Saturday, 28 April 2018 15:00

Maria Popova: The World beyond the Line of Vision

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Dear Readers, we’ll introduce you to a very, very brave boy named Georgi Skordev. He lives in a world we know little to practically nothing about. Georgi was so eager to come into our world that he was born prematurely to his loving parents who had been excitedly expecting him. This caused him to lose his sight and hearing. He is both deaf and blind, but a very sensitive child. He’s a 10-year-old guy from a seaside city who has a lot to tell us. However, his stories have so far remained untold because his means of communication are still unknown to us and we can barely come to a reaching point. That’s why, his mother is speaking out for him.

I’ve known Maria Popova (or Maya, as the people close to her know her) for ages. But we’ve only managed to meet up in person along with Goshko at the International Conference ‘See the Silence, Hear the darkness’ held in Plovdiv last year. She was there to share her experience as a parent of a deafblind child. Unfortunately, we barely had the time to speak about all the matters that concern us. This is why I’m expressing my sincere gratitude on her willingness to speak out through We Hear You.

Hello, Maya! Could you tell us about Goshko, his appearance into the world and the things we should know about him? We would like to introduce him to our readers, especially the ones who’ve never heard about him so far. What are his needs? How did he spend the holidays? Is there anything surprising happening in 2018 so far?

My boy came into the world out of the blue in extreme circumstances. I had an easy pregnancy, which is why we didn’t expect this to happen. Something went really wrong in a few days, we don’t really know what happened. I’ve told the detailed story about his delivery in an article entitled “Baby number 576” on Goshko’s website. I started his site  when he was little. To cut the long story short, he was born at 24 weeks, nearly 4 months before his due date in the Maternity Hospital in Sofia. The doctors were not bound to resuscitate him, but they did this. He had to live up to one week of age to be registered as a baby. Up until then, he was entitled ‘baby number 576’.

When he was discharged from the Maternity Hospital, we found out he had developed retinopathy of prematurity stage 5, meaning the retina in both his eyes was completely detached. This makes the return of normal eyesight impossible. The only thing that could be done to restore his perception of light and silhouettes is the performing of a specialized vitreoretinal surgery. This would allow him to have a better spatial orientation. This type of specialized eye surgery is pretty risky and is not done in Bulgaria. Throughout the first year of his life, Georgi had had 4 eye surgeries in The Gemelli University Hospital (Policlinico Universitario Agostino Gemelli), in Rome.

Shortly before his second birthday, we found out he’s also lost his hearing. Meanwhile, we had established close relations with the specialists from the Italian hospital. They helped us as we were getting his early intervention started. We had a total of 13 journeys to Rome because his condition needed evaluation and monitoring. We’ve been through 2 intensive courses of therapeutic sessions, each lasting one month. This happened when he was 3 and 4 years old respectively.

We’ve witnessed the supportive sessions that the Italians provide for children with his condition and we’ve seen their progress with our eyes. We know his potential is still locked up inside him but we’re trying hard to help him rise up to his full potential. This is not at all an easy job in Bulgaria. Despite the obvious limitations, many people support us and we’re moving forward.

What Georgi needs the most is communication with people. This is by far the hardest thing to do for him. We try to ensure he gets new experiences and sensations on holidays. Every year, on his birthday during the summer, we throw a garden party. We invite many guests and have live music played. We started this tradition on his first birthday because we have to make room for the joy in our lives.

So, our steady progress has gotten us to the point of an educational event being organized in Burgas. It’s entitled Alternative methods of communication with deafblind people and is hosted by the National Association of the Deafblind in Bulgaria (NADbBg) in co-operation with the municipality of Burgas.

The specialists from NADbBg, Anna Roydeva and Deyan Slavov, will be hosting the practical education. There will also be an information campaign on the event. I hope this will aid the change of public opinion, which currently states that it’s   not possible to communicate with deafblind people like Georgi.

On our meeting during the conference in Plovdiv, I noticed Goshko is using a range of signs which are known as mudras or hand yoga practices taken from Hinduism and Buddhism. There are a large number of gestures, each of which has a definite purpose i.e. treatment, meditation, relaxation, overcoming various ailments. Not many people know about mudras and few of them use hand yoga consciously on a daily basis. Yet, Goshko seems to have come to us to raise awareness of their healing power and the role they play in communication. What do the finger positions he uses tell us about him?

