Читать книгу A Thunderous Silence. Raising an Autistic child. My True Story - Anna Visloukh - Страница 7

I stop by the door to our apartment and lean against it, trying to put on a happy face so as not to frighten my son. The accident happened a few hours earlier, but I am still not quite myself. Even recalling the incident makes my heart pound, and my eyes get cloudy.

Okay, okay, just try to calm down. I unlock the door and open it slowly. I hear voices in the room. This sounds like English. Is it the radio? I am going to enter the room when I recognize my son’s regular voice.

«Dear listeners! Our program is about to start. Request any song you want!» he shouts triumphantly, lisping and burring a little, as if he really had thousands of listeners hanging on his every word. I freeze.

«Why don’t we listen to Beethoven’s Fifth Symphony?»

I hear the first chords of Beethoven’s «Ode to Joy» instead, and I realize that my son is playing it by ear. Not only is he playing it, but he is also singing along. But what language is it? I understand that it’s some sort of gibberish, but if you are not paying full attention, you are likely to think it is English. A perfect rendition! After a few lines, he stops and says, «You have just listened to a cute song! Beethoven’s Fifth Symphony, complete with lyrics! The lyrics are all my own. The next song is called the Egyptian.»

The next song is in oriental style, if that can be said about a song composed by a child who only started learning music a year ago. I am still standing in the hallway, afraid to move. My son is imitating the English speech, talking to himself in different voices. It is as though someone was interviewing people live on air, just like a real radio program, but such programs have only recently started airing on the radio!

Finally, he says, «And now we will play something dramatic and divine!»

«Dear Lord,» I think to myself, «everything in one pile!»

He starts with an almost identical imitation of the church service, a shrill voice begins to chant and the baritone voice of the «priest» picks up. He is so passionate about what he is doing that he only notices me after he has finished his final speech to his audience. «Dear friends, our program has come to an end.»

I was taking my daughter to a children’s sanatorium in the local town. Several years ago she had been diagnosed with a spinal problem, and the consequences could have been irreversible if we had not acted quickly. My daughter had to stay at the sanatorium for months and even attended the local school.

On that particular day our car skidded on an icy road into oncoming traffic, but the driver managed to wrench the steering wheel, and the car ended up stuck in a pile of snow in the ditch on the opposite side of the road. After recovering from the shock, the driver said, «That felt as if a giant hand had grabbed me from above and steered my car… There was nothing I could do about it.» I was shaking the whole way to the sanatorium and back home.

Luckily Tim wasn’t with me on that day. For a year before he started school, he stayed at home on his own because I had taken him out of kindergarten. The kindergarten was built for the children of the people working at the local factory, but by the early 90’s it was no longer working as it used to, and the children needed to be collected by 4 p.m. At that time I had been invited to be an editor in a new interesting newspaper, so obviously I wasn’t able to rush off and collect my son from the kindergarten. I had to rely on him behaving well at home on his own.

I must admit that the prospect of staying at home alone held no fear for him. He always found something to do. He played with his toys for hours, and kept himself entertained.

As to his love of music, here’s the story.

My daughter entered the music school as early as in kindergarten. One day a music teacher came to the kindergarten and chose two girls. At first I was very surprised: my Masha was tone deaf and always terribly out of tune. However, it turned out that she had a wonderful inner ear for music, and I was promised that by the end of high school she would be a top vocalist.

Perhaps not a top soloist, but a decent member of the choir, and it proved right. Masha and I used to walk to the music school which was a couple of bus stops away. Public transport was very unreliable at the time, and it was difficult to get a pram on the bus; Tim had only just been born.

I always wanted my daughter to play the piano, but her own desire was to paint, as I discovered much later. She was always a good and obedient girl, and we never came across any problems with her. If her mother suggested something then that was enough for her. So she attended her music school. I used to drag Tim along as well. Who was I supposed to leave him with?

My husband worked from dawn till dusk, and there were no relatives around. Sometimes I carried Tim in my arms or pushed him along in the pram. Once in winter when I was pulling my son along in a sledge, it overturned and the child fell out. My daughter and I were so engrossed in conversation that we didn’t notice we’d lost him for about 50 meters! I realized that the sledge had suddenly become suspiciously easy to pull, looked around and saw Tim lying silently in the snow waiting for us to remember him.

