. And so God send me – for ever – such a pure baby! A baby who will always need me, and love me; who will never become too shy to tell me about his love, to kiss me and console me, and to hold me so closely and tenderly in his arms…

But when he was born, and I heard for the first time these horrible words: Down’s syndrome, Trisomy 3 – it threw me into a state of complete horror and despair.

This state lasted for a long time. I was ashamed to go out into the street - for the neighbours to see. If only it had been any other disability! I was prepared to accept and heroically shoulder any burden - but not mental retardation. I had had the best grades in my class at school… I used to live as if guarded by a glass wall from the outer world. I had been totally unprepared for this. I do not think that anyone can ever really be prepared for a thing like this. Nothing would console me, and I had only one thought: if only I could wake up one morning and realise that all this had just been a bad dream...

His feelings and behaviour were angelic: never naughty, he would always let me have a good sleep at night. He is my fifth child, so I can make comparisons. I was always peering at his face, and could always feel that there was really something very special in this child!

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Two boys, the heroes of a popular children’s film “The holidays of Petrov and Vasechkin”.

Down’s syndrome, or Trisomy 21, is a chromosomal disorder caused by the presence of all or part of an extra 21st chromosome. Individuals with Down’s syndrome tend to share certain physical features and mild to moderate intellectual impairment. Given favourable opportunities, they can and do learn, developing skills throughout their lives.

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Then I just got used to it all. There was no more of that feeling of life’s injustice: if there is so much unhappiness around, why should I be spared?

And later on it turned out that this was NOT UNHAPPINESS. He was growing, and started to walk, and said “Mummy”, and learned his first letters, and managed to read his first word… And he was very funny, and loved everybody, and would embrace unknown elderly women on the tram, and greet men by shaking hands with them, and all these people (well, nearly all of them) felt warmly towards him…

He wanted very much to be with other children. When I took him along to pick up his elder brother at the kindergarten, it was not easy to pull Vasya away from there.

But once there was a children’s party, and they asked the two of us to leave – suppose Vasya would make trouble?

Not because he was indeed troublesome, but just in case, as a precaution. We walked home crying – both of us.

Inspired by a lot of advanced ideas from literature on the subject, I started my attempts to get Vasya into a kindergarten, being aware of just how important early socialisation would be for him. But if a group’s tutor agreed to take him, the nanny would be opposed (without having even seen my son): “You are not the only employee here”, she would tell the tutor. If I succeeded in coming to an agreement with the kindergarten principal and physician, I would meet with opposition at the polyclinic (“Why exactly do you need this?”). At a special kindergarten for children with speech problems they asked for a letter from the District Department of Education. I brought a request in writing, signed by the Department’s head: “I am asking you to treat this case as a mother would…” To no avail: they still refused to take him. At the special kindergarten for children with oligophrenia 4 they did not even want to look at him: “We take only those who are able to learn…” And he was such a good, clever boy, with a brilliant letter of reference from the teacher whom I had asked, on a private basis, to prepare Vasya for appearing before that wretched psycho-educational assessment board. They would not even look at that letter of reference, and said to me 4

Oligophrenia (Greek oligo for ‘deficit’ and phrenia for ‘mind’) is the term applied in Russia to mean congenital mental retardation, understood as an evenly balanced impairment of all cognitive functions. Its severity levels are: “debils” (the mildest form), imbeciles, and idiots.

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words that I will never forget: "How can our children benefit from your son's company?"

And I want to yell back to them - all those officials, who are still saying “No” – in response to my present attempts to enrol Vasya in a mainstream school: "Yes, they will benefit! And a lot! And he can give them much more than you can imagine - even if he learns none of those school subjects! He’ll give YOUR children (but in truth they all are ours) an opportunity TO SEE A DIFFERENT PERSON – someone who is not like them. An opportunity to understand, pity, help and respect that person – and in doing so they will grow and mature in spirit, and bring the world one step farther away from war – towards peace, and from indifference – towards love, and from chaos – towards beauty…

(Throughout all those years of his life - and my struggle for an adequate life for him - I was astounded by one thing: the vast majority of those who were saying “No” were women – mothers. Was it so impossible for any of them to imagine that she - or her daughter – could have given birth to a child like this? Would they then be speaking to me in the same way? However, we all have to face our own trials. Now, with my experiences, it seems easy to judge those people, but I remember very well how, as a child, I crossed over to the other side of the street, to avoid coming near a retarded teenager!)

For some reason people are afraid of our children.

Mainly, of course, because of ignorance. However, many of “us” are also afraid of “normal” children – that they will bully and hurt ours. But consider this: why are we so fond of reiterating that the world is cruel – when the world is always, actually, just you and me? There was a period when my son, despite all obstacles, was studying at an “almost mainstream” school. He was happy to be with the other children, and they were happy to be with him. I do not remember anyone ever wanting to bully him. They gave him toys, tried to teach him things, and embraced him when meeting and parting.

One very 18

belligerent boy, who often hit everybody around him, never lifted a finger against Vasya. The teacher respected my son. Need I add that I never heard a single word of objection from the other parents?

Now Vasya is 13 years old. I could have told you a long story of all the troubles involved in his educational process. The tears, emotional distress, stupid stereotypes, injustices, hopes, successes big and small but of no interest to anyone. I could have told you why I took my son out of those establishments that agreed to keep him, and struggled hard to put him where he was not wanted. I could have told you all of this, but I won’t. Each of us has a story to tell about her “passions”. None of these stories would surprise any of us - or sound convincing to our opponents. We do need inspiring examples of victories, but this is not my case. I admit that I have not been able to provide everything that my child needs – I have fallen far short of doing everything that I know I could have done. I would say that I bear much more responsibility for my son than those hostile strangers…

He now goes to a school for children with special needs, but I never stop dreaming about getting him into a mainstream school. I often feel discouraged, but in brighter moments try to convince myself that everything is progressing as it should, and that the most important thing is to avoid futile fixations on unattainable things and to just go on living. There are things that no-one can prevent me from doing for my child, and I need nobody’s help or permission to do these things - but instead I plunge into suffering, which is of no use to anybody.

I am against any New Year parties and festivals organised specifically for the disabled, just as I am opposed to any “ghettos”. Of course I know that my child is different from others, and will never become like other children. And thank God for this. Really, there are no “others” – only the singular and special ones, and on our small planet, in our “Noah’s Ark”, we are going to be saved – or perish – all together.

To put it simply: I want his life to be complete. I want him to mix with normal children, to learn from them. To have friends outside his home. To enrich his existence with many things: music, art, literature, creativity. I want him to learn to swim, to ride a horse. To keep a diary. To learn English and history, chemistry and physics, to master mathematics, and to write essays. And to travel with him. And for him to stay healthy, and have a composed mind. And always to retain his innate gift of joy and love. In short, I want for him everything that I want for my other children. Everything except a family of his own. I do not believe that he will ever marry, although I know of a few such examples. But perhaps I am simply not ready to let him go… So that is the question: who needs whom more? Yes, I am prepared to let go of my other children – and not to keep them any more under my wing. I even want my grown-up children to become fully independent as soon as possible. But not my Bug. How would I manage without him? That is why, perhaps, I cannot imagine his future life - when I am no longer here.

I want him to have a job, and enjoy it. Like my eldest son, who became a historian, Vasya has known his calling from childhood: his love of animals. He knows much more about animals than I do – and I cannot understand where or how he got all that knowledge! Having taken him for some time to a class at the “Animal’s Corner”, where children are taught to look after small animals, I have now also learned a thing 19

or two, but he is very far ahead of me. Perhaps he will be able to find a job at the city zoo? I am sure he will be happy there. But it is also necessary – although it is already a bit too late – to get him to love the drudgery of work. Any work has its drudgery in addition to other, more exciting things…

I know that, so far, I have not succeeded in this. Thank God, he lives in a family, and he has brothers and sisters who love him. But his position in the family is special: we treat him as a small and spoilt child, although he is already a big boy. Well, he has learned how to make his bed - more or less. Sometimes he can shop for simple things. But this is not enough: I have failed to bring him up as my helper. And I often do things for him that he is perfectly capable of doing himself. And I consider this to be my great failing.

And there is another “but”. He often displays childish whims – at home and in public, and they are often overlooked. Well, I know why – because of his condition.

However, I know we should not allow this. Social and cultural skills are not innate, they are acquired, and disability is no excuse. But I am not sufficiently firm, confident, or consistent in my demands. And through this I betray him, by creating limitations to his future life. Life without his mum, who is not going to be forever at his side.

And one more “but”. I suffer very much from the hostility towards the disabled, displayed by society and the State (yes, the State which, having adopted good laws, fails to enforce them, refuses to recognise my child, to view him as a real citizen, and which pushes him out of the “healthy” community – be it a kindergarten or employment). But if I suffer, my child also suffers – because I am sad, nervous, and set for him tasks and requirements that are perhaps unrealistic. We were not born “in America” or in any such place where we could have enjoyed a better life - so what?

Simply, it was destined to happen this way, and not otherwise.

I am sure that the most important thing is to believe in him and to be consistent in my expectations. To make our life independent of any officials. Or at least less dependent on them.

Oh Lord, do You know how grateful I am for Vasya? How we all, my four elder children and I, love him? He has given me so much more than anybody else - of this I am certain. He has cleared my mind, by removing any opportunities for pursuing false goals like a career or fame, and shown me true values. He has taught me love. Or at least - how to love him. How can one not love him? It is more difficult to love the “healthy” ones – but after looking at Vasya you come to understand that they are as unique and as defenseless as he is. That you need to look inside, deeper. And forgive.

And the hardest thing of all: not to think of oneself… And Vasya continues to teach me every day. To be open to the world and to everyone I meet along the way. To be faithful. To be able to rejoice in every small thing...

We get on a bus, Vasya takes off his hat and pushes it into my hand, gives a shriek, people turn to look, and I scold him. And at once – inconsistently - I ask him to give me his dishevelled head to kiss. And his little nose. And his little eyes. I whisper to him: “Use words…” He says: “Enough, now sleep.” And we huddle together and doze off - till our stop.

20

We arrive. I wake him up, hurry off the bus, drag him along the street. Once again we are late! He does not care; he keeps asking me - for a hundredth time! - in what way does the ordinary owl differ from the eagle owl. I just do not know! No, he does not believe me. I ought to know. Yes, indeed, I remember! An eagle owl is bigger, and it has pointed ears. There is also the long-eared owl, but that one is small…

I am writing while he is quietly snoring on my couch. Soon I’ll go to bed, too, and I’ll stroke his face, and without waking up he’ll kiss my palm…

Son, you know how I love you?

Enough, now sleep.

While our book was on its way to being published, there was a happy development in Vasya’s and his Mum’s life: they were admitted to the mainstream school near their home. Vasya enjoys going there, the children and grown-ups like him, he now has new friends. So thank God, and may it always be this way in the future…

“Family”. Drawing by Vasya Maslenkin

21

Two Masha Staroverova Masha is a gentle, trusting and sociable girl, always ready to smile. She is full of light. She reminds me of a silvery head of a ripe dandelion - or a fluffy teddy bear. Masha’s mother Svetlana is pretty, athletic, active, full of curiosity and quick at learning new things.

22

Mother Sveta: The Cloudless State of Early Childhood I was born in a small military town, where the quiet and monotonous flow of life is only rarely marked by a wedding, a divorce, the birth of a child, or a funeral.

Such places offer no prospects for children with inordinate gifts - or for their opposites, those with special needs, even if they have some basic abilities.

Twenty-five years later, in the same place, my daughter Maria was born.

As a baby Masha was full of joy and all smiles. Her dazzling smile was directed at anyone who happened to look inside her pram. She was never upset – not even by wet sheets. Her grandparents were simply delirious with joy! The only thing Masha did not like was lack of contact - to be left alone, and she simply hated her play-pen.

All her developmental milestones were passed in due time – her first steps, her first words. It seems that nothing could have foretold our future torments. Masha was always calm, and displayed no strong attachments - even to me. Once it was necessary to leave her for a while with my friend, and in a couple of days Masha began to call her “mama”. And just think of it – it made me glad! Because later on my girl, with equal calm, could be left at a kindergarten alone with the other children, and she never started to cry, as some other children would do as soon the door was closed behind their mums…

In ordinary life children are born, reach a certain age and go to a kindergarten.

My Masha went there too.

She had an excellent tutor in her group. It was that woman who, after Masha had turned three, drew my attention to the fact that my daughter was different from the other children…

Indeed, I should have listened to the paediatrician at the district polyclinic, who told me: “You know, with a child like this you had better stay at home!” But I felt offended by that suggestion: what did she mean – for me to stay at home? I had a university degree, and worked in a good, prestigious field – software engineering.

Although, in truth, there was little sense in my work: I would go to the office for a week, and then stay away for a month on sick leave (at that time employees like me could not be fired, so they had to keep me on their staff).

Now I can analyse dispassionately the situation I was faced with. It must have been all those endless colds, attacks of bronchitis and ear infections at a very early age that put up a barrier between my girl and all the other children. Masha fell ill once again, and this time she had to be hospitalised – for a whole week, without me. During that week my Masha turned from a curious and joyous child into a quiet and subdued one. After this she would just sit silently in a corner. It became a problem to feed her, although previously Masha’s appetite had been very good.

In the summer we went to stay with my parents for my holiday, and they were shocked: “She is not herself, what’s happened?” But I was equally bewildered. How 23

had it all come about? My child used to know by heart so many rhymes, and now could not remember a single line! Her grandparents asked me to let Masha stay on with them, and I agreed, because it was time for me to go back to work, and there was not yet a place for her at the kindergarten.

In the next two months they succeeded in “rehabilitating” their granddaughter a little - by applying constant loving attention and feeding her delicious things. She regained her high spirits and interest in life, but fell forever behind her peers in her development. The cloudless state of early childhood was so familiar to her and easy to understand that now she was refusing to grow up.

When the children in her group, the youngest in the kindergarten, were asked what they wanted to be when they grew up, my three-year-old said she wanted to be a bear. What sort of bear - a toy? Or a real one from the forest? That was the beginning of our educational troubles.

Thus I had to bury my professional ambitions. And not only ambitions. How to live - when one does not fit the usual standards, when nothing in your life is “like other people’s”?

The “logic” class was judged to be too difficult for my daughter. Her collages and her paintings were the worst ones, and sometimes in the envelope with her name I would find only blank sheets of paper. She was only able to achieve anything on the rare occasions when the tutor paid her individual attention.

I remember the graduation party at the kindergarten. The children recited poetry, mummies clapped their hands, but my wretched child could only watch. There was no one for me to applaud, so I just grabbed my obedient girl and ran away. These were my first tears …

However, after kindergarten all children go to school. By that time I already knew that my Masha would not be able to study in a mainstream class, and so found for her a class for “educationally neglected” children. As I now see it, this was “an experiment in humanity” initiated by the City Department of Education. They had 24

found an experienced and highly esteemed teacher to be put in charge of this class. In her previous career, as one of the best teachers, she had been allowed to select wellprepared children for her class. And now she was trying hard to turn our “neglected” ones into “clever” ones, but the results were only misunderstanding and disappointments…

I am looking back at my own childhood.

I grew up in a social milieu where the life and living standards of each family were nearly identical: we were all the children of army officers. However, in our class at school there was one “special” boy. And also my friend’s brother was doing poorly at school. But we, the ordinary schoolchildren, regarded such children as stupid, we mocked them. The parents of our two unlucky peers were making every effort to ensure that they would obtain a secondary school diploma. Now, many years later, I understand only too well the plight of that boy’s father and my friend’s heroic mother.

I realise how hard it can be for parents to accept their own children just the way they are - so what can be expected of “society”…

Next year Masha was once again placed in the first form, this time at another school. In her new class all the children had developmental problems. Their teacher was a lady of advanced age, but, unfortunately, lacked any experience of handling such children. My daughter and I spent one more unhappy year there and then switched over to home learning.

I found a young teacher who agreed to give Masha lessons at home. All the formalities were settled. And it seemed that some progress began to materialise: Masha learned to read and write, although the intricacies of mathematics, as before, remained unattainable. Three years or so passed, and then an instruction was received by the City Education Department to the effect that it was not feasible to spend money on educating at home children who “had no prospects”. And so I began to shoulder the cost of Masha’s tuition myself.

Any attempts to register her as a disabled child in Astrakhan, the city nearest to our small town, were unsuccessful. In order to receive this “prize”, Masha’s specific condition had to be “augmented” by, say, blindness, deafness, orthopaedic or behavioural problems. By that time, my husband’s term of military service being over, I chose not to file any appeals, and we left for Moscow. Masha was already 14 years old.

At the district school for children with learning disabilities Masha’s file of documents was received without any objections, and then… she was placed in the same class with seven- and eight-year-olds. My girl could endure no more than two months there, and was crying all the time. The teacher had a way of striking Masha’s classmates with a ruler, and my daughter was afraid that this could also happen to her.

“So this is Moscow, the capital”, I thought, “is it really any better than a small town?”

The only advantage, however, was that her disability certificate was issued without delay…

25

Time was tragically running out, but we just stayed at home. Where could we go, to whom could we turn for help? The rehabilitation centre which I managed to find at that time could offer only something like a “sewing circle”. It was at the same level as at a small town…

And all that time I was aware that, for an individual with such a serious disorder, Masha could still accomplish a lot. She is a very well-organised person, she can easily adjust, and she is capable of realistic planning. It is true that she doesn’t pick up new things straightaway – she has to be taught meticulously, with patience, and for a long time, gradually overcoming her incomprehension and despair. But once a skill is mastered, it will stay with her for good! I knew that I had to find a place where the need for this approach would be understood, so that my daughter would receive the help she needed for her further development. Seek, and you shall find – there is truth in these words, is there not?!

Generally speaking, the mothers of such children are often guided by intuition.

And so it was with me: I managed to find a place where Masha now feels good – a ceramics workshop at the Centre for Curative Pedagogics. And today I can even visualise a prospect – like a tiny spot on the horizon, still very, very remote – of Masha getting some vocational training 5, and perhaps later on - a job. Although, of course, there are still huge problems to deal with, because Masha cannot (and will never be able to) live on her own. There will always be the need for someone to be beside her, directing and organising her life. Masha cannot even be trusted to travel safely alone across the city, despite her excellent visual memory: although she is now a grown-up young woman, she is gullible, open and vulnerable as a child.

I wish so much that there could be people near her capable of providing help and support! I believe that it is essential not to retreat to a “reservation”. Yes, “special” people need special conditions. But perhaps, once this goal is identified, such conditions can be created, after all? In order to bring this about, a bigger effort is called for from those like us, the parents of children like my dearly loved daughter, with first-hand experience.

Now I no longer view our life as a tragedy. Many things are changing for the better. Masha and I meet interesting people. We see that we are not alone, and some support is now available. I have learned much that I would never have done otherwise - had I happened to be just the mother of a “normal” child. People may well lack a purpose in life unless they are confronted with an insoluble problem. But my life has been eventful, and it is fulfilled. And I have learned a lesson of love. Now I know: you can understand any person - an ordinary one or a “special” one; all you really need is the desire to do so. “Do you really want to understand?” - that is the question.

5

There is now a possibility of vocational training for children like Masha - at the Centre for Professional Training and Social Adaptation in Moscow: please visit www.russia-speciallife.org

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Three Zhenia Leonov As a little boy, Zhenia was good-looking and quiet. Now he is already a youth – not very talkative, but as good-looking and quiet as before. He has a Mum, Lena, who is slender, confident, and high-spirited; a brother, Vania; and a loving Dad. When I see Zhenia and his mother, I feel that nothing can upset their mutual understanding and trust, and the serenity of their love.

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Mother Lena: “A Camel Has Two Humps, Because Its Life Is Bumps” As a child I never imagined myself as a mother. I was thinking about a career. I was sufficiently ambitious and clever. I had plans for the future. While reasonably aware of the necessity of marriage and motherhood, I did not take it at all seriously.

