Читать книгу A Thunderous Silence. Raising an Autistic child. My True Story - Anna Visloukh - Страница 5

I am instructed to take the child to the clinic monthly till he is one year old. I am a responsible mother, and rules are obeyed.

One day we come to the pediatrician. They weigh the boy and measure him, they check if he can bend his arms and legs.

«You need to consult the neurologist!» the doctor tells me abruptly, as he makes notes nervously.

«Is there a problem?» I ask anxiously.

«Why are you new mothers always so emotional? It’s just a routine checkup!» The doctor slams the notebook with the medical records shut and hands it to me. «Go consult the surgeon as well, so he can register his opinion, too.»

Okay… if this is how it’s done… Tired and hungry, we go to the neurologist’s office. Today’s the day when the doctor only sees babies, so there is no chance of jumping the queue. There are about ten exhausted women with their babies in their arms who have been shipped from one doctor’s office to another. We stand there waiting.

My son is already showing obvious signs of impatience, he is about to start demanding. I have to ignore his demands as the queue in front of me is beyond my control. I know I can’t explain this to my baby, and I am well prepared to have to walk along the endless hospital corridors, trying to keep him calm by the international and timeless babies’ motif, «Ah-ah-ah! Ah-ah-ah!»

To my surprise, my little son merely expresses his perplexity a couple of times, and then goes quiet and begins staring meaningfully at the cracks in the ceiling that hasn’t been painted for too long. He seems deeply immersed in studying the peculiarities of the local clinic architecture. I freeze, I try not to breathe too heavily, so that no unnecessary movements disrupt my child’s progress in discovering the world.

Finally, we reach the cherished goal. The worn-out doctor begins by asking routine questions, and then after looking over the paperwork from the maternity hospital, she asks, «Was the labor rapid?»

«Well… Yes. Probably about two hours.»

«All right.» For some reason the neurologist does not seem happy. She takes out an ordinary tailor’s measuring tape and measures the circumference of my baby’s head. She goes back to the papers I was given in the maternity ward and speaks the words that turn the world dark before my eyes.

«The size of his head has sharply increased in just one month. This is most likely due to hydrocephalus2.»

That scary, strange word jumps into my brain and worms its way in like a cartoon worm digging into a cartoon apple. I immediately imagine a multi-headed hydra, hissing and spewing out flames onto my child, behaving in accordance with its name that hisses HYDRO-CE-PH-A-LOUS…

«So what does that mean exactly?» I cuddle my son frantically, as if trying to protect him from this… hydra, or whatever it is.

«Do not be so panicky,» the doctor suddenly softens. I probably look scared out of my wits! «Let’s keep him under observation for a month, and maybe he will go back to normal. A quick delivery, a possible birth trauma… You need to come back to me in a month. Without fail!»

So, the whole diagnosis is based on measurement with a tailor’s tape. Why does she bother us, and how can she make a connection between my child and some sort of hydra?!

After we get home, I free my son from his swaddle and leaving him on the couch I rush off to look through a medical encyclopedia. I find hydrocephalus there. Oh my God!

I have not finished reading this when I hear a scream behind me that pulls me out of my stupor. I turn around to see my son lying on the floor screaming his heart out. How could a one-month-old baby fall off the couch? This thought brings me back to reality as effectively as an ice shower. I rush over to him and feel his arms and legs: are they damaged? I decide that I will never give up and that we won’t surrender to any kind of hydra. Holding my son in one arm as he calms down, I fumble with the pages of the thick volume searching for the treatment.

«In order to lower the intracranial pressure, diuretics are usually prescribed, glucocorticoid hormones and glycerol are used. Surgical treatment of hydrocephalus in infants is done by building extra canals for cerebrospinal fluid reflux from the skull cavity.»

Okay, first we will try the medicines, but if that does not help, then…

«Yes, we will fix you, my little boy, so don’t cry!»

He is not crying, actually, just staring at me. He is sure that if his mother’s picked him up now then it won’t be for nothing, she’ll nurse him. He is probably thinking, «Good, she has figured out that I’m hungry. Oh, am I hungry! Just one thing: what is this, dripping on top of my head?»

I do not even notice the tears streaming down my cheeks. I have no idea yet that my trickle of tears will become a river of tears I shall cry in the long years it will take to raise our child.

