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

 

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#100 Happy Days – Day 5

I feel terrible! I logged onto WordPress (it’s been so long they’ve changed the layout), to write a review of a completely brilliant, life changing, challenging behaviour course I recently took part in, and found that I had completely forgotten about the #100 Happy Days thing. Admittedly it’s been a somewhat challenging few months autism wise (or maybe puberty/teenage hormones wise) but there have been some good days.

I’ve started the review, and will post that today or tomorrow but in the meantime here are two historical happy day photos. Taken on south Dartmoor, on two different days they show the beauty and peace that can be found in this part of the country. I was shown this particular access point to the moor by Hillwise and Archie and I have had a few successful trips up there. I have been on a couple of navigation/hillwalker refresher days recently run by Hillwise and these were organised as 1:1 sessions so we could focus on issues around walking with Archie, and keeping us both safe. They were great fun, although I am somewhat nervous of the night navigation session I have signed myself up for later this month….

ivy 2 ivy1

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.

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.

The Jubilee Challenge / Ten Tors

Ten Tors medal In 1986 I took part in Ten Tors. In my case this was a 35 mile, two day trek across Dartmoor in a howling gale and torrential rain for which I earned a bronze medal. Ten Tors dates from the 1960’s and was established  to provide a challenge for civilians to tackle sleeping, navigating and field cooking on Dartmoor. It  really is a challenge, a proper tough one. Dartmoor remains one of England’s greatest wildernesses and is recognised as a difficult place to navigate. The moors look very similar in every direction until you know it well enough to recognise the different tors and it can get very foggy very quickly. It’s also very boggy in places so walking in a straight line isn’t always wise – I remember a school friend disappearing up to her waist on one walk – once we’d stopped laughing we had to tie a rope to her to drag her out of the bog. Ten Tors has evolved to an annual event where 400 teams of six teenagers tackle 35, 45 or 55 mile routes across Dartmoor over two days, carrying everything they need and navigating and crossing the moor independently of adults. It takes a lot of training, back in the 80’s we undertook months of training, starting with day walks and including three practice camping weekends. It was a pivotal event in my teen years – aged 15 I could accurately navigate in thick fog and was able to look after myself in wild country. It gives teens a challenge – and an opportunity to be trusted – two days and a night on the moor without teachers or parents checking up on you (okay so there are army checkpoints but you’re expected to make your own decisions and are responsible for yourself). I’ve forgotten a lot of things I learned at school, but I still use my Ten Tors training today. So all in all a somewhat brilliant event. I’ll accept the embarrassment of looking like a boy (‘WOW mum you look like me’ as Joseph said) to post a photo from our finish line in 1986.   Ten Tors 86 So how does Ten Tors have relevance for Archie? Well Archie loves Dartmoor. One of the reasons we moved back to Devon was after seeing a 2 year old Archie running free and happy across the moors. Of course moving was followed by a year or two of Archie refusing to stand on grass which rather put paid to time on Dartmoor but we got over that. I started taking Archie up on Dartmoor regularly from about the age of 8. I encouraged him to walk in all weathers although he’d sometimes shut the car door and refuse to get out if it was really bad. young Dartmoor1   young Dartmoor2 A full on Ten Tors independent trek isn’t a possibility for Archie but he was able to take part in The Jubilee Challenge. The first event was held in 1977 and it now involves about 300 participants trekking across Dartmoor on the Saturday of the Ten Tors weekend. Like the mainstream event participants camp overnight on the Friday at Okehampton Camp before starting half an hour after Ten Tors at 7.30am. Jubilee Challenge participants also have the choice of different length routes and, like those taking part in Ten Tors can earn themselves a bronze, silver or gold medal. When Archie was given the opportunity to take part in The Jubilee Challenge by his school I jumped at the chance. As all the team were new to Ten Tors is was decided to do a shorter walk (7.5 miles) for a bronze medal. The team and staff headed up to Okehampton Camp on the Friday afternoon with a very excited Archie. He hadn’t been all that well in the few days before – he’d had a very sore and blistered tongue and I wasn’t surprised to get a call asking me to join the team late on Friday night. I rushed around the house a bit shouting ‘where’s my socks? Where’s my sleeping bag?’ before hot footing it to Okehampton Camp. I arrived just as it was getting dark, just as the wind was picking up and just as it started raining. The wind howled and the rain poured all night. I was slightly confused in the morning when I found the sides of part of the school base camp had disappeared. Although Archie had been awake from 2.30am I’d missed the tents falling down around us (different schools and groups) and so hadn’t felt the need to help. Archie did eventually fall asleep at 4.45am only to be woken at 5am by loudspeakers playing Chariots of Fire; a  Ten Tors tradition I remember from 1986. I lay for a while in the sleeping bag I’d used in 1987 remembering when it had been my turn. Once I’d staggered out of bed I had to speed up a bit as we needed to be on the bus to take us to the start line at 6.15. A quick bacon sandwich later and we were ready. The weather started okay, but it soon deteriorated into 50 mph winds, rain, rain, rain and fog. I’ll add a gallery below – it was tough for the kids in places, but the team of six from Archie’s school all made it round. I haven’t included group photos because I’m not sure I’m allowed to, but really it was a great achievement for all the young people and the whole point of Ten Tors is to support your team and get round as a group – they did this wonderfully, helping each other around the course. It was an emotional moment for us all as they crossed the finish line. The conditions were absolutely atrocious and the medals were hard won. Archie’s is at the top of this post. It is exactly the same as mine from 1987. He thought this was wonderful. Roll on next year.

