Catchers in the rye

VARYA

The teachers and tutors have many nicknames for Varvara – or Varya – including “Baby Bear” and “Varenik”, which means “Dumpling” in Russian. Varya has CP, an organic disorder of the brain and the central nervous system. When she was born, the doctors’ verdict was unanimous – Varya will never learn anything or be able to take care of herself. The medical system suggested that the mother give up her daughter to the state, as it always did in such situations. Varya’s mother Masha, however, decided otherwise, and took Varvara home from the hospital. Of course, she believed in herself and in her little girl. She is a single mother, and she calls Varya “the girl who fell from the sky”. From the very first day, Masha has been working hard, doing all kinds of activities and exercises with Varya. She teaches her every little thing, and brings her to clinics for expensive rehabilitative treatments. 

When in 2014 we first opened the preschool group of our project, Masha and Varya were the first on our list of prospective students. Masha travels across half the town on public transportation to bring Varya to the preschool. They live in one of the residential neighborhoods on the outskirts of Moscow, in a tiny apartment. But there is nothing Masha can’t do when it comes to her Varenik. 

When Varya first started attending our preschool, she could walk, she responded when her name was called, and she was able to carry out a simple command with support. She wasn’t able to talk – she just made very loud noises that resembled the growling of a baby bear. Varya was a large three-year-old and grew fast, which makes motor abilitation more complicated for children with similar disorders. Everyone immediately started calling Varya “our baby bear” – for her voice, for her wobbly gait, for being so tall, and for how insistent she was in achieving her goals. 

When Varya first joined our project, we developed individual programs to teach her the basic self-care skills and to introduce alternative communication methods. We also created behavioral protocols for socialization, along with physical therapy and speech therapy programs. 

After three years in our project, Varvara has learned to respond well to her name, to follow verbal instructions for activities at the desk, to use a fork and spoon, to drink from a cup, and to ride a scooter. It took two years to teach her to use the PECS, a form of augmentative and alternative communication. Varya has bad sight, and at first, it was very hard for her to distinguish the images on PECS cards. Our experts had to try a few different strategies and approaches to teach her to tell the cards from each other and to connect the images on them with real objects. Today, Varya is able to go very far – even distances that are very significant for her – to tell an adult what she wants and to ask for help. A speech therapist taught Varya to rhythmically sing out vowels, to pronounce many different syllables, and, most importantly, to say the word “Mom”. 

In another year, Varvara will start first grade together with “regular” kids. There is a long school journey ahead of her, and she will definitely learn many new, useful skills. We do not doubt that. 

There are 4 girls in our project. Statistically, boys end up on the autism spectrum 4 times more often than girls do. Our project, too, has 17 boys and 4 girls. 

One of the girls is Eva. She is a delicate, graceful girl with blond hair. Eva has a very beautiful mother and a musician father. Both parents are willing to do whatever it takes for their girl, and provide home support for all activities and recommendations that our project specialists give them. 

Eva is living with a rather severe form of autism. She came to our project three years ago. At the age of three and a half. Back then, she rarely smiled, she wasn’t verbal, she couldn’t use the bathroom or feed herself, and it was almost impossible to interest her in any joint activity. Eva had prevalently field behavior – which means seeing the goal and not seeing the obstacles, and she also had some self-destructive behavior – auto-aggression. Testing revealed total communication and social deficit. Eva spent most of her day auto-stimulating. 

As a participant of our project, Eva was given a personal tutor. We developed a program of behavior correction and self-care skill training for her, introduced a method of alternative communication, scheduled speech therapy sessions, designed an individual adaptive physical therapy program, and put together a long-term program for overcoming social deficits – that is, we created a route for Eva’s step-by-step inclusion into a mainstream preschool class. 

This year, Eva is set to start first grade in school. In the three years, she has learned to use the bathroom and to feed herself; she is making great progress in speech therapy sessions and is now able to spend time on a playground with other children. Eva uses the PECS system for communication, and attends mainstream art classes, clay sculpting, cutting and pasting, and drawing with the rest of the children. She has many one-on-one classes. She has learned to sit and do something at a desk, and to follow an adult’s instructions. The self-destructive behavior is now a very rare occurrence, and some of the behavior problems have been eliminated. Eva laughs, looks people in the eye, and can ask an adult form something she needs. She has learned to wait. Every day, she makes us happy and proud, and every day is a small victory for her.  

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