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Sensory Wellness Inspired by People with Profound Disabilities

Boy in wheelchair laughing with his two sisters

This is a guest blog for Disabled Living written by Joanna Grace from The Sensory Projects. It has been written in Joanna’s perspective around the pandemic and her thoughts on sensory wellness, inspired by people with profound disabilities. 

As lockdown began, many people with profound and multiple learning disabilities who had been used to leading rich and varied lives, attending schools or care settings, suddenly found themselves at home, isolating with their families or their care teams.

Whilst some people around them struggled, many of the people with profound and multiple learning disabilities that I know thrived. And as they did so, they reminded those closest to them of the resources available to use all to boost our wellbeing.

Here are three top tips that I have learned from them.

Take joy in simple things

Overthinking stuff can really clog up the capacity for fun in our lives. One family sent me a video clip of their son laughing hysterically at a sneeze, and another shared the bubbling joy of their son’s experience of an ice lolly: the surprise on his face at the coldness, the grasping of his hands against the slippery ice, and the chase of this strange object around his lap tray. What started out as bemusement quickly slipped for him into a joyful exploration.

Sometimes we do not allow ourselves these pleasures, would we look silly if we let ice slip out of our hands, do we politely supress our giggles at how funny that sneeze sounded?

In your own life watch out for the simple things that bring you joy and welcome them, one of the perks of lockdown is that you are not in a public space, you are in the privacy of your own home and you make the rules here. If you want to play with your food: play with your food!

Spend time in a sensory moment

Anxiety is born out of a fear for a future that maybe. In a pandemic, when any of our futures and any of the futures of our loved ones, could include a horrible illness we have a lot of reason to feel anxious. Justified as it is, it is no way to live. Taking time to spend in the here and now, in the present, without fear, is immensely valuable.

I am in contact with lots of teachers, all struggling to provide a meaningful education online, in our chats many of them talk about how much they are missing the steadying presence of their students in their lives. If you are in the company of someone with profound and multiple learning disabilities you are in the company of someone who is a master at connecting with the present moment. One teacher who contacted me spoke of her students being a “daily reminder” to her to connect with the present.
I have begun a class in sensory-being online. Sensory-being is a form of shared mindfulness based around a wonderful sensory object. A parent who took the class told me it had given her a way in to the peace in a moment that her daughter (who has profound and multiple learning disabilities) knows instinctually. She described how with two other children at home and her husband working from home everything can be very fraught. But by spending time with her daughter, sharing a moment of sensory engagement, it is as if she can take a little step out of the busy chaotic world around her and enter a little pool of quiet and calm.

Enjoy the nearness of people you love without need for words

Several families I know made the decision at the start of lockdown to bring their loved ones home from their care settings. One in particular agonised over the decision. Their son’s care placement was so good, he had friends there, access to all sorts of equipment and activities that he didn’t have at home, and although many of them would have to cease no matter where he was because of the restrictions they knew that the care team he was with would go above and beyond to provide him with interesting and exciting days. In comparison, they worried, what could they offer him at home in their terraced house? Ultimately they went with their gut instinct, which was in dangerous times to gather their family close and they bought him home. I have the privilege of watching their lives through the window of Facebook, and aware that they were worried I kept an eye out in my newsfeed for their posts. Initially they seemed to be going above and beyond creating activities for him. Their posts were fun, but something about them was a little too loud, a little too bright. They were trying a little too hard.

The parents are well into their late sixties and their son is in his late thirties. I had a few brief messenger conversations with the father, asking me questions about colour changing lights and where they could get particular gadgets they’d seen. I do not have a lot of tech knowledge but I suggested they could get a similar effect with a torch, some coloured cellophane and a big umbrella.

I kept watch, the umbrella was purchased, there was the son’s smile of amusement at the light show cast by the torch upon it and the proud smile of his father beside him. In time there were less posts. Now I see the odd one or two, they take him to a place they love to walk that has path that is easy for his wheelchair at times of day when they know no one else will be there. He sits in the garden alongside his father as he does the gardening, plant cuttings are placed on his lap tray for him to explore.

I sent a message. “How are you getting on?” I asked. His Mum wrote back. She said they had been so worried about being enough for him, but through wearing themselves out trying they had had to stop, and when they stopped they realised he was happy to just be with them. She said now he is a part of their lives rather than a job they are doing. And she described how he will vocalise along with his Dad singing as he gardens, and that she loves to stand in the kitchen window and listen. She said previously her husband would have sung from time to time whilst gardening but their son’s vocalisations encourage him to do it more and that brings her joy.

Being close to people you love and trust is incredibly precious. You do not need to be anymore than you are. And you do not need to talk or have words for things. Sharing time is precious.

The pandemic has been and continues to be incredibly hard, but through its darkness much light has shone. I’ve been impressed by the embodied wisdom of people with profound and multiple learning disabilities, as I’ve shared above. At the start of the pandemic I grumped about possibly delivering my training, that has always been done in person in the past, online. But when I did finally get myself in gear and do it I was touched that people joined it from around the world, in person I can touch lives as far away as the trains in the UK can get me, but online I can touch lives around the world.
The staggering kindness of people has been one of the brightest lights, we’ve all watched the heroism of the NHS staff and the keyworkers that have kept everything going. Through my little Facebook window I’ve seen glimpses into just how bright that light can be. Recently a man I know who has profound and multiple learning disabilities caught COVID19. He lives in a care setting and it was so frightening for his family to be unable to be with him. But his care team closed around him and supported him as if he were their own son. When some of them got sick too and had to be replaced his family were amazed by the care workers who volunteered to leave their own families at home and move in with him 24-7 so they could be the support he needed. In times of greatest need, strangers to them stepped forward and offered to help.

I see kindness everywhere, in big ways and in small. Since the start of lockdown I have been curating a list online of free resources people and organisations have been giving away. It is as if, when faced with this awfulness, everyone looked around for what they could do and offered it up. The news will report those not following the rules, but the great majority are, it is one big team effort to keep each other safe, one enormous act of care. People are awesome!

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