De-escalating with D.ESCAL8

It has been a long break. And times have been <ahem> interesting.

The big update is that Archie has now finally returned to respite, and seems delighted to be back (it was very much his choice). The path back was not entirely smooth. For a while Archie’s behaviour was quite simply dangerous. Careful diary keeping, note taking and ABC-ing revealed that he wanted respite to be the same nights every week, rather than alternate days every other week.  When this was (eventually) sorted the massively dangerous explosions decreased and we were left with manageable distressed behaviours. Lessons have been learned over the last few months, and I think perhaps the most important one is that when Archie’s behaviour becomes extremely challenging, there is always a reason. It is not “just autism”.

We have all had to learn new ways of interacting with Archie over the last few months. Understanding what he is trying to tell us, is not easy at the moment as his ability to initiate communication is somewhat reduced. This may be due to adolescence & simply being a Kevin the teenager, it may be due to increased anxiety, it may be because he desperately want to talk and so is rejecting other methods of communication. It does mean that Archie’s frustration and anxiety levels are closer to the surface and he can find it harder to stay in control.

And so onto explosions. I have found over the years, that a lot of the issues that come with autism don’t really bother me at all. I can do routine. I can do firm boundaries. I can do strange obsessions. I can do limited sleep and I can do personal care. But I find physically challenging behaviours incredibly difficult to deal with. Over the summer outbursts were coming so fast and furious I began to be scared of them. And that’s really not a good place to be. Like it or lump it, if you live with it you have to be able to deal with it. Now, I still find them tricky, but I’m not scared, and not being scared means I can stay calm, which means they don’t escalate.

A big help in learning to cope with these new outbursts was found via a D.ESCAL8 course. Run by Des Cooke, he came across me on Twitter where I won a free parent place on his upcoming three day workshop. To be honest, I’d go on any three day course if it meant a couple of nights peace and quiet in a hotel, so I said yes before I even really looked at the course content, but when I did, I realised I had been offered a course that was very useful for our current circumstances.

Commonly known as PI courses, D.ESCAL8 teach physical intervention skills. They are one of many companies in the UK that do this, but are somewhat unique in their approach. First, it’s clear they really knows their stuff. Des has been around people with learning disabilities since his childhood, and has been working in the field for years. This gives him an understanding of, and respect for people with learning disabilities that can sometimes be absent in professional training. This perspective underpins the D.ESCAL8 approach and training courses. Throughout the three days of the course we were repeatedly reminded us of the perspective of the person with learning disabilities – how would our actions feel to them?

Physical techniques tend to be taught in isolation by many other training companies. D.ESCAL8 training starts with a whole day of discussion about building relationships with individuals in distress and different real world scenarios, where PBS (Positive Behaviour Support, a psychological perspective) was used. We were taught to let go of our need to be in control, to stop thinking about winning and losing and to think about strategies that might support people living in distress. It is often a need for control that leads to poor decisions being made and being able to let go of that can revolutionise the way those with learning disabilities are cared for.

Discussions also expanded into terminology and how the casual use of common terms such as challenging behaviours can shape the way we think about individuals with learning disabilities. Des taught us to think of our aim not being to control challenging behaviours, but rather to assist individuals in distress. In Archie’s case this is certainly very true. His behaviour becomes difficult for us to deal with, when he is distressed in some way. In his case either his basic needs are not being met, or he has a question he needs answered but cannot express. When his responses are recognised as being the result of being in distress our response changes. We do not need to control these behaviours, we need to ensure his social care package is the one he wants, and preferably provide some speech and language therapy (although the latter seems a wish too far in the current financial and political climate). Further discussion on why challenging behaviour is an outdated term can be found on the D.ESCAL8 website.

