AВ Thunderous Silence. Raising an Autistic child. My True Story
Anna Visloukh
Nowadays in Russia there are no statistical data that would reflect how many people in autism spectrum have managed to graduate from higher educational establishments. Does anybody, beside specialists, know about their existence at all? This is the first success story of a person in autism spectrum. With the help of his family he has turned from a child diagnosed as ’retarded’ into a student of an American college. The story is written by his mother.
AВ Thunderous Silence
Raising an Autistic child. My True Story
Anna Visloukh
The names ofВ the characters have been changed.
Any similarities are purely coincidental.
© Anna Visloukh, 2021
ISBNВ 978-5-0055-8075-7
Создано в интеллектуальной издательской системе Ridero
Prologue
AВ mother was asked,
В«Which ofВ your children do you love the most?В»
The mother replied,
В«The little one until he growsВ up.
The sick one until he is healed.
The one who has left home until he comes back.
And all ofВ them while IВ am still alive!В»
I often try on other people’s lives. I like to look through the windows. Through other people’s windows. When I sit in a bus travelling through the city in the evening, my eyes follow every window glowing in the dark. What kind of people live there, I wonder, and I come up with stories about them. Just now, a shadow flashes in a window, and I already know that she is a single woman and she has come to draw the curtains. She will now take off her slippers and make herself comfortable in her armchair. She will drink hot tea and read her favorite book. Or perhaps she will watch a movie. An old one, from the Soviet era, or maybe a Hollywood one made before the war. Her apartment is so cozy and quiet as though angels themselves were flying under the ceilings. So what if she is single, who cares? Personally, I envy her…
Oh, Lord, what am I talking about? What if a real lonely woman, who’s cried into her pillow many a night, heard me now! No, I am not being ironic, I am hiding behind these stories. And it’s not their lives I am fantasizing about – it is my own one, so that for a short time, for the few seconds when I see someone’s silhouette there in a window, I could live this invented life so different from mine. I am drifting in the darkness like an ice floe that’s broken away from the mainland. And now someone else’s life is moving away from me, to the other coast…
I also like houses. Not high-rise anthills, but old near-sighted cabins out in the forest. Can you imagine how quiet it would be there? Only the cat purring loudly, and the firewood crackling in the stove. And no struggles at all! Oh please, just let me go there, for a couple of days! But who am I begging? I would never leave, even if I could… It’s just a dream, and that’s all there is to it. Here is the window of our apartment. It is lit up. They are waiting for me there: my husband, my daughter, and my son.
1. I Beg A Saint for a Miracle and He Hears Me, but Still I Can’t Get a Simple Certificate
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, IВ recall running around asking all the psychologists and psychiatrists IВ could find for aВ certificate proving my son is dyslexic[1 - Dyslexia is one ofВ the most common learning disabilities characterized byВ aВ specific reading disorder. AВ person suffering from dyslexia has difficulty learning toВ read and write.].
Once IВ 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 toВ happen they need toВ be officially diagnosed with dyslexia and have all the supporting paperwork. IВ clung toВ this idea like aВ sailor clings onto the rope after he has fallen overboard inВ the stormy sea. What if that was possible? But how toВ get such aВ certificate? After all, Tim has not been officially diagnosed with dyslexia as aВ child. At that time, they would call it В«cognitive delayВ» and label aВ 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 aВ point would have been vital; his score just was not enough. Fatigue, stress, what can you say? Exams are exams.
Yet before IВ learnt the news, IВ had been standing inВ St. Nicholas Cathedral praying for aВ miracle. IВ begged the saint toВ help my child who had worked for two years preparing for the English language exam toВ get into this university. He had been preparing all byВ himself using his own original system based on every method and technique ofВ learning aВ 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 inВ aВ state close toВ trance. Yet IВ do not know yet if the Saint has heard my words or what else IВ could do toВ make him hear my prayers. AВ silent scream erupts from my heart, and for aВ second it hangs up inВ the air like aВ tangible cloud, over the icons, beneath the dome ofВ the cathedral. It is just as if IВ could see my desperate plea fly away toВ heaven. Somebody must hear itВ 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.
IВ dare toВ write this book teetering on the brink ofВ 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…»
В«No, no, let me give him socks at least!В»
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!
В«Anya, what are you saying?В» My husband gently touches my shoulder. В«What are you talking about? What socks? Give them toВ who?В»
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, IВ was not surprised at all as if IВ had been sure our family name would come back toВ us again. When IВ realized that IВ was pregnant for the second time, once again IВ had no doubts, IВ knew that this time it was going toВ be aВ son. My intuition did not fail me. Using the ultrasound, which was inВ general use byВ then, the doctor announced that it was going toВ be aВ 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».
IВ shook my head inВ disbelief, В«They will never let us. There is aВ queue toВ adopt such sweet babies.В»
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?»