And of course, I never thought that my future child would be any different from other people. That he would be a special child, “one from another planet”, a disabled one.

My first pregnancy was a new country: unfamiliar sensations, unusual manifestations. I did not know what was normal or abnormal, or what to expect. That’s why, six years later, the questions asked by doctors still seemed to lack any sense: “What was the course of your pregnancy?”

“Normal, ordinary”, I would say, being very much aware that I had not the slightest idea what “ordinary” was supposed to mean.

“Did you have toxicity?”

“Like everybody”, was my answer.

“Did your child cry as a baby?”

“Like every baby.”

How could I know, while carrying my baby, WHAT IT WAS LIKE for everyone else? When I got up at night to feed him, how could I know WHAT IT WAS LIKE for other mothers, and other children, and how their life was different from mine, from the life of my family? But the stereotypical questions followed one another – accompanied, as if in revenge, by my stereotypical answers. “Like everyone else”, “ordinary”, I would say, though I already knew that my child was not “ordinary”, not “like everyone else”. That he was growing up not “like others”, and would never be able to become “like others”.

In the first few years nothing heralded future troubles. Of course, he was falling a little behind in his development, because “boys are always a bit behind girls”. But after he turned three - in my bones, I began to feel that something was wrong: a seemingly groundless premonition. He did not pay attention when he was not interested, but for hours could keep on doing things that he liked. “Are not normal grown-ups just like this?” I would ask myself. He had difficulty remembering letters and numbers, but knew by heart his tapes with fairy-tales, and was always quoting his favourite cartoons and films. A minus in one direction was compensated by a plus in another. But he was never curious about other children, or people in general. He did not communicate with anybody. For him, it was all hard work – to learn how to play with a ball, or to use a shower (he could not manage mixing hot and cold water correctly for a long time), or to handle scissors, or to hold a pencil or pen - and many other things.

I was puzzled by the simplest things: how to understand when he was cold or hot, or hungry, or thirsty. Another complex task was to buy properly fitting shoes for him. “Too small?” “Not too small.” “Too large?” “Not too large”. So we bought that pair. He got sore feet. I would try on myself the things to be bought for him, and dress him according to my own notions. I used to make up his mind for him (and got so used 28

to it that I am still doing this). It was I who decided that he wanted something, because no opinion could be forced out of him. “If a child wants something, he will get it by any means.” And what if he doesn’t show what he wants, and is not getting anything by any means? There was no time to wait for him to come forth with his own initiative. He could sit for hours listening to one and the same tape being played over and over again, or watching cartoons on the television. He was driving me mad by his desire to be appreciated, by submissively demonstrating his readiness to follow all my instructions. Very obedient. Very submissive. “Just tell me: ‘I don’t want it!’ Yell at me: ‘Get off my neck!’ Protest, say, at least: ‘I am tired’, ‘I’m freezing’, ‘I want’, ‘I don’t want’!” It was only later that I learned that such forms of expression were the hardest to achieve for an autistic child.

I began to teach him these things myself, not waiting for his own demonstrations. I was instructing him in practical aspects of life: that one needs to use public transport, get dressed, tie the laces of one’s shoes, be patient, hurry, wash one’s face, brush one’s teeth, use the toilet… I instructed him in every necessary thing that I could remember – to eat with a spoon and fork, turn the lights on and off… I was teaching him to read, to write, to count. I was drilling him in answering the questions from school tests. I thought then that this was what they meant by being prepared for school. But as it turned out later, this was by far the least important thing. And even though I succeeded in cramming him with letters and numbers, and drilled him in giving the correct answers to all those tests, they would not admit him to school. But at that time I was still hopeful, and so persisted in my drilling… But when, many years later, I was asked: “Look, will your son be able to live on his own? Can he iron a bed sheet, or scrub the floor?” - I was flabbergasted. How could I have forgotten this?

Somehow I had never thought that he needed to be taught to wash his underwear, handle a steam iron, peel potatoes, wash dishes… How many things I had neglected!!!

Jumping on a sofa or a bed, he would amuse himself by endlessly repeating children’s rhymes or singing songs from his favourite films. That “speech flow” was unstoppable.

“Can your child talk?”

“Oh yes, my child talks a lot. He has no speech problems.”

“So what is the problem then?”

“He ‘does not talk’, I mean he does not converse!”

Why didn’t they send me to a mental hospital?!

My six-year-old son was already teaching me things - in his turn. So I learned the difference between “talking” and “communicating”. (Later I noticed that many healthy individuals could make no distinction between the two, either).

Zhenia was teaching me to be patient, wise and perceptive: only by carefully watching and being very observant could one notice the flashes of his emotions. But it 29

was not easy for me to learn, and it was not an easy task to teach him, either. School for my son was no longer a beacon winking somewhere far ahead – instead, it was gradually disappearing behind the horizon. Ahead there were mental hospital, diagnosis, disability certificate. Autism 6 – this is how the physicians labelled my son’s bunch of idiosyncrasies.

How to describe that period in our life? Despair. Total darkness. Anger.

Helplessness. “Back-to-back against the mainmast, held at bay the entire crew.” 7 That is about my husband and me – the two of us. Because our son is near, but he is not “with us” - he is just sitting and watching. It was lucky to have his younger brother: all the good things were coming from the little one – my hope, my opportunity to rehabilitate myself, to achieve fulfillment in motherhood.

Along the way, we met people to whom I am forever grateful: doctors, teachers, specialists who sometimes gave invaluable advice during a single consultation or just kind passer-bys who took note of my “special” child.

The Moscow Centre for Curative Pedagogics represents a special chapter in our lives - my own, my family’s, and my son’s.

Being aware that in our small town it was difficult, not to say impossible, to find competent specialists or adequate care, I was prepared to go anywhere – if only there was some help available for my son. So I had to travel to the Centre, which was in Moscow, two hours away? But that’s nothing - the most important thing was to get something done. Just give me some hope. Give me faith... …A face like a brick wall - a woman to fear! Try to say something about my child - just try it! Who’ll be the first to dare? I’ll bite off your heads!

A ride on a commuter train, then on the underground. With a clumsy, uncannylooking child, who emitted strange noises. It was only later that I realised all the absurdity of my “defence armour”. But at that time, the most important thing was simply to reach my destination. To deliver my “precious cargo” for a therapy session and afterwards transport him back home. Home is the place to relax, but outside - just hold on.

Six months later, in late February, the tutor, a bit shyly, gave me my son’s work. “For March 8, the International Women’s Day, all the children were asked to do portraits of their mothers”, she explained. On that sheet of paper I saw an angry witch.

Her lips were two thin curved lines, her brows tightly drawn over two small tense eyes. But the hair and eyes were correctly coloured, the face was a neat oval… The tutor had something to be proud of. But what about me?..

“Zhenia, am I really so bad?!”

“You are not so - not bad,” came his stereotypical reply.

6

Autism is a developmental disorder, characterised by its early manifestation (before 30 months), impaired social interaction and speech development, emotional withdrawal, and unusual, repetitive, or severely limited activities and interests. Autistic individuals often avoid eye contact with other people and have difficulty interpreting social cues.

7 A song from the novel Hearts of Three, by Jack London.

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Deep in thought, I took him back home. It was true - I had stopped smiling. We never had any guests, never visited anybody, and never had companions on our walks.

If we did go for a walk, it would be to some remote place, away from people. In fact, I never could remember those who happened to be near me. Quickly, quickly home - to our little trench.

Funny - but neither my son nor I have ever been offended or hurt by strangers.

However, in my family circle, with my parents and my sisters, I wasn’t able to relax.

And at the same time there was the unobtrusive help of my husband’s parents. I do not share many of my mother-in-law’s views on bringing up children. But I am very grateful that she did the baby-sitting, and quite simply was available – and did this without pestering me with instructions and without pity, and never tried to offer unwanted advice or nag me. While we stood “back-to-back against the mainmast”, she was there, at hand – cleaning the swords, loading the guns…

My son’s painting made me stop and think. In such a family a child would remain locked in his shell. Was I indeed wearing full armour, always on guard?

Against whom? Whom was I fighting?

I remember that time with a feeling of defiance: OK, so our child was not well, but we were an ordinary family. We began to buy certain things more often because everybody had them. But the division between “us” and “them” remained. However, now the category of “them” no longer applied to the entire world – only to the State bureaucracy…

At the Centre they were tutoring not so much my son, but me. They coached me in simply loving him – the same thing that my son was doing. But the tutors were more competent, they sometimes would just halt me in my frantic activity: “I forbid you to do your son’s homework. You mustn’t do anything with him. Have a rest.” And then they would show me his drawings, tell me – who could have imagined it? – that he could do this, and this, and that into the bargain. My confidence in his abilities was growing. Hope was growing. And so was trust in my son.

We started school. Life began to take a more ordinary course. But the teacher I disliked at first sight: she was looking at my son with pity mingled with contempt.

Perhaps I was just imagining things? But her arrogance, lack of desire to teach him…

“Your child gets tired very quickly. Three lessons of 40 minutes each is too much.

We’ll have two lessons, 30 minutes each.” (But at the Centre he would study for three hours - and never wanted to leave!) There were no other teachers, so we had to put up with her ways. However, mutual displeasure was ever increasing. “Your son is very difficult.” “But you have just never seen truly difficult children!”

Thank God for a lucky chance - now he is taught by another teacher at another school.

Sometimes I would have this thought: perhaps I should not run around so frantically, it all will settle down in the end? But, like a top once set in motion, I just kept spinning and could not stop.

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However, things were gradually becoming more relaxed. Now I had some spare time. And I began to realise that my son was not my entire life. I got to know other families like ours. Then, accidentally, I met Mishka. A year older than Zhenia, that boy looked amazingly like my son when he had been 6 or 7 years old – before he had started his therapy. But Mishka was still at that level – out starting-point. “So, they truly did some good, those long trips to the Centre: I have been doing the right thing!”

I thought.

When one sees a child every day, it is difficult to trace all those tiny everyday changes. The perspective only appears later, when certain moments are recalled – like mileposts along a road, marking the way left behind. So now he is capable of expressing his desires: “I want it.” But nearly always he can be talked (or forced) out of fulfilling his desire: “You do not want it very much!” “No, not very much”, he agrees. Now his reading has become easier. And now I hear: “I do not want this!” But again, he can be talked out of it… No, not anymore! “I do want this”. And he gets his way!

He is incredibly stereotypical. All the rules of everyday life, established by him, must be followed to the letter. One step to the right or to the left from the set path – don’t dare even to think about it! Now he finds someone to be attractive: “Masha is so beautiful!” “Do you like her?” “Yes.” At last, he can be left at home alone, with a warning: “Do not leave the door just like this, unlocked. Here are the keys.” And on coming back you see that the front door is locked, and he has gone to his grandmother.

Then, finally, he can pour his own tea. And now he comes to me and says: “I have made some tea for you.” “Thank you, son!” “Uh-hum, thank you”, comes his slurred reply. But his speech! Where is that verbal torrent of ten years ago? Jamming together sounds and words, he repeats the same short stereotypical phrases, over and over again in similar situations. If faced with the need to make a choice, he starts thinking and withdraws into himself: “But I know it!” It means that he has not yet worked out the reply, put it into words and learned it by heart. Therefore I nearly fell over backwards when, seeing that we were going out shopping, he suddenly asked, without any prompting: “Are you going to buy any crisps?”

“What kind?” Dad instantly made his task more complex.

“Bacon-flavoured,” came his clever reply.

“What if there aren’t any?” I added yet more complexity.

“Then dill-flavoured.”

“All right,” we chanted in unison, exchanging glances.

“Gentlemen of the jury, the ice has started moving”, was the Great Schemer’s 8 favourite saying. We have still a long way to go before the ice really starts moving, but spring is already in the air…

8

Ostap Bender, a witty schemer, the central character of the widely popular satirical saga by Ilia Ilf and Evgenii Petrov, comprising two novels, Dvenadtsat' stul'ev (The Twelve Chairs, or Diamonds to Sit On, 1928) and Zolotoi telenok (The Golden Calf, 1931). This was Ostap Bender’s usual saying whenever he felt that his next scheme was going to work.

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‌Not so long ago I read that the human brain keeps developing right up until the moment of death. So there is still a long way ahead. Run, horse, run‌

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Four Lyova Virin His mother Lena is my closest friend. Short and plump, with a tremendous zest for life, she is high-spirited, active, and loud. Lyova, too, used to be on the short side, but now he has overgrown his Mum and is a big and sturdy young man, who takes himself very seriously. Lena says: do not expect an orange from an aspen-tree! Both she and Lyova are talented and good people and faithful friends, both enjoy lying on a sofa immersed in a thick book, love good food and are very reluctant to do things that they do not really want to do.

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Mother Lena: A Person Who Enjoys Life Lev (we call him Lyova) is the third child in our family. Therefore, when he was born in May 1983, I realised pretty soon that he was not quite all right. At three weeks, he was diagnosed with perinatal encephalopathy 9. I remember very well feeling stunned, unbelieving, expecting to wake up next morning and see it all dissolving like a bad dream…

And so began our pilgrimage from hospital to hospital…

As a baby Lyova was very quiet, never cried and did not react to anyone. I was not even sure that he really distinguished me from other people. However, once when I had to leave him with another person for one night, he kept crying and could not sleep until the morning. So I understood that, after all, I was a special person for him…

Lyova was about eight months old when they said it for the first time: he had childhood cerebral palsy 10. The affliction was severe: paralysis of all the four limbs tetraplegia 11, aggravated by “readiness for convulsions” 12 and “hypertensivehydrocephalic syndrome” 13... I felt as if a huge brick building, twelve storeys high, had just collapsed over my head…

And I recall the perpetual refrain, throughout all those early years: “Give away that child, you are still young, you already have two healthy ones, why should you need that lifelong suffering…"

But how lucky that we started treatment so early on! And that his body had a simply enormous potential for rehabilitation…

When he was one year old, we had our first victory: he managed to put a cookie into his mouth with his own hand! Luckily, we found a very efficient masseuse, and she put Lyova on his own feet at about 15 months. It was then that he also sat up for the first time. But for many more months he was unable to walk independently – he could only walk with support; he only managed to walk without support when he was nearly two. But he did not communicate with us – he seemed not to respond to human speech at all. However, in the street he would always carefully walk around every puddle...

9

This term, used in Russian medical documents, literally means “brain damage of unknown aetiology as a result of birth trauma” or “general weakness of the central nervous system due to birth trauma”.

10 Childhood cerebral palsy is an illness which develops as a result of damage to the brain occurring prenatally, during birth or during the perinatal period; it is characterised by various degrees of impaired movement, mental functions and speech.

11

Tetraplegia, or quadriplegia, a form of paralysis affecting all four limbs, although not necessarily involving total paralysis or loss of function.

12 A term frequently applied in Russian medical practice to describe certain specific signs pointing to the probability of convulsions.

13 This diagnosis is applied in Russia to describe an abnormally large quantity of cerebrospinal fluid inside the brain that results in an increased intracranial pressure. It may be the consequence of an obstruction in the normal cerebrospinal fluid circulation, or of its overproduction.

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How many distinguished doctors looked at him!

When Lyova was two, one eminent specialist labelled him “an imbecile”. 14.

They would say: it is useless to teach him anything – all he needs is adaptation.

His highest achievement, perhaps, would be to acquire simple skills of caring for himself. But how could I believe it? He looked at me with clever, alert eyes, and was so full of joy! Even in his earliest photos he is easily recognisable by his smile...

The first time I heard something positive about Lyova was when he was 4, and we took him to Svetlana Iosifovna Mayevskaya, a brilliant “logopaedist” 15. After taking just one look at him, she said: “No, this is not oligophrenia. He is too badtempered for that.”

All those years since his birth it was incessant work. How much Lyova had to go through! At first – daily massage until he was two-and-a-half years old, then exercises, speech therapy sessions… They would give me assignments for a month ahead…

At that time he was usually quiet, always smiling, and serene – unless someone dared to trespass on his territory. The first and foremost of his words was “No”. But this runs in the family...

At four, Lyova began to have convulsions. It was so frightening. He would scream, writhe and look at me with pleading eyes. Luckily, the attacks were short. And there were minor seizures – petit mal, when my little one would fall down every minute or drop his head on the table! His chin bears a characteristic scar – his mark for life. Happily, when Lyova turned nine, a new drug appeared – depakin, and petit mal disappeared.

Lyova learned to talk at about four-and-a-half years – through reading. And since then he has been reading incessantly! And also talking …

His speech has always been slurred, slow and drawn-out. By now it has greatly improved, but even I cannot always understand straightaway what my son is talking about. And he has always been as stubborn as a whole herd of mules.

And very touchy. His mind tends to latch on to things, and once it is set on a particular track, Lyova will not be 14

Imbecility (a term applied in Russia to describe medium-degree mental retardation) is characterised by limited vocabulary, lack of abstract thinking and inability to control one’s activity.

15 A logopaedist is a specialist who deals with the correction of speech sounds, disorders in writing, reading and the ability to create any forms of mathematical operations.

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easily distracted.

Our elder son was seven-and-a-half when Lyova was born, and his sister is five years older. The elder children, who grew up very quickly because of Lyova’s illness, loved him (and continue to love him), but they were not very keen on communicating with him. He was a burden, a responsibility for them. And to tell the truth, it was seldom that any of us had enough time and patience to listen to everything that Lyova wanted to tell us. But he loved talking and communicating with people. Perhaps that is why he has grown up to be so importunate, and has also created a whole imaginary world of his own, where he is the king, the champion, the genius detective, and so on.

In short, the most brilliant and beautiful person.

I am a mother of three children, and the most important thing that I finally seem to have learned is that every child is absolutely unique. And Lyova is a very special person. He shares many of my own traits, but he is not at all like other children. And other children always went after him, chased him away. Once, when throwing stones at him, they even injured his eye…

Of course, there is no place where children like Lyova can be educated.

At first, when he was seven, Lyova attended some classes at the Centre for Curative Pedagogics. However, the group sessions were no good. But at the same time he was found to be intelligent, and even capable of logical thinking. They began to prepare him for school.

At nine, Lyova started school – it was boarding-school No 17 for children with cerebral palsy. I picked him up every day after the end of classes: because of his seizures he could not stay overnight and, in any case, to tell the truth, I did not want to leave him there overnight…

He had great trouble coping with the mainstream curriculum. He is very slow, and his fingers cannot work properly. His handwriting needs deciphering. But the main problem is, of course, his behaviour. Nevertheless, he managed to stay there for five years – the teacher happened to be very good: she was calm and patient. But once (it was during his fifth year there) she left the children on their own for some time, and while she was away Lyova was beaten up by the whole class...

So, at the end of that school year, we had him transferred to a special education school. The new teacher was simply charming, and they got on very well. But the special education curriculum had been already mastered by Lyova, and so he had nothing new to learn there.

But when he turned 18, it was time for him to leave that school, too. And we were at a loss as to what to do next. The boy had grown up…

It is very difficult to treat Lyova as a grown-up. I am doing my best, but the result is rather poor. As a child Lyova was certainly different from other children, but to a much lesser degree than he now is different from other adults.

Lyova, of course, dreams of getting married and having children – his successors here on earth. But we’ll leave that for later, for now let it remain just a dream. At present, although he is a grown-up man, he needs to have his day planned 37

for him by someone else. Otherwise, he will just stay at home, lie on the sofa, eat and put on weight – although, thank God, he will do other things as well. He will also spend his time reading thick books, and losing himself in reveries about an imaginary world and his own grandeur.

Is it such a bad thing? I do not know. But if he is not pushed out into the real world, he will forget how to get on with others, and lose his ability to communicate with other people, to take them into consideration. And one cannot spend one’s life lying on a sofa…

Lyova is taller than me, heavy and passive. I pull at him and drag him out – to meetings of the Faith and Light Group, to the printing workshop where he learns how to make little souvenirs – writing-pads and postcards, and to outings and parties …

Although it is a hard job to drag him out, actually he wants very much to have a life of his own, he has a sense of his self-worth and of mission, and he wants to make himself useful.

