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.

 

When Worlds Collide

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.

This Is My Child

Mumsnet is launching a new campaign today called This Is My Child. There have already been a couple of national media articles about it in the Guardian and on the BBC website. I was asked to write a guest blog post about going out with Archie which can be read here.

The aim of the campaign is to challenge negative attitudes towards those with disabilities and bust a few myths (such as autism is just an excuse for poor behaviour). Being run by Mumsnet it has a chance of reaching a wide audience and I hope educates a few, or even many. In the early days and even sometimes now, being surrounded by a sympathetic general public may have saved my blood pressure or tears on more than one occasion.

This is one aspect of an awareness campaign. Over the years my own drive to raise awareness has changed a little. Initially I just wanted people to know and to understand what life was like with autism, and to cut us all some slack. Now it’s a little different. I want people to understand that Archie is someone worth knowing. He has a great sense of humour (yep, despite that severe autism). He’s a thrill seeker (roller coasters, and he surfs much bigger waves than me) and he’s intelligent. Faced with the behaviour of someone with severe autism this last point can be hard to understand – to be fair it took me a long time to realise just how clever Archie is. His behaviour does hide what is going on inside, although with the talker and the computer it’s getting easier for him to demonstrate that there is quite a lot going on in there. The publication of books such as The Reason I Jump help spread this message of unrecognised intelligence. As previously mentioned a writer/director friend and I have developed a film project that  tells the story of a young person, not Archie but not unlike him and his blossoming into living a full life where his abilities are recognised and valued.  The script has been read (and loved) by some well known and talented actors who are keen to come on board. Like many film projects funding is an issue, so, if you fancy funding a film please get in touch.

A general recognition of Archie and others like him, having lives worth living is perhaps my biggest wish for now. If people approached those with disabilities with this understanding things might change. The Mumsent This Is My Child campaign is a step in the right direction.

Head, shoulders, knees and toes

 

Archie has always been good a learning nouns. When he was two, and saw his first speech and language therapist she devised a little posting game. We made a postbox out of a shoe box and Archie would post pictures through the slot with me saying the name as he did. This then progressed to him having to choose the correct picture from a selection to post. He loved this game and quickly learned hundreds of nouns in this way (verbs were a different matter).

The one exception to this has been body parts. Head, eyes, mouth, nose, hands, feet, legs and arms were easily mastered, but everything else has been a bit of a struggle. Even now if I ask Archie to show me his chest he’ll point to his back, if I ask to be shown an elbow he might point to his shoulder or his tummy. I suppose heads are more discrete and more obvious that elbows which don’t really have an ending or a beginning, but I have wondered for a while whether there has been something additional causing problems. I have read pretty much everything I can find written by people with non-verbal autism and descriptions of difficulties of being aware of where a body is in space are common. It is well worth reading Autism and the Myth of the Person Alone anyway, but in Lucy Blackman’s chapter, Reflections on Language, she writes: I deduce that in childhood I had real problems in knowing exactly where my connectional limbs and trunk were, where they would move to next, and even more frighteningly, where they had last been positioned. Naoki Higashida in The Reason I Jump says: In my gym class, the teacher tells me to do things like ‘Stretch your arms’ and ‘Bend your knees!’ But I don’t always know what my arms and legs are up to, not exactly. For me, I have no clear sensation of where my arms and legs are attached, or how to make them do what I’m telling them to do. It’s as if my limbs are a mermaid’s rubbery tail. Again in Autism and the Myth of the Person Alone, Naoko says: I could not point at objects for many reasons. The most important reason is that I had very little sensation of my body. So to learn the techniques of moving my right hand needed control over the ball and socket joint of the shoulder and then the hinge joint of my elbow and finally fold the other fingers and keep the point finger out. 

These accounts act as a reminder to me that when Archie is struggling to learn vocabulary it may be because he is experiencing the world and his position in it in a way that is completely alien to me.

Facilitated Communication

Many of those currently reading The Reason I Jump may not be aware that Naoki learned to type using a controversial method known as facilitated communication. In common with many of those with severe autism who type independently he needed a period of physical support. He describes the process by which he learned to write and point independently, and why he needed this support in this mini lecture. His is an increasingly common story, and as the word spreads and more people try this form of communication then we are likely to come across others saying the same thing.

The official (and negative) view of faciliated communication can be found here or on Ben Goldacre’s Bad Science blog. My own view is that we shouldn’t be throwing the baby out with the bathwater and the people who now type independently and who have said they needed a period of physical support to get to that stage should not be ignored. They have worked hard to develop their voice and we should be listening to them. There is a balance to be found between providing necessary support and working towards independence. I do believe that working towards increasing independence is important because frankly, many discount a voice that is not fully independent.

