Equine therapy for autistic children. Photo: nvinder.ru
Polina believed in God since childhood. In her youth, when she was making her first steps in church, she sang in a choir, volunteered and took part in the Orthodox youth movement. Later on, when she got married and had a son, they attended church as a family and took their little son to Communion.
The parents were happy, Luke[1] was growing up as a curious and smart child. He began to talk at one year and a half. He especially mastered saying such words as “yaf” (giraffe) and “yat’” (derived from the Russian word “miach,” meaning “ball.”—tr.). He played soccer, quickly put together the rings on the stacking toy and pieces in the puzzles. He also loved to listen to songs and books and “assisted” his mom around the house—crawling around with the mop or a vacuum cleaner, peeling carrots, watering plants from his toy watering-can, and changing batteries in his toys.
But at some point, Polina began to notice that her Luchik stopped learning new words and later he began to forget even the ones he had already mastered. Her family and their loved ones tried to quell her worries:
“But you know, boys often have speech delays…”
“But he’ll begin by saying complete sentences later…”
“Look, our friends’ son didn’t speak and then he took off by reciting poems in two languages…”
People often arrive at self-complacency in such cases.
But it couldn’t still the observant mother’s suspicions. She took her son to all the required medical professionals: pediatrician, neurologist, psychiatrist, and speech therapist. All of them told her that her baby is developing within the norm. A psychiatrist, after observing how Luchik put together a sorting toy he had learned to put together in early childhood, concluded: “A bright mind! He’s simply too young right now.”
Polina was terrified to observe how her son was losing the skills he’d mastered before and exhibited signs of developmental regression. The only word left from Luke’s former vocabulary was “mom,” but not directed at her. It was simply a scream at any aggravating situation. Eventually, the boy has failed to react at his own name.
His poor mother was gasping from panic and the absence of any information. She had no idea what to do next or who to ask for help. The situation was further complicated by the fact that it was 2020, that the COVID was in full swing and, with all the will in the world, it was close to impossible to get a consultation anywhere during that time.
What concerned Polina at that moment most was Luke’s inability to speak, despite being three years old. After getting in touch with an acquaintance from her first parish, a speech therapist and a priest’s wife, she got a recommendation to visit the Speech Therapy Center in Moscow. During an hour-long visit, a speech pathologist there offered Luke to play with toys, observed how he handles them, and checked his behavior. The conclusion was simply astonishing:
“You not only have speech delay, but your boy also lags in play activity. Moreover he has many more delays, so you better take him to see some specialists.”
Thus, a year and a half later, Polina learned that her worries weren’t in vain.
This was a rude awakening for poor Polina, because she was fervently hoping for the best until the last moment. It was literally like the ground was sinking under her feet, she was all shaking on her way back home and couldn’t stop crying, even for the sake of her beloved son.
Then life turned into one long ordeal. Unaware of all the information, three-year-old Luke’s parents went on to visit all those specialists recommended by the Center. But, instead of help, they were simply redirected from one specialist to another. Some really “cool” speech pathologist and blogger who authored several books, having received seven thousand rubles for a visit, told them: “It’s not autism.” And gave a list of tests that anyone can actually obtain on his webpage completely free of charge.
Those much-hyped specialists charge so much for their services that people even sell their flats and run into debts. And families often break up due to this; in some, a wife gets anxious as the money runs out, a husband takes on extra work and also gets anxious because he can never get enough to pay for it all. But others, on the contrary, fear the responsibility and challenges that suddenly befall their family. That’s how our heroine’s marriage broke up…
“Our first year was the toughest. I came close to the edge. I felt that one more moment and I’d go crazy or walk out of the window. I was howling at every doctor’s door. I also was mad at my husband, who had to turn the world around and find heaps of money to pay for those miracle-working doctors who were supposed to find the cure for our son.”
People want to believe in miracles and every time they nourish the hope that this next specialist wearing scrubs will help their child, and so they spend their last money on them. They are looking for a wizard doctor, but in reality—they end up being drawn into a system when specialists send them around one by one between each other. The most agonizing things for Polina were uncertainty and fear of the future. And also—the sense of guilt.
This rat race was over when the woman’s money ran out.
“It was horrible—it seemed that without money I wouldn’t be able to help my child.”
But when she ran out of money, Polina went to a local medical clinic and the neurologist sent them for a checkup at a free of charge hospital. A psycho-neurological hospital.
“The name was synonymous with an ‘insane asylum’ for me. I was afraid that they would administer some potent drugs and turn my child into a vegetable or nearly kill him, and all other kinds of stereotypes.”
Apparently she also had to walk this path.
At every stage of assessment and treatment, I had to solve many tasks. How to have tests? He needs electroencephalography—how is it done, if he’s still so young? Magnetic resonance tomography—but isn’t it under general anesthesia? But even taking him to the hospital, when anytime he might have fits—they used public transportation—was an ordeal. So, all of it turned into a real multi-staged quest for the mom.
“But, as odd as it sounds, it was in the hospital where I met other moms with children like mine and it made me feel better. Before, I felt so bad that I read nothing, watched nothing, and never joined any interest groups. And right there, in a general hospital room with only basic conveniences, my personal healing process began.”