However strange it may sound, Lyova has a penchant for intellectual exploits.

Had he been born healthy, he might have become a scientist. And nowadays, when he has not returned from his occupational therapy sessions, I know where to look for him: at the bookshop or at the library - where, by the way, he applied for and got a membership card all on his own.

Lyova takes everywhere with him a very heavy bag filled with books on history. This is his world – the inner world, where he is happy.

But it has turned out that he is happy not only in his inner world. At the CCP’s printing workshop, where my son goes twice a week, he also feels happy! His fingers are not deft at handling paper, and he cannot carry out all the required operations - but what really matters is the people around him. Lyova is well-known and loved there. He is an important participant in that community. He takes his responsibilities very seriously, and loves this activity. Despite his love of domestic life, Lyova is always happy to go and see his tutors – Nadezhda Lvovna and Lyolia. It seems that nothing can keep him away – not even bad weather or illness.

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Lyova is a peculiar but, I believe, very good person. He loves his friends, and would sacrifice his life in order to protect them. He loves life and tries to make sense of it, pondering its meaning. He wants very much to be needed and loved. He is warm.

And I love him very much indeed.

Of course he is difficult. Of course he thinks and behaves differently from others. And I would have given anything to make him a normal person.

But I live together with Lyova, and around us there are lots of other children.

Big and small, with a whole spectrum of problems. Not so long ago I came to the realisation that a human being is something more than intellect, abilities or even talent.

And I began to question how we should measure our usefulness to society, which is seemingly our duty. I believe that Lyova’s kindness and his smile are not such small things, after all…

Drawing by Lev Virin: “The Prelate: Pope Lev I of Rome”

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Five Milana Derevyagina Milana is a serious and rational young woman. She prefers to be with adults rather than with children. Her Mum and Dad are always by her side, and they take it in turns to escort her to therapy sessions. Her family’s love is her shield.

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Mother Asya: The Hardest Thing, As It Turned Out, Was to Accept My Own Child I want to be sincere in sharing a story that might be helpful to those destined to cope with a situation resembling my own.

My name is Asya. My husband, Vladimir Derevyagin, and I have three children. Our eldest boy Boris was born in 1975, and from that moment my whole life acquired a new and special meaning. At that time I worked as a software specialist at a big research centre, and was thinking of writing a dissertation. My husband was a fulltime postgraduate student, so we did not have very much money, but I was the happiest person alive! And although it was a hard job raising a son, I was convinced that he should not grow up as an only child. My husband and I decided that three years would be the ideal age gap between our two children.

Of course, we very much wanted a girl for our second child, but my mother asked – in the event that we turned out to have a second boy - that we name him Mikhail, after her brother. And so on May 5, 1978 Misha, my second son, was happily delivered. But all of a sudden the midwife shouted that there was another baby! No one had mentioned the possibility of twins during my pregnancy, but it was the wonderful truth! And a tiny, blue, very pretty girl emerged. She cried at once – and so, considering myself by that time to be an experienced mother, I decided that the worst was over…

However, four days later I was informed that the girl had cardiac pathology.

Now she had to be transferred to the A. N. Bakulev Scientific Centre of Cardiovascular Surgery. Two more days passed, and the cardiac function of my baby daughter became normal. After that she was taken to Hospital No 13, to be kept in the department for prematurely born babies. And my son Misha and I were discharged from the maternity hospital.

Three weeks passed before I was allowed to visit my Milana (it was her father who chose that name for her: from “milaya” - “a darling one”), and I saw that dollylike creature. Her weight was only 1800 g. When they succeeded in bringing her body mass up to 2 kg, she was discharged and, by way of a valedictory, they told me that the baby was healthy but very small, so I would have to pay her more attention.

Exactly two weeks later Milana started her blood-freezing screams – day and night. The doctors suggested that it might be an ear inflammation. She was given a course of antibiotics, but did not feel better. So I found a paediatrician in private practice, who identified an orthopaedic problem.

I am not going to describe here all the details of our daughter’s medical history.

My girl could not sit up or stand up, and she was 10 months old before they pronounced that diagnosis, terrible as a court sentence: childhood cerebral palsy.

The prognosis was grim. Every two months I would spend some time at a hospital with Milana, who was prescribed massage and medical treatment.

When Milana was two years old, I learned about an acupuncture practitioner, who was said to do wonders. His name was Lu Din Sen, and he worked at one of the city hospitals in Makhachkala. Without hesitation I embarked on the first of our 41

journeys there, to the North Caucasus, with my daughter who at this time could still neither stand nor walk, and had not yet started to talk. The therapy had visible results: after the second course Milana took her first steps. Of course, not everything was as we would have liked it, but anyone who, like me, had been living for many long months waiting for those steps, would understand how victorious I felt!

Between the ages of two and four years, Milana had 10 acupuncture courses. Then there was a break, and later, between her fifth and sixth years, Milana’s father made another four journeys to Makhachkala with her.

At the age of five, Milana began to put words together in sentences, and so we were now able to place her at a special kindergarten.

I should like to add that during all that time our girl was surrounded by her family. Her brothers’ feelings for her were very tender, and they took great care of her.

But every time that we “went out” was torture for me. The curious glances of strangers irritated me, and I wanted to cover Milana with my hands - or run back home, to our haven of love and mutual understanding.

It was very hard for me to get reconciled to the fact that Milana did not walk like other children and was significantly backward in her development. Her every little step upward cost me giant efforts. I taught her to distinguish colours, and to recognise letters. Gradually, and with difficulty, Milana began to master her reading syllable-bysyllable, and acquired some rudimentary writing skills. All this got on my nerves terribly, sometimes I nearly screamed with pain, and there were occasions when I lost control and punished Milana, although it was not her fault at all.

Then came the moment when I realised that the strain of teaching my daughter was turning me into a shrew, and so I decided to take a break. By then she was already studying at boarding school No 17, where she was following a special education curriculum. Although the atmosphere at the school was excellent, Milana could not grasp everything that she was supposed to learn in class. She needed one-on-one tutoring, but we could not afford to hire a private tutor.

At that time we also had to make a very serious decision concerning surgery on her right leg.

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In January 1991 Milana underwent two successive operations. The results were far from perfect, but there was some noticeable improvement in the leg’s position. We could at last discard her orthopaedic shoes and make do with normal footwear.

However, psychological problems were mounting. Every passing year made it increasingly clear that no efforts on my part would pull Milana up to the norm. The hardest thing, as it turned out, was to accept my child just the way she was. Thus began a very difficult period of my life, when I had to break through many barriers inside myself.

It all coincided with the moment when, on a friend’s advice, I happened to go to a meeting with Jean Venier 16, the founder of communities for the mentally handicapped, their parents and friends. It was in May 1993. I saw and heard Jean, and it was like a godsend. I felt that this man knew all my troubles and was speaking directly to me. Every word had a profound healing effect on my long-suffering soul.

But after the meeting was over, I found that everything that had seemed so obvious and easy while I was listening to Jean could be applied only with great difficulty to my real life. However, what had been essential to understand was that in the eyes of God our “problematic” children were the dearest and best-loved ones, and we had to learn from them how to be open, and not to feel uneasy about the looks and attitudes of the people around us.

And then, finally, there came a day when I truly realised that my Milana and I were an indivisible whole. I stopped beating like a fish against a crust of ice overhead in my attempts to overcome every little obstacle, and became much more selfconfident.

At that very first meeting I went up to the person who was translating Jean’s words and asked for Milana and me to be accepted into their community. The hall was filled with people whose eyes shared the same - very special - expression, and at once I was filled with the desire to be near them. Thus, in September 1993, we joined the Faith and Light Group.

Milana likes the atmosphere of these meetings very much, but still it has taken a long time for us get used to it all. Despite numerous psychological difficulties, I was well aware that this was the only place where we and our children could hope for special attention and care.

In 1996 Milana finished school and was enrolled in the ceramics group at the rehabilitation centre in Altufievo, a district in Moscow. It was very important for her to continue to live amongst her equals and to learn to deal on her own with various emotional problems and ordinary everyday situations. I cannot say that the four years spent within the walls of that establishment were particularly productive in terms of education, but my daughter now had a world of her own, and this was essential.

In the same year, 1996, it was suggested that we start something new: horse therapy. It was all quite amazing – to ride a horse at the hippodrome, where the staff

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Jean Vanier (born in 1928 in France) is the founder of L’Arche, an international organisation which creates communities where people with developmental disabilities and those who assist them share life together. Vanier co-founded an international support movement for families of people with disabilities – “Faith and Light”.

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were doing their best to rehabilitate our children. The horse therapy sessions were continued at the summer camp at Balabanovo, with its unique spirit of warmth and creativity, and which our children simply adored. But later on the organisation split in two, and then into three separate branches. In addition, the fees charged for the therapy sessions became too high for our family, and so we discontinued it. So this chapter in our life also closed.

But I have overlooked one more, very important aspect of Milana’s life.

Back in 1995, at the boarding-school where Milana was then studying, there appeared a young woman called Olga, who started to teach the girls a creative tapestry technique. With a special needle, a woollen yarn had to be pushed through a stretched piece of canvas to form rows of loops according to a certain pattern, so as to produce in the end an attractive fluffy picture. At first I did not believe that Milana would be capable of mastering this craft, but gradually she gained both skill and confidence, and her work became increasingly accurate. We set a goal – to make gifts for all the people dear to our family. And so far, Milana’s two hands have produced 75 pieces of tapestry! They can be made into pillow-cases, or framed and hung on walls like paintings. Milana loves it.

At present, our main priority is to find a place where our problems can be understood, and where Milana can have an opportunity to work in a team. She needs people around her and an occupation, to feel useful in this world.

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Six Tanya Topchan Her Dad is a father, a mother, a protector, an observer, a healer, and her most devoted friend – all in one person. Tanya talks – telling him something, or asking a question, or explaining… Father Sasha looks at her lovingly, with delight.

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Father Sasha: Tanya and I – We Are Happy Together Tanya was born in January 1988. I was then 42, my wife – 29. The pregnancy was without complications, the only negative factor being my wife’s chain-smoking.

The birth was at the expected time, but my wife’s labour was difficult and protracted.

The physicians left my wife unattended for a long time. Then forceps were applied to the baby.

On the fifth day our daughter was transferred from the maternity hospital to the Children’s Clinical Hospital No 18. Her mother had to stay in hospital for another three weeks or so.

At the children’s hospital they told me that this kind of trauma would require treatment for nearly six months. And about a month-and-a-half later we took Tanya home.

The doctor and nurse from the district polyclinic visited us punctually, in accordance with the established schedule, and made many useful recommendations.

However, they overlooked the fact that the baby’s head was quickly growing in size, while the baby herself showed few signs of progress – she was just lying very passively and moaning all the time.

Tanya was properly diagnosed by a private paediatrician whom we invited on our friend’s recommendation. Stepping into the baby’s room, she said at once: “Hydrocephaly17. Bad business.” This was the first big shock we experienced after our daughter’s birth. Owing to the accumulation of fluid under our baby’s skull, its diameter by that time had reached adult dimensions – 55 cm.

Once again, acting through friends, we got an appointment with a good neurologist, and she quickly arranged admission into the neurosurgery department of Children’s Clinical Hospital No 1. At four months Tanya had her first surgical intervention: a shunt was inserted to remove the excess fluid and relieve the intracranial pressure. The cerebrospinal fluid from our baby’s brain was shunted through a plastic drain-tube into her abdomen to be absorbed in the inner layer of the peritoneum. After the surgery Tanya began to develop quickly, but precious time had been lost, and the damage to her brain had been very substantial.

At 15 months there was a new disaster: her peritoneum was no longer absorbing the excess fluid, her tummy was distended, and she was running a continual high fever (but even then our daughter remained smiling and active!). Tanya was once again admitted to Children’s Clinical Hospital No 1 and spent more than four months in its various departments.

Time went on. No tests could identify the cause; no treatment yielded any results. Our daughter’s condition slightly improved only after a small hole was made in her abdomen through which the excess fluid could bypass the peritoneum and flow out.

17

Hydrocephaly, also known as hydrocephalus, - an abnormal build-up of cerebrospinal fluid in the ventricles of the brain.

The fluid is often under increased pressure and can compress and damage the brain.

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This was a very hard period: Tanya was lying exhausted, her body filled with various drugs. Her helpless mother was always at her side, while I was trying to get any effective help from the doctors. And once again our neurologist, with her rich professional experience, proved invaluable. (Later on, she followed Tanya’s progress until the girl was 15 years old, and it can be said that this doctor literally set Tanya walking on her own feet.)

After about three months they began to prepare us for Tanya’s discharge from the hospital. So I had to explain to one of the head physician’s deputies that he was indeed taking upon himself enormous responsibility by discharging a child who was virtually unconscious. After that they relented and let us stay at the hospital for another month-and-a-half, until Tanya’s condition somewhat improved. But the fluid kept coming out through the open wound, and it was obvious that Tanya would have to be hospitalised again after a short period of rest.

We went to our small country-house near Moscow. Tanya’s mother spent a lot of time with her, engaging her in various activities. Tanya was resting – and progressing in her development.

Two months later we went back to the hospital – as it turned out, this would be for yet another half-year stay. Our daughter had another shunt placed into her body.

She was then two years old, and had spent one whole year of her life in hospital.

After that second intervention we embarked on an intensive programme of rehabilitation. Mama and Tanya read together, painted, moulded and played active games. Our daughter was cheerful and loving, but very far behind other children in her development, and especially in intellectual abilities. It was then that it was suggested for the first time that we give Tanya away.

Nevertheless, in March 1995 we had a successful interview with the admission board of a special education school, and seven-year-old Tanya was admitted to the first form. By this time she could already read quite well, although her motor functions were severely impaired. This was the time of relief and hopes.

Then a new disaster hit us out of the blue: Tanya grew up and started menstruating, but this coincided with the onset of severe and very frequent (up to 15 times in 24 hours!) epileptic fits, with convulsions and loss of consciousness. Anticonvulsive medications helped to reduce the number of daily attacks to three or four, and make them less severe.

Despite the fits, on September 1 we took Tanya to school, to begin her next school year. Tanya could already read quite fluently and understand the content of what she was reading, and 47

was able to solve simple logical problems (although we had once been told that she would be totally incapable of logical thinking). But our daughter began to display teenager “negativism”, and so six months later we had to switch her to a home education programme. Her resulting loneliness gave rise to emotional problems.

These two problems – epilepsy and lack of socialising – were the hardest to deal with, and have remained so to this day.

Our search for an effective anti-convulsive therapy lasted for nearly a decade.

Tanya stayed at various medical institutions, and was admitted three times to Children’s Mental and Neurological Hospital No 6, but none of the drugs prescribed to Tanya was beneficial and, moreover, she suffered from toxic side effects.

During all these endless years my wife became weary and irritable with Tanya, and finally got a job. (Since then, Mum has lost interest in her daughter, and this is the source of a lot of suffering to us). Thus, in January 2000, I had to quit my own job, and so became a full-time Dad. First of all, Tanya’s epilepsy had to be dealt with. I started to keep a detailed journal, recording the number of fits, the situation preceding each onset, external symptoms, heart rate, pulse, blood pressure, weather, subjective sensations, stools, urine … And soon a distinct pattern emerged: the fits were always preceded by certain, quite evident cardiovascular changes, which would became quite noticeable before the onset of each fit. There would be an upsurge of heart rate and blood pressure; her face would become flushed or pale, with bluish patches under the eyes, etc. Perhaps the fits were the result of a cardiovascular disorder?

I began to search for an efficient cardiologist. Tanya was admitted to the neurology department of the Scientific Research Institute of Paediatrics and Paediatric Surgery on Taldomskaya Street. No organic defects of the cardiovascular system were found; instead, without making a thorough check-up, they described Tanya’s fits as “panic attacks” and decided to make an adjustment to her anti-convulsive therapy. The result was a succession of severest fits. My daughter and I were both terribly shaken.

After reverting to her previous medication, we had to wait several months before she returned to her “normal” state.

When Tanya recovered, I continued my search for a cardiologist. At the Bakulev Institute I was advised that functional disorders of the cardiovascular system were successfully treated at the Institute of Paediatrics of the Russian Academy of Medical Sciences on Lomonosov Avenue. There, they administered a course of treatment supplementary to the anti-convulsive therapy, and after six months of this combined therapy, in June 2003, her convulsive fits disappeared, and the attacks without convulsions became ten times less frequent! We had been climbing towards this success for 8 years…

And there was one more lucky chance… At her school, one of the mothers told me that “Geront”, a non-governmental association for disabled persons, sponsored a free-of-charge rehabilitation group for teenagers. At the first opportunity Tanya and I began to go there. The importance of that group for Tanya, who for many years had

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been deprived of the company of her peers, can hardly be overestimated. Every group meeting makes Tanya tremendously happy.

As before, Tanya continues with the anti-epileptic therapy (now the fits are rare and very mild) and takes courses of medical treatment periodically prescribed by the gastro-enterologist, nephrologist and cardiologist, in addition to routine checkups. But now we are surrounded by understanding people with whom we can socialise, and Tanya loves them.

Recently, Tanya has changed a lot: she is now calmer and more adequate in her attitudes. Now she does not only talk herself – she is getting into the habit of listening and responding to others. She has developed an interest in her peers (previously, she was interested only in grown-ups), and she has begun to work as part of a team. She cannot wait to attend this “club” of hers (although she is perhaps the least “adapted” of all the children there), or to visit her beloved summer rehabilitation centre at Kratovo.

Our first achievements are a great joy. My Tanya now knows quite a few things, and understands a lot. She is a kind person and curious about life, and she is always smiling. Usually we get along excellently, and we are happy together!

But I am already 60. No one wants Tanya - except me and a handful of good friends. So what will happen now?

During my years of search, I became convinced that one can expect help mainly from those who are grappling with similar problems. Other people simply do not understand what our life is like… My greatest hope is that the joint efforts of us, the parents, and of the “God-inspired” people who instruct and help our children will finally succeed in providing an answer to that nagging question…

I know that it will all require inordinate determination, inventiveness and perseverance. But if we won’t do it – who else will?

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Seven Kolya Filippov All the members of Nikolai’s (or Kolya’s) close-knit family are artists and architects: his mother, father, and grandmother; and his younger sister Anya is studying to be an architect. Perhaps there are other artists in his family whom I haven't met. And I must say that, having known Kolya since his early childhood, it’s obvious to me that he is also an artist, a budding one. Despite all the difficulties he is facing, Kolya's outlook on life is quite unique and creative.

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Mother Masha: My Beloved Boy I have promised to write about my son and myself - the mother of an autistic boy, who is already (goodness!) 20 years old! But this is so difficult; it has been nearly a lifetime...

Suppose that the anguish comes back – something that I have somehow managed to endure, exorcise, reassess, live through and leave behind, push under and transform into habitual numbness...

So what was it like in the beginning?..

In the beginning I married the man I loved to distraction, and I wanted to have him continued in another being, our own child: to give birth to a son.

An easy, uncomplicated pregnancy, joyful anticipation – and here is the midwife, holding in her hands the most beautiful newborn baby – my boy! Only later – three years later, to be precise – I would start turning over my memories, day by day, hour by hour, trying to recall every minute detail of my pregnancy and delivery: where and how had I made any mistakes, what had I done wrong and when – so as to let down that most precious being, for whom I expected only a joyful and happy life?

