EDIT: 5th February 2019
Tweet from National Holocaust Centre and Museum:
"Thank you @CollarCuffsCo for relating #HMD to the important role we all play in improving the lives of young people with profound and multiple learning disabilities (PMLD). We have a duty to create an appropriate reflective and sensory experience for them: https://goo.gl/Jx8pqA "
Observe and Remember
Practitioners working with children or young people with profound and multiple learning disabilities (PMLD) are often asked to consider ways to offer experiences that will include them in observing particular calendar days, from Remembrance Sunday to Children in Need. The merits or benefits of doing this are frequently debated, however from scanning through a range of practitioner forums over the past few days it seems that many are being asked to do something to mark Holocaust Memorial Day - some are positive but unsure what to do, while others feel uncomfortable with the idea but have very little power to refuse the request. I feel there's a duty to respond and support colleagues, and to offer something that will, at the very least, create an appropriate reflective and sensory experience for these children and young people - you can download the resource I've written below.
The Holocaust and genocide are tremendously important and sensitive topics in contemporary society, and continue to inform discourse around human rights, religion, culture, gender, sexuality, and also disability. People with PMLD are frequently neglected or ignored by the government, local authorities and health and social care services, and are often denied access to most of the world beyond their homes or schools by a lack of even the most basic of human rights: truly accessible, hygienic and safe toileting facilities; see the Changing Places campaign.
Society at large tends to pity and patronise them and perceives them mainly to be suffering, rather than thriving; see Joanna Grace's TedX talk for a full and frank exploration of this. As practitioners we see and hold dear the potential of each individual we work with: we recognise their needs and preferences, their thoughts and feelings, their senses of humour and interests, their contributions to the world - no matter how big or small that world may be - and we continue to advocate for and with them alongside their families and carers. Within our sector, the Core and Essential Service Standards for Supporting People with Profound and Multiple Learning Disabilities have at their heart a complete dedication to ensuring the full participation, autonomy, voice and rights of a group who would, at the hands of Nazi Germany, potentially have been part of the T4 euthanasia programme. Holocaust Memorial Day is a perhaps an annual reminder or call to action for why we must keep on championing the rights and needs of people with PMLD; as part of the constant commitment to remembering the Holocaust, the often used words are 'Never Forget' and 'Never Again' - let's make sure we don't and that it never does.
Relating Holocaust Memorial Day to the important role we play in improving the lives of people with PMLD perhaps opens a new space from which to engage in this annual day of reflection, and there is a simple activity suggested here to support this. This session is drawn from the work of Liz Collar, a special education teacher with nearly 40 years of experience working across a wide spectrum of needs, and whose dedication to making art, music and history accessible and relevant to young people with PMLD has inspired so much of my own practice - she's also my mum! It is also informed by my time as an academic in the field of Religious Studies, where I developed a specialism in Holocaust Theology and Jewish History.
For more information about Holocaust Memorial Day visit: www.hmd.org.uk
We've developed a little play guide to support children in learning the skills they need to be able to wipe after going to the toilet: this is a complex physical skill to be able to master, and increasingly through performing 'You, The Loo, and Nappy-Nappy Noos' we're coming across a lot of children who simply don't have the physical development to be able to do it successfully.
Play is the key tool for physical development, so here are some of our ideas for you to explore and develop...
You can read it for free here:
HAPPY NEW YEAR! The end of 2018 is here , and we thought we'd share our year in numbers for you...
We were founded in 2016, so we're just a mere 2 years old. The past 12 months has been our busiest and biggest year yet, even though we're just an creative team of 1 (Julia) and a performance team of 2 (Julia and Ellie).
Three new productions have been developed this year: 'Crabby' (premiered in May at Brighton Fringe with The Warren); 'You, The Loo and Nappy-Nappy Noos' (premiered in May at Brighton Fringe with The Warren, and developed in partnership with ERIC UK); and 'The Christmas Clock' (premiered at Delapre Abbey in November).
Our audience has grown and grown! Before May this year we only had 'Little Meerkat's Big Panic' out on the road, and Meerkat had by that point been seen by around 3,000 people...in 2018, we saw over 1,200 people so we're well on our way to a total reach of 4,500 people! And all from £550 of funding from MK SOUP.