During the course there were plenty of opportunities for role play. Des is a gifted actor, and he ensured all of us experienced what it felt like to be out of our comfort zones. This was extremely useful for me. I know Archie so well and am so tuned into him that I understand his moods and can read him easily. Being put in a position where I didn’t know how to react, where I made a complete pig’s ear of a role play and where I felt completely out of my depth was a powerful reminder of how it might feel to be someone working with Archie for the first time.

The final two days included physical skills interspersed with theory and discussion. We practiced on each other, and with Des. We learned to extract ourselves safely from grabs and hair pulls and that it is better not to do anything physical. We were ‘lucky’ enough to experience what it feels like to be hit (having been taught the defensive move first!) and through all this built up the confidence to cope with these situations. For me  it was this resilience confidence that was the most useful outcome of the course. I went home feeling like I could cope. And I can and I have. I was also able to recognise when things had become dangerous and ensure that the council coughed up for the support Archie needed.

The course I attended was mixed, aimed at parents/care staff/service managers. Some of the care staff and managers had attended a number of PI courses. They staff were absolutely raving about how brilliant this course was, particularly the ones who had taken courses by other providers recently – they felt this one was quite different. They were returning to their places of work enthusiastic and confident about dealing with any challenges. As a parent of a vulnerable young person, I love seeing happy staff.

If I had to summarise in one line why I found this course so inspiring I think I would say it was lovely to attend training which matched my beliefs and focus as a parent, where the course content recognised the value of those with learning disabilities and focused on making things better for them as a priority rather than just protecting staff. Of course this approach is win-win really – if the needs of those with learning disabilities are met, then staff are protected, far more than if they’re given a crash course in kung-fu moves and self defence poses.

The one fly in the ointment is without doubt the dreaded C word. Cuts. With massive cuts to social care budgets already in place and set to deepen training is often one of the first things to be ditched. It seems to be blatantly obvious to me that decent training  makes economic sense and that it will cut costs in the long run. Giving staff the tools to do their jobs well increases morale and reduces the number of incidents. Ensuring all staff understand the law and best practice decreases the risk of serious incidents, or management time spent dealing with complaints. I would beg any service managers reading this to view this sort of training as an investment that will provide a long term return both in economic and social terms.  Ideally I’d love everyone working with Archie to have been on a D.ESCAL8 three day course. If we ever run our own team that will happen.

And to finish with a photo. Taken fairly recently, it was a difficult day at times. But in part with the skills learned on the D.ESCAL8 course, we were still able to make it up Beardown Tors on Dartmoor for a picnic. This was a great thing for Archie, and being outside in the bleak open space of Dartmoor, helped him to regulate and calm himself. That’s been the lasting effect of the course – it has given us back these moments.

beardown tors

 

#100 Happy Days – day 6

The last few months have been somewhat tricky; more about that tomorrow. But today was a happy day. Greeted by a smiley boy this morning, we headed to Bigbury, where feet touched the sand for the first time since October. The picture being waved around is a photo montage from school.

image imageArchie’s keen to surf again (yay yay double yay & a happy dance). So we tested the water. Fine without boots! I reckon. So I’m back to studying the surf forecast & hope to be hitting the waves in the next couple of weeks. Hopefully I’ll still fit into my wetsuit without turning purple.

Behaviour is communication

behaviours

Behaviour is communication – especially when communication isn’t particularly easy. This is something we were taught from the earliest days – that if Archie’s behaviour became challenging it may be because he was trying to communicate something. I have repeated this for years, and sort of understood it, but at times, especially when we’re just surviving a challenging time, not really fully accepted.

For the last few years we’ve had few instances of challenging behaviours. Yes, like any teen Archie has had his moments, but they’ve been few and far between, and life has been good. Archie as been able to try lots of new activities and go to many new places, with us secure in the knowledge that he would remain calm and happy. Challenging behaviours are hard to deal with in privacy, a hundred times harder in public (I have been known to tell Joe to do a song and dance to entertain the audience we have attracted).