He was four years old when during one of the events at the music school my daughter’s teacher suddenly told me, «Your son has a real sense of rhythm. Bring him along to my classes. You all come here together anyway.»

«Yes, but he is only four,» I said surprised. «How can you teach somebody so young?»

«Never mind. I can see that he has talent.»

Our boy had started learning to play music before he was five years old. Music would become such a big part of his life and fill his consciousness so fully, that it would block out the rest of the universe to the point that nothing else seemed to matter. Music is the most important thing in his life, and everything else fades into insignificance. So, the teacher’s intuition clearly recognized the potential in her new student, and it did not only play a significant role, it changed his life and fate altogether. Sometimes it seems to me that music was waiting for Tim to choose it.

Over the following years, my son would prove me right choosing the paths that interested and intrigued him, not listening to adults who think they know what’s proper for him. He has not yet been diagnosed, and I don’t recognize any abnormalities in his behavior: kids are quite often stubborn and refuse to obey.

Nothing about his behavior is particularly unusual, not until one day when he is close to four years old. The child that used to love bathing suddenly refuses even to approach the bathroom. Every time I try to bathe him it is a nightmare. I would take him in my arms, talk to him to distract him, and carry him into the bathroom. The second he sees the bathroom door he would start to scream uncontrollably.

«Please son, don’t cry, we are only going to sail some boats!» I try to plead with him. «Look how nice the water is!»

He pays no attention to my words clutching at the door post to prevent me from taking him into the bathroom. Close to tears, I have to pull his hands from the doorframe, and we get into the bathroom. My husband has already filled the bath and put all the toys we have into the water, and then he holds out his hands to take the child from me.

«Give him to me quickly.»

The child is screaming his heart out, struggling and scratching, as if he were fighting for his life. As I start weeping my husband would tell me to leave, he would deal with the struggling child on his own. The cries are nonstop, but somehow he manages to wash our son in fifteen minutes, and they reappear in the room as if nothing had happened.

This behavior persisted over the following year, and then it just stopped. Neither we nor the doctors could give explanations for it. Much later I read about similar episodes in the books of several authors who had written about autistic children (e.g. Paul Collins: Not even wrong. Adventures in autism.) Back then we had never heard of the term «autism.»

One summer, we decided to take the children to the seaside. My son had already been diagnosed with atopic dermatitis3 and neurodermatitis.

That was another slap in the face, as we thought we had already cured his diathesis. In fact, his skin had been clean only for about a year, and then it all flared up again.

Tim needed a different treatment. It was no longer a question of merely alleviating the child’s suffering, he was to undergo a detailed medical examination to find out what the problem was and to have the correct medical treatment prescribed. The truth was that nobody really knew what to prescribe.

I had a feeling that the doctors were operating largely on intuition, as if they were searching in the dark. «Let’s try this drug, and see if it helps.» «Let’s put him on a new diet.» So we tried everything. One thing after another, but nothing helped, and sometimes he got worse.

One day our dermatologist told us with sympathy in her eyes, «I recommend that you take him to the seaside. Two to three weeks, no less, but a month would be better. It has helped many, even if only for a short time.»

So off we went. We went to Yevpatoria in the Crimea where we had friends. With their help we arranged for all of us to stay in a sanatorium right on the beach. It was a wonderful holiday in the company of our friends and their children. Unfortunately, the entire month of our holiday passed and we couldn’t make our boy get into the sea. We tried everything! We splashed around and swam before his eyes inviting him into the sea’s warm healing waters.

I was so depressed by this. We had come all the way to the Crimea specifically to get him to swim in the sea, but not even once would he get into the water. No amount of persuasion would change his mind. What were we supposed to do, drag him into the sea like we used to drag him into the bath? Obviously we didn’t. Only the day before we left, holding his father’s hands, did he agree to lie down in the shallow water and splash around for a little while. That was it.

That was the moment when I realized that our son would only do what he considered to be to his benefit. If there was anything suggested by whoever else, be it his parents, teachers or others, he would completely reject it or only accept it under severe pressure. Even under pressure, not always. I realized this, but I refused to accept it at first without reservation. Accepting this fact was a slow and painful process.