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.

Life changed in so many ways for this orphanage-leaver.

LenaLena grew up in an orphanage in St Petersburg.  She joined Sunflower’s support programme two years ago after she split up with her boyfriend.  She had realised that she was getting tetchy and tearful and was going out drinking more often.  At around this time, Lena lost two fingers in an industrial accident.  Her then boyfriend didn’t visit her in hospital, and this was when she decided to end their strained relationship. Not knowing how to live alone, she said, “I didn’t just lose myself, but my home too.  I would do nothing but work, even putting in extra shifts just to avoid having to think about anything.” Continue reading Life changed in so many ways for this orphanage-leaver.

Mother’s Day inspiration from Sunflower

Timur finds it difficult to play
The session leader attracts Timur’s attention
Timur enjoys playing with his mother, who takes a more active role.

Dilyana grew up in a family and works as a teacher.  So why does she need Sunflower’s help to raise her 3-year-old son, Timur?

Families can take part in the Sunflower programme whether one or both parents grew up in an orphanage.  In this case, it is Timur’s father, Sasha, who had the orphanage childhood.  Indeed, he is the pride of his children’s home and still works there to this day.  Although on the surface, this family look as if they are coping well, Sunflower’s experience teaches them to pay particular attention to the way children are treated in families such as this.  As they put it, in families where a woman marries a man who grew up in an orphanage, it is “as if her social skills and understanding of safety are somehow blocked.  The woman from the stable background often submits to her husband’s initiative, and observes his rules, which were laid down in his children’s home past.” Continue reading Mother’s Day inspiration from Sunflower

Preventing abuse on Women’s Day and through the year

VeraWomen who grew up in children’s homes are very vulnerable to all kinds of domestic abuse and exploitation.  Our partners at Sunflower work a great deal on what a healthy, trusting relationship looks like.  They also support any of the young women in their group who find themselves in relationships that worry them.

Today, on International Women’s Day, we are proud to share Vera’s story with you.  She has shown great strength in recognising she was being treated badly and in standing up for herself.  Thanks to you, Sunflower has been able to support her as she makes sense of what happened to her.

“Vera moved out of her children’s home into a flat this September, but she has been a member of our project for 3 years.  We helped her prepare for the big move, and we knew that she was anxious about going it alone.  At first it seemed as if all was going well.  Vera furnished her flat, found out how to pay her bills, and was enjoying inviting her friends over to her new place.

After a while, Vera admitted to us that she wasn’t living alone.  She was living with her boyfriend, who had helped her choose her furniture and doing minor repairs to the flat etc.  It was very important to her that she had someone she could rely on.

It wasn’t long before Vera told the support group that she and her boyfriend argued from time to time.  Apparently he said that she “spent too much time with her friends and should only see him.”  After one of their arguments, he shouted at her and made a swing at her.  Vera immediately broke it off with him and asked him to leave the flat.  Before he left he broke her phone, stole anything of value as “payment” for the repairs he had done, and cut up her bank cards.

Vera was frightened and didn’t know what to do, so she turned again to us.  With our detailed instructions, she was able to report the theft to the police.  She still felt humiliated and confused, but has been working through those feelings in individual counselling and group support sessions.  Now she can value the positive relationships she has managed to build with friends, but will also be more careful about who she lets into her life.

“I don’t think I would ever be able to trust another guy if I hadn’t had this support.  Now I realise that everyone isn’t like him, but I will be more careful about who I choose.””

The young people that Sunflower supports all grew up in orphanages.  They learn to value themselves and to recognise their emotional needs.  They always have someone to turn to who will help them see situations objectively and they are able to build genuinely supportive relationships with their peers through our support groups.  By supporting these groups you are helping break the cycle of domestic abuse.

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.

Roma’s first home post-orphanage

Orphanage-leaver Roma smiling as he goes into his new flatSunflower, our partners in St Petersburg, help orphanage-leavers adjust to independent living.  Much of their work is done through support groups, but an individual home visit can work wonders when there is a particular crisis.  By donating to St Gregory’s you make this service happen.

One young man who desperately needed a home visit is Roma. He grew up in an institution for deaf children and he’s now studying at college. When he lived in an institution he was quite confident. It was only when he left that he began to be afraid.

Roma was given a flat, but it was a long way from the part of the city that he knew, and even after he was given the right to live there he continued living in a hostel.

“I don’t know anything about my flat. After I signed the documents I didn’t even go there. I don’t know how to get there and I can’t remember if it still needs work doing on it. I went to the flat once with a teacher from our children’s home by car, had a look and I can’t remember anything about it. I just have a bit of paper with an address and the keys.”

Like all the others, Roma is very scared of somehow being conned out of his flat by some “dangerous” people, so it is difficult for him to see his new home as secure and stable.

With Sunflower’s social teacher, Roma worked out a convenient route from home using his travel pass. They visited his new flat. They got to know the surrounding area and found out where the doctors’ surgery, the post office and other local services are. They worked out what furniture he would need, made a budget and together made a few purchases, teaching Roma how to do this independently in future. Lastly, the social teacher connected Roma with some local organisations that can help people with his disability, and helped him explore how he could spend his leisure time.

Seeing the smile on Roma’s face visiting his new flat makes it all worth while. Hopefully, he will also be able to join in the group activities and continue to grow in confidence and problem-solving ability.

It costs just £7 to make a home visit to someone like Roma, but you can see what a huge difference it can make to someone’s life.

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

A volunteer’s view from our summer camp

Our volunteer reading to childrenYulia Bondarkova has volunteered with our partners Sunflower, to help them run their summer camp for parents who grew up in orphanages and their young children.  This is her story.

“As it happened my first meeting with the families happened quite naturally – I traveled with them on the train.  We met at the station, bought our tickets, and loaded our noisy group with its bags and baggage, little children and one pregnant mother onto the train.  It was a long journey with two changes.  There was no way of knowing that these attentive, caring mothers, who were all helping each other, had had such a hard life.  Continue reading A volunteer’s view from our summer camp