Top tips to get your disabled child confidently back into post-pandemic life

with Rajvinder Singh Gill, Head of Wellbeing at St Piers School, Young Epilepsy

With most children back at school, attention has turned to getting back into the swing of what used to be everyday life. For some children with EHCPs who attended during lockdown3, school will seem very crowded. For others, the hiatus has been longer because of shielding or not being allowed into school for other, less legitimate reasons. If your child is still not back, please let us know why.

Rajvinder Singh Gill is Head of Wellbeing at St Piers School, which provides highly specialised education for children with neurological conditions and learning disabilities, run by Young Epilepsy. He's been giving this a lot of thought and has penned this article that we're delighted to bring you today.

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Recovery - Starting Again by Rajvinder Singh Gill

A thought in the minds of many parents and carers of children and young people with additional needs is, “What will happen now?”. How will they explain that the world has changed - but not really all that much?

The quietness and empty spaces that have dominated the last year are becoming a thing of the past now the streets are getting busier and noises overwhelm our sensory receptors, creating anxiety. How will they cope with this different kind of freedom and busyness that has been absent for some time?

Many children and young people had come to see their homes as sanctuaries where they were protected from the goings-on of the external world, living in a family cocoon. Many parents had gradually given over their time and space to allow the child and young person to feel safe and, in some ways, had let them become little kings and queens of the castle. The parents became onlookers as the TV, tablets, and other devices became the property of the children. Kitchens and living rooms became classrooms and workspaces. The pre-pandemic daily routines and realities of life were difficult to manage as parents gave their all in order for the children to feel safe and protected.

Little clarity, lots of confusion

During the last year, clarity has often been in short supply, while confusion and doubt have been available in abundance. Arbitrary central decision-making felt removed from the experiences of parents and their children.

Children have learned that life is precarious: stories of death and illness are all around with a large proportion of the population suffering the mental anguish of bereavement. All of us have been affected by the regular reminders about staying safe and avoiding physical human contact. But human touch is one of the keys to mental and emotional wellbeing. As the world opens in front of us, we still have to remember that it is not the world we had exited, but the start of something different.

Rajvinder Singh Gill

Planning to welcome the new era of a different world

Supporting children and young people with disabilities requires pre-planning and communication that offers them, in a short phrase, the expectations and ways to be. The first step in getting comfortable back out in the world is to prepare the ground by having small scripted conversations.

These conversations will lay out the "permissions" that will be there. There will be a need for resources such as paper, pictures and tablets or phones. Let’s take the example of a family of three, with mum and dad talking to their child Alan:

“On Monday Alan and mum or dad will go to the park (picture of the park). In the park Alan will see this tree (picture of the tree). Then Alan and mum will ....”

Plan how long you will be there for and include that in the story. Think about how the foray into the park will end. Will you be going to a restaurant, or take away, or shop? This would be a treat for both of you to finish a successful outing. 

It’s important that you pay attention to the scripts in your mind as these will be needed to prepare your child to manage their expectations. Use language affirmatively:

“We will be doing ....

“Alan will get a coffee once we finish ...”

Avoid saying “no”. Instead, say, “we are going to do.... then we will ....”. Or “now Alan is going to the park, next Alan will ...” If Alan wants an ice cream, for example, show him the script or the pictures and reassure him that first Alan and mum will be going to the park to see the tree, and next mum and Alan will go the shop to buy the ice cream.

How to get started

As a way of getting into this 'way of doing', get a piece of paper and write a script to 'make a cup of tea'. Write each step as a separate sentence. You will notice how long that piece of paper becomes and how difficult it is to stop getting ahead of yourself. This is what you have to do to support your child take their steps safely into this different world in which you are knowledgeable, remembering they are novices who have yet to learn the language or the steps. 

It’s also important to recognise that you, as a mature adult, have the big picture in mind when you go out. You know the beginning as well as the end. Your child is dependent on your feeling of security. They will notice your anxiety and will match this with their own feelings of being unsafe. This is why you have to put on a show of confidence, so that they can match their feelings to your security. 