I was reading The Reason I Jump at breakfast this morning and this passage jumped out at me: I think the reason why some kids with autism try to get hold of an object by ‘borrowing’ someone else’s hand is that they can’t tell how far they need to extend their own arms to reach the object. They’re not too sure how to actually grab the object either, because we have problems perceiving and gauging distances. This was particularly relevant this morning because an hour earlier this article about Watson Dollar finding a way to communicate in his twenties had popped up on my Facebook newsfeed. It includes the following passage: Watson initially found it easier to grab his mom’s hand and guide her outstretched finger to type words rather than extend his own. He doesn’t do that much anymore but still prefers to clutch her hand while he types with his own finger. A heartwarming video of Watson can be seen here on the USA Today  website together which clearly shows his method of clutching his mother’s hand.

In Archie’s case he finds typing difficult, he finds language difficult and he finds literacy difficult.  A huge advantage of the Vantage Lite for us is that it’s easy for him to use and he can use it independently. I do automatically tend to demonstrate new words to him hand over hand (I still teach a lot of things hand over hand), but after one or two demonstrations he can access that word independently. This independent use means that he is believed, and with reference to my last post is able to demonstrate competence. As he becomes more able to communicate and as his expressive language develops I fully intend to introduce him to typing via the iPad as well. If he needs some physical support to get going I won’t hesitate to offer it. The photograph below shows some of Archie’s recent writing. Whilst he is not using writing to communicate he can now write his name without support, but it has taken many years of hand over hand practice for him to be able to produce this independently. It would perhaps be more surprising if support was not needed.

Questions, questions, questions.

Joseph finished primary school this week. Come September he’ll be off to secondary school with 174 people in his year group – more than the total number of pupils in his current school. A time of change, and it has been a week of reflection. We have been lucky with the boys’ schools. Apart from a dodgy few terms when Archie was in mainstream (and to be fair that wasn’t entirely the school’s fault – Archie should never have been there) the boys’ have been in supportive schools who have done their best to help them reach their potential. In Archie’s case that potential seems to be expanding rapidly and I’m not quite sure where we’re going to end up.

Year 6 were given a warm send off. A close group of friends, there were tears when it came to say goodbye and a rather idyllic final barbecue overlooking the sea, with water fights, British bulldog and a swim in a sea pool. The children were given some lovely gifts including a jar of questions each from their class teacher. The note attached to the jar says that the questions are designed to get the children chatting and debating with their friends and family. They range from simple questions such as ‘what is your favourite place in the house?’ (Joseph: the computer room; Louis: the front room because I watch TV in there) to more abstract ones such as ‘if you could have any superpower in the world what would it be and why?’ I’ve put it on the kitchen table to encourage meal time conversation. It’s a thoughtful gift for any family. I thought Joseph might need to be a bit older to appreciate the value of such a gift but he was genuinely delighted and was keen to get started with the questions.

It’s a particularly useful present for our family because Archie often finds these sorts of questions difficult. Most of his conversation is concrete, usually about what he’s doing, or has done and when. I asked him earlier today what his favourite food was and he struggled to answer. Archie eat; Archie like food; eat food tomorrow were the initial answers before he said sweeties. Many of the questions in the jar are great for encouraging Archie to start to understand, think about and answer these more abstract questions, where he has to express a preference rather than provide an absolute right or wrong answer. He did well with ‘what is your favourite room in the house?’ and answered bathroom pretty quickly. He may not understand the concept of superpowers yet but he was included in the conversation and made his own contribution mummy car. A question about whether you would prefer to live on the moon or in the ocean led to a great debate between Joseph and Louis centring mainly on available food. I translated a little for Archie asking him which he preferred, the moon or the sea and he said sea which surprised me a little, maybe he recognises the effect the full moon has on him! Maybe he just wants to go surfing again, life has intervened and we haven’t been for a while.

While many of the questions may be a little out of reach for Archie at the moment, through being asked to contribute and through being part of the conversation I expect him to find them gradually easier to answer. Language cannot be learned passively, it is only through using language that you learn to wield it. These mealtime conversations provide an opportunity for Archie to take part in describing preferences and in debating without the attention being solely on him. He can hear other people being asked the same questions and listen to their answers. He can begin to understand that we are interested in his answers as well as his brothers’ and he can learn that questions aren’t always asked as part of an assessment and aren’t always designed to trip you up and reveal what you don’t know. It is a way in which we can show that we are assuming competence, something which Naoki writes about in The Reason I Jump. Incidentally, slightly off topic but this is a subject close to my heart and I co-authored a book chapter published this month on the issue of competence (Laughter and Competence: Children with Severe Autism Using Laughter to Joke and Tease in Studies of Laughter in Interaction).