That all changed in July. A week before the school holidays Archie’s respite provision fell apart and he went from a planned three days a week to a big fat zero. I explained that respite was going to be shut over the summer (which he seemed fine with), then provided no further information. I did not specify what would happen in September because I did not know (I still don’t) and anyway we were focussing on the holidays. This was a mistake – my first of many.

The holidays were hell. Archie’s anxiety spiralled to levels I have never seen before, and with that came pretty ferocious meltdowns. I began to try to manage the behaviour, so I’d see the anxiety spiralling and would try and stop it, or would steel myself for the explosion that I knew would follow. It was pretty difficult for Joe and Louis as well, the meltdowns are frightening for them to witness and we had to be careful where we went. The refrain for the summer became ‘don’t try anything too ambitious’, which was a shame because we’d been terribly ambitious last summer and had had a ball.

I was so busy managing the behaviours, I forgot to consider that Archie might be trying to communicate with me. I saw the anxiety was overwhelming and believed it was coming from nowhere – the best explanation I could come up with was that it was as a result memories. Then two days before Archie was due to return to school he had another meltdown and shouted ‘diyant dai diyant dai’. This means ‘different day’ and he had said it a lot over the summer, both when I could see anxiety spiralling and during meltdowns. I had understood the words, but not his meaning. When, for example he said ‘diyant dai’ on a cliff path outside Belfast, I thought he had meant we were going to the north coast on a different day and had explained this to him (at which point he’d exploded in anger and frustration). Finally, seven weeks later, the penny dropped. He’d often used ‘diyant dai’ to refer to respite. He was asking what was happening about respite in September. I  explained that he would be at home on Thursday and at home on Saturday (the two potential respite days), he instantly stopped trashing his room and there was silence. Utter silence. This had all taken place during (my) dinner and so I finished eating, then went up to him – to find him happy, smiley and very much in need of a cuddle. Seven weeks he had spent trying to get me to answer his simple question. Seven weeks.

Today I spotted anxiety soaring and a few shouts followed. I thought back to the previous sentence and realised Archie might have misunderstood and thought I wasn’t taking him out today. Rather than managing the behaviour (giving space, talking calmly, providing food, getting ready to step back,) we had a discussion, a back and forth conversation. This was indeed what was worrying him. We soon established he wanted to take the dog out, to the moors, with me, in my car. We did this, climbed a tor and enjoyed the view (see photo). Peace.

It’s been a very challenging seven weeks and it’s taught me a lot – I just wish I hadn’t been quite such a slow learner.

#100 Happy Days – Day One

Archie's pig

I really enjoy reading friend’s #100 Happy Days posts on Facebook. I thought about doing it, but wasn’t so sure about managing 100 consecutive posts (not because I can’t think of anything each day, more because of the time taken to post every day). I have a fairly hideous few months coming  up though, I already have two Archie/learning disability-related  meetings booked in for September that I am dreading, and rather than get bogged down in the them I thought a bit of noticing the good wouldn’t go amiss.

So  I’ll post a hundred happy days, but I’m adapting it to suit me. It won’t be consecutive, will probably be autism focused (although not exclusive), and I’ll throw in a bit of gratitude type stuff & expand on reasons for my choices sometimes.

So today my moment of happiness came via the school holiday playsheme. The no-access-to-respite holiday has been difficult for Archie and somewhat fraught at times for us (because it’s difficult for Archie) & this week’s school playscheme has been a relief all round. Archie has loved it.  Today I took a break from work and sorted out lots of things that needed doing at home. Joe and Louis were out most of the day, and I pottered. Oh yes indeed, thanks to the playscheme, I was practially purring today.

The school has been a godsend. After four pointless terms in mainstream Archie switched to his wonderful special school aged 5 and has never looked back. Tenish years later we’re still often grateful to them. If I sat down and listed everything they’ve done it would run to pages, but they’ve taught him what he needed to learn to access life (waiting was a good one), they fixed his eating issues and he now eats everything (as opposed to no meat, no fish, no cheese, no fruit, no veg), they’ve always encouraged him, they’ve had high expectations and have challenged him. They’re flexible (Archie has joined in with students from other classes for example to do things like ten tors and water polo), they communicate brilliantly – first names all round – and they care.

