Natalya’s youngest son Zhenya will soon be six. He is a child with a difference. He has Down’s syndrome, a genetic condition caused by the presence of an extra chromosome in the body’s cells. When a child is born with it, all the doctors say is: ‘Bad luck!’
But Natalya knows that her family, which lives in the village of Beryozovka near Omsk, is lucky: Zhenya is a bright young boy – affectionate, kind and gentle. He is a whole world in one small boy. He sings and dances all over the house, giving no one any peace and dragging them into his games. Zhenya draws colourful pictures full of light and gives them to his family.
Zhenya is interested in everything, from the sun suddenly hiding behind a cloud to a tiny caterpillar crawling inside a shoe. He goes to pre-school nursery, where he has friends and kind, wise teachers. His mother was doubtful about letting him go, but her fears were unfounded. He loves it there and so do all the other children who meet him: Zhenya’s condition means he doesn’t lie or cheat, and is very sensitive and sympathetic to other people’s pain.
Omsk. (c) Anastasiya Astrakhantseva / Flickr. Some rights reserved.Zhenya likes technology: he’ll sit in his dad’s car for hours, playing with the steering wheel and imagining he’s a real driver. He can work a computer and tablet and loves playing games and watching cartoons on line, or listening to the popular children’s song ‘We are just different’ as though he knows it’s about him. He is just different. He finds it harder to learn things that come easily to other kids.
Is there a school for Zhenya?
But next year Zhenya will have to go to school. Children with Down’s syndrome usually learn and progress more slowly than most other children. In some western countries, the trend is to include them in mainstream schools, with extra support, but in Russia they attend specialised, usually residential, schools.
The problem for Zhenya’s parents is that there are no such schools in the Omsk region. So it is left to them, ordinary agricultural workers (he is a driver, she a dairy worker), to take charge of his learning and development. They read him stories talk to him endlessly as they go about their daily activities, teaching him new words and concepts.
Natalya takes Zhenya to sessions with a speech and language therapist, a psychologist and an additional support needs teacher who makes clay models, cuts out paper and plays with a puppet theatre with him. Zhenya loves going to children’s theatre shows and circuses, though he hates darkness and always needs to hold a parent’s hand if the lights go out.
About 30 children are born with Down’s syndrome in the Omsk region each year. Nearly 80% of them end up in orphanages or special residential schools that are not suitable for them.
The doctors tried to persuade Natalya to put Zhenya in one of these institutions, but she was lucky that in the area there was a parents’ support organisation, Down’s Syndrome Omsk, where they could meet up with other families at various events, find out more about the condition, and, most importantly, feel they were not alone.
‘Bringing up a child with Down’s syndrome isn’t straightforward,’ Natalya tells me. ‘Everything’s different, unusual. Of course, the main thing is to love them, like any child, but you also have to keep learning as you go along.’
Natasha was lucky - there was a parents’ support organisation where they could meet other families
She has no idea what to do next. Zhenya needs to go to school. She doesn’t want to send him to the one special residential school in the area that takes children with Down’s syndrome.
In 2011, Pavel Astakhov, the Children’s Ombudsman, visited it and found a little girl tied to her bed with her own tights. But they do have specialist teachers and appropriate learning programmes there. And Natalya doesn’t like the idea of just sending him to the local village school either.
The people at Down’s Syndrome Omsk have explained to Natalya that Zhenya will need not just an ordinary class teacher, but one-to-one support from a tutor to help him learn and adapt to school life.
Given that, according to Education and Science Minister Dmitry Livanov, only 20% of mainstream schools in Russia are prepared to accept pupils with special educational needs, where is Zhenya from Beryozovka going to find a tutor?
Is inclusion possible, or right?
Four years ago, the nearby Novosibirsk region launched an inclusive education project involving 35 schools and 776 children, though it quickly became clear how difficult it would be to implement.
Tatyana Chepel, director of the regional diagnostic and consultancy centre for children with special educational needs and disabilities (SEND), listed the extra resources needed to make such a project work: specialised professionals including a psychologist, a SEND teacher, a speech and language therapist, a paediatrician, a sympathetic school environment, a different system of assessment, separate study rooms. Not to mention physiotherapists, which schools don’t have, and life skills teacher.
