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.

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#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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Holidays

A short blogging break has turned into a long one; but we have driven the length of the country (twice) and been to Northern Ireland and back in the process.

I’ve written before about our trips to Northern Ireland, and the screaming and difficulties that can accompany them. This trip was different. Archie was chilled, and despite us being in stop-start traffic from south of Bristol to north of Liverpool he remained pretty chilled. Weirdly there was another little shout at Birmingham. He has issues with Birmingham. The journey from one end of the country took two days with a different boat than usual – this one complete with a cabin. This ended up being a godsend, Archie just sat and looked out the window at the approaching landmass of Ireland the whole crossing.

Ferry

Usually we head straight up to the north coast to the beaches, but this time we detoured via Belfast for a week. Middle-son was doing a second stint in Priscilla Queen of the Desert at the Grand Opera House (a fabulous show by the way, if you get a chance to see it during its current UK tour grab the opportunity; you won’t be disappointed) and so we stayed in Belfast for a week. The city has changed a lot since I first visited a frightening number of years ago and it was a week of football in the park, the Titanic exhibition and a lot of drives in grandad’s car for Archie.

The second week we headed up to our usual spot on the north coast where we made our usual regular visits to the largely empty beaches but with some new experiences. Archie is keen to get involved in everything these days, including trying out a roller coaster at the institution that is Barry’s (it had loop the loops and everything, I screamed the entire way round).

big dippper

If you had told me two years ago, by the way, that I would ever go on a roller coaster with Archie I would never have believed you. He also took part in pony trekking and roller water balls. I’ll add some photos below.

Perhaps the most exciting part of our time on the north coast was finding a place for Archie to go surfing in Portrush. Before leaving England I contacted Ricky who runs Alive Surf School out of Portrush to see whether they would be able to take Archie out for a tandem surf. Ricky emailed back and said that they had recently started an autism program, but this had been with those with more language, they hadn’t yet tried any tandem surfing, but were keen to move into working with those like Archie. So we arranged that Ricky would borrow a paddle board and Archie would have a surf. I booked the younger boys in for a lesson at the same time.

The day of the lesson I messed up a bit. I had forgotten to explain to Archie that we were going to a new beach, and he thought we were heading for a beach that he has been obsessively studying on google maps for the last six months. He therefore wasn’t very happy when we took the ‘wrong’ turning. Had I been more awake I could have prevented the misunderstanding, or given him a quick drive to the first beach, but by the time I realised what was going on it was a bit late.

Anyhow Archie was teamed up with Hanno from Alive and off they went. Surfing soon worked it’s magic and Archie relaxed and forgot about the ‘wrong’ beach. The waves were a perfect size for me (so clean and the water was so clear), but a little small for Archie. He had a few sprints around the beach inbetween catching waves. Not being used to this behaviour Hanno was a bit concerned that he might be scared, but I explained this was fairly typical behaviour for Archie and standing pointing at the board usually worked to bring him back. As the waves were smallish they decided to go for a paddle. ‘I like to train’ said Hanno. Good job; Archie was delighted to find that Hanno went wherever he pointed and they ended up a small speck in the distance checking out rocks and a nearby island.

While they disappeared off into the distance I talked to Pauline who has been responsible for finding funding to run the autism events. Well we talked and surfed, both latecomers to surfing the conditions were ideal. Pauline explained that she had become inspired to start seeking funding after seeing videos on YouTube including some of Archie. Because I’m always referring to them I’ve just created a page of surfing videos by the way. This was really rewarding to hear, after all the main reason I talk incessantly on here about surfing is to encourage others to try it out. To hear that people are being encouraged to give it a go makes it all worthwhile. Although it means I won’t be shutting up about surfing any time soon I do hope it brings others the peace it has brought Archie.

Anyway after Hanno delivered a relaxed Archie back to the beach, we managed to get a shot of them both.

surfing portrush

We met up with Ricky the next day and talked about getting going with tandem surfing (my main bit of advice really being that it has to be an individual approach and may well be different for each child). Surfers, as a whole seem very good at this. They are very good at accepting people for who they are and they usually have a deep love of the waves and the sea that they’re happy to share. Certainly we found the guys at Alive just as welcoming as our friends at Discovery. Richard often describes surfers (along with the teachers at Archie’s school) as ‘a different breed’ and I think they are. Anyhow we are delighted to have found a surf school for Archie up in Portrush and will be back next year. And of course we highly recommend them. I should also add that the north coast is a wonderful place to surf. The beaches are so empty – even in August – and it gets good waves, with a wide choice of surfing beaches. A very undiscovered part of the UK.