I can’t really post a picture of Archie at school; lots of the photos have other kids in, so I’ve posted his pig instead. He drew that this term (and wrote ‘pig’) – and this from a young person who didn’t really hold a pen until all that recently. Drawing/writing is something I didn’t ever really expect. Seeing his pig makes me happy, and whenever I go into school these days there’s always something of that sort in his pile of work that surprises me.

So yay to school, thanks for everything.

And here’s to another 99 happy days.

Rollercoasters

This summer has been challenging. We ended the school year on a high, Archie received an end of year award and had a fabulous time at his school prom (squeal – not something I ever imagined happening).

Then disaster struck. A week before the summer holidays started Archie’s respite provision completely broke down. It had been somewhat fragile and fraught with anxiety for a while and quite a bit of me hoped that removing it from the equation would remove the anxiety from Archie leaving us free to have a pretty active but chilled summer. Having had such a brilliant summer last year I was pretty positive, and only seriously worried about how I was going to get through the huge pile of work I have.

That positivity lasted until about 11am on the first day when we had the first monumental anxiety fuelled meltdown.  I did contact various professionals who work with Archie as during that first week he completely fell apart but it seems things stop in the summer and we need to wait until mid/end of September for meetings and thoughts about how to repair access to respite (to be fair this delay is partly my fault, as I want school involved in any meeting). We crawled through the first week – luckily Joe and Louis were able to clear off, get out of the way and do their own thing quite a bit with friends. Then, things did start to improve slowly. The anxiety has reduced, I’ve reined back (my) expectations; dog walks and picnics replacing more exciting activities such as horse riding, we visited a near empty, little known, Lydford Castle rather than tourist-filled Dartmouth Castle etc. We’re muddling along okay now.

In all this there have been good moments – even in the dark and difficult moments of severe autism it’s never all bad. I took Louis camping for a few days. I put the tent up myself and lit fires while Louis found new football playing friends. I then made the beginners mistake of saying out loud (well on a Facebook status) how relaxing camping with Louis was, to wake up that night to him throwing up – of course I did, he’s NEVER ill!! – My razor sharp bucket grabbing skills saved the tent. Louis and I still got to see Joe playing Gulliver in the YMT-UK Gulliver’s Travels skills course (great course btw – highly recommended) although it was touch and go for a while.  Louis and I have been riding a bit, we’ve all had some funny trips to National Trust properties – Archie and National trust ladies often being an amusing combination, Archie and Louis had a great morning using the hot tubs and swim spas at Hotspring South West and we had a very successful annual meet up with holidaying college friends at the beach. Oh and we’ve eaten a lot of cake.

Toning down things has helped a lot. There’s been more hanging around at home than during previous holidays, this has been quite fun at times. The original version of this post had a video of Joe  practicing a song for a YMT-UK cabaret evening, which started well and then descended into the usual chaos as Archie, Louis and the dog joined in.  (Richard always says  the younger two will have no problems working in an open plan office – they’re used to working/practicing/studying/sleeping amongst lots of background noise). Anyway I thought I ought to take it down – although I liked it because it showed a chilled, typical family with a hint of autism that was funny moment. And I like family sing songs. We have lots of those, even though Joseph’s the only one who can actually sing.