IВ silently replied, В«Yes, IВ am inВ pain. IВ think my soul is inВ pain.В»
2.В IВ Conduct an Experiment Raising My Daughter, and My Son Shows His Needs for the FirstВ Time
My soul is like aВ withered wound all over. If IВ scratch it lightly, pain comes up toВ the surface, just like litter inВ aВ puddle inВ spring. It will torment me for aВ long time, but gradually the pain will grow dull and leave my consciousness, like aВ scorching sun going down beyond the horizon, so that the earth becomes immersed inВ the cool ofВ the night.
I plunge myself into everyday household chores, which brings me back to reality and does not allow me any self-pity or guilt for anything when I finally accept my weaknesses and inability to make a complicated decision that will heal my soul. Many years later I will tell my story to a priest. He will be wise, he’ll explain to me in simple terms why things happened as they did, that there was no other way out of that peculiar situation because I was destined to go through another ordeal.
The first two days flash by us like pages of a tear-off calendar. We seem to be in the middle of a euphoric maelstrom, and we have no rhythm yet to our daily routine. We don’t fully understand what is going on around us and our routine chores have not yet become dull and monotonous, as we are still celebrating our new arrival. All of us: my husband, my six-year-old daughter, and my sister who happens to have arrived in our town on a business trip, happily ignore the daily routine and just keep staring with delight at the tiny wrinkled face of the boy sleeping peacefully in his cot.
We put aside all the things we are to do, we cannot have enough of this little miracle. Nine months ago, it was an ugly tadpole with a tail, and next… consult a textbook on biology. Everybody knows how it works. Now he is a fully formed child, a Tom Thumb, contemplating our emotional gestures with a serious look on his face, almost like an alien that has landed in our house graciously accepting the enthusiasm of these odd earthlings, «Come on, I have arrived here to stay for a long time, not just to visit; you’ll have plenty of time to get used to me!»
В«Grow up soon, my little boy,В» my husband tells him with deep affection. В«We will go fishing together.В»
I find it really funny. I try to imagine our baby with a fishing rod in his hands, but without success. I cannot even imagine the day when he will take his first steps or hold something in his hands, it all seems so far off. It is hard to believe that this day will ever come, because my life has turned into a never-ending cycle of changing nappies, feeding, washing, of sleepless nights when the baby cries. I begin to think that this will never end…
However, here’s living proof that time flies running around, it’s my six-year-old daughter Masha. The first month after her birth seemed endless, and even brought me to the blasphemous thought that flashed across my brain, still in flames after a breast surgery: do I really need all of this?
IВ came from aВ large town toВ the village where my mother-in-law lived, and planned toВ go into labor there. My mother had died two years previously, and IВ was terribly afraid toВ stay on my own, without support, as IВ had no other close relatives. The village maternity hospital had an excellent reputation, even among women from the city. It was aВ place where women came toВ give birth if they had the right connections, because at this time, generally speaking, pregnant women could end up lying inВ corridors because there were not enough beds inВ the wards, and no baby left the hospital without staph infections.
The stories about things that could happen toВ you inВ hospital were worse than anything you could see inВ aВ horror movie; babies got neglected and fell onto the floor, and women about toВ give birth had no help, so they had toВ deal with everything themselves, apart from cutting the umbilical cord. The nurses insulted women telling them the pain was the result ofВ sexual pleasures and promiscuity. The poor women and newborns were treated so badly that it truly chills the soul.
My daughter was born as tiny as my son, less than three kilograms. I was lucky; a relative of my husband was on duty that night, and she was an experienced midwife, so everything went more or less smoothly. I wasn’t sure if I had milk or not, but I produced enough and the child went to sleep.
The girl and IВ were brought home with triumph. It was decided we would stay with my mother-in-law while my husband was renovating our city apartment. All my knowledge about nursing and raising aВ child under one year ofВ age was based on articles from В«Working WomanВ» and В«HealthВ» magazines. Also, there was an old book titled В«How toВ Nurse aВ BabyВ», which according toВ the year ofВ its publication had been aВ present toВ my mother when IВ was born.
IВ tried toВ study that book, too, because IВ had nothing else toВ rely on. IВ remember the book said that before nursing her baby aВ mother should sterilize her breasts, put on aВ headscarf and aВ face mask (why not wear aВ gas mask as well!). She should sit on aВ special chair and put her feet on aВ special bench. After that the nanny (what?) would hand the baby over toВ her. The mother was toВ nurse the baby for twenty minutes, not aВ second longer. The baby should be fed strictly every three hours, and at night there was toВ be aВ six-hour break, and if the baby woke up, it should be given water toВ drink.
All the misfortunes IВ had toВ go through inВ the first few weeks after the birth ofВ my daughter could have been avoided if IВ had paid less attention toВ the recommendations ofВ our well-intended pediatricians. Up until this day IВ shudder recalling this episode ofВ the so-called horror film В«My First Child and the Experiment ofВ Raising Her.В»