Until he turned three, Kolya was just a typical smiling infant, whom I seemed never to let out of my hands – it pleased me so much to have that baby! That delightful milky fragrance of his golden curls, his joyful bouncing on the sofa while holding both my hands; he embraced me so trustingly with all four limbs when I picked him up…

That’s why I called him “my tiny koala bear”… Of course there were certain things that troubled me – but only me, not our district paediatrician. What, he doesn’t suck your breast properly? It means the time has come for you to feed him from a bottle…

He still has trouble controlling his head when picked up? He just needs massage - I’ll put you on the waiting-list, and in three months your turn will come… In the meantime, we’ll place your child in the number one health category - he is a good boy, started walking exactly at 1 year! You should not worry so much…

During my son’s second year of life I began to notice that he was falling behind in language development. It all seemed so strange – his “babbling” period had occurred at the appropriate time, some words like “mama”, “ka” (meaning “what, which”) and “baboo” (“a car”) had appeared; and then Kolya began to reproduce nursery rhymes – at first just short bits, but soon he could recite by heart an entire long poem - “Fedora’s Troubles” or “Barmaley” 18. However, he could say nothing on his own, and had no words to express himself. If he wanted something from us, he repeated our words instead of using his own. Thus, he would inform us: “You want a drink!” or “You’ll go for a walk!” But the older he grew, and the more complex his personality became, the less these ready-made clichés would suit him. I imagine very vividly how gradually there began to grow all around him, and then closed over his head, an impenetrable concrete dome, enveloping him in loneliness and incomprehension, walling off the real sky and the world of people, and leaving us, his 18

Two children’s poems by famous Russian author, K. I. Chukovsky.

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parents, on the outside.

But all this would only become clear later on - a few years later, after I had read numerous books on autism… At that time, though, we had nobody to compare him with – Kolya was our first child…

When Kolya was two, we decided to have another child. I had always wanted two children, and I believed that it would be better for them to be close in age, and easier for me to bring them up together. Also, I would not have to live twice through that “baby period”. And Kolya was such an easy child! My grandmother took him for walks – and in the park he gave her no trouble at all, never climbing where he was not supposed to, never running away. He would just stand in front of the iron fence, looking through it at the passing cars and repeating over and over again: “Baboo, kaka baboo!”

He was nearly three years old. And then, in the last month of my pregnancy, when Kolya’s baby sister was due to appear, my boy began to suffer from nightmares.

One night, as always, I put him to bed. He went to sleep quietly, but very soon I heard his loud terrified screams. “What’s the matter, sweetheart?” “Wolves! You are scared of wolves!” I though that I should take this seriously. As a child I had also had nightmares, and I knew how much he was suffering. And so we went to the first specialist in Kolya’s life. It was a neurologist. That was how we learned for the first time that there was “something wrong” with Kolya. There followed a sequence of consultations with professionals in various medical fields, and we began our search for a “wizard” who would prescribe a “wonder pill”, specially created for us… Then our darling boy would finally be cured, and begin to talk like all his peers, and this year in our life would be forgotten like a bad dream!

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But Kolya is already four, and he still does not talk to anyone… Only if he needs something desperately, will he ask for it by using a peculiar word-formula – composed of our words, not his own. And he has not yet learned to use a potty! But the district neurologist and both Kolya’s grandmothers are convinced that this is entirely my fault – I should have been more insistent in training him! But I did try hard! I even began to scold him. Didn’t the neurologist tell me: “It is you who have spoiled your kid - and now you pester doctors with your visits! Look, how big he is, he understands everything! Tell me, why is he running around my office? He cannot behave himself at all! You should be stricter with him, or later you’ll have serious trouble handling him!

Scold him, force him do things!” So it is all very easy, after all! This doctor is an experienced one, she has been working all her life at children’s polyclinic, and Kolya is my first-born, and I am so inexperienced… Of course I am a bit wary, the recipe seems too simple: scold, punish – and your child will become the person he should be (one wants to add: Soviet-style!). But it has been my own Dad – Kolya’s grandfather who advised me to consult her; he is convinced she is a good doctor. Perhaps the grandparents are right: it is I who am to blame, it is I who have neglected this child...

But I soon noticed that my angry yells were only making matters worse. Kolya still failed to master his potty skills – instead, he was now scared of me… No, I mustn’t do this! So we’ll play horses. Let him ride on my back; let him feel that Mum isn’t a scary dictator – and that he is an important and respected person!

That was my first lesson in “getting inside his skin” - trying to understand his inner self. If he cannot explain himself to me, I must try to feel the way he feels. I did not want to repeat such gross mistakes in the future…

What is it like to be autistic?

Probably it resembles the state of someone placed inside a huge glass vial standing in the middle of a crowded square. He cannot climb out, and no one can hear him. People are all around, they knock on the glass walls, try to speak, but he can neither answer nor get out meeting them...

Or, perhaps, it is more like someone sent to our planet as an envoy from another world, equipped with all sorts of information from encyclopaedias (Kolya’s favourite reading-matter); only they had forgotten to train him in elementary everyday skills – say, how to ride on a bus or talk to people in the street…

At this point – “from the distance of all those years” – I have come to the realisation that perhaps Kolya’s autism was not very severe: he has always been a very kind, tender boy, he liked to be played with, to be held in somebody’s arms, he loved to listen to poetry being read to him, and to recite it…

My husband and I took note of our boy’s amazing memory: he was able to memorise everything, at once and for good. So we decided to put it to good use. We believed that sooner or later this passively stored knowledge would be transformed into some sort of activity. And I began to teach Kolya letters and numbers. It was wonderfully easy.

Once Dad was looking with him at pictures of trains and cars (Kolya’s first obsession!), and gave him a pencil and a sheet of paper. And it turned out that Kolya was a phenomenal draughtsman. He at once produced a drawing of a train, in perspective! At four!

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At last there appeared one ray of sunshine in our darkened life: evidently, this boy’s intellect was intact.

Apart from everything else, drawing became for my son a language in which he was able to talk to others, a means of exercise, and a way to express his feelings. It should be said that a drawing, for him, was never “a thing in itself”, and he never aimed at creating a completed work of art. As a rule, he would draw “like an addict”, very quickly, and would complete several drawings in one sitting. Here is one typical example. We were visited by yet another private doctor, a lady who – having turned out to be rather unpleasant - handled Kolya in a way that, from his point of view, was totally unacceptable. After she examined him, we – the grown-ups - went to the kitchen to have some tea and to discuss the situation, leaving Kolya alone in the room.

When a little later I popped back to take a look at him, I saw a drawing on a pillowcase of a horrible face with huge teeth, which remotely resembled that of our guest.

And then we had one more consultation with a “medical genius”. With fouryear-old Kolya, we had travelled across the city on four types of public transport, and we were now sitting in an office at a big paediatric hospital on the outskirts of Moscow.

This doctor had saved many lives, and finally he was going to help us – and we would become like everybody else! Of course, it would be some rare medication.

We’d have to make efforts “to get” it, but never mind, achievements are never easy!

The doctor asked some questions (how many similar questions, put by other doctors, I had already answered!) about our son’s birth, his behaviours, and then suddenly pronounced a monstrosity - something that I simply could not get into my head:

“The Archer Fish”. Drawing by Kolya Filipppov

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“Your son has the schizophrenic syndrome”.

My world collapsed around me. Time broke into two halves: “before” and “after”. I wanted to be dead. No, this cannot be, that’s nonsense – schizophrenia is a terrible psychiatric disorder. But how can there be mad children, at this early age?

What does this doctor mean? My son - this boy, so like an angel - is mad?!

I was so shattered that for some time I lost all ability to distinguish between good and evil. It seemed that this diagnosis was like death, or worse – it meant that my cherished son would never be able to have a normal human life. He and I had once narrowly escaped being run over by a car, and a thought suddenly flashed through my mind - that death would have been a better solution for both of us... How many times later I asked God’s forgiveness for having had such thoughts!

But common sense soon triumphed, and I was able to look at the situation from another angle. Yes, I am not prepared for such trials, I am not yet thirty. True, I used to have a different view of my own life and that of my child... However, I am a mother of two children, so I must be strong for their sake; and besides, if my son is not destined to have a normal adult life; it means that he will always remain by my side. But this is the secret dream of any mother!

What followed were endless visits to various well-known childhood psychiatrists and neurologists. And always there was the hope that very soon my son would be fine, and that he only needed the correct therapy. And during this time we never went to the playground, where there were other mothers with children from our residential block. Because, as soon as we approached a place crowded with noisy kids, Kolya would give out a loud yelp of protest, and we would hurriedly leave. And even when, on one occasion, the playground was nearly empty, and I managed to sit down on a bench next to another mother with a child of my son’s age, it quickly became clear that I had nothing to talk to her about. She began discussing and comparing (in a way that was very painful for me) the “achievements” of our children. I was firm in my refusal to disclose my son’s “secret” – after all, he looked just like anybody else, it was only that he did not talk; and I still believed that eventually he would be all right.

I think that this belief had been planted in my head by the doctors at the Teenagers’ Mental Health Centre at the Gannushkin Hospital who were monitoring my son’s condition. Later I realised that this had been their way of softening the blow they regarded the mother of a sick child as a kind of their patient, too. In my opinion, this policy was absolutely right, because in this situation the child’s parents need no less care that the child himself. For them, it is a severe psychological trauma.

Moreover, it is the parents – not tutors or doctors – who have to shoulder the main burden of their child’s care.

I do not know if I would have been able to survive that blow and find the strength to struggle on, had I not been supported by my husband, the father of our children, and my true and loyal friend. Also – and this is very important in a situation like this – he is wise and perceptive. We are both in the same creative profession, and so it was possible for us to work from home, with a flexible schedule. From the very first day of our first child’s life (and then the second one arrived) he shared equally in all the household chores. Washing, cleaning, shopping – we never had any arguments about who would do what. And so in this catastrophic situation my husband stood by 55

me, never once leaving my side. He did even more: there was a period when I had my hands full with the newly-born Anya, and he took upon himself the main burden of Kolya’s care. And later, too – during all that time when our young children simultaneously had to be fed, dressed, put to bed or bathed. I think that the “lightness’ of Kolya’s autism can be explained not only by the fact that throughout the first year of his life I hardly ever let him out of my hands, but also by the very favourable family climate.

The two grandmothers and the grandfather lived separately from us. But during the first two years of Kolya’s life we shared a flat with my mother, and she came to love Kolya so passionately (I am not exaggerating) that in later years she would always try to spend with him as much time as she could.

This amount of love is very enviable! But there is also a hidden peril: an emotionally retarded child (remember his diagnosis!), if he is always on the receiving end and does not give anything in return, may grow up to be egoistical - and thus become even lonelier. Sooner or later, when he is no longer that slightly strange but charming infant, he will turn into a gloomy, demanding and unbearable adult.

And here an essential and invaluable role belonged to Kolya’s baby sister. The very fact of her existence demonstrated to Kolya that he was not the only one, and that he had to take into consideration the family’s youngest member. Anya was growing and soon began to actively involve her brother in joint activities. My plan – that they should be close to each other in age – began to bear fruit! Naturally, they shared a nursery, and when the two were playing together – say, building a train (remember Kolya’s obsession with trains and cars) from anything at hand, and we could hear Kolya’s monosyllabic exclamations mingled with Anya’s laughing, – our hearts rejoiced. Of course, her contact with such an “atypical” elder brother had its impact on Anya’s own development, and in particular on her speech. Naturally, Anya’s first phrases were modelled on Kolya’s – she would speak of herself in the third person and in the masculine gender. But we did our best to correct this. Kolya, being only three years older, could never remember later on having, for a time, been the only child.

Getting back to Kolya as a four-year-old, when he was still locked inside his “inner shell”, there is one event of paramount importance in his life which I cannot overlook. And so I cannot avoid speaking of our friends, without whom one would never be able to survive in a perpetual duel with fate. Friends are a kind of “external family", and they can take to heart our trouble to the same extent as our next-of-kin, or sometimes even to a greater extent. In our case, our friends were always doing their best to help. All the doctors, and all the best specialists found their way to us through our friends. And it was through friends that we learned about the Centre for Curative Education, which at that time was still a very new establishment.

It was a miracle! We found out that we were not alone with our problems. And that these problems, after all, were not so terrible and not so irremediable. We were told that our son would get help, that he would be prepared for school, and would be able to study and to get on with his peers. “Yes, he is ours!” one of the members of the Centre’s admission board said, with an indescribable smile, during our first visit there.

And so it was that Kolya found himself in the hands of his first tutors – Asya and Lena Kuznetsova, the latter being our friend. Then, when Kolya was older, we got to know 56

another wonderful teacher - Nadezhda Lvovna, who later organised the first primary school for autistic children with intact intellectual abilities, where Kolya and other kids could study on the basis of a full-scale mainstream curriculum. I believe that in part (or perhaps entirely) Kolya owes his certificate of completion of secondary education to Nadezhda Lvovna.

“Night at the Bottom”. Drawing by Kolya Filipppov

(Getting ahead of my story, I should like to say that now, when Kolya is twenty, he tells me that he can remember nothing from his early childhood. All his first memories date back to that spring when, as a six-year-old, our son was taken by his father to Leningrad, to the V. M. Bekhterev Psycho-Neurological Institute, and after a course of medical treatment, to our great joy, he suddenly began to talk!)

Of course, if Kolya had never begun to talk, school would have been out of the question. But, despite all the efforts of his tutors, his own speech, and the ability to communicate in the first person singular, had failed to develop.

Kolya was at this point already six years old, and my husband and I began to lose hope. But once again our friends intervened - this time it was some friends in Leningrad. They found specialists for us at the Bekhterev Institute, where there was a special chair for the study of epilepsy. They agreed to try to help our autistic child by way of an experiment. After a course of medical therapy it looked as if the sealed valves of Kolya’s “shell” had broken open, and his own speech – which until then had been suppressed from birth - came out in a torrent. From then on he became the most talkative one in our family. He began to ask innumerable questions, and we could now understand his inner world much better, and also the problems he was faced with. And I believe that it is logical that he can only remember himself from that time.

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Information about the outside world, which in a normal setting is acquired by children gradually, rushed in upon Kolya’s mind all at once - it was a one-time achievement. The side-effect was that he developed a nervous tic, which prevented him from starting school that year (thank God, it went away two or three years later, and I think now that it was not too high a price to pay for his cure).

His tic was rather severe, and would manifest itself at its severest whenever Kolya felt nervous – which was pretty often. His whole body would then begin writhing. This was the reason why I did not let him join a karate class - I was simply too frightened for him. He asked to be signed up for a karate class after a wonderful summer which he spent with his grandmother at her dacha, in the company of his sister and other, normal children. My mother, Kolya’s grandmother, was always distrustful of Kolya’s diagnoses. That summer I was very busy with my work in Moscow, and the dacha was near Leningrad. I was only able to visit them there occasionally. Therefore, it was wholly my mother’s achievement that Kolya gained so much self-confidence that he wanted, in the autumn, to start learning karate – or to go to a swimming-pool, to learn to swim.

By that time, Kolya had already turned 11. I was happy – and wondered if soon he might be entirely cured? And the doctor from the Bekhterev Institute also gave us some hope by saying that in cases like Kolya’s it was very important which course the illness would take – whether it would irreparably damage his personality, or leave it whole, with the potential for development and growth. And here was clear evidence of development and growth! He wanted to go in for sports! Farewell, autism!

For two months my child would give me no peace. He wanted to be strong and athletic, like other children. I was glad, though not without some inner trepidation.

And so, at last, here we are walking towards a nearby school - to sign up for that karate class. Of course, both of us are excited and uneasy at the same time: what is it going to be like? And halfway there, Kolya suffers a severe attack of his tic – verging on convulsions. And I imagine that it might happen again during his coaching session, in the presence of the other eleven-year-old boys and the coach – a man not very experienced in dealing with problems like that. How horribly self-conscious Kolya might become as a result! And what would be his reaction to the coaching-session itself, when he would have to learn how to hit and retaliate? Is he really capable of realistically assessing his desire to get into such close contact with his peers? And the swimming-pool would not, perhaps, be any better for him. Not so long ago he was simply terrified to go anywhere near water. Was his grandmother truly able to put him right - or was it only just the imposition of somebody else’s will, to which our son is so susceptible? We, his parents, know this trait, and constantly take advantage of it.

What, though, if on finding himself face-to-face with people who were unprepared for dealing with such a complex child - and one unable adequately to get his bearing in real-life situations – he should panic and have a fit?! His fits could be caused by mere trifles – say, when he had trouble lacing his shoes (he had only learned how to do this properly a year before, at the age of ten; he could do it only when entirely alone; and even then the whole process took at least ten minutes), or when some daily ritual was disrupted by a small deviation from the established routine. And so I visualise a screaming Kolya surrounded by a group of bewildered boys, some of whom may start 58

jeering.

But he does not realise that there is anything wrong with him! We have always done our best to conceal the truth about his condition from him, so that he could develop normally. And I make the decision: I do not want my son to feel an outcast among his peers and develop an inferiority complex! And so I tell him that I have forgotten that it is a holiday, and we will have to go back there some other day. And so we turn back. But how bitterly his words ring in my ears: "Mother, why does it always happen that, whenever I want a certain thing, something goes wrong?"

Oh, how desperately we needed a good psychologist – someone to talk to, to get advice from! There is no one even now, when Kolya is already 20. There was no one to help when my son reached puberty, and sex was virtually pouring out of his ears.

This was at the age of fifteen, when Kolya realised for the first time for himself that he was “special”, not like other children. What, no doubt, contributed to this was the fact that I had had Kolya transferred from the special education school to a mainstream one, to study under a home education programme, so that he could earn a standard certificate of completion of secondary education. (By the way, his grades are higher than those of his sister! But this is hardly surprising: which other pupils were reading encyclopaedias all day long?) He was simply adored by his history, geography and Russian language teachers. And, luckily, he had an innate aptitude for correct spelling – he was simply unable to make any errors. The teachers visited him at home for oneon-one lessons, but on occasion they had to teach in school in place of colleagues who were on sick leave, and then Kolya sometimes sat in the classroom together with the other pupils. Once – it was a history lesson – no-one was able to answer a particularly difficult question, and the teacher happened to ask Kolya. He stood up and answered brilliantly. After that the other children began to respect him, and would always greet us when they met us in the street. The school is nearby, and I began to let him go there alone. And none of the children ever tried to bully him. I think that the main reason, apart from everything else, was the very healthy psychological climate created by the staff of that quite ordinary district school. Every time I went there, I would become immersed in that relaxed and kindly atmosphere. This can only be created by people.

The teaching and administrative staff was wonderfully attentive to Kolya, they sincerely rejoiced in his success in the humanities, and he was even granted honorary awards. But at the same time there is no doubt that school was, in many ways, an ordeal for Kolya. For the first time he found himself among a multitude of “normal” peers, and he began to make comparisons. This was one of the most important stages in his development, and the hardest so far.

“Mama, am I ill?” This was the question I was afraid would come sooner or later.

“No, not at all, you are not ill; you are simply not like other people. But all people are different in their own way!”

“Then why do I go to the Centre for Curative Pedagogics, but Anya doesn’t; she goes to school every day, but I study to an individual timetable; and I have trouble lacing my shoes, and take medicines - but she doesn’t?! What does it mean – I am ill?

Am I being punished by God? What has God been punishing me for?!”

“No, no, God is not punishing you; He has simply made you different…” (But 59

while saying all this, what I really felt like doing was to bang my own head against the wall!) “Look how many things you can do that others can’t. You have the best memory, you have learned English easily, and you are an excellent draughtsman!”

“No, I am clumsy, clumsy! I have wooden hands! I am ill! God has punished me! I hate God!” That was when I became truly frightened. What course would my boy’s development take now - in which direction would it go? How badly I needed advice from an experienced psychologist! Or perhaps a priest... Where were they?