The combinations and figures of finger positions can carry an infinite number of meanings. I don’t know of any person so far who’s able to recognize and translate the whole lot of them. I’ve noticed Georgi often holds the fingers  of both his hands in the same position as if they’re in sync. There’s no way he could have seen the positions, but he’s making them himself. He’s experimenting with the energies flowing through his body and has discovered all by himself the proper finger positions to help him concentrate, overcome stress, anxiety, panic, fear and ease a possible physical discomfort he can’t tell us about.

I wish I knew everything about mudras, so that I could get feedback on his condition at certain moments. I would even know about possible health issues he’s facing. This is how mudras become means of communication. He frequently does the lotus pose with his hands practicing the apana mudra of energy (i.e connecting the thumbs, middle fingers and ring fingers simultaneously). This mudra can ensure patience, peace, confidence, a chance for introspection, observation, inner harmony. It helps you be grateful for your being as well as appreciate everything life’s giving you…

He might be deafblind, but Goshko can sense the energies directed towards him and would react accordingly. Are there any other means of communication he’s using? How do you communicate with him?

You’re absolutely right about the energies. I’d say he’s so accomplished in the field not despite his lack of the two remote senses, but because of it. Vision is the last sense to have emerged throughout evolution, it’s the sense we rely on to get most of the information on the world around us from a distance. But it’s also the sense that’s most prone to distraction and illusions. You know, what’s essential is invisible to the eye. As Steven Levine says:

The human body could become  a pretty sensitive diagnostic instrument; it could give us signals on what’s happening inside of us; it’s even able to mirror other people’s experiences we’ve picked up on an emotional level through sensing their mental states… We’re learning to  read ourselves through sensing and carefully looking into the way we are reacting to the things that we encounter on our way. We’re investigating the vague messages our bodies are giving us, we can sense when we’re drifting away from harmony and when we’re moving in the right direction. Here’s one good example: imagine the feeling and sensation you get when a friendly conversation suddenly starts to turn into a slander or a talk behind the back of the people involved; the stomach is slightly upset, the chest is feeling some pressure, there’s some bad feeling and even slight confusion. We could get a clear picture of what’s going on with the world, we could be more honest and straightforward if we would just notice the way our  bodies are reacting, when they’re hunching or raising up, when they’re being tense or relaxed over the course of various activities…”. 

Body language is truly speaking out. Over the years, I’ve learned to read Georgi’s body language and he’s probably learned to sense my mental states as well as the ones of other people.  That’s why, if I could use Exupery’s words, I’d say my son gets the essentials and he can hardly be deceived. Unfortunately, this way of communication is only limited to the present time. It’s hard to leave a message for him if we need to refer to the past or the future.

Is it possible for Goshko to learn sign language or any other form of conventional communication when he’s here to show us brand different ways of communication?

I think it’s still possible but he needs to be in regular contact with people who use the same sign language.  Learning a language is a result of the need to communicate with the others around you. It will also be a possibility if he has a person to stay by his side constantly and be a mediator between him and the people around him in communication situations, to translate their messages into signs that are known to be meaningful to him. Let’s wish this scenario will be a reality and one day it might as well happen for real. 

Let it be! Do you think haptic communication as demonstrated by the Norwegian specialists will work for Goshko? Could it be a way of communication between him and the others around him? Do you practice any of the methods you witnessed at the Conference at home?

No doubt, haptic communication could be useful! It’s also a very good way to develop spatial orientation. But I haven’t used haptic communication at home since he’s already familiar with the surroundings. Ah, now I recall I make some sort of haptic signals to denote the different notes on different parts of his back according to their pitch when I’m singing notes to him. I’m not a musician but I had to recollect the notes so that I could play children’s songs to him on our metallophone. I sometimes imagine his back is a metallophone and I ‘play’ the tone I’m singing with the low-pitched tones played on his lower back and the high-pitched tones played on his neck.

At the end of last year, bTV channel’s reporter Kristina Gazieva made a movie about Goshko entitled ‘Not Without My Son’. What’s changed from then on?

Kristina Gazieva’s movie served as a bridge between Georgi and many new people we’ve met. We happened to meet perfect strangers on the streets who recognized him as the main character of the movie and wished him all the best. We came across a man dressed as a chimney sweeper. I put a coin in his hat and Gosho put his hand inside to see what’s in there. The man was startled and thought the child wanted to claim his money. I explained to him that’s Goshko’s way of exploring his surroundings. The man suddenly recalled the movie and started blessing us from the bottom of his heart. That was certainly not a scenario. It was very funny.