Anxiety is a natural state when we encounter unfamiliar people and an unfamiliar landscape. When finding ourselves in unfamiliar places or with unfamiliar people, we scan the landscape to look for something that is familiar as that offers us a reassurance that we are safe. The thing about anxiety is that it plays havoc with our processing and creates panic in the mind. When anxiety takes over, we lose some of our capacity to use our working memory or the short-term memory on which we are reliant when making quick decisions. The effect of losing this also impacts on our long-term memory. We find that things we knew suddenly seem unfamiliar and inaccessible; those times when we find ourselves saying, “Sorry I’m terrible with names” or “My mind’s gone blank for a second”.

Another way to think about this is to imagine a filing cabinet. When the top draw is left open it is not possible to open any other draws. In times of anxiety, our senses become overwhelmed by the stimuli in the environment and we find it difficult to process. This is the reason that in a crowded and busy environment we attempt to focus on one face or feature.

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Top tips to help their sense of safety

The child and young person with disabilities will be looking to the parent/carer to seek reassurance that the world is alright. It will mean that even when you are not feeling great you need to be able to reassure them and model calm. They will repeat the same thing over and over as they attempt to make sense of things. As human beings we are always "sense-checking", to see how we look, how we speak, and how we feel. A child or young person is no different. 

Things that will help you and the children and young people with disabilities:

  • Keep these three simple steps in mind when planning to go out with your child 
    • Environment 
      • You should be familiar with the environment and know the objects or distractions that will be there. Knowing that means planning for the scripted story that you will share with your child
    • Predictability
      • The environment should be predictable. Your child’s behaviour when there would also be predictable because you know them so well. This means that you will have control over the situation and be planning ahead before events happen that may cause them anxiety. Seeing you calm and reassured means they will co-regulate to your feelings and not feel anxious.
      • Predictability also means for your child that they feel in control and reassured as they can tell what’s coming next. It means that they have confidence in you and your capacity to keep them safe. 
    • Managing the unknown
      • There will always be things or events that surprise you and cause your child to be anxious. For those times have a script that you can go through with them. Listen to their voice and let them know,” That you understand they may feel anxious but you are there and it is safe.”
  • Scripts for going out use pictures or objects of reference.
    • Reference a feature that you and the child will visit.
    • Small excursions to the park as a start.
    • Always end with a treat which the child knows will come once you have finished the outing.
  • Remember to give them the opportunity to process.
    • Speak to them and let them know that Alan and mum/dad will go when Alan is ready.
      • Leave them and get things ready to go out.
      • Be patient with them.
      • Allow them to join you.
  • Remember too that in uncertain times we all seek to control things around us as it makes us feel safe. The child and young person with disabilities will also want to do the same. It’s really important that they know that you are managing and can establish the boundaries and routines.
    • Use pictures and paper to draw the routines and share with them.
    • Show them their choices – give them options to choose from. Start with two or three choices. Too many choices and they will feel overwhelmed.
    • Allow them time to process. Remember you have the patience and maturity that they may lack.
  • Remember to ground them by offering them an object or a picture. This will also work well for transition times. Often, we ground ourselves by breathing deeply or feeling our feet on solid ground.
    • As you open the door to come out ask Alan to take a deep breath with you modelling for him. You can count to three or four.
    • Jump on the spot and ask Alan to feel the ground and the rush of air.
    • Open your lungs by opening your voice and ask Alan to do this with you. 
    • The object can be their favourite toy or a sensory object.
    • Sensory toys such as fiddle toys or their favourite cloth can helpful to have to hand.
  • Help them process their environment. We are always processing the stimuli in the environment to detect dangers as well as look for friends. Most of the time our processing takes place in our head occasionally we may blurt out loud. However, young children do the inside head talk outside. They speak their thoughts. This can often be embarrassing for the adult. Children and young people with disabilities will often be processing by talking out loud as they wait or walk along. An example of this is: Alan has accidentally bumped into his mum. Alan will possibly say “You bumped into me”. This is the phrase he expects his mum to use to let him know about the event.
    • Avoid correcting him as in his way he knows what has happened.
    • Remind him that “Alan should be looking in front of him to walk safely.”

As we take our steps to walk into this world which is in some ways familiar and yet different keep in mind that you don’t have to rush to a normal. You are the best person your child can have around them as you know about the experiences that are helpful to them and you. Don’t be afraid to open the world little by little one step at a time.

Rajvinder Singh Gill
Head of Wellbeing, St. Piers School, Young Epilepsy

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