The staff of the Centre are very nice and kind people – “defectologists”, logopaedists and other specialists who do research, who observe us – no, not the whole family, of course, – only Kolya. Because the only people who discuss Kolya with me are the doctors - the psychiatrists who need to prescribe the most appropriate medication. But there is no one here to discuss the problems facing the family which has to raise a mentally disabled child – the problems that we are currently faced with; and so we do not know what to do. On the contrary: sometimes I was informed by the ceramics workshop’s staff that, for example, “Today Kolya was shouting a lot during the class, and he was disturbing the other children, so we had to make him sit for some time in another room”. Or: “Kolya behaved very badly today, please talk to him about it.” So it was I who was being appealed to as the chief psychologist! So this was an Arts and Crafts Centre, and all his emotional problems had to be sorted out at home! It is true that during all these years my husband and I have been so wrapped up in Kolya’s world, tried so hard to understand his motivations and learned so well to anticipate his reactions that we have become very adept at dealing with him – we are, in fact, eminent specialists in the field. But how difficult it is to cope alone with such complex problems! I was desperately looking around for moral support and competent advice.

But we never found any omniscient and intelligent psychologist, and in the end managed to cope on our own. Gradually Kolya was turning into an adult, while we, as best we could, tried to help him find peace with himself. And it seems that he has finally been able to forgive himself for being “special”. Unless I am profoundly mistaken, he is now in harmony with himself - insofar as this is possible. This is due to the fact that, besides his family, he now has a “private” life of his own: his friends at the Centre, the summer camp at Valdai where they sleep in tents and have evening gatherings around a bonfire, and the love of many people as well as his parents. And most importantly – not only the love of those people, but his own love for them. The tutors and artists – Tamara, Yulia, Nastia, and Lyosha Karaulov, who was also once a tutor at his much-loved ceramics workshop, – they all are his loved ones, his family.

But – and there is one important BUT – none of this has come to Kolya “naturally”, the way it comes to ordinary teenagers; it all has been specially organised for him, and for others just like him, by grown-ups.

And suppose there had been no such rehabilitation centre? Then Kolya would have had no such outlet and no opportunity to socialise, he would instead have become a recluse at home. As a matter of fact, even now any occasion when he has to leave his home environment is an ordeal for him. Of course, he has some experience of moving 60

around on his own – he travels across half the city on the underground to visit his grandmother, he goes to his classes with a private English tutor in the block next to ours, and he travels to the Centre for Curative Pedagogics to his ceramics workshop.

Recently, he has managed yet another achievement – another victory over himself: a rather lengthy journey on public transport to an artist for a private painting-class. But every new route must first be explored together with Mama.

We are trying hard to instill in Kolya the habits which are essential for an independent existence. He can be sent shopping, made to tidy the room and to wash his clothes. But to do all this, as a rule, he needs to be asked, and he will never do any of these chores on his own initiative. As for his further education, it is difficult for me to make any decision… I do not want to make up his mind for him, and he is so remote from reality that is impossible to know if he truly wants anything else in life - other than for his habitual daily routine not to be disrupted in any way. Besides, I really cannot imagine how a person like Kolya could do anything he is not obsessed with at that particular moment. However, no real work can ever be accomplished without also doing certain things which are necessary, though uninteresting...

The only prospect that I can visualise as more or less acceptable for my son is the career of a professional artist, since he has a natural ability in that field. But this country lacks the relevant infrastructure – there are no art workshops for the disabled, nor is there a “market” for such art. They say that somewhere out there, in the West, such workshops do exist, established by the government or by middle-class parents on a private basis, or by charity funds. But all this is possible only in “developed bourgeois societies”, where the necessary funds are available, and - more importantly the goodwill to help fellow human beings. However, the only prospect for us here, it seems, is forty years of wandering in a desert...

My husband and I are nearly fifty. What will happen to Kolya when we are no longer with him? I do not know. I am at a loss when someone asks me where Kolya is going to study next. He has a fully valid degree, and he is so gifted. But superficially things look rosier than they are in reality. Kolya’s condition is always a factor, and I do not know how it will manifest itself in any of the complex situations which are so abundant in our everyday life (remember the karate class!)... Yes, he can do some technical translation, or work at an archive, or FURTHER DEVELOP HIS ARTISTIC SKILLS (although he could not possibly manage without help from me and friends).

But, first, we do not know if he would be able to sustain the strain of it, and secondly, as far as any kind of activity is concerned, there is not a single spark of enthusiasm on his part. The only thing that worries him is what will happen to him when we pass away, and whether he is going to be institutionalised. If I really want him to earn his living somehow, then I need to give up my own job and devote all my time to promoting my son’s “career”. And this would have to be my responsibility alone, because the two grandmothers are too old, and my husband is too busy providing for our rather big family. Besides, I do not know any services which professionally deal with such matters. Lack of information is also one of our fundamental handicaps.

As for the impact of our son’s birth on my husband and myself – it is true; we were certainly not cut out to become the parents of an autistic child. I have already admitted that my first-born’s illness was a painful blow. And it was a terrible blow for 61

my husband – even to a greater extent, because his son by his first marriage, who is ten years older than Kolya, is mentally retarded. It took a long time for us to accept Kolya the way he is, and we spent years waiting for a miracle, a sudden cure. As that miracle never happened, the inner conflict resulted in a severe emotional crisis. I had to totally rethink my attitude to life. Still, I managed to get over it and become a new person. I am convinced that, however modest, my professional success was possible only as a result of this ordeal. I now accept life the way it is. And I can find happiness anywhere in ordinary life. It can be put like this: Kolya has brought me up!

Yes, there is no cure for my son’s condition, but at the same time he is not like anyone else, he is unique, and his idiosyncrasies are sometimes very cute and very attractive. He can be touching and naïve, he is essentially an eternal baby, and so he will forever stay by my side - by our sides. It seems to me that Kolya has taught us to be attentive to one another’s needs, to cherish the emotional atmosphere in our home – never to shout, never to get irritated, and never to make “pointless” – as Kolya calls them – nagging remarks. He has taught us conscious love, and to analyse not only his, but our own behaviour. And it is this love for our son, for each other, for our daughter who has grown to be a caring and attentive person, which sustains us in our destiny.

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Eight Alyona Trubikhina I remember seeing three-year-old Alyona. Or was she already four then? At that time everybody used to call her Lala. She would run around among us – a tiny girl with huge, soulful eyes; she would take someone by the hand, start pulling as if she wanted to go somewhere, and it would be difficult to understand what she wanted: Lala was non-verbal, she could not explain anything…

Now she is a young woman. Of course she is not independent. But I would say that she is a person with a standpoint that is distinctly her own. “Lalka” – now Alyona – is a serious person. And a delicate one. And she says what she wants whenever she thinks it necessary. I did not think that this would ever happen.

But the miracle did happen, and Alyona now works with ceramics, writes poetry and is able to talk to us. But her eyes have remained unchanged – they are still expressive and beautiful…

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Mother Tanya: I Wouldn’t Have Understood So Many Things Without Her… In undertaking this work, I am faced with a very difficult task, and ask your forgiveness for my inefficient handling of it. The current period in our life cannot be called easy, or our situation very favourable, and so I cannot say to you: look, if you have similar problems, do not despair - in the end it will be all right.

I have always believed that one has a right to share one’s experience only when there are positive results. And so I do not like to listen to other mothers discussing what they do when a child is naughty, starts fights, is disobedient and so on, when there is no evidence that their methods have brought about any change for the better – the “evidence to the contrary”, as demonstrated by that particular child’s behaviour, being here, before our own eyes. But in the treasure-chest of my life I have managed to unearth something that I am not ashamed to offer you in God’s light: a real treasure whose name is Hope.

Hope is not our dreams - it is the spirit of life, an expectation beyond and above any evidence or opportunities. The Polish writer Stanislaw Jerzy Lech once wrote that in this world nothing disappears except fulfilled desires. But hope is not desire. And when they say that hope is the last thing to die, this really means that it stays with us.

Hope never dies, and never disgraces itself. And our world is organised in such a paradoxical and consoling way that hope walks arm-in-arm with those who are weak and sick, who have exhausted their strength and found no support in it.

My daughter Alyona is now nineteen years old. Although belatedly, she has now reached that difficult age that psychologists, even in relation to healthy children, describe as an illness that has to be lived through. It is the period when spring floods wash up all the scraps that have accumulated in the subconscious – fears, inhibitions, lack of love, or gaping holes instead of the communication skills that one failed to acquire at the appropriate time. And so what about the plight of a young person on the brink of adulthood, who has never as a child – either inwardly or outwardly – been like the “normal human beings” inhabiting this world, and who only started to talk at the age of eleven or twelve? And who, in addition, is only too painfully conscious of her own “other-worldliness”?

Alyona has never been given any definite diagnosis – only what one wise and perceptive doctor, who has been following her progress since early childhood, has called “her individual mode of development”. Probably we have to thank for this special mode the staphylococcus which she caught at the maternity hospital (by the way, at that time it was one of the best hospitals in Moscow). When Alyona was three months old, the infection was finally detected in my breast-milk, and of course any further breast-feeding was forbidden. It was a serious emotional trauma for me: it seemed as if I was abandoning my daughter to her fate. And indeed Alyona’s development (despite these intestinal troubles, up until then she had been growing rapidly and was merry and active) suddenly seemed to come to a halt, and by six months she had become motionless, and just lay staring at me deeply and in a 64

frighteningly incomprehensible way. And even the doctors, who had always been saying, to console us, that such a remarkable baby (at three months I had heard predictions that she would start walking at not later than eight months) was bound to catch up with her peers, now realised that something had to be done. They prescribed many things – whether rightly or wrongly, – and my baby stood up and began to walk at sixteen months. But the intellectual gap did not disappear, and was only increasing with the passage of time. I searched incessantly for help and for a cure. At that stage I had no doubt that we would find help for her and that a cure was possible, my belief being firm – not (at that time) in the power of God, but in man’s huge inner potential.

The route I followed was not direct, but I persisted, plagued by a sense of guilt over the fact that something bad like this could have happened to my child. This feeling of guilt produced not gloom, but a sense of responsibility and the strength which I needed to continue with my quest. And there was the stability provided by the family and home that my husband and I had built, where kindness and help were readily available.

My girl’s specific condition could be described as “a lack of skin” – a painful exposure to all the winds blowing in from that outer world. Sometimes that world can bring her loved ones’ tender caresses, but it can also be both threatening and frightening. Once I found out that, at certain moments, Alyona was able literally to read my thoughts. To test the truth of this discovery, I asked her in my mind to bring me a ball - and she did! But then I decided, once and for all, to forbid myself any further such intrusions. This happened at the time when my mother was dying, and

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suffered greatly. It is terrible to imagine how Alyona must have felt when the hearts of those who loved her were filled with pain.

Mother died on a Good Friday, and was buried on Easter Sunday. In those stark, incredible days I received such tremendous help from above and such a new sensation of life – and of life that never ends with our parting here on earth - that my soul understood the call to enter into a new relationship with the mystery of being.

And I decided that I needed to be baptised. This was like a wedding in church with someone who had already entered into a marital relationship with me, although I did not really know then who He was. I only knew His Name: the Resurrected Jesus Christ. Thus, at that time, without having yet read the Gospel, I perceived my need to be baptised as the inability to stay away from the bridal feast.

Three of our family were to be baptised on this occasion: our two children (Alyona was three, Alyosha – five) and I, my husband having a dim recollection of having been baptised in early childhood. On a sunny morning, together with our friends, we all went to St. Feodor Stratilatos – the Antiochian church in Moscow.

Alyona was the first fearlessly to enter the church – and she ran ahead, without looking back. But in the middle of the church she stopped, stood still for a moment - and then rushed out, crying. Once outside, she refused to go back inside the church, and any attempt to lead her back towards the entrance produced terrible screams. The old women serving in the church became very concerned, and kept saying: baptise her by force, and the devil will leave her. But I could not possibly imagine applying force in this situation. The priest, who was preparing the sacrament, at my request came out of the church and talked in a very kind way to Alyona, but we were still unable to get her inside. The priest advised us not to have the child baptised on that day, but to come back as soon as we could and make another attempt. And so only Alyosha and I were baptised, while Alyona stayed with Dad at a nearby playground. After baptism I had a feeling of peace and profound joy. We found Alyona and my husband at the playground, I took Alyona in my arms, and we all started walking towards the underground station. As we passed by the church’s door, I slowed down for a moment, realising that the child in my arms was silent. Then I took several steps up the porch – she was still silent. We entered the church – silence. The old women were overjoyed, saying that grace had been bestowed on the mother, and so the child calmed down!

They rushed to look for the priest, who was still there, and the baptism took place straightaway. Alyona stood in the bright copper font with a clear and concentrated look, a bright ray of sunshine from a window resting on her head…

I describe this moment in our life in so much detail because it was a landmark.

We were set on our way of confirmed Hope. A year later I joined the group entrusted with welcoming newcomers to our church and preparing them for baptism, and so my path to God and the Church was determined. And on this way God extended our family, and it now includes many marvellous people, for whom these words - “bear ye one another’s burden” (Galat. 6:2) - have the profound meaning of eternal life. And our doctor, observing what was happening from year to year with Alyona, would say: there are many wonders in the world, but you, Alyona, are a true miracle.

When Alyona was about four years old, and it became clear that she needed some very special kinds of help, the Centre for Curative Pedagogics, which had 66

recently opened in Moscow, appeared, along with “hippotherapy” (horse-riding as a method of rehabilitation). And a little later there came “Krug” [“The Ring”], a place with interesting rehabilitation programmes, and most importantly – game therapy. Life became meaningful, and was filled with all the best things available at that time for our children.

That said, our life was not as altogether radiant as these words might on their own suggest. There were still plenty of difficulties. It was a problem when we walked in the street, or used public transport, or when we had to deal with the pitying - or sometimes unkind - looks of other people. It was hard for my girl simply to exist in this world, which was so sharp, loud and aggressive. She started school (it was a good school), but after spending just two months there, had virtually to retreat indoors for six months: such was the effect of the break-periods, with all their noisy activity, which we all remember so well from our own school days; but it was simply too much for Alyona.

Years passed, and the various protective mechanisms were gradually beginning to work, but her fragile soul was left with scars – or even open wounds, which sometimes hurt and bleed to this day. Because this world of ours still has a long way to go in learning love, forgiveness - and hope, this treasured gift which has been bestowed on every one of us.

Fortunately, our children are not aware of the tremendous hardship and effort that every step along the way costs their carers (indeed, they simply do not understand). The children just wait and hope. Thus, my Alyona is impatient for the ceramics workshop at long last to open, so that it will be possible for her to work there in earnest, to earn money, and to feel, finally, that she has truly grown up. Ceramics has been her favourite occupation for a long time, she loves it, and she has acquired real professional skills and earned success and recognition.

I am grateful to God for this destiny - for His teaching me, through my daughter Alyona, how to find meaning in life, profundity and the inexhaustible sources of faith and hope. I came to know the taste of genuine things – love, friendship, faithfulness, truth and beauty. Without Alyona, I would have never realised what a mystery the birth of a word is, and would not have valued that wonderful and powerful gift – human speech. I would have never been able to appreciate the abysmal, incomprehensible – and at the same time sensitive and fragile soul of a child (and of course, not only of a child). And, given my sanguine character, I would have never have understood what it means to be weak and distressed, or abandoned by the whole world. And, believe me, this knowledge is a genuine treasure - because it is then that the soul sheds its crust of external matters, the bark that had grown over an insensitive heart dissolves, hope is born in the depth of our being – and consolation is found.

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Nine Ghena Akimov Mother Natasha is quick, light on her feel and active. Her adored son Ghena is big and soft. He walks towards me looking to the side, as if not at me at all. He approaches, gives me a short shy glance and says: “Hey, old woman, remember how you and I were young once?”

Ghena and I once played the roles of Old Woman and Old Man in the play “Kolobok” 19. Until that amateur show I had rarely spoken to him, though I was able to feel his inner warmth. But I found out that he had an excellent sense of humour, an almost photographic memory, and a deep attachment to the people around him.

At the meetings of the Faith and Light Group, during common prayer, Ghena always asks God to help all his “beloved people”. He does not need any notes or instructions, or to be reminded. He just sits there and asks: “Lord, help!”

And he says the names of those who live in his heart. Mother Natasha becomes nervous. We all are waiting. Ghena prays for us all – for three, five, ten minutes…

19

A Russian folk tale about a ball-shaped loaf of bread which was baked by an old peasant couple and then embarked on an adventurous journey.

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Mother Natasha: My Son On 24 February 1981, a son was born to me - Natalia Gennadievna Umantseva.

For two weeks I could not decide which name to choose – none seemed good enough to express adequately that baby’s amazing nature, or my feelings for him. Now my son’s name is Ghena.

He was growing, eating, bathing and crying a little.

At two months all was well, except one thing – Ghena’s head was still swaying from side to side. It seemed he would never be able to control it properly. But we were not frightened at all, explaining it to ourselves and others by the trauma that Ghena had sustained during birth: his little head still bore two huge swellings – cephalohematomas 20. They would go away, our paediatrician had said. We waited, in hope.

At four months he finally could hold his head in proper position. But later, at six or seven months, we were faced with a new problem: Ghena was not making any attempts at all to sit up.

Later on, our worries were only multiplying. We arranged treatment for him – massage, and vitamins. At one year, my child was cheerful, looked at books with interest, loved to listen to songs being sung to him, and was fascinated by his spinning top. But he could hardly stay in a sitting position, and in his play-pen he would just hang on to the railing like a rag.

That was when I got really scared. The doctor would say nothing, and did not offer any advice as to how Ghena’s condition could be improved. Once Ghena was seen, quite by chance, by someone whose child had cerebral palsy. She drew our attention to the peculiar position of his hands: they were turned outwards. On her advice, we rushed to Moscow City Hospital No 68, to arrange a consultation with Doctor Semionova who, as we had learned from the newspapers, was one of the most successful specialists in treating children with cerebral palsy.

At that hospital he was diagnosed for the first time with the childhood cerebral palsy syndrome. The development of his motor functions was delayed, just like his mental progress.

But then, at that stage, I was not yet overwhelmed with horror: there was still some hope that he would be able to catch up, and so all would go well.

By the age of four, Ghena could run, knew all the letters in the alphabet, would pronounce myriads of complex words, but was not capable of fluent speech. He would make do with just a word or two to express his desires and thoughts, and always

20

A cephalohematoma is the collection of blood under the periosteum, and is almost always a complication which arises from childbirth.

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referred to himself as “Ghena”, never saying “I”. A complex genetic test yielded the final diagnosis: Martin-Bell syndrome 21.

At the kindergarten they refused to take him: the child had no brakes and could not be engaged in any activity for longer than 5-10 minutes.

To our great happiness, he was admitted to a group set up at the Institute of Defectology (now the Institute of Correctional (Special) Pedagogics) for autistic children. So, one more word came into our life: autism.

But it was time to think of starting school. I was adamant in my refusal to agree to our district psychiatrist’s suggestion that Ghena should be referred to a special education school. It seemed to me that to place him in a special establishment would be to confirm his status as a severely (and irrevocably) disabled child, and thus lose any hope for him of a happy future as a normal person.

We started a home education programme under the mainstream curriculum. The teacher from the school would come to teach Ghena twice a week, and sometimes once every two weeks. It was no good. For Ghena, there was neither any new life of his own, nor any friends.

Two years passed. Once, feeling gloomy and without any hope, I visited the special education school, which was only a few stops away by tram. However, I liked everything I saw there: the teaching staff, the children - many of whom were in a much better condition than Ghena; but there were also some more severe cases. And so Ghena was admitted to the third form.

This was the beginning of a new life – both for Ghena and me. Now, many years after his graduation from that school, I am coming to an increasingly better realisation of how wonderful that time was. There was no more loneliness. Ghena now had new concerns and new topics for conversation, and he had also made some friends. And the most remarkable thing – during the summer the school ran a summer club.

My son studied at that school until he was 18, and then, together with three of his classmates, he started at a gardening school.

Not that Ghena loved growing flowers. His interests lay in a totally different sphere – everything to do with transport: trains, tramways and travel. He loved looking at maps of various cities and provinces. But, in the light of our school experiences, I was firmly convinced that any group classes were better for him than being on his own at home.