And just to show the sort of changeable place Dartmoor is; Ten Tors took place two weeks ago. Last weekend I took Archie onto Dartmoor for a short walk with the dog. The conditions were a little different: hot Dartmoor

When Worlds Collide

family selfie

I have very few photos of all the boys together in the early years. Partly because by the time I’d lined up the two youngest, Archie would have scarpered out of the photo but also because we didn’t really do a lot as a family. Archie at the time found neurotypical events difficult to handle & on the whole needed to spend his whole time moving. So even family trips to the beach or camping tended to break into two groups, one parent with Joe and Louis in one spot, paddling, playing football or whatever and the other walking into the distance with Archie. At that time I often felt as if we were had two entirely different families under the same roof. It was a time of contrasts, switching between planet autism and neurotypical land, with very little overlap.

Gradually over the last few years the distance between the two worlds has decreased and most of the time now we just have our family time. Okay it’s not always a typical family, but we can go out and eat together, we can shop together, we can go horse riding, surf together & ride bikes together.  This is reflected in the family photo albums where all three boys can be seen enjoying  life together, creating joint memories.

It’s entirely normal for us now to do most things together and it’s rare to get that sense of planet autism vs neurotypical world. There are times when there are reminders – attending in quick succession a secondary school carol service in a candlelit church or watching a mainstream primary nativity, versus the warm chaos of Archie’s school christmas celebrations for example was a reminder amongst others that there are still differences. There are still things that Archie can’t do. Not many, but cinemas and theatres are still a no go area for him.

Which brings me onto this week. Joseph was performing in the UK Priscilla Queen of the Desert tour for the third and final time. This is what we tend to refer to between ourselves as extreme neurotypical parenting, as it’s really a large step away from anything we experience with Archie. He absolutely loves the Priscilla CD but still wouldn’t be able to watch a performance in a 1000+ seat theatre. The weeks that Joseph takes part in professional theatre shows are always warm, sunny weeks, full of family and friends going to see the show and this week was no exception. Because it was Joseph’s final Priscilla week,  I agreed he could see the show. The final matinee of the tour was a lovely way to end a really fun week – the sort of week when you realise just how much fun parenting & well life really can be.

We arrived home after the show, both of us on a show inspired feel-good high; Joseph decked in pink feather boas and wearing a Priscilla cap and found Archie a bit angsty. This eventually led to a very major meltdown at about 8pm. Suddenly the chasm between the two worlds felt very large indeed and the high of the previous week crashed. It felt as if we were being launched from one extreme to another. One of the problems with meltdowns is that it can be very hard to understand why they have occurred. We focussed on getting the house calm and encouraging Archie to sleep.

This morning Archie again woke very anxious and a further meltdown followed. I tried to talk to him about what was upsetting him but he finds talking about negative emotions incredibly difficult. This is recognised, and is and is being targeted by school as well, but like everything it’s a long process of short steps. I tried to put myself in his shoes and realised that I’ve been out a lot more than usual in the last week watching Priscilla and family and friends have been coming and going and he might find the changes and my absence difficult. I explained to him that granny and grandad Ireland were back in Ireland and that Joseph’s theatre show was over. He latched onto this – repeatedly saying ‘different day’ and seemed happy when I replied that yes, Joseph would be at the theatre on a different day, not for ages and that I was going to be home most of the time again. If my absence was the issue it is of course something we need to keep an eye on – I can’t be unable to go out, but this morning it was a just a relief to see some of the anxiety go.

I took Archie to the beach with me to walk the dog. Richard was a bit concerned – with good reason. The beach was busy, and public meltdowns or meltdowns while driving are hard to handle. However, it was the right decision. The tide was out and as we walked I could see Bigbury working its special magic, the anxiety dropping away and my smiley boy returning.

We returned home and Archie has been wandering around this afternoon carrying a pink feather boa wearing Joseph’s Priscilla cap. The gap between the two worlds is decreasing again. We’re easing back into our funny family life.