Armenui & Elvira accepting award

Our Russian partner organisation, Obeshenye, was recently awarded 1st place in the ‘Federal Stage of the III All Russian Festival of Social Programmes’.  The award was for our work supporting children with special needs and their families within the community, promoting social adaptation.

Armenui (Obeshenye Director) and Elvira (Obeshenye Council Member & Senior Lecturer, Ryazan State University) travelled to Moscow to collect the award and meet with other charities working within Russia.

Well done everyone!

Dancing & Singing at the New Year's Party

The community portage team organised a fantastic New Year party for children and families who receive Portage in Ryazan. 10 children and their parents joined the team for the fun-filled afternoon of games, drawing, singing and a performance, by the portage workers, of a traditional Russian Christmas story.

Dyed Moroz, Snyegurochka and community portage workers

Since soviet times it is traditional in Russia to celebrate the New Year with parties and a visit from Dyed Moroz or Father Frost, the Russian Spirit of Winter, who gives presents to children, helped by Snyegurochka, the snowmaiden. The children all received a gift from Dyed Moroz and enjoyed having their photos taken with him and Snyegurochka.

Ann receiving her gift from Dyed Moro

The party also gave the parents an opportunity to meet one another, discuss issues and get ideas to help them cope with looking after their disabled children at home. The parents all expressed a keen interest for future meetings and events such as this and the community team portage workers have agreed to help support this happen.

Overall a great time was had by all, new friendships made and support networks built.

Children with Dyed Moroz & Snyegurochka

Hurry tickets selling fast!!

ThePromise Strictly Starlight Ball is being held on Saturday 10th March in The Live Room at Twickenham Stadium.  It promises to be a fantastic night – don’t miss out! Get your tickets by downloading the booking form and join us for  fun and fundraising!

We hope you enjoy reading the most recent copy of our Newsletter packed with updates about our work, successes and future plans!

Due to the overwhelming generosity of our supporters, last weeks Big Give Christmas Challenge raised over £6,000 for ThePromise.   This will ensure that 16 children in Yelatma orphanage will receive daily Portage sessions for the next year. This is an incredible gift to give them – life changing.  A huge thank you you to everyone who persevered through the technical problems to make their donations.

After our hugely successful NightWalk ThePromise & Classic Tours would like to offer this unique opportunity to cycle round London in the moonlight!

We would love you to complete this 100km ride past some of London’s most famous landmarks and help us raise money for the children and families we work with in Russia. For more information & to sign up please see Future Events or visit Nightrider London 2012 BUT hurry places go on sale on 31st October 2011 and will go fast!

Please contact Jo Pritchard if you have any questions or to let us know you will be joining us.

ThePromise Ball 2012 will take place on Saturday 10th March at Twickenham.  Tickets are now on sale and a booking form can be downloaded from the Future Events page.  It promises to be a wonderful evening – we hope you will be able to join us.

SAVE THE DATES ! 5th – 9th December “The Big Give Week”

We are very excited to be part of The Big Give Christmas Challenge this year for the first time.

The Big Give week is an exciting way of our supporters making a Christmas donation to us which can then be DOUBLED (yes, doubled!) by an external sponsor fund and some wonderful supporters of ours who have already agreed to kick start this campaign with some very generous pledges. An enormous thank you goes to the seven supporters who have made our participation in this week possible.

Please go to the big give to find out how you can help us take on this challenge!

Joint Dietitian and Speech & Language Therapist’s visit to Ryazan

Himali de Silva and Sue Williams visited Ryazan in March 2011, read their account of this fast paced and hugely successful trip…….

“>This was our initial visit to Ryazan (and our first ever visit to Russia) aimed at conducting a needs analysis as well as carrying out urgent intervention for children with feeding difficulties. The main venues of the visit were Ryazan Baby Home and community visits with portage workers. In addition, we carried out video-based assessments of selected children from Yelatma.

Day 1

On our first day in Ryazan, we visited the Baby Home. We met Olga Miroshikina, Senior Portage Worker who outlined the plan for the day and what her expectations were from our visit. She identified three groups of children she wanted training in, namely assessment and management of feeding difficulties in children with (1) Down’s Syndrome (2) Cleft lip and palate (3) Cerebral Palsy (CP). We discussed with her that our plan was to cover feeding difficulties associated with CP in detail, as initially requested. Olga however, was keen that we addressed all three groups of children, as she wanted her staff to be prepared to work with any child who may come to the Baby Home in the future with these conditions. We were then taken around the Baby Home and introduced to other Portage workers, some of whom were with children during their Portage sessions. This was most enlightening as it gave us insight into how staff and children interacted with each other. In addition it also gave an opportunity to meet the staff and find out about their expectations about our visit informally.

We asked Olga if we could observe the children at mealtimes and she arranged for us to see two groups of children having their lunch. In the first group the children were sat together at small tables and fed themselves (where possible). One child was sat on a small table and was fed by a Portage worker. The child was being fed a soup of mixed consistency (watery fluid with small pieces of vegetables/meat in it). The child coughed repeatedly post-swallow. We requested that the Portage worker fed the child the fluid only (without the bits). The child continued to cough. We then requested the child be fed some of the vegetables from the soup, mashed with the back of the spoon. The child stopped coughing. The purpose of this stepwise exercise was to demonstrate to the staff that (a) coughing was a sign of risk of aspiration (b) how to problem solve and arrive at a safer way to feed. The staff then offered the child a meal of sticky rice with custard, which was a safe consistency for the child. We recommended that the child not be given thin fluids but suggested some ways of thinning thicker consistencies down so this would be tolerated better and still provide adequate fluid. Some of the options offered were using fruit pulp or the local yoghurt drink kiffir as an alternative fluid source. Thinning down yoghurt is also an option. Olga said she would take our suggestions to a larger meeting so appropriate products could be purchased or altered. We also saw a group of younger infants towards the end of feeding. The mealtime was calm and well organised.

