Tania writes: A few years ago, I ran a guest post from Jo Grace who was crowdfunding to raise funds to launch a Sensory Stories project. I was happy to donate to her campaign and even more happy to follow her success since.
Jo's back today on SNJ to talk about several conferences she's putting on later in the year, both of which she says have an underlying message of: We are the same and that when we recognise our similarities instead of focusing on our differences we all stand to benefit.
The joyful sensory world by Jo Grace
In the Autumn I am hosting two sets of conferences: one set is about supporting the mental well being of people with profound and multiple learning disabilities: PMLD. The other set is about developing our sensory lexiconaries so we can communicate more effectively with those who are sensory communicators, people with PMLD among them.
The reading and research for the mental well being conference is, I have to confess, pretty grim, with flashes of hope every now and then like the silver linings on clouds that people always talk about but rarely see. The reading and research for sensory lexiconary conferences is much more fun. A few people attending the Birmingham iterations of the conferences are planning on attending both, beginning with mental well being and then cheering themselves up the following day with the sensory lexiconary.
You could view the conferences as the light and the dark of what I do. But actually they are not separate. People with PMLD lead very challenged lives, so it’s no surprise that their mental health care needs are high. But people with PMLD also lead very sensory lives, deriving great joy from the sensory world and from the moment in which they live. They need great support for their mental well being, but they can also offer great support for our mental well being as they teach us the skills of enjoying and attending to the moment. The light and dark of these needs and skills all exist within each life.
You’ll notice I didn’t say each life, “with PMLD.” Because let’s face it, we all lead very challenged lives, everyone’s challenges are different, some visible, obvious, some hidden, invisible, and it’s often the tough times in our lives that mean we have things to teach, to contribute to other lives.
On the mental well being day we will be focusing on our similarities. People with PMLD have a lot of unique needs, but these needs do not make them different to us, they are still, in many, many, ways just like us. Their mental health needs are our mental health needs: to see friends, to get enough sleep, to eat well, to learn, to get some exercise. If we allow the label of PMLD to overshadow everything and make us think we need to find some new different way of supporting their mental health we miss the human sat before us.
Most of us are relatively aware of our mental health in the negative; we know when we’re stressed, anxious, depressed. A few of us take active care of our mental well being, in choices we take about exercise, diet or sleep. But that’s about as far as it goes. I can bet you the delegates on the Sensory Lexiconary days will be a jolly lot. I regularly meet people on training days who, like me, have a childlike glee that playing with things like this is actually a part of their job.
For the mental well-being days, I’ll be standing at the front saying they are the same as us.
For the sensory lexiconary days I’ll be reminding people, we are all the same as them.
Essentially there is no them and us, just a collection of people each with different needs and skills.
Developing an engagement in your sensory world is a route to joy, to connection with life and the world. The average person is at level one in terms of their understanding of how the sensory world brings pleasure. They know that sex and chocolate are pleasurable. Level two would perhaps be someone who really appreciates a soft jumper or someone who loves music. Level three I think could be to keep that sensory awareness going through your day, when it starts raining at the bus stop instead of just hunkering down on auto pilot take a moment to feel that drop of water hitting your skin. As you hurry down the street notice that smell, what is it? What does it remind you of? Slow down as you eat, savour the flavour. Dance, just a little bit, even if it’s just in the kitchen to the music on the radio. Hold a hug for a moment longer. Pull back the curtains and check for the stars, the moon, a sunrise, a sunset, patterns in the clouds, birds on the wires.
Researchers have studied how time speeds up as we get older. As a child the year stretches out unbearably long between this birthday and the next or between now and Christmas. As an adult it’s almost frightening how time accelerates and years are gone in a blink. This is a real thing, our perception of time changes as we age, it does – to us – go quicker as we get older. There are many speculative answers as to why this might be, one, very credible answer is that as we get older we pay less attention to the moment.
As a child we are absorbed in the painting we are doing, the lego model we are building, we can lie on our backs in the grass and watch the clouds shift across the sky. As an adult we are busy, with a to-do list in the back of our mind always.
Developing our sensory lexiconaries will enable us to communicate better with those who communicate in a sensory way, it will enable us to ‘talk’ to people with PMLD, and that enables a connection which is supportive of mental well being, but it will also, I hope, benefit the mental well being of my delegates as they spend a day exploring the sensory world that individuals with PMLD live in.
On both days I hope we will all, my delegates and myself included, recognise a little more how similar we all are to each other.
- Develop your sensory lexiconary Exeter 28/9/16 Birmingham 18/10/16
- Supporting the mental well being of students with PMLD Birmingham 17/10/16 London 11/11/16
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- Observing many ‘nows’ to infer a choice, for people with profound learning disabilities - June 23, 2020