Back in Devon we had a surf yesterday. The first one in ages (we’ve either been busy or it’s been flat). The surf was fantastic; big waves and Archie sat out the back with the big boys – local coaches and lifeguards he knows – while I caught some closer to shore. Surfers are very good at ‘doing inclusion’.

To finish; a gallery of Ireland photos, it really was a great holiday. The best we’ve had for a long time. Having an on-the-whole-chilled-and-laid-back-Archie made the whole thing much easier than in previous years. Regular holidays may be becoming a possibility.

School’s out for summer

 

We’ve had one week of the summer holidays, five to go.

In common with many children with autism Archie finds school holidays hard. His routine disappears and he finds it incredibly difficult to fill spare time. Archie has been relatively calm, although we had one awful 20 minute period where he had a total meltdown. It came out of the blue and it took me a while to work out the reason. It was the anniversary of us starting out on our trip to Ireland (first Thursday of the summer holidays) and Archie is desperate to go again. Of course I had forgotten exactly which day we had left for Ireland, but Archie with his elephant memory hadn’t. His memory can really go against him at times and he has talked about our trip to Ireland a lot for the last three months. Interestingly since the Anniversary passed (with no trip) and post meltdown he has hardly mentioned Ireland. Instead he has moved onto talking about handbrakes in cars, and how they go off when the car moves. He can say handbrake on his talker, and he has, a lot. Luckily he doesn’t seem to get quite so emotional about handbrakes; we’re enjoying the calm.

We go out somewhere every day, but the beautiful weather of the last week has made visiting the beach with Archie difficult (too busy), although we have started to explore Dartmoor again instead. I’m planning a few trips, including one to War Horse Farm for middle son Joseph and a trip to some fabulous standing stones. That one’s for me. I love ancient standing stones. Louis wants some swimming trips – he learned to swim without floats this week (in the sea no less) so I may search out a few pools on Dartmoor as well. Archie’s started shutting his eyes in photos, I have no idea why. This was lunch on Gutter Tor. A beautiful day, it was completely deserted, we did find some spent ammo, I presume it was a blank.

 

On Friday managed a trip to the beach for a surf with Downham House. It was a bit flat for Archie, although he became very relaxed at surfing by himself, and by the end of the session wasn’t even holding onto someone as he was pushed onto a wave. One of the boys, Zak, who last year wouldn’t set foot in the water, was very hard to get in at the end of the session. He seemed pretty keen to take the surfboard with him. Again, it was a fun, relaxed session. We videoed using the GoPro so have some fantastic footage. This is being passed onto Plymouth Music Zone, and next week the five surfing boys will be paying a visit to add music to the footage. Can’t wait.

 

Understanding why

I recently wrote about a day of  challenging behaviours at the beach. One of the difficulties when dealing with behaviours in a child with communication difficulties is understanding why. If you don’t understand why something is happening you can’t deal with it, or help in anyway. But if your child can’t talk, well you have a problem. You learn to analyse behaviours and look for triggers and patterns.

So we went to the beach again. And had exactly the same pattern of behaviours. Archie was relaxed, until we were about a mile away from Bigbury when the shouting and hitting started. Once again Archie was talking/shouting about going to Ireland. The talker helped understand what was being said. “Monday surfing, Thursday Uncle Stephen, Saturday Granny and Grandad Ireland, go ferry”.  Finally the reason for the behaviours dawned on me, it’s almost a year to the day since we travelled to Ireland, and the above is what we did that week. Of course I couldn’t remember which day we’d surfed, or travelled, but luckily amongst the clutter found last year’s diary and yes he had remembered correctly.

Archie’s memory is extraordinary. Using google maps he has shown us he clearly remembers places he last visited when he was 2 (he has, for example, corrected me when I have found the wrong house on google maps). But this memory can cause problems particularly because he can get very stuck in particular thought patterns related to things that have happened in the past that he would like to happen again. This is hard for him to deal with and painful for us to watch. In the case above his memory means that he knows it’s nearly a year since we travelled to Ireland. I barely remember my wedding anniversary each year, let alone what I did when. Archie can’t forget. Add in some teenage hormones, and a dose of obsessive-compulsive thoughts where he can’t stop thinking about Ireland and we get a mini eruption with each beach visit. I’m hoping that once we have had the anniversary of the trip he will calm down. In the meantime, now I understand the reason for the beach-trigger I will talk to him more about trying to think of something else (this has worked before). Understanding why we’re getting the reaction has made me feel more positive about helping him remain calm.

Once Archie had got over thinking about Ireland he had a pretty good surf at Breaking the Barrier with Jon, and again visibly relaxed once he was in the water. Breaking the Barrier had its usual happy atmosphere, even the rain obliged and held off. Archie is getting pretty good at standing.

