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!”