During the afternoon of our first day, we met with Tatiana Gross, the Director of the Baby Home, which was a privilege. We discussed our visit aims. Later that day, we met Maria Michailovna, Senior Portage Worker in Yelatma. She had brought along with her video clips of 7 children from Yelatma having their meals. We went through each of them and discussed possible strategies to make feeding safer and comfortable for the child, while not adding on to the workload of the staff. We were pleased to find that some of the children were positioned appropriately and were encouraged to be independent feeders where possible.

Day 2-3

The second and early part of the third day was spent visiting children in their homes with the volunteer Portage workers. These visits were extremely useful to gather information about family structure, availability of food and utensils, access to healthcare and attitudes towards disability. The children selected for our visits presented mainly with CP with additional sensory/behavioural needs. However, their needs and the needs of each of the families were very different.  During these visits as well as during the observations in the Baby Home, we collected video material to be used during the training.

We used the latter half of our third day to amend our presentations to tailor it as much as possible to the needs of the audience, based on our observations and discussions from the first few days.

Day 4-5

The training was carried out on the Thursday and Friday mornings as planned. It was attended by approximately 35 participants from Yelatma, Baby Home, University and Portage staff.  As planned, we presented introductory training in diagnosis, assessment and basic management of feeding difficulties in children with neurodisabilities. Our overall aims of this initial training were to (1) generate an awareness on feeding and nutritional difficulties (2) discuss realistic strategies in the management of feeding difficulties (3) identify future training needs. As we did not have access to children for hands-on practice of what was learnt during the session, we used video material from the first two days to discuss and problem-solve around issues with feeding. We addressed the specific requests by Olga as well as other participants on Autism, Down’s syndrome and Cleft lip and palate during the final day. The audience participated actively. There were many questions around using oro-motor exercises for developing chewing and speech in children with disabilities. This debate was informative to the extent that it highlighted the training differences in the UK and Russia.

We hoped that by the end of the training, we were successful in making the audience consider a cognitive/behavioural approach to therapy. There were also differences in approaches to nutrition which warranted further discussions. The audience also contributed by answering questions and making comments as well as giving examples from their own work. Overall the training went well despite the needs of the participants in the group being quite different.

Evaluation forms were given out at the end of the training. All participants found the training useful and were able to see how they would use what they had learnt in their work with children. The views expressed gave us useful information about the participants experiences and what they would like more info on and how they could incorporate what they had learnt into their everyday work and practice.

Reflections:

After visiting families with the portage workers in the community and discussing issues with Olga in the baby home (less opportunity with Maria) we felt there was more work which could be done on highlighting the issues and symptoms of children with neurodisability and how this differs from children with autism.

The audience also asked for management strategies for children with Autism, for both feeding and communication development.

The community visits (we visited 6 families) were very enlightening and were a very good use of time to see the specific challenges for families in Ryazan and the good work Portage workers do. Each family was very different and were very welcoming to the visit asking very appropriate questions which we tried to address. Having the portage worker for the specific family present was very beneficial as this meant they could follow up and monitor the advice given in the future.

Learning styles of the audience in Ryazan was different to what we were familiar with. They liked the information to be given as lists and specific points. The idea that management plans are drawn considering the individual requirements of a child created unease. However, having an assessment and intervention format, whereby they looked at each child’s nutrition, hydration, food consistency, utensils, position for feeding and feeding techniques helped to find some middle ground.

As a dietitian and a Speech and Language Therapist, prior to our trip, we were uncertain about our usefulness in the Russian context. This visit to Ryazan helped us to develop and understanding about the strengths and needs of these selected projects. We felt that the level of education of the staff and the availability of basic resources such as access to health care, food and shelter laid the crucial foundation for the next level of work with people with disabilities. The staff were receptive to change and questioned differences with insight. To that end, we hope the outcomes were felt to be as rewarding to our Russian counterparts!

Local mum, Sarah Settelen, has been awarded the “Mum on a Mission” award 2011 by the organisation Mumpreneurs UK at their annual Conference and Awards Ceremony last weekend.

Sarah started up a charity “ThePromise” in 2003 to support disabled children in Russia, both those living in orphanages and those living at home with their parents. She was inspired to do this after the tragic death of her 4 year old disabled daughter, Ellie. She has been on a mission ever since to help change the lives of these Russian children. Those living in orphanages had never received any love, therapy or one to one attention before ThePromise arrived. And parents who were struggling to care for their disabled child at home with minimal help from the government have called ThePromise’s work “lifesaving”.

ThePromise, a registered charity based in Isleworth, trains and supports carers and parents in a specialised system of learning called “Portage”. It also campaigns fiercely on behalf of these children for better funding, more resources and greater equality and understanding.

Results have been astonishing. Since setting up ThePromise children who have been bed-bound in an orphanage all their life have walked for the first time; many are now feeding themselves, and uttering their first words; most are putting on weight and all are now experiencing joy and hope for the first time. Some children living with their families have been accepted into mainstream kindergartens for the first time thanks to the dedicated work and passion of ThePromise team.

Sarah says “It’s wonderful to be given this award. When Ellie died, I promised her I would do everything I could to improve the lives of disabled children wherever I could, and it’s fantastic to have my ‘mission’ recognised by this ‘Mum on a Mission’ award”.

To read more about Sarah’s story and her award why not take a look at her recent blog!