21

Martin-Bell syndrome, or fragile X syndrome, is a genetic condition involving changes in part of the X chromosome. It is the most common form of inherited mental retardation, accompanied by symptoms of early childhood autism.

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After two years of studies and his graduation, we were once again faced with the problem of what to do next. However, now Ghena goes to a ceramics workshop three times a week, and this year he has begun to work at the printing-shop at the Centre for Curative Pedagogics, and then gone off to summer-camp with his “colleagues”. (But they charge a fee for these classes, so if I lose my job, or can no longer work for some other reason, there might be no more of any such activities for him). He needs to be with other people and have a useful occupation. Ghena, despite his seeming remoteness and tendency to “switch off” during conversations (which is just a symptom of his specific condition), is really full of warmth. He is perceptive, attentive and sensitive in his relationships with his friends, and he worries and cares about them. He is a wonderfully faithful friend, and his love is never darkened by egoism or jealousy. All his feelings are pure and transparent. Once a person is admitted into Ghena’s circle of attention, he or she will forever occupy a certain place in his thoughts, and he will wish them only well.

Ghena’s memory is excellent. After walking just once through an unknown town, he is able to describe every detail of the entire route. The names of streets and towns hold a special fascination for him. He remembers all his rare journeys to different places with me or with the therapists and friends from the club at the Institute of Correctional Pedagogics, and these memories are precious to him.

I have already mentioned that Ghena loves trains. He can stand for hours and watch the passing trains. My son dreams of travelling, he sees off the trains whose wheels clatter on the rails and, together with all his friends, he departs on every one of them. My reticent boy has even composed a poem about them. The very essence of his being is expressed in it. Here it is.

A Poem About Trains Once I saw an electric commuter-train, It was like a caterpillar.

Instead of legs it had a multitude of wheels.

I felt joy and waved my hand, I wanted to take a ride on it, On that fast electric commuter-train.

Oh, if only I could go on it!

I would play cards with my friends And look through the window At forests, at passing trains, At bridges, monasteries and churches, At the sun riding alongside us, At locomotives fuelled with fuel oil, Which serves them as fuel.

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I saw a manoeuvring diesel locomotive, That was banging out with its wheels The song about Olya Borisova.

Then an electric locomotive passed by, And I remembered my friend Shurik, Who is now at home in Moscow, And who now is resting.

And then one more diesel locomotive passed by – See how it rattled its wheels, And I remembered Seriozha Strizhakov.

I talked to him on the phone, I simply talked to him About how we both had been on an underground train.

He sang to me the song “Clouds”.

Then an electric locomotive passed by, And I remembered Igor Kostin.

And then a freight train passed by.

And then I liked How Alyosha Fedotov played the piano.

And a diesel locomotive clattered by to Alyosha’s music.

Music was sounding, and only diesel locomotives were passing Two fuelled by fuel oil, one manoeuvring, And one more fuelled by fuel oil, And two more manoeuvring ones.

I stood in the street watching the trains.

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Part Two

The Bottomless Well

“And when we listen to one another, when our gaze travels across another’s face – how rarely we do it with a true desire to hear and see! Because to hear in earnest means to truly meet that person – not for one moment only, but forever.

Metropolitan Anthony of Sourozh ”Ways of Christian Life”

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REQUIEM And now upwards Upstream through the azure, To that luminous city, Where A mother won’t dare take her child…

Marina Tsvetaeva

What can I now do for you? Only write. But maybe it all is for the best, and there – where one is freed of any chains forever, your existence - at last - is easy?

Seriozha Kolesov – I saw him for the first time ten or twelve years ago, at a rehabilitation camp where children were having “horse therapy”. He had merry brown eyes and a joyous smile, and would laugh at jokes. His parents told me that Seriozha had graduated from a secondary school, was interested in the history of the Tsar’s family, could read English, and wanted to study at university.

His Mum and Dad took it in turns to push Seriozha’s wheelchair, and carried him up and down staircases. He had been paralysed from birth. To take a single step, 74

to stretch out his hand, to turn over in bed – all these things were beyond him. He expressed his desires – “Yes”, “No” – by slight movements of his head: nodding, or turning it sideways… His parents had devised a way of talking to him: they would name letters, one by one, and Seriozha would make a nod when the letter matched the one in the word he had in mind ...

Eventually, the immobile Seriozha became too heavy for the therapist to heave on to the horse, and so a few years later we would meet only at a summer place for disabled children in the country near Moscow. Sometimes Seriozha’s father had to go away to the city, and then his mother would ask me to help her.

We became friends. Seriozha did not study anywhere after school, but he read books on his own. An open book would be placed on the table in front of him by his mother, and Seriozha, focusing his eyes with tremendous effort, after a few hours would manage to read one page. It was the same with his English books and dictionaries. Seriozha also wrote stories on his computer, and it cost him untold trouble to hit the correct key with his finger. I cannot imagine how many months it took him to write a single page… The hero of all Seriozha’s stories was always the young scion of the Tsar’s family who managed to conquer his illness of childhood cerebral palsy. Seriozha would describe how the young man came down from the porch on his own feet, made a gesture of greeting with his hand, and began to walk and carried on dignified conversations with those around him, on equal terms …

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… When Seriozha’s mother fell very ill, it was very hard for his father. My friend Lena and I, and our other neighbours at the summer rehabilitation centre, often came over to help. So I had an opportunity to bake apples for Seriozha - his favourite treat… During that month, while turning Seriozha from side to side in his bed, dressing him in the mornings and putting him in his wheelchair, I began to understand many things. I learned to look him in the eye and to catch his fleeting smile. I told him jokes, or just about incidents from everyday life. Seriozha laughed in wholehearted happiness!

The following year, Seriozha’s mother died.

His father was unable cope, so Seriozha was moved to stay with his aged grandmother.

His grandmother coped for several months and then simply ran out of strength… And so Seriozha found himself at an institution for the disabled.

A few months later Seriozha, following an attack of pancreatitis, was taken by ambulance to a city hospital. I was told that, as the hospital wards were full, they placed him on a vacant bed in a corridor, where he died. What torments me most is the thought that he was lying there alone, torn apart by monstrous pain, and was unable to call for anyone…

Seriozha Kolesov, young scion of the Tsar’s family, in what faraway meadows are you running now on your own feet, with that wondrous smile of yours?

S. B.

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Listen …

I am already many years old, my children have grown up, and I am now a grandmother… I grow - and get old, like the tree in our yard. Never again will I have flowing glossy hair, slender legs or youthful colour in my face. But underneath, under the hard bark, there is still my living soul ….

I walk in the street, I look... I am happy to see the world, and, amongst much else, notice out there young women who have been transformed by love and the joys of motherhood. Was I really so young then – when it turned out that love was not always capable of moving heaven and earth, and that I was powerless to help my younger son? And how painfully I feel the suffering of those girls whose children are now destined to remain “on the other side of the line” - as if I, myself, had somehow managed to escape that fate...

However, a quarter of a century ago the most important thing seemed to have become invisible to the world. Nowadays, thank God, it does not often even occur to many of the parents of disabled children that they might give up their children or hide them away…

S. B.

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Ten Mila Maziy

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Mother Lena: An Out-of-Bounds Life “Your child has autism.” The diagnosis was read out to me by the psychiatrist at one of Moscow’s polyclinics like a court verdict. “You are still young. I advise you to have a new, healthy baby, and give this one away to a state orphanage.”

I can still feel the pain of that moment, and the shock caused by that merciless professional advice. I remember my attempt to imagine what such a Doomsday would have been like: how, forcing back tears, I would lead my only daughter by her little hand, and how my five-year-old would trustingly follow her mother wherever she was taking her: to be left at that special institution, forever. From that moment on, we would both have crossed each other out from our respective lives. That’s how a broken object, which is no longer needed, is carried out of the house. But that is not how a human being should be treated…

I remember how, trying not to cry, I answered as calmly as I was able to: “I thank God that I have this daughter. My husband and I, we love this girl, and we’ll bring her up at home”.

Several years later that doctor confessed that she had followed the guidelines issued to psychiatrists to instruct them how they should deal with situations like this...

Any child with a complex mental disorder and with speech problems needs constant protection. Protection from the deliberate aggression of her peers, and from the unintentional lack of tact displayed by adults. Protection from her own fears - and generally from the harshness of modern life. And one is left to protect such a child with one’s own resources…

When she was three, I placed my daughter in a kindergarten for children with delayed language development, in the hope that her speech might improve there. But a week later the tutor locked the children alone in the room and went to have her lunch.

The children quarrelled, and there was a fight. Mila was injured, and this incident further aggravated her autism. The principal nearly went down on her knees begging me not to publicise the incident. So I agreed not to sue them, which I sometimes regretted subsequently. But we had to part from that kindergarten.

Then came the time of psycho-educational assessment boards. In theory, their goal is to protect the lives of diseased children, or at any rate to help their treatment or rehabilitation. But the reality is something else.

When Mila turned eight, we made several attempts to get her into a special education school. But every time, the board would zealously test the abilities of this uncommunicative child (who would understandably be frightened by all these strangers), and then declare her “uneducable”. So we resorted to a cunning trick. At home, in a familiar setting, we asked our daughter the questions from the test she had to pass and recorded her replies on a tape. And we then presented this tape to the board. Her answers were quite adequate. Thus Mila secured access to the special education school...

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Alas, she was only able to stay there for a short time – about two months. The special education school was not prepared to accept this particular “special child”, who was frightened by the sudden ringing of the school bells, the loud noise of many voices, and the general hustle and bustle during break-periods and in the canteen. In addition, Mila began to fall behind in her studies. So, yielding to the requests of the school administration, I took my daughter away, to stay at home.

Of course, “at home even the walls help”. But if we want to be candid about this, by doing what it did, the State shed any responsibility for this disabled child, and left us to grapple with our problems alone.

“You cannot learn social skills without society!” I was once told by the remarkable childhood psychologist, Olga Sergeevna Nikolskaya. And I realised that, by keeping my daughter in a social “vacuum”, I was actually harming her. From Nikolskaya I learned that there was a non-governmental charitable organisation in Moscow called the Centre for Curative Pedagogics. “In that centre,” said Nikolskaya, “children like yours can get real help”.

I confess that by then I had somehow ceased to believe that help could be available anywhere. But the moment when we stepped over the threshold of the Centre marked the onset of a new, brighter phase in our lives. My daughter took to the place at once. “She-Friend” [“Druzhikha”] – that was her nickname for her first tutor, Nadezhda Lvovna Morgun. Delicately but persistently, Nadezhda worked at making the self-contained child turn her face outwards and towards people. She tried different approaches to communication and mutual understanding, and tried out a variety of interaction methods in order to find the most appropriate one to deal with Mila’s hypersensitivity.

Gradually Mila became more open, and her speech began to improve. So her first long sentences appeared, sometimes progressing into simple conversations, with comments on the goings-on around her. She conquered her fear of loud sounds.

Previously, when we had to turn on the vacuum-cleaner, my daughter needed to be taken out for a walk. But one day, when I came to pick her up after her therapy session at the Centre, I found her engaged in an exciting activity: holding the roaring hose of the vacuum-cleaner in her hand, she was diligently cleaning a carpet! It was like a miracle! After this, it became her habitual chore at home. And the whole family was delighted.

At the group sessions at the Centre Mila acquired both academic and social skills. She learned table manners, and also how to look after herself and to attend to the interests of others. Her curiosity was awakened, and her powers of observation became keener.

Mila is now able to notice and appreciate the beauty of nature, and she is gentle with animals. She loves to feed homeless dogs, and she adores her cat. I believe that my child’s character has greatly improved as a result of her sessions with the art therapist, Maria Vladimirovna Vodinskaya. At these sessions the children painted in watercolours or were asked to colour various drawings. Inventing and painting a background-setting for a favourite hero, and finding an appropriate colour pattern for it – it seems to me that this activity is very helpful in producing a calm and happy state 80

of mind in children. At the music and gym group sessions Mila learned to sing and to imitate the movements of the other children. Now she sings into a microphone at home, recording her songs and poems on tapes. And since the age of 12, with the assistance of therapists at the workshop which opened at the Rehabilitation Centre “Spasenie” [“Salvation”] on Kosygin Street, she even began to make collages that are then turned into calendars or postcards. These pieces are sold at charity fairs organised by the Centre. It is true that quite often Mila is unable to stay behind the sales-counter for the whole period of time assigned to her. So, when the noisy atmosphere of the fair becomes too much for her, she leaves the sale of her works to her more robust “colleagues”. But Mila always knows how to spend her earnings in the right way and, as a rule, always picks up the biggest cake at the store.

Now she is 15. On the face of it, she is happy. She has a loving family. She has friends and kind tutors at the Centre, and opportunities for self-fulfillment in the activity that she has come to love…

But the micro-world that has been created around her is extremely fragile. It can so easily be destroyed. And as for the big and turbulent real world (outside the walls of her home and of the Centre, which has become a second home for her) - that world is not expecting her to come out there, and will probably never accept her. When I seek advice from doctors, tutors and social workers from that other, big world, I still hear the familiar litany, over and over again: “That child is impossible to educate, give her away … that sickly teenager… that disabled adult… that feeble old person… Give them away to a state institution.” Yes, such institutions – which are like prisons - do exist in this country. The country that proclaims itself, in its Constitution, a “social” state…

Some years ago Mila and I had the happy opportunity to visit a truly “social” state. In the Kingdom of Sweden the word “institution” is unknown. All children are raised in families. And at mainstream kindergartens and schools there are groups for children with special needs. In addition, there are “integration” groups and classes, day-care centres, various municipal (!) workshops, and also job quotas reserved for handicapped persons! When that most dreaded event happens – that is, when a disabled person’s carers (their parents) pass away – their grown-up children can move to municipal houses, where they occupy separate floors. They are supervised by aides and medical professionals. Those who are unable to live independently move to country communities, where they can practise crafts and agricultural skills according to the level of their abilities. Swedes say that running such communities costs the State less than the upkeep of psychiatric hospitals for the chronically ill. To say nothing of the humanitarian benefits!..

Autism is a pretty accurate term. A person finds herself behind an invisible line, which divides her from the rest of the world. But this border is arbitrary, believe me – I have lived for sixteen years side-by-side with an autistic daughter. Given some humane conditions, this impenetrable border becomes a line that can be stepped over.

One can step over it - to go to school or to work, to mix with one’s friends, or to invite 81

them to one’s place. And, in this way, live one’s life without having to abide by that horrible and unwritten law which separates those who are special from those who are normal.

Even in a football game an out-of-bounds ball is always returned to the playingfield. But life, whatever may be said, is not a game. And a human being is not a football.

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Listen…

We are raising our children. Not monsters, not cripples – but our beloved children. It is simply that they cannot be cured. They can learn something only with utmost difficulty. They are not independent: they rely on us for everything. There was a time when we thought that they would grow up but would still be like small children, clinging to our skirts, unwilling to have anything to do with that big outside world… But suddenly, and quite unexpectedly, our disabled children have become adults.

Just as before, they cannot live a single day on their own, they are unable to earn the price of a loaf of bread. But now, just like all young people everywhere, they feel that their families’ boundaries are too narrow for them, and that to have only their parents’ love is not enough. And so they want to be with other people. They want to be useful; they are in need of their own, adult lives. But our children are now no longer studying anywhere, they have no occupation and, despite their very real needs, all they can hope for is isolation – at their parents’ home or at a special government institution for the “needy”.

A friend in Germany, who works at a state home for the elderly, once told me that, in order to ensure that the people placed in her care maintain an adequate level of intellectual activity, she is required to keep them busy with creative tasks and to assist them in simple occupations like sewing, knitting, painting, moulding, or making collages with paper and glue, or paper toys.

Because, as long as one lives, a person’s mind and feelings must not be allowed to die out… I also know that, in the civilised world, disabled individuals belonging to the “able-bodied” age groups enjoy special conditions created for them at public expense, so that they can live in dignity. There are special communities, workshops and apartments where they can live separately from their parents and under the supervision of social workers.

It is only here, in Russia, that such people (our children!!!) are forced to waste their lives away in psychiatric wards, together with elderly patients.

Sitting by the wall, and wandering along the corridors, irritating the nurse on duty at the nursing-station with their incoherent mumblings. Living from meal to meal, gazing mindlessly at the glimmering screen of the only available “window into the world” – the television set in a gloomy hall. Why teach them anything, help them develop, or occupy them with meaningful work? Why bother, if they will never become “fully-fledged” members of society?

But does anyone have the right to seal off the existence of a human being - a person’s ability to feel and to think? Do we have any right to deprive such a person of an opportunity to find a suitable occupation, however simple, or a possible source of happiness?

I appreciate that the currently existing “welfare machine” (in whose institutions thousands of people, who have been deprived of their rights, are kept under lock and key) has been operating like this for many decades. And that the organisation of a dignified existence for them all will require time, effort and, most importantly – money. But somehow - in Germany, The Netherlands, 83

Sweden, Switzerland, France and some other countries – official minds have done the necessary calculations and worked out that to provide for the upkeep and useful occupation of disabled citizens in communities and family homes is cheaper than the cost of their degrading treatment behind the walls of psychiatric wards. But it seems that, in our vast land, no one is interested in such minor matters...

In Asia they say that the deepest – bottomless - well is the one that has not yet been dug. Can it really be that here, in our own country, we and our children are destined to perish in a desert, without a drop of fresh water?

S. B.

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Eleven Yura Beilezon Our disabled children are just like us: gentle or unkind, talented or good-fornothing, or radiant and simple-hearted, or simply unbearable. But they are human beings – and, just like other human beings, they have a right to live in this country, where they were born.

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Mother Sveta: Hey – Is There Anyone There?

A Very Long Prologue MY LOVE STORY It is easy to begin my story.

My son and I go out of the front door of our residential building. We cross the yard towards the archway which leads out into the street. We discuss our plans for today and tomorrow. We go through the archway into Lenin Avenue.

He is listening to me. Then, all of a sudden, raising his arms like wings, he puts his head to one side and leaps forward! He runs for about ten steps. Then he stops and with an uneasy smile walks back toward me.

Bewildered passers-by turn their heads. Some shrug their shoulders or laugh.

Some of them say a few words to our backs as we pass.

Because my son is already an adult. He is 22. 22 Normal grown-ups do not run about like this.

But this is not his fault.

Beyond the windows of our flat, Lenin Avenue - day and night - is alive with the honking of cars and hum of traffic.

During the day, life's worries urge us to move and to act. But at night (be quiet, because my son is asleep in the next room) – … in the dark, Revealing that Hope is a toothless weakling, Mile by mile, Love is retreating from madness…

I know that these lines by Brodsky 23 are not about me at all. But I crawl and crawl away from madness, making pain my ally.

I share my night-time inspirations with others. Sometimes I am even praised or thanked. But how easily, how happily I would have forgotten it all – if only I had been able to…

I remember how terrible it was when my tiny son just gazed at me with those “non-transparent” eyes of his. He could not keep any food in his mouth or understand words, and he screamed day and night. He would have a crying fit whenever anyone looked at him. He would writhe in his cot, pushing away the hands that were trying to hold him.

22 23

This was written in 2002.

Joseph Brodsky (1940-1996), a Russian-born poet, was awarded the Nobel Prize for Literature in 1987.

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Later on, he had trouble learning to walk. Then words would not come out whole – only in broken bits. This carried on for months, for years…

Doctors would just throw up their hands, and none of them were able to offer any help.

In due course it would be the teachers who would throw up their hands: imagine, such a good-looking boy – and so difficult!

The members of all psycho-educational assessment boards were unanimous in their verdict: the boy was uneducable. However, there were some enthusiasts who were willing to try. But the school principals would quickly put a stop to such defiant initiatives, as they expected no sensible results from such attempts - and no end of trouble. (How I love them, those schoolteachers, who smiled at my son when he started to shape a letter with the tip of his pen – and then, instead of completing it, his hand would just slip off into an irregular curve and stop only at the page’s edge!)