The swell wasn’t great. The waves were a decent size although weak, but Archie managed to persuade Jon to give him a tandem ride as well.

Journey to Ulster

Archie is half Irish so every few years we make the trip to Northern Ireland. There are plenty of bonuses to this. We tend to head to the north coast where the surf is good (although admittedly this has never been a consideration until this year) and the beaches are empty. There aren’t that many places in the UK where seaside resorts are this quiet in August:

However, we have to get there. We don’t fly with Archie. Not ever. He doesn’t wait that well (spot the understatement) and we suspect it would be pretty unmanageable. Anyway we’re not that s̶t̶u̶p̶i̶d̶  brave. Given the title of this blog that sounds a little restrictive so we therefore p̶r̶e̶t̶e̶n̶d̶ ̶t̶h̶a̶t̶ ̶w̶e̶  subscribe to the view that it’s not the destination it’s the journey that’s important and drive. From Devon to the north coast of Northern Ireland, usually via Glasgow so we can visit Richard’s sister and the kids can get together with their cousins. These journeys have become the stuff of family legend, still talked about years later.

Remember that time we drove to Northern Ireland and Archie would only eat home made gluten free bread and we had to carry a bread maker and toaster in the car and try and fire them up in the hotel room.

Hey remember that time we stopped in that town in the middle of Wales and we thought Archie would love the little train, but for some reason he hated it and you got off looking like you’d been glassed

Do you remember when it was really rough and I was six months pregnant and you and Joe were being sea sick and I had to crash around after Archie who didn’t notice it was rough and was running around next to the magician on the ferry, and he kept going through the exit barrier on the on board shop and setting off all the alarms.

Oh gosh do you remember when had such a traumatic ferry journey that I made you ring your mum as we drove off the ferry and tell her we were NEVER GOING TO NORTHERN IRELAND AGAIN

Oh how we laugh. And then there’s one from last summer.

Remember when we drove to Northern Ireland and Archie screamed from Birmingham to Glasgow and we didn’t know why‘.

It was really quite incredible. The car journey is usually the easy bit with the ferry being problematic. The ferry involves waiting, and other people but Archie loves being in the car and providing we don’t hit traffic jams we usually have a pretty peaceful, if long, drive. But this year? Oh no. We hit Birmingham and Archie started screaming and he didn’t let up until we reached Glasgow. We spent quite a lot of time trying to work out what could be wrong and in the end gave up. Richard drove and I posted increasingly desperate Facebook comments. From ‘Archie appears to have lost his love of long car journeys :laughs hysterically:‘ to ‘Okay it appears we’re not allowed to stop for lunch‘  and  ‘Bad he’s been screaming literallly without pausing for breath since Birmingham, we’re north of Manchester and need to get to Glasgow‘. We were momentarily amused by the bossy Scottish road sign saying ‘Tell Your Passengers To Belt Up’. Er yes, we were trying.

Anyway we never really got to the bottom of it although Archie started screaming at Birmingham again on the way home. We came to the conclusion he just doesn’t like Birmingham. Or something.

Next time we go to Northern Ireland we’ll have the talker and I would expect this to be able to help with any screaming. Often Archie screams because he cannot make himself understood; he has something he is telling us; or he wants an answer to something but simply cannot get us to understand.  We cannot work out what he is saying and so he becomes very upset and frustrated. We play guessing games and if eventually we hit on the correct answer or correct understanding of his communication we’re rewarded with peace. If we guess incorrectly he becomes even more frustrated and loud. Already, this is something that we are finding hugely beneficial about the talker, it makes it so much easier to understand the problem and so cuts down on the screaming.

Last night after school Archie started shouting and complaining. Gradually it became louder. I grabbed the talker and asked him what the matter was. ‘Granny sweeties’ came the rely. All he needed was reassurance that yes my Mum was coming to see that night, and yes she would be bringing sweets and she was just running a little late. Silence resumed. He went back to happily google mapping and I went back to cooking or working or whatever it was I was doing. It took 2 minutes, if that,  rather than perhaps half an hour to sort out.

The talker may end up helping with another aspect of travelling with Archie that can be difficult. Archie looks, for want of a better word, entirely ‘normal’ and so when he kicks off or is difficult we can receive a very unsympathetic response from the public. Another Facebook status from last year’s journey suggests this was, as usual, a problem ‘Next time I travel by ferry with Archie I’m going to dish out lemons for the public to suck‘. It doesn’t really matter, but it can be irritating. The talker helps those that need the help to understand that something is up, that maybe he can’t completely control his behaviour and it can mean we don’t get shouted at. It means I don’t have to use my friend’s technique of a loud ‘TRY not to be so autistic Archie, you’re frightening that lady’. It makes all our lives easier.