'Crabby' has been our second busiest show, and in 2018 we shared the seaside with nearly 750 people. 'Nappy Noos' has been seen by over 650 people. Thanks to saving up small surpluses from these performances we were able to fund our very first Christmas show, and 'The Christmas Clock' has now reached over 560 people; we will be bringing this show back in 2019 with a bigger, better Volume II (The Revenge) edition (joke!)
This means, in 2018, we have entertained nearly 3,200 people, and since May 2018 we have sold out every public show to date across all four productions!
In 2018, we were nominated for two awards: the National Diversity Awardsfor Best Community Organisation and The Small Awards for the Sole To Sole category; we eventually ended up as finalists for The Small Awards and went to a lovely awards ceremony in London. We also won two awards, scooping Best Children and Family Show for 'Crabby' at International Youth Arts Festival, Kingston and then Best Children's Show at Buxton Festival Fringe for 'Little Meerkat's Big Panic'.
Thanks to many, many lovely crowdfunders (we love you all dearly), in 2018 we raised £500 to develop 'Crabby' and received a small grant from Andrew Lloyd Webber's RUG Charities to create this production; linking this to our audience stats above, we've reached one person for every £1 the project has cost. 'Crabby' is continuing to secure new bookings into 2019, so the cost/value figure over time will soon look even better. For 'Meerkat', the cost/value figure is currently at 7 pence per person reached and falling; for 'Nappy Noos' the cost/value figure is currently at 0.5 pence per person reached! We're really proud of our low-cost model, and the reach we've achieved.
We've also raised £550 in crowdfunding towards the development costs of our new production for 2019: a sensory version of 'The Tempest'. This will be our biggest and most ambitious show yet, and we are looking towards other funding sources to ensure we have sufficient materials to be able to increase our average audience size from 50 per show up to 100 per show. We are very excited to confirm that we will be premiering the show at Brighton Fringe, marking our fifth year of participation in the festival.
As well as taking our shows out to schools, early years setting, libraries, theatres, festivals and fields in 2018, we've also increased our reach and impact through other projects. Julia became a Sensory Ambassador to the marvellous Circus Starr as well as an Associate Artist at MK Gallery within their 'Arts and Us' programme of work. In addition, Julia has delivered whole year-group sessions around understanding anxiety in two very large secondary schools, reaching over 500 young people with practical sensory strategies to support self-regulation.....
Blimey! What a year!
Thank you SO much to everyone who's come along to see us, and for all the feedback and ideas: we listen to everything you share with us and, having now had so many families that have seen multiple shows, we hold your children firmly in mind when we're thinking about what to do next and how to make it marvellous.
Wishing you all a peaceful, healthy, happy, and calm 2019. We can't wait to see you all again and to share our new productions with you...yes, that's right, it's not just 'The Tempest' that's brewing ;)
Lots of Love
Julia & Ellie
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!
Julia went to the BBC 3 Counties studio on the 9th August 2018 to chat with Nick Coffer about Crabby, with big shout outs for Dave Benson Phillips and Justin Fletcher (Mr Tumble). Click on the link below to listen....
We are exceptionally honoured and excited to be part of this year's #LetMeIn Festival at the Rose Theatre Kingston.
This is a festival presenting work by, for, and young people with a range of physical, learning and sensory needs. Now in its 6th year, the Rose's inclusive festival will involve our personal heroes: Oily Cart, as well as Turtle Key Arts, and students from the The Orpheus Centre.
We will be performing both 'Little Meerkat's Big Panic' and 'You, The Loo, And Nappy-Nappy Noos', as well as creating a bespoke sensory tour of the theatre!
Things don't really get much more awesome than this!
For more info, click the link: https://www.rosetheatrekingston.org/whats-on/let-me-in…
We're just home from our first run with Crabby at Brighton Fringe, beautifully hosted by The Warren.
This was our fourth year at the Fringe, and the fourth new show we've premiered...but, this is the first time we SOLD OUT! One more show to go on the 3rd of June and there are only 2 tickets left for that at the moment.