Music has featured heavily this summer, Archie’s been walking around with an iPod or iPad clamped to his ear most of the time he’s at home, often playing the same phrasing from a particular song over and over again. The song changes fairly frequently – usually just as I’m reaching the stage of never being able to hear it again. I may be ready to cope with God Rest Ye Merry Gentlemen by the time we reach actual Christmas, but I’d had enough of it by 5pm last Thursday and luckily by the next day Archie had moved on.  An iPod seems to help him control his anxieties when out and about as well, so we’ve introduced that as a strategy while his anxiety levels are screaming.  As usual his musical taste is eclectic. The Stone Roses, Ride, Ben Howard, Cosmo Jarvis, various musical theatre shows, the previously mentioned christmas carols,  Kyle Coleman and CBeebies theme tunes all taking a turn.  The effect of music on Archie is something we’ve noticed since he was tiny. He was able to sing perfectly in tune as a toddler, as he lost the ability to speak he started to sing and he used to react physically to music, shaking all over for example when he heard powerful classical peices. I’ve recently come across this book and have bought it and added to the ‘to read’ pile. I can’t tell you anything more than that as my concentration is shot to pieces – I plan to read it in September and will report back.

And while we’re talking music may I take a break from planet-autism to recommend catching a listen to Noel Sullivan’s (aka ‘Noel from Hear’Say’)  new album – Here I Go Again. It’s good; a mix of songs from shows he has been in and a couple of his own numbers and he’s signing and personally dedicating copies he’s selling at the moment. The CD has passed the Archie test; we arrived home while True Colours was playing and he wouldn’t let me turn the car off until the song had finished – so a vote of confidence from him. Coincidentally True Colours is a song I associate with Archie, after his teacher many years ago sent home a slideshow of class photos at the end of a school year set to True Colours. Try watching THAT – photos of 6 littlies with severe autism while listening to True Colours – the lyrics are enough – I bawled.  Hear’Say passed me by a bit, (was more of an indie gal), so Noel has been a bit of a recent find for me – but  he really does have the most amazing voice.  If you get a chance to see him in the current Rock of Ages UK tour, do. Joe and I grabbed £10 tickets to see it in Torquay, and after a dreadful week when Archie’s respite provision was just starting to crumble, it was a very welcome interlude to all the hassle. It’s very funny, quite rude in places (if you’re thinking of taking kids), although not so rude that I had to cover Joe’s eyes (as I did during part of the Plymouth University Musical Theatre Society production of Jekyll and Hyde – my God!!!) and in one song, in one note Noel shows just how talented he is….. If you need proof about how incredible Noel’s voice is, have a watch of this and I challenge you not to go all shivery:

So we’re mid way though the happy holidays. I am looking forward to the normality and above all the calmness (for Archie) that September will bring. But, but, but… things are chilled enough here now to be able to climb down from the constant vigilance and management of the first couple of weeks – at least some of the time. We’ve yet to go surfing – mainly because it has been flat – we did have a chilled paddleboard around Burgh Island shortly before the holidays, but Archie doesn’t really do much in the way of flat these days.  It has been a proper rollercoaster though. Some real lows, but also good moments – the photos focus on those. And please note a rainbow chose my tent to end at. That’s got to be good.

The great outdoors

I was asked to write a guest post for Mumsnet yesterday. It was sort of about our time at a Horse Boy camp a number of years ago, and sort of about the positive effects of the great outdoors on Archie.

I am having a hellishly busy week this week, so haven’t had much time to put together a post – so for now I thought I’d add a few recent photos of Archie enjoying outdoors life, our favourite picnic spots etc. I’ll write more on being outdoors after we’ve done our first wild camping trip.

Justice for LB

If you  are looking for something to follow, please consider the #107 days blog. It will make you despair of the slopey shouldered who should be caring about our children with disabilities, but who actually only care about covering their own backsides and climbing the greasy pole. You will shed tears for Connor Sparrowhawk (I have bawled buckets). But you will also be reminded that there is a community out there that cares. A community who will stick together and hold those who wish to slope off to account. And if you have your own little dude you will be reminded that there is a ready-made community out there, who ‘get’ you, who have sat in those meetings and who have had to fight the corner for their own dudes.

Here’s my little dude telling me surfing this Saturday was ‘good’.

good