Communication skills for disabled kids and teens

by St Gregory's Foundation
Communication skills for disabled kids and teens
Talking films
Talking films

We've all had to try new things this year and the theme is continuing.  In Moscow we are making a project we started at the beginning of the pandemic permanent.  We started online counselling for parents with children with special needs because the quarantine was such an acute crisis.  We knew we had to provide urgent support.  The project was so successful, reaching some of "our" families, but also helping parents living far from Moscow, who would find it very difficult to access help even in normal times.  We are delighted to have found funding so that we can continue this service.  Caring for children with complex needs brings great joys and huge challenges.  It is exhausting and can be incredibly lonely.  We are glad that we will be able to continue supporting some of the many, many parents who feel near breaking point.  Their children can only benefit from their parents regaining some balance and hope in their lives.

In St Petersburg we have a change of venue for our work.  We had been using a special school as our base.  The school has been growing and no longer has space for us, so we have had to move.  We are still in the awkward transition phase and have some work to do to feel completely at home.  We were able to bring our own equipment with us, but we still have to set up our kitchen and seminar rooms now we can no longer share kit with the school.  The stuff we need to buy ranges from a simple kettle for around $35 to a water purifier for $377 (the tap water in St Petersburg is not safe to drink).  Once we are fully equipped, we will be ready for the end of pandemic restriction.  We'll be able to offer our usual warm welcome to families, to continue teaching life skills in our kitchen, and to pass on our skills through our seminars.  Any help you can offer is gratefully received.  We are just a week away from Giving Tuesday.  On that day the wonderful people at GlobalGiving will be adding a bonus to every donation.  If you'd like to help us, make a note, donate on 1st December and see your donation go further. 

Lastly, we've been talking films with our young people.  Who likes what kind of films? What have they seen at the cinema?  Who do they like to go to the cinema with? What snacks do they eat when they are there? As we talk, we select pictures to make our chat possible.  Then we can print off a sheet of pictures and symbols, which means that our young people can talk with their friends and families on the topic too.  In the face of all these changes, our regular work continues.  Giving our children and young people the tools they need to communicate, socialise and become as independent as possible.

Thanks everyone, and stay safe.

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Misha
Misha

So the holidays are starting and we are coming to the end of the most challenging and strange period.  So many rules have gone out of the window.  We used to say that you couldn't deliver Ocupational Therapy or Physiotherapy online.  Now we know you can.  We've found new ways of working with families, maintaining contact through group and individual online sessions.  Throughout our aim has been to help families be resilient. 

Firstly,we have to equip them to care for their children, now totally full time without injuring themselves (many of our children, particularly in the St Petersburg group) have physical disabilities as well as cognitive differences.  Our multi-disciplinary approach in St Petersburg means that we have been able to step up training for parents in lifting and moving their children while protecting their backs.  Misha's mother is particuarly grateful.  Her son has complex disabilities, but now he assists her in moving him and washing him.  His input doesn't look like much, but it is a great help to her, and a great sign of progress. 

Just as important is a sense of emotional support for parents now isolated in challenging roles without the usual backup that makes special needs parenting do-able.  It has been so important to keep the group meetups going so that parents can support each other, and children can see their friends, at least on screen.

However, we haven't lost amibition in our original aim of helping children communicate, play and become as independent as possible.  It is so easy for children with special needs to learn how to be helpless.  We encourage them to take part in their care, to discover what games they enjoy, and to communicate their needs and wishes.  It was wonderful to hear that, at the height of lockdown, Maxim was taking great pleasure in exploring his appartment for the first time.  Having not shown much interest before, now he crawled all around it.  We were able to find an ingenious solution to fit his vertical standing support next to the sink so he can have the pleasure of washing up.  He's also been learning new cooking skills as you can see in the picture.

Alongside our care for "our" families, we have also run a successful online learning course about Alternative and Augmentative Communication with specialists and parents taking part from Samara, Saratov, Kharkov, Minsk, Barnaul, St Petersburg, Nizhnii Novgorod, Kirov and Moscow.

A big thank you to all of you for helping us to maintain our work and even extend it in the most difficult circumstances.  We wish all our families, and you, a chance to relax over the summer and recharge.  We will be back in the autumn with more activities for our families, and more news for you.

Maxim cooking at home
Maxim cooking at home
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Anastasia Ryazanova, Director
Anastasia Ryazanova, Director

In these peculiar times, we have a message for you from our Moscow director, Anastasia, to explain how we are continuing to work to meet the needs of young people with complex disabilities.

"We very much hope that you and all our friends around the world and your families are well.  These are difficult times and we really, really wish you health, peace, endurance, and that this whole story of the virus and financial difficulties will be over soon.