When Polia and Luchik has taken all the tests, they were finally told about his diagnosis: “child autism.” Their next step was to complete the paperwork on disability and sign up to be followed up at a local medical organization. And if everything was more or less clear from the medical standpoint, learning would go a good deal worse. Their small town near Moscow didn’t have an instructor who could teach such kids, and as for Moscow, they had no idea where to apply. Besides, there was no possible way to bring him to Moscow on a regular basis.
They visited five speech therapists recommended by some friends and each of them would say: “Yes, he is educable, you definitely need to study, but I can’t take him.” Out of desperation, Polina took a study course for herself. She found online courses on special therapy for parents, but…
“It was absolutely not my kind of thing. It was all Greek to me and my brain put up a fight. It felt as if someone had me seated in a pilot’s seat on an airborne plane full of passengers and I was told: “Sit, you must pilot this plane.”
At the time, Luke was unteachable, didn’t respond to his own name, and didn’t play. At the same time, he loved flinging and throwing everything around, spilling water, sifting sand, and turning over the cabinets.
They would explain at those courses: “You are the parents and you feel your child, so you can help him far better than the specialists.” When Polina heard this, everything within rebelled against it: “I feel nothing! It wasn’t my choice to be in all this!” On top of this, she kept asking herself all the time: “Why me? How did I end up in such situation that bears so hard exactly on areas of my weaknesses, on what I don’t know how to do?”
It was always easy for her to study something new, she was a quick learner. And apart from her main profession, she learned photography and all sorts of handiwork without any problem. She was confident that she could handle practically everything on her own. But here, her own child was an unresolved puzzle and it struck right at her weakest point.
At the same time, despondency also hit her hard: why did God punish me? Why did it happen specifically with me? She went on to sift through the events of her previous life and to reconsider her sins. Polina found out later that this happens quite often and one should just live though this stage. Even if some blame it all on themselves, others, on the contrary, accuse God.
Polina found this out later, when she began to communicate with the outer world. And that’s where the unpleasant “discoveries” awaited her. Like these:
“Disabled children are given to the mother because of her excessive pride.”
“Instead of truly believing, she simply made passes at God.”
“It’s because of his parents’ sins, especially the mother’s.”
“Your child was conceived during a fast.”
It’s all like in the Gospel story: Who did sin, this man, or his parents (John 9:2).
Others, on the other hand, were singing praises: “This child is your ticket to Eden. He is already as if in heaven, and you are already saved, since you care for him.” At first, these remarks irked her, but then she got used to them and simply let it ride:
“I know a lot of families with disabled children, including priestly families, so all of them are very different and you really can’t treat them all alike.”
Over time, Polina understood that every person’s destiny is God’s mystery, and we may or may not find it all out one day. Gradually, her fear for the future of her child subsided. Before, she was afraid. What will happen to him in twenty years? Or when I die? As a result, she would become overwhelmed by feelings of helplessness, knowing nothing nor able to change anything.
But then, she came to realize that there is no point in even digging it all up, and she just has to solve the tasks she’s facing right now. Fear for the future dissipates once you realize that anything can happen with every child. It’s just that we all have this path imbedded in our minds: “kindergarten—school—college.” When this conventional path crumbles to dust, you become afraid, since you can’t see what lies ahead route and you don’t know where to go. But Polina realized that you don’t need to know the whole picture or to see hundred steps ahead. This is perhaps how trust in God reveals itself.
You take a step, run into a wall, and then it suddenly slides apart and you next step is revealed to you.
“A year ago, I couldn’t imagine that my child would attend a kindergarten group for kids with autism spectrum disorder, because where wasn’t one before and it was opened just as we began going there. We learned about it by chance and happened to be the first ones accepted in this program. We signed up to have equine therapy and have been going there for three years already. We also found a decent speech therapist within a walking distance, and that was akin to a miracle. This is how the Lord responds to our feebleness—with real help.”
“When problems began, I felt confused in my relationship with God, but anyone can feel this way, like as if you are a small child and your mother spanked you, but you have no clue what for. As a child, you don’t think of what you’ve done but rather that your mother no longer loves you. Likewise, I also doubted, not God, but whether He loves me or if He needs me. But then I met a good priest who became my spiritual father, and by trusting him, my trust in God was also gradually restored. When I finally felt light in heart, I could say with all my heart: “My Lord and my God.”
“I also saw that vocation isn’t about realizing of your talent, not what you love, or want, or what you have prepared yourself. Vocation is the situation which calls you to act, just like our situation—bringing up a special needs child is what the Lord has called us to.”
“Everything else, like concerts, performances, friends, creative work, opinions and recognition from people—all this had inspired me before. But I have lived through so much pain that right now my center of gravity has shifted. I often encounter grief and meet families that exist as if under zero gravity. We regularly have drones flying above our heads,[2] so I have long been seeing life from a different angle. As if I have fought my own personal war. So for me, only God and people make sense.”
“I can already say with all sincerity: “Glory to God for all things!” I love Him more than before. I want to be a devout believer, because He is the best I have ever encountered. I also try to frequently bring my son to Communion, explain the foundations of faith to him, so that it will also be an important part of his life; because it is our pillar of strength. Besides, I am grateful beyond measure to those people who came into my life during these years and also to those who didn’t drop out of it at my darkest hour of grieving, when I was difficult to deal with.
