Earlier this year, Julia became a Sensory Ambassador for Circus Starr. If you don't know this company, then they are a charity providing free circus shows across the country for children and young people with complex needs, young carers, children and young people living with life-limiting illnesses, mental health challenges, or other factors that may impact on their quality of life. Their performances are Relaxed, inclusive, signed and audio described, and they also have a Changing Places approved toilet.
Building on foundations developed by sensory engagement expert Joanna Grace of The Sensory Projects, Circus Starr commissioned some new sensory story writers and tellers to develop the range of Sensory Story resources available to audiences. Joanna wrote a gorgeous story introducing a circus performance in the Circus Starr Big Top, from the smell of the popcorn to the feel of the grass underfoot, to the sound of clapping and the spectacle of the high wire, to help manage audiences' anticipation and expectations, as well as to relive the magic afterwards.
The Sensory Ambassador project has led to the development of two new sensory stories to accompany Circus Starr's winter season, and next week I get to visit two special schools in Milton Keynes to share what I've developed.
For me, the aspect I most wanted to explore is how a Sensory Story can place the experiencer in the heart of a performance so they can try on a character role and feel part of the circus, and not just part of the audience. So, my story is 'Ringmaster For A Day', a tale where the experiencer takes on the role of Circus Starr's own brilliant Ringmaster, Joel Hatton, from his jacket, to his microphone, to his responsibilities, as well as exploring what it's like to be a clown, to be an aerialist, or to be a low wire walker.
From my experiences of therapeutic performing arts, I have come across so many people with PMLD that have enjoyed being in the spotlight - I'm reminded of the sensory tour I ran for 'Let Me In' festival at Rose Theatre Kingston earlier this year, where participants spent time trying on costumes and looking at themselves in the mirror, being on the stage, and engaging with the special effects and lights with such curiosity and joy - so I wanted to create something that offered an opportunity for the experiencer to become the subject of the story and that made space for the experiencer to control and lead the pace, and to step into another character.
Taking that performance angle further, I will be conducting my visits in costume as a Ringmaster (I've always wanted a tailcoat) hoping to be led into as much as to lead an outreach circus before the children and young people visit Circus Starr for real. Can't wait!
For more information see: www.circus-starr.org.uk/news/2018-09-21/the-wonder-of-stories/
Have we found the ultimate distraction game?
Going on a long car journey can be tough for young children or anyone with high anxiety, however one of my twins has recently started finding even short journeys a bit of a challenge, especially if we hit any sort of traffic jam.
His anxiety means he needs to focus on completing the car journey as quickly as possible so he can get to the next thing, and he experiences it as a long transition towards or away from an activity rather than an activity in its own right - he's very much about outcomes, rather than processes. This means that traffic jams are especially hard. He's now old enough and imaginative enough to know that when traffic starts to slow down this means his discomfort is going to be prolonged too, and the anticipation of a delay - which is pretty likely on the motorway - is ever-present for him.
I do get it: it's pretty horrid to have those worries and the accompanying bodily sensations. It does make for some quite jittery journeys for us all as we struggle to help him stay regulated and to cope with sitting still, waiting, and trying to be patient. His dysregulation then affects his brother, who resorts to loud screeching and silly behaviour, and that then usually results in both of them thumping each other! We have had to stop a lot on recent journeys to help them both calm down, and have sometimes only been able to continue our journey if a grown-up sits between them to be a physical presence for co-regulation.
Like most parents, we've tried all the usual tactics to distract him, however toys to fidget with often turn into missiles that get hurled into the front of the car when his frustration and anxiety get too much, or become weapons with which to bash his brother; crunchy foods are helpful, but only on short journeys; screen time numbs him down but can then mean he needs more processing time at the end of the journey, which can manifest as demand avoidance at best, aggression at worst! All of these solutions don't help him sit with the journey, they distract him from what is happening, and actually the thing we need most to work on is how to be 'in the moment' rather than worrying about what comes next.
We then came across the Mini Cheddar game.
It's a very simple game for car journeys, though we've also been using it on our walk to school too, and features the iconic Mini car. As a big fan of 'The Italian Job' (thanks Mum!), I really love these little cars.
It works like this:
If you spot a Mini, then that's 10 points.
If you spot a yellow car (not a van or lorry), then that's 5 points.
If you spot a yellow Mini, that's a Mini Cheddar and earns 25 points.
You can play the game open-ended and see what the score is by the time you finish your journey (our current record for a 35 mile journey is 350 points), or you can set a target e.g. can we get to 100 before we arrive at school? Today, we reached 70 thanks to a Mini in the staff car park.
While it's a simple game, it has a lot of content to it: you need to be able to recognise a Mini and scour the roads and driveways for them; you need to spot yellow cars and intentionally exclude yellow vehicles that aren't cars - not easy when you're desperate to reach a target; you need to keep adding on your score, which means holding on to what your current score is first, and then adding on differing amounts; and, everyone needs to see the car too - you can't pretend you've seen something, your 'spot' needs to be validated by others for it to count.
The beauty of this game is that it's very distracting indeed. For my sons, it turns their attention during car journeys towards observation - they are looking out at the world, turning their attention to what is happening around them rather than focusing on their thoughts and feelings about being stuck in a car on the way to something; they find the anticipation of beating a top score or hitting a target an easier form of anxiety to cope with - they are experiencing progress through the journey as their score changes and, even in a traffic jam, there are Minis to spot; they enjoy the maths challenge too, and can both hold onto their current score and add on in 5s, 10s, and 25s. It's also very fortunate that one of my twins' favourite colour happens to be yellow.
It may be that it's just working for now because of the novelty, so I'm thinking about ways we can extend and flex the game to increase the difficulty, or to add a different challenge. It may be that it's the simplicity that is the most helpful thing, but until we experiment it's hard to say.
However, it's having a great impact for us...and it's fun too! So, if you're off out and about, why not try your own game of Mini Cheddar: can you beat our score of 350 in one journey?
Ready, steady, go! And try not to blow the bloody doors off, eh?
We've been thinking for some time that we would like to be able to offer children and their families more opportunities for engagement and play in and around our performances, and the natural solution is to provide Sensory Story sessions in our local area. We conducted a little bit of market research via some local social media groups for parents and could quickly see that some provision specifically for 0-5s with any form of special need, whether diagnosed or undiagnosed would be welcome.
Via the market research, Thrift Farm in Milton Keynes got in touch to offer their Food 4 Thought cafe as a free venue! So, the plan is now to test out a short series of free sessions over three months and then, if successful, seek funding to continue the provision. Twinkle, Twinkle, Christmas Star will be our first event, with additional sessions running in January (themed around snow, ice and cold) and February (themed around warm, fuzzy and love) 2019.
Each session will include a 30 minute Sensory Story where we will support and model to parents/carers how to deliver the story themselves, and we'll also provide them with a copy to take home and repeat. Following the session, families are welcome to stay on to play and chat. The session will be signed, Relaxed so children are able to join in however they need to in order to feel safe, and are designed to support calm and wellbeing for both children and their grown-ups.
Since opening up booking today we have been overwhelmed by the response, to the point where we've put on a second session as well as receiving enquiries about bringing the sessions to other groups, venues and locations throughout December! We're so looking forward to seeing what the future holds for this strand of work.
Huge thanks to Nadine and all at Thrift Farm for their support: you are so brilliant and so positive, and we love and appreciate that!