Meeting Ivan
Ivan, or Vanya (as Anastasia tenderly calls him) was born in 2012 in an industrial city of Russia. His local medical doctors gave him a diagnosis of cerebral palsy (CP) specified as "hyperkinetic syndrome", "spastic tetraparesis" and a host of other conditions.
In practice, Ivan doesn't use oral speech and has rather limited control over his arms and body. He doesn't move around by himself and relies on a wheelchair and a home attendant, which since his birth has always been his mother, to move inside the apartment. Most of the time, Ivan's body is immersed in a sort of a dance (or "alternative moving", in words of Anton Ryanov, a Russian philologist with CP) because of hyperkineses (in Russian medical terms), or dyskinesia (in CDS terms), i.e. involuntary movements of hands, arms, feet, and legs. This dance is dynamic, since Ivan's muscle tone can vary from too tight to too low during the day (a lot of times it's actually low, as his mother attests), depending on weather conditions, anxiety, and overall health condition. For example, Ivan can have a hard time controlling his movements which become really intense and jerky when he is cold, excited or anxious. Other times, when he gets absorbed into an activity, like watching a video, his body can become really soft and quiet.
Some might call Ivan “a competent speaker who can’t speak” (or sign, for that matter), because in order to communicate, he uses other available resources – his head, torso, eyes, and face movements, his chair, computer, eyetracker, water bottle, window, and even his mother’s fingers! Since Ivan started using eyetracker and went to school, he also has been incorporating emojis, Russian and English letters, words and phrases into his communication repertoire. Still, as some other people with CP who don't use oral language since birth, Ivan has dislexia, and whenever possible Ivan resorts to visual language, based on homesigns, emo
This doesn’t mean that Ivan’s language is any way lesser, or he himself is less competent or less intelligent – a widespread stereotype about people who communicate in non-traditional ways!! Back in his country, Russia, Ivan and many many other non-speaking people with developmental disabilities are often treated as “not making sense” and being “mentally retarded,” in the words of local disability evaluation commissions. This website aims to resist these stereotypes and show ingenuity and complexity with which Ivan interacts daily with his mother and school teacher.
Ivan, a boy with open, smiling, and playful face is looking at the camera; he is sitting in a chair dressed in a white t-shirt with what seems like a child's drawing of a wolf and full moon. Behind him, there is a on open laptop gleaming with light and rows of school-related rules and a poster of Solar system hanging on the wall.
Meeting Anastasia
Anastasia stands behind a lot of Ivan's successes. She is an educator, a specialist in alternative communication, a caretaker and a loving mother of Ivan. Whenever possible, she is willing to sit, watch, listen, and skillfully co-construct his communication. She has no doubt that Ivan knows what he wants to say and makes space and time to support his actions. Her belief in and respect for what Ivan's got to offer to this world are crucial for helping him to be what he is - a valid and competent communicator.
Despite its over 1 million population, the city where Ivan and Anastasia live has scarce resources when it comes to supporting people with disabilities, including children. As anywhere else in Russia, the government does not provide paid personal assistants (besides a small disabled care benefit for the caregiver), nor is there Direct Funding program for people with disabilities to hire and manage their own personal assistants. Therefore, Anastasia has always been Ivan’s main caregiver, nourishing him with love, creating the physical environment they both inhabit, learning how to attend to his medical, eating, communication and education needs, as they grew and changed over time.
Anastasia, a tall woman with long dark hair and a fringe is sitting at a wooden desk, a stack of books is supporting one of her hands that props up her head. Anastasia is looking at a camera smiling. She wears a gorgeous long blue sparkling dress with one long and one short sleeve showing her hand.
Since Ivan started to use an eyetracker in 2020, Anastasia has done extensive research of web-platforms that are compatible and work well with this device, because not all educational platforms or video-games support gaze control, so one always needs to check before adopting a resource in one’s school curriculum. With time Anastasia has become one of the best, if not the best, specialist in Russia in non-commercial (free) or financially accessible educational resources compatible with an eyetracker. Throughout these years, she has answered numerous phone calls and messages in social media from families who have children with communication disabilities who use or want to start using eyetracker and are short of information. She is also a co-author of the first manual in Russian on "Eyetracker in teaching children with severe motor disorders" (2024).
This is a cover of a textbook devoted to the use of eyetracker in the teaching of children with severe mobility restrictions in Russian. Anastasia Smirnova, Ivan's mother, is one of the authors of this book, together with Olga Bogdanova, Aleksandra Anurova, and Ivan Bakaidov. The cover is dark blue with white letters. Below the book’s name, there is a drawing of a boy and an open laptop with Russian alphabet, a red arrow leads from his eyes to the alphabet letter; attached to the laptop is an eyetracker.
It takes two to make a language
While many people think that it takes a society to invent a language, this family shows that a society may well be made of just two people! Throughout their lifetime together, Anastasia and Ivan have worked out efficient ways to understand each other and do things together. These ways include Ivan’s gestures (homesigns), his mother’s questions, and use of space and objects in their apartment.
While the term homesign (or home sign) was originally used as a sign in American Sign Language to discuss how deaf children communicate with hearing parents, here we'll use it to talk about gestures of Ivan, a hearing non-speaking boy with cerebral palsy, and his orally speaking mother. Many other people with communication disabilities and their families around the world develop similar strategies to communicate with each other! Family signs of Anastasia and Ivan is just one example, and a really complex one, in the ocean of language creativity that such families shine to the world.
That said, Ivan's language is not something that is only shared between him and his mother. This website will show video-snippets of his conversations with both his mother, his school teacher, and the author of these lines. Anyone, really, can learn it if they have a chance and the will to hang out with Ivan and his mother long enough to learn from them !