He was already ten, and he had been thrown out of a school for children with speech problems.

He already understood jokes. He would point to an excavator and say: “Look, Mama, his head’s down – he’s having a rest!” But he could neither read nor count, and every night he was tormented by nightmares.

But I would not even consider registering him as a disabled person.

It was at that uncertain time during the last century, in the year 1990…

Quite by accident I found the telephone number of a centre where they dealt with the problems of “non-standard” children. The name was not very inspiring: “the Centre for Curative Pedagogics”. I was afraid to dial the number: they would take one look and, as always, send us elsewhere! But for some reason my son was not turned down at the very outset. And after the first therapeutic session a staff member (was she a doctor? tutor? psychologist? – at that time I had no idea that there could be any difference) came up to me, sat down next to me, looked into my eyes - and asked: “So what is your biggest problem?”

The question was so unexpected that I began to cry, and then managed to say: “It’s just that we aren’t wanted anywhere.”

And she said: “Please don’t cry, we do want you here - for the rest of your life. If you wish – until your son is eighteen!” 24 That was so long ago, and it seemed then that all out troubles would be forgotten by the time Yura reached that age…

24

This was Nadezhda Lvovna Morgun, the therapist who for 16 years has been my son’s guardian angel.

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At the Centre my boy learned many things: to read, write, mould from clay, count, paint, talk to people and go on hiking trips. They taught him how to make friends, have fun, take notice of other people than himself and help them; to interact and to socialise. He was taught to believe in people and not to be afraid.

At the same time, I was learning a new approach to life. I decided that every major defeat should be regarded as a small victory. And any tiny step forward – a glorious victory!

But then, at last, I had to register my son as a disabled person.

Twelve years have passed since then.

We now have Group II Disability status 25.

My son still has problems with writing, and can count only with difficulty.

However, he is able to find his way in the city and to explain what he wants.

He is curious about things and warm-hearted. He loves life. But he cannot be like other people. Whenever the weather changes or he has to make a decision on his own, or if someone has simply looked at him in an unfriendly way or said an unkind word, he gets nervous, runs away and for hours moves frantically around the city, pestering passers-by with foolish questions and irritating policemen on duty.

But he does not want anymore just to stay by my side! He is eager to get to know people, to be needed and to help others!

Last summer, at an underground station, he annoyed people so much that they banged his head against a wall.

I am quite certain that my destiny is far from being the hardest to bear.

It was so easy to begin my story: to go out, spread one’s wings – and fly up into the sky! But then one has to get back down, on to solid earth. Back to my son and our life together. His life – in which one day he will be left alone, without me...

Part One “THE PAST IS NOT AS REMOTE AS IT SEEMS…” (A popular song) At that time, our children were already teenagers.

We got together with other “mothers” and established our Inter-Regional Organisation. We were advised by people from France and Switzerland. We were told 25

Disability Groups I, II, or III are assigned, in accordance with Russian legislation, to persons afflicted with serious health problems on their reaching the age of 18 years, and determine the size of their pension and package of social benefits. Group I status means severe disability and a need for round-the-clock care. Group II status is granted when the medical problem is less severe, but when such persons are unable to live independently and fully provide for themselves. Group III status is granted to persons who have a persistent but rather mild affliction. They are considered capable of living independently and even working and providing for themselves, their only privilege being the right to shorter working hours or a specially adapted workplace.

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that there, in those countries, grown-up children were kept occupied at workshops.

They were able to live in group homes. They were regularly visited by social workers, who taught them how to dress themselves, helped them at table, and accompanied them on walks and on their way to work.

We made a decision: after we pass away, our children here, in their own country, should not be kept locked up within the four walls of a mental institution, just wandering aimlessly around, shut away from the outside world, lost, not wanted by anyone. We decided that we would organise workshops, where our children would be able to make attractive and useful items capable of warming somebody’s heart. It would be a form of everyday life. We would tell other people, the normal ones, about our children and teach these other people to love them. After all, our children cannot be blamed for what they are, can they?

That was five years ago.

Today, our children are already grown-ups.

Part Two “TO WANDER IS THE MILLER’S JOY, TO WANDER…” (Franz Schubert, Miller Songs) I put together a booklet.

The text was as follows: * These are our children * There is no place for them in this world * But they want the same things that you want * Officially, they are unemployable * But they want to be useful * We know how to help them * We are not sacrificing our lives * We simply love our children My friend Lena and I spent hours rewriting and rearranging these lines – to make the message clear to everyone. We selected the best photos. We tried to work out the best possible wording. You see, they were our children.

Part Three “OH LADIES AND GENTLEMEN, THERE’S NOT A PENNY’S WORTH OF WARMTH…” (Bulat Okudzhava) So let me feel ashamed. Those who cannot will give nothing, but what if someone out there happens to hear and wants to help?

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I live in Lenin Avenue, so I embarked on my journey from one big store to another.

I wanted to tell the story of our children.

But I had no chance to show my pride and joy – that beautiful home-made booklet. No senior manager or commercial director came out to see me.

I had no chance to see their faces. Not a single face.

Part Four A PILGRIMAGE TO HIGH PLACES We made appointments and went to district council offices. We smiled, we told the officials responsible for implementing social development programmes how nicely we would equip our workshops – so that there would be no need to keep our grown-up children in psychiatric hospitals and special institutions, stuff them with expensive drugs and spend government money on our problems. Our children would instead know that they were wanted and feel that they were human.

We asked to be allowed to use some suitable public premises - however modest.

We got smiles in response. Promises of support. The following month we would be dispatched to talk to yet another official.

We were going round in circles like this for three years.

A Comedy in Three Acts 1. Once upon a time, in one kingdom…

And then, quite by chance, we learned that our State had decided to adopt a civilised approach to its disabled citizens – the little ones and grown-ups alike. And that as far back as 1995 the Law “ON THE SOCIAL PROTECTION OF DISABLED PERSONS” had entered into force. And that every disabled person was now entitled to a personalised “chart” - an INDIVIDUAL REHABILITATION PROGRAMME (IRP), to be developed for each needy individual by the Bureau for Medico-Social Expertise, whose job was to determine the degree to which that individual’s vital functions were impaired.

And in case no government service was able to provide the package of services recommended in an IRP free-of-charge, the disabled person was allowed to find some other place and professionals capable of providing such rehabilitation services, pay for these services and have their cost reimbursed by the government. The actual refund was to be provided by a district welfare department.

A good law.

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2. “But the lamp-lighting man is asleep, my dear, and I cannot help…”

(Bulat Okudzhava) Last year, an IPR was written for us.

So far, I had been lucky: my boy was kept busy at the workshop at the Centre for Curative Pedagogics. So I formalised it all in a contract with the Centre and collected the receipts to confirm my payment of their fees.

Then I applied to the district welfare department for the reimbursement of these expenses. They refused to provide any refund.

I went to the Committee for Social Protection and Rehabilitation. They told me as follows: “Don’t you know that our laws are only “recommendatory”?

I have now been involved for two years in a lawsuit filed against the district welfare department. After the first court session, I received a telephone call from our “protectors and carers” at the Bureau for Medico-Social Expertise, who informed me that, since I had applied for reimbursement, they were going to raise the issue of changing my son’s disability category – to transfer him from Group II to Group III. My son – who, at the age of 22, was unable to live independently even for two days!

The Bureau has at long last now issued my son with his Disability Group II certificate (of unlimited duration) – as if this was some kind of bonus award (!), when he is of course entitled to it. But it took me four months just to prove that self-evident fact.

3. Why do I need all that trouble?

I want the State to start thinking about how much money it is actually prepared to spend, so that my son can live his life with dignity, have an occupation and feel needed, instead of being fed with neuroleptic drugs and kept locked up in a psychiatric “cage”. I want that law to work.

Part Five “MY HORSE IS WORN OUT, AND MY SHOES ARE DOWN-AT-HEEL…” (Bulat Okudzhava) So we submit applications for grants. We try to win competitions - and sometimes we even win…

We are gathering facts so that we can prove to foreign experts that our project is the most original, the best and most viable one.

Preparing for our “forages” with potential sponsors, we strive to look our best, to keep our backs straight, to be charming and alert: no-one would sympathise with us if we appeared weak and miserable.

In doing this, we draw on the time and strength allotted to us in our short lifetime for providing our handicapped children with love and care.

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Part Six “WHAT CAN I DO, IF I’M BLIND AND AN ORPHAN?” (Marina Tsvetaeva) Hey, people!

Look around you: all of you are tearing pieces from one another’s mouths. And we are doing the same.

We, the parents of disabled children.

We, whose hearts have turned black and shrunken from pain.

We are pushing our way to the “feeding-basket” – so that our children, instead of rotting alive, could live according to their modest abilities, each on his or her personal “small planet”.

But ALL these children are OUR CHILDREN! Where can we get all the “small planets” we need for them?

Part Seven “AND WHILE THE RED ROSE IS STILL ALIVE IN THE BEER-BOTTLE…” (Bulat Okudzhava) Everything passes away with time. We, too, some day will pass away.

There seems no point in restating the obvious: that there should be a real government programme, designed to organise properly the life of people with limited abilities. Where to find the money? It can be taken from the special fund established to support the implementation of the Federal Law “On the Social Protection of Disabled Persons in the Russian Federation” (No 181-FZ of 24 November 1999). Of course, the mechanism for implementing the law must envisage the issuing of individual rehabilitation policies, capable of covering the cost of professional rehabilitation services. Then any disabled individual would be able to get adequate help wherever there is the readiness and potential for providing such help.

It is vital that all the parents get involved. Once we are united, we can write programmes, help develop the necessary infrastructure and look for sponsors - because we all love our children. But all this is only possible within the framework of a realistic government programme.

Epilogue I am walking along the street; my son has run far ahead of me.

I am looking under my feet, and in rhythm with my steps I am moving my lips, which has become a habit with me: These are our children. For them, there is no place in this world...

And here is my son, running back towards me…

Hey, my country! Is anyone alive out there?

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Part Three

Out Tireless Ark “You find it very hard? But it is very easy!

The most essential moment in life is the present second, because the past is already gone, and the future is not yet here. The moment in which we live is the only one at our disposal. And the most essential person is the one who is in front of you now – there is no-one else here. And the most essential deed: in that very moment, to do exactly what that person needs.”

Metropolitan Anthony of Sourozh ”Ways of Christian Life”

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Listen…

But I have already tried to speak, and I found out something awful!

As soon as you say something, you feel the pressure of everything that you left unsaid. Everything that you failed to say - that is, forgot or did not want to say. And there is also the pressure of everything that I am not yet able to say, because I have not found the right words for it, or still have to think it over, or because it is scary… The pressure is heavy. And so it happens that the best things - among those that you do manage to say - are said about what has been left unsaid.

Yevgeny Grishkovets, “Rivers”

When I was preparing this book, I collected my (not very brilliant) thoughts and deliberated for a long time; met various people; and selected various quotations … but to start with I was afraid to take the pen in my hand.

And now the book is finally nearing its end, and there is time and space only for the most essential. So I’ll try to express this as best I can.

For many centuries we, human beings, have been speaking and writing about equality, but no-one seems to know what it really means, in exact terms.

In reality, nobody is ever equal to anybody else. And even our handicapped children are not equal to one another: they are all different.

But if we assume that equality should be understood in the sense of equal opportunities, and not as a one-for-all tray with free-of-charge fodder, it will become obvious that everyone, however severely handicapped they may be, is capable of accomplishing something, however little. And then the things that a disabled person CANNOT DO will no longer matter – it will become important what they CAN DO...

Is it because of our polluted environment, or global aggression, that some babies, while still in the womb, choose to become different and, by doing so, withdraw from the horrors of the world? It is, though, a fact that more and more children nowadays are born with congenital illnesses. I believe that it would be worthwhile if people could realise that disability is not a kind of deformity or a special mark, but only a form of suffering. It is a chasm which cannot be bridged by one person alone, in his or her attempt to get across to other people…

I view the help which is provided to a disabled person not as a sacrifice or a heroic deed, but as a bridge leading both ways: for the handicapped from impotence and despair to life; and for the “normal” – from superficiality to new depths and heights.

I believe that it would be worthwhile if we could try and make it possible for all of us to live together on this planet, instead of walling off part of it for “the different ones” to live in: at any minute, any one of us could also find themselves behind that wall.

S. B. 94

P. S. Once More About Love Please forgive my explanations, which are perhaps too long, and the repetitions, and the pauses: I had never written a book before this one. I am sorry that my voice sometimes sounds out of tune with the other voices. It seems to me, an inexperienced author, that one quiet voice can perhaps, at certain moments, become more audible than a harmonious whole, and so I asked the other authors, whose stories have created the spirit of our book, to allow me to become that voice.

So what can be added to everything I have already said on behalf of us all, before I end this book?

Each of us had been preparing to become a mother and devote her whole life to raising her child – who would be the most wonderful of all children. The birth of a severely handicapped baby hit us all like a horrible blast, sweeping away all our serenity. At first, and sometimes for a very long time, each of us remained buried under the heavy rubble of our misfortune. We were absolutely lonely, and cast away from the rest of the world – that outside world where no-one had ever experienced such pain or such horror. So, each of these stories is a history of pain, which will never subside during our lifetime here on earth, because our children will never be cured.

Each of these stories is a history of sweated labour – or “till the seventh sweat”, as we say in Russia: all the things that an ordinary child learns naturally, as part of the process of growing up, our children can achieve only through incredible efforts. But any victory, however small, makes us happy. And so, little by little, very slowly and in various different situations, we come to an understanding that any of our children’s successes, however unnoticeable to outsiders, is no small achievement, after all. And none of “our” mothers considers herself to be a zealot or a hero. Each of our stories is a history of very ordinary love, and love can hardly ever be absolutely cloudless.

With time, the families of disabled children begin to be drawn together. Quite often it happens that at first the parents simply wish to escape their loneliness, so they go out and drag along their child, who cannot be left alone, and there is no one to baby-sit. But when the mothers of such children get together, they no longer feel the need to shield their children from the contemptuous gaze of the excessively curious, but cold, outside world. And with the passage of time, the mothers learn not to feel shy about their children, and are no longer ashamed to reveal, in the presence of others, their love for their flawed offspring. And so each of our stories is a history of doing away with false shame.

Having recovered a bit from that first painful blow and having overcome our shame, we once again learn how to make friends, empathise and help. Our stories are histories of selfless mutual help, because adversity cannot be adequately dealt with in seclusion.

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When we develop this habit of socialising and helping each other, we realise that it all has become possible thanks to our children, who saved us from futile vanity.

And so each of our stories is a history of revelation.

Having learned to see, we can notice how much warmth and affection can be found in our unwise children, how helpless they are - and at the same time how generous in their love for those around them, and for the entire world as well. So every story is a history of discovery that one’s child is a complete person.

Gradually we come to the realisation that we have no right to waste a single minute of our life feeling irritation, envy or anger. So each of our stories is a history of liberation.

When we are liberated from envy, petty worries and hostility, we realise that there are many people out there who are no less deserving of empathy, understanding and help than the families of disabled children; and that it is our destiny to share our love with that big outside world and to warm it with our warmth.

S. B.

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P. P. S. Song of The Sea Diva, written by 19-year-old Alyona Trubikhina for the amateur show “Ocean Sea” You are passing me by, Sea ships, Sea ships, I know Where you come from – You, I know Your fate, Fate, You’ll soon Sink to the seabed, The seabed.

But some Will sail to the shore, The shore.

I’ll keep them, Keep them, And I’ll give them peace, Peace.

And they’ll Come home, Home.

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AFTERWORD TO THE SECOND EDITION

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Half-a-Year Afloat, or The Unexpectedly Far-Reaching Effects of Our Small Book

1.

In late August our first and only book – Our Tireless Ark…An Experience of Life in Adversity - arrived from the printing shop. I received a phone call from the publisher.

– The book is here, we can bring it over to you! Only today there is no-one to do the loading.

– …And how many packages are there?

– 37, I think.

– ???!!!

Thank God, they found someone to unload the truck, and so the thirty-seven packages of Our Ark found their home in my flat – near the door to the balcony and under the window.

At first it seemed that there were too many, but then the pile began rapidly to dissolve.

The first “professional” who saw our book was the writer Viktor Krotov 26. I felt uneasy, and ashamed of the misprints and errors that I had overlooked. I said that I was sorry that I, who was not really a writer, had done it all “as God would have it” – and not in accordance with literary rules. However, Viktor resolutely dismissed all my apologies: that was exactly how real writers wrote, he told me, and rules existed only for professional writers!

My fears and uneasiness were somewhat relieved, and towards the evening Viktor emailed to me his comment on the book – our first WRITTEN REVIEW! So, Our Ark sailed off on its voyage.

Since then I (and all of us) have received many responses, and heard many opinions.

These were mainly warm; although, of course, not everyone can find the strength to share in somebody else’s misfortunes and rejoice in their very specific successes. But I am very happy to hear that many teachers and therapists believe that this book should be included in students’ reading lists at universities and colleges, to help both students and their tutors learn something about THE LIFE of those whom they are learning to care for, beyond the medical symptoms which they display.

Hopefully, some day the stories artlessly told in this book may even touch the hearts of doctors, although when we suggested to the staff of one of Moscow’s special hospitals that they might read Our Ark, the doctors refused; however, the logopaedist did read it, and praised our fine literary style …

I am very grateful to all readers of our small book. Joy and ardent gratitude overwhelm me whenever I hear kind words about our work. To share this joy and express my

26

Viktor Krotov (b. 1946) is a Moscow writer. He leads creative writing classes for children and adults, including those with special needs.

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gratitude, I decided to publish a few of these reviews and letters here. But first I would like to mention one more little episode.

Even before we had any official responses, we - the newly-fledged authors – began to give out the copies to those closest to us, that is, the mothers of other children like ours. And one mother of a “very complicated” boy told me, after reading her copy, that all her life, as her son’s doctor had advised her, she had felt obliged just to be patient and had tried to reconcile herself to the fact of her child’s existence. But, thanks to our book, she had become aware of her right to love and value him as a person.

The words of that mother are no less important for me than the reviews written by famous personalities and the coverage by the media.

2.

Here are some of the reviews.

Viktor Krotov, writer: I can speak on behalf of two people – my wife Maria Romanushko and myself. We both read this book in one sitting, from the first to the last line.

This is a very good book.

I am not saying this to praise those who wrote the text and made this publication possible. What is there to praise them for? For long years of sustained and self-effacing efforts that produced a few pages describing their struggle against one or other severe illness?

Each of the authors continues to live “in the eye” of that “storm” – which is their unique experience, painful and happy at the same time. One can feel how hard it was for each of them to write about it. So - thank you very much for bringing yourself to do this, and for sharing with us testimonies that cannot be given by an outsider.

This is a book about children who are not “normal”. There are footnotes explaining their diagnoses, for readers without first-hand knowledge of such things. This is correct and helpful: we all need to know what autism or childhood cerebral palsy is, or the other afflictions that have shaped the lives of entire families. They are not simply medical conditions: each of these represents a specific condition of a child’s soul (and later on, a teenager’s or adult’s), and they all need our thoughtful attention.

This book is about our future. That future depends on whether we will be able to become truly aware of lives like those described in the book. It is about seeing, valuing and loving all of our children, and providing them with everything that every member of society is entitled to – but which is even more desperately needed by those who are faced with adversity.

This book is about the experience of “loving one’s neighbour”. About unconditional love – which is not always easy even for a mother, but how much more difficult it is for a stranger! And how necessary this is – because, unless we care for those children whose life is so difficult, we will be unable to become a healthy and spiritually developed society. We should all feel bitterly ashamed as long as any children like this are kept locked up at a prisonlike institution, with only one possibility - gradually to fade away. We must feel uneasy as long as the parents of such children are forced to carry their burden in solitude, and as they push hard against the bureaucratic barriers, which seem to have been put in place deliberately - to make their life even harder to bear.