The feedback has been amazing, and we had such a fun time. One parent left us a 5 star review on our Facebook page:
"My little one and I thoroughly enjoyed the Crabby show - it is pitched perfectly for the age group and the message definitely sank in - my little one is still talking about how Crabby ‘uses his magic words’ when he feels angry. The performers did such a thoughtful job of putting together a productionthat is entertaining, educational, interactive, and sensory. It’s a very inclusive show with makaton signing, and it goes at a gentle but engaging pace. The children were mesmerised and felt safe to join in, and really enjoyed all the inventive props and songs. There’s a sensory play session straight afterwards to help the little ones release energy and process what they’ve just seen. The whole show is so well thought out and delivered. We’ll make sure we catch as many Collars and Cuffs shows as we can in the future. Thanks for bringing us a really fun and helpful show!"
We know we've been shortlisted for the Primary Times Children's Choice Award for both Crabby and Nappy Noos. We now have to wait until the final day of the Fringe to find out the result.
So, Crabby works! And it's now officially available for bookings!
2018 has been a roller coaster so far, packed with performances for Little Meerkat's Big Panic, development of our two new productions - premiering at Brighton Fringe in a couple of weeks time - and planning our work for the autumn season and beyond.
We were very excited to discover that we had been nominated for a National Diversity Award in the Community Organisation category, and the vote endorsements we have received so far have been nothing short of proper tear-jerkers. Here are some highlights:
"Collar and Cuffs make work that opens up theatre and performance to all, regardless of background, ability or prior experience. Her focus on creating experiences that engage all the senses ensures that everyone can benefit from the vital work they make. On top of that, there is a focus on creating work that explores important themes for parents and young people, so that the young people are entertained and the parents learn more about what may be happening in the minds of their children. This balance of useful scientific knowledge (drawn from research and partnerships with scientific professionals) with an engaging entertaining experience is vital. A further commendation must be made for the way Collar and Cuffs create work that is so engaging on such a tight budget. Showing that good planning and creative use of materials is just as valuable in creating an inclusive environment as spending money on expensive items."
"I was thrilled to hear that Julia has been nominated for this award. To say the recognition is well deserved is an understatement. A “Community Organisation Award” couldn’t be given to a better person because "Community" has been at the heart of everything Julia has done for as long as I've known her. Before "Collars and Cuffs", I have seen Julia create platforms for the LGBTQI Community. I have seen her supporting disadvantaged and vulnerable teenagers through Youth Work. I have seen her campaigning for equality for those whose voices, too often, aren't heard. Now, through her multisensory musical theatre company, Julia continues her campaign for inclusion and a sense of community for all. The work has an incredible impact on those who experience it. Julia has taken personal trauma and her own experiences of social injustice and turned them into positive learning resources for others. Having to manage her own mental health on a daily basis feeds into her shows and gives them an authority that comes from personal experience. She has taken what the ill-informed describe as a 'disadvantage' and shaped it into something that is of incredible advantage to others who are struggling. As Julia now focuses on supporting children with disabilities and complex needs I, again, find myself in awe of this woman's resilience, inner-strength, determination and unshakeable vision. There is a beautiful truth and understanding at the heart of every show she creates and shares. Julia levels with you. Not only with the children in the Audience, but with the Adults too. The Mothers, the Fathers, the Carers, the Sisters, the Brothers, the Grandparents, the Friends. She creates something that we can ALL learn from. You will hear Julia talking about delighting and enthusing children, but I can assure you that her magic works on everyone who is watching. Julia is an inspirational force that I am incredibly proud to call my colleague and friend. I am an Actor and freelance Arts Worker and so Julia and I work in the same industry. I have been lucky enough to watch Julia working and creating for well over a decade. I find myself smiling, as I write this, because I know that there is still so much more to come. "
Wow. Humbled to be recognised in this way.
Then, following that, we heard that we'd been shortlisted as a finalist for The Small Awards in the Sole to Sole category! The awards ceremony is on the 17th of May, and we're very much looking forward to attending.