A month later, after checking the size of my son’s head and examining the fontanel with a little lamp in a dark room, the doctor confirms her initial diagnosis. She prescribes Tim diuretics for six months. Even now there is no other treatment for this illness. The only other option is surgery, described by non-professionals as «inserting a tube.» This form of treatment is called a cerebrospinal fluid shunt. So we have to get used to living under this sword of Damocles, the threat of this cerebrospinal fluid shunt.

We start each day by giving our son who’s still so tiny a diuretic pill, and feed him only half an hour later. How can you explain to a baby why his mom forces something bitter into his mouth instead of giving the hungry little one something to eat? I would walk around the house with my son in my arms and talk to him, but he clearly does not understand me.

At first my boy would listen to me attentively, but after ten minutes he begins to show his frustration, and I need to kill another twenty minutes! I use any toys that happen to be around, it soon fails to help, and he would scream out loud insulted, not understanding the reasons behind my cruelty, never forgiving me. I play the piano for him to get through another five minutes. I park myself on the edge of a chair with Tim in my arms and play anything that comes to mind, fragments of music pieces or sometimes just incoherent sounds. Three times a day, for the following six months.

After a while, I notice that the baby’s cheeks and forehead are covered with red spots. At first they are pale pink, and then they become brighter and crawl menacingly all over his body.

«He has got diathesis,» a girlfriend tells me authoritatively when she comes to visit.

«So what am I supposed to do now?» I am perplexed, it’s the first time in my life that I come across this condition.

«Well… I think you need to apply some special mix, your doctor can give you a prescription, or you can just ask at the pharmacy.»

Having imagined the long queue we’ll have to bear to get a prescription, I decide to go to the local pharmacy. «Do you have anything for diathesis?» I ask. They give me a brownish liquid in a bottle, and I pour almost half of it over the child’s skin.

The next drug is zinc oxide cream, some other medicines follow, but the condition deteriorated. My son continued crying and scratching his cheeks and forehead. We ended up going back to the doctor. She listened to me for a long time until I finished listing all the drugs I had tried, and then she said, «There is one other option. It might take a long time but it is proven to help!»

For the next six months I worked so thoroughly I could have won the title of «Mrs. Scrupulous.» I ground eggshells into a fine powder, took some powder with the tip of the knife, added a few drops of lemon juice, and forced this mixture into my son’s mouth. When I started giving him porridge things became easier, because you could mix it up in the porridge. I kept doing this even without believing this could really help. Interestingly, it actually did! It took a long time; it was only near the age of ten months that my son’s face cleared itself and we could declare victory.

Also, six months later the neurologist told us, with obvious relief, that we had come off cheap and there was no need to insert a tube. It seemed to me then that the only indication of my son’s illness was his relatively large head, but back then we just had no idea what kind of future lay ahead of us.

I had no inclination that this minor scare would result in dire consequences for us, and alas, that such a serious illness never passes on by without leaving a trace. My baby would grow into a handsome boy with flaxen curly hair and blue eyes. He would not say a word for two years. He was almost three years old when he started talking. Strangers would take him for a girl, but he would proudly tell them in his defective tongue, «I am a boy».

I had no idea my boy had so many illnesses that he should have been put before a scientific symposium where a notable professor would be pointing to my child’s tiny body from head to toe, citing the illnesses that fate had bestowed upon my child.

At this time, I did not know that the hospital would become our second home, and that the pediatrician and the dermatologist would practically become members of our family. Back then, I didn’t know that I would end up knowing reference books on childhood illnesses by heart, that I’d become fluent in the names of diseases, symptoms and treatments like a professional, and some doctor would even ask me if I had medical education.

Quite so. By the time my son was diagnosed with so many conditions I had begun to realize I must get to the root of his problems myself.

I read everything that was available on the subject. There wasn’t much in the early 90’s, book publishing was not a priority at that time.

But still, literally piece by piece, I collected all the information that could be useful to me in the fight for my child’s wellbeing, and sometimes even for his life.

Looking back, I feel like I am clearing away the debris of my memory, pulling pieces out of its corners, crumpled like candy wrappers, frozen in time. Almost like going through old black and white photographs, which once again have become fashionable these days. Back then it was simple: you were walking down the street and a photographer took your picture. Sometime later you received the photo by post!