I know many such children, and I can say with confidence that they are miraculous.

They are talented. We all need them to no less extent than they need us. But this is what the book is about (and it is about many other things as well). And the love that illuminates its pages is a genuine treasure.

Once more, I would like to thank all of you who have made a creative contribution to this book. For each of us there is something to think about – and something to learn.

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Yevgeny Lesin Nezavisimaya Gazeta [The Independent Newspaper], Ex-Libris, 2 November 2006: An Attempt at Happiness There is more than one introduction, and there are various explanations… The book’s editor, Svetlana Beilezon, is deliberating, and she cannot bring herself to begin the story.

Why? Here is why: “We are commonplace parents. It is not a punishment – it is simply that the dice have fallen this way. We are not making sacrifices - we simply love our children. (...)

These children are burdened with serious health problems.” First of all, of course, their mental health - although there are also other problems. Impaired motor function is also a medical condition. It means suffering for them all. And so they want to unite, and by uniting – which is only one amongst all the possible protective devices – to become walled off, to hide away.

That is why the beginning is so long.

But the book is really very simple. In contains stories written by parents of disabled children - their personal accounts. The children differ from one another, their diagnoses are different, but they all share a common destiny. They all are rejected - in one way or another.

Of course, we do not live in the Middle Ages, let alone ancient Sparta, but nevertheless their fellow-passengers on the underground tend to look away and try to get a seat somewhere far away. Because they’re frightened. And more importantly, no one is insured against such things. “It is not a punishment – it is simply that the dice have fallen this way...”

The parents love their disabled children, and they tell their stories in whatever way they can. “My world collapsed around me. Time broke into two halves: “before” and “after”. I wanted to be dead. No, this cannot be, that’s nonsense – schizophrenia is a terrible psychiatric disorder. But how can there be mad children, at this early age? What does this doctor mean?

My son - this boy, so like an angel - is mad?!”

Simple stories. Attempts at happiness. No escape. No punishment...

Once – it was nearly a decade ago – I happened to visit an institution for children who were blind or who had impaired eyesight. I was there on business. It was a presentation of books designed specifically for children with poor eyesight. There was a celebration, and the children sang. Another child nearby asked his tutor: “Who is singing? Our children or children on a tape-recorder?” “Ours”, she replied. That’s right – they are all ours. There are no children on any tape-recorder. The children on a tape-recorder are also ours.

Irina Dyachenko, mother of a 12-year-old autistic boy (Kaluga): Hello Svetlana!

I am not glad, I am ecstatic; I know you’ll understand, sometimes one feels hilarious like a puppy, and all problems are instantly forgotten! And for a very good reason – the books have arrived!!!

I could hardly bring myself to put down the book and write this reply to you. In the book I found so many feelings, and so many thoughts that had lived in my own head for a long time, that at first I even felt a bit ashamed of myself – for “inventing a bicycle” by repeating all this to you, all over again. But then I thought that it was not just about me, and not about any mother who finds herself in a situation like this and starts thinking along the same lines. No, there is something higher, purer and more complex than these underlying causes, something that binds and draws together all those who happen to share such ‘thoughts - movements’, ‘thoughts - air’, ‘thoughts – hope’, and ‘thoughts – dreams’: of oneself, of one’s children, of people close by and far away, of the most important things and of things I

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have always failed to understand - and still cannot; this feeling is very much there! I hope that you, too, will derive some benefit from my exaltation and all these exclamation marks...

As far as the business side of things is concerned, several channels exist for distributing the book, and tomorrow I expect to be informed of the first results. The options are as follows: some copies will be bought by the Kaluga Library System (I would like to organise a special event, a presentation – whatever is possible); there will be a talk with representatives of the Diocese, I have no doubt that they will agree to help; and there is also a charitable organisation that can provide money for purchasing the book and then distributing copies among parents. The situation in our region is such that this book will be helpful to many in their determination not to give up, not to betray or hide a child (which quite often happens, through lack of information and the traditional prejudice that an abnormal child is a disgrace to a family), but to struggle on and not to despair. I think that later on other ways of distribution can be found, I want SUCH A BOOK to be read by many people. Although it has not set such a goal, it is indeed capable of changing society’s attitude to disabled persons.

Igor Alenin, Editor, the journal Obshchii Iazyk [“Common Language”]: I have wanted to say a special “thank you” for your book. I brought it to Moldova, and it found interested readers there. I wish you success in your work – for which, as I see it, the word “service” would be more appropriate.

Natalia Kaliman, Special education teacher, Director of the Diaconal Centre “Prikosnoveniie” [“Touch”] (Orenburg): This book is much needed and very useful. How important it is for parents to have hope and faith. Our organisation now receives letters from many faraway places in Russia. So much suffering and lack of understanding… A huge thank you to all who participated in the creation of this book.

Natasha Maslenkina (Ivanovo): Thank you for the book!!! It is really needed! I wheedled one extra copy out of Mama, just for my own use... “An Experience of Life in Adversity” – a telling title, an experience of changing perceptions… I am certain that this book is meant to be read by people at large. Not everything in it is indisputable, but I think that there is something for everybody. One must simply break through one’s inner barrier and read it from a different point of view - not compassion, but that of universal humanity.

Nikolai Aleksandrov, Radio Echo Moskvy [Echo of Moscow], 22 January 2007: British writer Nick Hornby’s son is autistic. Hornby published a collection of short stories by well-known authors, whom he had asked to contribute their works. The proceeds went to support the special school where Hornby’s son studies together with other autistic children. This book is also a collection of stories, but it was published here, not in more prosperous Britain. It is entitled “Our Tireless Ark…” edited by Svetlana Beilezon and published by The Narnia Centre. These are stories written by parents of children with mental and learning disabilities. The parents simply speak about their children, and about what has happened in their lives. Psychiatry in general and childhood psychiatry in particular – or 102

perhaps even more so – is a vivid example of the inhuman nature of Soviet society. Soviet psychiatric “nurseries” for mentally ill children were very little different from prisons. The parents of children with mental disabilities were doomed to despair, incomprehension and endless suffering. They had nowhere to turn to. Their children could not get adequate treatment – instead they were stunned with neuroleptic drugs and locked up behind barred windows. Nothing else. The changes that have occurred so far seem negligible, but they are real. This book is one of the signs that there have indeed been some improvements, however small. And the Moscow Centre for Curative Pedagogics is another such sign. Now, at least, it has become possible to talk, to bring together those who have the same troubles and suffering… Because help is more likely to come from them than from the State.

Veta Ryskina On behalf of the Moscow Centre for Curative Pedagogics: A quiet tap-tap at closed hearts The book was made possible by the joint efforts and talent of the parents of “our” children, the ones for whom the Moscow Centre for Curative Pedagogics was created and on whose behalf it works. We value the book not only in terms of its undisputable literary success, but as an impressive victory of the human spirit. We know only too well how much hard work is involved in the upbringing of a special child - a special person. The parents - or, sadly, the mother alone - must sacrifice all their time, strength, health and other resources, without sparing anything, if they want to provide such a child with adequate opportunities for developing, enjoying life, communicating with the world and feeling needed and loved.

What I have just said applies specifically to all the authors who have contributed to this extraordinary collection: they all are self-sacrificing, pro-active and loving parents. And, as if their lofty parental mission were not enough, these people have found the strength to tell the world about their children in such a way that can leave no-one indifferent. I appreciate that readers may respond in different ways: some might feel very warm and tender towards the “heroes” of this book – and towards children like them in general, whom up to now they may have regarded as something foreign and as inherently difficult to understand; others may admire the spirit of their parents; some will certainly weep over a particular page; while others might just shut the book at the very beginning, to spare their nerves.

One reads these stories all in one breath. The first feeling one experiences at the start is awe: the style of every one these novellas – without exception - is simply brilliant! Can they all be such gifted authors? But then it becomes clear that, although the stories reflect the fact that the people who wrote them are educated and articulate, this is far from being their most important feature. If a written story is a cry of the soul, if the pen is moved not by a disinterested hand but directly by love, tenderness, distress and pride, the result simply cannot leave anyone indifferent.

The book “Our Tireless Ark…” which is written by people whom we have known for a long time is especially dear to us, because nearly all of its heroes have spent a number of years – some more, and some less – within the walls of the Centre for Curative Pedagogics.

Actually, all “our children” – Mila Maziy, Ghena Akimov, Alyona Trubikhina, Yura Beilezon, Lyova Virin, Zhenia Leonov, Masha Staroverova? Kolya Filippov – are now adults, but for us they will forever remain children, just as they have remained children for their parents. And those victories, big and small, which are described by their mums and dads, have all been achieved through the determined joint work of their parents and the specialists who have dedicated themselves to bringing up these children – the teachers, doctors, psychologists, logopeadists, art therapists and other members of our Centre’s staff. We have been very happy to read that in the lives of many children their acquaintance with the Centre for Curative

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Pedagogics represents an important and sometimes even decisive stage in their development and adaptation to life in society.

The parents’ stories are all permeated with true and vibrant feeling. There is no sense in retelling here the details of their stories – the stories of love and struggle, disappointments and victories. We hope that this book, which is modest in size, will become a momentous event not only in the lives of families raising special children, but - however grand it may sound - in the life of our society at large, which is still a long way from being tolerant. Its significance for parents is expressed in the subtitle - An Experience of Life in Adversity; and as for society …

Last summer one of our mothers travelled with her “special” girl to a neighbouring country – a former USSR republic. They were stopped by the border service officials because her daughter’s original birth certificate had been left behind 27. The girl’s mother writes of her feeling of helplessness during the confrontation with those merciless officials and transport police: she was fully aware of being up against a hostile and insurmountable wall. But then something quite unexpected happened: “And all of a sudden my smart girl began to forcibly open up the hands of these people – one by one – and to tap her finger against their palms. That’s how she had been taught to talk to people at the Centre for Curative Pedagogics – to tap every word on the palm of somebody’s hand, syllable by syllable. The border service officials were completely taken aback. The situation was nearly comical… Masha just walked from one person to another and opened their palms. The train was ready to leave. And at that moment the astonished august lady suddenly said: “All right, we’ll let you cross the border”.

This funny episode seems to me very significant. “Our” children are poorly understood by people who are not familiar with their problems. They have been kept under lock and key for a long time, they have been out of sight and out of mind. However, society’s attitude to them may change if they get an opportunity – through this book, and other good books yet to be written - to knock at people’s hearts, just as that little girl was tap-tapping with her little finger on the palms of those big and powerful people.

The Presidential Executive Office of the President of the Russian Federation (Letter No A26-05-39205 of 22 February 2007) V. D. Matveev, Deputy Director, Presidential Directorate for Communication and Public Feedback: Thank you for your letter and the book offered to the President of the Russian Federation.

The book has been delivered to the Library of the President of the Russian Federation.

3.

The world is full of wonders. And one of the wonders is that our modest book, with the help of many good people, has found its way to readers. Another wonder is that, precisely when the first edition had nearly sold out, money was found for a second one, and so you are holding in your hands the new “Ark”.

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Under the visa-waiver agreement between Russia and that country, although the child’s name and age were entered into her mother’s passport, she needed to produce her daughter’s birth certificate to confirm her identity and citizenship.

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4. …In a boat made of a melon’s skin He sailed along an empty river, A swan’s feather was his oar, And his melon-boat was faster than a ferry.

(A children’s song) 5.

We are sailing on!

S. B.

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About the Editor Svetlana Beilezon is the mother of two grown up children and lives in Moscow. She worked as an editor in publishing for more than twenty years, and in recent years Svetlana has been actively involved in projects addressing the issues of rehabilitation, access to education and equal opportunities for handicapped children and adults. As a member of the InterRegional Organisation Doroga v mir [Road into the World] set up by parents of children with special needs, Svetlana works in close contact with Russian social services and NGOs developing programmes for the disabled.

For this book, which she has compiled and edited, Svetlana wrote the introduction and postscripts, commented on the stories written by other parents, and told her own story about raising a boy with special needs.

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Acknowledgements The Editor would like to express her special gratitude to Mr David Brummell CB for his highly professional editing of the English version of this book.

“Our Tireless Ark…” has a long history, and it has emerged in its present form owing to the joint efforts of many people. First of all, there are the parents who wrote the stories of their children that made up the fabric of this book, and so I thank them all for their sincere and courageous contributions. Some of their children - Vasilii Maslenkin, Lev Virin, Yuri Beilezon, and Nikolai Filippov – kindly contributed their drawings to serve as illustrations.

The editor and authors are deeply indebted to the specialists and administrative staff of the Centre for Curative Pedagogics (CCP) in Moscow, who for many years have been helping our children in their growth and development, and helping us, the parents, to appreciate their unique personalities. So we must pay tribute to the work of wonderful therapists Nadezhda Morgun and many other professionals with whom over the years we have established very personal bonds. Ima Zakharova, a CCP’s special education teacher, provided us with accurate descriptions of medical symptoms and definitions of diseases.

We must thank Nikolai Razdobarov, Director of Moscow Technological College No 21, who opened there, with the support of the Moscow City Department of Education, a special training department for the handicapped. So, after many years of attending therapy sessions at the CCP’s workshops, our children now have opportunities for acquiring vocational skills and further social adaptation. They are supervised in their studies by tutors and psychologists, who are always by their side in the sewing, weaving, design-and-printing, and carpentry workshops; without this continuous care and assistance our children would have been unable to cope with the curriculum.

Since their childhood, some of the heroes of this book have been followed-up in their progress by the specialists of the Laboratory for the Methods of Teaching Emotionally Disordered Children at the Institute of Correctional (Special) Pedagogics in Moscow. This research team, now headed by Dr. Olga Nikolskaya, pioneered the study of the psychological aspects of the autism spectrum disorders in children, and so we are very grateful to them all.

Special thanks are due to researcher Igor Kostin, who kindly contributed his advice concerning terminology.

A very important role in our children’s development was played by the staff of the non-governmental rehabilitation centres ‘Living Thread’, ‘Our Sunny World’, ‘Kroog’ [‘The Circle’], and the Moscow Equestrian Sports Club for the Disabled. We also wish to thank the Principal of Secondary School No 14 in Ivanovo, Olga Krylova, who accepted Vasya Maslenkin as a mainstream student, and to Vasya’s teachers, for their confidence in his abilities. Indeed, we owe a huge debt of gratitude to all the teachers who taught our children at various times in their lives, in class or at home.

Invaluable support was provided by the staff of ‘The Narnia Centre’ in Moscow in preparing for publication and issuing the two successive editions of ‘Our Tireless Ark…’ in Russia. We are particularly grateful to our book’s first editor, Anna Godiner, who helped to 107

launch it on its far from easy journey. The book is now available to readers in English and German, and for this we thank translators Anna Yurasovsky and Ganna-Maria Braungardt.

Designer Lisa Prudnikova created the visual image of ‘Our Ark’. Gennady Kiselev helped with the translation of the quotations used as epigraphs On a personal note, we would like to thank Maria de los Llanos and Mikhail Rudnitsky for their untiring involvement and encouragement, and for their help in establishing important international contacts. Our time-consuming work on the English and German editions was made possible by Mikhail Finkelshtein and Mila Margulis, without whose generous support I would not have been able to achieve what I set out to do.

Our deep love and gratitude are due to Jean Venier, the founder of ‘L’Arche’ and one of the initiators of the Faith and Light movement that is now spreading across the globe. Our lives have been changed forever by the Faith and Life community in Moscow, which has united our families, and so our children no more feel rejected by the world, and the world, for its part, is becoming increasingly aware of the value of their singular qualities.

And finally, we are grateful to all of you, our readers, who now share with us the experiences of this stage of our journey…

Moscow February 2009

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About the Children The years of our heroes’ childhood and youth coincided with a turbulent period in Russia’s history - perestroika followed by the collapse of the USSR and subsequent transition towards a different economic and political system. Despite many economic hardships, this was also a time of great hopes - many of which have indeed been realised. From the late 1980s onwards, there emerged various non-governmental organisations for the support and rehabilitation of the disabled; parents began to unite into associations to promote the cause of their children’s rights; and it is now possible for us to establish contacts with many people in other countries – all of which would have certainly been impossible under the old regime. Our children were often lucky to be among the first to benefit from all these new developments.

Most of them were born and now live in Moscow: Lev Virin (b. 1983); Milana Derevyagina (b. 1978); Tanya Topchan (b. 1988); Kolya Filipppov (b. 1985); Alyona Trubikhina (b. 1986); Ghena Akimov (b. 1981); Mila Maziy (b. 1990); and Yura Beilezon (b.

1980).

Vasya Maslenkin was born in 1992 in Ivanovo, a province capital on the Volga to the east of Moscow, where he now studies at a mainstream school.

Masha Staroverova was born in 1983 in Astrakhan Oblast in the south of Russia, and later, as a teenager, came to live in Moscow.

Zhenia Leonov (b. 1989) is a resident of Dmitrov, a small town to the north of Moscow.

We grieve for Seriozha Kolesov (1975 – 2004) who, sadly, is no more with us – and we cherish his memory…

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Note on the Organisations The Regional Charitable Organisation ‘The Centre for Curative Pedagogics’ (CCP) was founded in 1989 in Moscow on the initiative of parents and special educators to serve as an alternative to the government system of special institutions and to provide help to children officially deemed to be uneducable. The Centre’s ideology is based on a comprehensive approach to rehabilitation, which combines medical therapy (the ‘curative’ aspect’) with special teaching methods and social adaptation (the ‘pedagogic’ aspect). Besides, the CCP implements training programmes in relevant fields for specialists working in the regions; promotes the creation of similar centres across Russia; its other areas of activity are research, publishing, and also legal and human rights issues. For more information, visit the CCP's website: www.ccp.org.ru The Institute of Correctional (Special) Pedagogics of the Russian Academy of Education (founded in 1929) has been, for many decades, the USSR’s major centre for the study of the handicapped and the methods of their evaluation, education, and upbringing. Some of the heroes of our book were helped by the specialists working at the Institute’s Laboratory for the Methods of Teaching Emotionally Disordered Children. For more information, see the Institute’s website (in Russian): www.ikprao.ru Faith and Light is an international support movement, founded in 1972 in France, that unites people with developmental disabilities, their families and friends, and it has become a living proof that their alienation caused by society’s distrust and prejudices can be successfully overcome. Russia’s first Faith and Light groups appeared in 1990 in Moscow (see www.vera-i-svet.ru); they have stemmed from the bigger ‘tree’ that now has its roots in more than 75 countries all over the world. Presently, there are nine such communities: ‘A Candle in the Wind’, ‘Strange People’, ‘Friday’, ‘Awake and Sing’, ‘The Little One’, and ‘A Small Tree’ (in Moscow); ‘Sunflower’ and ‘The Meeting’ (in Podolsk and Pushkino, small towns near Moscow); and ‘Faithful Friends’ (in St. Petersburg).

The non-governmental organisations Living Thread (see www.livingthread.ru) and Our Sunny World in Moscow offer comprehensive rehabilitation programmes to children and young people with developmental disabilities. In addition to their other aspects (medical therapy, special education, psychological and social adaptation, animal therapy, art therapy and crafts workshops), the core element of all these programmes is horse therapy (or ‘hippotherapy’ – from Greek ‘hippos’ – ‘horse’), known for its unique rehabilitative benefits for the disabled. Besides, these organisations host summer rehabilitation camps where the children can stay with their families and enjoy all these activities in a rural setting. In 1999, some of Living Thread’s activists established the Moscow Equestrian Sports Club for the Disabled (see www.hippotherapy.ru (in Russian).

The Inter-Regional Charitable Organisation “Geront” (Moscow) organises sports and leisure activities for the disabled, as well as for young people from high-risk groups. Some of our children participate in its drama and art-therapy projects.

The Regional Non-Governmental Organisation ‘Kroog’ exists since 1989. Its main goal is to promote social adaptation of the handicapped through developing their creative potential (see www.roo-kroog.ru (in Russian).

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