Anna Visloukh - A Thunderous Silence. Raising an Autistic child. My True Story

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 dermatitis 3 3 Atopic dermatitis (neurodermatitis) is a genetically determined skin disease, manifested by chronic inflammation of the skin, causing severe itching. Atopic dermatitis is one of the commonly diagnosed skin diseases that occurs most often in childhood. 15% out of every thousand people suffer from dermatitis. Atopic dermatitis is a hereditary form of allergy. The disease is often associated with a personal or family history of allergic rhinitis, asthma or hay fever. The trigger mechanism (in children) is the popular allergens entering the organism via mucous membranes and skin (these can be food, pollen, household allergens or epidermal offending agents). 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.