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Four-footed colleagues and the career guidance program for people with Down syndrome

Downside Up Charity Fund and Mars Company represented by Pedigree Trademark did the first Russian research in the field of career guidance for people with Down syndrome. It allowed them to get basic knowledge about caring for dogs.

The experiment started in May 2015 with the preparation stage up to November. It included 5 participants of the project to come twice a week to a canine centre and a hotel for dogs Hors located near Moscow. As animals feel more lonely being far from their masters, it is there where they need special care. The young people learned how to work, how to be responsible and independent when caring for dogs. Therefore this helped to find one solution for two problems.

A specially designed program started with “the attentive adaptation”, when participants were supported by dog specialists and psychologists all the time, who also helped to control all stages of work. Then came the time for “the free adaptation”, when the young people got more freedom as they knew the animals, their needs and what they had to do.

“17 years ago the main task for our fund was children with Down syndrome staying with their families, their education and socialization. There were so many parents who abandoned them as there didn`t know what to do with their baby. Today we need to go further and develop the possibilities for the realization of their personal potential in career and society”, -Irina Menshenina, Development Director says.

«Lukomorie», a Downside Up theatre workshop unique project

World Down Syndrome Day is celebrated for the 10th time this year and it is a good occasion to demonstrate the high creative potential which is hidden in people with 47 chromosomes. The festival which took place in the Central House of Actors in Moscow with the support of Downside Up was timed to coincide with this date.

The main idea of the event was focused on the opening night of the play “Lukomorie”, prepared by the “sunny” pupils of the theatre workshop which is located at Downside Up in cooperation with such brilliant masters of stage as Sergey Yurskiy who recited the text especially for the performance, George Avsharov and Sergey Fursov.

The theatre workshop which is attended by children with Down syndrome has just been working for several months. They were those who acted the major parts in the show performed as a shadow play. “We set great goals, with no allowance for Down syndrome, and we wanted to light the feeling of wonderful inspiration in the hearts of our spectators, not the sympathy.”- Nikolay Ilnitskiy, the play director wrote on his Facebook page on the eve of the opening night. He says, that the plastic performance aimed to demonstrate the children`s nature, as their plasticity is much richer than decorations.

One can tell about the success of the play from the spectators` feedback. It was more than just capturing to watch the show. It was inspiring and joyful in a special way, as it always happens when one watches a creative liberation of soul which is promoted by real art.

Children with Down syndrome met hundreds of new friends

Hundreds of people who are not indifferent to children with Down syndrome gathered on February 14 to take part in the charity ski race and prove once again that doing good is as generous as exciting and sporting. The 13th charity race to support children with Down syndrome broke the record for the number of participants. Despite bad weather 629 sportsmen stood on the starting line.

People came with their families, friends and colleagues. All that was done to encourage the participants of the race and help the little ones involved into Downside Up programmes to take their first step, say their first word, and go the kindergarten or to school. This year 1 595 795 rubles were collected on the early intervention programmes for “sunny” children. That`s a fantastic sum of money!

The race programme offered distances for everybody, from 500 m for the smallest children to more difficult 3, 5 and 10 km for adults. This year those who are most resilient could try a 15 km distance. The participants could take part in a relay race or joyful competitions without skis for corporate teams, and visit our famous open air kitchen, try hot tea and special “sport” mulled wine. Afterwards medals for all players and prizes for winners were prepared, as well as the entertainment programme and the draw where people could get valuable presents.

This year four-footed pets from a sled dog club traditionally took part in the race. Alaskan malamutes, so cute, who attracted attention of all little ones, took part in the exhibition dog sled ride. Certainly, all could pet them and take a picture.

The professional judging panel was represented by the head coach of the Russian national crossbow shooting team Svetlana Salnikova, the first Russian champion in the 24hours ski race and European champion in winter triathlon Natalia Sila-Novitskaya, and master of sports, the Russian champion and World and European Championships medalist Olga Klimova.

Annually ski race “Charity sport” is held in several Russian cities at the same time. This time Kirov started one day earlier and passed the torch to Moscow. Totally 11 cities from different Russian regions took part in Charity Sport ski race under the auspices of Downside Up.

Downside Up specialists from Russia learn british experience

A group of Downside Up specialists from Russia (Moscow) together with their colleagues from Yekaterinburg have recently made study tour to the UK. Russian teachers have already made several visits to the UK, enjoyed fruitful meetings with British colleagues for sharing new ideas and experiences, for analyzing different educational programs and approaches. This time their main task was to learn more about speech and language development programs for early age, which British specialists use in their work. In the light of the changes in the educational system taking place in Russia today it is very important to analyze British experience: how different types of organisations (state, municipal, non-profit) support families and how they coexist and cooperate. And to look closely at the way the system of family support for children with special needs is implemented in the UK.

