Download our winter newsletter to find out how our Alternative Technology programme helps find different ways to communicate for young disabled people who cannot speak, how we hosted Father Lev and his helpers from the Kondopoga Parish in the UK and about their plans after their return to Karelia, how Sunflower helps Russian orphans to be independent, and how our legal programme run by Mkurnali helps save young people from prison.
We all take being able to communicate for granted, but just imagine if, aged just 15, you had had to face spending the rest of your life virtually house-bound and unable to communicate with anyone. This is the future for many disabled people like Gleb in Russia today without our help. This is why we are launching our Christmas appeal to bring them the chance to communicate.
Our Alternative Technology programme is about finding different ways to communicate for disabled young people who can’t speak and may never speak. It is about opening up the world and giving them the possibility of making friends. And it works!
Gleb is 19 and an only child. He does not speak because of a rare genetic syndrome, which affected his development from the first months of his life. He needs to be accompanied and helped in his daily life. Gleb is a sociable and determined young man and he is happiest when he is busy. But he can only communicate by a gesture or a sound so communication is critical for his development, making new friends and exploring the outside world. Unfortunately there are simply no other facilities in Moscow which can offer disabled young people a chance to be active in the community and give them a different perspective on life.
Zhanna is totally focussed on helping and encouraging her son. Since he was 10, Gleb has been attending sessions at “Communication Space”, our partner charity in Moscow. Since the start of our Alternative Technology programme last year Gleb also began using special books and software which help even more to express himself through signs, symbols and gestures and he is making big progress.
Zhanna says: Alternative communication is the most important aspect of Gleb’s and my lives today. Last week Gleb managed to explain with his communicative book that he played compunter games with someone who wasn’t familiar with alternative communication. That’s great and this means it works! So all my efforts are not in vain. And of course the specialists’ efforts – we could not do it without them.”
Find out more about how our partners help Gleb and others like him in this short video.
Since 1991 St Gregory’s Foundation has worked with the exceptionally active parish in Kondopoga to serve their poor community. During that time Russia and Kondopoga have changed greatly, but the parish continues to meet the challenges in its path. Tamara Dragadze, one of our directors, reflects on what supporting Kondopoga has meant to her personally.
Many years ago, St Gregory’s Foundation provided funding for the parish in Kondopoga to have on its land a small sawmill and a woodwork workshop (which made furniture and used the saw wood profitably too) and all that went with it. Unfortunately in time these stopped being commercially viable and they closed. We at St Gregory’s accepted that things like that happened…
However, many years later a devoted member of their parish appeared from nowhere and decided to revive it as a centre for teaching woodwork to Continue reading Nothing is lost in Kondopoga parish
Liza’s multiple disabilities have made life more challenging for her and her family. She has cerebral palsy and poor sight. When our colleagues first met Liza she couldn’t sit or stand unaided, or use her left hand. She could only play with the simplest toys, like a rattle, and, being unable to talk or express herself, she easily got frustrated and angry.
As part of our Alternative Technology project for disabled children, Liza and her family have had regular sessions with a physiotherapist and a speech and language therapist. These have helped her learn to communicate, play and become more independent. Continue reading 5-year-old Liza learns to play
Our partners at Sunflower in St Petersburg are training mothers who grew up in orphanages to support and mentors younger mothers in the same situation. Sunflower helped Galina when her children were young. Now she is helping Natalia care for her baby son. Continue reading Mothers who grew up in orphanages mentor others
Summer newsletter 17 Download our newsletter to find out how Sunflower is preparing parents who grew up in orphanages for their summer camp, how our physiotherapist colleagues are turning distrustful parents into allies in their children’s care, and how we’ve helped formerly homeless young men to overcome disappointment and depression.
Julia Ashmore has recently returned from a visit to St Petersburg to meet our partners. While she was there, she introduced a group of 30 trainee teachers from Leiden in the Netherlands to our colleagues and pupils at Dinamika School for disabled children. They had found out about Dinamika through our website and wanted to find out what education was available to disabled children in Russia. They were positively surprised by what they found. They were particularly impressed by the equipment that teachers at the school had made or adapted themselves to meet the needs of the children, and by the facilities that St Gregory’s had a hand in providing: the model flat for teaching domestic skills, the craft workshop and the well-equipped gym. This was an excellent opportunity to introduce our work to a broader circle of young people and raise our profile and share our plans.
This New Year was indeed very happy for Mkurnali, because the Ministry of Penal Correction services of Georgia has released and sent to us a lovely girl. A year and a half ago she was arrested in Batumi and her sentence would have been 6-7 years’ imprisonment had we not intervened. However, we managed to reduce it to 3 years, even better, as a celebration of New Year and with the intervention of the Georgian Patriarchate we have managed to get her pardoned and released.
