Читать книгу A Thunderous Silence. Raising an Autistic child. My True Story - Anna Visloukh - Страница 3

My son swiftly taps away on the keyboard. Perfect lines of English words pop from his fingers and onto the screen, and I don’t understand the half of it. I come up to the window. A dull December night brings snow that is as sparse as if borrowed from a scrooge. I hear late cars parking softly, I see bare tree branches trembling slightly in the icy wind… A new day is about to begin, and so is our life. Our new life.

Ten minutes ago, Jonathan, a curator of Full Sail University, a subsidiary of Universal Studios in the USA, sent us a letter saying that my son had become a student of this famous institution. Well, what’s so special about that? Every year thousands, if not millions, of young people become students, all over the world, and some of them study abroad. The problem is my son is not like others, even if this has ever been my wildest dream… I wished he could have been just like everybody else. An ordinary boy first, and then an ordinary young man: football, college, girls… But my son is a dyslexic boy with autism spectrum disorder (ASD).

Now resting my hot forehead against the frozen December window glass, I recall running around asking all the psychologists and psychiatrists I could find for a certificate proving my son is dyslexic1.

Once I heard that while taking exams dyslexic children abroad are given either an extra half point or an amended task taking into account their disability. However, for that to happen they need to be officially diagnosed with dyslexia and have all the supporting paperwork. I clung to this idea like a sailor clings onto the rope after he has fallen overboard in the stormy sea. What if that was possible? But how to get such a certificate? After all, Tim has not been officially diagnosed with dyslexia as a child. At that time, they would call it «cognitive delay» and label a child just like that, without digging into unnecessary details.

For days I went from one specialist to another. Some of them had known my son since childhood and understood his problems, but nobody would give me a certificate. However, the psychoneurological hospital suggested taking him in for a medical examination, and afterwards, maybe there would be a chance… No chance! Go examine yourselves before you get my child!

«We’ll get along without them, will we, Tim?»

I look at him with hope. It is me, not him, who needs support right now, who needs to hear that he is sure he’ll pass the exam even without that darned certificate.

«Well…» Tim hesitates. I see he is at a loss because I have promised him that certificate! I feel powerless, too. Over the years I used to solve so many unsolvable tasks, but this time I have failed.

«If I don’t score enough points in the reading section, I will make up for it in the conversation exam. That has, after all, always been my strong point.» Tim says it again and again calming himself, and me as well.

However, after Tim took the examination, it turned out that this half a point would have been vital; his score just was not enough. Fatigue, stress, what can you say? Exams are exams.

Yet before I learnt the news, I had been standing in St. Nicholas Cathedral praying for a miracle. I begged the saint to help my child who had worked for two years preparing for the English language exam to get into this university. He had been preparing all by himself using his own original system based on every method and technique of learning a language he could find on the Internet. And that was his second attempt.

«Dear Saint Nicholas!» I addressed the saint as the person holding the keys from our future. «Please, do help him, I beg you! He has been working so hard and he really wants to study there! It is his dream. It won’t be any trouble for you, you can do anything! You, too, had a mother once…»

This prayer, so different from the classic one, puts me in a state close to trance. Yet I do not know yet if the Saint has heard my words or what else I could do to make him hear my prayers. A silent scream erupts from my heart, and for a second it hangs up in the air like a tangible cloud, over the icons, beneath the dome of the cathedral. It is just as if I could see my desperate plea fly away to heaven. Somebody must hear it now!

The computer screen glows steadily and seems even friendly. Jonathan reaffirms it that my son has become a student. And as to the missing half a point… my prayer to Saint Nicholas has got through! Oh, the people living there, in that terrifically distant America, are so wonderful. I love them with all my heart, and not just them, everybody on our planet! Looking at my son discussing with Jonathan what documents we need to send to him, I clearly understand that I must write a book about all this.

A book – about what exactly? About my life? Who would be interested in that? How can I help my readers to avoid these absurd twists of fate that over all these years, grinning gloatingly, have been chasing me down tugging at my dress, screaming, «We are not done with you yet, there is so much more fun. Wait!» But the idea that perhaps my stories can help someone never leaves me and would not let go. Gradually, this idea comes together like a neat little parcel labeled «Son». The whole «User’s Guide» can be found inside. Who is it for? For desperate mothers, driven by circumstances, stripped of last hope, just like what I used to be. And so I dare.

I dare to write this book teetering on the brink of self-irony and tragedy, the serious and the ridiculous, the absurd and the random, prophecies and dashed hopes, expectations and losses.

Far away dogs are barking hoarsely, distant voices are shouting commands in a strange language, but I understand them. They demand we stand in a line, we need to go somewhere… but where, why? I see my son being taken out of the crowd. I can’t hear what the guard is saying, but somehow I come to realize they are taking us away. Lord, where are we? Fear threatens to suffocate me and breaks out as a silent groan.