A few more mothers of deafblind children from other cities around the country reached me on Facebook. They face the same difficulties as us but they’re doing their best to ensure their children are making the desired progress. The most significant event of all is the National Association of the Deafblind in Bulgaria has decided to fund an educational event on alternative ways of communication (the ones we’ve mentioned above). The municipality of Burgas is eager to host the event and it supported us in the process of its organization. 

What a wonderful news!  Love and the right treatment could serve as the basis of proper development. This is still valid in the case of children with special needs. Any attempt to communicate is indeed an opportunity to exchange experience and learn from each other. What did you learn from Goshko? What’s the thing you’ve been through that’s had the most impact on you?

It’s been a long way we’ve been walking from the Maternity Hospital til the current day. Our beliefs have significantly changed over time. I clearly remember one thing about our first hospitalization at Policlinico Gemelli. We’d been admitted to the Pediatric Ward as opposed to our expectations we would be patients at the Ophthalmic Ward. They did this because the pediatricians needed to monitor the child’s condition. The Pediatric Ward was full of mothers seeking medical help because their children didn’t seem to eat well. All of them were stressed out for some reason. The doctors were simply telling them that children react to their mothers’ level of stress. They would show them how to breastfeed in a more comfortable position and how to address the babies. They encouraged the presence of all members of the extended family.

The Ward was full of strangers and you could see merry people all around and hear some loud noises. The staff never made any remarks, but they would constantly go around the Ward to clean up the place. I was really impressed for there was no medical condition (as we would label it in Bulgaria) in the cases of these babies. On the other hand, this is how feeding disorders start and Italians were working to prevent them. Italians treated children like human beings with feelings and comprehension of their own from their very first day.

The mothers needed to change their whole attitude for their babies to stop rejecting food. Goshko has taught me in a similar way to make room for myself inside my heart, get rid of self blame, tension, fear and anxiety and fill my heart with loving goodness. 

How do you know what he needs? How do you ‘read’ his reactions? What are your observations on Goshko’s character and temperament?

Georgi is open to the world around him and he’s very sociable. He’s particularly interested in people and pays little attention to plants and animals. Despite the difficulties he faces every moment of his everyday life, he has an overall friendly attitude and is usually smiley. Have in mind he gets tired easily and could go into a meltdown in an instant. I try to notice any behaviours predicting the likelihood of such an event occurring.

When I want to know what’s bothering him, I start listing possible reasons in simple words and observe his behavior to my guesses. When I come across the real reason, he makes a sign by changing his behavior usually calming down or saying something like a Yes with his voice. I got the courage to speak to him regardless of his hearing impairment when I read the works of Francois Dolto -  French psychoanalyst pioneer who advised people to talk to their babies from the moment they were put in incubators.

What is his real capacity to deal with things? How is he similar to other children (having in mind conventional ways might work for them but definitely won’t help him)?

Disability is perceived as abnormal only when it’s put into a specific social context. As Vygotsky says, ‘a child whose development is handicapped by some sort of disability, is not a less developed child in comparison to their peers, but is a child developing in an unconventional manner’. Vygotsky’s novel idea states that the loss or underdevelopment of a certain innate function is best compensated by the development of a higher mental function. His theories were inspired by special education theory and his compatriots’ practical experience with a group of deafblind children in Kharkiv (Sokolyansky and Meshteryakov).

According to him ‘you could teach a blind person to sharpen their hearing to a certain extent; developing the brain’s capacity to compensate the loss of vision, on the other hand, is practically limitless (you could use imagination, reasoning, memory and other processes). He’s convinced that when Medical science and Biology come to the point of beating blindness and hearing loss, those conditions will have been overcome by socialization and education. Mentality, specifically speaking of reasoning, is a function of socialization.

The stages and milestones of development are all and the same for both normal and mentally retarded children. Hence, Georgi’s capacity to deal with events is practically unlimited. Intellectual disability, as the concept is labeled in our vocabulary, is not something you were born with. It’s rather a process where mental functions arise and develop in alternative ways.

Are there any other surgical procedures he will have to restore his eyesight and hearing? What can we do to help Goshko’s education and cognitive development?

We’ve already given up the idea of medical treatment of Georgi’s condition since it doesn’t seem possible. He needs to have his eyesight and hearing assessed again. Unfortunately, this can’t be done in Bulgaria. So far, we’ve set our sights on gathering more people around Georgi who are eager to teach him and take part in his education. You know this is not a job a  single person or two can do.

