Communication skills for disabled kids and teens

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

Earlier this month, Children’s Protection Day was marked across Russia.  For us in St Petersburg, this was a chance to think about what we want for the children we work with in our charity.

We want to protect the children:

  • From fear and pain in rehabilitation classes
  • From neglecting the basic needs of a child: their need for adult support, for communication and for play
  • From the use of questionable approaches that have no proven effectiveness and can harm a child and drain their resources. 

We a want to:

  • Support the child's own activity always and wherever possible. A small independent action is more important than hundreds of passive movements!
  • help develop and use skills and develop independence
  • maintain self-esteem and form a can-do attitude in all our children
  • create a story for each child through games, friends, inclusion in various life situations, choices, interests and achievements.

There are still many organisations in our country using outdated methods for working with disabled children, approaches which emphasise what a child can’t do, rather than their potential.  So when a child cannot use words they may be given no other form of communication.  Their wishes, their intelligence and their potential are not recognised because there is no way of communicating.  Or children with physical disabilities are subjected to passive treatments, often involving massage, which may be painful, are certainly not fun or motivating, and which encourage passive rather than active behaviour. 

Some of our families have already encountered these harmful methods and can be both pessimistic about what we can achieve and rather resistant to professional help.  They soon realise that we are child-centred and family-centred at our heart.  They see that working with us will benefit the whole family, give them a new network of friends and support and create many happy memories for them, as well as helping their child become more capable, confident and active.

Thank you for enabling us to use and promote evidence-based, child-centred therapies that improve lives!

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There are some levels of disability that prompt many people to give up.  Wanting miracles, they don't notice the small, but hugely significant steps that can be made with the right support.  We never give up.  We celebrate each step forward all the more because we know how hard-won it is.  We also know what a dramatic difference each small bit of progress can make in the lives of our families.

So, we are very proud of Masha and her family.  She is fourteen now, and has been part of our group for some time.  She has severe learning difficulties and communication difficulties.  She is visually impaired and has some physical disability too.  When she first came to us, she would, as a rule, hide in a corner under some cushions and refuse to come out.  She hardly interacted with anyone and didn't take part in any of our activities.  Now she understands our routines and feels much more confortable.  She also expresses real happiness in spending time with certain adults, who she is clearly fond of.  

Masha can understand a few simple verbal instructions like "sit down", "give" or "let's go".  We've also introduced her to pictures as a way of communicating.  There are a few of these that Masha remembers and associates with meaning, but this hasn't been a very successful method.  Instead, we tend to use objects as symbols.  One way this might work is that we hang three objects representing favourite activities on a board, and she chooses which activity she would like to do by selecting the relevant object.  We also use special buttons and adapt our equipment so that she can use them to put music on, use our blender when we are cooking, or tell us what she needs.  Now that Masha is a teenager she is more keen to assert her own tastes and wishes.  This kind of communication really helps reduce her frustration.  We've also been able to use the combination of a button with the message "toilet" and a continence pad to help Masha in her toilet training.  She doesn't feel the need to go herself, but with this improved communication she is starting to respond more actively to our prompts.  She also washes her hands herself, and is learning to roll her sleeves up.  We are delighted that Masha has started using this button at home, not just at our centre.  This makes the caring task for her family so much easier.

Physiotherapy and occupational therapy sessions have also increased Masha's independence.  She has learned how to feed herself with the help of an adapted spoon and a deep bowl.  It is not too late to support her in learning these skills to give her more independence and dignity in her life.

The experience of working long-term with Masha, of seeing what helps her and what doesn't, is invaluable for us.  It is this work with young people and families which allows us to build successful training programmes for families and professionals.

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Misha's book about his operation
Misha's book about his operation

Families are absolutely front and centre in our work.  For most parents, their child is the first person they have met who has special needs.  They start their parenting journey without much knowledge about what their child may be able to achieve, or how to help them.  Many of them will have absorbed the way that our society still talks about these children as "defective".  Our task is to welcome them warmly, to listen to parents, to encourage them and show them a positve path forwards, and ultimately to work together as a team to bring maximum benefit to them and their children.

Because we understand what is going on in our families' lives beyond our sessions, we can help support them through difficult experiences.  Recently, Misha needed an operation.  It was hard for him to understand what was going to happen.  So, together with his mama, we prepared a book to explain this in pictures.  The family were able to look at the book as often as they needed, which really reduced Misha's anxieties and theirs.  Misha's mama was very keen that the book should be shared with other families to inspire them in case they have a similar situation.  So often, we find that parents become our allies in sharing ideas and supporting each other.

Another way that we put this philosphy into practice is by giving our parents a questionnaire so that they can tell us what is working well and what is problematic for them.  We are of course delighted that the general levels of satisfaction were very high.  However, where problems have been highlighted, through this survey or just in our conversations, we try out utmost to be flexible, and to adapt to the needs of the parents.

Our experience of working online during the pandemic has given us an opportunity to address one of the problems facing families.  Now we are able to offer a much more flexible service.  Families who are unable to come to our centre, because of illness or some other reason, can now take part online.  This was useful for Misha's family as he recovered from his operation.  This makes it possible for us to provide much more consistent support and has been very much appreciated by our families.

