Recovery – Starting Again

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Children and young adults with disabilities, and the process of arriving into a world made different by the pandemic 

A thought in many parents’ and carers’ minds whose children and young adults have 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 will be a thing of the past as the streets get busy and noises overwhelm our sensory receptors. How will they cope with this different kind of freedom and busyness that has been absent for some time? 

Many children and young adults have come to see their homes as sanctuaries where they were protected from the on-goings of the external world, living in a cocoon of their parents’ house. Many parents had gradually given over their time and space to allow the child and young adult to feel safe and, in some ways, had let them become little kings and queens of the castle. The parents finding themselves onlookers as the TV, tablets, and other devices became the property of the children. The daily routines and realities of life that existed before the pandemic were difficult to manage as the parents gave their all in order for the children to feel safe and protected.

Many people have experienced the last year as a time where clarity was difficult to find, whilst confusion and doubt was in abundance. There appeared to be arbitrary decisions that felt removed  from the experiences of parents and their children. As more dates are coming the certainties are again in doubt, but this time they are related and magnified by the knowledge that life is precarious: stories of death and illness are all around and most people have been affected by these through the mental anguish and regular reminders about being safe and avoiding physical human contact. Physical human contact is a key to mental and emotional wellbeing and as the world opens in front of us, we still have to remember that it is not the world we had left behind but the start of something different.

Planning to welcome the new era of a different world

Children and young adults with disabilities require pre-planning and communication that offers them, in a short, the expectations and ways to be. The first step in coming out 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”, rather say “We are going to do …. then we will ….” or “Now Alan is going to the park, next Alan will …” An example would be going to buy an ice cream, show Alan 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.

To give this a try, 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 to take their first 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 is 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 feelings 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 front, so that you know what it is and 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 these situations, we scan the landscape to look for something that is familiar because 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 and we find that things we knew well suddenly seem unfamiliar and inaccessible.An example would be those times when we find our self-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 drawer is left open it is not possible to open any other drawers. 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.

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

Things that will help you and the children and  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 as reference
    • Reference a feature that you and the child will visit.
    • Try 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 adult 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 could 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 be helpful to have to hand.
  • 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, but occasionally we may blurt out loud. However, children when they are young do the inside head talk outside. They speak their thoughts. This can often be embarrassing for the adult. Children and young adults 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.”

Summary

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 you both. Don’t be afraid to open the world little by little one step at a time.

Rajvinder Singh Gill
+ posts

Head of Wellbeing
St. Piers School, Young Epilepsy

Rsinghgill@youngepilepsy.org.uk

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