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 3

Windy beaches & shelter for those who need it. 

For years we couldn’t get Archie onto a beach. We used to visit one near home with a wooded walk opposite. We’d park up, try the beach, Archie would refuse to go on, so we’d do the wooded walk then go home. Until suddenly one day he stayed on the beach & ended up waist deep in the sea. Now we spend hours on beaches. Today was particularly windy. 

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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.

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.

Self portraits and familiar places

Time, I thought, to put together a little album of Archie’s photographs. He takes them using his iPad and I think they give an insight into the world through his eyes. 99% of his photos are taken using this weird black and white x-ray Apple special effect.

What’s it like to have a brother with autism?

This moving video just came up on my Facebook feed. It’s lovely; if you have five minutes (well, six) please watch.

It’s where I’d like Archie to end up with his brothers (or where I’d like them to end up with him maybe), with their own relationships which they value. It is heading in that way; with each year they become closer and do more together – surfing, swimming, computers, music, dog walking, horse riding…. Archie often now seeks out Joseph in particular, to help him with the computer or to have a conversation. And two days ago Louis and Archie were bouncing around on the trampoline together for a good ten minutes having a conversation about handbrakes and giggling together as they did so.

No video yet, but a selection of photos from the last 4 or 5 months or so.

Questions, questions, questions.

questions jar

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.