I scream but I do not hear a sound, only the barking and the guttural commands of the strangers hitting us, pushing people into a formless speechless mass. Oh Lord, where have they taken my son? He will never survive there, in the snow, in the woods, in his lacquered leather shoes put on bare feet and his light leather jacket… How do I know he is being taken out to the forest? I, too, will be taken there, but I’m strong. I will survive, but he… he is but a boy! How can they do this to him?

«What are you doing?» I shout, choking with horror. The cry rips my mouth but there’s still no sound going out, they don’t hear me and take him farther and farther away.

«We are prisoners,» someone says nearby. «Leave your illusions behind…»

«No, no, let me give him socks at least!»

Somebody grabs me, and I fight to escape, but I can’t see who is holding me. Suddenly, there is nobody around me, and I blindly wander, bumping into mystic transparent walls. Tim is there, behind the wall, obedient and silent. I will not give up on him! I throw myself against the slippery wall that seems to be made of ice. I push further, cling to it as close as I can and see it melting from the heat of my body. Just a little bit more before he is gone forever… Hey! Somebody help me! Give him the socks!

«Anya, what are you saying?» My husband gently touches my shoulder. «What are you talking about? What socks? Give them to who?»

Shuddering I open my eyes and realize it was just a dream. The boundary between the dream and reality is so elusive. These weird people, capturing us… was I a prisoner?

Do I need to break free from the illusion I’m all-important in my son’s life? Back there, in my dream, I couldn’t. And here, in real life, I can’t either. Just because…

We even scream together: my unborn son and I. I can hear it so clearly, his cry inside of me. The baby’s screaming because of pain and fear, and I’m screaming because he is in pain and scared. When the fear and the pain get doubled and tripled, and I come to understand that I can’t handle this horror any longer, the child takes off like a swimmer off his starting block (that’s how I imagined it, I swear), he pushes and… arrives in this world. He is off to start. One minute, two minutes, three minutes of a new life, and they get to outweigh the hellish eternity of labor. They race on, so light and weightless; my body still remembers their price but the pain is already receding. Thank God it’s over!

«Look, mommy. It’s a boy!»

The small purple something, looking rather like a piece of cloth hanging on the midwife’s arm and whimpering so feebly – is this my baby? How can it be him if I did hear his distinctive loud voice inside of me? Is this truly made up of my body tissue, my blood, my veins, and my life? He is now my universe, my life.

My thoughts are confused, piled up on each other, while I am staying in bed for the due two hours after labor and I don’t realize it yet that these hours will be the most carefree ones for the rest of my life. The medics are busy taking my blood pressure, fussing around, asking me for my husband’s phone number, while my little boy and I are lying there as though in Nirvana already parted by nature, but not yet separated by people.

When I gave birth to my elder child, my daughter Masha, there had been no ultrasound to predict the sex of an unborn child. We could only guess. One thing that we knew for sure was that if it was a girl then we would name her after my dead mother. We had no idea how to name a boy. We discussed many names, but I didn’t like any of them.

So, when Masha was born, I was not surprised at all as if I had been sure our family name would come back to us again. When I realized that I was pregnant for the second time, once again I had no doubts, I knew that this time it was going to be a son. My intuition did not fail me. Using the ultrasound, which was in general use by then, the doctor announced that it was going to be a boy, indeed.

I didn’t realize it then that I would not see my son for another 24 hours. The next time I saw him he was wrapped up in a rough deep-gray starched swaddle supplied by the hospital. He was asleep and his eyes were shut. He was breathing so lightly that you could hardly hear him. Tiny, less than three kilograms, he showed no desire to eat.

Of course, he didn’t understand that his mother desperately needed his help to feed him! He tended to shirk responsibility from the very first day of his life, you see. In order to save me from mastitis the doctor brought me two abandoned babies. They were much bigger than my little one, and so for a week I fed all the three of them.

«Should I keep them all…?» I suddenly thought one day.

No, it was not me, it was my husband who mentioned it as a joke. «Come on,» he said. «Let’s keep them all».

I shook my head in disbelief, «They will never let us. There is a queue to adopt such sweet babies.»

So I didn’t dare.

«Forgive me,» I was thinking, looking at the nurse wrapping my tiny baby in the cute nappies brought from home, looking at my husband who felt guilty that at the last minute he had left my shoes behind… It seemed to me I saw myself from an outsider’s perspective, too, wearing giant leather slippers, getting into a taxi with my son in my arms, and asking myself who would be feeding the other two babies. Was that all there was to it?

«What’s going on?» my husband asked in a worried voice. «You are crying. Are you in pain?»

I silently replied, «Yes, I am in pain. I think my soul is in pain.»