Supporting disabled children and their families online

How do you explain to a child who cannot speak that they can’t leave their small flat for the foreseeable future?  How do you provide physiotherapy, such a hands-on discipline, online? These are the questions facing our partners at Physical Rehabilitation in St Petersburg and Communication Space in Moscow.  They have been pulling out all the stops to make sure that families are supported at this difficult time, and parents equipped to deal with the new challenges.

Maxim’s mother explains a little of what their new life under quarantine is like.

“When the self-isolation started, it seemed as if our children would be without support for an unknown period.  But then we remembered everything that we had learned in our group and individual sessions.  Gradually, we began to organise activities at home, dusted off a pile of unused games, toys and aids for moving Maxim, which we never got round to using in the business of daily life.  Maxim developed a wish to explore our space.  He chose to do this by crawling on all fours, when before he had never crawled around the flat.  It’s the first time our son has studied the flat so thoroughly – we can’t get his wheelchair through the narrow corridor to our second room – but he got there on his own, and very energetically.  Generally, the usually perservering Maxim’s energy is bubbling over.

Then in April, the A-Tech project suggested online activities, and we decided to give it a go, even though we couldn’t imagine what it would be like.  The online format maintained the number of individual and group sessions.  So, although the situation demands a lot more strength and attention from parents, we are not alone.  Our therapy team is always in touch.  Together we resolve our pressing day to day problems over video link.  For us, one of these problems was how to encourage Maxim to help with the washing up.  Without a vertical support it is very difficult for him to stand.  So, together we decided to saw out a section of the shelf under the sink, so that the support would fit under the sink.  It was a very unexpected, but successful solution to our problem.  The joy of splashing in water should be accessible to everyone!

By video we are working with occupational therapist Dasha on our hands: we do a video showing how Maxim can move his hands in all directions, then we discuss and think about how he might be able to, for example, pour milk.  Maxim is now an expert in fixing himself a milk cocktail on his own.  Of course it is hard for Maxim and me without seeing Dasha in the flesh, but considering the circumstances we are continuing to develop with these fun video sessions.

The project has recommended a set of daily exercises to develop strength, stamina and flexibility at home.  For Maxim, as one of the youngest in the group, Sasha, the physiotherapist, thought up and filmed a game in which he had hidden 2 sets of 10 squats!  After we have learnt a new exercise, we take a video and send it to Sasha.  Filming our different exercises keeps us motivated.  We have set up a special group where parents can share the videos.  At the moment we are not having individual online sessions: because of his age and character, MAxim does not take to instructions over the computer.  It doesn’t have the same authority or passion as seeing Sasha in person.  So, we do our exercises independently according to the regime Sasha has set.  We do them a bit at a time when we can fit them in.

On Saturdays we gather in groups of five online.  It is lovely to see each other on video.  The kids have really been missing each other.  We have fitness with Sasha, experiments with Dasha and conversation with Asia (psychologist and communication specialist).  All the sessions are run taking Maxim and the other children’s characters into consideration.

Thanks to the A-Tech project we are not bored at home.  We are active, but we can’t wait to see each other in person!”

 

Astonishing, but true story of a family hit three times by hearing loss.

Fedya in the toy bed
Fedya

Our Club for young children with hearing loss can be a huge support for families. Over the last year and a half they have been helping a family with a scarcely believable story.

Nearly a year and a half ago a mother came to our Club for the first time with her little boy, Slava, who had a Cochlear Implant (which can help profoundly deaf people perceive sounds). She was heavily pregnant, so after the first visit Slava would come with his grandmother. Continue reading Astonishing, but true story of a family hit three times by hearing loss.

Our winter newsletter

Front page of the SGF newsletter Our winter newsletter is out now with more in depth stories of the people that we are able to help thanks to our wonderful, generous supporters.

Find out

  • how Sunflower helped Natasha adjust to life after the children’s home,
  • how Mkurnali are supporting Luka’s family so he doesn’t have to put himself at risk working on the streets,
  • and how Elya is overcoming disability to feed herself for the first time aged 19, and more.

Kindergartens equipped to look after disabled children

Kindergarten pupilFor most children in Russia, kindergarten is the first step in a their education and the first experience of a life outside the family.  This is a stage that many disabled children miss out on because mainstream kindergartens aren’t equipped to look after them.  There just aren’t enough places in mainstream or special provision.

This term we hope that more children with special needs will have a more positive start in kindergartens, and that the staff will feel more confident meeting their needs.  Our partner organisation, Physical Rehabilitation, in St Petersburg has been running a programme particularly aimed at training kindergarten staff Continue reading Kindergartens equipped to look after disabled children

Our summer newsletter is here!

Front cover of SGF summer newsletterDownload our summer newsletter to find out more about the summer camps we will be funding this year.  This includes the unique perspective of one of the volunteers helping on the Sunflower summer camp for parents who grew up in orphanages and their children.  We also have a full report on the training visit our colleagues from St Petersburg and Moscow made to Krakow to get new ideas on helping children with complex disabilities to communicate.  From Georgia, our colleagues at Mkurnali report on the vulnerable young people that they have saved from prison recently.

Read our winter newsletter

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.

Christmas appeal: help Gleb communicate

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 and his mother ZhannaGleb 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.

https://www.youtube.com/watch?v=gmxTFr4kb7Q&t=29s

5-year-old Liza learns to play

Liza with speech therapist using her communication buttonLiza’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

Dutch visitors to Dinamika school are impressed

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.