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

How could that be? I have just fed him! Once again, I go back to my son, take him in my arms and give him my breast. Once again he falls peacefully asleep, so I carefully put him back into his cot and take a few timid steps towards the kitchen before the room is filled with a demanding shriek. After a couple of days, I look like the limp heroine of an old fairy-tale who was charmed and did not care if she was free or in prison. The situation needs resolving, but where is the way out?

It comes about by accident. Brought to the point of total exhaustion after several sleepless nights and driven by some ancient instinct, I put the screaming baby beside me and feed him while lying in bed. Carefully taking my nipple out of his mouth, I let him lie beside me. Basically I fall asleep next to him. We sleep together for five full hours! My anxious husband peeps into the room more than once to check if we are still breathing. I do not hear him, but I still wake up, and my son sleeps on for another half an hour. We accidently find a solution, and my son will sleep together with us until he is five years old. (See Appendix 1.)

I finally go back to normal life, and not just because I can now sleep properly. Yes, this is important for a woman who is nursing her child, for the mother of the family, who in addition to taking care of the newborn is also responsible for the rest of the household. Every day my husband is out working to pay the bills.

My daughter, although she is still small, soon gets involved in raising her new brother. However, we have no good old grandparents to help us, no miraculous automatic washing machines, nor magic disposable diapers, or slow cookers for baby food… In those days, it isn’t easy even to find good foodstuffs, but we have to deal with what we have.

The first days after leaving the maternity hospital look the same in every family: sleepless nights and greyish sunrises when you want to sleep so much you almost faint; dirty diapers soaking in a bucket with laundry soap; green antiseptic that spills onto the carpet; fingers sore from washing, nipples sore from nursing, and the stunning, mind-numbing fatigue… This passes, too. We are attentive to every new movement the baby makes, monitoring each achievement.

The first time he smiles, the first time he grabs my finger, the first time he reacts to a rattle, these are his baby feats. My own feats are more modest. I run around doing the washing, cooking, taking him out for a walk, and cleaning; I am swirling around in the maelstrom of a new life subordinated to the rules and regulations of the new owner of my fate, our supreme commander, whose instructions have to be obeyed immediately and without question.

But there, outside of the secure and warm walls of our house, the enemy cavalry are already lying in wait for us, just waiting for a signal from their chief to embark on their campaign of destruction.

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 hydrocephalus 2 2 Hydrocephalus is an abnormal increase in the cerebrospinal (spinal) fluid in the cranial cavity, a disorder in cerebrospinal fluid dispersal and circulation or its excessive secretion. This causes increased pressure inside the skull. It can be due to the adhesive process caused by neuroinfection, head trauma and brain tumors, or congenital malformations of the brain and its membranes. Newborn children with hydrocephalus exhibit a characteristic increase in the head size, the veins on the skull become more obvious, and the eyes close up like a setting sun. The head circumference, increasing gradually, can reach a gigantic size (a cranial circumference of 60 cm or more). .»

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.»