What kind of specialists does he need to work with? Does any professional work with him at the moment? After all, we don’t mean to teach him what he’s expected to know at his age, but we are supposed to take into account what works for him and get to know his world…

My Christmas Wish every year is that one day Georgi will have a personal intervener and we’ll witness a sensible leap in his development. So far, I’ve been his interpreter but I’m also his mother. This makes the essential separation of a child from their mother and the resulting emergence of a sense of self and independence impossible since we’re constantly connected to each other. As far as professional work with deafblind children is concerned, there are no specialized syllabi for children with sensory impairment of this kind. There are, however, specialized educational approaches.

For example, Dr. Jan van Dijk’s world renown methods that have been practiced for over 50 years to educate deafblind children. But you should take into account the fact that the combination of visual and auditory impairment, especially when paired with additional conditions, is unique for every person affected and should not be compared to other people. Teachers are supposed to get creative, so that their approach to every deafblind child is individual. 

This is how Anne Sullivan, who’s not even a teacher, managed to make a breakthrough in communication with seven-year old Hellen Keller back in 1887. She gave the best of her imagination and intellect over the course of 49 years to be her governess, teacher, friend and mediator between Hellen and the world. This natural way of communication has been the basis of the modern-time mediation approach used in the intervention of deafblindness.

In the USA and Canada, the mediator between a deafblind person and the world is called an intervener and is a certified professional who has obtained a Bachelor’s degree in the field. These countries pay for the education and service of the interveners. So far, there’s been a lack of education to prepare professional interveners in Bulgaria. The only support deafblind people get comes from their loved ones and members of their families. In 2012, the NADbBg won a grant to fund the basic education of five professional interpreters to serve deafblind adults.

Up until today, the matters of early intervention for the deafblind children in Bulgaria and the need for qualified interveners who’ll work with them one-on-one, have not been discussed. We hope the subject will be addressed during the basic education entitled ‘Alternative Ways of Communication with Deafblind People’.

Are there things (or objects) that Goshko particularly likes?

He’s definitely attracted to sand, the sea, water, inflatable balls, balloons and ball pits, as well as musical instruments. Actually, he doesn’t like the objects as much as he likes the activities associated with them. He loves playing in the sand, squeezing clay and splashing water, listening to music, jumping on a trampoline and using percussion instruments to make sounds.

You know I’ve asked you before but do you have any pets? Have you introduced Georgi to animals? What’s his reaction to them?

You’ve asked me a pretty interesting question! We have a very intelligent kitty who lives in our yard and lets Georgi play with him. It’s a stressful event for the kitten as Georgi hasn’t mastered his grip control yet. There comes a time when the kitty lets him know that it’s had more play than it can take and it manages to get away from his hands.

The animal never happened to scratch him. This helps my son get an idea of the limits of the tolerance the others around him have for his behavior. Georgi has only recently shown any interest in plants stopping by flowers and bushes reaching out his hand to pick them up. This reminds me of Francoise Dolto’s words:

‘… looks like the connection to vegetation is giving the human being a chance to restore their vegetative functions, their respiratory and digestive wellbeing. You know how we tell people who are exhausted or nervous that they need to visit a place where they will be around green plants… When a child can’t seem to like flowers, plants and trees, they lose their appetite.’

This is especially true for Georgi. He often has a lack of appetite. What seems to be the solution to this problem is we spend more time outdoors in the nature.

Thank you, Maya! You’re right, nothing compares to the time you spend in the Nature as it fills us with energy in a specific way. After all, we’re a part of Nature and Nature is a part of us. It’s through this touch between both sides that the most marvelous renewal is taking place.

A boy living by the seaside with no hearing and vision to rely on is like a lighthouse shining a bright light onto the unlimited capacity of our senses to work beyond the line of the physical world.  I believe we’ll soon get the exclusive chance to get feedback from Goshko and other children like him. This is how we’ll gain access to a world that’s brand new, different from the one we’re used to, and filled with unknown beauties. In May, we’ll meet the magical people who’ll help us build the bridge towards this new world. The basic education entitled ‘Alternative Ways of Communication with Deafblind People’ will be held from 8th of May to 17th of May in Georgi Baev Gallery and Expocenter ‘Flora’.

Photos are taken in Plovdiv in 2017 and could be found in the gallery of the Site

Article and photos by Christina Tchoparova

EN Translation by: Maria Mihailova

Alliance NCAC “We Hear You” is the holder of publishing rights on this article


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