The experiment showed, however, that all children, both disabled and typically developing, learned better in an inclusive setting, and there was no bullying either. The problem lay with the inability of teachers to adapt to a more flexible teaching style, even though the children included in the experiment had only mild developmental delay.
‘I can’t imagine, for example, how to cater for a child with autism in a mainstream school,’ says Svetlana Aleshchenko, director of the Tomsk Centre for Psychological, Medical and Social Management and Differential Teaching.
‘These children have no intellectual impairment, in fact they may be very able, but they just live in a world of their own. How can we get through to them? How can we create conditions in a school what would allow them the solitude they sometimes need? In Russia we have very few autism specialists in general, and none at all in schools.’
Svetlana is a SEND specialist, one of only a few in Siberia. Very few Russian universities offer courses to train such teachers, and even in the days when graduates were assigned jobs rather than choosing them themselves, there was a distinct unwillingness to travel to the frozen north. Svetlana, a former primary teacher, admits that she found it difficult to engage with ‘abnormal‘ children at first. She just felt pity for them and couldn’t get past their impairment: they were ‘sick’, ‘twisted’.
It was only later that Svetlana realised that this outward weakness hid an enormous inner strength: it isn’t easy to learn to live with a disability, and even less easy to learn to enjoy life with one. Svetlana still finds it difficult to hold back the tears as she tells me about a pupil at the centre who knew she was living on borrowed time but still tried to take everything she could from life, including knowledge from her teachers. She was a straight A student, took part in academic Olympiads, and quietly celebrated life, thanking the people who helped her live.
A pearl of excellence...
The Tomsk centre has now moved to a former children’s convalescent home with the charming name of Basandai’s Pearl, named after a legendary ruler of the city.
The centre is now the regional SEND complex, providing distance learning to children with disabilities and a school for children with motor impairments. It also offers treatment and rehabilitation for children, support for parents and training for teachers in inclusive approaches to education.
Pupils at the Tomsk Centre for Psychological, Medical and Social Management and Differential Teaching. Image courtesy of the author.There is a sports area, a gym and spaces for physiotherapy and other treatments and therapeutic activities, which include everything from injections to swimming and riding.The centre is located in the city’s green belt, accessible by ordinary bus as well as a special one for children and staff. It sits among birch and pine trees, its buildings – an administrative-medical block, two boarding houses, a school and dining hall – are all equipped with ramps.
The centre also has a variety of specialists on its staff – a psychologist, a speech and language therapist, an SEND teacher, a remedial PE instructor, a counsellor and others.
There is a dedicated computer room and work space for teachers involved in distance learning, where educational modules are constantly updated to make learning easier and more fun.
The ‘Pearl’ name has somehow stuck to the complex. After all, its work involves taking disabled children, isolated from the world, and turning them into pearls by adding, drop by drop, not only knowledge, but love for the world.
... in a sea of problems
There are not many centres such as those in Novosibirsk and Tomsk. And there are plenty of barriers to inclusion.
Last year, for example, an Omsk school planned a Paralympic lesson, with a visit from Russia’s paralympians who had brought six medals back from London in 2012. The children were ready and waiting, but the meeting had to happen elsewhere: the school wasn’t wheelchair accessible. Very few schools in Omsk are. Schools need not only ramps, but also lifts and wider doors if they are to be inclusive. But there are only 12 schools in the city that can even be called ‘newish’ – built within the last 20 or so years. All the others are well past their prime.
There are schools in the region offering inclusive education, as well as resource centres and facilities for distance learning even for severely disabled children, but they are few and far between, and there is an urgent need to create an accessible educational environment, equip school buildings and train teachers.
And even if schools become accessible, that’s not the end of the story. According to the regional ombudsman, 85% of the city’s multi-storey residential blocks are too old to be adapted for disabled residents.
Regional education departments across Russia have now begun to create an infrastructure that would allow SEND children to go to mainstream schools. But even if they succeed, the problems don’t stop there: there is little provision for these young people’s transition to adult life afterwards.
‘It’s great that this is happening, but what happens afterwards?’ sighs Svetlana Aleshchenko. ‘Children grow up – in the Tomsk region they make up just 3,200 of the region’s 64,000 disabled population, most of them out of work. Some of these children might go on to further or higher education university, but that’s all they and their teachers can hope for. The authorities aren’t even interested in improving their further choices.’
Back in the village of Beryozovka, Natalya has her own difficult choice to make: which school will be best for Zhenya?