Tatiana Nechaeva, director of Family Support Center of Downside Up says: “We knew beforehand that we would see a more favourable picture of the situation than the existing one in Russia. Early Intervention System exists in the UK more than 30 years and there are no doubts that family-centered care model is the most appropriate model of early intervention for children with special needs. In England children with special needs are not isolated from society: there are a lot of different institutions of early intervention, classes with specialists at training centers and charitable organisations, special nurseries and schools, inclusive institutions and also special classes at mainstream schools are available. Moreover, a child, his or her parents and teachers get full support of specialists regarding a wide range of matters”.

Downside Up’s team has visited the classes on speech development at two non-governmental organisations. One of them is “21 and Co” which conducts its activities at the Langdon Down Centre in Normansfield, where Dr. John Langdon Down lived and worked. “21 and Co” is a charity offering help and support to children with Down syndrome and their families in South West London, Surrey. Its main activities are: speech and language development for children, social and communication skills, support for parents who have recently received a Down syndrome diagnosis for their child, support for brothers, sisters and other family members, awareness-raising activities in the local community.

Another organization - “Downright excellent” was founded by parents of children with Down syndrome about 8 years ago. This organization is also fundraising and conducts speech and language group therapy and communication and social interaction skills development for children of 0 to 9 years old. All programmes are conducted by experienced specialists. In England programmes, developed by Down Syndrome Educational Trust are extensively used. In particular, See and Learn programme, which is the basis for many speech and language therapists from the UK and is a standard for other approaches to follow, depending on a child’s needs. Unfortunately, there are no standardized programmes for children with Down syndrome in Russia.

“Downright excellent” organizes and delivers classes and meetings with families at Golden Lane Campus, which includes primary school, special educational needs school for children with motor problems and Early Intervention Center “Stay and Play”, where children can come with parents, play and also pass the time. Different children, including those with impairments of support-motor apparatus, are close to each other, move freely and play together. Specialists, volunteers and parents are helping them and for children with impairments of support-motor apparatus there is also a massive park of different technical supplies. And everybody feel comfortable! This space in full conformity with such descriptions as “a completely accessible environment”, “barrier free environment”.

“Bird in Bush Community Nursery” – is a municipal nursery and an excellent example of inclusion of young children with special needs with their typically developing peers. This wonderful nursery is a part of The London Early Years Foundation (LEYF), which began as the Westminster Health Society in 1903. The main task of this foundation is to support and to offer high quality education and healthcare services to families with children of early and pre-school age.

During this study-tour Russian specialists have visited the Early Years Center Wandsworth, which offer support to young children of 0 to 8 years who have significant or complex needs or disabilities (including Down syndrome) and their families living in Wandsworth. This Center not only delivers the classes for children but also offers information and practical support to families in finding family support services and trainings, helps to contact with other parents etc. The Early Years Center Wandsworth also offers support in processing documents for getting special support of a child at education institution.

Inclusion of young children with special needs in mainstream nurseries and schools in London is an accurately regulated process of accompanying, including choosing a tutor, visiting specialists of Early Intervention Centers and getting methodological recommendations from them, and also legal support of family if required. For example, voluntary group of parents Positive Parent Action (PPA) offers information and psychological support for families, raising children with special needs.

Not only Downside Up’s specialists from Moscow participated in this study tour, but also their colleagues from Yekaterinburg: representatives of two pilot enterprises of Downside Up in Sverdlovsk region (in Project “Dissemination of family-centered model, developed at Downside up”): Loginova Nadezhda, director of Center of psychology-pedagogical rehabilitation, Zarechniy and Drobakhina Inna, deputy director for educational work of “Rehabilitation center for children and teenagers with special needs”, Kamensk-Uralskiy. And longstanding partner of Downside Up - Tatiana Cherkasova, the chairperson of “Solnechnyie Deti” (“Sunny Children”) parents organization.

LET ALL THE CHILDREN GO HOME!

“A visit to Downside Up, where we saw parents bring their little children to a junior group learning session was enough for us to decide to take our child home. We rushed immediately to collect all the necessary documents to take our daughter home. She was six weeks old then…And all these years Downside Up Early Intervention centre has been the only place where we received help". Ludmila Kirillov, the mother of a 6-years old girl Nika.

There is hope specialists in maternity homes will no longer advise parents to abandon children with Down syndrome – we wrote about it in our previous issue. But is this really enough for families to have confidence in the future? It is the lack of objective information and early intervention which makes parents so unsure of their capabilities to raise a special needs child. More than once we were witness to parents’ changing their mind and refusing to abandon after they were given support and told their children had future.
The Kirillovs are only one of the 3700 families registered on Downside Up programs.

Please make a donation and help us support the families of children with Down syndrome.

£12 is the cost of special literature package for families of new-born children with special needs;
£27 is the cost of a session with a psychologist for parents;
£32 is the cost of a home visit of an early intervention specialist to a family of a 16-months old child.

Let every child go home with their families. Thank you for your generosity!

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