On 23rd March we went into lockdown until at least the 12th April as decided by the Mayor of Moscow.  I am afraid that the situation is likely to last at a minimum until the end of April, but we have to wait and see how the situation develops.  This all means that all our young people and families and our staff have to stay at home and we have been advised to minimise contact.  

We have moved the work of our centre online, which means a great deal of planning and discussion.  Last week we spent the whole day discussing the situation with our colleagues.  It felt like our telephones and computers were hot.  Our last online conference didn't end until 8pm.  We have paid for a month's use of Zoom so that we can have the lengthy group discussions with staff and families that we need.  We are working with families to think up activities that they can do with their children at home. 

Of course it is hardest for those with the most severe disabilities, and it is not easy for the parents either.  Many are struggling with the uncertainties and with the sudden change to domestic life and routines.  Of course, we will try our hardest to support our families and to remain in contact.  We are planning some interesting and useful things together and are simply trying to offer support.

In addition, we have increased the online role of our psychologist, so that parents can access consultations online.  This is available to parents living in Moscow and across the country.

We all send our very best wishes to you and thank you for your support."

 
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Timosha and his mama are in the centre
Timosha and his mama are in the centre

Timosha is a member of our St Petersburg group. Like all the children in this group, he has physical challenges that means he can only sit and stand with support. These also affect his ability to talk. Timosha doesn’t speak, but thanks to our work, that doesn’t mean that he doesn’t communicate. Far from it!

His mama tells us,

"Timosha has been coming to the project for two years. He can understand speech well, as well as pictures, photographs and a few familiar written words. This year, Timosha got a communication book, which he has been actively using at home and at sessions. He quickly understood how the book worked and now we are increasing the number of pictures and making the structure more complex. Timosha is also learning to understand rules, to take turns, and to accept other people’s choices. We are practising these skills in games and Timosha is making great progress. Most of all during the group sessions, Timosha likes the tea and biscuits, letters, playing hide and seek with little toys, and writing words with help. He uses his communication book in all his games.

Everything has changed since we joined the project two years ago. I have felt colossal support, Tim has started to change and loves going to the sessions. What’s most important is that we have concrete goals and understand where we are going. Timosha doesn’t talk, and we can’t always understand what he wants. Now, thanks to the project, we have a communication book, which Timosha can use to ask for a drink, to choose what he wants for breakfast, to tell us where he wants to go, or what he wants to play. He can even tell us what mood he is in. It’s great!

At the sessions with the physio, Tim is learning to sit at a table with a support on his legs, to stand at a support, to transfer his weight and to use his left hand. We practice all this at home when we are playing and in our daily routines. When we started coming here, Timosha couldn’t do any of this without adult help. Now he can! Timosha has also learnt to interact with other adults and children, to wait and to observe rules. Our family is very grateful to be part of the project. Thank you!"

We video some of our sessions and put them on YouTube so that professionals and families can see how we work and the progress the children can make.  You can see Timosha at work with his mama and his speech and language therapist by following the link below.  I'm sorry we haven't sub-titled the video.  You may also wish to skip the first minute of intro, especially if you don't read Russian.

Links:

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Picto-Selector at work
Picto-Selector at work

As you will know by now, if you have been following our project for a while, there are two sides to our work.  We support a relatively small number of young people and children with disabilities that affect their ability to communicate, and we develop tools and techniques that can be used across our country by families, professionals and disabled people themselves.  Of course these are related.  When we find something that works well for our young people and families, we want to share it!

This month we have news on both fronts.  First of all, we are celebrating the launch of a Russian language version of Picto-Selector.  This is a free online resource that provides pictures that can be used in a variety of ways and particularly to build visual timetables.  These are so helpful for many of our young people, particularly those who are on the autistic spectrum.  A visual timetable helps them to understand what is going on around them, and what they should be doing at that time.  It helps to learn new routines and skills by giving a visual representation for those who find it hard to understand and remember verbal instructions. 

Picto-Selector was developed in the Netherlands by a parent of a child with a learning disability.  We have been working on a Russian translation to make the tool available to families across Russia.  Although there are other options out there in Russian already, this resource is free, making it the only affordable option for many families who really need it.  This month we are running seminars to show families and professionals how to use Picto-Selector.

On the other side of things, we have been celebrating Halloween.  We love our young people to feel included, and that means joining in with holiday celebrations.  With a little creativity, we have made some ghoulish sensory experiences that everyone can appreciate.  

Thank you, as ever, for your generosity, which helps make this work possible.

Halloween slime
Halloween slime
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St Gregory's Foundation

Location: Hampton Wick, Surrey - United Kingdom
Website:
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Twitter: @SaintGregsFound
Project Leader:
Sarah Gale
Hampton Wick, Surrey United Kingdom
$4,658 raised of $10,000 goal
 
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