During her health check, we found that she had Hepatitis C. The prison administration had provided Lana with a free programme that will aid her recovery. However, after she was released, her free medical care came under question. Again, with our intervention and the prison administration’s help, we managed to continue this treatment for Lana. One week ago, during a routine health check, she got some great news: she has been completely cured of the disease! However, the treatment has to go on until the end of the course. I am deliberately not telling the story of what led Lana’s life to drug abuse and to the prison sentence as it is a very tragic story; however, I will tell you that she had given a birth to a child who had hydrocephalus and died within a year.
We have always supported Lana when she asked for help and we tried to get her to join us, but because of her bad habits, she didn’t want to live in Mkurnali. Luckily prison has changed her completely, she has made drug abuse a thing of the past. She came to us and wants to start a new life. In her time in prison, Lana has learned embroidery and we are trying to support her so she can use her embroidery skills to support herself. We would like to raise money and pay her as an instructor so she could teach other girls to embroider, as well as buy her own equipment so she can make items she could sell.
One more proud and happy new thing that happened this New Year: as you know, every New Year we invite our current and past beneficiaries to a party. On 30th December, due to extremely low temperatures our central heating broke down. However, we still managed to have a good time and used our open fireplace to keep warm. We couldn’t fix the heating as every maintenance provider refused to work during holiday time and as we found out, the cost of the repair is very high. One of our guests and a past beneficiary, Kote, who found out about the problem, came the next day with his co-worker and fixed the heating free of charge, which made us happy and was also an amazing example for the other kids. Kote had been in Mkurnali’s care for years and had lived 2 years with us in our shelter. 3 years ago, we helped him to start work in one of the building companies where he currently works and with his honest effort is able to support himself, and now – us too.
Thanks to your continued support to Mkurnali we are able to help more troubled young people like Lana, Kote and others like them, who without your help, would face a bleak future.
Last year, the programme’s participants often turned to the group for help in finding work, and for support in finding the sort of work that they would find interesting. They do not know how to adapt the training they had in college to real life and the majority did not complete their education. Reaching the point when they had to live independently, they stop feeling part of a society in which they are used to living. They begin to study themselves afresh, recognising their preferences and listening to their desires. Their greatest difficulty is in how they present themselves – their internal conception of themselves does not bear any resemblance to their actual appearance. That relates to how they feel about themselves and how they appear on the outside. This disconnect becomes apparent in conversation with the participants:
“I seem to be really thin because I wasn’t allowed to eat at the children’s home, they just didn’t give me anything to eat” (Taras, 22 years old, is of normal weight and does not look thin).
“I got my hair done in this fashionable way and now I look sporty” (Tanya, 26 years old, does not look after her hair and looks unkempt and dishevelled).
“I could do with losing weight, I’m so fat, I’ve probably got 25 kilograms spare” (Kirill, 23 years old, is a tall and strong boy who looks big but does not have excessive weight for his height).
The issue is that in the family a teenager openly receives information about himself, his opportunities and about changes both internal and external. He sees change in photographs, clothes and the physiological changes in his parents and his grandparents. His relatives can answer his questions about the changes in puberty, they can care for him when he’s ill and teach him to speak about his feelings. In orphanages and similar institutions, teenagers are deprived of such focussed and sensitive attention. It’s only when alone with themselves, after leaving the orphanage, that they begin to observe the development of their personality, feelings, emotions and sensations. They also begin to find the connection linking their blood family with their physiological peculiarities. In observing and answering this demand we put before our young people a complex exercise, directed at the study of their body, feelings and health.
In the context of an exercise about the construction of the body, we organised a visit to an exhibition entitled “The Human Body”, where there were real-life displays of, for example, skeletons and organs. Our youg people asked questions of the expert guide about the problems caused by addiction – they were interested in the various illnesses and the details of how the organs worked. “Can you show us how the heart looks after a stroke? My mum died from that, I want to understand what happened” (Kirill, 22 years old). “Are those the lungs of a smoker? If I smoke will my lungs be like that too?” (Lidia, 14 years old). “If I had a birth defect and my skull was deformed, would my brain be deformed too, or would it be like other people’s?” (Sergei, 23 years old).
Many of them could overcome their fears and dispel myths. Some started developing new habits. “I’m going to have breakfast every day now that I’ve seen this stomach ulcer – I don’t want mine to get any worse” (Tanya, 26 years old). Some of the teenagers started paying more attention to their personal hygiene, and others to the size of their clothes. Working with this theme – without penetrating into the personal stories of any of our young people – allowed them to experience the boundaries of their bodies and to study their personal boundaries. This will support them in forming an image of themselves.
“For two years I have been taking my daughter, Liza, to the Sunflower centre and in the summer we spend a week at camp with other families. This gives me the strength to carry on and gives me hope that my and my daughter’s lives will work out”.
All of our families come to us with difficult stories, so it it wonderful when we are able to light a path for them through to brighter times. If Liza’s grandmother had had the help her mother’s found with us, a whole world of suffering could have been prevented. We’re just glad that, thanks to you, we can be here for the family now and have been able to break the cycle of misery. Continue reading Sunflower did the impossible – they saved my daughter for me