Working with families and working online have been key parts in some of the training that we have offered recently to other organisations working with children with special needs.  Six organisations got together recently to offer an online conference on Alternative Technology for disabled children.  We shared our experiences of working online.  What worked well, what less well, and importantly, how you even know what is working if you aren't in the same room.  In Moscow and St Petersburg we have been training organisations from provincial cities in our techniques.  Twenty years ago, it was still the norm in Russia for disabled children to be raised in orphanages.  Families were totally out of the picture.  We have already come a long way, but we still have progress to make so that all professionals take working with families for granted and know how to build positive relationships with those closest to the children they help.

Lastly, we have been communicating directly with families beyond the groups we meet with regularly through a series of short videos on life hacks for parents with non-verbal children.  We show how you can adapt games and toys and communicate how to play them.  We show how to tackle every day tasks like cooking with the use of visual communication.  We also have lots of advice on the storage, organisation and display of the picture cards we use so often.  Velcro is our friend!  These videos are shared on social media so that we can reach parents as widely as possible, giving them confidence to give alternative communication methods a try at home.

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The branch of our project in St Petersburg includes many children who have complex disabilities.  As well as communication difficulties they may have physical and/or learning disabilities.  We firmly believe that this should not stop them staying healthy or having fun.  

We recently held a wonderful sports day for children with complex disabilities.  Everyone was able to take part, whether they were standing on their head, or bashing the punchbag.  The physios running the day were using a framework set up by the Special Olympics, which allows everyone to learn new skills and enjoy sport, even if they find it difficult to compete in a specific sport.

This is typical of how we see our children as whole people, responding to their range of needs to help them become more independent. Our support groups also embrace the whole family allowing everyone to live a richer, happier life.

In the pandemic we set up an online counselling service, which has reached families with disabled children well beyond Moscow.  With the permission of the parents, we have quoted them on our website.  Their struggles, their insights and their joys can be shared with Russian-speaking parents across the region who are looking for inspiration.

"The idea that the mama of a defective child drank or smoked during pregnancy and that's why they've got a child like that is an old-fashioned view, from a time when people couldn't explain why such children were born.  A mama is how she is because of nature, and she isn't a machine for making children that meet society's standards.  She is a creation of nature, just as her child is.  Nature made us, just the way we are."

"Now I have found a little time for myself and I can drive my car and listen to the radio, to the news or to music.  Before when I used to have my son with me, we listened to what he wanted.  It is such a pleasure to drive for half an hour and listen to what you want.  Bliss!"

"Sometimes I think that our children with special needs are people "without skin".  One day I was upset by something and I hid my tears from my son.  Sudenly he said, "Mama, don't cry!", although he couldn't see my face.  Why is my "autistic" son so sensitive to my feelings?  It touched me to the depths of my soul.  I think that children like him play a very important role in the world: they teach me and other people sincerity, they teach us to be kind and to love."

Family days like our sports day give our children and parents moments of joy, which are so important.  Fun activities, therapy focussed on the individual that brings results, and parental support together help lift our parents out of depression.  With a positive frame of mind, they are able to discover their own strengths and the whole family is lifted.  

Thank you very much for helping our families see a positive way forward.  The kindness of strangers is not lost on them.  

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The last few months since we were in touch have been as busy as ever.  We are delighted to have moved into our new premises in St Petersburg.  Having more space has meant that we can take on more staff and serve more families. 

In Moscow, some of you may remember that we translated Pictoselector, an online resource for visual communication.  Now we have written a manual to make this fantastic free resource truly accessible to Russian-speaking families.  We have also written a manual on how to adapt toys for children with special needs, to complement the workshops that we run.  

These resources have a reach well beyond the families who come to our centre for face-to-face sessions.  We're filling some of the huge gaps in resources, and also reaching out online to specialists and parents across our country and region.  In St Petersburg, we have been so encouraged by the online work that we did during the quarantine, that we have developed a programme for families in the provinces, who normally don't have access to quality support.  They can now access sessions with a physiotherapist, speech therapist and occupational therapist.  We work intensively online, and then provide advice, activities and goals to pursue at home for a month, before following up again.  It is proving very helpful.

Our training sessions and the resources we create are always rooted in our face to face work with families.  Fortunately, this has been able to continue in the last few months.  In February we were able to get away to the countryside for our customary winter camp for families.  It is a chance for our city-dwelling children to be surrounded by nature and to have new experiences, even cross-country skiing for some.  We also worked intensively on communication skills, but the hard work was more than made up for by our relaxing surroundings.

We can also congratulate Andrei on some real progress in the last few months.  Andrei has been learning how to use his communication book.  For a long time, he would only use this at the centre, but now he is using it much more at home.  He has really mastered asking for things that he wants.  He is getting much better at understanding visual time-tables and at using a timer.  Now that Andrei understands that even activities he doesn't like don't last for ever, he can tolerate them much better.  For example, Andrei's sensory sensitivity makes touching damp or slimy things deeply unpleasant.  Now that he is becoming less sensitive, and able to tolerate a little more unpleasantness, he is able to be much more active in the kitchen, and is learning how to cook chicken amongst other things.  Finally, over the last few months Andrei has been learning how to assemble small notebooks with a book-binding machine.  We are hoping that this might be a suitable occupation for him in the future.  All these small steps forward add up to a much happier time for Andrei and his family.

Thank you so much for supporting us in this vital work.  You are helping transform Andrei's life, and many more children and young people in our project and across our vast country, thanks to the long reach of the internet.

Andrei
Andrei
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St Gregory's Foundation

Location: Hampton Wick, Surrey - United Kingdom
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Twitter: @SaintGregsFound
Project Leader:
Sarah Gale
Hampton Wick, Surrey United Kingdom
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