Whilst I am aware that Archie doesn’t (yet) have the means to always express himself in a way that is easily understandable and that he sometimes needs help interpreting questions I can see the question jar becoming an important family tradition. I am already hatching a plan to get everyone to contribute new questions when we’ve worked our way through the originals. It is interesting for all of us to think about our answers and explain or defend them. To have Archie able to take part in this is wonderful. From expensive high tech talkers to simple jars of questions other people’s gifts are having a large impact on our lives.

I Write So I Am Alive

A couple of further links for those interested in Naoki Higashida after my last post.

(1) An article in today’s Guardian by David Mitchell: Learning to live with my son’s autism. Although, as always in these articles there are some areas where my view differs a little it’s a powerful piece of writing, with of course many shared moments. This is something fairly typical, when meeting parents of children with special needs you find that although you might be virtual strangers your lives have so many shared moments you’re practically family.

(2) A link to video about Naoki Higashida by the Facilitated Communication Institute of Syracuse University, I write so I am alive. (You need to scroll down, although they’re all worth watching). Thank you Lisa from Aut2Communicate for the link. On watching the video at first I thought that Naoki was very much more organised than Archie, for example he was catching a ball and appeared calm and pretty much in control of his actions. Then Naoki started running and jumping, and hitting and biting himself and he looked very much more like Archie. Something I have noticed very recently is that as Archie progresses with the talker, and routinely produces longer sentences he is also becoming a little more organised. He can copy out words now, and he will sit at the table and concentrate on his homework (once we’ve managed to drag him away form his iPad). For a while now I’ve felt that one of Archie’s greatest problems has been his lack of oganisation and his slavery to involuntary movement and actions. It’s hard to complete a thought if it is always interrupted by the need to run and jump. It will be interesting to see how his emerging calmness and ability to concentrate develops. I am hopeful that it will continue to improve and lead us to exciting new places.

The Reason I Jump

I don’t listen to Radio 4 that often. Archie likes music in the car, and Radio 4 therefore isn’t really tolerated. Luckily my parents only listen to Radio 4 (unless Folk Night is on) and they have been enthusiastically relaying this week’s Book of the Week.

The Reason I Jump: One Boy’s Voice from the Silence of Autism is written by Naoki Higashida – a severely autistic boy living in Japan who has learned to communicate using a letterboard  (a link to the roman version, rather than the hiragana, but same idea). Translated into English by the author David Mitchell and his wife K.A. Yoshida it promises to offer a fascinating insight into autism along the same lines as that provided by Lucy’s Story: Autism and Other Adventures. Excerpts have been read on Radio 4 this week- and if you are reading this around the end of June may still be available on iPlayer.

I’m very fond of Japan – I lived there for a year, and even taught in a special school that catered for children with autism and learning disabilities – so I tend to read a lot of (translated) Japanese literature. This book is going to be a particular treat (and I’ll probably cry when I read it). It’s on order.

Combining words

Just a quick link really for this post, from the Speak for Yourself blog. They make the point that typical children are given at least 2 years before they’re expected to combine words, whereas children given AAC devices are often expected to produce sentence quickly. They then go on to talk about it being better to have to combine words yourself rather than use pre-programmed phrases (I agree with their comments on the whole btw, even if the occasional pre-programmed phrase does no harm, on the whole I think it is better to learn to produce those phrases from single words).

I wanted to add to this my observation that Archie really did need some time just using his device at a single word level. He has explored the device himself, he is now very familiar with it & with that familiarity he has begun to produce more complicated phrases. I’ve been struck by how typical his language development with the device has been, when compared to the speech development of his two younger brothers.  He went from single words to comfortably combining two words to longer phrases – now they can be very long indeed. He’s also made corrections, so whereas ‘not’ always used to appear at the end of a sentence it’s now, more often than not, found in the correct place. None of this has been achieved with intensive therapy, his development has taken a very natural course – the vantage lite just providing him with the voice to do that.

Talking to everyone

Archie’s been busy with the iPad camera this week. I’ve been a favourite subject (slightly traumatic, I prefer to be behind the camera)

 

There are times when the difference the talker has made to Archie’s life hits me between the eyes, this week has been one of those weeks. The first moment was when my Mum phoned. Archie grabbed the phone from me and said “Friday granny sweets Joseph Louis school”. He was reminding my mum that Friday is tuck shop day at Joseph and Louis’ school and he wanted some sweets. What he said wasn’t all that surprising – but the fact he was having a telephone conversation was nothing short of incredible.

The second was today. Archie was given a role on the school council and  formed part of an interview panel at school interviewing candidates for (I presume) teaching jobs. No silly questions about dinner parties with anyone living or dead, he just wanted to know favourite foods. That he can take part in interviews these days is somewhere beyond incredible. It shows in simple terms how much the talker has given him.